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Ah ok. Well that is something different, although I'm not sure what.

My Mum has suffered with what she calls "bad nerves". I think we'd call it anxiety these days. I don't really remember it but when I was a kid she had a period that was really quite bad. It's been a theme for many decades. Poor sleep, overthinking, worry, etc. I don't know whether I would class...

New short essay in the Guardian, which ends with a foray into mind–body land. https://www.theguardian.com/books/2026/jul/05/susanna-clarke-i-had-been-ill-for-11-years-i-felt-like-i-was-about-to-fall-off-the-world

Yes, there's very little they can offer and in my experience they end up focusing on stuff like pacing, diet, mind–body stuff, which is very expensive tinkering around the edges. This is the case even if the specialist paints themselves as purely in the 'biomedical camp'. You might get lucky...

Ok. Is that generally a good thing or a bad thing? Please tell us!

I am sceptical of linking anything with onset type because there seems to be a lot of us who just don't know whether an infection was involved or not. It's often guesswork. You might say, 'well, you're in the unknown group then', but others with a very similar history might have chosen the...

I've seen award extensions of a year or so. In this latest wave they generally seem to be 2 or 3 years from what I've seen on X.

Just tell them that an award extension of less than two weeks makes no sense and you think that it might be an error.

They'll probably tell you its right. The people on the phones are generally not that great. But I really doubt they'd extend an award by a month. It makes no sense.

They make so many mistakes when writing letters — usually related to wrong dates — that I would question this. It's probably a typo. As noted above, there currently seems to be a mass programme of award extensions, so there's a good chance that this should read October 2028 or even later than that.

This post has been copied and following posts move to a new thread: The Recovery Channel, Rachel Whitfield and Paul Garner Panel discussion from the EU Long Covid Project final meeting, featuring Paul Garner and Rachel Whitfield. Not a COFFI event, but added to their YouTube, which was...

This post has been copied and following discussion moved from COFFI - The international collaborative on fatigue following infection[/HEADING] Panel discussion from the EU Long Covid Project final meeting, featuring Paul Garner and Rachel Whitfield. Not a COFFI event, but added to their...

There was a Raj paper showing that betablockers can make things worse in PoTS, especially at high doses, because they reduce cardiac output too much and can increase fatigue. Lower doses were much more beneficial.

Betablockers do seem to work well for some with PoTS. I was just giving my personal experience, which I know matches others with ME/CFS. I think some take betablockers simply because their tachycardia is out of control and that is very unpleasant, regardless of other OI symptoms. EDIT: Removed...

Yes, that's right. There's other stuff going on, but reducing heart rate allows it more time to fill and increases stroke volume.

Yes, was going to mention this. Propranolol lowers my HR but doesn't relieve my main OI symptom, which is a sort of heaviness in my chest when upright.

I think we are much closer to understanding these issues than many others that appear in ME/CFS.

I don't think the tachycardia is that important. I think the tachycardia is compensatory. There are different upstream failures — hypovolaemia, venous pooling, sympathetic overactivation — driving reduced venous return and therefore compensatory tachycardia. The tachycardia is not causing the...

I disagree. The evidence points to brain hypoperfusion. We have reasonable evidence of reduced cerebral blood flow velocity from TCD studies — Novak, Raj etc.. The common symptoms of PoTS/OI certainly line up with that. I really don't think this has anything to do with the unpleasantness of...

Abstract Background The mechanisms driving the broad spectrum of Long COVID symptoms—such as fatigue, brain fog, pain, and dysautonomia—remain uncertain. This study investigated central sensitization (CS) as a potential contributor to symptom burden in patients with Long COVID. We aimed to...