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What a disgusting study, implying that the families are somehow causing the condition due to increased healthcare utilisation. Of course "FSS" runs in families, it's probably heritable.

Of infection?

Hopefully they will submit something for publication so we can read more details about how they recruited controls. Sometimes healthy controls are not so healthy as in the case of the NIH study where the healthy controls were relatives of patients and in many cases had orthostatic intolerance.

In Table 2 they report the median number of seizures in each group at each timepoint (baseline, 6 months, 12 months). As you can see, despite randomisation there was an imbalance between the two groups in terms of the median number of monthly seizures at baseline which is problematic because one...

Good question. No, the way they analysed this is they simply counted the number of seizures in the past month in the CBT group vs SMC group at 12 month follow up. They asked people at 12 months how many seizures did you have in the past 4 weeks and calculated the median in each group. The median...

I was also taken aback by this sentence. I guess they’re saying that if you carry out 40+ statistical tests at 6 and 12 month follow-ups, as they did in the initial Lancet Psych paper + various follow-up papers, you get some significant results so it’s not all “negative”. Of course, trials don’t...

PD patients tend to be older adults who lived full lives prior to being struck down by a well-accepted neurodegenerative disease. Lack of stigma and impending death means there’s little incentive to waste precious remaining life years on futile discussions about biology. ME strikes people in the...

Makes sense. The sensitivity analysis carried out by people upthread, with the single responder included, showed that the effect was changed (in favour of the null hypothesis). This means that the main analysis was not robust.

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.