With EMEC we are trying to set up a meeting with representatives of The European Federation of Pharmaceutical Industries and Associations (EFPIA). We are compiling a list of drugs that seem most promising for the treatment of ME/CFS and the pharmaceutical companies that make them. An example is bocidelpar ASP0367/MA-0211 by Astellas, a Japanese company that is reportedly interested in collaborating with David Systrom. Another example might be the anti-CD38 antibody daratumumab which the Norwegian team of Fluge and Mella is interested in. There is also BC007 by Berlin Cures, although this line of research has been a bit chaotic or controversial, it might still be worth looking into. Other examples? There once was great interest in Suramin but don't know if this line of research is still being pursued..
Maybe it would be worth contacting Ron Davis team as they had a list of drugs they were considering at some point.
The partial dopamine D2 receptor agonists—Aripirazole (Abilify) brexpiprazole (rexulti) cariprazine (Vraylar) osu6162–at lower doses. Likely many thousand of prescriptions given—response rate is probably around 75%. Improvements range from minor~10% to major—return to work. Problems include tolerance/poop out and weight gain and some insomnia. Some people have now been on low dose Abilify (LDA) for about 3-4 years. People who responded to Abilify generally responded to rexulti. To do a full RCT for Abilify was estimated to cost USD 10 million—OMF applied to NIH for a grant to cover this but was rejected by a reviewer who claimed MECFS is a psychological disorder. https://www.s4me.info/threads/off-l...igue-syndrome-me-cfs-crosby-et-al-2021.18990/ https://www.s4me.info/threads/open‐label-study-with-the-monoamine-stabilizer-‐-‐osu6162-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-haghighi-et-al-2021.18971/#post-322891 https://www.s4me.info/search/13380770/?q=Repurposing+Drugs+for+Post–COVID-19+Fatigue+Syndrome+Methylphenidate,+Duloxetine,+and+Brexpiprazole,+2022,+Manu&o=date Cyclophosphamide—uncontrolled but returned several patients to work. https://www.s4me.info/threads/intra...-study-2020-rekeland-mella-fluge-et-al.14925/ mestinon https://www.s4me.info/threads/neuro...tigmine-2022-systrom-et-al.27497/#post-417773 Please if you have criticisms about the various studies posted here it is probably better to post on that specific thread rather than here. Thanks.
LDN should be first because it has been around unofficially for a long time now. low dose Abilify, then Suramin and Mestinon. The first two drugs already have trials. Abilify has been tested on 101 patients and they just need to repeat that with placebos
Dr Naviaux’s lab website states that they plan to start their suramin trial this year: “Our research suggests that the repeating loop ME/CFS symptoms might be broken by treatment with a new class of medicines called antipurinergic drugs. One of these is a drug called suramin, which will be tested in a randomized clinical trial in ME/CFS patients in 2022.” https://naviauxlab.ucsd.edu/science-item/chronic-fatigue-syndrome-research/ However, I am not so sure it will happen. My understanding of the situation, although I may be recalling it incorrectly, is that Bayer was to sponsor the trial but they stopped manufacturing the drug, so Naviaux’s team went on looking for another manufacturer. There may be more details on Cort Johnson’s blog. Edit: as @NelliePledge mentioned contacting Ron Davis, it may be worth reaching out to Avindra Nath. The results of the NIH intramural study have not been published yet but he has said to Brian Vastag that there were suggestions of drugs to be trialed. However, he seems reluctant to share his findings before publication. https://twitter.com/user/status/1522305361239179264 The following tweet contains a slide with a list of drugs that Avi Nath has proposed for long Covid, which may or may not have been inspired by the intramural study: https://twitter.com/user/status/1538982140486066177 Finally, this review article was published last year; some of the authors declared having received funding from Pfizer: Toogood, P. L., Clauw, D. J., Phadke, S., & Hoffman, D. (2021). Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): Where will the drugs come from?. Pharmacological research, 165, 105465. https://doi.org/10.1016/j.phrs.2021.105465 Discussion thread: https://www.s4me.info/threads/revie...the-drugs-come-from-2021-toogood-et-al.18957/
