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Institute of Medicine thoughts about CFS in 2001

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Oct 17, 2013.

  1. Ren

    Ren Primum Non Nocere

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    Potemkin Village

    I found Eco's comment above after doing a search for "research advisory committee." And thus I am sharing the following on this thread:

    Other people have posted clips of Anthony Hardie's testimony regarding IOM, and I watched a longer segment (youtube: "Gulf War: What Kind of Care are Veterans Receiving 20 Years Later?") which corresponds to the USA article above.

    I didn't know who Coffman was and looked him up - only to find a Forbes article on his site, which describes how RAC (to my understanding) after "bucking up" against VA/IOM found itself re-organized, with people let go, and those remaining under the thumb of VA now. This may be old news for you in the know, but I just happened upon it and thought I'd share in case it had been missed:*

    http://coffman.house.gov/media-cent...sweeping-changes-to-gulf-war-illness-research


    *Edit - From Eco post 17: "Considering the above evidence, do we you really think we have a seat on the IOM panel board with the ME/CFS IOM contract considering the fact that they disregarded RAC research data, testimonies and advice in a mandate of Congress? Shortly after the decision of the IOM, the VA gutted the board and reduced funding."
    Last edited: Nov 23, 2013
  2. lnester7

    lnester7 Seven

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    @Ren So is there any hope??? Is there an organization (patient) Right now that can give us any hope on this matter?

    I received a phone call from my congressman that they received my email (the one you all posted) now what???
  3. Nielk

    Nielk

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    It does show though a concerted effort from the government to marginalize and whitewash GWI. The contract by the VA with the IOM to re-define GWI/CMI is just more of the same, as is the action of the HHS/IOM contract regarding ME/CFS.

    It is all a very organized effort understate/denigrate GWI and ME/CFS into a non-entity.
    justinreilly and Ren like this.
  4. Ren

    Ren Primum Non Nocere

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    I think Nielk's statement above says it well: "It is all a very organized effort understate/denigrate GWI and ME/CFS into a non-entity." Others have mentioned Malcolm Hooper's Magical Medicine: How to Make a Disease Disappear
    (http://www.meactionuk.org.uk/magical-medicine.pdf). I read part of this some time ago and believe Hooper makes the point exactly which Nielk said.

    I have no faith in IOM/HHS/VA. The word totalitarian comes to mind.

    I noticed on the occupycfs blog that Jennie Spotila has posted info* re commenting-on-record (including written statements) for the forthcoming CFS Advisory Committee meeting. Comment deadline, I believe, is November 29.
    *http://www.occupycfs.com/2013/11/22/on-the-record/#comments

    I think it's important for public record to reflect the problems with IOM - past and present. I doubt it will change anything now, but I think it's important to gather and record evidence for future use. I think it's important to show that the individuals responsible for the very grave abuses against the ME community (individuals with ME and our loved ones) know full well (and have known) that their actions are abusive.

    Chin up.
    alex3619 and Nielk like this.
  5. lnester7

    lnester7 Seven

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    Hey what about that congresswoman that got sick with CFS (Santiago I think??) Can we get support there??
  6. Ren

    Ren Primum Non Nocere

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    This is the first I've heard of Santiago. Perhaps others know more. Found this:
    http://www.senate.gov.ph/lisdata/109549705!.pdf

    Maybe we should ask if she'll be commenting on the upcoming public record?
    alex3619 likes this.
  7. peggy-sue

    peggy-sue

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    I have been having a think about exactly where the root of the problems lies.
    It is the insistance on using only "evidence-based clinical trials" as their information base.

    This is why they can carry on happily ignoring all the real scientific research and evidence.

    All the lovely stuff that comes out of labs. Because they are not "clinical trials".

    How can we change this?
  8. alex3619

    alex3619 Senior Member

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    Yes @peggy-sue, its the rules of evidence for "evidence" based medicine. This is a diagnostic review though. If they insist on clinical trials, they are discredited. The evidence based standards for diagnostics are different than for interventional studies, and interventional studies on drugs may be considered different to psychiatric interventions as drugs can be double-blind RCTs and psych studies cannot be.

    What they will insist on is higher class evidence. I am looking into this matter but will be to busy till after today to do much.
    Last edited: Nov 24, 2013
  9. Ecoclimber

    Ecoclimber Senior Member

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    IMPORTANT:
    Even in this and other communities patients are arguing over who has what because of various sysmptoms. Who has ME, CFS, EDS, etc. A patient community divided will not stand!!

    Many patients are arguing for a ME label but the fight is with the IOM and HHS for now. If you want public and media opinion on your side, please do not confuse the issue by injecting terms unfamiliar with the general public, it is best to use ME/CFS, CFS or chronic fatigue syndrome. I notice patients using IOM in their comments. Remember the general public does not KNOW the terminology that medical and patient community uses. Your target is the general publice! Please spell the acronyms out so that the public will know what you are talking about and search engine ranking will pick it up!

    Dr. Peterson @ Enlander conference:" evidence-based medicine is a problem b/c there is little of that in ME/CFS."

    And as I mentioned in several of my posts because of EBM, ME/CFS will be ruled a psychogenic disorder based on the previous rulings from the IOM.
    Delia, justinreilly and alex3619 like this.
  10. alex3619

    alex3619 Senior Member

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    Actually I disagree with the interpretation of Dr. Peterson, though I don't know if this is because his view is presented in a simplified manner, or he failed to spell out the caveats.

    ALL medical evidence is evidence-based. Its the grade and therefore the presumed reliability of that evidence that determines probable recommendations.

    The Institute of Medicine review is NOT evidence based if it is using the evidence level of psychogenic interventional studies to support a diagnostic review. They need to be separately rated for a diagnostic review as the purpose is different.

    There is an issue with psychogenic studies in that the primary hypotheses are all evidence grade 5, the lowest. They are based on psychiatric first principles, not proven diagnostics. Psychiatric first principles are not even substantially objectively based, its nearly all subjectively based.
    peggy-sue likes this.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    She is in the Phillipine Senate, not US.
  12. Izola

    Izola Senior Member

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    Ecoclimber likes this.

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