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Strategic framework for activism with practical advice

Discussion in 'Advocacy Projects and Campaigns' started by Samuel, Jun 7, 2018.

  1. Samuel

    Samuel Senior Member (Voting Rights)

    /Movement Action Plan/, by Bill Moyer.





    The intensity of public feeling, opinion, and upset required
    for social movements to occur can happen only when the
    public realizes that the governmental policies violate
    widely held beliefs and values.


    i want to get a good discussion going on this topic.


    1] for each of stages 2 and 3, read the first paragraph, bullet points, and conclusion paragraph
    2] skip everything else

    Last edited: Jun 16, 2018
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  2. Samuel

    Samuel Senior Member (Voting Rights)

    hi all,

    were you able to skim or read the framework? do you think it applies? what stage do you think we are mostly at? do you think we need to prepare to take advantage of events so we can take off? do you think we can skip doing more stage 2?

    i think we have been in stage 1 until recently. royal free and incline village and xmrv were blips in that they did not move us to stage 2. justina pelletier [for the anti-misopathy movement] and karina hansen [for the m.e. movement] were not prepared for and did not change movement status. pwme are dying left and right and the world is not aware.

    i think we are in early stage 2 for almost all of our goals. i think we have a strong tendency to think that we are more progressed than we are. [maybe we don't notice the huge numbers of things that need doing, because they are not in a list in front of us? kinda like opportunity costs being invisible.] qmul showed scientists that institutions failed. more of this kind of stage 2 activity will be useful.

    i think our sights need to be raised. http://thekafkapandemic.blogspot.com/2015/11/make-it-unthinkable-please.html .


    do you think zinging a bad guy on twitter is progress? is it justice? do you think the recipient needs convincing? do you think it's worth it for convincing onlookers?

    what is your vision for the m.e. movement? what will turn it from a community into a movement? are you ok with a community? do you think we are a movement?

    where are your sights set when it comes to health, science, and human rights? what about justice and social acceptance and services for housebound and bedridden? do you think we should emphasize the deaths more? are you satisfied with the rate of progress? do you think we can only expect so much? do you think unconnected newcomers can join us in large numbers? i think they can.


    i do not have the health resources to participate much. but if the moyer framework has value, then i think it would be great to discuss it. if it does not, then i think it should be rejected explicitly.

    Last edited: Jun 13, 2018
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  3. Graham

    Graham Senior Member (Voting Rights)

    Well, I started to read it, felt mentally bloated, looked at the scroll bar on the right, realized how much more there was of it, and lost the will to live. I suppose that's just a phase in "Reading The Movement Action Plan." So many words, so little content.

    But that's a shame because the core idea is sound and useful, as far as I could see. I think we were at the stage of feeling "failure" (stage 5) – not that we had failed, say, to show PACE was rubbish, but that doing so failed to have a quick and significant outcome. But I also think that it was a key trigger (along with Unrest and a number of biomedical research projects) that tipped the balance, and started us along the road of winning public opinion.

    The question is, is it worth me trying to read any more? Does it actually come up with useful suggestions, or do I have to condense every 4 pages into a sentence?
  4. Samuel

    Samuel Senior Member (Voting Rights)

    i should have very clearly stated that it was a while back. i had not realized or remembered that it was long. remiss of me not to mention.

    do not try to read from start to finish.

    1] burn the values and sensibilities paragraph i quoted in the first post into your memory, then click on link
    2] skip everything except the bullet points and conclusion for stages 2 and 3
    3] you are done!

    it sounds to me like you have already read the good parts.


    stage 2 bullet points i think are relevant.

    for example, americans can make a complaint on the ada complaint web page when they are mistreated in a hospital, or not accommodated [such as the lack of a place to lie down in the er].

    hostility and harmful mistreatment at hospitals happens so frequently that some pwme have vowed never to go to a hospital.

    the public is completely ignorant that it is at that level of brokenness. by making an ada complaint, we point out that the system is broken.

    hospitals are still recommending cbt/get. this is not an improvement over exorcism.

    i think exorcists acknowledge you are sick.


    i think our tendency is to think we are in a later stage than we are. we keep thinking "we've reached critical mass now". imo our big successes have come from realizing that we have not.


    i really need to point out that we also need an anti-misopathy movement.

    i have read that @JenB posted a picture of a snake in segments, with each segment being a disease, saying "join, or die".

    an anti-misopathy movement does that and /much/ more. http://thekafkapandemic.blogspot.com/2013/10/why-some-diseases-are-wronged.html

    Last edited: Jun 16, 2018
  5. Graham

    Graham Senior Member (Voting Rights)

    "I should have ..." Hmm, I know that feeling so well.

    Thinking a bit more about things, while we were chasing PACE for further information and data, then producing analyses, we had very clear goals and fairly well-defined obstacles. When we had finished the analysis etc., suddenly there wasn't a clear direction to go any more. I think this is a key factor in the sort-of empty feeling at the end. Suddenly it is brought home just how much more work there is to be done, and it is much less clear what would be most effective.

    Also it needs a complete change of tack, from cold analytics to PR.

    I don't think we are anywhere near critical mass, and one aspect that an American analysis totally fails to cover is the old boy network that is still rampant in areas of the UK - particularly in medicine and politics. I suspect this is one area that David Tuller finds much more of a problem than he imagined.

    But we are at the stage where we have the evidence, the argument and the analysis, and are ready to push for critical mass.

    But in the UK, how?
  6. Samuel

    Samuel Senior Member (Voting Rights)

    hi @Graham,

    1> I don't think we are anywhere near critical mass...

    2> But we are at the stage where we ... are ready to push for critical mass.

    not sure what you mean.
    Last edited: Oct 12, 2018
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  7. Graham

    Graham Senior Member (Voting Rights)

    I'm UK based, and was part of a group working on the PACE trial - a £5 million study trying desperately to prove that CBT and graded exercise could help and even cure ME. If you look at David Tuller's stuff, you'll see that it was complex.

    We have now produced a number of articles and studies showing that the claims were false, and NICE, the body that advises doctors in the UK on what treatments are appropriate and permissible under the NHS, is looking afresh at its advice for ME.

    In America, partly due to the work done on PACE, they have decided that studies by UK psychiatrists (using their "Oxford criteria" to diagnose CFS) are misleading, so no longer use them, and, in theory, no longer recommend CBT.

    In America, you are further along the road to achieving critical mass. Patient involvement in a number of public meetings by NIH etc. is not something that we get in the UK: the involvement of more patients in the consultation by NICE over its new advice is quite a step forward.

    That's a very glib (and inaccurate) summary of where we are. Is that what you meant?
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  8. Allele

    Allele Senior Member (Voting Rights)

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  9. Allele

    Allele Senior Member (Voting Rights)

    I want to clear up a misconception that appears to be worldwide regarding the state of things in the US for ME patients:

    Yes, messaging-wise, and to a very small degree politically, we are way ahead today compared to even a few years ago.

    But in terms of real patients seeking real medical care, we are as bad as anywhere. Unless you have tens of thousands of $$ to throw at a private medical practice, most people are out in the cold with regard to treatment, and at best in a constant war with insurance companies to "approve" your GPs recommended tx. Paternalistic disbelief still abounds, and there have been instances of medical kidnapping here as well (though I think not yet for "CFS".)

    I'm very excited about the more recent wave of interest and the important shift in narrative, but patients are still swimming up a shit stream with one arm.
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  10. Samuel

    Samuel Senior Member (Voting Rights)

    hi all,

    if it is possible, i'd like more engagement in this thread.


    1] for each of stages 2 and 3, read the first paragraph, bullet points, and conclusion paragraph
    2] skip everything else

    i.e. read 4 paragraphs + bullet points.

    the link again: http://www.indybay.org/uploads/movement_action_plan.pdf

    p.s. bill moyer is not the journalist bill moyers.

    Last edited: Jun 16, 2018
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  11. Allele

    Allele Senior Member (Voting Rights)

    @Samuel , Thank you for breaking it down, I was overwhelmed by the sheer scope of the document.
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  12. Inara

    Inara Senior Member (Voting Rights)

    Hi @Samuel, this is an interesting document, and I think very useful for our purposes. I felt like the others: I was overpowered by the pages. For me, it will be a "project" to read it. But I think I shall, at least in part.

    What I found helpful as an overview was this picture:[​IMG]
    Maybe you or someone else can say some words about the single stages.

    Indeed, we need an anti-misopathy movement - sick and disabled people mustn't be discriminated.

    Mahatma Ghandi is supposed to have said:
    "The greatness and moral progress of a nation can be measured by how they treat their animals."

    And Helmut Kohl said (1998, former German chancellor):
    "The humanity of a society is shown by how it deals with the weakest members."

    This tells us how it is in our societies - no greatness, no moral progress, no humanity.

    I didn't read this properly:

    1] for each of stages 2 and 3, read the first paragraph, bullet points, and conclusion paragraph
    2] skip everything else

    (by @Samuel, first post).

    This will work. :)

    Attached Files:

    Last edited: Jun 23, 2018
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  13. Inara

    Inara Senior Member (Voting Rights)

    Wow, @Samuel:
    True! :)

    It needs to be shown the system is broken. But this is infinitely difficult I think:

    The existing propaganda is powerful. The value "co-op" is deeply rooted. Coming with this is the mechanism of ignorance and displacement: People don't want to see there is bad right in front of them, they want to consume, they only want beauty and pleasure - which is quite understandable in a world where you have to spend most of your life time doing senseless things (working à la "paid employment"). You need some numbing to endure this fact.

    Adding to this the "positive thinking conviction" which leads to further ignorance and displacement of things that seem unpleasurable.

    Third, we mustn't forget humans' instincts: Above all, we have to survive. Many people today are struggling to survive. There is no room for others' problems there.

    I say this is systemic: Make the people busy and they won't be able to think about political things, about problems, about misstands, and they won't revolt.

    How shall all this be overcome?

    Behind all this, most people also have the need for humanism. As a society we want humanistic values - even if today we only have the illusion of humanity. Therefore, pointing out things that breach these could be helpful.

    How can we do that?

    Complaints, lawsuits....But how will this become public?
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  14. Inara

    Inara Senior Member (Voting Rights)

    I have copied the first two stages here as advised by Samuel:

  15. Samuel

    Samuel Senior Member (Voting Rights)


    > this is an interesting document, and I think very useful for our purposes.

    i think we need to think in movement terms.

    at the current /rate/ of progress, most of us will die before there is enough meaningful change to make a large qualitative difference in the quality of our lives.

    without /acceleration/, most pwme will not get enough change to feel like they almost have normal human and civil rights. they will not get enough of a fraction more of health to get to the next qualitative label [e.g. to get to mild from moderate].

    we can fix this by raising our sights to the level of movements.

    we have been stockholmed and overton windowed. too often, as a community we are satisfied with crap. we think please sir may i have a retraction.

    i really don't think our cause, and the cause of misopathized diseases, is small. it deserves to be on the mind of every active citizen as a top agenda item.

    > For me, it will be a "project" to read it. But I think I shall, at least in part.

    thank you.

    for the tldr, you only need to read stages 2 and 3. skip everything else. skip case examples.

    i think that is less than the size of one full s4me page on any thread.

    > What I found helpful as an overview was this picture

    here is another overview: https://i1.wp.com/www.amendmentgazette.com/wp-content/uploads/2014/01/EightSteps-Moyer.jpg

    i think it is from moyer's book about democracy.


    while they are useful, the danger to the overviews is that we try to fit our community into higher levels.

    we keep thinking we are more advanced than we are. we have tons and tons and tons of goals that are at stage 1. at our best we are at the beginning of stage 2. we did a bit of stage 3.

    we keep thinking real change is around the corner. but we are not prepared for stage 4. another karina hansen and what will be the result? the same.

    another justina pelletier? the same. another inconvenient-to-authorities disease? the same.

    yes, we breached air supremacy in uk media. we awoke a chunk of parliament. we got the nys doh website to be rational. these are huge. they required excellent sustained work. necessary and appropriate.

    but overall policy will not change qualitatively in practice within most of our lifetimes until we accelerate.

    it remains true that mild and moderate pwme are only one exposure from becoming severe. people will be incarcerated or dragged away for being sick. emergency rooms have not the slightest clue what to do with pwme.

    people are dying. the world does not know this.


    i believe there's more stage 2 we can do. even stuff you might think is crazy. why is qmul accredited? they are not /acting/ like a university.

    and stuff less crazy at the international level we rarely talk about. at least 3 things we can do at the un, for example. probably much more.


    > Indeed, we need an anti-misopathy movement...


    > And Helmut Kohl said (1998, former German chancellor):
    "The humanity of a society is shown by how it deals with the weakest members."

    Last edited: Jun 28, 2018
  16. Inara

    Inara Senior Member (Voting Rights)

    After further reading on this forum and my own developments regarding authorities I definitely agree we're in stage 2 - not further.

    Stage 2 is about build-up of stress in the system.
    • to document that a serious problem exists,
    • to maintain an active opposition no matter how small.
    What ways do we have to document there exists a problem? Can we collect a list here? Ideally, this list will contain points from many countries. We should also consider things that, at this point, seem unrealistic, crazy, ridiculous, whatever. Let's do a brainstorming. There are no restrictions at this point. Afterwards, we can make a ranking.

    This list from the document gives some categories. Let's find concrete examples from each of these categories.

    • Undertake research to prove that a problem exists which violates social values and sensibilities.
    • Prove that the official doctrine and policies of governmental powerholders and institutions violate society's values and the public trust. This must be not only from researching the facts but also from actually trying every avenue for official citizen participation in the democratic process for deciding on social policies and programs, and proving that they do not work.
    • Testify, undertake challenges, and file complaints in every branch of the bureaucratic machinery at the local, state, and federal level of both public and private bodies that are supposed to be open for citizen participation and redress.
    • Prove that they are “kangaroo courts”. Go to every decision-making body whether welcome or not.
    • File suit in the courts.
    • Take their concerns to city council, state assembly, and national Congress. These programs are usually primarily carried out through the auspices of professional opposition organizations.
    No. I don't see this. Definitely not. BUT we are in Stage 2, not 1, which I view as a huge success!

    No, it is huge. It's scary, at least to me. It looks like a huuuge mountain. But if we start with concrete ideas that can form into actions...that's a start.

    Now, what can we suggest to accelerate?

    Let's make stage 2 concrete. Let's increase the pressure.
  17. Clara

    Clara Established Member (Voting Rights)

    I am just going to address this one point for now before I have read the article.

    If we want hospitals and doctors to change their treatment of ME/CFS, we have to target changing their top information sources. From what I understand from doctors themselves, one of doctors' #1 goto is UpToDate. There are a few competitors and other sources targeted for doctors.

    I know we have gotten changes made to a number of state and federal government Web sites, there is the IOM report, etc. BUT doctors do not look at or use those sources like they do with UpToDate. These have different audiences and contexts.

    So how effective are the following activity options?

    1) Arguing with and about CBT/GET authors on Twitter and elsewhere.

    2) Writing to UpToDate strategically, backed up with evidence, helping them do as much of the work more easily, and via doctors who already have established working relationships and credibility with them (Anthony Komaroff?).

    I just looked up CFS in UpToDate and there are at least two articles that have been updated as recently as April 2018 since the last time I checked a couple months ago. Anthony Komaroff is the Section Editor. One of these articles has sections on CBT and GET under "Potentially Beneficial Interventions", and no others listed. But it is behind a paywall so can't see what it says.

    I am being optimistic and idealistic but if we change how CBT/GET is addressed in UpToDate and provide alternatives, doctors around the world will be looking up that new information that day and every day forward.
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  18. Inara

    Inara Senior Member (Voting Rights)

    Ok, just a brainstorming from my side with a focus on Germany because I don't know the other countries well enough.
    • research: need scientists/doctors/other professionals that write about what research has shown about ME; also address "expert opinions" by writing articles etc.
    • need VIPs that testify and/or attack "BPS expert opinions"
    • show that BPS is not a commonly accepted model in the scientific world or medicine or psychology; show that BPS is a belief
    • aim: show to public that "famous experts" (famous for authorities, insurers, courts,...) are no experts at all
    • file suits in court: if it's not expensive, as an individual, even if you know you could loose; if it shows that the official doctrine and policies of governmental powerholders and institutions violate society's values and the public trust it will help
    • more expensive cases could be stemmed by the community; solidary fonds (i.e. a fund from which important and promising cases could be paid)
    • make a suit public and report to show that all this violates society's values
    • demonstrations/actions like MillionsMissing
    • develop a platform where information aboul legal stuff can be obtained so that individuals know how to file a suit, without a lawyer where possible
    • find lawyers etc. who would engage
    • make more cases public where social benefits were denied, no matter why (maybe we can have a rememberance page with people who died from ME and a page where people are listed who were denied benefits)
    • report doctors
    • "attack" guidelines (-> research; scientists/doctors that comment etc., patient organizations), like DEGAM and "leitlinie nicht-spezifische funktionelle und somatoforme körperbeschwerden"; what can individuals do?
    • remove CBT, GET
    • comments on well-known medical homepages (e.g. Dt. Ärzteblatt)
    • wikipedia
    • me-pedia
    • Twitter (I think arguing with BPSers on twitter can be part of building up pressure)
    • UpToDate
    • where else can be complaints filed?
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