Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Yes vs No - respectful discussion

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Bob, Feb 19, 2015.

  1. Bob

    Bob

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    I'm attempting to constructively bridge divides here. I'd really like to try to understand our differences in this thread.
     
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  2. Bob

    Bob

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    In this thread, I'd like to call a truce between those who think the IOM recommendations are helpful and those who think they are harmful.
    There are strongly held beliefs on both sides of the debate, and all opinions are held for valid reasons.

    The position that we've been placed in, is unfair.
    We've been disenfranchised from the IOM process and many people are feeling deeply frustrated and resentful about this.

    Now we find ourselves in a situation whereby we feel that we either have to support the IOM recommendations in their entirety or to reject them outright.

    If we'd been part of the process then we could have had meaningful input into the recommendations instead of being reduced to deciding whether we are 'for' or 'against' a set of criteria that none of us are entirely happy with.

    And many of us are desperate to permanently get rid of Fukuda, and this places us in a difficult position if we're not entirely happy with the new criteria but we think they are a million times better than Fukuda.

    And, if we like the report but we don't like the criteria, what should we do? If we support the report, then does that give credence to the criteria? If we don't like the name then do we have to reject the criteria outright even if we think they are somewhat helpful? If we partially like the criteria, but would like it modified, then what do we do?

    This isn't our fault - it's the fault of the process - we've not been asked for input or feedback on an issue that is deeply personal to us, and an issue that we are intensely familiar with.

    Instead, decisions have been foisted upon us in a 'like it' or 'lump it' fashion.
    This means that many of us are feeling defensive and are being forced into making quick reactions, deciding either in favour or against before we're ready to.
    Or, at least, that's my perception of how some of us are reacting to the report, myself included.

    I've been defensive of the recommendations because I think it's the best we're going to get and because I want Fukuda CFS (aka chronic fatigue) to become obsolete. But I don't think the recommendations are wonderful, and I'm feeling quite bewildered by all the information that needs processing.
    Others are in a panic because they think this is the worst possible outcome. i.e. the new criteria are a facade of being ME, but are in reality chronic fatigue on steroids. They anticipate their illness being permanently lost from the medical literature, and subsumed into 'SEID', a set of criteria that they find ridiculous.

    We should never have been put in this situation where we all feel forced to turn on each other, desperately seeking the best outcomes from a process that we were excluded from.

    So perhaps we could use this thread to explore the issues respectfully and to ask questions of each other.

    For the thread to work, we've got to start from basics and not make assumptions about each others perspectives. Asking questions of each other, rather than challenging each other, is a good way to avoid confrontation.
     
    Last edited: Feb 19, 2015
  3. Wayne

    Wayne Senior Member

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    Thanks Bob. I've not been able to get close to the discussion so far because of the volatility involved. I very much appreciate reading your take on things from a place of relative equanimity. It allowed me to get the best understanding so far of what's all going on.

    Intense emotions, including those on online forums, are just too much for me to handle. I hope this thread leads to the kind of respectful dialogue you're envisioning. It's the only way I'll have a chance to understand more fully some of the fundamental issues involved. --- Thanks again!

    Wayne
     
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  4. CBS

    CBS Senior Member

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    Bob - Thanks from me as well. I've spent the last week+ in awe of the ways in which the comminuty seems to have fractured and asking why.

    I agree that the report was foisted on the community with no real opportunity for input. I've wonder if the split is across "net gain" vs. "net loss" or "more enfranchized" vs. "less enfranchised" by the report, creating a mentality of "if your not in my group, you're against my group."

    Stepping back to ask how we got into a situation where people we/they respect could be so completely blind to XY AND Z when just ten days ago we/they thought they/we were reasonable, caring and bright people seems like a good idea.
     
    Last edited: Feb 19, 2015
  5. Nielk

    Nielk

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    I agree with most of your statements @Bob.

    The IOM and/or the HHS have not officially solicited our (the patients') opinions. In addition, with their silence, HHS has created this void whereby the whole community is at a loss. This is extremely unfair and I would venture to say harmful to our health.

    For them to have pushed the IOM report out ahead of its time and rolled out in such a big media way, without a word from HHS, is really cruel.

    Are they just watching/reading all our comments on social media and enjoying the mess they have created? No one seems to know what the next step is. They are watching us fight and at the end, they will do what they want to do. They certainly have never before listened to our voice before. why should they start now?
     
  6. mango

    mango Senior Member

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    absolutely brilliant initiative bob, thank you so much! :)
     
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  7. SpecialK82

    SpecialK82 Ohio, USA

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    I think really we all like some things in the report and other things we don't. I don't think the sides that are forming are really all that far apart. It's just that we feel that it's better than status quo or not better than status quo, but I dare to say that probably many of us would change the exact same things if we could.
     
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  8. alex3619

    alex3619 Senior Member

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    To me this is at the core of the issues ... again, to emphasize, from my perspective. Whatever the outcome of the report, the process used was flawed, and for many more reasons than just the community being poorly consulted and even misinformed.

    I don't think we should either reject or accept the report. I think the report needs to be analyzed and dealt with accordingly. I think it needs studies to see what the impact would likely be. I think the report is a theoretical claim about the evidence, and we need it tested. I know this at first might sound hypocritical as I don't make the same strong claim about ICC or CCC, though I do think this also applies to them. However the IOM report is likely to be claimed to be evidence based. Theoretical analysis of evidence is not the same as having that theory tested, which is where EBM has to go to retain credibility. Maybe the pending CDC multisite study will provide more evidence.

    I think we should, and even must, still protest at the way this was done. It was a failure of process.
     
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  9. SpecialK82

    SpecialK82 Ohio, USA

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    I'm starting to believe the Lenny Jason's idea of the HHS now vetting the name/criteria amongst clinicians, researchers, and patients before "approving" these recommendations would be the best way to proceed.
     
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  10. Nielk

    Nielk

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    I believe that the expectations are very different. I think the some that are happy with it, feel that just the fact that we got rid of the word "fatigue" and that the criteria contain PEM is enough for them to tally around it.

    Many that oppose it want the historical Ramsay's ME like definition. They believe that this is the core of the disease and that anything that has been done to the names and criteria by the US government have been a construct to delineate from that. They feel that the US health agencies have not studies, recognized the many outbreaks of this disease. They do not discuss the infectious nature of it. They have waited decades for the US government to finally get it right and see this as a huge failure.
     
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  11. SpecialK82

    SpecialK82 Ohio, USA

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    I think a major problem for the IOM, that they admit, is that we just don't have the research studies that are needed to support the name ME for example, or probably that it is neurological, or immune, etc. The IOM themselves say that the research has to be done - they were completely surprised, I think, that they didn't have more research to draw from. They are hoping now after the report that good research will follow and that it be funded appropriately by the NIH.
     
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  12. barbc56

    barbc56 Senior Member

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    I don’t think it's an either/or situation. There are things I like, things I don't about the IOM report.

    While reading an unrelated article last week it brought up an interesting point that might (or not) apply to the IOM. While I was aware of this concept, I didn't realize it has a name. It's called the Perfect Solution fallacy. The following says it better than I can.

    While it could be debated if this was the best option available, I tend to think realistically it is.

    Change takes time and that is frustrating. Very, very frustrating. While we need to be ever vigilent about what is said, in my opinion, at this time, based on what I have read, I see more positives than negatives. But I am still in the process of wading through all the information, so will leave open the possibility of changing my mind.:)

    I am just posting this as something to keep in mind. Other points both pro or con have been discussed on other threads.

    Barb
     
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  13. halcyon

    halcyon Senior Member

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    Isn't this a logical fallacy though? Absence of evidence is not evidence of absence.
     
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  14. alex3619

    alex3619 Senior Member

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    When I look at various comments and views it seems to me this is perhaps largely about where people put emphasis. To me the name is not very important, but the definition of SEID is critical. In the four years since PACE we have continued investigating and our understanding continues to improve. I think this will be the same for the IOM report, and I am not implying its in the same league of bad as PACE. I am just saying its deep and complicated and our initial reactions may not be justified in the long view.

    There is no substitute for analyzing the report, good and bad and why bother.

    The term CFS is a big problem for us, but a new name will not change much. Yet there is symbolic gain in getting away from CFS.

    A huge issue is medical education, and changing outdated medical views on these issues. Doctors are typically profoundly unaware of how much the science has advanced. If the IOM/HHS/whoever makes big changes in medical education that is grounded in the science then its a net positive gain.

    I think a big issue is that many are still unaware of how much the IOM process defined the outcome. The process itself is flawed, and this puts limitations on the report. Its an almost inevitable outcome. Yet its not the end of the story either. In time we we have our say, as will our experts and other interested parties.

    One thing I do want to say, and this might be premature as I have nowhere near done with the report, is that given the flaws in how this was done its a remarkably good effort. Just because the process is flawed does not mean that knowledgeable individuals cannot mold it into something a little better. It could have been much worse.

    I agree with what Nancy Klimas said over a year ago ... this report was premature. The science is not advanced enough yet.

    What some people are responding to is that some issue with the report is a major concern for them, and it taints the whole report. Others see it as a mixed bag. Others like it overall. So the perspective will vary.

    Yet others have realized this report gave us what we asked for, at least superficially: a new name, and a definition based on PEM. We got what we asked for, and now many of us don't like it. Yet we do have good grounds for distrusting change that is forced upon us. In the past this has usually been detrimental. We also have yet to properly investigate the consequences of the report, and this is not helped by the fact that some of the ancillary material, including a doctors guide, is not released yet.

    A more transparent and consultative approach, in less rush to move forward, with a real effort to engage patients, would have been better. I think we do feel disempowered, and we have experienced far too much of that.

    The reality however is the report exists, the political and agency moves to use it will advance, and we need to adjust to that and not continue to be locked into old views. Things are changing, and how we respond needs to change with them. Yet what does that mean? What are the next steps? Where do we fight, and where do we cheer? We are in a confused period of our understanding, and I think opposing views are to be expected. Indeed, while I do not like to see personal attacks I am not sure that opposing views are a bad thing. To get a good understanding in the long run we need to examine all sides. Important issues are being raised by people both for and against the report. We need perspective, and that takes time.
     
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  15. alex3619

    alex3619 Senior Member

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    Yes, its a fallacy embedded in evidence based processes. Its why, in part, EBM is not science.
     
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  16. SpecialK82

    SpecialK82 Ohio, USA

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    Very good to keep in mind, The Perfect Solution Fallacy, thanks @barbc56 for posting. I think this IOM report can be a stepping stone...
     
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  17. Bob

    Bob

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    If I've unwittingly said anything unhelpful or inflammatory then please let me know, and I'll edit my post. My aim is to include everyone in this thread, not alienate anyone.
     
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  18. Wally

    Wally Senior Member

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    @Bob and others you have commented so far on this thread, I was hoping that people would see that ultimately it is the HHS's actions or inactions surrounding this Report that is the main contributor to the discord that we are watching unfold.
    I tried to articulate my concerns through the posting I did on another IOM Report thread (yikes there are so many). I have also drafted a letter to Secretary Burwell (and cc'd many others) in an attempt to get someone within the government to kick the can back to the center where this firestorm was first created.

    My posting, which I believe is relevant to the discussion on this thread is posted here (under Reply/Post No. 116) - http://forums.phoenixrising.me/inde...n-of-full-iom-report.35528/page-6#post-560945
     
    Last edited: Feb 19, 2015
  19. SpecialK82

    SpecialK82 Ohio, USA

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    I don't think so. I think the IOM was merely stating what it absolutely knew to be true of the evidence, which is mainly exertional intolerance (PEM). Because ME (inflammation of the brain and spinal cord) is not included in the name does not mean that it's not there, only that we don't know if it's there based on the evidence.
     
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  20. barbc56

    barbc56 Senior Member

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    For some reason, I can't edit. Looks like while I was trying to do this my reply came after someone mentioned my post. Either that or @SpecialK82 is psychic. ( insert smiley emoticom). Now I cant do this.
     

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