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MEA response to IOM report

Discussion in 'Institute of Medicine (IOM) Government Contract' started by charles shepherd, Feb 11, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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    wdb, Cheshire, WillowJ and 7 others like this.
  2. taniaaust1

    taniaaust1

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    Sth Australia
    Thanks Dr Charles Shepherd

    So true! There seems to have been no thought at all about how the international community would accept it.
     
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  3. Esther12

    Esther12

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    Jason said something similar.

    Patients have already seen the harm done by having a label imposed upon, and even though SEID is preferable to CFS, we're going to be understandably wary of anything that could be misinterpreted.
     
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  4. charles shepherd

    charles shepherd Senior Member

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  5. Gingergrrl

    Gingergrrl Senior Member

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    @taniaust1 I totally agree and I don't think there was even any thought about how the patient community within the U.S. would accept the name, let alone the international community. The IOM just did whatever they wanted IMO.

    This made me wonder, how does any official disease get it's formal name? Is there an international community of doctors and researchers who agree? How did HIV and AIDS get it's official worldwide name? I totally agree that this disease cannot have different names in different countries any more than any other disease should.

    I also don't think people here in the U.S. are going to accept the name change and the whole thing was a waste of time and money that should have been spent to fund real research.
     
  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Sean likes this.
  7. Aurator

    Aurator Senior Member

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    As a UK patient I would be interested to know what impact, if any, the MEA thinks the IOM redefinition will have on the choice and delivery of treatment for patients in the UK. Given that the IOM report underlines the fact that this is a physical not a psychiatric illness, and, more significantly still, makes intolerance of exertion the principal characteristic of it, how will this affect the status of the only two treatments currently offered to patients in the UK, namely CBT and GET?

    Specifically, since we now have compellingly authoritative support for the view that GET at least is a woefully inappropriate treatment for this illness, is there any justification for it to remain as an official treatment option even for a moment longer? Do we honestly still need to demonstrate via trials (that no-one is going to pay for anyway) that pacing is more effective? Are there not grounds for the immediate retirement of the NICE guidelines on ME/CFS, and a public commitment to a radical rethink? Am I unreasonably expecting NICE to be reasonable about this?
     
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  8. SOC

    SOC

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    Only if you are expecting the UK medical establishment to accept research and other investigations done outside the UK. So far they've been appallingly jingoistic about anything useful produced outside their own very limited circle.
     
  9. Aurator

    Aurator Senior Member

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    I'd like to know on what grounds they can continue to studiously ignore foreign research findings.

    Is "We're sceptical about the validity of these findings" to be perpetually wheeled out as a disingenuous abbreviation for "It suits us to say we're sceptical about the validity of these findings" and perpetually to go unchallenged? Is it so difficult to expose the sham of scientific integrity here that hides behind a cloak of scientific integrity? Can't we just wipe away all this obfuscation and obstructionism once and for all, and seriously get down to solving the riddle of ME/CFS/SEID like the rational human beings we all like to think we are?

    I despair of human nature most not when I see the uneducated and the unhinged lashing out at the innocent, but when I see people who are highly educated and publicly respected promoting worldly agendas so far-reaching in the damage they do that they would be unworthy of the uneducated and the unhinged.
     
  10. Hip

    Hip Senior Member

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    I don't think it is jingoism that prevents the adoption of helpful ME/CFS treatments in the NHS, but rather the monolithic, bureaucratic and governmental nature of the National Health Service. In the US health care setup, free market forces encourage individual doctors to offer treatments that can help a subset of patients (because if a doctor gets a good reputation in terms of ameliorating ME/CFS symptoms, patients will beat a path to his door). One of the intrinsic values of a free market force environment is the voting with your feet aspect which it automatically encompasses.

    With the monolithic, bureaucratic and governmental NHS, as far as I am aware, there aren't any internal structures that encourage individual doctors or clinics to experiment with treatments that might help a subset of patients. Rather, you get governmental organizations like NICE which impose monolithic clinical practice guidelines on the entire NHS, which to me seem to reduce clinical freedom, and discourage individual doctors or clinics from trying out possibly helpful treatments.



    There are secret plans to privatize operational aspects of the NHS in the future. Though these are viewed with great suspicion by a lot of the public, because people fear they will erode the ideals of socialized medicine, and lead to a more US-type medical system where the quality the medical care you receive may depend on your income. Though it's interesting that the US is currently moving a bit towards socialized medicine, and the UK is planning to move towards some privatization of its health care.

    I don't know the details of the NHS privatization plans, but I hope that they might somehow harness the positive aspects of free market forces, which should encourage clinical freedom, without introducing the negative aspects of privatized health, such inferior health care for those unemployed or on low income. I would like to see careful thought going into this NHS privatization, such that it encourages the advancement of medical treatment.




    On the medical research side, starting in the early 1980s, the UK did all the original ground work on the enteroviral theory of ME/CFS. It is a shame that this was not replicated in the US until very much later, with the excellent work of Dr John Chia, in the mid 2000s. And it is a tragedy that Chia's work, which replicated and brought forward the early British enteroviral findings, has not be further investigated for a decade now, either in the US or anywhere else.
     
    Last edited: Feb 19, 2015
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