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Not cheap. https://www.fiercepharma.com/sales-and-marketing/j-j-undercuts-celgene-s-pomalyst-135k-per-year-darzalex-price

https://www.insideedition.com/drew-pinsky-among-covid-19-long-haulers-with-lingering-symptoms-i-am-forced-to-lie-down-every-hour Drew Pinsky Among COVID-19 ‘Long Haulers’ With Lingering Symptoms: ‘I Am Forced to Lie Down Every Hour or Two'

Might be reversible somewhat. A bunch of us got a lot of relief from Abilify—Martin (paused_me) went from severe bedbound to going to work. I don’t think you would get a similar response in MS from any of their meds. I agree with the discussion of PEM. I’m not really much an acute PEM person...

I’ve mentioned this before but it would be helpful if OMF put out an official quarterly or biannual newsletter. Something short would be fine.

I have a feeling that OMF might be closing in on a biomarker. But if there is a biomarker and it reflects something downstream, is it possible that the biomarker might not be useful in identifying treatments? Are there examples of other diseases where a biomarker was found, but it was not...

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).