Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

[Allyson]

Daily Mail - Britain article on HMS

http://www.dailymail.co.uk/news/art...-bone-syndrome-meant-just-bounced-bonnet.html

 

[ukxmrv]

Hi Allyson,

I didn't really understand your response. Would you please condense down your arguments for not editing the thread heading into something shorter if possible?

Many thanks!

 

[Allyson]

@Vegan Monkey one more thing i forgot to add about the exercise

if you want to walk it is best to avid doig it straight after a meal

as that is when more blood is required in your abdomen to digest food so less available to spare for heart and brain.

cheers
I find a shor t push bike ride good and often manageable and logially that is better than walking i think though i know hard for some to manage.

 

[VeganMonkey]

Is morbus schamberg also EDS or POTS related? My mother got that.
(https://en.wikipedia.org/wiki/Schamberg_disease)

 

[ahimsa]

The thrust of my thinking here has been to ask people to re-consider ( ie think about - nothing more than that ) their ME symptoms and see if they could be caused by EDS.

Thanks for the clarification, Allyson.

If I understand you correctly, you think that EDS might be the cause of the symptoms in some ME patients, right? This is not a controversial statement. But it's a much different statement than EDS may be the cause of ME. Those two statements may sound similar but I think it's a very important distinction.

In past posts I mistakenly thought that you were saying that ME is caused by EDS. [And in one post I thought you were suggesting that standing was the cause when you wrote, "... has standing as the cause of ME been tested." This was in those early posts discussing mostly Orthostatic Intolerance (OI) issues.]

The way the word "cause" is used in some of these posts can be confusing. I don't think there is any scientific data supporting the statement that EDS causes ME. At least, I don't believe that there's a causal link in the way that we would say that HIV infection causes AIDS.

So, maybe it's all just been a confusion of terminology? And how different people use the word cause? I'm glad that you clarified the point and sorry for any earlier misunderstanding. It makes sense to say that EDS might cause some of the symptoms in ME patients (patient has co-morbid EDS). Or that EDS might be an alternative diagnosis in some cases (patient has EDS but not ME).

Providing additional information about EDS is quite helpful. I like learning more about it! Thank you for posting information about it.

But the thread title (Is ME due to Ehlers-Danlos Syndrome "stretchy veins"), and several of the posts, have sounded a bit like, "EDS is the root cause for all cases of ME and OI." That's a different statement than, "EDS is important, and it applies to a large subset of ME and OI patients, so you should definitely learn more about EDS in case it applies to you."

 

[ahimsa]

... this thread is meant to collect info about EDS. some people with ME/CFS have EDS so it's very helpful in my opinion.

Posting general information about EDS has only been part of this thread. Some the other posts have been a bit different. That's where it can get confusing.

Suggesting that ME patients should look into EDS to see whether it applies them (e.g., read more about it, go to their doctor, go to a genetic specialist) is a great thing! I appreciate getting more information about EDS.

I like reading posts with links to various EDS research studies and newsletters. And I like reading about personal experiences (e.g., "Due to my EDS diagnosis this <list of symptoms> is what happens to me and this <list of tips> is what helps me") that use I statements. These are completely non-controversial. (Although I notice that most of the "tips for dealing with EDS" are mostly a repeat of "tips for dealing with OI." These tips might fit better in the forum for POTS and OI issues since many of them apply to cases of OI that are not caused by EDS)

But in some posts it has been suggested (perhaps accidentally due to confusing use of the word cause?) that EDS causes ME (all cases of ME, not just those cases of EDS that have been misdiagnosed accidentally as ME). The thread's title (Is ME due to Ehlers-Danlos Syndrome "stretchy veins") simply adds to this confusion.

Saying or implying that EDS causes ME is the part of this thread (in my opinion) that is causing the confusion and controversy.

 

[Misfit Toy]

Someone told me to look into EDS. So, here I am. I am open to looking into it. Personally, I am over CFS. Over the diagnosis. More importantly, over the fact that there is no end to it, or the fact that it really doesn't make sense. Why are some people on deaths door and others, like myself, able to get out? I am not saying CFS doesn't exist, but WHAT is it? For 24 years, I have read book after book and I am still in the dark at 42 just like I was at age 18. I hate the diagnosis. I've had so many doctors say it's a wastebasket diagnosis; when all else fails, diagnose the patient with CFS. I concur to an extent.

I've had everything under the sun with this disease. Endometriosis, interstitial Cystitis and fibromyalgia. Many don't have that. Maybe there are different spectrums of CFS.

I don't have hyper mobility. Nope. My ham strings are so tight. But why couldn't people with CFS have EDS?

A big beef I have though with the diagnosis is, what's the treatment? So, you go to a doc, get a diagnosis, but now what?

I am tired of diagnoseses, I want a TREATMENT that works. I have been over diagnosed and under treated. Told, "hey...this is what you have." Great. Now what?

 

[Valentijn]

I am tired of diagnoseses, I want a TREATMENT that works. I have been over diagnosed and under treated. Told, "hey...this is what you have." Great. Now what?

Pacing!

But yeah ... ME/CFS = WTF?

 

[Misfit Toy]

Pacing works only to some degree. If you want to live in a box. I have spent many times laying low, living alone, avoiding stressful situations and not doing much and you know what happens? I become depressed, which is awful.

Even my "good days" are never that good. Why is that? I am usually alone when having them or I pay for them dearly. That ruins my memory of the "good day."

 

[VeganMonkey]

For a long time I have believed that ME/CFS is maybe a whole collection of different not yet discovered illnesses with similar symptoms and I still believe that. Some people got ill after a viral infection, others slowly over time, some have it running in the family. But we all got very similar symptoms. Maybe some of us have EDS, others might have Lyme's and yet others have something viral or something altogether different which hasn't been discovered yet. I find it very interesting to look into all the options. I have been tested for Lyme's many times as that's one of the first they look into when you get ill like this in Holland, but I never had it (I got my first symptoms 32 years ago). I could have contracted it in the meantime so will still get it tested to be sure.

 

[ukxmrv]

That might be because you are adding CFS to the ME, Vegan Monkey. The heading is "ME" and that has a history as an epidemic disease.

I can't see you get much of an argument from stating that the various CFS criteria can produce a patient selection with a variety of different possible causes. That's one of the reasons ME patients did not agree with the first CFS criteria.

ME epidemics cannot be caused by EDS as it does not produce epidemics of neurological symptoms or viral symptoms like the Royal Free outbreak.

One of the reasons why this thread goes around in circles as people do not refer to criteria. ME appears to be used to describe CFS or CF or F. That's why I asked for the thread to be renamed.

 

[VeganMonkey]

ukxmrv, you think ME/CFS is caused by a virus? You mean like Lyme's disease? Or something else? A lot of people with ME/CFS have been recently diagnosed with Lyme's. I have been tested many times (I got slowly ill 32 years ago) and that was always the first they tested for in the country where I'm from. But never had it. I'm the 4th generation in my family with Me/CFS, so how if it is a virus would I have inherited it? Would that mean that all women who have this illness infect their baby in utero? But in my family it went from mother to son, from son to daughter and that daughter is my mother and I got it as well, so would it be transmittable by sperm as well? I'm just wondering how it would work if it's a virus.
My ME/CFS specialist (he's a famous and respected doctor in this country) thinks it's not a virus but could be multiple things: IBS, leaky gut, fibromyalgia, Lyme's or EDS. according to him it's not always caused by the same thing. I think it's good to look into all possible directions we can so we can get better!

Btw the retro virus they thought was responsible (that article was published 3 years ago) has been debunked.

 

[Valentijn]

ukxmrv, you think ME/CFS is caused by a virus? You mean like Lyme's disease? Or something else? A lot of people with ME/CFS have been recently diagnosed with Lyme's. I have been tested many times (I got slowly ill 32 years ago) and that was always the first they tested for in the country where I'm from. But never had it.

Lyme is a bacterial infection, not viral.

I'm the 4th generation in my family with Me/CFS, so how if it is a virus would I have inherited it? Would that mean that all women who have this illness infect their baby in utero? But in my family it went from mother to son, from son to daughter and that daughter is my mother and I got it as well, so would it be transmittable by sperm as well? I'm just wondering how it would work if it's a virus.

An actual infection might be transmitted between family members or they might share the source of exposure if it's not a virus. But a genetic factor simply means that there is a predisposition for the body to react to a certain virus in a certain way. This is how people end up with Type I Diabetes (known to be triggered by a virus) - they have a predisposition, they get the virus, and they end with an autoimmune disease. Close family members have similar genes, so they risk having the same reaction to the virus - and these are typically very common viruses, so odds are everyone in the family will get it eventually.

My ME/CFS specialist (he's a famous and respected doctor in this country) thinks it's not a virus but could be multiple things: IBS, leaky gut, fibromyalgia, Lyme's or EDS. according to him it's not always caused by the same thing. I think it's good to look into all possible directions we can so we can get better!

Why exclude viruses from the list of "multiple things" it might be? Is he not prepared to test for and treat viral infections? This would be very unfortunate since 1) some viruses and other infections are recognized as causing a percentage of people to end with ME/CFS and 2) ME/CFS patients end up with a variety of chronic infections.

Btw the retro virus they thought was responsible (that article was published 3 years ago) has been debunked.

XMRV is not the only retrovirus, and retroviruses are not the only types of viruses, and viruses are not the only types of infections. Previous XMRV results being shown to be contamination does not mean that all retroviruses, viruses, and infections have been disproven in any manner - in fact, the research indicates the opposite.

EDS might create a susceptibility to developing ME/CFS, but it's simply not possible that EDS causes ME by itself, or that EDS is ME.

 

[Allyson]

ukxmrv, you think ME/CFS is caused by a virus? You mean like Lyme's disease? Or something else? A lot of people with ME/CFS have been recently diagnosed with Lyme's. I have been tested many times (I got slowly ill 32 years ago) and that was always the first they tested for in the country where I'm from. But never had it. I'm the 4th generation in my family with Me/CFS, so how if it is a virus would I have inherited it? Would that mean that all women who have this illness infect their baby in utero? But in my family it went from mother to son, from son to daughter and that daughter is my mother and I got it as well, so would it be transmittable by sperm as well? I'm just wondering how it would work if it's a virus.
My ME/CFS specialist (he's a famous and respected doctor in this country) thinks it's not a virus but could be multiple things: IBS, leaky gut, fibromyalgia, Lyme's or EDS. according to him it's not always caused by the same thing. I think it's good to look into all possible directions we can so we can get better!

Btw the retro virus they thought was responsible (that article was published 3 years ago) has been debunked.

Yes good point Vegan Monkey
ALso the anmein of ME /cfs whatever ... is a long and complex one and not really our responsibility in thes thread
Perhaps you coud start nother thread just on that would be more appropriate as every o has to call it something

Likewise for Viral theory - it has had ?20 years or so of work and it has not panned out - or I have not seen any one cured or helped by it as they are for HIV in the same time frame -

Also feel free to start your own thread to discsuss it - i have insufficient knowedge or information to add to htat discussion except to repeat for the final time that
1 my illness di not start with a virus nor did that of millios of others and

2 Even if it did seem to start at the same time as a viral illness tht does not mean the virus caused the ME/ cfs -

People who live longer have more birthdays but that does not mean birthdays are good for your health.

ie a co-incidental relationship is not necessarily causal.

thanks and if you dont want a circular discussion X then please don t repeat the same points over and over- move on or move over - to another thread of your own.

 

[VeganMonkey]

Not sure if this one has been posted yet, but it looks useful. It explains my eye and cornea problems (and loads of other things):

http://www.ednf.org/index.php?option=com_content&task=view&id=1777&Itemid=88889120

 

[VeganMonkey]

Why exclude viruses from the list of "multiple things" it might be? Is he not prepared to test for and treat viral infections? This would be very unfortunate since 1) some viruses and other infections are recognized as causing a percentage of people to end with ME/CFS and 2) ME/CFS patients end up with a variety of chronic infections.

He does look into those things as well. He's just very broad minded about it. Not narrow minded as some doctors I have been to in the past (some of those were very medicine pushing, one of them is famous in CFS circles and I think he's on this forum too so won't name him)

 

[Misfit Toy]

I just have a question, Allyson, and I am by no means starting anything here; but you have EDS. So, why are you on here? Do you have CFS, too? Isn't the symptomology similar and why be on PR? You know many on here are going to stick to having CFS. They have had it for years. Everyone believes they have what they have. So many here are going to debunk EDS just for that reason on here. It may not resonate with them.

It might really bother them because they feel that they know what they have already. Clearly, not everyone will have EDS. I respect your bringing it to the surface. It's something to look into.

I completely think it's a good idea to keep searching with this thing. One never knows. Especially if they are so so sick. Keep looking and hoping and take breaks from anything health related, if at all possible, too. It's so exhausting.

 

[VeganMonkey]

1 my illness di not start with a virus nor did that of millios of others and

Same for me and my family members, we all got gradually worse over time, there was no sudden start. Sadly only two of us are still alive so we can't get the other two tested. But my mother has had countless tests and viral infection was ruled out (I mentioned her illnesses in an earlier post)

 

[VeganMonkey]

The Spitfire, I don't think she means that everybody here has EDS, but just giving info because maybe some people do have it. I'm all up for being informed, I read about all the other ideas and theories as well. I am getting tested for EDS tomorrow and later this month. If I have it I could still have CFS on top of it, it is all possible. So I will stay on here.

 

[Allyson]

I just have a question, Allyson, and I am by no means starting anything here; but you have EDS. So, why are you on here? Do you have CFS, too? Isn't the symptomology similar and why be on PR? You know many on here are going to stick to having CFS. They have had it for years. Everyone believes they have what they have. So many here are going to debunk EDS just for that reason on here. It may not resonate with them.

It might really bother them because they feel that they know what they have already. Clearly, not everyone will have EDS. I respect your bringing it to the surface. It's something to look into.

I completely think it's a good idea to keep searching with this thing. One never knows. Especially if they are so so sick. Keep looking and hoping and take breaks from anything health related, if at all possible, too. It's so exhausting.

thanks Spitfire - more soon but wanted to post this as it is basic but good - nice nad clear POTs is a symptom of EDS and ME and Lyme