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

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

31,000 views. (07/12/19)....
65,000 views. (07/24/19)

https://jamanetwork.com/journals/jama/fullarticle/2737854
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rvallee said:
With just above it a "trending" Exercise Therapy May Benefit Chronic Fatigue. :sick:

Although that the best that can still be said at this time is "may", after 3 decades of insisting it would, is a serious indictment of how poor and aimless this body of research is. "May" is simply not the basis for guidelines, practices and policies and this disconnect is a serious problem.
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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.
 
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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.
 
chrisb said:
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.
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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.
 
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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

“Over the last 35 years, there have been over 9,000 scientific publications that compare people with the illness to healthy people of the same age and sex,” explained Anthony Komaroff, a professor at Harvard Medical School and senior physician at Brigham and Women's Hospital. “And they find a whole variety of abnormalities.”
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Can someone tell me how to get the Komaroff article--Can't get it from JAMA or SCIHUB--thanks

Got it, thanks.
 
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To clarify for those who, like me, were confused by the AfME tweet above, Dr Mark Guthridge summarised Dr Komaroff's article for AfME's magazine.

So much of the information in the summary is wrong or at least inadequately supported by facts. I'm surprised to see Dr Guthridge disseminating it.
e.g.
People with M.E. have deficiencies in three organs important for the body’s hormonal balances called the hypothalamic-pituitary-adrenal axis.
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Hutan said:
To clarify for those who, like me, were confused by the AfME tweet above, Dr Mark Guthridge summarised Dr Komaroff's article for AfME's magazine.

So much of the information in the summary is wrong or at least inadequately supported by facts. I'm surprised to see Dr Guthridge disseminating it.
e.g.
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found it
this is the original twitter thread; I'm guessing that someone at AfME just put a list together

 
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MSEsperanza said:
Even with somewhat interested and unerstanding doctors, also in clinics, I rather experienced that they didn't find such reviews helpful. And for the less understanding doctors reviews of this sort only reassured them that all 'proof' of biomedical etiology is unsound and exeggerated. In their view my alleged focusing on this research only proved that I have a somatization disorder.

What gives me hope are reviews of potential pathophysiologies, clearly formulated as hypotheses and also poining out that there haven't been found until now objectivley measurable biomedical abnormalities that can differentiate pwmE from healthy people.

I think sentences like "A general downregulation of the hypothalamic-pituitary-adrenal axis is seen in patients with ME/CFS" are misleading. Or have I missed something? Is there a proven downregulation in the hypothalamic-pituitary-adrenal axis in a majority of pwME?

Regarding the diverse brain imaging studies over the last decade, I have the impression that all the findings cannot be integrated into a common picture of abnormalities.

As to the more recent findings of Ron Davis' teams around "something in the blood" I think it's good to point to these observations as promising research. However it seems to me also important not to exaggerate the evidence.

One of EUROMENE's recent papers seems to me a good and realistic approach to review the biomedical research on ME:
Scheibenbogen, Carmen; Freitag, Helma; Blanco, Julià; Capelli, Enrica; Lacerda, Eliana; Authier, Jerome; Meeus, Mira; Castro Marrero, Jesus; Nora-Krukle, Zaiga; Oltra, Elisa; Bolle Strand, Elin; Shikova, Evelina; Sekulic, Slobodan; Murovska, Modra (2017), "The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE", Journal of Translational Medicine, 15: 162, doi:10.1186/s12967-017-1263-z

And a publication that gives me some hope is this paper from 2016:
Jonathan C.W. Edwards, Simon McGrath, Adrian Baldwin, Mark Livingstone, Andrew Kewley. (2016) The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem. Fatigue: Biomedicine, Health & Behavior 4:2, pages 63-69,
https://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598

I realize that regularly updating such reviews might be exremely strenous and less interesting work. I think it could be very helpful as a basis for decisions regarding further research, though. Maybe it could also convince outsiders that scientifically sound biomedical research on ME does exist.

[Edit: 'scientifically sound' meaning reporting what was investigated, found and not found in a clear and reasonable manner an not exeggerating the evidence.]
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Many thanks for sharing your view and thinking.

I was wondering if you'd had your interest and curiosity piqued by any more recently published summaries?
 
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