Search results

True, it’s not a slam-dunk. You’d only need to prove to civil rather than criminal standards, though.

By the way, this is all very well when advocating for research funding, but it strikes me as a counterproductive argument when aimed at insurers and benefits policymakers. We really want those people to be doing their sums based on a small, manageable cohort of “moderate plus” pwME and pwLC. It...

Just a single case where a person made worse by GET successfully sues the acute trust could change the risk profile of fatigue services such that NICE-uncompliant practitioners would find themselves managed out or, at least, forced to change their ways. A one-off cause celebre legal case would...

In that case we need to find a friendly research director at a reasonably centrist socio-medical think tank, the Kings Fund or Social Market Foundation say, and tee them up to produce a report on “how to navigate and fund the long-term LC crisis while avoiding the mistakes made in ME”, with a...

I don’t doubt that the story is true or the actress attributed illness to vaccination. I just think that it’s bad practice to link to sites like that, rather than (say) the source you chose.

I suspect it would be a significant challenge to find the £50k+ that even a very lo-fi, no-frills, volunteer supported documentary would cost. This would have to be a pet project of an ME organisation, rather than a few patients.

Netflix screened Unrest in the UK. Which means that their algorithm would find it easy to attract viewers for an ME polemic. Basically, they will show anything - no concerns there about balance or rights of reply! Edit - crossposted with Trish. Yes, would have to be independently made.

I’d also say that something has gone awry if people on S4ME are linking to stories on The Gateway Pundit, which is beyond just being fringe and firmly in the fake news camp.

. I’d say not. Who wants to go down a rabbit hole concerning the exact meaning of informed consent in relation to Covid vaccines? And the moderators would probably be uneasy about allowing this thread, or indeed this forum, to be somewhere in which posters were free to comment on the sanity...

Good for Biden. And well done to the UK’s counter-disinformation unit. You can’t promulgate dangerous nonsense online in a public health crisis any more than you can shout “fire” in a crowded theatre. The Telegraph paywall is best defeated with archive.ph, by the way.

Ballsy! If a smart lawyer identified a UK high volume “fatigue service” that had persisted with GET after the new NICE guidelines came out, and somehow tracked down patients whose baselines had been worsened as a result, then yeah, why not? I’ve seen longer shots greenlighted by litigation...

It’s a reasonable threshold though, isn’t it? ME wasn’t really rare, I’d have thought, even before long covid. I know several people IRL who have it or have had it.

Was it ever? Prevalence figures vary, but never reach the 1 in 2000 threshold.

Generally good. A couple of oddities: it says that some pwME may be allergic to dairy, gluten, or nuts, so check beforehand. That’s certainly good advice for event organisers, as those allergies are reasonably commonplace, but AFAIK they are hardly ME specific. And the advice for event...

That’s presumably quite specific to doctors, though. And maybe cops and teachers, who also caught covid through imposed mingling with the sick. There would be other LC victims who would want the same thing as us: biomarkers, recognition (especially concerning benefits), research funding. And...

Another hard yes. For me, exercise intolerance pains are specific to the limbs used, and feel more like muscular-skeletal damage, while PEM pain is an all-over neuropathic fizzing, accompanied by that poisoned feeling. Very different, but both feel core to this illness.

I’d have put the scare quotes around ‘doctor’ instead myself, considering that she’s currently on a nine month GMC ban for pushing, inter alia, ivermectin, and intends to market herself in future as a naturopath. https://www.bbc.co.uk/news/uk-wales-64457153 Sorry, I don’t mean to keep having...

Same source as the axed Panorama, by any chance? More detail would be useful there, too.

That’s an interesting story. I don’t understand how that could all have happened without more people in the ME patient and research communities knowing about it. Nixing a suggestion is one thing, blocking transmission of a programme in the can is quite another, which you’d expect to make a lot...

Yes. Every single aspect of medicine has a horror story just waiting for a prize winning expose, these days. Why revisit the boring old ME spats?