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It's really frustrating. Some of it, especially where they talk about how patients describe their symptoms to doctors, could be really useful. Do GPs need to hear all the theories about aetiology anyway? Surely they'd be most interested in what they can do. Given the base we're starting from...

Starting with the fact that practically nobody with a chronic illness has a baseline capacity resembling a healthy person's, so the idea's nonsense from the off. No matter how well they manage their symptoms, the answer to every question is "It depends on...".

ME bus drivers would be like our day trip to Scarborough in the 1960s! :laugh: The coach driver had had to stand in for another bloke at half an hour's notice and he'd no idea how to get there from Sheffield. The passengers had to direct him all the way, and my dad's mate somehow managed to...

Or any social care for those who can eat, but need support with other aspects of their lives to stay as well as they can. There's been a growing trend of significant numbers of people having legal entitlement to services which are either already overwhelmed or effectively don't exist at all...

What a fabulous talk.

I think that basically is the map for government-driven initiatives. They never seem to realise it's more effective if people on the ground are persuaded they want to do it, because then they'll make it work within the constraints they have. For a fraction of the cost.

I've done N=1 trials with a class of inspiratory and expiratory training devices (various woodwinds), which suggest they: improve diaphragm control significantly have no noticeable effect on autonomic function result in exactly the amount of PEM you'd expect from the exertion involved You...

Me too, it's been happening for about a week. Never completes loading in Firefox, Chrome or Safari.

I did the same thing using a benefits calculator, and my estimate came out as worse off—though in practice it would be the same, as I'd be given the transitional protection for those receiving both the enhanced and severe disability premiums of ESA. I'm hoping they won't even bother asking me to...

Thought I'd add this here—a link to Sonya's reply to @Trish's letter about the care plan. https://www.s4me.info/threads/open-letter-to-action-for-me-with-concerns-about-their-promotion-of-a-problematic-care-and-support-plan-template.39894/page-5#post-558106 A couple of posts further down, I...

I'm still impressed that Sonya saw and acted on the problem straight away. It would have been so easy for her to retreat into defensiveness. I do wish she saw the advantage of allowing S4ME to participate as a community, though. I wouldn't put myself up for a place on any consultation group...

I'd also like to thank @Jonathan Edwards. And to ask him to pass on thanks to Sonya for the work she and her team members are doing.

I've been thinking about this too, but as it was more about a crisis team of doctors, it's probably not for this thread. It would be good to have a small group whose members could take part remotely in a case conference-type setup, to support colleagues in general hospitals who find themselves...

A bit depressing, but not surprising. Doctors advising committees seem to feel that they need to have something to say, and that's when they start on unevidenced theories. They haven't got much else. In reality, there's plenty they could say that would genuinely improve lives and health. But...

Do you think they'd accept the position that in practice, patients know more about ME/CFS than doctors? I wondered if they might be able to come together around a consultation with pwME/CFS on what they actually need from their doctors and other healthcare providers. If they did, they might...

Perhaps underline that some of the more experienced heads in the community are really concerned about the direction the charities' collaborations are taking, to the extent it risks long term damage to their credibility? IAfME and the e-modules, MEA and the PROMs—both are hopeless missteps that...

I get the same problem. It's the absence of that particular focus used for playing. It should be just a switch into a different attention mode, but if it's not there, nothing will come together no matter how hard you try. In fact, working at it seems to chase it further away. If I haven't begun...

Yes, I improve very slowly too. When I go back to swimming, it takes a couple of years to get my position in the water right. It also takes me a lot longer to pick up new tunes than it used to. But I do eventually build muscle, and I do improve at skills—my ability to play music's...

The Vagas nerve—is that the one that regulates gambling behaviour?

Thanks, @Andy, that looks interesting. I've just clicked through, and the info on the website says a recording will be shared afterwards—so those in the wrong time zone or who need to watch videos a few minutes at a time should be able to see it.