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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. Mark

    Mark Acting CEO

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    The Institute of Medicine (IOM) has invited Phoenix Rising to make a presentation to the Institute of Medicine Committee on ME/CFS. The committee's first meeting will be on January 27-28, 2014 in Washington DC, and there will be an 'information-gathering session' on the afternoon of January 27 that will be 'open to the public, both in-person and virtually'. We have been invited to speak to the committee during the afternoon session, and to prepare 5-7 minutes of remarks in response to the following question:

    “What is the most important aspect or information that this committee should consider throughout the course of the study?”

    We want our presentation to fairly represent the views of our members, so we are inviting members to give their thoughts on this thread regarding what we should say to the IOM Committee in answer to this question. Please keep your points as succinct as possible - bearing in mind that we only have 5-7 minutes. Towards the end of this thread, I will do my best to summarize all the points made into an outline of our presentation, and we will try to include in our presentation as many of the views expressed on the thread as we can.
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  2. Mark

    Mark Acting CEO

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    I've had a little think about what I might say to the committee, so for what it's worth, and to get the ball rolling, here are my own personal thoughts about points we could include in our presentation...

    This is just a first rough draft, and I'm sure I've missed out a lot of important points, not included the best available supporting arguments, and made some possible tactical errors along the way. I'm also sure that members can do a lot better, I'm just posting this as a discussion-starter. But reading this aloud to myself I find that it does last about 7 minutes, so it at least has the virtue of being roughly the right length; perhaps it will be a useful guide as far as length is concerned...

    • This IOM study is strongly opposed by a significant proportion of the ME/CFS community and by a large number of leading ME/CFS experts. On January 2nd, leading experts like Lenny Jason, Dr Chia, Dr Cheney, Dr De Meirleir and Dr Enlander signed another letter sent to Secretary Sebelius re-iterating their opposition to the IOM's involvement in re-defining the disease. The IOM committee should be well aware that the majority of the patient and expert ME/CFS community is strongly opposed to this exercise and a significant proportion of the community are refusing to participate in it in any way because they do not want to be seen as legitimizing this process.
    • The contract for this work has still not been made public, despite the contract having been announced 4 months ago and despite Freedom of Information requests attempting to access the contract. This and many other failures in communication mean that the community do not trust this process at all and do not recognize this committee as legitimate.
    • Contrary to what has been claimed, this exercise is absolutely not what the CFS Advisory Committee asked for in its recommendation. CFSAC was not consulted with regards to the forming of this contract and CFSAC members have also stated their opposition to this process.
    • The 'evidence-based' process with which this committee is being tasked is a dangerous and inappropriate process to answer the question of defining ME and/or CFS. Requiring only 'evidence-based' research evidence to support a disease definition in a situation where the level of research funding has always been pitifully low, and where it is patently obvious that the well-funded 'evidence-based' psychogenic research (such as the PACE trial) is fundamentally flawed and misleading, is misguided at best and abusive at worst. The appropriate methodology for defining ME and/or CFS is through the consensus of experienced practitioners, and this work has already been done.
    • The overwhelming majority of leading experts have re-iterated their agreement that the CCC should be adopted immediately. It is inconceivable that this committee, however well-intentioned, will improve upon the excellent work of the experts who constructed the CCC and ICC definitions. The committee - assuming it proceeds with this exercise - should therefore recommend the adoption of one of those definitions.
    • Assuming that the committee is going to proceed with its misguided attempt to re-define "ME/CFS" despite lacking the appropriate expertise to do so, we urge it to start by asking itself which disease or diseases it intends to define? Does the committee intend to define ME, CFS, CF, or all three? The concept of "fatigue" as a central characteristic describing the illness is considered to be totally inappropriate and insulting by the majority of the community of patients which we represent. "Fatigue" is not a disease. Nearly all diseases have "fatigue" as a consequence. Defining "CFS" based on the concept of "fatigue" has historically been nothing more or less than a means of belittling and obfuscating the nature of ME. If the committee intends to define some kind of 'fatigue syndrome' - a concept which we are opposed to - then it is at least beholden on the committee to also recommend a separate definition for the complex, multi-system, neuro-endocrine-immune disease known as ME. Continuing to dump patients with ME into a "wastebasket" diagnosis like CFS or CF is unacceptable. This is nothing more than a mechanism to deny any hope of proper research and treatment to chronically ill and disabled patients and it is morally reprehensible that this situation has been allowed to continue for so long.
    • We would also like to point the committee at the work of Dr Julia Newton, who found in one study that as many as 40% of ME/CFS patients who were diagnosed using the broad 'Fukuda' definition actually have other, undiagnosed, illnesses. It is important that the committee understands that in reality a very high proportion of patients with this diagnosis have other illnesses and that the ME/CFS definition is in practice being used to deny them proper medical testing and treatment.
    • In summary: the legitimacy of this committee is not recognized by the ME/CFS community, this committee is strongly opposed by patients and leading experts alike, the formation of this committee and its contract has provoked enormous anger amongst the community, and the nature of this committee's task and methodology is wholly inappropriate and potentially extremely harmful to the patient community which we represent. We continue to call for this contract to be cancelled. But if the committee does proceed with its efforts, we urge it to consider that the ME patient population demand and deserve a strong definition of their disease that separates their disease from "idiopathic chronic fatigue", and if the committee does eventually decide to accept the continuation of the reprehensible concept of a "wastebasket" fatigue-based definition for those whose illnesses the medical community cannot explain or cannot be bothered to test for adequately, then the committee must at least somehow distinguish the disease known as "ME" as a separate entity, and end the consignment of this long-suffering and chronically ill population to that wastebasket.
  3. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Why do they suddenly care now when they never, ever showed signs of caring before?

    The fact is medicine is largely based on a negative concept. To disprove theories and not to prove them. They don't want to help us.

    Anyway I think your points are good but I probably need to do more research on this. Thank you for going to the convention rising Phoenix. Take videos of what they are saying.
    Last edited: Jan 8, 2014
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  4. Firestormm

    Firestormm Senior Member

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    Is it not the question being asked that we should be addressing, and not the validity of the IOM being appointed? I am a little confused. The question in bold in your first post @Mark presumably purports to the review of literature/redefinition and possible renaming of the disease(s)?

    Could you try and explain please what it means:

    “What is the most important aspect or information that this committee should consider throughout the course of the study?”

    If so should we spend most of our allotted time - 5-7 minutes - arguing against the IOM itself, or would this time be better served arguing for the CCC and/or other definitions, as well as PEM/PENE, CPET, testing, alternate names and published science/current studies etc.? Personally, I would prefer to raise these matters.

    These public meetings are - I understand - few and far between. We may not get another chance to raise the points in this way. When is your deadline for this thread Mark? And I'll try and come up with some more specific points.

    Do we have someone able to make the presentation?

    Thanks.
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  5. slayadragon

    slayadragon Senior Member

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    Hi Mark. Pandora created a survey to try to answer the question that you also are posing, and I wrote the following comments to them. Perhaps they will be helpful to you. Good luck.

    *

    I don't feel like the survey allows me to express my view on the topics that it discusses, and so I am going to write some comments here.

    As the "CFS" definition stands now, it is as if the CDC still recognized a disease that was called "Memory Problems," encompassing people with severe Alzheimer's, early-stage Alzheimer's, other types of dementia (such as what people experience as a result of strokes), and mild idiopathic issues (such as people not remembering where they put their car keys).

    If all previous research had been done on all of these people, with no research done on just the people with severe Alzheimer's, then there would be no way to separate out who should be classified together and who should not. It would be one big mess.

    If the reason that people are interested in "Memory Problems" at all is because they see people with severe Alzheimer's and don't want to get it, then the only way to sort out the mess is to study those people who are severely ill with the disease (the first group), to determine whether biomarkers or other testing can be found to correctly identify not only the people who already are severely ill with those particular symptoms but also people who are at an earlier/milder stage of the same illness.

    Indeed, this is how Alzheimer's disease was researched. And it is why you can go to the doctor even with very mild memory problems and find out whether or not you actually do have Alzheimer's: because the research that was done on severely ill patients allowed this to happen.

    As long as the government is still using a broad research definition for ME/CFS, that is never going to happen for this disease. It's going to remain a mess.

    We need to be looking at the severely ill patients, to learn as much as we can about them (just as research was done on the severely ill patients in Alzheimer's, to find out as much as possible about them). Only by doing that will we learn who else is "in" (should be properly considered to have the same disease) and who else is "out" (should be properly considered to have a different disease).

    Obviously, IOM is supposed to be creating a clinical definition, and it is very difficult to create a good clinical definition when the understanding of the illness has been hampered so much by research of such poorly defined populations. So there really is not enough information to know what the right answers to any of your questions should be. It is all based on speculation and opinion, rather than medical science. And since I don't know what the proper answers are, I cannot bring myself to complete the survey. Since the IOM panel members will not know what the answers are either, they should not be creating a definition based on that non-knowledge.

    As many of us (197 in the last letter; 50 experts and 171 advocates in previous letters; more than 3000 people signing a petition) have stated repeatedly, the solution to this problem is for the IOM to dismantle its efforts to adopt a new definition and for the government to adopt the CCC as the current definition for the disease. If this occurs, then the main question would become whether people who do not meet the criteria have the same disease as the people who do meet the criteria (but perhaps are at an earlier/milder stage) -- which indeed is where the focus should be since that is the only way that we are going to be able to structure things in a way that will carry us into the future in any way that makes any sort of sense or that will get us anywhere that we want to go.

    The CCC defines a discrete disease entity that (considering the lack of good research into this discrete population) is the best that we are going to do at this point in terms of putting together a clinical definition. The IOM is not going to do any better and (considering the fact that most of the people on the committee are non-experts who cannot use their own knowledge to augment the very poor research) likely will do much worse. Therefore, in terms of your suggestions to IOM, I suggest that you suggest that they recommend to the HHS that the CCC be adopted as the clinical definition for the disease for the present, until additional research into those meeting the CCC allows additional information to be gleaned that can be used to create a new definition through more standard means.

    Lisa Petrison, Ph.D.
    Executive Director
    Paradigm Change
    www.paradigmchange.me
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  6. SOC

    SOC Moderator and Senior Member

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    There is one really important thing the IOM Committee needs to get or we're all screwed....

    THIS ILLNESS IS NOT ABOUT FATIGUE, DAMMIT!

    :D
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  7. Nielk

    Nielk

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    Thank you Mark for starting this thread and giving us the opportunity to comment and for taking our opinions in consideration.
    It is also not about:

    depression
    deconditioning
    childhood abuse
    somatization
    personality disorder
    laziness
    malingering
    hypochondria
    unwellness
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  8. SOC

    SOC Moderator and Senior Member

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    Yeah, that too. :D
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  9. alex3619

    alex3619 Senior Member

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    Hmmmm, I will be thinking on this and probably writing several posts of ideas. One thing I should say though, a precautionary bit of advice, is that direct protest over the IOM may be shut down. I don't know what procedures they will use, but they might stop the talk, or they might say this doesn't address the question so talk about something else. I think its important to raise the issue, but be prepared to switch to another tactic, a fallback position. On the other hand if they shut it down they give us even more ammunition.
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  10. Sparrow

    Sparrow Senior Member

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    That this illness can get extremely severe, and that level of severity needs to be understood.

    That reports of muscles that temporarily won't function at all, or agony just from light or sound, or other severe symptoms are not exaggerated. It really does get that bad.

    That by nature, people confined to bed tend to overdo it, not underdo it. That patients with this illness are often struggling to be too active, and that too much activity sometimes has profound negative and sometimes lasting consequences to our condition. That exercise is a topic that needs to be approached with extreme caution, because so many physicians will not instinctively realize how truly harmful activity can be for us.

    That triggering crashes seem to be absolutely the worst thing we can do to our recovery.

    That the short list of symptoms that tends to get listed for "CFS" does not portray the illness fully enough that patients would recognize themselves in it (I know I didn't).

    That 'fatigue' as it relates to this illness means so very many different things - from being too exhausted to keep your eyes open, to lacking the strength to turn on a lamp, to being unable to get to the bathroom under one's own power. And that fatigue is only one tiny symptom of the illness, and often not the one that keeps us most disabled. PEM keeps me disabled, because it removes the option to push through my symptoms. The more I push, the more severely limited I become, until I'm literally unable to care for myself in even the most basic ways.

    That non-disabling fatigue without our other hallmark symptoms may or may not be part of the same spectrum of illness, but that those of us severely affected are by far the most in need of a good definition, treatment, etc., so if there is doubt about whether or not a group belongs under this umbrella, leave them out until you have more reason to know they belong under there. Start with a core of the most severely affected, and work out from there.
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  11. Sparrow

    Sparrow Senior Member

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    Do you think you could tell them the things about the illness first, and the protests/questions about the contract itself after? I worry that they may shut down and stop listening if we lead the other way around. Whether or not the contract continues, or however it plays out, the more times we can get information out there about the true nature and severity of this illness, the better. You never know who might hear your 5-7 minutes and have their perspective changed just a little.
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  12. Wally

    Wally Senior Member

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    They are watching and reading right now. :cautious: Go ahead and express yourself. ;)
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  13. rosie26

    rosie26 Senior Member

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    :) been thinking that all day @Wally.

    And we are watching them all around the World
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  14. Wally

    Wally Senior Member

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    Conservatively, there are 17 million people around the world who could be watching - 34 million eyes and ears. We are a patient population with someone awake and watching 24 hours a day. Be careful what you ask for if you are not sincere in wanting to know our truth.

    @Mark - What specifically did the IOM ask PR to present at this meeting?
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  15. Wally

    Wally Senior Member

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    I have personally contacted the IOM and expressed my interest in attending the public session of this meeting. :zippit:

    They have all my contact information, but I have not received a personal invitation to make a presentation at this meeting. :rolleyes:

    I can't even get an answer to when I can stand in line to apply for admission to this performance. :grumpy:

    Guess I will just need to keep holding my breath. :ill:
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  16. daisybell

    daisybell Senior Member

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    IMHO I think that the most important thing they need to consider at every step of the process is that the diagnostic criteria to date (CCC aside) have been so broad as to make the research evidence largely useless for advancing understanding of ME. Before anything, they need to listen with openness to our concerns and accept our expertise around our symptoms. The Canadian consensus criteria may not be perfect, but they are where they should focus.
    Using most of the research out there from the last 20 years is only going to cloud the picture. Only research that has focused on people who meet the criteria for ME (CCC) should be taken into account.

    I also think that they need to acknowledge the huge damage that has been done to people affected by ME by the denial and psychosomatic labels we are still being given.
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  17. Persimmon

    Persimmon Senior Member

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    I suggest being very focused - a simple message that's easy to remember after hearing hours of testimony.

    Point 1. - Imperative to differentiate those with CCC or ICC defined illness

    Point 2. - Imperative to base the case definition of this illness upon biomedical testing rather than symptoms alone:
    * 2-day exercise test
    * tilt table test
    * NK cell cytotoxicity

    Thanks, Mark, for the chance to offer suggestions
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  18. Kina

    Kina Moderation Team Lead

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    The problem with the IOM asking this question is that they seem to be ignoring both the patient community and the experts and forging ahead with their agenda. What about the petitions?

    In the letter, they stated "We recognize that many people are interested in this study and would like to provide input or share their concerns, so we plan to provide multiple avenues for participation."

    So if they recognize that people want to share their concerns, a concern that should be included would seem to be "before we can answer the question you posed to us, we would like to know..."

    Five - seven minutes is not a lot of time. IMO, a short statement is warranted re: the harm to the community. To not say anything is like telling them we give our support to all of this. We don't. We should say so. We can't go into a lot of detail of what we want so I think some kind of list with what the patient community wants might be in order. As mentioned by Persimmon -- a focused list with what is imperative.

    We can use presentation slides so maybe one slide with all the important points left up the whole 5-7 minutes with the major points of what we want would be best. I don't know. I am just thinking aloud here.

    I do think it's imperative that we voice all of our concerns.

    As a reminder the IOM's 'Statement of Task' is --

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  19. Rand56

    Rand56 Senior Member

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    If you haven't done so already, I'd ask to see if you can have more than 5 - 7 minutes. They could say no but you won't know that until you ask.
    Last edited: Jan 9, 2014
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  20. taniaaust1

    taniaaust1 Senior Member

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    Im very worried aobut that too, this meeting could be the only one we have to try to get throu to people on that panel who arent familar with this illness on how we'd like them to procede going about it and I hate to see our time wasted (when there is a possibility it could still end up going ahead). (remember this is to the IOM panel and not the dept who has contracted them.. the fight to stop IOM needs to not be with IOM but those who are contracting IOM or higher up).

    I personally dont think this meeting when we only have minutes to get across what is important to be done if this has to go ahead, is the right place to try to fight the IOM situation. Thou certainly I do want our protest to it mentioned FIRST UP aknowleding and making it clear that we are against the IOM process but I dont think it should take up less then 1min of the time being given ...it probably could be stated in less then 30 seconds (no need to go into names of those opposed as Im sure they know that already) . I'd like to see less then a minute of the time used to push that this whole thing shouldnt even be happening and that we want the CCC which was done by experts to be used.

    I think a quick statement too, that we think only experts in the disease should be defining it as its such a complex disease should be said too. (anyway.. my opinion is please dont use too much of the time up to fight IOM in this manner as we may be needing this time).

    Also please do say "the community do not trust this process at all and do not recognize this committee as legitimate." as I think that is important to go down into the records for something said during this. (this will help end up making them look ridiculous for going ahead if there is a bad outcome and it isnt accepted by the patient group).

    Can the above things be said in only 30-40 seconds? I see that we need to say these things for the matter of public record.

    “What is the most important aspect or information that this committee should consider throughout the course of the study?”
    The most important thing for them to consider (if they are going to ignore our experts and the CCC) is to actually consider and act on that CF, CFS and ME are all separate things (and this is the main thing I personally believe its the most important thing for PR to push at this meeting. If they are separate things..how should this panel be acting?). They should not during this process (if it HAS to go ahead which none of us want as there is already the CCC done by ALL EXPERTS!) lump studies using different definitions to try to come up with consensus outcomes.

    Make them aware that ME patients have often been prevented in participing in CFS studies not only just due to that this patient group is often sicker, but also many CFS studies have ruled out ME people from being in these studies, due to ruling out those who have certain abnormalities which are in ME!!! (sorry Mark I cant think of a good example but know there are a couple of very good examples of this out there in which ME people would of been excluded due to the exclusion things mentioned). It would be great if they say they cant define ME cause not enough research on it. They need to be aware that there is a real lack of research and hence only experts can define ME.

    Any studies which used CCC or the international ME definition (if there is any of those yet) should NOT be mixed with the other studies but need to viewed separately .. CCC studies put with CCC studies. Each group according to definition, needs to be viewed separately

    They need to pay in mind too that there has been extreme biased with ME not being focused on in research. They also need to be pay in mind that many of the CFS studies have been misrespresented so they cant just read a study or summary but also need to be checking the experts and patients responses to the studies to realise the study flaws.
    ...............

    Id actually if they have to do a new definition for ME.. I'd like to see it based on test abnormalities instead of subjective symptoms (as of cause if it was based on test abnormalities of cause no one could dispute). Maybe having any of the testable abnormalities could rule someone out from being given a CFS diagnoses.

    Many illnesses for diagnoses are diagnosed bypeople having a set number of abnormalities out of a group listed. So why cant that be done for us? There are many abnormallies known in ME.. how about an ME test abnormality list (there was a page long list of abnormalities in the CCC book) and say like 2-3 out of it along with certain subjective symptoms are needed for a diagnosis. This would stop the issue of their being no testing for ME!! (and would encourage testing to be done).

    If the tests arent common ones.. well the gov and health system needs to make them common if they are needed for diagnosing us (I bet many other tests werent at all common until it was realised they were needed to help diagnose a disease).


    I think we need to push that we just want a diagnoses based on just subjective findings. (if they want a diagnoses better then the international ME one.. that is what they need to do to do this. That was the one area I felt let down with the international ME definition.. they werent basing diagnoses on objective findings).
    Last edited: Jan 9, 2014
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