The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Sign petition to HHS stating CAA/SMCI does not represent "our voice".

Discussion in 'Petitions' started by Nielk, Mar 17, 2015.

  1. Nielk

    Nielk

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    This is advocate Eileen Holderman's comment when signing this petition:
     
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  2. Nielk

    Nielk

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    Advocate Liz Wilow's comment to the petition:

     
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  3. Sasha

    Sasha Fine, thank you

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    Is there evidence for 'a vast number'?

    Going by petitions, I'd say there's evidence for a few hundred patients who don't like the name and the definition but I don't know about a 'vast number', let alone a vast number of experts and stakeholders.

    And of course, there are a lot of patients - probably the majority - who support the definition and the name.

    I think it's important not to overclaim support on this issue.
     
    Last edited: Mar 23, 2015
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  4. Nielk

    Nielk

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    Yet, you claim that the majority support the definition and the name. Where is your evidence for that?
     
  5. Sasha

    Sasha Fine, thank you

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    No, what I said was:

    I said 'probably' because I don't have numbers either, whereas Eileen is stating 'a vast number' as fact.

    But I think it's probable that the anti-IOM-report position is a minority position among patients in general because, as you yourself have often complained over the last few weeks, you're a fairly isolated voice here on PR in wanting the IOM report to be rejected.

    If there's a source of bias in PR's membership, I'm not sure what it would be. PR is open to anybody: no-one needs to hold a particular opinion to be here and there's a wide range of opinions on most topics but not, apparently, on this one. And yet my impression from discussion on the boards when the process by which the IOM was appointed was being contested was that that 'stop the IOM getting the contract' campaign was hugely popular here. There was fertile ground for there being lots of members rejecting a bad report but that hasn't happened.

    That's why I think that it's a majority position.
     
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  6. Nielk

    Nielk

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    The petition against SEID has already close to 600 signatures and it is growing - https://www.change.org/p/institute-...&utm_term=des-lg-no_src-no_msg&fb_ref=Default

    Lisa Petrison's result of her independent and extensive poll regarding the name shows that an abundant majority of people oppose the new name SEID and a majority call for the name ME - http://forums.phoenixrising.me/inde...ting-a-proposed-name-to-replace-me-cfs.36311/

    In addition, Eileen Holderman has the best pulse of what the US patient and expert community things. she has a vast array of contacts with the patients, advocates and experts. If she says it is a vast amount, I believe her.
     
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  7. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    yeah, most people don't like the name, I think that's safe to say.

    But I don't think there is data that most people (who have looked at it themselves) don't like the report. My impression from the things I have read various places is that more people who looked at it liked the IOM report than not.

    Not sure about the definition.

    But those are 3 different topics.
     
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  8. Nielk

    Nielk

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    I agree that i don't know about the report. Clearly, much of the report based on research is good. It is the resulting criteria and name that is problematic.
     
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  9. Wildcat

    Wildcat

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    .
    .



    I have not seen a "majority" support for IOM/SEID outside of Phoenix Rising. Far from it.

    Of the very many advocates I know, many over years - none post here. Most are not PR members.

    PR may be a big site - but a limited number of the same people post on the politics and research theads.




    .
     
    Last edited by a moderator: Mar 24, 2015
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  10. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I think the thing about PR is that people here have a variety of viewpoints and disagree. This is not always comfortable, and sometimes it gets out of hand but there are moderators who generously try to keep things civil.

    There is another forum and various facebook groups where people tend to have the same viewpoint and so they don't tend to have disagreements. This is more comfortable, but has risks of not considering other viewpoints.
     
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  11. Sasha

    Sasha Fine, thank you

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    But that's a petition specifically about the name: Eileen's 'vast amount' claim is in relation to both the name and the definition, and it doesn't follow that because someone objects to one, they object to both. And 600 is, as I said, hundreds: with a US patient-population of at least 1,000,000, I don't call 600 'a vast amount' and I'd be a bit surprised if Eileen would.

    Again, that's only about the name, and again, we're only talking about some hundreds (quite possibly the same hundreds). Moreover, problems with that survey have already been discussed on the forum: in terms of its percentage outcomes, it's highly unlikely to reflect the opinion of patients in general.

    I have a great deal of respect for Eileen but I think it's important to be clear when making claims like this. The issue for me here is, what does Eileen consider to be a vast amount, and is it what most people would understand by that? In the context of a patient-population of 1m, I'd consider a 'vast amount' of patients to be in the thousands, not hundreds, and a 'vast amount' of experts in the ballpark of 50.
     
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  12. Ember

    Ember Senior Member

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    “CAA/SMCI continues to push the HHS/IOM definition and name, despite a vast number of patients, experts, and stakeholders who oppose the definition and name.” - Eileen Holderman

    I wouldn't quibble with Eileen's comment. Vast means “very great in size, amount or extent.” Certainly Eileen hasn't been alone in her perception. Tina expressed concern, for example, that the opposition might, for a few weeks, have been the only voice speaking publicly: “There for a few weeks, I was concerned that what seemed to be the only voice speaking publicly, expert and patient criticism, might lead us to nothing since I don't imagine the US government will spend money on this issue any time soon, if this effort didn't produce change.”

    Phoenix Rising makes no claim to being an unbiased population.
     
  13. Sasha

    Sasha Fine, thank you

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    But it means nothing out of context. A grain of salt is vast compared to an atom.

    The context here is the population of PWME (either US or internationally) so we're talking a context of 1 million patients and upwards.
     
  14. Ecoclimber

    Ecoclimber Senior Member

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    I really don't see what the fracas is all about. People that don't like the petition won't sign and those that do will...wait what petition is this...there seems so many floating around or changes to them at least, it's hard to keep track.

    Personally, it might be beneficial to sign if you object, I'm kind of waiting to determine whether the HHS/NIH/CDC does anything with research funding and whether the CDC physicians toolkit is updated. HHS/NIH/CDC is not going to backtrack now especially with report published in all those medical journals and in print media. They and the IOM would lose face which they will never allow to happen.

    I believe the name will change when more medical research is conducted. They said within 1-5 years. Maybe that's when we should address the issue. Don't want to win the battle but lose the war.
     
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  15. Nielk

    Nielk

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    @Sasha, you very well know that out of the 1 million only a fraction are actually diagnosed. From those that are diagnosed, a quarter are too ill to take part in petitions and polls. Out of those, how many are on social media?

    You have tried in the past to garner signatures or to try to raise funding. How many replies did you get. For that matte in the history of the disease, what was the greatest figure that we have been able to gather in order to sign any petitions?
     
  16. Nielk

    Nielk

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    The petition here is to state that SMCI does not represent us.
     
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  17. Ecoclimber

    Ecoclimber Senior Member

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    Oh, I was just reading the comments above my postings that said reversing the name change of SEID. Maybe I need to look on page 1
     
  18. Sasha

    Sasha Fine, thank you

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    I agree that only a fraction are diagnosed, and in fact only a fraction of those will be networked within the community and I was taking that into account with my comment when I said I'd consider 'thousands' to be vast in relation to 1 million - that is, a few tenths of a per cent. What I'd consider to be 'vast' if we were talking about a diagnosed, networked million would be hundreds of thousands.
     
  19. dancingstarheart

    dancingstarheart

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    Just because there is a very outspoken group of IOM supporters does not mean that group represents the majority of Phoenix Rising. That group of individuals do not speak for me. I do not support the IOM.

    Is there a Phoenix Rising survey asking if members are pro-IOM, anti-IOM or undecided; a survery that also tracts the number of members that respond versus total number of active members to the site? I am not aware of one.
     
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  20. Sasha

    Sasha Fine, thank you

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    I'd say both pro and anti and middling people are speaking up but that the pro and middling are doing it in larger numbers than the anti's. When the IOM report came out, a lot of people posted very positively about it and for several days after; but not all joined in the debates (especially when things got a bit rowdy).

    There isn't - I think it would be interesting to do, but even active members don't see everything (as was clear when Prof Edwards tried to survey them for something specific - he identified about 100 at the time).
     

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