New NIH article touting benefits of CBT and GET

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

Scarecrow

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

SOC

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

Perhaps the National Library of Medicine didn't get the memo.
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:
 

alex3619

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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.
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.
 

jimells

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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.
 
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user9876

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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.
 

JayS

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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.
 

Asa

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(Sorry for post length!)

The National Library of Medicine (NLM), on the campus of the National Institutes of Health in Bethesda, Maryland, has been a center of information innovation since its founding in 1836.

The world’s largest biomedical library, NLM maintains and makes available a vast print collection and produces electronic information resources on a wide range of topics that are searched billions of times each year by millions of people around the globe. It also supports and conducts research, development, and training in biomedical informatics and health information technology. In addition, the Library coordinates a 6,000-member National Network of Libraries of Medicine that promotes and provides access to health information in communities across the United States.
"...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.)
 

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Anika

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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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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,
____________