Connective Tissue Disorders: Collagen, EDS, CCI

This is the forum for connective tissue problems related to impaired collagen, such as abnormally droopy skin or hypermobile cartilage. This is also the place to discuss disorders like Ehlers-Danlos syndrome (EDS), vascular compression syndromes, and related conditions such as craniocervical instability (CCI).
sb4
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  • Poll
Have you noticed symptoms of Connective Tissue degradation since onset of disease?
2 3
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58
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13K
cheeseater
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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
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22
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3K
pattismith
pattismith
sb4
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Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With ME/CFS
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10
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2K
Bowser
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SK2018
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Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS
115 116 117
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2K
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301K
lenora
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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)
5 6 7
Replies
122
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21K
Rufous McKinney
Rufous McKinney
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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12
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3K
Insomniac
Insomniac
mattie
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Tracking CCI / AAI MRI & Treatment outcomes
23 24 25
Replies
482
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95K
BaileyBeached
BaileyBeached
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
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1K
bread.
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Pyrrhus
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Vascular Compression: Summary of Discussions
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11
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2K
Rufous McKinney
Rufous McKinney
pattismith
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weakness of the collagen surrounding peripheral nerves in Ehlers-Danlos Syndrome (EDS)
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3
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2K
Pyrrhus
Pyrrhus
Hip
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  • Poll
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
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9K
bensmith
bensmith
Jesse2233
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Recovery of 3 Severe ME/CFS Patients After Cervical Spinal Stenosis Surgery (2018 / Peter Rowe)
2
Replies
38
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8K
Marky90
Marky90
Hip
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Consensus Statement on Craniocervical Instability (CCI)
Replies
2
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5K
pattismith
pattismith
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
71
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13K
Hawk1
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IM Vitamin C Injections for hEDS... anyone tried this???
2
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24
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1K
Judee
Judee
H
Collagen Modulators
Replies
14
Views
496
Judee
Judee
B
  • Poll
CCI / AAI / chiari / instability /neck evaluation by Dr Gilete
2 3
Replies
56
Views
12K
Zebra
Zebra
S
Diagnosed Cervical Instability
2
Replies
31
Views
2K
kewia
kewia
H
Email to neurologist about MRI
2
Replies
23
Views
842
Husband of
H
Insomniac
Newbie- Does Hypermobility Spectrum or EDS rule out a diagnosis of CFS?
Replies
6
Views
451
heapsreal
heapsreal
B
Calcitriol - anyone know if I can buy it online?
Replies
0
Views
365
Bexy89
B
B
Are there any ideas for natural treatment of tethered cord and cci?
Replies
18
Views
810
YippeeKi YOW !!
YippeeKi YOW !!
crypt0cu1t
Could someone help me make sense of this?
Replies
5
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1K
crypt0cu1t
crypt0cu1t
H
Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?
2
Replies
28
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1K
lenora
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W
Where to get CCI prolotherapy / prp: caring medical, centeno clinic or other?
Replies
3
Views
560
Rufous McKinney
Rufous McKinney
B
Sleeping on the belly with head to the side - is it bad for neck issues?
Replies
8
Views
812
Rufous McKinney
Rufous McKinney
Zebra
hEDS: the causal genetic mutation may have been identified!
Replies
0
Views
587
Zebra
Zebra
MikeC
Question about EDS
2 3
Replies
52
Views
5K
lint7
L
GlassCannonLife
Growing CCI issues from a few weeks bedbound?
Replies
5
Views
925
GlassCannonLife
GlassCannonLife
purrsian
Looking for info on CCI/AAI diagnosis in Australia
Replies
11
Views
2K
GlassCannonLife
GlassCannonLife
Jwarrior77
Has anyone noticed significant changes in their collagen? ( Vascular, Skin, Joints )
2 3
Replies
41
Views
6K
Ethereal55
E
Wayne
Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues
7 8 9
Replies
168
Views
27K
Violeta
V
Wayne
Washington Post Article: -- A doctor struggled with a rare, incurable syndrome [Ehlers-Danlos]. Now she helps others overcome it.
Replies
7
Views
2K
lenora
L
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