Fibromyalgia ... from possible diagnosis of fibro to life beyond...

M.E. Our priority is reliable independent research | This is Bristol

2012-01-31T17:08:00.000Z

Our priority is reliable independent research | This is Bristol

Our priority is reliable independent research

.

Monday, January 30, 2012

Bristol Evening Post
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STARTING this year people who are affected by the illness ME (Myalgic Encephalomyelitis) are invited to become members of an ME Community Trust local support group corresponding to their parliamentary constituency.

For the first time, instead of relying exclusively on volunteers, we are inviting applications for paid positions for administrators, to work remotely from home, for a flexible 16-20 hours (for example, disability claimants who are permitted to earn up to £95 a week, or unemployed people, £120 a week, while still claiming benefit or seeking work) to be paid for, on a non profit basis, from membership subscriptions.

Unlike most organisations, we do not take the view that ME is the same as Chronic Fatigue Syndrome (CFS) but that it is much more than mere tiredness, certainly not laziness, malingering, or some kind of psychological weakness. It is a genuine, seriously disabling illness, with a physiological origin.

We do not accept that conclusions drawn from CFS studies can be applied to people with ME.

We do not, therefore, recommend behavioural techniques or graded exercise, nor do we suggest any other treatment, whether defined as alternative, complementary, radical, or any supplements.

We only advise good primary care from a sympathetic GP for symptom relief and will help members find such a doctor if they have been unable, or feel neglected.

Our priority is reliable, independent, research, designed to seek a universally agreed diagnostic test – such as a blood test or scan – with the aim of suggesting effective treatment in the hope of a cure, or significant recovery, which would be funded by the Trust. In the meantime, members will be given support with benefits claims, practical help with shopping, cleaning and gardening, provided with the latest news and information and given the opportunity to make new friends and contact others in the same boat, by Skype and instant messaging, when they wish and turn it off when they are not able.

Members will pay £2 a week by direct debit, subject to a minimum membership of 100 per constituency area.

This is to cover the salary of the administrator, funding for research and to meet the overheads required to produce a newsletter and cover administrative costs.

We shall still depend on volunteers to keep the subscription at this affordable level.

Exemptions will apply to those for whom cost would bring hardship. Provision will be made for ME sufferers without internet connection to receive information by post or be visited by members who are more able if they wish.

Applications should be made by e-mail, to drjohngreensmith@mecommunitytrust.org

In the subject line Local Support Group, name of your constituency or postcode and in the body of the e-mail your contact details

Or

In the subject line Local Support Group, name of your constituency or postcode and in the body of the e-mail, your CV and contact details

Or you may apply by post to Dr John H Greensmith at the address below.

Dr John H Greensmith

ME Community Trust.org

Downend

Screening for Alcoholism

2012-01-28T09:17:00.000Z

Screening for Alcoholism mean corpuscular volume (mcv) not enough on its own to diagnose alcohol abuse

Chronic Fatigue Syndrome (ME/CFS) News From Phoenix Rising - The Biggest Research Funder in the World on ME/CFS: The NIH on ME/CFS in 2012 Pt. I

2012-01-27T08:08:00.000Z

Chronic Fatigue Syndrome (ME/CFS) News From Phoenix Rising - The Biggest Research Funder in the World on ME/CFS: The NIH on ME/CFS in 2012 Pt. I

Round of latest USA research and thinking on CFS/ME

WTF

2012-01-24T14:23:00.002Z

Looking back it seems that my GP mentioned that my pains seemed like fibromyalgia late 2003 early 2004 ....must try to find out when she first prescribed me nortryptaline for sleep the accompanying disorder, she consulted rheumatologist at the local hospital about that so I would hope it his somewhere in my notes....reason for my concern...today she denied having diagnosed me with either fibromyalgis or ME...floored and baffled...

Report on the proposed changes to Disability Living Allowanc

2012-01-09T10:36:00.004Z

A Report on the proposed changes to Disability Living Allowanchttp://dlahelpgroup.com/downloads/Responsible%20Reform.pdf

Psychology of Pain: Fibromyalgia can no longer be called the 'invisible' syndrome

2011-12-16T10:13:00.001Z

Psychology of Pain: Fibromyalgia can no longer be called the 'invisible' syndromeUsing single photon emission computed tomography (SPECT), researchers in France were able to detect functional abnormalities in certain regions in the brains of patients diagnosed with fibromyalgia, reinforcing the idea that symptoms of the disorder are related to a dysfunction in those parts of the brain where pain is processed."Fibromyalgia is frequently considered an 'invisible syndrome' since musculoskeletal imaging is negative," said Eric Guedj, M.D., and lead author of the study. "Past imaging studies of patients with the syndrome, however, have shown above-normal cerebral blood flow (brain perfusion) in some areas of the brain and below-normal in other areas. After performing whole-brain scans on the participants, we used a statistical analysis to study the relationship between functional activity in even the smallest area of the brain and various parameters related to pain, disability and anxiety/depression."In the study, which was reported in the November issue of The Journal of Nuclear Medicine, 20 women diagnosed with fibromyalgia and 10 healthy women as a control group responded to questionnaires to determine levels of pain, disability, anxiety and depression. SPECT was then performed, and positive and negative correlations were determined.The researchers confirmed that patients with the syndrome exhibited brain perfusion abnormalities in comparison to the healthy subjects. Further, these abnormalities were found to be directly correlated with the severity of the disease. An increase in perfusion (hyperperfusion) was found in that region of the brain known to discriminate pain intensity, and a decrease (hypoperfusion) was found within those areas thought to be involved in emotional responses to pain.In the past, some researchers have thought that the pain reported by fibromyalgia patients was the result of depression rather than symptoms of a disorder. "Interestingly, we found that these functional abnormalities were independent of anxiety and depression status," Guedj said.

Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale

2011-12-01T19:49:00.001Z

Chronic Fatigue Syndrome and the CDC: A Long, Tangled TaleFrom comments: "Best article yet on why ME/CFS patients distrust the Center for Disease Control. The author has taken a very complex situation and nailed it. If only everyone in the ME/CFS community unstood the overall situation as well. Please stay with us Mr. Tuller as we need more to understand what's been happening, and to move forward with the equally complex research misunderstandings. This is a truly fine piece of reporting!"I agree with the commentator

Treatment Breakthrough (and Paradigm Shift) For CFS? Rituximab Trial Promises Hope

2011-10-29T06:12:00.001Z

Chronic Fatigue Syndrome (ME/CFS) News From Phoenix Rising - Treatment Breakthrough (and Paradigm Shift?): Rituximab Trial WorksHope and pray that this time there is indeed a breakthrough and paradigm shift

2011-10-28T19:07:00.001Z

i wish...please sign, share and spread as far as you can.... UK Government e-petitions need to secure at least 100,000 signatures before they are debated in Parliament. Two notable debates secured through e-petitions were the recent one calling for the release of all public papers relating to the 1989 Hillsborough football club disaster and this week's highly controversial debate on a European Union referendumThe Government to apologise for its treatment of ME / CFS patients - e-petitions

2011-10-28T19:05:00.002Z

Just search forUK Fibromyalgia Awareness Raising

2011-10-28T19:03:00.003Z

Please join the group to help raise awareness about Fibromyalgia - with particular emphasis on our annual awareness week every September. We also run a closed group for fibromyalgia where only group members see postings:https://www.facebook.com/groups/UKFibromyalgia/169265079831907/?notif_t=group_activity#!/groups/UKFibromyalgia/169265079831907/?notif_t=group_activity

Norway's Directorate of Health Apologises for Treatment of ME Patients

2011-10-23T06:11:00.001Z

European ME Alliance - Norway's Directorate of Health Apologises to ME Patients for Poor TreatmentA statement from the Norwegian Directorate of Health has been received where they apologise for not having provided the necessary and proper health services to persons with ME. Such a public apology from a governmental health agency has never occurred before.Bjørn Guldvog, Deputy Director General of theNorwegian Directorate of Health made the following statement "Jeg tror at vi, i for liten grad, har klart å møte menneskene som har kronisk utmattelsessyndrom på en god nok måte. Jeg tror at det er riktig å si at vi ikke har utviklet en god nok helsetjeneste for disse, og det beklager jeg." "I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."Can you see similar happening in the UK?

Mitochondria, not hypochondria - M.E.

2011-09-14T08:21:00.001Z

Central Government Issue 21 - Mitochondria, not hypochondria - Public ServiceUniversity of Hull Professor of Psychology Rhona Johnston argues against the widespread belief that ME/chronic fatigue is a psychological condition…

Low Dose Naltrexone

2011-09-13T18:57:00.001Z

ITV's Dr Chris Steele supporting the use of Low Dose Naltrexone (LDN)After some quality recomendations I mentioned this to my GP...the response...but that is only for heroin addicts!

An average day with fibromyalgia and M.E.

2011-09-08T07:07:00.001Z

Recently I realised that I am very wary of talking about my illness and how it affects when a family member asked for the umpteenth time what is wrong with me so i sent her the following description of my symptoms on just one day last week plus leaflets for Fibromyalgia and Myalgic Encephalomyelitis (M.E.) / Chronic fatigue syndrome (CFS) Thank you for wanting to know more, I am perhaps a little reluctant to talk about it all for a number of reasons, they are complex chronic illnesses with such a variety of symptoms that knowing where to start is a problem in itself and it would probably be incredibly boring for you plus it gets me down to dwell on it all too much. For example, if you were to ask how I am today… the honest answer is shattered as I have been awake since 2am, insomnia has returned recently as part of a more generalised flare up, after a fairly long period of sleeping better due to my GP prescribing nortryptaline after consulting a rheumatologist at the Friarage…Today I also have lower back pain which has been getting worse over the past week and cramps that had me doubled up this morning, probably due to my irritable bowel syndrome (IBS) which was diagnosed when I was about 22. The doctor recently changed my prescription for IBS as I was soiling myself, hope that settles down. I cannot take any anti imflammatories for the back pain as I was advised to stop them while I have symptoms of gastroesophagal reflux disease (GERDS) – the camera to have a look at my upper digestive tract next week is to check this out. I am thankful that it does not seem to be as bad as a previous period of digestive tract inflammation during which it was inflamed from mouth to bottom, a terrible time. Today the GERDS is tolerable with plenty of gaviscon. The dry eye syndrome is also annoying today but not as bad as it can get – in cold wind my eyes turn bright red and stream tears because they lack the natural oily lubrication….Plenty of neck pain too today plus a fuzzy headache, though again I am thankful it is not worse, as I also get visual migraines which affect my vision so I cannot read or watch TV nor drive..Basically, I never know how I am going to feel one day to the next, I did rest last Friday as we were looking forward to meeting up at the Village Inn but was still too tired and out of sorts to get ready and had to give up half way through doing my hair.I will stop there and let you read the leaflets, as to try to list all the symptoms I enjoy at different times would wear us both out.Hope all that helps explain a little, but if you want to ask me anything about M.E. or Fibro or managing these chronic conditions, fire away, by email is often easier for me especially if I have brain fog which can leave me feeling totally moronic,..Take careLoveJennie30th August 2011

Seven genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis

2011-09-08T06:51:00.000Z

Seven genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis: a detailed analysis of gene networks and clinical phenotypes -- Kerr et al. 61 (6): 730 -- Journal of Clinical Pathology

subtype 7 (pain, infectious, musculoskeletal, sleep, neurological, gastrointestinal, neurocognitive, anxiety/depression).

Conclusion: It was particularly interesting that in the seven genomically derived subtypes there were distinct clinical syndromes, and that those which were most severe were also those with anxiety/depression, as would be expected in a disease with a biological basis.

Subtype 7 sounds all too familiar although I manage ( Lord knows how) to keep depression at bay although I do get exceedingly tetchy at times....

Positive move to a new diagnostic, definition

2011-08-31T08:54:00.000Z

The Psychologist News

Experts from five continents have agreed upon on a new set of 'International Consensus Criteria' for myalgic encephalomyelitis (ME; also referred to as chronic fatigue syndrome or CFS), which they hope will improve clinical diagnosis and research into the condition.

Writing in the Journal of Internal Medicine in July (tinyurl.com/44tvs6v), the 25 co-authors said: 'The primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world.'

The new criteria are the latest in a series of attempts to nail down the hallmarks of ME/CFS. For example, last year saw a revision to narrow down the Canadian Case Definition, originally published in 2003, which has proved popular with many researchers. Bruce Carruthers, a psychiatrist in private practice in Vancouver, who was lead author on those 2003 criteria is also co-editor of the new International Consensus Criteria.

A key departure from its forerunners by the new International Criteria is that symptoms and signs need not have been present for six months before a diagnosis can be made. 'No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for six months,' the authors said.

However, the cardinal symptom remains 'Post-Exertional Neuroimmune Exhaustion' - a profound loss of energy following exertion, and impaired recovery. Also, the patient must have at least one symptom in each of the following categories: neurocognitive impairments (e.g. pain); immune, gastro-intestinal and genito-urinary impairments (e.g. food sensitivities); and energy production/ transportation impairments (e.g. laboured breathing).

The new criteria also urge that the CFS label be dropped. 'Using "fatigue" as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion,' argue Carruthers and his colleagues. 'Fatigue in other conditions is usually proportional to effort or duration with a quick recovery, and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion, and with reduced ability to undertake the same activity within the same or several days

Life Is Tough but Freedom Is Possible | Psychology Today

2011-03-30T19:34:00.000Z

Life Is Tough but Freedom Is Possible | Psychology Today

Life is tough. We're all subject to suffering, stress, anguish, and dissatisfaction. This is the essence of the Buddha's first noble truth. Given life's uncertainty and unpredictability, how could it be otherwise?

When I first encountered this teaching (many years before I became chronically ill), I didn't feel disheartened; I felt relieved. Finally, someone was describing this life in a way that fit a good portion of my experience. What a relief to know it wasn't just me or just my life! Do you know a single person, healthy or sick, who has not experienced suffering, stress, anguish, and dissatisfaction in his or her life?

timesofmalta.com - Allies pound Libya

2011-03-21T07:19:00.000Z

timesofmalta.com - Allies pound Libya

US tomahawk cruise missiles hit Libya late yesterday, the Pentagon said.

Washington has F-15 and F-16 fighter jets in Sicily, while the USS Barry and the USS Stout, both destroyers equipped with sea-to-ground Tomahawk missiles, are in the Mediterranean.

The USS Bataan, a helicopter-carrying amphibious assault ship, and two other vessels have also been deployed to relieve the USS Kearsarge and the transport docking ship USS Ponce in the Mediterranean. The Bataan was due to leave the state of Virginia last Wednesday.

The US also has three submarines in the Mediterranean capable of firing Tomahawk missiles.

The Puzzle of Chronic Fatigue Syndrome - WSJ.com

2011-03-07T21:18:00.000Z

The Puzzle of Chronic Fatigue Syndrome - WSJ.com

The Puzzle of Chronic Fatigue
For 20 years, a doctor in upstate New York has been trying to prove that an outbreak of the strange syndrome in his community was caused by a virus. Now new evidence is reopening the case..

excellent article

Great research project

2011-03-03T09:52:00.000Z

http://www.bond.edu.au/prod_ext/groups/public/@pub-burcs-gen/documents/genericwebdocument/bd3_016201.pdf

The International ME Research Collaboration (IMERC) confirms the strong and convincing scientific evidence of immune dysregulation in ME/CFS. Research will be encouraged into the blood-brain and other neural barriers, glial and neural cell histopathology, and neurotransmitter function including recently discovered neuropeptide function.
IMERC identified key priorities:

• The name myalgic encephalomyelitis ME would be adopted to better reflect the science and seriousness of the clinical picture in preference to the misleading label of chronic fatigue syndrome CFS.

John Falk: Chronic Fatigue Syndrome and Psychotherapy

2011-03-02T08:32:00.000Z

John Falk: Chronic Fatigue Syndrome and Psychotherapy

Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.

There is no known cause for CFS, and most terrifying from where I sit, no cure.

I've now decided to come out of the closest -- so to speak -- because it's ultimately self-defeating living a lie. Plus, someone has to start owning this syndrome in public. The more people who fess up to having it -- and there are many more who have it than let on -- the better off we all will be in the end.

When you have CFS one of the greatest battles you fight are the ignorant smirks and expressed disbelief of those who think it's all in your head; that is, those that don't live with you and live the truth of CFS everyday. Negativity and doubt amount to an energy drain you can ill afford. It's the reason I have refused up until now to identify myself as a person with CFS.

That which medicine can't explain we tend to label psychosomatic and blame the patient, a cruel phenomenon all too familiar to those who've had MS, rheumatoid arthritis, and lupus, and a myriad of other ailments in decades past.

Overview - Chronic Fatigue - Department of Medicine - School of Medicine - Stanford Medicine

2011-02-24T13:38:00.000Z

Overview - Chronic Fatigue - Department of Medicine - School of Medicine - Stanford Medicine

Has to be a positive move ( I hope)

ME CFS XMRV Expert Dr Paul Cheney - Hits Back on 'GET' Graded Exercise t...

2011-02-20T06:57:00.000Z

Finally a voice of reason

Professor Hooper’s Response to the MRC PACE Trial Press Release

2011-02-18T08:22:00.000Z

Professor Hooper’s Response to the MRC PACE Trial Press Release

Professor Hooper’s Initial Response to the MRC PACE Trial Press Release hosted by The Lancet

17th February 2011

1. The MRC PACE Trial used the Oxford criteria which do not define patients with ME/CFS. If used correctly, they exclude people with neurological disorders yet ME is a classified neurological disorder (WHO ICD-10 G93.3). The Trial’s “operationalised Oxford research diagnostic criteria for CFS” (Trial Protocol version 5, 2006, Section 7.2) were partly financed by the Chief Principal Investigator’s (Professor Peter White) own money (JRSM 1991:84:118-121). Professor White’s American peers have pointed out that the UK estimates (that are based on the Oxford criteria) are likely to include a high percentage of patients with psychiatric morbidity (“It is at least possible that the 2.54% to 2.6% rates in both the United States and Great Britain are due to a broadening of the case definition and possible inclusion of cases with primary psychiatric conditions. Some CFS investigators would not see this as a confounding problem because they believe that high rates of psychiatric comorbidity indicate that CFS is mainly a psychiatric disorder….Most importantly, the erroneous inclusion of people with primary psychiatric conditions in CFS samples will have detrimental consequences for both the interpretation of both epidemiological and treatment efficacy findings” (Professor Leonard Jason: Problems with the New CDC CFS Prevalence Estimates: IACFS/ME: 2007; Professor Leonard Jason: How Science can stigmatise: the case of Chronic Fatigue Syndrome. JCFS 2007:14:85-103). A Canadian psychiatrist who specialises in ME/CFS, Dr Ellie Stein, said on 25th May 2007 at the ME Research UK International Research Conference held at the Edinburgh Conference Centre, Heriot Watt University, that the Oxford criteria “could describe almost anybody. I do not believe that studies which use the Oxford criteria can be generalised to patients which most of us in this room would consider to have ME/CFS”. Indeed, on 14th July 2006 Professor White sought Ethics Committee approval to advertise his PACE Trial to GPs, asking them to refer anyone “whose main complaint is fatigue (or a synonym)”. The MRC PACE Trial entry criteria had an “open door” policy and did not identify people with ME/CFS (those supposedly under study in the PACE Trial), hence the reported results cannot be claimed to refer to ME/CFS patients.

2. The MRC PACE Trial excluded children and those who are severely affected. The results of any trial that excluded those who are severely affected cannot be taken seriously.

3. The MRC PACE Trial used no objective measures of outcome (ie. actigraphy) to show improvement or non-improvement and relies upon participants’ subjective answers to questionnaires. This is an unscientific way to gather evidence. There can be no empirical science without objective measures – objective measures are at the heart of the scientific method.

4. Professor White has claimed that CBT and GET can cure people with ME/CFS, for example, he claims that “a full recovery is possible” (Psychother Psychosom 2007:76(3):171-176) and the participants’ CBT Manual informs people that the PACE Trial therapies are curative and that “many people have successfully overcome their CFS/ME” with such behavioural interventions (“Information for relatives, partners and friends”, page 123). Moreover, in the NHS Plus Report, for which Peter White was an external assessor but failed to reveal that he was peer-reviewing his own work (Occupational Aspects of the Management of Chronic Fatigue Syndrome, October 2006), it was claimed that CBT/GET have been shown to be effective in restoring the ability to work in those who were absent from work. However, in a Statement in 2009 for the British High Court, his American peers doubted the possibility of the 23% to 25% recovery rate that Peter White claimed he had achieved (http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm). Commenting on her own recently co-authored paper on CBT (C. Lopez et al, Journal of Psychosomatic Research 2011: doi: 10.1016/j.jpsychores.2010.11.010 Epub ahead of print), Professor Nancy Klimas said on the record: “Dr White challenged me in a meeting a year ago saying nothing else had been published to deny this finding. So now you have a publication, written by a psychologist and well-regarded CBT expert to use when you want to argue that CBT helps people with this illness (as it does in every chronic disease model ever tested) but does not cure the illness” (http://networkedblogs.com/dG7pU).

5. The recent drugs industry scandal concerning Avandia has resonance for ME/CFS research. The editor of the BMJ, Fiona Godlee, concluded that pharmaceutical companies could not be trusted to generate honest research in respect of their own products and that independent scientific corroboration would always be required. The same principle should apply to non-pharmaceutical research, but the only research supporting CBT/GET has been generated by those who stand to gain most in professional and financial terms from its promotion. Similar independent corroboration should be required before experimental psychological interventions are applied nationally.

6. Professor White and his co-Principal Investigators all have financial links with the health insurance industry, a matter of grave concern to the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology (Dr Ian Gibson MP); a member of the Home Affairs Select Committee (Ann Cryer MP); a Minister of State for the Environment (The Rt Hon Michael Meacher MP); a former President of the Royal College of Physicians (Lord Turnberg); the Deputy Speaker of the House of Lords (the Countess of Mar), and a former Health Minister and Honorary Fellow of the Royal College of Physicians (Baroness Julia Cumberledge) (Gibson Inquiry Parliamentarians’ Report, 2006). In an obvious reference to Professor White, this Report stated: “There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies, particularly the company UNUMProvident. Given the vested interest that private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness, there is a blatant conflictof interest here. The Group finds this to be an area for serious concern…”. In Professor White’s case, this blatant conflict of interest remains unresolved, as he is Chief Medical Officer for the insurance giant Swiss Re, and another of the PACE Trial Principal Investigators, Professor Michael Sharpe, is associated with UNUMProvident.

7. There is existing acknowledgement that there is no long-term benefit from CBT:

· Professor Simon Wessely, who directed the PACE Clinical Trial Unit, is on record stating that CBT provides no effective treatment: in his Editorial (JAMA 19th September 2001:286:11) he stated that CBT and GET are only “modestly effective” and that neither is “remotely curative”.

Wessely is also on record as stating: “It should be kept in mind that evidence from randomised trials bears no guarantee for treatment success in routine practice. In fact, many CFS patients, in specialised treatment centres and the wider world, do not benefit from these interventions” (The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Marcus JH Huibers and Simon Wessely. Psychological Medicine 2006:36: (7): 895-900).

It would surely have been better if the (more than) £5 million spent on investigating what was already known had been spent on biomedical research into this complex disorder and in helping the severely affected (for instance, by providing domestic and personal assistance) and on effective pain relief for those afflicted.

8. The Adaptive Pacing Therapy (APT) used in the PACE Trial is not the same as pacing, a common sense approach that patients find helpful. The CBT Therapists’ Manual states about APT: “Activity is therefore planned”, which indicates a structured activity regime, and the APT Therapists’ Manual lists other requirements for APT including “plan set activity in advance” (so activity must be “set activity”, not simply what the patient may be capable of doing at the time); there must be “activity analysis”; APT participants must “constantly review model, diaries and activity” and there is the requirement to “involve relatives”, which is nothing like “doing what you can when you can”. Professor White is on record as being strongly opposed to pacing: “The theoretical risk of pacing is that the patient remains trapped by their symptoms in the envelope of ill-health” (Editorial: Postgrad Med J. 2002:78:445-446), so it was unlikely that he would find pacing to be effective. This should be contrasted with his American counterparts, who promote the “energy envelope” management strategy (The impact of energy modulation on physical function and fatigue severity among patients with ME/CFS. Leonard Jason et al; Patient Educ Couns 2009:77:237-241).

9. The MRC FINE Trial (sibling of the PACE Trial) failed spectacularly. It found that “pragmatic rehabilitation” (PR, based on CBT/GET) was minimally effective in reducing fatigue and improving sleep only whilst participants were engaged in the programme and that there was no statistically significant effect at follow-up. Furthermore, pragmatic rehabilitation had no statistically significant effect on physical functioning; equally, its effect on depression had diminished at follow-up. Moreover the other intervention being tested (“supportive listening” or SL) had no effect in reducing fatigue, improving physical functioning, sleep or depression.

10. The results of the PACE Trial may mean that patients who have genuine ME as opposed to chronic “fatigue” will continue to be denied appropriate investigation and treatment; they may be deprived of State benefits necessary for survival; their insurance claims may be rejected, and they will be condemned to an even lower quality of life.

11. The results of the MRC PACE Trial were anticipated to be in favour of the interventions being studied because the Trial is but one prong of a UK Blair Government three-pronged “integrated plan” to roll out CBT and GET across the nation for those with ME/CFS (Department of Health, 2004, Statement of Information released via the Welsh Assembly Disclosure Log 2296), the other two prongs being the NICE Clinical Guideline 53 published in August 2007 and the national “Fatigue” Clinics that cost taxpayers £8.5 million to deliver an intervention known to be ineffective and to have made at least 50% of those who have undertaken it actively worse. The “integrated plan” was designed to ensure compliance, so it was never in doubt that the PACE Trial results would conform to the “integrated plan”, as indeed is the case (ie. CBT and GET are said to be safe and moderately effective treatments for everyone with ME/CFS and to be better than APT).

12. On 12th October 1996, a Lancet editorial about the Joint Royal Colleges’ Report on CFS noted that psychiatrists had monopolised the research and management of ME/CFS: “The sixteen strong committee was top heavy with psychiatric experts, so the emphasis on psychological causes and management is no surprise. Charles Shepherd, Medical Director for the ME Association, told us: ‘The committee was rigged, with dissenting voices excluded’.” Unfortunately, nothing has changed in the fifteen years since. Except apparently the Lancet editorial policy.

For a detailed analysis of the whole PACE Trial, including evidence of the in-built facility for the DWP to have unrestricted access to participants’ medical notes; the fact that participants’ data was not kept securely and was stolen but they were not informed of this; the apparent failure of the Principal Investigators to adhere to the Declaration of Helsinki; the fact that some participants were told --- against the basic rules of any clinical trial --- that the intervention they were receiving was curative; the dilution of the entry criteria after the trial had commenced (so the second and subsequent tranches of participants were less ill and thus more likely to respond favourably to the interventions); the apparent lack of clinical equipoise, and the fact that the Trial manuals describe behaviours and techniques to be used by the Trial therapists that should not --- and cannot --- be considered ethical by an independent and reasonable observer, see “Magical Medicine: how to make a disease disappear”: http://www.meactionuk.org.uk/magical-medicine.htm .

Sent on behalf of:

Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD

Home:

2, Nursery Close
SUNDERLAND
SR3 1PA
Phone 0191-5285536
email: hoopersecundus@talktalk.net

YouTube - Latest WHAT ABOUT ME? teaser/trailer

2011-02-18T07:03:00.000Z

YouTube - Latest WHAT ABOUT ME? teaser/trailer

a must watch....

Adapting Successfully to Long Term Illness – May Start with Dumping the Denial

2011-01-19T16:46:00.000Z

Another must read for anyone struggling with pacing

Adapting Successfully to Long Term Illness – May Start with Dumping the Denial

ADAPTING TO FIBROMYALGIA

When I received the diagnosis of fibromyalgia in February of 2001, I realized I had been unknowingly living with illness and denying it most of my life.

Even as a child, I felt like my nerves were all prickly and fuzzy like static buildup. I lived with pain, stiffness, fatigue and troubled sleep. Into adulthood, weather changes, certain foods, lights, sound, the touch of my clothes, even thinking hurt. Every day was an exhausting struggle.

But the worst would pass, and I would be told how healthy I looked and that I was just out of shape and needed to push myself harder, and that there was really nothing wrong with me and I was just too sensitive.

I accepted this view of myself and lived in denial of the truth of my experience

Psychological abuse - Wikipedia, the free encyclopedia

2011-01-19T13:04:00.000Z

Psychological abuse - Wikipedia, the free encyclopedia

Abusers may aim to avoid household chores or exercise total control of family finances. Abusers can be very manipulative, often recruiting friends, law officers and court officials, even the victim's family to their side, while shifting blame to the victim.[33][34]

He who cannot do what he wants must make do with what he can.

2011-01-19T07:51:00.000Z

He who cannot do what he wants must make do with what he can.
- Terence

So poignant for anyone with M.E. - pacing may prevent avoid the 'boom-bust' cycle of overexertion and relapse but leads inevitably to a restricted lifestyle wherein the everyday joys of bird song or the first flowers of spring for example have to be fully appreciated or you would go stir crazy

whataboutme_website

2010-12-08T16:24:00.000Z

whataboutme_website

What About Me? Trailer - UK from Double D Productions on Vimeo.

US survey of women with fibromyalgia highlights its profound impact & their struggle for acknowledgment

2010-12-08T10:11:00.000Z

US survey of women with fibromyalgia highlights its profound impact & their struggle for acknowledgment

As a result of fibromyalgia:

• Two thirds (67%) of respondents say they are unable to keep up with household chores,

• Nearly half (47%) report that their work life or career has been negatively affected,

• And two in five (42%) spend less quality time with their friends.

• Nearly one third (31%) say fibromyalgia has negatively affected their ability to experience intimacy.

Yvette Cooper & ME: Clarification from Dr William Weir

2010-12-08T07:58:00.000Z

Yvette Cooper: 'There's nothing better than politics' | Politics | The Guardian

Clarification from Dr William Weir

Margaret Williams 7th December 2010

Dr William Weir, Consultant Physician of 10, Harley Street, London W1G 9PF
(who specialises in ME/CFS) wishes to correct the statement made in an
article in The Guardian on 4th December 2010 by the Shadow Foreign
Secretary, Yvette Cooper MP.

In an interview (?There?s nothing better than politics?), Yvette Cooper MP
is quoted as saying about the time she suffered from ME:

"... But my consultant did say that over 90% [of ME patients] made a full
recovery, and it never came back. It's one of those things you hope people
suffering from it now will realise..." (
http://www.guardian.co.uk/politics/2010/dec/04/yvette-cooper-guardian-interview
).

It is in the public domain that Yvette Cooper?s consultant was Dr William
Weir, since Ms Cooper herself made this information public in an interview
about her illness in the Daily Mail about ten years ago.

Dr Weir is concerned about this statement in two respects: (1) he did not
give Ms Cooper such advice and (2) it is untrue that 90% of ME/CFS patients
make a full recovery.

Dr Weir points out that the statistic Ms Cooper is probably (mis)quoting is
?Of those who recover, 90% tend to do so in the first year of the illness?,
but in those who remain unwell after the first year, there is a lesser
tendency towards recovery.

It should be said that at the All Party Parliamentary Group on ME (APPGME)
meeting held on 21st October 2009 in Committee Room 21 at the House of
Commons, Ms Cooper was made aware of the many problems faced by people with
ME/CFS in relation to the Department for Work and Pensions, specifically the
way in which a patient?s own GP and specialist were progressively being
removed from the opinion-gathering process and replaced by doctors who know
nothing of the patient?s medical background and even less about ME/CFS. In
response, she noted these concerns but did not indicate that there would be
any shift in the DWP position (ME Association summary of APPGME meeting:
http://tinyurl.com/ycnw6q5).

Permission to repost

Gearing Up for the Big Search for XMRV - Health Blog - WSJ

2010-12-01T07:01:00.000Z

Gearing Up for the Big Search for XMRV - Health Blog - WSJ

Lipkin tells the Health Blog that the study focuses on whether XMRV or other viruses in the same family are found in higher frequency in patients with CFS.

As a starting point, everyone had to agree on how to define a CFS patient for the purposes of the study. The issue has been highly contentious and Lipkin says they tried to agree to criteria for patient selection that “includes everyone’s viewpoints.”

The solution: the study will seek to enroll people who in addition to meeting criteria for two widely used, symptom-based definitions of CFS, showed signs of infection — such as a sore throat or tender lymph nodes — around the time they developed CFS. The thought is that if there is a viral link to CFS, it’s most likely to show up in those patients.

More work still needs to be done. The physicians participating in the study will meet with Lipkin in coming weeks to develop a standard checklist for evaluating patients. The scientists are still working out a common protocol for how they handle and process the blood. But Lipkin tells the Health Blog that everything they are doing is designed to make it possible to finally end the debate over whether XMRV is associated with CFS

Could a Virus Cause Chronic Fatigue Syndrome? - Newsweek

2010-12-01T06:45:00.000Z

Could a Virus Cause Chronic Fatigue Syndrome? - Newsweek

Validation In a Virus?
For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.
(Page 1 of 2)

Mitsuko Nagone / Flikr-Getty Images

It’s hard, even years later, to read Laura Hillenbrand’s wrenching description of her pain. Hillenbrand, 43, is the author of Seabiscuit and the new and widely acclaimed book Unbroken, an account of the World War II bombardier Louis Zamperini. But she is also the most articulate spokesperson for chronic-fatigue syndrome, the mysterious disorder that has plagued her since college. In an essay she wrote for The New Yorker in 2003, Hillenbrand described her aching joints, swollen glands, nausea, and exhaustion. The debilitating and unproductive trek from doctor to doctor. The disregard, the shame, and the elusive quest for relief. Chronic-fatigue syndrome plunged Hillenbrand into a state of disorientation; words looked like meaningless shapes; thoughts disappeared. “I was at a sensory distance from the world,” she wrote, “as if I were wrapped in clear plastic.”

It is a metaphor for the illness itself. For decades, chronic-fatigue syndrome has been mired in layers of medical and scientific uncertainty. Since Hillenbrand’s symptoms emerged in 1987, doctors’ awareness has grown and researchers have come up with tantalizing hypotheses about how the disorder has made as many as 4 million Americans sick. But every advance seems to come with a caveat, including a recent series of dramatic and confounding discoveries. In August a team of researchers led by the National Institutes of Health and the FDA announced that they’d found evidence of a family of retroviruses in the blood of patients with chronic-fatigue syndrome. The study mirrored an earlier report, published last year, which was celebrated by patients because it raised the possibility of pinpointing a cause and a treatment. But a third major study published this summer by the Centers for Disease Control and Prevention found no such link. The big hope now is that a new nationwide investigation, directed by a leading virologist at Columbia University, will bring greater urgency and find some clarity within the next 12 to 18 months. “Cutting-edge science is often not definitive,” says Dr. William Schaffner, an infectious-disease expert at Vanderbilt University School of Medicine. “Keep your seat belts tight.”

It’s been a long ride. Since the illness first surfaced in the U.S. in the ’80s, chronic-fatigue patients have endured skepticism from doctors, who have not known what to make of a constellation of symptoms that has no known cause, no diagnostic test, and no specific treatment. Many patients, including Hillenbrand, have been referred to psychiatrists. For years the disorder was not a priority at the highest levels; in 1999 a government audit found that the CDC had diverted millions of chronic-fatigue research dollars to other programs. The complex disorder continues to baffle the medical community because symptoms can vary dramatically over time and the spectrum of patients is vast. Some hold it together during the week but collapse on weekends; the most severely affected are bedridden. “Even though chronic-fatigue syndrome isn’t a death sentence, it’s a life sentence,” says Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a leading funding and advocacy organization. “People lead diminished lives because of the illness.”

What patients want is scientific validation. In the study published last year, researchers led by Judy Mikovits, of the Whittemore Peterson Institute (WPI) in Reno, Nev., identified XMRV, an infectious retrovirus in the same family as the AIDS virus, in the blood of 67 percent of patients suffering from chronic-fatigue syndrome. “There’s no question it’s in the people we found it in,” says Mikovits. The NIH study detected the DNA of viruses related to XMRV in 87 percent of its patients, compared with only 7 percent of healthy controls. But other studies, including the CDC’s report and several in Europe, found nothing. Nobody knows why with any certainty. Viral testing methods differ among labs. It’s also possible that the virus is endemic to certain geographic areas and not to others. Perhaps most significant: some patients, including those studied by the WPI and the NIH, are much sicker than others. “It just highlights that there’s still a lot we don’t know about this virus,” says the CDC’s Dr. Steve Monroe.

Including: how do humans get XMRV in the first place? “No one has any idea,” says Mikovits. Researchers emphasize that it’s still not known if the virus family detected actually causes chronic-fatigue syndrome. “It could be a bystander effect,” says the NIH’s Dr. Harvey Alter. But the possibility of infection has raised concern. Earlier this year an international blood-bank association urged members to discourage chronic-fatigue patients from donating because of the potential risk of transmitting the virus. The American Red Cross goes even further, deferring indefinitely any donor who reveals she has been diagnosed with chronic-fatigue syndrome or an XMRV infection.

Today, doctors prescribe an array of treatments—including exercise programs, cognitive behavioral therapy, painkillers, and sleep medications—to relieve symptoms. But if chronic fatigue is caused by a virus, it raises the question: should patients be on antiretrovirals, the same drugs prescribed to people with HIV? Some chronic-fatigue patients are already taking them off-label, but they can have serious side effects. Dr. Andrew Mason, a virologist at the University of Alberta in Canada, says it’s time to launch a well-planned clinical trial to test the drugs’ effectiveness. It wasn’t until antibiotics were prescribed to treat peptic ulcers, says Mason, that the medical community finally accepted bacteria as the culprit. “It’s the only way to win this battle,” he says.

But, as with so many aspects of chronic-fatigue syndrome, there is disagreement here, too. Other specialists say the science needs to be on firmer ground before trials are launched. “Patients are clearly ill and suffering, and we need to address treatment as rapidly as we can,” says Dr. Ian Lipkin, director of Columbia’s Center for Infection and Immunity. “But the first order of business is to determine if the association is real.”

In early November U.S. researchers met with Lipkin, who is spearheading the next phase of research. The plan is to collect blood samples from at least 150 patients across the U.S. with similar disease characteristics, then compare them with healthy controls matched for age, sex, and geography so that scientists can sort out the confusion and establish as conclusively as possible if a viral link is valid.

Scientific discovery is never straightforward, much as we all want it to be. More often than not, it’s a tangle of hunches, studies, disagreements, false starts, tangents, and frustrations. One day, everybody hopes, the layers of wrapping will come off. The cause—or, very possibly, causes—of chronic-fatigue syndrome will become clear. Treatments will become available. And Laura Hillenbrand and millions of others can start reclaiming their vitality and their lives.

BBC News - Dorset woman with severe ME 'left to rot by the NHS'

2010-12-01T06:42:00.000Z

BBC News - Dorset woman with severe ME 'left to rot by the NHS'

A Dorset woman with severe ME who has been unable to leave her bed for eight years has been "left to rot" by the NHS, her family has said.

CFS Central: NOV 29 PROTEST AT BARTS

2010-11-28T03:53:00.000Z

CFS Central: NOV 29 PROTEST AT BARTS

Frustrated by the care at Barts, O’Grady made an appointment with a rheumatologist at a different hospital, who prescribed anti-inflammatories to treat the pain in her back and neck, which proved helpful. When she had given her Barts doctor the same list of rheumatologic symptoms, “he looked bored, said nothing and started cleaning his fingernails,” she recalls. “Another doctor claimed they didn’t need to run many tests on ME/CFS patients because “they would know the results simply by looking at the patients.”

For more information on the protest:
http://www.notsonice4me.co.uk/BARTS_PROTEST.htm

Raygent » Biomarkers and Blood Screening Tests: GenProbe (GPRO) and Genzyme(GENZ)

2010-11-28T03:52:00.000Z

Raygent » Biomarkers and Blood Screening Tests: GenProbe (GPRO) and Genzyme(GENZ)

Blood Supply Screening Test-XMRV

XMRV is a retrovirus that is linked to chronic fatigue syndrome and there is concern that millions are infected. If XMRV can be transmitted through sexually or through transfusions there may be a need to protect the blood supply with a screening test similar to current test for HIV and hepatitis. Three companies are working on a test: Abbott Labs (ABT), GenProbe (GPRO) and Roche Molecular Diagnostics. GenProbe is a leader in blood screening with their Tigris diagnostic system that has 2009 revenues of $450M of which more than 50% are for blood screening.GenProbe is partnered with Novartis (NVS) and is developing a next generation blood screening system called Panther.

Next month on Dec 14-15 the FDA Blood Products Advisory Committee will feature scientific data and research regarding MLV-related (MLV-murine leukemia virus) Human Retroviruses such as XMRV. Recently the National Cancer Institute reported on a test that discriminates between mouse retroviruses and XMRV.

Blood Products Advisory Committee > December 14-15, 2010: Blood Products Advisory Committee Meeting Draft Agenda

Minutes of the All Party Parliamentary Group on ME, 9 November 2010 | ME Association

2010-11-19T07:50:00.000Z

Minutes of the All Party Parliamentary Group on ME, 9 November 2010 | ME Association

Whole page is worth reading, at least we are being debated...

"Concerns were raised about the delegation of responsibility from central Government to local care commissioners which has led to wide variations across England in the quantity and quality of specialist health care provided to M.E. patients. Children with M.E. and the severely affected are particularly badly provided for by the NHS in most areas."

Why are we banned from donating blood if we have CFS/ME?

2010-11-14T07:23:00.000Z

SCOTTISH PARLIAMENT
WRITTEN ANSWER
11 November 2010

Index Heading: Health and Wellbeing

Mary Scanlon (Highlands and Islands) (Con): To ask the Scottish Executive
what evidence supports the banning of people with myalgic encephalomyelitis
from giving blood.

(S3W-37260)
Ms Shona Robison :

Following a recommendation in July 2010 by UK Blood Services Standing
Advisory Committee on the Care and Selection of Donors and the Joint
Professional Advisory Committee (JPAC), from 1 November 2010 across the UK,
those with a history of myalgic encephalomyelitis/chronic fatigue syndrome
(ME-CFS) are permanently deferred from donating blood for the protection of
their own health. This decision was made to bring the donor deferral
criteria for those in this group into line with those with other relapsing
conditions, such as multiple sclerosis.

SCOTTISH EXECUTIVE

Parliamentary Question: Lightning Process pilot study ethical approval | ME Association

2010-10-27T18:18:00.000Z

Parliamentary Question: Lightning Process pilot study ethical approval | ME Association

Questions for Written Answer [House of Lords]

Tabled on 21 October and due for answer by 4 November.

The Countess of Mar to ask Her Majesty’s Government what assessment they have made of whether the decision by the South-West Research Ethics Committee to approve a pilot research study into the effects of the Lightning Process on children is consistent with the ethical guidance issued by the Medical Research Council to the effect that clinical trials should only include children where the relevant knowledge cannot be obtained by research on adults, and that research involving adults cannot provide the same benefits.

UK bans ME/CFS blood donations as of November 1, 2010 – Department of Health announces

2010-09-02T08:15:00.000Z

UK bans ME/CFS blood donations as of November 1, 2010 – Department of Health announces

The ME Association (www.meassociation.org.uk) posted the following on Friday, Aug 27

The Department of Health has decided to ban blood donation permanently from all prospective donors in the UK who report they have had ME/CFS from 1 November this year. The decision was announced in an email sent to The ME Association today by the Department's Director of Health Protection.

In a brief email, Clara Swinson writes:

"As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.

"The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC)."

The announcement has already been welcomed by contributors to ME/CFS internet forums around the world as further indication that the physical nature of the illness is being taken ever more seriously. Clara Swinson's email does not reveal the extent to which studies into the XRMV virus figured in Department of Health's thinking.

ME Free For All : Re: When doctors cannot diagnose disorders

2010-09-02T07:19:00.000Z

ME Free For All : August 2010

Re: When doctors cannot diagnose disorders, Sunday Times of Malta, 29 August 2010

The headline of Nikki Abela Mercieca's article (When doctors cannot diagnose disorders, Sunday Times of Malta, 29 August 2010), about the difficulty of getting a diagnosis of M.E. (Myalgic Encephalomyelitis) may be read as an incomplete sentence, to which the consequence could be added: that millions of people, worldwide, are left, as our former Chief Medical Officer, Sir Liam Donaldson, acknowledged, in the wilderness. They become isolated because, when all the blood tests, to rule out other illnesses, have been conducted, further investigation ceases. Patients are too ill, often housebound or bedridden, to be able to get to the doctor, who has nothing to offer them anyway and the doctor won't make a house call for the same reason.

Nikki might have chosen "will not", rather than "cannot" because some doctors, all over the world, do diagnose Myalgic Encephalomyelitis and then the consequence becomes quite different: patients have a diagnosis that they are genuinely ill, not merely experiencing fatigue, due to overexertion, which might be remedied by lifestyle changes and that they are definitely not malingerers, hypochondriacs, or attention seekers. It also allows doctors and researchers, who do not assume that because a physical cause has not been found and therefore, the illness must be of psychiatric origin, the alternative option that there is an organic one yet to be discovered. But the fact that Nikki refers to the doctor who diagnosed Nicola Reiss with M.E. as "brave" suggests that there is something defiant or rebellious about those who challenge the medical establishment that M.E. is best thought of as a Chronic Fatigue Syndrome and simply managed with Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). a principle generally followed, despite there being no reduction in those remaining ill for decades. Lamentably, there is no government funding for those wishing to conduct the promising biomedical research, which may provide the solution..

One would think that a finding as exciting as the presence of a new retrovirus, XMRV, in more than two-thirds of sufferers but only 3 or 4% of matched healthy people (Lombardi et al, October 2009), would stimulate trials to discover whether there is a causal relationship and possible treatment by antivirals. There are some intelligent hypotheses, such as that XMRV, might be a catalyst for other viruses lying dormant, or recurring, which might explain, for example, why some people who become infected with Epstein Barr (Glandular Fever), Herpes Zoster (Shingles), Flu or other viruses get over them, never to be troubled again, while others have M.E., possibly for life. But the work has had to be largely conducted using private or charitable funding, against a sceptical and sometimes hostile opposition from the established psychiatrists, whose theories have never been so contested.

It is debatable whether, as the unnamed doctor in Nikki's article asserts, "we cannot endorse what we cannot see", since we accept other illnesses without perfect knowledge but it is unforgivable to neglect searching for a cause when " what we know for sure is that they are suffering."

Yours sincerely
Dr John H Greensmith
ME Free For All.org

PNAS Paper media blackout in UK???

2010-08-28T06:43:00.001Z

"Jean Harrison" writes via COCURE@LISTSERV.NODAK.EDUI

"I've heard from quite a few British patients who noted that the major UK news outlets have not been reporting the findings of the PNAS paper. Apparently articles articles on scientific advances are vetted by the Science Media Centre, Science Advisory Panel: http://www.sciencemediacentre.org/pages/about/sap.htm . Perhaps there is a group above this centre to which appeals could be made?"

With Professor Simon Wessely, Institute of Psychiatry, King’s College, London, on there I am not surprised, tad audacious though!!!

Study Links Chronic Fatigue Syndrome to a Class of Virus - NYTimes.com

2010-08-24T05:15:00.000Z

FINALLY!

Study Links Chronic Fatigue Syndrome to a Class of Virus - NYTimes.com

When the journal Science published an attention-grabbing study last fall linking chronic fatigue syndrome to a recently discovered retrovirus, many experts remained skeptical — especially after four other studies found no such association.

Now a second research team has reported a link between the fatigue syndrome and the same class of virus, a category known as MRV-related viruses. In a paper published Monday by The Proceedings of the National Academy of Sciences, scientists found gene sequences from several MRV-related viruses in blood cells from 32 out of 37 chronic-fatigue patients but only 3 of 44 healthy ones.

More Clues To Fibromyalgia Pain

2010-08-10T06:36:00.000Z

More Clues To Fibromyalgia Pain

Fibromyalgia patients have more "connectivity" between brain networks and regions of the brain involved in pain processing, which may help explain why sufferers feel pain even when there is no obvious cause, a new study suggests.

Study involving children and the Lightning Process is unethical, says joint charity statement

2010-08-06T08:42:00.000Z

Study involving children and the Lightning Process is unethical, says joint charity statement

A plan to recruit children with ME/Chronic Fatigue Syndrome to a scientific trial comparing the efficacy of an unproven psychologically-based training programme with specialist medical care is “unethical”, say two of Britain’s leading ME/CFS charities – The ME Association and the Young ME Sufferers Trust.

In a joint statement issued yesterday evening (4 August 2010), the two charities say:

We are issuing this joint statement due to widespread public concern, together with our own serious reservations, about a forthcoming study of the psychologically-based Lightning Process on children.

Norwich centre for ME sufferers planned - Norfolk News - EDP24

2010-08-04T07:47:00.000Z

Norwich centre for ME sufferers planned - Norfolk News - EDP24

..."talks between Dr Ian Gibson, the national Invest in ME charity, the UEA and NHS Norfolk have taken place with the view of setting up a centre to properly research, diagnose and treat the illness. If it goes ahead, it will be the first centre of excellence in the country and firmly put Norwich on the map of advancing medicine and healthcare.

ME (myalgic encephalomyelitis), also known as chronic fatigue syndrome, is a contentious illness because for years clinicians and other medical professionals refused to recognise it and it was often dismissed as “yuppie flu”, despite causing years of complex problems such as overwhelming tiredness, swollen glands, painful muscles and joints, and severe sleep difficulties.

However, years of campaigning and hard hitting inquiries in the condition - one of which was held by former Norwich North MP Dr Ian Gibson - has raised further awareness and understanding of the condition.

Dr Gibson said: “This centre could totally change the lives of people with ME. At the moment there is no proper diagnosis for ME and treatment is patchy. We would do research here and, as this develops, we can treat patients from all over the country and the rest of Europe."

Cannot come to soon......to all those who do not believe until ME affects themselves and those close to them...I say open your minds!

More Evidence of the Organic Nature of Multiple Chemical Sensitivity

2010-07-07T07:06:00.000Z

More Evidence of the Organic Nature of Multiple Chemical Sensitivity

"Attention is drawn to a recent paper which serves to confirm that multiple chemical sensitivity (MCS), a well-documented component of myalgic encephalomyelitis (ME), is not a somatoform disorder or any other kind of psychiatric disorder as asserted by certain psychiatrists, most notably those of the Wessely School.

The paper (Biological definition of multiple chemical sensitivity from redox state and cytokine profiling and not from polymorphisms of xenobiotic-metabolizing enzymes; De Luca C et al: Toxicol. Appl. Pharmacol 2010; doi:10.1016/j.taap.2010.04.017) supports the work of Professor Emeritus of Biochemistry and Basic Medical Sciences at Washington State University, Martin Pall, who proposed that MCS is caused by toxic chemical exposure leading to toxic brain injury.

Based on the results obtained, the authors suggest that the serious and multiple dysfunctions of the chemical defence system found in MCS patients may not depend on genetic defects but on non-genetic modifications of metabolising/antioxidant enzyme expression and/or activity. They conclude that MCS is characterised by a number of biochemical and immunological disturbances and that these metabolic and immunological parameters should be taken into consideration in both the biological and clinical/laboratory diagnosis of MCS."

FM/CFS/ME RESOURCES - Keeping A Symptom Journal

2010-06-26T07:39:00.000Z

FM/CFS/ME RESOURCES - Keeping A Symptom Journal

Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'

2010-06-24T06:57:00.000Z

Original Press Release from the Netherlands: FDA and NIH confirm XMRV findings'

Yipee....to tired to say more but maybe this takes us closer to the tippong point

Rough days

2010-06-13T08:02:00.002Z

Despite still trying to rest more and play more it has beena rough week for me...

Fierce visual "migraine" Thursday morning which left me drained and probably not safe to drive.

Truly terrible stomach cramps Friday evening & night (no obvious trigger)which left me asleep in bed for most of the past 30 hours.

Today, drained and headache...

CFS Central: BLOOD FEUD

2010-06-11T08:40:00.000Z

CFS Central: BLOOD FEUD
Great summary!

Abundant Evidence ME/CFS is Neurological - Harvard's Dr. Komaroff

2010-06-10T06:45:00.000Z

Abundant Evidence ME/CFS is Neurological - Harvard's Dr. Komaroff

Notable Quotes
In answer to question # 21 in the Q&A session – “Would you classify CFS as a neurological disease?” Dr. Komaroff stated:

"I would certainly say, as I have said today, that there is now abundant evidence of measurable abnormalities in the central nervous system and the autonomic nervous system in people with this illness. So that makes it neurological. That's why I think it makes sense, as Dr. Gurwitz said, to call it Myalgic Ecephalomyelitis or Encephalopathy, because I think those two words adequately classify or describe an underlying biology that tests have shown to be the case."

In answer to question # 26 - “With respect to the study on the presence of metabolites after exercise, how do patients with depression compare to CFS patients?” Dr. Komaroff stated:

“As a doctor who has taken care of patients with major depression for many years I can’t recall a single instance of someone with major depression saying, ‘The strangest thing has been happening to me, doctor, whenever I do anything, any physical exertion, the next day I feel completely beat up.’ I have never heard that from any patient with any illness other than chronic fatigue syndrome.”

WPI says New XMRV Diagnostic Test to Be Available by July 1; Announces Arrangements for US & European Testing

2010-06-04T06:29:00.000Z

WPI says New XMRV Diagnostic Test to Be Available by July 1; Announces Arrangements for US & European Testing

WPI says New XMRV Diagnostic Test to Be Available by July 1; Announces Arrangements for US & European Testing
June 2, 2010

According to a news release published June 1 by the viral testing laboratory VIP Dx (www.vipdx.com):

1. The non-profit Whittemore-Peterson Institute reports that a virus culture test to diagnose XMRV will be available by July 1.

2. VIP Dx will be acquired by & move to the WPI’s new Reno-based Center for Molecular Medicine in August, taking the name Unevx.

3. Testing will be extended to European patients via a non-exclusive licensing agreement with R.E.D. Labs in Belgium.

American Chronicle | The Most Effective Rated Treatments for Chronic Fatigue Syndrome

2010-06-01T13:05:00.000Z

American Chronicle | The Most Effective Rated Treatments for Chronic Fatigue Syndrome

Norwegian scientists surveyed 828 chronic fatigue syndrome patients to find out what treatments were most and least helpful.

Rest was rated the most helpful by 97% of participants, followed by pacing at 96%.

GET & CBT are slated

'She went into a hellhole': A mother's candid account of her daughter's battle with ME

2010-05-17T06:34:00.001Z

Criona Wilson recalls her daughter's losing battle with ME: She went into a hellhole | Mail Online

Aged just 32, Sophia Mirza lost her life to ME – the first time the condition was recorded as an official cause of death in the UK. Here, her mother talks to Louette Harding about Sophia’s excruciating final years and the torment they suffered at the hands of a health profession that didn’t know how to treat her illness

Read more: http://www.dailymail.co.uk/home/you/article-1277519/Criona-Wilson-recalls-daughters-losing-battle-ME-She-went-hellhole.html#ixzz0oAKwbbbq

A disgrace, pure and simple

Nick Clegg on ME research

2010-05-05T06:33:00.001Z

"Dr John"
: CO-CURE@LISTSERV.NODAK.EDUCC: all my M.E. contacts; Phil Parker; Dr Esther Crawley, with permission for all to forward and re-publish wherever they choose.

Dear Esther,

If you are elected as MP for Luton South on Thursday 6 May 2010, I hope that your constituents will think that you serve them well, properly represent them and communicate with them, more democratically than in another, much wider, constituency that you already represent, albeit in an unelected capacity: the M.E. Community.

For background information, I am a Research Psychologist, PhD, who has been unable to work, or live any normal kind of lifestyle, since being diagnosed with M.E. (and I mean Myalgic Encephalomyelitis, not any other kind of variant, CFS, PVFS, CFIDS etc. and I have had all other known illnesses of both physiological and psychiatric origin ruled out) in 1988 - 22 years, at the time of writing.

I have been frustrated, on several occasions, at not being able to respond to comments you have made, in one medium or another, that are at least controversial; in some cases inadvisable or even potentially harmful. I will restrict the examples to just a few, in this letter, to illustrate the broader principle: that I believe your celebrity to be unfair and unhelpful to people with M.E. unless supported by scientific evidence.

On the day after Kay Gilderdale's trial, 26 January 2010, you appeared on several television programmes including ITV, BBC and the Jeremy Vine radio show, BBC Radio 2, on which you optimistically asserted that 80% of M.E. sufferers will make a recovery. At the same time, on Scottish Television, Dr Debbie Wake, told viewers that "very few ever recover, very few return to work." Now, with such polarised views, both cannot possibly be right. So whose version can we believe? Well, to all of the people who have suffered from M.E. for decades and those who care from them, it feels like Dr Wake is nearer the true mark. The truth is that nobody really knows. And why? Because the only official figures we have, from the Department of Health, are an estimate, based upon a similar estimate made by the Centers for Disease Control (CDC) in America; in other words, a guess based upon another guess. But you must have got this figure from somewhere, so will you please give us the reference to the source you are citing, so that we can check its reliability, or will you say that it has no more validity than an opinion, or withdraw it. Doing nothing in response to my request would not be a fair option.

I am pleased to have the opportunity of writing to you today, in your capacity as an Independent political candidate for the seat of Luton South, to ask your opinion of the intentions expressed in this letter (full text below) from Nick Clegg to one of his constituents who has M.E., in which he questions the NICE (National Institute for Health and Clinical Excellence) Guidelines of 2007 and calls for an independent scientific committee to monitor biomedical research:

Dear Mr xxxxxx

Thank you for your correspondence regarding some of the problems that are currently causing concerns for people with ME/CFS including inadequate research and the recent NICE guidelines on the subject.

Unfortunately, a ballot to secure an adjournment debate on these issues, scheduled for the week commencing November 19, was unsuccessful.

As I'm sure you are aware, one of the main obstacles to the adequate treatment of ME is the lack of knowledge and consensus about the disease. There are many theories as to the causes of the disease but no conclusive proof to fully support any of them. This is why it is vital that more research is done into the causes and progression of this difficult to diagnose condition.

What is not in doubt is the very real physical and psychological damage caused by this disease. The Liberal Democrats have long argued that funding and research must be focused on the `bio-medical' factors involved and not just simply managing the `psychological' issues.

Whilst I welcome the fact that NICE conducted an investigation into ME/CFS, I do understand and empathise with the concerns raised about the findings. The recommendation that patients with ME/CFS be treated using an `Activity Management Programme' made up of Cognitive Behavioural Therapy and Graded Exercise Therapy does not follow the World Health Organisation guidelines which categorise ME as a neurological condition. In failing to recognise the bio-medical problems of ME sufferers, the NICE guidelines also fail to recognise the needs of ME sufferers.

To help address the unique challenges posed by a complex and poorly defined condition like ME, the Liberal Democrats believe in the establishment of an independent scientific committee to oversee all aspects of ME research. We would also like to see the government and the Medical Research Council work with ME sufferers and biomedical researchers in order to achieve a proper understanding of the condition, challenge unjust perceptions and consider the issue of research funding.

Whilst we welcome the establishing of local centres to focus on ME, we feel the NHS is still too centralised and too unresponsive to the needs of patients and families. We believe the special needs of those suffering conditions like ME can be better addressed by empowering patients and making the NHS more accountable at local level.

Thank you again for taking the time to contact me about this issue.

Yours sincerely
Nick Clegg MP

May I ask, What would your policy, as an Independent MP, be? How would you lobby your own MP to represent you?

I have wanted to reply to some controversial points that you - and sometimes, your daughter Emily (Wilcox) - have made in articles, especially in the Daily Mail, for example about Emily's recovery after treatment by Professor Findlay and to check whether you are advocating Cognitive Behaviour Therapy (CBT) and Graded Exercise therapy (GET), both recommended by the NICE guidelines, despite all evidence showing that CBT is ineffective and GET makes a majority of M.E. sufferers worse, some irrecoverably so? For someone with such a high celebrity profile, you are very difficult to reach by e-mail, except perhaps via a showbiz agent, which is not appropriate for this purpose. You defeat every search option I know.

My most serious complaint about lack of a fair right of reply is with respect to the Lightning Process, which you have endorsed on their website for some time and do now in other print and broadcasting media, including the post Kay Gilderdale trial interview. I have tried to get an e-mail address for you from the Daily Mail, Sue Peart, Editor of the Mail on Sunday and from several journalists, who wrote pieces with you and Emily, before finally asking Phil Parker, inventor of the Lightning Process, to forward my e-mails to you and Austin Healey. I am especially annoyed that you have not replied to any of the three e-mails that I sent to Phil Parker, including two about the proposed research with children, under the direction of Dr Esther Crawley and an earlier one, around March 2009, following an article "Jane's Flash Recovery" (in You magazine of the Mail on Sunday, 22 February 2009). I should say that none of the others replied either but all still continue to advocate it and/or make careers from it.

I do not think this is in the spirit of democracy and fair right of reply for which, I presume, you are standing in Luton South and I hope that you will not ignore this and respond to my personal appeal for a reply now and every time your opinions are questioned by scientific evidence.

I imagine that you are very busy with the hustle and bustle of electioneering right now, so I shall be content to wait a reasonable time for you to attend to a comprehensive answer.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org

X Rx

2010-05-03T06:05:00.000Z

X Rx

Jamie Deckoff-Jones MD
Santa Fe, NM
My daughter and I are culture positive for XMRV. We have started specific antiretroviral treatment. My intention is to share our journey with the medicine and science as it happens

YouTube - M.E. / Chronic Fatigue Syndrome - Sleepydust Video

2010-04-30T17:33:00.000Z

YouTube - M.E. / Chronic Fatigue Syndrome - Sleepydust Video

Please use this to spread understanding of our plight

WITCH HUNT OF DR SARAH MYHILL

2010-04-30T08:28:00.000Z

WITCH HUNT OF DR SARAH MYHILL

Please follow my example and sign/ donate (not obligitory) to support Dr Myhill

We the undersigned wish to register our strong objections to the GMC (General Medical Council) over the witch hunt campaign to discredit Dr Sarah Myhill. This is the 6th time that Dr Myhill has been subjected to such a hearing and enough is enough! This petition will be used to directly support Dr Myhill in her attempts to clear her name. (Please be civil and respectful in your contribution without making personal comments about any other individuals. Anything of this nature serves no useful purpose and will be deleted by the petition sponsor

BioMed Central | Full text | Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

2010-04-30T07:21:00.000Z

BioMed Central | Full text | Practice Nurses views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

This is the only positive ( if you can call it that) quote "More powerful still in developing their views was personal experience of the condition. This allowed practice nurses to identify with patients more easily, and to empathise with the symptoms they were describing:

'I suppose I differ in the way that I had a virus, a viral illness many years ago and it was so bad I could barely lift my head, and no-one knew the cause of it, all my blood pattern was normal, I just could not get up... I didn't know what was happening to me and I, I did feel, in the end, is this some form of depression? You know, is it medical? Is it mental? I just did not know. All I know is how I felt, absolutely dreadful. And it didn't matter what the cause for that was to me, it was how I was and that's all that matters, so, I do try to look at it that way.' (PN19)'

Her experience so closely mirrors mine that it is uncanny, except that following my virus, not knowing why I felt that everything requiered the effort it takes to wade through neck high thick mud, I made the mistake of saying to my doctor that I thought I was depressed - that was the start of a downward spiral from which I have never fully surfaced. The antidepressents he prescribed made me suicidal ( a known side effect ) leading to hospitalization for months...

cannot write anymore right now...

Strong stuff, Annette Whittemores Testimony for CFSAC Meeting May 10, 2010

2010-04-30T05:27:00.002Z

Facebook | Whittemore Peterson Institute: Annette Whittemores Testimony for CFSAC Meeting May 10, 2010

All interested should read the full testimony but I want to highlight this paragraph about our plight due to woeful neglect..

Whittemore Peterson Institute
Testimony of Annette Whittemore
CFSAS
April 25, 2010

" Seek congressionally mandated research dollars that more closely
match the number of individuals impacted by the disease and the
severity of the illness. Millions of Americans are ill with ME and yet
the NIH allocates a mere $1.00 to $4.00 per year per person. The loss
in economic dollars is conservatively estimated to be $9 billion per
year. With that kind of economic loss to our society, why isn’t this
disease funded at the level of hepatitis C which is currently at $93
million a year? Patients diagnosed with ME also suffer from
inflammatory bowel disease, cognitive impairment, fibromyalgia,
anemia, gall bladder disease, chronic Lyme disease, sleep disorders,
chronic pain, depression, hormonal dysregulation, frequent viral
infections, heart disease, and cancer. Yet these sick Americans are
forced to seek unproven medical treatments for symptomatic relief due
to the lack of scientific understanding of the underlying immune
deficiency that is driving this disease. "

Does a virus cause ME?

2010-04-25T04:45:00.000Z

Does a virus cause ME?

WPI response to Members of the DSM-5 Task Force

2010-04-25T04:32:00.000Z

http://wpinstitute.org/news/docs/DSM-5WPIaw2.pdf

The Whittemore Peterson Institute is deeply concerned that there will
be future complex biological diseases of unknown origin, which could
too easily be ignored as the result of the diagnosis of “complex
somatic disorders”. This would result in serious consequences for
those patients who continue to decline in health without appropriate
medical interventions.

The term CSSD may also serve as a diagnosis to be used by physicians
who currently lack the sophisticated diagnostic tools to describe a
new and emerging illness, causing serious harm to those who are ill.
Two such recent examples of diseases once categorized as somatic
illnesses are multiple sclerosis which was originally called,
“hysterical women’s disease” and gastrointestinal ulcers. Only after
these diseases were pursued by those who believed in their physical
causes with subsequent biological research, were medically effective
treatments made available. Thus creating a somatic diagnosis, when
there is in fact a physical illness, would relegate a population of
patients to many more years of suffering, while basic biological
research funding is denied.

For these reasons, the WPI requests that the APA thoughtfully examine
the purpose and possible unintended consequences for the encompassing
somatic category of illness, Complex Somatic Disorder, and
emphatically requests that the DSM-5 task force reject CSSD, as a
medical or psychiatric diagnosis.

5th Invest in ME International ME/CFS Conference 2010 « LIVING WITH ME

2010-04-25T03:36:00.000Z

5th Invest in ME International ME/CFS Conference 2010 « LIVING WITH ME

5th Invest in ME International ME/CFS Conference 2010

A New Era in ME/CFS Research

in Westminster, London, on 24th May 2010.
From the beginning Invest in ME have been attempting to show the international dimension to ME and how it requires international cooperation. Support such as this, coming from such respected and long standing organisations is something about which we feel very honoured.

The key to resolving, treating and curing ME/CFS lies in biomedical research.

However, apart from a knowledge of the biomedical research which is ongoing it is necessary for healthcare staff to be aware of the multiple symptoms exhibited by ME patients and of the possible treatments available.

The education of healthcare staff about ME/CFS now needs to break with the past and reflect the newfound knowledge about the pathogenesis of ME/CFS which high quality biomedical research is providing

This promises to be an interesting conference which will use as its theme the education of healthcare staff regarding ME/CFS.

Following the increased interest in biomedical research into ME brought about by the discovery of the XMRV retrovirus by the Whittemore-Peterson institute, the National Cancer Institute and the Cleveland Clinic it is important that healthcare staff as well as patients are acquainted with the current biomedical research and are aware of the consequences of ME.

http://www.investinme.org

Important letter re XMRV and possible treatment

2010-04-25T02:42:00.001Z

A message from Dr. Jamie Deckoff-Jones

I am a 56 year old physician with ME/CFS/atypical MS. I have a daughter with ME/CFS/Lyme Disease. I was an emergency physician. After I got sick, I recovered enough to have a private practice. I treated brain injury with neurofeedback and HBOT. In that context, I treated patients with Lyme/CFS/ASD/PTSD/mood disorders. I am also well versed in complementary, alternative, integrative, functional medicines and bioidentical hormone replacement.

When I read the paper in /Science/ about XMRV being highly associated with CFS, it was apparent to me as a physician and a patient that this was it. When I realized that the virus is sensitive in vitro to existing safe HIV drugs, I thought and still think that it is a miracle. In fact, I am stunned by the sudden overabundance of caution in the treating physicians. It would seem that nobody wants to try it. Despite being given the key. Never mind that we are a patient population that has been experimented on for decades.

Frankly, I didn’t see what I had to lose. We are culture positive at VIP Dx. We have tried everything to no avail. So with the assistance of a wise, compassionate friend who is an ID doc, and a smart family practitioner, I started AZT 300mg on March 4 and Isentress 400mg on March 11, both twice a day. It was my intention to wait for some sort of confirmatory data before reporting anything publicly. But watching all that isn’t happening with respect to figuring out how to help the patients, I don’t think that anything should depend on how a few patients do, especially a patient like me who may have been infected for as many as 40 years. I don’t think it is wise to wait while scientists argue about the validity of lab tests. There are too many who need help emergently. HAART is a safe existing protocol for AIDS which includes three drugs which inhibit XMRV in vitro. We even know that the three possible combinations of those drugs are each synergistic in vitro. But, the sickest will die while the scientists try to figure it out, so it seems to me that it is up to the doctors to treat with the information available. As always.

I believe that there is a rationale for treating the sickest patients now. Physicians are allowed to prescribe drugs off-label. I think they should be testing their patients, at VIP Dx, the only commercial lab right now that seems to be able to find XMRV in peripheral blood, using the methods validated in the /Science/ paper. *I would be happy to share with any physician willing to consider treating.

*I certainly don’t expect that it will be as easy as taking a few pills. There is lots of downstream damage that will need to be treated. But treating all of the problems that have been identified over the years in this patient population will likely be more effective for many more patients than it has been in the past. We will finally be able to identify the commonalities and differences in the various neuroimmune cohorts. *Always treat the causative agent if you can.* Then modify the host environment to the best of your ability so that whatever is left functions at its highest possible level.

In my opinion, too many of our physicians have gotten caught up in their own ideas and lost track of the goal, which is to get the patients well. As a group, doctors and patients alike, we must support a willingness for the truth to come out, whatever that is. New discoveries have to be incorporated into our thinking as they occur.

I thought that it would be OK to sit back and let the dust settle. Whenever momentous discovery happens in medicine, there is a flurry of resistance from those who have been made wrong. But this is uglier than that. Now the WPI is in need of funding. Connect the dots. And the band is playing on while we go down…

I am no activist. I am politically naive. But I know the power of the internet. I know how marginalized we have been as patients. The people at the WPI are our friends. They are fighting for us, when no one has. As a community, we are often too sick to fight. So we have to let others slay the dragons for us. We have to support them in any way we can. Read: *SEND AS MUCH MONEY TO THE WPI AS YOU CAN AFFORD*. Please tell everyone you know. Pull out all the stops.

Sincerely,
Jamie Deckoff-Jones MD
Santa Fe, NM

[Please disseminate.]

Scoop6 Races April 24th

2010-04-24T10:00:00.000Z

Scoop6 Race 1 2.00 Sandown
Scoop6 Race 2 2.15 Ripon
Scoop6 Race 3 2.30 Sandown
Scoop6 Race 4 3.05 Sandown
Scoop6 Race 5 3.25 Ripon
Scoop6 Race 6 3.40 Sandown

Should I go on strike?

2010-04-22T08:36:00.001Z

A Fibromyalgia Doctor's Advice for Dealing with the Physical Tasks of Daily Life
by Dr. Mark J Pellegrino, MD*
April 21, 2010

A Fibromyalgia Doctors Advice for Dealing with the Physical Tasks of Daily Life

A specialist in musculoskeletal function and pain (Physiatry), fibromyalgia doctor Mark Pellegrino suggests many “basics” that can help those with FM and other painful conditions to approach daily chores in ways that are kinder to the muscles. An FM patient himself, he knows that ‘every little bit helps.'

_______________

Whoever invented fibromyalgia never had to vacuum!

Chores can be a difficult challenge for someone with fibromyalgia. I always ask my patients if their fibromyalgia interferes with activities in the house and they almost always tell me “yes” (even the men!). The bending, reaching, lifting, and pulling required of these tasks causes increased pain and often leads to painful flare-ups. The fibromyalgia homemaker/maintainer is faced with the dilemma of wanting to have a clean home, but not having the physical abilities to complete these tasks without pain. What can you do?

1. Stop doing housework altogether. Yes, just go on strike! See if the work gets done by others. Watch as nothing gets done and your house becomes a health hazard! You can’t stop everything, but daily or weekly tasks can be analyzed to determine if they can be done less frequently. Consider a rotating system where different parts of the house are cleaned on different days and not all at once. Instead of doing one heavy task in one day, spread it out into several mini-tasks over the course of a week.

Your whole house may not be perfectly clean all the time, but parts of your house are perfect every day!

2. Have someone else do it, with you supervising. This is a good way to teach responsibility to your children (or your spouse, the biggest kid of all). The shared housework concept divides the responsibilities among the entire family, and you do the share of tasks that you can comfortably handle.

The heavier tasks (vacuuming, carrying laundry loads) should be delegated to other family members. You supervise - and be sure to look busy at all times!

3. Pay someone else to do it, if you can afford it. Try to have the paid person come weekly or every other week to do the major cleaning, scrubbing and vacuuming. You can do the minor “touch-up” work in between visits. Bribe your kids to work cheap!

4. Modify the way you are doing particular tasks. This allows you to continue doing the homemaking, but do it in a way that is kinder to your muscles. Since homemaking chores are done with your body in unusual and awkward positions that aggravate your fibromyalgia, proper attention must be paid to "fibronomics."

Four Rules of Fibronomics

1. Arms stay home.
2. Unload the back.
3. Support always welcome.
4. Be naturally shifty.

Time for change

2010-04-18T09:47:00.000Z

I am going to heed my doctors parting words when I saw her this week, she advised me to rest more and play more....

A Sudden Illness - How My Life Changed, by Laura Hillenbrand

2010-04-16T18:08:00.000Z

A Sudden Illness - How My Life Changed, by Laura Hillenbrand "I returned home, lay down, and tried to figure out what to do. My psychiatrist had found me to be mentally healthy, but my physicians had concluded that if my symptoms and the results of a few conventional tests didn't fit a disease they knew of, my problem had to be psychological. Rather than admit that they didn't know what I had, they made a diagnosis they weren't qualified to make."

I hope recent advances (XMRV & the Canadian SM neurological classification) make this attitude an historical abberration rather thhan the norm as it is now.

ME/CFS Given Official Recognition by Ontario Government

2010-04-16T16:28:00.000Z

Amazing news!!!!!!

ME/CFS Given Official Recognition by Ontario Government

ME/CFS Given Official Recognition

ME/CFS Given Official Recognition by Ontario Government!

This means that no one in Ontario who suffers from ME/CFS can ever again be told by a doctor that ME/CFS does not exist. If they do, tell them to look up Diagnostic Code 795. 'Chronic Fatigue Syndrome' has been given the

OHIP Diagnostic Code 795 by the Ontario Medical Association as a Neurological Illness!

Ideally, we wanted the Diagnostic Code to read: 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, but we had to take what the Ontario Medical Association approved. The most important fact is that 'Chronic Fatigue Syndrome' is now officially recognized as a Neurological Illness in the Province of Ontario, Canada. Perhaps the other Provincial Ministries of Health in Canada will follow?

It has taken many years to get to this point of lobbying, meetings, etc. With the publication of the Canadian Definition, which was initiated by the National ME/FM Action Network, this made this possible. Over the last several years, The Myalgic Encephalomyelitis Association of Ontario has been in meetings with the Ontario Ministry of Health to lobby for a Diagnostic Code and we are so pleased that we now finally have one. Dr. Alison Bested did a fantastic presentation to the Ontario Medical Association. What does it mean to have a (CFS) code"? It means that:

1. NO physician can ever say again that our illness does not exist;

2. All physicians in Ontario will receive a notice from OHIP of our new CFS Diagnostic Code 795 as a Neurological Ilness;

3. The fact that the Ontario Medical Association gave CFS a Diagnostic Code as a Neurological Illness will cause concern to Insurance companies;

4. It will help individuals applying for Ontario Disability Support Program and the Canada Pension Disability Plan;

5. It now makes it possible to collect Statistics in Ontario; and

6. It will hopefully give incentive to the other provinces to follow.

NOTE: The CFS Diagnostic Code is given to someone who is being diagnosed with CFS for the first time. The code is not a time-based fee code. Follow up appointments for any illness (heart disease, MS, CFS, etc. at the present time is usually billed as Supportive Therapy if you take more time than a normal appointment.

Whittemore Peterson Institute – Throwing Down The Gauntlet | CFS Un-Tied Blog

2010-04-13T06:40:00.000Z

Whittemore Peterson Institute – Throwing Down The Gauntlet | CFS Un-Tied Blog

"Whittemore Peterson Institute – Throwing Down The Gauntlet
The rumor mill surrounding the XMRV pseudo-replication studies can finally be put to rest. Any further speculation regarding the cohort used in the original studies, the methodology used in replication attempts, and the efforts made by the WPI to supply reagents and positive patient samples (which went unused) is pointless. The line in the sand has been drawn.

Once again, we need to support the science. Please take a moment and make whatever donation you can to the WPI Institute. "

I truly hope this gets the required response and the XMRV debate moves forward

Mitochondrial Function Profile - DoctorMyhill

2010-03-17T21:50:00.000Z

A Doctor's Roadmap for Dealing with the Problems of ME/CFS
by Dr. Sarah Myhill, ME*
March 17, 2010

The seeming triggers and comorbidities of ME/CFS differ from person to person. But until science finds a “silver bullet,” experienced clinicians know that better health depends on following some fundamental rules.

Dr. Sarah Myhill, MD, a UK-based fatigue specialist focused on nutrition and preventive medicine,* lays out these rules, plus a list of interventions and tests that often help with specific symptoms. This information is excerpted with kind permission from an article posted in the “Fatigue” section of Dr. Myhill’s newly redesigned educational website (DrMyhill.co.uk)

Mitochondrial Function Profile - DoctorMyhill

bmj.com Rapid Responses for Santhouse et al., 340 (feb11_1) 738

2010-02-17T10:40:00.000Z

bmj.com Rapid Responses for Santhouse et al., 340 (feb11_1) 738

Chronic Fatigue Syndrome 15 February 2010

John K Johnson,
Consultant Biochemist
Retired

"The air of defeatism that exists within the medical profession about these
conditions is understandable as there is no known cause, no diagnostic test,
and no satisfactory treatment. There is little dedicated specialist
provision or even recognition of which hospital department should deal with
referrals. No NICE guideline exists for fibromyalgia and there have been few
articles in the BMJ or BMA Learning over the past ten years so research must
be limited. On the other hand, claims for treatment leading to miracle cures
can be found on the internet and in alternative medicine catalogues, all
unsubstantiated by clinical trials.

Perhaps the National Institute for Health and Clinical Excellence can be
persuaded to review this situation and initiate research to show sufferers
that they are not forgotten."

Chronic Fatigue Syndrome (ME/CFS) News From Phoenix Rising - A Look Back at Dr. Reeves CDC

2010-02-01T06:49:00.000Z

Chronic Fatigue Syndrome (ME/CFS) News From Phoenix Rising - A Look Back at Dr. Reeves CDC

My update

2010-01-25T08:35:00.002Z

Just when I think I have come to grips with living with CFS/ fibromyalgia it throws another flanker at me...around Christmas I thought I ad an eye infection but the antibiotic cream soothed a little but did not get rid of the stabbing itchy red eyes, gummy on the morning so back to my own GP who has prescribed fake tears... only a minor thing I know but it makes me feel and look grotty with permanent red glazed eyes.. add on waking with a visual migraine and it adds up to a downer start to the week. I had planned to try little decorating today, in 15 or 20 minute stints but migraleve will have to work miracles before that is possible...aaarrrgghhhhh

January 2010 : ME Free For All

2010-01-16T07:44:00.000Z

January 2010 : ME Free For All: "Is M.E. a genuine illness? poll in 'British experts say ME virus is a myth', Daily Mail, 6 January 2010 #10
Sir,

Invest in ME is a UK charity which seeks to educate about Myalgic Encephalomyelitis (ME/CFS).

You have allowed a poll entitled, 'Do you think ME is a genuine illness?' to be set up on your web site at
www.dailymail.co.uk/debate/polls/poll.html
which itself seems to have been initiated following the recent Imperial College research publication concerning the XMRV retrovirus (British experts say ME virus is a myth, Daily Mail, 6 January 2010).

This is a highly offensive action taken by your staff and does you no credit whatsoever. We would like to request that you remove this poll immediately.

There is no reason or sensible motive, apart from sensationalism, to promote such a poll. ME is recognised as a neurological illness by the World Health Organisation and by the UK government. Presumably you would not run such a poll for other illnesses such as cancer, diabetes, MS or Parkinson's?

Should you need to know the real situation with myalgic encephalomyelitis (ME) which exists then you are welcome to contact us. There are so many real issues surrounding the perception of ME by the media and promoted by vested interests in the establishment that it would be better if you were to concentrate on those.

The treatment of ME patients in the UK is a national scandal and your newspaper and its web component would perform a real public service, and perhaps attract more readers, if it exposed the people who seek to perpetuate the myth of ME as a somatoform illness.

Regarding the ICL research this has already been discredited by the Whittemore-Peterson Institute of Nevada (WPI), USA, who carried out the o"

January 2010 : ME Free For All

2010-01-16T07:42:00.001Z

January 2010 : ME Free For All: "As an M.E. sufferer of over three years, I wish to protest most strongly at your promotion of a poll questioning the legitimacy of my illness (Is M.E. real?).

www.dailymail.co.uk/debate/polls/poll.html

M.E. has been listed as a neurological disease by the World Health Organisation since 1969 and, as my diagnosis came from my GP, one would assume she knew what she was talking about and would not diagnose anybody with something that did not exist.

A year ago I lost my disability benefits solely because of the bias and misinformation held as `truths' by some doctors who work for the DWP - this was despite having physical tests results showing massive cell damage going on inside my body and providing irrefutable evidence of the physiological nature of my disease which is responsible for the overwhelming pain and fatigue from which I suffer."

"I have had CFS/ME for more than 14 years. It has destroyed everything - careers, relationships and taken me to the very edge of sanity.

I live a life of isolation, pain and exhaustion. Normal activities are off limits to me.

I have excrutiating pain under all of my skin like barbed wire.

Such has been its ferocity this year that I have seriously contemplated suicide.

That you should visit such a mischief-making poll
www.dailymail.co.uk/debate/polls/poll.html
on people like myself is all the evidence that I need that our society is in trouble.

Your newspaper's disregard for the suffering of others is typical of the tabloid obsession with cheap thrills no matter what the cost.

Walk a mile in my shoes. Quite frankly you couldn't.

Yours faithfully
Adrian Bonds"

Daily Mail explain why they pulled their poll on whether ME is a genuine illness

2010-01-16T07:38:00.000Z

Daily Mail explain why they pulled their poll on whether ME is a genuine illness: "The Daily Mail have apologised for their controversial website poll 'Do you think ME is a genuine illness?'. The poll – originally put up to accompany the paper's coverage of the XMRV debate – was pulled from the website after a huge outcry from many people with ME/CFS and a sustained email campaign from several Facebook pages.
In an email signed by assistant editor Charles Garside, the Daily Mail wrote:
'First of all, let me apologise sincerely for any offence that may have been caused.

'The poll to which you refer was posted by a junior member of staff of Mail Online in response to a story which questioned once again the causes of ME.

'As I am sure you are aware, there is still a great deal to learn about what lies behind the condition. However, I entirely accept that this is completely different from suggesting that the condition itself is not real, regardless of the cause.

'I am pleased to report that once the clumsy nature of the poll was drawn to more senior staff's attention it was immediately removed from the website.

'The Mail - both the paper and online - prides itself on its coverage of medical matters and has devoted much resource over the years into covering the search of the causes and a cure for ME. Rest assured that we will continue to do this and that its sufferers continue to enjoy our full sympathy and support.

'We do appreciate all feedback - whether positive or negative - and I am particularly grateful to you for taking the time and trouble to draw this to our attention.'"

Thursday update

2010-01-15T06:51:00.001Z

Made home made pizza and am suffering

Feeling fluey

2010-01-14T09:32:00.003Z

Yet gain I failed miserably to get two quality rests yesterday, in fact I didnt even manage one - what is blocking me?

As a result I was too tired to cook dinner so we both just had a tin of soup, usually try to avoid anything ready made but it was desperate. It was t'other halfs night to dad sit ( dad has severe dementia and P goes round two nights a week to supplement the carers services and try to proovide some quality time for him). I ust about managed to watch Emmerdale but was flat out on the settee when P got home about 8.30. Only woke a few times during the night ( thanks to Nortryptaline) but am still eye-crossingly tired this morning with hot flu like head...guess I really must get those rests in....

CFS & Fibromyalgia Rating Scale | CFIDS & Fibromyalgia Self-Help

2010-01-13T09:54:00.000Z

CFS & Fibromyalgia Rating Scale | CFIDS & Fibromyalgia Self-Help: &

CFS & Fibromyalgia Rating Scale
100 Fully recovered. Normal activity level with no symptoms.
90 Normal activity level with mild symptoms at times.
80 Near normal activity level with some symptoms.
70 Able to work full time but with difficulty. Mostly mild symptoms.
60 Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
50 Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.
40 Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
30 Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
10 Mostly bedridden. Severe symptoms.
0 Bedridden constantly. Unable to care for self.

Finding Your Energy Envelope, Part 1 | CFIDS & Fibromyalgia Self-Help

2010-01-13T09:41:00.001Z

Finding Your Energy Envelope, Part 1 | CFIDS & Fibromyalgia Self-Help: "Finding Your Limits: A Quick Answer
If you would like a general idea of your limits, rate yourself on the CFS & Fibromyalgia Rating Scale. Most of the students in our course have rated themselves between 25 and 45 at the start of the course, but we have had people across almost the full range of the scale.

Doh, should have done this first...I come out as;

20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day

Managing Your Energy Envelope | CFIDS & Fibromyalgia Self-Help

2010-01-13T09:40:00.000Z

Managing Your Energy Envelope | CFIDS & Fibromyalgia Self-Help: "Managing Your Energy Envelope"

Feeling a little less tired today despite my attempts to rest and "manage my energy" being foiled by the builders making a huge racket. Flu like feeling and dry, scratchy red eyes much improved today. So will try using the Wii again but otherwise a quiet day planned..

New pacing regime for fibromyalgia

2010-01-12T09:43:00.002Z

Not a great start, I fully intended to have a rest yesterday early afternoon but the the Wii fit & sports arrived so I just had to set it up nd then set up my profile and did the first assesment which reckoned I am two years older in Wii age than my real age..then I had to organise an online Asda shop and that was any chance of a rest out the window.

The result today?? Slept past the alarm which is usually a sign of a bad day to comme. I have full on brain fog, am eye-crossingly tired and every time I move my head I get lightening pains frm my crunchy neck up into my head.

So, off for 100% rest right now to see if that helps....

New Year new approach to pacing myself

2010-01-11T07:33:00.002Z

I hope to avoid the cycle of feel good one day, do too much and crash for the rest of the week that I have been prone to.

I aim to follow the "manage your energy envelope" advice and get at least two proper rests a day which involves proper rest ie doing nothing, no TV, radio or reading for at least 15 minutes.

There is a Wii on its way so I hope to be able to also get back some muscle tone, I have tried walking, going to the gym etc but all have worsened my fbromyalgia symptoms, just getting to the gym with a kt bag proved too much!

I really also want to be less of a hermit but social activity is just so draining that that may take longer to achieve.

Updates to follow..

diagnosis of fibromyalgia

2010-01-11T07:32:00.001Z

Still in the dark ages I guess...

http://www.ncbi.nlm.nih.gov/pubmed/19962492?dopt=AbstractPlus

Diagnosis and differential diagnosis of fibromyalgia.
Goldenberg DL.

Department of Rheumatology, Newton-Wellesley Hospital, Newton, Massachusetts 02462, USA. dgoldenb@massmed.org

Fibromyalgia is a chronic functional illness that presents with widespread musculoskeletal pain as well as a constellation of symptoms including fatigue, cognitive dysfunction, sleep difficulties, stiffness, anxiety, and depressed mood. The diagnosis of fibromyalgia, similar to other functional disorders, requires that organic diseases are not causing the symptoms. Systemic and rheumatic diseases can be ruled out by a patient history, physical examination, and laboratory investigations. Because there are no specific laboratory tests for fibromyalgia, the 1990 American College of Rheumatology (ACR) classification criteria have been used in clinical settings; however, they are not ideal for individual patient diagnosis. Clinicians should be aware of limitations inherent in using tender points in the diagnosis of fibromyalgia. The multiple symptoms of fibromyalgia often overlap with those of related disorders and may further complicate the diagnosis. One of the most challenging diagnostic dilemmas that clinicians face is distinguishing fibromyalgia from other central pain disorders (e.g., irritable bowel syndrome, chronic fatigue syndrome, migraine). Screening questions based on published criteria can be used as a first approach in diagnosing functional illnesses. Numerous studies report a higher prevalence of psychiatric disorders in patients with fibromyalgia. Therefore, a careful history and evaluation should be taken for the presence of primary mood disturbances. To date, there is no "gold standard" for diagnosing fibromyalgia. Until a better clinical case definition of fibromyalgia exists, all diagnostic criteria should be interpreted with caution, considered rudimentary, and subject to modification. (c) 2009 Elsevier Inc.

PMID: 19962492 [PubMed - in process]

Official Statement from the Whittemore Peterson Institute Regarding UK Study

2010-01-07T07:00:00.001Z

Official Statement from the Whittemore Peterson Institute Regarding UK Study

http://www.wpinstitute.org/news/docs/WPI_Erlwein_010610.pdf

The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the
Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the
rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland
Clinic, therefore it cannot be considered a replication study nor can the results claim to be
anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.

The scientific methods used by WPI are very exact and require specific techniques to ensure
accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences
include, but are not limited to the following:

1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell
culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which
were not validated by a clinical control.

The WPI study was published after six months of rigorous review and three independent lab
confirmations, proving that contamination had not taken place and that infectious XMRV was
present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria.
In contrast, this latest study was published online after only three days of review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.

XMRV research update

2010-01-06T08:31:00.000Z

010603: "The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is conducting a rigorous study to detect XMRV. Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients. We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur.

Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide. Once XMRV detection methods are optimized and made widely available, we encourage this group of researchers to take another look at XMRV as a possible explanation for the organic basis of CFS in the U.K."

Response to the piece on NHS services for ME patients (The Argus, December 14

2010-01-02T08:36:00.000Z

"Further to the piece on NHS services for ME patients (The Argus, December 14), in Sussex there are more than 6,000 adults and children affected by myalgic encephalopathy/ chronic fatigue syndrome, many of whom are virtually housebound.
ME is classified by the World Health Organisation as a neurological disorder and the National Institute for Health and Clinical Excellence has recently issued guidelines to the medical profession.
Most doctors these days recognise ME as a serious illness and do their best to treat and support patients.
However, the Primary Care Trusts of Sussex need to urgently provide funding to shore up and further develop the NHS Sussex-wide specialist service we help set up in 2005 and has dealt with more than 2,000 referrals. We can be reached on 01273 674828.
David Butler
trustee
Sussex ME/CFS Society
Robin Dene, Brighton"

ME treatment needs to improve

2010-01-02T08:35:00.000Z

I should say so having had my last 20 years blighted by this illness with no proper diagnosis or integrated treatment whatsoever.

"By Siobhan Ryan »

It was once dismissed as nothing more than “yuppie flu” but over the years a greater understanding about the debilitating effects of ME has emerged.
The lives of many patients were left devastated by the disease as they struggled to cope with a whole range of symptoms ranging from extreme tiredness and lethargy to consistent pain and dizziness.
This was all up against a lack of knowledge and recognition from the medical profession and the general assumption that people should just “pull themselves together”.
But things have now changed significantly for the better.
ME is now recognised as a specific medical condition and NHS services specifically aimed at supporting and treating patients are now emerging across the country.
But according to the All-Party Parliamentary Group (APPG), chaired by Brighton Kemptown MP Des Turner, there is still plenty that needs to be done.
The group has recently published an interim report on its inquiry into the NHS services available.
Dr Turner said: “Currently, services offered to patients with ME or chronic fatigue syndrome (CFS) are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard.
“This is confounded by delays in diagnosis and failings on the part of GPs to recognise the disease or diagnose it.
“We found unacceptable variation in provision between different health trusts, which needs to be addressed.”"

Current concerns

2009-11-25T09:55:00.003Z

For the first time since my entire digestive tract was inflamed top to bottom my weight has dropped to under 9 stone (around 57kg) despite my gastric symptoms being ok for me...

( IBS plays up now and then with pain and diarrhea alternting with rabbit dropping constipation, but not hing like it was before I cut out dairy - vomiting every day or food passing through in just a few hours...)

I do have a chronic cough and frequent sweats plus the usual overwhelming fatigue, migraines etc etc so off for a chest x-ray first then god knows what the GP will do next..ho hum

C.F.S. Q&A

2009-11-25T09:55:00.000Z

Worth a read...

Times Delivers E-Mail - Sign Up:

"When Chronic Fatigue Syndrome Goes Undiagnosed
Q.Dr. Klimas,
Do you have any thoughts as to how many C.F.S. patients are under the radar because they were not eager to sign up for a “wastebasket” diagnosis, or otherwise frustrated out of the medical system early on?
There are many other labels that would be easier to deal with: chronic Lyme, depression, etc. What are the ramifications of an actual clinical diagnostic test for C.F.S. on the medical and patient communities? Can you foresee any possible unintended consequences?

Skeptic
A.Dr. Klimas responds:
Currently only 16 percent to 17 percent of the people with chronic fatigue syndrome whose symptoms are severe enough to meet the case definition for the illness have been diagnosed. Whether this is coming from the patient, as you suggest, or a medical community that does not know how or is reluctant to make the diagnosis is less clear."

More evidence of inflammation in (ME)CFS

2009-11-16T09:42:00.001Z

Margaret Williams 14th November 2009

http://www.meactionuk.org.uk/More-evidence-of-inflammation-in-

In his presentation in Bergen on 20th November 2009, Professor Peter White's
power point slides state about (ME)CFS that maintaining factors include
illness beliefs, the search for legitimacy, being on benefits, and the
diagnostic label, and that immune or viral measures are NOT involved in the
maintenance of the disorder

( http://www.unifobhelse.no/upload/Bergen%20What%20is%20CFS%202009.pdf ).

White's assertion that immune or viral measures are not involved in the
maintenance of the disorder would seem to be a direct denial of the evidence
of two of the world's leading immunologists who specialise in ME/CFS,
Professors Mary Ann Fletcher and Nancy Klimas, who recently published yet
more confirmatory evidence of immune dysfunction in the maintenance of the
disorder (Journal of Translational Medicine 2009:7:96:
doi:10.1186/1479-5876-7-96). Their peer reviewed article was published
immediately upon acceptance.

Fletcher and Klimas et al are clear that cytokine abnormalities are common
in (ME)CFS and that the cytokine changes observed are more likely to be
indicative of immune activation and inflammation, rather than specific for
(ME)CFS, as people with fibromyalgia, Gulf War Illness, rheumatological
disorders and multiple sclerosis may also have similar cytokine patterns.
...."The elevations in LTa, IL-1a, IL1b and IL-6 indicate inflammation, likely
to be accompanied by autoantibody production, inappropriate fatigue, myalgia
and arthralgia, as well as changes in mood and sleep patterns.

"This study is among the first in the (ME)CFS literature to report the
plasma profiles of a reasonably large panel of cytokines assessed
simultaneously by multiplex technique.

"Cytokine abnormalities appear to be common in (ME)CFS. The changes from the
normal position indicate immune activation and inflammation.

"The results imply a disorganised regulatory pattern of TH1 function,
critical to antiviral defence.

"The results from this study support a TH2 shift, pro-inflammatory cytokine
up-regulation and down-regulation of important mediators of cytotoxic cell
function".

Since it is now unequivocal that people with (ME)CFS show markers of
inflammation, what will be the impact on the Wessely School's MRC PACE Trial
that is predicated on the assumptions of deconditioning, on the "perception"
of effort and on aberrant illness beliefs and whose participants are
instructed about "sleep hygiene"?

Chronic fatigue syndrome: neurological, psychological or both?

2009-11-15T07:17:00.000Z

Chronic fatigue syndrome: neurological, psychological or both?

Peter White, Professor of Psychological Medicine, Barts and the London Medical School

A long read but well worth it

THE BRITISH NEUROPSYCHIATRY ASSOCIATION

http://www.bnpa.org.uk

http://bnpa.org.uk/doc/HANDBOOK.pdf

Neurology and Psychiatry SpRs Teaching Weekend

12 to 14 December 2008 St Anne's College - Oxford

THE ESSENTIALS OF NEUROPSYCHIATRY

Presentations:

[...]

09:50 Chronic fatigue syndrome: neurological, psychological or both?

Peter White, Professor of Psychological Medicine, Barts and the London
Medical School

The extract I am appending is a summary of Professor Peter Denton White's
presentation (Page 46 of PDF) in which he talks about the taxonomy of CFS
"being a mess".

During his Royal Society of Medicine "CFS" Conference presentation, in
April 2008, White had said, ominously:

"...So ICD-10 is not helpful and I would not suggest, as clinicians, you
use ICD-10 criteria. They really need sorting out; and they will be in due
course, God willing."

See unofficial transcript of part of White's RSM presentation, here, in
which he presents his thoughts on current ICD taxonomy:

Prof Peter White discouraging RSM Conference from using ICD-10:

http://tinyurl.com/PDW-RSM-ICD-10

In an April 2009 paper, co-authored by White, the authors propose a change
to current ICD-10 codings:

http://www.ncbi.nlm.nih.gov/pubmed/19366500

Psychological Medicine Preprint "Risk markers for both chronic fatigue and
irritable bowel syndromes: a prospective case-control study of primary
care"

In the section "Implications for Further Research" the authors state that
because the paper finds that:

"These data also suggest that fatigue syndromes are heterogeneous
(Vollmer-Conna et al. 2006), and that CFS/ME and PVFS should be considered
as separate conditions, with CFS/ME having more in common with IBS than
PVFS does (Aggarwal et al. 2006). This requires revision of the ICD-10
taxonomy, which classifies PVFS with ME (WHO, 1992)"

----------------

http://bnpa.org.uk/doc/HANDBOOK.pdf

Extract: presentation given at Neurology and Psychiatry SpRs Teaching
Weekend

Chronic fatigue syndrome: neurological, psychological or both?

Peter White, Professor of Psychological Medicine, Barts and the London
Medical School

Epidemiology of fatigue and CFS

Fatigue is a common symptom in both the community and primary care. When
asked, between 10 and 20 per cent of people in the community will report
feeling abnormally tired at any one time.

At the same time, fatigue is continuously distributed within the community,
with no point of rarity.

Therefore any cut-off is arbitrary and the prevalence will vary by how the
question is asked, the symptom volunteered, and its context. Between 1.5 %
and 6.5 % of European patients will consult their general practitioner with
a primary complaint of fatigue every year, the incidence varying by age and
population. Fatigue is more commonly reported and presented to general
practitioners by women and the middle-aged, and is most closely associated
with mood disorders and reported stress. It does not seem to vary by
ethnicity in the UK, but there is an intriguing paradox in that it is
reported more commonly by those in high income countries, yet is presented
to medical care more often in low income countries.

Prolonged or chronic fatigue is significantly less common than the symptom
of fatigue and it is only in the last 10 years that consensus has emerged
about the existence of a chronic fatigue syndrome (CFS), also called
myalgic encephalomyelitis (ME). CFS is now accepted as a valid diagnosis by
medical authorities in the UK, in the United States of America, as well as
internationally. About one third of patients presenting to their doctor
with six months of fatigue will meet criteria for a chronic fatigue
syndrome. The other two thirds have fatigue secondary to another condition,
most commonly mood and primary sleep disorders. Its primary symptom is
fatigue, both physical and mental, which particularly follows exertion.
Other symptoms agreed in consensual guidelines include poor concentration
and memory, sleep disturbance, headache, sore throat, tender lymph glands,
muscle and joint pain.

There are several criterion based definitions of CFS. These definitions
were derived by consensus and have not been supported by empirical studies,
and continue to be refined. Their utility stems from providing reliable
criteria for research studies, rather than clinical use. The prevalence of
CFS is between 2.5 % and 0.4 % depending on the definition used and whether
comorbid mood disorders are excluded (that is mood disorders that are not
thought to be the primary diagnoses). It is most common in women, the
middle-aged, and ethnic minorities (unlike fatigue) - at least in English
speaking countries.

The diagnosis and classification of CFS

The clinical taxonomy for CFS is a mess. The ICD-10 classification defines
CFS within both the neurology chapter and mental health chapters. Myalgic
encephalomyelitis, the alternative name for CFS, is classified as a
neurological disease (G93.3) (a.k.a. post-viral CFS), whereas neurasthenia
(a.k.a. CFS not otherwise specified) is classified within mental health
(F48).

[Ed: Note that White does not mention, here, that Chronic fatigue syndrome
is listed in ICD-10: Volume 3, The Alphabetical Index* at G93.3, the same
coding as for Benign myalgic encephalomyelitis, and for Postviral fatigue
syndrome (ICD-10: Volume 1: The Tabular List).]

comments on meeting of the Chronic Fatigue Syndrome Advisory Committee

2009-11-13T20:09:00.000Z

One patient wrote to me recently describing her immense relief: she had been afraid she would die without ever finding out what was wrong with her.

I imagine many thousands—maybe hundreds of thousands of others—who fell ill in the epidemic years of the 1980s, felt the same. I know I did. The question was never whether we were ill with one of the worst diseases imaginable—it was whether we could ever learn the answer to the great mystery, the actual cause, the pathogen, before we dropped dead of it. And now it has been clarified: twenty-five years of retroviral infection, untreated, ignored, laughed at, allowed to wreak havoc, allowed to spread until penetration in the general population may have reached four percent—give or take.

http://oslersweb.com/blog.htm?post=646449

XMRV TESTING VIP Dx

2009-11-13T09:05:00.000Z

VIP Dx: "LATEST NEWS: XMRV TESTING

Dr. Vincent Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of “Science”, is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV. To read this landmark publication, 'Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome', please go to (www.sciencemag.org). We are pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease).
TO ORDER XAND TEST KITS, CONTACT VIP Dx.
To learn more about our XMRV tests, CLICK HERE."

EXERCISE THERAPY/PSYCHOTHERAPY HARMFUL INEFFECTIVE,

2009-11-13T07:10:00.001Z

http://www.ediver.be/ediver/latest%20news/PRESS%20RELEASE%20CBT%20and%20GET%
20in%20ME%20CFS.pdf

PRESS RELEASE
EXERCISE THERAPY/PSYCHOTHERAPY NOT ONLY INEFFECTIVE,
BUT ALSO POTENTIALLY HARMFUL FOR MANY PATIENTS WITH ME/CFS

A recent review of the relevant scientific literature shows that the
"revalidation therapies" for patients with ME/CFS, which are monopolized by
the governmental institutions for example in the UK, Belgium and the
Netherlands, are not only not efficient, but also aggravate the condition of
many patients.

Antwerp (Belgium); Limmen (the Netherlands), October 27th, 2009.

ME/CFS is a debilitating disease, affecting many biological systems.
According to the CDC, the level of impairment of ME/CFS patients is often
comparable to that of patients with some well-known, very severe medical
conditions, such as MS, AIDS, end-stage renal failure, and chronic
obstructive
pulmonary disease.

There is now sufficient evidence that ME/CFS is a disorder that
primarily involves an inflammation with dysregulated and suppressed
immune functions, oxidative stress, infections, autoimmunity and
mitochondrial dysfunction. During the last few years, many scientific
studies,
including gene expression research, have confirmed that patients with
ME/CFS suffer from the above organic disorders.

Despite several major scientific breakthroughs, ME/CFS is still
described in the popular media as a medically unexplained disorder.
Psychotherapy (cognitive behavioral therapy) and graded exercise therapy
(GET) are declared to be the only possible therapies.

A thorough analysis of the current medical scientific literature and
international patient surveys, however, shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also potentially
very
harmful. Scientific studies and large-scaled patient surveys have shown that
treatments with CBT/GET seriously deteriorate the condition of many patients
with ME/CFS. The work capacity decreased as well!

The review also explains why GET and exercise do aggravate
characteristic complaints, like “fatigue”, pain, neurocognitive problems
(e.g.
concentration and memory). Pre-existing biological aberrations, e.g.
inflammation, oxidative stress, and dysfunctional ion channels, will be
amplified by a minor exertion, like walking or reading a book … and by
“rehabilitation therapies” like CBT/GET.

The reviewers urge policy makers to change their policies drastically,
by putting a stop to potentially harmful and ineffective "rehabilitation"
programs, and investing into medical research and therapies targeted at the
immune system, infections and other pathological aspects of this horrible
/wasting disease.

References:

Twisk FNM, Maes M. A review on Cognitive Behavorial Therapy (CBT) and
Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic
Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not
evidencebased,
but also potentially harmful for many patients with ME/CFS. Neuro
Endocrinol Lett. 2009 Aug 26;30(3):284-299.

Maes M, Twisk FNM. Chronic fatigue syndrome: la bête noire of the Belgian
health care system. Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.

Information:
Frank Twisk MBA BEd BEc
Stichting ME-de-patiënten / ME-de-patiënten Foundation
Zonnedauw 15
1906 HB Limmen
Nederland / the Netherlands
Tel. +31-(0)72-505 4775
frank.twisk@hetnet.nl
www.michaelmaes.com (here you can download the full text)

Thursday Free Horse Racing Tips Results

2009-10-30T07:27:00.001Z

Lingfield Jackpot Placepot tips - stop at a winner/profit *

1.10 La Gifted won 4/1, Ardent Prince
1.40 Lay Claim
2.10 Princess Taylor, Snoqualmie Girl
2.40 Apple Charlotte 3rd 9/4, Sarah Park
3.10 Beat The Bell
3.40 Penton Hook 2nd 2/1

Thank heavens for stop at a winner yet again.....

Marking up todays cards, tips will be on Gambling Housewife earlier than susual due to urgent appointment but that means I may not be able to proof SAW today...

CBT & GET in ME/CFS Harmful for Patients -Review

2009-10-29T08:09:00.002Z

CBT = cognitive behavioural therapy
GET = graded exercise therapy

Society of Integrated Sciences

Abstract

Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a debilitating disease which, despite numerous biological abnormalities has
remained highly controversial.

Notwithstanding the medical pathogenesis of ME/CFS, the (bio)psychosocial model is adopted by many governmental organizations and medical professionals to legitimize the combination of Cognitive Behavioral Therapy (CBT) and Graded
Exercise Therapy (GET) for ME/CFS.

Justified by this model CBT and GET aim at eliminating presumed psychogenic and socially induced maintaining factors and reversing deconditioning, respectively.

In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust.

CBT/ GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them
adversely, the majority of them even reporting substantial deterioration.

Moreover, this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients.

Exertion induces post-exertional malaise with a decreased physical performance/ aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, fatigue", and weakness, and a long lasting "recovery" time.

This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune
dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal axis.

We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies",such as CBT/GET.