Search results

Now 11,836 signatures. It's been wonderful to see the recent increase in support. Thanks very much to the latest supporting organisation: Suomen ME/CFS-yhdistys ry - The Finnish ME/CFS Association. If any members of Suomen ME/CFS-yhdistys ry are members here, it would be great to hear more...

They seem to be conflating post-exertional malaise with a worsening of symptoms. They don't seem to have understood what we were saying about the difference between fatiguability and PEM/a crash. They seem to still be treating these things as the same things. Even the name (Post-Activity...

Certainly, the answer is not making 'all stakeholders happy'. That was clear with the NICE ME/CFS guideline. But having people with a range of perspectives on the problem (including experience of severe ME/CFS) on a writing team goes some way to ensuring important things aren't missed. And/or...

It doesn't sound as though the modules should be allowed to stand. I don't think we need 'perfect', but something that does not explicitly state that people with PEM should not be told to exercise is not even 'good enough'. I don't understand why David Strain was given the job, on his own...

More tweets

I'm not sure that your disability needs to be mysterious, your initial explanation just needs to be short. Something like 'I have a post-viral illness, the flu that caused it has gone, but I'm limited in how much energy I have, how much I can do in a day'. I actually think that a lot of people...

Of course, 'good intentions' and 'meant well' when combined with 'low effort made to actually understand the situation' result in stuff that isn't helpful. Still, there is the 'It is not a psychological problem as it is often thought to be'. Could be worse. To me, it looked like something AI...

No, she wasn't getting worse, although there were fluctuations. If you were getting worse up until the cyclo started working, then that does make your experience more compelling, I agree. But, and sorry to be annoying, but what if it was the various other treatments that you were trying...

It is very good. I'm so glad you have a father who understands the situation @Yann04.

I think the trick might be in the word 'specific'. As in: There is no treatment that is specific to ME/CFS. But, (in case you hadn't heard), CBT is even used to help people with cancer and MS (and we don't hear them whining about it). That said, it's a bit hard to tell if this disease...

Great analysis Karen. @siobhanfirestone, you are right to point out that the selection criteria for the PACE trial was loose, and that it is likely that some people who didn't have ME/CFS were included, and their recovery odds may be different to a person with ME/CFS (including PEM). Against...

Yes, it is hard to understand. Just for clarity: The 2021 NICE ME/CFS Guideline is NG206. The 2007 NICE CFS/ME Guideline was CG53. Even the 2007 Guideline says

I think Sarah is talking mainly about the ME/CFS guidelines having a problem: but my comment about doctors being able to deviate from the guidelines in order to properly care for the patient in front of them applies to any NICE guideline. I don't think the people involved in the development of...

My bad and all that, I was busy yesterday and didn't bother to look beyond the abstract, even though I knew the percentage reported would be questionable. Any percentage a review on this subject reported would be questionable, simply because pretty much all the studies are flawed and the...

I am certainly not an expert in this, but my understanding is that the NICE Guidelines are only suggestions, not mandatory requirements. That is why they are called 'guidelines', and they have 'recommendations'. My understanding was that doctors are free to deviate from guidelines if they...

Latest petition update: 1 October 2024 Enough is Enough Thanks to our supporters Thank you so much to all have signed and shared the petition link. Thanks to Fatigatio e.V. Bundesverband ME/CFS in Germany for adding their support to this campaign. We now have 77 organisations, including most...

Looking at the data, there was a bit of a trend to the creatine group having slightly better results than the placebo group in terms of fatigue and time to exhaustion. But the small sample size and the small differences means that nothing much was statistically significant. e.g...

The abstract says that creatine supplementation increased tissue creatine levels and that people taking creatine had less symptoms over time. But it doesn't say that the reduction in symptoms in the people with creatine supplementation was more than in the people without creatine supplementation.

Thanks for the analysis @ME/CFS Skeptic and @EndME. I was conscious when I posted that I was giving it a bit of a free pass, partly due to it reporting conclusions aligned with my belief that a significant part of Long Covid is ME/CFS. Looks as though the analysis in the paper should have been...