An open letter to the CMO
This is the text of a letter sent to the UK Government's Chief Medical Officer (CMO) in March this year, by the mother of a severe ME sufferer.
Dear Prof. Donaldson,
I have written many, many letters in my attempt to obtain justice and recognition for ME sufferers and am writing this open letter in the hope that a wide circulation of the contents will illustrate the real problems that are being successfully hidden from public understanding.
It is with great regret that I am forced to acknowledge that the severely affected ME sufferer is still being continuously ignored by the vast majority of people in the UK. I had hoped that the setting up of your Working Group on ME would, at long last, provide a forum for hitherto untold case histories to be considered and acted upon. This does not appear to be the case and I am even having problems contacting members the Working Group who were co-opted after the first announcement of its membership - some of whom are taking a very prominent role in its proceedings.
Recent papers produced by Dr. E. G. Dowsett, Dr. J. Richardson and Dr. D, Pheby circulated to members of the APPC on ME illustrate my concerns. Dr. Dowsett conclusion of 'The Epidemiology of ME in the UK 1919- 1999' states:
(1) ME is a physical illness distinguished by its encephalitic features, its unique neuroendocrine profile and dose epidemiological similarity to poliomyelitis- It has the potential to cause serious long term disability in the most economically and socially active members of society.
(2) Research into the cause, diagnosis, prevention and management of the illness is seriously under funded and the late chronic phase is almost devoid of attention.
(3) In the absence of an early government sponsored epidemiological survey (including patients in the community who do not present to medical clinics) it will be impossible to plan or cost suitable management strategies.'
Dr. Pheby's 'Proposal for a Research Study of the Epidemiology CFS/ME' is heading in the right direction but he also states "It is unlikely that all the epidemiological questions arising in respect of ME can be answered by a single study. In particular, a possible area of concern is the possible underrepresentation in the sample of the seriously ill, housebound patients who may not he known to their GPs".
At this present time the chronic ME sufferer who experiences no remission but continues to relentlessly deteriorate seems to he completely ignored by everyone. The medical profession does not want to know, telling sufferers and carers "there is nothing we can do - it is your problem". There is also little or no help or support from Social Services, with benefits regularly being refused by the Benefit Agency resulting in months, stretching into years, spent appealing and going to tribunals just to obtain basic provision
Even the national support groups are more interested in CFS sufferers than the chronic ME sufferer because they are easier to help. I have actually been told that it is the government's responsibility to support the severely affected sufferer by one organisation which said it did not have the resources to help people like my daughter, even though we were at that time one of their "supporters"!.
The recent clamour for the setting-up of clinics that offer CBT/GEP type help is indicative of the support proposed for the CFS sufferer - those types of treatment regimes however, are proven to he extremely harmful to ME sufferers, exacerbating their condition and accelerating their deterioration (we know this from personal experience). We hope that the differences between the illnesses ME and CFS will be well documented in the findings of the final Report of the Working Group, for if this is not done medical professionals will be left seriously vulnerable to law suits in respect of inappropriate treatment, as defined by Simon Molesworth AM, QC, BA, FEIA, FAICD at the Sydney Conference in February 1999.
In my opinion the crux of the matter is the erroneous inclusion of ME under the umbrella term of CFS. it is imperative that we return to Melvin Ramsay's Clinical Identity of ME and accept the alarming tendency of ME to become chronic.
The recently published research paper "Denigration by Design" clearly illustrates the harm that the psychiatric lobby has done to the ME cause, as did the excellent Newsround and Panorama progammes last year. The Countess of Mar also brought the predicament of ME sufferers to the attention of the House of Lords as recently as 16th February (see Hansard Vol. 609 No- 41) urging Ministers to recognise their plight. Now is the time for the CMO's Working Group and the APPG [All party Parliamentary Group] on ME to work together and acknowledge the problem of the chronic ME sufferer by putting in place an epidemiological survey, relevant research and support for this much-maligned group of severely-ill individuals.
We have struggled alone, and against great prejudice, for the last 11 years. Our daughter continues to deteriorate and yet we get no help from any official quarter despite impassioned appeals for assistance. No-one wants to know about our problems and, even worse, no-one (apart from our few true friends) even seems to care. If my daughter had a different illness and was not labeled with the illness ME/CFS, I am sure the support available would be vastly superior, whereas she is now unacceptably treated with scorn and ridicule in spite of the fact that she is severely ill and relentlessly deteriorating.
The future has nightmare proportions for us - what happens to our daughter when we can no longer care for her? We cannot get help and support now but when we are no longer able to fight for her needs what will happen to our intelligent caring, fun-loving daughter who has an insp iring (and essential) sense of humour in spite of all her pain, disability and the injustices she has to bear? She is imprisoned by a body that will not function and all we ask is that the present abuse and neglect of the severely affected ME sufferer cea ses and that people with ME should be able to obtain justice and true recognition.
Yours in desperation