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

[Allyson]

Useful Peter Rowe lecure on OI / POTS/ME/EDS

i have had times of waking feeling ok but not being able to do anything......so i can relate......afternoons ahve always been worst time for me though .

yes I am best in the evenings Sand; mornings and avos are about even for me -pretty bad - that is after my second waking at about 9-10 am.

thanks so much for the excellent u tube link to Peter Rowe lecure on OI / POTS

i have posted the link here for others to see and hopefuly give feedback on as I think it is one of the best explanations I have seen so far..
http://www.youtube.com/watch?v=5iF30TVLaRE

lecture starts at 8.22 minute mark - rest is preamble

 

[Allyson]

Useful Peter Rowe lecture on OI / POTS/ME/EDS

Hi Sandgroper,

thanks so much for the excellent u tube link to Peter Rowe lecture on OI / POTS

i have posted the link here for others to see and hopefuly give feedback on as I think it is one of the best explanations I have seen so far..

http://www.youtube.com/watch?v=5iF30TVLaRE

lecture starts at 8.22 minute mark - rest is preamble

 

[Allyson]

Some researchers have found that we have blood volume levels low enough to be causing shock in a normal person.. eg 2 Litres less blood then normal (I may of seen something somewhere saying that some of us even have less blood then that).

Interesting that you've found that you only need the compression around your abdomen and not legs too. Im always wondering how much Im pooling in my abdomen (that area of me really gets bigger at times). I dont noticably see my legs pooling (thou did occassionally in the past).

yes our bloodd flow to brain droops b between 45-60 % when we stand up apparently Tania

I think it is because the big blood vessels are in the abdomen that it helps to have the compression there

but ti fluid residue pools in the feet adn hands causing them to swell a bit if you are up afor a long time

 

[MishMash]

Dr. Rowe's presentation was excellent, if you were looking for a re-demonstration of his basic premise, as first proven in 1999. My reaction to his webinar was: "what's the point?" We already know this. It is now accepted that people get blood pooling, leading to some form of sickness or dysautonomia (call it POTS/OI/NMH). I'm not sure why he had to spell out all of those charts showing improvement from taking infusions of saline. If you were an informed ME/CFS patient before seeing this, you didn't come away with any new information.

I appreciate Dr. Rowe's bringing this phenomenon to light 15 years ago. He has done a fairly good job of showing the "what." But his case study of the 15 year old boy, becoming ill, afflicted with CFS, getting better with Florinef, was not at all new or interesting. The interesting part was that the boy's family all had hyper-flexibility. I was a little disappointed the doc didn't express any curiousity about what might be causing hyper-flexibility. If weak tissues are probably the genetic source of this type of CFS, then why not spend some time talking about the source. My basic point is that his research needs to move more in the direction of the "why?" Are we genetically susceptible to ME/CFS? That might be huge. It might be even considered a "bio-marker"-- the Shangri-la of all CFS-related medicine.

My only explanation for Dr. Rowe's lack of interest is his association with the CAA. They strike me as a big bureaucracy, with a gentleman's agreement to never make ascertions that go beyond the official policies of the disease's principals. Don't offend Peterson, Klimas, and the other gray-beards, who mostly believe ME/CFS is a viral illness. The self-proclaimed "CEO" of the CAA, Kim McCleary acts as the sheep dog, nipping at heels, making sure nobody moves beyond established theories (and dogma). I noticed on their website that Dr. Rowe's proposed research is to further investigate what effect blood pooling has on ME/CFS. I will restate my a previous point: we need new doctors/researchers working in this field; who are not beholden old ideas, shibboliths.

 

[MishMash]

@Tania
I'm very curious why our doctors/researchers aren't all that interested in this phenomenon. Basically ME/CFS patients are missing 10 or 15% of their blood supply on a regular basis. Rowe mentioned in the webinar that it had to do with being "sedentary". So you should exercise. But you can't do that-- cause you'll get malaise. Well, that about wraps up the webinar folks. Thanks for tuning in!

Personally, I would be a lot more interested in why we have diminished blood volume, than finding out more info about reactived viruses, which have been shown to be relatively common in the general population. But hey, maybe reduced blood volume is relatively common too. Or maybe the "shock" of having reduced blood perfusion actually reactivates the viruses, amps up the immune system. Researchers in this area have a startling lack of imagination.

Some researchers have found that we have blood volume levels low enough to be causing shock in a normal person.. eg 2 Litres less blood then normal (I may of seen something somewhere saying that some of us even have less blood then that).

 

[Allyson]

@Tania
I'm very curious why our doctors/researchers aren't all that interested in this phenomenon. Basically ME/CFS patients are missing 10 or 15% of their blood supply on a regular basis. Rowe mentioned in the webinar that it had to do with being "sedentary". So you should exercise. But you can't do that-- cause you'll get malaise. ....

Personally, I would be a lot more interested in why we have diminished blood volume, than finding out more info about reactived viruses, which have been shown to be relatively common in the general population. But hey, maybe reduced blood volume is relatively common too. Or maybe the "shock" of having reduced blood perfusion actually reactivates the viruses, amps up the immune system. Researchers in this area have a startling lack of imagination.

yes a drop in blood suppy to the brain of between 45-60 per cent is of major significance.

I note Rowe observes a concommitant drop in ACTUAL blood volume (as well as the PROPORTIONAL decrease due to the expanded veins ) but he does not explain why this happens or how they know it.

 

[Allyson]

The kitten wanted to go for a "walk" in the street this morning - before breakfast - about 11 am.
Already about 28 degres celsius and I am in the hot sun, mainly standing, while kitten explores - for about 10 minutes, but I have not drunk or eaten since I woke up.

I got home and felt a sudden drop in energy.

[Lay on couch; drank water.]

That makes so much sense that a lack of blood supply will cause a drop in energy.
blood is life and carries nutrients and oxygen to every part of the body so being deprived of it ( maybe a 60% decreases) for any length of time is going to cause major problems.

NO one has ever had any explanation for the "fatigue" in ME MS EDS
Maybe this is it.

and maybe it is not fatigue but a need to lie down combined with aching muscles - that would feel the same as fatigue but this would explain - as nothing else does - why this feeling is not relieved by rest.

there are a few other things i think it explais that nothing lse does so far

1. the dyspnoea - shortness of breath on minimal exertion - due to lack of blood supply to the lungs plus possible effects of adrenalin

and 2.
some little odd symptoms
a) skin flaps - connective tisse overgrowth
b) pimply rash on upper arms that comes and goes and scabbing scalp wounds - affect of adrenalin to skin ( adrenaline makes the hair on the skinn and scalp stand on end)

d not sure if these ae ME symptoms but easy bruising and petechiea - I have both and weak blood vessels would explain both

 

[taniaaust1]

@Tania
I'm very curious why our doctors/researchers aren't all that interested in this phenomenon. Basically ME/CFS patients are missing 10 or 15% of their blood supply on a regular basis. Rowe mentioned in the webinar that it had to do with being "sedentary". So you should exercise. But you can't do that-- cause you'll get malaise. Well, that about wraps up the webinar folks. Thanks for tuning in!

Personally, I would be a lot more interested in why we have diminished blood volume, than finding out more info about reactived viruses, which have been shown to be relatively common in the general population. But hey, maybe reduced blood volume is relatively common too. Or maybe the "shock" of having reduced blood perfusion actually reactivates the viruses, amps up the immune system. Researchers in this area have a startling lack of imagination.

Our low blood volume could be just cause we are laying down more (thou we dont have much of a choice) and having the normal affects of gravity against our bodies less. I think its in the OI section of the forum.. someone posted a study about astronaunts... they get low blood volume from being out of our normal gravity.

Maybe the low blood volume (from having to lay down more then normal) then causes the body to be a little weaker due to the less oxygen getting to places well..which in turn may help viruses reactive?? I know many different things like low oxygen environments...

Why do we get reactiving viruses so much?? the answer to that is an important thing to find out too. Its hard to say where the biggest ME answers will end up being found.

ME patients are in a catch22 situation... do more and get sicker.. but be laying down all the time and then the OI issues and issues with blood volume could be far more likely.

 

[Allyson]

Our low blood volume could be just cause we are laying down more (thou we dont have much of a choice) and having the normal affects of gravity against our bodies less. I think its in the OI section of the forum.. someone posted a study about astronaunts... they get low blood volume from being out of our normal gravity.

Maybe the low blood volume (from having to lay down more then normal) then causes the body to be a little weaker due to the less oxygen getting to places well..which in turn may help viruses reactive?? I know many different things like low oxygen environments...

Why do we get reactiving viruses so much?? the answer to that is an important thing to find out too. Its hard to say where the biggest ME answers will end up being found.
......

Some of us do NOT get frequent viruses apparently Tania, though I do - anytime I stop taking all my vitamins for a few days. That might be the basis for one division of disease classification for ME.

If the low blood volue was just from lying down a lot that would be easily testable: get a group of healthy controls to lie down for a while and see if they ALL get ME .... I don t think that would happen. And if that were the case everyone who got an illness that put them in bed for 2 weeks or more would have ME...... and that is certainly not the case. People can be in bed for months and then make a full recovery.

Astronauts get better once they have been back to earth a while, we don't.

But.... if they spent half the money they do on space research on us we might have a cure by now. ( eg. 2.5 BILLION dollars pent on the Mars rover Curiosity to see if there was microbial life on Mars... Hey, we have life on hearth that needs help....and for much less money than that.)

 

[Bonnie]

Gee, House is right with us tonight--now they have a possible POTS patient and they actually mentioned POTS! POTS and Ehlers-Danlos in one evening House marathon!

Sushi

Now House has a patient with Sympathic Overdrive. Of course, the sad thing is that they are choosing these diagnoses because they are exotic--no one has ever heard of them!

Hope it's ok to just jump in. I'm new here. But I never cared for House but might have to change my mind now..

 

[Sushi]

Hope it's ok to just jump in. I'm new here. But I never cared for House but might have to change my mind now..

He just did Diabetes Insipidus too--guess the writers are reading the forum!

Sushi

 

[Sherrie]

@Tania
I'm very curious why our doctors/researchers aren't all that interested in this phenomenon. Basically ME/CFS patients are missing 10 or 15% of their blood supply on a regular basis. Rowe mentioned in the webinar that it had to do with being "sedentary". So you should exercise. But you can't do that-- cause you'll get malaise. Well, that about wraps up the webinar folks. Thanks for tuning in!

Well no, for us exercise reduces the blood supply to our brain even more and continues to do so after 24 hours: The Negative Effects of Exercise on a ME/CFS Dysfunctional Brain

I should elaborate that this is the distinct difference between a ME/CFS Brain and a healthy or even depressed brain as blood flow in both healthy and depressed brains increase after exercise whilst ours decreases.

 

[MishMash]

Hope it's ok to just jump in. I'm new here. But I never cared for House but might have to change my mind now..

"House" was not renewed for next season. But you can still look for clues in the reruns.

 

[Allyson]

Interesting that you mention Horse Chestnut because the homeopathic form (Aesculus hippocastanum) is one of the few remedies my D.O. has prescribed that I have found helpful.

Thanks Camas I have forse chestunt caps but found thy did not agree with me - forgotten why now

?? headaches
I will start them again and see what happens

do yuohave any adverse reactions to the and what form do youtake them in please,
Thanks,
Ally

 

[Allyson]

Well no, for us exercise reduces the blood supply to our brain even more and continues to do so after 24 hours: The Negative Effects of Exercise on a ME/CFS Dysfunctional Brain

I should elaborate that this is the distinct difference between a ME/CFS Brain and a healthy or even depressed brain as blood flow in both healthy and depressed brains increase after exercise whilst ours decreases.

I have not read that link yet Sherrie but thanks.

ANd I think that adds weight to Mish Mashs point that if Dr Rowe looked at the CAUSE of the low blood supply he would perhaps be less hasty in recomending exercise as a treatment.

The link is not opening for me - any chance you could check and re-post it please - looks intereting. Thank you

 

[Allyson]

PEM has been the subject of papers by the Lights, the Pacific Group and Dr Klimas. Changes to the immune system after activity etc.

Do you know if EDS does this as well?

Only just saw this post so sorry I did not reply earlier
Yes my specialist claims EDS people get PEM as well.
That was the clincher for me.

 

[ukxmrv]

What did he think PEM was though Allyson? How did he describe it happening?

I've seen the debates over PEM in some of the new guidelines. It doesn't always mean that the same as Dr Ramsay did when he described it as the hallmark of ME.

Just asking as we patients often ask if other diseases have the same version as us.

 

[Sherrie]

Hey Allyson just to clarify I was replying to this "So you should exercise. But you can't do that-- cause you'll get malaise"

My point being, no it's not that you can't do that because you'll get malaise, but rather because it reduces blood flow for us not increase it like intended.

I have not read that link yet Sherrie but thanks.

ANd I think that adds weight to Mish Mashs point that if Dr Rowe looked at the CAUSE of the low blood supply he would perhaps be less hasty in recomending exercise as a treatment.

The link is not opening for me - any chance you could check and re-post it please - looks intereting. Thank you

Re the link, it still works for me, I am using firefox. Try this and scroll down to the very bottom of the page which is where the first link would take you if it worked. What it shows, is a set of 3 spect scans in a 37 year old woman with ME. The first scan shows the blood flow in the brain at rest, the second shows blood flow immediately after exercise and the 3rd, 24 hours later.

 

[Allyson]

Hey Allyson just to clarify I was replying to this "So you should exercise. But you can't do that-- cause you'll get malaise"

My point being, no it's not that you can't do that because you'll get malaise, but rather because it reduces blood flow for us not increase it like intended.



Re the link, it still works for me, I am using firefox. Try this and scroll down to the very bottom of the page which is where the first link would take you if it worked. What it shows, is a set of 3 spect scans in a 37 year old woman with ME. The first scan shows the blood flow in the brain at rest, the second shows blood flow immediately after exercise and the 3rd, 24 hours later.

Thanks so much Sherrie, I will try it now; interesting as I was thinking overnight that if you did a full body MRI during or at the end of a tilt table test is should show deficencies in blood flow if this theory is right - ie that being upright causes inadequate blood to the brain, heart and lungs.
So an MRI horizontal followed by - and during and after - a tilt table test may show something

the only problem would be if we automatically compensate by releasing more adrenalin to narrow the blood vessels so that no changes actually show.
MRI s are harmless.though a tilt table test is harmful for us.

 

[Allyson]

What did he think PEM was though Allyson? How did he describe it happening?

I've seen the debates over PEM in some of the new guidelines. It doesn't always mean that the same as Dr Ramsay did when he described it as the hallmark of ME.

Just asking as we patients often ask if other diseases have the same version as us.

Hey I didn't get that much detail sorry xrmv; Ijust asked if people with EDS had PEM and he replied with an instant and definite " Yes".
I see him again in Feb and wil ask more then - including references or symptoms lists if they have been published or are available yet.