UpToDate ME/CFS information

These sorts of guidelines are a design by committee and I suspect there are some steadfast CBT/GET supporters involved.

 

You are correct... the first 2 on this list.

Clinical features and diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome
Author: Stephen J Gluckman, MD
Section Editor: Anthony L Komaroff, MD
Deputy Editor: Jennifer Mitty, MD, MPH​

The third is an infectious disease doc who seems to know her own field, but is too trusting of the poor quality studies which litter the history of ME/CFS. Not all "evidence" is equal.

UpToDate editorial assumed they had addressed my concerns in the ticket I opened last June. They simply closed my ticket and didn't even bother contacting me about it.

I just emailed them that I am not satisfied and to reopen my ticket. I'm focusing on just their support for GET, as that's the real battle here.

Besides CDC/AHRQ/NIH, I can now tell UpToDate that their competitor, Healthwise, has stopped recommending GET, and that Kaiser Permanente is in the process of rejecting GET. I hope they feel alone in their support of GET, because that is rapidly becoming the reality.

PS: UpToDate, in addition to the irony of its own name, has so many good slogans that the jokes write themselves.

• "The medical information resource doctors trust."
• "We are committed to continuous improvement and innovation."
• "We’re responsible for the right results."
• "We learn from customers and provide solutions that support them best."
• "We treat our customers with honesty and respect."
• "We demonstrate personal and professional integrity: we set high standards for ourselves in all we do."

 

Thank you @Webdog for your persisting efforts. You are doing great work!

 

On a humorous note, UpToDate will be providing clinical support information for NASA astronauts in outer space. Hope none of them come down with ME/CFS.

https://www.mobihealthnews.com/content/nasa-pilots-uptodate-clinical-support-tool-outer-space

 

Seems that they got 'uptodate' just the day before it was announced Cochrane are withdrawing their CFS exercise review. Time to start all over again?

 

I'm trying to push both the Cochrane withdrawal and the latest Vink paper on PACE GET.

But I'm getting shut out by UpToDate. I can get ahold of customer service, but editorial isn't returning my emails or phone calls. Even though I'm actually a paid subscriber (for another 4 days).

 

Thanks for trying. Maybe they feel like they've just done a re-review, and don't want to go through it all again... but they're called UpToDate!

 

Sent off a few emails to Wolters Kluwer corporate to make them aware of the situation, but I think that's about the end of this. I'm not likely to ever to change the minds of Komaroff and Gluckman, who have both pushed GET/CBT for more than a decade.

It also probably doesn't help that Wolters Kluwer is based in the Netherlands.

 

@Webdog how much is the subscription? I wonder if we could crowdfund for you to keep this membership?

 

Got a ping back from a higher up in Wolters Kluwer legal. He pulled up my old case # from June, and said he would escalate the issue. Cautiously optimistic. Perhaps a fresh set of eyes looking at this will help.

 

Appreciate the offer, but it's cheap enough with the patient discount that I can easily afford another month if needed.

 

I'm learning that Wolters Kluwer is a huge international conglomerate, and each division has its own CEO. They also seem to value their corporate reputation highly. Hopefully all this attention is making it uncomfortable for little UpToDate.

 

Let us know if you do, though because these memberships all add up. You are doing great work and i feel you shouldn’t have any barriers impeding in what you do.

 

Hi Webdog. Thank you very much for your wonderful advocacy.

So, just to ask, and clarify Dr. A. Komaroff is in support of GET and CBT for ME?

Did I get that right?

Thanks again.

 

Komaroff is the editor for this UpToDate content, which has pushed GET/CBT and cited PACE as evidence for years. The recommendation for GET has been downgraded, but it’s still there. As is citing PACE as evidence.

Gluckman is listed as the actual content author.

I don’t know the history as well as others, but in digging through the archives of the Medical Board of California, I found a 1999 presentation by Komaroff on CFS where he explicitly recommended GET/CBT.

I have made attempts to contact both Komaroff and Gluckman, but never received a reply.

 

Thank you very much Webdog for your detailed reply. And, again, for all your work and determination!

If GET and CBT are recommended for "some" with ME, then we can see this is still going to be recommended for all - or at least mild to moderate cases. How does a health care provider, believing in the BPS point of view pick and choose who it may "benefit", and who will not benefit? Saying GET and CBT may benefit some, will still mean give it a try for many.

 

Its a divide and conquer tactic, as you say if it works for some and all have the same disease then it would work for all.
Its also a way to alleviate cognitive dissonance, avoiding the need to reject what was previously gospel.

 

The AHRQ found that when only stricter case definitions were used, and "fatigue" (Oxford) studies were thrown out, the evidence for GET vanished. UpToDate does acknowledge the AHRQ findings. But UpToDate seems to acknowledge everything... good and bad.

UpToDate seems persuaded no one really knows what CFS is and that looser definitions are just as valid as stricter definitions in "a complicated disease characterized by unexplained, persistent, and relapsing fatigue." Also, UpToDate seems to accept studies with subjective outcomes in the absence of any objective markers. But that is a whole other thread unto itself.

Also, since different countries disagree on GET/CBT, UpToDate continues to cite guidelines that still recommend these treatments.

Somehow I need to convince UpToDate that

1. for patients exhibiting PEM, there is no evidence for GET and
   
2. PEM is a required symptom for ME/CFS

I don't know how this will play out so long as NICE continues to recommend GET. But the temporary withdrawal of the Cochrane review does give me a new way to challenge UpToDate.

 

The Canadian Consensus Criteria and the proposed International Consensus Criteria require PEM and they supersede the Oxford criteria which has been proven to include depression (though i don't have a reference handy).
It may be worth asking them why they want to use obsolete criteria to have several diseases mixed in which happens in no other disease which would make advice meaningless especially since we can now separate them an each needs a different treatment.
Does @dave30th have a moment to throw in some thoughts?