MEAction: Join Our Values and Policy Initiative! September 2019

From an email newsletter.

On behalf of #MEAction International’s board, staff, volunteers and everyone who form a part of our wider community, I want to welcome and invite you to participate in what we are calling “Values and Policy Initiative” an ambitious, six-month initiative to learn, engage, debate and ultimately devise the core tenets of our global movement.

When we first asked the community last November what ground they wanted this process to cover, you cited these as the most important outcomes: disease definition and how best to educate health providers; advocacy tactics; devising concrete policy positions; shared values; and building a more harmonious community. When it came to the most important values for our movement, you said accessibility, participation, inclusion, transparency, and unity were key. You also asked for better clarity on #MEAction and clearer messaging from us.


Values & Policy
Ever since, we have been working to make progress on all of these dimensions. This Values & Policy Initiative, devised to be participatory and deliberative, will be a core part of achieving these outcomes.

Over the next six months, we’ll be rolling out a series of articles and think pieces written by staff and community members to address the following themes: participatory activism, civil disagreement & respect, inside/outside strategies, building coalitions, accessibility & activism, inclusion, diversity, equity, and how we define our community and our disease. We’ll be igniting conversations on social media, hosting community calls, and deploying a series of surveys. All this will culminate in a statement of principles and values as well as a formal policy platform. (You can follow the timeline and each of our planned pieces on this landing page.)


Greater participation & clarity
However, Values & Policy is just one part of achieving these outcomes. In order to increase our organization’s transparency and make it easier and clearer than ever how to engage, participate in and support the work, we’ll also be rolling out the following tools and initiatives in the coming year:

• A new mission and vision statement
• A formal membership program
• An #MEAction International Community Advisory Board
• A new website
• A clear onboarding and training process for new members and volunteers

We want to formalize membership in #MEAction and engage members in new ways, including meeting quarterly to keep members up-to-date on our wins, setbacks, and plans for the future, as well as to discuss and participate in guiding the direction of the organization, not just through this Values & Policy Initiative, but beyond. (Anyone can participate in this Values & Policy Initiative, whether or not they are a member of #MEAction.)

#MEAction International’s Community Advisory Board, which we aim to launch next year, will comprise leaders from across #MEAction’s network: US state leaders, #MillionsMissing organizers, Facebook moderators and members who reflect the diversity of our movement. This group will help us realize our shared values at every level of the organization and engage with staff in thinking about how best to scale and grow the impact of our work.

Finally, our new website design, a volunteer onboarding process, training, and our new mission and vision statement will make clearer our theory of change, our vision for the movement and future we are building, and how you can participate in helping us realize that vision.


Who and what is #MEAction?
But first, I want to start with what is already clear, and that is a new statement of our mission and vision. We are igniting a global revolution in ME care. The kind of organizing and impact we envision will not happen overnight. It will take a robust organization and a community of thousands. It will take all of us.

The mission of #MEAction International, our US-registered, 501(c)(3) organization, is to build a global movement to fight for recognition, education and research so that one day, all people with ME will have access to compassionate, effective care. Our board and staff work every day to further that mission.

That organization develops and supports a network of country affiliates, affinity groups, city, state, regional and other local chapters, and individual advocates. We are people with ME, caregivers, family members and allies. Our network includes #MEAction USA, #MEAction UK, and #MEAction Scotland, our nine US state chapters, and thousands of individual advocates, organized in over 122 Slack and Facebook groups. This network of activists is the leadership and rocket fuel behind all that we have been able to achieve.

Our philosophy—what makes us different from most health advocacy organizations in any disease—is grounded in grassroots empowerment; distributed, networked learning; accessibility; diversity and inclusion; and innovation.

We are building all this to achieve three goals––recognition, a robust ecosystem of research & care, and a thriving community—through our work of outreach, organizing, advocacy, educating the medical community, and cultivating new knowledge.

And so when we talk about our Values & Policy Initiative, its purpose is to devise a statement of principles and values that will guide and govern the entire network. (Our 501(c)(3) organization’s mission and philosophy will remain unchanged). At the end, we’ll also have three policy platforms: one for #MEAction USA, one for #MEAction UK, and one for #MEAction Scotland, which each may differ in scope and positions, depending on local needs.

With that, I hope you’ll get started by first reading our new mission and vision in full:

What is #MEAction
And acquaint yourself with our Values & Policy Initiative via our new landing page:
Visit Values & Policy
It is going to be a lot of work but with your participation and engagement, I believe we’ll grow to better understand our community’s hopes, goals and needs, connect with what unites us, and clarify how we will work and grow this movement, together.

Sincerely,

Jennifer Brea
Executive Director
#MEAction
On behalf of #MEAction’s board and staff

 

Here's a link to the article: https://www.meaction.net/2019/09/24/join-our-values-and-policy-initiative/

I think it looks alright but that there needs to be a focus on 'factfulness' and commitment to evidence-based medicine, both in the principles and core values.

Would other forum S4ME members be interested in working out a text arguing for this and laying out a concrete proposal that ME Action could include in its principles?

I think it's important advocacy organisations do not overstate things and err on the side of being too cautious. In my view, there were already some problems with this in the ME Action research summary: https://www.s4me.info/threads/introducing-meaction’s-2019-me-research-summary.9965/

 

My energy is very limited, but I would be willing to help if I can. I think the core principle needs to be something like “basing policy on the best available science, recognising the limitations of the current science research and avoiding claims that to go beyond what the evidence will support“.

The benefits of this might be:

— maximising credibility with policymakers and researchers

— avoiding getting stuck in dead ends, which would be to the detriment of patients

— reducing controversy, by avoiding adopting positions that some went except because they're not backed by evidence (though that might cut both ways, some people simply want to have their views reflected).


These are just initial thoughts, what's needed is a proper discussion about this.

I am full of admiration for #MEAction in taking on such a vast exercise, and their willingness to come and consult pretty much the entire world.

 

Since the first the first community defined outcome listed is disease definition.

While parts of the community insist on narrow and exclusive definitions of ME it will be difficult to have truly strong advocacy because they are, in the worst case, trying to exclude anyone that doesn't fit their definition of true ME from research and care. In the best case, the others that in their view don't have ME are neglected and forgotten. If this was the adopted strategy, there is no point for anyone not meeting the narrow definition to get involved and then our community is divided.

It gets worse: the narrative that certain advocates repeat with a firm conviction that "this large group diagnosed with ME doesn't have real ME" is very counterproductive for advocacy. Imagine for a moment that a high profile official, someone like Francis Collins, decides to get involved and invites several groups of patient advocates into his office. Then hears how these groups accuse each other of not having real ME. I think he will be left with an increased sense of uncertainty and possibly confusion. Nevermind the incoherent position of wanting a diagnostic test while simultaneously making strong statements about who has or doesn't have the disease.

You can believe whatever you want about ME as far as I'm concerned but for effective advocacy we need to agree on common goals and work together.

One of the unspoken goals of enforcing a narrow case definition also appears to be stopping further harmful psych oriented studies that report silly things like "ME can be cured by telling your illness to go away". I don't like these studies but don't think this is a good strategy. The case definition is not much of a weak spot in these studies but things like the failure to properly control for biased reporting and outcome switching are. That's something an outsider, say a statistician can easily recognize as problematic.

There are some other aspects such as complete lack of scientific basis to claims about being able to separate true from false ME with one diagnostic criteria. I think it is also problematic to use the "according to experts, true ME is ..." argument because there are other more influential experts like Wessely with opinions we don't like.

Patients united against PACE, or so it felt, and I think that's the energy that we need full time for other goals too.

We also need to move away from the fringe of healthcare and research, where patients believe in unproven theories, believe they can cure themselves, are generally isolated and see specialists with dubious theories that continue to get in trouble with health authorities.

Anyway, I think what we really need to focus on is growing into a strong and organized advocacy movement that can help build a strong research program running (the main limitation in research is funding, this is what scientis continue to tell us).

 

I've worked out a proposal. Be mindful that this is just a first draft, it might need some changes. The idea is to work on this with others here on this thread and when we think we have a final version, we could make a new thread for it and ask other ME advocates if they would like to support the statement.

For clarity: this is not intended as an official S4ME response but as a statement that could be supported by individual ME advocates.


A proposal for ME Action: a commitment to science, neutrality, and factfulness

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’s 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 promising but preliminary findings are assumed to be correct.

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 2019 ME Action research summary forms an example where such skepticism was lacking in strength.

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 for patients with ME in the long run. Sticking to scientific facts will maximize credibility with policymakers and researchers. It will help patients in obtaining reliable information about their illness and avoid false hope or getting stuck in dead ends. We also believe that a commitment to scientifically established facts would 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 ....

 

It seems that I got the word 'factfulness' from the late Hans Rosling, who defined it as "The stress-reducing habit of only carrying opinions for which you have strong supporting facts."

Hope that it works. It's difficult to come up with a term that describes a commitment to sticking to facts and erring on the side of caution. Any suggestions for an alternative?

 

Committing to being evidence based is the most important they need to do in my opinion but I’m not confident they will.

excellent work though in bringing this to their attention.

 

Although I think you make valuable points, I would prefer separating them. Changing MEpedia's editorial policy and determining what directors cannot say in their personal capacity are more concrete points; they are less about defining core values or principles and more about applying them in a correct way.

I think that the points I've raised are pretty straightforward and uncontroversial. I hope that other ME advocates will be willing to support them and that there is a realistic chance that ME Action will adopt them. Therefore I'm rather reluctant about adding other issues on which there could be more disagreement.

That said, I think I agree with both points that you raise.

 

Good job, @Michiel Tack !

I would respectfully disagree with your 2 additional statements, @Trish . Taking the second first, MEpedia has all of the strengths and weaknesses of all Wikis. And like all other Wikis, no one should take the information as the final word.

And I don’t believe that statements from senior staff and board members of any advocacy organization should be restricted. Statements from an organization are different, but I don’t think that it’s fair to restrict the speech of an individual because of a position they may hold. Under what circumstances could they express their own opinions?

 

Nice job, @Michiel. Thank you.

One area where I see it differently is in how you express the point about neutrality.

Today, ME/CFS knowledgeable clinicians are recommending pacing to minimize PEM and using various pharmacological and non-pharmacological approaches to improve sleep, orthostatic intolerance, pain, and cognitive impairment. This also includes treatment of comorbidities and in some cases use of antivirals or IVIG under specific circumstances. In the US, the drugs being used are all FDA approved for other indications, for one of the comorbidities, or for the general symptom.

But we don't have any formal studies specifically in ME to definitely prove that these are efficacious in an ME cohort. All we have is clinical expert opinion and experience that these approaches can reduce the disease burden and improve the quality of life.

While it's not the same quality as RCTs, the consensus of disease experts on the best treatment practices is evidence and IMO, should be accepted as evidence, particularly given the limitations of the current research base that you note.

Otherwise, treatment recommendations will have to wait for many years until formal treatment trials have been conducted by multiple research groups. And patients will be left with no options to reduce symptoms and make their lives more bearable.

 

If a Wiki isn't evidence based and all statements contained within a topic text referenced with "reliable sources" what purpose and whose interests does it serve?*

The concerns here were extensively covered in two earlier threads:

https://www.s4me.info/threads/concerns-about-craniocervical-instability-surgery-in-me-cfs.9638/

Concerns about craniocervical instability surgery in ME/CFS
May 23, 2019

https://www.s4me.info/threads/mediu...al-strain-jennifer-brea-september-2019.11138/

Medium Blog: 'Could PEM be a symptom of neural strain?' Jennifer Brea, September 2019
September 5, 2019

-----------------

*BTW, I am still waiting for errors and misreporting around SNOMED-CT and ICD-10-CM to be corrected in a 2018 "Research Roundup" report, having raised the need for corrections three times now with #MEAction and received no response at all:

https://www.meaction.net/2018/11/15/sept-oct-research-roundup/

 

This is very good as it is @Michiel Tack. Some suggestions for further reflection and discussion:

"Adequate" has undertones of mediocre, maybe replace with one of the following: appropriate, suitable, better, good, high-quality, ...?

Skeptical - or critical?

Neutrality: ME Action has a commitment to taking a neutral position on scientific hypotheses, proposed treatments and reported findings unless a robust evidence base has been established.

Factfulness: factuality, evidence? Hm, not quite the same meaning.

Alternatively, since you're trying to cover two concepts with one word, how about separating them? "Sticking to facts" is already covered under the principle "Science-based".

"Erring on the side of caution" could be the third principle by itself, under the header of the oft-quoted "first, do no harm". That might also go a tiny way towards addressing @Trish's concerns which I largely share but don't believe will be able to be addressed in this particular context. However, having the do no harm message firmly embedded in the organisation's principles may nudge associated individuals in the same direction. Probably a forlorn hope given the general tendency everywhere in society to forget that freedoms (of expression, in this case) and duties (of care) go together...

This is a valid point. Maybe it could somehow be added to this bit?

 

I know you're talking about strategy here and I share your fear of division as well as of people getting left behind who turn out to not have 'true' ME, something I'm almost certain is going to happen once we get the first biomarker that identifies a subgroup. Woe betide anyone not in that subgroup.

However, there's another side to the argument and that's the large numbers of people currently misdiagnosed with ME or CFS. Embracing them unquestioningly as ME/CFS patients doesn't do them any favours. They have a right to a correct diagnosis and correct treatment for that diagnosis and the sooner we can define 'true' ME (all subgroups) the better for us and for them.

 

I don't think that's "another side to the argument". Obviously it doesn't make sense to treat a person as having ME/CFS when they actually some other disease.

I'm talking about advocates insisting that for example only the ICC diagnostic criteria can diagnose true ME and that it's the definition that should be used in research and care. They seem to believe that anyone not meeting these particular diagnostic criteria is misdiagnosed (does not have true ME).

This narrative is problematic for a variety of reasons.

 

But at some point we will need to agree on some description of what ME/CFS is if the term is going to have an understood meaning. What about PEM for example, should people who do not have PEM and were diagnosed with a criteria that didn't require it all be classified into the same group as people who do have PEM. What if in the wider community the majority of people with the ME/CFS label do not have PEM. Should those with PEM and those without PEM all be given the same prognosis, told to try the same treatments, recruited into the same trials.

 

I agree that PEM is emerging as useful distinguishing feature. There are probably also a significant number of patients that have an unexplainable syndrome without PEM that is otherwise similar to ME/CFS.

The ethical response is to include these people in research and efforts to improve care.