1. Is ME and/or CFS a disease?

In this first seminar Prof. Dr. Kenny De Meirleir talks about the definition and acknowledgement of ME/CFS.
This web seminar is part of the project 'Wetenschap voor Patiënten' or in English 'Science for Patients'. This project is realized through a collaboration between Science Alliance and the Dutch ME/cvs Vereniging ( me-cvsvereniging.nl ). There will be 20 web seminars with Prof. Dr. Kenny De Meirleir. Other ME/cfs scientists will follow. Not all seminars are available with English subtitles yet. We are working hard to produce them for you. Sign up to this KZbin channels to see the latest video's.
This video does not contain any diagnostic or therapeutic information about your own medical condition. It can never replace a personal consult. Notify your attending doctor in time about any question, complaint or sympom you might have.

[@MrMayarama]

I have been suffering from this condition for over ten years now and it is so good to see someone who understand this condition, explaining it simply, while describing the broader context. I welcome such an informative Seminar. Please make more of these available & where possible use English Subtitles. GREAT FIND, THANKS !!!!!

[@hannej9818]

This is important information! Thank you for adding english subtitles.

[@Wetenschap-MEcvsVer]

Howard, we are working very hard on that. All 20 will be available with English subs in the end.

[@CactusforceX]

im 19 years old and have this, passed down from my mum. what he says about the recovery times is so true, heres why. I had always been fit and active up until my mum/sister got horses (was about 14 at the time) and since then, have been doing hard physical work with a decent enough diet and enough rest time inbetween. I should have incredibly low body fat and big muscles for the amount of hard work I put in, yet I can't get up the stairs without running out of breath. my dad who is almost 60 does NO exercise and never has yet he can run further then I can. I still have an initial strength advantage over most at first because of my weight training when I was younger but within seconds, im in pain and exhausted to the point of collapse. not to mention im on an obcene amount of painkillers such as morphine/tramadol and weed none of which I can get hold of legally because my disease isnt believed to exist. that might sound great to some but the last thing I want to do to my body is fill it with that junk, yet I have no choice otherwise the pain is unbearable. just thought I would share my current story incase anyone is in the same position so at least they know they are not alone.

[@macscroge]

Go and see Dr. Julia Newton in Newcastle, she's a specialist in M.E. I thought I had M.E. but she diagnosed me with P.O.T.S which has much more treatment available.

[@CactusforceX]

ill look into that, thanks for the info man

[@macscroge]

CactusforceX in the meantime go to a pharmacy and try on some abdominal bands, they stop the blood pooling and really made a bug difference to me. Good luck!

[@CactusforceX]

Ive had a look at some POTS videos and the symptoms do match me exactly. those bands sound interesting so I will get some in the morning. thanks so much for the advice, good luck to you too :)

[@mudslinger888]

Anyone know if there is a transcript of this series? It is excellent and I think the best for sending to uneducated doctors in the usa (esp KP drs..), HOWEVER, due to actually having this horrible, unrecognized condition, the intro/exit "music" is a horrible noise I can't bear, and of course like most modern music-over-voice habits, it is far louder than the actual video, so it really bites. This topic ought to have the gentlest, non-sharp music, as in no tinkly piano or high notes.. I have wasted over 7 years with KP and likely will have permanent damage now, they toss you into the mental-health bin, seemingly having no creativity whatsoever, and just wanting to give pharma-poisons which interfere with true healing. Thanks for this.

[@CactusforceX]

forgot to add, im living in the UK. I guess the open mindedness of the US hasnt spread this way.. the doctors dont even know what im talking about and offer nothing but counseling.

[@ninininibooboo]

Wait. First you say it IS a disease and then later you say it is a syndrome. So, which is it?

[@mihakavcic7237]

Its a open code condition. :)