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

[Foxglove]

the entire US gymnastic team is hypermobile and yet unaffected

As best as scientists can tell right now, Hypermobility is a trait like long arms or being tall or short. It might not bother a person.

Or it might be combined with symptoms so that it does.

If score every point on Beighton hypermobility score and have no other EDS features and do not have pain or symptoms, you do not get an EDS diagnosis. You're just hypermobile.

It's only EDS when there are bothersome symptoms and other traits like skin changes.

My feeling is that its a collagenbased problem from the start and cfs is under that umbrella.

It's perfectly fair for you to say that this is what you think your disease is. But many ME/cfs patients don't have skin changes or any hypermobile joints and so on.

And some of the things you referenced could go with autoimmune disease or other sorts of things, not only collagen disease. (i.e. There's multiple types of sets ME/cfs could plausibly fit into.)

So the generalization bit is hard for me. A collagen disorder probably doesn't apply to any big set of ME/cfs people as far as I can determine (but most are undiagnosed so I could be wrong!)

There could certainly be some set. That's an interesting thing to look at.

 

[Foxglove]

In various very informal and admittedly biased social media polls, roughly 80% of hEDS patients who looked at the ICC criteria responded that they met them.

Well, there's a thing called differential diagnosis. There's a lot of symptoms that could go with many different diseases like EDS, Lupus, multiple sclerosis, ME, and so on.

So we can't diagnose solely by lists of symptoms. We have to pick something that's the best fit, even if some of the criteria are clinical criteria and lack a diagnostic test.

If you know you have one of these diseaeses, then you need a good reason to add one (or add a second one) that doesn't have a diagnostic test.

I think it's totally possible to have both ME and EDS (even an EDS without a test), but there needs to be a good reason why a given patient would be given both diagnoses (that is, the patient has features of each that are not explained by the other diagnosis).

 

[Foxglove]

They should be attending EDS conferences or doing EDS CMEs.

And what about people, like me, in that other 50%, who do not have hEDS by any definition but have all of its cousins?

They should, I agree. And EDS physicians should be attending ME conferences and doing ME CME's, too.

 

[JenB]

Right. But right now there is absolutely no way to “differentiate” between ME and hEDS for people who meet both criteria, especially since they are not considered mutually exclusive. We don’t yet understand enough about either disease to even say that “the patient has features of each that are not explained by the other.” What is clear is that a lot of people with hEDS have PEM.

 

[JenB]

They should, I agree. And EDS physicians should be attending ME conferences and doing ME CME's, too.

Yup

 

[JenB]

As best as scientists can tell right now, Hypermobility is a trait like long arms or being tall or short. It might not bother a person.

Or it might be combined with symptoms so that it does.

If score every point on Beighton hypermobility score and have no other EDS features and do not have pain or symptoms, you do not get an EDS diagnosis. You're just hypermobile.

It's only EDS when there are bothersome symptoms and other traits like skin changes.


It's perfectly fair for you to say that this is what you think your disease is. But many ME/cfs patients don't have skin changes or any hypermobile joints and so on.

And some of the things you referenced could go with autoimmune disease or other sorts of things, not only collagen disease. (i.e. There's multiple types of sets ME/cfs could plausibly fit into.)

So the generalization bit is hard for me. A collagen disorder probably doesn't apply to any big set of ME/cfs people as far as I can determine (but most are undiagnosed so I could be wrong!)

There could certainly be some set. That's an interesting thing to look at.

Except that it is (probably) true that a majority of patients report post-onset connective tissue changes (to be confirmed) and then there is also the hydroxyproline findings. It’s an emerging area of research, one I hope is further invested in.

 

[Foxglove]

Right. But right now there is absolutely no way to “differentiate” between ME and hEDS for people who meet both criteria, especially since they are not considered mutually exclusive. We don’t yet understand enough about either disease to even say that “the patient has features of each that are not explained by the other.” What is clear is that a lot of people with hEDS have PEM.

What do they mean by PEM? Is it precisely the same or merely similar?

Does hEDS explain low NKCC? sore throats only after activity? EDS people are meant to be able to exercise and gain and maintain strength. How do you explain the exercise intolerance and exercise causing weakness instead of improving joint stability?

How does ME/CFS explain skin changes, joint popping, etc?

 

[Hip]

The criteria you mention are not biomarkers therefore by definition are not rigorous.

It's not really correct to say that only biomarker-defined diseases are rigorously defined. Shingles for example is usually diagnosed by symptoms alone, and because of the characteristic appearance of the shingles rash, this is an accurate way of diagnosing this condition.

And biomarkers are not some perfect system of disease diagnosis. For example, ANA is a biomarker for lupus, and 98% of those with lupus have a positive ANA. But in 2% of lupus cases the ANA is negative.

 

[Foxglove]

Except that it is (probably) true that a majority of patients report post-onset connective tissue changes (to be confirmed) and then there is also the hydroxyproline findings. It’s an emerging area of research, one I hope is further invested in.

Can you link what you mean by hydroxyproline findings? Is it replicated?

I know a few patients who report having skin and joint issues and many who report none. It's probable that you or some doctor could find a larger sample than people I personally can talk to, but you sound like you're talking about unreplicated findings. Very interesting, I agree, and exciting because it seems like it's a new avenue, and I always like new avenues--try something new and maybe you learn something new.

They still have to account for the people who report none even if they work out to be a minority in the end.

I mean, I'm in the ME+EDS group so ME+EDS or some new hybrid is good for me, but there are others who have nothing like any EDS or CII stuff.

I'm going to have to go nap now, but this is very interesting. Thanks.

 

[Foxglove]

For example, ANA is a biomarker for lupus, and 98% of those with lupus have a positive ANA. But in 2% of lupus cases the ANA is negative.

Lupus now has ds-DNA which is considered much more precise, but Lupus was a clinical diagnosis for years (as ANA can also go with other diseaese, like RA).

But doctors continue to argue about testing for rheumatic diseases if they have excluded people unnecessarily or if they got it right.

 

[Hip]

But right now there is absolutely no way to “differentiate” between ME and hEDS for people who meet both criteria, especially since they are not considered mutually exclusive.

Isn't the age of onset enough to differentiate though?

I understand that hEDS symptoms are present in childhood. Whereas ME/CFS is something that only appears at a particular point in your life, usually triggered by viral infection, before which you were healthy.


I think it is of great interest when two diseases manifest very similar symptoms, and worthy of full investigation, because if the symptoms are the similar, it's possible there may be shared pathophysiology.

However, I don't think there is any reason to assume that ME/CFS and hEDS are the same disease, just as there is no reason to assume that ME/CFS and celiac are the same, in spite of the fact that people with celiac are sometimes misdiagnosed with ME/CFS.

 

[JenB]

Isn't the age of onset enough to differentiate though?

I understand that hEDS symptoms are present in childhood. Whereas ME/CFS is something that only appears at a particular point in your life, usually triggered by viral infection, before which you were healthy.

It’s definitely not as clear-cut as that. Some of it is the fuzziness around the hEDS diagnosis. There are plenty of people who have generalized joint hypermobility and no debilitating symptoms until they get a virus or other trauma and then start dislocating, and develop POTS, and then PEM. That’s a common story, as well as many presumed “de novo” cases of hEDS w/o family history. I’ve started engaging with PWhEDS about this and it’s clear there is no agreement about this among patients (which means clinicians also differ). Many people who don’t meet hEDS criteria say they have it b/c they have other features, etc. I don’t think anything is going to be clear until a gene or genes are found, and even then, it is unlikely to account for everyone in that diagnostic category.

And no, they are definitely not “the same disease.” They are each on their own probably a collection of many different conditions/subtypes. But right now, ME is diagnosed based on symptoms and history, which overlap substantially with many people who have hEDS, so here we are.

 

[JenB]

Can you link what you mean by hydroxyproline findings? Is it replicated?

Naviaux (published) + Severely ill patient study (unpublished)
https://www.me-pedia.org/wiki/Hydroxyproline

There’s a third researcher who said his published metabolomics findings had implications for collagen. More to come on that.

If 50% of patients truly meet hEDS criteria, then of course these results would be confounded, unless they were found in both ME patients who do and do not meet hEDS criteria. No one has been designing their studies to ask that question, so no one knows.

I know a few patients who report having skin and joint issues and many who report none

I did two online polls and got about 60-80% of people saying “yes” they had post-onset changes.

 

[JenB]

What do they mean by PEM? Is it precisely the same or merely similar?

Does hEDS explain low NKCC? sore throats only after activity? EDS people are meant to be able to exercise and gain and maintain strength. How do you explain the exercise intolerance and exercise causing weakness instead of improving joint stability?

How does ME/CFS explain skin changes, joint popping, etc?

The folks I have talked to mean PEM. Not all people w/ hEDS have PEM, though. I/we have no idea how common it is among people w/ hEDS diagnoses.

What I don’t know about is muscle fatigability, as that’s not in the ICC...but at least in my case, I believe it was caused by neural strain due to CCI and tethered cord. Worth finding out how generalizable that is.

hEDS doesn’t per se explain any of this anymore than POTS or MCAS does. However, as all the symptoms of ME can be caused by CCI and cervical stenosis, the former of which is associated with hEDS. That could be one explanation for the overlapping symptoms.

 

[JenB]

And yes, ME/CFS can explain CT changes (more than skin) in anyone who has a) sudden onset changes and b) sudden onset MCAS. At least, I think that’s plausible. I’m sure you’ve already seen this, but: https://www.me-pedia.org/wiki/Collagen

At any rate, I’ve got to duck out. There are a lot of discussions like these happening on social media/Twitter and most of my thoughts have already been laid out on Medium. More to come, though. Thanks for starting the thread @bread.

 

[bread.]

I understand that you and @bread. have a personal theory that ME/CFS is really EDS. However, you have not provided any significant evidence or theoretical justification for your theory. So it's hard to discuss you opinions anyway, because there is very little substance to them that can be discussed.

You also have personal views on the inadequacy of diagnostic criteria of ME/CFS and EDS, and you believe that because of this claimed inadequacy, it is not possible to distinguish these two diseases. But again you have not provided any evidence to support your statement (in terms of references to studies or other medical literature).


Now, if you presented some interesting ideas or evidence that can link ME/CFS and EDS, then I am all ears. But so far, all I have heard is opinions without supporting evidence.

I am not saying EDS is automatically ME/CFS!

 

[bread.]

In various very informal and admittedly biased social media polls, roughly 80% of hEDS patients who looked at the ICC criteria responded that they met them.

That is the point. Thank you Jen. All these diagnoses are „diagnostic boxes“ made up by human beings that only observe patterns, that is incredibly prone to error and bias by nature (there is no way around it!), therefor there is a great need for biomarkers - until then it is just educated guesswork whether you have me/cfs, you can diagnose yourself with it or can be diagnosed with it by someone but it means and changed little, it is too vague.

We need tests and biopsies like for say SmallFiberNeuropathy, why should a somewhat similiar testing like this not be possible for collagene structures?

I am sure there a reasons why there are no testings like for SFNP but maybe it is just a lack of funding?

I am not well enough to find out but well enough to make others aware of this thoughts, that is the potential I, we all have, I d like to believe it is not for nothing, everything ripples until change happens!

Also ,THE main symptom that could really be the core of me/cfs and could actually be me/cfs is PEM, and yes, many eds people say they have it, but it is even more complicated than that, it seems to have a different quality to it, but again this is only guesswork, we need markers!

We need people that think OUTSIDE old made up boxes.

I think many people struggle with that easily identifyable issue because me/cfs is part of their identity and they fought for it, and I totally get it, it is for me too.



For me at this point in time with all the available information it boils down to this:

ME/CFS = All the people who suffer from the necessary criteria and symptoms to have ME/CFS - (minus) All the people who suffer from the necesarry criteria and symptoms to have ME/CFS but have a biomarker that tells them otherwise.

Which is clear but most people it seems to me do not understand what this means if a long enough time axis is provided for further research, there are many possible outcones to this, but 2 main outcomes:

1. there is no ME/CFS and all the people with me/cfs have something else that will be possible to discern in the future

2. there is a core disease that makes ME/CFS, and everything else flourishes and/or is on top of each other and works synergistically in a way (people can have multiple diseases at once)


I want to add that is very unlikely though, at least for me (NO STUDY TO BACK IT UP) that EDS is just a comorbidity in that cases that seem to have EDS even without a formal diagnosis. If you ask me personally, I think EDS and ME/CFS „work“ on similar pathways. So I tend to lean to point 2.

 

[valentinelynx]

It seems some didn't read the entirety of my last post in this thread, regarding the overlap in ME/CFS and hEDS. The point was there is NO OVERLAP in diagnostic criteria. EDS (and not just hEDS) may be a precursor to ME/CFS but it's not possible to say they are the same thing. I will repeat that part of my post below. Another point I made that seems to have been overlooked is that the Beighton scale is only a part of the diagnostic criteria for hEDS. Just scoring 6/9 of the Beighton does not make a hEDS diagnosis. Here's a link to that diagnostic algorithm: "Diagnostic Criteria for Hypermobile Ehlers-Danlos Syndrome (hEDS)". Plus the Beighton scale has details in its application that make it more specific than the sloppy way it's often done.

And very important to this discussion is the following caveat to consider when diagnosing hEDS [Italics mine]:​

​

"There is a range of conditions which can accompany hEDS, although there is not enough data for them to become diagnostic criteria. While they’re associated with hEDS, they’re not proven to be the result of hEDS and they’re not specific enough to be criteria for diagnosis. Some of these include sleep disturbance, fatigue, postural orthostatic tachycardia, functional gastrointestinal disorders, dysautonomia, anxiety, and depression. These conditions may be more debilitating the joint symptoms; they often impair daily life, and they should be considered and treated." (from here)​

​

So, people with hEDS may have many symptoms that overlap with those of ME/CFS, but those symptoms are neither necessary or sufficient for a hEDS diagnosis, while they are essential to an ME/CFS diagnosis (depending on which criteria is used this could include e.g. fatigue, sleep disturbance, orthostatic intolerance, GI disorders, and cognitive problems). Here's an excellent resource for the 5 diagnostic criteria for ME/CFS used in research: Open Medicine Foundation: Diagnosis of ME/CFS.​

 

[Oliver3]

It seems some didn't read the entirety of my last post in this thread, regarding the overlap in ME/CFS and hEDS. The point was there is NO OVERLAP in diagnostic criteria. EDS (and not just hEDS) may be a precursor to ME/CFS but it's not possible to say they are the same thing. I will repeat that part of my post below. Another point I made that seems to have been overlooked is that the Beighton scale is only a part of the diagnostic criteria for hEDS. Just scoring 6/9 of the Beighton does not make a hEDS diagnosis. Here's a link to that diagnostic algorithm: "Diagnostic Criteria for Hypermobile Ehlers-Danlos Syndrome (hEDS)". Plus the Beighton scale has details in its application that make it more specific than the sloppy way it's often done.

And very important to this discussion is the following caveat to consider when diagnosing hEDS [Italics mine]:​

​

"There is a range of conditions which can accompany hEDS, although there is not enough data for them to become diagnostic criteria. While they’re associated with hEDS, they’re not proven to be the result of hEDS and they’re not specific enough to be criteria for diagnosis. Some of these include sleep disturbance, fatigue, postural orthostatic tachycardia, functional gastrointestinal disorders, dysautonomia, anxiety, and depression. These conditions may be more debilitating the joint symptoms; they often impair daily life, and they should be considered and treated." (from here)​

​

So, people with hEDS may have many symptoms that overlap with those of ME/CFS, but those symptoms are neither necessary or sufficient for a hEDS diagnosis, while they are essential to an ME/CFS diagnosis (depending on which criteria is used this could include e.g. fatigue, sleep disturbance, orthostatic intolerance, GI disorders, and cognitive problems). Here's an excellent resource for the 5 diagnostic criteria for ME/CFS used in research: Open Medicine Foundation: Diagnosis of ME/CFS.​

Nope i understood. My point is they are the same disease but different expressions on the phenotype, therefore cfs is a form of EDS. beighton score cannot pick up these differences. As i said before, breats cancer was once just one illness.
I actually don't want CFS to be EDS ..i want an easy answer..It is with some horror i think it might be a new form of EDS

 

[JES]

Nope i understood. My point is they are the same disease but different expressions on the phenotype, therefore cfs is a form of EDS. beighton score cannot pick up these differences. As i said before, breats cancer was once just one illness.
I actually don't want CFS to be EDS ..i want an easy answer..It is with some horror i think it might be a new form of EDS

But if they are the same disease, how would this EDS develop overnight like ME/CFS does for many of us? I didn't develop sudden onset symptoms, but many people have been perfectly healthy and then one day woke up with what turned out to be ME/CFS after catching some infection. It doesn't make sense to me.