Top Tweets for #mespine
@Naomi_D_Harvey @elljuna Many whey products have gluten additives, frustrating
Lentils and leftovers hit or miss, recipes welcome!
I’m trying an allergy free supplemental shake
This issue may be among further #MESpine metabolic impacts, possible unstable unless surgeries could help, we’ll see
Yay!
347 patient case series from team that works with Dr Bolognese at Mt Sinai. #MEspine #CCI
👏🏼 @BigginsSniggib @jeff_says_that @PutrinoLab
MAESTRO is the largest clinical study in MIT history!
They are collecting a TON of data. Check out everything in the red box. 🤯
The blizzard canceled all flights to New York so my neurosurgery, neurology, endocrinology care week is gone
This as online medical advice for worse neurologic symptoms I have says to seek urgent medical attention — but no neurosurgeon in Iowa will help https://t.co/lts1LL4Qnp
Our brainstem/#MEspine hypothesis paper made it onto @IFLScience! @jeff_says_that @ThosVarley @imMEurMEweallME @arta_semita
Jeff has been talking about this since 2018, so many in the ME/CFS and Long COVID community already knew about these ideas long before we published. I'm happy that we're accomplishing our goal to expand the awareness of the ideas with the publication, though. 🎉
IFLscience has 22 million followers on Facebook and most aren't in the chronic illness community, so hopefully this will get some people's attention who wouldn't have seen it otherwise.
IFL Science: What Causes All The Symptoms Of Long COVID And ME/CFS? The Brainstem Could Be The Key
A new theory has been put forward, suggesting that damage to this vital part of the brain could explain why these conditions affect so many bodily systems'
https://t.co/CQOpcpwbeh
Most of the comments that I've gotten about our #MEspine paper have been along the lines of, "well, what can we do about it?" (especially for people who can't even get in to be evaluated)
It's a huge issue. 😞 People who are bedbound/housebound can't get the imaging necessary for diagnosis. Even if they get diagnosed, most don't have access to affordable treatment options. Even if they have the support and financial means to access treatment, there are so few healthcare providers who can help with mechanical issues that it's hard to get in with them. Even if they can get in to see good providers, there isn't much research on treatment options and many people have multiple issues, so it can be like whack-a-mole. Even if they get access to treatments that work for some, they don't work for everyone.
Here's a thread about what I wish would happen on the access side. We need more research, healthcare providers, telehealth options, mobile imaging, etc.
I wish I had the bandwidth & funding to help push these forward or even better that other people would run with them.
There are some small scale business models in here, but they're not going to be 10xing investments or anything. It's not a big enough market to get investors interested (unless they were the right impact investors), but yet is a big enough problem that it might be hard to do philanthropically.
How can we get people interested in solving this problem?
I really have hope that we can figure out solutions to help people who are housebound & bedbound with possible #MEspine issues.
@IsabelRamirezRD @Really_Richelle @remissionbiome @RenegadeRes
This is particularly important to me because of my interest in #MEspine mechanical issues.
I know many people who have ME/CFS symptoms & PEM from mechanical issues from accidents (not associated with infections). That's a big clue for understanding ME pathophysiology!
Interpreting the findings of this brainstem study is above my pay grade, but one has to wonder if they can be caused by the mechanical compression of the brainstem as in #cci and #aai. #mespine #mecfs #longcovid
Study finds brainstem reduction & deformation in #LongCovid patients aged 20-50.
They found cerebrospinal fluid (CSF) flow velocity is significantly reduced, & deformities in the 4th ventricle & cerebellar peduncles, suggesting impaired CSF dynamics.
https://t.co/4N9eBG2v12 1/
Does anyone know of providers treating CCI non-surgically in or near NYC/Brooklyn?
PT, PRP injections, etc all very welcome. #LongCovid #mespine
Child with #longcovid ends up being diagnosed with all the usual #mespine suspects. Why aren't these priorities for Long Covid researchers?
I’ve answered many questions about the specifics of my son’s #longcovid journey but thought given the continued online dialogue that I would summarize it for future reference. (pic is from the month before this all began)
🧵
Cool conference June 28-29 in DC and virtual, on the biomechanics of CSF flow and the brainstem! https://t.co/LQ0HklvIF2
h/t @CHRomatowski
#longcovid #mespine
Awesome collaboration finds 2 distinct ME/CFS clusters:
"Instability & obstructions at the craniocervical junction may contribute to impaired movement & production of CSF, in turn altering MMP or cytokine levels in either cluster."
https://t.co/Q3VgZZ7Bn2 #mespine #longcovid 1/
Case reports of 9 patients with upper cervical instability who had reverse cervical lordosis showed significant improvement in their symptoms & functionality when the lordosis was improved (non surgically)! https://t.co/mhCpnqb7FQ #mespine #longcovid
Researchers in South Korea found a new path of lymphatic vessels at the back of the nose that serves as a major hub for CSF outflow to deep cervical lymph nodes in the neck! 1/
https://t.co/GFbTkbb5rN #longcovid #mespine
Looking for recommendations for EDS-literate physical therapists in Northern Brooklyn (or virtual)!
Also recommendations for any online resources/videos on neck strengthening exercises for people with mild craniocervical instability! #longcovid #mespine
@royalhansen Someone with more expertise in #MESpine should chime in, but my understanding is that supine blood flow is much less instructive than orthostatic blood flow. And FYI, people with LC should be wary of contrast dyes.
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