Letters- April 200904/30/09 Re: APPG Inquiry on NHS services provision for people with M.E. (Deadline for replies, 5 May 2009)To: Des Turner, MP for Brighton Kemptown, turnerd@parliament.co.uk. Cc: RiME (Campaigning for research into ME), rimexx@btinternet.com; all M.E. contacts, individuals and groups.
Dear Des,
I have asked this same question, from the perspective of an individual diagnosed with M.E. (Myalgic Encephalomyelitis) in 1988, since when, for 21 years now, I have been unable to work as a Research Psychologist, or have anything like a normal social life and I’ve also asked it on behalf of the members of ME Free For All.org, over a time span embracing the Chief Medical Officer’s Report, the MRC’s Research Advisory Group, the Gibson Enquiry, the NICE guidelines and the Judicial Review of treatments recommended by these guidelines but I have never yet received an unequivocal answer. And I can tell you that it is not so much that I and fellow M.E sufferers, are frustrated by conflicting responses received, so much as by not being offered any at all but, instead, ignored and expected to accept what is offered without questioning so-called experts and “Clinical Champions”, who have not satisfied us with reliable scientific evidence to support the way in which they are proceeding. Will you have a crack at it?
Does the slash (/) between CFS (Chronic Fatigue syndrome) and ME (Myalgic Encephalomyelitis), CFS/ME mean “and” or does it mean “or”? That is, do you take CFS and M.E. to be synonymous and interchangeable? Or do you think that M.E. is an illness that can be subsumed under the diagnostic label, Chronic Fatigue Syndrome, which includes several other illnesses of various physical and/or psychiatric causes?
I’m sure that you can guess that veteran M.E. sufferers know that it is neither of these but a discrete neurological illness, named in the 1950s, recognised by the World Health Organisation (WHO) in 1969 and for which there is an abundance of physiological evidence to justify its name today.
But, if you are going to continue to bundle M.E, together with an unknown number of illnesses, all of various uncertain causes, can you say how you are going to be any more likely to provide an enduring effective and safe treatment for people with M.E. than you can with those currently available - Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) - which are have neither of these merits and which, in too many cases, make matters worse, sometimes irrecoverably so.
Yours sincerely Dr John H Greensmith ME Free For All. org Rather than being funded by any insurance or pharmaceutical companies, Professor Wessely's work, whether civilian or military (Research into Gulf War illness, Independent, 29 April 2009), might more appropriately draw on the resources of The Humpty Dumpty Foundation because the diagnostic labels he uses mean whatever he chooses them to mean at any particular time he uses them.
Thus, sometimes Gulf War Syndrome doesn't exist at all; another time it does but not as a separate syndrome (and there is, by definition, such a thing?); or, again it is, he admits, triggered by a real organic cause but, whereas some recover, others sustain their illness by a faulty mind set or behaviour, sometimes by choice, despite the obvious devastating disadvantages it brings for no apparent gains.
It's just the same with M.E. (Myalgic Encephalomyelitis) which, despite having an abundance of scientific evidence to prove its existence as a discrete neurological illness, ample for it to be recognised by the World Health Organisation since 1969, has been swallowed whole by Chronic Fatigue Syndrome (CFS), a veritable diagnostic golfing umbrella so large that it is difficult to think of any condition, with a mix of physiological and psychiatric causes, that could not be dragged under it, should you so wish to make it vanish, in a way that some insurance and private health companies might like to do.
Recovery rates for Professor Wessely's patients don't justify the confidence he has in his treatments (Cognitive Behaviour Therapy and Graded Exercise Treatment). He admits not being able to do anything for about one-third (which, ironically, many of think may be the genuine M.E. sufferers he has in his heterogeneous bundle) and the vast majority remain ill, for decades, suffering relapse after relapse.
Millions of lives, around the World, are affected by the prodigious output of this influential Government advisor, who told us he had retired from the field in 2001. Now, if he really means what we understand by these words, we'll club together for a carriage clock for him.
Yours sincerely Dr John H Greensmith ME Free For All. org Doctors and researchers, in many countries around the World, affected by this latest potential viral pandemic, are appealing for people to stop calling it, "swine flu" (Stop calling it swine flu, says US, Daily Telegraph, 29 April 2009), simply because it isn't correct, since it it is not exclusive to pigs but also affects other species, including chickens and humans.
People who suffer from M.E. (Myalgic Encephalomyelitis), those trying to research its origins and those trying to treat it, have been begging the same for the inaccurate and derisory "yuppie flu" and for the same reason, that it affects both sexes, all age groups and social classes, globally and hinders rather than helps progress towards recovery.
But, it seems that, once someone has decided on a catchy headline name, no matter what anyone with any experience, or ailed by it, says, it is at least as hard to shift as the illness itself.
Yours sincerely Dr John H Greensmith ME Free For All. org 04/28/09 Re: W.H.O. M.E.? poster design competition goes international, 28 April 2009In addition to our UK-wide poster design competition, which started out as exclusively for M.E. Awareness Week, 10 - 16 May 2009 but which, due to an overwhelming response - and still they come - now gives us themes for one-a-month, we have come up with a cracker of an idea for one particular theme, which we believe everyone should have a chance of sharing in because it is equally applicable around the world.
It is to design a poster with the heading W.H.O. M.E.?
I'm sure you get the idea of the World Health Organisation's recognised Myalgic Encephalomyelitis G93.3 (and none of your chronic fatigue nonsense) and, of course, the play on the words M.E. and ME (myself).
Since time is very short, for International Awareness Day on 12th May, we need to move fast, if we are to make it a truly International affair and to share the work load we are appealing for help from an International M.E. co-operative of individuals and organisations, who represent M.E. as a discrete neurological illness, quite distinct form others under the Chronic Fatigue Syndrome banner. Others need not apply! If you have to ask what is meant, it probably isn't for you.
Here's how it would work: Anyone, from anywhere in the World, amateur or professional, can submit a design. If you are going to enter, you need to do it NOW. Entries to info@mefreeforall.org
We also need someone NOW who can set up for us a uniform standard system of receiving entries at info@mefreeforall.org, so that we have the software to open them and, then, a method of dispatching them to our local volunteers, now in all countries taking part, in an A4 size, ready for them to click a button and walk them round to places to display. Again, we need at least one such person NOW. (We don't need anyone to tell us their theories or problems that could be faced - we have had plenty of those, thank you, just the person who can really do the job).
The posters will be A4 size, have the name of the person who designed it (if they wish, or not if they prefer anonymity) and the name of the national/local M.E. support group of the country or region of the M.E. Co-operative members taking part.
We have at least two ME Free For All.org volunteers dedicated to this job alone but we are going to need some help.
To summarise: We need people to produce eye-catching designs, devise a uniform, simple, system to receive and dispatch, some administrators and some local reps to help make sure they get displayed NOW. IMMEDIATELY. (No pressure then!).
Remember, we want the people who can and will do, not any other sort, thank you very much.
Any offers of help and those wishing to be identified with the International M.E. Co-operative, please e-mail to my e-mail address drjohngreensmith@mefreeforall.org or info@mefreeforall.org with "W.H.O. M.E.?" poster competition OR International M.E. Co-operative etc. in the subject line.
Best wishes Dr John H Greensmith ME Free For All. org
PLEASE NOTE: WE HAVE NOW DECIDED THAT THESE POSTER DESIGNS NEED NOT BE EXCLUSIVELY FOR M.E. AWARENESS WEEK 2009. SO PLEASE SUBMIT YOUR IDEAS ANY TIME YOU HAVE A GOOD ONE FOR US. AND YOU ARE VERY WELCOME TO JOIN THE INTERNATIONAL M.E. CO-OPERATIVE WHETHER YOU SUBMIT A DESIGN OR NOT. When Professor Simon Wessely told readers, in a recently published article in a well-known scientific periodical (When illness is mostly in the mind, New Scientist, 11 March 2009) that M.E. (Myalgic Encephalomyelitis) is not recognised in some countries, such as France and Sweden, he received the reply from many people, in countries all around the World, that the doctors in those countries who diagnose it and the people who run the support groups for M.E. sufferers (for example, asso.nordnet.fr/cfs-spid/; me-cfs.se) would be surprised to hear it and disappointed that their work was not at least acknowledged.
I don't know whether syringing his ears might be sufficient but since he repeats it here (What's wrong with you? It depends where you live, Independent, 28 April, 2009), it may indicate a determination to spread a quite virulent myth. It is likely to have a pretty big effect on the provision of treatment for people with M.E., no matter where they live, if someone with Professor Wssely's global influence denies its existence, re-names it, or feeds erroneous information, such as "most people get over it" when, in fact, most never do recover, some remain seriously ill for decades and some die from it.
Yours sincerely Dr John H Greensmith ME Free For All. org I cannot believe that Jeremy Laurence has done so much damage to so many people by publishing the views of Professor Simon Wessely (What's wrong with you? It depends where you live, Independent, 28 April, 2009).
Professor Wessely has made a career out of promoting the concept of people with systemic illnesses which are difficult to diagnose as suffering from 'abnormal illness beliefs'.
People with difficult to diagnose symptoms such as those linked to Irritable Bowel Syndrome, ME, Chronic Fatigue Syndrome, Gulf War Syndrome, Fibromyalgia, Pre-Menstrual Syndrome etc. need biomedical research to establish the underlying cause of their physical illness.
I just hope than someone will have the intellect and courage to challenge and disprove this cruel attitude which appears to be the empire building of a group of psychiatrists who see their patients as pawns in their game.
People who are feeling physically ill for an extended period of time need help and support from medical professionals. They do not need to be treated as though they are suffering from psychological illness.
In the past, illnesses such as Epilepsy, Diabetes, MS, Parkinson's Disease, Ulcerative Colitis, Brain Tumours etc were diagnosed as Hysteria which was a supposed psychiatric condition.
Medical conditions which manifest themselves as 'systemic' (more than one symptom ) need very careful investigations to establish underlying cause.
Many people who are given the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis are later found to have autoimmune diseases such as Coeliac Disease. Post-viral fatigue is a well-known symptom and is nothing to do with a poor mental attitude towards convalescence.
I am disgusted to read this simplistic outline of current medical attitudes towards people who are suffering due to the works of men like Wessely.
Jill Cooper Rugby It is rather worrying that psychiatrist Simon Wessely is claiming that ME is not recognised around the world (What's wrong with you? It depends where you live, Independent, 28 April, 2009) as this would imply that over 4000 research papers showing serious immunological, neurological, endocrine, cardiac and gene expression involvement in ME are being ignored.
Psychiatry has historically labelled illnesses as psychosomatic which are later proven to have a demonstrable biological basis, and Professor Wessely is just continuing this disreputable and rather nasty tradition. It is unscientific, unprovable and in the case of ME has led to the diversion of funds away from biomedical research and into inappropriate psychosocial research. The recent deaths from ME that our group has experienced highlight the need for biomedical studies which will not only lead to treatment and hopefully a cure, but make redundant the involvement in ME of the psychiatric profession, something Professor Wessely would obviously strive to avoid.
Hayley Klinger Media Relations 25%MEGroup www.25megroup.org 21 Church Street Troon Ayrshire KA10 6HT I strongly disagree that the French do not recognise CFS. Their general medicine website acknowledge it. It’s the same in any other country some individual doctors do and some don’t but it is a personal view and not fact. It’s the likes of Professor Wessely spreading pseudo facts (What's wrong with you? It depends where you live, Independent, 28 April, 2009) that people with ME (Myalgic Encephalomyelitis) and its umbrella term CFS (Chronic Fatigue Syndrome) are treated so poorly. Please note that spasmophilia is the French term for tetany.
'The "hypo-sleep syndrome" is a concept that gathers together the set of disorders that may appear at the occasion of a lack of sleep efficiency.
In our opinion, those symptoms can be interpreted like alarm signals and appear at the stage when the subject who resists against tiredness exceeds his/her limits and uses his/her will to draw from his/her reserves
In our hypothesis, CFS is one of the clinical forms of the "hypo-sleep syndrome" and presents narrow links with "spasmophilia" (or tetany) and fibromyalgia.'
[This information is taken from the French Sommeil et medecine generale]
I Thorpe (ME sufferer for 23 years) Rotherham It seems absurd and arrogant to say that just because symptoms are unexplained that those people suffering them have the similar illnesses (What's wrong with you? It depends where you live, Independent, 28 April, 2009). Surely, what it means is simply that we don’t know enough yet about those symptoms and the human body to put a correct and meaningful label on it. It reminds me of the days when MS was known as Hysteria. How cruel would it seem now to call someone who had MS a hysteric these days? Yet that is the kind of reaction that people with unexplained symptoms face on a daily basis.
Perhaps if we spent more time carrying out good quality biomedical research, and less time finding nice ways to say that these people need to just get over it, then we may have less people seeking answers where there aren’t any, and less controversy, distrust and suspicion.
Alice Burchfield West Sussex There really is ME in FranceWhile I agree that many French doctors still refuse to accept that ME/CFS exists as a distinct clinical entity, this situation cannot be used to conclude that the illness is not present in France (What's wrong with you? It depends where you live, Independent, 28 April, 2009).
A proper epidemiological study (The epidemiology of fatigue and depression: A French primary care study. Psychological Medicine. 25 (5) 895-906, September 1995), which investigated the prevalence of persistent fatigue in France, found that this is a significant and common presenting complaint in primary care. Here at the ME Association we are regularly contacted by people in France who are desperately seeking help with regard to both diagnosis and management – some of whom appear to be receiving inaccurate explanations for their persisting ill health.
The simple fact is that if people with ME/CFS do too much and exceed their limitations – as may be advised by doctors who believe the problem lies in abnormal illness beliefs and behaviour. – they invariably feel worse as a result. The key to recovery in ME/CFS is careful pacing of activities, a process involving small but flexible increases in activity that take account of the person's limitations.
All of which is consistent with the neurological abnormalities that have led the World Health Organisation to officially classify ME as a neurological disorder (in section G93.3 in ICD10).
Dr Charles Shepherd Hon Medical Adviser M.E. Association Gawcott Buckinghamshire Research into Gulf War illnessThe letter from Professors Foster and Gosden, Dr Melling and Colonel English (UK needs research funding for Gulf War illnesses, Independent 27 April 2009) draws attention to research carried out here at King's on the health of Gulf War veterans but they say that this is performed within a "restricted environment" and that veterans have not been "investigated . . . by dedicated clinicians".
King's College London is not a "restricted environment" and every piece of research we have conducted into Gulf War Illness has been published in the scientific journals. Readers should also know that the research has been clinical and multi-disciplinary – involving specialists in anthropology, biochemistry, dermatology, epidemiology, genetics, history, immunology, neurology, neurophysiology, neuropsychology and psychiatry – all reflected in the scientific publications available via our website.
We can all agree that research continues to be needed into the health of all our veterans, not just those of the 1991 Gulf War. More can and should be done in understanding their health problems. But it must be informed by what has already been achieved in this area.
Professor Simon Wessely
Professor Christopher Dandeker
Co-directors King's Centre for Military Health Research King's College London 04/25/09 Re: Your M.E. Awareness posters - Together, we can cover the whole country, 25 April 2009At the beginning of April we launched a competition to design an eye-catching poster to raise public awareness of the illness M.E. (Myalgic Encephalomyelitis) during the week 10 - 16 May 2009. It got off to a very slow start and we began to fear that we had a flop on our hands. But, by the third week, we had reached places as far apart as South Devon and Stornoway. We have had so many entries of truly stunning, professional, quality that, in addition to the one for M.E. Awareness Week, we are going to have a different theme for every month of the year.
To share out the cost and energy, which would be impossible for only a few people to bear, we are looking for local representatives in every part of the UK, to cover a 2 or 3 mile radius from their homes, which would be easily manageable and affordable for each. Some overlapping would be no bad thing to ensure that we cover every inch of the country. The job is simple enough: One of our art experts will make sure the poster for each particular month is ready to go and fits comfortably on a piece of A4 paper. You just have to hit the button on your printer, run off as many as you can display locally and then hoof them around. If you have a super-duper printer, or a friend will let you use theirs, so much the better but quality is much less important than getting them up there, so don't let that hold you back from volunteering. That's all it will cost you: some paper, ink and shoe leather. You don't need to make an extra chore of it; just do it when out shopping or taking the dog for a walk.
Everyone is very welcome to join in, whether you are just starting out, or already have some contacts in a local M.E. group. You don't need to have M.E. yourself, or know anyone with it, to do us a big favour every month. You might make some new friends on the way. We need you right now, so please send us an e-mail to info@mefreeforall.org with "MEFFA Local Rep" in the subject line. We'll give you some advice on how to make the best impact locally.
Together, we can cover the whole country.
Thank you Best wishes Dr John H Greensmith ME Free For All. org Anyone who has experience of the dreadfully disabling neurological illness M.E. (Myalgic Encephalomyelitis), either as a sufferer, carer, doctor or researcher will know that a story about a person, currently having M.E., running a marathon (It's all about ME!, Reading Chronicle, 23 April 2009) belongs on the science fiction pages rather than in the news section. The reason is, quite simply, that they wouldn't be able to make it to the starting line.
There isn't, yet, any definitive diagnostic criteria for M.E. but we do know for sure that it isn't chronic fatigue because no amount of sleep refreshes the overwhelming enervating experience, symptomatic of M.E., as it does normal tiredness. But, we can probably be most confident that Karen Roach (as well as others planning to undertake similar energetic ventures), does not have M.E. because no M.E sufferer would be able to expend even minimal energy, let alone train for a marathon, for five days in a row because of post-exertional malaise, or an exceptionally long recovery time, disproportionate to the amount of energy expended, which is a hallmark of the M.E. sufferer.
May I suggest that M.E. sufferers - not only in the Reading area - take up the Health Reporter James Kell's invitation to call him on 0118 953 3140 and, in return, he calls the 25% Group on 01292 318611 or e-mails them at enquiry@25megroup.org who will show him some people who really do have M.E. and then your readers will see that, whatever Karen may have, it is not Myalgic Encephalomyelitis. For many of them it would be a marathon to walk unaided from their bedroom to their toilet.
James should be just in time for M.E Awareness Week (10 - 16 May 2009) to open a few eyes to this shocking illness which devastates so many lives.
Yours sincerely Dr John H Greensmith ME Free For All. org Whilst I admire Karen Roach's determination to run the marathon (It's all about ME!, Reading Chronicle, 23 April 2009) and raise money, whatever is/was wrong with her, it most definitely is NOT M.E. If it was, she would not be able to run a mile let alone a marathon!
Again, due to lack of research and a proper diagnostic test, someone else has been labelled with something they haven't got whilst the rest of us suffering with ME are left to rot, despite retaining our positivity and spirit.
Karen Rippon Cardigan Ceredigion I am glad that Karen Roach is recovered enough from whatever is wrong with her to run a marathon (It's all about ME!, Reading Chronicle, 23 April 2009) but it certainly isn't M.E.(Myalgic Encephalomyelitis). No-one with M.E. could manage such a tremendous feat, most of us struggle to accomplish every day tasks such as showering. Perhaps she is recovering from post viral fatigue?
There is a growing tendency for doctors to use M.E./CFS as a dustbin diagnosis for patients presenting with fatigue from any cause, whether physical or mental. However, M.E. is a discrete neurological illness and has been classified as such by the World Health Organisation since 1969. It is just not possible to overcome it by diet or lifestyle any more than it would be to overcome other neurological illnesses such as Parkinson's or M.S. by these means. One of the diagnostic criteria of M.E. is post-exertional malaise and, the more sufferers push themselves, or are pushed by misguided medical staff, to do physical activities, the more they will relapse (often permanently).
M.E. devastates lives and is excruciatingly painful. A quarter of all M.E. sufferers are house or bed bound, some spending their lives in darkened room unable to talk, walk or swallow. Sufferers, who have died of M.E., have been found at autopsy to have massive infections of their hearts, central nervous systems and muscles. Most sufferers never recover.
For over 20 years almost all Government M.E. research funding has gone, outrageously, to psychiatrists, who (ignoring over 4,000 studies proving it is a physical illness) insist that M.E. is an 'abnormal illness belief'. This strange allocation of funds has prevented the discovery of both a diagnostic test and of effective biomedical treatments. The various bacteria, viruses and parasites known by American researchers to be causing M.E. (Human Herpes 6A, Cryptostrongylus Pulmoni, Parvovirus B19, Epstein Barr, Lyme disease, etc.) are not being researched or tested for in UK patients and, thus, the correct treatment for these pathogens is not being administered.
The only NHS treatments available for M.E. (totally useless Cognitive Behaviour Therapy and the graded exercise that all patient charities condemn as harmful) are psychological and undertaken in clinics where M.E. patients are mixed together with people with other fatigue causing conditions and where the staff are erroneously trained to view M.E. as a mental disorder. This situation is disgraceful.
The situation for M.E. sufferers in the UK remains very bleak, many existing in a living hell but two tiny charities are undertaking biomedical research that may show the way forward:
ME Research UK
and the CFS Research Foundation
M.E. Awareness Week is 10th - 16th May 2009
Yours Sincerely H.Patten Somerset My hat comes off to Karen Roach (It's all about ME!, Reading Chronicle, 23 April 2009) for her achievements with running but it leads me to doubt whether she has the true neurological disease of ME. To run a marathon was once an ambition of mine but one I’m sadly unable to fulfil due to having ME, and, indeed, I am lucky if I can manage to get washed and dressed in a day, let alone go running.
ME (Myalgic Encephalomyelitis) is not just a challenge to overcome with determination and faith in God. ME is a severe neurological illness (as classified by the World Health Organisation) and can devastate lives. I cannot speculate on what illness Ms Roach does has but I can tell you, as a person who has lived with this illness for eighteen years, that I cannot identify with any part of her story and that I am sure I am not alone in feeling this way. I would hate for this article to give people the impression a person can battle through this illness and make themselves better, it just does not work like that.
Alice Burchfield West Sussex Kudos to Karen Roach to be participating in a marathon and raising funds (It's all about ME!, Reading Chronicle, 23 April 2009). Tony Waldron (Depressed ME, New Scientist, 22 April 2009) asks what proportion of the respondents to the (UK) ME Association's survey were made worse by Graded Exercise Therapy (GET). Out of 909 people, 23.4% (213) said they were made slightly worse and 33.1% (301) were much worse. If this was a drug, even if these were the only people made worse, these adverse events would be taken seriously. Unfortunately, there is no Yellow Card Scheme for reporting adverse reactions to non-pharmaceutical interventions, so such data generally is not officially recorded.
Until there is further research to establish who are the patients who might benefit from exercise programmes and who may harmed, we feel caution is required when recommending such treatments to patients diagnosed with ME or Chronic Fatigue Syndrome (CFS).
Tom Kindlon Information Officer Irish ME/CFS Association PO Box 3075 Dublin 2 Ireland Tel: +353-1-2350965 04/18/09 Re: Devoted mother charged with attempted murder of paralysed daughter who was bed-ridden for 17 years, Daily Mail, 16 April 2009 #1How can it be in the public interest to waste time and money charging a loving and devoted mother like Kay Gilderdale (Devoted mother charged with attempted murder of paralysed daughter who was bed-ridden for 17 years, Daily Mail, 16 April 2009) with the attempted murder of her chronically ill daughter, Lynn?
Surely the public would be far better served and the money far better spent, by finding out what causes this devastating physical illness and finding a cure for the rest of us who are still suffering with it.
I haven't got ME anything as bad as Lynn (i.e. I am not bedbound or housebound all the time) but know of two others who are. Even so, it has devastated 13 years of my life and has prevented me from having children and living a normal life.
Karen Rippon Cardigan Ceredigion 04/19/09 Re: Devoted mother charged with attempted murder of paralysed daughter who was bed-ridden for 17 years, Daily Mail, 16 April 2009 #2It does not serve justice very well at all for Kay Gilderdale (Devoted mother charged with attempted murder of paralysed daughter who was bed-ridden for 17 years, Daily Mail, 16 April 2009) to be charged with anything which may have contributed to the death of her daughter Lynn, who had been extremely severely ill with M.E. (Myalgic Encephalomyelitis) when, during 17 years of selfless and devoted care, her skills as a nurse and her instincts as a mother had undoubtedly preserved her daughter's life on several perilous occasions, while they prayed for Lynn's recovery from this awful illness, which destroys so many lives of both sufferers and their carers.
It would be more in the public interest if but a fraction of the money spent on legal fees was used to fund promising biomedical research in the search for better understanding of the cause of this dreadfully disabling neurological illness, thus increasing the chances of finding a cure and reducing the probability of the repetition of a tragedy such as this.
No judge on earth can impose more than the life sentence which began for both mother and daughter on the day that poor Lynn became ill.
Yours sincerely Dr John H Greensmith ME Free For All. org 04/11/09 Re: I stayed in bed for four years, That's Life!, Issue 15, 16 April 2009 #1The hybrid CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis), with which Liza-May Brown (I stayed in bed for four years, That's Life!, Issue 15, 16 April 2009) was diagnosed is as controversial as the claim that it was the Lightning Process which brought about her recovery.
They are not the same thing at all. Whereas Chronic Fatigue Syndrome contains a number of illnesses, which have a variety of physical and/or psychiatric causes, M.E. is a discrete neurological illness, named in the fifties, recognised by the World Health Organisation in 1969 and for which there is evidence to justify its name today.
There is no scientific evidence for a lasting effect, without relapse, for any chronic fatigue illness and M.E. can no more be talked better than can MS, Cancer, AIDS or Parkinson's.
Liza-May was already significantly better, at work and enjoying a social life, when she started on the Lightning Process, as was the Lightning Process celebrity patron Esther Rantzen's daughter, Emily Wilcox and any incremental improvement may have been achieved, without the Lightning Process but with natural healing in time, or after, or along with, other treatments.
I do hope this story, which has ended happily for Liza-May, does not raise false hopes in M.E. sufferers, or put them under pressure from friends and relatives to try it and be disappointed.
Yours sincerely Dr John H Greensmith ME Free For All. org [This article also appeared in the Maldon and Burnham Standard, 14 April 2009]
I am pleased that its inventor, Phil Parker, agrees that the best research strategy to test the efficacy of the **Lightning Process (Lightening* [sic.] strikes, Colchester Gazette, 14 April 2009) [**Note: Registered Trade Mark spelling] for the treatment of M.E. (Myalgic Encephalomyelitis) is a well planned randomised controlled trial, with particular attention to diagnostic inclusion criteria, sample size and selection, appropriate statistical analysis and follow-up studies because this is exactly what this Research Psychologist, diagnosed with M.E. for 21 years, is planning to do.
Most crucially, claims that the Lightning Process cures, or is responsible for any degree of recovery in, people with M.E. must depend on them ever having had a diagnosis of M.E., or having M.E. at the time when they started the Lightning Process. This will never be satisfactorily achieved so long as M.E. is bundled in with all those illnesses in the catch-all Chronic Fatigue Syndrome, which have variety of physical and/or psychiatric causes. Nor will the statistics be valid or reliable so long as practitioners like Lee Brooker excludes some people, for reasons she doesn't entirely make clear here.
Incidentally, most people with M.E. will tell you that they couldn't manage three consecutive days of any sort of treatment without severe exhaustion resulting in relapse.
There is some diagnostic uncertainty in the case of the relatives of the two celebrity endorsers of the Lightning Process, Esther Rantzen and Austin Healey. Esther's daughter, Emily Wilcox, had very severe M.E. from about 1995 but by 2001 she claimed that Cognitive Behaviour Therapy had cured her and library pictures show a very different girl, looking fit and healthy again. But if her recovery was total, if she was already better, why would she take any other treatment at all? And if her faith in CBT was misplaced why should we be any more confident in her recommendation of the Lightning Process which, Esther says, has restored a fairly normal working and social life. Now, everyone is entitled to patient confidentiality but unless they reveal the stages of recovery attributable only to that treatment, we won't be able to assess whether the Lightning Process was responsible for any incremental recovery, or whether it was a natural healing process with time, or due to any other treatments including drugs, taken before or concurrently. Similarly, we would need to know whether Austin Healey's wife had a diagnosis of M.E. in addition to the well-publicised severe post natal depression she suffered, in order that we may exclude different illnesses and other treatments which would distort the claims of exclusive success for the Lightning Process. To repeat, we should be sensitive about intruding on patients' personal medical history but, unless they willingly make available relevant details, we can not rely on celebrity endorsement alone.
Lest Phil Parker and any other advocates think that we are singling out the Lightning Process for any special consideration, let me assure them that we shall be applying the same rigour of scientific scrutiny to all treatments - orthodox, alternative and radical - offered to people with M.E.
Yours sincerely Dr John H Greensmith ME Free For All. org [This article also appeared in the Maldon and Burnham Standard, 14 April 2009]
I have had ME since March 1996 and did the Lightning Process (Lightening* [sic.] strikes, Colchester Gazette, 14 April 2009) in December 2006. It did not help me at all and the training process itself was obviously geared towards psychological problems rather than physical illness. I worried about how I was going to attend a three-day course but was told that I would begin to feel better before the course even began or, if not, by the end of the first day!
Unfortunately, some people are diagnosed with ME (Myalgic Encephalomyelitis) when they have other things wrong with them - this then leads to the perception that the Lightning Process can 'cure' ME which it cannot. Others diagnosed with ME get better over time but don't realise it and get stuck in the mindset that they are still ill - these people can be helped by the Lightning Process. For those of us who are still ill the process is dangerous - I know of people who have had relapses after doing it. Fortunately, I recognised it for what it was and didn't blame myself when it didn't work.
People with ME should be wary of this process.
Karen Rippon Cardigan Ceredigion [This article also appeared in the Maldon and Burnham Standard, 14 April 2009]
I felt compelled to write to you regarding your article Lightening Strikes (Lightening* [sic.] strikes, Colchester Gazette, 14 April 2009).
Having had ME for eighteen years, I would love to believe there was a miracle cure and that, after three days of training, I could go partying till the early hours of the morning: that would truly be a dream-come-true. However, this treatment is controversial because there is just no evidence (other than anecdotal) that it works and it encourages vulnerable people to pay (what amounts to a lot of money for someone on disability benefits) for a treatment where if it fails, you are told that it was your own fault for not working the programme. In addition, it treats a physical illness with what amounts to talking therapies.
These articles are popping up all over the country at the moment, and they all follow a similar story in which the patient, who is severely ill for many years tries Lightning Therapy, recovers in three days and subsequently goes on to train to be a Lightning Practitioner. So many of the people who publicly announce how this therapy worked for them, are now in the business of making money from it ... The cheapest form of advertising it seems to me.
I often feel pressure from family and friends to try every possible cure or therapy out there, especially following the publication of articles such as these. But for me, a treatment like this could not only set me back financially and emotionally (from the hopes of a cure being dashed), but in fact is actually impossible to partake in because, along with many people with this severely debilitating physical illness, I am unable to undergo any therapy for three days in a row.
I have no doubt that this therapy could possibly help with some of the side issues around illness and (around simply being human) that everybody has, such as low self-esteem, but then, so could a good self-help book, and that is a much cheaper option. I would like to encourage fellow sufferers of this illness to evaluate the evidence before putting your trust into someone else, and your cash into their pocket.
Alice Burchfield West Sussex 04/17/09 Re: After Basra, a fight for life: story of a 'broken soldier' of the Iraq war, Guardian, 14 April 2009Iraq inquiry needs to look into the legacy of two Gulf wars
Your harrowing account of the effects of the second Gulf war in 2003 on our soldiers exposed the government's tactics of delaying any report from an inquiry until after the next election (After Basra, a fight for life: story of a 'broken soldier' of the Iraq war, Guardian, 14 April 2009). But there was no mention of the first Gulf war, 1990-91, which after 18 years and repeated government and Ministry of Defence procrastination and prevarication has slipped from media and public consciousness.
This is regrettable since on 24 April, at a meeting in the House of Lords - which the MoD chose not to attend - American researchers presented their second major research report, the Binns report, costing some $300m, which makes clear that some 28%-32% of troops deployed in this war are now ill with a complex chronic multi-system illness for which two causally associated agents have been identified: the use of pyridostigmine bromide in nerve-agent protection sets, and overexposure to organophosphate pesticides. Other possible causes have not been ruled out. There has been a doubling of the incidence of motor neurone disease and brain cancer.
The report also makes clear that Gulf war syndrome is not psychiatric or stress-related, nor a result of post-traumatic stress disorder - both excuses/explanations paraded by the MoD and successive UK governments. Our own "treatments and applications" and not enemy actions are responsible for their condition. The most toxic war in western military history has had the greatest proportion of casualties of any war, but is now almost forgotten and their families abandoned. Any inquiry into the Gulf wars must include the first Gulf war as well as the 2003 Iraq war for justice to be done.
Professor Malcolm Hooper President, National Gulf War Veterans and Families Association and Chief Scientific Adviser to UK Gulf War Veterans UK needs research funding for Gulf War illnessesYour report (Ministers' war of words over treatment of ex-servicemen, 13 April 2009) raises deeper questions as to the Government's responsibilities to personnel after they have sustained injury as a consequence of firearms or chemicals during the performance of their duties.
During the 1990-1991 Gulf War organophosphates were employed as insecticides by allied troops who were additionally exposed to similar chemicals when containers of nerve gas (Sarin, Tabun, etc) were destroyed at Khamisiyeh. Of the military personnel deployed to the Persian Gulf, 11 per cent of about 53,000 British troops and 26 to 32 per cent of about 697,000 US veterans have developed a range of chronic incapacitating illnesses, predominantly central neurological, although other organ systems are becoming affected.
The Congressionally mandated report "Gulf War Illness and the Health of Gulf War Veterans" has incontrovertibly confirmed the majority of military personnel presenting unwell to be affected by a range of organic illnesses rather than psychological disorders and further identifies organophosphates to be a major cause of Gulf War illness.
The US has already committed $436m to the investigation of Gulf War illness and encouraged studies to be performed by members of the wider medical and scientific communities. A large number of research articles have been published that have significantly increased understanding of the modes of action and consequences of organophosphates in humans.
No equivalent funding has been available in the UK. Here, expenditure totals only £8.5m, with work being performed within the restricted environments of the Porton Down Research Establishment and the Institute of Psychiatry in London. Not only have affected UK military personnel not benefited from being investigated and managed by dedicated clinicians, but the medical and scientific communities here have been unable to contribute their expertise or to benefit from investigating the clinical, pathological or scientific basis of these complex illnesses occurring as a consequence of exposure to organic chemicals widely employed in military and civilian environments, particularly agricultural communities.
There is a demonstrable need for medical and scientific communities in the UK to receive dedicated funding to investigate the pathological basis of new iatrogenic diseases caused by chemicals, including therapeutic agents, recognised to modify the phenotype of human tissues.
Christopher S Foster MD PhD DSc FRCPath Professor of Cellular and Molecular Pathology, University of Liverpool
Jack Melling PhD FRCPath Senior Science Fellow, Center for Arms Control & Non-proliferation, Washington DC
Christine M Gosden BSc PhD FRCPath Professor of Molecular Genetics, University of Liverpool
Colonel Terrence English OBE FCIS Former Director of Welfare of the Royal British Legion 04/14/09 Re: Young ME sufferer Sarah's battle to fulfil dreams, Newcastle Sunday Sun, 12 April 2009 #1Matthew Beall is, indeed, the "devoted" boyfriend of severe M.E. (Myalgic Encephalomyelitis) sufferer Sarah Griffiths (Young ME sufferer Sarah's battle to fulfil dreams, Newcastle Sunday Sun, 12 April 2009) to be undertaking a 140-mile sponsored bike ride to raise funds for M.E. research.
It shouldn't be necessary for crucial biomedical research to depend on the generosity of selfless individuals like Matthew but money should come from government, even if as prudent investment to get people off disability benefits, leaving aside any caring, humanitarian, considerations, which long-term sufferers and their loved ones think should come first
But, since it doesn't, all M.E. sufferers will be cheering on Matthew to gather every penny he can towards helping hundreds of thousands of people, like Sarah, in this country, millions around the World to regain her previously healthy life which this dreadfully, disabling, neurological illness has stolen from her.
Yours sincerely Dr John H Greensmith ME Free For All. org 04/16/09 Re: Young ME sufferer Sarah's battle to fulfil dreams, Newcastle Sunday Sun, 12 April 2009 #2Congratulations to Matthew Beall, Sarah's boyfriend, for his 140-mile bike project (Young ME sufferer Sarah's battle to fulfil dreams, Newcastle Sunday Sun, 12 April 2009). I hope he will be sponsored by many to support research for the Association of Young People with ME. The process by which NICE evaluates "evidence" must itself now be subject to urgent and rigorous scrutiny
Sir, The power to define the parameters of any inquiry is the power to shape its outcome. The National Institute for Health and Clinical Excellence (NICE) now insists that the only research method it will accept in considering interventions for psychological disturbance is one designed to evaluate medical treatments for defined medical conditions. So it accepts only randomised control trials (RCTs), which are only suitable for psychological therapies, such as Cognitive Behavioural Therapy (CBT), that consider human psychological responses as “illness”. Unsurprising, then, that under its own terms, it finds CBT the only intervention with a substantial evidence base.
What surprises us more is that NICE remains — and is permitted to remain — so determined to ignore the great mass of research using other respected methodologies that point to the effectiveness of a variety of psychotherapeutic and counselling approaches, and the failure of the RCT paradigm to show that any one form of therapy is consistently superior to the others.
We fear that the dire consequences of this stance have yet to be fully recognised by all those who care about the wellbeing of children, young people and adults in the UK. CBT does not claim to “cure all”. It is a particular approach to particular difficulties. If this becomes the only approach NICE supports because of its self-imposed frame of reference, other approaches that enrich and sometimes save lives will wither, as will any possibility of further developing their research base. So the screw twists another turn.
The process by which NICE evaluates “evidence” must itself now be subject to urgent and rigorous scrutiny. Without this, psychotherapy and counselling in the UK will be impoverished and, more importantly, vulnerable children and adults will be denied access to respected and well-researched therapies that fit their needs.
James Antrican Chair, UK Council for Psychotherapy
Dorothy Ramsey Chair, Association for Family Therapy
Professor Arlene Vetere President, European Family Therapy Association
Professor Peter Stratton Chair, UKCP and EFTA Research Committees Sir,
Many M.E. (Myalgic Encephalomyelits) sufferers are as equally opposed as James Antrican et al (Therapies that help are being ignored, Letters, 11 April 2009) to the way in which NICE (The National Institute for Health and Clinical Excellence) has come to its conclusions about recommending Cognitive Behaviour Therapy (CBT) as one of the two treatments for M.E., since it has no lasting benefit, without relapse (the other being Graded Exercise Treatment (GET), which leaves a majority worse after it, some irrecoverably so).
But when Antrican et al are asked to produce their evidence for "the effectiveness of a variety of psychotherapeutic and counselling approaches" as shown, for example, in sustained recovery, without relapses, to such an extent that patients can return to work or school and resume a previously normal lifestyle, I think they will also be found wanting.
What M.E. sufferers are crying out for is a fraction of the money, being squandered here on management techniques keeping them ill, to be spent on biomedical research in an attempt to get them better.
Yours sincerely Dr John H Greensmith ME Free For All. org I have the utmost admiration for Susan Foster in her endeavour to help those most severely affected by Myalgic Encephalomyelitis (Trapped in her own home by ME, Rotherham Advertiser, 10 April 2009).
My main concern when the CFS/ME Rotherham Group folded last year was that those housebound, or near housebound, and the newly diagnosed would be left without any support at all. As you will have gathered by Susan’s story, there is little or no help from our local heath authority.
It is almost 20 years since I was very rudely evicted from the A&E department of Rotherham General Hospital after I had called an ambulance for breathing difficulties. I was told I was making myself ill because I had not had a baby. My husband was told not to help me at all despite the fact I could not hold a knife and fork or swallow easily. I spent 18 months alone in a dark quiet bedroom being spoon fed, placed on a large orange bucket to pee and being hauled in and out of the bath with a large towel. In constant pain and awake all night trying to control my breathing, (I found out later that this was due to my intercostal chest muscles cramping and not hyperventilation at all).
Despite my GP asking for home physio and social service involvement I got neither so my husband became my sole carer despite having to work long hours to make ends meet.
Twenty years later things remain the same and people with M.E are still invisible to most people.
M.E. is a very serious distressful and debilitating neurological illness recognised as a discrete illness by the World Health Organisation. The term Chronic Fatigue Syndrome is an umbrella term for many different illnesses in which sadly M.E. has been dumped and this has caused so many problems including the sufferer being ridiculed or dismissed as being tired all the time. Twenty five percent of sufferers fall into the same category as Susan and myself. What we need is help with shopping, cooking and cleaning and keeping up personal hygiene and appearance during what I call the ‘crash’ period. Published research has shown M.E can be more disabling than MS. A short trip out of the house for maybe 20 mins to 1hr at a time, when able, would be wonderful. We really need a’ buddy’.
Scientists at the Whittemore Petterson Institute in America are optimistic about being able to diagnose CFS. with a simple blood test and it has shown several different illnesses (M.E will be one) and they are finding even more as time goes on. This blood test is of course for research purposes only and in America not England There is a fault within the Immune system. There are drugs out there that are being successfully used to treat these different illnesses. They are finding severe abnormalities in the spine of autopsies on those who have died. People with M.E have to provide funding for all this and that means it will be a very slow process. If we had government backing it could move rapidly.
Please, please, support Susan anyway you can.
Mrs Irene Thorpe Kimberworth A keyword and principal ingredient for making progress amongst people with M.E. (Myalgic Encephalomyelitis) and those who care for them, must be "support".
I hope that Susan Foster (Trapped in her own home by ME, Rotherham Advertiser, 10 April 2009) gets the support she deserves in establishing a local support group in Rotherham because the nearest, in Sheffield, is too far way for ill people to travel.
M.E. sufferers don't always get the support they should expect from GPs because some less enlightened primary doctors seem unable to admit ignorance when they should do and, meantime, provide supportive treatment for particular symptom relief when they can.
They certainly don't get the support from secondary services, run by misleadingly named "Clinical Champions" or M.E. experts when they are neither because patients are only offered a gallimaufry of two management techniques, one of which, Cognitive Behaviour Therapy (CBT), has no lasting benefit, without relapse, while the other, Graded Exercise Treatment (GET), can be harmful since it leaves a majority worse after it, some irrecoverably so.
Nor are they getting support from government or grant-awarding bodies, such as the Medical Research Council (MRC), to fund the work necessary to break this unhelpful duopoly.
There really ought to be a solid local, national and international support network for M.E sufferers, rather than this patchwork quilt of admittedly laudable initiatives, which are so often under threat of extinction because of the inability of seriously ill organisers, with most knowledge and experience to share, to keep going because of relapses due to the illness itself and, all too often, disgraceful , destructive, internal squabbles or political infighting which has brought several groups, in different parts of the country, to their knees, leaving no local support for M.E sufferers.
Yours sincerely Dr John H Greensmith ME Free For All. org 04/10/09 Re: Playwright who always found the right words for his friends, Edinburgh Evening News, 10 April 2009 #1I doubt that Alan Lear, whom you describe as the “Playwright who always found the right words for his friends” (Edinburgh Evening News, 10 April 2009) would think you have found the right words to describe the illness, from which he suffered and has now died, at the unexpectedly early age of 55, as “his chronic fatigue syndrome”.
They are the wrong words to use to diagnose this dreadfully disabling neurological illness – look at how it wrecked his life and career – which is taking too many people, around the world – count them – to an early grave and continuing to use them as synonymous with M.E. (Myalgic Encephalomyelitis) is not helping to best treat those who are still living with M.E., which is much more than the mere tiredness that this impostor of an equivalent diagnosis implies.
Yours sincerely Dr John H Greensmith ME Free For All. org One way in which a real, seriously debilitating, illness can be ignored (Some illnesses can be ignored, Clovis News Journal, 9 April 2009) is by swallowing it up within a more generalised syndrome, which contains a variety of other illnesses, thus making it less likely to receive the individual attention of researchers that it needs to discover its cause, possible treatments and, ultimately, a cure.
Such is the case with M.E. (Myalgic Encephalomyelitis), often erroneously thought to be a chronic fatigue syndrome, which highlights tiredness as a typical symptom that indeed may sometimes affect everyone and, therefore, could be ignored as an genuine illness; but fatigue, as normally understood, is not routinely a principal symptom of M.E. which is a discrete neurological illness and should not be written off in this manner.
M.E. sufferers can't ignore the range of symptoms including overwhelming and omnipresent enervation, not refreshed by any amount of sleep, muscle pain, abnormally slow recovery after minuscule effort, cognitive dysfunction and dizziness, together with the social isolation this awful illness brings.
Sadly, largely invisible illnesses can be, and are, ignored by some doctors and researchers who, unlike the supportive ones, are unable to admit ignorance; but that doesn't make them any the less real and they won't go away until they are better understood by those who realise that they are real and should not be ignored by sneering ignoramuses.
Yours sincerely Dr John H Greensmith ME Free For All. org I hope Glenda Price never succumbs to ME or Chronic Fatigue, as it's sometimes erroneously called, or she would know that it is not something that can be ignored (Some illnesses can be ignored, Clovis News Journal, 9 April 2009). I should know as I haven't been able to ignore it for the past 13 years! Depressed MECharles Shepherd asks for an objective position to be taken on the aetiology of Myalgic Encephalomyelitis (ME) (Mind or body?, New Scientist. p.22, 4 April 2009). Why are those who support ME reluctant to accept a psychological basis in some cases?
In my experience, the response from a patient to such a suggestion is either to say "I'm not making it up", or to make a quick exit from the consulting room. Most of those who treat ME accept that symptoms can result from a number of different causes, including depression.
It is likely that in the survey Shepherd mentions, respondents are biased towards those who have not benefited from treatment. Shepherd makes much of the fact that more than half the respondents had found that Cognitive Behavioural Therapy and Graded Exercise Treatment was either unhelpful or made them worse. It would be interesting to know what proportion were made worse rather than simply not helped. Is it not worthwhile that the other half of the respondents might have been made better? There is, after all, no other treatment that has any effect.
Tony Waldron University College London 04/04/09 Re: M.E. Awareness Week Poster Design Competition, 4 April 2009Since a picture is worth a thousand words, we have decided to have a striking poster campaign to illustrate the largely invisible and, therefore, unknown devastating effects of the dreadfully disabling illness M.E. (Myalgic Encephalomyelitis) to be displayed during M.E. Awareness Week.
But, with less than a month to go (M.E. Awareness Week is 10 -16 May 2009), we haven't got a single poster design to choose from.
So, we have decided to launch an M.E. Awareness poster design competition. Any one of any age or ability, amateur or already established professional, may enter as many times as they like. If you know about M.E., you can decide the theme for yourself, or you can work with the themes of pain, isolation and perhaps, most important, the difference between public perception myths and the harsh reality of this illness; you can accept an unpaid commission from us, or just e-mail us to give you ideas to get you started. It can be in any style at all, such as cartoon, graffiti, stick men or traditional. Less naturally gifted people may use a computer package, or free clip art. Your poster may also feature a photograph of a person with M.E. It can be of any size, though A4 or A5 are recommended for convenience of electronic transmission and posting. Anything goes really. It just has to be eye-catching.
Bristol is our home turf but entries are invited from all over the place, so there may be some friendly regional rivalry. If yours is one of the newspapers running a feature about this competition, they may choose to award an extra prize for the best and publish a gallery of runners up, even after M.E. Awareness Week is over. We certainly will show them on our website.
It's a great chance to get your name on a poster and wait for the phone to ring from RADA (it could happen!), so why not get cracking now, over the Easter break. Go on, make a start, or e-mail us for the inspiration to get your creative juices flowing.
In anticipation of a bumper crop of entries, we are seeking some extra voluntary administrative help, even if only temporarily for this project and some footsloggers to make sure the winning posters get seen everywhere locally for maximum impact.
Finally, just as homelessness and poverty don't cease the 360-odd days after the focus of charity at Christmas time, we need help to represent people with M.E. the other 51 weeks of the year. We are based in Bristol but we already work with volunteers in all parts of the country via Skype. If you haven't already got Skype it is free and easy to use. We need all sorts of people - take a look at Our Team on the website. It's the willingness to help that is gold dust for us.
Send an e-mail to drjohngreensmith@mefreeforall.org with "Poster Competition", "Volunteering", or whatever else you'd like to say and let's make this the best M.E. Awareness Week ever.
Thank you very much. Best wishes Dr John H Greensmith ME Free For All. org You may - quite unintentionally, I am sure - be helping to perpetuate the lack of understanding which M.E. patients face by repeating opinions, in this article (ME patients face lack of understanding, Norwich Evening News, 3 April 2009), which have no scientific evidence to support them:
Although many researchers in the field including, it seems, these involved in this project at the University of East Anglia, may keep saying it, M.E. (Myalgic Encephalomyelitis) is not at all the same thing as Chronic Fatigue Syndrome but it is continuing to treat M.E. as though it is one of a mixed bag of illnesses, having a variety of physical and/or psychiatric causes, rather than as the discrete neurological illness, which it has been recognised as by the World Health Organisation since 1969, that is delaying progress towards finding a treatment towards a cure for M.E.
We know from common observation that M.E. never was 'Yuppie flu' but nor is Dr Fiona Poland's assertion that it mostly affects "disadvantaged" people any more accurate because M.E. affects both sexes, all age groups and social classes, all over the World.
The truth is that no one knows for sure, since thorough epidemiological and demographic studies studies have never been conducted because all the research money has been blown on two management techniques for a group of heterogeneous illnesses, which may not contain many M.E. patients at all and for whom one, Cognitive Behaviour Therapy (CBT) is ineffective and the other, Graded Exercise Treatment (GET) is potentially harmful.
Until this research priority changes, journalists will be handed stereotypes to pass on to an unenlightened public, who deserve better quality science for their lottery money.
Yours sincerely Dr John H Greensmith ME Free For All. org Myalgic Encephalomyelitis sufferers will remain poorly understood (ME patients face lack of understanding, Norwich Evening News, 3 April 2009), with no effective treatment, until biomedical research is properly funded. For over 20 years the lion's share of government research funding has gone to psychiatrists who, ignoring over 4,000 studies proving it is a physical illness, insist that M.E. is an 'abnormal illness belief'.
M.E. has been classified as a neurological illness by the World Health Organisation since 1969. It has never been classified as a mental disorder, yet the only NHS treatments available (totally useless Cognitive Behaviour Therapy and the graded exercise that all patient charities condemn as harmful) are psychological.
Mixing M.E. sufferers up with sufferers of other fatigue causing illnesses under the insulting umbrella term 'Chronic Fatigue Syndrome' and offering a 'one size fits all' treatment does no patient any favours. It is essential that funding to develop a diagnostic test for the discreet illness M.E. be made available.
M.E. devastates lives. A quarter of all M.E. sufferers are house or bed bound, some spending their lives in darkened room unable to talk, walk or swallow. Sufferers who have died of M.E. have been found at autopsy to have massive infections of their hearts, central nervous systems and muscles. Most sufferers never recover.
What a pity that the £500,000 could not have been spent on identifying the bacteria, viruses and parasites known by American researchers to be causing the illness ( Human Herpes 6A, Cryptostrongylus Pulmoni, Parvovirus B19, Epstein Barr, Lyme disease, etc.) and researching the widespread damage to the body that these infections have caused. Effective treatments could then be developed to each subgroup according to the infection, the overwhelming suffering ended, and M.E. patients returned to health.
Yours faithfully H.Patten Somerset When Dr Fiona Poland mentions that ME is misconceived as "Yuppie flu" and that it is more likely to "affect disadvantaged people ..." (ME patients face lack of understanding, Norwich Evening News, 3 April 2009), she adds to the misconceptions about ME, which know no barriers, whether they be geographical, financial or other.
ME victims don't start off disadvantaged. What does happen with ME is that sufferers usually end up disadvantaged because they lose their jobs and insurers and government agencies alike will do all in their power so as not to give them the benefits they are due and if the sufferer fights, he/she loses the shirt/blouse off his/her back in doing so. Been there, done that.
Josette Lincourt Montreal 04/02/09 Re: More help needed for people with ME, say Norfolk researchers, Eastern Daily Press, 2 April 2009 #1There would have been better odds of hitting the jackpot of giving M.E. sufferers the treatment they are missing out on (More help needed for people with ME, say Norfolk researchers, Eastern Daily Press, 2 April 2009) if some of the £500,000 Big Lottery money had gone towards trying to understand what treatment people with the discrete neurological illness M.E. (Myalgic Encephalomyelitis) actually need, instead of indiscriminately bundling them in with other patients who have a number of illnesses, with a variety of physical and/or psychiatric causes, and giving them Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET), even though the first is ineffective and the second potentially harmful because that's all that is available.
In the meantime, it is a lucky dip for M.E. sufferers, depending on where they live, hoping their number will come up with a doctor who realises that this is much more than just tiredness.
Yours sincerely Dr John H Greensmith ME Free For All. org 04/02/09 They taught me everything, That's Life!, Issue 13, 2 April 2009M.E. sufferer, Sarah Smith, explains why she's so lucky.
My mum Sandra, 51, hugged me tight. 'We're proud of you,' my dad Alan, also 51, said. I was 16, had just got my first job — something I never thought I'd do. I'd been diagnosed at nine with myalgic encephalopathy, ME. It meant I was always exhausted, suffered terrible muscle pain. Yet my parents hadn't let me give up. 'Let's go to the beach,' Mum, a hairdresser, would say. Anything to keep my mind active.
But I missed a lot of school. So when I was 14, Dad, a gas fitter, said he and Mum would teach me at home. They gave me homework, structured lessons in maths, history ... I learnt lots and they made me feel really proud of my achievements.
Now, this job in telesales was proof of their hard work. I soon settled in, did so well that six years on, I got my own flat. But when I was 26, Dad was diagnosed with bowel cancer. I was distraught.
He had the affected part of the bowel removed and I moved home for two weeks to help care for him. 'It's the least I can do,' I said.
But three months on, I developed painful sciatica, was forced to give up my treasured job. Once again. my parents were there for me. Dad was in remission but insisted on coming over with Mum to help do my cooking and cleaning.
Now, a year later, Dad has had the all-clear and my pain is subsiding. My parents are my best friends. Without them, I wouldn't be half the woman I am today.
Sarah Smith, 27 Moreton, Merseyside 04/09/09 "I walked off my ME", SHE Magazine, 1 April 2009Suzanne Baxter, 44, a site manager, lives in Blackpool with her husband Chris and children Guy 21, and Faye, 19.
"In 1998 I contracted a virus and it took me a year to get over it. Afterwards, I began to lose my memory, I had violent headaches and felt constantly exhausted. I was diagnosed with ME and my family had to do everything for me.
Then, in 2005, I started walking. At first just going round the block I slowly built up my stamina and distance. The effect was amazing and, within a year, I was back at work and walking three miles a day. In 2007 I climbed Snowdon, and a year later I did the 26-mile MoonWalk!
Walking gave me something to aim for in my darkest days and when I felt my health returning, it was so rewarding."
•Suzanne took part in the Moon Walk London 2008 to raise money for the charity Walk the Walk
Suzanne Baxter Blackpool 04/09/09 Re: "I walked off my ME", SHE Magazine, 1 April 2009 #1No one has a cure for M.E. (Myalgic Encephalomyelitis), or hundreds of thousands of people in the UK and millions around the world, would not remain ill with it for decades. There are some claims that controversial, unproven, often expensive, treatments may help, which are unfounded and sometimes ("I walked off my ME", SHE Magazine, 1 April 2009), downright dangerous.
This Research Psychologist and veteran sufferer of 21 years can find no trustworthy scientific evidence, in which methodology, statistical analysis and conclusions cannot be challenged as flawed, for the enduring efficacy of any alternative treatment, or radical therapy, nor for one of the two management techniques, Cognitive Behaviour Therapy (CBT), offered on the NHS.
Most worryingly, Graded Exercise Treatment (GET) remains widely recommended for people with M.E., despite all the evidence in this country, Belgium, Japan and the US, some of it conducted by the same people who advocate and/or continue to practise it, showing that a majority are worse after it, some irrecoverably so.
Since it is better to have no treatment at all than one which does you no good, or one which may do you harm, this organisation suggests that services are suspended pending reliable research, that GPs review the literature before referring and, for the time being at least, M.E. patients decline a referral, avoid Suzanne Baxter's advice and pass on ours.
Yours sincerely Dr John H Greensmith ME Free For All. org |
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