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Values & Policy: Outcome of our November Poll

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#MEAction’s Values & Policy initiative has evolved out of the need to better clarify our values, tactics and positions so that we are more unified in our work as a large, diverse community. 

As a first step, we asked the community last November to take a survey to indicate what issues are most important to you to discuss during our Values & Policy initiative. Below is the feedback from that poll. 

Based on what we learned from the poll, we will be holding a community-wide conversation over the next several months that will include articles on topics related to our values, tactics and positions, community video calls, and online discussion, debate and, finally, a community-wide vote. Learn more on our web page.

Our goal is, ultimately, to draft a set of statement of values and create a policy platform, upon which we will base our work. Our policy positions may vary from country to country, depending on national context.

Poll Results

Who took the Poll: 

The poll was taken by 275 individuals with the majority from the US (37 percent) and the UK (32 percent), followed by Canada (8 percent), Australia (6 percent) and Germany (4 percent.) See graph below: 

COUNTRY SUBMISSIONS   PERCENT
United States 100 36.8%
United Kingdom  87 32.0%
Canada 22 8.1%
Australia 17 6.3%
Germany 11 4.0%
Unknown 9 3.3%
Netherlands 4 1.5%
Sweden 4 1.5%
Spain 3 1.1%
Ireland 3 1.1%
Belgium 2 0.7%
New Zealand 2 0.7%
Czech Republic 1 0.4%
Denmark 1 0.4%
France 1 0.4%
Israel 1 0.4%
Isle of Man 1 0.4%
Mexico 1 0.4%
Norway 1 0.4%
South Africa 1 0.4%

 

Desired Outcomes: These are the outcomes that people would like to see come out of the Values & Policy initiative: 

Hoped for outcome of V&P initiative % of Submissions Mentioned
How to best educate health care providers   77%
Disease definition 63%
Advocacy tactics 61%
Concrete policy positions 54%
Clarity on #MEAction 50%
Clear messaging 49%
Shared values 40%
More harmonious community 36%

 

Top values mentioned: These are the top values mentioned by word count. Accessibility, participation, inclusion, transparency and unity are the top values mentioned. 

Term Word Count
Accessibility 50
Participation 39
Inclusion / Inclusivity 32
Transparency 25
Unity 24
Support 18
Research 15
Open 12
Equal 11
Respect 11

Questions posed in the Poll: 

  1. Question: For what ISSUES would you like #MEAction to take a formal position (an example of a issue position may be around disease definition, CBT/GET, etc?) 

Response in order of priority (includes number of mentions): 

  • Take formal stance on GET / CBT and that ME is not a psychosocial or biopsychosocial disease: 99
  • Disease definition: 73 
  • Research funding: 36
  • Medical education: 26
  • Nomenclature: 16
  • Support – insurance, disability, care: 16
  1. Question: What are the most important topics or questions for this process to address?

Response in order of priority (includes number of mentions): 

  • Disease definition: 37
  • Research funding: 36
  • Doctor education: 31
  • Combating stigma (including GET/CBT, biopsychosocial models, MUS, somatization of ME): 27 
  • Advocacy work: 23
  • Support – insurance, disability, care: 18
  • Clarity about #MEAction’s organizational structure, positions, decision-making process, country-by-country processes, leadership: 18
  • Treatment: 17
  • Access to doctor: 13
  • Nomenclature: 7 

Comments

Below are some direct comments on the following topics from the poll. Each bullet point represents a separate comment grouped beneath an overarching theme. 

Values

We must be accessible:

  • I think accessibility is important, without which participation will be limited, and pwme will be further marginalized. That said, some things are best accomplished in person and these activities should not be eschewed because they are inherently inaccessible to some.
  • Recognizing that different people cannot participate as much as they would like, but also providing opportunities for those who DO wish to participate but don’t know how.
  • Accessibility – especially for people who are severe and very severe; also for people who are working and ‘invisible’ and need to be so in order to remain in work. 

We need to be compassionate, respectful and considerate of members of our community

  • I value openness and a culture of mutual respect, self-care, compassion, support, and joy. I value having the space/permission to try things and fail, to make mistakes and apologize, knowing that creative approaches and working in groups is always a learning process that is inherently imperfect.
  • Keeping a sense of a united community; being the community “militant”
  • I guess too there’s got to be something about mutual respect? I find the trolls, etc over what could just be a simple different way of thought or way of looking at things is so disturbing and deleterious to the whole community. It makes lots of us not want to get involved.
  • And support of others even if they might have different opinions and tactics (though it’s not necessary to endorse something that’s incorrect).
  • A recognition by the community that it’s ok to have various tactics and opinions and other patients are not the enemy even if you disagree with their tactics or they criticize some detail of your messaging. However criticizing someone’s intent or calling a fellow patient an enemy or constantly saying some patient or other patients in general have broadly harmful tactics or messaging is mean rude and off-side.
  • Respect for different views/approaches on all walks of life & especially on ‘difficult’. ME related issues.
  • Thankfulness: for this organisation and one another, our skills, time, creativity. Whether ppl can offer a little or a lot, paid or volunteer.  

We must be intersectional

  • Participation- ensuring organisation is inclusive of LGBT community specifically trans, non-binary and gender non-conforming folks- what policies/practises could be put in places to ensure feel welcome/safe in MEAction.
  • Healthcare/treatment accessibility for all patients with ME, and ability of all to have access to studies/being part of studies (not just those with finances or connections to do so). Inclusion of all socioeconomic levels and ethnicities/backgrounds, and ages (older as well as younger patients as it appears those most ill for longer periods of time have been somewhat forgotten and/or excluded) in the ME/CFS population being helped and advocated for.
  • #MEAction should strive to be diverse in more ways, especially racially and politically. Having a more diverse political base may well help us with the issues we have around Republican members of Congress. 
  • Inclusion of severely ill (totally bedbound) patients.
  • Inclusion of seniors with ME in requests for data, participation in trials, funding for research that includes the effects of aging on those with ME.

Tactics

How radical should we be?

  • Respectful, reasoned, intelligent and determined, relentless approaches (as opposed to vitriol, complaining, bashing, etc.) – we will get more respect when we use respectful and firm approaches with ‘we will not back down’ tones.  
  • “Would like it clear that #MEAction supports radical tactics (e.g. sit-ins, protests, etc.), but also perhaps a more formal version of what we call the inside/outside strategy!”
  • Protest, civil disobedience – what risks is it willing to take for the community?
  • Everything possible that can imitate the AIDS-activism model. I realize that they had a sizeable headstart from all the the gay-rights activism coalitions/protests et al that were already in place when AIDS came on the scene, and by and large, until the last stages, most people with AIDS were much more functional/less sick than much of our ME community and therefore able to participate in activism more than we can – so, a big challenge, of course, but so important to learn from/adopt all we can from what worked best for them that could be transferred to M.E. activism.
  • I would love to see clarification on how the organization might utilize various forms of protest, including more controversial/risky forms such as the Per Fink action — e.g. can we risk civil disobedience under the auspices of MEAction?
  • Keeping a sense of a united community; being the community “militant”
  • “Protest is great. On subject of tactics I, personally, protested in the #MillionsMissing Sheffield protest this year and supported #MEAction’s New York protest against Per Fink.
    HOWEVER, from a U.K. perspective, the TYPE of protest is important. Shouty, student type protests ( e.g. “what do we want … we want it now”) are not the best tactics in the U.K. In David Tuller’s comments to me as to why leading U.K. BPS proponents have managed to deflect criticism for so long, he considers that the fact that we are a polite and deferential society, more so than the US, has played a part. (David’s words, not mine). I agree with him and, therefore, there is a balance to be struck between getting noticed in public protests, and being regarded by the public as slightly loony extremists with just another axe to grind.
    Although U.K. protests have been very ‘British’ so far, I think the need for this balance should be taken into account by #MEAction in any recommendations going forward.
  • I’m perfectly fine with every tactic except “de-platforming.” I was deeply troubled to see #MEAction push this kind of suppression recently at my own university and on Netflix. We, who know so well what it’s like to be silenced and invisible, should be the first to insist that everyone, however problematic, however harmful, deserves any platform they can get, just as we should insist on taking any that we can get.
  • I support protests and engaging government representatives on the many problems pwme still face.
  • I value nonviolent direct action (protest), as well as dialog and collaboration with  leadership within established organizations. I think we should choose the right tool for each circumstance, recognizing the power and limitations of each tactic. I believe all activities should be nonviolent and should remain in the public domain (should not target  anyone in their home).

Who do we make alliances with and on what basis?

  • I do not support the approach of forming coalitions with other illness groups. ME needs to be recognised in its own right first.
  • Coalition building with educational institutions for medicine and allied healthcare providers worldwide.
  • Coalition building: judicious and effective.
  • Working with other organisations is good as long as it is clear that their principles are the same.as #MEAction. That is an important caveat. #MEAction shouldn’t be afraid to challenge other groups if they disagree with them.
  • Continuing to work with other groups when interests align. This includes disability groups but also specific illness groups including, if appropriate, mental health (they benefit when resources not wasted on people who won’t benefit). Also, finding sympathetic contacts at human rights organisations and provide education and seek cooperation and help.

How do we build coalitions? How do we keep distinct and focused?

  • I also think transparency regarding collaboration with other ME activists/orgs is important. I’m a member of USAWG and love the interactions there. I do think the tactic of official coalition building with other disease groups/patient communities is a good idea, but should perhaps be clarified, remain transparent, and proceed from a place of recognizing the unique neglect/funding crisis faced by the huge ME community.

What should our movement look like?

  • “We need to circle back around to the idea of a leaderless movement.  Think ACT UP.”
  • I value empowering advocates to work towards stated common goals in their own ways, based on their personal strengths and regional context. I believe decentralization of decision-making is part of empowering members.
  • I don’t require democracy always.  Not everyone needs a say all the time so long as the mission is clear and has taken wide opinions into account.

Global inclusion

  • Propagation of the whole idea on by volunteers by their own means (Facebook groups self-guided by volunteers, etc) especially in foreign countries which are out of reach of #MEAction members
  • Outreach to non-english speaking countries to access both ESL and non-english speaking PwME and also researchers particularly in Japan, Germany and Spain. This would serve to enlarge the community and to isolate the UK establishments views toward PwME. 

Positions

Below is a range of opinions on disease definition from the Values and Policy Survey. The feedback has been moderately edited, clustered and arranged according to theme. 

  1. PICK SOMETHING
  • I’m open to different views but I think we need to take a stance on this.
  • We need to agree on a disease definition as I’m sick of it taking over other important work we need to be doing.
  1. DON’T PICK SOMETHING
  • There is still a lot to learn and committing to a set position now could limit our ability to respond reasonably to future research. Different criteria can be useful in different circumstances (e.g. in research intended to identify sub-types it can be useful to start with a looser entry criteria).
  • The science has very far to go before we know what we are dealing with in this illness (or even cluster of related illnesses).  We need to keep the umbrella very large until more is understood.
  1. ICC IS THE ONLY ACCURATE DEFINITION
  • The disease definition must be the ICC. It is the only criteria that truly represents ME and nothing but ME. 
  • The ICC is the best current definition we have for ME. For the time being, it is what we should be using for both clinical and research criteria. It is our “gold-standard.”
  • If you don’t use the ICC, then you aren’t referring to ME and shouldn’t use that disease name.
  • No exceptions can be allowed, because using anything but ICC only give us a mix-up of diverse “fatigue” conditions.
  1. SILVER BULLET
  • Pushing for ICC will mean PACE, magenta, fitnet and all the lousy BPS research will be rendered invalid in one fell swoop and make dropping BPS/MUS/FND easier.
  • The big tent policy helps absolutely no one under that tent. The only people it does help is the proponents of the BPS model of ME who also encompass all sorts of fatiguing illnesses. It plays perfectly into their hands and as such condemns all patients under it to decades more confusion and abuse. If we want proper medical recognition then we have to be clear what we are fighting for, ME and ME is ICC.
  1. PREFERRED COMBINATION
  • Disease definition should be either ICC or Ramsay. Use ICC or Dr. Hyde’s Nightingale definition. It should be CCC or ICC.
  1. NOT SEID!
  • SEID definition is unclear, not restrictive enough, and will perpetuate the dismissal of neurological ME. It is a repackaging of CFS. It should be opposed. 
  1. HIERARCHY: VALID, INACCURATE, BAD-FAITH
  • A position on disease definitions should be organized upon a scheme of valid/acceptable, inaccurate/incomplete, and bad-faith definitions. 
  1. Valid (e.g. ICC, CCC, Ramsay)
  2. Inaccurate (e.g. Fukuda, SEID) 
  3. Bad-faith (e.g. Oxford, Reeves)
  4. MINIMUM REQUIREMENT
  • Don’t worry about disease definition too much, SEID, ICC and CCC should be the minimum requirement to capture the patient group.
  • CCC and ICC are popular, but SEID has a better scientific basis. No reason to exclude any definition which requires PEM.
  • Focus on PEM in definition.
  1. ADAPT WITH RESEARCH
  • Not interested in disease definition at this stage as the research is advancing fast and a biomarker should clear everything up. It causes too much in-fighting.
  • Disease definition should adapt with cutting edge research.
  • Keep developing ‘disease definition’, according to latest (ratified/ verified) findings.
  • Disease definition should be left to experts (i.e. clinicians and researchers)
  1. MINIMUM REQUIREMENT & ADAPT WITH RESEARCH
  • The science is not sufficient right now to take a stand to support any one case definition, but we should insist on the use of only those definitions (for research and diagnosis) that recognize PEM and neurological dysfunction (ie, autonomic and/or cognitive) as required symptoms. 
  • We should certainly take a stand on the need for NIH and other agencies to address the lack of an appropriate, standard case definition for use in research. Again, this comes back to what the science says and how ME research suffers when bad science is the norm.
  1. DIVIDING OUR COMMUNITY
  • I don’t care about definitions, inclusion or exclusion, except I do care how the debate is hurting more than helping. I want understanding and acknowledgement. Less ostracization and wasted time/effort on politics.
  • Disease definition unfortunately seems to be dividing the community. It’s a very touchy subject.
  • I also like the broader approach to bring people worldwide together. But the “ICC only gang” makes life increasingly difficult.
  • “I think the whole ME/CFS/FM/SEID thing is silly – you can have different diseases with varying stages of severity – and having four people in our family sick – I don’t look down or exclude the mildest (in some ways – it is very hard for him because he is still trying (and failing) to lead a normal life) or venerate the sickest.
  • I would like to see less focus on names (that war has been going on for decades) and more focus on cooperation (we are ALL sick), funding research, educating the public and professionals (which should include K-12 and colleges and universities).  Once they figure out the disease – the name and any categories will fall into place.”
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