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Hope it passes the test—I couldn't have done it today! It's really chilly here, I had to put the heating on for a while earlier. I came back shivering just from putting the wheelie bin away.

:D It sounds like bottled NLP.

Ahhh...election just been called for July. That might affect the migration.

I'm still inclined to ignore the green paper as a desperate attempt to look good to a certain constituency of voters, but pwME who still receive income-related ESA probably do need to be prepared for the migration process to UC starting four years earlier than planned. It's been put in train...

My impression is that the field is at such an early stage of development it's hard to know what any of the results mean. Doesn't mean it's not a promising avenue, just that researchers probably still have a lot to learn about how to manage and interpret the vast mass of data it produces.

I'm inclined to agree, but only because of the level of expertise among clinicians. If the knowledge base was where it should be, cases of mild ME or ME in remission would be recognisable, at least over the course of a number of consultations. I've been in that place more than once, but I was...

On an initial skim-through through it looks okay, though I haven't read it in detail. The first sentence is somewhat problematic (@Trish, hit the off button now!) but the rest is better. Big thanks to Russell for the transcript, it must have been a lot of work.

This. The questionnaire shows zero understanding that our ability to do all activities is completely conditional on (a) how many others we've done or still need to do, (b) how essential it is that day, and (c) what happened yesterday, and the day before, and the day before that. The only...

Anything that needs rhythm (walking, playing music), balance (walking, moving from standing to sitting), spatial relationships (going through a doorway), and grip force calculation (picking up a plate) will show that I'm off. Also having to make up nouns and adjectives because the real ones...

For anyone who needs cool drinks in warm weather and can't keep visiting the fridge, I recommend these ice packs. Earlier on I'd been out in the hot sun for more than four hours, but I was still drinking ice-cold water. I've just taken the second bottle out of my rucksack (more than 10 hours...

I've tried it, but there doesn't seem to be a relationship between heart rate and PEM. I kept careful records for a good few weeks, but found I can incur PEM without raising my heart rate much, and swim at 90% of the notional maximum heart rate for my age without incurring it. The type and the...

I knew about it, but as I don't (and won't) have an X account, I couldn't follow it.

If they wanted to recruit people who'd recently been treated by a clinic, it might produce a group that can give insightful feedback on the current setup, but is short on experience of long term ME management and knowledge of current and historic research issues.

Luckily a workable clinical review tool exists already. Typical question I'm asked: "Is there anything you've been struggling with more than usual, or have you been a bit better?" I can't for the life of me see what's wrong with transferring this approach—asking a simple question that both...

Given the discussion on the thread about the MEA-funded clinical assessment tool, the session on clinical trial design might be an opportunity to submit some questions:

I hope the list of activities includes filling in pointless questionnaires.

That probably is different to introversion, as severe anxiety can be physically exhausting. My only proper taste of it was when required to speak in front of others or similar. Every muscle seemed to be held in tension, and I'd leave feeling as if I'd done a 10-mile hike. I get some of it...

As an autistic introvert from a family of introverts, I can happily confirm that it doesn't resemble PEM in any way. Not even a homeopathic-strength hint of it. For start, it's not obligatory (we'd rather have time to recharge, but can manage without) and going to work every day in a highly...

Yes, which first goes out on Tuesdays. The other possibility is You & Yours, which although it's often described as consumer oriented, does cover some health topics. It depends how deep they're going—File on 4 is much more in-depth than the magazine-format You & Yours. If it's a substantial...

I'm not sure. It seems to be accepted that natural recovery is possible in ME, and we really need to know what proportion does recover and how long it takes. It wouldn't be possible to separate new onset ME from other post-infectious conditions anyway, because they'd look just the same. The...