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Exactly. How is a person ever supposed to move from disability/unemployment toward employment if they are continuing to have the same number of seizures as before the treatment? CODES trial participants had a very low rate of employment at baseline (34%) so clearly the condition was disabling...

Successful use of anti-CD19 CAR T cells in severe treatment-refractory stiff-person syndrome https://www.pnas.org/doi/full/10.1073/pnas.2403227121 There's a pre/post video of the person's gait in the link provided. SPS is the autoimmune condition that forced Celine Dion off stage by the way.

Two high profile trials for long covid failed in the space of one week. I think it's weird companies are launching these expensive clinical trials without doing any preclinical work to figure out what mechanism needs to be targeted. We have no idea what's wrong with these patients or what POTS...

:rolleyes:

All of their behaviour starts to make sense when you realise that the primary objective of such research is to reduce healthcare utilisation, not to eliminate the symptoms (which is currently not possible). The goal of treatment is to convince the patient that nothing is seriously wrong and to...

People on twitter pointing out that it was a negative trial, to which Stone replies with postmodernist nonsense about how it doesn't matter how many FND seizures you have, it's about how you feel about having them. Of course he would argue in favour of wooly outcomes like feelings since the hard...

All this started some weeks ago when pseudonymous posters on Twitter said that the S4 forum and ME/CFS patients on Twitter deny the existence of FND and that this has been upsetting to them. I've personally not seen people on here suggesting that FND symptoms aren't real, though obviously I...

Does not follow from the results in the slightest.

Completely Cured sure.

I’ve downloaded the app and gone through many of the exercises. It’s fundamentally the same thing as CBT, LP, Gupta and any number of other brain retraining programmes that have been out there for decades.

This should be banned by journals. It’s so misleading.

I’m surprised loratidine was helpful. I noticed zero effect from it. However, I will say that another (stronger) antihistamine made me go from severe to moderate years ago when even sitting up in bed was impossible and my POTS was extreme.

Tweet reads: "I'm not, no. I don't think it's the answer. However, going through Curable has helped me understand why the LP works for some (and we all know stories of people it does work for). I'd still love my £600 back that I paid of the LP, it was a waste in my case"

I think under this operant conditioning paradigm, they would regard PEM as an extinction burst, a temporary increase in conditioned response when you remove reinforcement. It's the same with classic CBT/GET approach. Nothing is wrong, all symptoms are just conditioned responses due to fear of...

That's actually shockingly bad, if true.

The hypermobility story never made much sense to me. Presumably you’ve always had this very common condition without suffering from debilitating symptoms. And then one day out of the blue you develop ME/CFS. What’s the causal link? I don’t see how having bendy joints explains brain fog...

Managing gastrointestinal manifestations in patients with PoTS: a UK DGH experience Endoscopy, high-resolution manometry, gastric-emptying studies and colonic-transit studies were commonly performed investigations. Over two-thirds of patients had confirmed or suspected GI dysmotility, 5.9% had...

This is unsurprising given the general lack of research on the very severe.

Excellent article. It’s very important that the abuse and neglect of the very severe is stopped. A number of years ago I had severe ME/CFS. For a period of several years, I almost completely lost the ability to swallow, had huge gastroparesis and also developed numerous food sensitivities so...

Scrolling through twitter, Fiona appears to be campaigning against the 2021 NICE guidelines saying that they have harmed people. She has also stated that ME/CFS charities are harming people with their advice. Hopefully she'll register here so these issues can be discussed in a calm and rational...