News: 2025 Apr 11
Low Blood Volume, MEGC #52, Rapamycin Study, Far-UVC Light, & In Bed I Cut Words
The following are a few items that caught my eye…
Low Blood Volume
Hillary Johnson has done a follow-up article about low blood volume. Low Blood Volume in ME, Part II: Rheology, Morphology and the Third Space expands on the previous article A Momentary Pause in the Act Of Dying: Low blood volume in Myalgic Encephalomyelitis. It's shocking. An interview with David Bell, M.D.
Low blood volume in Myalgic Encephalomyelitis is an important aspect of the disease that more doctors need to understand. Hillary’s new article also discusses the deformed red blood cells. I highly recommend these articles and subscribing to The World of Osler’s Web Substack.
I have also written about low blood volume in my article Hypovolemia in Myalgic Encephalomyelitis: Low blood volume is a biological abnormality.
ME Global Chronicle #52
ME Global Chronicle (MEGC) published Issue #52 Table of Contents for the first quarter of 2025. As always, there is a wide spectrum of articles about research, advocacy, news from various countries, personal experiences, and more.
A few highlights:
Djanko’s cartoons are always appreciated!
A short film by Anil van der Zee titled Fading contemplates the inevitability of illness, disability, decline, and, of course, death. (For those who are sound sensitive, the sound is not necessary.)
News from more than 20 countries is included
Research news from NCNED (The National Centre for Neuroimmunology and Emerging Diseases in Australia)
List of upcoming events
List of Research Science
And a lot more!
Note: I am a co-editor on the ME Global Chronicle - doing what I can as I am able.
Rapamycin Study
Simmaron Research presented a poster at the 2025 Internal Medicine Meeting sharing findings about the effect of Rapamycin on “ME/CFS” patients. Images of the poster and information were posted on X (Twitter) by Stephanie Grach MD MS on April 3. See the poster HERE.
An article in HCP Live about this study offers more insight stating:
“Key Takeaways
Rapamycin administration improved PROMs [patient reported outcome measures] in ME/CFS patients, showing significant enhancements in fatigue, sleep, and orthostatic intolerance over 3 months.
The study involved 40 participants, with rapamycin doses up to 6 mg weekly, demonstrating statistically significant improvements in multiple health scales.
Findings suggest rapamycin's potential in ME/CFS treatment, possibly linked to its autophagy-promoting and mTOR-inhibiting properties.
Further detailed data and subgroup analyses are expected to provide deeper insights into rapamycin's effects on ME/CFS.”
The National Cancer Institute at NIH states the drug is:
“...used to keep the body from rejecting organ and bone marrow transplants. Rapamycin blocks certain white blood cells that can reject foreign tissues and organs. It also blocks a protein that is involved in cell division. It is a type of antibiotic, a type of immunosuppressant, and a type of serine/threonine kinase inhibitor.”
While they used the label ME/CFS, the poster states the patients in the study were diagnosed using the International Consensus Criteria (ICC). These patients, per the ICC, should be labeled as having myalgic encephalomyelitis and not ME/CFS. I asked Dr. Grach on X for confirmation that they used the ME-ICC by Carruthers et al. I have yet to hear back.
For more about the confusion over ME/CFS label see ME/CFS is an umbrella term: Is fruit an apple?
Far-UVC Light
A recent CBS news piece titled Scientists hope far-UVC light could help stop the next airborne pandemic before it starts caught my eye and I thought it is worth sharing.
From the article: “Far-UVC light is a form of ultraviolet light that can kill viruses and bacteria in the air without harming humans.”
I can only imagine a future where people like me who have immune dysfunction can safely enter public spaces without risking catching a virus that our bodies can’t properly clear.
I was glad to see the news included that Professor David Putrino at Mount Sinai Hospital is using this new technology in his clinic.
I have written before about David Putrino in my article Putrino Lab to Open a Center in 2024: May offer services to people with Myalgic Encephalomyelitis. Looking forward to updates on how this Far-UVC light impacts their clinic.
In Bed I Cut Words
Art can have a powerful impact on the way society views an experience. Corina Duyn, long-time ME patient, has produced powerful works of art in a variety of formats over the years. I’m in awe of her creativity that has provided a way to help others understand the experience of living with ME.
She has published a new book entitled In Bed I Cut Words. This, like her other artwork, offers a unique look into her experience of managing with ME while living in a nursing home.
Her website, Corina Duyn: Artist in care, provides examples of her puppetry, writing, videos and more. Her works are worth checking out and sharing with others. This unique approach is one more way to help others grasp the reality of living with ME.
Aiming for a better future…
Colleen
Information provided here or in comments is not to be considered medical advice
I was on Rapamycin for about 6 months and unfortunately did not see any improvement. In fact, my glucose, which has always been normal, went high and my heart showed enlargement in a CT scan while on it. I did not see any improvement in my immune system as well. I decided to discontinue it. My heart and glucose levels are now back to normal again.