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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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IOM List of Provisional Committee Members has been posted 3 Dec 2013

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Denise, Dec 3, 2013.

  1. Nielk

    Nielk

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    E-mailfFrom PANDORA -

    Dear ME/CFS advocates and experts,
    Since the first public announcement in August that the U.S. Office of Women’s Health intended to contract with the Institute of Medicine to develop a consensus on a clinical disease definition, many confusing events have occurred. I want to let you know that I have the same fears expressed by many patients and experts. I also respect everyone’s efforts regarding the IoM, including the Stop the IoM campaign. All of us want the same outcome. We all want patients to have access to quality medical care and be treated with respect and dignity. You are very valuable to me, and I want nothing but the best for all of us.

    My belief is that in order to work effectively, this issue has to be worked from many different angles. So, through all the developments, I worked to find out specifics, got experienced advice, kept our board informed, weighed all the options and looked for solutions that will improve physician understanding of ME/CFS and improve patient access to knowledgeable healthcare. I also believed it was important to keep you informed of our decisions and actions along the way.

    At this time, the IoM study is moving forward with the first committee meeting possibly being in January. The IoM has selected intended committee members for the study and started gathering information and research papers for the committee to consider.

    Given previous IoM study reports on Gulf War illnesses, we understand there's a possibility that the ME/CFS IoM study results will not produce a definition for the disease that is best for patients if patient advocates and illness experts are not proactively involved in the process. But there is also the possibility that the ME/CFS definition result will be favorable, especially if patient advocates and illness experts are part of the process. This is seen in the IoM's clinical guidelines report on epilepsy. If we can get the same positive results from the IoM has happened with epilepsy, it will be a game-changer for our disease.

    The different results in IoM's study on epilepsy and studies on Gulf War illnesses show the chances of a better definition for ME/CFS will only happen if the patient perspective is considered, the best research is included, ME/CFS expert experience is considered, and ME/CFS experts and open-minded medical profesionals are on the committee. So, we are going to stay in front of the IoM and make sure they get it right.

    Toward that goal, about 17 people have decided to work together to coordinate efforts at influencing the IoM. Some are independent advocates, and some are part of other patient organizations. Some have participated in the "Stop the IoM contract" advocacy, while others have not. What we all recognize is that the stakes are too high for us to ignore that the IoM is moving forward on what will surely have a huge impact on patients.

    This initiative is called "Get it Right." Because the IoM study will be 18 months, we expect this collaboration of experts and advocates to continue during that whole time. The group is networking and assisting in each other's efforts to not duplicate work or miss important opportunities. The individual or organization that takes the lead on a certain project has control of that project; so consensus is not required. We simply are sharing our talents and the workload.

    The first task is to find out information about the selected committee members to the community can give informed comments to the IoM about these individuals before they are finally appointed. We are glad to see that five of the intended committee members are ones we nominated. Keep an eye out for an Occupy CFSreport on information about the selected committee members after they are researched.

    If you would like to join myself and the other patient advocates in a way that is proactive, spreads the work load and avoids duplication — whether you are a patient, part of another organization or an ME/CFS expert — please let me know by emailing me at lorikroger@pandoraorg.net.

    Most kindly,
    [​IMG]

    President and CEO

    [​IMG]
  2. alex3619

    alex3619 Senior Member

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  3. barbc56

    barbc56 Senior Member

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    Though I haven't always agreed with Cort, from the beginning, I have found his take on the IOM, spot on.

    While we can't stop being vigilant about what is going on, I think we need to give this process a chance. It's been a given this contract would not be rescinded and I would have never imagined we would get a panel even close to being this fair.
    usedtobeperkytina likes this.
  4. alex3619

    alex3619 Senior Member

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    The most basic trick in stacking a panel's determination is not stacking the panel members, its stacking what is either in or out as evidence, and in this case how it is done. When a government wants a rubber stamp they set up a review panel, then select terms of reference that will rule out everything that may be a problem. Further if a contract specifies specific procedures, then dissenters within the panel have limited options to dissent.

    We haven't seen the contract.

    We have seen the results of other similar processes.

    There is considerable cause for concern. This does not mean the panel wont do a good job, this is about risk assessment. The list of bad versus good decisions like this one, in respect of ME or similar diseases such as GWI, is many to zero. Its not a good batting average to be confident about. Will there be enough experts to turn the tide? I don't know.
    Nielk, WillowJ and aimossy like this.
  5. barbc56

    barbc56 Senior Member

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    This is putting the IOM in a no win situation. However, the committee is set up, there will be criticism. We need to make the best of this particular situation. I think it has the possibility of having some positive results. No guarantees, of course, so that is why we need to be vigilant. The reality is that this panel will not change.

    Once we see the contract, and we do need to see it, then we deal with that. But, IMHO, these conspiracy theories do not make us look credible I think we should be workingthe issue of seeing the contract as that is, IMHO, more productive.
    Last edited: Dec 4, 2013
    usedtobeperkytina likes this.
  6. alex3619

    alex3619 Senior Member

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    Actually the IOM could have been set up with minimal criticism. The HHS and IOM chose otherwise. They could have consulted with CFSAC and the patient community, and been transparent about what they were doing. They could have, and still could, release the contract. My understanding is they have a legal obligation to do so, though I could be wrong.

    The IOM is in a no win situation, unless they somehow get an outcome that is acceptable for all. That is what happens when you visibly act without transparency or accountability to the stakeholders. They could have chose another path, CFSAC provided the perfect opportunity, and yet again HHS failed.

    If it goes down the path we expect, the IOM may also be severely discredited. We are on the verge of having several biomarkers that may make the entire process moot. While I have no great faith in the CDC research definition study due to its serious glaring flaw, even that could show the IOM up.

    The IOM failed once with GWS, its up to them, not us, to demonstrate they can do this, or it will be a straight fail for the IOM.

    If this goes as expected I think we should be sending the President a widely signed letter of No Confidence in the IOM.
    Last edited: Dec 4, 2013
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  7. barbc56

    barbc56 Senior Member

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    I guess we just disagee on this.:)
  8. alex3619

    alex3619 Senior Member

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    Disagreement is healthy. I am happy to disagree. :) If everyone agreed with everything it would be more worrying.
    Nielk likes this.
  9. Esther12

    Esther12 Senior Member

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    I disagree.
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  10. alex3619

    alex3619 Senior Member

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  11. Firestormm

    Firestormm Senior Member

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    Well, well, well, well, well. Makes me wonder what all the fuss was about ;)

    Looks like a good panel to me - best you could hope for. I wonder - as Cort does - why Peterson isn't yet on there as he was the one who originated (I think) the opposition experts letter, but I see 3 (?) of those who signed the letter are on the panel and are presumably willing to give it their best.

    Good. What's the next step in the process?

    Cort's blog here.
  12. aimossy

    aimossy Senior Member

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    who on the panel is possibly dodgey for us, only the psychiatrist?
    I take it advocates will be going over this with a fine tooth comb and submitting something.
    I am so shocked only one psychiatrist..........there must be other concerning ones.:)
  13. alex3619

    alex3619 Senior Member

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    Two, not one, though the other is mental health related.
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  14. barbc56

    barbc56 Senior Member

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    Ah, we are stronger than one psychiatrist, as long as there aren't more than one and they don"t come from England. No offense to England, just the, well you can guess who the said offense is directed.:whistle:

    Btw, I would like to go on record before this prestigious forum, that while I disagree with Alex on this particular issue, I think I might also disagree with Esther's disagree but that would depend on whether Esther's disagree is a general disagree or a particular issue disagree, as my disagree would depend on that.

    If this doesn't make sense, then I will have to disagree. :woot:
  15. barbc56

    barbc56 Senior Member

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    TWO!!:eek:

    Now I have to disagree with my previous statement.
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  16. Snow Leopard

    Snow Leopard Senior Member

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    Any treatment can be found to be effective on questionnaires if you don't require double blinding and you convince the patients that they are improving while undergoing treatment. This can easily be demonstrated with the thousands of non-blinded pharmacological trials that demonstrated evidence for many different diseases only to be found ineffective in blinded trials.

    You can double check by measuring whether function as returned to normal (actigraphy etc). So far this evidence has either not been done, not been presented, or is negative, suggesting the GET/CBT results are biased.

    What worries me is why this double standard of effectiveness is not examined critically at all.
    beaker, Iquitos and WillowJ like this.
  17. Hope123

    Hope123 Senior Member

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    Some comments:

    1) Even though the US government pays for the contract, IOM members are charged to make decisions based on their own beliefs and are not suppose to represent the groups they are members of, government or not.

    2) Committee members may dissent publicly if they disagree with what the majority says.

    3) Remember that the point of the committee is to concentrate on a clinical case definition. So although CBT/GET may be mentioned or discussed in relation to a definition, that is not the crux of what the committee is charged with assessing.

    4) Most of the rules for "evidence" have to do with decisions regarding treatment. The "rules" regarding construction of a case definition are not as well-defined but may include issues like validity (and the different types of validity), gold standards (if any exist), reliability, reproducibility,etc. It's a slightly different construct.

    Here is an example of a case definition being validated for a different illness, leptospirosis. The advantage here is they have a gold standard test that confirms the diagnosis for certain.

    http://www.ncbi.nlm.nih.gov/pubmed/22231248

    Another example with the "gold standard" being agreement on the diagnosis by experienced cllinicians:

    http://cid.oxfordjournals.org/content/42/11/1639.long
    usedtobeperkytina likes this.
  18. user9876

    user9876 Senior Member

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    What I don't get is how they expect to come up with any better diagnostic guidelines that already exist. Given the state of knowledge i.e. lack of understanding of disease mechanism anything that they come up with will be purely based on personal views of how symptoms cluster and what may or may no be significant. I don't see how there can be any scientific basis for it. Given that it just seems like a waste of money.

    Even with good experts I can't see how this contract will provide value.

    If I were the IoM the one area I would thing worth exploring is the idea of exclusions. There have been several papers pointing out that the diagnostic accuracy is very poor (around 50%) hence I think rather than a diagnostic framework based on random symptom classifications why not look at a diagnostic framework based on exclusions. I.e. help doctors to know what else to look for and what symptoms suggest what other tests should be carried out. This brings a whole area around looking at clinical decision making (that is researching how doctors make decisions and hence how to give diagnostic guidelines that will improve decision making) and I suspect that there is very little research here. I know I looked for papers on decision making under uncertainty and risk a few years ago and there was very little work done.

    I also think that any diagnostic guidelines may age badly over the next couple of years as the Rituximab trials progress. The interesting thing here is that if they are successful then then suggest a mechanism and hence the potential for better characterization and testing etc.
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  19. Firestormm

    Firestormm Senior Member

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    Well the only 'official' clinical definition in use in the USA (and that has widely influened other countries including the UK), is Fukuda. And that wasn't arrived at in a way that might be said to be similar to the IOM method. Indeed, and from a dodgy memory, it just arrived and has been in place for many a long year. How often have people complained about Fukuda? I do find it strange that nobody on these threads has reviewed Fukuda - which the panel are surely to do - and considered what about it is crap and what about it is likely to change.

    I think as you say, @user9876 they will need to consider exclusions and exclusionary testing i.e. things that should be looked for before a diagnosis of ME is given and co-morbidities such as POTS and apnea perhaps; they wont be looking at treatment - so you may think you got off lightly there I suppose (personally I think it would have served a better purpose had they been charged with producing a full clinical guideline and not just a clinical criteria - but there we go), but at the end of the day - they don't have a great deal to consider really do they?

    I expect much of the work will be in reviewing other criteria and assessing them (validating them as has been said) against each other. Things I expect might change are that the 6 month wait for a diagnosis will be reduced - in line probably with NICE but perhaps to even less that 4 months for adults - do you have one for kids? (which always seemed an arbitrary number - though I don't think you can reduce it to zero (you need some time to pass to allow for the trigger to resolve itself along with the symptoms), and I think PEM will assume greater prominence (though it might not become a distinct necessity for a diagnosis). You'll also get a more formal recognition of the debilitating effects of the condition as well as the array of recognised triggers.

    And you might see a name change - to Myalgic Encephalopathy or at the very least a formal recognition and adoption of ME/CFS i.e. moving beyond Chronic Fatigue Syndrome.

    That's all I can think of this morning - am fighting the flu - but a revisiting of Fukuda on one of these threads might help folk to see what is wrong with what you have now as the 'official' criteria. You also have different doctors using different means of diagnosing of course - which can't help especially when HHS is clearly aiming to standardise the approach: and such an effort has been desired for some time. The mention of sub-grouping still intrigues me - I am not sure how such a thing can happen with no specific biomarker or test: maybe they mean by severity as we have in the UK perhaps: do you have such a thing in the US e.g. Very Severe, Severe, Moderate, Mild?

    Back to bed.
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  20. Iquitos

    Iquitos Senior Member

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    Cort is either extremely naive or just kissing up to the establishment, something he has a long history of doing.

    If you wonder what all the fuss was about, you just haven't been paying attention. Knowing what the IoM HAS DONE, as opposed to what propaganda they expertly put out there, is the answer to "what all the fuss IS about."
    oc100, justinreilly and beaker like this.

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