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25% Group/Stonebird response to “Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial”
Greg Crowhurst, Simon Lawrence
People with Severe ME are rightly outraged by the latest in a long line of misrepresentative articles suggesting that their disease is a fatigue condition.
People are suffering and have been suffering for decades as a result of the misdirection of ME away from a WHO defined neurological disease.(Hooper et al 2007) It is surely time for this to end.
The so-called "psychiatric lobby" have for many years perpetuated the untruth that ME is a "non disease", a somatoform disorder, maintained by abnormal or unhelpful illness beliefs, condemning patients to decades of neglect, abuse, misunderstanding and mistreatment. It is time that Myalgic Encephalomyelitis is recognised as the serious neurological disease it is and separated once and for all from a sea of ill-defined, vague, misrepresentative fatigue, under psychiatric influence.
The latest paper, (Chalder et al 2015) grotesquely reported in the media, has caused immense distress; echoed around the world the article is given far more authority than it deserves, thus perpetuating a global knock on effect, that will have a devastating negative influence especially for the most ill.
Its central “morally indefensible (Weir 2015)” premise that ME patients are afraid of activity and would benefit from Graded Exercise Therapy and Cognitive Behaviour Therapy, to cure their phobia, ignores the evidence that people with ME are physically harmed by exercise (Crowhurst 2010, Kindlon 2011, VanNess 2014).
The key issue here is the wide and loose definition used to identify the research cohort and the misuse of the name ME to mean CFS, moving the focus and ground away from ME, a neurological disease, to Chronic Fatigue, a mental health condition. Whether ME patients are included or not, within the patient cohort, the potential for harm from wrong treatment is huge. Patients with Myalgic Encephalomyelitis need protecting from the dangers of misinterpretation.
The 25% Severe ME Group and Stonebird call for psychiatry to be removed from first line involvement in ME, for a much clearer definition to be applied across the board to separate ME from CFS, for the development of a biomedical, not a psychosocial pathway and for high end Myalgic Encephalomyelitis not “CFS” research .
A whole new approach to addressing the medical needs of people with Severe ME, which recognises the complexity of hypersensitivity, must be developed, alongside a long overdue medical centre of excellence.
Chalder T, Goldsmith KA, White PD, Sharpe M, Pickles AR.
Rehabilitative therapies for chronic fatigue syndrome: a secondary
mediation analysis of the PACE trial. Lancet Psychiatry 14 Jan 2015,
Crowhurst G (2010) 101 Good Reasons:
Why it is wrong to provide CBT and GET to ME Patients.
Hooper M, Marshall E, Williams M (2007) CORPORATE COLLUSION? http://www.meactionuk.org.uk/Corporate_Collusion_2.htm
Kindlon T (2011) Reporting of Harms Associated with Graded Exercise Therapy and Cognitive
Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Bulletin of the IACFS/ME. 2011;19(2): 59-111 http://www.iacfsme.org/LinkClick.aspx…
VanNess M (2014) 'Exercise and ME/CFS' at Bristol Watershed. Part One.https://www.youtube.com/watch?v=q_cnva7zyKM
Severe ME Awareness Day, 8th August 2014 - ME Cover up!
If you want to raise awareness of the cover up of our serious neurological disease, please share a photo with us.
If you can, get a photo taken of yourself with a sheet over, in whatever way can be tolerated or managed, whether it is a photo in bed, a wheelchair, sitting, standing, it does not matter.
If you are not able to tolerate a sheet over you, get someone else to represent you, if possible.
The important thing is to capture the image of being covered up.
We want to create a powerful visual impact to shock and shame and show for August 8th, Severe Myalgic Encephalomyelitis Day!
We suggest that you also include a short caption to go along with the photo (this might be to illustrate your invisibility as a sufferer or to illustrate a political point or both). All photos must be submitted by email to email@example.com by no later than 30th June. These photos will then be placed on the website for Severe Myalgic Encephalomyelitis Day 2014 and campaign documents (such as an MP Letter, Press Release will be enclosed with your summer Quarterly.
Exercise & ME/CFS event at Bristol Watershed.
Presentations from the “Exercise and ME/CFS” evening in Bristol on Feb 5th at the Watershed – with Prof Mark VanNess, Dr Nigel Speight and Erinna Bowman following a screening of “Voices from the Shadows”.
More information about the “Exercise and ME/CFS; the evidence” event is in this post.
Prof Mark VanNess from the Workwell Foundation explains how damaging aerobic exercise can be for patients with ME/CFS. Their 2 day testing protocol demonstrates an astonishing post exertional amplification of symptoms in ME patients; a hallmark symptom of ME. This damage to the aerobic energy system means that it is utterly counter productive to try to use aerobic exercise to improve health in these patients.
The evidence from their research is so unexpected and contrary to accepted views of exercise and graded exercise, both in ME and in other illnesses, that many people actually find it difficult to hear and take on-board what he is saying. Fortunately you can go over what he says repeatedly and follow up the links on the Workwell Foundation website to watch or read other information.
Interestingly, he reflects on comments made in the film, explaining that these are consistent with their evidence from cardiopulmonary testing. He also explains how patients can try to find a more appropriate way of managing their activities of daily living and exercise, by trying to avoid causing any worsening of symptoms and so allowing their bodies a better chance of healing. He explains about analeptic exercise, which means restorative; not causing relapse!
Dr Nigel Speight talks about some of the kinds of cases where he is asked to try to protect children from being mistreated by professionals who are misinformed about ME, or abdicating responsibility. He is the medical advisor or paediatric medical advisor for 5 charities, including the ME Association, TYMES Trust and significantly the 25 % Group who have been unable to find anyone more suitable to help in severe cases. He, more than anyone in this country, sees the worst cases; the cases where people are most ill and the cases where children are being mistreated and families threatened with having their ill children taken from them or forced to under go harmful treatment programmes. This video shows the anger and frustration with the current state of affairs that such scenarios evoke in a caring paediatrician. He describes his supportive and empowering management approach to the illness, which recognises that children are suffering a severe physical illness. Another video with Dr Nigel Speight talking to Rob Wijbenga, which Josh filmed last summer, can be seen here.
Erinna Bowman is part of the Cure ME team at the London School of Hygiene and Tropical Medicine. As well as explaining some back ground information about their work she covered some of the essential issue that have contributed to the confusion around the diagnosis and treatment of patients revealed by the previous speakers. She mentioned the wide variety of definitions and the wide predictions of prevalence resulting from such varied definitions. Clearly CFS to Mark VanNess is not the same illness described as CFS here! The Cure ME Team is obviously working with quite tight research criteria in comparison with the general NHS and NICE definition. She explains about their new research projects funded by the USA’s NHI which will involve immunological, virological and gene expression analyses and describes the previous work on the biobank and its further development as a result of the new funding.
Erinna Bowman, Prof Mark VanNess and Dr Nigel Speight answered questions, chaired by Sue Waddle
Bristol Watershed ‘Exercise and ME/CFS: the evidence’ event.
This event was hosted by Bristol North Fibro & ME/CFS Support Group with much appreciated funding from the Quartet Foundation to assist with costs. Help was also given by the ME Association and ME Research UK.
Important Bristol event on Feb 5th to help educate people about how damaging the wrong kinds of exercise can be for people with ME and how understanding this process can help you manage the illness better.
"Exercise and ME/CFS - the evidence" - with a speaker from the Workwell Foundation in the USA (previously Pacific Fatigue Lab), Dr Nigel Speight, Erinna Bowman from the Biobank, a 30 min. version of the film 'Voices from the Shadows' and Sue Waddle from MERUK will chair a Q&A. This would be a great event to get relatives, your GP or other relevant professionals to go to - or to give them the info about it.
See the film website - flier and further information www.voicesfromtheshadowsfilm.co.uk
or contact Natalie on 0117 9733 231 or email firstname.lastname@example.org
STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC)
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
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.”
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.
Media Mischief Summer 2011
25% ME Group & Stonebird
Submission re: DSM-V and ME/CFS JUNE 2011
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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