On 29th July, The Sick Times website published an article covering information on clinical trials using Rapamycin and also shared one patient's experience taking this medication.
Extracts
Rapamycin is a potent anti-cancer drug and immunosuppressant that has been used to prevent organ rejection for decades, usually at a dose of a few milligrams per day.
Now, scientists are investigating it as a treatment for Long COVID and myalgic encephalomyelitis (ME). Two clinical trials are currently underway — one led by Simmaron Research in Nevada and another by Mount Sinai’s Cohen Center for Recovery from Complex Chronic Illness (CoRE) in New York.
Like any potential treatment, however, it is unlikely to work for everyone. One person with ME who spoke to The Sick Times anonymously reported significantly worse symptoms after trying it.
Simmaron Research provided a sneak peek into its ongoing clinical trial via a preprint in June. Among 40 people with ME taking low-dose rapamycin over three months, 29 (72.5%) showed improvements in fatigue, post-exertional malaise, and orthostatic intolerance. The clinical trial will include around 120 participants overall and is expected to take as long as two years.
MEA Comment
There are now a large number of clinical trials taking place to assess the safety and efficacy of drugs that may be of use in the treatment of Long Covid, and in some cases ME/CFS.
While there are some theoretical reasons why rapamycin (Sirolimus) might be useful in the treatment of Long Covid and ME/CFS, and these are outlined in this article, it's important to also note that this is a powerful drug that can cause serious side effects.
So, this isn't a drug that doctors are going to be willing to try before we have results from some high quality clinical trials that confirm both safety and efficacy.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
Further Information
- The ME Association: Rapamycin Pilot Treatment Trial for ME/CFS | November 16, 2023