Search results

Thread from Ben H here

New update from Ron Davis—they are going to test all FDA approved drugs to see if they can overcome the metabolic trap using yeast cells.

That WSJ piece was bad, real bad.

Some people have had withdrawal issues and needed to restart Abilify to control symptoms (RLS) even though Abilify was no longer effective for MECFS. With psychotropic meds a lot of time the problems (akathisia/TD) are associated with withdrawal not with side effects while taking.

NY Times Long Covid Is Not Rare. It’s a Health Crisis. Wonder if @Jonathan Edwards could write a letter to the editor about this op-Ed stating that Long Covid is not a useful term since it incorporates several conditions and that post Covid people with MECFS symptoms most probably have MECFS.

https://www.researchgate.net/profile/Joshua_Leisk/publication/350043016_The_true_nature_of_an_autoimmune_disease/links/604d0d31a6fdcccfee7d03be/The-true-nature-of-an-autoimmune-disease.pdf?origin=publication_detail Preprint—not peer reviewed. Abstract Here we propose a hypothetical model...

J & J one and done—no probs at all.

Hi @Nixxy What dosage of DCA are you taking? Thank you.

Relevance to the MECFS metabolic trap theory?

This is the researcher he mentions https://chemistry.stanford.edu/people/chaitan-khosla https://web.stanford.edu/group/khosla/cgi-bin/

Looking for funding for Abilify study....

What evidence do you have that these four studies are not, in fact, MECFS studies? MECFS is agnostic with respect to the trigger.

I’ll save the UK a lot of money here. Long Covid is Covid-triggered MECFS.

https://www.prnewswire.com/news-releases/paxmedica-announces-positive-results-from-phase-2-trial-of-pax-101-iv-suramin-in-children-with-autism-spectrum-disorder-asd-301224425.html PaxMedica Announces Positive Results from Phase 2 Trial of PAX-101 (IV suramin) in Children with Autism Spectrum...

Maybe doesn’t provoke symptoms because it might be a minor component relative to other bigger factors that are treated by cyclophosphamide.

Probably not a good idea to go on and off antipsychotics repeatedly like this—may lead to long term problems with withdrawal and kindling. https://en.m.wikipedia.org/wiki/Kindling_(sedative–hypnotic_withdrawal)

Around 2mg. About 4 months.

Going on and off antipsychotics is not a good idea... https://www.mind.org.uk/information-support/drugs-and-treatments/antipsychotics/coming-off-antipsychotics/ I stopped taking Abilify after it stopped working and now have insomnia and hot at night feeling (like night sweats), which I didn’t...

Most/many people with MECFS respond positively to steroids—we’ve already discussed this and you said you weren’t sure about the mechanism.

To clarify—comment wasn’t directed at Trish—sorry for any confusion.