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Advocacy Brainstorming: The Thread on Threads

Discussion in 'Action Alerts and Advocacy' started by alex3619, Feb 18, 2012.

  1. alex3619

    alex3619 Senior Member

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    For many years there has been debate on where advocacy should be going. At the moment we have organizations pursuing their organizational agendas, individual advocates pursuing their individual agendas and nobody has a big picture, or at least no strategy that is comprehensive and well recognized. We are often heading off in different directions, trying to put out the small fires and having little idea on how to tackle the raging infernos.

    Its about time we had a big picture view of where advocacy should be heading. Everyone would agree with statements like: we need more money for research; we need a cure; we need better medical education, we need to stop psychobabble. However, how do we achieve those ends? How do we set sub-goals? Are some goals conflicting with others? How do we co-ordinate advocacy? How do reach more patients who seem to be unaware of the wealth of information on the net? There are lots of interesting questions, and we have not had much debate on many of them.

    With this in mind I want to make this thread a brainstorming thread. Don't discuss anything in detail (a few paragraphs at most) and just list things you would like discussed. Then we can have threads on strategies for dealing with each issue. Finally we can get down and discuss tactics in threads we are not even currently thinking about. Please post your ideas on the future of advocacy here. If you want to say more, then post the idea here and start a thread, or link to an existing thread. If you start a new thread at some point in the future, come back and post a link to it here somewhere.
     
  2. alex3619

    alex3619 Senior Member

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    Topic Links

    (This is blank for now, its a place that summary information can be added at a later date, including links.)
     
  3. Esther12

    Esther12 Senior Member

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    I would prioritise the need for patients to be treated honesty, and for accountability to be imposed upon those with power and authority over patients.

    eg: If false or misleading claims are being made to patients, this should be a disciplinary matter. If psychosocial factors are viewed as important, then any psychosocial harm done to patients should be treated as important. There needs to be a regulatory framework around CFS that ensures that dishonest claims, like Crawley's that PACE showed a 30-40% recovery rate, result in people being removed from positions of power and authority. Claims about prognosis, efficacy of treatments, cause of disability, etc, cannot be justified pragmatically, but should require compelling evidence that they are actually true.

    My view of the responsibility doctors have to patients might conflict with those patients who want more freedom for doctors to promote treatments with little supporting evidence. I'd be okay with experimental treatments so long as it was made very clear to patients what the state of the evidence was, in order for them to be able to provide genuinely informed consent, but overall, I'd like to see more restrictive regulation of medical practice, particularly with regards to psychological and behavioural interventions, where patients seem commonly assumed to be unable to decide for themselves how to best live their own lives, even if there is no compelling evidence that this is the case.
     
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  4. Marco

    Marco Old blackguard

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    As a starting point, any future study that does not identify and provide a seperate analysis for a subset of patients meeting the Canadian criteria, should be dismissed out of hand by any ME/CFS charities and advocates.

    For the time being they can decide for themselves how relevant they consider the prior body of research.

    Under the proposed new system, the relevance (or lack of) of pre CCC research will become apparent.
     
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  5. markmc20001

    markmc20001 Guest

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    Heya Alex. Off the top of my head, it seems to me efforts should be focused on three areas mostly.

    1) Developing good objective testing for cognitive dysfunction. Cognitive dysfunction is extremely disabling and has no widely accepted test. Maybe there are people working on this already, If they already got momentum and mean well, maybe we can help out somehow. Funds, people, brain power, etc.... facilitate bringing the good guys together and keep out the bad guys. Somebody needs to be a strong leader who can spot the special interest bullshit and stay the hell away from it. Using concensus carefully as needed, but not get derailed by the special interests.

    2) Work on gathering the best nutrional strategy knowledge for different subsets of patients. Figure out how the genetics and symptoms can be resolved with supplements with a more science based approach. Essentially take what RIch, Freddd, Martin Pall, Myhill, Klinghardt, and everybody is doing and distill it down to what works for each patient based on genetics and symptoms. (For instance you got migranes, sinus infections, and these genes. Try one of these two treatments etc....) Real world solutions, for right now.

    3)Letter writing. However, somebody needs to come up with a list of issues that are most effective and worth writing letters for. Supplements need to be guarded with both guns blazing. Other stuff also, but a list of suggestions to which identifies important issues worth writing letters for.

    For instance, there is a bunch of garbage science that is going to keep coming out to make us look like bozos. However, we are not going to stop that because it is in the special interest's business plan. However, some things affect public perception or docotrs perception that may require a educational response and not a pissing contest with a snarky blogger or a co-opted journalist working for some mainstream newspaper.

    Pursue the above realizing it will not be well received, and possibly thwarted, by the special interests.

    Don't be naive: Keep in mind the special interest work outside the rules and lack morals that average people have. They are deceptive people that can lie and have no boundries.
     
  6. dmbaken

    dmbaken

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    Hi,

    Great thread Alex. I really hope people (including me) can follow through with your intentions.

    One of the reasons I think it is a great idea is that ME suffers from a lack of energy. That is, the people who know about it and care don't have much energy to make a difference (either they have ME or they are carrying more of a burden for someone with ME). Given this we need to be smart. Smart is putting our efforts where they will bring the most benefit. Smart is also sharing resources - when someone develops a resource (e.g. a post for a local stall) it is shared with the world wide community. A section like this has the ability to bring these sorts of things about.

    For me the key issue comes down to this - people have to care. By people I mean everyone - us, decision makers, and the general public. If they care then they will do their best to make sure all the rest happens (e.g. doctor education, wll funded studies, patient care, payment for the meds which when they come are likely to be costly). I know that in the country that I live the meds are not likely to be funded unless people care enough. For example people care about cancer so alot of money is put into it.

    In this world of competing demands there is a lot of competition for what people care about. To make it more possible for people to care we need them to understand the impact of ME. I think the reason people care about cancer is because they understand it.

    Therefore I think alot more effort needs to be put into educating the public about ME. If the general public understand and care they will donate and pressure the people who make the decisions. Recently in my country a very expensive drug was funded publicly, not becasue the evidence supported it cost/benefit but becasue of public pressure.

    My thoughts

    Don
     
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  7. Sean

    Sean Senior Member

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    1. Stratification of research findings according to patient selection criteria.

    2. A ship load more research funds for biology based studies.

    3. Critical independent review of the definitions and measures of 'normal', 'recovery', and 'cure', used in psycho-social based studies.

    4. Most importantly, proper objective outcome measures, including assessment of any post-exertional features, must be a minimum requirement for any study in this field. Demanding this is both good science, and good advocacy. Nobody can legitimately argue against using properly objective outcome measures. Any less a scientific standard is completely unacceptable.
     
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  8. Ember

    Ember Senior Member

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    Convince website managers to update and define their terms. For example, the banners used here, ME/CFS (Chronic fatigue syndrome) Forums and Chronic Fatigue Syndrome (ME/CFS) News, are inaccurate. The term "myalgic encephalomyelitis" should be included.

    To quote drjohn,
     
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  9. SpecialK82

    SpecialK82 Senior Member

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    Great Thread Alex! Couple of thoughts.....

    Most of us agree on probably 90% of the issues, we need to ban together to address these issues, all vote in a united way for contests, etc., instead of continuing to focus on the 10% that we don't agree on - it's negative but much worse it's not productive. Maybe all forums and associations/orgs can agree on that??

    We could interview other organizations that represent uncommon/misunderstood illnesses and learn from their strategies.

    We could somehow track all of the funding available to us, and make sure that researchers are using everything that is out there. NIH has time and time again said that researchers aren't coming after the money.
     
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think these are good ideas.

    Well, obviously that is NIH BS. Pat Fero's reports establish clearly that though NIH claims it funds ME at $6M per year, they actually only fund $3M. Cort has noted that only something like one in seven grant proposals for ME research is funded by NIH. And there would be many more applications if NIH hadn't driven hordes of excellent researchers away by not even funding one penny of ME research for many years.
     
  11. SpecialK82

    SpecialK82 Senior Member

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    Thanks Justin.

    I also think that we have to get our healthy support people involved - if we really want to drive this forward, we need "healthies" to do some of the heavy lifting.


    I agree Don, I think if we could learn from other charities - what have they done to get their message across? How do they garner support? Much to learn so that we can work Smart.
     
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  12. markmc20001

    markmc20001 Guest

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    Sounds like a slippery slope.

    This seems like one of those laws "sold" to the public as being beneficial at first. However, after the lobbyists get done with the wording it ends up being a way to disapline CFS doctors.

    Kind of Like.... That doctor is not following the proven vaccination protocol. They must be disciplined. Or that doctor is not following the proven Lyme treatment protocol, they must be removed from practice.

    MIght sound good in the beginning, but wait to see how it gets abused later down the road once it is implemented.

    Good luck proving disability. ME/CFS is disabliing. You are saying without ME/CFS tests, patients should have to prove they have it? explain how that can be done please? I know, I'm in that nightmare now. There is no good test to measure "chronic fatigue". Whatever that is....Epsecially the type where you have pressure in your head and can't think or accomplish anything on a consistant or prolonged basis.
     
  13. illsince1977

    illsince1977 A shadow of my former self

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    That is a good point, Justin. Just like in the alternative energy sector, without consistent funding start-ups can't survive. People need to know the funding isn't going to disappear on them or they will choose an easier path.

    Don, I totally concur the key is to get people to care. Unfortunately, I'm pretty discouraged about that coming about. In my long experience people turn a blind eye whenever possible. Even my family has chastised me for broaching the topic of advocacy and the crying need for the world (them included) to understand what a travesty society's treatment of this illness (and me as a corollary) is. "It's a downer," and "if you want people to like you, you shouldn't talk about it", I've been told. The world CAN turn its back and so it does. So, I think you are right, this is key. I just don't know how to get there from here. I can't even get through to my own children.

    I hate to say it, but I think the kinds of things that have unfolded over the past year or so have been very damaging to our cause and it would be advisable to avoid getting behind any one person or institution that the community hasn't vetted in some way, shape or form in the future, in the interest of future progress toward answers. Maybe our efforts should be focused on a "Manhattan project" of advocacy (thanks for spearheading this, Alex), since we are all already painfully aware there is no cure out there to get behind. If we get distracted by what one doctor or researcher or institution's opinion about what the cause of this illness is, we risk being burned, yet again. I know I have many times in my life, and all that accomplishes is making me look like a fool when once again I am proven wrong, as I have been more times than I can count.

    There isn't even a name to get behind. Talk about a reflection of the way society views us. We aren't even accorded the respect of a name for this illness. But respectfully, Ember, I don't think yet another fight within the community about whether one has ME or CFS is going to get us to that end. I understand that many feel very passionately about this and I really mean no offense to anyone, but I don't think focusing on that will further our cause. I don't care what this government or that government or this researcher or that researcher calls it, we all have the life altering, life stealing disease that never ends. It is only the lucky few who have been misdiagnosed and finally find out that they really had this, that or the other thing, who escape the unavoidable truth that this is the life stealing illness that doesn't go away.

    I really want to be able to trust anyone or anything who speaks for us. For me at this point, this is paramount. So maybe what we need is a vetting process for anyone who claims to speak in our name. Unity would be great, but we need to be able to trust the effort in order to be unified around it. There is strength in unity, and without unity and trust, advocates will become disillusioned and burned out. The cause will peter out due to lost momentum, because basically we're all sacrificing what little energy we have left, and possibly even sacrificing what little of our health we still have, to make any efforts at advocacy. This is a tremendous handicap in achieving a sustained effort necessitating extraordinary resolve. Let's not handicap it further by lack of unity.

    The more we can spread the work out and encourage one another for our efforts, the better chance we have at succeeding.

    I think something like $5 billion dollars a year is being spent on HIV/AIDS. Guess if we were dying, we'd be worthy of an iota of that level of attention, but living a miserable life is OK by the world. Mortality seems to be the only metric that counts in this world, otherwise "It's your problem, just live with it." is the prevailing sentiment. I don't want anyone to die to have to wake the world up (not that some haven't already). Why must it be that way?

    I wish I had something more constructive to contribute to the discussion. Sorry if my tone is too negative. We need to bolster one another up to keep the momentum going. And I wholeheartedly support any efforts at raising awareness and advocacy.

    -77
     
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  14. WillowJ

    WillowJ Senior Member

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    The healthy support people that I know are already doing so much just taking care of us. We need to somehow engage people who are not yet involved.
     
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  15. Esther12

    Esther12 Senior Member

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    I don't think that patients should have to prove their symptoms - as you say, they will often have no way of doing so. However, I do think that when doctors make medical claims to patients, they should restrict themselves to those claims which can be supported by clear and compelling evidence, or else be sure to explain the uncertainty and conflicting evidence. Patients should be able to trust their doctors to speak to them honestly and clearly, and that CFS patients are now unable to do so is a real hardship imo.

    This would place greater restrictions on the way in which doctors can treat their patients, and I think that would be a good thing.
     
  16. markmc20001

    markmc20001 Guest

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    That would be a nightmare for every CFS doctor, Lyme doctor, autism doctor, naturopath, and other alternative healer currently in business. You know the ones that are in such demand and that are actually helping people.

    The medical industrial complex is always going to manipulate the concensus, so you are suggesting a standard that would be impossible to meet in todays current medical research/political environement.

    I can't imagine how that would be a good thing from a patient perspective. However, the medical industrial complex would certainly love taking out all those true healers in one fell swoop.
     
  17. markmc20001

    markmc20001 Guest

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    Forgot to mention doctors using methylation, heavy metal chelation, alternative diets, You know all the treatments patients discuss on the forum here that is not accepted or recognized as treatment by our governments, insurance companies etc..
     
  18. Christopher

    Christopher Senior Member

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    As much as some people dislike what the CAA are doing, the truth is they are the most organized and powerful ME-CFS organization around. Instead of trying to compete with them, maybe we can try to work with them and influence them with our ideas and suggestions.

    Also, we should try to get more people to the CFSAC meeting in DC. People can either go in person to show their face to the committee, OR they can submit audio or video testimony letting them know why you can't be there in person. The more people testify the better. The CFSAC meeting is held twice a year every year, with the next one being sometime in May.

    We might also have an up-to-date quick-glance map of where ME-CFS research is taking place throughout the world and what the research is about, to keep patients informed about what's going on locally and world-wide. The more funding for the project the larger the marker on the map. I'm not sure if this can be done through a Google Map API, but I wouldn't mind trying it out if people thought it were a good idea.

    So in Norway you would see where the rituximab trials are taking place. In the UK you'd have Enlander's visit. In the US you'd have MT. Sinai in NYC, the WPI and Simmaron in Nevada, that sort of thing. An easy to look at reference for the current state of ME research.
     
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  19. Esther12

    Esther12 Senior Member

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    By 'evidence' I don't mean we should blindly accept the conclusions of poorly done studies with manipulated results, but I do accept your point about the dangers of those in positions of power manipulating what the available 'evidence' is and shows. It does seem that 'science' can be manipulated with distressing ease, particularly with a backwater and controversial condition like CFS... but evidence based discussion and debate is still the only way in which meaningful progression can be made. Sadly there is a lot of quackery around autsim, Lyme and alternative medicine, and I think that it would be better is doctors were required to limit their claims to that supported by the available evidence. There is a place for patients giving informed consent for experimental treatments, but this should again require that doctors are honest and clear with patients about the uncertainty and any conflicting evidence that may be relevant.

    I'm afraid that I don't keep up with those discussions. Maybe some of those treatments are helpful, or some are quackery - I do not know. I do not think that any of the clinicians who are making money from or promoting these treatments should be allowed to exaggerate their confidence in their efficacy though, or portray their treatments as being more strongly supported by the available evidence than they really are.
     
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Christopher,

    My feeling and i think the general feeling of the people who tried to deal with CAA in the long thread here on PR, was that CAA wasn't and isn't interested in committing to advocacy. They have declared that officially now, though they still represent to the press that they are an advocacy organization (it says this on the website and they won't change it). They grudgingly changed some of the most egregious stuff like promoting Peter White and his brand of GET/CBT. But they haven't changed most of the misinformation on their website. My point is CAA won't cooperate.

    There are a limited amount of slots for testimony at CFSAC. Not sure if they accept audio/video for testimony that isn't given at the meeting. At least, it hasn't been done yet, I don't think. Laurel sent in a nice video one time; i think it was played at the meeting, but not sure.

    I don't know if encouraging people to travel for CFSAC is a great idea, since it takes so much energy and expense. I definitely strongly encourage anyone in or near DC to go and also to lobby if they can. My offer to provide stipends for people to do these things is still open. Also, i think organizing a protest in one's own city is helpful.

    Good luck on the map if you go ahead with it.
     

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