Discover and read the best of Twitter Threads about #EDS

Most recents (24)

It’s public comment time. #cdcowgChat
@Amy_L_Partridge just killed it! Go Amy go Amy Gooooo!
Now up #GaryFranklin. Hater of pain patients. Feeling’s mutual. #cdcowgChat
Read 29 tweets
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 ”neural strain“ (such as tethered cord syndrome and CCI) can cause hypoxia due reduced perfusion (blood flow) to the affect area. When it’s your entire spinal cord + brainstem that’s…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.)
Read 5 tweets
I have tried to assemble the evidence base to support conducing an RCT of high-dose thiamine for people with #MECFS, #Fibromyalgia and #EDS. I would appreciate feedback on whether the case has been made, and if not, what additional evidence would help.
I document existing RCT evidence (for IBD fatigue) and hypotheses for why it could work for people with ME/CFS, Fibromyalgia and EDS here:… . More technical discussions here:… and here:…
Most recently, I summarize results of survey of retrospective use of high-dose thiamine among 55 people w/ #MECFS, #Fibromyalgia and #EDS here:… . Key graph below:
Read 14 tweets
And we want funding for innovative research on things that may trigger, impact or cause #hEDS like 1)nutrient metabolism/transport and nutrients, copper, heavy metals in tissues 2) fibroblasts and altered tension in the collagen matrix 3) infections in tissues(!) a la @polybioRF
Some previous threads 👇on #EDS #EhlersDanlosSyndrome research. We need more innovative research like this funded bc hEDS, HSD, and connective tissue illnesses are not rare. The majority of #pwME meet diagnostic criteria for hypermobility (one study says 80%, one study says 50%)
Thread on new research on hEDS, suggesting it can be triggered regardless of genetics:
Read 21 tweets
Body Politic has published an important open letter to the @NIH @NIHDirector urging the prioritization of #LongCOVID research that builds off prior research into #MECFS and related conditions.

👉… by @itsbodypolitic @fi_lowenstein @ItsAngInLA The organization Body Politic has written an Open Letter to
In December, Congress provided $1.15 billion over 4 years for @NIH to “support research into the prolonged health consequences of #COVID19”. With many newcomers to the field there’s cause for concern that experienced #MECFS researchers may be overlooked.… “We are writing today to urge the NIH to prioritize fundin
#LongCovid and #MECFS have much in common and are increasingly joining forces to drive change that might lead to diagnostics, treatments, and a cure. “Long COVID patients share both symptoms and experiences w
Read 10 tweets
One issue that I have with the current approach to vaccinating chronically ill and disabled folks is the simplistic understanding of both specific conditions and possible COVID-related impacts. 🧵
Some of us may not necessarily be more likely to die but may be much more likely to experience serious, longterm disability-compounding complications.

As usual, #EDS provides a great example of why the current approach is flawed.
Doctors hear EDS and think "just joints". Those of us with EDS know we also experience dysautonomia, mast cell dysfunction, immune irregularities, cardiovascular issues, and CFS/ME/longstanding fatigue -- among other things.
Read 14 tweets
This! I was denied mobility aids well into my progression because of claims that I was “too young” to start “deconditioning.” PT and building muscle doesn’t replace my need for aids. They are worth fighting for. #DisabilityHasNoAgeRequirement #EDS #CerebralPalsy
2nd hand mobility aids is the best most can do when faced w doctors and insurance companies that don’t understand #EDS. As much as I’d like a wheelchair that truly fits, having any chair has saved my quality of life. New rollators with seats are about $80 self pay online at Drive
For me it is especially important to rely on mobility aids until I collect the right braces my #EDS joints need. Otherwise I push them out of socket for ADLs w lasting consequences. Because of aids and braces, I’m MORE able to do PT/exercise. It’s the opposite of deconditioning.
Read 3 tweets
A short thread on why it annoys me that some doctors and physios don't let ppl with #EDS use braces or supports because of "deconditioning" and "increased muscle weakness":
1. You can't strengthen a muscle in spasm, and stabilizing the joint -- sometimes even just for a few hours -- can be all that it takes for the muscle to let go enough to actually function properly.
2. Sometimes the joint is just too fucking loose and no amount of strengthening can compensate for the gummy worms holding it together.
Read 3 tweets
I recommended this before, and use it still. My patients who just started the program report pieces of plaque drop off their teeth. My own results: Shiny teeth, with roots exposed by receding gums for > 45 years protected by a clear mineral coat…
If you do this, follow instructions to the letter using only products recommended; do not deviate. For those of us with Ehlers Danlos Syndrome #EDS who are prone to receding gums and all other manner of dental woes, take note! @TheEDSociety BTW my EDS patients love it!
Also seen in my photo, stippling (orange-peel appearance) of gums, when present, indicates gum health, without periodontal disease. My gums are healthier than ever! (Absence of stippling is not necessarily a sign of disease; if you have concerns check with your dentist)
Read 3 tweets
The Norris lab is hosting a hypermobile Ehlers Danlos Syndrome (hEDS) summer research internship program on the campus of the Medical University of South Carolina (MUSC).Those who are interested should look at the attached photos for eligibility requirements and description (1/3)
To apply, fill out an on-line application via:…

We hope those who are eligible consider applying. We need more research on hEDS and hope you will join us in our plight to discover causes of hEDS!

Eligibility and info can be found here or through the application link (3/3) ImageImage
Read 7 tweets
We should take some of the most replicated findings in #MECFS and study them in #longCOVID patients. Some of these findings, if also present in #longCOVID, *could* potentially imply avenues for symptom management or therapeutic treatment.
Here are a few that might be interesting:
1️⃣Low serum carnitine:
2️⃣ Low natural killer cell function:…
3️⃣ Elevated lactate (blood, brain):…
4️⃣ Cerebral hypoperfusion:…
Read 25 tweets
I googled “pelvic instability.” That’s all. I clicked on this article(pictured) which I thought sounded mechanically interesting. He mentioned this ‘Badgley Book Test” to examine SI joint instability. I googled that. And I found this tweet... mentioning EDS 😮👉〰️👈 Image
When EDS comes to me when I’m not looking for it, I feel like I’m a detective, on the right path. This browser doesn’t remember what I’ve searched for in the past so, if EDS turns up, it found me.
I’ve been having trouble for a decade with my toe joint. Now that I’m really investigating it... I’ve been led to wonder if an ankle issue led to foot and then to back & leg issues, or if it came from the top down, beginning with an unstable SI joint. 🧐
Read 9 tweets
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.…
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...

...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).

Read 9 tweets
A lot of #EDS patients talk about developing high pain tolerance because of our frequent dislocations. I want to take a second to talk about the assumptions embedded in that phrase because it so often minimizes what were coping with. 1/8
I have severe allergies to most meds, I have no stable pain meds, I have bone pain from #MCAs, and I dislocate daily. I'm in a lot of pain all the time. And claiming I have "high tolerance" is a disservice to what I'm actually coping with. 2/8
I've learned not to cry, not to throw a fit, to keep working through the pain, because I've been told I need to my entire life. I grew up with Drs gaslighting my pain. I became a teen with doctors gaslighting my pain. I entered my 20s in the same way. 3/8
Read 8 tweets
My arms: 💪

Also my arms: 🪱

#EDS My flexed, tattooed arm showing off my musclesMy extended, tattooed arm demonstrating elbow hypermobility
*THIS* is what disability looks like. Just because I can destroy my enemies in arm wrestling doesn't mean my arms aren't gummy worms. Just because my arms are gummy worms doesn't mean I can't destroy my enemies in arm wrestling. 🤷‍♂️
Lol I love that a doctor or physio would look at this and be like, "hm... more strengthening would probably fix things." Fuck off.
Read 3 tweets
Folks concerned about my advocacy for structural, neurological diagnoses, for #MCAS and connective tissue disorders, or for "#MEspine"––I 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/awareness––again, 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). Image
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.
Read 37 tweets
This year International Day of Persons with Disabilities is highlighting that not all disabilities are visible. Disabilities are diverse and they can be dynamic. I have #EDS and I never know what my day is going to be like 1/
Sometimes I can go for a hike, other times I'm using mobility aids. I have to do a morning check to see how I'm feeling before I leave and that is just something I do. 2/
Although I have a genetic disorder that has affected me since I was a child, I used to be a ballet dancer. In fact, I used to dance 30 hours/week. Many people from my past would probably never have thought that I was disabled. I didn't think I was! 3/
Read 6 tweets
I am so angry. So much of Jenny’s case should / could have been caught when she was a child or teen, before she ”got sick.” It would not be hard to get this right. We do not need some miraculous feat of science to put into practice what we already know to be true.
Any ME org that is not joining forces with other organizations to educate the ME community on #EDS and #MCAS, that is not talking about comorbidities, is failing patients. I count @MEActNet in that boat. We have got to do better.
Jenny was diagnosed with ME when she fell ill at university, but she was born with #vEDS, which has a genetic marker. She had obvious phenotypical signs, but they were all missed.
Read 4 tweets
Just så.
Så vad du ser på min utsida säger ingenting om hur jag faktiskt mår.

#EDS #kronisksmärta #EhlersDanlos #fatigue #hjärntrött
Tänk dig att du krockar, lägg sedan på influensa, träningsvärk i alla muskler i kroppen, stukade hand- och fotleder, tandvärk, magont och en utmattning som ofta gör dig inkapabel att ta in information och ofta tvingar dig till vila vare sig du vill eller inte.
Ungefär så kanske.
Prova det vettja.
Sluta gnäll när jag och andra ibland gör saker vi mår bra av (stickar, bakar, målar, syr eller vad som helst) trots smärtan.
Vi måste för att stå ut och du har fanimej ingen aning om vad vi krigar mot i våra kroppar, VARJE MINUT AV VARJE DYGN, ÅR EFTER ÅR.
Read 6 tweets
#DysConf2020 Neurogastroenterologist @LauraAPace talking about the multidisciplinary #EDS clinic she helped to set up -- time to dx for the geog area was v long, time to being seen by a clinical geneticist for referred pts was THREE to FIVE YEARS.
Wanted to track comorbid disease burden/syndrome burden. Clinical phenotype was often more severe than the diagnostic label suggested (for hEDS, etc). Need a more comprehensive dx for these patients.
The clinic ultimately didn't work bc, when the clinicians from the specialist EDS clinic recommended patients be followed up with formal screening for potential autonomic dysfunction,& passed on the testing/mgt outline to their primary care physicians...
Read 12 tweets
Dr Tae Chung on the limitations of non-pharmacological management strategies for #POTS: increasing sodium+water intake > risk of elevating BP too far esp in older pts.#DysConf2020
Prob less important for younger pts (20s,30s) but worth keeping an eye on & encourages pts to self-monitor HR & BP regularly.

Also if it makes you per a lot, esp at night, can really mess w sleep, cause/contribute to insomnia #DysConf2020
Dr Tae Chung notes that increased functional capacity through salt+fluids is a VERY IMPORTANT medical need & that increased capacity needs to be balanced against the potential risks (which are not well understood esp in this often-younger population w #POTS). #DysConf2020
Read 8 tweets
Tomorrow's to-do list so far:

1) morning ablutions, etc
2) Stanford Neurodiversity Summit
3) diarise stuff
4) start putting meds into @NPSMedicineWise app
5) email dietitan to confirm appt time, check on what details to prepare ahead of appt.
6) reply to emails from endo & send her drug & PyoG info/pics
7) tidy up files, apps on phone, backup
8) start transferring over to new phone
9) physical phone stuff: case, screen protector, etc
10) figure out where to order from/order book for S's Dad's birthday.
11) email upper airway ENT prx re next Tues appt; they were supposed to have sent a confirmation, info on where to find them, permission to travel to appt, etc, but yet to receive.

12) work out new glucometer (Read the darn instructions first! Text @louiseallana if stuck).
Read 12 tweets
As I was musing to @BattenbrgBarbie recently, I suspect there are a bunch of overlaps in the social experience — along with some v important differences, esp around differential inflections along axes of power/oppression — in various experiences of being #NonNormativelyEmbodied:
e.g. (in no particular order & v incompletely): Fat, #ActuallyAutistic+prone to #SensoryOverload, Deaf, in/visibly #disabled, in #ChronicPain or experiencing #chronicillness-rel’d #fatigue, racialised, trans, v tall or vshort (even without being a little person), #hypermobile...
I was thinking about how many of the #hypermobility/#EDS-related specificities of providing competent & safe care to me (even when the EDS isn’t DIRECTLY contributing to the current clinical picture)...
Read 8 tweets
Dear #NEISvoid/twitter, I am VINDICATED (&, uh, still hyper on steroids, FWIW). Awesome Sleep/RespDoc is of the educated &firm opinion (upon reviewing my hospital discharge summary, lung function test results...which the hospital still hadn’t passed on yet as of this morning? 🙄)
...that I have NOT suddenly & completely coincidentally managed to develop asthma for the first time in my life at the tender age of 39 (although he thinks it does sound like a bronchospasm cough, which is literally how I was describing it when it first started happening.
Nor do I seem to have any kind of lung problem, nor a recent past upper/lower resp tract infection). Although apparently he hadn’t received the results of either of the sputum culture tests from the hosp. I’m assuming they were boringly negative or I’d have heard by now, though.)
Read 37 tweets

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