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Copied post Mirza case is quite similar to Maeve in that she developed intolerance to eating and drinking and died as a result. The hospital made her worse (psychiatric treatment, no medical feeding support) and she was sectioned under the false assumption that her mother was making her worse...

Same. I marvelled at how well-spoken the callers were. I could never!

I knew a guy who was told this sort of thing after what seemed like a routine infection. Long story short, it turned out to be Sydenham’s chorea.

Unfortunately, psychiatric nurses are trained in the concept of behavioural activation which in practice results in loud, chaotic wards with nurses barging into patient rooms yapping very loudly about nonsense and encouraging the patient to chat and do things. For anyone with sensory issues, not...

These geniuses. When I get an ounce of energy, I have to do the 100 things that piled up on the to-do list while I had low energy. It's a consequence, not a cause of the condition.

I don't want to pile on this caller. I also cringed at the things he was saying but we need to be careful to not discourage people from sharing their harrowing experiences of this illness just because they don't advocate in quite the right way. This person is likely just repeating nonsense he...

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

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.