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Do we have a thread on the article this letter is responding to? It's a very good letter, succincty making a powerful case.

Yes, but it's about whether a person has a symptom, and whether a diagnosis is valid, as in epidemiological research, not about whether a treatment worked or not and the change in the symptom severity in a clinical trial. So I should have said in my post that it's not about the use of PROMs in...

A very good description, thanks and best wishes to the author, Zoe Campbell, and to @dave30th for publishing it.

I wonder why anyone would think strength training a priority for people already very restricted in doing basic daily activities.

Automated heating, A/C, lighting, blackout blinds that can be operated from the bed.

https://cde.nlm.nih.gov/deView?tinyId=QJbSliKT6I So on that scale, the mean Bell score would mean they are mild by other scales since even at 30 on the scale, they can do 50% reduced normal activity, which on other scales is necessary even to get diagnosed as mild.

It saddens me that with so few people researching ME/CFS we get people who have been researching it for years and appeared to be doing worthwhile work show so little understanding of the reality of PEM, the impossibility of maintaining a stable baseline, and the long term consequences of trying...

Composting toilet? Chemical toilet, commode, pee bottle, or will the person have to return to the house to use the loo? Is the intention that they just go to the room during the day, or stay in it overnight?

I think there may be some confusion about context. I don't think the article is about the question of subjective or objective outcome measures for research. I think it's about diagnosis and medical care for individual patients, where subjective refers to the patient's report of symptoms, and...

Nice idea. What about bathroom, wheelchair access and space to move around inside by wheelchair including in the bathroom, insulation, soundproofing, fire resistance of wooden structure? The example you linked is about 10 feet square, not 10 metres.

Interesting that ongoing symptoms and disability are classed as 'rehabilitation need' rather than, for example, financial and medical and care support needs. No mention of whether fulfilling the 'rehabilitation need' will actually help any of them.

What does 'subtle but significant mean here? Statistically significant? Clinically significant? The graphs look a bit different? Did they do statistical tests? Combining this with the use of Fukuda criteria and the multiple possible interpretations, this looks useless as evidence of anything...

Oh wow, that seems extraordinary. Medicine is so messed up, and the journals should share the blame.

And of course everyone knows already that the answer to the meaning of life is 42.

Thanks, I'll add to the opening post.

No need for apology, the details are important to help us to undestand.

I wish people would use honest language like 'sick leave' or 'sickness absence' not 'absenteeism' which sounds too much like vountary bad behaviour. Edit: And another one 'illness perceptions' rather than 'symptoms'. And 'neuropsychological' instead of congitive problems. All slippery terms...

You're right, I'll amend my post.

The aim of this thread is to learn more about what if anything people have experienced possibly triggering their very severe ME/CFS. I agree it tells us little about the underlying biology, but that's not the focus of this discussion.

I agree. I posted on the understanding that anyone taking part on this thread already knows what we mean by very severe ME/CFS, and didn't want to fill up the opening post with a range of definitions and start a side discussion on which definition is accurate. Maybe I got that wrong.