Thread by @JeffLubell_C19

In a Letter to the Editor published yesterday by the Journal of Translational Medicine, I describe my hypotheses about a key source of pain and inflammation in #MECFS that may also play a role in post-exertional malaise (#PEM). 1/ …nslational-medicine.biomedcentral.com/articles/10.11…

My hypotheses are grounded in experience as a caretaker for my daughter with hypermobility Ehlers-Danlos Syndrome (#EDS), #MECFS, #POTS, #Chiari malformation, and #craniocervical instability and my reading of the #MECFS and #lipedema literatures. May also apply to #LongCovid 2/

In a nutshell, my hypothesis is that vascular damage and/or endothelial dysfunction causes interstitial fluid to leak from blood vessels of people with #MECFS, leading to formation of adipose tissue that becomes fibrotic, causing inflammation, hypoxia & widespread pain. 3/

This is the other half of the equation posited by Wirth, Scheibenbogen, and Paul, as well as others, who argue that the neurological symptoms of #MECFS are the result of reduced blood volume stemming from this leakage & endothelial dysfunction. 4/ …nslational-medicine.biomedcentral.com/articles/10.11…

I also propose that leakage of interstitial fluid plays a role in post-exertional malaise by flooding affected tissue, leading to hypoxic conditions. The leakage increases with movement/exercise and when fluid volume is increased as a result of elevated cortisol or estrogen. 5/

The letter is fairly short, so I won’t summarize further here. But if you’d prefer a tweet threat, I covered much of the same ground here: 6/

https://twitter.com/JeffLubell_C19/status/1472191222160805892?s=20

A huge thank you to everyone who commented on the earlier tweet thread and on my Health Rising post exploring the connections between #lipedema, #MECFS, #fibromyalgia, and #EDS. These comments were really helpful in refining the hypotheses. 7/ healthrising.org/blog/2021/12/0…

I would encourage researchers to rigorously evaluate these hypotheses and would equally welcome research that confirms or refutes them. I could well be wrong. But if I’m right, or partially right, the hypotheses would suggest new paths for treatment and research. 8/

Some immediate treatments that could help include manual lymphatic drainage, squeezing of affected tissue, & manual techniques to break-up fibrotic adipose tissue. I am hopeful that researchers could also discover more systemic (and less painful) ways to treat the fibrosis. 9/

Research is needed on the incidence and extent of fibrotic adipose tissue in people with #MECFS compared with controls. The methodology used here to identify subcutaneous adipose tissue in different parts of the body may provide a model. 10/ nature.com/articles/ijo20…

Additional research examining whether and to what extent manual lymphatic drainage, the squeezing of affected tissue, and the manual breakup of fibrotic adipose tissue are helpful for people with #MECFS, #LongCovid, #EDS and #Fibromyalgia would also be very helpful. 11/

A few prior studies of lymphatic drainage for #Fibromyalgia are here 12/: sciencedirect.com/science/articl… and pubmed.ncbi.nlm.nih.gov/19243724/

I would strongly recommend that researchers studying #MECFS, hypermobile #EDS, #Fibromyalgia and #LongCovid reach out to researchers studying #lipedema to discuss ways the literatures could inform each other. 13/

There appear to be high rates of hypermobility in #EDS, #Fibromyalgia, and #MECFS, suggesting that connective tissue disorders may play a role in each. (Citations collected in my Health Rising piece; search for "overlap"). 14/ healthrising.org/blog/2021/12/0…

The usual caveats apply: I am not a doctor; I do not have medical training; I cannot provide medical advice. For more background on what I’m trying to accomplish, see this blog post: 15/ blogs.bmj.com/bmj/2021/09/20…

Elevated estrogen levels upregulate the production of histamine, which increases vascular permeability. This may be another reason for increased challenges at ovulation and before period. See pubmed.ncbi.nlm.nih.gov/22112012/ and ncbi.nlm.nih.gov/labs/pmc/artic… 5.1/

Cortisol also plays a role in promoting vascular permeability, which may contribute to fluid release. 5.2/ pubmed.ncbi.nlm.nih.gov/12386486/#:~:t…

@BendyBrain -- I was just reading your Beyond Bones paper and thought it would be extraordinarily helpful to get your feedback on this blog on possible connections between the 3 disorders you examine (MECFS, Fibro, and EDS) and lipedema. Would welcome an opportunity for dialogue!