THE ONE CLICK GROUP
Email: firstname.lastname@example.org 20 May 2004
THE UK ME/CFS CHARITIES – WHOM DO THEY REPRESENT?
We call for an independent charity to be formed to represent the interests of adult ME/CFS ICD.10 G93.3 patients in the UK
The Marketing Strategy
The Myalgic Encephalopathy Association (MEA)
The Future Charity – For Your Consideration
Are selected UK charities attempting to represent the interests of the masses with idiopathic chronic fatigue F 48 or are they attempting to represent sufferers of ME/CFS ICD-10 G93.3? Or both?
Chronic fatigue F 48 is a mental disorder whereas ME/CFS ICD-10 G93.3 is a neurological disease, recognised and classified as such by the World Health Organisation and by the UK Government. The former is a condition; the latter is an organic disease. The former can often be treated effectively with psychosocial management regimes and treatments. For the latter, these psychosocial interventions have been shown in study after study to make ME/CFS sufferers comprehensively worse.
Instead of recognising this problem and addressing the issue as it is their duty to do, selected of the UK charities have adopted a marketing strategy designed to increase their numbers and revenue that has backfired badly.
In 2003 the Canadian ME/CFS Clinical Working Case Definition, Diagnostic and Treatment Protocols was published. Produced by an international expert panel of eleven physicians who have between them treated/diagnosed over 20,000 ME/CFS sufferers worldwide, these criteria represent the breakthrough that our global ME/CFS community has been waiting for.
See here: http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Canadian%20Definition%20of%20ME-CFS.pdf
Despite repeated ME/CFS community request, at least two ME/CFS charities, Action for ME (AfME) and the Myalgic Encephalopathy Association (MEA) who lay claim to represent ME/CFS sufferers nationwide, have refused to adopt the Canadian Definition of ME/CFS. They are thus refusing to separate out the masses that suffer
from the mental disorder idiopathic chronic fatigue F 48 from those who suffer from the neurological disease ME/CFS ICD.10 G93.3 amongst their members/subscribers and the wider ME/CFS community.
AfME and the MEA have gone firmly down the psychosocial route in recent years in regard to ME/CFS. They have done this for three primary reasons:
1. Income. There are far more people who suffer from idiopathic chronic fatigue F 48 (mental disorder) than there are those who suffer from ME/CFS ICD.10 G93.3 (neurological disease). Ergo if you attempt to appeal to all, you gain more subscription income. The fact that it is absolutely impossible to simultaneously represent patients who suffer from a mental disorder and patients who suffer from a neurological disease in precisely the same way and by promotion of the same treatments is an horrific piece of sleight of hand that these charities have either prayed that the ME/CFS community will simply ignore or not notice.
2. Influence. The distorted AfME/MEA thinking goes that if you attempt to obtain many members – despite the fact that your subscribers/members may belong to two entirely disparate disease categories altogether – you can obtain influence and income by government grant. Since the psychiatric lobby UK is currently the only sector of medicine that is receiving monies in regard to treatment of ME/CFS, the charities have elected to jump on to this utterly appalling bandwagon that has been constructed by fraudulent design.
3. Position. Since the psychiatric lobby UK is the organisation currently calling the catastrophically damaging financial shots in relation to ME/CFS, selected charities have elected to join them by stance, by word and by deed.
For the last fifteen years or more, the psychiatric lobby has held sway in the UK over ME/CFS. Professor Simon Wessely, leader of the psychiatric lobby UK, has gone on public record many times and stated that ME/CFS is merely an erroneous belief system/mental disorder and not an organic disease at all.
Professor Wessely has gone even further than this in his role with the WHO Collaborating Centre Kings College and has had ME/CFS re-classified in the UK from a neurological disease to a mental disorder against international consensus.
Professor Wessely and his colleagues have been recently forced by the WHO Headquarters, Geneva, to correct this disastrous mal classification that has affected the medical treatment, the payment of disability benefits, the payment of insurance, the provision of Home Education for children and domiciliary and respite care amongst so many other issues too lengthy to list. It is only through extensive ME/CFS community hard work by many that this abortion of an injustice has been finally corrected. At no time did either AfME or the MEA attempt to assist the ME/CFS community in their endeavours in regard to the correction of this classification until the ME/CFS community itself had done all the hard work.
Whereas the actions of these charities would arguably benefit the masses that suffer from idiopathic chronic fatigue F 48, these actions have been terribly damaging for ME/CFS sufferers. Since ME/CFS sufferers are the very group of patients that these charities are supposed to represent, this has been the grossest of betrayals with catastrophic consequences for ME/CFS patients.
We need to look at how the recent actions of these charities have done so much damage to ME/CFS sufferers, why we are as a community in the parlous state that we find ourselves in today and what we can do about it. He who pays the piper calls the tune. And despite the incredibly twisted belief systems of some of these charities, the ME/CFS community is the payer of the piper and indeed it is us that should be calling the tune.
Instead of recognising the problem that attempting to simultaneously act for two entirely different and separate patient communities creates, some of these charities have elected to force the ‘one shoe fits all sizes’ approach. And it is precisely their refusal to put the Canadian Definition of ME/CFS into practice that highlights this issue so sharply. If these charities had the interests of ME/CFS sufferers at heart, WHY would they refuse to adopt them? The answer is simple. Their relationship with the psychiatric lobby would disintegrate and their finances would be damaged still further.
Action for ME (AfME)
In order for this policy abomination to take place without hindrance, AfME has ensured that it does not hold an Annual General Meeting that involves its subscribers for nine years, since 1996. AfME has utterly disenfranchised the very ME/CFS patients that pay for its upkeep – inclusive of the upkeep of Mr. Clark, the AfME CEO, who enjoys an annual salary in excess of £50,000 per annum plus.
AfME has attempted to stifle all open debate over the ME/CFS issue. It has also elected to promote, sanction and sell direct to the public the psychosocial treatments and management regimes that have so badly damaged so many sufferers of ME/CFS.
For full details of the actions of this most discredited charity, see The AfME Dossier 2004 here:
AfME has refused to date to answer ANY of the twenty-one questions posed by their subscribers and the wider ME/CFS community in The AfME Dossier 2004.
AfME has also inserted an employee into the Department of Health Secretariat during the key build-up period prior to the funding and announcement for the newly operational ME/CFS centres. AfME has done everything in its power to co-operate and collude with the psychiatric lobby to the virtual exclusion of most other activities.
AfME has obtained government grants for its sanction, actions and collusion in regard to the psychosocial trials of ME/CFS as approved and funded by the Medical Research Council (MRC). What is so utterly shocking is that evidence has been uncovered that conclusively proves that all ME/CFS sufferers will be deliberately excluded from the PACE trial by use of the Oxford criteria for *entry* to this trial. The Oxford criteria by definition exclude all sufferers of a neurological brain disease, hence all ME/CFS sufferers. AfME knows this full well.
See The PACE Report plus The PACE Trial Identifier written by the psychiatrists here:
To say that this is a scandal and a disgrace on the part of both AfME and the MRC is an understatement of gargantuan proportions. Combination funding of some £11.1 million pounds sterling of British taxpayers money in relation to the setting up of these newly operational ME/CFS centres and these psychosocial trials is set to be wasted on this psychosocial approach that will do damage to so many who suffer from ME/CFS.
The Myalgic Encephalopathy Association (MEA)
This discredited charity has lost all the confidence of many of its members. In December 2003 the MEA AGM took place in which the Chairman, Chief Executive and other Trustees resigned. Dr. Charles Shepherd - instigator and prime mover in regard to this MEA palace revolution - promised the ME/CFS community that if he were elected to the Board of Trustees, the damaging secrecy cult that had been the watchword of the MEA for so many years would cease. That honest, open and transparent dealing by this charity would take place.
None of the legitimate and serious information required has been forthcoming. Moreover, the newly elected MEA Chairman resigned within weeks of taking office. In his resignation statement, he announced his concerns over the finances of this organisation and Dr. Shepherd’s involvement with Professor Wessely amongst other issues. For the Chairman’s resignation statement, see here:
As Trustee, Medical Advisor and also Company Secretary, Dr. Shepherd is the figurehead of the MEA. In this figurehead role, Dr. Shepherd has been legitimately questioned over the stance, policies and workings of this charity. For those questions that he finds difficult such the issue of whether the MEA is solvent or insolvent and whether it is trading legally or illegally, he refuses to provide the evidence required.
Questions over the financial viability of this charity remain unanswered. The Treasurer has also resigned, as has one of the Patrons.
Subsequent to the formation of the new MEA Board of Trustees in December 2003, the MEA has undertaken two high profile public initiatives.
1. The collection of signatures for an ME/CFS Petition. Whereas this action has merit, it is in fact the historical case that Petitions – no matter how well intentioned – have changed nothing in relation to ME/CFS. They are handed in to government and there the matter generally rests as is witnessed by both the Fort Petition and the RiME Petition. Is it possible that the MEA is cynically taking this action to look busy for the sake of it rather than choosing to address the very serious issues facing the UK ME/CFS community today? For example issues such the constant psychologising of the organic illness ME/CFS, the denial by some psychiatrists and others over the very term ME/CFS together with its neurological classification, the fact that the very name of this charity - the Myalgic Encephalopathy Association - does not conform to the name of this disease as specified by the UK government and indeed the long term viability or otherwise of the MEA itself amongst many other concerns.
2. The attempt to strip ME/CFS sufferers of their patient protection and rights by getting the neurological disease ME/CFS ICD-10 G93.3 renamed as Myalgic Encephalopathy that has no disease classification anywhere in the world. This action has been the personal initiative of Dr. Charles Shepherd, figurehead and Medical Adviser of the MEA and was taken up by the psychiatric lobby with high delight. It was only when the ME/CFS people’s champion, the Countess of Mar, stepped in and obtained confirmation from Lord Warner, Health Minister, that ME/CFS ICD.10 G93.3 was the term and classification that was to be used in the UK that this Shepherd/MEA initiative was halted in its tracks.
These are the only two high profile initiatives that the MEA has conducted since December 2003.
Subsequently and in public, Dr. Shepherd of the MEA has issued statements that that threaten that if the ME/CFS community continues to adopt and promote the neurological classification of ME/CFS, clinicians and researchers will not wish to enter the field and further difficulties will occur with the insurance companies.
It is also the case that the MEA as embodied by its Medical Adviser in the form of Dr. Charles Shepherd, has known for some time that by the use of the Oxford criteria for
*entry* to the PACE Trial, all ME/CFS sufferers are to be deliberately excluded. The Oxford criteria specifically exclude those suffering from any neurological disease. This represents scientific fraud at the highest of levels since it is ME/CFS patients that are supposed to be studied in this trial and monies have been allocated for this specific group of patients. At no time has the MEA addressed this issue that matters so much to all ME/CFS sufferers in the UK.
It is quite clearly the case that the MEA are not representing the issues and concerns of ME/CFS sufferers in any meaningful way.
Whenever an ME/CFS story is given to the media, it is a journalist’s automatic professional reaction to turn to the ME/CFS charities for comment and story verification.
In the past and now in the present, this has caused many difficulties. For example the involvement of the children’s charity the Association of Young ME sufferers (AYME) in the article on ME/CFS children in the Observer and the Daily Telegraph, to name but two recent media stories. In the first instance AYME refused to co-operate at all. And in the second, AYME elected to promote the damaging psychosocial treatments that have comprehensively been shown to make many ME/CFS children so ill that some of them have remained in wheelchairs for years. The promotion by this charity of these psychosocial treatments is little short of remarkable since as is admitted by the Chief Medical Officer’s Working Group Report, none of these treatments have been trialled on ME/CFS children at all.
The MEA’s recent attempt to manipulate the media has involved persuading national newspaper Health Editors to adopt the term Myalgic Encephalopathy that has no disease classification whatsoever thus stripping ME/CFS patients of their patient protection and rights and to attempt to get the Department of Health to do the same in relation to press releases issued on ME/CFS.
In support of its psychosocial stance, AfME has used Lord Puttnam in the Guardian to promote its psychosocial regimes from which it is obtaining money by government grant to do so. As a Patron of AfME, Lord Puttnam has delivered a great disservice to the ME/CFS community by trivialising this disease very effectively.
It is quite clear that whilst these charities take the actions that they do in relation to the media, the public perception and awareness of the reality of ME/CFS will remain highly twisted and flawed.
It is unconscionable that some of us in our community actually pay these people money that many can ill afford to liaise with the media in this way on our behalf.
It is abundantly clear that selected of the UK charities are seeking to place the sufferers of chronic fatigue F 48 (mental disorder) and the sufferers of ME/CFS ICD.10 G93.3 (neurological disease) under the same umbrella. This is being done in order to attempt to obtain maximum income, influence and position.
The comprehensive refusal by some of these organisations to adopt the Canadian Definition of ME/CFS and put this into common usage that would separate out those with chronic fatigue from those who suffer from ME/CFS provides the stark, concrete and incontrovertible evidence.
Whilst the ME/CFS community UK permits this strategy to continue, we will have no hope whatsoever of obtaining the funds required to research the biomedical aspects of ME/CFS. We will be incorrectly represented at the highest levels in government and we will continue to be traduced, abused and betrayed by selected of the very organisations whose duty it is to promote our interests and whom we pay for.
By no means all of the charities that represent sufferers of ME/CFS in the UK are causing such hardship and damage. Organisations that carry out excellent work for sufferers such as The Young ME Sufferers Trust (Tymes Trust) and the 25% group, amongst others, are to be commended and roundly applauded for their efforts and their sterling work.
On 19 February 2004, we wrote an article entitled ‘The Future Charity – For Your Consideration’ published in The One Click Group archives.
It has now clearly become a matter of urgency that this matter be addressed to the full.
The ME/CFS ICD.10 G93.3 community UK badly needs a national adult patient focussed organisation to represent our interests.
What we had hoped subsequent to the Myalgic `Encephalopathy' Association (MEA) Annual General Meeting in December 2003 is that the MEA would be it. That they would deliver their strategy vision of what we need in the UK. That there would be clear blue water evinced between the roundly discredited psychosocial charity Action for ME (AfME) and the MEA. Not only has this strategic vision failed to be delivered by the MEA, but also double-dealings behind the scenes are clearly as rampant as ever. As a community we need to focus on our needs, what we require and what we are prepared to pay for.
Here is an agenda that we set out for your consideration. We would ask other members of the ME/CFS community to make comment. To add items that you consider to be important. To delete others that you consider not relevant. Here are our suggestions in no particular order of importance.
We need a charity that:
· Adheres to and promotes the term and classification of Myalgic Encephalomyelitis /Chronic Fatigue Syndrome as a neurological disease as classified under ICD-10 G93.3 by the World Health Organisation, Geneva.
· Adopts the Canadian Guidelines, Treatments and Protocols as produced by an international expert panel of eleven physicians that have between them treated/diagnosed over 20,000 sufferers worldwide.
· Produces a sustained and orchestrated campaign to deliver the message to the Government, to the Department of Health, to the National Health Service, to the Medical Research Council, to the psychiatric lobby, to Social Services, to the Education Authorities, to the media and all opinion formers that ME/CFS is not a mental disorder/somatization disorder or erroneous belief system as propounded by the psychiatric lobby for years on end, but a neurological illness.
· Prioritises the need for aetiological and biomedical research to be undertaken in regard to this disease; research to attempt to ascertain the multi-factoral causes thus leading to diagnostic bio- markers, a soundly researched care path to follow and in time, we hope, a cure.
· Lobbies the Government in relation to ease of provision of the Benefits that so many sufferers of this neurological illness need to survive and provides practical help to sufferers in relation to the obtaining of same.
· Refuses to collude with the psychiatric lobby that has done so much harm to sufferers of the neurological disease ME/CFS for years without number.
· Works towards the provision of domiciliary care and support for sufferers.
· Mounts a sustained information campaign regarding this disease such that diagnosis is definitively obtained within three months for children and within six months for adults. (NB. For my son who contracted ME at the age of 10, this process took eighteen months and it was sheer agony to obtain that diagnosis. If I had obtained that diagnosis in the first three months of the onset of this disease, I would have done things differently and things might not be as they are with us today).
· Focuses on those sufferers most severely afflicted by ME/CFS and attempts to meet their needs that are so often ridiculed and ignored by the very professionals charged with a duty of care for them; and ensures that those most severely afflicted are included as a matter of priority into all research studies of this disease.
· Works with other organisations in the field so that the incidences of children being forcibly removed from their families because they have the neurological illness ME/CFS are completely eradicated.
· Conducts a strategic, proactive, co-ordinated and targeted media campaign that highlights the suffering caused by the neurological illness ME/CFS and what needs to be done for sufferers in terms of care, research and understanding; and is swift in cogent rebuttal of damaging stories on this disease as and when they occur; a media campaign that speaks with one voice and changes hearts and minds.
· Liaises with government and the health service at the highest levels to promote the interests of ME/CFS sufferers.
· Works closely with Local ME Groups around the UK and provides support in terms of collaboration, information and, in time, possibly finance.
· Liaises with other charities and organisations in the field such as Tymes Trust, MERGE, RiME, the 25% Group et al such that common cause is made for sufferers of all ages, nationwide.
· Liaises with international organisations worldwide in terms of research being undertaken in other countries and treatment programmes.
· Retains a Medical Adviser/Advisers who adhere to the core beliefs of this organisation and act and behave accordingly.
· Is accountable and transparent in all its dealing with its members and the ME/CFS community in general.
Doubtless there are items that could be added and we leave it up to you as the ME/CFS community to comment.
This is the type of charity activity that we would like to see. The above is not rocket science. It is pure common sense. Moreover, this is the way in which reputable disease charities generally strive to work.
It is a complete and utter scandal that selected of the charities that currently take the money of adult sufferers in the UK have not adhered to the principles set out above. That secrecy, lack of transparency and double-dealings have been their watchwords.
THE ONE CLICK GROUP
2 May 2004