Search results

A 'conceptual model' of chronic fatigue. He really is down the rabbit hole, with his friends in the Netherlands and Norway. PS I advise people to screenshot Paul's posts to share here, just to document his nonsense. He's clearly not going anywhere, and I have a feeling he might even be ready to...

That's interesting. What is the disorder, if you don't mind my asking?

I don't think its the subcutaneous fat because the pain/soreness feels very muscular. I think I have issues with my fascia. Even before I got symptoms consistent with ME I always felt I had muscle issues — for example I have chronic problems with the IT band (essentially fascial/connective...

I actually meant I can 'feel' as in with my fingers. In specific locations, my muscles — especially the surface layers and fascia, just under the skin — are taught, lumpy, with small, localized areas of extreme sensitivity. I think there's objectively some sort of issue, at least in my case. I...

I can literally feel there is something deeply wrong with my muscles (and fascia). They feel like they've been ripped, and the tissue has tried to heal but failed. In a crash my muscles (not skin) can become so sensitive I can barely touch them. I am amazed nothing has ever shown in muscle...

Five months ill, Lightning Process, off on her bike rides!

A short thread on Paul's most recent Twitter share.

I agree. It takes a very skeptical line, and science moves on, but I think much of it is probably correct.

This article debunks a lot of the MTHFR/detox stuff. May or may not be useful in your case! https://sciencebasedmedicine.org/dubious-mthfr-genetic-mutation-testing/

No suprise that mitochondrial disease is involved. I think this will be a big theme going forward. Totally overlooked.

Devices usually measure this by default, and you can check it in settings. Or you can download third-party apps.

Someone once gave me a glucose / ketone monitor, but it was quite old and seemed like way too much faff to be worthwhile. The newer devices are much easier and might be worthwhile if you felt like diet and metabolism was an issue.

I don't measure anything, but I have in the past measured HR and HRV using a Polar chest strap and apps. In general, a chest strap gives more accurate readings than watches. There's a lot of material on the forum (and elsewhere online) about HRV — though I feel it is often overhyped. One thing...

Not diagnosed with this and therefore I can't offer much advice, but I would be interested to know what your symptoms are, and how it affects you, and how you distinguish it from overlapping ME symptoms?

This article https://www.thecanary.co/uk/2022/10/19/chronically-ill-people-have-had-to-protest-yet-again-for-basic-support/?utm_medium=Social&utm_source=Twitter#Echobox=1666186257-2 on the recent MillionsMissing protest in London states that patients are now lobbying the Wellcome Trust for...

Lumping everything together under one term was always going to cause mayhem. I said this way back in early 2021. It was clear that, at the very least, you could see two distinct groups of patients emerging: those with an illness that looks like PVFS/ME, and those that are suffering from or...

I don't know much about the IOM service, or Juan, but this is the type of work that clearly needs someone with a bit of know-how.

I would search the UKRI website for highlight notices / opportunities (https://www.ukri.org/opportunity/ — be sure to include 'Closed' in your search criteria). Here is one for ME/CFS: https://www.ukri.org/opportunity/researching-me-cfs-highlight-notice/ And then do the same on the NIHR website...

I agree. This would only be a good solution if we could count on medical staff to give an accurate picture of illness/disability. I suspect the person who started this petition does not live with a 'contested' illness.

A good article, but it's wrong to refer to preliminary findings from small studies as biomarkers, and I wish people wouldn't fall into the trap!