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Just to update on my Pfizer booster three days ago: I've had no symptoms, thankfully, it's been very like getting the annual 'flu jab.

I don't know if it helps, but my ECGs have all been done by nurses, so I don't always get subjected to the full-on health check from the GP! My most recent ECG was ordered after an online exchange of messages about something else altogether. The background is that I have asymptomatic, probably...

I had my Pfizer booster two days ago. No sign of the lovely energy boost I got from my first AZ dose, but so far nothing negative either. I’d absent-mindedly booked a swimming lane for the day after the jab, and as I felt fine I decided to go - again, all as normal. It’s too soon to be sure...

My parents said I was never the same again after measles. Although I didn’t have all the symptoms of ME until I was 17, I very clearly remember getting the burning muscle pain in my thighs at a primary school I attended between the ages of 9 and 11. I got measles at my previous school, probably...

I might try and step aside a bit, and wonder why they're taking this line. One of the difficulties with pre-existing conditions is that insurers can ask for evidence that a death from a different illness wasn't caused by the first, and this can be quite challenging in some cases. An insurer...

Interesting, thank you. Will take me a while to read them properly, but in the meantime I do wish somebody would offer me a health passport! I mask so well that nobody has a clue unless they're trained, and there are occasional moments where it might make a genuine difference.

Yep.

I guess it's potentially different for every individual? ME's not that uncommon, so it wouldn't be surprising if people had that diagnosis in addition to others, but I suppose some presentations of some other conditions could be confused with it. Especially if the diagnostic process had been...

Fightback used to post quite a few stories about claimants being rung up to see if they would accept this or that award (lower than they were entitled to), probably on the basis that some people would be grateful to get any support at all. Completely outrageous, it's not a salary negotiation—the...

Proper length of wet haddock, isn't it! :laugh:

'Deviance' and 'valence' are just terms used in linguistics. I've had too little sleep and so can't attempt to explain them, but I wouldn't worry about them too much. ETA: that odd-sounding term, 'utterances', is also common.

Would quite like to send them all a T-shirt, saying My patients are already doing too much!

I suspect it isn't, if there's no external ethics approval and participants have to pay for the treatment. Research projects take a strict approach to those issues for very good reasons. Patients can be really poorly placed to assess risks unless they're getting unbiased information. Apheresis...

I could really have done with someone advising me that I should be making plans to withdraw from work a lot sooner than I did! Not that this is what they mean, of course.

Indeed. It's one of the short surveys that could usefully be done with the DecodeME cohort eventually, to get a bigger and possibly more representative sample. If it turns out that, as we suspect, many people with ME either can't work at all or have scaled back their household budgets because...

You must forgive us for a bit of a pile-on in response to some of the apheresis stuff, @SNT Gatchaman! Some of us have just been watching similar stories play out for decades. Many of us (me included) would have been much more excited about it the first time round. It's actually got worse with...

By behaving like scientists? This must have happened thousands of times, but until you do a blinded trial, it's completely meaningless. It's not only unprofessional to sign people up for something with no evidence to back it up, it actually risks creating an impression that the therapists are...

I think the problem there is, useful to whom! Perhaps one of the helpful pressures might be patient involvement in setting standards for trials. If that became sufficiently attractive to funding bodies and high profile institutions to which researchers might look for future employment, it would...

It's really difficult to see people with PASC going through exactly the same exploitation as desperate ME patients in the past (or even fairly recent present).

It often is. Capital purchases are usually treated differently to revenue costs such as overheads, staff, and consumables, and are accounted for differently, too. The classic in my industry was small touring theatre companies being given thousands of pounds in funding year after year to cover...