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I remember when I was first diagnosed the whole cold showers and baths thing was still kicking around for ME patients. My consultant mentioned it one day, commenting it's one thing for a healthy person in summer but for a sick person.....and also that as some patients were so desperate to get...

Ah yes, the definition of recovery, a slippery thing.....

One of the problems I noticed when I first became ill was when swimming. At the time I didn't put this down to breathing but maybe it is a factor now that I'm thinking about it from that angle. Pre ME I used to happy swim about 50 length of a 25 metre pool in about 45- 50 minutes. The limit...

Yep. This is what I find. Don't allow your breathing to become laboured. On the occasions I manage to join my husband & dog on their walks, if they disappear off up a slope, I just plod, taking my time. How long it takes is determined by my breathing & I don't allow it to become the other...

Good question - no, it doesn't always or necessarily feel like out of breath the way it would because I'd been running too hard when well for example. When I was a kid I had asthma. Sometimes it happened at school. I would just slide down a wall and sit on the floor, wheezing horribly, unable...

Arguably, if they had taken it seriously in the first place many of those chronically ill adults might be productive if an effective treatment, if not cure, had been found. Compared to the potential cost to economies world wide of long covid it might well prove a seriously expensive mistake.

Well Jo Daniels, no, we don't know what works for ME/CFS because there's been naff all by way of decent quality research. On the other hand we do know what doesn't work & that is CBT & GET. By CBT I specifically mean the directive CBT inflicted on many ME patients. Which CBT do you mean, as...

I have had spells where I became very breathless a lot more easily than usual. I tended to put it down to my underactive thyroid and/or anaemia. However, there have been times when this has happened when, to the best of my knowledge, my thyroid hormone & iron levels are as good as they get...

It'll be interesting to see if the psychs make the usual mistake of assuming that a patient who is stressed because they have long covid, with all that entails, develops long covid because they were stressed. Edit - victim of autocorrect

Underpinned by the idea that a mental health diagnosis, or treatment, inappropriately applied can't harm. :banghead:

Maybe I'm being even more of a cynical curmudgeon than usual today but...... Yippee something new let's develop.a guideline. Don't you first need to data gather, observe and understand it? I get that you want to do something to ease suffering and improve outcomes for people while you gather...

Sure but it's still wildly inaccurate. Lots of diseases that can be tested for and where severity can be physically assessed by tests later on in the disease can't always be seen or don't show obvious signs in the early stages. By all means use shorthand but they could at least aim for...

Subjective health complaints - interesting term. Ultimately, aren't all health complaints subjective? We can only experience them through our own perception and the same symptom could have different effects on different people. Difficulty walking might be more of a factor in employment for a...

Yes, I think this is true & may well muddy the waters. Possibly the majority of people with "long covid" contracted the virus but without (accurate) tests no one knows for sure. It is entirely possible that some patients caught some other virus such as EBV, or something else and are...

Absolutely. :thumbup:

Wessely once said something about "treatment" for ME patients being about giving the patient the opportunity to reverse course without a loss of face (paraphrasing). I wonder if the plight of the covid long haulers is providing that opportunity to the likes of Chew Graham?

I think Vogt is doing a fantastic job - of demonstrating exactly the kind of zealotry we're up against. Someone makes a reasonable criticism and instead of arguing the point Vogt becomes personal while telling the other person to take that back. The guy's like a bad caricature of.....something.

I have no answers for you @Snow Leopard. Sorry. I do know exactly what you mean though. It really makes me laugh in an ironic sort of way when I read the latest BPS "offerings" which increasingly tend to be a poorly understood rip off of a simple concept that forms part of a more complex...

Sorry, I'm probably not being clear. It's the usage of the same terms, or the possible mistake by healthy individuals that they might mean the same things that are a concern. This is something I came up against repeated in the early years. Perfectly healthy people telling me that they...

That's the snag for me though, what I felt was totally unlike anything I had felt before. I'd never run a marathon when well but as a teen took part in a few 24 hour sports marathons for charity. By the end of it you could barely move your legs and still faced a hike of several miles to get...