New NIH article touting benefits of CBT and GET

[Bob]

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.

This is really good news. Thanks so much for sending that message, @Roseblossom

Here's a bit more info about the campaign that got the article removed and the response from NIH:
https://m.facebook.com/kathryn.stephens.9/posts/1073229146035127

 

[SOC]

Now, can we get them to publish a short statement explaining why they took down the articles so that all the doctors who read it before it was taken down know what pile of hogwash... er... unbalanced journalism it was?

Taking it down is good, but not enough. They need to repair the damage as well.

 

[Bob]

Now the National Library of Medicine has copied the inaccurate NHS Choices article onto their website:
http://www.ncbi.nlm.nih.gov/pubmedh...-therapy-useful-for-chronic-fatigue-syndrome/

 

[Esther12]

Now the National Library of Medicine has copied the inaccurate NHS Choices article onto their website:
http://www.ncbi.nlm.nih.gov/pubmedh...-therapy-useful-for-chronic-fatigue-syndrome/

Would be good to get that independently assessed.

 

[Esther12]

Looks like they just routinely put up all NHS Behind the Headlines.

 

[Valentijn]

 

[SOC]

Somebody (Collin's staff would be good) needs to tell the NLM that the NHS "does not have the skill set" on this particular topic.

 

[jimells]

Somebody at the NLM must be feeling the heat. On Nov 25 (when I sent my email) I received this non-responsel:

The National Library of Medicine received your report of an error in a MEDLINE/PubMed citation with the [PubMed - as supplied by publisher] tag.

Citations with the [PubMed - as supplied by publisher] tag appear exactly as the publisher submits them. These citations have not gone through the NLM quality control procedures and indexing process.

NLM cannot make any changes to the citation until the citation no longer has the [PubMed – as supplied by publisher] tag.

While the citation has the [PubMed - as supplied by publisher] tag, contact the publisher to ask that the publisher submit a replacement file with the correct information, using the Instructions for Replacement Files at http://www.ncbi.nlm.nih.gov/books/NBK3828/#publisherhelp.Instructions_for_Rep.

Thank you for your interest in NLM products and services.

So I was very surprised to find a follow-up message yesterday that is identical to the one sent to @Roseblossom

It reminds me of whack-a-mole, but clearly we are having some influence on what the NIH is publishing. I'm up for whacking a few more moles...

 

[SOC]

Somebody at the NLM must be feeling the heat. On Nov 25 (when I sent my email) I received this non-responsel:

So I was very surprised to find a follow-up message yesterday that is identical to the one sent to @Roseblossom

It reminds me of whack-a-mole, but clearly we are having some influence on what the NIH is publishing. I'm up for whacking a few more moles...

What, may I ask, does their response about not being able to change tags on a PubMed document have to do with your point that the article is riddled with inaccuracies?

 

[TiredSam]

http://www.meaction.net/2015/12/03/we-succeeded-in-removing-nih-cbt-and-get-advice/

Great that #MEAction got it taken down. I looked up HealthDay to see if they had any relationship to SMC, which is expanding internationally (Australia, New Zealand, Canada, Japan, and rather horrendously, Germany in 2016), as HealthDay seems to carry out the same kind of function. I didn't find any connection, but does this look familiar to anyone? (from the meaction report above):

There was such a high participation rate with this action that HealthDay even complained about borderline “harassment”.

 

[Valentijn]

High volume = harassment? Maybe they should take the high volume as a sign that they're publishing blatantly flawed articles which anyone with a brain can see are incorrect.

 

[jimells]

What, may I ask, does their response about not being able to change tags on a PubMed document have to do with your point that the article is riddled with inaccuracies?

You may ask, but only if you want to be labeled a troublemaker, haha!

 

[jimells]

http://www.meaction.net/2015/12/03/we-succeeded-in-removing-nih-cbt-and-get-advice/

Great that #MEAction got it taken down. I looked up HealthDay to see if they had any relationship to SMC, which is expanding internationally (Australia, New Zealand, Canada, Japan, and rather horrendously, Germany in 2016), as HealthDay seems to carry out the same kind of function. I didn't find any connection, but does this look familiar to anyone? (from the meaction report above):

It's a small club. It it inconceivable that the HealthDay people (their website brags about how well-connected they are) do not personally know any of the VIPs on the Science Media Centre governing board.

It is quite scary to see how readily the 5000 (IIRC) websites that regurgitate HealthDay articles give up their editorial independence (and responsibility) for the convenience of adding officially approved material with a simple link on their webpages.

 

[ghosalb]

anyone looked at Wikipedia for ME/CFS.....CBT/GET got lot of ink.

 

[halcyon]

anyone looked at Wikipedia for ME/CFS.....CBT/GET got lot of ink.

Bias in published medical research is carried over to Wikipedia medical articles, by design unfortunately. With so little good biomedical research, and especially review articles, in the literature, little can be done to improve the current Wikipedia CFS article.

 

[SB_1108]

The info on the wiki page could easily be changed if someone wanted to 1) spend the time researching, referencing and editing the page. And 2) it were approved by the editors.

I've considered it a million times but my brain fog is so terrible that I would not make any sense.

 

[Invisible Woman]

Can't do too much about wiki but don't forget there's now:

http://www.me-pedia.org

So we can create, contribute to and correct info about ME.

 

[ghosalb]

Can't do too much about wiki but don't forget there's now:

http://www.me-pedia.org

So we can create, contribute to and correct info about ME.

Some people will probably go to Wikipedia first to learn about this illness....those are the people we need to educate...

 

[Esther12]

I remember reading that someone selling a book promoting mind-body solutions for CFS is also a wikipedia editor (sciencewatcher/David Jameson). From reading the talk page, he seemed to know how to play the wikipedia rules in a way which meant that what was true didn't really matter, what was claimed in a 'respectable source' did. It looked like some people were trying to make it more reasonable over there, but it seemed to be a lot of work learning arcane wikipedia rules, rather than being able to have a reasonable discussion about what the evidence shows. Thanks a lot to all those willing to put the time/effort needed into this gruelling task.

Because the researchers who developed CBT/GET have such low standards for themselves, and they keep claiming that CBT/GET being as useful as a placebo means that they're effective treatments, that means wikipedia claims that they're effective treatments.

 

[halcyon]

I remember reading that someone selling a book promoting mind-body solutions for CFS is also a wikipedia editor (sciencewatcher/David Jameson). From reading the talk page, he seemed to know how to play the wikipedia rules in a way which meant that what was true didn't really matter, what was claimed in a 'respectable source' did. It looked like some people were trying to make it more reasonable over there, but it seemed to be a lot of work learning arcane wikipedia rules, rather than being able to have a reasonable discussion about what the evidence shows. Thanks a lot to all those willing to put the time/effort needed into this gruelling task.

The Wikipedia rules are well meaning. In a perfect world it wouldn't be a problem. The problem is that the published literature on this disease (especially secondary sources like reviews, which Wikipedia relies on solely) is heavily biased towards psychological causes and treatments. The failing isn't with Wikipedia, but is with medical journals for poor peer review practices and heavy bias towards one theory.