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

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Nov 12, 2012.

  1. Allyson

    Allyson *****

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    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
    MishMash likes this.
  2. Allyson

    Allyson *****

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    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
    MishMash likes this.
  3. Allyson

    Allyson *****

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    Re

    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?
    MishMash likes this.
  4. ukxmrv

    ukxmrv Senior Member

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    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?
    Allyson likes this.
  5. MishMash

    MishMash *****

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    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.

    Allyson likes this.
  6. ukxmrv

    ukxmrv Senior Member

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    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 likes this.
  7. Allyson

    Allyson *****

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    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
  8. Allyson

    Allyson *****

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    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.
    sandgroper likes this.
  9. Allyson

    Allyson *****

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    [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.
  10. sandgroper

    sandgroper

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  11. sandgroper

    sandgroper

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    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.
    warriorseekspeace, ahimsa and Allyson like this.
  12. jonnyboy

    jonnyboy

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    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
    warriorseekspeace and Allyson like this.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    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 and merylg like this.
  14. Allyson

    Allyson *****

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    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.
    warriorseekspeace likes this.
  15. Allyson

    Allyson *****

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    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?
    MishMash likes this.
  16. Allyson

    Allyson *****

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    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
    warriorseekspeace and MishMash like this.
  17. Shaeshae

    Shaeshae

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    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 likes this.
  18. Allyson

    Allyson *****

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    Tha
    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.
  19. Allyson

    Allyson *****

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    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
  20. Allyson

    Allyson *****

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    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.

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