tomtomJul 3, 2023

疾患啓発、患者支援、研究推進がすすみますように。
Hoping for advancement in disease awareness, patient support, and research promotion.

#自己免疫性自律節障害 #AAG #自律神経障害#Dysautonomia #筋痛性脳脊髄炎 #慢性疲労症候群　#MECFS #起立不耐症 #OrthostaticIntolerance #体位性頻脈症候群 #POTS #シェーグレン症候群 #SjS #脳脊髄液減少症 #CSFleak #線維筋痛症 #FM #コロナ後遺症 #LongCOVID

▼MECFS info（個人）
https://mecfsinfo.net/

▼POTS and Dysautonomia Japan（団体）
https://potsanddysautonomiajapan.org/

ME/CFS info｜筋痛性脳脊髄炎 / 慢性疲労症候群 情報サイト

筋痛性脳脊髄炎 / 慢性疲労症候群（ME/CFS）のよりよい理解を目指して有益な情報を提供するためのサイトです。

ME/CFS-info
Show threadLily Rose HealthMar 22, 2023

What I had *asked* #Neurology to do in fact, was to look again at my scans to double check for #Chiari malformation/ #TetheredCord and/ or #CSFleak - all of which are plausible given my enormous range of symptoms.

Computer said no. My scans were not available to look at.

#MEcfs #NeuroME

JudyintheskynetFeb 7, 2023
@annakern_np I have to specify that I didn't get floaters with my ME, but with the combination of ME and a #CSFleak !
JudyintheskynetDec 26, 2022

Das Gesundheits-Magazin Ourbodies hat meine Geschichte erzählt, wie es so plötzlich zu meiner schweren Behinderung kam und es mir damit geht, mit Schwerpunkt auch auf Aufklärung zu #CFSleak nach Lumbalpunktion, #MECFS, aber auch ganz allgemein. Und mein coping (wenn es denn das überhaupt gibt bei ME) mit der Kunst und unser Projekt, mit dem wir mehr awareness schaffen wollen.

https://ourbodies.at/suechtig-nach-leben-in-einem-paralleluniversum/

#nichtgenesen #mecfs #spinalleak #csfleak #disabilityawareness #Lumbalpunktion

„Süchtig nach Leben in einem Paralleluniversum“ • OUR BODIES

Judith Schoßböck hat ME/CFS, das Liquorverlustsyndrom und weitere schwere Krankheiten. Mit ihrer Kunst klärt sie auf.

OUR BODIES
Bendy~HEDS & Co 🥄👩🏻‍🦼😷Dec 21, 2022
#Introduction 👋Basically what's in my in my name/bio covers most of it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD​
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISvoid & a #LongCovid supporter
Backup to twitter @luvenice_h when gets impossible for us to use. Sad it has been ruined aft using as a tool for 10+yrs post hEDS dx.
Helps me to help others.
Bendy~HEDS & Co 🥄👩🏻‍🦼😷Dec 20, 2022
I've signed the @NeuroAlliance petition, calling for UK governments to urgently establish a Neuro Taskforce. Add your name too! #BackThe1in6 #Dysautonomia #POTS #pwME #MEcfs #CSFleak #Stenosis etc
https://campaigns.mssociety.org.uk/page/106592/petition/1
Back the 1 in 6 - we need change for neurology services

I've just signed the Neurological Alliance's petition to the UK governments, calling on them to work together to establish a Neuro Taskforce to create real change - add your name too! #BackThe1in6

Show threadBendy~HEDS & Co 🥄👩🏻‍🦼😷Dec 19, 2022
@bennessb
👋What's in my name/bio covers it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISVoid & a #LongCovid supporter
Backup to twitter @luvenice_h if/when gets impossible for us to use.
Sad Twitter has been ruined aft using as a tool for 10yrs post hEDS dx. Helps me to help others especially the undx
Kathleen Burnard Dec 3, 2022
Hi! I’ve never done something like this before, but it’s #IDPwD so why not? My name is Kathleen, and I’m disabled. I’ve got #hEDS (that acts suspiciously like vEDS), #POTS, #MCAS, #SevereAsthma, #CSFLeak, essential tremor, occipital neuralgia…the list goes on and on. You can read about my recent neuro/vision struggles in the Nerve Block Saga link in my profile. This is an Amazon wishlist (also in my profile), mostly for #disability related products, if you’re so inclined: https://www.amazon.com/hz/wishlist/ls/19RHSTWOMQDQ0?ref_=wl_share
Check out my list on Amazon

Jodi EttenbergNov 22, 2022

Hello! So excited to be here that I forgot to do an #introduction. I'm a former lawyer who fell into a new career as a food & travel #writer. For 10 years, I traveled the world, & wrote (& ate!), with bylines at NatGeo, CNN, The Guardian, BBC, & more, until a lumbar puncture left me with a chronic #CSFleak in 2017, & #disabled.

I now write about curiosity, health, & loss. For more about my story please see my site, Legal Nomads, or this piece: https://edition.cnn.com/travel/article/jodi-ettenberg-legal-nomads-csf-leaks-wellness-cmd/index.html

A spinal fluid leak derailed my life of travel and food, but taught me to find beauty in the small things

After quitting her job as a lawyer, Jodi Ettenberg spent years developing a successful career centered around food and travel. A decade later, it all ended with a medical procedure gone wrong. Here, she explains how she processed her anguish and loss.

CNN
Lily Rose HealthNov 2, 2022
I saw a suggestion earlier that #LongCovid and, by extension, #MEcfs can damage connective tissue. Anybody know if there is research confirming this?
#EDS #Chiari #RCCX #CSFleak