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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. Bob

    Bob

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    Personally, I support what Mark has said about this issue, in/after the outline of the presentation.
    Last edited: Jan 21, 2014
    Snowdrop and Sparrow like this.
  2. Bob

    Bob

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    Mark and Kina... Amazing job... Especially considering the short amount of time... Broadly speaking, I support the outline that you have posted above... Thank you.
    Last edited: Jan 22, 2014
    leela likes this.
  3. Sparrow

    Sparrow Senior Member

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    Thank you for putting together a statement that does a good job of representing what was discussed here. I really like the idea of using our protests to give productive advice, by asking them to consult with patients, defer to the experts, etc.

    The only part of the statement that concerns me a bit is the emphasis on strictly requiring test abnormalities for an ME diagnosis. I most definitely fit the CCC criteria. I have been diagnosed by specialists. I have textbook ME. ...But I do not show many of the common test abnormalities. Many of the ones we have seem to show up in most patients, but not all.

    In the second point, could we instead say something like an ME definition should be based on test abnormalities where they are present, and definitive neurological symptoms and post exertional malaise where they are not?

    And would it be possible to amend the first point to emphasize CPET testing except in severely ill patients. I just don't want to see misguided doctors requiring exercise tests for people who can't even crawl to their own bathrooms.
    Snowdrop, beaker, SOC and 1 other person like this.
  4. Bob

    Bob

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    That's the only reservation I had as well, but on balance, I think it makes a good political point. i.e. it may open the eyes to committee members that there are biological abnormalities in ME patients. I'm certain that they will dismiss this demand, but it makes a point. I support the points you have made in your post, Sparrow.
    taniaaust1 likes this.
  5. Ember

    Ember Senior Member

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    See the ME Primer's Laboratory/Investigative Protocol: “Diagnose by criteria. Confirm by laboratory and other investigations. A broad panel of tests provides a more robust basis to identify symptom patterns, abnormalities and orient treatment” (pp. 11-12).
  6. Sparrow

    Sparrow Senior Member

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    I would be comfortable saying something like that. I just feel a bit off recommending the original statement when that criteria would probably exclude me from having this illness (as much as I'll love to get rid of it, that's only a good deal if the symptoms go too ;)).
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  7. Ember

    Ember Senior Member

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    Clinical Working Case Definition of ME/CFS
  8. Mark

    Mark Acting CEO

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    All the summary statement are my own rough drafts; feel free to propose specific re-wording of the text but I am going to need that specific re-wording rather than general points if I'm going to have a chance of getting this ready in time.
    Bob likes this.
  9. Mark

    Mark Acting CEO

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    PS: I forgot to mention that the presentation can be delivered via the web, it's not necessary for the presenter to attend the meeting in person.
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  10. Bob

    Bob

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    The CCC do put more emphasis on the word/symptom 'fatigue' than I'm comfortable with.
    However, Mark is right to say that we are not talking about fatigue.
    I think it is helpful to refer to the ICC in our submissions.
    beaker and SOC like this.
  11. Legendrew

    Legendrew Content team

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    Just wanted to add my opinions on the major topics you've outlined
    • The criteria used so far (like Fukuda, Reeves) have been so broad as to make the research evidence based on those criteria largely useless: we argue for the recognition of an ME definition, nothing less than the CCC or ICC (as an interim pending further research, and ultimately, ideally, a tighter definition than even the ICC). The definition should include PEM/PENE (operationalised by CPET testing), neurological and immune dysfunction, with testing for known abnormalities mandatory. (Firestormm 4, 50, Slayadragon 5, Daisybell 16, taniaaust 20, ecoclimber 44, Roseblossom 46, 51, Ember 56, 82, Nielk 76)
    I agree almost entirely with this point however I'd like to raise the point that going forwards we are likely to find more bio-markers of ME/CFS, it is therefore worthwhile ensuring the definition has room for expansion and it is likely that as time progresses the definition may have to be entirely re-worked.
    • ME should be separated out from Chronic Fatigue and 'CFS'. Chronic Fatigue, CFS and ME are separate entities. An ME definition should be based on test abnormalities. CFS should be dropped. Chronic Fatigue isn't relevant to ME. (taniaaust 20,22, bob 42, Lnester7 45, Beaker 71, 72, Nielk 76)
    I'm not sure I 100% agree with this, more I believe the name is a topic all in itself and should likely be changed only when sufficient scientific data has been gathered to give the disease a fitting name. Both CFS and ME have problems, given that CFS is too broad a term and seems too much like a waste basket diagnosis and there is no reliable and consistant evidence to support the 'encephalomyelitis' of ME. A name i've seen discussed numerous times is Myalgic encephalopathy which appears to be more consistant with a disease that is currently classified as a neurological disease.
    • The illness we are talking about is not about fatigue. This illness is also not about depression, deconditioning, childhood abuse, somatization, personality disorder, laziness, malingering, hypochondria, or unwellness. (SOC 6, Nielk 8, Sparrow 10, bob 42, ecoclimber 44, Lnester7 45)
    Further to the points raised, I'd like to emphasise that many patients became ill very suddenly - leading a normal and healthy life up to this point. This likely causes a lot of distress and upset, however this is the same in any organic disease and does not verify a psychological disease, it merely verifies the distress such disability can cause.
    • The panelists need to understand how severe the disease can be, and have a definition focusing on the core of the most severely affected. The disease we are talking about is a complex, serious, debilitating, multi system disease which leaves its patients disabled. There is a wide variety of symptoms. Half of patients can't work and a quarter are left bedbound. Panelists need to recognise the varying severities and the impact on patients' lives of the various disability levels. (Sparrow 10, 104, Firestormm 21, Beaker 49, Nielk 76, Ritto 112)
    I'm not sure the definition should be built specifically around the most severely effected patients as this could end up discounting ME patients who may not have such a severe degree of disability, however it should emphasise the vast array of disability severities that can occur and how patients can move between these levels very quickly during times of relapse.
    • Our presentation should challenge the concept that ME/CFS is a psychological or psychogenic condition and call for such research to be disregarded in relation to the EBM base for ME. We could show examples of past illnesses once thought psychiatric and now known to be physical (eg Ulcers/H. pylori infection, Multiple Sclerosis, Diabetes). Research which describes a putative 'functional disorder' should be ignored and dismissed in relation to ME. (A.B. 34, bob 42, ecoclimber 44, Alex 52)
    I think an important point to make here is that among patients and ME experts, both doctors and researchers, there is no doubt that ME is a significantly debilitating organic disease. The point regarding past diseases classed as psychological diseases is a strong one which cannot be understated. Far too often have organic diseases been incorrectly identified as psychological in nature despite lacking research, such events are catastrophic to further research into the condition and past mistakes should not be repeated over and over. There now exists enough research data to support the notion of ME/CFS as a physiological disease.
  12. Ember

    Ember Senior Member

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    Myalgic encephalomyelitis: international consensus criteria
    Last edited: Jan 21, 2014
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  13. Andrew

    Andrew Senior Member

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    Where does it say this? I didn't sign up because they told me I could not present from home. If it's not too late for me, where do I sign up to present what I wrote?
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  14. Nielk

    Nielk

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    This is only for the invited presenters like Phoenix Rising. Mark is looking for someone to present PR,s comment.
  15. SickOfSickness

    SickOfSickness Senior Member

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    I like this very much.
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  16. SickOfSickness

    SickOfSickness Senior Member

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    Izola, K2 for Hope and SOC like this.
  17. Ren

    Ren Primum Non Nocere

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    Some, at least, of the Gulf War IOM presentations have included titles, so I would suggest a minimal title that emphasizes/advocates a chosen point/message. And for my own conscience I still have to advocate some kind of in memoriam end note, if only a very minimal line/quote/reference to honor and humanize. Governments sanitize, patients humanize.

    (Thank you, Mark, Kina, and all.)
    Last edited: Jan 22, 2014
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  18. taniaaust1

    taniaaust1 Senior Member

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    Maybe doctors would of accepted the CCC if it had been pushed by places like the CDC etc and made so it is acceptable instead of them pushing other defintions (how many doctors would go against their own health system views? not many I think) . I dont think we cant say that it cant be accepted just cause its been around for 10 years and so far hasnt been.

    The CCC has never been given a chance in America.
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  19. taniaaust1

    taniaaust1 Senior Member

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    Im thinking like Nielk.. if ME was taught in medical school maybe doctors wouldnt have trouble at all using something like the CCC.

    Other complex illness do not have general GPs diagnosing them.. what happens is the person is sent to a specialist for diagnoses etc.

    Any diagnostic criteria other then a complex one, isnt going to be good enough for ME.
    Nielk likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    I ask PR to say this as clearly as its been put above . If the poll comes up with the majority here saying this (which it really was the last time I looked by the poll.. you can only go by a poll!!). or if you arent comfortable with that.. express the poll result in a percent.. eg A poll showed that 80%?? of PR members oppose the Iom contract and support experts letter etc.

    Thou I wasnt listed as one of the ones saying that, I too feel like this a very important point to make a clear stance on this.

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