PERMISSION TO REPOST

Campaigning for Research into Myalgic Encephalomyelitis

What follows are the first three pages of RiME's Autumn 2004 Newsletter. We don't believe that the new NHS Centres will be in the interests of the vast majority with ME and urge people to protest now. Nor do we believe the prospective PACE and FINE Trials will benefit the vast majority who are severely affected with ME and urge people to make their protests now. Those who hold power at Westminster are doing all they can to close the door on genuine ME activists with legitimate concerns and grievances. One way in still is through the All Party Parliamentary Group on ME (APPG). Please sign RiME Petition 2 which is featured on ME Action UK and others' Websites. Please write also to your MP asking him to attend the next APPG meeting (Nov. 2004) with a view to voicing your concerns.

Best Wishes,  Paul

RiME   10 Carters Hill Close   Mottingham  SE9  4RS

rimexx@btinternet.com


 

INTRODUCTION

 

The Chief Medical Officer's (CMO) Report on 'CFS/ME' was published on January 11 2002. The Report associated ME with inactivity and faulty belief systems which could be combated via Graded Exercise (GE) and Cognitive Behavioural Therapy (CBT) respectively. These are two of the main recommendations of the Report which is featured on P2. The types of treatment offered by the new NHS Centres and satellites will be to do with the recommendations of the CMO Report.

The only other public money being invested in ME is the Medical Research Council's (MRC) PACE and FINE trials, featured on P3.

If, following the CMO Report, the Govt had recognised ME to be a physical illness (it doesn't, P4), had undertaken a national epidemiological study into ME and invested £22 million, say, into researching it's physical causes  with a further £11.1 million for 'CFS/ME services', this would be different?

It didn't and one is faced with 'same old, same old... '

RiME does not deem it sufficient for the Govt to simply offer people with ME 'CFS Services'. The management programs currently being implemented will probably help some with 'CFS'  and a few with ME (with management that it is - not finding a cure).

Worrying in this respect is the fact that the Parliamentary Group on ME (APPG) portrays the CMO/MRC processes in all too rosy a light. Glowing accounts are flowing to MPs and Lords re. the £11.1 million being invested in 'CFS/ME Services' and no one is being allowed to put the other side of the coin.

With this in mind, RiME is launching RiME Petition 2. Please sign and ask others to do likewise. If you want more petitions, send us a SAE. Please also consider sending the enclosed pro forma letter to your MP. The letter written by one of our supporters asks MPs to attend APPG meetings and represent their constituents' views. If you would prefer to write your own, even better. Please let us know whar response you get.

Some of the saddest tales we hear are about people who get ME in the early stage of their life. These people, in addition to suffering terribly, don't really experience childhood, adolescence, early adulthood... and didn't/don't get the chance to find out more about who they are or what they want.

Surely the Govt has a duty to investigate what is going wrong their bodies and try to find a cure so they have the chance to recover and play a useful role in society. This can only come about through WELL FUNDED ME RESEARCH PROGRAMS. The MRC is not the only Govt agency that can affect this. The Health Dept, if it wanted, could put substantial ring-fenced money into researching ME tomorrow.

Best Wishes,     Paul Davis.

RiME welcomes postage stamps.

RiME,  10 Carters Hill Close  Mottingham  SE9 4RS


CMO REPORT ON 'CFS/ME'

 

The Chief Medical Officer's Group on 'CFS/ME' was never independent. It was funded in part by the Linbury Trust. The launch of the CMO Group and the Linbury Trust's A Research Portfolio on Chronic Fatigue occurred jointly at the Royal College of Physicians, July 1998. According to Martin Walker (Skewed) the then CMO – Sir Kenneth Calman accepted the book which promotes psychiatric models of treatment for Chronic Fatigue as if it were a Govt report. Between March (when Calman announced the Group would be set up) and July 1998, those who believed in a psychiatric aetiology for 'CFS' moved quickly to ensure that any enquiry was restricted to looking at treatments. From the outset the Working Group was precluded from considering the difficult areas of prevalence, causation and investigation.

The CMO key Group included: Dr Anthony Cleare, a member of the Institute of Psychiatry and Linbury Trust Fellow; Trudie Chalder, a behavioural psychologist at King's who works alongside Wessely; Dr Peter White, psychologist Barts, Dr Alison Round and Professor Anthony Pinching, Medical Director of AfME. Each has promoted the view that CFS has a psychiatric aetiology, (Martin Walker, Skewed).

The CMO Report published in Jan. 2002 associates 'CFS/ME' with inactivity and activity avoidance to be combated by GE - (46):

Graded exercise is a form of structured and supervised activity management that aims for gradual but progressive increases in aerobic activities such as walking or swimming. It is based on a principle... that a principal factor maintaining the illness is inactivity... it may act as a rehabilitation behavioural therapy by gradually exposing the patient to an activity (exercise) that has been avoided.

It also associates 'CFS/ME' with faulty belief systems to be combated by CBT – (48):

... the CBT model aims to empower patients to identify, understand and modify their belief systems and behaviours, to maximise their well-being with support and guidance from the therapist... 'what we do' and 'what we think'.. can affect physical processes eg smoking, excessive alcohol intake...can contribute to illness.

Much of the CMO Group's work was done via the York Review. The Review was carried out by a team of five none of which had a medical degree. This team was assisted by a panel of 'experts' which included Simon Wessely, Harvey Marcovitch, psychiatrist who hit back at Panorama program on ME children, Chris Clark, Director of Afme who has worked with Wessely and Sharpe promoting GE and CBT and Anthony Pinching, AfME's Medical Director.

Wessely provided his own database of literature for use by the review team. One-third of the Review's references were the work of Wessely and like-minded colleagues.

The Review acknowledged that there is no effective treatment for 'CFS/ME' but concluded that the most promising results were achieved via GE and CBT.

The number who dropped out was one of the highest  for a Govt Report. The 25% Group refused to sign mainly because the Report: deliberately failed to inform people that ME is classified by WHO as a neurological disorder; was pervasively psychiatric in tone; failed to give consideration to known bio-markers of organic pathology; stipulated that GE/CBT was the only feasible management of the illness.

The structure of the twelve NHS Centres and Satellite services, currently being set up, will be based around the recommendations of the CMO Report/York Review. Many with ME don't understand why their local Group is joining the CMO Advisory Panel. One person said recently, "the Group's decision to join does not seem based on a considered, objective appraisal of the facts but more to do with 'something seems to be happening here... '. The process won't help anyone I know with ME... and what about the severely affected".


 

FINE AND PACE

 

On September 2 2002 RiME presented it's 16,114 Petition to the MRC. The presentation was followed b y a meeting in which Margaret Kearsey-Lawson and I detailed the type of research the signatories wanted: Research into the epidemiology and aetiology/pathogenesis of ME.

The day after the MRC announced it was putting £2.6 m into more psychological/psychiatric research: FINE and PACE:

FINE: Fatigue Intervention by Nurses Evaluation: to be headed by Dr A Wearden (Manchester University). Rehabilitative therapy (of a psychological nature, it would appear) will be delivered by nurses in patients' homes in NW England and N Wales. The therapy will involve four 90 minute sessions interspersed with six 30 phone conversations over a period of 18 weeks with the addition of an activity manual. The project will be funded by the MRC.

PACE: Pacing, Activity and CBT: a randomised evaluation. This will be a national trial carried out at 'CFS/ME' clinics around the UK and will involve 600 controls. The treatment manual for Pacing has been developed with the help of AfME. PACE will compare the benefits of adding Pacing, GE, CBT to 'usual medical care'. PACE will be led by: Dr P White (Barts), Dr M Sharpe (Edinburgh University), and Dr T Chalder (King's College). It will be funded by the MRC and The Scottish Chief Scientists's Office which comes under the Dept of Health.

It would appear the initial PACE trials will include patients with Fibromyalgia and be based on the Oxford Criteria:

The CFS Oxford Criteria was set out in the Oxford Guidelines - MC Sharpe et al. A Report - Chronic Fatigue Syndrome: Guidelines for Research, JRSM Vol.84, Feb. 1991, pp 118-21.

Of the 21 clinical and scientific researchers who wrote the Oxford Guidelines, eight were in psychiatry or psychology, another six were research scientists, non-psychiatric clinicians were few (see BM Hyde, The Clinical and Scientific Basis of ME/CFS, 1992, 12). Notable exclusions were DS Bell, EG Dowsett, BM Hyde, AM Ramsay and JS Richardson, experts on ME and its epidemiology.

a:-     A  syndrome characterised by fatigue as the principal symptom

b:-     A syndrome of definite onset that is not life long

c:-     The fatigue is severe, disabling, and affects physical and mental functioning

d:-     The symptom of fatigue should have been present for a minimum of 6 months during which it was present for more than 50% of the time

e:-     Other symptoms may be present, particularly myalgia, mood and sleep disturbance

f:-      Certain patients should be excluded from the definition. They include:

          i:-  Patients with established medical conditions known to produce chronic fatigue (eg severe anaemia). Such patients should be excluded whether the medical condition is diagnosed at presentation or only subsequently. All patients should have a history and physical examination performed by a competent physician

         ii:-  Patients with a current diagnosis of schizophrenia, manic depressive illness, substance abuse, eating disorder or proven organic brain disease. Other psychiatric disorders (including depressive illness, anxiety disorders and hyperventilation syndrome) are not necessarily reasons for exclusion.

The Oxford Criteria is too inclusive. A number of different types of illness including ME are being lumped together under the single banner 'CFS'. In the words of Dr Dowsett 'CFS' is a 'facile euphemism for ME... which enmeshes this serious and potentially life long neurological illness in a web of trivial fatiguing sub entities... '

The Royal Colleges Report on CFS 1996 used the Oxford Criteria and claimed up to 1.4 million people in the UK had CFS. Estimates of ME incidence are much lower.