I am exploring treatments for my daughter's EDS & ME/CFS & implications for people with #EDS, #MECFS, and #LongCOVID. Not an MD or professional scientist.
Jan 7, 2023 • 7 tweets • 9 min read
Calling on #LongCOVID patients, advocates, and allies. Can you help us get the word out about this survey? The goal of the survey, which was developed in collaboration with individuals with LC, is to clarify the risk factors for LC in order to identify new treatment avenues.
We've made substantial progress in initial enrollment, but still need additional respondents, including both people with #LongCOVID and people who had #COVID >3 months ago but haven't developed Long COVID. No geographical limitations. Must be fluent in English and 18 or older.
Jan 7, 2023 • 4 tweets • 2 min read
@fereshtehjahan1 Thx! It's interesting that the build-up of fluid seems to be causing brain fog. I wonder why. Is it because of toxins not being removed or more just related to the fluid build-up itself, either flooding cells and creating hypoxic conditions or maybe irritating glial cells or
@fereshtehjahan1 Putting pressure on the brain? I also wonder why fluid is building up now. She has been bed-bound for last 2+ years, and her brain fog has gotten a lot better and been mostly under control over last few months so it doesn't seem likely it's immobility.
Aug 20, 2022 • 22 tweets • 8 min read
It's still early, but I wanted to share some initial indications of a significant breakthrough in the treatment of my daughter's #hEDS & #MECFS. I attribute progress to Calcium D-Glucarate, a supplement known for improving phase 2 detox of estrogen & other steroid hormones. 1/
The usual caveats: I am a patient caregiver, and not an MD or a medical researcher. It is early. This is just one patient. This is a very complicated area. I am sharing not so much to encourage people to try the supplement but rather to encourage more research in this area. 2/
May 14, 2022 • 27 tweets • 8 min read
By far, the most important events in the lifecourse of my daughter's #MECFS were two massive relapse events that severely degraded her baseline level of functioning. Hoping to crowdsource ideas from #Medtwitter and #NEISVoid on this phenomenon and how to study it effectively. 1/
A better understanding of exactly what happens during these events would help us make faster progress in understanding #MECFS and perhaps #LongCOVID. Yet this phenomenon remains dramatically understudied. We need to change this! 2/
May 8, 2022 • 13 tweets • 5 min read
Assume for a moment that an impaired lymphatic system contributes to #MECFS and #LongCOVID, what would we expect to see? And how could we evaluate the merits of this hypothesis? Hoping to refine these ideas through the wisdom of #MedTwitter and #NEISvoid 1/
To be clear, I am not proposing that an impaired lymphatic system is the single or ultimate cause of ME/CFS and LongCOVID. Rather, my hypothesis is that it contributes to the overall syndromes along with endothelial dysfunction, inflammation and other well-recognized factors 2/
Apr 30, 2022 • 12 tweets • 4 min read
A question for people with #MECFS or #LongCOVID: in your experience, is post-exertional malaise a single phenomenon? Or is it possible there are distinct phenomena that are not being adequately distinguished, impeding understanding? #NEISvoid
With my daughter -- who has #hEDS, #MECFS, #POTS, etc. -- we have observed at least 2 and possibly 3 separate phenomena that all seem to fit the description of #PEM. Let's call them (a) "major crash," (b) "day to day PEM" and (3) "cumulative exertion PEM"
Jan 25, 2022 • 18 tweets • 11 min read
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/
Dec 18, 2021 • 26 tweets • 9 min read
This thread outlines my hypotheses on how leakages from microangiographic blood vessels contribute to pain, inflammation and post-exertional malaise in people w/ #MECFS and #LongCOVID. This mechanism is most pronounced in people with a connective tissue disorder. 1/
The core of my hypotheses is that COVID-19 or other viruses cause damage to endothelial cells in blood vessels, which increase their permeability, leading to the release of interstitial fluid which floods affected tissue, creating hypoxic conditions that trigger inflammation. 2/
Jun 5, 2021 • 14 tweets • 7 min read
I have tried to assemble the evidence base to support conducing an RCT of high-dose thiamine for people with #MECFS, #Fibromyalgia and #EDS. I would appreciate feedback on whether the case has been made, and if not, what additional evidence would help.
I document existing RCT evidence (for IBD fatigue) and hypotheses for why it could work for people with ME/CFS, Fibromyalgia and EDS here: healthrising.org/blog/2021/04/1… . More technical discussions here: medium.com/eds-perspectiv… and here: medium.com/eds-perspectiv…
Mar 12, 2021 • 13 tweets • 6 min read
The medical journal Alimentary Pharmacology & Therapeutics published my letter to the editor today exploring some hypotheses on why high-dose thiamine may reduce fatigue in patients with diverse immunological and neurological conditions. onlinelibrary.wiley.com/doi/full/10.11….
My letter comments on a groundbreaking RCT which found that high-dose thiamine reduced fatigue in patients with quiescent IBD. onlinelibrary.wiley.com/doi/abs/10.111…. The authors' response to my letter can be found here: onlinelibrary.wiley.com/doi/10.1111/ap…
