Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

You’re not! They went beyond the evidence, as usual..

 

I agree with your analysis.

Though the evidence for ME/CFS being psychogenic is laughable, and further I believe on the balance of probability it is more likely to be a biomedical condition, until we have a clearer understanding of the aetiology the current associated physiological abnormalities are correlations, which, as we have to continuously point out to the BPS lobby, is not alone proof of causation.

 

I agree, I would not have signed this. I think it is a pity that one or two people who should be pushing a rigorous science approach have done so. It misinforms patients as well as being a weak counterargument.

 

Oh that hits the spot. Really like the dig to Wessely, and I'd even link to his text.

 

Thank you. Concerned about linking to Wessely directly as I haven't included other references. May just leave as a reference for those in the know

 

love that, so true!

 

I appreciate the need for rigour but I think you’re being too sceptical here. PEM has been demonstrated as a measurable biological phenomenon in 2-day CPET in multiple studies that show day one performance could not be repeated on day two. A drop in performance at the anaerobic/ ventilatory threshold is a set biological point independent of effort or illness beliefs. In some studies patients with ME/CFS had a drop in performance at the anaerobic threshold of between 20-30% percent while normal sedentary controls were able to replicate their day one performance.

 

Excellent tongue in cheek comment that will surely fly over the editors heads but make a lot of the ME community chuckle.

 

I think there are significant limitations to those findings:
https://www.s4me.info/threads/the-biggest-2-day-exercise-study-blog-me-cfs-skeptic.40267/The biggest 2-day exercise study - Blog ME/CFS Skeptic | Science for ME

 

I don't think se can say that a CPET measures PEM. It measures a shift in cardiorespiratory function in some cases but that is not what we mean by PEM. It might be linked but nobody really knows.

I think we have a problem with some researchers trying to push the idea that the CPET measures PEM. It may be putting researchers off the scent and it may be misleading patients quite badly. I recently had a comment from a researcher with an interest in CPET who seemed to be more interested in validating social support and insurance claims than in scientific validity. As I see it unless we stick to actual science we are likely to end up stuck in the same dead ends that ME/CFS research has been in for a long time.

 

Pretty sure I submitted it but the site was glitching a bit so not 100% sure.

 

@V.R.T. your response has been published:
https://www.bmj.com/content/389/bmj.r977/rr-18

Good work

 

Its heartening to see it in print so quickly. I doubt it will make much of an impact but it feels important to have it there. Unfortunately I left my name etc on the end of the text when I copied it over so it appears twice at the end of the article!

 

"They explain that fatigue after activity doesn’t necessarily mean that this is dangerous or indicate “a lack of energy in the body.” A gradual, controlled approach to increasing activity is an important part of rehabilitation.6"

These people have no idea what PEM is. If you have no idea what PEM is, you have no idea what ME/CFS is.

 

Well done - it's a great letter, and I'm so sorry for your truly horrible experience.

 

I agree, it's great letter @V.R.T. Thank you so much for writing it.

 

precisely

agree. i think it one of the best, am grateful for it

 

@V.R.T. well done for getting your powerful rapid response in.

I had worried that the BMJ might respond just to the external trappings of academia and reject your letter because it was not referenced, even though your informed personal account is as valid or even more valid than much of Miller et al’s content.