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

[bread.]

I do not want to say to much of the same stuff over and over again so lets see where this is going! I hope that this thread will start a worthwile discussion regarding connective tissue disease and their vast consequences on the human body, I think this topic is still completely overlooked by most scientists, doctors and patients!

My personal opinion is quite apparent from the headline and other posts I wrote here and on other forums.

For a start, please just tell me a percentage of your symptoms that are not directly or indirectly connected to your connective tissue!

 

[Hip]

There is an EDS part of this forum where people have been proposing such ideas for the last 10 years.

 

[Hip]

If you look at this 2012 video at 13:12, Dr Fraser Henderson shows a chart listing the diseases which can result in CCI. Here is that chart:

So according to this chart, CCI can be caused by:

Acute causes:

• Physical trauma (like a car accident or sporting injury)

Chronic causes:

• Developmental Chiari
• Occipitalization of atlas (congenital fusion of the atlas to the occipital bone of the skull)
• Klippel-Feil syndrome (congenital musculoskeletal condition involving fusion of at least two vertebrae)

Degenerative or inflammatory causes:

• Rheumatoid arthritis
• Lupus
• Neoplasm (an abnormal growth of tissue, such as cancer)
• Infections
• Surgery

Genetic hypermobility connective tissues disorder causes:

• Hypermobile EDS
• Marfan syndrome
• Stickler syndrome
• Down's syndrome

 

[bread.]

If you look at this 2012 video at 13:12, Dr Fraser Henderson shows a chart listing the diseases which can result in CCI. Here is that chart:

View attachment 34362

So according to this chart, CCI can be caused by:

Acute causes:

• Physical trauma (like a car accident or sporting injury)

Chronic causes:

• Developmental Chiari
• Occipitalization of atlas (congenital fusion of the atlas to the occipital bone of the skull)
• Klippel-Feil syndrome (congenital musculoskeletal condition involving fusion of at least two vertebrae)

Degenerative or inflammatory causes:

• Rheumatoid arthritis
• Lupus
• Neoplasm (an abnormal growth of tissue, such as cancer)
• Infections
• Surgery

Genetic hypermobility connective tissues disorder causes:

• Hypermobile EDS
• Marfan syndrome
• Stickler syndrome
• Down's syndrome

great, did not know there was an EDS part to this forum, seems not to be very frequented to me !

The connection to EDS. or ctd is so much more than just cci or aai.

You can easily connect it to almost every scientific finding that has popped up repeatedly over the last years in me/cfs.

You could even argue that you would probably (no data) find persistent Enteroviruses (if this turns out to be of value in me/cfs, I know this is your expertise) more often in EDS patients than in people without it. It is not difficult to see at all why this could be the case!

What about bacterial translocation?

What about hypoxia and blood vessel issues?


....

 

[Hip]

You can easily connect it to almost every scientific finding that has popped up repeatedly over the last years in me/cfs.

Can you give some examples of scientific findings that apply both to EDS and ME/CFS?

hEDS prevalence is around 1 in every 5000 people (though some think it's more common), whereas ME/CFS prevalence is 1 in 500 people.

So there are 10 times the amount of ME/CFS patients compared to hEDS patients. So clearly hEDS cannot account for all ME/CFS, but may be a factor in some cases of ME/CFS.

You could even argue that you would probably (no data) find persistent Enteroviruses (if this turns out to be of value in me/cfs, I know this is your expertise) more often in EDS patients than in people without it. It is not difficult to see at all why this could be the case!

I've not heard anything about viral infections in hEDS. In ME/CFS its both enteroviruses and herpesviruses which are linked to this disease.

 

[bread.]

there is absolutely zero prevalences of any of these diseases that you cant trust- how would you? there is not even one consolidating opinion about what makes these diseases!

where exactly did you get your information from regarding these prevalences?

not every me/cfs patient does have eds, not every eds patient does have me/cfs, what does that say about two diseases with non sensical disease definitions and non existent funding and research (you think me/cfs has bad funding? think again and look at EDS)?



eds patients (in all forms) have a higher prevalence of auto immune disease than hc and many people not knowing that they have eds (falls mostly under heds later on) say that their illness started after some kind of infectious disease. what is the difference? PEM? What exactly is PEM again? EDS is one of the most fatiguing illnesses there is.

whether you have heds or me/cfs is sometimes completely up to what you find on google first and up to your own interpretation.

 

[Hip]

there is absolutely zero prevalences of any of these diseases that you cant trust- how would you? there is not even one consolidating opinion about what makes these diseases!

There are numerous studies which have investigated the prevalence of ME/CFS — studies which have been discussed in depth on these forums. The prevalence varies slightly from study to study, but the typical prevalence figure for ME/CFS is around 0.2%, or 1 in 500.

If you want to find info on hEDS prevalence, just Google search this: hypermobile EDS prevalence

whether you have heds or me/cfs is sometimes completely up to what you find on google first and up to your own interpretation.

That's true with many other diseases, as ME/CFS mimics lots of other conditions, including celiac disease, anemia, hypothyroid, lupus, hepatitis B, hepatitis C, growth hormone deficiency, CIRS (if you believe that is a disease), and lots of others.

People do get misdiagnosed with the wrong disease because of similarity of symptoms. Medical diagnosis is not easy in any disease, and initial misdiagnosis is common. Sometimes you have so see several specialists before you get the correct diagnosis.

 

[bread.]

I do not see what you are implying here at all.

What are you telling me here does not answer anything and only says that what I will find on google is automatically correct.

I assure you there are no correct prevalences in both of these diseases. How would this even be possible?

The EXACT reason for this not being possible is what you say in the following paragraph after you imply that I can find correct prevalences. How are they correct without any clear cut distinctions between diagnoses?

Do you really think any of these diseases you mentioned have comparable numbers for comorbidity and/or are as likely a culprit and/or prerequisite (that makes it at least more likely) to get me/cfs?

 

[Hip]

I do not see what you are implying here at all.

What are you telling me here does not answer anything and only says that what I will find on google is automatically correct.

What you find on Google of course is not automatically correct. You have to rely on authoritative sources, such as studies or systematic reviews published in high quality scientific journals. The prevalence figures I refer to come from such journals.

I assure you there are no correct prevalences in both of these diseases. How would this even be possible?

I am not assured by your opinion that there are no correct prevalence data for ME/CFS. Where are the facts and authoritative sources to support your view that the ME/CFS prevalence figures are not correct?

How are they correct without any clear cut distinctions between diagnoses?

There are clearcut distinctions, and a good doctor who gives you all the right tests can distinguish between ME/CFS and other diseases with similar symptoms.

Hypermobile EDS you cannot mistake for ME/CFS, because the former involves measurable joint hypermobility, whereas ME/CFS does not involve hypermobility.

 

[bread.]

uf.

What authoratives are you talking about?

I would be very much interested in that.

There are no clear cut distinctions, otherwise me/cfs would not be a diagnosis of exclusion.

How would one say anything like that?

What you consider me/cfs could be 100 diseases until proven otherwise, so what about 50 other things you can not prove yet?

You DO NOT have to be superflexoble to have hEDS.

 

[Hip]

What authoratives are you talking about?

Scientific journals.

There are no clear cut distinctions, otherwise me/cfs would not be a diagnosis of exclusion.

ME/CFS is not a diagnosis of exclusion. If you look at the Canadian consensus criteria, they contain very specific symptoms that you must have in order to be given the diagnosis of ME/CFS.

You DO NOT have to be superflexoble to have hEDS.

Yes you do. Here are the diagnostic criteria for hEDS. In order to be diagnosed, as a adult you have to have at least a 4 on the Beighton scale of joint flexibility. If you do not have such joint flexibility, you cannot be diagnosed with hEDS.

 

[Oliver3]

Scientific journals.





ME/CFS is not a diagnosis of exclusion. If you look at the Canadian consensus criteria, they contain very specific symptoms that you must have in order to be given the diagnosis of ME/CFS.





Yes you do. Here are the diagnostic criteria for hEDS. In order to be diagnosed, as a adult you have to have at least a 4 on the Beighton scale of joint flexibility. If you do not have such joint flexibility, you cannot be diagnosed with hEDS.

I'm pretty sure Jennifer Brea was identified as having EDS even though she scored zero on the Beighton scale. It's a pretty primitve way of diagnosing EDS. I feel there is definitely a correlation. After all both Dr Ron Davies and his daughter have EDS . I don't know about Whitney. It's been obvious to me for a long time that there was something wrong with my connective tissue. Thats got to have loads of downstream effects.
A friend of mine has heds. The symptoms are identical to CFS. He has dysautomnia, leaky gut, chairi malformation, ibs, mast cell degranulation, catelochimes etc ect..he has an anuerysm too..i thin CFS may be an undetected, unnamed form of EDS. It leads us vulnerable to loads of these health issues. Thats my gut feeling

 

[rel8ted]

I'm pretty sure Jennifer Brea was identified as having EDS

https://twitter.com/i/web/status/1035996271385792512

She does not.

 

[Foxglove]

I'm pretty sure Jennifer Brea was identified as having EDS even though she scored zero on the Beighton scale.

She was never diagnosed as having EDS, but being diagnosed with EDS or even hEDS without fulfilling Beighton (you'd still need to have some amount of score, not 0) is possible.

Beighton is just one aspect of how hEDS is diagnosed. The correct criteria before the 2017 criteria were called Brighton, and it is possible to get diagnosed without meeting Beighton, because other things are considered (family history, other hypermobile joints, personal history of hypermobility, pain, skin features, and so on).

It is not, however, possible to get diagnosed with hEDS without being majorly ill in ways that CFS would not, by itself, meet.

At least not unless the doctor doesn't know what they're doing, which is always possible regardless of what diagnosis is being discussed.

(ETA: under Brighton, it was possible to be diagnosed with hEDS without having any current hypermobility at all, but this has been changed under the 2017 criteria)

 

[Hip]

Beighton is just one aspect of how hEDS is diagnosed. The correct criteria before the 2017 criteria were called Brighton, and it is possible to get diagnosed without meeting Beighton, because other things are considered (family history, other hypermobile joints, personal history of hypermobility, pain, skin features, and so on).

Interesting, I did not know about these earlier criteria, and you are right, it is possible to get a hEDS diagnosis on the older Brighton hEDS criteria without having joint hypermobility. But in the new 2017 hEDS criteria, joint hypermobility is a prerequisite for diagnosis.

Of course, there are other forms of EDS, not just hEDS.

A friend of mine has heds. The symptoms are identical to CFS. He has dysautomnia, leaky gut, chairi malformation, ibs, mast cell degranulation, catelochimes etc ect..he has an anuerysm too..i thin CFS may be an undetected, unnamed form of EDS. It leads us vulnerable to loads of these health issues. Thats my gut feeling

EDS is characterized by certain genetic mutations, so if ME/CFS was an undetected form of EDS, those same mutations would have been detected in genetic studies on ME/CFS patients.

 

[Foxglove]

EDS is characterized by certain genetic mutations, so if ME/CFS was an undetected form of EDS, those same mutations would have been detected in genetic studies on ME/CFS patients.

I don't think the ME/CFS studies have been big enough. Genetics studies require very large studies, because they deal with a very large amount of data. The more data is being processed, the bigger the study needs to be.

Also since relatively few ME/CFS patients have these types of skin or joint problems, either the gene does not strongly influence the phenotype (requiring bigger studies), or it would apply only to a subset.

 

[Hip]

I don't think the ME/CFS studies have been big enough. Genetics studies require very large studies, because they deal with a very large amount of data. The more data is being processed, the bigger the study needs to be.

I would not have thought that would be the case if you are assuming the mutations are common. If you are assuming ME/CFS is a form of EDS, then you'd expect those EDS mutations in lots patients.

 

[Hip]

It's interesting though, and perhaps quite understandable, that the prevalence of hEDS among ME/CFS patients diagnosed positive for CCI or related conditions is high.

In my ongoing CCI Survey, as the results stand at present, it shows 32% of those diagnosed positive for CCI or related conditions have hEDS. And about the same amount again suspect they may have hEDS, but are not formally diagnosed. So that's over half either having hEDS or suspecting they have it.


By the way, if you have been tested for CCI, please do fill out my CCI survey (even if you were diagnosed negative — we particularly need people diagnosed negative to answer the survey).

 

[Sidny]

@Hip would you happen to know if there is any connection between vascular EDS and ME like diseases or CCI?

 

[Hip]

@Hip would you happen to know if there is any connection between vascular EDS and ME like diseases or CCI?

I don't know about vascular EDS, but a quick check on Google reveals its prevalence is estimated to be between 1 in 50,000 and 1 in 200,000 people. So pretty rare, and due to this rarity alone, you can exclude the possibility of it playing any significant role in the general ME/CFS population.