Perspective: Drawing on Findings From Critical Illness to Explain ME/CFS, 2022, Stanculescu, Bergquist

There's an awful lot to unpick in this paper. Taking one statement pretty much at random:

I don't know that people with ME/CFS have issues with ACTH release - I had an ACTH stimulation test and it was fine. But, setting that aside for now, what's in this suggestion of adrenal atrophy in ME/CFS?

This is the study that is referenced - 147.
Scott LV, Teh J, Reznek R, Martin A, Sohaib A, Dinan TG. Small adrenal glands in chronic fatigue syndrome: a preliminary computer tomography study. Psychoneuroendocrinology. (1999) 24:759–68. doi: 10.1016/S0306-4530(99)00028-1
I made a thread for it here:
Small adrenal glands in chronic fatigue syndrome: a preliminary computer tomography study, 1999, Scott et al

You can read the abstract of that study for yourself, but basically the authors screened people in a fatigue clinic until they found 8 with abnormal results to an ACTH test. Then they compared the adrenal glands of those 8 people with 55 healthy controls, and found that they were smaller. The fact that these people had abnormal ACTH test results suggests that they have medical problems that might easily account for their fatigue - and so probably did not actually have ME/CFS.

I don't believe Stanculescu and Bergquist should be quoting this study - I don't think it says anything about people with ME/CFS.

And that's just one statement, as I said, picked almost at random. There may be good points in this paper, but it looks as though the authors should have applied more rigor in their selection of arguments and references. Some readers will latch onto HPA axis issues and not look any deeper. Others will examine a few claims and, when the claims aren't solid, give up on the paper.

 

Open Medicine Foundation (OMF)

So, this is not just another speculative paper from a researcher who doesn't matter. This represents the thinking of OMF's Chief Medical Officer, who will, presumably, have a significant say in what research is funded by OMF.

 

It's possible to make a comment on the study - you just have to register. Clearly, we can't just sit back and wait for OMF to solve ME/CFS for us.

I left this one:
The authors rightly point out that ME/CFS has suffered from a lack of research investment. While speculation is therefore an unfortunate necessity, it should be as soundly based as possible if scarce research funds are not to be wasted.

For example, the authors say "Moreover, suppression of ACTH release would explain why in a small study ME/CFS patients were found to have 50% smaller adrenals than controls (147), resembling adrenal atrophy in prolonged critical illness." The study referred to is "Small adrenal glands in chronic fatigue syndrome: a preliminary computer tomography study", 1999, by Scott et al. Patients attending a fatigue clinic were screened until 8 were found with abnormal ACTH test results. The adrenal glands of those 8 people were then compared with 55 healthy controls, and it was found that those of the 8 people were smaller. The fact that these selected people had abnormal ACTH test results suggests that they had other medical problems that might easily account for their fatigue - and so probably did not actually have ME/CFS. The paper is not evidence of adrenal atrophy in people with ME/CFS and it should not have been presented as such.

With no disease biomarker, and a poor understanding of ME/CFS diagnosis among many clinicians, the ME/CFS literature has many traps for the unwary. Hopefully those researchers in a position to direct the future of ME/CFS research, as these authors are, will not let their enthusiasm for a hypothesis cause them to overlook fundamental flaws in much of the existing literature, particularly that related to cortisol levels and the HPA axis.

 

(For those wanting more information about that Phelix bacteriophage test, we have a thread on it:
New Phage based test for borrelia)

 

Welcome to the forum @katrinapears. It's good to have you here.

Here's the MEA weekly research roundup (8-14 2022) by Katrina on this paper, as well as a link to a commentary on a previous paper by DS (11-17 Dec 2021).

https://meassociation.org.uk/2022/03/research-roundup-me-cfs-research-published-8-14-march-2022/
https://meassociation.org.uk/2021/12/research-roundup-me-cfs-research-published-11-17-december-2021/