Wednesday, December 08, 2010



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

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

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..." (

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:

Permission to repost

Wednesday, December 01, 2010

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

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

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'

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.

Sunday, November 28, 2010



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:

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

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

Friday, November 19, 2010

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

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."

Sunday, November 14, 2010

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

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.

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.


Wednesday, October 27, 2010

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

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.

Thursday, September 02, 2010

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

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

The ME Association ( 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

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

Saturday, August 28, 2010

PNAS Paper media blackout in UK???

"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: . 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!!!

Tuesday, August 24, 2010

Study Links Chronic Fatigue Syndrome to a Class of Virus -


Study Links Chronic Fatigue Syndrome to a Class of Virus -

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.

Tuesday, August 10, 2010

More Clues To Fibromyalgia Pain

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.

Friday, August 06, 2010

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

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.

Wednesday, August 04, 2010

Norwich centre for ME sufferers planned - Norfolk News - EDP24

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

Wednesday, July 07, 2010

More Evidence of the Organic Nature of Multiple Chemical Sensitivity

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."

Sunday, June 13, 2010

Rough days

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...

Thursday, June 10, 2010

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

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.”

Friday, June 04, 2010

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

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 (

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.

Tuesday, June 01, 2010

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

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

Monday, May 17, 2010

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

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:

A disgrace, pure and simple

Wednesday, May 05, 2010

Nick Clegg on ME research

"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
Dr John H Greensmith
ME Free For

Monday, May 03, 2010

X Rx

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

Friday, April 30, 2010

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

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

Please use this to spread understanding of our plight



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

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

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
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. "

Sunday, April 25, 2010

Does a virus cause ME?

Does a virus cause ME?

WPI response to Members of the DSM-5 Task Force

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

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.

Important letter re XMRV and possible treatment

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.

Jamie Deckoff-Jones MD
Santa Fe, NM

[Please disseminate.]

Thursday, April 22, 2010

Should I go on strike?

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.

Sunday, April 18, 2010

Time for change

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

Friday, April 16, 2010

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

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

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.

Tuesday, April 13, 2010

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

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

Wednesday, March 17, 2010

Mitochondrial Function Profile - DoctorMyhill

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 (

Mitochondrial Function Profile - DoctorMyhill

Wednesday, February 17, 2010 Rapid Responses for Santhouse et al., 340 (feb11_1) 738 Rapid Responses for Santhouse et al., 340 (feb11_1) 738

Chronic Fatigue Syndrome 15 February 2010

John K Johnson,
Consultant Biochemist

"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."

Monday, January 25, 2010

My update

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

Saturday, January 16, 2010

January 2010 : ME Free For All

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

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
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

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?).

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
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

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, January 14, 2010

Feeling fluey

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....

Wednesday, January 13, 2010

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

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

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

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..

Tuesday, January 12, 2010

New pacing regime for fibromyalgia

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....

Monday, January 11, 2010

New Year new approach to pacing myself

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

Still in the dark ages I guess...

Diagnosis and differential diagnosis of fibromyalgia.
Goldenberg DL.

Department of Rheumatology, Newton-Wellesley Hospital, Newton, Massachusetts 02462, USA.

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]

Thursday, January 07, 2010

Official Statement from the Whittemore Peterson Institute Regarding UK Study

Official Statement from the Whittemore Peterson Institute Regarding UK Study

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
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.

Wednesday, January 06, 2010

XMRV research update

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."

Saturday, January 02, 2010

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

"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
Sussex ME/CFS Society
Robin Dene, Brighton"

ME treatment needs to improve

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.”"