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Can’t say I’m looking forward to that publication. At least they give us a heads up. There is nothing in these two references about «functional» brain alterations, at least not using that word and I didn’t find anything when skimming the papers. Lloyd and Raijmakers were authors, so they should...

I have no doubt this will be used to argue that there is nothing obviously wrong with patients that present with these symptoms, so there is no need to do tests on them because testing can be harmful. Besides, we have effective treatments that are cost effective, so please give us more money.

Seems like it’s been going on for a while: https://www.s4me.info/threads/uk-action-for-me-policies-actions-and-publications-discussion-thread.21637/

If 80-90 % experienced stigmatisation, and 70 % had a diagnosis, at least 50-60 % of the diagnosed participants experienced stigmatisation. Yes, the results can not be generalised, but it’s undeniable that many patients experience stigmatisation. Ah, yes, it’s the victims that just...

They seem to think that PEM is a worsening of fatigue, so they did not even get the basics right: Then they talk about maladaptive behaviour. Citation 12 is about FM, so I don’t see how it’s relevant to PEM: They seem to be awfully confused about what pacing is. They seemingly think that...

It’s telling that there’s barely any health competency among the authors. The questions they asked the participants are very general and won’t give them any real insight. They assume the app works, and are only looking for incremental improvements.

The heart-related deaths have deviated substantially from the pre-pandemic trend in Norway. I think excess mortality in the general population might be the single best argument for preventing infections because the BPS lobby have yet to find a way to claim that non-suicide or -malnutrition...

If they claim that ME/CFS can be spread through social media, surely that hinges on knowledge about the specific things to expect. I’m not sure the BPS folks even know what they believe, there seems to be a lot of logical inconsistencies and contradictions..

I feel your pain @Covidivici - I’m going through much of the same. Found this when I googled her name. Sounds like she had a tough experience getting sick for roughly two years (well within the range of self-resolving post-viral fatigue), and I’m happy she’s doing better. Now she’s seemingly...

That’s fine. But it’s also a completely different topic from «should HCPs prescribe LDN (or X) for ME/CFS?» When you’re making rules on a societal level, you have to consider the consequences at the societal scale. I think I’ve talked enough about those here so there’s no reason to go over it...

As is fatigability, especially in deconditioned people. Neither concepts will have any impact on the healthcare system. You’re not alone, but your experience is not universal and some have the complete opposite experience. You suggested to replace fatigue with fatigability. I suggest using...

And some will say that fatigue is more impactful in their life. Both should be included, and maybe as an and/or and not a hard requirement for extreme fatigue.

Sure - not a stupid question at all! Deconditioning means the decline in physical and mental capabilities due to inactivity. So essentially being unfit. When you live with ME/CFS, you often have to limit your activity. That will eventually lead to all of the normal negative effects of...

@TiredMathematician Thank you! That’s bad, it doesn’t look like they’ve understood the sources at all. Or maybe like they are parroting anything that’s said without considering the inevitable logical inconsistencies in their paper.

You will always have more positive than negative anecdotes for a treatment if the treatment doesn’t do much, due to loads of mechanisms and biases that controlled trials try to get around. We have no reliable evidence for using LDN as a treatment for ME/CFS. There are multiple ongoing trials...

Good points

This model wouldn’t even pass at undergrad level in business management. The second attempt isn’t much better. Then there’s whatever this is: And lastly: I don’t even want to think about what the firsr draft looked like!

Sure. But getting rid if fatigue is not the way forward. The solution, in my opinion, is to mention and explain both. As long as you include PEM in the diagnostic criteria, you’ll avoid the false positive from e.g. just deconditioned people. Assuming they get PEM right, of course..

Rationing was mentioned here recently and I like it as a replacement name for pacing. I don’t like fatiguability as a replacement name for fatigue, because I think they are different concepts that need different names.

I’m sorry for you too. The only benefit is that it’s one of the few «objective» proofs of my disease - everyone can understand that if my skin is hot to the touch in a freezing room, something is off.