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
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
@RemissionBiome is hosting ME/CFS &MESpine expert Peter Rowe, MD, who will be presenting to the
community on Feb 9 & 16!
What’s new in ME/CFS, OI/POTS, CCI, MCAS, and more
Sign up now! https://us06web.zoom.us/meeting/register/tZAodu6tqD4oHNeHFyC9BSF4o1mkxiCR76V_
Welcome! You are invited to join a webinar: Peter Rowe Renegade Research/RemissionBiome talks. After registering, you will receive a confirmation email about joining the webinar.
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
#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
IntroductionMyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic, multi-system disorder that is characterized by a substantial impairment in the activities that were well tolerated before the illness. In an earlier report, we had described three adult women who met criteria for ME/CFS and orthostatic intolerance, and had congenital or acquired cervical spinal stenosis. All three experienced substantial global improvements in their ME/CFS and orthostatic intolerance symptoms after recognition and surgical treatment of the cervical stenosis. After a several year period of improvement, one of the individuals in that series experienced a return of ME/CFS and orthostatic intolerance symptoms.Main symptoms and clinical findingsRadiologic investigation confirmed a recurrence of the ventral compression of the spinal cord due to a shift of the disc replacement implant at the involved cervical spinal level.Therapeutic interventionDecompression of the spinal cord with removal of the implant and fusion at the original C5-C6 level was once again followed by a similar degree of improvement in function as had been observed after the first operation.ConclusionThis recapitulation of the outcomes after surgical management of cervical stenosis provides further evidence in support of the hypothesis that cervical spinal stenosis can exacerbate pre-existing or cause new orthostatic intolerance and ME/CFS. Especially for those with refractory symptoms and neurologica...
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
Emily Johnson
Tom Kindlon
NoVA MECFS/POTS/... Support Gr