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Petition: Stop CDC from hiring shoddy contractor for ME treatment guidelines

Discussion in 'Petitions' started by Joh, Aug 27, 2018.

  1. Colleen Steckel

    Colleen Steckel Established Member (Voting Rights)

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    Asking for proper treatments that have evidence based studies always leads to what disease are we talking about? If it is CFS that is diagnosed with Fukuda with patients who DON'T have PEM (or PENE), then we are still looking at CBT and GET as viable treatments.

    If we are looking at ME patients who have immune dysfunction then a report that doesn't take into account any of the immune system issues because the IOM criteria was used leaves all of that vital information out of the report.

    A clear designation of patient populations is required in order to get a document that actually guides doctors to do more than behavior modification for those who have ME with the immune system dysfunction widely recognized as a key component as per the ICC.
     
    Alison Orr likes this.
  2. alex3619

    alex3619 Senior Member (Voting Rights)

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    We are looking at the claim, not at objective evidence, even for CFS rather than ME. For ME GET is clearly contraindicated by hard physiological evidence. For CFS its more a complete absence of objective evidence for CBT or GET. Subjective, unblinded findings that are within an expected bias range are not good evidence.
     
    Andy, JaimeS, Samuel and 3 others like this.
  3. alex3619

    alex3619 Senior Member (Voting Rights)

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    This is the core of all EBM approaches in an area that is a research wasteland, its not specific to the IOM but the entire methodology. It could not have been any other way using an evidence based approach.
     
    Andy, JaimeS, Luther Blissett and 2 others like this.
  4. strategist

    strategist Senior Member (Voting Rights)

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    CBT and GET don't appear to have a meaningful effect for the vast majority of patients even when broad criteria are used.
     
    Andy, JaimeS, NelliePledge and 10 others like this.
  5. Hutan

    Hutan Moderator Staff Member

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    The petition letter has been changed since I made my comment about item #6. Yes, it's not ideal that it changes after some people have signed it. But I think the changes are a big improvement and I have signed the petition.
     
    Andy, JaimeS, RuthT and 7 others like this.
  6. Hutan

    Hutan Moderator Staff Member

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    The discussion about the staphylococcus toxoid vaccine treatment has been moved to this thread.
     
  7. Colleen Steckel

    Colleen Steckel Established Member (Voting Rights)

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    I was unaware that they changed something after it was signed. That makes me very uncomfortable. Does anyone have a "before and after" version to show what was changed??

    I don't see an item #6.
     
    Alison Orr likes this.
  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    I think that they removed it. It might not be ideal, but removing a sub-clause of the petition some had raised concerns about is much, much better than adding something to it imo.
     
    Andy, JaimeS, Dolphin and 8 others like this.
  9. Joh

    Joh Senior Member (Voting Rights)

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  10. Alison Orr

    Alison Orr Established Member

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    I’m really quite astonished that there isn’t more concerned discussion about a high profile (or any) organisation changing a petition after thousands have signed it. If it was on a subject we didn’t agree with, I’m sure we’d all be up in arms. It’s highly unethical to gain thousands of signatures and then change what has been signed. In effect it makes the signatures invalid. And not to answer questions (on Twitter) about it either. It makes me, for one, not trust any of MEAction’s petitions in the future - how would I know they wouldn’t be changed too?
     
    andypants likes this.
  11. Trish

    Trish Moderator Staff Member

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    I guess the most ethical thing to do if you realise you've made a major error on a petition that people have already signed is to close it with an explanation and apology, and start again with a new one.

    Alternatively leave it as it is, point out the concern about it, and leave people to decide whether to sign it anyway with the error present.

    I agree is doesn't seem ethical to materially change a petition after people have signed. That would particularly apply if you added something new to the petition. You are effectively 'stealing' their signatures for a new petition they have not agreed to.

    I haven't followed this thread, but I understand the change in this case was the removal of one item from a list of demands. In that case I guess you could say everyone who signed it had seen and signed up for the remaining demands, so it's not so bad.
     
    andypants, Andy and adambeyoncelowe like this.
  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    It's a pretty unusual situation with only a few days available to run a petition. That makes starting over much more costly. Seems like they were in a difficult situation.

    It's not ideal, and I agree that in principle it's worrying, but in terms of the specifics of this one change I don't feel concerned about it.
     
    andypants, Andy, Hutan and 5 others like this.
  13. Joh

    Joh Senior Member (Voting Rights)

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    E-Mail from #MEAction:
     
    andypants, Andy, Hutan and 9 others like this.
  14. Alison Orr

    Alison Orr Established Member

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    When did you get this? I’ve not received one.
     
  15. Wonko

    Wonko Senior Member (Voting Rights)

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    15:53 today (UK) according to hotmail. I was about the 250th signer, maybe they only sent them out to people who signed before it was changed?
     
    andypants, Andy, Alison Orr and 4 others like this.
  16. Alison Orr

    Alison Orr Established Member

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    Yes, I imagine it’ll take the system a while. Thanks.
     
    Wonko likes this.
  17. JaimeS

    JaimeS Senior Member (Voting Rights)

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    People who signed the correct version will not get a notice.

    Just to be certain, we sent it to everyone who signed anytime on Monday -- just in case they kept their browser window open awhile before signing.
     
    Last edited: Sep 2, 2018
    andypants, Keela Too, Trish and 3 others like this.
  18. JaimeS

    JaimeS Senior Member (Voting Rights)

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    You signed on Tuesday, Allison, so you signed the same version that's there now.
     
  19. Joh

    Joh Senior Member (Voting Rights)

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    Petition can still be signed: Right now 7,989 of 8,000 signatures
     
    andypants, JaimeS, Esther12 and 3 others like this.
  20. JaimeS

    JaimeS Senior Member (Voting Rights)

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    We broke over 8,000!

    Please continue sharing, and if you can, make it a project to get a friend to sign. :)
     
    Sean, NelliePledge, andypants and 4 others like this.

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