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Would it be a good idea to make an experiment with some brain blood flow enhancing intervention to see if it improves cognitive impairment?

She seems a little defensive about MUS. Is her view that MUS are the real somatizers, while true ME patients have an organic illness?

Fatigability is when the person quickly becomes fatigued when doing things, even when they were not feeling particularly fatigued when they started. Within an hour, I can go from feeling relatively energetic to collapsing on bed. This is a problem of fatigability.

Diplomats in China are now also reporting this.

The "loud crickets" explanation seems to make no sense because then there would be a lot of similar cases and we wouldn't be wondering what it was.

My interest is in the plausibility of the idea that cognitive ability declined due to disuse. Presumably this is what the authors think.

Am I the only one that finds this strange? It may well be true that the patient preferred physical activity over talking but this shouldn't normally result in notable deterioration of cognitive ability. Am I wrong? The authors seem to suggest that the cause of the cognitive deteriorarion was...

If you can't move the ball to the goal, move the goal posts... People that tend to define recovery like this are tacitly admitting that they cannot obtain satisfactory recovery rates when recovery is defined the way everyone else understands it.

If the NIH funded the earlier nanoneedle work then they still deserve some credit. They aren't doing as much as they should but they're still doing something, which is more than most other funding bodies are doing. I find it concerning that on Twitter anything the NIH does in relation to ME/CFS...

What about cyclophosphamide? It seems to me that a RCT of it was justified by the earlier Rituximab findings, which are now recognized as spurious. There no longer seems to be a reason to think cyclophosphamide could be effective. Edit: I agree that the article itself is a little confusing. It...

I think long term patients can have a distorted view of recovery would be like. They want to be well again and begin a new chapter in their life where can forget about the time they were ill. They also have been ill for so long they don't remember what normal feels like. Their life is adjusted...

Saying that CFS is perpetuated by thoughts and behaviour is just a nicer way of saying it's all in the head of patients. The patient thinks they have a chronic neuroimmune illness, while Wessely et al claim the condition is reversible by challenging unhelpful beliefs and increasing activity...

That's a great opportunity to explain problems with the cognitive-behavioural approach to ME/CFS, the PACE trial, and how this affects patients (lack of research, patients dying from neglect, mothers being terrorized). The people to interview for this would be Keith Geragthy, @Tom Kindlon...

Looks like a copy and paste error to me. Is he collecting bookmarks for later use?

Sounds like QMUL was either careless or was actively trying to prevent an accurate analysis of individual patient outcomes.

I hope the Karl Morten team has data that will show GET to be useless/harmful. Then we can finally move on from CBT/GET.

Most patients, when they first get sick, have a bias towards trying to carry on despite the illness. They then painfully learn that they must reduce their activity levels. That's why I think that reducing activity levels is genuinely helpful. It is not what patients initially want or believe...

I think it would be good to test the things many patients agree are helpful based on their own experience (but which are not the things everyone "knows" to be helpful for chronic illness, like exercise or sleep hygiene). For example paying attention to sound and light sensitivity, or...

I think this thread demostrates that patients already have opinions on sleep. That suggests they would give biased answers in a clinicial trial of sleep advice. Maybe the bias is well founded because patients are right that the usual advice given is not helpful, maybe it is not.

Exactly. Afternoon naps are also good (in moderation).