Connective Tissue Disorders: Collagen, EDS, CCI

This is the forum for connective tissue disorders like Ehlers-Danlos syndrome (EDS), and related conditions such as craniocervical instability (CCI).
SK2018
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Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS
113 114 115
Replies
2,291
Views
240,210
lenora
sb4
  • Poll
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Have you noticed symptoms of Connective Tissue degradation since onset of disease?
2 3
Replies
56
Views
9,286
Reading_Steiner
mattie
  • Poll
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Tracking CCI / AAI MRI & Treatment outcomes
23 24 25
Replies
482
Views
76,164
BaileyBeached
Pyrrhus
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ME/CFS Patients with Joint Hypermobility Show Larger Cerebral Blood Flow Reductions during Orthostatic Stress Testing... (van Campen et al., 2021)
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11
Views
2,067
Pyrrhus
SWAlexander
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Exercise Intolerance in Hypermobility: Systemic Vascular Distensibility relates to exercise capacity in connective tissue disease (Singh et al 2021)
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4
Views
522
bread.
RobeAnJa
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What’s the theory behind the connection between Ehlers-Danlos Syndrome (EDS) and ME/CFS? (Other than CCI/AAI)
2
Replies
21
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1,862
ChookityPop
Pyrrhus
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Vascular Compression: Summary of Discussions
Replies
11
Views
1,101
Rufous McKinney
Hip
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CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions (please answer whether tested positive or negative)
4 5 6
Replies
114
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16,368
TinaYesen
sb4
  • Sticky
Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With ME/CFS
Replies
8
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1,200
kangaSue
pattismith
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weakness of the collagen surrounding peripheral nerves in Ehlers-Danlos Syndrome (EDS)
Replies
3
Views
1,060
Pyrrhus
Hip
  • Poll
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POLL: Do You Have a Sacral Dimple on Your Lower Back? (Can be Medically Significant, and May be Linked to ME/CFS)
2
Replies
31
Views
5,445
bensmith
Jesse2233
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Recovery of 3 Severe ME/CFS Patients After Cervical Spinal Stenosis Surgery (2018 / Peter Rowe)
2
Replies
38
Views
6,475
Marky90
Hip
  • Sticky
Consensus Statement on Craniocervical Instability (CCI)
Replies
2
Views
3,532
pattismith
MikeC
Question about EDS
2 3
Replies
51
Views
2,721
vision blue
GlassCannonLife
Growing CCI issues from a few weeks bedbound?
Replies
5
Views
292
GlassCannonLife
purrsian
Looking for info on CCI/AAI diagnosis in Australia
Replies
11
Views
1,136
GlassCannonLife
S
Diagnosed Cervical Instability
Replies
10
Views
451
Carl
Hip
Doxycycline as a CCI treatment: low-dose doxycycline inhibits the MMP enzymes which break down collagen and elastin in ligaments
2 3 4
Replies
62
Views
8,171
Momentum
Jwarrior77
Has anyone noticed significant changes in their collagen? ( Vascular, Skin, Joints )
2 3
Replies
41
Views
3,813
Ethereal55
Wayne
Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues
7 8 9
Replies
168
Views
20,207
Violeta
Wayne
Washington Post Article: -- A doctor struggled with a rare, incurable syndrome [Ehlers-Danlos]. Now she helps others overcome it.
Replies
7
Views
1,014
lenora
ChookityPop
Are these symptoms sounding like connective tissue disease?
Replies
9
Views
702
Crux
J
My ME is in remission
9 10 11
Replies
208
Views
31,178
valentinelynx
humanrising
Jeff anyone who have consulted with Dr Bolonesse ... help confused!
2
Replies
30
Views
5,153
kewia
W
Cervical C1 PRP treatments in Canada?
Replies
4
Views
554
Nord Wolf
Hip
Link between craniocervical instability (CCI) and Dr Markov's bacterial dysbiosis theory of ME/CFS?
Replies
7
Views
826
godlovesatrier
ChookityPop
Anyone identified connective tissue disease through whole genome sequencing?
Replies
2
Views
658
lenora
pattismith
many patients with HSD/hEDS meet Fukada criteria for diagnosis of CFS 2021 UK
Replies
0
Views
470
pattismith
Sushi
Cusack protocol for EDS—reports from anyone trying it
Replies
13
Views
1,677
xebex
GlassCannonLife
Cervical spine stenosis?
Replies
3
Views
644
lenora
judyinthesky
Self measurement of CCI on MRI?
Replies
2
Views
601
judyinthesky
frozenborderline
In the hospital in nyc having bad flair post surgery. Need help , including in person help
Replies
16
Views
802
Jyoti
G
Spinal MRI test results. I’m looking for advice.
Replies
2
Views
671
Goldfinch
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