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Both barrels are always good to deliver with!

I thought, on balance (and I don't do balance very often where the charities are concerned) was it's an ok survey actually - but echo some of the points above; I too fall above their 'moderate' but not bad enough for severe - but, I guess one thing we know is that everyone is different and can't...

I get the sense that this is what the World ME Alliance is trying to do. There was clearly some attempt to coordinate the one day thing this year, but in the UK we then had MEA going it's own way with ME Awareness Week and a different # on social media than the WME Alliance was using. Which...

When I asked about minutes after previous meetings, I got very short shrift from Carol Monaghan that they would be agreed at the next meeting and then published. ETA: I'd not be holding my breath..

Hmm, do we think this may suggest some coordination with World ME Day (or whatever it's called), like last year where the DHSC thing was announced?

I agree, on balance, that it’s a pretty good document.

I can't help but think that in due course, some of those with LC that also satisfy an ME diagnosis, will be doing their darnedest to go with the latter. Seeing just in the last few days some Drs online doubling down on the need to perform exercise studies doesn't bode well for LC patients as we...

Just updating on this. It's good to be able to echo the experience that @Daisy had of Dr. Barham. Had my appointment a couple of weeks back now and she was very knowledgeable, made clear that time was not a pressure (despite all the emails re the booking saying 30 mins MAX). Mine was a...

I had a single CPET back in late 2021 and it was the first test to show that something is actually wrong with my body. Shows that I have what was described as a metabolic impairment - or, in simple terms as the cardiologist put it, my muscles run out of energy really quickly. Respiratory...

Feels like the APPG leadership (there are 5 or 6 co-chairs) and/or the secretariat, can't organise the proverbial drink up in a brewery. No meeting for something like 10 months, what could been seen as a hastily organised meeting when there was a bit of agitation on social media (such as The...

Thanks, good to hear that she knows her stuff. The reports I got previously (MET) were excellent, very thorough, so, is good to hear that they've kept that up (the medical side of AfME is basically MET led from what I recall, so, hopefully they will be able to maintain the quality that many of...

Curious if anyone has seen Dr. Barham through AfME since she joined? I've got a follow-up appointment on Tuesday (saw Dr. Worthley and Dr. Taylor previously in the ME Trust days), so can report back if it helps folks.

Just playing catch-up on the recent gems from the PG collection.. Might be slightly off topic, but, am I alone in being somewhat baffled why the MEA decided to share the Livpost article on their FB feed? (sorry, can't see how to share FB posts now, else would for completeness). Whatever the...

Excellent question. I could hazard a guess or two, but it probably wouldn't be very scientific or constructive..

What I find amusing (in a warped kind of way) is that nowhere in this, that I recall reading - albeit this morning - do they seem to say that they are writing this piece, acting in the best interests of patients, that patients are being harmed by the new NICE GL. It's just, NICE didn't agree...

Reading the snippets above, I felt (through my fuggled mind) it starts off ok and I'm thinking, oh, that's suggesting some empathy with the illness and then it just hangs a right and careers straight off a cliff, crashing into a messy conflagration of NICE-opposing, ME and CFS, exercise and CBT...

I didn't read this initially because of their previous tomes were completely undigestible for my ME brain, but having seen posts here suggesting it was more readable than before, I looked and am pleasantly surprised that I managed to get through it without it nearly killing me. That's progress.

It's genuinely scary. I dip into LC subs periodically and saw someone the other day ask if they could/should exercise themselves so much to the extreme that it resets their body. Needless to say, I suggested that they didn't and go to the opposite extreme and just rest and pace. The message...

Just watching the first 45 seconds makes me want to throw up. Not very helpful or scientific, but, just a statement of fact from where I am sitting right now, on the sofa, wishing I was well enough that I could do military fitness, have a scuba diving holiday and that it was as simple as...

Thanks Jonathan, appreciate the reply.