Thread by @jenbrea

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.

https://twitter.com/jenbrea/status/1278051613848899584

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.

When I emailed the top CPET people they were polite but of the mind that “it was highly unlikely many patients were dealing with this.” Meanwhile, I had multiple CPETs—including one where I had to be taken home via ambulance—ordered by MDs who know nothing about tethered cord.

How can you know how common something is among #MECFS patients if you have no idea how to recognize it when you see it?

I have been very polite about all this stuff for the past three years, in part because I really like our physicians and researchers as humans, and hoped that with time, exposure, and curiosity, they would do the right thing. A small handful have. I can count them on one hand.

Just don’t assume that ANYONE is actively working to sort this particular mess out. If you are a patient that has one of these pathologies, your voice is needed. Talk to your physicians about your experiences. Reach out to the researchers and organizations you support.

Advocate and educate your fellow patients. As it stands now, there is a very good chance if I got sick 20 years FROM NOW, I would a) still be needlessly debilitated for 7 years and b) may not have EVER been diagnosed, my surgeon long retired. That is the trajectory we are on.

Also: most researchers don’t start with the premise of “let me observe these patients and formulate hypotheses.” It’s all about “this is my thing, it’s what interests me, maybe it applies here.”

Saying, “Here’s a pathology, some of us have it, look at all the people GETTING BETTER“ is not compelling if it’s not their thing. The # of people who are saying, “I don’t care what the thing is, I just want to solve the thing” is…again, one hand.