| We hope to effect a positive and informed change in the way sufferers are treated here in the UK in the coming years. The aim of this organisation is to share news, views, research and any interesting information about the issues that will affect sufferers. Pooling our knowledge, views and individual skills, I envisaged that our collective talents will help us all be a part of that change. With our discussion forum and this web site we are hoping to raise awareness and provide help to those who are searching for some answers... We are trying to add to the hope that one day, Myalgic Encephalomyelitis will be correctly recognised as a distinct neurological disease and disability in its own right by our Department of Health and that patients will be treated with due care, urgency, respect and understanding by the National Health Service. Sadly for many of us and especially those most severely affecteed it has become pretty obvious that our NHS has become dysfunctional and unable to act on any new and evolving illness or disease. We also hope to establish the urgent need for access to a comprehensive set of diagnostic tools to allow clinical specialists such as Neurologists to comprehensively assess the many ongoing physiological abnormalities that are already being documented in published studies worldwide. With great regret it has been observed that the work of the UK Government Working Party has consistently failed to address the many issues of direct concern to those who are severely affected. Issues such as clinical research and exploratory investigation (modalities essential to the process of differential diagnosis) were all ignored on the basis of a narrow minded argument that they were irrelevant to methods of best practice treatment. The truth is however that at present there is no effective treatment for those who fail to respond to the psychiatric methods of Cognitive Behavioral Therapy and Graded Activity. It is often said (and I feel justifiably so) that clinical research and exploratory investigation is both essential and vital to rapidly enable the development of effective and focussed treatments for those severely affected; those for which CBT and Graded Exercise is either useless or harmful as documented by patient experience. The contemporary research data that currently exists outside the goldfish bowl of Psychiatry does repeatedly indicate active, underlying and ongoing yet complex neurological, immunological, endocrinological, cardiological a nd other pathologies that perpetuate debility in those severely affected, housebound and bedbound. Between 1998 and 2001 the members of the Government Working Party sat to discuss the issues surrounding ME/CFS. They avoided the issues affecting the severely affected like the plague. Those who represent the severely affected became exhausted from their continuing efforts and of having their concerns ignored, marginalised and rejected. The CMO's Report - published on January 11th 2002, fully supported by both major ME charities will not even give legitimacy to the term Myalgic Encephalomyelitis despite the substantial body of research data collated over the last 30 years. Instead, there are imminent plans drawn up directly as a result of the work of the Government Working Party to amalgamate the established diagnostic definition of ME within a generic and technically meaningless term known as "the chronic fatigue syndrome" to form an umbrella "pseudo" diagnosis of ME/CFS. A heterogeneous patient group is being formed (it is seen) for clinical and political convenience and all the available data collated specifically relating to ME is being ignored in preference to state sponsored studies almost wholly carried out by the psychiatrists Professor Wessely, Dr Michael Sharpe, Dr Peter White et al. In turn these psychiatrists are persuing an agenda to psychologise ME/CFS by labelling ME/CFS a Functional (psycho) Somatic Syndrome (a designer psychiatric illness). There are no promises or plans for clinical, investigative or diagnostic research. In fact, after 3 whole years there seems to be little if any substance at all in what is being proposed aside from platitudes and unscheduled promises to do better in the future. Even the latest proposals from the Medical Research Council have been seen to be grossly inadiquate. The severely affected who mostly have learned to pace themselves and quite often have very positive attitudes to getting on with life are being offered little if anything from the NHS. From my perspective as an NHS paramedical professional, the severely affected are probably being offered the cheapest deal and the barest of minimum in terms of healthcare provision in proportion to the high degree of suffering that most surely exists for thousands. Clinical investigation is being kept to a minimum - only a select number of established pathologies are being investigated before an individual is given the pseudo diagnosis of ME/CFS. Complex tests and investigations are being refused. A General Practicioner is to be assigned as a pseudo specialist for anyone with ME/CFS. Bearing in mind that our average GP in the UK has only 7 minutes to spend with each patient regardless of type or severity of illness and you might begin to see the inequity of the current situation. The truth is that there are thousands of individuals out there, mostly bedbound or housebound, who have developed a total and systemic breakdown in their health. Many have been continually ill for years and decades without recovery. For others there are continual relapses and an inability to work for a living or to participate in social activities. This is not because of any psychiatric causation, this is due to severe pain and suffering. There are studies providing evidence of immune system abnormalities, neurological abnormalities shown on MRI scans, endochrinological abnormalities, cardiac abnormalities, gastrointestinal abnormalities, hepatic abnormalities, damage to blood cells and many other signs including muscle damage detected by creatine metabolites in urine samples. I plan to make details available here on the MEActionUK web site. None of this research is ever mentioned by the "Wessely School" much to the continued annoyance of doctors from other specialties of the medical profession. It is no wonder to me that patients are extremely annoyed and dissatisfied by the profession of Psychiatry and in particular Professor Wessely and his small clique of like minded colleagues worldwide. They most surely have an agenda and they refuse to let anyone change their agenda. For those of you who don't know, severe ME has been readily likened to the suffering of end stage HIV Aids. People with severe ME are left in this lifeless limbo needing high levels of care. Even people with terminal Cancer have been noted to have had a better quality of life due to the many treatment options they are offered - treatments that have been developed through active clinical research, exploratory investigation and Government funding. For many of those people severely affected by ME, Cognitive Behavioral Therapy is simply irrelevant and for many, repeated attempts at Graded Activity schemes have either had no effect at all or have made their conditions even worse. The many studies carried out by the profession of Psychiatry and in particular the "Wessely school" have never followed up those that dropped out of their studies. They never quote any other research in their studies aside from their own. There is most certainly a great injustice happening here and because of the obsessive nature of the "Wessely School" over what they have been actively trying to call a mental illness (using World Health Organisation symbols to legitimise their efforts on web sites and other publications), other specialties have been subtly frozen out in terms of mainstream Government funded research and opinion. At this time the World Health Organisation in Geneva is being petitioned to have this web site corrected because it flouts the international classification ICD10 which classifies ME/Postviral Fatigue Syndrome and indeed Chronic Fatigue Syndrome under section G93.3 (nerological disorders - other disorders of the brain). As you will see, the web site is trying to reclassify by stealth under the mental health category of F48.0). See also reform of the mental health act for further details. This "dogs breakfast" has been going on for the last 2 decades. I had hoped (and so had many others) that the Government Working Party would have drawn the line and told Psychiatry to leave the issue of ME and CFS alone. However, the semingly powerful and coersive psychiatric lobby has (at quite a high level) been systematically appeased and this drawing of the line sadly never happened when the Chief Medical Officer published his report on January 11th 2002. With MEActionUK we are trying in our own way as a discussion forum, to raise awareness of the legitimate alternative view by discussing the medico-political issues and research evidence from around the world that readily and almost weekly supports this legitimate and alternative view. Much of many of the issues we discuss never make it to the pages of InterAction or Perspectives. In the end, we are sure that the alternative view will prevail because science is reaching the stage now where the views of the "Wessely School" will become unsupportable. However, the urgency for fundamental change has been here for many years for those who have been suffering already for decades. We need fundamental change and substantial progress now and not in 10 or 20 years time. It is also observed that those who continue to refute, marginalise and ignore the alternative views that do exist, will (with time) be seen by history to be those who have been ultimately and willfully neglectful with regard to those people suffering the most within our patient community. If you would like to join in the ongoing debate why not subscribe to MEActionUK. Surf to the signing up site and type in your details. You will be sent a welcoming e-mail. You will then be able to participate in the discussion. Please feel free to join in. Normal mailing list rules apply : the only attachments allowed are plain text (ascii/iso-8859-1), and posts may not be forwarded without the author's permission. The list moderators are Stephen Ralph, Laura Jones and Andy Plant. To subscribe to this list you can also click here. There's also a smaller discussion group catering for symptoms and treatments. This is a list called MyalgicE, humour and chat is welcome to lighten the mood. And, so are web page or image file attachments (size of attachment is on your own conscience). There aren't any rules about forwarding from this list. For those who want to discuss Fibromyalgia syndrome, or chat to other fibro sufferers, there's a small, friendly and informal chat group called FMS-UK, owned by Abi Gurden. Click here to visit FMS-UK where you can subscribe to the chat group. Finally, there is a padded cell called MEvanguard where the more paranoid amongst our number can discuss their next hair-brained subversive scheme in private. Membership of this list is arranged by men in white coats. Please contact the editors for further detail. :o) There's plenty of room for other for everyone and if you want to share your concerns then you will be most welcome to do so. MEActionUK is a democratic discussion forum for all shades of opinion. We do not allow personal attacks on fellow list members because everyone has a right to an opinion. With Best Wishes for Good Health, Stephen Ralph DCR(R) Retired (founder and editor of MEActionUK) We hope you find the information here both helpful and interesting. |