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I don't get how they can conclude there is no cognitive impairment when they found lower processing speed. It's not clear from the abstract what the other significant scores refer to.

I wouldn't start with YouTube as a source. There are thousands of people with poor understanding spouting all sorts of stuff, as we've found here, and those of us without background knowledge will find it hard to distinguish between them. I had a lovely time for a few years before I took on...

Given that even some ME researchers and doctors and patient groups try to insist that there is a lot known about ME/CFS biology, ranging from outlandish to possibly plausible if replicated, I don't think we can assume anything. It depends entirely on who they decide to consult and what...

Be careful what you wish for. You may end up with an item led by BPS proponents.

I think this whole thread has provided some very valuable contributions to the specific and wider issues about ME/CFS. @Lucibee, thank you for your contribution to this discussion. I think the concept of anchoring is an important one in the context of ME/CFS. I think the paper is sufficiently...

Rather than subjecting them to 2-day CPET and risking long term worsening, it might be possible instead to use activity and HR trackers and symptom apps combined with some of the findings from biomedical testing data from CPET studies of easily obtained biological samples, such as urine. This...

I agree that if a clincian is setting out to test a treatment, or to show it is effective, that is indeed a trial, and needs more than one patient and controls. I was thinking from the perspective of a patient who wants to test a treatment on themself, but perhaps it's expensive, or may have...

Interesting that Jonathan Edwards and my answers are so different. I was answering from the perspective of seeing so many people claiming they have been cured by LP, ear seeds, supplement protocols etc. In order to weed those out we need better ways to verify whether there really is any...

I think ideally I'd want the person trying the treatment to be diagnosed by a reputable doctor, had ME/CFS of sufficient severity and duration to be more than a temporary post viral fatigue, do a 2 day CPET, then track their symptoms and activity using validated technology for at least 6 months...

Understood. I look forward to future articles. I get the part about keeping it tightly focused - better for clearly conveying the central message.

The wording may be different, but is there any evidence they achieve more in terms of influence on government or the NHS? As my mother used to say, 'fine words butter no parsnips'. As I understand it, APPG's are simply groups of backbench MP's with an interest in a topic which can vary from...

It's a really good article, thanks, @dave30th. As a pwME I'm kind of sad you didn't include ME/CFS in any way, but I guess you wanted to keep it strictly to LC and FND.

Thank you for sharing your experience, @LJord. We have another thread about this device: Monitoring Carotid Blood Flow Using In-Ear Wearable Device During Tilt-Table Testing, 2023, Hemantkumar Tripathi MD et al

I agree. I did find in tiny text the option of a low stimulus version, but that still has lots of irrelevant pictures.

I've had a quick look at a few pages on this website. It seems to be run by a doctor and some people with Long Covid. For example: The information on PEM is OK, with links to some resources on pacing. The section on apheresis says there isn't good evidence to support its use for Long Covid...

Ugh, brings back memories of having to go into the genetics department on the weekend to look after my drosophila and try to tell the difference between immature red and brown eyed flies to separate them before maturity. I hated the whole process. I prefer thinking to messing about with ether on...

I think with Long Covid there has been some impact on employers and governments of the numbers becoming too sick to work, so bodies like the NIH are given billions to research it.

I agree. Fatigue is the least of our worries. Pain, sensory sensitivities especially the less recognised ones of touch and pressure sensitivity, nausea so you feel like you're going to throw up, headache so you don't want to move your head...

Hi @SteveFifield, welcome. I haven't tried Visible with the armband, but am interested to know more about how they do their calculations and on what basis. I am borderline moderate/severe or severe, depending which scale I read. Like you I find the whole undressing, dressing and showering...

Replicating this experiment with pwME would be impossible now, as anyone asked to take it can google it, find this and similar discussions, and decide deliberately to, for example, choose the hard task every time, regardless of whether they are too fatigued to complete them.