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The current scheme is run by the MHRA. I suspect it could take time to negotiate and agree all the details for a new category of harm – at least as long as the NICE guideline review? – but it's definitely worth pursuing. All those poor BPS practitioners will still need to earn a living if the...

My flippant initial response was 'Ouch!'...but it's also really interesting to see the language, approach, and style of argument used in this kind of review. Huge thank you to @Jonathan Edwards for the experience and wisdom you've brought to this, the time you've given up – and for the patience...

I'm one of those who's always surprised – and horrified – by the stories that others tell. I simply haven't experienced this kind of abuse from anyone I know personally. It would never occur to me to hide my diagnosis, or to assume that others might need to. I guess that's a definition of...

Yes, I don't think what's being researched is the same as a diet deficiency. Some or all of us may be consuming more of a resource than normal; if that's shown to be the case it makes sense to take in a bit more of it, as long as it's not going to cause problems elsewhere. (Although one of the...

The local group I belonged to was operating in the 1990s; and yes, I remember the funds being 'centralised'. I rather drifted away from the MEA at that point. There was lot of controversy swirling around for a while, and I didn't have the energy to separate fact from opinion in order to try...

I joined one when I was first diagnosed, which was branded as an MEA local group – I found it on the MEA website. It was just a local social support group, though, there were no activities beyond meeting up in members' homes or cafes for a chat with other folk who understood the challenges of...

It looks great – my only reason for not joining when they launched it was that I qualify for the Warm Home Discount under the Broader Group, but not every company offers it. It's £140 a year, so it'd be hard to find a supplier who could save me more than that to make it worth my while.

Some of the talks give Zoom links, some give webinar registrations, and some contact details. Seems to suggest that participation is limited – unless a Zoom link appears nearer the time! Might be worth checking...

As far as I can see, just MEAction UK's logo and signatories have been removed. EDIT: Cross-posted with @Dx Revision Watch. I hadn't noticed the removal of Denise's name...

Been mulling about this too. In my view, the original list of 'intolerances' (which is a very perceptive way of looking at them), all do arguably involve exertion. It's not all voluntary effort – there are involuntary types of exertion, such as having to tolerate being stimulated by noises...

I don't kick at all. I use a pull buoy when I'm still rebuilding my core muscles after an enforced break from swimming, and once I'm strong enough to hold my position high in the water, I just let my legs float behind me. Outside of elite racing, the kick doesn't contributes much forward...

Thanks, I'd forgotten all about this. I wonder if anyone has tried to replicate it – from the point of view of someone without medical knowledge, it looks interesting!

I experience something comparable too. Once I've got used to swimming again during a period of improved and more stable ME, I can swim between 1500 and 2000 metres as long as I rest before and afterwards. Last week I moved my old mattress off the bed and replaced it with a new one. It took...

It's well worth a listen. He really, really, really doesn't hold back over the failures! I haven't watched the whole hour with the Q&A, only his presentation. It starts at 5' 10", and goes on until around 32'.

"Not much to see here, to be honest."

"The data indicate that ME/CFS patients have a relatively short disease duration window (<8 years) to expect a significant response* to rintatolimod under the dosing conditions utilized in this Phase III clinical trial." * More than half reported some response, but it didn't appear to be a huge...

:rofl::rofl: I'm nicking that!

Sounds really scary – but an antagonist is the opposite to an agonist. I'd always try non-drug interventions first, such as trying upping blood sugar, taking magnesium, or – as long as you have your levels checked first – looking at iron.

 All contain a programme of gradually increasing activity  All are collaborative, start at a very low, easily manageable, level of activity and proceed gradually  As patients improve they become more accustomed to (and less fearful of) feelings of effort which accompany exertion  Patients'...

I have it occasionally, though it's all over my body (including, bizarrely, the area under my chin). It's the worst pain I ever get. I've identified two triggers: eating raisins in the evening, and low blood sugar. The latter is by far the worst. It tends to happen a few hours after a meal...