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Live webcast IoM meeting Jan. 27th 1:pm starting

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 27, 2014.

  1. taniaaust1

    taniaaust1 Senior Member

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    I knew that would be suggested.. Im sure they would like it to given the same name as they've given the gulf war syndrome group... whatever that crap name was.
     
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  2. taniaaust1

    taniaaust1 Senior Member

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    :rolleyes:
    Umm reviewed by who I wonder? Reviewed by mostly Wessely schoolers? Reviewed like the many flawed ME/CFS studies out there who have some how passed reviews and got into journals?

    Will these reviewers be secret ones? men with invisible faces?

    Yeah Im sure hearing its going to be reviewed makes us feel a whole lot better about it
     
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  3. taniaaust1

    taniaaust1 Senior Member

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    Im so glad to hear that, that is so needed
     
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  4. taniaaust1

    taniaaust1 Senior Member

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    I agree. If the general medical practioners find the CCC too complex for them to use.. there is no way they are going find another "suitable" ME defintion easy to use either.

    The definition being used should be put in the hands of a specialist field and taught within that field. GPs with not enough schooling in this complex illness shouldnt be the ones who are having to diagnose and deal with it. In this regard, IOM can only fail if their task is to come up with an easier defintion for GPs to use.
     
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  5. taniaaust1

    taniaaust1 Senior Member

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    LMAO. thanks, that's so funny.
     
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  6. leela

    leela Slow But Hopeful

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    I'm sorry but people who went through at least 8 years of higher education find the CCC too complex to use, but patients and ME specialists wrote and understand it? Who do they think buys this baloney?

    And yes, I agree, a specialty (or three) needs to be assigned to this disease. Is the material for understanding cerebral palsy a one-page handout?
    Is there a 4-color pamphlet for non-hodgkins lymphoma or ALS? Give me a break.
     
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  7. taniaaust1

    taniaaust1 Senior Member

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    I feel the same way about this.
     
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  8. taniaaust1

    taniaaust1 Senior Member

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    What's the bet that ordinary general practioners dont diagnose those diseases.... so why are they wanting them to define our serious complex illness. Expecting ordinary GPs to be dealing with our illness just shows how determined they are for it to not be getting taken seriously and how much they want keep it downplayed.
     
  9. alex3619

    alex3619 Senior Member

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    Yes, they trot out pathetic explanations, it seems to be a pattern with a number of people pushing alternate ideas to the mainstream research view. The definition is as complex as it needs to be. If the documentation is too complex, then perhaps easier to read documentation would help, or an expert system to walk the doctors through it that can be downloaded for free.
     
  10. leela

    leela Slow But Hopeful

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    Dude, if We the Brianfogged can understand it....

    If they're not going to give us a cure, they should at least hand us all honorary PhDs.
     
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  11. Ember

    Ember Senior Member

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    According to Dr. Peterson, "You can simply tick through the questions:"
     
    Last edited: Feb 1, 2014
  12. Firestormm

    Firestormm Guest

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    Peterson talks about CDC and CCC from 11minutes into that video...

    There are I think critiques that can and should be made of the CCC but as a supporter of it myself, I simply think it's probably the most reasonable one we have and as it is used widely now in research, it makes most sense to at least begin a review based on this one.

    Without looking at it again right now, one of the issues I had was that it includes other diseases as possibly something that PwME might also require or show signs of for a diagnosis of ME e.g. (from memory) Ataxia. This and other things, are perhaps reasons why it is not as acceptable as it might be.

    I do wish we had had the time to properly review the definitions ourselves and to have included a summation of this in our presentation: but again we are limited by what we can do, and I think we should reasonably expect others to achieve this end.

    I think though - Dr Enlander - was correct and this could have been discussed and harmonised openly. But we are where we are now. And I hope that if those ME clinicians and researchers on the IOM have not been too discouraged by events the other day (and do not themselves resign and leave the panel bereft of their expertise), these issues will now be discussed and ironed-out.

    However, I am left wondering why it is that given our state of knowledge and lack of biomarkers, we can't get by with one definition for research and clinical diagnosis. Maybe that will be the end result - but all it takes is for a discovery to be replicated in the meantime: and the game changes yet again.

    Of course the same could have been said at any point in the last 50 years and it hasn't happened yet. For me at least, a new a more closely aligned definition to CCC is warranted now. People in the USA and across the world as a result - need to feel reassured that they have as firm a diagnosis as is possible to provide.

    We do need to drop CF out of the equation and create a single entity of ME. Though I doubt very much if Encephalomyelitis will be the new name - and still prefer Encephalopathy. But, presenters were probably right in that environment to repeatedly use the traditional Encephalomyelitis.
     
    Last edited: Jan 29, 2014
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  13. WillowJ

    WillowJ Senior Member

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    Encephalopathy means too many things. It can refer to just about any kind of brain disease which is considered to be organic, but it can also refer to disease which is considered to be psychiatric. That is about as useful as "functional", which is to say, would likely do more harm than good in a case where the disease is contested.
     
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  14. alex3619

    alex3619 Senior Member

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    There is a huge problem with the name ME-yelitis though. I have discussed this a few times now, but to most doctors ME=CFS=nonexistent, or wastebasket, or psychogenic. This was largely due to the 1970 McEvedy and Beard paper on the Royal Free Hospital ME outbreak.

    ME is much better than CFS, but its still tainted. ME-opathy is in between - not as specific (too vague) but better than CFS, though still tainted.

    We need an entirely new name. However I think ME is best as an interim name until we find a cause, then we immediately adopt a new name to reflect that cause. Alternatively we might rename ME based on strong pathophysiological findings, in order to reflect symptomology and testing rather than causation. Or we can simply go to Ramsay's Disease, which says it all to those who know, but nothing to those who don't know anything about it.

    On the other hand I have repeatedly warned that even before a new name is adopted, but only under consideration, psychogenic proponents will be pushing that its just another way to avoid calling ME a psychogenic illness. They will taint it very fast.

    Now I do agree we should be using an ME definition, like the CCC or ICC. The name is more problematic.
     
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  15. WillowJ

    WillowJ Senior Member

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    I agree with all that, Alex, but I learned in school that naming after people is no longer done. It's considered too much of a bother to change the name after an appropriate interval after the person has died, and the name of a scientist tells one nothing about the disease (as if CFS does, but that's another way they didn't follow usual procedure in this case).

    ME-itis does seem our best option for now until we get some more and definite science, unless we want to name it for an immune insufficiency (though that would miss the autonomic and neurological problems, but I'm not sure how to get everything into one name--I'd have to get out my word roots book and it would end up long and unpronounceable again). Too late at night to fuss with that now.
     
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  16. Firestormm

    Firestormm Guest

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    I was before of the opine that Ramsay's Disease - like Parkinson's - was the way to go. Maybe it still is especially with our current state of knowledge. Quite how difficult it would prove to be - renaming a disease or diseases - at this stage I don't know. Never really considered it beyond the arguments over suitability of Encephalomyelitis on forums before. But Ramsay never discovered the cause - though I am unsure if Parkinson did either - but Ramsay did attempt to define it and of course study and report on it.

    Whatever way this goes - I do believe that any attempt to change the name that stems from the IOM will be most vociferously debated and opposed (if some sort of unsatisfactory hybrid is determined) on the forums. Perhaps more so than a definition.

    For many reasons, a name is held to be of utmost importance among patients (including myself) and again it is perhaps a shame - though understandable - that we didn't see more discussion about alternatives in the presentation or at least attempts to overcome what we might expect to be opposition to Encephalomyelitis.
     
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Alex, ME as a name is tainted in Australia and the UK, but isn't tainted in the US- noone, including doctors, have heard of it.

    I think we just really need to go with ME, since it is acceptable and has all the momentum behind it. I think Ramsey's Disease and others are good too, but I really think we need to stop debating and just unite behind acceptable/good measures that have momentum that we can all agree on- ME as a name, cancel IoM contract, adopt CCC, etc. and focus all our effort on getting them adopted. Really, united, clear demands are the key.

    If someone has the time they can still go and put together the case for ME-itis. We could distribute it to all panelists and encourage the experts on the panel to push for it. Theoretically and hopefully, the experts would do this themselves, but considerations of manpower to do this aside, it would be important not to leave that to chance.

    Whether we have the manpower to do this is another story. However, this is a discrete enough topic that some may already be experts in it, like Lenny Jason or some patient i don't know of. That is too technical for me and I am too sick and have other things going on. I think this would be something great to pitch to the science people on the forum, Alex. If none can do it, maybe we could ask Lenny Jason to get one of his people to do it.

    We are going to need to really definitively address the ME-itis case at some point soon regardless, especially if the IoM don't pick ME-itis. I say we (i.e. someone, not me :)) try to get our ducks in a row now on this issue and get a clear, solid paper on the evidence together soon.

    Although, this issue seems to merit taking a backseat to addressing in a paper exactly why EBM is unsuitable for this ME redef. process and we don't have anyone working on a paper yet. So, imo, "we" should start with the EBM issue.

    Alex, I think you've enquired with the science people on PR about helping out with this and got nada? Is there any possible way to keep asking or ask in a new way that isn't futile? Any possible place we haven't asked yet? Could you use help asking?? Is there someone we can ask to help you ask? :)

    You've said that the science people don't like politics so they totally avoid it. I guess the pitch would be, which you've probably tried, that we need to change the process from a political one to a scientific one and the only way to do that is to enter the actual science into the marketplace of ideas, i.e. in this case, the IoM committee, and show why it is the best existing science.

    What do you guys think?
     
    Last edited: Jan 29, 2014
  18. alex3619

    alex3619 Senior Member

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    @justinreilly, I have asked around science people, but not much here on PR. EBM does need to be tackled, but our first problem is what style of EBM. What are they using? The IOM documentation is not clear. Further, the P2P uses evidence based literature searching, and the claim was made at the public IOM meeting that it is well characterized and public. I have yet to look into this.

    I have an old contact who signed the advocates letter. I want to contact him again soon, presuming I still have his contact details.

    The EBM issue is not so much about the people, its about the process they are using. Capable people can still be railroaded using the process. The more choice the IOM panel has, the better. But what about the two review groups? They are an unknown.

    EBM is technically not really science. Its a managerial process to translate science into clinical practice or into public health policy etc, or into simplistic "evidence" based reviews that often miss the important science. Its too much about numbers and simplification, and serious issues in the studies they use in a review can be ignored. It uses science, but is not itself a scientifically validated process.

    I have started writing a blog on some of this, or perhaps a letter, or perhaps something else. Its still very early on.
     
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  19. Ember

    Ember Senior Member

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    Because she read Dr. Maryann Spurgin's testimony, I missed the statement by Charlotte on Salis. It's been posted here, here and here now, and it bears repeating:

    “Following is the comment written and presented by Charlotte von Salis, J.D., at the Institute of Medicine meeting on January 27, 2014.”
     
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  20. Nielk

    Nielk

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    It was brilliant and perfect as the 'closing' if all the advocates' contributions.
     
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