MEAction: Join Our Values and Policy Initiative! September 2019

This.

 

People who do not experience PEM do not have ME if you look at the ME expert the late Dr Melvin Ramsay's description/observations of hallmark muscle fatigability on trivial exertion. The concern for those of us who have lived with a diagnosis of RamsayME since 1980s - pre-CFS labelling - is that we have had a proliferation of criteria since then and now a hybrid 'ME/CFS'.

 

Thanks for your response.

Could you give an example of something ME Action might want to do that would be in conflict with the principles I propose?

Suppose that an updated version of the IACFS/ME primer for clinicians comes out that contains the expert treatment advise you described. I think the principles I propose do not prohibit ME Action from sharing that document, as long as it describes and frames it in the right way, namely as expert advice, not scientific evidence.

Their video on diagnosis and management with David Kaufman might be problematic as it contains statements such as "virtually all patients will have a low natural killer cell function." The principles I propose indicate that ME Action should be more careful with promoting these kinds of statements. But since it's merely a principle to strive for, it would not mean that they should delete the video.

Regarding pacing: I think organisations such as ME Action can describe it as a strategy that patients find useful in managing their symptoms, but that it is not a treatment and that there is insufficient evidence for its efficacy. They can also say that PACE is mentioned in the NICE guideline or on the CDC website, and therefore explain what it's about or how it is done.

 

Thanks for the suggestions Ravn!

I'll go with effective care, let me know if you prefer another term. I'll indicate changes in the text in red.

I do prefer skeptical over critical though, as it focuses more on questioning and doubting things rather than criticizing them.

'First do no harm' might be a little too strong, cause it's not so much about medical treatment but about ensuring that everything that one writes is as accurate as possible and based on facts. So for example in criticizing the GET or CBT approach, it's important not to make overstatements.

 

I just spent some time considering the use of the word effective in the abstract of some paper recently posted. The word needs to some additional description to determine the effects intended. Something ma be effective for some purposes, but not for others; effective for ssome people's requirements, but not for other's. It is a word to be used with caution.

 

To clarify: this text presented above is not a proposal to form an official S4ME response (it would be weird for one organization to say what principles and values another organisation should have).

It's something I would like to be sent to ME Action staff and their board to consider now that they are formulating their core principles and values. This seems like the right time to raise the issue if anyone is interested in doing so. I hope that other ME advocates are willing to sign it as well. The text is open to proposed changes so that we can all agree on it.

You don't have to be a high-profile or well-known advocate to co-sign the statement. What I had in mind is that below the letter, we list the names of co-signees with a very short (1 sentence) description of how they are involved in the ME community or advocacy for patients. If you prefer to use an alias instead of your real name, that's not a problem if you're known that way in the ME community.

 

I agree it's not specific enough to describe a treatment in a scientific paper, where the term should probably not be used in a general sense without specifying on which domains the treatment is effective.

But I think it's different here because we're describing a goal, not a study or evidence base. So a non-specific and general term is appropriate.

I used it because it's the term that ME Action uses in its new mission statement, which reads (my bolding)

Nonetheless, I'm open to better suggestions...

 

I've inserted it in the text.

 

Apparently, the term compassionate care refers to medical and emotional care for patients with terminal diseases. So that may not be the right term either.

Back to effective care

 

Thanks for giving great context for your suggestions, @Trish . I completely agree about anyone in leadership of an organization giving suggestions about treatments. I just don’t want the leadership of an organization to be unable to express an opinion separate from the organization’s official stance.

As for MEpedia, I see that as different from official publications. All Wikis contain problematic information because anyone can add or alter pages. Just look at what Wikipedia says about this disease! Wikis are constantly in flux and anyone can step in and correct them.

Articles that are written by the leadership, staff, and even volunteers should be held to a much higher standard.

 

Not sure if this is your intent but this statement might suggest that expert advice is not evidence. But as I understand it, evidence-based clinical recommendations can be based on a range of types of evidence, including systematic reviews at one end and clinical experience and best practice at the other. Since research-based evidence of treatments is lacking, all we have is the clinical experience and best practice of disease experts.

The National Academy of Medicine report concluded "The committee’s literature review yielded data demonstrating poor NK cell cytotoxicity (NK cell function, not number) that correlates with illness severity in ME/CFS patients and could serve as a biomarker for the severity of the disease, although it is not specific to ME/CFS." Wouldn't such a review and the underlying studies from multiple research groups be considered strong evidence for poor NK Cell function, which would be further supported by the clinical experience of disease experts?

Re pacing not being a treatment - are you meaning that its a management strategy, not a treatment? I'd agree with that. Or are you meaning something different? Either way, same point as above regarding clinician experience and best practices as evidence.

 

I've often thought Fukuda criteria could be really useful in research if used differently, i.e. with cohorts large enough to split into two groups:
Fukuda with PEM and Fukuda without PEM.
Looking for differences between the groups could be interesting.

Maybe a solution here would be to separate the common "ME/CFS" name back into ME (with PEM) and CFS (without). Like type 1 and type 2 diabetes; there are significant similarities but also major differences. That way you could have organisations advocating for both ME and CFS while still acknowledging the differences.

 

Further email from MEAction

As you may have heard, we launched our “Values and Policy Initiative” this week! We are undertaking a six-month community process to learn, engage, debate and, ultimately, devise the core tenets of our global movement for myalgic encephalomyelitis (ME). Read more.

Our goal is to better clarify our values, tactics and positions so that we are more unified in our work as a large, diverse community.

Last November, we surveyed the community about what topics it wanted to discuss during this initiative. You cited these topics as most important: disease definition and how best to educate health providers; advocacy tactics; devising concrete policy positions; shared values; building a more harmonious community, and more clarity on #MEAction.

Read the full results of the survey below.

Read the Survey Results
Over the next six months, we’ll be rolling out a series of articles and think pieces written by community members and staff for the community to read and debate our values and positions.

All this will culminate in a statement of principles and values as well as a formal policy platform, which the community will ratify with an up-or-down vote.

Visit our Values & Policy webpage below to read more about the topics we will discuss, the timeline and to see published articles.

https://www.meaction.net/meactions-values-policy-initiative/

We look forward to the rigorous conversations and learning we will do together!

ETA: Missing link

 

Ok. But the things I propose do not forbid sharing or giving information about expert advise, as long as the evidence behind it is not overstated and properly framed. So it should be presented as something that ME/CFS experts do, based on their intuition and experience, not something that is supported by scientific evidence.

I'm still not sure what you are disagreeing with in the text itself, but I suppose it's the term 'neutral'? What if I leave that out. So it would read something like this:

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, as long as these have not been established by robust scientific inquiry from multiple research groups.

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

 

Thanks for the suggestion.

This does give the impression that it's desperate patients that form the problem, while the issue that I want to raise is more about a lack of caution or skepticism towards biomedical research findings in the ME/CFS community.

What about: "The XMRV-saga and the more recent enthusiasm about Rituximab are but two examples of how easily things can go wrong when promising but preliminary findings are taken at face value."