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New NIH article touting benefits of CBT and GET

Discussion in 'General ME/CFS News' started by greeneagledown, Nov 25, 2015.

  1. greeneagledown

    greeneagledown Senior Member

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  2. John Mac

    John Mac Senior Member

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    So much for the NIH's new ME/CFS era.
     
  3. duncan

    duncan Senior Member

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    The bloom is off the rose.

    After all, it's been a month.
     
    Marco and MEMum like this.
  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Feeling betrayed.

    How will Collins respond? (If at all)
     
    MEMum likes this.
  5. Scarecrow

    Scarecrow Revolting Peasant

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    Perhaps the National Library of Medicine didn't get the memo.
     
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  6. Snow Leopard

    Snow Leopard Hibernating

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    I'm pretty sure that there were quite a few memos telling them they shouldn't spin null results as positive.

    The problem is that they reproduced this article without double checking any of the claims. Makes me think twice about anything else they have published on that site.
     
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  7. Scarecrow

    Scarecrow Revolting Peasant

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    I'm being flippant (which doesn't always come across). Not defending them at all.
     
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  8. SOC

    SOC

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    Hello, right hand? Have you looked at what the left hand is doing? Hello? Hello?

    I'm willing to bet there's lot of truth in this. It's going to take time for Collins' commitment to us to trickle down through the system. I won't be the least surprised to hear that some BPS advocate called the NLM and offered this article. Some ignorant (and possibly lazy) NLM staffer got suckered in by the offer of a 90% prewritten piece. It sure looks like the type of thing that comes out of the SMC. :mad:
     
  9. Sidereal

    Sidereal Senior Member

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    lycaena, Roseblossom, Woolie and 24 others like this.
  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I was trying to think of something intelligent to post about this but all I can think of is :

    Bllurrghh...
     
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  11. Webdog

    Webdog Nothing left to say

    Liability:
    For documents and software available from this server, the U.S. Government does not warrant or assume any legal liability or responsibility for the accuracy, completeness, or usefulness of any information, apparatus, product, or process disclosed.

    https://www.nlm.nih.gov/medlineplus/disclaimers.html
     
  12. alex3619

    alex3619 Senior Member

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    That is an important issue. Ignoring such obvious bias that many undergraduate students would easily spot indicts the parties who write about biased issues in glowing terms. We have grounds for not trusting major medical journals, the medical profession in general, government health organizations (anywhere), psychiatrists in general, and so on. Such obvious failure is tarring individuals and institutions globally. What are they going to do to fix things so this does not happen again? Is this even possible in the current medical culture? The entire medical profession is in disrepute over this.

    There are of course medical professionals who are trying to fix things and produce rigorous scientific accountability. They seem to be a distinct minority however.
     
  13. jimells

    jimells Senior Member

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    Anybody heard of this "Jim Pagel, M.D., associate clinical professor, University of Colorado Medical School" person before?

    I sent this message to the NIH using the contact link:

    The article published at https://www.nlm.nih.gov/medlineplus/news/fullstory_155858.html is wrong, wrong, wrong. Please read the actual research paper, or even just the abstract, not somebody else's opinion of what the paper says.

    The subtitle claims "Study shows benefits from certain treatments can last more than two years". Actually the paper shows no long term differences between the four treatment arms, as is perfectly clear from the abstract as published on your own website:

    http://www.ncbi.nlm.nih.gov/pubmed/26521770

    "There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up."

    The null result could not be more obvious. Please remove this article from your website immediately.


    ----
    Perhaps some other folks could send a similar message.
     
    Last edited: Nov 25, 2015
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  14. user9876

    user9876 Senior Member

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    We can blame the NIH or bad journalists but blame should really go to Sharpe and Oxford University who are intentionally trying to mislead people. They made an explicit decision to do this and the SMC helped them to promote that decision.

    We still need to complain about press coverage. Unfortunately in the UK journalists prefer to further stigmatise patients rather than blame Oxford University.
     
  15. JayS

    JayS Senior Member

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    I have no idea who Pagel is or why the reporter would contact him. In situations like this, though, I see 'Colorado,' and I think James Jones. I don't want to jump to conclusions. I always wondered, though, if Jones, one of the worst at CDC, knew Lisa Corbin & that was how she ended up on CFSAC. Again, pure speculation.

    NIH probably shouldn't be thought of as 'responsible' for rubber-stamping this piece of garbage, but they do have to be accountable. It's especially interesting given what Brian Vastag mentioned that Francis Collins said to him about 'skill sets' or whatever it was.

    Even if he hadn't said such a thing, the public announcement followed by this is absolutely damning. They deserve zero slack as far as I'm concerned. This is BS, period. But Healthday articles getting plastered all over the place, when they're this bad, I don't want to sound paranoid, but it's difficult to believe this happens by accident. One simple Google search would've showed the reporter that Science covered David Tuller's blogs, and said it was a controversy. We can't know if the piece originally mentioned this, but whether it's the reporter or the editor, even if it's likely it was just status quo on the Library end, it's like a multilevel failure of something that's very similar to peer review.

    But now people are starting to pay attention.
     
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  16. Sean

    Sean Senior Member

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    Certainly is. :grumpy:
     
    beaker likes this.
  17. beaker

    beaker ME/cfs 1986

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    I tweeted :

    .@NIHDirector http://ow.ly/V5Udv by @NIH false. Plse remove ASAP.It goes against your #MEcfs announcement. Public correction welcomed.

    If you care to copy or use to make your own, be sure to put the "." in front of the @ so others will see.
     
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  18. Asa

    Asa Senior Member

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    (Sorry for post length!)

    "...Maybe a list of recommended books/work could be submitted to CFSAC for their opinion and then recommendation to the library that such books/work be added."

    The above from: http://forums.phoenixrising.me/index.php?threads/national-library-of-medicine.38708/



    And when NLM becomes properly educated, perhaps they and other .gov agencies can do proper ME-awareness tweets as well. See: http://forums.phoenixrising.me/index.php?threads/may-12-government-observances.37418/#post-594817



    Edit: See also NLM October "fatigue" tweet. Tweet links to general page about fatigue, which also includes CFS and which links to a specific page for CFS* (advocating GET) and which now includes the article named in this (here-and-now which you're reading) PR thread...
    *https://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html
    http://web.archive.org/web/20151126...h.gov/medlineplus/chronicfatiguesyndrome.html

    NOTE heading: Chronic Fatigue Syndrome: Also called CFS, ME/CFS, Myalgic Encephalomyelitis, SEID, Systemic Exertion Intolerance Disease

    Note too SEID label but Fukuda (I believe) diagnostic criteria! (Crude -- but the phrase Can't tell their ass from a hole in the ground immediately comes to mind...)



    Edit II: In March 2015 Medline Plus tweeted about immune problems in CFS. Linked article ("Immune System Changes Tied to Chronic Fatigue Syndrome") page is now MIA. Archived versions available here:
    http://web.archive.org/web/20150421...ih.gov/medlineplus/news/fullstory_151202.html

    Note that article above also appears MIA within Medline Plus search feature. (See screen grab.)
     

    Attached Files:

    Last edited: Nov 26, 2015
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  19. Anika

    Anika Senior Member

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    I believe the Health Day article appeared on the last day for appeal by PACE investigators of the decision requiring them to disclose certain data (I haven't heard of an appeal so far).

    "Coincidence"? Pique?

    The authors have an "uncanny" knack for having their papers appear at very "opportune" moments. And U.K.Science Media Centre has been very helpful in getting publicity for their views and "results".

    Most researchers don't have the disposition or means to accomplish this. I think they do.
     
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  20. Roseblossom

    Roseblossom

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    I wrote to them too. They responded today:

    RE: "Chronic Fatigue Syndrome" article inaccurate
    Dec 12/03/15 4:19 PM
    Dear ______,

    MedlinePlus news items come from an outside provider (HealthDay...). The National Library of Medicine does not write the news stories. After reviewing the recent HealthDay story on Chronic Fatigue Therapies, we removed the story since it did not provide a balanced view on the topic.

    Sincerely,
    Customer Service
    National Library of Medicine
    https://www.nlm.nih.gov/medlineplus/news/fullstory_155858.html

    That was their response to this email that I wrote to them:

    RE: "Chronic Fatigue Syndrome" article inaccurate
    DATE: 11/28/2015
    MESSAGE: I was dismayed to see that your article in MedlinePlus about Chronic Fatigue Syndrome on 11/24/15 is full of inaccuracies.
    Why did you not instead use your own accurate comprehensive 2015 report by the U.S. Institute of Medicine http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx to research this article so that it would be current & factual?
    Please address this mistake by replacing that erroneous article with an accurate article as soon as you can. Thank you for your attention to this.

    Sincerely,
    ____________
     

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