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

debored13 said:
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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Thanks for your comment.

I think the example of AIDS, while interesting, is very much the exception rather than the rule in medical history. I think opinions differ on what exactly made the AIDS patient movement successful. It had an inside/outside strategy. In my non-expert view, it was a combination of high-profile actions that got the attention of the media and knowledge of AIDS research and FDA/CDC/NIH bureaucracy on how to speed up the process. I don't think making claims that are not supported by scientific evidence was a necessary ingredient of that success.

The main reason for this proposal of a commitment to science and evidence-based medicine is not to increase NIH funding or to make us look good in the eyes of British psychiatrists but to make sure that patients get accurate information about their illness and are not bombarded with overstatements.
 
I've received a reply from ME Action, I will post it here below.

"Dear Michiel,

Thank you for your very thoughtful letter. #MEAction supports science and evidence-based medicine. We have always taken great care in our communications to the patient community and the public with respect to both science and medicine, and routinely engage the input of medical and scientific experts in work like the Research Summary and the Unrest Continuing Medical Education module (United States), of which we were a partner.

However, these issues are complex. Medical systems and practices vary across countries. So do traditions regarding how standards of care are developed, the relationship between patient and provider, and whether patients should be allowed to access experimental treatment under what in the United States has called “compassionate care.” For example, we have in the past supported patients’ Ampligen advocacy efforts despite weak evidence.

Due to these complex issues, we believe these questions require their own deliberative process, one not currently provided for under the current Values & Policy timeline. (The core questions addressed in this process were defined on the basis of a survey we deployed in November 2018.)

Moreover, we believe this process would best be served as a collaboration between the patient community and a medical & scientific advisory board (or similar), which we plan to launch next year.

Our statement of values and #MEAction USA, #MEAction UK, and #MEAction Scotland’s policy platforms are meant to be living documents, responsive to emerging community needs and the evolution of our field. We hope to revisit these questions you have so thoughtfully laid out next year.

In the meantime, we will continue to endeavor that all medical and scientific information we convey is accurate, contextualized, and helps support the goal of a public that is more well-informed about ME and a community empowered to make decisions that support their health.

Thank you again for reaching out and communicating your desires for high standards in regards to science, medicine, and research.

Sincerely"​
 
I've got the reply a couple of days (16/11) ago. The reason for the delay in posting is that I've sent another email directly after asking if I could share it online, for which I didn't receive a reply or confirmation. But perhaps that wasn't necessary because the response seems like a formal answer that can be made public - that's the reason why I'm sharing it anyway.

I've also sent a short reply with personal comments as it would be too complicated to consult with all signees. I've argued that moving the discussion to next year is fine if it means that the proposal will be discussed more thoroughly, but that I hope that this isn't merely a strategy to put the issue aside.

I've responded that I think traditions on standards of care aren't very relevant here as the proposal mostly aims to prevent ME Action from overstating the evidence base for treatments or research findings.

Finally, I've argued that consulting experts is good but that it doesn't automatically result in an accurate assessment of the evidence. In my view, it's not only expertise that is needed but also some scepticism towards biomedical research findings even if reported by ME/CFS experts who are sincerely doing their best to help patients.
 
Medical systems and practices vary across countries. So do traditions regarding how standards of care are developed, the relationship between patient and provider, and whether patients should be allowed to access experimental treatment under what in the United States has called “compassionate care.” For example, we have in the past supported patients’ Ampligen advocacy efforts despite weak evidence.

I fear the answer is clear: 'we at MEAction are happy to muddle along with a fudge and weak evidence'.
At least we know that. The fudge approach is the reason why we do not have any decent evidence.
There is nothing complex about this. Either you do things properly or you don't. If you don't you go round and round in circles for decades.
 
Michiel Tack said:
the proposal mostly aims to prevent ME Action from overstating the evidence base for treatments or research findings
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Jonathan Edwards said:
I fear the answer is clear: 'we at MEAction are happy to muddle along with a fudge and weak evidence'.
At least we know that. The fudge approach is the reason why we do not have any decent evidence.
There is nothing complex about this. Either you do things properly or you don't. If you don't you go round and round in circles for decades.
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This comment makes no sense to me. #MEAction does not conduct or fund research.

My understanding is that this proposal concerned how #MEAction characterizes the evidence for treatments or research findings in its outward communications. That's a valid thing to have opinions on and a debate over. But it's pretty absurd to conflate what one might consider inadequate skepticism in the interpretation and characterization of evidence with the kind of "fudge approach" in *conducting* research that could legitimately be "the reason why we do not have any decent evidence."

We're talking about (the principles behind) a communication strategy, not a lab procedure. It's not a binary situation where you "do things properly or you don't" the way that might apply in a research context. Actually, the way to "do things properly" in the case of a grassroots-network-style organization like #MEAction more aptly applies to its presumable desire to allow the full community to weigh in on this issue rather than immediately adopting the position advocated for by a particular segment of that community. The process considerations for a patient advocacy organization are different than they are for a scientist conducting research.

And while the way #MEAction approaches this issue may have significant impacts of various kinds, I don't see how it could be responsible for causing ME research to "go round and round in circles for decades" as suggested.

Sorry if this comes off as defensive. I volunteer with #MEAction and appreciate its grassroots, big-tent ethos and its deliberative, consensus-building approach to determining community values and policies. I also value scientific principles of rigor, skepticism, etc and want them employed in ME research. I don't think I'm the only person in this community for whom both of those things are true. So it's frustrating to read derisive hot take comments like this about an organization I and others here care about and are a part of, when the comments themselves "fudge" the issues and stakes at play.

I realize there are strong feelings about the many reasons why more progress has not been made in ME research to date, and those valid feelings are not always expressed in the ideal way. I also acknowledge this may be an in-joke of sorts that I didn't get as a newish active community member (though I've lurked a lot longer). I don't want to start a firestorm or anything. I've just seen a lot of comments like this over time that are pretty off-putting to otherwise eager members of this community, and I think it would be helpful for us all to err on the side of generosity (and accuracy) when talking about other communities of pwME, all of which likely have some overlap with this one. (Most people here already do this, which I appreciate.) We're all fighting for the same ultimate goals, even if we sometimes disagree about the best ways to get there.
 
ChloeC said:
And while the way #MEAction approaches this issue may have significant impacts of various kinds, I don't see how it could be responsible for causing ME research to "go round and round in circles for decades" as suggested.
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I believe what is meant is tolerance of low standards of evidence, and that if we want to achieve better results than those of the last 30 years, we should be holding ourselves to higher standards.

In my eyes there is certainly a problematic tendency in the ME/CFS community but also the medical community to accept certain ideas about the illness as true with insufficient critical thought. If we criticize ME Action I think that is because we want it to be better than that. We need it to be better than that.

Accepting ideas as true when they might actually be false is a good way to waste a lot of time and possibly waste resources and cause harm.
 
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I am sorry you feel my post is inappropriate @ChloeC, but as a biomedical advisor trying to help the community to get the research they need I think I stick to what I said. I can assure you that this has nothing to do with community in-jokes. It has to do with a sincere desire to see justice for PWME. I don't have ME and never looked after PWME but since being asked to advise I find the case for trying to do whatever one can to help overwhelming.

I think it is fair to say that the main reason the research goes round and round in circles is because clinicians have not been called out for not doing the research properly - not gathering meaningful evidence. Instead of handing out anti-virals and claiming they worked for people with this or that antibody profile there should have been proper trials.

I absolutely agree that the communication role of MEAction has nothing to do with actually doing research - which I guess is why their answer seems to be irrelevant. Their job is to focus on evidence that is likely to be useful for patients and also to make it clear to researchers that we want decent research.

I am not sure what a 'derisive hot take comment means' but I guess my comment was expressing exasperation at an advocacy group that seems to deliberately want to back off the role it could be playing in quality control - saying to clinical researchers WE WANT BETTER THAN THIS STUFF.

I don't think the considerations for advocacy are really any different from those for people doing research. We are all wanting to gather reliable information that might benefit PWME. I don't see any 'particular segment of a community' here. Everyone wants the same thing - or should do.

Everyone is happy weighing in to AfME for getting involved in PACE and not making clear that it did not accept the bogus findings. I think that needs to be done. But the same should apply to poor quality biomedical research, regardless of whether it seems more attractive on the surface. It may be very cosy being inclusive and big tentish but if one takes that approach why not welcome podcasts on CBT and GET and Lightning Process and all that?
 
Thank you @ChloeC for sharing your perspective.

I get the difference between a research and an advocacy organisation in theory, but many of us have seen pretty disastrous actions by advocacy organisations, for example, the UK organisation, Action for ME was complicit in the PACE trial, and years later has only just come around to joining the criticism of the CBT, GET approach, and still produces some materials with little or no evidence base which can cause harm. That complicity by the largest UK charity probably contributed to the long and ongoing battle to have these treatments axed.

What I am very anxious to see is any material about science in relation to ME produced in the name of any ME organisation not falling into the same trap with poor quality evidence about ME, not only psychosocial, like PACE, but also biomedical research which can also be poor quality or make claims beyond what the evidence supports. We see it frequently here in our discussions of published research papers.

If MEAction did not produce any materials of its own about science, and focused entirely on advocating for research funding, better medical education and better care, it would not be a problem. But MEAction does produce science materials in the form of research summaries, medical education modules and ,I think most problematic, MEPedia, which allows anyone to write what they like on medical and scientific subjects.

You mention Ampligen, which, as you say, does not have sufficient research evidence to support its use. As a hypothetical question, do you think it would be right for MEAction to advocate for individuals to be allowed access to Ampligen treatment on compassionate grounds? Or do you think the only action an advocacy organisation should take on Ampligen would be to advocate for more research on its efficacy? And the same for other treatments recommended by some ME doctors that have not yet been fully researched.
 
Thank you to everyone for your thoughtful comments, and especially @Jonathan Edwards for explaining what you meant. Your response makes much more sense; your original message communicated something quite different to me, as someone not already familiar with the details of your perspective on these issues.

I can't reply in detail right now, but I think you are all raising interesting questions about the function of #MEAction that are well worth discussing. I'll be back later to share my thoughts.
 
Thank you again @Michiel Tack for this. I think that @Jonathan Edwards, @Trish and @strategist covered the appropriate issues wonderfully in reply also. These are powerful contributions.

I think that it's possible that this wider conversation, including recent more specific threads, is caused by a misconception on ME Action's part. They are worrying about cultural differences holding treatment options back to a lowest common denominator (@JaimeS @EspeMor please tell me if I am over egging the importance of this to the view). The observation of differences is obviously correct, but I believe that it is a mistake to think that they are relevant to scientific determination.

There are indeed different structures and cultures in medicine between the US and Europe, with the UK NHS:NICE model not existing there, for example. NICE is also followed by insurers in the UK - but UK pwME know well that any person can pay any medic privately to treat outside NICE guidelines (as long as the General Medical Council don't perceive abjectly wrong practice).

Conclusion? "99%" of the time the treatment options are actually the same in the US, despite any differences in culture, pharma incentivisation or overall system. So the concern shouldn't be culture blocking access to options, as that's not the case from what I can see. I'd like someone to correct me, but I would also guess that most differences in access come from physical proximity to to a specific innovation or clinician. Again, not culture.

But there is a difference that comes from culture and that difference is what is causing this misconception: the percentage split between
  1. patients whose treatments are defined by scientific consensus and
  2. patients making a good elective scientific bet that is not yet consensus
Maybe the split is 90:10 in the US and 99:1 in the UK, who knows? That different ratio is the consequence of the cultural or structural differences that they have spoken about - I think this may be the cause of misconception.

This all being said, I think the onus is on ME Action to word things and structure things to make a clear distinction between the two types of treatment bulleted above. This is important for any system or hypothetical ratio value. This distinction does not define access itself, but only defines the status of the science. The science inherently doesn't care what that ratio is or why it might differ by culture. It just cares about the findings, how one got there and how one caveats along the way. We have to bend to scientific process and probity, not the other way around.

Apologies if I'm running over old ground. There's just so much to read on this and recent relevant threads and I can't cope with it all just now.
 
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One more brief point. There is some talk of democracy, consultation, consensus, which are all excellent principles in running an advocacy organisation when planning actions and setting up organisational structures and grass root groups etc.

But when talking about science, things like consensus among expert clinicians should not be the guide to scientific validity. It takes us into the territory of eminence based medicine, when what we need is evidence based medicine.
 
Exactly, and what that then opens up is expansion on what we've both said, which is how does one determine what the status is of a scientific issue? Because obviously can't be democracy, particularly for democracy's sake.

It's just a case of taking classic principles of scientific governance. My little split between two dimensions would of course be split into many other phases in practice, a proper pipeline of evolving status. At a minimum there would be a third dimension: good ideas that haven't been tested in any way all all and shouldn't be bet on yet by patients.

In fact, there would be no need to rework the wheel on this. Exactly this kind of governance is par for the course across research institutions and pharmaceutical companies. I'm sure that pharmaceutical research project managers have industry standard jargon for these phases, which could be adopted.

One way or another ME Action needs to account for this to be credible and not end up inadvertently dangerous on the scientific front one day. Being an advocacy organisation does not have to mean being involved in scientific discussion - so if an organisation is involved, the first principle has to be do no harm (in this case by mixing up consensus treatments with good bets or unknown bets).
 
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Trish said:
MEAction does produce science materials in the form of research summaries, medical education modules and ,I think most problematic, MEPedia, which allows anyone to write what they like on medical and scientific subjects
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I’m a bit baffled by the criticism of MEPedia. Is the general feeling that there should be no Wiki at all about this disease? All Wikis have the same strengths and weaknesses - because anyone can contribute to a Wiki of any kind, the information is usually considered a beginning place, not a final statement on any matter.

I find all Wikis useful in pointing me in a direction. ME-pedia certainly couldn’t exist at all if it were held to a higher standard than other Wikis.
 
Wilhelmina Jenkins said:
I’m a bit baffled by the criticism of MEPedia. Is the general feeling that there should be no Wiki at all about this disease? All Wikis have the same strengths and weaknesses - because anyone can contribute to a Wiki of any kind, the information is usually considered a beginning place, not a final statement on any matter.

I find all Wikis useful in pointing me in a direction. ME-pedia certainly couldn’t exist at all if it were held to a higher standard than other Wikis.
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I don't want to divert this thread into a discussion of MEPedia specifically, so I will just say, yes, I think there is a problem with an advocacy organisation having a Wiki that includes scientific topics related to its area of advocacy in the form of a Wiki that allows open non-curated material, and where most of its contributors are not experts.
 
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