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Because it also aids in “improved cognition, as evidenced by increased processing speed and improved mental clarity.” at least in PWS, i.e., less brain fog.

Here is a link to the paper they published. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6478354/

https://blogs.scientificamerican.com/observations/a-streamlined-pathway-to-drug-approval/ Author advocates for using patient experience data and open trials in lieu of RCT.

https://www.pharmacytimes.com/news/fda-approves-pitolisant-for-daytime-sleepiness-in-patients-with-narcolepsy Wonder if this could help with fatigue in mecfs?

@Robert 1973 @RDP mentioned on PR that he had submitted a trap paper for review, but that the journal was having difficulty finding reviewers with a background in both MECFS and system modeling, so the review is delayed a bit apparently.

https://www.nytimes.com/2019/07/22/upshot/health-facts-importance-persuasion.html?searchResultPosition=1 Interesting....

https://www.espn.com/soccer/fifa-womens-world-cup/story/3887627/akerschastain-to-take-part-in-new-cte-study I thought Michele Akers has CFS? Maybe it is CTE or both? BTW Congrats to the US Women’s football/soccer Team...condolences to the English and other fans here

https://www.sciencedaily.com/releases/2019/07/190701144521.htm High doses of 60 plus-year-old chemo drug found to spur immune system attack on lymphoma New mechanism found for cyclophosphamide for cancer treatment

Here is the foundation. No specific MECFS groups listed. Topic for another thread I guess, but isn’t “chronic Lyme” just MECFS with a Lyme infection trigger? Better for overall research funding if Lyme groups could merge with MECFS groups. https://theavrillavignefoundation.org/partners/

https://www-m.cnn.com/2019/06/25/entertainment/avril-lavigne-new-tour/index.html?r=https://www.cnn.com/

critical, vital research..... Probably cost $100-200,000 to do this incl. pay for the six researcher's time---next time please just have them write a check directly to OMF, so much more efficient.

sounds like Cortene maybe not so much http://birdbeeme.com/hello-again/ Nice, sensible blog post here on her web site (esp. point about positivity) http://birdbeeme.com/how-to-treat-a-chronically-ill-person-what-to-do-and-not-do/ (not Cortene related--please split post if needed)

Hmm I guess I missed this? Also agree with above mentioned reddit comment that they should engage here—I don’t usually check reddit.

https://www.nytimes.com/2019/06/20/health/horns-cellphones-bones.html?action=click&module=News&pgtype=Homepage Not CCI!

Thanks—I think I remember that one...

I will write an email to the author--is it OK if I cc you @Jonathan Edwards--thanks.

Do we have an email address for Chris @ OMF? Thanks

https://www.proactiveinvestors.com/companies/news/222245/hemispherx-biopharma-issues-updates-for-ongoing-immunotherapy-trials-of-its-drug-ampligen-222245.html Hemispherx Biopharma issues updates for ongoing immunotherapy trials of its drug Ampligen New uses for ampligen

@Andy Thanks for finding/posting this article.... CL=cardiolipin Now if only we had a compound that could bind to cardiolipin and increase and improve mitochondrial respiration and function......;);););)

Some posts discussing forum culture have been moved or copied to the Rule 5 discussion thread. If you want to post about forum culture with respect to discussion of experimental drugs, please do so there. @Alvin I agree. I tried to make the point a week or so ago here...