Thursday, October 29, 2009

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

CBT = cognitive behavioural therapy
GET = graded exercise therapy

Society of Integrated Sciences


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

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

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

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

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

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

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

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

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

Monday, October 26, 2009

Support the 500 Professionals of the IACFS/ME – Reeves Must Go


Support the 500 Professionals of the IACFS/ME – Reeves Must Go

On May 27th and May 28th, 2009, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) convened in Washington, D.C. Among their recommendations to the Secretary of Health and Human Services was a call for new and progressive leadership at the CDC’s ME/CFS research division.

We, the public, need to back the IACFS/ME and the CFSAC. Under Bill Reeves’ regime, funding has routinely decreased and increasingly broad definitions which have ceased to have any clinical meaning or research value have been implemented.

Under Reeves’ direction the CFS program is being slowly strangled.

A couple of weeks ago, Dr. Judy Mikovits, who is a retrovirus expert at the Whittemore Peterson Institute, released the results of a study which provided overwhelming evidence that xenotropic murine leukemia virus-related virus, or XMRV, could very well be the third human retrovirus.

Mikovits found that in a study of 101 CFS patients, 67% were found to have XMRV in their cells, but this is really not new news. In 1991 Dr. Elaine Defreitas found retroviral DNA in 80% of her study’s 30 CFS patients. The CDC “replicated” her study, did not follow her exact procedure, and ended the study prematurely while ostracizing Defreitas.

What does Reeves say about Mikovits recent discovery? Without doing any study or due diligence Reeves dismisses the findings by saying that they are “unexpected and surprising” and that it is “almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS.”

Deceit and incompetence have increasingly become the order of the day. The money that Bill Reeves has been receiving has been terribly mismanaged as he desperately strives to forestall the slow but inevitable pace of biomedical research.

Inappropriate management of funds prevents collaboration with biomedical experts, as well as collaboration with psychosocial experts who are not trying to build a career in psychosomatic medicine.

Bill Reeves must be held accountable.

Inaccurate stereotypes persist because Bill Reeves has not been accurately educating the public on the seriousness of this disease.

CFS is not a disease of “feeling a little tired,” no matter what you call it; this is a severe neuro-immune disease of among other things, debilitating exhaustion completely out of proportion to exertion. Patients may be too exhausted to even be able to chew their food, leave their beds and much less even work – and remain so year after year. Is that your neighbor’s experience of tired?

Perhaps you suffer from CFS, perhaps your patients do, or perhaps a loved one does; your best interests are not and have not been at the heart of the CDC’s program. What’s at the heart of the program is job security for Bill Reeves, his paycheck and collaboration with his pals – not finding ways to combat and track this horrible disease.

We need you now more than ever. Right now is the first real chance that we have had in nearly 30 years to fight Reeves in force; to fight for you, your loved ones, or your patients. Everyone from researchers to advocates are in agreement – Reeves must go. And we must make it happen. No one will do it for us.

Join members of the IACFS/ME at the CFSAC’s October 29-30th meeting in Washington, D.C. Do not let the hard work of other advocates and researchers over the years be for nothing. We need to show that we cannot be silenced and we will never give up.

If you cannot personally attend, find someone to attend in your place. Ask your parents, your children, your spouses or friends to attend in your place. Ask your elected officials to have aids attend.

The answer is always no if you don’t ask – we must make it happen – none of us can live with the alternative.

Reeves must go.

Sunday, October 25, 2009

CFS Public Health Research Program 5-year Strategic Plan | CDC Chronic Fatigue Syndrome

CFS Public Health Research Program 5-year Strategic Plan | CDC Chronic Fatigue Syndrome:

Heavy reading but could impact on the future treatment and well being of all with CFS

"Laboratory Studies
The integration of laboratory studies with specific CFS research protocols helps to clarify associations of behavioral and environmental risk factors (including infection) with clinical and psychosocial attributes of CFS, to identify subsets of the illness CFS, and to identify potential therapeutic targets.

Measure neuroendocrinologic, metabolic, immunologic, and infectious characteristics of CFS
Evaluate genetics, epigenetics, and gene expression
Identify potential diagnostic and therapeutic agents
Evaluate the potential association of human herpes virus 6 (HHV-6) and xenotropic murine leukemia virus-related virus (XMRV) with CFS using specimens from well-characterized patients and matched controls
Maintain a biorepository of clinical specimens collected during population and clinical studies for in-house and collaborative molecular analyses
Develop a funding opportunity announcement to explore the application of novel pathogen discovery approaches to existing, well-characterized clinical specimens...

Clinical Intervention Studies
Clinical behavioral intervention studies will be conducted in collaboration with Emory University School of Medicine, Bibb County Medical Society, Mercer School of Medicine, Mayo Clinic, and UK National Health Service. Anticipated protocol development will begin in late 2010-2011, with studies continuing through 2013.

Evaluate cognitive behavioral therapy and graded exercise in participants
Stratify impact of intervention by various parameters including duration of illness, onset type, early life stress, psychiatric comorbidity, cortisol responsiveness, and fMRI changes"

Pacing and CFS

I don't have the (mental) energy to blog every day, although I often have a siesta maybe I should follow this advise and make sure I rest every day rather than fighting it?

Pacing is not a quick fix or a
panacea. It requires many small
adjustments in how you live your
daily life. It’s not a single action or
strategy, but rather a way of living
with CFS. But the rewards of pacing,
used consistently, are greater control,
lower symptoms and, for some,
expansion of the energy envelope
and even recovery.

Physiological cost of walking in those with chronic fatigue syndrome

Interesting research showing those with CFS have physiological differences to those without...a verifiable symptom which I very much doubt would be changed in any way by CBT.

AddThis utility frame: "Conclusion: The physiological cost of walking was significantly greater for people with CFS compared with healthy subjects. The reasons for these higher energy demands for walking in those with CFS have yet to be fully elucidated."

Thursday, October 22, 2009

Martin Pall on XMRV

Comments on XMRV, CFS and Fibromyalgia by Martin Pall

From Teewinot

Comment: These data apparently show that XMRV is not specific for CFS/ME but rather occurs in other disease states, as well as in some normals. My own view is that this makes it much more likely to be an opportunistic disease, caused by the changes in immune function and other properties of these diseases, rather than a primary cause. Specifically, the retrovirus, based on its DNA sequence, has its replication stimulated by NF-kappaB activity, an activity that is elevated as part of the NO/ONOO- cycle and has been reported to be elevated in CFS/ME. Furthermore, the low NK cell activity and other types of immune dysfunction, that occurs in these various diseases, may also be expected to stimulate the ability of the virus to maintain itself in disease sufferers.

In order to show that it is the primary cause of CFS/ME, it is necessary to show that XMRV follows Koch's postulates, but so far it does not apparently follow Koch's first postulate, which requires that it always occurs in people with the disease but does not occur in normals. The other three Koch's postulates have not been tested.

In contrast to that, we have a good fit to the five principles underlying the NO/ONOO- cycle for both CFS/ME and fibromyalgia. Because one can argue that the fit to these five principles serve very much like Koch's postulates for NO/ONOO- cycle disease, I will argue that we have a substantially more compelling case for a NO/ONOO- cycle etiology than we do for an XMRV infectious etiology for either CFS/ME or fibromyalgia.

That does not mean that XMRV is unimportant, however. Even if it turns out to be an opportunistic infection, like mycoplasma and HHV-6 are, it still may contribute to the etiology of the disease. And it still raises the question of whether we can cure cases of CFS/ME and fibromyalgia simply by normalizing the NO/ONOO- cycle as opposed to normalizing it and also using antivirals to depress XMRV and/or HHV-6. This is a question and I don't claim to have the answer to it, although my hope is that normalizing the cycle will also cure at least some of these infections, that may not be true.

There have been comments in the media to the effect that this finally shows that CFS/ME is physiological, not psychological. This is true, but this should have been obviously true anyway, at least six or seven years ago. Nevertheless the media coverage of CFS/ME obtained by Mikovits and her colleagues must be viewed as a true gift to those interested in extending public knowledge of this disease.

Martin L. (Marty) Pall

European Commission answers a question on Fibromyalgia and Chronic Fatigue Syndrome

They exist, hurrah!!!!

[One can see this answer in different European languages by going to:

Questions parlementaires

Answer given by Ms Vassiliou
on behalf of the Commission

As the Commission has indicated in its replies to written questions E
4898/08 by Mr Kilroy-Silk, E 6262/08 by Mr Popa and E-3734/09 by Mr Higgins
, the nature of the two disorders, Fibromyalgia and the Chronic Fatigue
Syndrome (CFS), have been, during years, controversially discussed. This
situation had given rise to major differences of opinion concerning the
ability of fibromyalgia and CFS patients to work, and to their entitlement
to social security benefits. In such context of scientific controversy, it
was difficult for the Commission to promote actions related to these
diseases. Nowadays it appears as an established and accepted fact that these
syndromes are genuine, severe and incapacitating disorders, even if
controversies remain, and even if there are still discussions in relation to
their most appropriate terminology and classification.

Consequently, the current version of the International Classification of
Diseases (ICD-10) includes Fibromyalgia (Code M79.7) and there is no reason
for refusal of treatment in any Member State on the basis of a supposed non
existence of the disease as in the past.

Wednesday, October 21, 2009

ME/CFS to be treatable?

AddThis utility frame:

"But the really good news is that if XMRV is the puppet-master of ME/CFS, it conceivably could be very treatable. Theoretically, more treatable than HIV. Lots of work to do.

The politics of ME/CFS are daunting. But now may be the time to forge ahead and get something done. Congratulations again to the authors and the Whittemores. It is time for the CDC and the NIH to be constructive and do some science....

But now things are different. Now I am not going to be too optimistic - I think XMRV is going to turn out to be the "cause" of ME/CFS, and I think treatments will be available from every family physician in America who accepts Medicare.

The question is whether this occurs next year or 20 years from now."

Energy Index Point Score® (EIPS®)

About Chronic Fatigue Syndrome (CFS)
Chronic Fatigue Syndrome, also called Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephylomyelitis (ME), affects as many as 4 million people in the US alone, by CDC estimates, with a quarter disabled. It affects more Americans than AIDS, lung cancer and breast cancer combined. Research by the National Chronic Fatigue foundation found CFS sufferers average age of death to be as much as 20 years premature to the average American.

It is a multi-symptom disease, affecting the cardiovascular, immune and central nervous system. The most publicized symptom of the disease is the crippling fatigue, with most patients bed-ridden for all but a few short minutes or hours per day. To the naked eye these patients may look healthy, due to the "invisible" nature of the symptoms, many times causing confusion regarding its legitimacy.
Energy Index Point Score® (EIPS®)
A Functional Capacity Measurement Tool
for Chronic Fatigue Syndrome (CFS) Patients

This is going on my cork board, great to use for showing doctors, consultants etc the extent of your disability

Re Universal Measurement tool for Chronic Fatigue Syndrome

Hope it is ok to repost it but it sounds like a valuable tool for both doctors and patients...

For Immediate Release
Ann Cavanagh, Communications Director
Dr. A Martin Lerner CFS Foundation
+1 415.990.7150

Physician Challenges Chronic Fatigue Syndrome Community to Implement Universal Measurement Tool

• Universal tool for Chronic Fatigue Syndrome (CFS) will improve evaluation, treatment and legitimacy of disease
• Energy Index Point Score® (EIPS®) Measures Disability of CFS Patients
• EIPS® validated through research published In Vivo: The International Journal of Experimental and Clinical Pathophysiology and Drug Research

BEVERLY HILLS, MI – October 19, 2009 — Dr. A. Martin Lerner of the Treatment Center for Chronic Fatigue Syndrome ( in Beverly Hills, MI issues an immediate call to action to the Chronic Fatigue Syndrome (CFS) community - in an effort to implement a universal measurement guideline for the treatment of CFS.

"The CFS community urgently requires a common measurement to evaluate and treat patients. Just as oncologists are able to determine treatment and prognosis based on the stage of cancer, an infectious disease physician can do the same for CFS," says Dr. A. Martin Lerner, Founder of The Treatment Center for CFS in Beverly Hills, MI.

"With measurement tools comes a common language for research, a universal standard for evaluation and treatment, and ultimately the legitimacy this disease deserves. I issue a call to action today, to physicians and patients alike, to join me in using the Energy Index Point Score® system for treatment of CFS."

Dr. A. Martin Lerner of The Treatment Center for CFS in Beverly Hills, MI has devoted the past 20 years of his life to research and treatment of CFS after recovering from the disease himself. During his efforts, Dr. Lerner realized the need for a measurement tool to evaluate the degree of disability for each patient, as well as track the success of each recovery. Without a benchmark, fatigue was too subjective and difficult to measure. From this need he created the Energy Index Point Score® (EIPS®), Registered, U.S. Patent and Trademark Office - a functional capacity measurement tool for CFS patients (reference attached PDF for the EIPS® system).

The EIPS® system defines the severity of patient fatigue, 0-10, through measurement of real-life situations including one's ability to sit, stand, be out of bed, work, perform housework, socialize, exercise. The EIPS® level is determined through discussion between the physician and patient. A change in EIPS® level of one is a significant change in health and lifestyle for the patient, as CFS symptoms decrease when the EIPS® increases. For full EIPS® tool visit

"Using the EIPS® as a benchmark for my practice and research has improved my ability to gauge illness as well as capture individuals' improvements. It is also an extremely helpful teaching tool for discussing parameters with a patient…what they can and can't do as they heal" says Dr. Lerner.

"As a CFS patient, the EIPS® has helped me understand what my short-term and long-term goals are and should be. For example, I know that I'll relapse again if I start to exercise before I'm an 8," says Carol Gill, CFS patient of the Treatment Center for CFS. "Before I started treatment with Dr. Lerner I didn't know how to manage my symptoms. I was up one month and down the next. With the use of his EIPS® management tool I've watched myself steadily improve over time."

The EIPS® has been validated as a measurement for disability in patients with CFS through a research effort published by In Vivo: The International Journal of Experimental and Clinical Pathophysiology and Drug Research, entitled "Validation of the Energy Index Point Score to Serially Measure the Degree of Disability in Patients with Chronic Fatigue Syndrome."

"In an effort to move forward in the treatment of this horrible affliction, we as doctors need to join together and assess patients uniformly. Just as the US government has assigned standard categories for storms in order to assess damages and prepare next steps, we as doctors who treat CFS need to rely on benchmarks for our patients in order to assess physical ailments and prepare our next steps," says Dr. Lerner.

XMRV - the Potential For Change
by cort on October 19, 2009

This discovery has the potential for being a world changing event in every way for chronic fatigue syndrome patients. If it really works out - still an if - one almost has to think in inter-galactic terms to find an appropriate analogy of how different things could be five years from now. The illumination this type of discovery could cast would prompt researchers to travel down pathways we can’t even imagine right now. One wonders if any disease has had such a dramatic turnaround as this one may be in store for....

So what could happen if this finding really works out? What can we expect if this virus is shown to cause ME/CFS (and possibly other diseases ). Why not dream a little?

Funding explodes - Chronic Fatigue Syndrome is funded like a small disorder but it’s not a small disorder. It effects about 1 million people. Studies have shown that it causes about 25% of those affected to go on disability. It costs families about $20,000 a year. It costs the nation about $20 billion dollars a year in economic losses. That’s a lot of money even for a disease.
Yet this major disease is ranked about 210th in rank of the 215 diseases and conditions in NIH funding. It receives about 3 million dollars a year from the NIH. That’s chicken feed, chump change the NIH throws to keep the beggars quiet. It’s a rounding error for AIDs funding.
It’s definitely not disease solving money - you can’t solve any disease at three millon dollars a year. Ten million dollars is still peanuts and hardly worthy of mention. Consider that asthma causes much lower economic losses than ME/CFS yet gets 250 million dollars a year in federal funding. What this means is that there’s ample, ample room for this field to grow. Given its size and scope once this disease is validated think hundreds of millions of dollars A YEAR in funding once the field gets built up. That’s more funding in one year than this disease has gotten in twenty.
New Faces and New Places - Expect a lot of new faces from a lot of high places as the field starts to leverage the assets of a huge cadre of pathogen researchers.
Bye- Bye Office of Women’s Research Hello NIAID - The little CFS program that’s been slowly sinking in the backwater that’s called the Office of Research Of Women’s Research (ORWH) where its received no funding (that’s no funding!) gets moved back into the mighty billion dollar National Institute of Allergy and Infectious Diseases (NIAID).
CDC - After wiping the egg off their face expect things to change at the CDC. It’s hard to imagine them keeping around a virologist (Dr. Reeves) who not only missed the biggest virology in several decades but publicly trashed the finding and has had little interest in anything viral in this disorder. Let’s not forget the virologists at the CDC that will probably be salivating at the chance not only to unlock the mysteries of chronic fatigue syndrome but perhaps fibromyalgia, autism, prostate cancer and other disorders. If this works out the CDC, like any institution,will want its share of the glory. Look for it to throw its ace virologists into the fray.
Ampligen - Expect Ampligen to finally be approved by the FDA either now or not long from now. If not now expect a well designed, well-funded study (finally!) to quickly show the drug works and for it to get approved shortly after that.
Treatment Studies - expect a slew of treatment studies from drug manufacturers seeking to expand the market for their products.
Another Dream to Come True - Expect Annette Whittemore’s dream - of multiple WPI’s centered around the present (but larger) WPI - to come true.
Annette Whittemore Wins the Nobel Prize - OK, so that’s unrealistic but she, her husband, Dr. Peterson, Dr. Mikovits, Dr. Lombardi and the team should win our version of the Nobel Prize (whatever that is)
Right now there’s still alot of hard work ahead and critical questions to answer and if it does happen it will take time but there’s reason to believe it could. Researchers often, at least in public, play down expectations but the WPI has not. Both in their public announcements and even more so behind the scenes they are very confident in their findings.

Saturday, October 17, 2009


Strong words indeed!

R.E.S.C.I.N.D.: "Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the
Cause of Fatigue Syndrome?” - posted online Oct 15, 2009"

RESCIND would like to emphasize what we feel are probably the two most powerful quotes on record in M.E. (C.F.S.) history...

Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the
Cause of Fatigue Syndrome?” - posted online Oct 15, 2009

"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V.
patients. My H.I.V. patients for the most part are hale and hearty thanks to
three decades of intense and excellent research and billions of dollars
invested. Many of my C.F.S. patients, on the other hand, are terribly ill
and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I
had to choose between the two illnesses (in 2009) I would rather have H.I.V."

Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name
Change Movement

Dr. Shelekov looked puzzled and maybe a little skeptical.
But Dr. Marc Loveless, sitting next time to him said,
"Dr. Shelekov, this man (meaning me) is telling you the truth.
I have treated more than 2500 AIDS and CFS patients over
the past 12 years. and my CFS patients are MORE sick and
MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!"

I immediately said to Dr. Loveless that "YOU have to use
that line in every speech you give on this illness for the
rest of your life!" (in 1994, Dr. Loveless gave this same
testimony under oath to the US Congress).

Friday, October 16, 2009

The ME Association - MEA statement on retrovirus XMRV and ME/CFS

The ME Association - MEA statement on retrovirus XMRV and ME/CFS: "ME ASSOCIATION POSITION

These are clearly important research findings that could help with both the diagnosis and management of ME/CFS, and we congratulate all those involved.

However, a number of questions still have to be answered before anyone can conclude that this virus plays a significant role in either the cause, transmission, clinical assessment or management of ME/CFS. Much more epidemiology and laboratory work now needs to be done to answer the essential points set out below:

Carrying out further and larger studies using different populations of people with ME/CFS, including people at different stages of the illness (to see if the virus is present in the same percentages in both early and late cases) and in all degrees of severity.
Using different international laboratories to test for evidence of the virus.
Assessing what, if any, correlation there is between the presence of this virus and (a) severity of symptoms, (b) a clear infectious onset with a known infection, and (c) various other factors involved in sub-grouping of people under the ME/CFS umbrella.
Assessing to what extent this virus is also present in other chronic conditions, especially those such as multiple sclerosis and lymphoma where viral infections have been implicated as a causative factor.
Assessing whether this virus is acting as a benign marker of disease or immune dysfunction, or is a 'passenger virus', or whether it has a role in the actual disease process and development of symptoms.
Investigating whether the presence of the virus in healthy people acts as a predisposing factor in the development of ME/CFS (possibly when another infective trigger appears) and/or prostate cancer - rather than being involved in th"

Wednesday, October 14, 2009

Treating Chronic Fatigue Syndrome (ME/CFS): XMRV

The scientific evidence that a retrovirus is implicated in CFS opens a new world of possibilities for so many people. Scientists can now begin the important work of translating this discovery into medical care for individuals with XMRV related diseases.” Annette Whittemore

Treatment information is still decidedly sketchy. At the Reno Conference Annette Whittemore evoked the possibility that the Institute was on the road to uncovering unusual drugs that would prove helpful and indeed the Institutes uncovery of similar immune system dysfunctions in ME/CFS patients and cancer patients opened the door to anti-cancer drugs.

Now the discovery of a retrovirus opens the door to anti-retroviral drugs. Some of these drugs come, however, with a considerable downside - potentially devastating side effects - and may offer a viable solution only for a few. The WPI will be assessing the effectiveness of antiretroviral drugs in some ME/CFS patients. Dr. LeGrice of HIV/AIDS and Cancer Virology at the NIH stated that despite its retroviral roots XMRV is different enough from HIV that new kinds of drug will be needed.
The WPI has displayed, however, considerable optimism regarding the creation of new drugs to treat this infection stating One wonders if their optimism derives from the fact that the XMRV virus is much more primitive than the HIV retrovirus.


"Has science found the cause of ME?" independent

Sponsored Features Sliding Teaser - Narrow:

Hope at last for ME sufferers

Thank you, thank you, thank you for your report headlined "Has science found the cause of ME?" (9 October). This is the news that thousands of ME sufferers and their families have been awaiting for so long.

I was trying to summon up the energy to make some breakfast when my eye caught the headline, and I felt hope, almost euphoria. After 17 years of ME, with its attendant stripping away of what we could call a normal life, I hope this research will lead to a cure, or at least maybe the cynics, sceptics, and downright hostile, not least of these the medical profession, will start to treat sufferers seriously. Graded exercise therapy and cognitive behaviour therapy need to be re-evaluated.

How good it was, also, to read an enlightened editorial on the subject of ME, which said it like it is.

Rosey Lowry

Bury St Edmunds, Suffolk

The news of a possible scientific breakthrough in understanding ME is most welcome, though it needs to be treated with caution until replicated. If the research does prove to be a breakthrough, it will not be before time. As your leader so rightly points out, people with ME have suffered the most shameful neglect for far too long.

Action for ME has been calling for research into this disabling condition for over 25 years. The barrier has always been the prevalent but unproven theory that ME was psychosomatic. Now, with the publication of the US data, it is time to cast off the past and tackle research with the whole-heartedness such a debilitating and life-destroying illness deserves. It is not just money that is needed, but a new mindset on the part of doctors, researchers and government alike.

Clare Francis

President, Action for ME

London W8

What happens now that 95 per cent of the study group of myalgic encephalomyelitis sufferers have been found to have antibodies to the highly contagious retrovirus XMRV, and 65 per cent tested positively for it?

Will the UK medical authorities take this seriously enough to move quickly and test and where appropriate give currently available antiretrovirals to the quarter of a million ME sufferers, as they now do with HIV and Aids sufferers? Will they at last acknowledge just how very ill and at risk of premature death many ME sufferers are? Will they advise health workers on how to avoid contamination from retrovirus XMRV?

Or will they, as seems more likely, continue to give all research and treatment funding to the psychiatrists who have taken all ME research and treatment funding for over two decades, while pretending that ME is imaginary? Will they continue to mix ME sufferers up with sufferers of mental disorders in their ridiculously named "chronic fatigue" clinics? Will they continue the daft practice of offering only graded exercise, which makes sufferers worse, and cognitive behaviour therapy, which does nothing?

This 58-year-old sufferer of severe ME for the past 21 years would like some answers. It seems there is an epidemic of a serious contagious physical illness in the UK that the medical authorities have been ignoring for far too long.

Hilary Patten

Frome, Somerset

CFS in the news

Advertisement: "In the past 12 months, worldwide there have been 261 articles published in the peer-reviewed medical literature about chronic fatigue syndrome (CFS); there are 4,655 articles about CFS listed in PubMed.

The article published last week in the journal Science linking CFS and xenotropic murine retrovirus (XMRV) has received sustained international media attention. Even with a discovery as important as this one, it will be subject to various interpretations and will likely prompt numerous attempts to replicate the finding, the basis of “the scientific method.”

“Understanding Risk: What Do Those Headlines Really Mean?”

Every day in the newspaper or on television we see stories about new medical findings. Perhaps we hear that a certain drug causes a 300% or three-fold increase in strokes. That’s a large increase—it sounds scary. But, if you know that in every 10,000 people not taking the drug, there are two strokes, then a three-fold increase really only means six more strokes. Maybe that’s not quite so frightening. It’s also confusing that sometimes stories seem to report opposite results—a new vaccine prevents a devastating infection, or it doesn’t. How are we to make sense of such stories? How do we know what to believe?

Fact sheet from the
National Institute of AgingThis fact sheet ("

Saturday, October 10, 2009

Does a virus cause ME?

Does a virus cause ME?: "The front page of today’s Independent asks whether scientists have found the cause of ME (myalgic encephalitis), also known as chronic fatigue syndrome (CFS). The newspaper reported that researchers have found a “strong link” with a retrovirus called XMRV.
This study compared blood samples from 101 CFS patients with samples from 218 people without it. It found evidence of the XMRV virus in about two-thirds of the people with CFS and less than 4% of people without the disease.
These findings alone do not prove that the virus causes CFS, because they do not show whether the infection occurred before or after CFS developed. The research paper is cautious in its conclusions, saying that XMRV “may” be a contributing factor to CFS, but the opposite may also be true: CFS may make people more susceptible to infection with this virus.
Despite these limitations, these findings will be of interest to the research community, doctors, and patients. Larger studies and research that establishes whether the XMRV infection occurs before or after the onset of CFS will be needed before any conclusions can be drawn."

Friday, October 09, 2009

Whittemore Peterson Institute - XMRV

“This is the breakthrough that we have been hoping for. Now we have
scientific proof that this infectious agent is a significant factor in
ME/CFS,” said Annette Whittemore, founder and president of WPI and
mother of a ME/CFS patient. “Patients and their doctors will soon have
a blood test to verify their diagnosis and provide the answers that
they’ve been seeking.”

Daniel Peterson, M.D., medical director of WPI added, “Patients with
ME/CFS (XAND) deal with a myriad of health issues as their quality of
life declines. I’m excited about the possibility of providing patients
who are positive for XMRV a definitive diagnosis, and hopefully very
soon, a range of effective treatments options.”

Information relating to XMRV associated neuroimmune disease can be
found at Those with XAND (ME/CFS) and/or
fibromyalgia, interested in participating in research studies to
further the development of diagnostic tests, should complete the
questionnaire available at

The Center for Molecular Medicine, now under construction, at the
University of Nevada School of Medicine in Reno, is the future home of
the Whittemore Peterson Institute.

“We’re excited about the opening of our new facility next summer,
which will not only add thousands of square feet to our existing
laboratory space, but will also provide new space for comprehensive
patient care,” added Whittemore.

Whittemore Peterson Institute - XMRV: "We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.
This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.
Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.
As National Academy of Sciences member and expert retrovirologist, John Coffin wrote in the commentary accompanying our landmark publication in Science 'One New Virus-How many Old Diseases'. We look forward to translating this discovery into treatment options!"

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS) is a debilitating disease
of unknown etiology that is estimated to affect 17 million
people worldwide. Studying peripheral blood
mononuclear cells (PBMCs) from CFS patients, we
identified DNA from a human gammaretrovirus,
xenotropic murine leukemia virus-related virus (XMRV),
in 68 of 101 patients (67%) compared to 8 of 218 (3.7%)
healthy controls. Cell culture experiments revealed that
patient-derived XMRV is infectious and that both cellassociated
and cell-free transmission of the virus are
possible. Secondary viral infections were established in
uninfected primary lymphocytes and indicator cell lines
following exposure to activated PBMCs, B cells, T cells, or
plasma derived from CFS patients. These findings raise
the possibility that XMRV may be a contributing factor in
the pathogenesis of CFS.

Journal: Science [Published on-line as a Sciencexpess Report: October 8, 2009]

Authors: Vincent C. Lombardi [1*], Francis W. Ruscetti [2*],
Jaydip Das Gupta [3], Max A. Pfost [1], Kathryn S. Hagen [1],
Daniel L. Peterson [1],Sandra K. Ruscetti [4], Rachel K. Bagni [5],
Cari Petrow-Sadowski [6], Bert Gold [2], Michael Dean [2] Robert
H. Silverman [3], Judy A. Mikovits [1†]

Xenotropic murine leukemia virus-related virus - Wikipedia, the free encyclopedia

Xenotropic murine leukemia virus-related virus - Wikipedia, the free encyclopedia: "Xenotropic murine leukemia virus-related virus, sometimes shortened to Xenotropic MuLV-related virus (XMRV) is a newly identified and provisionally named gammaretrovirus which may be involved in the pathology of familial prostate cancer and chronic fatigue syndrome. Its name refers to its similarity to xenotropic murine leukemia viruses, although it does show some substantial differences. It is thought to be linked to prostate cancer by ribonuclease L, part of the cell’s natural defense against viruses. When activated, RNase L destroys RNA in an effort to halt viral gene expression. R462Q is a mutation that results in a decreased level of RNase L function, and this mutation’s presence in prostate tumors shows a strong correlation with the presence of XMRV.

The virus was discovered in cancerous prostate tissues using a microarray containing samples of genetic material from over 1000 viruses. The screen revealed the presence of a gammaretrovirus in a substantial number of the homozygous R462Q cells, but very few of the heterozygous or wild type cells. An expanded screen showed the virus present in 40% of men homozygous for R462Q and only 1.5% of those not, and also demonstrated that each case showed the same virus. [1]In another study, the viral genome was reconstructed from prostate mRNA and used to infect prostate tissues in vitro. The researchers were able to show that RNase L deficient lines were more susceptible to infection.[2] These data do not necessarily show that XMRV causes prostate cancer, but they do show that RNase L deficiency makes prostate tissue more susceptible to the virus. This in turn suggests the possibility of a link between the virus and the disease.

XMRV is even more strongly implicated in chronic fatigue syndrome: people with CFS are 54 times more lik"