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What Should Phoenix Rising Tell the IOM Committee?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Mark, Jan 8, 2014.

  1. Nielk

    Nielk

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    I really like this, Ren.

    In addition, I was thinking that since we have the ability to show a presentation is to show real data from real seriously ill patients. For example,

    Joe smith fell ill 15 years ago at age 48. Used to be a brain surgeon - now can't tie his own shoelaces.
    Bill Johnson was struck on January 8th 1995. Used to play pro-football - now needs the use a wheelchair.
    Lilly Doe was 32 when got sick with ME in 2007. Used to be bank manager - now disabled from work and homeless.

    and so on...
    taniaaust1 and Ren like this.
  2. Ember

    Ember Senior Member

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    Considering both the experts' letter and the mandate outlined in the Statement of Work, I would rather ask the IOM panel to endorse either the CCC, or if more recent research is needed, the ICC:
    taniaaust1 and beaker like this.
  3. lnester7

    lnester7 Seven

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    I sent my written testimony. I said ME in a nut shell is inability to produce energy on demand and you getting worse when you push through it. I gave my whole story too.

    I focused on my symptoms, successful treatments and my abnormal tests.

    I received an email back that the comment will be submitted in public record. We need to overwhelm them prove of decease
    rosie26, beaker and WillowJ like this.
  4. hikinglo

    hikinglo

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    I also love Ren's basic idea (more below, #2 & #3).

    But my preference would be:

    (I had a long answer, but I have those arguments posted elsewhere. I'll reword them here if necessary.)

    1) My first comment would be for PR to completely boycott the IOM meeting: They do not exist in our eyes. Turn our attention / batteries toward our own experts, acknowledge, validate and fully support their decision to adopt the CCC, unwaveringly. If you have to respond in some way, tell IOM (HHS) that "We the Patients, for whom you work, did not authorize this ambush agreement between HHS and IOM. Our long-time experts are our trusted, worthy advisers; the government once again - like so many times before - has proven itself unworthy of our trust. You are fired."

    If you insist on wasting precious energy by going in person, say this loud and clear, then turn and walk out. Make no apologies. If anyone deserves an apology, it's the patients, as Dr. Montoya rightly says.

    (I saw Adin mentioned "esteem". The only esteem I have is for our ME and cfs experts who have stood with us through decades of their own ridicule. It is the very crowd of esteem-seeking, main-stream medicine people, like those at IOM, who have dismissed us and/or fed us to the shrinks for 30 years.)

    2) Now, Back to Ren's comment: If you insist on acknowledging this unauthorized group, go with Ren's point #s 1 & 2. Maybe slight rewording, like, "This secret contract is not wanted and was not authorized by the constituents it is alleged to represent".

    3) Then, with whatever time you have left (3, 5, 7 min - who knows?), as Ren suggests: Therefore, we will use our time "...to honor all those - civilians and veterans - who have died "naturally" or by their own hand, due to past and present state-and-corporate coerced medical negligence..." and begin reading the long list names on the Memorial List(s). Start with the most fresh in our minds and notable:

    Casey Fero
    Tom Hennessy
    Sophia Mirza
    Lynn Gilderdale
    Nancy Kaiser (Dr. Dan Peterson's "Patient 00") ...

    ... and add the years our fellow patients died, starting way back in the late 80s.
    http://www.ncf-net.org/memorial.htm

    I guarantee you will raise the roof on that 'meeting' by doing either of these things. And bedridden patients in dark rooms across the world will be flipping their Bics to honor PR as heros!
  5. Ren

    Ren One of nineteen million dark horses.

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    I could only do what I wrote, if speaking on my own behalf. I couldn't do that on behalf of the group because it wouldn't reflect/express the important points everyone's made. I do like the idea though of trying to incorporate, if only briefly, a statement of respect for those who've passed on or are too ill to even share their voices. It seems the policy makers are fighting for policy, and not for people. We're fighting for people.
    Izola, taniaaust1, leela and 3 others like this.
  6. alex3619

    alex3619 Senior Member

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    Part Two of the IOM question.


    What should the IOM ignore? Any claim that ME is psychogenic.


    First, the general reason. How many diseases has this been claimed about? How many have been proved right? How many have been proved wrong? Think about that. The batting average is zero to very many.

    Second, all psychogenic disease is based on a logical fallacy, called the Psychogenic Fallacy, and written about by Sykes.[3] If a cause is not known, then its not known. This is so obvious yet it is so often ignored. It may or may not be a mental issue, its at best a guess, and there are clear biomedical issues. So very many claims have been shown to be something biomedical and not psychogenic, from epilepsy and diabetes, to MS and gastric ulcers. Research proceeding from a presumption of psychogenic disease is flawed.

    Third, much of their own research is an own goal. The PACE trial published in The Lancet in March 2011 showed about 15% improved beyond the control rate of improvement, and even that was small and subjective improvement. Its easily accounted for by bias in the study design and implementation. They dropped actometers from the study, despite planning to use them, at a time when other studies using actometers showed either no improvement or a decline in function. Here is one thing that is inescapable: they show no substantive objective improvement in functioning of patients from CBT/GET, nor do any other studies. They should not have dropped the actometers. There are numerous other methodological and statistical flaws in the PACE trial, but there are too many to mention here.

    All psychogenic illnesses are hypothetical. Treating them as more than that is probably unethical and immoral. Its what Karl Popper called nonscience.There is a huge difference in how the world treats mental diagnoses, in society, organizations and in medical practice. Most of psychiatry is not scientifically based, but that does not mean it cannot be rigorous. The problem is that once its thought of as scientific its presumed that standard scientific practices are adhered to. To a large extent they aren't. So a study that meets the technical basis for a high standard of evidence, such as an RCT, may be actually a very poor study due to its methodological failures. Methodology matters.

    As patients we have a right to dismiss such baseless and nonscientific medical claims. We have a right to reject treatment based on such claims, but agencies often force them on us, either as a requirement for compliance or through sectioning. We also have a right to object to such large research budgets for psychogenic medicine when many findings in the biomedical science cannot be replicated due to lack of funding, and when such funding leads to a distortion in the evidence base. We have a right to there being no undue influence toward a new definition based on psychogenic studies.

    If we have a psychosomatic illness because a physical illness cannot be objectively shown, how is a psychosomatic illness any more valid since it cannot be objectively shown? Yet there IS biomedical evidence for ME, but the same cannot be said for any psychogenic disorder.


    [3] Medically Unexplained Symptoms and the Siren “Psychogenic Inference”
    Richard Sykes

    From: Philosophy, Psychiatry, & Psychology
    Volume 17, Number 4, December 2010

    [4]http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract
    SOC, Persimmon, WillowJ and 1 other person like this.
  7. alex3619

    alex3619 Senior Member

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    I currently think rejection of the IOM process should occur but take no more than ten or twenty seconds, and be at the end of the presentation, as a political statement.

    Short terse focused statements are needed for the most part, but written testimony can also be submitted, and it does not have to be so brief. Hence further justification can occur in a written document, beyond what is spoken.

    If we wish to rely on AV presentation, including power point slides, then we need to be really sure they are set up to accept such presentations. They might not be.

    The "aspect" part of the question gives us a basis for political comment: “What is the most important aspect or information that this committee should consider throughout the course of the study?” So political comment is not outside the scope of the question.

    What this really boils down to is the HHS and IOM have lost the respect of the ME and CFS communities. They are being closely watched, and any report will be scrutinized intensely.

    PS Does this mean PR might give a written as well as a spoken commentary, and that most of the issues we have raised can be considered in the written testimony? I think so. Does anybody know if this will be allowed? This might also permit a minutes silence for all those who have passed on, as the bulk of the detail would be written.
    taniaaust1 likes this.
  8. barbc56

    barbc56 Senior Member

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    I don't think that is true of the whole me/cfs community.
    Sparrow likes this.
  9. alex3619

    alex3619 Senior Member

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    Agreed, but most of the community do not actually appear to even be aware of the issue. As always this is a fractured community. I predict most of the others who currently respect CDC, HHS and IOM are going to be very unhappy with them in about two years time. I would really like to be wrong about this though.

    If we want an idea on numbers, we really need some polls.
  10. Marty

    Marty Senior Member

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    Tell them that everyone who did their homework to prepare for this meeting by going to the CDC website received incorrect information and should mark it as such in their notes. The CFSAC and patients have requested that it be taken down as not only incorrect but harmful, but Dr. Unger has refused, despite recommendations, requests, and petitions to do so.
  11. Chris

    Chris Senior Member

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    As I understand it, this is a meeting with the panel, not with the IOM as a body. Nancy Klimas worked on both the CCC and the ICC, I believe; I would be a little modest in advising her? Chris
  12. golden

    golden Senior Member

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    I should like clarification on this.
    Unfortunately, I am not understanding the full dynamics and so have been unable to comment.
  13. Nielk

    Nielk

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    This open meeting will be in attendance with the panel of fifteen selected by the IOM for the study to define ME/CFS. - http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49592

    This panel is made up of about half known experts in the field of ME/CFS and half 'unknowns'.

    I think that what Chris was referring to is that an expert like Nancy Klimas does not need advice from patients of how to classify and/or define the disease.

    While this may be true, the half of the panel who have no knowledge/experience in the disease, need as much guidance as possible. (in case this IOM study persists to continue)
    dannybex, taniaaust1, WillowJ and 5 others like this.
  14. golden

    golden Senior Member

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    Thanks Nielk.

    Is the presentation then to a group of individuals?

    Exactly how many are experts and how many non-experts? If non-experts, what are they a non-expert in?

    When is the deadline for thread contributions as i feel really ill. ?

    Golden
  15. Sparrow

    Sparrow Senior Member

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    I agree. I think Ren has written a powerful statement of his objections, but I don't think that the PR presentation is the right place for it. By its nature, Phoenix Rising is made up of a diverse group of individuals with their own differing views on this issue. There are a lot of places where people seem to make assumptions about what all patients here feel about the contract, or how we want to proceed, and we're just not actually that uniform.

    As others have suggested, it seems to me like it might be most fair for the PR presentation to include sincere answers to the question posed by the committee, combined with some sort of brief formal statement of protest at the end. That way you answer the question asked, but also log objections to the contract for the record. It seems like a reasonable compromise.

    People with more extreme views on either side (wanting to protest exclusively, or wanting to actively support the government finally taking some action) can send their own written statements for consideration, to the e-mail address given earlier in this thread. But it seems wrong for the PR presentation itself to exclude either group too badly.
    SOC, WillowJ, barbc56 and 2 others like this.
  16. taniaaust1

    taniaaust1 Senior Member

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    I really like this idea.. slides with photos of people with a sentence on their worst symptom or issue with this illness. It could be something which could quite make an impact

    eg for myself.. I could make any of the following statements
    "I need to now shop in a wheelchair and have someone push me as I cant push myself"
    "bedbound by this illness and unable to walk, for 9mths my 10 year old had to take care of me"
    " my bowel prolapsed cause of the IBS-C due to ME"
    " I put myself into jail knowing I'd not then be missing my meals due to being too sick to cook"

    Big impact statements of the real effects of this illness. We soo need to get throu to the committee members who dont know nothing much about our illness of just how severe it is. Probably thou not enough time to arrange something like that. We so need to get that committe aware that there is far more to this illness then fatigue, headaches and lack of sleep.

    I think the photo idea with someone reading each persons sentence statement would really grab the attention of the committee members (it certainly wouldnt a boring talk if they've already heard many others).

    Actually there could be time to do some of this if it was called for people to start sending it photos and their each persons hard hitting statement of their illness (even if there was just 5-10 of these from this community, it would make the PR talk that bit more interesting and turn it into being "real people"). It would also give people here a chance themselves to have like their voice heard even if Mark or another was reading out the statement.

    At the end of the photo/statement part.. it could be finished off by a plea to not let us all down by not taking this illness as severe as it is.

    The most important aspect that the committee needs to hold is the seriousness and symptom complexity of ME. (hence that photo/statement idea would cover addressing the question put to PR). I dont want them to forget that while they are looking throu the research etc that there are lots of us extremely sick with complex symptoms.

    You could also point out all the photos are ME patients not CFS patients (if you just called for photos from ME people.. most of us here are that anyway).
    Last edited: Jan 14, 2014
    Nielk likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    adin.. you are doing an amazing job trying to get this together..
    WillowJ likes this.
  18. taniaaust1

    taniaaust1 Senior Member

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    oh lol.. I so like that dream.

    But I was just thinking that protesting at the time this all is being held would be a good time to protest.

    It would be great to have people with signs saying "We want the CCC" "Stop wasting tax payers money on the ME/CFS IOM contract" etc
  19. taniaaust1

    taniaaust1 Senior Member

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    Yeah but the science they are reading itself matching what they've heard coming from patients, it shows there is something really wrong eg badly done science going on.

    The science should tally with the illness patients describe.
    WillowJ likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    I dont think there is enough time in the time being given to get into that at all as its complex. Hopefully the ME aware ones on that panel will be able to help the others with that.

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