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"How to kiss $200 million goodbye - report decries state of ME/CFS research"

Discussion in 'General ME/CFS News' started by Sasha, Oct 23, 2014.

  1. Sasha

    Sasha Fine, thank you

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    Fascinating piece on the AHRQ report on Cort's blog today, including Solve ME/CFS's reaction:

    http://www.cortjohnson.org/blog/2014/10/22/report-decries-state-mecfs-research/

    The key quote for me was:

    BTW, I've noticed lately that some people are reposting blog posts from elsewhere in full here, but let's please not do this with Cort's piece. I understand that the idea is to make it convenient for people here to read it but it's not good netiquette - bloggers work hard and deserve to get the traffic to their own sites - and it's a breach of copyright (quoting small bits as I have done is also a breach but I'm recklessly assuming it's OK to quote a couple of sentences as long as I'm pointing people back towards Cort's blog).
     
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  2. zzz

    zzz Senior Member

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    Actually, quoting small excerpts from a copyrighted work is perfectly legal, both in the UK and the US.

    And thank you, Sasha, for posting this notice here. I've read the article, and it's a real eye-opener.
     
  3. Sasha

    Sasha Fine, thank you

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    Not to divert my own thread into copyright issues but it's a grey area, as I understand it - it depends on how substantive the quoted material is (and the percentage quoted is irrelevant). But I'm confident in this instance that Cort will be happy with me using this excerpt to flag up an interesting post of his and sending people to his blog for the main event so I'm not hiding behind the sofa waiting for the police to come and get me! :cool:

    Fascinating, isn't it?

    Interesting times! :)
     
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  4. helios

    helios

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    "the vast majority of ME/CFS research studies were omitted from this evidence review due to their inability to meet the rigorous standards required for inclusion"
    Are the rigorous standards the same rigorous standards applied to all medical research conducted by the NIH or does CFS studies have higher hurdles to jump? Not only is CFS research badly underfunded it possibly seems like a bunch of incompetents have used the $ to fund their career and possible perks along the way. I love to see some people overseeing this research booted out like they would be held accountable in the private sector.
     
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  5. Bob

    Bob

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    In this instance, the term "rigorous standards" applies to the AHRQ review, which (as far as my understanding goes) uses the same standards and methodology for all of its similar reviews.

    I'm not sure if that's a fair or accurate assessment. On the whole, this may not be the fault of the individual researchers. As you say, CFS research is severely underfunded, and has been starved of cash. In my opinion, that's exactly why there is a lack of top quality research...

    If a researcher cannot get adequate funds, then they cannot carry out adequate research.
    If a researcher is not confident of receiving a large grant for a CFS study, then they will design a small study instead, and apply for a (more realistic) small grant for an under-powered or exploratory study.
    If researchers can only get small grants, then the studies that they carry out are always going to under-powered.
    A lack of funding means that the best (i.e. the most powerful and most expensive) studies and the best researchers fail to receive funding.
    Dr Lipkin has famously asked for funding for a high-powered study of the gut microbiome in ME/CFS patients, but was refused funding, twice.
     
    Last edited: Oct 23, 2014
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  6. aimossy

    aimossy Senior Member

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    The amount of money the NIH get to throw at things is phenomenal and shocking! They are putting money into research that does not get them further with respect to the illnesses it is for. This seems like it may not only be applied to ME/CFS. This is real egg on your face stuff and really embarrassing.

    “Not only has the NIH egregiously underfunded this illness (based on prevalence), but the research NIH has funded has not contributed to an evidence base that has moved the science forward.”

    Solve ME/CFS noted that since 1991 the NIH has spent 191.5 million dollars on ME/CFS, yet the AHRQ ended up rejecting ninety-nine percent of the NIH-funded studies because of design flaws."

    Thanks Sasha and I enjoyed the article from Cort.

    So the people on these panels that get to choose where money goes may have collectively quite a large amount of factual knowledge and qualifications, however the collective amount of common sense seems extremely low considering the amounts of money they get to spend. This is ridiculous and I am laughing. Makes me think of one of my favourite childhood shows."The Muppet Show"!

    If I didn't laugh I would cry at this hopelessness!

    I have heard of research being approved under the ME/CFS funding bracket that wasn't actually on ME/CFS. I have also seen a list Jenny Spotila put out that showed what studies were funded - it was a shock to me. A fair amount of studies on the list did not seem up to scratch even with my level of knowledge.
     
    Last edited: Oct 23, 2014
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  7. Nielk

    Nielk

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    I have posted Solve ME/CFS's report on the p2p review HERE.

    I am not sure what is so eye opening about this report. They are basically stating what we, the patients, advocates and experts have been stating the past 30 years.

    - Pitiful government funding
    - Most of the government funding is based on psych. research

    The report summarizes:

    The majority of advocates have been shouting this from the rooftops yet the organization Solve ME/CFS (previously known as CFIDS Assoc.) has been very keen in being a participant. They pride themselves in being the largest ME/CFS organization. Why are they not organizing a concerted protest in opposition on this process?
     
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  8. Sasha

    Sasha Fine, thank you

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    Didn't they remove themselves from advocacy a few years ago after pressure from patients?
     
  9. Gemini

    Gemini Senior Member

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    @Simon posted on another thread a recent paper from Stanford indicating 85% of "all research resources" are wasted raising the question how unique is ME/CFS?

    http://phoenixrising.me/forums/inde...search-true-john-ioannidis.33320/#post-514890
     
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  10. Nielk

    Nielk

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    Yet, they still speak/act as if they represent us. They sit as a patient representative organization on CFSAC.
     
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  11. Simon

    Simon

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    Not particularly, I suspect, though my gut feel is that other illnesses have more good studies than we've been blessed with. Certainly the 85% waste figure in the John Ioannidis piece is lower than the 99% reject rate by the AHRQ, though presumably the studies in the surviving 1% were significantly bigger and might account for more than 10% of reserch spend.
     
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  12. Denise

    Denise Senior Member

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    I noticed the following in batch #2 (p.69) of the FOIA documents that Jeannette Burmeister has kindly released

    upload_2014-10-23_12-10-8.png
    This seems to indicate that the number of studies examined in a systematic review is related to the amount of money spent on the review.




    fwiw - the evidence review for the opioid P2P examined even fewer articles than the evidence review for this illness.
     
  13. Sasha

    Sasha Fine, thank you

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    It might be the other way round - that the amount of money needed to be spent on the review is estimated upfront by the results of a rough literature search.
     
  14. Denise

    Denise Senior Member

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    Could well be Sasha.
     
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  15. Gemini

    Gemini Senior Member

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    Together with the low NIH funding rate, ME/CFS's high AHRQ reject rate is no recipe for progress. Substantial changes & improvements in NIH program management & leadership are sorely needed.
     
    Last edited: Oct 23, 2014
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  16. Nielk

    Nielk

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    But, all these constrictions and shortcomings of this work should not have come as a surprise to the NIH. They are the ones who are in control of the government research funding in this country. They know exactly what type/amount of research has been conducted in the past 25/30 years in ME/CFS.

    They are also the ones who have initiated this process as well as directed its controls. By dumping all criteria into the mix paired with the failure of rigorous funding, surely they knew what the outcome would show.

    Unlike Cort and Solve ME/CFS who feel encouraged that the result of this process will revitalize US funding for research because they the process is highlighting the shortage and gaps in research for the disease. Most stakeholders feel that the outcome of this process will be a "legitimate proof" for them to show that ME/CFS is not a real biological illness.

    It will "prove" they will say that this is a somatoform illness where the only proven beneficial treatment is GET, CBT and /or antidepressants. They will use this to deny disability benefits.

    The reason this rings true to me is because if they were truly benevolent and this process was truly an exercise to gain knowledge to further benefit the patients, they would not have omitted the most important question of what is ME and what is CFS? What are the subsets of the disease?

    Without tackling that question first and foremost and by including every criteria (even the nonsensical Oxford), it was assured that the results would be at best meaningless and more precisely damaging to the patients.

    Moreover, the fact that this has been all done without transparency and with the "jury model" of a panel of people ignorant of the true disease is proof that this is an act of malfeasance.

    This can be likened to a producer/director of a movie. He chooses the story. He chooses which way the plot should go and where he wants the emphasis to be. He hires the actors who he thinks will bring the specific effect he has in mind. He chooses the setting that will best bring about the right effect.

    These processes of the IOM and P2P have been produced/directed by the HHS/NIH in order to bring about their desired outcome.
     
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  17. A.B.

    A.B. Senior Member

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    And Rituximab is not even mentioned. Because claims of somatoform disorder look ridiculous in the context of the Rituximab results.
     
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  18. Hate ME/CFS

    Hate ME/CFS

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  19. Hate ME/CFS

    Hate ME/CFS

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    Nielk,
    I totally agree with you about Solve ME/CFS. Personally, I don't want them to speak on our behalf. They have become too chummy with the CDC/NIH, and they have Suzanne Vernon spouting her propaganda, that sounds just like William Reeves rhetoric. A real patient org would call our illness by it's correct name CFIDS. I would rather have the National Cfids Association representing our best interests.
     
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