Studying ME/CFS in isolation from CCI, tethered cord, Lyme, hEDS, MCAS, mold, etc is a massive mistake. They’re deeply interrelated. Eg, before my fusion, my mold reactivity got worse and worse, to the point that no matter how much I washed them, I was reacting to my bedding. 1/
The sx were classic mold sx for me: insomnia, an electric feeling in my limbs, and the next day, bodywide swelling and pain. It was awful. But then I tried sleeping with a cervical collar, and it solved it. 2/
I’m not saying that I was wrong about reacting to mold — I had clear evidence that mold caused these sx. But my neck was intimately involved. 3/
Post fusion, my mold reactivity isn’t gone, but it’s much better. Interestingly, when I retethered, it got much worse. The dura is rich with mast cells, so when it’s getting tugged on, the mast cells get mad, increasing reactivity. 4/
My guess about the role of my neck is that exposures cause inflammation in my brainstem. When there already wasn’t enough room for my brainstem, it took very little swelling to cause chaos. I also think the inflammation caused the breakdown of the ligaments in my neck. 5/
I also had two very bad concussions as a kid. Perhaps that damaged the ligaments somewhat, reducing the space for my brainstem from early on and making me more susceptible to mold illness in the first place. 7/
That’s just one example of the overlap. If we conceive of these illnesses as unconnected, we blind ourselves to these critical clues about what’s driving them. /end

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More from @julierehmeyer

27 Aug
An update on me: I've continued to have no neurological problems since my second tethered cord release. I also have no post-exertional malaise, though I'm still recovering from surgery and can get tired out fairly easily. I can walk a mile or so with no problem. #mespine 1/
No seizures, no paralysis, no inability to speak, no difficulty breathing.

My mold/MCAS issues have decreased after the three surgeries. I'm back home, after years when I couldn't tolerate sleeping in any buildings. 2/
I don't have significant sleep problems now. Fatigue is only a problem with too much exertion, but that seems to be just part of the healing process, and my tolerance for exertion is steadily increasing. My cognition is working fine. 3/
Read 11 tweets
29 Jan
1/ Paul Garner seems to be describing some form of brain retraining in claiming that positive thinking cured him of ME. He's extrapolating hugely from his own, n=1 case to make claims that are deeply harmful to the ME community and that are ungrounded in evidence.
2/ The tricky thing, though, is that there's something to brain retraining. Many ME patients have benefited from it. The problem isn't the idea that brain retraining can be a useful tool; the problem is extrapolating that brain retraining solves the entire problem of ME.
3/ Plus, of course, that he made other egregious, hurtful statements about ME patients.

This is a scary thing to talk about, because the issues here are subtle, and Twitter is not a good forum for nuanced conversations. Nevertheless, I think it's important to try.
Read 30 tweets
27 Jan
There are lots of ME recovery stories, even though recovery is rare for ppl w/ ME for more than a few years. Often, people who recover are... really annoying. I've remitted 2x, and I've tried to talk about it v carefully. I'd like to suggest some guidelines for recovery stories.
1. What worked for you may not work for others. ME is hetergoeneous. Say that.

2. You may not understand correctly what worked for you. Sometimes ME remits spontaneously, especially at the beginning. Present the evidence for your conclusion, and acknowledge that you may be wrong
3. Every treatment has risks. Give your best assessment of what those risks are for the treatment you chose, even if you didn't experience them.
Read 6 tweets
27 Jan
THREAD: I wrote a piece for @Open_Notebook offering advice to science journalists covering contested illnesses, coming out of 15 years of being both a journalist and a patient. Here are some highlights, plus links to some of the high-quality coverage. theopennotebook.com/2021/01/26/how… 1/
@Open_Notebook When I got #mecfs, I was shocked that science, medicine, and journalism on my illness were all… pretty bad. “I felt as though I had fallen through the looking glass and found that up and down and right and wrong and science and bullshit had scrambled into a nauseating mess.” 2/
@Open_Notebook With long Covid, “journalists will play a major role in determining whether these new chronically ill patients face the same ignorance and disregard experienced by patients with other contested illnesses.” 3/
Read 30 tweets
17 Jan
It's been 13 months since my craniocervical fusion surgery and 7 months since my tethered cord surgery. My diagnoses were craniocervical instability, tethered cord, ME/CFS, MCAS, POTS, and mold illness (which may or may be fully explained by MCAS). 1/n
Before my first surgery, I couldn't sleep inside a house b/c of mold illness/MCAS. I got paralyzed, unable to speak, and barely able to breathe, sometimes 8 or more times a day. This could result from tilting my head back, speaking too much, a loud sound, a tap on the head. 2/n
Traction (pulling my head away from my body) brought me back from these episodes. I couldn't ever be left alone. I wasn't bedbound, but I could do essentially nothing for myself. 3/n
Read 20 tweets
16 Jan
One of the biggest challenges #mecfs has faced is that there isn't a tidy story to organize one's thoughts around. "Fatigue" has been offered up as the story, but it's a TERRIBLE one. Trivializing, false, and vague. 1/
Some percentage of long-haulers will end up meeting the criteria for #mecfs. The big advantage that they have is that they have a better story: they never recovered from a pandemic. 2/
Long-haulers likely do face some challenges that are unique to that virus. There is a lot of heterogeneity among #mecfs pts, so even just from that perspective , it should be expected that their experience won't be identical to any other #mecfs patient. 3/
Read 6 tweets

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