UpToDate ME/CFS information

As an aside, Komaroff is an editor for UpToDate's CFS content, which still promotes CBT/GET. The content screenshotted below was "last updated: Apr 10, 2018."

https://www.uptodate.com/contents/t...yndrome-systemic-exertion-intolerance-disease

 

have you got them on your list of websites you're challenging about CBT/GET @Webdog ?

 

Haha, you know me too well.

I have previously (unsuccessfully) complained to UpToDate about their CFS content. I fired off another message to them this morning.

If anyone else wants to do similar:

UpToDate's Editorial Policy: https://www.uptodate.com/home/editorial-policy
End User Support Contact Page: https://www.uptodate.com/home/contact-us#end-user-support
Email: customerservice at uptodate.com
Phone: 1-800-998-6374 or +1-781-392-2000 Monday through Friday, 7 a.m. – 9 p.m. (Eastern)​

 

do you reckon it could be worth writing to Dr Komaroff himself??

 

I'm sure it is. The more letters the better. I'm a quantity over quality kind of advocate (I just send lots of letters and don't spend a lot of time getting them perfect).

 

Got a quick note from UpToDate regarding their CFS page. I had asked them to 1) change the name of the disease to ME/CFS, and 2) remove the recommendations for GET/CBT. I felt these were the most glaring issues.

@NelliePledge

 

@Webdog looks like another win then

 

Again, I have mixed feelings about Komaroff.

 

Revisiting UpToDate again. After a strongly worded message yesterday, I got a ping back today.

I requested UpToDate remove the old inaccurate ME/CFS content until the new content is available.

 

Great work @Webdog

 

UpToDate
I think he is newly listed because he’s in the process of revising it. Someone else can likely say more.

Hopefully they’ll have removed Gluckman, who seems to be incapable of sifting through the research problems in this area, when the revision is done.

 

That's what Dr. Komaroff has said. He was added as a section chief at the point that he agreed to work with them. UpToDate's last update incorporated info about the criticisms of the PACE trial and Oxford definition and AHRQ's decision to downgrade CBT and GET but then inexplicably still recommended CBT and GET.

Gluckman is also the author on the Merck Manual guide which also recommends CBT and GET. - https://www.merckmanuals.com/profes...nic-fatigue-syndrome/chronic-fatigue-syndrome

Before July 2018, that said "Cognitive-behavioral therapy and a graded exercise program are the only interventions proven helpful" but now says that they may help some people.

 

Noticing some changes on the UpToDate website. There is no longer any mention of GET/CBT the front page. The article, however, still uses the bizarre term "CFS/SEID".

https://www.uptodate.com/contents/c...yndrome-systemic-exertion-intolerance-disease

I don't have an UpToDate subscription, and am trying to figure out if my wife has access through work. If not, I'll probably pay for a 30 day sub to read the full article and give further feedback.

 

Thank you, so I misunderstood it.

 

I'll simply say it's not Komaroff and it's not Gluckman doing the updates and responding to my emails.

 

Interesting. Glad you’re mailing them, whoever they are.

That’s a small improvement but an odd conclusion as there’s some evidence that it doesn’t help anyone, even ICF. Better to not advertise these at all, IMO.

 

This is essentially what Healthwise said (in addition to citing NICE guidelines) when they downgraded GET/CBT, but didn't remove them. Healthwise asserted GET/CBT anecdotally remained helpful for some patients, and didn't want to completely remove this treatment option.

It took another year before Healthwise agreed to completely remove GET/CBT from their ME/CFS content (and we still only have their promise that it will happen this fall).