1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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Occupy CFS: Jennie Spotila - At the Microphone - public meeting 27 January

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Firestormm, Jan 20, 2014.

  1. Bob

    Bob

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    I've noticed that there is no substance to any of the negative comments attached to Jennie.
    There just seems to be a generalised condemnation based purely on a past association with the CAA.

    Our opinions and our advocacy work evolve over time.
    Instead of speculating about individuals, and smearing someone's character (for past associations; or for 'liking' someone's post; or for the 'tone' of a post) why don't we assess the merits of the work that people carry out, and focus on the IOM committee itself?

    I'll judge all IOM presentations on their content.
    Last edited: Jan 23, 2014
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  2. SOC

    SOC Moderator and Senior Member

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    Thank you, Bob. That needed saying.
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  3. barbc56

    barbc56 Senior Member

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    jspotila likes this.
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Even if they don't listen, your opinion will be on the record. :thumbsup:
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  5. alex3619

    alex3619 Senior Member

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    Getting an opinion on record can be almost important as them actually listening. I think it probable that some will listen and respond, some will listen and ignore, and some wont really listen as they will interpret what is said their way. Yet the record will remain.
    taniaaust1 likes this.
  6. caledonia

    caledonia

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    Last edited: Jan 25, 2014
    Wildcat likes this.
  7. barbc56

    barbc56 Senior Member

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    On this thread?
  8. caledonia

    caledonia

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  9. barbc56

    barbc56 Senior Member

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    My point is not about majority. It was that the weight of these "polls" MAY not necessarily represent the full picture and there MAY be more people than thought who MAY not go with the "majority" opinion. Kind of like the squeaky wheel.

    Oh, and what @Firestormm said. :)
  10. taniaaust1

    taniaaust1 Senior Member

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    Yeah I worry about that too. Thou they have choosen to have PR speak as well but that doesnt mean that the balance may not have been purposely made so that a certain opinion be more heard and put out then another. It is possible for them to create some biased all the way throu.. picking speakers, picking panel members etc etc.

    I have complete mistrust over any government actions to do with ME/CFS.. they are yet to prove that they can be trusted and till that day comes, they will never have my trust. They have done too much.
    ....................

    There is also an issue among any ME/CFS org as they dont just represent ME people but also CFS people too, as CFS may be far more common then ME (i think one stat was only that one in every 6 people has ME), this too could be creating some biased too due to the numbers represented, so that ME people may be less likely to be heard even at ME/CFS websites and esp by ME/CFS orgs (seeing less then 20% of the members may have ME)

    Ive noted over the years that many CFS people who know they dont have ME fear the separation of these illnesses as it makes them wonder where that would leave them. The opinions of a ME group.. may be completely different to the opinions of a CFS group.

    Its like having a site for two completely different illnesses eg lets say this site was a site for heart problems (with a minority having that) and a site for those who have broken legs (with a majority having this). And a defination is asked for these two things but having them lumped and being discussed as one and the site asks people "what do you want in your definition?".. its crazy really, how can people find out what is best for each group by getting the responses from all but then having to put it down as if its coming from just one group when there are two completely different groups involved in the responses?

    Crazily still if one group is outnumbered at a site by the other group (Ive no idea of the balance at this site, this is just an example). To be fair.. mixed websites ME/CFS need to stay catering for both their CFS people and their ME people and this will be catering for them differently and not lumping opinions together as one (which creates a mixed mess of responses with possibly unequal balance between two different illnesses).

    I wouldnt be happy for Jennie to speak out for the CCA seeing the majority it represents is likely to be CFS and not ME (the CCA have never pushed CCC if they did maybe that would now be in use in America.. instead they cosied up with CDC which certainly wasnt representing their ME people, their minority group but rather throwing this group to the hounds).

    Has any groups at all who are solely ME groups been invited to speak for better balance?? to help over ride that CFS patients do outnumber ME ones?
    Last edited: Jan 25, 2014
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  11. Ecoclimber

    Ecoclimber Senior Member

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    Since there are no established, accepted and verifiable ME/CFS biomarkers which are recognized within the general scientific and medical community, it would not be feasiable at this time to create a separation. There could be subsets within the ME/CFS patient community based on pathogen exposure, toxins and genetic factors, etc.. It could be similar to MS where you have four disease courses, general MS, progressive: primary-progressive MS- PPMS, progressive-relapsing MS-PRMS, and secondary-progressive MS-SPMS.
  12. taniaaust1

    taniaaust1 Senior Member

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    The only reason biomarkers arent established and accepted is cause CFS lumped with ME.

    It is a fact that many who are diagnosed CFS turn out to have other illnesses and hence wont be part of ME.
    Wildcat likes this.
  13. caledonia

    caledonia

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    I agree that online polls are not random samples and therefore may be biased.
  14. Ember

    Ember Senior Member

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    Remove patients who satisfy the ICC from the broader category of CFS:
    Wildcat likes this.
  15. Ecoclimber

    Ecoclimber Senior Member

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    I have to take exception to that premise. Not to misconstrue my comments, let me amend my statement above to make it clearer by saying that generally other illnesses can be eliminated through diagnostic testing. Even some of our leading experts consider subsets within ME/CFS. What I do believe however, is the fact that it is quite unproblematic to separate MDD from ME/CFS. I would support a name change. However, ME/CFS designates a condition where both debilitating exhaustion (systemic inability of the body to produce energy) and ME play a predominate role in this disease and for now is recognised by our leading ME/CFS experts. Anyway, this is creeping a bit off topic.

    Eco
    Last edited: Jan 25, 2014
  16. Ember

    Ember Senior Member

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    Research on ME:
    Research confirmation:
  17. alex3619

    alex3619 Senior Member

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    This is called a non-response bias. Within the limits of the questions asked in a poll, we know what responders have voted for. What we do not know for sure is what those who have not responded really think. Large random samples are used to try to eliminate things like non-response bias.
    Last edited: Jan 25, 2014
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  18. alex3619

    alex3619 Senior Member

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    Currently we do have one group with a different biomarker response in CCC ME/CFS (which is a CFS definition in name only) versus Fukuda defined cohorts. The immune profile is different. We do not know if this is important however.

    While I strongly suspect ME is different from CFS, and that even ME is at least two separate illnesses, all a strictly defined cohort will do is simplify biomarker identification. In the end we may find ME is what most with CFS have, but with additional complications. Or we may find that CFS is dozens of diseases, and ME three or four. We just don't know.

    We actually have biomarkers, but what we lack is biomarkers that are either diagnostic (though several are being looked at) or used for end-point analysis in studies (though I think the 2 day CPET can do that).

    We do need a strict research cohort for easier identification of biomarkers. However even a highly heterogeneous cohort can be used to find biomarkers. This requires very large cohorts though, and sophisticated wide ranging testing and analysis ... which all costs money. If we were overflowing with research money we could do it. On a strict budget, a strict cohort is mandatory. None of this may currently apply to clinical definitions though, except that it is feared, rightly I think, that research cohorts may be drawn from clinical populations directly as it saves money and is easier to do.

    I would urge anyone, whether they think they have ME, or CFS or ME/CFS or CFS/ME to advocate for better treatment from doctors, insurance companies, government agencies, and their elected representatives. People are only excluded from the debate if they stay out of the debate, though I do think that we should try to keep our more angry responses to a place we use to drive our advocacy, rather than use them in advocacy, at least as far we are able.

    This especially applies to the IOM. This is a process that could change the landscape forever. We have been denied proper stakeholder participation ... and so have our experts. They have more participation than we do though, as some are on the panel.
    Last edited: Jan 25, 2014
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  19. Ember

    Ember Senior Member

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    You hoped that the National Alliance for ME might be invited? Or Jeanette Burmeister perhaps from "Thoughts About M.E.?"
    Last edited: Jan 26, 2014
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  20. Nielk

    Nielk

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    Yes.
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