Discover and read the best of Twitter Threads about #MESPINE
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Gonna do a quick š§µ on hip labral tears, since I recently got diagnosed with this
There's frequently a long diagnostic delay for these types of injuries
They are also relatively common in people with EDS, hypermobility, and/or connective tissue disorders
#NEISvoid
There's frequently a long diagnostic delay for these types of injuries
They are also relatively common in people with EDS, hypermobility, and/or connective tissue disorders
#NEISvoid
First, what the heck is a "hip labral tear"?
Ok so the hip joint is a ball and socket joint, which is what lets our hips rotate in multiple directions
There's a layer of cartilage lining the joint acting kinda like the shock absorbers on a car
It helps protect the hip bones
Ok so the hip joint is a ball and socket joint, which is what lets our hips rotate in multiple directions
There's a layer of cartilage lining the joint acting kinda like the shock absorbers on a car
It helps protect the hip bones
The cartilage lining your hip joint is called the "labrum"
And it basically wraps around the top of your femur (technically the "femoral head") inside the ball and socket joint of the hip
This cartilage can tear, and that is called a "hip labral tear" or "torn labrum"
And it basically wraps around the top of your femur (technically the "femoral head") inside the ball and socket joint of the hip
This cartilage can tear, and that is called a "hip labral tear" or "torn labrum"
When I got #LongCovid, it felt like I began to fall apart. But that was not only figuratively, I really was, literally.
Now I know the status of my neck- and spine. And itās very seriously damagedā¦1/
#EDS #MEspine #MECFS #hypermobility
Now I know the status of my neck- and spine. And itās very seriously damagedā¦1/
#EDS #MEspine #MECFS #hypermobility
Following imaging & evaluation at @Clinica_Teknon I have been diagnosed with -
1) CCI (Cranio-Cervical Instability) and Cranial Settling.
This means that my skull, C0, is sinking down, pressing on my spine and compressing my brainstem.
1) CCI (Cranio-Cervical Instability) and Cranial Settling.
This means that my skull, C0, is sinking down, pressing on my spine and compressing my brainstem.
2) AAD & AAI (Atlanto-Axial Dislocation and Subluxation).
This means that my C1 & C2 vertebrae are misaligned and dislocated to the left.
This means that my C1 & C2 vertebrae are misaligned and dislocated to the left.
1) When astronauts go into space, they gain 2 inches height because their SPINES expand in microgravity. adventhealth.com/practices/adveā¦.
2) Herpes reactivation is extremely common in astronauts. Herpes titres INCREASE the more time spent in space/on the space station. However, CD4+, CD8+, T-cells and NK cells all drop. hhv-6foundation.org/latest-scientiā¦
Tethered spinal cordā¦ released #longcovid
After learning from the #MEspine #MECFS community and their experiences post-viral, and many learning they have a connective tissue problem, I hit the ground running and wellā¦ here I am.
Thank you @TheCleanFoodist @karenlubell @TheArghonaut @julierehmeyer @jeff_says_that @jenbrea @kmaclean5 @ellavnorton @NoGoldChainz and many others who shed light onto this process as to what can happen when one gets exposed to a pathogen and doesnāt recover š
Big news!
We are *thrilled* to announce the $4.8 million in research awards for #LongCovid & associated conditions from our Patient-Led Biomedical Fund today!
These were decided by a panel of 15 patient-experts & we're funding 9 exceptional projects!
patientledresearch.com/press-releases/ 1/
We are *thrilled* to announce the $4.8 million in research awards for #LongCovid & associated conditions from our Patient-Led Biomedical Fund today!
These were decided by a panel of 15 patient-experts & we're funding 9 exceptional projects!
patientledresearch.com/press-releases/ 1/
1) A project looking at microbial metabolites as disease-modifying factors in #LongCovid.
2) A project to unravel the pathophysiology of post-exertional malaise (PEM) in Long COVID and ME/CFS, including looking at blood and muscle biomarkers.
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2) A project to unravel the pathophysiology of post-exertional malaise (PEM) in Long COVID and ME/CFS, including looking at blood and muscle biomarkers.
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3) A grant to characterize non-restorative sleep in post-viral disease.
4) A project to look at the impact of surgery for stenosis on ME/CFS symptoms. #MESpine
5) A project to look at altered T cell responses in #LongCovid and ME/CFS, including T cell exhaustion.
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4) A project to look at the impact of surgery for stenosis on ME/CFS symptoms. #MESpine
5) A project to look at altered T cell responses in #LongCovid and ME/CFS, including T cell exhaustion.
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I hate putting symptom stuff on Twitter but going to bc itās so consistent & weird & I need insight:
When I get accidentally overdo it physically/with cardio, I get a feeling of my brainstem being in a grip & my head filling up with pressure. 1/
#NEISvoid #LongCovid #pwME
When I get accidentally overdo it physically/with cardio, I get a feeling of my brainstem being in a grip & my head filling up with pressure. 1/
#NEISvoid #LongCovid #pwME
The brainstem sensation is most specific - it feels like someone is gently squeezing it, or like someone had previously hit me in the back of my head.
In the worst times, but not always, this comes with vertigo and vision issues.
It doesnāt seem like PEM bc itās instant. 2/
In the worst times, but not always, this comes with vertigo and vision issues.
It doesnāt seem like PEM bc itās instant. 2/
An example: I lugged a suitcase up 4 flights of stairs, & my heart rate hit 150 (I know, I wasnāt thinking).
By the top of the stairs I had the brain feeling and it lasted for about a day (was in bed the whole time). 3/
By the top of the stairs I had the brain feeling and it lasted for about a day (was in bed the whole time). 3/
I donāt understand why every #MECFS & #LongCovid patient presenting with the classic neuro-immune & vascular symptoms, arenāt immediately sent for screening for:
- POTS
- EDS/hEDS
- EBV & HHV reactivation
- Microclots & hyperactivated platelets
- ā¦ what else did I miss?
- POTS
- EDS/hEDS
- EBV & HHV reactivation
- Microclots & hyperactivated platelets
- ā¦ what else did I miss?
Adding summary from your suggestions:
- Further common co-morbidities:e.g. MCAS
- Further infection-onset disease: e.g. Lyme, Bartonella, tick-borne
- Symptom detail (unlock treatment!): e.g. Chronic Epipharyngitis , Chronic Pharyngotonsillitis
Adding: #MESpine #CCI etc too
- Further common co-morbidities:e.g. MCAS
- Further infection-onset disease: e.g. Lyme, Bartonella, tick-borne
- Symptom detail (unlock treatment!): e.g. Chronic Epipharyngitis , Chronic Pharyngotonsillitis
Adding: #MESpine #CCI etc too
Adding the importance of testing and screening for common dysautonomic, neuro-endocrine and autoimmune diseases, including this excellent list here from @Dysautonomia:
#TreatME #TreatLongCovid #LongCovid
#TreatME #TreatLongCovid #LongCovid
Is anyone studying post-COVID ossification disorders?
This paper is fascinating - they found elevated cytokines contributed to an ossification disorder called OPLL.
(The cytokines: IL-6, IL-1a, basic fibroblast growth factor, & RANTES). #MEspine
pubmed.ncbi.nlm.nih.gov/34919077/
This paper is fascinating - they found elevated cytokines contributed to an ossification disorder called OPLL.
(The cytokines: IL-6, IL-1a, basic fibroblast growth factor, & RANTES). #MEspine
pubmed.ncbi.nlm.nih.gov/34919077/
cc @jenbrea @Be_Kinderr you may be interested!
Adding a few related links:
"Immunological Contribution to Heterotopic Ossification Disorders"
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"Immunological Contribution to Heterotopic Ossification Disorders"
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So excited to watch this interview between @polybioRF s @microbeminded2 and @MS_SouthNassauās @RuhoyMD that Iām going to live tweet it. Dr. Ruhoy is a neurologist with a Ph.D in environmental medicine who works with #longCOVID #mecfs #EDS patients.
Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. Sheās even a certified medical acupuncturist! She now helps lead a neurosurgery practice. ššš
Ruhoy: āI was an environmentalist from when I was very young and I believe that the world around us plays a role in our health. Even before I was a doctor, I would always try to find ways of living a healthier life. I saw no reason why I couldnāt combine it.ā
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/
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/
Over the next 3 days we'll be tweeting the IACFS/ME conference! The amazing lineup is available here: iacfsme.org/2021-iacfsme-vā¦
Tweets by @AlisonSbrana, @ItsAngInLA, & @ahandvanish.
Follow this thread! #LongCovid
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Tweets by @AlisonSbrana, @ItsAngInLA, & @ahandvanish.
Follow this thread! #LongCovid
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Dr. Jarred Younger is up to talk about imaging techniques for neuroinflammation. He has found a way to visualize elevated temperature in the brain and found that people with ME have pockets of heat across the brain - up to 100.8F!
This is related to overactivated microglia.
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This is related to overactivated microglia.
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He talks about how we're repeating research in #LongCOVID and how we need to be focused on treatments & clinical trials right now, prioritizing the drugs we think will work, which he says there are a ton of. We can't wait for a perfect biomarker before we start trials.
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This a really great overview of the metabolic effects of hypoxia, which could explain many of the symptoms of #MECFS. Hypoxia can result from many different neurological and vascular conditions, including essentially all of the neurological & vascular syndromes common in #EDS.
For example, any condition that causes āneural strainā (such as tethered cord syndrome and CCI) can cause hypoxia due reduced perfusion (blood flow) to the affect area. When itās your entire spinal cord + brainstem thatāsā¦a pretty big deal! #MEspine
A range of vascular conditions can also cause reduced perfusion. e.g., Median Arcuate Ligament Syndrome (MALS) and Nutcracker Syndrome, also associated with EDS, can cause hypoperfusion of the gut/internal organs. (These can also cause #POTS and exercise intolerance.)
This is an *excellent* piece by @math_rachel talking about the overlap of machine learning & medicine, & where it goes wrong, capturing such a wide range of issues.
This is required reading for ML folks, #MedTwitter, #LongCOVID, #NEISvoid, & everyone.
bostonreview.net/science-natureā¦
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This is required reading for ML folks, #MedTwitter, #LongCOVID, #NEISvoid, & everyone.
bostonreview.net/science-natureā¦
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It looks at flaws/biases in medical data (pulse oximeters are less accurate on POC, diagnoses of #EDS take 4 years for men but 16 YEARS for women), ML amplifies biases rather than counteracting them, algorithms that incorrectly cut health care with no method for recourse...
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...ways that this has affected #LongCOVID patients (I'd add that the focus on hospitalized patients only, or respiratory symptoms only, will be a huge problem if anyone uses ML for #LongCOVID at this stage).
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Folks concerned about my advocacy for structural, neurological diagnoses, for #MCAS and connective tissue disorders, or for "#MEspine"āāI 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/awarenessāāagain, 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).
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.
Mikaās story in their own words:
supportmika.noblogs.org/deutsch-mikas-ā¦
#supportmika #CCI #MECFS #EDS #notgivingup #solidarity
supportmika.noblogs.org/deutsch-mikas-ā¦
#supportmika #CCI #MECFS #EDS #notgivingup #solidarity
In 2015, I started slowing down. I was learning ecological construction methods while staying at self organised community projects in Scandinavia, messing about on roofs, rampaging around forests, having a whale of a time.
That winter, it began to get harder to get up in the mornings. I was less able to participate in collective life.
Early 2016, I knew something's wrong. Iād left Scandinavia and come home to East Germany where I lived with my girlfriend, and continued to feel unwell.
Early 2016, I knew something's wrong. Iād left Scandinavia and come home to East Germany where I lived with my girlfriend, and continued to feel unwell.
If I could wave a magic wand:
āĀ we would prove that intracranial hypertension (as measured by ICP bolt) is common in our pt populations, more often than not w/ normal LP opening pressures, w/o papilledema
āĀ we would prove that occult tethered cord is common and runs in families
āĀ we would prove that intracranial hypertension (as measured by ICP bolt) is common in our pt populations, more often than not w/ normal LP opening pressures, w/o papilledema
āĀ we would prove that occult tethered cord is common and runs in families
āĀ we would learn whether we should untethether these kids as kids, if that might help them avoid the hell to come
ā we would prove that you can get recurrent leaks that imaging will never catch
ā we would prove that you can get recurrent leaks that imaging will never catch
