In summary, zero NHS care = fundraising for surgery abroad (we had to raise £100k) + then no aftercare/rehab in the UK, even after major lifesaving neurosurgery.
It seems insane but this is true.
#EDS #CCI
Thank you @joshnewburymp.bsky.social for leading this debate on the lack of an NHS care pathway for Ehlers Danlos Syndrome patients with Craniocervical Instability.
Everything he describes, Olivia has been through and is still going through.
#EDS #CCI @achronicvoice.com @ehlersdanlos.bsky.social
Poke #INRAE #FNSEA #AgroParisTech #AgroParis
#MEDEF #CCI #CoordinationRurale #FDSEA #ConfédérationPaysanne #MinistèreAgriculture #UE #UnionEuropéenne #ParlementEuropéen
#ConseilDeLEurope
@vonderleyen.ec.europa.eu
.....
I noticed about a week or two ago I’ve been losing strength in my right arm over time.
It seems to have gotten worse this week bc I’m having a hard time typing and holding my phone now.
#mecfs #longcovid #cci
If you’re UK-based and have the spoons, please ask your MP to attend the debate on Ehlers-Danlos syndromes and craniocervical instability (CCI)
Easy fill in the blank template, as well as MP postcode search + send here:
edsuk.eaction.org.uk/makeitmatter
#EDS #EhlersDanlos #CCI #MEcfs #SevereME
I survived the severe side effects of Fluoroquinolones until now (never knowing when my aorta will give up) just because of one doctor who knows about #FQAD 🙏. Side effects of Fluoroquinolones are further FQ induced complex chronic illnesses such as #FQAD, #MECFS, #MCAS, #SFN, #CCI, as well.
I Tried to Vacuum and My Head Drifted Off My Neck Too Much: The #AAO Story
When You Can’t Roll Your Shoulders Back and Shrug Your Neck and Head into Proper Alignment Anymore: The #CCI Story
Craniosacral Therapy Gone Awry: The #AAI Story
An #EDS horror trilogy
Getting so sick that I had to delay an important spinal procedure until at least late June was not on my 2026 bingo card but it sure tracks with the general vibe of this year. #hEDS #CCI
Cabinet okays MSP funding of Rs 1,718.56 crore to CCI to empower cotton farmers #Cabinet #MSP #Rs #CCI #socialnewsxyz
Hello👋,
ich bräuchte bitte mal Hilfe:
Kennt ihr eine Orthopädie mit Kasssensitz in Köln oder Umgebung, die sich mit CCI/AAI/instabiler HWS befasst?
Der Beitrag darf gerne geteilt werden, da ich selbst kaum Reichweite habe.
Danke!🙏
#CCI #MECFS #KOELN #KÖLN
La CCI de Maine-et-Loire proposera de nouvelles formations à partir du mois de septembre
www.angers.villactu.fr/la-cci-de-ma...
#Angers #cci #formations
Cranio-cervicale Instabilität ( #CCI ) bei #hEDS bzw. Hypermobilität ist ein gelinde gesagt nicht unkomplexes Thema, gerade auch in der klinischen Evaluation.
Dass es Bemühungen wie diese gibt, hier Standards zu etablieren, ist höchst erfreulich.
link.springer.com/article/10.1...
New clinical research from the Chiari EDS Center of Mount Sinai South Nassau - outlining a protocol for standardizing the assessment of craniocervical instability (CCI) downstream of connective tissue dysfunction/hypermobile Ehlers-Danlos #EDS #hEDS #CTD #CCI t.co/PM9am03rHt
Infographic about Cerebral Outflow Disorder, related to Ehlers-Danlos Syndromes (EDS). At the top left is a circular EDS Awareness logo. The text reads: “Cerebral Outflow Disorder: Signs can include: Pulsatile Tinnitus Pressure Headaches IIH Brain Fog Vision Problems” There is an image of a person’s head in profile with a glowing neural network over the brain, and graphic icons of upward and downward arrows suggesting blood flow. The bottom text on a teal background reads: “What it is and Why EDS Patients Should Know About it chronicpainpartners.com”
Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it
www.chronicpainpartners.com/cerebral-ven...
#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IIH #CSFLeak #Chiari #AAI #CCI #Headache #Spoonies #Zebras #MedEd #MedSky #Doctors #neurology
Sophie’s life has been turned upside down by two rare spinal conditions. She’s in constant pain and can’t even get out of bed. The surgery she needs is urgent but costly. Please share her story and consider helping. #CCI #AAI #EhlersDanlos gofund.me/9ae513de3
Now I remember why the last mammogram messed me up so much — the neck movements! I’m hoping this time will be better bc now we know about manual traction — did it as soon as I got home and reset my alignment #CCI 🤞
À Angers, Cholet et Saumur, les centres de formation de la CCI présentent leurs filières en alternance
www.angers.villactu.fr/a-angers-cho...
#Angers #cci #maineetloire #alternance #formation
A promotional graphic for EDS (Ehlers-Danlos Syndromes) awareness about head and neck research. The design has a teal background with white text and several images: an X-ray of a neck with orange measurement lines and arrows, a medical spine model being pointed at with a pen, and an illustration of a woman shrugging with palms up. Yellow question-mark icons appear on the left and right. Text shown: EDS Awareness Ehlers-Danlos Syndromes Measuring the unmeasured... What two new studies say about the head, neck and hEDS Some results may be unexpected.... www.chronicpainpartners.com
Measuring the Unmeasured - What Two New Studies Say About the Head, Neck, and hEDS
buff.ly/niK7jRw
#EDS #hEDS #Zebras #CCI #Medicine #MedSky
Das heißt, auch wenn #MECFS durch #Fluorchinolone oder #CCI ausgelöst wurde? Das wäre ja toll und würde auch vielen anderen wieder eine Perspektive bieten. #LeaveNoOneBehind
Stupid #CCI.
Stuff was stuck. Lifted my head. Dislodged the stuff, which then went down the wrong pipe so I choked 🤪
#LongCovid
8/ 2026 is a year of reckoning. A 10% EBITDA margin is a valid goal, but achieving it through aggressive extraction risks merchant churn and regulatory intervention. Restraint may be the only way to avoid a structural ceiling. #Zomato #Swiggy #FoodDelivery #TakeRates #StartupIndia #NRAI #CCI
Felt like my food and pills were stuck in my throat. Had spouse do manual traction on my cervical spine (literally lifts my skull from its base and holds it up for a few seconds, two or three times til it feels right). Food no longer stuck. #CCI is a trip.
Will comply with CCI directions on data sharing, WhatsApp tells SC #CCI #WhatsApp #SC #socialnewsxyz
Unterwegs in Wiesbaden
Selfie mit Hut
4.200 Schritte
Es tut mir so gut, draußen unterwegs zu sein. Aber es kostet meinen Körper so viel Kraft. Es ist, als bräuchte ich unglaublich viel Kraft, mich aufrecht zu halten. Die Muskeln müssen so irre viel arbeiten. Was für Dreckskrankheiten sind das bloß, verdammte Hacke!
#MEcfs #POTS #CCI #MCAS
B&C's TSCAblog : The Coalition for Chemical Innovations Offers Four Principles to Guide Congress’s Efforts to Modernize TSCA
www.lawbc.com/the-coalitio...
#CCI, #newchemicals, #TSCA
One hand holding another hand in a supportive way To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice! My daughter has been diagnosed with a range of chronic conditions, including Hyper-mobile Ehlers-Danlos Syndrome and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I have approached my role as caregiver in the same way I approach my day job leading social science research: reading the literature, carefully observing her condition, and developing hypotheses about her conditions and how they might be treated. I now have more than 7 years of longitudinal observation—a wealth of data—but no easy way to share with the medical research community the hypotheses these observations have engendered and my ideas about how to productively structure future research to accelerate progress toward treatments for her and others like her. Read more here>>
To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice! by @jefflubellc19.bsky.social
Screenshot from February 2026 AMMES newsletter
www.annfammed.org/content/23/6...
#chronicillness #Spoonie #MEcfs #CFS #POTS #LongCovid #hEDS #CCI
Fun is a pile of spent brass! Every single one represents a memory of the time that we spent together on the range. We love SAFETY and it shows!!
.
#kidssafefoundation #gunsafety #rangeday #cci
CCI orders probe against IndiGo over mass flight cancellations in Dec #CCI #IndiGo #Dec #socialnewsxyz
in all that tho - I got up off the floor. By myself. 😱 (it’s actually easier from a lying down position than a sitting position). I get on the floor as a last resort bc getting up is problematic.
Anyway. A tidbit from my #LongCovid #MECFS #POTS #CCI life!
