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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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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. Andrew

    Andrew Senior Member

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    I want them to recommend the CCC.
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  2. Sparrow

    Sparrow Senior Member

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    The CCC is a good start, and I absolutely commend everyone who worked so hard to put it together, but it isn't perfect. It has been around for more than ten years now, and it is certainly not accepted by doctors as a whole. Part of that is lack of a large body to endorse it, but part is the document itself. Doctors have objected to how long the document is, the way it is presented, and how difficult it is to use in practice. It is not successfully conveying how to recognize this illness in a way that they are actually able to "get", and if nobody will use it, it doesn't matter how good it is in theory. The experts who know this illness well don't need a diagnostic document. We need one that can be used by people who have very little experience with ME. There have also been some concerns that in practice it diagnoses some groups of people with ME when they really have other illnesses. That could be a huge problem for us when trying to move forward with research efforts, since it may foul up and confuse the results.

    I'm not bashing on the CCC. I think it's a great thing. But it also isn't perfect, so if they're set on creating a new definition anyway, we might as well see if we can refine the areas where it is weaker.

    I know that adopting the CCC would satisfy us. It would satisfy me too. But they're clearly not going to do that. So assuming that the committee members are going to attempt to do what they've been tasked with and create a new document, what features does the CCC have specifically that we would like that new document to have as well?
  3. Andrew

    Andrew Senior Member

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    Lupus is not easy to diagnose either. But that's not used as an excuse to cripple the diagnosis.

    All the HHS has to do is put it up on their sites and say "this is it." Then put in the same amount of effort they put into promoting exercise.
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  4. Nielk

    Nielk

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    In addition, theIACFS/ME published a user friendly guide if the CCC in their primer.

    I agree with Andrew. Complex, difficult to diagnose disease have complex diagnostic criteria. Lupus is actually very similar to ME in that it is mainly diagnosed with a set if symptoms and could manifest idifferently depending which body system is involved. Lupus patients are treated by Rheumatologist who have been trained in this disease, not general practitioners.

    ME needs to be taught in medical school so that the doctors treating us actually know what this disease is all about.
  5. Sparrow

    Sparrow Senior Member

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    All true, and I'm not disputing it in the least. I don't want you to misinterpret where I'm coming from on this.

    The chart in the primer was a good development. The primer itself was a really good document. I'm just saying that if the feedback we've received was that the text before the chart itself, etc. was too long for doctors to get that far, maybe we could rearrange things a little. How much they SHOULD be using it doesn't mean anything if they won't. I think it's a good document, but in any undertaking it pays to listen to feedback from the target audience, and modify where that can be done without being detrimental. Businesses use focus groups, authors have beta readers, video games have beta testers, etc., and they do that for a reason. We want to sell physicians knowledge about our illness as successfully as possible. That doesn't mean changing the definition so it isn't complex, but it might mean subtle changes in the presentation. If they're presented right, things can be very complex while still being easy to understand. I taught calculus, and trust me, it can be done. ;)

    I absolutely agree about doctor education. That is and has always been my biggest passion when it comes to advocacy. But it seems to me that this contract is perhaps the first step on that road. Doctors as a whole seem much more ready to accept something created by the Institute of Medicine than by a group of other physicians they know nothing about. They'll trust it significantly more.

    We want to be recognized as a legitimate illness, and we want more credibility attached to the condition and its symptoms. If this went the right way, it could do that for us. However much we may like or dislike them, IOM involvement lends legitimacy and credibility to the process. Anything we could do to help make the contract more likely to have a better outcome for us seems like a good thing in my book.

    Again, I'm not saying that I love the contract. I think it would probably be just fine if the CCC was adopted and hyped. But in practice, there are a lot of things standing in the way of that. So given what we have to work with, I would like to let the IOM know what we want from them, and what we will and will not accept.
  6. beaker

    beaker CFS/ME 1986

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    Nightwear , daywear. They are all the same to me for the last zillion years. : /
    It takes too much energy to change a couple times a day. Unless, of course, I have an appointment. Then I will wear something other than jammies.
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  7. Andrew

    Andrew Senior Member

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    Based on what some others said here, I'm going to change the letter I was going to send. It will not be the one I posted earlier. I think what I'll do is endorse the CCC and explain why it's so good. Then I'll add that if they can see fit to endorse it, the least they can do is recommend a study as I said.

    The thing is, I realize they can take what we suggest, twist it all over the place, and then claim it's what we requested. And then when we point out their misrepresentation, they will just say "we don't have to follow suggestions exactly." This is how the HHS distorted the CFSAC recommendation, and how they smooth talked their way around misrepresenting it. But the only other choice I see is to just lie down and let them roll over me.
  8. Firestormm

    Firestormm Guest

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    If I haven't mentioned it before - too many threads too little time - I would like the IOM to review and consider this document:

    Report to the Chief Medical Officer of an Independent Working Group 2002

    In essence this was the report that involved patients and 'experts' as well as representatives and carers, and fed into the NICE Guideline. Indeed, and in my opinion, much that is good within NICE stems directly from this report. Actually, the wording used in NICE is almost an exact replication of that used in the Report above.

    Danke

    @Sparrow You are I think asking the right questions and suggesting the right things. It would have been great if we could have done as you say, but I think it was asking too much really especially given the time-frame we are operating towards. A report perhaps like the one above, put together in the USA, with the aim of drawing a definition or Guideline would also have been good. A more critical appraisal of the CCC by patients as well as the other definitions, would have been good as well. But I think that in the time that is left we can only do so much and expect whoever gives this presentation to do so much as well.
  9. Firestormm

    Firestormm Guest

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    Can I nominate this blogpost from Lenny Jason be reviewed by the committe, it's about the name of our disease and why it should be changed from CFS as well as efforts to change the definition:

    Diseases can stigmatize 21 January 2014

    Extract:
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  10. Nielk

    Nielk

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    I like what Jason says here. He emphasizes that what we need is an 'empirical' definition.

    An empirical definition is a definition based on clinical observation of patients. This is the opposite of what IoM has been charged with. They have been tasked to do an evidenced based study on the literature out there. Half of the IoM panel has probably never seen an ME/CFS patient.

    In addition, he states that if the definition will not demand specific symptoms like PEM, cognitive dysfunction and sleep issues, labarotories will not find a homogenous group. This will (and has) resulted in the difficulty in finding consistent biological markers.



    This is exactly why the fight for a proper diagnostic definition is so crucial. If we are ever to progress in finding the cause(s) for this disease and eventually treatments for it, it has to be properly defined.

    Yes, the name is an issue and adds to the dismissal and demeaning of this disease, but any change in name without a better definition, will not get us out of this mess.
  11. Snowdrop

    Snowdrop Senior Member

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    What I want for Christmas PR to tell the IoM:

    There is no justification to consider somatoform anything, under any disingenuous guise.

    ME/cfs has a definite neurological component (PENE).

    ME/cfs has an autoimmune component

    At this point there is not enough research to be able to distinguish if the various expressions of ME/cfs as experienced by the patient community is one illness or as many surmise several. This contract is premature.
    SD

    Separate comment not for IoM: The fact that there is not enough data to properly address the issue to me is at the heart of why this process is useless. It is so unlikely that they can create a better outcome without further research even if they were to try and do so in the best of faith. So why are they trying?
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  12. Nielk

    Nielk

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    This abstract by Maes regarding the different definitions of 'the disease'.

    There seem to be three distinct entities; CF, CFS and ME.

    Which entity has the IoM been tasked to study and define. If they are being tasked to define CF - they will find CF. If the task is to define CFS - they will find CFS. If the task is to define ME - they will find ME.

    This is the problem with the IoM study. No matter what we say, they have to follow the SoW devised by the sponsors of the study. I can tell them that I suffer from ME until I am blue in the face, if their task is to define CFS, my ME symptoms are meaningless to the. I might as well speak of my Crohn's disease symptoms. That is not the disease that they have been tasked to define.
  13. Mark

    Mark Acting CEO

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    Unfortunately Adin will not now be able to deliver Phoenix Rising's presentation to the IOM, so we urgently need to find a replacement. We need somebody from the US, who is available this Thursday to take part in the IOM's trial run of the video meeting software, and available on Monday Jan 27th for the meeting itself. The presentation itself will essentially be a summary of comments that members have made on this thread, and I'll post my draft of that summary in a few moments. Whoever delivers the presentation will have a bit of an opportunity to include a few of their own thoughts in the presentation but it should essentially be a summary of the main points made by members on this thread.

    Would anyone interested and available to deliver the presentation please contact me by Conversation as soon as possible, and I'll reply tomorrow.

    EDIT:
    I forgot to mention that the presentation can be delivered via the web, it's not necessary to attend the meeting in person.
    Last edited: Jan 21, 2014
  14. leela

    leela Slow But Hopeful

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    @Mark, have you made a thread or a banner about this? I think this is important enough that it ought to be as visible as possible.
    Thank you for letting us know.
  15. Mark

    Mark Acting CEO

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    Kina and I have systematically reviewed all the posts made by members on this thread and distilled those comments down into the following key points, each of which have been made by several members (we've noted the post numbers in this thread along with each point). I think they all fall together into a consistent theme for the presentation, and I am very keen that our presentation should be representative of the feedback given by members here, so the following is my proposed outline for our presentation:

    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.
    • 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)
    • 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)
    • 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)
    • 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)
    • 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)
    In addition to the above points, there also seems to be a strong consensus that we should end with some kind of brief statement noting the serious and widespread concerns amongst the patient and expert community about the nature of the IOM contract process. My personal thoughts on this are that it might be best framed in terms of suggesting what the panel members should keep in mind as a consequence of patients' material concerns about the contract (the panelists didn't form the contract, and some opposed it, so asking them to stop it would be pointless, but highlighting specifically what the key concerns were can be relevant to their deliberations).

    For example: 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, and that this has already been done in the form of the CCC and ICC, and that therefore the panel should make extra effort to consider this viewpoint, try to consult as much as possible with the community and especially with the experts, and defer to their judgment in areas where they are uncertain and lacking the necessary experience to fully appreciate the complexity of the issues involved.

    A few other good points were also made on the thread which would be good to include somewhere in our presentation if possible:
    • Highlight the abysmal lack of research funding. (Alex 52)
    • Highlight that PEM affects cognitive as well as physical function. (snowdrop 33)
    • Separate out the pediatric definition. (Beaker 49)
    • The panelists should take Leonard Jason's papers into account - including his recent paper which suggests assessing symptoms by severity (Firestormm 30)
    I'd also like to suggest something like the following, in view of the difficulty that we and others have faced in preparing our presentation at such short notice:
    • Our presentation could emphasise (perhaps at the start) that a presentation lasting 5-7 minutes is nowhere near sufficient time for us to provide the feedback we want to provide. So perhaps one main point could be: 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.
    The above needs to be formed into a presentation (with powerpoint slides) by Thursday, so that those slides can appear in the printed materials for attendees. We should also submit supporting material, and I propose that we submit a list of all the links and resources suggested in this thread for panelists to read, including Bob's suggestion of pointing the panelists at films such as Voices from the Shadows, and urge the panelists that patients from Phoenix Rising implore them to be aware of these materials.

    This task has come at a very busy time for Phoenix Rising, and we were only notified on Dec 26th, so with this latest setback we're clearly running late and It's obviously going to be a challenge to get the presentation, supporting materials, and presenter ready within the next 24-36 hours or so. So if anybody is able to help out with this job, please contact me, and I'd ask anybody else with any other thoughts about the presentation to add to this thread to try to make them as sharp and specific as possible: precise text, references, quotes, images etc etc are all likely to be useful in preparing our presentation.

    Thanks,

    Mark
  16. Snowdrop

    Snowdrop Senior Member

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    Wow. Thank you Mark and Kina.
    A lot of work and well done.
    I support your community statement entirely and wholeheartedly.
    Especially like the part where you suggest they come back to us for more.
    SD
  17. leela

    leela Slow But Hopeful

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    The short notice is so typical of agencies that are trying to pull a number; and doubly rude given they know they are dealing with disabled people who also have limited financial and energetic resources for travel. I feel so irritated by this.
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  18. Mark

    Mark Acting CEO

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    Thanks, good idea Leela, I've done that now. :)
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  19. Nielk

    Nielk

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    Mark,

    You seem to have left out one major (in my opinion the most important) comment.

    The majority of Phoenix Rising members oppose the IoM contract and support the experts' letter calling for adopting the CCC.

    See poll - http://forums.phoenixrising.me/index.php?threads/poll-iom-study-for-or-against.27616/

    In addition the following comments on this thread called for us to voice this fact whether in the beginning or the end of the presentation. Some say it should be the major comment others say just spend a minute with it. Alex3619 says that this is needed if nothing else but a political statement.

    This was commented on by:

    Mark #2, slayadragon #5, sparrow 11, akrasia #26, alex3613 #31, Bob #42, Ecoclimber #44, Inester7 #45, beaker #49, kina #53, alex3619 #55, Ember #56, Ren #73, Nielk #76, hikinglo #84,
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  20. Mark

    Mark Acting CEO

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    I included that general point immediately after the main list of points; I worded it differently but obviously the wording needs to be worked on:
    I'm not sure it's strictly accurate to say that the majority of Phoenix Rising members oppose it - technically there are about 8 or 9 thousand members and only a minority of those have voted in your poll - but so long as the wording of what we say is accurate, I agree this point should be included.

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