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Death Contract? ME/CFS Experts and Advocates Unite to Oppose US 'Case Definition' Contract

Discussion in 'Phoenix Rising Articles' started by Mark, Nov 1, 2013.

  1. leela

    leela Slow But Hopeful

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    This decades-long long-con is just so fricking infuriating. I am so ill right now, and these clowns just keep adding acts to their three-ring circus of deception, denial, and denigration. SO over it.
     
    Last edited: Nov 3, 2013
    justinreilly, beaker and Sean like this.
  2. Mark

    Mark Acting CEO

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    Thank you everyone who's posted here with appreciation for the article. I just want to acknowledge Nielk's huge contribution to it; it was very much a joint effort even though my name's at the top because I did the final edit.

    I don't have much free time right now, so I'll just highlight one point from the above which seems important.

    Whilst I agree that most efforts right now should go into getting the contract stopped, I think we should plan for the worst as well - and from the evidence so far, there will probably be tiny notice periods and not enough time for prepare when they do eventually take some kind of public input. So I think it's well worth starting to think seriously about issues like the above, which means researching conflict of interest issues, in particular with regards to how the IOM rules work and what kind of COI comments have a chance of sticking, and (at some stage) with regards to people from previous IOM work (eg on GWI) who might be on the panel. It might also be worth thinking about which parts of the consultation process might offer opportunities to protest against the process itself. Finally, if things did end up as in Nielk's 'nightmare scenario', we would have a very specific common cause with GWI patients and advocates, so we might do well to link up with them over all this.
     
  3. Sing

    Sing Senior Member

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    I always wonder how much influence being in Charlotte, NC has on the culture at the CAA. That city and state are a far right Republican place, politically, where collusion with power and business and a sexist, racist social culture holds sway. The CAA is located in the same town as the CDC, for those who don't know. This largely women's disease, which could have cost insurers big money in long term disability, has instead been marginalized and categorized as only a psychiatric problem. We patients have born the cost in every way, as we have gone from doctor to doctor, each patient alone trying to figure the illness out and to come up with a successful treatment protocol.

    Very fortunately we have been able to come together and confer with each other on this website, and a few others. Now this galling occasion is bringing us together. Everyone reading here, please sign the petitions and send the letters. If you can't do it all, do it in part. It is our best chance to show political strength!
     
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  4. Nielk

    Nielk

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    The following is what PANDORA says they learned about the selection process to the panel by the IoM.




     
  5. Sing

    Sing Senior Member

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    How can this be considered science when knowledge is considered bias and ignorance, a correct and helpful neutrality? Since when is our illness only defined by politics rather than science? They think they are basing their procedure on science but are doing so on a basis of politics instead. The whole business is "bass ackward"!
     
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  6. beaker

    beaker CFS/ME 1986

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    CDC is in Atlanta.
     
    Sing likes this.
  7. alex3619

    alex3619 Senior Member

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    I agree with @Mark on the point of planning. Strategy is the art of prior preparation, the 6Ps. Prior Preparation Prevents Piss Poor Performance.

    We need layered strategy. Our goals are prioritized, starting with stopping the contract, but that does not mean we don't plan for other eventualities. If we don't plan, we will be caught by surprise and unable to react in a timely fashion again, and again, and again.

    We also need to plan to be pleasantly surprised by outcomes, as well as for the more dire outcomes.

    One message we do have to be clear to send, which I think crosses the anti-IOM and pro-IOM lines, is that there are outcomes we will all find unacceptable. Embracing psychobabble is not an option. Further cuts to pathetic research funds into biomedical causes is not an option. Etc.

    One problem with a consensus viewpoint, using nominated individuals, is what I am coming to think of as an information horizon. These individuals will be good at what they do and know about. However they will bring assumptions, presumptions and irrelevant science to the table. How do we break through that and make sure they are aware of key issues from published research that must be addressed? They can only see out to their horizon, we need to be sure their telescopes are aimed at the important landmarks.

    If a claim is made that CBT/GET research on CFS or ME is evidence based, we need to target that claim. It is not evidence based. It is only claimed to be evidence based.

    There are many other issues. These few just came to mind because they are things I think about a lot.
     
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  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    They have not disclosed when they will reveal the proposed slate for the panel. It will be communicated via the IoM MEcfs listserv. They have said we get twenty days to comment.

    The big problem, as Sing and others have noted is that in their published selection criteria for all panels, above, bias is explicitly not considered a conflict of interest or a reason to exclude someone from the panel, but being a researcher in the field of ME is. That is messed up.
     
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  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Wow, Iquitos, this IS exactly what we need!
     
    Sing likes this.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I haven't seen it mentioned anywhere that anyone has appealed to organizations which are watchdogs for psychiatry abuses. This sounds like a great idea. IMO, to be pursued after we deal with IOM and the other definition intitiatives. Haven't heard of CCHR
     
    WillowJ likes this.
  11. shrewsbury

    shrewsbury member

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    Exactly Justin. Most people seem to not know that in the 1st definition the IOM ever did, with Susan Vernon on their 'expert panel' for GWI, they referred to CFS as being a psychological illness ""Two specific therapies are recommended for people who have CFS: CBT and graded exercise therapy (GET) (CDC, 1994; Mayo Clinic staff, 2011; National Collaborating Centre for Primary Care, 2007). CBT provides a framework for patients to change how they think and feel about their illness and teaches behaviors that provide patients with a greater sense of control over symptoms (CDC, undated; National Collaborating Centre for Primary Care, 2007). Exercise has been associated with the body’s natural release of endorphins, natural pain relievers. Both exercise and endorphins have been shown to improve a number of the symptoms of CFS and related syndromes (Cleare, 2003; Harber and Sutton, 1984)."

    http://www.iom.edu/Reports/2013/Gulf-War-and-HealthTreatment-for-Chronic-Multisymptom-Illness.aspx
     
  12. Sean

    Sean Senior Member

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    I like the military version:

    Aim for the best, but also prepare for the worst.
     
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  13. shrewsbury

    shrewsbury member

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    Mark, you've missed an important part of the history here. This didn't start Sept 23. It started with HHS trying to ram through a secret contract with no terms with the IOM on August 30, with a 1 business day option to reply. The CFSAC has been calling for our experts to update the inadequate Fukuda definition. Instead, contrary to the CFSAC recommendations and community demands, on Aug 30, 2013, the Friday before the Labour Day long weekend, HHS, through FedBiz announced that they were awarding the contract to define CFS to the IOM. I, and a few others I think, found this out and spread the word, and a huge upswelling against the lack of transparency, expert and community involvement, and waste of resources to an inexpert and apparently harmful agency that had already prejudged ME/CFS as being a psychological disease in the only definition they have ever done:GWI. Unfortunately, I didn't take a screen shot of it, (maybe others did?; if not, and FOI will show it if need be) but it basically said that the contract was unilaterally awarded to the IOM, and info could be submitted, and the contract would be confirmed on Tues Sept 3 (the Monday being a holiday). No info about what or how it would do things; absolutely nothing about including the experts or community.

    Our rage against this action caused HHS to extend the response date to Sept 13 I think it was, probably whatever the legal amount of time for a response is. The as the outrage continued, they said that they had cancelled the contract and would consult the experts and community. I believe occupycfs recorded the details. Then, without any consultation, on Sept 23, my guess is after having been informed that 36 experts were signing a letter saying that they've been using the CCC, and for HHS to adopt it asap, and explaining how harmful and inexpert the IOM were, and why an contract with them should NEVER be engaged in, HHS rammed through the IOM contract a few hours before the Experts Consensus Letter was published - with none of the consutation with the experts or community,.

    Personally, I find it beyond belief that when we have now 50 ME and CFS experts reaching consensus to adopt an international consensus document that most of the experts use in research and diagnosis, and to not use IOM as they are uniformed and have published already their beliefs that ME and CFS are psychological diseases, treated by CBT and GET, quoting sources that have been shown to be inadequate, and ignoring 5,000+ biomedical papers that show the physical nature of the disease(s) and that CBT is neutral (like with cancer a coping mechanism - not the UK twist that says that ME is an illness false belief) and GET that the Lights and Snell/Stevens et al and more have shown that exercise beyond a patient's functioning level harms.

    How dare the IOM claim a 'consensus study' when they are excluding our experts and community and ignoring their consensus adoption of a consensus paper?????

    How dare HHS not respind to the initial or updated experts letter?

    There is no veto/approval power for our experts or community in this process. These IOM non-experts get to do whatever they want. They already prejudged ME and CFS to be psychological in the GWI documents. Why would we ever think that they could do a better job than our experts have already done?
     
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  14. shrewsbury

    shrewsbury member

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    I have to apologize. I flew off the handle after reading the first paragraph while I wasn't able to read the whole article, and I extrapolated that the premise presented in the first paragraph, that the community went into shock at the awarding of the contract to the IOM on Sept 23, despite being contrary to the CFSAC recommendations and community outrage since Aug 27, and I'm sure rammed through because they'd heard whispers of the expert letter saying use the CCC like experts do already and don't contract with the IOM as they are inexpert and harmful, was your main point as others have been writing, instead of recognizing that it was the shock waves from the 27th of August that was the beginning of all.

    I should have waited til I could skim to see that you worked your way backwards in the facts.
    Would have deleted my comment above if I could have figured out a way to do so.

    "On September 23rd, 2013, the US Department Of Health and Human Services (HHS) made an announcement that was to send shock waves through the worldwide ME/CFS community. "
     
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  15. Ren

    Ren Primum Non Nocere

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    Re. Sing: There are heroes and demons across all spectrums.

    Re. thoughts raised by others, including "IOM process - any issues raised in that discussion OR BY THE PUBLIC are investigated and addressed".

    (1) Can we (the ME/CFS community) submit a core set of studies to IOM? Such a request and answer will also more fully document and reveal IOM's process.

    (2) Can we ask for "real-time" access to the papers/studies/research material used by IOM? So we can build and submit specific counter arguments along the way.

    (3) Can we ask that meetings be filmed and posted on youtube?

    (4) Can we ask that all meeting minutes be publicly posted ASAP?

    (5) Anyone know if anyone has compiled a bibliography of the specific IOM literature (within "Gulf War and Health" - from shrewsbury's link) which claims CFS/ME is a mental illness?

    (6) Shouldn't IOM's pre-existing conclusions regarding CFS/ME (as represented in the Gulf War material) exclude IOM from participation - as IOM has a very recent and clear bias?!!

    (7) Can we submit specific arguments addressing the problems/fraud/etc. with the psychiatric literature used in "Gulf War and Health"?

    (8) Regarding a psychiatry watchdog group, I mentioned CCHR. I've only seen some of their material. They're supposed to be a secular, non-profit that works with people across the political/religious/etc spectrum and globe. To my understanding, however, they're funded (in part?) by the Church of Scientology, and this makes them controversial to some people - no offense to any Scientologists who may be reading this. I recognize realistically though that there could be political consequences.

    I just thought a group like this might have legal experience, financial backing, and motivation to address the psychiatric abuse involved with CFS/ME. Would be nice to have help from someone who specializes in such abuses. I understand there is of course nothing stopping me as an individual from writing to such a group. I just wanted to see what was out there in the community already - how people feel about it. Again, just thinking of legal experience. (Note to earlier self: Go to law school!! :)
     
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  16. Ren

    Ren Primum Non Nocere

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    "How dare the IOM claim a 'consensus study' when they are excluding our experts and community and ignoring their consensus adoption of a consensus paper????? "

    Exactly!
     
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  17. Desdinova

    Desdinova Senior Member

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    I can't help but believe that this was preordained from the moment Ian Lipkin found no biological cause in his study. Just as the result of the IOM contract when it is awarded is preordained. My belief is that when the Major medical players Government and Health Insurance companies met with the current government administration prior to the ACA ME/CFS was one amongst a list of so called syndromes, conditions, disorders and illnesses (they gave the Administration) that to be addressed (Taken Care of).

    We all know the popular mindset of it being psychological has been the persuasive belief for decades now. And we know that a disorders such as ME/CFS that are considered multisystemic are costly to treat. IMO it will always sadly boil down to costs, the all mighty dollar. As well as those who have built their fortunes professional and financial on these disorders being anything but biological in origin.
     
  18. Sing

    Sing Senior Member

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    Another absurdity which strikes me is that of placing us within the category, "The Public". Our bodies are the living repositories of ALL the data on ME/CFS and we patients are the closest thing to an expert class there could be. A CDMRP program, as detailed above for GWS sounds more appropriate--
     
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  19. alex3619

    alex3619 Senior Member

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    Semantics. It would be the consensus of the panel. It wont be the consensus of the experts and the patient community. The Gulf War veterans are about to push a no confidence claim on the IOM. We may have to do the same. We should also support the Gulf War veterans.
     
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  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Re
    (3) we could ask that the public meetings be filmed and posted on YouTube. That is a really good idea.
    But the other meetings are keep secret on purpose supposedly so they won't be unduly influenced by others.
    (5) no one has compiled cites to all nine volumes which apparently all imply CFS is a mental illness. I think this is important to do.
     
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