#mespine — Public Fediverse posts

For the first time (I know of) I had an ECG done during an intracranial hypertension flare, and it had prolonged QTs

Cardiologist said CSF leaks/decreased fluid from IH may be why and need more electrolytes (levels in range but on low side) to compensate for it #MESpine

^ the author is my tethered cord surgeon btw, if you’re looking for an expert I highly recommend Petra Klinge at Rhode Island Hospital

#TetheredCord #EDS #MECFS #MEspine #LongCovid #POTS #MCAS

I submitted my comments to [email protected] on why Nassau County, NY should NOT pass their proposed anti-mask law to fine/arrest people wearing masks — the meeting is TODAY, get your comments in! #EDS #MECFS #MEspine #NEISvoid #LongCovid #DisabilityMastadon #DisabledSocial

🚨The EDS Chiari Center in Nassau County serves EDS + MECFS patients but also people with connective tissue brain/spine damage including from Long Covid, anyone could need this care! And travel far to get it

Transcript finally up for NIH #MECFS Research Roadmap: Lesser Studied Pathologies Webinar
https://event.roseliassociates.com/me-cfs-research-roadmap/wp-content/uploads/sites/71/2024/04/Transcript_MECFS-Research-Roadmap_Webinar-7_Less-Studied-Path_Open-Session_final.pdf

Speakers included
V Whittemore/B Pollack/I Ruhoy/P Klinge/A Maitland/J Rehmeyer/L Pace/B Pollack/N Thomas/E von Saltza/R Boneva/E Unger

#CFS #PwME #CCI #EDS #MCAS #MEspine #hEDS @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

Recording of NIH #MECFS Research Roadmap: Lesser Studied Pathologies Webinar is now available
https://www.youtube.com/watch?v=YJ4m1lt7FyE

Speakers included
Vicky Whittemore; Beth Pollack; Ilene Ruhoy; Petra Klinge; Anne Maitland; Julie Rehmeyer; Laura Pace; Beth Pollack; Natalie Thomas; Emelia von Saltza; Roumiana Boneva; Elizabeth Unger

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #CCI #EDS #MCAS #MEspine #hEDS

Fulltext now available

Case report: Recurrent cervical spinal stenosis masquerading as #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome with orthostatic intolerance

https://www.frontiersin.org/articles/10.3389/fneur.2023.1284062/full

#MEcfs #CFS #PwME #MEspine @mecfs

People can also donate here:
Venmo: Emily_rj
CashApp: $ERoseJ
PayPal: emilyrjohnson

I’ll add any cashapps donations to my GFM fall neurosurgeries goal, ty 💜 https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

#MutualAidRequest #MillionsMissing #EDS #pwME #LongCovid #MedStadon #MESpine #POTS #MCAS #Mito

Recently @ashhultman, me and others wrote to @NIH to request research funding covers the brutal intersection of #MECFS, #EDS and spinal issues

Many doctors don’t know how severely these conditions escalate — millions of us are left untreated, then end up severely more disabled and needing more serious and complex surgeries #MEspine #pwME #POTS #MillionsMissing #LongCovid #MCAS https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

Neglected tethered cord syndrome #TCS caused a lumbar herniation, scoliosis, multiple herniated cervical discs, stenosis, bone spurs, degenerative disc disease, nerve damage, craniocervical instability #CCI

I may have to get neck neurosurgery too so please give what you can! #EDS #MESpine #pwME #MECFS #LongCovid #MillionsMissing #MCAS #POTS https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

I need a tethered cord release with lumbar disecotomy — doctors in Nebraska, Georgia, Iowa didn’t help (or even look) so I must see the $$ #EDS tethered cord expert and her colleague in Rhode Island

#TCS has been disabling me since birth #MedTwitter #pwME #MCAS #MECFS #POTS #Mito #LongCovid #MEspine https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

I have an infection so no energy to do many tweets like I have raising funds for others

$22K only covers neurosurgery care now — I may need more neurosurgery next year

Pls share if you can’t donate! #LongCovid #DisabledSocial #MedStadon #EDS #pwME #POTS #MCAS #LongCovid #MESpine https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer