I agree with Valentijn. I don't think it makes sense to think that all ME/CFS cases must be misdiagnosed EDS. Sudden onset EDS symptoms doesn't compute.
I was at peak fitness when I became ill (at the age of 31) and had never suffered any of the symptoms associated with EDS (yes, even though I am more limber than most people).
Airplane travel never bothered me before I became ill. Now I hate it because the stress and exertion wipes me out, and the uncomfortable seating makes my pain worse.
However, I hope that people who truly do have EDS get the appropriate diagnosis and not lumped in with those with ME/CFS out of physician laziness.
no i am not saying all ME are EDS - but many are and it is a shame to miss this diagnosis for want of knowing about it
the question was for this thread - did flying coincide with your initialonset of symptoms if you can remember
this is my own theory -
i know it did for Tony Bernardt and many others And wonder why?
many say - oh it must have been a virus, stress, etc etc - - but we do NOT know - so why not look at all options?
Many of us were also at peak fitness - myself included -but so are many with other tragic genetic illnesses - think of Jacqueline Du Pres.
most of the symptoms of EDS are actually identical to ME symptoms - that is why the diagnosis is missed
David Suzuki on science - paraphrased
it is not scientific to just dismiss anything simply because it is a new idea or you do not like it
examine it first, test it , then decide to dismiss it ( if it doe nto stand up to the scientific testinng)
EDS has never been tested and that is all i am asking - for discussion and consideration of it
the general theory is not mine at all but was told me by a senior professor of medicine at a major teaching university who is investigating it.
He is the teacher of tomorrow's doctors so i am glad he is believing us at last
HE told me " I used to be skeptical (about our alleged symptoms!) .....
BUT SO MANY PEOPLE SAID THE SAME THING that i had to innvestigate it and now i believe it.
cause and efffect - we do not know
I saw a meme recently that said -
BIRTHDAYS are good for your health
Research has shown that people who have more birthdays live longer..
'Airplane travel never bothered me before I became ill. Now I hate it because the stress and exertion wipes me out, and the uncomfortable seating makes my pain worse.'
But sitting in a plane is not exertion for most people ....boring , yes , but WHY does it wipe us out and not most people? I know many people who are over their jetlag in 2 days.
My docs explanation - the vasodilatation caused by altitude ( to which I add, the heat, the sitting still and sitting upright , the dehydration due to airconditioning and heat.)
He says many people find out they have EDS when they go mountain climbing tfor the first time ... and drop dead!
due again to the depressurisation which is major - flying in a plane is like climbing to 9000 feet
(He is head of a major Spinal Unit so i think he knows of what he speaks.)
Sudden onset ME symptoms do not compute either - but maybe they were subtle or masked for many years.
Anyway, within a year of two they will have a gentic test for EDS and that will resolve it the matter....
I have a firm diagnosis and am annoyed to say the least that it took over 25 years to find it so am sharing this information to hopefully save SOME others the wait and lost lives....
but really sometimes i despair - i would have thought PWME of all people would have open minds at least .......after all we have been through with people not accepting that our symptoms are even real.