We should take some of the most replicated findings in #MECFS and study them in #longCOVID patients. Some of these findings, if also present in #longCOVID, *could* potentially imply avenues for symptom management or therapeutic treatment.
Here are a few that might be interesting:
1️⃣Low serum carnitine: me-pedia.org/wiki/Carnitine
2️⃣ Low natural killer cell function: me-pedia.org/wiki/Natural_k…
3️⃣ Elevated lactate (blood, brain): me-pedia.org/wiki/Lactic_ac…
4️⃣ Cerebral hypoperfusion: me-pedia.org/wiki/Brain#Blo…
6️⃣ Increased mast cell populations: pubmed.ncbi.nlm.nih.gov/27362406/
7️⃣ Elevated muscarinic and B2-adrenergic receptor autoantibodies (also found in #POTS): me-pedia.org/wiki/Acetylcho…
8️⃣ Intestinal dysbiosis: me-pedia.org/wiki/List_of_a…
9️⃣ Peripheral endothelial dysfunction: onlinelibrary.wiley.com/doi/full/10.10…
🔟 Low cardiac output/pre-load failure: me-pedia.org/wiki/List_of_a…
11. Small heart syndrome: me-pedia.org/wiki/Small_hea…
12. Elevated IgA (corresponds to illness severity): me-pedia.org/wiki/Immunoglo…
13. Low red blood cell magnesium: me-pedia.org/wiki/Magnesium
14. Impaired pyruvate dehydrogenase expression: me-pedia.org/wiki/Pyruvate_…
15. Increased glycolysis (anaerobic respiration): me-pedia.org/wiki/Glycolysi…
16. Reduced liver volume: tandfonline.com/doi/abs/10.108…
17. Increased risk of death from heart failure (average age, 58.7, conditional on having heart failure): pubmed.ncbi.nlm.nih.gov/16844674/
18. Cytokine dysregulation: me-pedia.org/wiki/Cytokine
19. Persistent infection (enteroviral): me-pedia.org/wiki/Enterovir…
20. Neuroinflammation: me-pedia.org/wiki/Brain#Inf…
There is so much more than this. Here is a partial list: me-pedia.org/wiki/List_of_a… (many findings aren’t even on MEpedia yet, let alone this page—but anyone can contribute, so have a go!)
I want to underline the importance of #longCOVID researchers doing thorough reviews of the #MECFS, #POTS, #EDS, #MCAS, #fibromyalgia and #PTLD literatures so they can cite relevant research and compare and contrast their findings, embedding them within 50+ years of context.
I also want to underline the history of 75+ outbreaks (me-pedia.org/wiki/Epidemic_…), which resulted in a % of those infected developing the attached symptoms, many of which should look...awfully familiar to anyone who has #longCOVID or treats people who do.
As well as the importance of recognizing the many possible comorbidities and overlapping syndromes that #longCOVID patients may be developing or are at risk for. me-pedia.org/wiki/Comorbidi…
Here’s how I think about this in the context of #MECFS:
Here’s how I think about this in the context of #longCOVID (as well as #MECFS):
Almost completely unstudied in #MECFS, but I believe of eminent importance, are mast cells (me-pedia.org/wiki/Mast_cell) and connective tissue (me-pedia.org/wiki/Collagen).

I think they help explain the “multi hit” hypothesis of #MECFS, which should be a hypothesis in #longCOVID, too.
Here’s a bit more on the multi-hit hypothesis/equifinality: medium.com/@jenbrea/onset… (skip to the second half or read Parts I & 2).
Finally, it is estimated that 50% of #MECFS patients meet criteria for #hEDS or #HSD, me-pedia.org/wiki/Ehlers-Da…

Enough physicians are seeing connective tissue disease in #longCOVID, there’s a new ICD code for it:
Inflammatory connective tissue damage, at multiple sites, causing a dizzying array of possible pathologies unique to each patient, that some patients *will ‘spontaneously’ heal from with time, but others will not, with an overlay of #MCAS, might just be was pathogens can do...
If you got to the end, congrats!! What are other major findings/areas of inquiry in #MECFS #POTS #EDS #MCAS #fibro #PTLD that you think #longCOVID researchers and clinicians should know about?
Also gonna leave these links here...
1️⃣US ME/CFS Clinician Coalition: mecfscliniciancoalition.org
2️⃣#longCOVID and #MECFS: Understanding the connection: meaction.net/long-covid-me-…
...and copy in some cool folks in research & medicine. Please share with any colleagues who might be interested. I think engaging with this literature is so important. @evolutionarypsy @ahandvanish @YoniFreedhoff @ScottGottliebMD @ShannonOMac @Dr2NisreenAlwan @trishgreenhalgh
Do any of these findings surprise you?

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More from @jenbrea

23 Jan
A little at a loss for words. I don’t disagree with everything she is saying—it’s important to recognize that hypermobility is a widespread trait in the population and doesn’t necessarily mean disability—but ppl w/ EDS see these traits all around them. Image
If these associations haven’t been well-established in the literature, perhaps that’s important work to fund?

Hoping @exceedhergrasp1 that your work can touch on this.
Talk on #hEDS, FII, and child abuse, taking a critical eye toward how hEDS diagnosis in kids may be being used to shelter abusive parents from child protection proceedings:
Read 6 tweets
3 Jan
I agree with this. Part of the problem, though, is many of us have symptoms that our primary care doctor isn’t comfortable with. I’ve gone to urgent care before only to be sent to the ER. Eventually you learn that you are supposed to go home and “live with it” until you die.
There is no place in the medical system for people living with dangerous (but not immediately life-threatening) symptoms. Many of us need hospital admission, testing, and observation, but that essentially never happens.
I am sure there are other examples, but if you have Chiari, CCI/AAI, and/or occult tethered cord causing intermittent paralysis, severe central apnea/Ondine’s curse, dysphagia, blackouts, the ER will not take you. Neurology will not treat you. You can die, but you probably won’t.
Read 7 tweets
9 Dec 20
Genuine question: why is it so difficult for doctors to believe patients who are having a hard time breathing, not due to lung or cardiovascular problems, but rather, central apnea? It seems to be a fairly simple problem to demonstrate and measure.
Central apnea was one of my main complaints following my thyroidectomy. When I laid flat on my back, I would become paralyzed and locked in a perpetual cycle of repeated apneas lasting 30-60 seconds.
We had no idea what was going on—it is truly terrifying to not be able to tell your diaphragm muscles to contract at will—and after a few days, it seemed to be getting worse. I stopped being able to sleep, so one night, we went to the ER.
Read 18 tweets
8 Dec 20
In one of my groups, we have a woman with profound urological symptoms, pain, and gait problems. Positive Babinski. She is trapped in an NHS hospital in agony, untreated. They won’t give her a urodynamics test. Her neurologist’s assessment? It’s psychosomatic.
Another woman is having profound breathing problems, likely due to central apnea (very similar to what I had). She can only inhale four times a minute. Gets worse when laying flat. She is unable to get anyone to take her seriously. They’ve decided it’s psychosomatic.
I already know that if she has Chiari or CCI, she is very unlikely to have access to surgery in her country, even if that is what she needs.
Read 6 tweets
7 Dec 20
Folks concerned about my advocacy for structural, neurological diagnoses, for #MCAS and connective tissue disorders, or for "#MEspine"––I really do want to understand what is at the heart of this. Frankly, it has been hard.
There is a lot of misinformation floating around (or simply lack of education/awareness––again, it's a lot of different conditions, and I know next to nothing about most of them, other than the ones I happen to have). Image
I see a really big gap between how American patients are responding to this information v. patients in the UK & Europe, and I don't fully understand all of the reasons for that. I think that's worth discussing amicably, if we can.
Read 37 tweets
6 Dec 20
Yoga was a very bad idea🤦🏽‍♀️
I can walk 14 miles in a day (but don’t recommend it!). I was able to build up to doing vinyasas like I can kind of do vinyasa...but all that twisting stuff? Bad, bad.
The weird thing is, since doing it, I can essentially tug on the fascia in my feet via upper body motions. I got on a call earlier today with two friends who have EDS and started to say, ”I know this sounds weird, but...”
Read 4 tweets

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