I recently recorded a chronic illness vlog, showing an honest view of my life during an unexpected relapse of my ME/CFS. I usually feel better in spring and summer, so this month-long crash in April and May was a big (and unwelcome) surprise.
Frustrated by yet another relapse, especially during a time of year when I usually feel pretty well, motivated me to dive into some online research of newer treatments being studied for ME and long-COVID. I was specifically focused on treatments that could help to normalize immune function. These relapses of mine (usually in fall and winter) are always characterized by sudden-onset of flu-like symptoms, including sore throat, swollen glands, and severe flu-like aches. Those kinds of immune symptoms indicate that the immune system is over-active, so that's what I was focusing on: how to calm down an upregulated immune system in ME/CFS.
After reading some recent articles, I took a closer look at 3 different treatments that are already available for other conditions and are being studied for ME/CFS and long-COVID: metformin, fluvoxamine, and rapamycin. I read article summaries, watched videos, and looked at research studies. Having narrowed my search down to those three (that had been mentioned in one study as having the potential to correct immune dysfunction in ME), I asked patients in several online patient groups if anyone had tried any of these treatments for ME and what their experiences had been.
The results of this informal survey were very interesting:
Of the 3 people who'd tried fluvoxamine, none said it helped.
Of the 20 people who'd tried metformin, 4 (25%) said it helped them.
Of the 15 people who'd tried rapamycin, 8 (53%) said it helped them. We have a winner!
Besides my own survey, a study using rapamycin to treat ME and long-COVID also had good results.
So, I took all that information to my primary care doctor. Fortunately, she is incredible, listened carefully, looked at the studies I'd printed and my own data from patients, and said, "This sounds great! Let's give it a try! If it helps you, then I can try it with some of my other patients." (she's great!). I started with a tiny dose, following the protocol they used in the study, so I haven't seen any effects yet, but I am recording another chronic illness vlog to document whatever effects (positive or negative) I experience.
NOTE: Rapamycin is the name used in research. The generic name is sirolimus, and the brand name available commercially is Rapamune. You have to get it from a specialty pharmacy (mine was fully covered by insurance and cost me nothing).
So, here is my vlog, following my relapse, my research into new treatments, and my visit with my doctor. You can watch it on YouTube or I will include it below:
For reference, here are some of the resources I read or watched about these treatments & others:
- Are All Roads Leading to the Immune System and the Blood in ME/CFS? - article on Health Rising
- "Screaming Immune Activation": Major Lipkin Study Finds Major ME/CFS Systems Folding Under the Stress - article on Health Rising
- A Rapamycin Resurgence: An MD Moves the Needle on His ME/CFS - article on Health Rising
- mTORc1 (TorS) - Unifying Paradigm for PASC, ME/CFS, PAIS - published study about an underlying issue that rapamycin directly targets
- Targeting Autophagy: A Clinical Trial of Low-Dose Rapamycin for ME/CFS, Long-COVID, and IACCIs - a video featuring the study's authors that explains the details of the clinical trial: dosing, side effects, improvements, and more.
I have written before on this blog about effective treatments that target the unique kind of immune dysfunction in ME/CFS and long-COVID. All of those posts are linked in this Post on Treating Immune Dysfunction, which includes 3 inexpensive, readily available treatments that have helped my son and I over the years, plus resources on treating underling infections.
Do you have immune (flu-like) symptoms?
Have you tried any of the treatments listed here - or anything else that has helped?
Please share in the comments below.
