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"
She has had 2 major crashes. These were biphasic events that appear to have caused severe damage lasting years. First major crash (2017) was what made us aware of her illness. She felt very hot in the morning. Then, some time after a long hike, she had whole-body chills/shaking.
She had troubled walking after the crash and within a month, had widespread pain and fatigue, couldn't go to school, etc. Had some sympotmatic improvement thereafter, but never recovered to baseline. Second crash (2020) was even worse. In first phase she was hot and red all over
In 2nd phase, she had whole body chills/shaking plus electric zaps down her arms and what felt like fluid waves (blood or lymph?) that moved up her body. Afterwards, it felt like her body was poisoned. Over past 21 months, she has made very slow but significant progress, but
she's still not back to the baseline pre-second-crash. Day-to-day PEM is a distinct phenomenon. Basically, after most kinds of physical or mental exertion, she feels worse. If we don't treat, feeling gets worse over time and it starts to feel like her tissues are not getting
enough oxygen. It can take a few days for her to feel better after day-to-day PEM, though since we started daily lymphatic drainage, recovery is much faster. We are not sure whether "cumulative exertion PEM" is a truly distinct phenomenon or just an extension of day-to-day PEM.
Cumulative exertion PEM is what happens when you don't listen to your body and engage in more exertion than your body can handle. It can come from a single act of exertion -- say, going out to eat -- or, if you don't rest adequately between exertion sessions, it can come
from a series of smaller exertions that collectively push past the threshold. This is probably the one that most people are more familiar with, and leads to feeling of lactic acid build-up and extreme fatigue, etc. Can take several days or longer to recover.
My hypothesis is that major crashes causes vascular damage and/or endothelial dysfunction and that day-to-day PEM are the result of that damage -- leakages from microangiopathic blood vessels that flood tissues, leading to hypoxic conditions if not addressed.
There may also be some dysfunction in the lymphatic system that inhibits the take-up of the interstitial fluid. I do not know whether the cumulative exertion PEM is a distinct phenomenon resulting from pushing past your aerobic threshold, as suggested by the literature,
or just a more extreme version of day-to-day PEM that results from anaerobic respiration taking place in cells that are flooded with interstitial fluid. I'd love to hear about others' experiences. Perhaps we can crowd source some conceptual progress in understanding PEM?

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)

Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @JeffLubell_C19

Dec 18, 2021
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/
The increased interstitial fluid eventually forms subcutaneous adipose tissue, which becomes fibrotic and painful to touch, leading to additional inflammation that releases mast cell mediators that cause further endothelial damage, in a worsening spiral. 3/
Read 26 tweets
Jun 5, 2021
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…
Most recently, I summarize results of survey of retrospective use of high-dose thiamine among 55 people w/ #MECFS, #Fibromyalgia and #EDS here: healthrising.org/blog/2021/06/0… . Key graph below:
Read 14 tweets
Mar 12, 2021
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…
My hypotheses focus on the role of high-dose thiamine in inhibiting carbonic anhydrase isoenzymes. pubmed.ncbi.nlm.nih.gov/22145674/ . At present this has been shown only in vitro, so studies in humans are needed to confirm.
Read 13 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us on Twitter!

:(