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Is this really talking about LDN which is used for a rebound effect (as I understand it) of brief, mild inhibition of the receptor, or naltrexone to actually block the opiod agonist's inhibition of trpm3 channel?

Isn't heat-intolerance a common symptom of me/cfs for many? Of course it has many causes. I admit, although largely ignorant, I have always been interested in the TRPs because of the many strange intolerances pwme have - I think of a patient complainng a touch or vibration causes them distress...

I see Cort Johnson has written an article about nasal congestion, non allergic rhinitis and facial pain as it relates to me/cfs. The underlied text is hyperlinked to it. I will try to read it in the next few days. I do see the name Baraniuk, though, who has written the only research paper on...

I get it, that's why i'm saying, there was no particular stressor of any kind, I just gradual became ill. It wasn't a stressful period, I wasn't overworked, no infection etc.. it was quite a nice time in my life, certainly no more than any unremarkable period in anyone's life. I suspect that's...

I have to say I'm always put-off by the default of the idea that me/cfs is 'stress of any kind unresolved'. I wasn't stressed emotionally or physically when I became sick. I just gradually developed me/cfs over several months going about my business. Eventually I did get a big flu, but I was...

In case anyone else was curious. I believe they are going for 100 patients total, so probably less than 50% for part 1 and 15% done for part 2.

Did they mention how far along the intramural study was? I believe it started recruiting in 2016 and were fast approaching 2020.

Almost 2 years on since the 3 year grants were awarded.

It's interesting LDN is already used in me/cfs sometimes, I have often wanted to try campral - a drug that might be a palliative to pain and malaise by modulating gaba a and antagonizing NMDA receptors. Disu is intersting - remember Ron Davis saying CFS genetics look a lot like african sleeping...

Reading that title made me feel gross.

One last thing. Isn't it strange that the SMC cohort had 4x the 'not-followed-up' of SMC + LP? (9 to 2). After all, it's included in the LP arm and you would expect dropouts after LP. If people most often drop-out after are doing worse, why were so many doing worse in the "easier" cohort...

Quick note; study says mild/moderate me/cfs - I count 10 patients with sf-36-pfs of 25 or less - some were 15, one was 5 (wow!) and one was 10. Looks like given the data missing at 6 months, least some of them were included in the study. Am I right that generall sub 30 is the severe me/cfs...

What was the gut bacteria he mentioned? Should be pretty easy to find if it's available and if it does anything. edit: doesn't seem commercially avaiable https://en.wikipedia.org/wiki/3-Indolepropionic_acid

@Trish @Barry @Peter Trewhitt Thanks. It's great to have a place where we can have this kind of discussion and dig a little deeper as patients but still try to find a balance. I didn't mind look into it and I don't mind being wrong. That is part of the process. I'm grateful that people helped...

Thanks to @Trish most of what I’ve said looks fairly explainable. What it looks like now is the patients did swap cohorts, but were counted in their randomized cohort for ITT analysis. The graphs and tables refer to their randomized cohorts minus the consent withdraws and not-followed-ups. I’m...

Thank you, I can check the actual data. I didn't know it was released. I also did not know about Intention-to Treat and Pre-Protocol Analysis. I'll have to have a look into those. It looks like that is explaining where some of my confusion is coming from. The tables and figures are referring to...

Imputed Participation Not knowing exact cohort participation creates problems w/ outcomes. One thing that stands out is cohort numbers for imputed data. Table 2, primary outcomes data references 100 exact participation for imputed data. This is impossible since there must be 103 participation...

Sorry about the image size I hope that's not a problem.

Primary outcome tables and figures Crawley states 39 patients completed the SMC+LP. Figure 1 states that 39 patients received full SMC + LP. 44-46 patients completed SMC. Figure 1 states that 46 patients received SMC. Yet, all non-text material in the paper references a 6-month primary...

I believe this represents the house visit stage. Patients filled out a consent to find out more information, then a researcher would come to their house to talk about the LP, if they accepted they would consent to the study and call a number that would randomize them to a group. I agree, the...