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

[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.

Hey Sherrie, fantastic it works for me - excellent link grat photos ! thanks so much.
I have re-psted it here for others.
http://www.name-us.org/ResearchPages/ResNeuro.htm

 

[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 Sherrie, that was a great link; also some really good research articles on same page.

Yes I agree with your point; I also didn't much like the way he said lying around in bed is not helpful - as if we are doing it because we like it !!

Lying in bed is not good for quadriplegics either but no-one says that to them implying they are lazy!
Cheers,
Ally

 

[Allyson]

Re

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.

And re defining PEM
that is the kind of thing I was trying to ask earlier
has anyone defined and delineated the words we use to dexcribe our illnesses
like a crash - wha does that mean, is ther atechnical - medical - term for it
ditto for PEM - has it been studied and defined and described?

 

[ukxmrv]

Hi Allyson,

It was Dr Ramsay who wrote about ME and used the term post exertional malaise. He wrote a book on ME and also medical papers. This was long before the term CFS was invented. He saw patients and gave talks. He wasn't able to get very much funding in the UK though or his collaborators to study it. I was lucky enough to meet him before he died.

More recently, other researchers have been looking at the post exertional side of CFS. Dr Klimas, The Lights and the Pacific Lab group. You'll find lots of papers online and talks etc.

There has also been attempts to define the post exertional effects on some of the new criterias. A very big topic with a lot of debate.

Would be interesting to see if your doctor has the same idea of PEM as any of these researchers and if the immune system and other abnormalities found in PWCFS are found in those with EDS.

Are you aware of any published research that shows immune system and other abnormalites after exercise in people with EDS?

 

[MishMash]

Hey Sherrie, fantastic it works for me - excellent link grat photos ! thanks so much.
I have re-psted it here for others.
http://www.name-us.org/ResearchPages/ResNeuro.htm

Ally,
Quite amazing that these high-quality MRI images date back to the early-nineties. And they are still arguing whether we get PEM crashes or not. Unreal. This should be accepted as fact, and we should have moved on to new research. From the "what" to the "why".

For example, what types of persons are susceptible to ME? Are there any hereditary markers? What disorder can be triggered by viral, environmental, emotional, or physical stress? If there are so many diverse triggers, maybe it's the patient and not the trigger that's the cause? Just using basic logic.

He's a good and decent man, but if you read the content of Dr. Rowe's current research (funded by the monolithic, obtuse CAA) it is just plain dumb. If you are a disabled patient, it will make you depressed.

Basically he has hired a physical therapist to manipulate limbs and joints of patients. He thinks the movement of the muscles over the nerves (or something) causes ME symptoms. http://www.research1st.com/2012/06/13/rowe-riww/

This is from a doctor whom I heard say he treated a ME/CFS-afflicted kid who had family with hypermobile joints. Rowe has said himself before that weak tissue structures are associated with ME. So he knows about this stuff.

I can only think his funding source--the CAA-- is demanding that his research be "news you can use" (ie, treatments now for patients) rather than searching for the actual genesis of this illness. But this treatment--massage, basically--will of course only address (mildly) the symptoms, not the cause.

We seemed determined to explore every worthless, futile path, before picking the one that is most obvious. And it's why precious funds for our illness get squandered, and years and years go by with no progress.

“Our study is an attempt to see if that kind of nerve and muscle strain loads the nervous system in such as a way as to increase its sensitivity so it then ‘over-responds’ to various stresses,” he said. If the group can firmly establish that physical problems in range of motion and nerve glide interact to increase CFS symptoms, “that would suggest new ways to treat people with physical therapy techniques that haven’t been emphasized in the past,” he said. These include gentle manual techniques to reduce muscle spasm and tightness, improve soft tissue range of motion, reduce tension in the nerves and surrounding soft tissues, and, using a technique called neural mobilization, improve the ability of nerves to “glide” through muscles and soft tissue.

 

[ukxmrv]

Professor Brostoff (papers with Costa et al on SPECT scans) would have loved to have done further work but no one would fund them. All their applications were turned down. As you probably know the Psych lobby has had the stranglehold on much of the funding providers here.

After the Rowe paper and the Brostoff paper some of the others doctors experimented to try and see if there were any treatments that could help patients with the low blood to the brain. There was limited success on patients that I knew. Some tried IV saline and there were drugs tried. It never took off or was developed. So long ago I can't even remember the names of the drugs I tried back then.

 

[Allyson]

Hi Allyson,

It was Dr Ramsay who wrote about ME and used the term post exertional malaise. He wrote a book on ME and also medical papers. This was long before the term CFS was invented. He saw patients and gave talks. He wasn't able to get very much funding in the UK though or his collaborators to study it. I was lucky enough to meet him before he died.

More recently, other researchers have been looking at the post exertional side of CFS. Dr Klimas, The Lights and the Pacific Lab group. You'll find lots of papers online and talks etc.

There has also been attempts to define the post exertional effects on some of the new criterias. A very big topic with a lot of debate.

Would be interesting to see if your doctor has the same idea of PEM as any of these researchers and if the immune system and other abnormalities found in PWCFS are found in those with EDS.

Are you aware of any published research that shows immune system and other abnormalites after exercise in people with EDS?

Hey thanks for that great info xrmv.

no i have not looked into any reseach on PEM in EDS. But i trust my source. He i open and very smart and would not say it if he had not heard it. As i sain I will ask for more info in Feb adn keep you posted though.
Cheers,
Ally

 

[Allyson]

Ally,
Quite amazing that these high-quality MRI images date back to the early-nineties. And they are still arguing whether we get PEM crashes or not. Unreal. This should be accepted as fact, and we should have moved on to new research. From the "what" to the "why".
.....

He's a good and decent man, but if you read the content of Dr. Rowe's current research (funded by the monolithic, obtuse CAA) it is just plain dumb. If you are a disabled patient, it will make you depressed.

Basically he has hired a physical therapist to manipulate limbs and joints of patients. He thinks the movement of the muscles over the nerves (or something) causes ME symptoms. http://www.research1st.com/2012/06/13/rowe-riww/

This is from a doctor whom I heard say he treated a ME/CFS-afflicted kid who had family with hypermobile joints. Rowe has said himself before that weak tissue structures are associated with ME. So he knows about this stuff.

I can only think his funding source--the CAA-- is demanding that his research be "news you can use" (ie, treatments now for patients) rather than searching for the actual genesis of this illness. But this treatment--massage, basically--will of course only address (mildly) the symptoms, not the cause.

We seemed determined to explore every worthless, futile path, before picking the one that is most obvious. And it's why precious funds for our illness get squandered, and years and years go by with no progress.

Thanks Mish.
yep that is tragic indeed !

hopefully with all the new fb and other pages openinng up now and more people being diagnosed there will be some impetus to change
and if the EDS people are more efficient and want to take up the challenge that would be great for us.

 

[Allyson]

[quote=" [/quote]

someone asked about treatments - sryy for gotten who
this is a guess
but i am wondering if the things they use to treat skin hair and nails would there fore help us
I know they certainly make my fingernails stronger within afew weeks of regular use

One is horse chestnut - I have forgotten the other ingedients they use.

For skin and collagen production it is omega 3 s, lycopene - found in
red vegetables like tomatoes, red capscum and avocado oily fish green leafy veges etc.
Anyone got any thoughts?
I might order a skin hair and nails supp with my next supp order and just see if it helps.

 

[sandgroper]

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.

 

[sandgroper]

Yes...this is old news but for newbies quite good. ts interesting that the drawing showing the overlaps of POTS EDS and CFS.....you would think this defines a unique group for research purposes. My profile is so different to manyu who have viral type symptoms. It took many years of perseverance to get the hyper mobile EDS dx and now i am doing somethings for that. I am now almost 60 so things definitely get worse with age if care is not taken. i have been on decline for years.

 

[jonnyboy]

Wonder if its worth starting a poll?
To see how many of us have been also diagnosed with EDS, how many think they could have it (fit the criteria but no official diagnosis), and how many have been told they dont have it(been ruled about by a doctor who knows about it)?

I dont think looking at the criteria for eds and saying that you dont have it via self diagnosis is that helpful thou. I had a look read thru the criteria in 2011 and didnt think I fitted it, before being diagnosed 3 months ago.

Just thinking out loud here really.
Maybe a few options, like who has eds, pots and me, who has just eds and pots, maybe a severity scale. For me personally thou my fatigue and stamina arent great, its my autonomic issues which impact me greatly, (Cant even tolerate sitting up right for long)

Also not sure how to start a poll

 

[Sushi]

Wonder if its worth starting a poll?
To see how many of us have been also diagnosed with EDS, how many think they could have it (fit the criteria but no official diagnosis), and how many have been told they dont have it(been ruled about by a doctor who knows about it)?

I dont think looking at the criteria for eds and saying that you dont have it via self diagnosis is that helpful thou. I had a look read thru the criteria in 2011 and didnt think I fitted it, before being diagnosed 3 months ago.

Just thinking out loud here really.
Maybe a few options, like who has eds, pots and me, who has just eds and pots, maybe a severity scale. For me personally thou my fatigue and stamina arent great, its my autonomic issues which impact me greatly, (Cant even tolerate sitting up right for long)

Also not sure how to start a poll

Hi,

Polls are great ideas but never seem to be statistically significant here because very few members seem to answer them--partly because it is so hard to construct a poll that gives each member a relevant option to choose. Also, most members only read a very small percentage of the threads and will likely miss the poll.

Sushi

 

[Allyson]

Yes...this is old news but for newbies quite good. ts interesting that the drawing showing the overlaps of POTS EDS and CFS.....you would think this defines a unique group for research purposes. My profile is so different to manyu who have viral type symptoms. It took many years of perseverance to get the hyper mobile EDS dx and now i am doing somethings for that. I am now almost 60 so things definitely get worse with age if care is not taken. i have been on decline for years.

Thanks Sandgroper; I totally agree.
I did 3 years of exercise - ending 2 years ago and am worse the wear now- I spent ever day of that time in bed in discomfort but forced myself to the gym almost every evening between 5-7 pm. I got fit (ie I looked fit) and lost weight but the ME never got any better... in fact I think it got worse and now the dizziness is getting worse for me too, to the point where I am housebound and usually bedbound. If this - EDS - is the cause then is seems exercise would be counter productive if you are not getting adequate blood perfusion of the heart and lungs (not to mention brain) while you are exercising. I repeat: I LOVE exercise so would rather do it than not do it.... but it is hard to do when you literally hit the ground after 10 minutes of cardio. I hope Dr Rowe has revised that thought and advice at least in the interim.

 

[Allyson]

SLEEP

I have been sleeping very wll lately which i thought was due to the IM B12

However I have also bn doing lttle activity physcally
I restarted yoga, went for a bike ride - 1 hour
and yesterdday went to lunch and a movie - first time in months
usually i the cinema i sit with my feet up but could not do ths yestarday due to the new seats.
As my activity increases my sleep decreases - I wake now again a t 3-4 am and stay awake til about 6-7 am.

I wonder if that could be due to adrenalin released to cause vasoconstriction to compensate for the upright posture?

 

[Allyson]

ME DIARY
a couple of people have contacted me about keeping diaries of symptoms

Two suggestions if you are doig this would be to recore the temperature of the day and how hot you get that day - eg if it s avery hot day over 35 celcius say but if youar ein air -con all day or exposed to thhe heat

and secondly to record how much time you spend upright - dsittig or standing
say you are 2 hours on a computer - but record is that sitting up at a desk or lying in bedcouch.
ALso if that upright time is stillor movig- eg a 10 minute bike ride or a 10 minutee convesation with a neighbour, say.

These kind of things might help show a pattern of how heat and verticality affects you or not.
WOuld love to hear any feedback.

ALso is anyone keeping an Online ME diary - could then share the site please?
Thanks
ALLY

 

[Shaeshae]

Hi there, I found this information very interesting. We are told time and time again that not much is known about Cfs/me ( cures that is) GED, anti d's, some people I know have been told that it's all in their heads which I think is just ridiculous. I asked why my doctor prescribed lexapro to aid in my recovery, i was told " we think it helps the immunity and brain chemistry associated with fatigue, we dont know how it works exactly."I believe it would be naive of anyone to rule out different ideas. the condition you're describing I'd never heard of, there is so much to learn. Thank you for posting, all information should be passed on! After all, we all want to get better!! Take care of yourself.
Shae

 

[Allyson]

Tha

Hi there, I found this information very interesting. We are told time and time again that not much is known about Cfs/me ( cures that is) GED, anti d's, some people I know have been told that it's all in their heads which I think is just ridiculous. I asked why my doctor prescribed lexapro to aid in my recovery, i was told " we think it helps the immunity and brain chemistry associated with fatigue, we dont know how it works exactly."I believe it would be naive of anyone to rule out different ideas. the condition you're describing I'd never heard of, there is so much to learn. Thank you for posting, all information should be passed on! After all, we all want to get better!! Take care of yourself.
Shae

Thanks Shae, great comment and I quite agree; no one knows the cause of the fatigue - or most of the other symptoms at all and this is the most likely explanation I have heard so far, and one which is all encompassing enough to cause most if not all of our symptoms - connective tissue being such a major component of the entire body.

And I agree too - to examine all possibilities with an open mind is a good idea.
Most treatments around are indeed hit and miss so far, it seems.

 

[Allyson]

Wonder if its worth starting a poll?
To see how many of us have been also diagnosed with EDS, how many think they could have it (fit the criteria but no official diagnosis), and how many have been told they dont have it(been ruled about by a doctor who knows about it)?

I dont think looking at the criteria for eds and saying that you dont have it via self diagnosis is that helpful thou. I had a look read thru the criteria in 2011 and didnt think I fitted it, before being diagnosed 3 months ago.

Just thinking out loud here really.
Maybe a few options, like who has eds, pots and me, who has just eds and pots, maybe a severity scale. For me personally thou my fatigue and stamina arent great, its my autonomic issues which impact me greatly, (Cant even tolerate sitting up right for long)

Also not sure how to start a poll

Hi Jonnyboy,
not a bad idea
I for one have evidently had these issues for a long time but ws not aware of them
same as for findng out you have ME i guess - symptoms so vague at times and come and go it is not until you learn about them that you realise that is what you have.
Eg brain fog I have had for years but never put a name to it - just know i was feling crap an coulld not get upor concentrate that day.
Now i realise i stagger a lot and fall against the walls - esp when i first stand up - but did not lintk that in eitheruntil this specialist pointed out the connection
I don t know how to start a poll either but i think a basic one would be a good start.
will try and think up a few questions - anyone else got any ideas too?

thanks
Ally

 

[Allyson]

Shae

Hey Shae. I just read Australian football player Alistair Lynchs book on his journey with ME that you recommended on NC.
I only read the ME bits but several things struck me.
I wal not looking out for this

First thing he said helped him and fellow ME sufferer world motor bike champion ??Paul Sheene (who died sadly at 52 of cancer. was an icy cold spa every morning. ( cold waater plus compression on the abdo)
Healso tried hyperbric chambers and I think they would apply compression to the body too.
then his illness was exacerbated by the air travel to Brisbane once VFL became FL involving 2-3 hour flights every week for games. this was particularly noticeable when he started to fly Perth - Brisbane which would be an even longer flight maybe 4- 5 hours?

HE alo notes he was doing OK then one really hot February after a training in the extreme heat he had a major relapse.

HE had to see 30 - 40 doctors before he found help - and also saw various naturopaths etc...
All these things are fully compatible with EDS; I was not reading to find this info but after a while the pattern struck me.
(BTW he is also of celtic (viking) descent judging by the name and DR L in Melbourne has noted there is a strong prevalence of ME in people of viking descent.)

Interesting read thanks and Ihope he is doing better.
He also names many many other athletes who have it - including Johanna Griggs ( now host on Better Homes and Gardens
Interesting also htat he sasy evey time e had publicity about his disease he was flooded with emails and letters about it.