Search results

This approach presupposes that everyone has capacity which is not true. These sorts of arguments are really dangerous because they tend to be used in anti-psychiatry circles to deny the sickest people the treatments that they need.

Currently the institutions are in on it. If you report that one of their employees is an academic fraud, they do everything they can to sweep it under the rug. Don’t even get me started on retracting papers. Almost impossible.

And so many people spoke so powerfully about living death and loneliness and disbelief from so-called medical professionals. Wow.

Tremendous segment. Thanks to everyone who phoned in. You can really feel the culture shift. When I first came down with this 30 years ago, there was no positive mainstream coverage. Now, the BPSers are on the back foot.

I think they latched onto HR as an explanation because it was the only objective abnormality they could see during an office visit. In actuality people with ME/CFS with and without HR spike can’t be upright.

This author publishes a lot. He should consider publishing less, preferably nothing, since he is convinced of the wrong things and seems incapable of learning from feedback from people with lived experiences of the concepts that are only an abstraction to him.

My issue with this group is that their work isn't improving. I first joined the other forum 11 years ago and have been seeing their methodologically inadequate and underpowered studies appearing ever since. Usually accompanied by huge hype from the authors, only to be forgotten in the bowels of...

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

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...