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https://www.nytimes.com/2020/03/09/health/hiv-aids-london-patient-castillejo.html?searchResultPosition=2 If there was a genotype that was resistant to MECFS, then perhaps we could undergo bone marrow transplants like this guy.

If someone attends they should press Lipkin about his prediction that he made a couple years ago that there would be a treatment for this disease by now. This type of bluster (a different b word could also be used here) is not helpful— it unrealistically inflates patient expectations. Also...

I don't know the history of this thing, but why are these groups funding her group? @dave30th Have you invited her to respond to your criticisms? Can you petition the journal to release the peer-review comments? EIC seems to be a bit of a self promoter (you google).....

Yup, and i would support an eponymous name. There are a ton of them. https://en.wikipedia.org/wiki/List_of_eponymously_named_diseases They even have an Edwards Syndrome. Thinking out loud...I'm not sure how critical the billing codes are for a disease that has no treatment. If we had...

Good thread with some helpful comments from @adambeyoncelowe 1) I favor a more inclusive approach to diagnosis and to patient selection in research studies. Yes to 2) The important thing now is fund raising 3) The narrower your criteria, the more difficult it is to raise funds, simply...

As the only human in the known universe to actually prefer the name CFS, I offer the following compromise--The Kronic or Kron (which can be used as an adjective--s/he is very Kroned {or Kronned} out). For marketing and fundraising purposes a really horrible sounding name is highly prefered, so...

Is this the thing now— writing one year reviews? I can hardly wait till they start publishing weekly reviews....just imagine how many publications will be generated.

Why didn't the authors conduct a full crossover design?? Did they run out of budget for the second placebo arm (sarcasm intended). @Michiel Tack is correct--the analysis should be conducted at week 4, treatment 8. This is when the RCT ends. (For whatever they were measuring that wasn't...

@strategist Thanks for posting that twitter thread (click on it for full thread). Tweet number 7 indicates that the paper probably wasn't really read. Here is the paper. Bit of an echo chamber on twitter.

.9% is about triple the prevalence of MS and about 2X the prevalence of RA. There’s maybe 15-20 drugs available for these 2 diseases combined. If the prevalence of MECFS was this high pharma would be going crazy to get drugs approved for this disease...

Intranasal mechanical stimulation.... Hmmmmmm I thought that this was a family-friendly website....

I’m wondering if perhaps the manuscript was rejected. I’m guessing it was submitted in August 2019. That’s about 7 months—long enough to do the review, make revisions and have it published.

Where is the breakthrough? Did I miss something? Looks like no suramin trial for CFS in 2020.

Article: https://www.medpagetoday.com/rheumatology/arthritis/84736

https://www.madinamerica.com/2020/02/review-cochrane-wont-publish/

Haven’t read, but how can we determine if we have capillary endothelial dysfunction?

https://www.google.com/amp/s/www.nme.com/news/music/madonna-cancels-lisbon-gig-45-minutes-before-being-due-on-stage-madame-x-tour-injury-2598940%3famp Hmmmm......Please rest Madonna.

Not necessarily a dead end—TCAs can modulate T cells— see this thread https://www.s4me.info/threads/an-investigation-into-the-modulation-of-t-cell-phenotypes-by-amitriptyline-and-nortriptyline-2019-conroy-et-al.13031/

So can we use supplements to increase Docosahexaenoyl-choline?

Except that this wasn't really the conclusion of their study. Based on reading the Results section of the abstract, the conclusion should be "We found that of four commonly used immunosuppressive agents that we tested, only MMF depolarized mitochondria, induced T-cell ROS production and...