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I think any conference would have more value if different orgs collaborated, but unfortunately they all seem to want to do their own thing.

They are calling it 'International Conference Week' now as there are several events/conferences running consecutively, as is usual for IIMER. More details here: https://www.investinme.org/meconferenceweek2025.shtml

Thanks for posting this Andy. These corrections have been made after I contacted the journal editors about the issues as well as Reviewer 1's 'I clearly didn't even bother to read the paper' review. BMJ tells me that "[they] have verified that the standard of peer review met the journal's...

I think we can safely conclude that it seems they don't want patients to know which drug this is, but they are probably underestimating our ability to figure it out (I think Amifampridine is a good guess).

There are some on X speculating that it might be Amifampridine, a potassium channel blocker.

I think we'd just be guessing at trying to make sense of this drug identifier. There are so many different possibilities, including that the identifier doesn't really mean much at all.

I'm wondering if this is not more likely to be some sort of supplement formulation, given Dr Godlewska was doing work on creatine (I think).

I think Lindus Health is just running the trial — the 'CRO'. They aren't a pharmaceutical company. They seem like a healthcare startup for doing clinical trials. The trial sponsor seems to be Alfred E. Tiefenbacher GmbH.

Seems to be related to work of Dr Beata Godlewska at Oxford, discussed here: https://s4me.info/threads/university-of-oxford-cfs-study-researching-the-biochemistry-of-chronic-fatigue-syndrome-closes-30th-dec-2022.23609/#post-394994

Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) affects around 1% of the population, bringing significant challenges to daily life. There is an urgent need for new, effective treatments to improve the quality of life for those affected. If you've been living with ME/CFS symptoms for...

I have commented below this post about how this is likely an overestimation. Not to mention that this prevalence figure is based on people infected with COVID, not the general population.

Do SFN patients feel really unwell. Like, really unwell ME-unwell? Physical *and cognitive* exhaustion? Immune (flu-like) symptoms, sore throat, tender lymph nodes, worse in PEM/crashes..? From what I've read that's not the case, although there is of course significant symptom overlap. I guess...

It should be easy enough. You submit a SAR and the form should include an option to get all imagery. If not then add that request yourself. The hardest part is dealing with the file formats and reading the imagery files, because different trusts use different packages and you'll need to install...

I think this is no different to internal tremor/vibrations. When milder, I used to get them when I'd overdone it. I could feel it in my upper trunk. Now, with onset of OI/PoTS, this symptom is much more common for me and I feel it most in my left hip and left leg.

I think these studies are often done just so someone can get a publication. They add nothing, usually. Always the same story: the studies weren't good enough to say anything of value.

Excuse my ignorance, but is this basically a private contract, or can different hospitals 'bid'?

Yes, that seems to fit. Thanks.

Anyone know who the bald-headed, possibly South African(?) psychologist is at 31:30? Says he was part of some group involved with the 2007 NICE guideline.

I'm not sure if it's exactly this part, but someone in the audience talks about how people with 'CFS' have [something] personalities. I can't hear what he says. Did you catch it?