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If clinics' funding and existence depends on the results of PROMS, then consciously or unconsciously, PROMS data will be manipulated to come out in their favour. The easiest way to do that will be to put off the more severe/deteriorating patients from doing them.

Would this fit the picture of an illness that can sometimes have quite abrupt remissions and relapses?

Yet again this factually inaccurate claim. I wrote to the APPG on Long Covid asking if they could point out to her that this is factually inaccurate and that a correction to that effect has been made in the BMJ. Didn't get an acknowledgement let alone a reply. I wondered about contacting...

10 is Barakou, I, Hackett, KL, Finch, T, Hettinga, FJ. Self-regulation of effort for a better health-related quality of life: a multidimensional activity pacing model for chronic pain and fatigue management. Ann Med 2023;55:2270688. https://doi.org/10.1080/07853890.2023.2270688. On a quick skim...

It speaks volumes that even with this hand-picked group of participants who are agreeable to the idea of the intervention, rewarded for completing it, and nursed through it with intensive personal support, the researchers still can't get the result they expect.

There were 23 adverse events, which seems quite a lot considering they only had 12 participants.

Nice, thank you!

This reminds me of when my autistic son was taken to A&E with what turned out to be a broken bone. Initially a doctor refused to send him for an x-ray on the grounds that "he's obviously fine" - because he was sitting quietly on a chair. If he had actually been fine he would have been running...

Would anyone be able to copy and paste the text of the letter? It's blanked out for me (probably because my browser blocks Twitter trackers etc)

1. Covid infection was the trigger. Not connected to anything in my previous physical or mental health that I can think of - but I do have a closeish relative who had ME for many years (and then recovered) so perhaps there is a genetic predisposition. 2. Like everyone else says really: Pacing...

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?