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IOM's response to patients' concerns about panel selection

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Nov 12, 2013.

  1. Nielk

    Nielk

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    Many patients and advocates have been sending e-mails to the IOM expressing their concern regarding the selection of non-experts to the panel. Here is IOM's response to one of those e-mails:


    This letter speaks for itself. This is the mindset of the organization who will re-define ME/CFS.
    Izola, snowathlete and justinreilly like this.
  2. vamah

    vamah Senior Member

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    Ultimately, cars will be used both by people with and without any knowledge of how engines work, so the participation of both types of people is very important in the engine design process. :alien:
  3. Esther12

    Esther12 Senior Member

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    What a great argument. She certainly does understand our shared perspective!!
    Izola, leela and Nielk like this.
  4. Iquitos

    Iquitos Senior Member

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    Both surgeons and butchers will be using knives so participation of both butchers and surgeons is needed. We need their "shared perspective."

    Right!
    Izola, taniaaust1, beaker and 4 others like this.
  5. Ember

    Ember Senior Member

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    The uninformed should be involved too in curriculum development. They're the prime users of education, and their perspective would help to flatten the learning curve.
    Izola, taniaaust1, WillowJ and 7 others like this.
  6. Nielk

    Nielk

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    :lol::lol::lol::eek:
    Izola likes this.
  7. Snowdrop

    Snowdrop Senior Member

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    Why do they fear ME experts lack objectivity? That's a bit galling. Is there any precedent for this attitude?
    Izola likes this.
  8. Mark

    Mark Acting CEO

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    :rofl:
    Izola likes this.
  9. leela

    leela Slow But Hopeful

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    Extra points for totally evading the question of the CCC/ICC.
    If it's a crap definition, it most certainly will *not* be used by physicians/clinicians with experience in ME.!
    Izola, taniaaust1, beaker and 2 others like this.
  10. leela

    leela Slow But Hopeful

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    Ultimately, both geese and commercial airliners will use the airspace that determines air traffic control guidelines,
    so participation from both perspectives is very important.
    Izola, taniaaust1, greebo and 3 others like this.
  11. lnester7

    lnester7 Seven

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    WE NEED TO HIRE EXPERIENCED LAWYER!!!!!!

    I am willing to donate to break this contract and representation.
    Izola, taniaaust1 and Keela Too like this.
  12. Ecoclimber

    Ecoclimber Senior Member

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    It will take a substantial amount of money to file a case. There are other avenues that can be used with other organizations that are being investigated at this time.
  13. Izola

    Izola Senior Member

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    In my humble opinion, gather up all the foregoing responses and ship them off as a reply. Of course my social isolation has left me bereft of appropriate social discourse, but it certainly will set a few of their humanoids back on their heels and maybe provoke a little teeny bit of thought. Oh dear, I keep hearing, in the distance ". . . slay them!" And, oh dear, my imagination has run about on its own., again. Izola
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  14. aimossy

    aimossy Senior Member

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    its almost like the response was code for oh yes we will have some medical experts to see if yours and the science speak the truth.
    far out I hope some super quality studies get published before the end of this process.
    it was quite an arrogant response to very concerned people.......oh but we are used to being looked down on. two finger salute to that personally. hope I don't offend anyone here saying that.
    we will win this war of recognition eventually. patients with ME have learnt the art of serious perseverance in ways they couldn't even comprehend.
    wish we had a two finger emoticon sometimes.LOL:D but that could turn out a bit inflammatory.
    Izola, Keela Too and rosie26 like this.
  15. leela

    leela Slow But Hopeful

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  16. Firestormm

    Firestormm Guest

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    Would I want to see only ME medical experts on the panel?

    Not sure. I'd certainly like to see them in the majority and called to provide evidence alongside researchers. I'd certainly value their opinions highly and would want them to contribute to the recommendations, and certainly to endorse what is produced.

    However, I'd also like some present who don't have experience of ME to ensure that the recommendations and operationalised 'guideline' reinforces that ME is real and distinct and can be diagnosed effectively.

    We do need to be as certain as we can that other common diseases are able to be dismissed as not being 'CFS'. That alternate explanations for the presented symptoms can be recognised and I think input from non-ME-experts would be useful.

    I mean how many times do we hear that doctors don't know what they are talking about due to their disbelief and/or unfamiliarity?

    If some more general - but related disciplines - are present their opinions may help ensure what is produced is more capable of swaying ignorant doctors when it is published.

    Do they need to be on the panel?

    I suppose they could be called as non-contributors to review what is produced, but I think their endorsement of the recommendations could prove useful.

    It might also depend on who they were. Hard really to interpret the reply in the email at the top of this thread - though I can certainly see why you have all responded as you have.

    I'd like to see something produced that has run the gauntlet of many opinions: they are after some form of consensus after all (though you'll no doubt feel that word is open to interpretation - and rightly so).

    At the end of the day, whatever is produced, will not please everyone in every respect. And you could say the same about the Canadian Consensus as well, which is after all yet another compromise of opinions, appropriate only until such time as the elusive biomarkers can be found, substantiated and applied.
    Last edited: Nov 13, 2013
  17. aimossy

    aimossy Senior Member

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    I actually agree stormy that you need a mix and your rationale for why!
    it's the unfortunate approach of wording that is used to address a group of people who have expressed distress and concern and have been through so much.
    its the attitude, dismissal and lack of openness in the way they communicate that keeps traumatising people who have already been traumatised, that triggers the angry response. pretty hard to develop trust.
    I hate the attitude but still hope that quality research gets published before the end of the process and still hope that all the pressure that gets applied will have some influence on outcome at least in the sense that they will know they will have some pretty angry people if they basically spit on us now stormy.:)
    sometimes i feel at the moment like we are at the beginning of the crux period of history with this condition.
    like we are on the very edge of the verge of change that's happening.
    some people may think that's too positive but I can understand if people still feel negative in this sense.
    Izola and usedtobeperkytina like this.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Firestormm, it would be great to have non-voting consultants in case definition drafting, neurology, immunology, etc., a research staff and million dollar budget at an all-ME-expert panel's disposal to improve the CCC. I say please treat us seriously like any other disease and get us those resources and Id be thrilled.

    But our experts are not babies who need babysitting and approval for an ME definition by non-experts who know nothing about ME! That's ludicrous. Who cares if we get some more credibility in the outside world for a definition that is flawed because too many amateur cooks have thrown in their own ingredients and ruined the soup?! That ruined soup is a ruined definition that will continue to ruin the science, ruin our health and ruin our lives. Enough already! Non-experts are non-negotiable.
    Izola, Iquitos, taniaaust1 and 2 others like this.
  19. Ember

    Ember Senior Member

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    Kate Meck credits only those less familiar with the disease with the capacity to objectively approach and understand “the scientific evidence and the experiences of the ME/CFS experts and the patient community.” With expertise reduced to experiences, clinical observation is rendered unscientific.
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  20. Firestormm

    Firestormm Guest

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    @aimossy Lol to the 'stormy' :rofl:

    @justinreilly I think if we had more of an idea what it is the non-experts will do it might help, but I do think that ME or CFS especially in the US is in need of greater approval of any definition, than is occurring simply among those who claim to be most familiar with the disease.

    It may also be part of the approval process of course. Other disciplines - represented by non-ME experts - may need to sign-off on the recommendations, but I would imagine they would be needed to contribute.

    I do understand the idea that having non-experts taking part may further dilute what is hoped will be a 'tight' definition, and that you might feel for example that the NICE Guideline is too broad, and too indulgent of CBT, GET and Activity Management. Though it would be rather good I think to hear what it is you do want - not you specifically - by way of a 2013 CFS/ME Guideline for the USA even if the CCC forms the backbone of it.

    Right. That's me. Off back to bed.
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