Is it correct to say ME is really EDS ?

[gregf]

Hi.

In another internet M.E. place, someone has a point of view that M.E. is just a form of E.D.S.
and that E.D.S. has replaced M.E.

The problem is that the person is posting large amounts of information about EDS
in the M.E. section, and this is leaving the M.E. people there, overwhelmed and confused.
While there is some overlap, much of the E.D.S. information, does not appear to be the same disease.

Has ME been superseded by EDS while I was not watching ?

Or is EDS just a related disorder like FM ?

Thanks in advance.

-Greg.

 

[Undisclosed]

No. ME is ME. EDS is EDS. They are separate diagnoses even though one can have both and I think there are a few that get misdiagnosed due to doctors not running genetic tests to rule out EDS which symptom-wise can be similar to ME.

Have you contacted the moderators at the site you are talking about to complain @gregf because it does seem like this person is hijacking the forum for their own agenda.

 

[dan062]

Agree with @Kina

I think the only variant of EDS without the hyper-motility (which, of course, is a very obvious and distinctive finding for EDS) is type iv (vascular), which is both extremely rare (1 in 100,000 - 250,000) and characterized by its own distinctive facial appearance and unique sign (near translucent skin) which I'm sure a rheumatologist would clue in on.

That's almost a vasculitis (type iv), and per @Jonathan Edwards 's comments on this thread, there's a large gulf in severity between the two, even if it's likely that vascular damage has some role to play in CFS.

I do think these comparisons are useful to tease out the distinctions between what, on face value, can seem like very close mimics of CFS in a differential diagnosis.

 

[Snow Leopard]

Oh, I think I know what forum you are talking about. The forum is very quiet at the moment, unfortunately.

Yes, I think Ally is going a bit overboard.

 

[Valentijn]

If it's the aussie forum, it's suffered from bad moderation and poor policies for quite a while. Someone deleting their account also deletes all of their posts, for example, with bizarre and annoying results.

Hence I wouldn't take that forum seriously. It's also hosted by a journalist trying to sell his CFS book, and who had PVFS, or Fukuda CFS at best - definitely not CCC or ICC ME. As a result, there's not much science discussed there, though it does have a nice emotionally supportive atmosphere.

I left that forum after reading too many stories regarding GET and serious denial from ME patients and the mother of one ME patient who put him into an in-patient center at a local hospital. "It's not PEM, I just happened to come down the flu after starting GET! And then I felt worn out because it's fall! And then I felt worn out because it was a full moon!" Etc, etc.

Though the account of the mother with a sick son was by far the worst. I'm not easily traumatized, but reading about her son being unable to get to the bathroom and her being forbidden to help him was truly awful. Followed by them crying and praying while he was in agony, then eventually being able to get to the bathroom by himself. Praise Jebus and praise the quacks!

 

[Esther12]

We have one long thread on EDS and it's possible implications for patients diagnosed with CFS - that seems a sensible way of presenting this info.

 

[dan062]

See http://forums.phoenixrising.me/inde...-ehlers-danlos-syndrome-stretchy-veins.20351/

 

[Snowdrop]

If you go to the forum main page and scroll down there is a section for EDS in Alternative diagnoses here on PR.

 

[Sushi]

Has ME been superseded by EDS while I was not watching ?

Or is EDS just a related disorder like FM ?

EDS is a genetic disorder and some of the problems it causes overlap with some of the problems caused by ME. It is not the same thing though. I am one of those who have both. I was born with EDS but acquired ME much later in life.

Best,
Sushi

 

[Jonathan Edwards]

Yup, the form of 'EDS' said to be associated with long term pain is probably better called benign hypermobility syndrome. It is defined in terms of lax joints and is genetic. It is not very clear whether it makes you more likely to have pains in joints, although rheumatologists widely believe that (not necessarily a recommendation). It is definitely not the same thing as ME.

 

[NilaJones]

Yup, the form of 'EDS' said to be associated with long term pain is probably better called benign hypermobility syndrome. It is defined in terms of lax joints and is genetic. It is not very clear whether it makes you more likely to have pains in joints, although rheumatologists widely believe that (not necessarily a recommendation). It is definitely not the same thing as ME.

People with EDS are trying to get away from the 'benign' label in the same way that people with CFS are trying to get away from the 'yuppie flu' label .

Some people have a mild form of EDS that does not cause a lot of pain. But many have daily dislocations of major joints -- with the expected severe pain. And those who do not get full dislocations often have dozens of unhealed sprains, pulls, subluxations, etc. These hurt us just like they would hurt a 'normal' person.

 

[melamine]

One of the conditions associated with at least some forms of EDS is said to be chronic cerebrovenous insufficiency (CCVI), which is also being studied, rather controversially, as a source of MS by a few doctors. Wiki article http://en.wikipedia.org/wiki/Ehlers–Danlos_syndrome mentions the confusion with "CFS" that often arises in diagnosing EDS, which has many variants. There are mild manifestations in many members of my family on both sides, but not enough to generate a Dx. Most doctors are not aware of the many different kinds of symptoms that can accompany the disease. Hearing loss, for instance.

 

[ukxmrv]

It's not "just" the one Aussie forum that the one person has been posting to. she comes up on some of the ME and CFS Facebook pages with the same ideas. My suspicion is that as moderators block her she'll just go somewhere else.

 

[gregf]

Thank you very much everyone. That helps me greatly.

-Greg.


For the record, in the other place, I have never seen anyone in favour of GET&CBT.

The patron is a newsreader only, not a personality, hardly participates in
the forum, and is the best public advocate we have here. Very respected.

Yes there has been no moderator for some time, so I am offering to help.

 

[VeganMonkey]

ME/CFS is caused by different things for different people, some have EDS, some have Lyme's, some have POTS, some have a viral infection etc. But a very large group does have EDS, so that's why it's discussed so much.
Btw that thread on Not Crazy you mentioned has 62,000 hits, so it must be interesting to people somehow.

 

[PattyPlum]

I personally believe that autonomic dysfunction causes the symptoms of ME/CFS. I know many things can trigger AD and for some it is EDS. If you compare symptom lists for ME/CFS and AD, they are pretty much identical. I have had 'ME' for 31 years and it was only 8 years ago when everything got much worse and I developed POTS and since then I have been also diagnosed with EDS. I think there are many people with EDS or POTS and they don't know. I discounted both until I looked into them further and realised that I might have them.

Chronic Fatigue is part of having problems with your nervous system and it affects the whole body. I jut wish I had been diagnosed years ago.

 

[Valentijn]

I personally believe that autonomic dysfunction causes the symptoms of ME/CFS. I know many things can trigger AD and for some it is EDS. If you compare symptom lists for ME/CFS and AD, they are pretty much identical.

Actually they are not pretty much identical. A valid ME/CFS diagnosis must include post-exertional malaise, which is quite a bit different from the exercise intolerance sometimes seen with autonomic dysfunction.

 

[PattyPlum]

I get both exercise intolerance and post exertional malaise and thats fully understandable with autonomic dysfunction. Years ago the symptom list for ME was pretty sketchy when it comes to nervous system related symptoms. I think back to my being a member of a few of the UK charities back then. Now more and more features of autonomic dysfunction are mentioned including neuropathic pain, HR and BP problems, digestive issues/IBS, poor temperature control, exercise intolerance and post exertional malaise, muscle and joint pain, extreme fatigue, vision problems and so on.

I may be wrong, but then again I may be right. Time will tell. Not many years ago EDS and POTS were not mentioned in relation to ME/CFS and now they are. There are links everywhere.

 

[Valentijn]

I get both exercise intolerance and post exertional malaise and thats fully understandable with autonomic dysfunction.

Could you cite to a source showing that PEM is present in autonomic dysfunction? My understanding is that it does not result in the delayed appearance or aggravation of immune symptoms (swollen lymph nodes, sore throat), nor discrete and protracted periods of neurological symptoms (ataxia, etc) triggered by exertion.

 

[justy]

I have EDS and M.E and MCAS and Lyme and co. I don't think the immune system symtpoms are because of the EDSIII and my rheumatologist agrees. On the other hand there is a great deal of overlap between these four issues and I am meeting more and more people who have them all. My M.E DR says 30% of their patients have EDS so it's a very common co morbidity with M.E.