HOW on earth is EDS or any other CTD not the soil in which ME flourishes?

Tammy

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This is what Anthony William says about Connective Tissue Disorders (including Ehlers-Danlos Syndrome). "These conditions are caused by a variety of EBV that's feeding off of different toxins in the liver, including old DDT and other pesticides, mercury, and some solvents. Many of these can be passed down through a family line, inherited from past generations. As the virus thrives on this fuel blend, it releases both neurotoxins and a specific connective tissue toxin, a combination that weakens connective tissue and inflames nerves at the same time. Because this is a late-stage EBV condition, it's a sign that you have thyroid issues, too, though it's not a thyroid symptom."
 
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ahmo

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I haven't read most of this thread. I'm just responding to add another anecdote to the collection. Before ME I had Dupuytrens contractures in both hands. I was in my 40's and female, so not the obvious demographic.

Later I had frozen shoulders on both sides, 10 years apart. Don't know if this is considered connective tissue, but is autoimmune.

And now I've recently been diagnosed w/ scleroderma, autoimmune and connective tissue disorder. Fortunately mine is limited to skin/fascia, not my organs.

Ah, and after reading Tammy, my thyroid stopped working when I was 13. My first autoimmune prob. I had close relatives, one on each side, w/ MS, also RA, asthma, allergies in family.
 

bread.

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Interesting!

That „confirms“ the observation that anyone can make when talking to EDS patients - there is a significant overlap in many aspects (onset, symptoms, duration, longitudinal course) of these diseases.

I do believe the prevalance numbers that Dr. H uses are completely off though, I repeatedly said why I think that could be the case. I obviously can not doubt his 1 in 20 figure but would guess that even these could potentially be higher as he does not diagnose heds himself.

Also, 2 eds doctors told me that it is very likely that the numbers for heds (less so for the other forms, but probably also, according to them) are higher in the general population than what Dr. H is saying here. One said that the prevalance numbers we have are „out of date“.

I feel somewhat delighted that Dr. H made the Enterovirus and EDS connection I have to say, I believe there is something going in that direction.
 

JES

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Interesting!

That „confirms“ the observation that anyone can make when talking to EDS patients - there is a significant overlap in many aspects (onset, symptoms, duration, longitudinal course) of these diseases.

I do believe the prevalance numbers that Dr. H uses are completely off though, I repeatedly said why I think that could be the case. I obviously can not doubt his 1 in 20 figure but would guess that even these could potentially be higher as he does not diagnose heds himself.

Also, 2 eds doctors told me that it is very likely that the numbers for heds (less so for the other forms, but probably also, according to them) are higher in the general population than what Dr. H is saying here. One said that the prevalance numbers we have are „out of date“.

I feel somewhat delighted that Dr. H made the Enterovirus and EDS connection I have to say, I believe there is something going in that direction.
If it's the case that a) EDS is much more prevalent than we think, b) there is a significant overlap between EDS and ME/CFS and c) EDS is somehow involved in the ME/CFS pathology, then as I see it, it's actually bad news. What most of us are hoping for is to get some kind of working treatment during our lifetime and EDS isn't from my understanding something we can treat. Ok, patients can go and get a CCI surgery, but the risks from such a surgery, the financial costs, accessibility etc., only makes this an option for a small minority of the patient group.
 

bread.

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If it's the case that a) EDS is much more prevalent than we think, b) there is a significant overlap between EDS and ME/CFS and c) EDS is somehow involved in the ME/CFS pathology, then as I see it, it's actually bad news. What most of us are hoping for is to get some kind of working treatment during our lifetime and EDS isn't from my understanding something we can treat. Ok, patients can go and get a CCI surgery, but the risks from such a surgery, the financial costs, accessibility etc., only makes this an option for a small minority of the patient group.

the reason for you and me being sick does not really care about what is good or bad in your or my view, we have to find out what is going on without being biased towards potential outcome.

I will say it again, I do not believe they (eds and me/cfs) are necessarily the same thing. CCI is a VERY small percentage of issues that come with EDS. It is entirely possible that a metabolic trap is more easily triggered in EDS patients, you could get out of the trap and be much better and still have EDS but be much more healthy.
 

JenB

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If it's the case that a) EDS is much more prevalent than we think, b) there is a significant overlap between EDS and ME/CFS and c) EDS is somehow involved in the ME/CFS pathology, then as I see it, it's actually bad news. What most of us are hoping for is to get some kind of working treatment during our lifetime and EDS isn't from my understanding something we can treat. Ok, patients can go and get a CCI surgery, but the risks from such a surgery, the financial costs, accessibility etc., only makes this an option for a small minority of the patient group.
Yeah, but ME isn’t something we can treat right now, either. I am not sure how learning more is ever bad news.

And if it were a drug, it would have taken 10 years from first discovery until most people every had access, probably more. If the research happens, there will be hundreds of spine surgeons around the world qualified to do these surgeries.
 

JenB

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I agree. Just nitpicky: I'd go with neurosurgeons, some of whom are spine surgeons, but not spine surgeons in general, because most are orthopedic surgeons. I'd not want an orthopod that close to my brain...:eek:
Lol. Yes, neurosurgeons who specialize on disorders of the spine!

Many of them already due C0-C2 fusions. Just rarely. And they do tethered cord releases, but often fail to recognize them in adults

Neurologists are the big hurdle, though! Having the evidence base and training to refer those of us with these diagnoses to neurosurgeons...
 

bread.

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@bread. I don´t know if this will have any significance, but I have them also.

Nice photo, you should make a thread with a poll on it.
I am not a „pollster“, can you do it, maybe? haha

Thank you for the compliment, are you hitting on me? haha

I do believe it has a significance, but obviously do not know, there are very old ramsay documents that speak of „loss of fingerprints“.
 

valentinelynx

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how do you figure if your fingerprint are lost?
I needed to get fingerprinted some years ago, for a license to practice medicine in Ohio. I'd had difficulty previously, so first I treated my fingertips with lotion (the one suggested by the FBI—"Cornhusker's Lotion) for a few months, then I made sure to go to a place that did them electronically for the best outcome. The poor worker there at the sheriff's office tried for an hour to get usable fingerprints from me, but failed. I gave up on the license application (I didn't really need to practice in Ohio) because to get the license without fingerprints I would have had to make 2 more attempts and then get a letter from the FBI saying I was "un-printable" (or something like that...). I did not want to subject the workers there to another two hours of wasted time!

When I tell people this, I get jokes about robbing banks. But it's pretty inconvenient in places that use fingerprints for accessing things like Pyxis machines (for dispensing medications in the OR). Not all states require fingerprints for licensure, fortunately!
 

percyval577

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I am not a „pollster“, can you do it, maybe? haha

Thank you for the compliment, are you hitting on me? haha

I do believe it has a significance, but obviously do not know, there are very old ramsay documents that speak of „loss of fingerprints“.
Haha, I am probabaly rather very shy (and)

I remember that @sb4 has recently made a thread on tissue degradation, and with a poll:
https://forums.phoenixrising.me/thr...sue-degradation-since-onset-of-disease.76478/ (also the fingerprints have been mentioned in the discussion).

I wonder if the wrinkles on the finger pulp could be from a lost of hyaluronic acid?
I wonder if if it is due to a dysregulation of
 
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I do believe it has a significance, but obviously do not know, there are very old ramsay documents that speak of „loss of fingerprints“.
Yes I have these long ridges and folds...and missing fingerprints (hiding, diminished behind the folds). I don't have EDS (presumably).

This is supposedly evidence of loss of collagen. And studied in some recent research..mentioned in another thread on PR.
 
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Yep, if i've overstated the case for emphasis, then i'm saying there is too much similarity for these 2 diseases, if it is two diseases not to be related. I can't believe its not been picked up by scientists until recently. It's so flamin obvious!
I wrote to the Open Medicine Foundation to look at the work of Liz Parrish. She's working with telemores and stemcells and has increased her own muscle mass and tissue strength by doing so. The people filtering info at OMF said stem cells weren't the way forward (i'm thinking they are deeply entrenched in the metabolic trap hypothesis) But surely stem cell therapy and regenberative medicine are going to be the way forward for victims of collagen loss and weak structures?
Prolotherapy can also be a way to stabilise neck ligaments..i hope the team know about these options
Prolotherapy made my CCI worse and ME/CFS which had gone into partial remission resurface with a vengeance. Be careful with cervical Prolo.