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Personal Response to the

Report of the Working Group on CFS/ME

I was in complete turmoil in trying to decide whether to sign up to the Report of the Working Group on CFS/ME when I received the final draft of the document in November 2001 (I did not leave in September 2001 as it says in the Appendix of the report).

I was originally a member of the reference group but in 1999 I started representing Simon Lawrence of the 25% Group on the Key group because he was unable to make the journey from Glasgow. I became a member for the Key Group in my own right when Jonathan Hull left the group in November 1999. I conscientiously worked long and hard, and took my position as patient representative on the Key Group very seriously over the past 2 years. I fought hard for the plight of all sufferers, in particular those through which I have personal experience ie. being a female who is a severe sufferer and has been ill since the age of 10. As well as being extremely vocal in the meetings, after each draft of the document was received I sent back between 5 and 8 pages of comments and recommendations.

There is a lot of good in the report but also many problems. BRAME feels that the report is a step forward, but sees it as being the beginning of the process and not the conclusion. We must remember that the remit of the report was only to look at treatment and management, and perhaps the faults of the report lie here, in that how can you begin to look at treatment until you have begun looking at causation.

The best points of the report are that it recognises:

  • ME and CFS are real and debilitating illnesses which despite uncertain aetiology can no longer be dismissed as "all in the mind" or because they "do not believe" by the medical profession and society in general.

  • the need for an early diagnosis, within six months, and that the patient should be a partner in their treatment process, they should be listened to, and that the treatment plan should be tailored to the individual patient.

  • there is no cure, neither is there a treatment available which will be helpful for everyone, and more importantly that there is a lack of research into all aspects of these illnesses.

  • the severely affected are a forgotten part of our society and the medical profession does not have the resources to deal with them.

  • the impact of the illness on the patient, carer and the family, and the problems faced with benefits, education and employment – a resulting benefits paper on ME/CFS was handed in to the CMO.

  • The need for education and training of healthcare and medical professionals as well as society in general.

  • The rights of the child to be heard and that children can no longer be simply taken from their parents.

There were also negatives in the report:

  • Ignores patient evidence by recommending that GET and CBT are the "most promising treatments" available at present. AFME’s questionnaire figures which were included in the report, showed that 66% were harmed or not helped by GET and 93% were harmed or not helped by CBT. The other groups’ (eg. 25% Group and MEA) figures were similarly representative and in total they covered approximately 4,000 patients. I am concerned that GET and CBT will be used as treatment regimes when setting up new clinics.

  • The majority of the treatment of symptoms section has been moved into the on-line annexes, this is the section which would have been of the most help to patients and their GPs, in fact most of the report is not particularly GP friendly.

  • Emphasises the psychiatric point of view with the inclusion of Illness Beliefs ie. if you believe that you have a physical illness you won’t get better!

  • The Children’s and Young Person’s section still has a psychiatric bias.

  • Lack of definition as shown by the WHO classification about ME (neurological) and CFS (psychological) which leads to many of the problems which we as sufferers face and the inclusion of which I fought for.

I am hoping that the report will result in/money being provided for:

  • widespread education and understanding of ME and CFS as real and debilitating illnesses and the major impact this has on the lives of these individuals, their carers and family as well as particular understanding for the severely affected and children/young people and improved access to appropriate services.

  • thorough medical research into cause and appropriate treatment and an epidemiological study.

  • Appropriate training pre and post graduate for medical professionals, health care and social welfare workers.

  • patients no longer being forced into treatment regimes which are detrimental to their health and that if they start a treatment and this occurs then it will be stopped before more damage is incurred.

  • a reduction in the problems faced with education, employment and when claiming benefits.

After much soul-searching I finally decided that I could not sign up to the report. I was not on the panel as myself or BRAME, but as a patient representative, therefore any decision I made had to be in the best interests of my fellow patients. I felt that considering the remit of this report was treatment and management, I could not condone the recommendation of Graded Exercise Treatment and Cognitive Behaviour Therapy being advocated as the most promising treatments for sufferers, especially as it went against evidence presented to the group of thousands of patients who have been harmed or not helped by these treatments. I especially could not condone these treatments being used for the severely affected and children/young people, no matter how adapted these treatments are. I also did not like the resonance throughout of illness beliefs, although these were reduced following my persistence on the subject.

I have made known throughout the time I have been a member of the process that whilst, like many treatments for this illness, Graded Exercise Treatment and Cognitive Behaviour Therapy may help some sufferers, that for the majority they have found the treatments to be harmful or not helpful. I therefore felt that I could not agree to the proposition of GET and CBT being the most promising treatments knowing the damage they do. My concern is that GPs and Local Health Authorities will look to this report for guidance for treatments and when setting up new clinics.

I understand that the report has had to take the middle ground with two completely differing views, but as a long-term severe sufferer of ME for the past 16 years, I also understand the patient experience and the ramifications of recommending CBT and GET for patients, and the inference of illness beliefs. I would have been happier if the report had recommended symptom control as the main treatment at present, along with pacing, more of an emphasis on the patients being involved in self management as discussed in the meetings, and that CBT and GET have proven helpful to some ambulatory patients under research conditions and research criteria. I feel that if these changes had been made and that illness beliefs were removed from the document, I would have been for the most part happy with the report and would have felt able to sign up.

ME/CFS is still a complex and debilitating illness which is affecting hundreds of thousands of people in the UK and hopefully this report will be the first of many on ME/CFS and will be effective in prompting appropriate medical research to find the organic causation of the illness and to help understand the very nature of the illness as it affects the many body systems. Even for those of us who have been so severely affected for so many years we still live in hope of doctors and medical research finding an answer to this illness so that we can all have an improved quality of life, where we may be free of pain and symptoms once again.

The producers of the report tried very hard to bring together the views of the cross-section of the community and knew that, even though there were strong and healthy debates, that there would never be agreement on many of the issues. The major step forward was the inclusion of the views and evidence of the patients themselves, if this had not happened I think that we would have seen a much poorer document. We are grateful to the CMO for giving the patients a voice

I am delighted that the CMO is acknowledging ME as a real and chronic illness and that patients have not had the same service provision as other chronic illnesses. I would like to thank the CMO for allowing me to be part of the process and for all the attention that has been made to, and the inclusion of, my comments. I would especially like to thank the writers for the amount of the document that has been given to the severely affected, and apart from the recommendation that they be given GET and CBT, am very happy with these sections, and feel it is a huge step forward for this large section of the ME community to finally get the attention they so need.

Tanya Harrison

Chairperson BRAME

February 2002


You can read the CMO Report of the CFS/ME Working Group by clicking on this link: CMO CFS/ME Report

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