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9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
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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. taniaaust1

    taniaaust1 Senior Member

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    Mark and Kina.. I think you both have done an excellent job getting that all together.

    I myself agree with everything there said there. (the only issue I had with it was the same as Nielk and some others would too which Ive already commented on). Anyway.. just wanted to say I think you both have done a great job at getting together the points important to the community (no easy feat)
  2. taniaaust1

    taniaaust1 Senior Member

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    "a charge to the panel to recognize that many in the community will not be participating in this process and they oppose the contract because they believe that any definition should be determined by ME/CFS experts,"

    Very glad to see that you will be mentioning those who didnt partake in this process due to opposing it. I do think that is important to bring to IOM attention just how opposed many feel.

    ....

    Is there any certain kind of supporting material for that which you'd like us to try to find? links for anything? Maybe give us some clues of how we could assist?
  3. taniaaust1

    taniaaust1 Senior Member

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    yeah.. I think we can almost be certain they wont bring out any definition based purely on biological abnormalities and nothing else (thou some of us wouldnt mind that). By making it a very strong point thou (its a good political point as Bob said), it would mean there are more likely chance that more importance could be placed on them then which is now which is no importance at all! Without some abnormalties being in the defintion...many doctors will never take us seriously. I see it as fairly essential if we want to get rid of those psych doctors thinking its all in our heads and having actual abnormalities in definition will give us creduality (hope I got that word right).

    It would also cause patients to be tested more for abnormalities if these are given importance in a defintion. For these reasons .. we need these to be given importance.

    I can understand thou that some who havent found any ME abnormalities, be it from not enough right tests being done or whatever may feel fearful about the above. (it could even turn out that those who dont have any of the ME abnormalities could end up finding out they have something else)..

    I do also think it should be made essential to do testing for ME abnormalities as there could even be subgroups of ME.. to be later found... most illnesses have different types of them eg diabetes, EDS, mastocytosis or whatever all have different types.. Looking at the actual abnormalities will end up being what will help lead to the answers to our illness and end up solving the mystery of it. How many doctors right now purposely look for ME abnormalities?? nearly nil except if they are a specialist. Getting abnormalities put into a defintion would really change that.

    (Im not just thinking of definitions but also what the definition could do for us).
    Last edited: Jan 22, 2014
  4. Firestormm

    Firestormm Senior Member

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    I am not going to critique the summary prepared by @Mark and @Kina and I do want to thank them both for doing this. It was never going to be an easy task given the deadline and all the other things they have to do every day for Phoenix Rising.

    I would though like to return to the question we were specifically asked to answer:

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

    That is what we were asked to comment on in the presentation, so I hope that if someone is willing to take on the challenge of presenting this to the Panel, the final presentation is tightly focused on trying to answer the question.

    Good luck to whomsoever volunteers. I have the greatest respect for anyone that does.
  5. Nielk

    Nielk

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    I think all the points being made can be summed up with something like;

    Please keep in mind that ME is a very serious, complex, biological disease needing a tight definition with mandatory symptoms such as PEM/PENE, neuro-immune dysfunction and other testable abnormalities.
    taniaaust1 likes this.
  6. A.B.

    A.B. Senior Member

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    CFS is a serious biological illness and biomedical research in this area has been severely underfunded considering the number of people affected.

    Edit 1: I have not personally verified the funding claim, I'm basing this on Dr. Klimas comments. Citing some recent numbers would give more credibility to the statement.

    Edit 2: Some funding statistics from the US NIH:
    In 2014, ME/CFS research is expected to receive $5 million funding. Since I don't have Excel installed, I cannot programmatically calculate the average, but I did manually calculate the average of the first 30 conditions, and it's $945 million. Yes, per condition. Maybe someone with Excel could process all the data? The question how much of this $5 million will go to biomedical research is also unclear. In any case, it's depressing.

    http://report.nih.gov/categorical_spending.aspx
    Last edited: Jan 22, 2014
  7. Nielk

    Nielk

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    @Mark stated

    There might be 8 or 9 thousand members on the site but, how many are active. In addition, how many really follow this IoM study closely?

    You have started this thread by asking members to opine about what Phoenix Rising should comment on at the IoM open meeting. How many people have taken the time to respond? I would venture to say less than the 65 who responded to my poll. Yet, you are preparing a presentation based on these posts. What about all the members who have not responded?

    I agree, support and am grateful that PR will represent us at the meeting, taking all our collective comments into account. I just don't understand why my poll can't have the same weight.
    taniaaust1 and Wally like this.
  8. Firestormm

    Firestormm Senior Member

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    When presenting surveys (or presenting the comments made on this thread) it is perfectly correct to state the number of those who voted, or who made comments. However I don't personally see anything wrong in simply saying that due to the timescales involved and the nature of this condition 'only' so many people were able to contribute comments out of a membership of X. So whilst the number of contributors (and votes in your Poll @Nielk (which I must admit I thought was for your own letter and not this presentation)), might appear 'unrepresentative', I think we might justify it on this occasion. But I am not especially happy to see the word 'most' or 'majority' in any statement. Stick to the numbers and resist the temptation to spin them. You might also say that we have published (I think) 3 articles about the IOM and note how many people expressed distate at the time it was announced etc. If we had the time...

    SO if referring specifically to the poll you might say that 90% of people who voted said.... in response to the question. The total number of votes was X.

    I just think you need to quantify the argument if possible. There are reasons perhaps why didn't did not comment here, or elsewhere, or indeed vote in that poll. To be fair we would need to consider all of them, and as has been said I think, is this issue really attracting only those who are in opposition to it given the way it has been promoted? But that's for another day and not especially relevant to this thread or the presentation.
    Last edited: Jan 22, 2014
    jspotila likes this.
  9. Purple

    Purple Bundle of purpliness

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    There is a short video which illustrates the funding here:
  10. Bob

    Bob

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    Like @Firestormm says, I think (for accuracy) it's fair to say "# per cent of those who voted... ..." etc.

    Perhaps it should have been more of an official poll, started by a staff member, but it's not major issue for me.
  11. Sparrow

    Sparrow Senior Member

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    I understand completely. Here is some of what I would say, trying to incorporate the comments made recently, in case any of it is useful.

    The population of severely ill and disabled ME patients should be separated out from the broad fatigue-based definitions, using a definition at least as 'strict' as the CCC or ICC.

    • Focus on creating something similar to the CCC. There is a reason that definition rings true to patients and experienced clinicians. 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 except in those too ill to undergo it), and neurological and immune dysfunction, as those are all key features of the illness we are describing.
    • Focus on a definition for ME, not other undefined fatiguing illnesses. Chronic Fatigue, CFS and ME are separate entities, and should be treated as such. These other illnesses with symptom overlap should be separated from ME and given their own definition in the future, if necessary. A true ME definition is essential as an outcome of this contract, and we will accept nothing less. Criteria may be used to identify ME patients, but testing for known common abnormalities should be a mandatory part of the diagnostic process.
    • Focus on the debilitating symptoms that patients experience. This is an illness about extreme muscle weakness, and drastic loss of stamina, and cognitive dysfunction, and viral symptomatology, among other things. Fatigue is only a tiny part of the overall picture of this illness. The illness we are talking about is not about fatigue. This illness is also not about depression, deconditioning, childhood abuse, somatization, anxiety, personality disorder, laziness, malingering, exaggeration, hypochondria, or unwellness.
    • Focus on a definition that is guided by the core of the most severely affected patients. Panelists need to understand how severe this illness can be. The illness we are talking about is a complex, serious, debilitating, multi system disease which leaves its patients disabled. There is a varied list of symptoms, but with definite symptoms commonalities between patients. Half of patients can't work and a quarter are left bedbound. The most severely affected can struggle with even the most basic movements. Panelists need to recognise the varying severities and the impact on patients' lives of the various disability levels.
    • Focus on science that fits the realities of the illness. We patently reject the suggestion 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. Numerous illnesses were believed to have a psychiatric basis before sufficient testing became available to understand them (Ulcers/H. pylori infection, Multiple Sclerosis, Diabetes, etc.). Attempts to give a psychiatric explanation for our illness have utterly failed to explain the realities of the condition, and are incompatible with the details of its progression. Research which describes a putative 'functional disorder' should be ignored and dismissed in relation to ME.
    Many patients are unable to be involved in this process because they are simply too ill to participate. Others have already passed away from complications of this illness, and we honour their struggles and their sacrifice. Many in the patient community have also chosen deliberately not to engage with this panel. A large number of Phoenix Rising members adamantly oppose the IOM contract and want the CCC adopted immediately.


    Those patients have seen a chronic lack of funding, support, and recognition from the government, and from the medical community as a whole. They find if difficult to trust that the criteria that come out of this process will be sincerely reflective of the illness we are living through. We urge you to rise up to that challenge.


    The complex realities of this illness make it extremely difficult to understand without extensive experience. We implore you to defer to the judgement of ME clinicians, patients, and caretakers on this panel when there are differences of opinion, and to regularly seek and pay close attention to input from the patient community.


    Five minutes is not nearly enough time to give the input that we want to on so complex a topic. Please ask us again, give us more opportunity for feedback, and keep on asking us throughout the process. Invite us for further discussions with the panel, later in the process. Trust our experience in living through the illness to help you in your task.


    Together, hopefully we can create something to help move us all forward.
    Valentijn, Ritto, lnester7 and 3 others like this.
  12. Nielk

    Nielk

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    You are correct in stating that I said i would use this poll for my personal written comment. I did not initiate this poll for PR's presentation.
    taniaaust1 likes this.
  13. outofstep

    outofstep

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    I don't know if this has already posted, but if not it's imperative that it's addressed. GWS has been redefined as "chronic multisystem illness" and the VA has decided that CFS (along with FM & IBS) is related to GWS. This is detailed on their page:
    http://www.publichealth.va.gov/exposures/gulfwar/medically-unexplained-illness.asp

    The writing is on the wall people. It seems pretty obvious that it is the IOM's intention is to redefine Fukuda CFS as "chronic multisystem illness" as well.
  14. Sparrow

    Sparrow Senior Member

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    I would guess their intent with GWS was to be inclusive. They didn't want to risk leaving out people who were ill and who might have the same illness as the one they were tasked with looking into. And I can understand where they were probably coming from with that, but it can quickly get hopelessly vague when you don't know where to draw the line. Given that few people on the GWS panel were familiar with the illness, I'm not surprised they had such trouble with it. I hope that they will be much more exclusionary with our process. That's why I want them focused on the most severely ill as a starting point. There is a large spectrum of illnesses that have symptoms that overlap with ours - ranging from chronic fatigue to CFS to "mild" ME to the most severely affected. I do not want an umbrella diagnosis that includes all of those together. And if there is uncertainty about where to draw the line, I hope that they will make sure that the sickest of us are represented, as they are the most vitally in need of help.

    Perhaps that is something we need to tell them more explicitly. Do not turn this into a vague "chronic multisystem illness" in your efforts to be inclusive. If there is uncertainty about where to draw the line on whether or not a group of patients has the same illness, err on the side of the most severely ill. They are the ones who are most in need of your efforts.
    SOC likes this.
  15. outofstep

    outofstep

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    The point needs to be made that GWS (and FM and IBS) is/are not synonymous with or interchangeable with CFS, that CFS is not "medically unexplained", and that there is a large body of CFS research where specific biomarkers have been found.
  16. Esther12

    Esther12 Senior Member

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    I've not really been bale to follow all this, but on a brief glance, it looked to me like Sparrow's post #191 was a move forward.

    Best of luck and sympathies (for the hard job) to all those involved in this. I'm still not sure what I think, never mind trying to find a way to present what everyone else thinks too!
    Izola likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    I personally do think its a good idea to put it as a percent.. People had the opportunity to respond. If anything.. the ones who look at the poll and are against the outcome.. are probably even more tempted to vote.

    As far as also telling the committee how many voted.. well it would cheapen it and would be probably very bad for our politics too as it will make it appear that not many at all have interest in the IOM stuff (rather then the lack of interest is rather cause most people arent well enough to follow what is going on so dont know, Im sure most people would have some view on it either way if they knew about IOM etc etc).

    I hope whoever puts the talk together wil consider things on a political level too. Saying that a very low level of people decided they wanted input in any of the IOM stuff.. looks kind of bad.

    If Nielks poll wasnt good enough due to some wording to get some idea of this sites opinions.. I wish someone had posted a suitable to everyone poll.
    Last edited: Jan 23, 2014
  18. taniaaust1

    taniaaust1 Senior Member

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    with my brain fog.. I actually thought Nielks poll was the offical one (I wonder how many others did too)
  19. lnester7

    lnester7 Seven

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    I love this just manor changes.
    Also I don't know hot to include the children here but we are not covering them.
    • Focus on creating something similar to the CCC. There is a reason that definition rings true to patients and experienced clinicians. 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 except in those too ill to undergo it), and neurological and immune dysfunction, as those are all key features of the illness we are describing.
    • Focus on a definition for ME, not other undefined fatiguing illnesses. Chronic Fatigue, CFS and ME are separate entities, and should be treated as such. These other illnesses with symptom overlap should be separated from ME and given their own definition in the future, if necessary. A true ME definition is essential as an outcome of this contract, and we will accept nothing less. Criteria may be used to identify ME patients, but testing for known common abnormalities should be a mandatory part of the diagnostic process.
    • Focus on the debilitating symptoms that patients experience. This is an illness about extreme muscle weakness, and drastic loss of stamina, and cognitive dysfunction, and viral symptomatology, among other things. Fatigue is only a tiny part of the overall picture of this illness. We are unable to produce the necesary energy on demand. The illness we are talking about is not about fatigue. This illness is also not about depression, deconditioning, childhood abuse, somatization, anxiety, personality disorder, laziness, malingering, exaggeration, hypochondria, or unwellness.
    • Focus on a definition that is guided by the core of the most severely affected patients. Panelists need to understand how severe this illness can be. The illness we are talking about is a complex, serious, debilitating, multi system disease ( I would list the systems, Autonomic, Inmune.....) which leaves its patients disabled. There is a varied list of symptoms, but with definite symptoms commonalities between patients. Half of patients can't work and a quarter are left bedbound. The most severely affected can struggle with even the most basic movements. Panelists need to recognise the varying severities and the impact on patients' lives of the various disability levels.
    • Focus on science that fits the realities of the illness. We patently reject the suggestion 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. Numerous illnesses were believed to have a psychiatric basis before sufficient testing became available to understand them (Ulcers/H. pylori infection, Multiple Sclerosis, Diabetes, etc.). Attempts to give a psychiatric explanation for our illness have utterly failed to explain the realities of the condition, and are incompatible with the details of its progression. Research which describes a putative 'functional disorder' should be ignored and dismissed in relation to ME.
    Many patients are unable to be involved in this process because they are simply too ill to participate. Others have already passed away from complications of this illness, and we honour their struggles and their sacrifice. Many in the patient community have also chosen deliberately not to engage with this panel. A large number of Phoenix Rising members adamantly oppose the IOM contract and want the CCC adopted immediately.


    Those patients have seen a chronic lack of funding, support, and recognition from the government, and from the medical community as a whole. They find if difficult to trust that the criteria that come out of this process will be sincerely reflective of the illness we are living through. We urge you to rise up to that challenge.


    The complex realities of this illness make it extremely difficult to understand without extensive experience. We implore you to defer to the judgement of ME clinicians, patients, and caretakers on this panel when there are differences of opinion, and to regularly seek and pay close attention to input from the patient community.


    Five minutes is not nearly enough time to give the input that we want to on so complex a topic. Please ask us again, give us more opportunity for feedback, and keep on asking us throughout the process. Invite us for further discussions with the panel, later in the process. Trust our experience in living through the illness to help you in your task.


    Together, hopefully we can create something to help move us all forward
    taniaaust1 likes this.
  20. Sparrow

    Sparrow Senior Member

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    In terms of specifically mentioning the children, what about if we changed that fourth point to something like this:

    Focus on a definition that is guided by the core of the most severely affected patients.
    Panelists need to understand how severe this illness can be. The illness we are talking about is a complex, serious, debilitating disease which leaves its patients disabled. There is a varied list of symptoms, but with definite symptoms commonalities between patients. It can strike people of varying ages. Half of patients can't work and a quarter are left bedbound. The most severely affected can struggle with even the most basic movements. Panelists need to help doctors to be aware of the varying severities, the additional needs of children with this illness, and the profound impact on patients' lives of the various disability levels.



    I think for the purposes of these IOM panel suggestions, we probably don't need to go into the plight of children with the illness in too much detail, because we thankfully have expert panelists who are aware and can educate the others. I think the important piece is to mention the issue so that it's clear that we want to see something about that in the document they produce.

    I'm not sure how to work in the specifics of the multiple systems affected, beyond that requirement for immune and neurological involvement in the first point. I like putting multisystem in there in theory, but I'm slightly hesitant to put emphasis on the word "multisystem" just because I know a lot of people in this thread seemed very concerned that they would try to put ME under the Chronic Multisystem Illness umbrella, and I don't want to feed that fire any.

    I like your sentence about not being able to produce energy on demand.

    ...I have to say that I'm not sure if this write-up is actually what they're planning to use for the presentation, though. I was just trying to help out as much as I was able, trying to incorporate the points people were making about the rough draft version. I'm not writing this stuff in any kind of official capacity. :)
    lnester7 likes this.

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