How it went
Did it last?
- 2 of 17 said the benefit wore off.
- 2 of 17 needed to keep doing it to stay well.
Read from what people wrote. A story that ends without a follow-up counts as lasting, so treat these as minimums.
| Outcome described | Accounts | Share |
|---|---|---|
| Full recovery | 7 | 41% |
| Near-full | 2 | 12% |
| Substantial | 5 | 29% |
| Partial | 3 | 18% |
| Relapsed | 0 | 0% |
| No benefit | 0 | 0% |
By how ill people were
| Severity at worst | How it went | n | Recovered |
|---|---|---|---|
| Severe | 6 | 67% | |
| Very severe | 9 | 56% |
2 accounts don’t say how ill the person was.
Who published these accounts
Right-hand number: share describing a full or near-full recovery. Pages that sell something, and advocacy sites, tend to publish only the successes.
How often it comes up
Posts that mention Craniocervical fusion / tethered cord, per 1,000 posts each year. Hover a point for the count.
Show as a table
| Year | Posts mentioning it | All posts | Per 1,000 |
|---|---|---|---|
| 2009 | 0 | 184 | 0.0 |
| 2010 | 0 | 682 | 0.0 |
| 2011 | 0 | 704 | 0.0 |
| 2012 | 0 | 1,491 | 0.0 |
| 2013 | 0 | 1,708 | 0.0 |
| 2014 | 0 | 2,352 | 0.0 |
| 2015 | 0 | 2,158 | 0.0 |
| 2016 | 0 | 1,431 | 0.0 |
| 2017 | 0 | 3,110 | 0.0 |
| 2018 | 7 | 2,201 | 3.2 |
| 2019 | 4 | 1,075 | 3.7 |
| 2020 | 8 | 2,581 | 3.1 |
| 2021 | 7 | 1,867 | 3.7 |
| 2022 | 2 | 1,166 | 1.7 |
| 2023 | 1 | 1,000 | 1.0 |
| 2024 | 0 | 1,237 | 0.0 |
| 2025 | 2 | 1,019 | 2.0 |
| 2026 (so far) | 0 | 840 | 0.0 |
Posts in the forum threads we archived, 26,806 in all, counted per year. A mention means the post names the treatment, not that the writer took it. These threads all contain a recovery story, so they show what those communities discussed, not everyone with ME/CFS or long COVID. All trends
All 17 accounts
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This surgery fuses people's skulls to their spines to treat ME-overlapping condition
Jen Brea underwent craniocervical fusion performed by Dr. Paolo Bolognese, using two 2.5-centimeter titanium bars and six screws to fuse her top two vertebrae to her skull and lift her head by 4 millimeters, followed about two weeks later by tethered cord…
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The Mechanical Basis of ME
Jeff Wood became severely bedridden with post-viral ME around 2015 and, after two years developing his "Mechanical Paradigm" theory that connective-tissue problems underlie some ME cases, reported achieving full remission. The 2022 article confirms his…
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Mallory's Dangerous Spinal Treatments Eventually Work
Mallory had ME/CFS with several comorbid conditions and was mostly bedbound for around nine years. He pursued two experimental spine treatments: GHK-Cu peptide injections to stabilise his spine, and frequency specific microcurrent for a tethered cord, which…
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ME/CFS in remission from Mold Avoidance
Despite comorbid craniocervical instability, mold avoidance "still helped" and affected symptoms like sound sensitivity and POTS, which he calls "the most impressive [treatment] I've done YET." He says he never achieved full remission from mold avoidance…
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Craniocervical Instability, Neurosurgery and M.E.: Just the Facts, Please - An Editorial by Jeff Wood
After years bedridden with severe ME and a craniocervical instability diagnosis confirmed with objective structural testing, Jeff Wood had skull-to-C2 fusion surgery in January 2018, followed by a second neurosurgery to release a tethered spinal cord. He…
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List of ME/CFS Recovery and Improvement Stories
jeff_w is listed reaching remission from severe ME/CFS following craniocervical instability fusion surgery, per the compiled list.
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Health Update #4: Recovery is a %*#*&$@!
Jennifer Brea had been managing severe ME for about 8 years with Valcyte, Valtrex, Mestinon, and fludrocortisone plus mold avoidance, which had only brought her from severe to moderate; in November 2018 she underwent three surgeries over six weeks — a…
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Twitter status re: Karen
Index entry (relayed by JenB) credits Karen with CCI fusion surgery for ME/CFS improvement. Twitter/X content could not be fetched, so no further detail on duration of illness, severity, or durability beyond the index claim is available.
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Jennifer Brea's Recovering Story: the Spinal Series Pt II (Mattie)
The same post describes Mattie, a web developer in the Netherlands whose ME/CFS began in 2010 with a gradual decline to being mostly bedridden. Three months after craniocervical and atlantoaxial fusion surgery she was no longer mostly bedridden and her POTS,…
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Jennifer Brea's Amazing ME/CFS Recovering Story: the Spinal Series Pt II
Jennifer Brea, the Unrest filmmaker, had been wheelchair-dependent for nearly all of her eight-year illness, at her lowest with breathing difficulties, flaccid limbs, numbness and speech problems. About six months before this post she underwent spinal…
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Jennifer Brea's Chronic Fatigue (ME/CFS) Recovering Story
Underwent spinal surgeries over several weeks to correct craniocervical instability (CCI) and tethered cord syndrome, wore a neck collar (Philadelphia or Aspen Vista) during recovery, and found the drug Mestinon (pyridostigmine) helpful for symptoms. She had…
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Could Craniocervical Instability Be Causing ME/CFS? (Jennifer)
The same post introduces filmmaker Jennifer Brea, describing severe neurological decline including respiratory-arrest episodes after a surgery-triggered relapse, leading to a diagnosis of craniocervical and atlantoaxial instability. She underwent…
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Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia and POTS? (Jeff)
Jeff was young, healthy and active before a viral infection with high fever triggered symptoms that progressed until he was bedbound, unable to chew food, and diagnosed with ME/CFS, POTS and mast cell activation syndrome. Years into his decline he learned he…
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List of ME/CFS Recovery and Improvement Stories
Danielle is listed reaching remission from severe ME/CFS after the same combination of craniocervical fusion and tethered-cord surgery, per the compiled list.
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List of ME/CFS Recovery and Improvement Stories
JenB is listed as cured of severe ME/CFS by a combination of craniocervical fusion and tethered-cord surgery, per the compiled list.
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Jen Brea Talking to GMT News
Index entries credit JenB first with Valcyte (antiviral) for some improvement, and later, more substantially, with CCI/AAI fusion plus tethered-cord surgery (detailed on her own Medium blog, not fetched here) after she was found to have spinal instability.…
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My Story of Craniocervical Instability, ME/CFS, and Tethered Cord
Jeff Wood's treatment progressed from a Philadelphia cervical collar (worn over a month) to a halo brace with four skull screws (worn several months) to skull-to-C2 fusion surgery in early 2018, guided by a dynamic CT scan with flexion and extension views;…