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Good-o! Let's see it then, Andrew.

I would agree if there were any specialists available, or any existing understanding of what needs to be monitored and tested and reviewed, as happens in other specialisms. But these services, and the expertise to run them, need to be built from the ground up. I don't know what the clinics are...

Thank you!

I'm not able to attend virtually, but I'll note here one of the things I'd like to know, assuming there have been no major changes: Namely, are all the current ME/CFS clinics are going to be closed to new referrals, whilst the transition is made to offering patients social rather than healthcare...

These devices have no meaningful way of knowing much about a person's cardiovascular fitness anyway, as you've said many a time. They have some idea how much the wearer exercises, and limited information about their resting heart rate and response to activity, but that's all. I think my...

Perhaps once the new NICE guidelines are issued, that could be used as the prompt for a review? (Provided the guidelines haven't been changed drastically, of course.) Where there is general agreement between patients, doctors and researchers that a guideline is as sound as it can be, given the...

This is a good point, and also raises the question of whether thresholds for physical and cognitive exertion can be different. Most days I probably can't do enough cognitive activity to trigger PEM because of attention deficits, but I can also hyper-focus. When I've really dived into...

I'm one of the folk who's never had noticeable PEM from cognitive activity alone. Sensory stimulus is different altogether, possibly because I also have autistic sensory sensitivity and my responses to it are very physical – it makes me tense every muscle in my body, toss and turn continuously...

I hope it goes smoothly, @Agapanthus, and you don't have to take it any further. It's all such hard work, mentally, physically and emotionally. For anyone else who has a renewal coming up, the Benefits & Work website offers training modules on PIP, including caselaw, that are suitable for...

True – I got my first job that way. I only went for that one interview, and started work four days later. The whole process of spending 37 hours a week searching for work, and being forced to apply for jobs where you don't meet even one of the essential criteria, is completely...

Also, they could revisit a previous approach where they acted as the claimant's ally when it came to employment. In the 80s and early 90s, a relative of mine worked for them as a disability advisor; her role was to know employment law, advocate for claimants, and (where necessary) help negotiate...

This!

It might also be a sign of already being in significant PEM, which seems to reflect my experience. Activity when not in PEM often makes me feel great, though of course it doesn't last long. I can only get any sense of where I am by starting to do something. If I can't push through my body's...

@yME, I saw Prof Vaughan Keeley at his clinic in Long Eaton, which is near Nottingham. This clinic does see people from out of area, and will accept direct referrals from a GP. (I don't think this is the case at St Thomas's.) As @Binkie4 says, there is no treatment for lipoedema unless you also...

I used a £20 Wilko version of that in the house for several years! :laugh: (This was before I inherited my current chair.)

We had these chairs in the meeting area of our office, and that was true for me too. My chair has bare teak arms, but both the original owner (my granddad, who was 6" shorter than me) and I found that you can position yourself so that the arms are at a perfect height, and this, along with the...

I guess to test these things, you need to use clothing from the person rather than have them present, so that you can be sure it's not another kind of cue. Not that anyone would ever fund such a study anyway, but it's still an interesting thought!

This is a bit of an aside, but I wonder if dogs can detect whether or not someone is in PEM due to a tiny difference in their smell? They're such amazing animals that it wouldn't surprise me. And if they could, it's a potential biomarker. Probably a nonsensical idea, but...

I certainly found it worthwhile to get my wonderful 1970s Gimson & Slater rock 'n rest chair reupholstered, as I've never found anything as comfortable. A relative with a bad back also swears by his modern Ekornes Stressless chair too, though. It's slightly wider than mine, but is not a huge...

I also wonder whether some of this work is treading similar paths to those already followed in ME, and will ultimately produce similarly disappointing results. I hope not, of course, but when you get new researchers entering a field, it's inevitable that there'll be some reinventing of the wheel.