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Jennifer Brea🦒 Profile picture
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2 Sep, 4 tweets, 2 min read
The virality of this tweet hearts my heart a little but I am glad we are at least (re)-learning what infections (**not only SARS-Co-V2**) can do.
I deeply, deeply hope we can get provide resources to #longCOVID patients EARLY such that we can 1) not exacerbate their symptoms via misguided treatments (e.g., GET) and 2) prevent surgery for those who develop surgical pathologies.
I also hope the huge crush of patients developing #MECFS #POTS #MCAS #CCI etc in the wake of SARS-Co-V2 can help spur a wave of research and healthcare infrastructure investment to help all the people whose life-changing infection came 2, 3, 4, 5, 10, 20, 30, 40 years ago.
The vast majority of those millions are still...waiting.

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More from @jenbrea

Jennifer Brea🦒 Profile picture
2 Sep
Honestly? Many researchers mainly tap into their own self-sourced ideas. Very few really do the “field work” required to formulate the most interesting and relevant questions. The idea of researching patients without actually listening to patients is bonkers to me.
In reference to:
This is a large part of why the research is so slow. Yes, funding is an issue, but in the #MECFS community, major possible contributors to illness go discussed for 10, 20 years but no researcher touches them. I’m thinking of mold exposure and MCAS as big ones.
Read 12 tweets
Jennifer Brea🦒 Profile picture
27 Aug
This is a very important point. I still come across people who think these pathologies affect a small handful of people. It’s perhaps at least 20% of the #MECFS community, probably higher if intracranial hypertension due to all causes is included.
In our groups (admittedly, self-selecting) I have rarely seen a normal MRI. Even people w/o frank pathology typically all have either congenital or acquired abnormalities (degeneration) that is far more advanced than should be at X age.
For example, it is UNUSUAL to see normal cervical lordosis in our group.
Read 4 tweets
Jennifer Brea🦒 Profile picture
25 Aug
I was raked over the coals by fellow #MECFS-ers for talking about EDS, MCAS, CCI, the brainstem, tissue hypoxia, etc., topics that are now being widely discussed by physicians and researchers, including at this latest IACFS/ME conference.
Still not sure if the problem was the message or the messenger. I always do what I think is right and I am usually guided by dozens upon dozens or journal articles and the stories of thousands of people, which I then synthesize and translate. It’s never just me.
I get that people want physicians and scientists they trust to take the lead. But they do not live in our bodies. What is lost in the gap may well be the cause, the disease, and the cure. This is why I’m done with “patient voice” seat at the table BS. We need to lead.
Read 4 tweets
Jennifer Brea🦒 Profile picture
24 Aug
PEM (post-exertional malaise) may be “exertion-triggered tissue hypoxia.” Yes, I have been saying this! This is rad. Can’t wait to check out the paper… #MECFS #longCOVID
If true, this is probably why Chiari, CCI/AAI, tethered cord, cerebral vascular stenosis, MALS, and Nutcracker Syndrome, et al. can cause PEM in a subset of #MECFS patients: they can all cause tissue hypoxia, producing similar symptoms to other causes of tissue hypoxia.
(*and #longCOVID)
Read 12 tweets
Jennifer Brea🦒 Profile picture
17 Aug
Unbelievable. A tiny cadre of powerful psychiatrists with their legacies on the line are stepping in to try to overturn scientific consensus and the advocacy of tens of thousands of ME patients. UK healthcare is just as broken as US healthcare, just in a different way.
My husband teaches their research in his undergraduate statistics class at Princeton as a case of how not to do science (or statistics). Psychology colleagues of his talk about their work as examples of that field’s replication crisis (alongside US scandals in other sub fields).
They’re either unethical, incapable, self-deluded, poorly trained, or some combination. No one takes their work seriously on this side of the ocean. And yet the grip they have is unbelievable. Apparently in UK medicine, social networks are more important than science or patients.
Read 7 tweets
Jennifer Brea🦒 Profile picture
11 Aug
Not being able to walk long distances, exercise intolerance, and feeling like hell after exertion are very common tethered cord symptoms. (In addition to all of the neurological symptoms and signs.) However, the latter can be subtle, especially if you are…avoiding walking.
People with tethered cord will fail VO2 max tests due to reduced blood flow to the spinal cord and the hypoxia (low oxygen) that results.
Every #MECFS specialist needs to rule this out and/or refer to the appropriate experts, but vast majority do not know how. 99/100 of cases, your neurologists cannot help you, even though clinical signs and symptoms are fairly obvious, once you know what to look for.
Read 10 tweets

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