A proposal for ME Action: a commitment to evidence-based medicine

Jonathan Edwards said:
I think it may be the way around. All advocacy groups are pretty much agreed that treatments like CBT and GET are not based on good evidence. The need to emphasise evidence quality is because ‘biomedical’ (drugs or surgery) treatments based on just as weak evidence are not similarly being called out. If anything that would seem to be a bigger problem in the US.
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Thanks!

Just I don't see CBT/GET talked about in US ME Support groups on Facebook. That's why I was thinking that.
 
Michiel Tack said:
A proposal for ME Action: a commitment to evidence-based medicine

ME Action, a global movement fighting for appropriate care and effective treatment for patients with myalgic encephalomyelitis (ME), has initiated an initiative to specify its core values and principles. We are in admiration of ME Action’s achievements and appreciate its willingness to engage with the ME community to define the movement’s policy and goals. We welcome their commitment to inclusion, innovation, accessibility, and grassroots empowerment.

We do however think that there is an essential aspect missing in both the new mission statement and the scope of the values and policy initiative. We believe it is vital that advocacy organizations are rooted in science and have a commitment to neutrality and factfulness.

Historically, ME patients have been poorly treated by the medical profession while the number of researchers studying this disease has been relatively small. Many doctors and scientists working in the field have made strong and confident claims about ME that have turned out to be either overstatements or plainly false. This has created an environment where it’s difficult for patients to inform themselves about their illness and adequate treatment. The XMRV-saga and the more recent enthusiasm about Rituximab are but two examples of how easily things can go wrong when the uncertainty of preliminary findings is overlooked.

For this reason, we consider it vital that advocacy organizations such as ME Action err on the side of caution and do not make claims that go beyond what the current scientific evidence supports. We believe that ME Action should remain neutral towards scientific hypotheses, proposed treatments or reported findings, as long as these have not been established by robust scientific inquiry from multiple research groups. We argue that advocacy organizations such as ME Action should adopt a skeptical approach towards study results, even if reported by ME experts who are deeply committed to helping patients.

The commitment to these values may seem restrictive at first, but we are confident that this is the right approach and that it will strengthen advocacy in the long run. Sticking to scientific facts will maximize credibility with policymakers and researchers and help patients in obtaining reliable information about their illness. It will avoid false hope or getting stuck in dead ends. We also believe that a commitment to scientifically established facts will result in an inclusive approach, as it avoids controversial statements on subjects where the science isn’t clear.

We, therefore, propose to inscribe the following principles in ME Action’s values and mission statements:

Science-based: ME Action has a commitment to science and evidence-based medicine. Our advocacy, policy proposals and information resources are based on the best available science while recognizing the limitations of current research.

Skeptical: ME Action has a commitment to remain skeptical towards scientific hypotheses, proposed treatments and reported findings that have not been established by robust scientific inquiry from multiple research groups.

Cautionary principle: ME Action has a commitment to stick to established facts. We strive for high accuracy and prefer to err on the side of caution.


Signed by:

Michiel Tack, ME/CFS advocate in Belgium, blogs as ME/CFS skeptic, writes letters to the editor.

Peter Trewhitt, Person with ME, sometime research psychologist and retired Speech & Language Therapist.

John Peters, patient.

Jackie Goold, has ME, involved in various groups in ME community, an organiser for MillionsMissing Nottingham 2019.

Sarah Metcalf, ME patient.

Carole Bruce, one time psychotherapist. Now long-term severe ME patient.

Barry Chamley, husband of ME sufferer.

Richard Vallée, ME patient since 2008.

Lyn Gillam, Psychologist and Severe Patient.

Lenka Goldšmídová, Me patient and advocate, Czech Republic

Graham McPhee, ME patient, active in challenging poor quality studies on ME.

Dascha van Beurden, Belgian ME advocate, former psychologist, severely affected by ME.

Anna Wood, long term housebound ME patient, occasional letter writer and FOI requester.

Linda Vansteenwinckel, ME patient and advocate, Belgium - ME/CFS-Evolving Science.

Katy Bruce.

Maree Candish, person with ME and carer of a person with ME, Hutan on the Science for ME forum.

Andrea Vedeler, ME patient.

Dr. Richard Ramyar.

Jo Bruce, The Real ME, informal blogger, patient and campaigner.

Daisybell, person with ME and moderator on the S4ME forum.

Astrid Meyer-Knutsen, ME patient and advocate.

Amy Williams, sister of Merryn Crofts who died due to Very Severe ME

Clare Norton, mother of Merryn Crofts who had severe ME and died as a result of it.

Bea Ravn, PwME, active when able on S4ME and in M.E. Awareness NZ.

Chloe Leanne Brookes-Holder, 21 year old tube fed & bedbound ex-dancer. Former M.E support volunteer ‘dying to live’ & get back to supporting others via her Facebook & Instagram blogs.

Pamela Phillips, counsellor, person with ME, active in several support groups.

Lotta Hahn, ME-patient since 2012

MSEsperanza, ill with ME since 1998, officially diagnosed with "CFS" in 2005, S4ME forum member since 2017.

Eimear Forde, fundraises for ME Research when able

Susanna Degaardt, patient with ME.

Sean Kirby. Long-term patient committed to rigorous and ethical medical science.



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Hi, Michiel, Thank you for your hard work in this, please add my name:

Nasim Marie Jafry, patient and author of The of State of Me (2008)
 
I note that some people have posted their real names on this thread.

A reminder that this thread is public. This means if you have posted your real name, it is now publicly linked to your forum name and that link can be found on internet searches.

If you would prefer that public linking between real name and forum name not to be possible, I suggest you delete your post, or report it and ask moderators to delete it.
 
For transparency:

I've just sent the email to info@meaction.net and the emailadressses of the ME Action team listed on this webpage (https://www.meaction.net/about/team/).

I've added the following introduction:

Dear ME Action,

In light of your participatory values and policy initiative, I would like to present the following proposal to inscribe a commitment to science and evidence-based medicine in ME Action's core values and principles. Thirty-six members of the ME/CFS community have co-signed the public statement. I hope that ME Action will consider this proposal carefully and I look forward to hearing your response.

Thank you for your consideration,

Michiel Tack.

...​

After which I've added the full statement with co-signees.


I hope to keep you informed when I get an official response. Many thanks for all your help and support.
 
With all due respect, don't you all think it's more important that orgs like MEAction be pressed on issues like taking more radical direct action (a la ACT UP) ensuring greater funding for this illness, than petition them about something like this? There is very little high quality replicated evidence e on this condition and it's because we as a community havw failed to fight as hard as aids patients did, and held the NIH to account for funding
 
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