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

Our priority is reliable independent research | This is Bristol



Our priority is reliable independent research


.

Monday, January 30, 2012

Bristol Evening Post
Follow.


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

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

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

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

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

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

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

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

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

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 referendum The Government to apologise for its treatment of ME / CFS patients - e-petitions

Just search for UK Fibromyalgia Awareness Raising

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

European ME Alliance - Norway's Directorate of Health Apologises to ME Patients for Poor Treatment A 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.

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

Low Dose Naltrexone

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.

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 care Love Jennie 30th August 2011

Seven genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis

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

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

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

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

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