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We don't know what the unknown soluble factor is. Prusty thinks it's a signal for cells to hunker down and protect themselves from viruses and maybe other things. That seems reasonable but there's not good evidence for that yet. I have to admit I'm fascinated by the explanation Henderson...

In my opinion you can tell encephalitis letargica it's not like ME because the very ill patients seem comfortable sitting, don't seem to have problems with light or stimulation, and their movement is more stiff than weak. They also dramatically respond to L-dopa which I doubt has such effects on...

Yes, classification of these problems is an enormously difficult problem. We see this reflected in the neverending debates about ME/CFS diagnostic criteria. We might be failing to see the forest because everyone is looking at the tree in front of them.

Can we just ban research into alleged personality factors as cause of disease. It's just today's astrology.

Long covid appears to be a name for a variety of problems, some of which are very similar to ME/CFS. The lack of research to characterize these patients prevents saying more. Patients should point out how similar to ME/CFS at least some cases are, and that ME/CFS would be reasonably expected to...

I am convinced because a PACE-style BPS person would never say CFS is a medical condition. PACE-style BPS wants to take patients out of medical care into their own care. He has taken a clear side. He is saying this is a job for doctors and they need to figure it out. That's also why he says...

He seems to totally get it. Amazing. Yet another sign the public perception of ME/CFS is improving.

Has anyone written an email to Tompkins yet?

It's important to describe events when they are still fresh in memory. I did exert myselves more than I should have yesterday and was expecting a crash. It didn't quite go as expected. I woke up early not feeling so well but also not sure if I was crashed or not. Only after walking for about...

Exactly. I was about to say that people sometimes compare it to a hangover which is well known to be associated with dehydration.

Just wondering if that is something others experience as well? Has the effect of exertion on water balance or relevant hormones in ME/CFS ever been studied?

Maybe they got something else that causes a suspicion of mono, a suspicion of adverse reaction to a vaccine, and some serious illness.

Maybe patients sitting on funding committees can fix things. That could cause its own problems but maybe the overall balance of interests will be healthier.

Note that Jonas Kunst is a professor of psychology at Oslo uni.

It's a small problem. Should be easy for patients to fix it themselves. I'm a bit busy now and if no one else writes an email to Tompkins I'll do it.

The Chalder crap could sound perfectly credible to nonpatients in important positions like journalists and government officials. Respecting mental health is good, right?

I did daily salt water (drinks) last year for at least six months with good compliance and it seemed to be helpful. Any other options? What about drugs that increase blood volume? Do we even know whether the problem is blood volume or insufficient vasoconstriction? Or something else.

On the topic of a formal study, how can you blind patients to this treatment? If given via IV, the solution has to be isotonic, right? If patients drink salt water, they can taste the salt.

BACKGROUND: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) causes significant impairment in dailyactivities, including the ability to pursue daily activities. Chronotropic intolerance is becoming better characterized in ME/CFS and may be the target of supportive treatment...

The essential oils I know have a strong scent. No way distilled water is an adequate control treatment.