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In terms of clinical significance, nil of note. Two potentially useful findings that need to be followed up are the IgG mouse transfer and the muscle stuff from Wust.

This case series reports on use of ECT in four people with difficulty swallowing (one case also mentions gastroparesis and severe weight loss). However, these issues occurred in the context of late life depression. https://www.ajgponline.org/article/S1064-7481(21)00519-4/abstract

Letter from Whitney Dafoe to Karen's hospital. Largely echoes the points people have been making on the Maeve inquest thread. https://www.whitneydafoe.com/mecfs/?post=dear-nhs-don-039-t-kill-karen-gordon

Spread huge libellous lies, quietly issue a correction two years later.

This seems to be the essence of the typical Reddit-level doctor understanding of ME/CFS and similar conditions. Some BPS researchers would go a step further and try to postulate internal mechanisms like central sensitisation that allegedly explain why normal bodily sensations are being amplified...

There is no extreme fatigue, widespread pain or any other symptom. It's all just misperceptions of normal bodily sensations that everyone gets. The symptoms aren't real. People with moderate and severe ME/CFS mostly live inside their homes. Some leave the house only to go to medical...

Fear avoidance. The ME/CFS person knows that if they engage in activity, they’ll get muscle aches, huffing and puffing and red in the face. They are so freaked out by these normal responses to activity that they avoid all activity.

https://meassociation.org.uk/2024/08/explaining-electrophysiological-properties-of-cells/

I wish. The NIH posted this study on their twitter feed and the interpretation from healthy trolls in replies was along the lines of "of course all their lab tests are normal, it's a psychological condition".

NIH press release here: Routine lab tests are not a reliable way to diagnose long COVID My goodness. They needed to waste time and money figuring this out? If routine blood tests could diagnose ME/CFS aka Long Covid, we wouldn't be here.

These delusions of having control over your own health are feeding into societal ableism and abuse towards us. Healthy people assume that those of us who are unhealthy didn't take care of our health, didn't work out etc. As if any of those things matter. You contract a virus and never recover...

Yes but the gastroenterologist will be just fine. It's the families, particularly the mothers, who will get brutalised by the state when something goes wrong.

Yep. They can dismiss survey evidence of worsening from GET as anecdotal. I would think that such legal action currently has no hope of success. The majority of people were harmed by GET when GET was the standard of care. Although the NICE guidelines have been updated, there is currently no...

I'm seeing this more and more on social media. Risky. Leaving aside the issue of whether this is real or not, pursuing unconventional treatments, especially surgical treatments, that are not recognised by mainstream medical authorities in your country could result in the parent and the child...

Being a young woman, gastroenterology will try to diagnose you with a fake eating disorder no matter what's wrong. It happened to me when I was a couple of years older than her and my gastroparesis started. I wasn't even underweight.

Yep. The MDT concluded it was functional and this explains everything that followed, including the “inexplicable” reluctance to try anything else and extreme statements like TPN will definitely cause sepsis and make your stomach atrophy from misuse. This killed her and they all got away with it.

When I had Covid again this year, the chronic symptoms of gastroparesis, nausea and vomiting flared up by 100x.

Uh, the symptoms are exactly the same. Every public utterance by this guy has been frightening. Since no one at the NIH has disavowed any of his unhinged statements about us, I take that as a sign that he represents the majority view there.

Yes, exactly. It's a widespread problem in ME/CFS advocacy. Objective facts like patients being mistreated in hospitals or CBT/GET being ineffective are often paired with dubious claims about causation and treatment. We see this all the time from well-meaning doctors who advocate for us on...

It appears that Strain alleges that death from malnutrition in ME/CFS is much more common than we thought. Unfortunately, he's right about there being no evidence-based treatment for OI in ME/CFS. The information contained in Weir's letters would have been dismissed as quackery by the NHS...