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Poll: IOM study - for or against?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 15, 2014.

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What is your position on the IoM contract?

  1. I oppose the contract. I support the experts letter urging HHS to adopt the CCC now.

    64 vote(s)
    91.4%
  2. I don't like the contract but, since it is forging ahead, I support it

    4 vote(s)
    5.7%
  3. I support the contract and feel the IoM study is a good thing

    0 vote(s)
    0.0%
  4. I am not sure how I feel

    2 vote(s)
    2.9%
  1. Nielk

    Nielk

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    I would like to get some view/opinions regarding some questions about the IOM study. The results will be used as part of my comment to the first meeting of the IOM study
    Dreambirdie, Roy S and slayadragon like this.
  2. Esther12

    Esther12 Senior Member

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    Remove the 'fully' imo - I think it's likely to be a bad thing and I wish that it wasn't going ahead.

    I never do anything fully though! Too much uncertainty.
    Nielk likes this.
  3. leela

    leela Slow But Hopeful

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    I also suggest, since we are a brain-fogged people, that you might rephrase.

    Oppose the contract then agree/disagree was something I had to think through several times in my stupor.

    What is your position on the IoM Contract could then have the choices I oppose it, I support it, I'm not sure.

    Otherwise it's sort of like a double negative, only not o_O
    Nielk likes this.
  4. Nielk

    Nielk

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    Thanks @Esther12 and @leela - I have edited the question and possible replies.
    leela and Esther12 like this.
  5. Esther12

    Esther12 Senior Member

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    I'm so contrary - but I can't help it!

    I still don't think I have an option, as I'm pretty dubious about rapidly promoting the CCC. I'm far from convinced that this is a great criteria. Probably not worth worrying about, as if you were to come up with an option for me, I'm sure I'd be the only one to vote for it!
  6. taniaaust1

    taniaaust1 Senior Member

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    I know 7 votes arent many but seeing its 100% of the votes at this point agree, it appears it could be strongly said that this site supports "I oppose the contract. I support the experts letter urging HHS to adopt the CCC now".

    That's good I think to see that most here think in the same way and I think its great this poll was set up. No-one can now say that those who run the site are taking a stance which the general PR community doesnt support.
    Nielk likes this.
  7. golden

    golden Senior Member

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    i oppose the contract but cant see an option for that.

    i dont yet know how i feel about the CCC etc.

    I have just been reading CCC criteria is for CFS and ICC for M.E.

    good poll idea.
  8. Nielk

    Nielk

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    CCC criteria uses the interim name ME/CFS. It is the criteria that fifty of our experts have unanimously adopted.
  9. alex3619

    alex3619 Senior Member

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    The support for the CCC is only temporary. Our experts want to use it as a start to build on I think. Its a minimal position, the minimal acceptable criteria that is well understood and has been extensively used.

    I support our experts. If we don't support them, who have we got worth supporting?

    We do have some experts on the IOM panel, and that might prove interesting as things move ahead. I would much rather our experts could move ahead on their own without the IOM, as the methodology the IOM uses is not suitable for our situation, and indeed is not optimized for disease definition criteria, its optimized for treatment options and specific diagnostic tests. Its also a very fallible process, especially when the research is highly skewed as it is in our disease. I expect many heated internal arguments in the IOM panel. I hope our experts can persuade some of the other panel members. I would much rather they didn't have to, and the CFSAC recommendation for a meeting of experts and patients to discuss how to proceed were to occur instead.

    My understanding is the CCC is an ME criteria, but uses ME/CFS as a nod to political realities: ME is called CFS in the US. By the ICC they decided to drop CFS altogether.
  10. alex3619

    alex3619 Senior Member

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    I note an overwhelming response to the first option so far, but I am also aware we could be seeing a response non-response bias ... those who are opposed to the IOM contract and support our experts are responding.

    PS Corrected to read non-response bias, not response bias.
    Last edited: Jan 16, 2014
    justinreilly and Firestormm like this.
  11. Firestormm

    Firestormm Senior Member

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    I agree with Alex above. I think the first option is unfairly biased. Time has moved on and we are not now where we were before the contract was confirmed. The chances of it being cancelled are minimal I would suggest - but I could of course be proved wrong. Experts are on the panel. I am editing an article at the moment so can't write more. I voted for the second option, rather than abstain, though I also happen to think that something like this needed doing. It could have been handled better, a similar exercise may not even have resulted in the CCC in its' entirety being adopted, but a national definition that improves upon Fukuda, and it accepted and used by all physicians is, in my non-US citizen view, needed in the US, as is a new and better name.
    Snowdrop, jspotila and barbc56 like this.
  12. golden

    golden Senior Member

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    i am certain i oppose the contract. I would like a plain and simple option for this if at all possible.



    i no longer support the CCC (even though i originally passed a copy through to my G.P.

    However if its 'politics' i might be open to it. But probably not.

    if anyone can give me a cliff notes version of each groups politics and agenda that would be helpful.

    i have learned a lot since joining the forum - i knew of no m.e. politics beforehand.

    but most of all i should like an unbiased summary of where Dr.Hyde and his team of experts fit in who obtained clinical evidence in hospitals about M.E.

    are these experts wanting the CCC not in alignment with the Dr.Hyde experts?

    i sincerely apologise for my clumsy questions, i don't even know if i am treading on anyones toes.


    Since its about politics it made me ask:

    what would Gandhi do?

    probably not attend and refuse to acknowledge the authority of the contract?

    i also did wonder if this really should be anything to do with non-us citizens ?

    best
    golden
  13. Nielk

    Nielk

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    Hi golden,

    If you would like more information about this IoM contract and process, you can read this thread about the chronological events - http://forums.phoenixrising.me/index.php?threads/the-chronological-events-
    of-the-hhs-contract-with-the-iom.25933/
    You can read many different blogs written about it here - http://forums.phoenixrising.me/inde...nd-articles-about-the-hhs-iom-contract.26062/

    The reason why my option only mentions the CCC is because that is what our experts have decided as a group to endorse. It might (and it probably is true) that other criteria are better, like the ICC or Dr. Hyde's, but the CCC has the biggest chance of being accepted and adopted by HHS. It has been in action for years and many studies are being used with the cohort fulfilling that criteria. Once the CCC gets adopted, our experts can work on refining it.

    I didn't feel that cancellation of the IoM without adopting the CCC by HHS is a viable option because where would that leave us? Back with the Fukuda? It is clear that patients don't want that.

    As far as non-citizens are concerned, I think that the politics in the U.S. is really universal because most studies of diseases are being done in the U.S. Whatever is decided here, will eventually effect everyone around the globe. They all should have a say as to the process.
    AzizaJ likes this.
  14. Nielk

    Nielk

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    Hi Firestormm,

    I am not sure what you mean by the first option being biased? It is just an opinion. One can choose it...or not.
    I wanted everyone to have the ability to have a voice here and they can do it anonymously with no worry of backlash.
  15. Nielk

    Nielk

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    I don't understand the 'bias' you are referring to, Alex. Everyone has an option to vote as they wish, anonymously. In what way is that a bias? It might be that the ones who are opposed are more committed to this topic and therefore take the time to vote. I guess this could be a flaw of any poll taken. I urge everyone who reads this, regardless of how you vote to please take the time and voice your opinion.
  16. Firestormm

    Firestormm Senior Member

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    Because you use the word 'now' I guess and because the experts letter was sent at the beginning of the process/affair. It may be that if you went back to all those experts again, where we are today, and asked their opinion would be different.

    I may be that if you got all those experts in a room, round a table, the definition for the USA they came up with would not be CCC. And, as Alex intimated, but also because I personally think people when asked will ever oppose something the 'government' is said to have done, and that 'their' experts are said to have opposed, without really knowing much about the issues involved.

    There has been and will continue to be a lot of interpretation in this affair. Some helpful, some not. I have lost the plot and don't mind admitting it. But I would rather see the 'patient community' be proactive than oppose for opposition's sake. When NICE was on the table - opposition was rife - but (and controversially) I still like to think that the result was better for positive patient input in the process than it would have been without.

    Can I also make the point - and I know you wouldn't do this - but when citing a survey in a letter or should it appear in the Phoenix Presentation: you are careful to note the number of people who took part i.e. ensure that it is not stated that this is a representative survey of Phoenix members or of the community? Thanks.

    Surveys are needed I think, and I wish we had perhaps done some before when this was all building up to the public meeting. Indeed it might have helped to inform the Phoenix presentation. Though I have to say that I would have struggled to come up with fair questions!

    But it is your survey Nielk and I hope it helps you in your letter :)
    barbc56 likes this.
  17. Nielk

    Nielk

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    I am not sure why we would think that the experts' signed open letter where they all agree on opposing the contract and they all adopted the CCC now, has a deadline. Why would their opinions have changed? Unless they publish a formal letter to rescind their previous opinion, I assume that it is still standing.

    It seems that they have gotten together, maybe not in a room but on cyberspace and have decided that for now the CCC is the definition that they agree on.

    I don't think that you give the masses credit for their thinking. Most of us are not opposed to government regardless of their actions. When they are acting with our best interest in mind, we support them. Most of us were very happy with the FDA's latest stakeholder's meeting and we were not shy in voicing that. Should we just support the government blankly regardless of the possible harm to us?

    Opposition, is a proactive action. As a general rule, I am not a person who likes to demonstrate. I am not in opposition for the sake of being oppositional. I have looked into all this very carefully and keep on top of all the actions that are happening. I strongly oppose this study, it's chosen venue, the IoM is wrong. It's SoW is flawed and set up for failure. I question all the lies and lack of transparency. I will not join work with it, for the sake of being proactive.

    I am not familiar with what happened with NICE.

    I plan on including the resulting information in my personal written comment to the IoM.

    I am still struggling with the fact that you seem to say that this poll was not constructed in a fair way.

    Thank you, Firestormm and I hope that a lot of people will take the opportunity to voice their opinions.
  18. AzizaJ

    AzizaJ

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    i also did wonder if this really should be anything to do with non-us citizens ?

    best
    golden[/quote]

    It has definitely something to do with non-US citizens. From the IOM website: "The recommendations will have a domestic focus, however, major international issues may be identified." http://iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx

    This means they admit that everyone in the world is a stakeholder, and there are many foreign people protesting this contract.
  19. AzizaJ

    AzizaJ

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    It still can be cancelled. Plus there is a lawsuit filed for not answering a FOIA request into the contract. http://thoughtsaboutme.com/2014/01/...ed-against-hhs-and-nih-relating-to-iom-study/
  20. Firestormm

    Firestormm Senior Member

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    Nielk as you might remember, I am aware of the haste with which the letter was originally sent around asking for endorsement, and of that situation at the time. I am not saying for definite that those who signed did so for anything less than legitimate reasons to which they would not still adhere - I am saying however, that we are where we are now.

    You make some very good points and I agree with many of them. I think though that it remains important to provide context to any survey, and a previous comment, intimated that it was representative when I do not believe it can be thought of as such.

    I do not really care if the response to IOM is an overwhelming 'we wish you hadn't bothered' from those few who do speak or register their feelings; I simply feel we should collectively make the best of a bad job and get on with it (not saying either that you aren't).

    To be honest I am frankly amazed at the general lack of response to what some 'advocates' claim is such a big deal. Perhaps it could have been better and far more representative generally, if there had been more time; but as a 'community' we frankly suck in terms of getting together.

    I don't know what the answer is but I do think things need to be better handled in future and that compromises need to be made if ever we are to move forward. And perhaps a better definition is something that will bring us all closer together.
    barbc56 likes this.

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