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
114 115 116
Replies
2,305
Views
249,522
Jaker
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
118
Views
17,371
Hip
sb4
  • Poll
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Have you noticed symptoms of Connective Tissue degradation since onset of disease?
2 3
Replies
56
Views
9,938
Reading_Steiner
mattie
  • Poll
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Tracking CCI / AAI MRI & Treatment outcomes
23 24 25
Replies
482
Views
79,765
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)
Replies
11
Views
2,379
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)
Replies
4
Views
749
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
Views
2,184
ChookityPop
Pyrrhus
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Vascular Compression: Summary of Discussions
Replies
11
Views
1,453
Rufous McKinney
sb4
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Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With ME/CFS
Replies
8
Views
1,466
kangaSue
pattismith
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weakness of the collagen surrounding peripheral nerves in Ehlers-Danlos Syndrome (EDS)
Replies
3
Views
1,292
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
6,157
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
6,808
Marky90
Hip
  • Sticky
Consensus Statement on Craniocervical Instability (CCI)
Replies
2
Views
3,874
pattismith
crypt0cu1t
Could someone help me make sense of this?
Replies
4
Views
352
HurrySaveMe
B
  • Poll
CCI / AAI / chiari / instability /neck evaluation by Dr Gilete
2 3
Replies
47
Views
8,844
Pyrrhus
B
Sleeping on the belly with head to the side - is it bad for neck issues?
Replies
8
Views
220
Rufous McKinney
S
Diagnosed Cervical Instability
Replies
15
Views
788
Rufous McKinney
Zebra
hEDS: the causal genetic mutation may have been identified!
Replies
0
Views
202
Zebra
MikeC
Question about EDS
2 3
Replies
52
Views
3,125
lint7
GlassCannonLife
Growing CCI issues from a few weeks bedbound?
Replies
5
Views
501
GlassCannonLife
purrsian
Looking for info on CCI/AAI diagnosis in Australia
Replies
11
Views
1,334
GlassCannonLife
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
8,786
Momentum
Jwarrior77
Has anyone noticed significant changes in their collagen? ( Vascular, Skin, Joints )
2 3
Replies
41
Views
4,239
Ethereal55
Wayne
Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues
7 8 9
Replies
168
Views
21,396
Violeta
Wayne
Washington Post Article: -- A doctor struggled with a rare, incurable syndrome [Ehlers-Danlos]. Now she helps others overcome it.
Replies
7
Views
1,297
lenora
ChookityPop
Are these symptoms sounding like connective tissue disease?
Replies
9
Views
916
Crux
J
My ME is in remission
9 10 11
Replies
208
Views
32,533
valentinelynx
humanrising
Jeff anyone who have consulted with Dr Bolonesse ... help confused!
2
Replies
30
Views
5,455
kewia
W
Cervical C1 PRP treatments in Canada?
Replies
4
Views
800
Nord Wolf
Hip
Link between craniocervical instability (CCI) and Dr Markov's bacterial dysbiosis theory of ME/CFS?
Replies
7
Views
1,085
godlovesatrier
ChookityPop
Anyone identified connective tissue disease through whole genome sequencing?
Replies
2
Views
850
lenora
pattismith
many patients with HSD/hEDS meet Fukada criteria for diagnosis of CFS 2021 UK
Replies
0
Views
718
pattismith
Sushi
Cusack protocol for EDS—reports from anyone trying it
Replies
13
Views
2,163
xebex
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