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STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC)
MAY 2013
The 25% ME Group is the only UK charity representing those who are severely affected with Myalgic Encephalomyelitis, a World Health Organization ( ICD10.9.3) classified disease, recognised by the UK Government as neurological. We subscribe to the use of the International Consensus Criteria (ICC) to clearly identify and separate ME from CFS, in order to ensure that ME is respected, treated and researched as a serious neurological disease impacting upon multiple systems of the body.
Therefore we cannot support nor validate the recently created CFS/ME Research Collaborative charter (CMRC) since, in our opinion it is an unacceptable waste of precious research funds, accommodating a range of research across a wide and vague criteria range not specific to ME. The CMRC, in our opinion, is more likely to prolong the current state of confusion rather than bring about much needed medical research or clarity.
Under the umbrella term “CFS/ME”, so often used to mean Chronic Fatigue (CF), leading to the mistreatment of people with ME; the CMRC does not and cannot represent or safeguard the needs of people with Severe ME.
It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for Myalgic Encephalomyelitis and for people with Myalgic Encephalomyelitis to be used for CF research.
Without the separation of ME from CFS and particularly Chronic Fatigue, the 25% ME Group fears there will continue to be misdiagnosis, misrepresentation and negation of Myalgic Encephalomyelitis alongside the inappropriate perpetuation of psychological therapies charading as treatment, that, as our research has shown, does great harm to our members.
The 25% ME Group supports the need for medical research, using specific criteria to safely identify Myalgic Encephalomyelitis, so that ME can be studied and identified accurately in research; this will not come about through, non ICC-based research into vague “CFS/ME”.
For these reasons, the 25% ME Group, along with other concerned ME charities (ie, Tymes Trust, IiME and Grace Charity for ME) wholeheartedly cannot support the CFS/ME Research Collaborative charter.
The 25% ME Group
www.25megroup.org
Dr Elizabeth Dowsett
19th September 1920 - 14th June 2012
A True Hero
By Simon Lawrence, 25% ME Group
We hear every day of people who do amazing things and who are portrayed as heroes for their actions. We also hear of heroic characters in films, novels, comic books and the like.
However, I feel certain that many of you within the ME community, when hearing the sad news of Dr Elizabeth (Betty) Dowsett’s death, will no doubt remember her as someone who truly deserved the title of hero.
She was someone who was relentlessly courageous in fighting the establishment on their stance of ME. She was sympathetic and empathetic to all who contacted her for help and support. She was someone who did not seek glory or try to make a name for herself in all that she did for others but simply did it because, as a doctor and, more importantly, as a human being, she felt it was her duty to help and, indeed, took great pleasure in helping people with this disease.
Over the decades she has helped in countless different ways, many thousands of people throughout the world. Many knew and thought of her as a personal friend because she was so warm and caring in all her dealings and treatment of people. She cared, showed empathy and loved people and she fought tirelessly to try to put an end to the injustice and mistreatment of people with ME.
She was one of the last remaining of the group of doctors from the Ramsay era who believed in ME as it really is, unlike today where we have all sorts of theories and scandalous activities that are truly harming people with ME. People are dying of ME and people are left paralysed by ME. Dr Betty Dowsett was someone who was truly upset about this and who worked day and night to help change the situation and even fought in the face of the establishment and other ME organisations that she felt were “dumping down” ME.
In a world where we are so often left to suffer and be denigrated as ME sufferers, it was refreshing to meet someone who really did care and, at the same time, who never sought monetary gain from her services or some selfish recognition for doing what she felt was right.
Betty you were not just a personal friend, and someone who was passionate about what you believed was right, but you were also a true hero and angel sent by God.
Thank you for all you did for me and for many people throughout the world.
You will be greatly missed and will forever remain in our hearts and minds.
Dr Dowsett’s family wish for any donations to be sent to the ME Charity of choice.
For those wishing to send cards these can be sent to the family, Mr & Mrs Johnson 3,Birch Trees Road, Great Shelford Cambridge CB22 5AW
(please do not include a donation in the card)
Work Capability Assessments harm patients and should be scrapped, say GPs
(issued Wednesday 23 May 2012)
Family doctors at the annual GP conference1 being held today (Wednesday 23 May 2012) in Liverpool have called for an end to the work capability assessment2 because of the harm it does to vulnerable patients. The doctors, who represent GPs from across the UK, say it should be replaced with a more vigorous and safe process which takes into account the needs of long term sick and disabled patients.
Dr Andrew Holden, a GP from Petersfield in Hampshire, told the conference that the computer-based system was unable to differentiate between people who genuinely need to be on incapacity benefit and those who don’t:
“Since the system was introduced in 2008, people with terminal cancer have been found fit to work, people with mental health problems have complained their condition is not taken seriously and people with complex illnesses say that the tick-box system is not able to cope with the nuances of their problems.
“The computer-based assessments are carried out by a healthcare professional but one not necessarily trained in the field of the patient’s disability, which is particularly important when it comes to mental health issues.”
Dr Laurence Buckman, Chairman of the BMA’s GPs Committee, said:
“When forty percent of appeals against the assessments are successful at tribunal hearings something is clearly very wrong with the system. Being in work is good for people’s overall health and well-being, but GPs are seeing too many patients who genuinely need to be on incapacity benefit coming in very concerned and confused by the system. It’s not fair on these patients but it could also have a wider impact as well – having a lower income may lead to people having a poorer quality of health and could therefore increase health inequalities for our nation as a whole. The government needs to look again at the whole assessment process and replace it with one that is fit for purpose.”
Ends
1. The annual GP conference is known as the Local Medical Committees (LMCs) conference. LMCs are statutory bodies which represent GPs locally. The BMA’s General Practitioners Committee organises the annual LMCs conference and represents family doctors at national level.
2. The Work Capability Assessment is the main assessment for people who want to claim Employment and Support Allowance.
The motion that was passed is as follows:
That conference, in respect of work capability assessments (WCA) as performed by ATOS Healthcare, believes that the:
i. inadequate computer based assessments that are used have little regard to the nature or complexity of the needs of long term sick and disabled persons
ii. WCA should end with immediate effect and be replaced with a rigorous and safe system that does not cause avoidable harm to some of the weakest and most vulnerable in society
Voices from the Shadows
This film is a deeply moving and compelling film bearing witness to hidden and forgotten lives: the ‘voices from the shadows’ of those suffering from ME, particularly children and young adults, whose lives are passing by, invisible to the public, physically very severely ill, and frequently neglected or abused by professionals in the UK.
Voices from the Shadows won “Audience Favorite International Documentary Award” at its world premiere at Mill Valley, California USA. The UK premieres were in December 2011 in Norwich and London
Contributors to the film include Dr Nigel Speight and Professor Malcolm Hooper, both of whom are medical advisors to the 25% ME Group.
‘The film will disabuse the viewer of any false notions that they might have had about this illness, and replace it with known facts and reality. “Voices from the Shadows” is a labor of love. It strikes from the heart – to the heart. Everyone who has an interest in this illness should see this film – from beginning to end’ Prof Chris Cairns
‘We’ve spent years working on this project and hope that you all can help with using this film as a tool to educate others – by giving copies to doctors, MPs and other relevant professionals as well as friends and family with whom you wish to share this film about severe ME.’ Natalie Boulton and Josh Biggs
DVDs are now available to order online, for personal and domestic use (without public screening rights) cost £6 (plus flat rate p&p). These DVDs are at a minimum cost for individuals to buy for themselves, their friends and family and to give to professionals to view privately.
http://voicesfromtheshadowsfilm.co.uk/
Media Mischief Summer 2011
25% ME Group & Stonebird
Submission re: DSM-V and ME/CFS JUNE 2011
KAY GILDERDALE
ONE LAST GOODBYE
Sometimes only a mother’s love can help end the pain
Published by Ebury Press on 14th April 2011, £6.99 paperback origina
Launch of New 25% ME Website
We are proud to annouonce the launch of the new Group website, which has been made possible through funding from Awards for All Scotland.
We have sought to make it more user friendly and interactive, with menu navigation that will hopefully help the user find the information that they require, much more easily and quickly.
We have also made a brand new area, which will be a Members Only Area. On signing up and logging on, members will be able to access material that has usually had to be sent out from the office on request. This includes replacement Contact Lists, Full Newsletters - up to now only Extracts hact been available, but now you can access and download them - FREE OF CHARGE.
Now, members will also be able to change and update their contact list details online.
We also plan to have a forum going very soon (depending on volunteers), which will be a 'safe' environment for members to interact with each other, get information and generally chat together.
Also information about Group activities and services will also be available within the members area, so all members will be able to quickly get the information that they require.
We sincerely hope that that new website, with its new layout and functionality and additional features for members, will be of great benefit.
Please give us your feed back on the new site and how we might even improve it in the future for the benefit of you and many other users who browse our website.
Thank you to everyone who has been involved in the development and testing of the site.
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