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

[Sushi]

Allyson

If the last post was directed at me, I did tell you how I was diagnosed with EDS (check back to my post), and no, it was not based just on hypermobility and joint issues.

Sushi

 

[Allyson]

Just because one professor says they are one and the same doesn't mean they are. Look at the diagnostic criteria of both, they are not the same. Unfortunately, many people are misdiagnosed with ME. And usually that's down to a lazy doctor not digging deep enough, not doing the proper tests, not ruling things out. Most doctors, researchers would disagree that they are related.


Ally says _ Again i do not say they are - but i think he in in a better position than most - myself included - to make and informed and inteligent statement on this. Most doctors have not condsidered the link and i am afraid a blanket staement such as "Most doctors, researchers would disagree that they are related" .....is not really a valid argument in any argument.
The univeersity professor who is the source of this info is knowledgeable enough about ME that he was invited to speak at the ME/CFS Australia society conference last year - where he gave a brilliant paper.




So again, please explain how ME is a connective tissue disorder as there are hundreds of research papers that show it is not. In fact, ME has never been described as a connective tissue disorder.

ALly says - could you provide some refernces showing this please?
If you know of "hundreds " off the top of your head then providing one or two links to published peer reviewed papers should not be a problem.

the fact that it has never been described as a CTD is again hard ( likley impossible) to prove and even if it is true it does not prove that it is NOT a CTD.



The problem is, you can't just decide that EDS and ME are related because they share common symptoms. Can you say that because EDS has an effect throughout the body and is a connective tissue disorder that because ME has effect on the whole body it must be a connective disorder -- no you can't because that would make Cancer a connective disorder too.


Ally says - no i am not saying they are; I am saying a senior medical professional whos e opinion i respect says that and i think it is worth our while to examine ad consider his opinion rather then dismiss it out of hand.
I am also saying i can see the merit and logic in his opinon and after a year of so of research and consideration it is begiinnnnig to seem quite - in fact highly - plausible to me.
If we did not consider other otions thatn the many who thought they had ME /cfs but now realisse they have Lyne disease would never have found this out.

Many people with ME have had genetic tests to rule out other conditions. I have had genetic testing. It may well be true that ME has a genetic component but that doesn't mean it is related to EDS. Would you say trisomy23 (Down Syndrome) is related to EDS -- it's genetic too.

Ally says - no I meant genetic testing to establish or rule out ME /cfs as a diagnosis. i did not mean for other conditions.
Yes ME may have a gentic component, it may not, it may be related to EDS , it may not .... but at the moment we do not know these things. That is no reason not to consider them.

Enough research has been performed on ME to give it a clinical picture -- or things you must have to be diagnosed. EDS and ME have two completely different pictures.

ALly says -- Sadly not enough research has been done into EDS - I have read there are so far at least 10 different type and classifications varies and information is hard to come by outside of medical journals.
.
Often, sadly , only the hypermobility is considered and all the invisible symptoms get little to no attention. so some ywould say yu need to be hypermobile of you do not have EDS 3 - others disagree and say all the other symptoms are at least as indicative - eg POTS/OI, IBS, reflux, brain fog , muscle aches, interstitial cystitis , easy bruising and bleeding, migraines nausea and vomiting, arthritis and joint pain RSI TMJ, tinnitus and ear blockages, fequent muscle injuries and infections.


The number of hits just indicates how many people have looked at it. If each of the people posting on the thread read all the posts, the numbers increase quite rapidly. It is an interesting topic and I do believe most people with ME look at alternative diagnoses. I just don't believe other than sharing some common symptoms that the two are related. There are just too many glaring differences.

ALly--says -----
yes it is possible that the two may turn out to be not related ; to me there seem to be many glaring similarities. You may not believe it and it may not be right in the end ...but it is worth examining I am sure you agree. I think refined gentic testing may be the only eventual answer and i am heartened by the fact that the genticist i saw says that the speed of genetic research is increasing at an exponential rate so that may be sooner that we think - he said 2- 3 years away for EDS. If there is a genetic component to ME then epigentic research and treatment may hold some hope for us - the only real hope i can foresee..


I have still never seen andother plausibe reaon for why we have good - totally normal times and days when other times we are soill and as this theroy explains it to my complete satisfaction...however it is also one thing that is EASLY tested by research ... a very simple and inexpensive research study could test this and throw light on this issue and i would like to see someone attemtp that.

thanks again for all your thoughtful feedback, it is really appreciaited


best,
Ally

ps i could ot think of t quick way to answer your segments so hope it is clear - i have written "Ally----" before all my answers

 

[dannybex]

ALly-------
I have stil never seen andother plausibe reaon for why we have good - ttally normal times and days when other times we are soill and as this theroy expains it to my complete satisfaction...hoewver it is also one thing that is EASLY teste by research ... a very simple and inexpensive researxh study coue test this an stte the questionaso i would like to see someone attemtp that.

Hi Allyson,

It's a little difficult to decipher this last paragraph, but I personally don't know of anyone with ME/CFS who has "totally normal times"...and also how the EDS theory explains it to your satisfaction. With connective tissue disorders like EDS, perhaps it's possible to have some times where one feels "totally" normal, but not with ME/CFS. But again, that perhaps depends on your definition of 'normal times'. If you mean a few hours on certain days, then I would agree that some of us can feel at least almost normal...but just for a few minutes to maybe a few hours.

I do believe there is a subset of ME/CFS patients who also have some degree of EDS or other connective tissue problems, but I don't feel ME is "due to EDS", nor that EDS is caused by genetic abnormalities.

But we can all agree to disagree.

 

[Valentijn]

yes the number was pointed out to me byy someon woho thought it may be a site record Sushi

Not even close, I'm afraid. The biggest and most read thread I know of would be at http://forums.phoenixrising.me/index.php?threads/pace-trial-and-pace-trial-protocol.3928/ . Over 2000 posts and over 100,000 views.

Keep in mind that every time you or anyone else even looks at the thread, it counts as a view ... so it really doesn't mean much. In certain subforums I tend to click on each thread, even if I don't read it, care about it, or agree with it. It's simply a nice way for me to change the color of the icon for that subforum so I can tell with a glance if there's any new posts.

 

[Allyson]

Hi Allyson,



I do believe there is a subset of ME/CFS patients who also have some degree of EDS or other connective tissue problems, but I don't feel ME is "due to EDS", nor that EDS is caused by genetic abnormalities.

But we can all agree to disagree.

thanks Danny - j would have thought that was universal for PWME but i may be wrong - about once every month or 2 i wake up and feel active energetic and "normal"

i make palns for the day and sometimes start doing things - a CFS speicalist told me this was normal for the condition and the problem was not to do too much at times like this - which is of course what i aalways do - you have so much to catch up on - and crash as a result.

i have also seen lots of posts by people saying just that
but i may have it wrong.

Also most or many evenings i have and hour or so when i can do stuff and have also seen many posts over the yeasr saying the same thing - not if i am crashed of course.

Perhaps i am abnormal then

again this is something that could be tested with a research study using acellerometers, diaries etc over a period of a few weeks.....though this would need to be large and lenghty so probly not likely to happen soon, sadly

cheers

Ally

 

[Allyson]

The biggest and most read thread I know of would be at http://forums.phoenixrising.me/index.php?threads/pace-trial-and-pace-trial-protocol.3928/ . Over 2000 posts and over 100,000 views.

.

yes but was that was for a period stretching over more than 2 years ...this thread has only been up 6 months

and that point was made by someone else - my point was that there is considerable interest in this topic.

But i dont think you are interested in it as you have made abundantly clear..... so not sure why you are still reading....


perhaps it is personal antipathy on your part rather but i have found the tone of your posts on other threads to be abusive and personal in nature an very hurtful so would rather that if you are not interested ....as you have made quite clear ....that you please do not write to me.


thanks

 

[Allyson]

Hmmm just reading the cover story on PR and note that they say this

There is a current, urgent need for ME research using patients who actually have ME.” We must have a disease appropriate definition for ME that is separate and distinct from all the other unrelated conditions encompassed by the overly broad, fatigue-focused “CFS” definitions.

good point; useful letter, lets hope it gets results.


A

 

[Allyson]

Hi Allyson,

It's a little difficult to decipher this last paragraph, but I personally don't know of anyone with ME/CFS who has "totally normal times"...and also how the EDS theory explains it to your satisfaction. With connective tissue disorders like EDS, perhaps it's possible to have some times where one feels "totally" normal, but not with ME/CFS. But again, that perhaps depends on your definition of 'normal times'. If you mean a few hours on certain days, then I would agree that some of us can feel at least almost normal...but just for a few minutes to maybe a few hours.

I do believe there is a subset of ME/CFS patients who also have some degree of EDS or other connective tissue problems, but I don't feel ME is "due to EDS", nor that EDS is caused by genetic abnormalities.

But we can all agree to disagree.

and sorry for my dyspraxic ctyppingg Danny - what it says is that the thesis is easlily testable

to see if time upright causes the problem rather thatn exertion

simply lie on e group of patients downn for a few weeks and let another group get upright

controll for all ohter factors - heat, compression clothing electrolyte consumtion and fluids etc

then assess their PEM and other crash symptoms

and compare the results

to my knowledge it has never been done

cheers

Ally

 

[Allyson]

Glucosaminoglycans - Tokyo research

(They mention a progeroid form of EDS whih i have not come across before.)


Mutations in B3GALT6, which Encodes a Glycosaminoglycan Linker Region Enzyme, Cause a Spectrum of Skeletal and Connective Tissue Disorders.

Nakajima M, Mizumoto S, Miyake N, Kogawa R, Iida A, Ito H, Kitoh H, Hirayama A, Mitsubuchi H, Miyazaki O, Kosaki R, Horikawa R, Lai A, Mendoza-Londono R, Dupuis L, Chitayat D, Howard A, Leal GF, Cavalcanti D, Tsurusaki Y, Saitsu H, Watanabe S, Lausch E, Unger S, Bonafé L, Ohashi H, Superti-Furga A, Matsumoto N, Sugahara K, Nishimura G, Ikegawa S.

Source
...
Laboratory for Bone and Joint Diseases, Center for Integrative Medical Sciences, RIKEN, Tokyo 108-8639, Japan.

Abstract

Proteoglycans (PGs) are a major component of the extracellular matrix in many tissues and function as structural and regulatory molecules. PGs are composed of core proteins and glycosaminoglycan (GAG) side chains. The biosynthesis of GAGs starts with the linker region that consists of four sugar residues and is followed by repeating disaccharide units. By exome sequencing, we found that B3GALT6 encoding an enzyme involved in the biosynthesis of the GAG linker region is responsible for a severe skeletal dysplasia, spondyloepimetaphyseal dysplasia with joint laxity type 1 (SEMD-JL1). B3GALT6 loss-of-function mutations were found in individuals with SEMD-JL1 from seven families. In a subsequent candidate gene study based on the phenotypic similarity, we found that B3GALT6 is also responsible for a connective tissue disease, Ehlers-Danlos syndrome (progeroid form). Recessive loss-of-function mutations in B3GALT6 result in a spectrum of disorders affecting a broad range of skeletal and connective tissues characterized by lax skin, muscle hypotonia, joint dislocation, and spinal deformity. The pleiotropic phenotypes of the disorders indicate that B3GALT6 plays a critical role in a wide range of biological processes in various tissues, including skin, bone, cartilage, tendon, and ligament.

 

[Valentijn]

yes but was that was for a period stretching over more than 2 years ...this thread has only been up 6 months

http://forums.phoenixrising.me/index.php?find-popular/content lists most popular threads in different time frames. But that takes the number of people posting to a thread into account.

and that point was made by someone else - my point was that there is considerable interest in this topic.
But i dont think you are interested in it as you have made abundantly clear..... so not sure why you are still reading....

Because you are aggressively pushing incorrect information at people. EDS is an interesting and relevant topic, but it is not ME. By trying to turn many symptoms and diseases here into EDS, you are badly misleading people. I avoided these threads for months, because your reaction to any disagreement was easy to predict ... but now you are posting in many other unrelated threads to push the EDS = ME agenda, and that is extremely annoying and is spreading the potential for harm much further.

perhaps it is personal antipathy on your part rather but i have found the tone of your posts on other threads to be abusive and personal in nature an very hurtful so would rather that if you are not interested ....as you have made quite clear ....that you please do not write to me.

I am posting here because your theories are incorrect. You do not have a right to have your expressed beliefs stand unchallenged, and I am trying to illustrate these problems politely as possible, despite the rather rude things you have said regarding my right to challenge your opinions, and your attacks on my personal experiences as an ME patient.

 

[Allyson]

Hi Allyson,

It's a little difficult to decipher this last paragraph, but I personally don't know of anyone with ME/CFS who has "totally normal times"...and also how the EDS theory explains it to your satisfaction. With connective tissue disorders like EDS, perhaps it's possible to have some times where one feels "totally" normal, but not with ME/CFS. But again, that perhaps depends on your definition of 'normal times'. If you mean a few hours on certain days, then I would agree that some of us can feel at least almost normal...but just for a few minutes to maybe a few hours.

I do believe there is a subset of ME/CFS patients who also have some degree of EDS or other connective tissue problems, but I don't feel ME is "due to EDS", nor that EDS is caused by genetic abnormalities.

But we can all agree to disagree.

Hi again Danny

i thinnk also it depends on how much you do - when i worked i had much less good time and as i get older good days seem less too - but hard to quantify.

i realise this is not at all scientific but i was puzzled as i have heard a LOT of PWME say they have good or normal times so i wanted some verifications or otherwise -


it might be good topic to start a poll on though to get a rough idea



.

 

[Allyson]

just reading through the 2011 concensus document


Notes: Orthostatic intolerance may be delayed by several minutes. Patients who have orthostatic intolerance may exhibit mottling of extremities, extreme pallor or Raynaud’s Phenomenon. In the chronic phase, moons of finger nails may recede.



however just noticed they say this too

Joint hyper-mobility is common. !!

as is Prolapsed Mitral Valve,

and this is intersting

evidence supporting a genetic predisposition to ME points to modifications in serotonin transporter genes

actually a very interesting document that i have only skimmed though til now - thanks Kina for pointing me in that direction.









A

 

[Allyson]

just saw this posted on another ME.cfs site
and reposted with permission from author

quote
Just wanted to put the info out there that I am another CFS patient (of 3 years) who has just learned that I have Lyme Disease through positive test results from an overseas lab (and clinical diagnosis - what I thought were CFS symptoms all fit with the Lyme picture). I mention this so that others who may be wondering about Lyme consider getting tested or even just read up and learn more.

unquote

very happy for her and shows it pays to connsideer all options with this illness - as she is young this will be probably treatable for her so we ara ll very happy for her.

A

 

[dannybex]

Thanks for asking the question Allyson. Kind of proves my point. Nearly everyone said 'an hour' or 'a moment', with the exception of the one person who said they take their dog for "very long walks". They must have fibro, or be misdiagnosed in some way. Just my two cents.

Anyway, while I can understand your focus, I don't think it's really good to obsess over one aspect of this very complicated and complex illness. There are many, many things that can or might explain our many various symptoms.

 

[Sushi]

...
l so would rather that if you are not interested ....as you have made quite clear ....that you please do not write to me.
thanks

Note: Posting in a thread is not "writing to you." A thread is a method of opening a topic for discussion. All who have experience or interest in the topic will post there. It you open a thread, expect discussion of the topic--both supportive of the poster's line of thinking and questioning that line of thinking.

Sushi

 

[Sushi]

just saw this posted on another ME.cfs site
and reposted with permission from author

quote
Just wanted to put the info out there that I am another CFS patient (of 3 years) who has just learned that I have Lyme Disease through positive test results from an overseas lab (and clinical diagnosis - what I thought were CFS symptoms all fit with the Lyme picture). I mention this so that others who may be wondering about Lyme consider getting tested or even just read up and learn more.

unquote

very happy for her and shows it pays to connsideer all options with this illness - as she is young this will be probably treatable for her so we ara ll very happy for her.

A

Why is this post in a thread on a thread about EDS?

It more properly belongs on a Lyme thread.

Sushi

 

[Sushi]

(Allyson writes to Valentijn:

....so not sure why you are still reading....

Because you are aggressively pushing incorrect information at people. EDS is an interesting and relevant topic, but it is not ME. By trying to turn many symptoms and diseases here into EDS, you are badly misleading people....

I am posting here because your theories are incorrect. You do not have a right to have your expressed beliefs stand unchallenged, and I am trying to illustrate these problems politely as possible, despite the rather rude things you have said regarding my right to challenge your opinions, and your attacks on my personal experiences as an ME patient.

Allyson

I am also posting on this thread because it seems the responsible thing to do. When someone is presenting a point of view on a health forum that is contrary to the research on the subject (in this case ME), it can be very misleading for members who are just beginning to explore their illness.

No responsible research on ME has ever suggested that ME is EDS or vice-versa. ME is not a connective tissue disease. If you carefully read the Canadian and International Criteria, this is very clear.

By "cherry-picking data" it is possible to attempt to relate anything to anything. But this is not helpful to other patients.

I agree with Valentijn that EDS is an interesting topic but, to me, it seems that by trying to relate every ME symptom to EDS, you may be discouraging any real interest in EDS as well as misleading ME patients who may not have the time and energy to do a lot of reading about their illness and rely on this forum for information.

Sushi

 

[Sushi]

Hmmm just reading the cover story on PR and note that they say this

There is a current, urgent need for ME research using patients who actually have ME.” We must have a disease appropriate definition for ME that is separate and distinct from all the other unrelated conditions encompassed by the overly broad, fatigue-focused “CFS” definitions.

good point; useful letter, lets hope it gets results.
A

Why post this here?

This is a comment on the cover story--it belongs on that thread.

Sushi

 

[dannybex]

Not even close, I'm afraid. The biggest and most read thread I know of would be at http://forums.phoenixrising.me/index.php?threads/pace-trial-and-pace-trial-protocol.3928/ . Over 2000 posts and over 100,000 views.

Keep in mind that every time you or anyone else even looks at the thread, it counts as a view ... so it really doesn't mean much. In certain subforums I tend to click on each thread, even if I don't read it, care about it, or agree with it. It's simply a nice way for me to change the color of the icon for that subforum so I can tell with a glance if there's any new posts.

Excellent point. Plus, most of the posts are Allyson replying to her own posts.

 

[Sushi]

Excellent point. Plus, most of the posts are Allyson replying to her own posts.

Yes, that is certainly a relevant observation for someone who wants to discuss the number of "hits" and posts.