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Sounds like good news, though!

I can't answer the question because I don't even now anyone with direct experience, but I must admit performative healthcare was largely what I expected when they announced treatment clinics for something without a treatment. I'm sure that's unduly cynical in some cases, but...

I'd say it probably indicates that there isn't anything else to try. But what's behind my unease is that it's not getting funding and running trials that's the difficult bit. They could buy in that expertise, there must be thousands of researchers in the US who've made that journey with other...

That's a really valid point, but I'm a bit worried about the ethics of getting the experience this way. These drugs aren't benign and there's little to suggest they work for substantial numbers of people, and whilst I can see the arguments that it'd be useful to put LDN to bed once and for all...

I guess the difference is that in socialised healthcare it's not really the patient calling the tune, and in some respects it's not even the doctor. It's true that GPs/primary care physicians have prescribed some classes of medication off-label, e.g. antidepressants, but for many meds either...

Yes, I've given by debit card before. Just done my donation, and it looks as if any Visa or Maestro card will work.

I agree. I don't know anyone who's tried it, or even how on earth you'd go about getting it prescribed. I can't see any GP agreeing to it on the basis of zero evidence, not least because they'd probably be at risk of GMC sanctions.

From @MSEsperanza: (Not a reply on Mastroianni but thought it could serve as a comment. Sorry it's pessimistic.) James Heathers: The Right to Be Wrong Isn’t The Freedom From Consequences And From Where Consequences Might Arise...

At its simplest that's right, as clearly many sick and disabled people couldn't reasonably be asked to do any work. But in some cases employability needs to be taken into consideration as well as capacity. Before my memory really went down the tubes I might have been able to do a couple of...

I think those huge billboards are a good idea, as nothing else has that much visual impact. The best ones are positioned where traffic tends to back up at busy periods. I can still visualise some of the posters I saw on my way home from a job I left in 2013, as I spent at least five minutes...

So many people have been sexually assaulted that, depending on the definition, it's possible any associations simply reflect general population trends. I don't know about men, but it's a pretty normal experience among women of my generation. The majority don't involve rape or significant...

It was reported in the paper the other day that Labour has said they won't implement this. They've said other things then rowed back on them, of course, so there's no guarantee, but my MP said that a lot in the parliamentary party don't like the proposals at all. For those who currently have a...

Obviously they may be able to get some ideas from the way DecodeME was set up (some of the approaches could potentially help even with a much smaller trial), but folk here might be able help by offering feedback – their research question, the way they hope to recruit, the screening tools, the...

Yes, me too. I wonder how many others here have secretly identified three or four friends or relatives who'd be a good match as their healthy control if they passed screening...? :laugh:

You've a more open minded view than I. I suspect some of being out and out grifters, and would be surprised if they believed their own hype. As for the patients, not everyone will know that remissions or gradual natural improvements are possible. If they took supplements and it coincided with...

What therapy, though? There isn't any. If patients aren't there for initial diagnosis, tests to exclude alternative diagnoses, teaching of pacing and management techniques, assessments for disability aids, referrals for mental health support, advice about negotiating reasonable adjustments...

I've often thought this would be a useful thing to investigate. My experience is similar, albeit on a more modest scale. For me, the quickest route to PEM is using my abdominal muscles to lean forward and outwards, as you would if putting a new shrub into a garden planter. My abs are fairly...

Yes, and that weird thing about how capacity collapses in PEM. When rested I can take steps across a room whilst speaking or laughing and it doesn't make me breathless. In PEM, I move six paces to pick up a book and I'm out of breath; when I sit down again, it takes several deep breaths to...

From @MSEsperanza: There has been a follow-up and an update on @dave30th's blog post. From the 'follow-up' on 2023-10-19/ David Tuller: https://virology.ws/2023/10/19/trial-by-error-a-follow-up-on-anxiety-and-depression/ UPDATE:

Although I agree that there's a major problem in the culture of medicine, what she says may be a fair point in some respects. Most primary care doctors won't see all that many ME patients, they rely on clinical guidelines and the general trend of research to inform their practice, and we're...