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CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ecoclimber, Oct 5, 2013.

  1. Snow Leopard

    Snow Leopard Senior Member

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    I couldn't disagree more. Bullshit (exaggerated shock, fear and controversy) just turns people off.

    The problem with your message is that you are demanding action without truly expressing why (especially in terms of needs and feelings) and in turn others are confused as whether they should participate or not.

    You are telling everyone that we should fear the IOM. Why?

    Those who made this decision are just going to ignore you unless you state how you feel and why. For example frustration that we were not given what we asked for at the CFSAC meeting for example. Or perhaps a feeling of disempowerment as we (patients) want true involvement, not another demeaning name and case definition dictated from above.

    I would suggest opening up a dialogue with them, ask them why is this time going to be any different when the same patterns are being followed as the CDC definitions in the past? I think we need them to explain how they are going to avoid repeating the mistakes made in the past.

    You will note that this is quite different from fear and telling them that they must cease at all costs, just because we fear the outcome.
    leela likes this.
  2. Delia

    Delia Senior Member

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    Sadly, first they came for the sick and disabled. The proto-final solution program. It was easy. They already had them identified, and many in institutions. Or came and got them to 'help them" and put them in institutions.

    Just prior to the killings of the sick and disabled a campaign of political cartoons and editorials etc set out to depict them as a fiscal drain on society. It worked really well.

    The program was called T- some number. God damn I forget the number.i used to know a lot about this.
  3. Delia

    Delia Senior Member

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    Yes. These tactics no longer work for positive advocacy, crazy protesting has been co opted and neutralized for any use for progressive change.

    Yes it's effective for negative activism like Rush Limbaugh et al. But they are highly financed and not true grass roots movements. They appeal to people's meaner impulses.

    A strategy like the lay down for ME posted earlier in this thread is visual and effective. It's not offensive and can catch attention.

    An organized effort to do have multiple such lay-downs, wheel chair-in and such around the country or world on the same date, and using social media is worth trying.

    'Death panel" has become a loaded term. By the crazies. So now that a real death panel is here:no one will listen. They've been inoculated.


    Just like you can't call anyone Hitler, even if they are committing genocide, the words have become mere noise.
    beaker, leela and peggy-sue like this.
  4. Ecoclimber

    Ecoclimber Senior Member

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    You're not from this country so you don't know how the political process works in this country. You don't understand what goes on behind the scenes in the political advocacy arena. I am an expert having years of experience in political advocacy work. Year after year, we have seen how the ME/CFS advocacy work has failed. It's the same old same old expecting different results.

    I have relative that was at cabinet level postion in another democratic administration. I worked for a time in Washington D.C. for the government. I have worked on many political campaigns. I know the process.

    I have clearly outlined by actual documentation, statements and testimony over 10 years, IOM Panel policy and procedural directives on various threads. If that is not enough of a clarion call, I don't know what is. The clear salient points are highlighted as a road path to why everyone is at risk. 35 ME/CFS doctors are concerned. Hillary Johnson is concerned. Bob Miller is concerned. The leaders of our movement know the risk. The window of opportunity is almost over. The only way HSS will rescind is through masive and robust protest from this community that is effective or by national media attention as Bob Miller's hunger strike. It got the President involved because it embarassed the administration after promises were made. Act UP realized this. Lipkin realizes this. You don't have privy to the behind the scenes information as I do.

    Tom Hennessy knew how to advocate. He was an advertising executive who launched many national sales campaigns. His father was a lobbyist for Getty Oil and told him how to advocate on the hill. No Mas! The death panels was pitch by extreme right conservatives and tea party members to galvanized support against Obamacare. It was very effective to the point of almost causing default on the national debt by Shutting Down the Federal Government

    Death panels were used base on language where physicians determine whether they should allow an elderly person be given medication or not, whether this person should receive an organ transplant over another. They felt it gave the physicians and the insurance industry too much discretionary power of who gets treated or not.
    http://www.huffingtonpost.com/tag/sarah-palin-death-panels

    Sarah Palin clearly feels vindicated. In a video posted online Tuesday, the former vice presidential candidate suggests she was right when she predicted that the Affordable Care Act would lead to “death panels” of bureaucrats deciding who’s worthy of health care and who’s not.

    I also know that there are many members on here that support CAA. and would be reluctant to help out.

    But given your resistance so far, than perhaps you should lend your expertise in the matter and take charge. As for me, I realize that with this patient community, it is too late and I do not have the time nor the inclination to rebut these allegations. I have told others working behind the scenes awhile ago, I am vacating this forum. The cause is all but lost.
  5. Delia

    Delia Senior Member

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    Ecoclimber

    I too have past years of experience and still some contacts in DC. One who badly wants to help us.

    I want to help.

    I am terribly not up to speed on this issue!

    This forum seems Ill equipped to form a grassroots response. Those of us who want to help need a place to meet. I am lost in too many blogs and there's no time for me to figure out the good guys and bad guys out there.

    Is there a place to specifically meet and plan to follow through on these efforts.


    Though I wrote that I may disagree on the iom Death Panel thing. Even though it is a death panel IMO, I was cautioned by my DC friends the shameful way that the people we need to reach now put down Act up!

    So it is very confusing. I don't have the technical ability to set up a central blog for fighting this. I think that's what we need. And take a several pronged approach.
    beaker likes this.
  6. Andrew

    Andrew Senior Member

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    Because they don't produce professional level work, and because they show signs of being pawns to discredit controversial illnesses. The recommended SSRI for GWS. I challenge anyone (including the IOM) to go to pubmed (or anywhere else) to find a study on this topic.

    And btw, I mean Gulf War Syndrome. Not Post Traumatic Stress Disorder.
    beaker, Waverunner and Delia like this.
  7. Waverunner

    Waverunner Senior Member

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    Ecoclimber: I wanna thank you for the work you did and I truly hope, that you don't vacate this forum. I know how frustrating it is to see, how little some people understand and how much work and energy would be needed to change their minds. But I wouldn't give too much attention to these folks. Mostly they are a waste of energy. Many PWCs are also too ill. They don't have the energy to do anything except fighting through every new day.

    If there was a clear test for CFS and we knew more about the cause, it would be much easier to get things going. Another problem I see is the bad economic situation. Even the cancer field is complaining about a lack of funding. Government is wasting money all over the place but doesn't seem to care about the ill and how to cure diseases. If you want good funding as a scientist, you need 50% of your invested time just on filling out papers and applying. In addition to this, in 90% of the cases, the funds will only be granted if your concept is based on improving the understanding of something we already know. It's innovation hostile and doesn't take into account anything related to CFS. Patrick Soon-Shiong invested one billion into the future of medicine himself and is making unbelievable progress by implementing genomics and proteomics for understanding diseases. In addition to this the CFS field is highly heterogeneous. Some people are too exhausted to take part in a campaign, others are too lazy and others have a very pessimistic outlook. As you said, things are not looking very good. We don't have a clear patient community. We only have people labeled with CFS. But I truly urge you not to give up hope. We are moving ahead. Medicine is improving and I'm pretty sure, that genomics and latest diagnostic tools can help with CFS tremendously. We just need a little bit more time.
    beaker, peggy-sue and Helen like this.
  8. Keela Too

    Keela Too Senior Member

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    I acknowledge that - and appreciate that you (and others) have great dedication to the task at hand. Thank you.
    As I said earlier I will continue to do what I can.....
    beaker and peggy-sue like this.
  9. Ember

    Ember Senior Member

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    I don't have technical expertise to offer. But Caledonia might, judging from her recent posts here, here, and here.
    beaker and Delia like this.
  10. Marty

    Marty Senior Member

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    I pass over long posts; I hope you will read this one, as it is the only one I'll post and offers an entirely different approach to advocacy.

    Eco, I empathize with your frustration and appreciate your work. Maybe, though, the failure is the medium. I haven't seen these forums instigate thoughtful, goal directed ACTION, only talk. Lots of good words, but nothing that causes consequences to HHS or CDC. I check in every few months, and it is mostly new people each time. They talk for a while and then leave, realizing, I hope, that they have spent a lot of time but not done anything that caused a change. Only about 500 people from the US (half were from other countries) even signed the thank you petition to our docs. Devastating; the docs finally took a political stand for us and we didn't support them. Only 33 people signed the opinion poll on IOM. I think maybe it is time to realize that most of the advocates have left the room.

    That's not bad, though. Declining to waste their time writing letters to unelected people is a good thing. Being discouraged by seeing the patients cancel each other's positions is a good thing, i.e. with those who know the history refusing to cooperate with the enemy while others are sending in IOM nominations as requested. The internet is democratic, with those who are supporting random acts having equal say with people who form goal-directed, targeted strategy, leading to confusion among patients seeking direction. After 25 years, we don't even know how many people are sick, let alone how many are willing to take action to advocate against the CDC CFS stance. It is time to let go of the 1 million CDC myth and look at the only numbers we have, the handful of advocates who participate on the web, which at any one time is probably far less than 50 people. Some still think this is a medical education issue rather than a pure political fight. Advocates need to stop writing long explanatory letters and start applying sharp and targeted political pressure to HHS and CDC. When CDC accepts our researchers' authority in this disease, the fight is over. That was the point of the docs' letter, not that CDC had to accept any particular definition, but that they had to accept our docs' authority.

    Maybe we need to go back to the face-to-face physical support groups and conferences? With local leaders who can train and lead their flock in local political advocacy, building support for national advocacy. Without the anonymity of the internet but with personal commitment and acceptance of responsibility.

    Without an astute and knowledgeable national organization, I don't see how the fragmented efforts on the internet can accomplish organized goals. Everybody is exhausting themselves by writing and reading pages and pages of discussion that leads to no coordinated action. (Like this post.) Right now we have patients on two sides of the IOM issue cancelling each other's efforts. Other discussions just go round and round. Meanwhile, HHS has just enough patients cooperating with them to claim that they have patient support, and they have proceeded with their work unphased.

    If your effort does not target individuals and make the targeted person uncomfortable enough to change their behavior, then you have wasted your time. Making friends with the enemy is the best way to get shot, not to win a war. We have to find a way to train patients in effective, targeted, non-exhausting political advocacy that creates immediate consequences for individuals in HHS and CDC, and I don't see these forums as able to do that. So I think the failure is the medium, more than the patients. I applaud patients who don't want to waste their time.
  11. Chris

    Chris Senior Member

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    @Nielk--thanks for posting that piece by David Egan--which looks somewhere near the true picture to me. I note he fingers Anthony Fauci--as did Hillary Johnson in her talk recorded on the 1011 InvestinME DVDs. I go to the web and do not find anything suggestive of this, so ask--is there any accessible evidence for this statement? It may very well be true--Hillary Johnson was a good reporter, and not given to wild accusations. He is listed as a member of the IOM, but other than that I would like to hear if we have any specific evidence. Clearly this act did not originate with Sebelius--so it had to be suggested by others within the NIH. Is there anything one can quote in a letter for instance?
    Chris
  12. Nielk

    Nielk

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    Because:

    - 35 top experts in the field have urged HHS to cancel this contract with the IOM. They recognize the danger of having non-experts define such a complex serious illness.

    - IOM has no previous experience with the charge of defining a disease.

    - Current history shows that they have studied and found GWI (renamed chronic multisymptom illness) to be a psychosomatic illness due to PTSD and recommended therapy and antidepressants for treatment.

    - The Million dollars spent on this could have gone to much needed research.

    - If the end result is as we fear, a definition leaning towards a psychosomatic slant, this will effect patients all over the world. It will effect health insurance coverage and disability coverage. It will effect the WHO coding of this disease. It will stunt all real biomedical research.




    By 'them', do you mean HHS? We have communicated with HHS time and time again. Remember at the last CFSAC meeting how Eileen Holderman and Mary Ann Fletcher made allegations that they were intimidated by the DFO and are afraid to speak up? The Alliance group of organizations and patient advocates wrote a letter to HHS asking them to investigate these allegations and report back to us since we need transparency as to the actions of CFSAC and HHS. We do not want a committee where members are too intimidated to speak up. This letter was never replied to nor acknowledged. The subsequent three letters by patient advocates asking for a progress report as to the result of the investigation were never replied to.

    The letter by the 35 distinguished expert clinicians and researchers to HHS was never acknowledged nor replied to.

    The past ten years of pleading by patients, advocates and CFSAC members with HHS (meaning NIH and CDC) to change the CDC website, to remove the CFS toolkit, to adopt the CCC has been ignored.


    When they first came out with the announcement for a sole solicitation for a contract with the IOM, we had a large campaign of letters that patients sent to HHS asking them to cancel the contract. A week later, they announced that because of this patient outcry, they are cancelling this action. Two weeks later, they announce that the contract has been signed and the fact is done, regardless of our outcry.

    I am open to any suggestions as to how we can manage to be heard and have an impact on HHS, other than what has been done so far.
    beaker and Delia like this.
  13. Ember

    Ember Senior Member

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    Some suggestions, compliments of Wildaisy:

    Wildaisy adds..."A Pep Talk from Kid President to You:"


    beaker and Delia like this.
  14. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    The stop the IOM contract petition isn't working for myself and others i've forwarded it to. After writing comments etc. its not being accepted saying that an email address is required.. Ignoring the email given. Been on for an hour trying to sign one signature and nervous forwarding it on further until i can do it myself.
    The other petition thanking the experts went blank after signing and now i can't get access to the page. Praying its just my brain fog but others were having difficulty too i think.
    Still catching up on this whole thread, been a vegetable for a couple of months so catching up now.
  15. Delia

    Delia Senior Member

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    Try this one at twenty years and counting.

    It's working, I just did it. :)

    http://twenty-years-and-counting.blogspot.com/?spref=fb
    beaker likes this.
  16. acer2000

    acer2000 Senior Member

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    Weird, it just worked for me. Maybe contact the web site and let them know its not working?
    beaker likes this.
  17. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Thanks so much for sending the extra link. The same problem is happening on those too. It won't let me sign the damn thing. I'll try again tomorrow. Thanks again
    beaker likes this.
  18. Nielk

    Nielk

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    I hope it works for you tomorrow and thank you for trying.:)
    beaker likes this.
  19. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    The thank the expert one has finally accepted, i'll fight with the other one when i wake up
    Nielk likes this.
  20. Ecoclimber

    Ecoclimber Senior Member

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    We need more recruits to contact ME/CFS bloggers to post our messages. Contact me if interested. Many of us are getting burned out and need help or post a message on here that you are willing to help. We have the message we just need people to contact bloggers to post it.

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