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Cargo cult stuff. We'll act as if there are treatments, and if we keep acting it out for long enough, maybe the effects of a treatment will happen.

I hope someone can ask her what she actually means by "goal setting" and "treatment planning". Professional jargon is a slippery thing. (Neither my GP nor the ME service nor the Long Covid clinic have tried to get me to "set goals", so I'll look forward to hearing that they've all been struck...

It's just inevitable, I'm afraid - they'd be saying the same thing whatever Decode had come up with (and continues to come up with in future).

The MEA's website says "ME/CFS has no effective drug treatment and full recovery is rare, but symptoms can stabilise and improve over time with careful management and specialist support." So what treatments are they talking about here?

No, this was also when I was healthy. Another example: for years I was frequently late to pick up my children from school, even though that was a fixed time point every day, week after week for years - because I had no sense of when 3.30 was approaching unless I constantly checked the clock, and...

I'm interested to know what the evidence basis is for this being 'everyone's universal experience', because it isn't mine at all. To use your examples, I sometimes sense the need for lunch at 11.30 am and sometimes at 4 pm, and there's no way I'd be able to bring an interview to a close after...

I agree it looks like it has promising aspects. But the featured "Activity Energy Diary" and "Structured Thought Diary: a guided CBT-style tool for patients to record symptom triggers and responses" don't suggest that their advice on learning to pace will be particularly good. Or that they have...

Maybe this website could have a donation link somewhere prominent on the home page?

As Groucho Marx put it: "If we had some ham, we could have ham and eggs, if we had some eggs."

Would this theory imply that (what we currently call) ME/CFS and post-viral fatigue/illness are the same thing, just that in some people it resolves fairly quickly and in others it doesn't?

In my cynical moments I think it isn't an accident that these trials are being done with a confused definition of Long Covid that lumps together different conditions so that no meaningful results come out of it. Because meaningful results would be quite inconvenient. I don't mean that's what...

They [the Department of Health I mean] don't think it's real in adults either. They keep trotting out the line that the REGAIN trial proves LC goes away with exercise and 'behavioural support'.

Government by magical thinking.

Ref 7 is: https://pubmed.ncbi.nlm.nih.gov/39337079/ A Pilot Study on the Effects of Exercise Training on Cardiorespiratory Performance, Quality of Life, and Immunologic Variables in Long COVID

Really good letter @Robert 1973 Andrew Millar: "Chris Ponting says that medical misogyny has held back research in myalgic encephalomyelitis (News, Aug 8), but appropriate scepticism of scantily evidenced claims may also have contributed." Funny how appropriate scepticism of scantily...

Definitely, if it's a well-defined cohort of ME-type Long Covid rather than the 'anything-that-affects-you-after-Covid-that-doesn't-have-another-explanation' definition of LC.

The LLM isn't actually detecting any real hype, it's just generating some text about 'hype' because similar text strings are often found in the sources that it's been trained to mimic.

My guess is they prepared a media response strategy based on the assumption that genetic linkages to depression and anxiety would be found. Without that, they have to fall back on pretending the whole thing is insignificant.

The dogs bark, but the caravan moves on.