Friday, December 30, 2011

Professor Simon Wessely once again attempts to defend the indefensible

Margaret Williams,
Defending the indefensible?

Margaret Williams       27th December 2011

Professor Simon Wessely once again attempts to defend what has already been shown to be indefensible, namely his own beliefs about the nature of ME/CFS, including his belief that graded exercise therapy (GET) has “an impeccable safety record” (Simon Wessely; Health in mind and body; The Journal of the Foundation for Science and Technology: 2011:20:7: 9 –11).

The article contains so many insupportable assertions that it cannot go unchallenged.

In his article, although he does not mention ME as such, Wessely refers to Chronic Fatigue Syndrome (CFS), but in countless articles published in medical journals, reports from official bodies such as the Joint Royal Colleges, in medical textbooks and in the media, as well as in the PACE Trial literature itself, the Wessely School insist that ME and CFS are synonymous.

In this latest article (the publishing of which is perhaps surprising, given his frequent assertions that he has relinquished his work on ME/CFS and that he no longer feels safe publishing about the disorder because of the death threats he has received, and that he now feels safer in Afghanistan), Wessely conforms to his track record of appearing to form his conclusions before he has generated the data to support his conclusions (he often states his assumptions and beliefs as though they are established fact, for example, he has asserted that people with ME benefit from “adopting the sick role” and from “secondary gain”, and that what “precipitates” ME is not what “perpetuates” it, all of which are supposition not supported by data; a further illustration is to be seen in his study of Vitamin B status in just 12 CFS patients in which he found evidence of reduced functional vitamin B status but concluded: “clearly, many patients with CFS are currently taking vitamin B…with little evidence of benefit”, yet nowhere does he provide any evidence that “many” patients are taking supplements with little evidence of benefit and his final conclusion again fails to follow from his data: JRSM 1999:92:183-185).

Wessely’s assertions in his current article are of particular interest because they provide such clear illustration of his cognitive biases, for example:

CFS illustrates the gap that lies between physical health/illness on the one hand and mental health/illness on the other”: all life-destroying diseases affect both physical and mental health, not just ME/CFS.

“CFS is a multi-factorial illness”:  Wessely does not know this, since the cause remains unknown.

To understand why some people do not get better as the months and years go by, one has to look at behavioural and psychological factors”:  this is nothing more than Wessely’s assumption; people do not recover from multiple sclerosis or from motor neurone disease, so it is telling that he makes an exception only in the case of one particular classified neurological disorder (ME/CFS): why do so, unless it is as a face-saving measure because for the last 25 years the Wessely School have rigidly and unscientifically conflated psychiatric fatigue with ME/CFS?

“The illness is then a complicated mixture of predisposition, precipitation, and perpetuation”: Wessely states this as though it were proven fact, but it is unproven and his inability to recognise this demonstrates a fundamental misunderstanding of the nature of scientific knowledge.

“A landmark trial on the management of CFS, known as the PACE Trial, was published recently in The Lancet….Two treatments, graded exercise and CBT, clearly made a difference, although they were certainly not ‘magic bullets’: not only were the interventions used in the PACE Trial very far from being magic bullets, the Chief Principal Investigator himself described them as being “only moderately effective”.

“For those who appreciate these things, the trial is a thing of beauty”:  for those who appreciate these things, the PACE Trial  -- which cost £5 million -- has been described as a travesty of science and a tragedy for patients; the conclusions were flawed; the primary outcome measures were dropped; ratings that would qualify a participant as sufficiently impaired to enter the trial were deemed by the Principal Investigators (PIs) to be “within the normal range” when recorded on completion of the trial; there were significant conflicts of interest in that all three PIs work for the insurance industry (whose managers insist that claimants undertake a course of CBT and GET --  called “rehabilitation” -- which, if people are too ill to do so or if they know from their own experience that it makes worse and therefore decline, payments are stopped on the basis that claimants do not to want to get better); the PIs intentionally studied a heterogeneous population and it was conceded only after publication of the results in The Lancet that the Investigators did not purport to be studying ME; there was a failure to control the trial; there was downgrading of what constituted serious adverse events; there were many changes to the entry criteria; data was not reported and objective outcome measures were dropped; methods of scoring were changed so as to produce minimally better results, and the results were blatantly misreported in The Lancet (see  and  see also ).

We now have two treatments that we can recommend with confidence to our patients.  However, the story does not quite end there. Patient groups rejected the trial out of hand, and the internet was abuzz with abuse and allegations.  The main reason for this depressing reaction was the stigma that attaches to disorders perceived (rightly or wrongly) to be psychiatric in origin”:  the reason people with ME/CFS reject CBT and GET is because they do not work, but Wessely refuses to accept this, so he here provides an explanation already shown by his own research to be incorrect.

He has previously written: “CFS sufferers are also usually portrayed as hostile to psychological explanation, mental illness, and psychiatry in general….This study aims to investigate attitudes of CFS patients to psychiatric illness (and) a comparison group of patients with rheumatoid arthritis (RA) was chosen….We began with the following hypotheses: CFS patients have more negative attitudes to mental illness…(represented by the perceived stigma of psychiatric illness)…(and) failure to identify emotional states (alexithymia) contributes to denial of the role of psychiatric disorders in the aetiology of CFS….Contrary to our hypotheses and the media accounts of CFS, we found no evidence that CFS patients are characterized by particularly hostile attitudes to mental distress….Our study also failed to demonstrate any overall differences in personality traits that may underlie negative attitudes to mental illness or psychiatry….The… alexithymia scores found in the CFS compared with the RA patients were contrary to our original hypothesis….There was no difference between CFS and RA patients in hostility to mental illness….This study provides no evidence to support the anti-psychiatry tone that is so striking in the popular literature on CFS” (Personality and Social Attitudes in Chronic Fatigue Syndrome.  Barbara Wood and Simon Wessely; J Psychsom Res 1999:47:4:385-397).

If one obtained identical results to the PACE trial, but this time with anti-viral drugs, the reaction would have been totally different.  This is exactly what did happen when a very small trial of a drug that modulates the immune system (and which has some nasty side effects) was greeted with acclaim from the same sources that tried to discredit the PACE trial, which tested interventions with an impeccable safety record”: GET for people with ME does not have an impeccable safety record. Indeed, there is abundant evidence from numerous surveys by ME/CFS charities of almost 5,000 patients that in such patients CBT is ineffective and that GET is unacceptable and sometimes positively harmful. 

Those surveys include one sponsored jointly by the ME Association and Action for ME (“Report on a Survey of Members of Local ME Groups”.  Dr Lesley Cooper, 2000).  Cooper found that “Graded exercise was felt to be the treatment that made more people worse than any other” and that it had actually harmed patients

Another survey of 2,338 ME/CFS sufferers (“Severely Neglected: M.E. in the UK”) was carried out in 2001 by Action for ME; its preliminary report stated: “Graded exercise was reported to be the treatment that had made most people worse”; in the final report, this was changed to stating that graded exercise had made 50% of patients worse

The 25% ME Group for the Severely Affected carried out a further survey in 2004 which found that 93% of respondents found GET to be unhelpful, with 82% reporting that their condition was made worse (

In 2005, a report (“Our Needs, Our Lives”) published by The Young ME Sufferers Trust found that 88% had been made worse by exercise (

In June 2007, through Section 16b funding from the Scottish Government, Action for ME produced a report “Scotland ME/CFS Scoping Exercise Report”, which found that 74.42% were made worse by GET.

In 2008, Action for ME published another survey of over 2,760 patients  (“M.E. 2008: What progress?”) which found that one third had been made worse by GET and that at their worst, 88% were bed/housebound, being unable to shower, bathe or wash themselves, and that 15% were unable to eat unaided. The Press Release of 12th May was unambiguous: “Survey finds recommended treatment makes one in three people worse” (

In 2009, the Norfolk and Suffolk ME Patient Survey of 225 respondents stated: “Respondents found the least helpful and most harmful interventions were Graded Exercise Therapy and Cognitive Behavioural Therapy” ( ).

The International Association of CFS/ME recently published an article by Tom Kindlon (Bulletin of the IACFS/ME: 2011:19(2):59-111: Reporting Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) that details the high rates of adverse reactions to exercise, as well as dissecting the PACE Trial in relation to the heterogeneity of subjects, the tracking of adverse events and the lack of objective outcome measures.

As Ed Lewisohn correctly points out in correspondence relating to the Frenchay Hospital’s clinic at Bristol: “You refer to ‘Frenchay Hospital’s specialist chronic fatigue, or ME clinic’, but ME is an incurable neurological condition and cannot be synonymous with chronic fatigue.  Chronic fatigue syndrome is treated by psychiatrists with graded exercise therapy, but if exercise makes (it) better, then that condition is not ME….But many patients with ME are also sent to chronic fatigue centres and receive the same treatment: they are then, shockingly, made more ill” ( ).

There is thus an abundance of empirical evidence that GET can result in high rates of adverse effects.

Why is it that the Wessely School, who claim to be so committed to evidence-based medicine (EBM), are permitted to continue to disregard the evidence that proves them to be wrong about the nature of ME and about the efficacy of GET in those suffering from it?

The answer may be because, like so many of the Wessely School myths, EBM does not actually exist.

In 2009 Bruce Charlton, Professor of Theoretical Medicine at the University of Birmingham, clarified the facts in relation to EBM: “It is obvious that EBM was from its very inception a Zombie science….A Zombie science does not perform any scientific function, so it is invulnerable to scientific critique since it is sustained purely by the continuous pumping of funds….The massive success of EBM is that it has rationalised the takeover of UK clinical medicine by politicians and managers….Zombie science is not driven by the scientific search for truth (and it is) kept moving for so long as it serves the purpose of its funders….EBM embraced a top-down and coercive power structure to impose EBM-defined ‘best evidence’ on clinical practice, whether clinical scientists or doctors agreed that the evidence was best or not….Expertise was arbitrarily redefined (and) virtue redefined as submission to EBM recommendations, so the job of physician was at a stroke transformed into one based upon absolute obedience to the instructions of EBM-utilising managers.  Indeed, since too many UK doctors were found to be disobedient to their managers, in the NHS this has led to a progressive long-term strategy of the replacing doctors by more-controllable nurses, who are now the first contact for patients in many primary and specialist health service situations…. EBM was not a real science, indeed, it wasn’t any kind of science at all (and) it was not adopted by scientists but by politicians, government officials, managers, and biostatisticians….When the UK government understood that what was being proposed was a perfect rationale for re-moulding medicine into exactly the shape they had always wanted it, the NHS hierarchy were falling over each other in their haste to establish this new orthodoxy in management, medical education and in founding new government institutions such as NICE….Suddenly, the Zombie science of EBM was everywhere in the UK…unhampered by inconveniences such as truthfulness or integrity…it was being practised by many individuals…who lacked…any training and experience in clinical medicine and who certainly did not provide direct patient care….Here was a doctrine which advocated rejecting and replacing with itself the whole model of medical science and practice of the past.  It advocated a new model of health service provision, new principles for research funding, a new basis for medical education.  And the evidence for this?  Well, none.  Not one particle. ‘Evidence-based’ medicine was based on zero evidence (but it) was proclaimed Messiah with the backing of serious amounts of UK state funding…to create a fairly-realsitic Zombie of pseudo-science….Nowadays, EBM means whatever the political and managerial hierarchy of the health service want it to mean for the purpose in hand” (Zombie science of Evidence-Based Medicine. Bruce G Charlton.  Journal of Evaluation in Clinical Practice 2009:15:930-934).

EBM, however, has proved invaluable to the Wessely School in the perpetuation of their own myths about and management of ME/CFS, to the advantage of both the state and the insurance industry.

Despite the relentless determination of the Wessely School to claim ME/CFS as a functional somatoform disorder (in his latest article, Wessely reiterates his claim that: “the greater the number of symptoms, the more likely the patient was to develop a mood or anxiety disorder”), medical science is at last ensuring that the Wessely era is coming to an end.

Whilst XMRV is now thought to be a laboratory contaminant (and the triumphant glee of those who rejoiced at this is to be greatly deplored), the role of a retrovirus has not yet been resolved: indeed, Dr Ian Lipkin of Columbia University and chief virus-hunter for the NIH was reported on the Wall Street Journal blog on 27th December 2011 by Amy Dockser Marcus to have said that all the scientists and doctors involved in the NIH study, including the authors of the retracted PNAS and Science papers, “are committed to completing this study because none of us believes that the issue of retroviral infection in CFS/ME is resolved”.

Retrovirology apart, there is now undeniable evidence of multi-system damage in ME/CFS, including inflammation of the blood vessels, hypoperfusion of the brain, delayed recovery of muscles after exercise, dysfunction of the immune and neuroendocrine systems, and evidence of marked abnormalities in gene expression profiling.

Professor Nancy Klimas is to head a new Institute for Neuroimmune Medicine (specifically ME/CFS) at Nova Southeastern University: she will be providing cutting edge research and education of health care professionals, combined with care of patients; she will focus on systems biology, connecting neuro-imaging experts with scientists researching inflammation and genomics/proteomics, as well as collaborating with experts in neurotoxicology.

There is also the work of Dr Jose Montoya’s Chronic Illness Initiative at Stanford; the husband and wife team of Drs Light at the University of Utah; Dr Derek Enlander’s Chronic Fatigue Initiative with a very large budget for research at Mount Sinai, as well as the Public Health and Neuroimmunology Unit (PHANU) at Bond University in Australia (, plus the committed work of Professors Mark VanNess and Christopher Snell at the University of the Pacific, all of which disprove the beliefs of the Wessely School that ME/CFS is a behavioural disorder.

Furthermore, the UK Medical Research Council has finally recognised the need for biomedical research into ME/CFS and is funding £1.6 million for research into aspects including autonomic dysfunction, aberrant mitochrondrial and cytokine production in skeletal muscles, and immune system dysfunction.

As clinical psychologist Dr Dorothy Rowe pointed out in 1993: “People who know absolutely that they are right are very dangerous” (The Observer, 14th November 1993), but who paid any attention?  Father Cormac Rigby did: “The greatest enemies of truth are those who think they have a monopoly of truth” (The Lord be with you; Family Publications, Oxford, 2004).

See also: Another cracker from the CBT school of denial: “The bastards don’t want to get better”…

Thursday, December 29, 2011

A Message from CII Director W. Ian Lipkin Regarding the XMRV/MLV CFS/ME Study

By W. Ian Lipkin, MD Director, Center for Infection and Immunity:
 Posted 12/28/2011 3:40:37 PM

December 28, 2011
Dear Colleagues and Friends in the CFS/ME Community:
This letter is written to clarify the status of the XMRV/MLV CFS/ME study I am coordinating at the request of the National Institutes of Health. Although frequently described as the “Lipkin Study,” it is in fact the Alter, Bateman, Klimas, Komaroff, Levine, Lo, Mikovits, Montoya, Peterson, Ruscetti, and Switzer study, designed by these 11 investigators to bring their best methods for case ascertainment and characterization and state-of-the-art molecular and serological diagnostic tools to address the question of whether a retrovirus is associated with disease. My role in conjunction with Mady Hornig and Bruce Levin at Columbia University is to ensure that the study represents an appropriately powered, definitive, representative sample of CFS/ME patients across the United States; to receive and distribute samples; and to assess results obtained in individual laboratories for consistency and evidence for or against an association between retroviral signal and disease. I use the term “signal” because any finding related to a retrovirus, whether infectious or noninfectious, genetic material, protein, or antibody, may provide insights into disease or allow development of diagnostic tests even if a causative relationship is not established. My condition on accepting this charge from the NIH and the clinical and laboratory investigators is that each participant agree to unconditionally accept group criteria for defining cases to be used in this study. Laboratory investigators were also required to unequivocally endorse their results at the conclusion of the study. Several months were required to develop clinical criteria for case and control definition and to complete approvals for human subject protection. We encountered additional delays when Dr. Mikovits could no longer pursue her work at the WPI. At that juncture, some parties suggested that the work proceed at WPI without her. However, in my judgment, the value of this study rests in its inclusion of the original investigators who reported the XMRV/MLV findings. Thus, I was grateful when we found a way to fully engage Dr. Mikovits. At the time of this writing we have collected and distributed for laboratory analysis samples from 123 CFS/ME patients and 88 matched control subjects. We intend to complete collection and analysis of samples from 150 patients and 150 controls in early 2012.
There is criticism in some quarters that this study is unnecessary given results obtained by other investigators with other samples. However, the participating clinical and laboratory investigators and our team at Columbia do not agree. We are fully committed to completing the work rapidly and rigorously. For those who continue to express concerns that this study is an inappropriate use of resources in a challenging fiscal environment, please be assured that more than 85% of the funding associated with this initiative is invested in patient recruitment and characterization and sample collection, archiving, and distribution. Thus, irrespective of study outcome there will be unprecedented opportunity to explore hypotheses other than that disease is due to XMRV or MLV infection.
Sincerely yours,
W. Ian Lipkin, MD
Director, Center for Infection and Immunity

Wednesday, December 28, 2011

Another cracker from the CBT school of denial: “The bastards don’t want to get better”…

This delightful quote by the way is from page 18, if you're interested, that is.

If you still fancy reading this report, which denies the existence of almost 5000 research papers showing that ME is a physical disease, which was obviously funded by the Medical Research Council, which we all know likes to waste shed loads of money on silly CBT and dangerous GET, but which is so sad and not even beautifully written, that I would advise you to get some anti-sickness tablets from your doctor first before you sit down and puke all over this delightful document.  

The bastards don’t want to get better.pdf

PS: this report is so sad and badly researched that the so-called researchers don't even know that ME means Myalgic Encephalomyelitis and not myalgic encephalitis

PS 2: thanks to HP who spotted this very professional remark in this paper, which wasted more than 1 million taxpayers pounds on a therapy which doesn't work for ME, which we have known for decades

See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients 
See also: The putative agent of ME/CFS can be transferred to monkeys 
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME

See also: GET (graded exercise therapy) is torture for ME patients and directly contravenes the do NO Harm principle of the GMC
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
See also: Dr. Hilary Jones, When you say, "ME is controversial", did you check that with Alison, Annabel and Sophia? Now, I'm sure you didn't, because all three died of ME. Yes you read that right, …

Dr. Judy Mikovits: Shine's Reader's Choice Woman of the Year 2011

By Jessica Ashley, Senior Editor, Parenting | Healthy Living – Fri, Dec 16, 2011:

Michelle Obama, Sandra Bullock, Elizabeth Edwards, teen activist Constance McMillen, Chef April Bloomfield, and community member Brett Blumenthal are just a few of the amazing women who have worn a crown as one of Shine's women of the year.

While our editors throw out many names and list off the accomplishments and awards that make celebrities, politicians, activists, and real, hard-working women stand out in their efforts to make all of our lives better, there's always one lady who...well, shines brightest.

Judy Mikovits- Shine's Reader's Choice Woman of the Year 2011 Winner: Researcher Judy Mikovits. Her breakthrough studies of chronic fatigue syndrome made her a hero to many. But her firing and felony arrests late this year cast her in a suspicious and controversial light. Shine readers rallied around her, making Mikovits your overwhelming winner.

Read more>>

See also: A big thank you to Dr. Judy Mikovits

Tuesday, December 27, 2011

Rumours have it that the Lancet is about to retract the ME/CFS PACE trial

A controversial study published in the Lancet by CBT psychiatrists which used the Oxford criteria to make sure that no one with ME/CFS was included in the ME/CFS PACE trial, might be retracted if rumours circulating on the Internet are correct.

A source very close to the powers that be at the Lancet has issued the following statement:

“It is our current view that the PACE trial has not withstood the test of independent verification and proper peer review and that this paper, although beautifully written, should be retracted and shredded come the New Year.”

See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
See also: GET (graded exercise therapy) is torture for ME patients and directly contravenes the do NO Harm principle of the GMC
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients

See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise
See also: Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
See also: Journal for Psychotherapy 2011: CBT and GET are ineffective and potentially harmful for many ME/CFS patients

See also: Pacific Labs in California (Snell, Stevens et al): it is dangerous to put patients with M.E. through a graded exercise program
See also: Tom Kindlon's paper: "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
See also: World exclusive: Prof Wessely admits in the BMJ that there were no ME/CFS patients in the ME/CFS PACE trial

Monday, December 26, 2011

Prof Wessely continues to promote graded exercise therapy despite all the evidence against its use in ME because of the detrimental effects it has on the health of ME patients

If you fancy to read his delightful comments about the ME/ CFS PACE trial that deliberately used the Oxford criteria

to exclude the patients that were supposed to be in the trial, then scroll to page 10, but make sure you've got a bucket ready.

See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
See also: GET (graded exercise therapy) is torture for ME patients and directly contravenes the do NO Harm principle of the GMC
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients

See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise
See also: Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!

See also: Journal for Psychotherapy 2011: CBT and GET are ineffective and potentially harmful for many ME/CFS patients

See also: Tom Kindlon's paper: "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
See also: Pacific Labs in California (Snell, Stevens et al): it is dangerous to put patients with M.E. through a graded exercise program

Wednesday, December 21, 2011

MRC’s Prof Stephen Holgate: There is a pressing need to understand the causes of CFS/ME so we will NOT spend a penny of the 1.6 million pounds to look for the cause of ME

by Tony Britton on December 21, 2011:

Medical Research Council announces ME/CFS research projects worth £1.6m

From a UK Medical Research Council press release: embargoed until 00:01am, 21 December 2011
The Medical Research Council (MRC) has awarded more than £1.6m for research into the causes of the debilitating condition chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
The investment will fund five new projects to investigate the mechanisms and underlying biological processes involved in the illness, which could eventually lead to better diagnosis and the development of more effective treatments.
CFS/ME is a complex and debilitating condition that affects around 250,000 people in the UK , including children. Symptoms include profound physical and mental fatigue, muscle and joint pain, disturbed sleep patterns and concentration and memory problems. The combination and severity of symptoms varies from patient to patient, making it a difficult condition to diagnose and treat.
Professor Stephen Holgate, Chair of the MRC’s Population and Systems Medicine Board, said:
“There is a pressing need to understand the causes of CFS/ME, and the MRC is delighted to announce substantial funding to address this. The quality and breadth of the scientific proposals we received in response to our funding call exceeded expectations and led to us funding more studies than we had originally anticipated.
“We’re especially pleased that the five new projects address many of the priority areas identified by our CFS/ME Expert Group in collaboration with charities and leading researchers in the field. We hope the awards will drive forward the research agenda in this area, paving the way for new diagnostic tools and treatments.”
Dr Charles Shepherd, member of the MRC CFS/ME Expert Group and trustee of the ME Association, which has agreed to provide £30,000 to co-fund one of the five projects, said:
“The ME Association is very pleased to learn that the MRC has followed up the research priorities identified by the Expert Group and agreed to fund five high-quality studies that aim to identify important biomedical abnormalities that may be involved in the underlying cause of CFS/ME.
“The patient community will particularly welcome research involving biomarkers/biological fingerprints, which could lead to a diagnostic test, and immune system abnormalities, which could lead to more effective forms of treatment.
“The fact that one of the studies is being co-funded by the charity sector marks a much needed step forward in co-operation between patients and researchers in this field. This initiative could be utilised to help fund additional research involving the priorities not yet covered by this announcement.”
The MRC has striven to stimulate high quality CFS/ME research for a number of years. Most recently the specially constituted MRC CFS/ME Expert Group, which involves leading researchers in the field and related areas, along with representatives from two CFS/ME charities, identified six priority areas where important research questions remained unanswered.
In February 2011, the MRC issued a £1.5m call for proposals in these areas, aimed at encouraging fresh partnerships between established CFS/ME researchers and those with strong scientific credentials, but new to this field. The key areas were:
• Nervous system disorders
• Cognitive symptoms
• Fatigue
• Immune dysregulation (eg. through viral infection)
• Pain
• Sleep disorders
In response to the high quality of the applications received, the MRC decided to provide an extra £150,000 to support the package of successful projects. The awards range in total value from £120,000 to £450,000 and the successful applicants were:
· Dr Wan Ng, Newcastle University
· Professor Julia Newton, Newcastle University
· Professor Anne McArdle, University of Liverpool
· Professor David Nutt, Imperial College London
· Dr Carmine Pariante, King’s College London
While the applications addressed most of the priority areas highlighted in the call, the MRC will announce shortly how it plans to stimulate research activity in those areas which were not covered.
Notes to editors
Contact Hannah Isom
Senior press officer, Medical Research Council
T: 0207 395 2345 (out of hours: 07818 428 297)
A full list of the five fully-funded programmes is included below, along with short summaries of the research proposals.
Identifying the biological fingerprints of fatigue
Principal investigator: Dr Wan Ng
Institution: Newcastle University
Summary: Researchers will analyse the immune systems of more than 500 patients with primary Sjögren syndrome – a chronic condition with similar symptoms to CFS/ME, including intense fatigue. Scientists will look for immune system abnormalities in these patients to help them identify the biological “fingerprints” of fatigue. It is hoped this will improve their understanding of the mechanisms of fatigue with a view to developing new treatments. It also offers the hope of a clinical test for the diagnosis of CFS/ME.
Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment
Principal investigator: Professor Julia Newton
Institution: Newcastle University
Summary: Researchers will explore what causes dysfunction of the autonomic nervous system – characterised by dizziness and light-headedness – present in up to 90 per cent of CFS/ME sufferers. They will use functional magnetic resonance imaging (MRI) to measure changes in blood flow to the brain and how this relates to cognition and nervous system dysfunction. The researchers hope their work will lay the foundations for new diagnostic tools, a better understanding of nervous system abnormalities and the development of targeted treatments aimed at reversing these abnormalities.
Modulation of aberrant mitochondrial function and cytokine production in skeletal muscle of patients with CFS by supplementary polyphenols
Principal investigator: Professor Anne McArdle
Institution: University of Liverpool (joint with the University of Leeds )
Summary: Scientists will use a newly-developed technique to study the energy-generating components of muscle cells (mitochondria). Some studies have suggested that mitochondria may be dysfunctional in CFS/ME, leading to an energy deficit. The scientists hope this will help them learn more about how CFS/ME develops and becomes a chronic condition.
Can enhancing slow wave sleep SWS improve daytime function in patients with CFS?
Principal investigator: Professor David Nutt
Institution: Imperial College London
Summary: Researchers will study sleep disturbance – a core symptom of CFS/ME. Experts in CFS/ME, sleep and psychopharmacology will use a drug to increase deep restorative sleep in CFS/ME patients and measure the effect on their brain function during waking hours. It is hoped the research will increase their understanding of how sleep disturbance affects CFS/ME sufferers, with a view to developing new therapies.
Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome
Principal investigator: Dr Carmine Pariante
Institution: King’s College London
Summary: Researchers will examine the effects of a protein called interferon-alpha (IFN-alpha) on the immune system. IFN-alpha is produced as a protective response to viral infection and is commonly used to treat infections such as hepatitis C. IFN-alpha also induces fatigue and flu-like symptoms in patients, similar to that experienced by patients with CFS/ME. The team will follow patients undergoing IFN-alpha treatment for Hepatitis C over a number of months to define the biological changes that occur in relation to the development of fatigue. Their work could lead to a check-list of blood measures to predict who will develop CFS/ME, as well as identifying new targets for therapy.
For almost 100 years the Medical Research Council has improved the health of people in the UK and around the world by supporting the highest quality science. The MRC invests in world-class scientists. It has produced 29 Nobel Prize winners and sustains a flourishing environment for internationally recognised research. The MRC focuses on making an impact and provides the financial muscle and scientific expertise behind medical breakthroughs, including one of the first antibiotics penicillin, the structure of DNA and the lethal link between smoking and cancer. Today MRC funded scientists tackle research into the major health challenges of the 21st century.
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2 Comments Leave one →
  1. jace permalink
    So there’s
    *a sleep study, using drugs to increase slow wave sleep, with the Prof that annoyed the government by saying horse riding was more dangerous than ecstasy and society was illogical in its prohibitions (Nutt, Imperial)(PSY)
    *Study into mitochondrial defects – not on ME, not necessarily even on CFS/ME (McArdle, Liverpool)
    *Following HEP C patients being treated with interferon alpha, which is downregulated in Lombardi 2011, the cytokine study (Pariente, Kings)(PSY)
    *Immune system analysis IN SJØRENS SYNDROME (Ng, Newcastle)
    *Study of brain changes that cause dizzyness, using fMRI to study brain blood flow (Newton, Newcastle)
    How come 2/5ths of the studies funded are not directly looking at ME? Why is that? I thought this money was ring fenced for biomedical investigation into ME. It was little enough as it was. How come a different 2/5ths are being run at Kings and Imperial, by the usual suspects?
    I know the argument will be that the results will also apply to us, and Sjørens syndrome is very similar, but really! I feel like the bully’s stolen my lollipop that Santa gave me. Only one out of five studies can strictly be said to be filling the original brief, Newton’s, from the information given so far.
    This money represents £6.50 per head of us. Not a vast amount. Am I being too suspicious…? The devil will be in the detail, no doubt.
  2. JoT permalink
    Doesn’t look like they are saying Sjogrens or Hep C are similar to ME (ME/CFS). They appear to be saying ME is “CFS/ME”, which it is not. That CFS is fatigue, which it is, but that they can measure this subjective symptom in exactly the same way in other diseases, although scientifically they cannot. So patients with ME cannot really be sick they only have fatigue.
    Doing this they would be in breach of the WHO classification system, as it places different entities in more than one rubric. As CFS (neurological ME/CFS) although not said to be ME is place at G93.3, Sjogrens and Hep C are placed elsewhere.
    I feel throughly insulted and dismissed by the MRC who clearly have no intention of looking for the cause of this disease.


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