UpToDate ME/CFS information

One more thing. UpToDate does not mention the AHRQ's findings regarding GET harms.

Instead, UpToDate apparently thinks that lack of harms reporting indicates lack of harms.

 

Maybe this info will help?


“The Oxford criteria for chronic fatigue syndrome were used to assess graded exercise therapy (GET) and also for the Cochrane analysis (132). The Oxford CFS criteria do not exclude patients with psychiatric disorders: depressive illness, anxiety disorders and hyper-ventilation syndrome. It is known that depressed patients improve with activity. ME/CFS is a physical illness with post-exertional malaise. As a result of including patients with depression in the Oxford studies, the studies erroneously concluded that CFS patients improve with GET. Patients with ME/CFS have documented PEM on 2-day bicycle ergometry testing. Therefore, GET is contraindicated and can be harmful for patients with ME/CFS using the CCC criteria (82,84-86.129, 133, 134).”

Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians; page 225:

https://pdfs.semanticscholar.org/fac4/1d5e15e637bb32911dba00a7aae603f8f867.pdf


Oxford criteria found to have an 85% error rate.

“ Results: The Oxford criteria designated CFS in 25.5% of 2004 males and 19.9% of 1954 females. Based on quadrant analysis, 85% of Oxford-defined cases were inappropriately classified as CFS. Fukuda criteria identified CFS in 2.3% of males and 1.8% of females.

Discussion: CFS prevalence using Fukuda criteria and quadrant analysis was near the upper limits of previous epidemiology studies. The CFSQ may have utility for on-line and outpatient screening. The Oxford criteria were untenable because they inappropriately selected healthy subjects with mild fatigue and CIF and mislabeled them as CFS.” https://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1353578

 

When a clinical criterion is several standard deviations worse than a coin toss, it's... evidence-based science! Apparently.

They're really not considering how absurdly bad this will all look with hindsight.

 

UpToDate has informed me "We will pass along your comments to the appropriate physician editor for their review and consideration."

So I guess I wait. But I don't see any sense of urgency from UpToDate, nor do I have any way of knowing who the "appropriate physician editor" is or how to contact them.

 

Just noticed there is a Nov 2, 2018 revision to the "Treatment of myalgic encephalomyelitis/chronic fatigue syndrome" section. I'll renew my sub and have a look at it later and see what has changed. The "Clinical features and diagnosis" section remains unchanged. But it's the treatment section that has been citing PACE/Cochrane and recommending GET/CBT.

 

I’ve had a glance at the latest (Nov 2) UpToDate changes on ME/CFS treatment.

Still, recommendations for GET/CBT for some patients. In a nutshell, their position is this:

• Exercise is important for all CFS patients
• GET/CBT may benefit some patients
• GET/CBT may worsen PEM and other symptoms in some patients
• PACE has methodological flaws, but we still consider it evidence

A couple quotes:

• "Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a complicated disease characterized by unexplained, persistent, and relapsing fatigue."
  
• "CFS is inherently difficult to study because there is no international consensus on the case definition."

The inability of UpToDate to properly differentiate between fatigue and stricter ME/CFS definitions that include PEM, even after having it repeatedly pointed out to them, is quite frustrating.

But with the US elections tomorrow and some time-sensitive Kaiser documents I have to review, it might be a couple days before I can properly go through this UpToDate update.

 

And Up-to-date's advice may be up-to-date and it may be accurate.

Has methodological flaws but is still good evidence is just bonkers.

 

Since UpToDate is accredited to provide continuing medical education (CME) with the Accreditation Council for Continuing Medical Education (ACCME), I've filed a complaint with ACCME. They haven't decided yet whether to pursue it or not.

My complaint is that UpToDate's ME/CFS treatment recommendations (GET/CBT) are in disagreement with both US government health agencies as well as existing ACCME-accredited CME materials (the Unrest CME materials). I pointed out the absurdity of having 2 different ACCME-accredited ME/CFS CME materials in complete disagreement in their treatment recommendations.

 

My complaint to the Accreditation Council for Continuing Medical Education (ACCME) will not be pursued.

 

Damn
Is there an appeal available?

 

My continued interest in UpToDate in part stems from my realization that

No, there is no appeal process as they decided not to pursue

I filed that UpToDate was in violation of ACCME's CME Content Policy. But there is nothing preventing others from filing complaints.

http://www.accme.org/accme-complaint-form

 

I totally understand and i wish i could cognitively do what you do

 

Thank you for trying, @Webdog. Was that all that they said?

 

A copy of the reply.

 

I know that the whole ME/CFS section was rewritten last year, but I am no longer well enough to go through it. It would definitely be worthwhile to see what changes have been made.

 

Browsing Reddit forums where physicians talk amongst themselves has impressed on me the considerable influence that UpToDate has on US medical practice. Physicians here seem to consult it often and trust it implicitly.

The site is paywalled so I can’t verify the current content of their ME/CFS pages, but if it’s as it was, I think it’s causing a lot of harm here and fixing it should be a priority for US advocates with the requisite skills and energy. I applaud Webdog for his effort.