Invest in ME Newsletter

April 2008 Nr. 08/04

Welcome to Invest in ME's April 2008 newsletter.


International ME/CFS Conference
The RSM Conference
Wessely's Way
New RSM Conference
Contradictions of Psychosocial Research World
Parallel Worlds
ME Stories
"Lost Voices" - the ME Book Project

The International ME/CFS Conference 2008 NEWS

CMO at the IiME Conference

In last month’s newsletter we commented on the engagement process regarding the CMO. We are pleased to announce that the CMO has agreed to be represented at the IiME International ME/CFS Conference in London on 23rd May.

This will be the first time that the CMO will be represented at the annual biomedical research conference and we hope it marks a turning point and perhaps a change in direction for a future strategy for ME/CFS. The recommendations made from the CMO's report of 2002 (see here) should have been put into practice by now but have not been. This is an indictment on the government for allowing these recommendations to remain dormant.

MRC at the IiME Conference

We are also pleased to announce that the Medical Research Council will be represented at the conference.

We have several well known authorities on ME/CFS also attending the conference, besides the speakers, and are still hopeful of pending invitations to notables being accepted.

We are also glad to welcome many ME support groups and professional healthcare staff from around Europe and from as far afield as USA and Australia. This will provide another ideal opportunity for networking, sharing news and ideas and re-invigorating ME awareness.

See our January newsletter (click here) for details of the presenters at the conference.

Genomic analysis revealed some common (neurological, haematological, cancer) and some distinct (metabolic, endocrine, cardiovascular, immunological, inflammatory) disease associations among the subtypes. It is particularly interesting that in these genomically derived subtypes, there were distinct clinical syndromes, as would be expected in a disease with a biological basis

Dr Jonathan Kerr J Clin Pathol 2007: doi:10.1136/jcp.2007.053553

The International ME/CFS Conference 2008 - Sub Grouping and Treatments of ME/CFS

RSM Conference

After several people asked our position on the planned RSM conference on chronic fatigue Syndrome we issued a statement on this subject.

Our statement on the RSM conference was made here.

However, we obviously feel that the ME community should also focus as much attention on the IiME conference showing biomedical research.

The inconvenient truth is that the government will not change course and begin to fund substantial biomedical research into ME/CFS. The indifference shown by the current, and previous UK health ministers is a clear message to all that the establishment view will not change. As some advocates have been saying for years it is left to the ME community (including patients' relatives and friends) to self-fund biomedical research.

Wessely's Way

We are again grateful to Margaret Williams and Professor Malcolm Hooper for researching their latest  article regarding the ways of the psychiatric lobby in treating ME.

These are profoundly serious issues in which Professor Wessely seems to have been shown to be completely wrong, yet no-where has it been possible to find a retraction of, let alone an apology for, the incalculable damage that many people believe his misinformed opinions and policies have caused.

Although psychiatric disorders are diagnosed on opinion and not on a definitive diagnostic test, Professor Wessely demands “evidence-based medicine” supported by a definitive test and specific biomarkers before he will accept the reality of ME/CFS.  Whilst there is as yet no specific diagnostic test, there is an abundance of biomarkers which support the diagnosis, but Professor Wessely continues his determined and sustained denial and dismissal of this scientific evidence that clearly proves him to be wrong.

The full article may be read here (PDF) or read here (web page).

New RSM Conference

IiME sent the above document to the President of the Royal Society of Medicine and also invited her to our conference on 23rd May.

We have this reply from Baroness Finlay -

Thank you for your letter and the paper on ME which includes many important references. I do appreciate being asked to the meeting on 23 May but unfortunately I have a prior engagement on that day. However I am sure you will have a most interesting day.

The RSM are planning a 'Medicine and Me' meeting specifically on ME which aims to bring together patients, carers, doctors and other healthcare practitioners to discuss care and research issues in this condition.

I do hope both meetings will ensure greater understanding of ME and the lives of ME sufferers.

We await news from the President of the RSM regarding the "Medicine and ME meeting. However, we note that another psychosocial conference is now organised by the RSM in Bristol in September (see here). Included amongst the participants are many notable psychiatrists and patients are represented by AYME - who often seem to be involved in these psychosocial conferences  -and whose medical adviser (Esther Crawley - also speaking at this conference) now claims in the AYME Link magazine that up to 94% of children seen in specialist ME/CFS services (one of the 13 CNCC ME Clinics) get very much better or completely better after treatment.

Perhaps one should not be surprised at yet another establishment event being organised to promote a psychosocial view of ME.

Our reply to the Baroness is being prepared.

and more of the same...Contradictions of the Pyschosocial Research World

After reading Margaret Williams'/Malcolm Hooper's paper above it is revealing to read the latest paper to come from proponents of the view of ME as a behavioural illness [Etiology of Chronic Fatigue Syndrome: Testing Popular Hypotheses Using a National Birth Cohort Study - see Harvey SB, Wadsworth M, Wessely S, Hotopf M.(2008)] (Note - the term CFS is used by these authors to cover ME as well).

The conclusion of this paper is that -

Individuals who exercise frequently are more likely to report a diagnosis of CFS in later life. This may be due to the direct effects of this behavior or associated personality factors. Continuing to be active despite increasing fatigue may be a crucial step in the development of CFS

Yet it is very interesting to note that the NICE guidelines (heavily influenced by Wessely-school psychiatrists) advised pwme against resting and advised patients to carry on with activities even if they feel bad!

Similar studies by psychosocial researchers state that the causes of CFS could be -

  • sedentary behaviour - [Childhood predictors of self reported chronic fatigue syndrome/myalgic encephalomyelitis in adults: national birth cohort study Viner R, Hotopf M.(2004)]

So, if one were taking the above studies seriously, then being either active (first study) or sedentary (the last study) at one point in one's life can lead to CFS (or myalgic encephalomyelitis) in later life. The contradictions are a clear indication of the lack of robust science in all of the psychosocial-oriented views of ME.

To find the cause of ME research must focus on genetics, familial illnesses, infections, vaccinations, occupational hazards, the environment, chemical exposure, major traumas , surgeries etc.  Most people with ME report being healthy and active prior to becoming ill and many can pinpoint a day when their illness began.

It would be interesting to see what the results would be if similar research looked at the behaviour of people later diagnosed with an illness. People with cancer, heart disease, diabetes etc. might well turn out to have exercised frequently, have psychiatric problems, be sedentary, been abused as children etc. Would these behaviours be seen as causative for these illnesses?

Parallel Worlds

The above topics clearly show the misinformation, the contradictions of the behavioural studies, and  the lack of rigorous science from establishment organisations and individuals which has been occurring for the past decades with regard to ME. The above also illustrates that the establishment view of ME, aided by organisations, individuals and some ME charities is continuing to sell out people with ME.

IiME have campaigned for a substantial and ring-fenced funding of biomedical research into myalgic encephalomyelitis since we were formed and have attempted to get the government and the Medical Research Council to create a policy based on science.

News recently comes that Professor Stephen Holgate, a professor of clinical pharmacology at Southampton University, is to act as chair of a new multi-disciplinary panel set up by the MRC which will focus on the subtypes and aetiology of ME/CFS as part of a plan to fertilise cross-disciplinary research activity in this field.

At first sight this might at last seem to be going the way for which we have campaigned for so long. Indeed, as we have attempted to demonstrate the necessity for Sub Grouping of ME/CFS - as proposed by the theme for our conference on 23rd May - a change in MRC strategy to  ensure that research on sub typing of ME/CFS is performed would be a great achievement.

However, IiME feel it wise to caution against premature judgement on this.

It is abundantly clear that the views expressed by Wessely-school psychiatrists have no role to play in treating myalgic encephalomyelitis.

The idea that there can be any collusion or working together with a powerful psychiatric lobby which currently controls funding for research into ME is a disservice to people with ME and their families.

Whilst a holistic approach does need to be taken toward any illness it is impossible to accommodate such blatantly biased views as have been presented over the last decades from these vested interests who have so controlled strategy and funding of research into ME.

Invest in ME take the position that any intention to bring together the biological and psychological ME/CFS factions in order to encourage the MRC to give money is misguided.

Any research performed in collaboration with the psychiatrist lobby who have so manipulated the lives of people with ME and their families over the last decades is doomed to examining relationships between valid and proven biological markers and generic, unproven and sometimes deleterious treatments. This will merely delay the only sure way of finding a cure for ME - biomedical research.

There has been an incomprehensible pattern of behaviour toward ME from government, MRC, NHS, some ME charities and individuals over the last decades and it has been the ME patient and family who have suffered. A parallel world of denial and obfuscation has existed backed by an establishment intent only on removing any real hope of curing this illness.

The only strategy which makes any sense from a scientific, moral or just viewpoint is to fund biomedical research into ME and treat ME in the same way as cancer, Parkinson's, MS or any other mainstream illness.
Attempts by organisations or individuals to mix these parallel worlds is consigning another generation of pwme and their families to the medical scrapheap.
We should not accommodate the psychiatric view with biological view of ME. There should be no attempts at mixing these up in the name of having a balanced view.

All studies performed using the  Oxford criteria do not study people with ME as classified in ICD10 G93.3.
CBT should have no more prominence in ME research than it has in heart disease or cancer. If someone is cured from ME using psychological therapies then their problem was likely psychological to begin with. No one has, to our knowledge,  been cured from cancer, heart disease, Alzheimer�s , MS etc. by CBT or similar therapies and no one claims to cure these illnesses with such therapies either. Why should it be different with ME?

We need to adopt proper diagnostic criteria, the Canadian consensus criteria, to differentiate idiopathic chronic fatigue, burn out, overtraining syndrome, fibromyalgia, multiple chemical sensitivities etc. from ME and find the correct treatment for each of these groups. We don't expect miracles but want an objective scientific approach to ME.

ME Stories

Why parallel worlds can never meet and compromises cannot occur - from our Journal of IiME Volume 1 Issue 2 -

He was here 2 and a half hours and told me to get rid of my "energise DVD (from the charity ME Research UK)", that ME was all due to deconditioning and negative behaviour patterns. He said the only one keeping me in that bed is me. The confusion is due to me not using my brain, hearing problems due to not using my ears, light sensitivity due to not going out in the light and so on and so forth. Why should I expect a blue badge when that would only discourage me from walking, he said.

I felt humiliated and ridiculed by someone who was clearly a psychiatrist of some description. He said he gave seminars to students on "people like me". He seemed to enjoy the whole thing.

-Julie (UK person with ME)

Another story to insisting on separation of these parallel worlds - from Pat Fero

Ryan is often too weak to use a regular wheel chair. Insurance is denying the motorized wheel chair prescribed by an MD, and fitted for Ryan by a medical supply company that originally had a work order *from* the insurance company to go to the home and fit a special chair. Why would that happen?

See Ryan's Story

Clinic for ME/CFS

Dr. Jonathan Kerr has recely started a clinic. This is within the Sir Joeseph Hotung Centre for Musculoskeletal Disorders.

Details can be found in the Sioseph Hotung Centre newsletter ( ) and also at

'Lost Voices' - The ME Book Project

The ME Book Project continues apace. We would still like to hear from families of younger  children with ME. So please contact us if you would like to be involved in this first phase of the project.

We have been pleasantly surprised by the contributions given already and the support of well-known ME researchers to add their names to the project.

 To enquire further and/or to participate in the project please contact IiME - click here.

Best wishes to all

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