Sample letters Jan - June 2002 from RiME (printed in Kickback 43)
Being bed bound with M.E makes it very difficult to have a "voice" so friends and family have signed this petition.
1 have lost 10 years of a young life to M.E. and am writing to urge the government to invest some urgently needed money into the underlying physical causes of M.E.
We need special provision for the severely affected -domiciliary visits are our only option. It can be very isolating trying to cope with this devastating illness for patients and their families.
We cannot and do not deserve to be ignored or forgotten.
As a severe M.E sufferer I am often frustrated by how little I can actively do towards mine & other sufferers plights
1 am extremely pleased to be able to enclose at least a page full of signatures - every bit counts in these circumstances,...
Despite all the controversy regarding it, I believe that the purpose of the petition is absolutely correct & right & 1 am extremely grateful for the stance that RiME has taken. The response regarding it, from AfME, the MEA & others has been unforgivable, Thank you again for your efforts, I hope the petition is a success & that the sufferers & supporters of (dare 1 say it) genuine M.E. can take a step forward.
Councilor F.E. Staffs
1 am concerned about the state of medical research into M.E. You may be aware that the Chief Medical Officers Working Group on ME published it's report in January, and in response to this report the Medical Research Council (MRC) has been asked to "develop a strategy for advancing biomedical and health services research on CFS/ME."
ME is a neurological illness, and is classified as such by the World Health Organisation, A substantial body of biomedical research (mostly carried out in the U.S.) Has demonstrated physical abnormalities in both the Central Nervous System and the Musculoskeletal, Cardiovascular, Immune and Endocrine systems.
A small number of studies have been earned out in the U.K., but in a piecemeal fashion and funded on a shoestring solely by charities and private donations It is utterly unrealistic to expect that small charities can find the sums of money required for serious research
Despite this, the DOH has funded nothing other than psychological psychiatric research into this illness This is utterly inappropriate, as shown by the facts that despite millions of pounds of backing (mostly via the Linbury Trust), this approach has failed to advance knowledge of the cause and effective treatment of M.E On the contrary, it has done nothing other than falsely portray M.E. patients as suffering from a psychiatric disorder. This has resulted in inappropriate and harmful treatment, and denial of basic social security benefits. This has lead to great distress and unnecessary suffering for many patients already struggling under the terrible burden of illness
This shameful situation should not be allowed to continue. M.E. is not a mental health issue, and it is therefore imperative that research into the biological causes of, and treatment for, M.E. is undertaken, and that psychological / psychiatric research should not be considered, by the MRC
1 ask you to request an assurance from Professor Sir George Radda, Chief Executive of the MRC, that this will be done
1 signed your petition in my local library I am pleased to see that somebody is trying to do something with regards to a cure. I have had ME for over 11 years. I was once a member of AfME but decided it was not worth paying the subscriptions to receive nothing more than a newsletter which contained speculative information, requests for funding, and no hope of a cure. I have actually coped better on my own with the support of good friends. With every good wish for a successful campaign.
Thank you for the RiME Petition I whole heartedly agree with the wording. The Government must put 'ring-fenced' money into the aetiology of M.E. I don't want psychiatrists involved in this process and nor does anyone else I know with M.E. If problems such as depression co-exist with M.E. then patients have the opportunity to go to GPs/ Consultants and get help. Further interference by psychiatrists into research would continue to muddy the waters and prolong unnecessary debate on behavioural modes of treatment. We must have action now.
I find the response of the M.E Charities and IMEGA to your Petition unforgivable and I believe they will pay the penalty of their indiscretion through loss of membership Their comments are impertinent and it is not for them to tell grass-root people with M.E, what they should and shouldn't do. Shame on them.
Your Petition is timely. We need to shift the agenda back on to 'physical research' and away from the sort of nonsense which appeared in the CMO report on CFS/ME - boy do I dislike that term. This report is what everyone knew it would be: an almighty mess. Until the scientists separate ME. (the pattern of symptoms defined by Ramsay/ Dowsett) out from 'CFS', we will get nowhere: just more unhelpful debate on CBT style of management. Does it help people with M.E ? No, it doesn't. Crucial evidence supplied by ForT and the 25% Group was, of course, ignored. These are organisations which do represent patients with M.E. and the harm that GE/CBT programs have done to their members is well documented.
Did you hear C C. Director of AfME speaking on radio 5, Jan. 11 ? He said that most people with M.E. can expect to make a very good recovery. Unbelievable. This illustrates why organisations like AfME are currently working with SW and his cronies. M.E. is something which comes and goes and they can help to accelerate the process through CBT, gardening, poems... When are they going to wake up and listen to people with M.E ? Oh but then, they don't want to represent the latter. They have a vested interest in keeping names and case definitions grey.
1 am disturbed by the level of access AfME gets re. APPG on M.E.
Dear Mr. Davis,
1 have been ill for 12 years, am house-bound and bed-bound. I just wanted to say that I. do not know many people and my family do not live here. I am very isolated and very alone. I cannot write a long letter, but Thank You for the very wonderful work you have taken upon yourself.
I'd like to commend you for taking the initiative to introduce the RiME Petition as 1 truly believe most people with M.E. do not want research monies to be centered on psychiatric models of treatment.
Over the last decade the lion's share of research funding amounting to millions of pounds from various sources, mainly the Linbury Trust, has been given to psychiatry.
Given this virtual monopoly on research funding and the substantial amounts of monies poured into CBT and Graded Exercise, psychiatry has failed miserably to move us forward in our knowledge of M.E. It would therefore seem it has been sheer folly, a waste of a decade, and a waste of much sought after research funding to have concentrated on psychiatric models of treatment in the past. This surely vindicates the strong feelings of M.E. sufferers towards long awaited research money being spent, yet. again, on more of the same.
In addition, 1 can see no logical reason for psychiatrists to be involved in research into ME quite simply because they don't seem to believe in it's existence. It is common knowledge Psychiatry is researching a heterogeneous condition C.F.S, or as psychiatrists sometimes call it Chronic Fatigue, Fatigue Syndrome, Neurasthenia, with research participants being selected from " Fatigue Clinics."
Professor S W. confirms this in the Lancet in 1993, " Neurasthenia would readily suffice for ME ... and disgracefully this is exactly what has happened in the WHO Guide to Mental Health in Primary Care CFS / M.E. has been included within the Guide's covers under the incorrect classification of Neurasthenia, F48.0. Mental, Behavioural & Neurotic disorders and the English CMO, Professor L.D has declined to attempt to have this misinformation corrected
The honest and scientific approach to this problem would be for psychiatrists to apply for research funding for the disorder they believe they are researching Neurasthenia / chronic tiredness as classified by the World Health Organization as F48.0, and leave M.E. research funding for those who believe in it's existence.
I live in hope that the M R.C. will recognize the desperate need for research into strictly defined ME with participants fulfilling Melvin Ramsay's description of M.E. I would also ask the MRC to give due consideration as to why CBT & Graded Exercise research should even be considered for the condition ( M.E. ) which has a high percentage of sufferers with the unusual symptom of alcohol intolerance, I will continue to collect signatures for the RiME petition until the very last day. Thanks for listening and best of luck with the Petition
ME & MY PURE HELL
Before March 1994 I was fit and healthy and employed as a Head of Year and PE / Maths teacher who led a full and active sports life. On 8th March 1994 I suffered a strange debilitating virus which eventually became so bad I was unable to work, (incidentally, there was a cluster of cases of M.E, affecting to varying degrees, a number of pupils at the school.) I paid for tests to be undertaken privately and these proved that I was suffering from Post Viral Syndrome, following Glandular fever. The NHS solution was that nothing could be done but it probably go within two years, which I refused to accept and set out to find the solutions privately.
During the following three years I deteriorated until in 1997 I was reduced to crawling to the toilet, being carried downstairs and spending the day lying as still as possible due to severe agonizing headaches. In addition 1 suffered from terrible weakness, muscle aches, severe dizziness, blurred vision, sore throats, sweating and shivering, swollen glands, highly light and noise sensitive and digestive problems. I was barely able to sit up to eat, unable to watch TV or even converse for more than about 5 minutes,...
Every day, seems like eternity, spent enduring pain, feeling so ill, like your blood has been poisoned, with the frustration of being trapped inside a useless body, unable to concentrate and needing assistance to do the most basic tasks. For a couple of months I suffered the humiliation of being unable to feed myself. Whilst I am able to do this now I still need help to get to the toilet, to wash and dress etc. it is like the seasickness adage. First you feel so ill that you are afraid your going to die and then it gets worse and you are afraid you are not going to die. I and most other sufferers, adopt a determined, positive and proactive attitude, which no doubt contributed to ME in the first place. Merely surviving these eight years of hell has been a far greater achievement than any of my academic qualifications, sporting achievements or job promotions.
Over eight years I have spent thousands of pounds, in vain, seeking a solution from many sources including ME Consultants, Acupuncture, Osteopathy, Homeopathy, Herbal medicine, Nutritional therapy, Kineseology, Hypnotherapy, various healers, very many nutritional supplements. Immunogiobin, B12 and magnesium injections with little or no help from the NHS
Governments, researchers and fundraisers need to realize that it's not just about saving lives but quality of life and that with severe ME this is zero. Society would not let animals go through such suffering and incapacity but ME sufferers are left to exist in a "living death" state for years sustained only by the distant ray of hope of recovery and a positive attitude that keeps you fighting and thinking that it's got to get better soon even after 8 years of disappointments.
Insult is added to injury by the fact that some people still believe a bit of graded exercise and some positive thinking is all that stops sufferers getting well. I used these methods to recover from an accident when 1 received 25% bums but with ME this results in deterioration rather than increasing my capacity If only that was the answer I'd never be in this hell I'd have been well years ago enjoying a wonderful life that 1 had before ME.
It is a disgrace that there is no government funding research into aetiology of ME, (the only fundmg is provided through charities and donations, for an illness, which affects an increasing number of people of all ages, usually the very active) I urge you to ensure that this criminal neglect is ended now with desperately needed funded research into Neurology, Immunology, and other areas of dysfunction Severely affected sufferers must be included in any study, not just those well enough to attend the trials.
How come AiME didn't have information on RIME in Interaction??
I am very delighted that you have mounted this petition, research is well overdue, and thank goodness you have asked to exclude psychiatry (which is a nonsense as far as ME goes.)
If a person is suspected of having heart trouble, they would be referred to a cardiologist not a psychiatrist, PWME in turn, need to see physiologists, people trained in the discipline of ME. If you have any other information about your organization I should be glad to have it, and support anything you are doing.
Thank you for the petition.
I fully endorse the wording. When first ill, after two and a half years in bed, I spent six and a half months in a psychiatric ward - the only help they offered on the NHS, I did graduated exercise and CBT, It did not cure me, I am still badly disabled with ME after 12 years and use a wheelchair,
I don't understand why the ME charities don't support the petition?
Also why T.W. won't let RiME speak to the APPG on M.E.
Over 13 years ago my brother contracted an unknown illness rendering him bed bound and hospitalised at the age of 18. In hospital he underwent tests and was put on a program of graded exercise which left him flat out, bedridden, hardly able to speak or feed himself and unbelievably in the geriatric ward, a totally unsatisfactory and inhumane treatment,
My parents took him out of hospital and have cared for him at home, trying to understand this illness. Until 18 months ago he had made progress and had reached a level where for short periods of time he could watch TV, use the Internet and get around the house in a motorised wheelchair. But after trying to get better to everyone's disbelief he deteriorated to a condition even worse than before.
He is now lying in bed in a darkened room, again unable to stand light and sound, unable to sit up in bed or even roll over. He can only move his forearms and speak for extremely short periods of time. He is being cared for, spoon fed and toileted by my parents and has absolutely no quality of life. This leaves my parents with a life of hard work and stress beyond belief and no rest.
I believe the only way forward with this illness is for the medical research council to fund proper research as stated on the petition. Everyone is entitled to some quality of life,
I am writing in great despair. 1 have been a M.E sufferer (Myalgic Encephalomyelitis) now for 14 years. I have had this since the age of 16, I am now 30 and have had my life ruined and taken away by this very misunderstood illness. I live day to day trying to cope with an array of symptoms and as there are no doctors who really know how to help or even all the symptoms you can suffer from apart from fatigue, we are truly alone.
1 know there are many people worse off than myself, but that does not give the Government the right to make no effort in funding any sort of medical research, to find a cure for M.E sufferers and for us to be treated like second class malingerers by the doctors We all need help to find a cure for this covered up illness now. Why should we have to suffer in silence alone'1'
Many M.E. sufferers have taken their own lives through sheer despair and I have the lost a wonderful friend to this and do not want to lose any more before you realise how awful this illness is. I suffer from breathing difficulties, heart irregularities, confusion, pain, muscle weakness, head pain, swollen lymph nodes, fevers, sickness, dizziness, fatigue, severe unreality, shaking, have to use a wheelchair when I'm out and am pretty much housebound, This is some of the symptoms I suffer I want medical funding for research. It is my right and I want it before the next 15 years of my life are ruined
Thank you for the petition.
I agree with the wording, 1 don't want graded exercise / CBT... I've spent hundreds on alternative therapies - I'm still very ill. 1 want someone to find out what's going wrong with my body, it's as simple as that!
I don't have any faith in the ME Charities (MEA or AfME ) or the local group The latter has a NIMBY-type attitude = "l Don't want severely affected in our backyard." It seems, largely, about social outings -Pub lunches, boat trips, picnics...what use is this if you can't get past your front door? I wonder if some of these people have ME.
I enclose two lots of signatures, am getting more and will do what I can to help. JW.
P.S. I've just heard T.W has denied RiME access to the APPG on ME. It really upsets me, I want politicians to know what RiME is about. He should be doing all he can to help. It is unfair and discriminatory If the ME Charities get access why don't we ?
Dr. X.Y. Avon
Research into the abnormal physiology of severe ME is badly needed.
If the expertise is available in this country to hone athletes to the peak of physical performance, is it possible for the same knowledge to be applied to the causation / prolongation of ME symptoms?
Severe ME is not cured by cognitive behavioural therapy anymore than a severe type 1 diabetic would be, who is in need of insulin.
The experience of severe ME wtih it's neurological symptoms is a very different experience from mild fatigue syndromes which may show improvement with management strategies.
We badly need bed bound / housebound patients to be evaluated to discover the difference in blood profiles between "good" and "bad" days. The key to the problem could lie here, in what may be a metabolic disorder with a genetic predisposition. Because of it's fluctuating nature this must be a potentially reversible illness.
Please help us to feel valued by taking our concerns seriously. Having myself waited patiently for 20 years I feel the time has come for action.
It took many years of doubt, suspicion,, and derision before Myalgic Encephalomyelitis was recognised by Government and some of the medicac profession as a genuine illness. During this period sufferers were belittled, embarrassed and even humiliated by TV presenters and many psychiatrists:
Gradually more and more doctors have come to accept ME and sufferers have become less likely to be labelled malingerers or depressives. Having reached this more comfortable state I am at a loss to understand why the MEA and AfME are bowing to those who still fail to understand the nature of this illness by using the label ME/CFS. This is a short step to dropping ME and then we will be back where we started. I had apparently misunderstood the purpose of these two organisations I thought they were set up to help and support people suffering from ME
Soon we will be known as "those people who are always tired" and that could easily be misconstrued as malingering. Perhaps Myalgic Encephalomyelitis is not a perfect definition but it is the nearest to date, which describes the signs and symptoms of the people who suffer from this disease, I have never seen it documented that CFS patients are subject to muscle pain, sensitivity to noise, nausea, dizziness, severe "flu-like" malaise, exhaustion which is unrelieved by sleep, nightmares, and many other things.
This downward slide must be halted. Why are we on it anyway? Who are we trying to please and at what cost?
Dr.J G. Bristol
The exclusion clause, " ... but with the exception of psychiatry . " in your petition, appealing for a co-ordinated research progamme into the aetiology (underlying causes) ofME. begs the question why psychiatrists should be involved in the treatment of people with M E , unless they have a history of, or a concomitant, psychiatric illness. It is understandable that people with M.E. are fed up with the loss of career (or interruption of education in children), reduced standard of living, social isolation and fractured relationships, sometimes compounded by disbelief & derision, on top of the discomfort of the illness, but this is not the same experience as clinical depression, which is not thus explicable.
Of course, some people with M.E. may have depression, or some other psychiatric illness, but the one is not a prerequisite for the other.
Since M.E is classified as a neurological, not a psychiatric or mental illness, it may, at first, appear hard to see why psychiatry has taken such a dominant role in research and treatment,
A significant reason for this may be the influence of the report from the Royal colleges of Physicians, Psychiatrists and General Practitioners in 1996, since when Chrome Fatigue Syndrome has been widely thought of as the official name. Why CFS should be the preferred term has never been made clear by those who said it should be so
Chronic Fatigue Syndrome is an umbrella term, under which a number of illnesses, in which chronic fatigue is but one symptom, are contained, ME. is much more than mere tiredness The terms are not interchangeable as putting a / between them suggests
Since we are not talking about the Same illness, there ought to be different research strategies and the treatments suggested by findings as suitable for one condition, for example graded exercise or cognitive behavioural therapy, may not be suitable may even be harmful - for the other
Many of us think CFS needs to be "unpacked" (Unhelpful Counsel ? Merge's response to the Chief Medical Officer's Working Group on CF'S/ME), redefined, or abandoned altogether
Thanks for your initiative, from all with M R but in particular on behalf of those who are so severely affected that they remain isolated, invisible, without a voice and, in spite of receiving particular mention in the CMO's Report, are still neglected
Councillor R.I. Sussex
Dear RiME, I return your Petition with a few signatures
As a social worker, I have met several people with this illness, I was very surprised to hear that the Government is funding no research into its underlying physical causes.
In addition to the human suffering there is the question of cost. ME currently costs the country over £4 Billion pounds per year The state has a duty to investigate. What is behind this much misunderstood illness and enable people to improve / recover so they can resume a useful role in society.
The small sums of money which up to now have been spent on psychiatric models of treatment are not working and are inappropriate, My M.P. wrote to T.W. MP regarding RiME addressing the APPG on ME. 1 5,000 - is a lot of signatures and it is important that organisations with differing views to the national Charities are allowed to speak. The M.E. Charities clearly represent a small minority of people with M.E
I was disappointed with T.W's response. His letter was somewhat sarcastic and played the party politics card. ME is surely bigger than all this.
I welcome your efforts and I hope you achieve the prominence you deserve.
I applaud your proposal for funding into the aetiology of ME.
My own son became ill after receiving an MR catch-up vaccination at the end of 1994. He struggled through his GCSE's but was unable to continue his sixth form studies and has been home for nearly three years with ME.
The GP Practice should be a gateway to excellent health treatment but is often a hurdle to be overcome, Our own GP did not consider ME a diagnosable disease and thought the illness was all in his head. We were referred for CBT but the therapist was of the same opinion as our GP. This situation is adequately described in the Chief Medical Officer's Working Group Report on page 23,
" Difficulties also arise when the therapist and patient share differing beliefs..."
This treatment has been the only one offered by our GP and was not successful. Subsequently our GP practice has largely ignored us. Hence, we have been to a number of alternative medicine practitioners for support at personal expense. None have provided a cure and my son continues to languish at home with little foreseeable future. I believe there are a large number of young people in a similar position. While we are fortunate in being able to support our son, this is not true of everyone and eventually he will be left alone to fend for himself. Most probably becoming a burden to the taxpayer for support.
Hence funding for a cure for ME is as important as for AIDS and would be a worthwhile investment, not only to give back to many the lives they deserve but also to prevent large amounts of funds being required to support this group later in life.
I entirely agree with your petition and have signed it without hesitation as have family and friends. It is a shame projects such as yours are not supported by the main groups and do not get the recognition they deserve by the medical world and Government.
I was Chair of an overseas Charity for twenty years. One thing I noticed was with the right support small groups are often more efficient. By the time the larger organisations have gone to their committees, had their meetings and decided what to do, the small groups have already decided, done it and are preparing their next project. One day someone will recognise this and you will get the support and recognition you deserve.
Thanks for the Petition. I totally agree with the wording. The ME Charities were predictably arrogant and self-righteous in their response. I am told that signatures are over 14,000 - more people will probably sign than subscribe to MEA / AfME. People like T W M,P. must take notice.
I feel I should be writing about research but feel obliged to raise the issue of access to Parliament 1 no longer have any confidence in the MEA or AfME and feel they are misrepresenting my needs and views at Westminster e.g. the CMO Report. It's coverage at Westminster has been far too favourable with the exception of lady Mar's excellent speech: (she criticised the Report and the ME Charities role in it: "they have capitulated .."). Hear, hear.
Why do PWME (well, the ones I know) find the latest Report so disappointing? Primarily because it once again fudges ME with 'CFS' The sorts of treatment outlined in the Report - GE / CBT .,. may help people with 'CFS' but not the vast majority with ME and certainly not the severely affected
The Charities have never got to grips with this pivotal issue e.g. an article on campaigning in Interaction (34) by the Chair of Trustees never even mentioned nomenclature and epidemiology. Unbelievable. AfME, of course, have a vested interest in keeping boundaries grey. If they lost members with 'CFS', 'CF'.., their membership would drop dramatically.
AfME has recently sent cards to Groups: the idea is that people send them to their local Health Authority with the aim of getting better services for people with 'ME/CFS' My local authority says that ME is a type of Chronic Fatigue and can be treated via GE / CBT... The project might well lead, therefore, to more GE / CBT Worse than useless.
The role that some Groups play adds to the confusion. Some seem to be run, to varying degrees, by persons who don't have ME or don't understand what ME is One Group in London advertises music and art classes, trips to galleries.. Not much use if you can't get out of bed-??
Returning to the issue of access to parliament, I've just heard that T.W, is not letting RiME address the APPG, It's too bad. I will be taking the matter up with my M.P.
Analogies are being made now re. ME activists and the Suffragettes. The latter were, of course, snubbed, ridiculed, denied access to parliament They would not be appeased or go away. Neither will we, Underestimate us at your peril. We will prevail.
I have tried my best to defend the RiME project from attacks from AfME. As you will probably know they accused people supporting the RiME initiative of stigmatising mental illness but at every opportunity I have been pointing out that the only way to accurately treat people is by a method of differential diagnosis, recognising the differences between patient sub groups and providing research specific to these groups - the main one being the group of people who have clinically defined Myalgic Encephalomyelitis...
From what I hear RiME has topped the ForT total already which is excellent news. It means that total numbers have outstripped the membership figures for Action for ME and I'll be very interested to see how AfME and the MEA react when the Petition is published and delivered,
Thank you for giving me the opportunity to sign your petition.
When I contracted ME, I was a young student. Doctors were unable to diagnose or treat the illness but they: maintained a professional interest, gave me (The patient) the benefit of the doubt, and were interested in learning more about ME.
The power and influence of the psychiatric lobby changed all this In recent times, I have either been treated as a psychiatric case who needs to be humoured or a difficult case that dues not fit into any medical category and which can be ignored,
I have been put on Graded exercise and CBT Programs which have led to a deterioration in my health,
Psychiatric bias and manipulation of the facts has adversely-affected the way that I and others are treated by GP's, Consultants, employers and family, even.
I hope the RiME petition helps to change the direction of ME Research. Funding needs to shift from psychiatric / psychological projects i.e. those featured in the Linbury trust booklet to ones to do with the underlying physical causes of ME. I want to see resources centred on finding a cure for this devastating neurological illness. And I hope this happens in my lifetime.
I am very disappointed to hear that T.W, (Chair of APPG on ME) is not allowing RiME to address the APPG if he won't help us, who will?
My grandson became ill eleven years ago at the tender age of 19 whilst working happily as a council joiner. I am extremely pleased with what the RiME Petition is doing. My grandson was assessed by a prominent psychologist in Glasgow who felt my grandson's problems were of physical origins. We really need to look at the other side of the coin now, psychiatry has had its turn of receiving all the money.