Search results

From the information about the FLiRT variant above: So, that's alright then...

More about Ren here: Ren - British musician

From Nath's initial comments: I find that pretty amazing and tone deaf. Despite a substantial budget, enormous resources and a lot of time, the NIH was not able to deliver a study programme with the planned 40 ME/CFS participants. In fact some of the studies had less than 10 ME/CFS...

Interesting topics to explore. Welcome to the forum @EmmaS302. How did you and the team come to be doing a study on ME/CFS?

Maybe, just maybe, in their 'larger clinical trial', they could have some controls who don't get the benefit of any of this very clever requisite multimodal rehabilitation? Who knows, perhaps they would find that some people recover just fine without any inputs? Maybe, just maybe, in their...

They say they did. And Lucinda Bateman seems to be involved in, at least, the 'structured pacing' trial. I'm not sure what 'structured pacing' is, but I doubt that it's the only intervention used to prevent post-exertional malaise. Still, I guess it's ok to find out how best to teach newly...

These are the 4 trials: * stimulants to make people experiencing hypersomnia stay awake :banghead: * melatonin and light exposure to reset sleep cycles * 'personalised cardiopulmonary rehabilitation' - exercise, education and social support (supposedly not for people with PEM) * 'structured...

Link to @Simon M's thread on his blog about this work Remarkable researchers hunting for ‘something in the blood’ of people with ME

Maat, I'm not understanding, how does the WHO document relate to the Cochrane Exercise Therapy review? For people who want to discuss the WHO document itself, with its content on post-Covid-19 condition, there is the WHO News thread.

from a post elsewhere:

Well done @Laurie P. That response to your questions is, well, pathetic. They completely avoid acknowledging that reminding a participant each day of their frailty and asking about whether they want to stop may well have an impact on the person's performance on the task, not least of all a...

Surely that is the reason? There would have been a lot of scrutiny and commentary that might have influenced peer reviewers and editors; possibly even some of the participants may have had something to say.

I'm not a statistician. But, to me, the level of matching at baseline is important when reporting on the difference in mean change. If the placebo group was substantially worse at baseline, then we might think that a decrease in that group might have a lot of 'reversion to the mean' impacting...

The WE&ME Foundation continue to achieve some remarkable things - here, news that they have convinced a medical association to donate the proceeds of their annual doctors' ball event: Austria: WE&ME Foundation (formerly TEMPI-Stiftung, TEMPI-Foundation) Thanks yann04, I'll add it to our...

That's remarkable and very positive - that a doctor's association would choose to donate to an ME/CFS research foundation. The foundation must be networking incredibly effectively.

This is the core problem - an organisation that provides a platform for advice on medical treatments, but has no functioning quality control systems. And that's bad for sick people, but also, eventually, bad for Cochrane.

Just on my diabetes +ME/CFS comment, the MEA has a note on that https://meassociation.org.uk/medical-matters/items/diabetes-mecfs/# where they say

That decreased level of mitochondrial ATP in ME/CFS and LC sounds interesting and large. A '1.6x decrease' seems an odd way to express it - '0.6 of HC' would be clearer. Although they say that this result is consistent with another study, we have seen studies where mitochondrial DNA is not...

Yeah, it's stating the obvious, but sometimes it is nice to have the obvious stated. You are smart, you are kind. You care about what others think about you. You genuinely want to connect with others, are willing to make considerable efforts to do so, and are actually following through with...

Yeah, that was my question, and it was more coherent than the administrator managed to make it sound. I had a couple of other questions in that did not get answered. All up, it was underwhelming and frustrating. There was no accountability to the ME/CFS community. Turns out the NIH ME/CFS...