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Worth noting is that the first author’s affiliation is King’s Healthcare Partners, which run a CFS clinic that is part of the NHS’ South London and Maudsley Trust (where Prof Wessely is based) and have recently hosted a conference on FND with 200 attending clinicians where they touted GET and...

I only ever met one person who had rheumatoid arthritis, an English woman who had moved to France with her family because she found better healthcare here. She said that when she has a rituximab injection, she feels so much better that she could go and run a marathon.

They know what they are doing — the second author of the article, Dr Barbara Dworetzsky, was a signatory of White’s paper about the “abnormalities” in the NICE ME/CFS guideline.

Yes, but Visser and van den Campen have shown that many people with a ME/CFS diagnosis have orthostatic intolerance without heart rate or blood pressure abnormalities - i.e. neither POTS nor orthostatic hypotension. These findings have been replicated by the Bateman Horne Center. Did you mean...

Summary thread on X / Twitter by one of the authors: Interestingly, after separating the patients into groups based on a proteomics analysis of their blood, they found that the IgG of one group induced delayed symptoms:

POTS.

This initiative is commendable especially given the recent cases of people with very severe ME being mistreated in the hospital. However, this document won’t solve the crux of the issue which is that ME/CFS diagnoses and the NICE guideline are being ignored, or even bypassed by changing the...

It is disappointing that sports medicine is only interested in touting its own horn instead of understanding post-exertional malaise and its pathophysiology. One would think that such a counter-intuitive response to exertion would pique the scientific curiosity of top doctors and researchers in...

Yes, I had a gastric emptying scintigraphy done last year to diagnose my gastroparesis. The images are all taken while standing up and this is a requirement in the recommendations of nuclear medicine societies on conducting a GES. There was no mention of my stomach being in an abnormal position.

The gold standard examination for diagnosing gastroparesis is the gastric emptying scintigraphy (GES), where pictures of the stomach while standing up are taken immediately after a test meal and every hour thereafter. Therefore, doesn’t a GES also allow for ruling gastroptosis either in or out...

Thank you - I’ll ask my GP when I see him on Friday.

The paywall has since been removed, presumably because the study was funded by the NIH (at least in part). Tachycardia after eating is a major issue for me even when I lie down. I have a particularly bad time with carbs, whereas fats and protein don’t seem to cause much of a heart rate increase...

I should also note that when I crash from eating too much, my stomach is particularly impacted. It feels like a heavy brick and digestion becomes even more difficult despite eating the same foods that I normally tolerate (and in the same amounts). Now that I’m a few days out of the surgery, I...

I hadn’t been made aware of this so I don’t know if this editor’s note came about based off of my reanalysis or someone else’s report, but I’m glad that it has been added. Thank you for posting about it.

I have just had a surgical intervention for my gastroparesis named G-POEM (gastric per oral endoscopic myotomy), which consists in cutting off a part of the pyloric valve that lets food pass from the stomach to the small intestine. While the surgery went well and was not painful, my digestion...

Some people may prefer homeopathic or other folk remedies, but why should preference matter if a treatment is not effective to begin with?

As a note, I have skimmed through Jeannette Burmeister’s blog post but it does not seem to be addressing in depth the methodological concerns as they are being discussed here and which are the ones I’d like to know about.

I have been out of the loop for a while so I have not read (and am not currently able to) the two long threads on the forums about the NIH study and the use of the EEFRT questionnaire. Have there been posts in those threads that have attempted to summarize the criticisms made so far, or perhaps...

The interesting takeaway for me is that this is evidence that contradicts the argument from the opponents to the NICE guideline that GET can be offered because it isn’t done with fixed increments in clinical practice (i.e. the PACE trial version of GET as described in the guideline) — this trial...

#MEAction have released their analysis of the study: https://www.meaction.net/2024/02/29/meaction-nih-study-response/