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It's all very bizzare. LDN seems to have a cult following, much like ivermectin has. I think the LDN Trust puts out questionable literature to entice patients.

I developed Raynauds in my late teens or early 20s. I'm not sure I even have it any more as I don't go outside much, especially when it's cold. It never bothered me too much, but it seems to be indicative of some sort of underlying dysfunction that's likely auto-immune in nature.

https://www.bbc.co.uk/news/articles/cx2gky52p5qo "About 15 years ago, Tim Holt-Wilson noticed a "gradual degeneration" in the warmth of his fingers. The 66-year-old, who lives near Eye, in Suffolk, had already been diagnosed with the autoimmune condition Scleroderma - which caused stiff skin...

This is unfortunate sentence syntax.

I love a story with a happy ending.

Putting myself in the hair loss phenotype as a balding man.

I didn't. At the time I was part of the CMRC PAG and some of these thoughts made it back to BACME members via feedback we were asked to give on a talk Vikki McKeever and Peter Gladwell gave. Also, Sue Pemberton, who had by then left BACME, messaged me on the subject of my blog, so it made it to...

I will share again my blog on this Position Paper: https://domsalisbury.github.io/mecfs/bacme_dysregulation/ I did try to be nice.

Where does the 90% figure come from?

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...