Is m.e. yet another form of EDS?

Oliver3

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This seems to fit with my history and disease development perfectly. High Stress Vulnerability, ADHD, abstract thinker. It runs in my family as well, father was a very talented musician with high stress vulnerability and psychological problems, my brother is highly stress vulnerable and we all have autoimmune diseases. I need to look for those mutations.[/QUOTE

Are you familiar with the rccx theory?? The basic premise is all these diseases share mutations.
As you point out. Can make us very gifted, very sensitive individuals, but we pay a price for that.
I think you've summarised it perfectly. We are a phenotype.
Do you know Bob naviaux work.. he says that there is a certain phenotype genetically to these stress conditions such as PTSD, m.e.
 

Oliver3

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T
There is currently no gene marker for hEDS, but…. https://web.musc.edu/about/news-center/2021/07/14/musc-researchers-announce-gene-mutation-discovery-associated-with-eds-ehlers-danlos

There is current research happening at Medical University of South Carolina. If you have a dx of EDS, you may contact them at the email on this page to participate.
https://medicine.musc.edu/departments/regenerative-medicine/research/norris-lab

It really isn’t so much that hEDS is poorly understood, it’s more that the medical community hasn’t cared. I was told by rheumatology that I had seronegative RA & put on meds. When I did some digging on my own & discovered I have EDS, she told me she figured it was that, but it’s not big deal. No big deal has turned out to be 2 neurosurgeries in 18 months (no, I am not comfortable giving specifics) and the possibility of needing a third in the near future.
I had a so-called ME specialist tell me that I was making too big a deal out of EDS because her kids probably have it and it can’t be that bad (summarized). That was the last time that clinic got any of my money.

On the other hand, my neurosurgeon is amazing, the PT I used after my 1st surgery was wonderful & my primary is supportive. It can BE understood if the doc WANTS to understand it.


Here is an informal interview with one of the researchers
The science is on its infancy. I don't disagree that the will is not there. You need the will and the knowledge. Just like m.e. it's an underfunded area where patients lead the way
 

Boba

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@Oliver3
I read about it after your post. It seems pretty logical to me. My lifeline fits everything. Adrenaline and stress were big problems for me all my life. I know about the Naviaux cdr theory. This again makes sense. Would have been good to know before becoming bedridden… I mean it doesn’t help afterwards, we should be there warned man. I just had 1 year where I decided to go beyond my limits to achieve sth., which screwed me. Maybe if they identify those genes crispr might helpi!?
 

Oliver3

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@Oliver3
I read about it after your post. It seems pretty logical to me. My lifeline fits everything. Adrenaline and stress were big problems for me all my life. I know about the Naviaux cdr theory. This again makes sense. Would have been good to know before becoming bedridden… I mean it doesn’t help afterwards, we should be there warned man. I just had 1 year where I decided to go beyond my limits to achieve sth., which screwed me. Maybe if they identify those genes crispr might helpi!?
Yes, CRISPR is a hope, but there also be medicines that may help a lot.
Im pursuing a diagnosis of eds...or at least being investigated for it.
You're right about pushing through.
However, I would say, knowing what's going on with you and with me, might help us. To have a firm diagnosis adds us to a growing number of people and makes us less invisible to the medical community.
It's also good to get a specific diagnosis for when treatment s do come along.
There are many people with EDS such as Ron Davies who've lived normal , long lives.
I think you hit the nail on the head. You pushed too far. Me too. Ron says that's what creates the metabolic trap.
If the trap is correct, our illness can be reversed the same day as incredible as it sounds, so there is hope
 

lenora

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Well, let's not get too overheated about this matter. I can remember when EDS was first added to many sites (bear in mind that this was the early days of setting them up). No one could understand why, but these people were obviously sick. To the best of my knowledge The Chiari Institute in NYC was the first to do proper testing on them.

Now the interesting thing is that in full blown cases, most look alike. Fair, chubby faces, nice teeth and fair eyes. I know a family and have for years that follows this pattern. Double joined, looser skin, certain things that accompany it, including terrible pain in a lot of cases. I know a case where wife has EDS, the husband (both unknown at the time) and with gene testing, all three of their children have it. Now that's full blown EDS. If that supposedly never existed all those years ago, then why is it so hard to believe that we have many variants of it today? Medicine learns.

If Jen Brea says she doesn't have it, then she doesn't. She's had outstanding medical care available to her and I hope she's doing much better.

I think most people with scoliosis, especially l. sided (associated with neurological problems) have some variant of it. I fall into that category, but at my age (74) I'm not going to look for one more problem. If I have it, it's something I've had for my entire life, I was born with it.

We should be asking questions like: Are there special clinics where people can go for help, is surgery always necessary? Many of these people suffer greatly, some not so much. We have so much to learn...we're only at the beginning. Anyone who has additional comments to make, kindly add them as we do need this information.

I don't mean to break in on the subject, but thought this info may be helpful...and who knows, perhaps I can learn something new from you. Yours, Lenora.
 
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I'm heterozygous for some EDS gene. I'm generally confused about the genetic part of all this.

I wish I could find an actual expert on the neck. To tell me if my head is in fact going to fall off, one day.
 

hapl808

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I'm heterozygous for some EDS gene. I'm generally confused about the genetic part of all this.

I wish I could find an actual expert on the neck. To tell me if my head is in fact going to fall off, one day.
I believe the geneticists are equally confused about this, hence why I think it's poorly understood. They're constantly identifying new traits and genes and pathologies, and I'm not clear how they're doing it or how reliable even the genetic diagnoses may be as far as symptomatic experience.
 

rel8ted

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I'm saying it's an undiagnosed version of EDS..one that we don't know if yet. Perhaps an acquired eds.
Jen brea put that statement out into a public forum. So we can speculate all we want .
Um, asking a legitimate question backed up by the Twitter post of the person you are referencing is not shaming. It is asking a question.
 

Hip

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I'm saying it's an undiagnosed version of EDS..one that we don't know if yet.
ME/CFS is statistically linked to various comorbidities, like for example IBS. If we are to follow this way of thinking, we could equally assert that IBS is the cause of ME/CFS, and ME/CFS patients who do not have IBS symptoms have a version of IBS unknown to science.

In other words, if we use this logic for EDS, the same logic would apply to all the other comorbidities of ME/CFS.

Comorbid conditions that are statistically more prevalent in ME/CFS or fibromyalgia patients include:

IBS, interstitial cystitis and overactive bladder (irritable bladder), chronic pelvic pain syndrome, endometriosis, Raynaud's disease, atopy (predisposition to allergies), increased allergies, multiple chemical sensitivity, temporomandibular joint disorder, myofascial pain syndrome, attention deficit hyperactivity disorder, depression, generalized anxiety disorder, eating disorders, low T3 syndrome, Hashimoto's thyroiditis, prolapsed mitral valve, metabolic syndrome, Sjögren's syndrome (sicca syndrome), postural orthostatic tachycardia syndrome (POTS) and neurally mediated hypotension.
 
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Oliver3

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ME/CFS is statistically linked to various comorbidities, like for example IBS. If we are to follow this way of thinking, we could equally assert that IBS is the cause of ME/CFS, and ME/CFS patients who do not have IBS symptoms have a version of IBS unknown to science.

In other words, if we use this logic for EDS, the same logic would apply to all the other comorbidities of ME/CFS.

Comorbid conditions that are statistically more prevalent in ME/CFS or fibromyalgia patients include:

IBS, interstitial cystitis and overactive bladder (irritable bladder), chronic pelvic pain syndrome, endometriosis, Raynaud's disease, atopy (predisposition to allergies), increased allergies, multiple chemical sensitivity, temporomandibular joint disorder, myofascial pain syndrome, attention deficit hyperactivity disorder, depression, generalized anxiety disorder, eating disorders, low T3 syndrome, Hashimoto's thyroiditis, prolapsed mitral valve, metabolic syndrome, Sjögren's syndrome (sicca syndrome), postural orthostatic tachycardia syndrome (POTS) and neurally mediated hypotension.
No I don't think that's a correct analogy. IBS is likely a result of EDS. Eds is the bedrock..the connective tissue base from which all these comorbidities spread.
All people with the above problems have connective tissue disease.
Pots is definitely an eds related disease.
You go through that list, they all are connective tissue related..mitral valve.etc.
It's a matter of reverse engineering all these comorbidities. They all at their base , are related to a problem with connective tissue.
IBS is not a root cause. It's obviously a down stream set of cluster illnesses.
You're taking all context and sense out.
Reverse engineer, the weaker the connective tissue, the more of these comorbidities occur...just follow the path back to the bedrock of the human body. Connective tissue. Connective tissue goes before IBS...you have strong connective tissue, your less likely to have spasticity in the bowel
 

Oliver3

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Well, let's not get too overheated about this matter. I can remember when EDS was first added to many sites (bear in mind that this was the early days of setting them up). No one could understand why, but these people were obviously sick. To the best of my knowledge The Chiari Institute in NYC was the first to do proper testing on them.

Now the interesting thing is that in full blown cases, most look alike. Fair, chubby faces, nice teeth and fair eyes. I know a family and have for years that follows this pattern. Double joined, looser skin, certain things that accompany it, including terrible pain in a lot of cases. I know a case where wife has EDS, the husband (both unknown at the time) and with gene testing, all three of their children have it. Now that's full blown EDS. If that supposedly never existed all those years ago, then why is it so hard to believe that we have many variants of it today? Medicine learns.

If Jen Brea says she doesn't have it, then she doesn't. She's had outstanding medical care available to her and I hope she's doing much better.

I think most people with scoliosis, especially l. sided (associated with neurological problems) have some variant of it. I fall into that category, but at my age (74) I'm not going to look for one more problem. If I have it, it's something I've had for my entire life, I was born with it.

We should be asking questions like: Are there special clinics where people can go for help, is surgery always necessary? Many of these people suffer greatly, some not so much. We have so much to learn...we're only at the beginning. Anyone who has additional comments to make, kindly add them as we do need this information.

I don't mean to break in on the subject, but thought this info may be helpful...and who knows, perhaps I can learn something new from you. Yours, Lenora.
That's my point..regarding Jen brea,.medicine hasn't got there yet, as I understand it, she had ligaments in the neck that weakened over time and led to the cci.thats a connective tissue problem but m.e I just feel in my bones will be a sliding scale of certain forms of as yet undiscovered variations on an eds type.
Just like autism is a spectrum disorder. No two cases are the same but there are underlying components that underpin the condition.
 

Hip

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You go through that list, they all are connective tissue related..mitral valve.etc.
Not really:

IBS has now been shown to involve certain antibodies, and so may be an autoimmune disease.

Interstitial cystitis and overactive bladder are linked to dysgunction of the GAG layer in the bladder.

Raynaud's disease is involves problems in regulation of blood vessel dilation, and involves an overreaction by the sympathetic nervous system (which contracts blood vessels).

Allergies are related to autoimmunity, and involve immune dysfunction.

Attention deficit hyperactivity disorder, depression, generalized anxiety disorder and eating disorders are mental health conditions which will involve the brain.

Low T3 syndrome is an endocrine disorder, and may be autoimmune.

Hashimoto's disease is an autoimmune disorder.

Prolapsed mitral valve involves connective tissue, since this heart valve is made from connective tissue. But studies have found viral infections in the heart valve of such patients, and we know that infections can trigger the release of MMP enzymes which weaken connective tissue.

Metabolic syndrome involves abdominal obesity, high blood pressure, high blood sugar, etc.

Sjögren's syndrome is an autoimmune disease linked to saliva gland infection of coxsackievirus B4.

Increasing evidence indicates POTS is autoimmune, at least in some subsets.



I cannot see any major role that connective tissue disorders are playing in the above diseases.


However, if you have Ehlers-Danlos syndrome (EDS), then one study found ALL diseases were significantly more common in EDS patients.

So if you have EDS, it seems you are more prone to getting diseases of all sorts.


The reason EDS patients are more susceptible to all diseases may not be directly due to connective tissue dysfunction, but might conceivably involve the immune weakness found in EDS.

People like Paul Ewald think that nearly all chronic diseases and cancers will turn out to be caused by persistent infectious pathogens in the body. And it is certainly a fact that most diseases have been linked to persistent infections.

So if it is true that pathogens are the hidden cause of most diseases, then the immune weakness of EDS patients may explain why they are more prone to chronic disease.
 

ruben

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I would definitely say though that some doctors are far too hasty at putting IBS on patients medical records when some of these people have very little in common with us who regularly visit this forum. They just have relatively minor digestive issues, not something life changing.
 

Oliver3

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Not really:

IBS has now been shown to involve certain antibodies, and so may be an autoimmune disease.

Interstitial cystitis and overactive bladder are linked to dysgunction of the GAG layer in the bladder.

Raynaud's disease is involves problems in regulation of blood vessel dilation, and involves an overreaction by the sympathetic nervous system (which contracts blood vessels).

Allergies are related to autoimmunity, and involve immune dysfunction.

Attention deficit hyperactivity disorder, depression, generalized anxiety disorder and eating disorders are mental health conditions which will involve the brain.

Low T3 syndrome is an endocrine disorder, and may be autoimmune.

Hashimoto's disease is an autoimmune disorder.

Prolapsed mitral valve involves connective tissue, since this heart valve is made from connective tissue. But studies have found viral infections in the heart valve of such patients, and we know that infections can trigger the release of MMP enzymes which weaken connective tissue.

Metabolic syndrome involves abdominal obesity, high blood pressure, high blood sugar, etc.

Sjögren's syndrome is an autoimmune disease linked to saliva gland infection of coxsackievirus B4.

Increasing evidence indicates POTS is autoimmune, at least in some subsets.



I cannot see any major role that connective tissue disorders are playing in the above diseases.


However, if you have Ehlers-Danlos syndrome (EDS), then one study found ALL diseases were significantly more common in EDS patients.

So if you have EDS, it seems you are more prone to getting diseases of all sorts.


The reason EDS patients are more susceptible to all diseases may not be directly due to connective tissue dysfunction, but might conceivably involve the immune weakness found in EDS.

People like Paul Ewald think that nearly all chronic diseases and cancers will turn out to be caused by persistent infectious pathogens in the body. And it is certainly a fact that most diseases have been linked to persistent infections.

So if it is true that pathogens are the hidden cause of most diseases, then the immune weakness of EDS patients may explain why they are more prone to chronic disease.
Autoimmune diseases are most often seen in connective tissue disease. There is a definite link. So that takes care of all the autoimmune disease you mentioned.
The brain. What accounts for that hyperactivity we see in ADHD, PTSD etc.
I'm betting you anything the tissue structure is less strong in there.
I know a couple of people with eds who have brain tumours, chiari and anuerysms. They also have ADHD, PTSD like symptoms and neurally mediated pots. And these are not senior people. Mid 40s.
Metabolic disease is a lifestyle disease mainly. Although glycolosis is a dodgy part of our illness. But I think that's years of a sad diet hitting organs without much resistance.
The cell integrity in people with m.e./ eds is weaker. This can lead to pathogen invasion, electrolyte imbalance etc. I think the connection between eds and autoimmuniy will get clearer but since much of autoimmunity comes from a leaky gut, it's those not so tight junctions caused by poor diet mixed with poor connective tissue that causes the autoimmunity. Likely with many unexplained factors to do with connective tissue and autoimmuniy.
I remember reading about anthropologists looking at a tribe , traditional people in South America recently.
They were filled with pathogens and virus. Yet they were as healthy as anything. Great cardio, great muscle tone, 80 years with a westerners 50 year old profile. They live symbiotically with the pathogens in them.
It's like they're finding with long covid. Epstein Barr reactivation. I'm people with eds, Epstein Barr reacts much more easily. Why is that. What's the link between immune strength and connective tissue. And connective tissue and autoimmunity.
Dr Ron has had heart trouble as he developed thematic fever as a child. Same as a family member. I think there is some way in which eds connective tissue doesn't deal with viruses well. Ron has eds.
I really think we are a phenotype. If you keep running the disease back, right to the verycore it's the connective tissue and at a cellular level, the lack of cell wall integrity.
Indeed this plays out on a psycho social level, almost as a metaphor . How many people do you know with connective tissue disorder who are not good with boundaries, or are empaths, or feel extremely deeply, much more than your " normie". Again, I think this stems from connective tissue. I can't prove it but it feels right to me.
Spiritually, emotionally and sensorially we are prone to invasion from the outside world. I believe if you retro engineer this, it starts with cell wall integrity. Cell wall strength.
Of course evolutionary, there are advantages to tribal members being built like us. Sensitive to change, born followers, yet still oddly driven and curious and gifted.
You ever met those guys rich in collagen and muscle tone, impervious to stress and unnoticing of energy dynalmibs. Bring them forward 50 years later when they have almost an acquired ehlers danlos..their startle reflexes are bad , mood swings, much more autistic lite in their traights. Of course their connective tissue is much less strong then
I really think connective tissue is about resilience in life. After all, it's one of the major reasons we snuff it in the end.
It's my gut feeling that it's at the heart of this and everything else is downstream reaction
 

Boba

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Autoimmune diseases are most often seen in connective tissue disease. There is a definite link. So that takes care of all the autoimmune disease you mentioned.
The brain. What accounts for that hyperactivity we see in ADHD, PTSD etc.
I'm betting you anything the tissue structure is less strong in there.
I know a couple of people with eds who have brain tumours, chiari and anuerysms. They also have ADHD, PTSD like symptoms and neurally mediated pots. And these are not senior people. Mid 40s.
Metabolic disease is a lifestyle disease mainly. Although glycolosis is a dodgy part of our illness. But I think that's years of a sad diet hitting organs without much resistance.
The cell integrity in people with m.e./ eds is weaker. This can lead to pathogen invasion, electrolyte imbalance etc. I think the connection between eds and autoimmuniy will get clearer but since much of autoimmunity comes from a leaky gut, it's those not so tight junctions caused by poor diet mixed with poor connective tissue that causes the autoimmunity. Likely with many unexplained factors to do with connective tissue and autoimmuniy.
I remember reading about anthropologists looking at a tribe , traditional people in South America recently.
They were filled with pathogens and virus. Yet they were as healthy as anything. Great cardio, great muscle tone, 80 years with a westerners 50 year old profile. They live symbiotically with the pathogens in them.
It's like they're finding with long covid. Epstein Barr reactivation. I'm people with eds, Epstein Barr reacts much more easily. Why is that. What's the link between immune strength and connective tissue. And connective tissue and autoimmunity.
Dr Ron has had heart trouble as he developed thematic fever as a child. Same as a family member. I think there is some way in which eds connective tissue doesn't deal with viruses well. Ron has eds.
I really think we are a phenotype. If you keep running the disease back, right to the verycore it's the connective tissue and at a cellular level, the lack of cell wall integrity.
Indeed this plays out on a psycho social level, almost as a metaphor . How many people do you know with connective tissue disorder who are not good with boundaries, or are empaths, or feel extremely deeply, much more than your " normie". Again, I think this stems from connective tissue. I can't prove it but it feels right to me.
Spiritually, emotionally and sensorially we are prone to invasion from the outside world. I believe if you retro engineer this, it starts with cell wall integrity. Cell wall strength.
Of course evolutionary, there are advantages to tribal members being built like us. Sensitive to change, born followers, yet still oddly driven and curious and gifted.
You ever met those guys rich in collagen and muscle tone, impervious to stress and unnoticing of energy dynalmibs. Bring them forward 50 years later when they have almost an acquired ehlers danlos..their startle reflexes are bad , mood swings, much more autistic lite in their traights. Of course their connective tissue is much less strong then
I really think connective tissue is about resilience in life. After all, it's one of the major reasons we snuff it in the end.
It's my gut feeling that it's at the heart of this and everything else is downstream reaction
Very well written. I like your theory.
This part describes me very well:
Sensitive to change, born followers, yet still oddly driven and curious and gifted
I was always standing out with my abstract thinking, but always in self doubt which lead me to change careers multiple times. Nothing was satisfying everything boring. ADHD and anxiety diagnosis in my mid 30s. When I got hit with ME my diet was very clean, but my body already broken.
 

Oliver3

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Very well written. I like your theory.
This part describes me very well:


I was always standing out with my abstract thinking, but always in self doubt which lead me to change careers multiple times. Nothing was satisfying everything boring. ADHD and anxiety diagnosis in my mid 30s. When I got hit with ME my diet was very clean, but my body already broken.
Hey thanks. Yes. Don't forget there's so much pollution in our environment. That's what Bob naviauxs theory on us is. The cell danger response. Our bodies shut down because the cells and mitochondria go into emergency mode.
Obviously if your already having cell wall integrity problems through eds, the cell danger response will trigger more easily.
Mast cells are part of that triggering and part of eds. They're much more active in eds..they excite the glial cells in the brain. Cause mental problems. They also weaken bone and tissue if stuck in a chronic state further worsening us.
I follow a woman called Liz Parrish, whose set up a company to try and regrow tissue through tekemore relengthening . She has increased her own muscle mass and metabolic markets of ageing. I hope people like this can help s in the future.
I'm totally with you on the abstract thoughts.
I'm having to train myself to think like a normie. It's a frustrating and sometimes rewarding sometimes alienating thing isn't it
 

JES

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It's my gut feeling that it's at the heart of this and everything else is downstream reaction
Well, it's a nice idea, but reality in medicine is often more complicated than what us humans as pattern-seeking creatures like to think. For example all cancer was once thought to be more or less the same disease and respond to similar treatments, but the deeper we dig, the more complicated the picture gets.

I don't see how EDS can be at root cause of what I have. I developed POTS issues almost overnight long ago. After that my POTS has also been gone for long periods of time only to re-appear later in life. I fully recover from my symptoms whenever I get the cold. There is nothing I can at least subjectively feel wrong when I had those moments of full recovery, so there is no permanent damage from EDS at least in my case. If it was all EDS genes at play, ME/CFS should behave more predictably in my view and we shouldn't be seeing any recoveries.

I guess it could still be that EDS is somehow as an underlying factor making me more susceptible to for example viruses, like @Hip mentioned. But I have serious doubts there is any EDS-related treatment breakthrough going to happen for ME/CFS patients during my lifetime. If I'm more susceptible to viruses and autoimmunity due to EDS, then I'm almost certain it would be easier to develop treatments targeting those viruses than gene therapy or something that directly treats effects of EDS.