UptoDate gets SEID Treatment Very Wrong.

Remy

Administrator
This is a pretty crappy article from UptoDate...anyone with the energy might want to write to their editorial board and let them know what they think about it...editorial@uptodate.com

http://www.uptodate.com/contents/treatment-of-systemic-exertion-intolerance-disease-chronic-fatigue-syndrome


TREATMENT
Many therapies have been tried in systemic exertion intolerance disease (SEID), also known as chronic fatigue syndrome (CFS), but only counseling therapies (eg, cognitive behavioral therapy) and graded exercise therapy appear to produce meaningful benefit [1-5]. A systematic review of 35 randomized trials evaluating therapies for SEID/CFS concluded that counseling therapies and graded exercise therapy may have benefits for some patients with SEID/CFS [5]. However, neither of these modalities is curative. There is no known specific medical therapy forSEID/CFS. Patients and their clinicians should be circumspect about trying potentially dangerous and often expensive regimens.

Cognitive behavioral therapy — Cognitive behavioral therapy (CBT) has been effective in patients with SEID/CFS and may be useful in those with idiopathic chronic fatigue [6-9]. This approach typically involves a series of one-hour sessions designed to alter beliefs and behaviors that might delay recovery. In a trial, 641 patients with SEID/CFS were randomly assigned to receive CBT, graded exercise therapy, or adaptive pacing therapy, which involves helping the patient to plan and pace activities to reduce fatigue; all patients also received specialty medical care [9]. Patients received 14 sessions of therapy during the first 23 weeks, and an additional session was offered at 36 weeks. When assessed at 52 weeks, CBT in combination with specialist medical care was associated with less fatigue and better physical function compared with specialist medical care alone. Graded exercise therapy led to similar benefits, but adaptive pacing therapy did not.

Similar findings were observed in a randomized trial that compared CBT with relaxation training in 60 patients [7], and the benefit persisted at five years following the intervention as assessed by an interviewer who did not know to which original group the patient had been assigned [8].
 
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Remy

Administrator
How do you convince them they're wrong when they have that many citations. @_@
Tell them that their citations are wrong and 25 years out of date...:) It's quality, not quantity that counts!

But maybe someone who has the energy, could write a nice template summary and post it here for people to cut/paste from when crafting their own response? I know some people are much more familiar with the appropriate studies and criticisms than I am...
 

Seven

Well-Known Member
If we do not wake up as a community this is our future,. It is not coincidence, let the campaign continue. Now they will inundate the searches of the new name tied up with PACE.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
There is a sllver lining in this - they are ever more and more qualifiying the effects of CBT/GET. Notice that they say "may" and "some" and they note that they are not curative....Thank god for that.

A systematic review of 35 randomized trials evaluating therapies for SEID/CFS concluded that counseling therapies and graded exercise therapy may have benefits for some patients with SEID/CFS [5]. However, neither of these modalities is curative.

On the other hand then they talk about recovery! and cite the PACE trial and this one weird study where CBT/GET has almost magical properties - the positive effects persisting five years later.

This site is a big problem because apparently it is used by many physicians to get "Up to Date"

This is a pretty crappy article from UptoDate...anyone with the energy might want to write to their editorial board and let them know what they think about it...editorial@uptodate.com

http://www.uptodate.com/contents/treatment-of-systemic-exertion-intolerance-disease-chronic-fatigue-syndrome
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
ath
There is a sllver lining in this - they are ever more and more qualifiying the effects of CBT/GET. Notice that they say "may" and "some" and they note that they are not curative....Thank god for that.

A systematic review of 35 randomized trials evaluating therapies for SEID/CFS concluded that counseling therapies and graded exercise therapy may have benefits for some patients with SEID/CFS [5]. However, neither of these modalities is curative.

On the other hand then they talk about recovery! and cite the PACE trial and this one weird study where CBT/GET has almost magical properties - the positive effects persisting five years later.

This site is a big problem because apparently it is used by many physicians to get "Up to Date"
This is why we need to get Ampligen approved by the FDA. If that happens Up to Date will have to include it. I actually don't think Ampligen is that far from being approved...

The reason CBT/GET get so many citations is that the UK and Netherlands have stacked the deck with them by pouring so much money into studies. Nothing else has gotten a fraction of the resources that these treatments have.

http://www.healthrising.org/blog/2015/11/11/chokehold-behavioral-treatments-chronic-fatigue-syndrome/

I wonder if the UK is laying off funding CBT/GET trials a bit after the PACE debacle?
 

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