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

I would like to send the following proposal to ME Action, as it is currently in the process of specifying its core values and principles. I’m inviting other ME/CFS advocates and members of ME/CFS community to co-sign the statement if they agree with the proposal.

I prefer to make the statement and co-signees public so it can be viewed and consulted by anyone in the ME/CFS community. I will continuously update the list of co-signees on this thread on the Science for ME forum. If you prefer to use an alias instead of your real name, that is not a problem as long as the alias is a name that you use to connect and engage with the ME/CFS community. I also invite you to add a one-sentence description of your involvement in the ME/CFS community. This doesn’t have to be an achievement, more a description of what you do or where people might know you from.

You can support the proposal by responding to the Science for ME thread or contacting me on various social media. I will then add your name and one-sentence description to the list of co-signees, which will be public. After a period of approximately 2 weeks, I will send the letter to ME Action’s staff and board of directors to consider the proposal.

 

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.

Nasim Marie Jafry, patient and author of The of State of Me (2008).

JemPD, member of S4ME & ME/CFS patient

Diane Ogilvy, person with ME

Humbert ME @Bert_EM_SFC (Twitter) I'm #pwME.

Annamaria, member of S4ME; sick with ME since 1990.

Snowflake, ME patient since 2005 and member of S4ME

Ellen V. Piro, Founder of the Norwegian ME Association'



....

 

@Michiel Tack please add my name

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

 

I would like to see an explanation of what commitment to science and evidence-based medicine means. It could be reasonably be interpreted to mean "trusting The Lancet and Cochrane".

In the context of ME/CFS I think it means recognizing that not all ideas about the illness that are circulating are true and that we need to exercise some critical thinking and be willing to reject them if they don't make sense. It also means not accepting an idea as true while it's not supported by research.

 

Yes, this chimes with me. The BPS crown are forever proclaiming their 'science' and their 'evidence', even though they are both of very poor quality.

ETA: I see in the next sentence you do clarify with "best available science".

 

The term evidence-based medicine suggests that medical decisions should be based on evidence, not on trusting experts or prestigious journals.

In the old days, medical guidelines could be written by experts in the field who used their experience and expertise to tell others what they should do (eminence-based medicine). Evidence-based medicine is in opposition to that and says that medicine should be based on evidence gathered by the scientific method. It recognizes other sources of evidence but suggests that clinical decisions should be based on the best quality evidence. So expert opinion, patients reporting improvements or simple case-control studies are considered less reliable than randomized controlled trials.

Evidence-based medicine is now the standard in all of medicine. I realize that the term is being misused by people who don't want others to see how weak the evidence is for the treatments they like. But as been noted elsewhere on the forum, these researchers usually refer to randomized trials that use patient-reported outcomes and are not properly controlled or blinded, so not high-quality RCT's. I don't think their misuse of the term is a good reason not to use the term in the correct sense.

While the term evidence-based medicine might be obsolete in medical research or clinical guidelines, where it all has become standard, I think it's appropriate and relevant in relation to patient- and advocacy organisations.

 

I think this is well worded. There are potential confusions around ‘evidence-based’ and ‘science - based’ but I think the intention is clear enough.

Science is generally about explanatory hypotheses. The hypothesis that a treatment will work is not explanatory so we tend to think of a test of it in terms of evidence base rather than science base. On the other hand a scientific idea is strictly speaking just a testable idea. So it is a semantic quibble. What we want is reliable evidence. It does not have to be explanatory. So maybe evidence based is less confusing.

I am doubtful that a’scientific method’ comes in to this in any special way. The scientific method is simply that of testing things as rigorously as you can. Popper more or less defined science for us but pointed out that any means of testing was OK. The reliability of a test depends simply on a common sense analysis, however sophisticated the field. Rules about methods like RCTs are by and large a distraction because they are only ever an approximation to what clear reasoning works out to be best in any given situation.

 

On Wikipedia it says that evidence-based medicine is about classifying the evidence according to its strength and giving more consideration to stronger evidence. The strongest evidence is from meta-analyses, systematic reviews and randomized-controlled trials. I think that's the generally accepted definition. In the field of ME/CFS we have seen a lot of garbage elevated to high quality evidence, and then going on influence guidelines and textbooks.

I think we need to spell out what we mean exactly.

 

That's a problem of misinterpretation of the evidence, not an argument against a commitment to high-quality evidence.

I suspect you yourself would challenge these past mistakes by pointing out the quality wasn't as strong as the researchers presented it. You might argue that the authors didn't use a proper control group, didn't account for the expectations of trial participants or made a lot of other methodological mistakes. So you would be challenging these claims using the principles of evidence-based medicine.

But this is a statement about principles and core values, so I don't think it's realistic to spell out what ME Action should regard as good evidence. There are textbooks for that.

 

I forgot to mention that in this thread there's more information and discussion about the proposal and the text: https://www.s4me.info/threads/meact...ative-september-2019.11449/page-3#post-205238

I've got a lot of help drafting the text from other S4ME forum members. Many thanks for that!

 

Okay. It's not a big deal. It's a good letter. I just thought it would be helpful to be specific and avoid possible misunderstanding of what is meant here.

 

Excellent letter, thank you. Please add my name:-
Carole Bruce, one time psychotherapist. Now long-term severe ME patient.

 

On reflection I do agree it is better to not get bogged down, in this context, into definitions of what is meant by science and evidence. It is in fact as plain as the nose on the faces of most people, except those who choose to corrupt the meanings; anything beyond that starts to smack of playing to their tune.

 

Neither of which have produced credible science on the topic. They have specifically strayed far off the path and engaged in the promotion of blatant pseudoscience and violated their core principles in the process. If anything, this statement applies to both of them more than anyone else.

 

Just a reminder: if some want to sign with their full name but prefer to keep that identity private or separated from their usual ME/CFS alias, they can contact me in PM and I'll add it to the list, so without you having to come forward with you full name on the forum or social media.

 

Looks good to me.

Signed: Richard Vallée, ME patient since 2008

 

Beautifully done!

Please add my name to the list.

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

Of course, if you don't like that description you could just add "vexatious"!

 

‘Evidence-based medicine’ has got a bad name for being recipe-based and that is a potential problem but the ideal is simple and sound.

What I think people are beginning to realise is that meta-analysis is a pretty unreliable process. I have always preferred to look for a single cast iron study and then check to see if any other studies cast doubt on the castness of the iron.

 

That sounds eminently sensible.