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Some discussion here about which meds Jay Goldstein predicted would likely result in tolerance in patients. https://forums.phoenixrising.me/threads/abilify-stanford-clinic-patients.62807/page-33#post-2309930

I am implanted and still alive!

Anyone have dental implants post ME/CFS? Did they heal OK? Just wondering if they heal properly if you are not very active or if you are horizontal for long periods of time. Thanks.

Re NYT article. I don’t know why Maureen Hansen was so stand-offish. If you meet the criteria for MECFS, then you have MECFS. Also unfortunate that Amy P was cited—no evidence for her theories. Also unfortunate that neither Ron Davis nor Robert Phair was cited in the article.

Better title would have been: COVID-19 Will Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

https://www.frontiersin.org/articles/10.3389/fpsyt.2020.00620/full Effects of Trazodone on Sleep Quality and Cognitive Function in Arteriosclerotic Cerebral Small Vessel Disease Comorbid With Chronic Insomnia

https://www.reuters.com/article/us-elililly-alzheimers/lilly-says-alzheimers-drug-slows-clinical-decline-in-mid-stage-trial-idUSKBN29G161 https://www.bloomberg.com/news/articles/2021-01-11/lilly-surges-as-experimental-alzheimer-s-drug-shows-promise

What type of T cells? By activation you mean they are pumping out cytokines? If so, wouldn’t this have shown up on tests? If there is abnormal T cell activation, wouldn’t cyclophosphamide or Campath treat this? Also, what exactly is a hidden compartment? Thanks.

This represents your opinion— it was not the conclusion of the authors of the study.

There are a lot of auto-immune diseases that don’t respond to rituximab like type 1 diabetes and lupus. Fluge & Mella believe there is an auto-immune component to ME/CFS—from the cyclophosphamide paper

They probably have a biomarker now— my guess! Sounds optimistic. Maybe they figured out the Abilify tolerance thing as well.

Abilify can alter sleep but it sounds like he naturally only sleeps 2 hours per day.

Good article. Abilify I believe. Surprised to hear that Whitney only sleeps 2 hours a day. Seems really bad.

Agree with @Bill—probably not a good idea to subdivide patients with the MECFS syndrome into subgroups based on which symptom is the most prominent or disabling— this is what Guido was trying to do (I think).

Correct. I tried to make this same point on a different thread. Plus they are too busy plus there is no incentive for them to conduct trials/publish results.

Maybe Viking HLA genes are different??

https://med.stanford.edu/content/dam/sm/dbds/documents/data-studio/abstract.20201118.pdf Retrospective data analysis of Abilify plus plans for a randomized clinical trial. 74% of patients reported symptom improvement. @Jonathan Edwards —your critical thoughts?

They also need to look at the tachyphlaxis (poop out) mechanism and how to overcome it.

skeptical of this. And this