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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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CFIDS Association asking expert signatories about their current position on endorsing the CCC

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Sep 28, 2013.

  1. Bob

    Bob

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    As others have said, the CAA seems to have completely misunderstood the purpose of the IOM contract. Its task is to create a new clinical definition, so it has nothing to do with research.
    justinreilly and beaker like this.
  2. alex3619

    alex3619 Senior Member

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    There are only two examples of similar processes we know of. Much has been made of the IOM contract and the newly named CMI. Do not forget the NICE guidelines on treating ME/CFS. They are also not fit for purpose. Thats zero for two for this approach. Are we willing to go for zero for three?
  3. alex3619

    alex3619 Senior Member

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    I doubt very much they misunderstood, its blindingly obvious. Its simply being used to spin their message.
    justinreilly, asleep, Bob and 2 others like this.
  4. Ecoclimber

    Ecoclimber Senior Member

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    Vernon applauds her efforts and the IOM by denying medical and disability benefits to Gulf War Veterans by reclassifying their illness from GWI to CMI? So now her brother gets tranquilizers, St.Johns wort and talk therapy to overcome his illness? He is thrilled by this and wants the same for the ME/CFS patient community? What! Give me a break!
  5. Nielk

    Nielk

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    In what alternate world does all this make sense?o_O
    justinreilly, RL_sparky and beaker like this.
  6. leela

    leela Slow But Hopeful

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    I guess people involved in business and politics actually believe that people don't notice when they are being gaslighted? Or don't care that said gaslighting is totally transparent?
  7. Kati

    Kati Patient in training

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  8. alex3619

    alex3619 Senior Member

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    I posted this in reply:

    SOC, Valentijn, Kati and 1 other person like this.
  9. Ember

    Ember Senior Member

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    Their rationale may be one of currying government favour, i.e., cooperating on a clinical case-definition consensus in order to merit government funding for their research projects. Reading between the lines...
    beaker likes this.
  10. aimossy

    aimossy Senior Member

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    hi guys, I am not up with all the politics, so please excuse my question if its a bit ignorant.
    it doesn't sound good whats happening I have signed a couple of the petitions.
    if they don't adopt the CCC which seems likely.....could all the rubbish that they are up to be blown out of the water down the track by rituximab and lipkins research? I really hope so.
    rosie26 likes this.
  11. alex3619

    alex3619 Senior Member

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    Yes, in theory. However for H. pylori as a cause of gastric ulcers it took half a century for a cure to be accepted, and well over a century since the causative agent was first implicated. That only happened because one pair of researchers, one of whom was Barry Marshall, put his career on the line and infected and then cured himself. I have blogged about this. For around a decade the medical community refused to act on it though. Yet patients were aware, and with relentless advocacy finally forced a change.

    So I hope that Rituximab, or the research from Lipkin, Snell or the Lights, or indeed a fair number of our medical researchers, can create a change. Do be aware though that we may have to join with them and fight to get the research accepted.
  12. alex3619

    alex3619 Senior Member

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    It is very likely they are playing either a business or political game, or both. This is following more of a business model than an advocacy model. I think they are right in what they said about being out of advocacy. The mistake is in thinking that means they are out of the game ... they are a business now, even if non-profit.

    I am fairly sure they have very good logical reasons for what they are doing. However I am also fairly sure, from what is not said, that they don't want to air those as most in advocacy would suddenly be against them ... but silence and spin are not helping either.
  13. aimossy

    aimossy Senior Member

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    thanks for some more education alex!
    what people have said about what they did to gulf war illness is very concerning. pretty hard to ignore past behaviour!
    I guess I will have to keep signing anything im asked to sign on here and fb. and find a way to inform others here as much as I can. cant help myself its in my blood to get involved.
    buggers(sorry kiwi slang) will put up road blocks everywhere but eventually we win the war ay alex?

    I feel we are are loading proof in the cannon though, im gonna be so pissed off if this research comes up super trumps and its ignored.
    rosie26 likes this.
  14. alex3619

    alex3619 Senior Member

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    We have no choice but to win, no matter how long the road. We aren't getting better because they legislate it or redefine recovery, or create special committees. King Canute made the point by showing that even a King cannot alter reality. So we will win, but nobody yet knows when that will be. I just hope that those who stood in the way will eventually feel the shame of harming millions of people. Lesson need to be learned, but it appears Humanity has to relearn those lessons every time. We just forget them, or sometimes they get conveniently misplaced.

    PS (Edit) Maybe we should call the forces trying to derail or ignore the science of ME the Canutes? Yet whereas I think the wise King Canute defied the rising tide to prove a point, the modern Canutes are denying reality to suit their own needs.
  15. aimossy

    aimossy Senior Member

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    I agree and well said alex!
    we are a bad smell that is not going to go away for them.
    if they do ignore amazing results do you think people will be angry enough to cause a critical mass? do you think the time is ripe within the community....cos im new to PR and my own organisation (but not new to the disease)I have no way of judging the temperature on this.
  16. aimossy

    aimossy Senior Member

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    lol!!!!! all I do know is im gonna be friggin livid!
  17. alex3619

    alex3619 Senior Member

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    Many of us are hoping these current issues with the HHS, IOM, and CDC will be enough to create a critical mass. I wouldn't count on it though it wont be for lack of trying. Yet at some point something is going to trigger the possibly thirty million of us (I don't trust the 17 million figure) to take action and demand change.
    aimossy likes this.
  18. aimossy

    aimossy Senior Member

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    yeah 17million might be a bit extreme eh.
    If I had the skills I would make something that's so interesting or shocking that gets shared on fb and you tube that's powerful enough to go round because people think oh man and share on fb and you tube.
    you know how planking and stupid stuff does or shocking stuff goes viral!
    could be used in an education kind of way.
    more of us need educated first then organised then outraged!
    something that went viral would have to be sooooo well thought out! I like the concept but it definitely needs more thinking.
    Thanks alex!
  19. Nielk

    Nielk

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    I think that many of you might think that how is this contract with IOM going to affect me? If it follows the course of GWI, it will find that ME/CFS fits under the same umbrella as GWI and should be renamed Chronic Multisymptom Illness too or something like it. They will explain that most likely it is the same or similar to PTSD and will advise for clinicians to treat it the same way. They will recommend CBT/GET and/or antidepressants.

    Part of the contract calls for disseminating this information to clinicians all over the country. Every doctor in this country will have an official stamp of approval to treat us as psychiatric patients.

    In addition, research funding going forwards will only be given to studies with that in mind.

    This is already happening; it will only reinforce it and make it much worse.

    Why it is that Ian Lipkin’s grant proposal for further studies has been denied? He basically told us at the CDC call that he does not have the funds to continue his research. He (with CDC’s Unger on the line) called for patient demonstration like the act-up of aids patients in the 80’s.


    Are we willing to just sit by and let this go on?
    justinreilly and asleep like this.
  20. lnester7

    lnester7 Seven

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    Is there a clear place where it has all the links to go and vote or what is the plan for to counter act this as All ME community ??? I am still wondering and have not gotten answer if the GWS group has been contacted to support our cause, I will support them back in return when they will need it. Time to join forces folks!!!

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