JAMA -"Advances in understanding the Pathophysiology of Chronic Fatigue Syndrome" by Anthony Komaroff

I am glad you included and repeated the need in your comments.

 

I have been saying this everywhere for, idk, years.

Good others are, too. More voices means more chances they listen.

 

Yes! And a strategic plan that is focused on delivering outcomes for patients as rapidly as possible and is not constrained by a 10 or 20M budget

 

Well, now "trending" above it is...

Biomarker Test for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

[I suspect "trending" is just a matter of cycling through other articles with "chronic fatigue" in the title.]

 

The Norwegian news site about research Forskning.no has written an article about ME based on Komaroff's JAMA article. They also emphasise that NHS and CDC have completely different approaches to ME. NHS recommends GET/CBT while CDC has removed those recommendations and advice patients to instead avoid crashes in order to keep more stable. The article is written by a journalist who has covered some ME research before and also the PACE debate.

Forskning.no: Kan ME skyldes et gammel biologisk krisetiltak?
google translation: Can ME be caused by an old biological crisis response?

When doctors examine ME patients with typical laboratory tests, they often do not find much out of the ordinary. Such are the results of several studies.

But in recent years, the picture has expanded, according to researcher Anthony Komaroff, who recently summarized some of the news in an opinion piece in the JAMA research journal.

A major effort from the US National Institutes of Health (NHI) has laid the groundwork for many new research projects, which are now beginning to yield results, Komaroff writes, concluding:

It is now clear that people with ME have many abnormalities in the body, compared to healthy people.
The results point to differences in both the nervous system, the hormone system, the immune system and the energy conversion in the body.

 

Dr. Komaroff's online article in JAMA currently has about:

31,000 views. (07/12/19)
35,000 views.
42,000 views.
47,000 views.
65,000 views. (07/24/19)
70,840 views. (08/12/19)



https://jamanetwork.com/journals/jama/fullarticle/2737854[/QUOTE]

 

haven't read this whole thread so sorry if already mentioned by someone.

https://twitter.com/user/status/1173064566370164736


https://twitter.com/user/status/1173049189451874304

 

That advice from Komaroff about increasing exercise seems strangely at odds with the state of his knowledge and understanding in 1993 at the CIBA Conference when he was clearly of the view that

In our experience, 80% of patients with CFS have an exceptional post-exertional malaise......Typically the patient tolerates the physical exertion reasonably well, and may even feel energised during and immediately after the exertion. However 6 to 24 hours later the patients feel ill...

It is hard to see why increasing exercise would help such people.

 

If UpToDate is any indication (Komaroff is editor), then the belief remains that GET is helpful for a subset of CFS patients. Even though PACE has been largely rejected, and the potential for harm in some patients is recognized.

From my conversations with Healthwise, there are anecdotal reports of ME/CFS patients benefiting from GET, and there is a reluctance to remove the option for doctors to prescribe GET when they think it's appropriate.

Edit: There is also (unofficially) a belief within the CDC that explicitly stating GET should not be prescribed may result in patients using it as an excuse to not exercise at all. I only heard this said once, but it was from very high up in the CDC. If true, this lack of trust in patients is unfortunate.

 

Of course, CFS covers so many things that it is possible to be given this diagnosis without any of the cardinal ME symptoms so CBT and GET may help them. Remember that in at least one of the CDC's phone trials some people had not realised they were ill.

 

Article in Abilitytoday
Thousands of Studies Paint New Picture of Chronic Fatigue Syndrome – WCAI
https://abilitytoday.com/thousands-of-studies-paint-new-picture-of-chronic-fatigue-syndrome-wcai/

links to full article here
https://www.capeandislands.org/post...new-picture-chronic-fatigue-syndrome#stream/0

 

Moderator's note: this post as been moved from this thread.
https://twitter.com/user/status/1179389479385227265

 

Can someone tell me how to get the Komaroff article--Can't get it from JAMA or SCIHUB--thanks

Got it, thanks.

 

found it
this is the original twitter thread; I'm guessing that someone at AfME just put a list together

https://twitter.com/user/status/1148875181944795136