25% ME Group Press Release
The recent publication of the ‘PACE’ Trial results has stirred up a heady mix of media reporting with much talk of ‘hope’ and ‘benefits’ and even ‘complete recovery’, all to be achieved through graded exercise and cognitive behavioural therapy. We would like to inject a cold shower of patient reality.
Contrast between findings of PACE and patient reports
Back in January 2002 the Chief Medical Officer’s report highlighted the glaring disparity between feedback from patients - graded exercise and CBT make people with ME worse – and the reported findings of controlled trials – graded exercise and CBT improves ‘CFS’. The report states:
Nine years on and the costly PACE trial - £5 million; £7,800 per participant - takes us no further forward in shedding light on this persistent lack of fit. Safe guidance on management options must address the needs of all patients.
“… the data clearly indicate that the York review [of controlled trials] results do not reflect the full spectrum of patients’ experience.” [1, 2]
Exercise, ‘psychotherapy’ and the lives and deaths of people with severe ME
Our membership survey found that 82% of those respondents who had tried graded exercise deteriorated, including some patients who were not severely affected before trying GET.  There are real lives behind such statistics.
Lynn Gilderdale and Sophia Mirza were members of the 25% ME Group.
Lynne’s suicide in December 2009 was widely covered in the UK media, as Lynn was too debilitated to take her own life without assistance. What is less well known is that Lynn Gilderdale had become very severely affected after attempting exercise:
The family followed their GP's advice and encouraged Lynn to take as much exercise as possible. But that proved to be the worst course of action, says [Lynn’s mother] Kay. "We would walk her down the road and she would get back to the house and collapse. It got to the point where she was totally bed-ridden and she couldn't sit up without going unconscious. She couldn't swallow anything at all. She was in terrible pain, with muscle spasms and she had swollen glands and lymph nodes.” 
Less well known is the truly appalling history of another young woman with very severe ME. Sophia Mirza died in November 2005, having been forcibly incarcerated in a mental institution on the basis that she was exhibiting illness behaviour and would improve under a different activity regime. It required a tribunal to release her. Sophia had been in the institutional environment for two weeks, and her extreme debility and relative brevity of her stay meant that she had not undergone a graded activity scheme. Simply being there, in an environment quite unsuited to her care needs, proved to have had a devastating effect. Sophia’s mother describes her daughter’s state of health on discharge: 
It was too late; the damage had been done. Sophia relapsed, not to where she had been before, but to a hell-hole to which she had never been. She never recovered from this ‘treatment’. For her it was the equivalent of being in a tsunami, but this one was man-made.Pathology investigation following Sophia’s death confirmed that she had had inflammation of the spinal cord - encephalomyelitis. 
Physically, she could eat, but the reactions were so severe that this precluded her body being able to accept the food. Five weeks later, any sort of liquid had similar devastating effects on her; her glands would balloon-up and she felt as if the circulation in her legs was being cut off. She could only bear about 4 fluid ounces of water a day, which was used to moisten her mouth. At the end of October she got an ear infection. Her head and neck swelled-up like a football, she was in agonizing pain.
Those last 9 weeks were something else. By virtue of this monster of a disease, she had to remain in blackout conditions and in isolation as to do otherwise would automatically tip her into another unknown hell. Even when I knew she was in agony and that she was virtually on her death-bed, she could not have the comfort of me or anyone even holding her hand or sitting with her. I had to know that my child was dying and do what caused her least pain, irrespective of my own feelings. We each had our own agony.
Before she died, I told Sophia that I wanted ‘to go public’ so that others could possibly be saved such suffering. She answered ‘then it will all have been worth it’. These were her last words.
In the light of the findings of Sophia’s inquest, the 25% Myalgic Encephalomyelitis Group reiterated our call for stopping research into ‘PACE’ and the companion ‘FINE’ trial and redirecting funding into biomedical research. [7, 8]
Why Exercise is Misguided
There can be no clearer illustration of the vast chasm that lies between the lived experience of ME patients and officially endorsed perspectives as to what works than the advocacy of exercise. Taking on board the breadth of relevant biomedical evidence that is presently available - including evidence that indicates that exercise is at best inappropriate and at worst harmful to patients – is long overdue. 
To cite but one example, at last year’s Invest in ME Conference Doctor Paul Cheney reported that “we see cardiac diastolic dysfunction in almost every case” and that “there are patients whose diastolic dysfunction is so low/poor that they would fit well into a cardiac ward awaiting transplant”. He was later asked to respond to a question from the floor: “In view of the widespread diastolic dysfunction what are the implications of using graded exercise as a therapeutic intervention?” Dr Cheney provided a carefully considered response, including that advice that we patients should “move within the limits of your illness”. However, on graded exercise he was unequivocal: “The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane.” [10, 11]
We are heartily sick of the approach that the NHS takes to people with ME. We feel a completely new approach is vital, one that takes due cognisance of the findings of academic and clinical research to date. We would also like to see the MRC begin to provide appropriate funding for biomedical research to further understanding of this terrible illness.
The 25% ME Group,
Support for People with Severe ME,
21 Church Street, Troon, Ayrshire, KA10 6HT
NOTES AND REFERENCES:
 Department of Health (2002): Report of the CFS/ME Working Group: Report to the Chief Medical Officer of an Independent Working Group, London, The Stationery Office: Annex 3: Patient evidence, page 3.
 The effectiveness of interventions used in the treatment/management of chronic fatigue syndrome and/or myalgic encephalomyelitis in adults and children. Bagnall et al. NHS Centre for Reviews and Dissemination, University of York, September 2002. A later ‘York review’ along the same principles informed the recommendations of the National Institute for Health and Clinical Excellence .
 Severely Affected ME (Myalgic Encephalomyelitis) analysis report on questionnaire; 25% ME Group, 2004.
 From ME has taken over my daughter’s life http://news.bbc.co.uk/1/hi/health/1234297.stm March 2001.
 There are webpages and a website dedicated to Sophia’s memory. Presented with the approval of Sophia’s mother, Criona Wilson, the information in this press release is taken from http://www.investinme.org/Article-050%20Sophia%20Wilson%2001.htm and http://www.sophiaandme.org.uk/summary.html
 The inquest into Sophia Mirza’s death was held in Brighton Coroners Court on the 13th of June 2006. The immediate cause of her death was found to be acute renal failure, consistent with dehydration. Autopsy results on Sophia‘s spinal cord showed: … unequivocal inflammatory changes affecting the special nerve cell collections (dorsal root ganglia) that are the gateways (or station) for all sensations going to brain through spinal cord. Report of inquest http://www.sophiaandme.org.uk/sophia%20&%20m.e.%20her%20story.html
Despite the best efforts of Sophia’s mother to obtain justice for her daughter, none of the professionals involved in Sophia’s ‘care’ have received even the mildest of official rebukes.
 Press release from 25% ME Group to mark Sophia’s Inquest 15th June 2006. http://www.25megroup.org/
 The ‘FINE’ – Fatigue Intervention by Nurses Evaluation’ - trail was intended to apply to severely affected patients, with nurse visits to the home. It reported last year. Findings were underwhelming - at best. Very small numbers of ‘improved’ patients and no significant differences between the ‘FINE’ intervention and comparison group (who had received ‘GP treatment as usual’) at the primary outcome point. There is no mention whatsoever of this in the Lancet PACE publication.
REF: Nurse led, home based self help treatment for patients in primary care with chronic fatigue syndrome: randomized controlled trial. AJ Wearden, C Dowrick C Chew-Graham, RP Bentall, RK Morris, S Peters, L Riste, G Richardson, K Lovell, G Dunn, BMJ 2010; 340; c1777.
 Further details available on request via the 25% ME Group.
 Management, Treatments and the Latest Advances in Research into ME/CFS, CPD Accredited Conference held in London on May 24th 2010. DVD of conference proceedings, including the Q & A session referred to here, available from http://www.investinme.org/ Abstracts of conference presentations available to download at the website. This year’s conference will take place in London on Friday 20th May. Registration is open now. Journalists may register to attend.
 Dr Cheney is Medical Director of the Cheney Clinic in Asheville, North Carolina, which is ‘devoted entirely to the diagnosis and management of CFS.’ “For more than 25 years, Dr Cheney has been a pioneering clinical researcher in the field of ME/CFS and has been an internationally recognised authority on the subject of ME/CFS.” [The Journal of Invest in ME, Volume 4, Issue 1, 2010. Available to download at the Invest in ME website http://www.investinme.org/ ] Back in 1993 Dr Cheney provided this testimony to the US Federal Drug Administration Scientific Advisory Committee:
We have carefully evaluated in the three years of our existence over 1,200 cases…. We have seen the worst and the best of the range of scenarios that can befall a patient with this disorder. At best, it is a prolonged post-viral syndrome with a slow recovery or improvement over one to five years. At worst it is a nightmare of increasing disability with both physical and neurocognitive components. … The boundaries of this disorder are certainly vague but that is true of many other distinctive clinical entities. This disorder is a socio-economic as well as medical catastrophe that will not end. I believe that government and university clinicians have spent too little time or thought too narrowly about these patients. This disease is too complex to rely on standard medical orthodoxy to explain it. When in doubt listen to a thousand patients with an open mind. Failing that, then listen to those who have spent countless hours with a thousand patients. Most of us have some wisdom to impart and most of that came from patients.