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Help Dutch professional Ballet dancer with M.E.

Grigor

Senior Member
Messages
462
Location
Amsterdam
Hello everyone,

I wanted to share with you the campaign of the Dutch ME/CFS foundation.
I'm sharing my story to create awareness for M.E. in The Netherlands but also world wide.
I used to be a professional ballet dancer and since my 29th I've been suffering from ME.
Hopefully the big contrast with being a professional ballet dancer to a handicapped ME patient will move something.
Help me share my story by email, Facebook or other places around the world so we can help end this bleeping illness.

Thank you very much in advance.

You need to turn on the subtitles. If you don't know how to do it follow this link.https://support.google.com/youtube/answer/100078?hl=en


Link on YouTube :Interview Anil van der Zee | ME/CVS Stichting:
 

Grigor

Senior Member
Messages
462
Location
Amsterdam
Sauna was terrible for me. Had to recover for a few weeks. Very much to do with Orthostatic Intolerance.
Anyways I'm not really posting to find a cure for me personally here. Just want to share and raise awareness for Myalgic Encephalomyelitis.
But thanks for asking. Appreciate it.
 
Messages
15,786
did you try sauna therapy, (infrared or dry)
Heat tends to be pretty bad for ME patients. Heart rate rises to try to cool us down, except it doesn't work too well for whatever reason. And then we end up getting exhausted and sometimes with our heart rate staying too high for hours or days.
 

Grigor

Senior Member
Messages
462
Location
Amsterdam
Thank you Matthew Jones. Well I can't say you're welcome. Cause I do it as well for myself.
Anyways share it. You never know who will see or read it.
 
Messages
15,786
Excellent interview and video, @Grigor , I'll be sharing it on Facebook :)

Have you ever had your OI investigated or treated? When mine was untreated, I had the same daily pattern ... sitting up, and a little standing in the morning, then laying down the rest of the day.
 

Grigor

Senior Member
Messages
462
Location
Amsterdam
Valentine. At the moment I can't go and see any doctors. I am too weak for it.
Other then that I have support stockings. It helps a bit.
What treatment did you get?

And thanks for sharing
 
Messages
15,786
Valentine. At the moment I can't go and see any doctors. I am too weak for it.
Other then that I have support stockings. It helps a bit.
What treatment did you get?
I take Yohimbe, but have to bring it from another country. It can't be sold in the Netherlands as a supplement, and no one's gotten around to making it a prescription medicine. I split each 400mg capsule into 4 doses, and take two per day.

Before Yohimbe I took Strattera for a while, which also worked quite well but is very expensive and not covered by Dutch insurance. I bought the 60mg capsules because they're the cheapest per mg, and split them into 10mg doses, of which I took 3 per day.

Both act to increase norepinephrine, which has tested low for me a couple times. Strattera works as an NRI (Norepinephrine Reuptake Inhibitor). Yohimbe is a very specific antagonist of ADRA2A (and 2B and 2C), which has been found to be elevated in ME patients in a couple small studies, and ADRA2A inhibits the release of norephinehprine. Neither Strattera nor Yohimbe are nice if the dose is too high, or if taken too late in the afternoon.
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
Sauna was terrible for me. Had to recover for a few weeks. Very much to do with Orthostatic Intolerance.
Anyways I'm not really posting to find a cure for me personally here. Just want to share and raise awareness for Myalgic Encephalomyelitis.
But thanks for asking. Appreciate it.

best wishes. just proves how we are all so different in many ways.
 

Aurator

Senior Member
Messages
625
@Aurator, thank you very much. But if she is not in the Netherlands she will not know my story yet. Hopefully they will after all this though
She's in a major city in the north west of England. I've already contacted her about this. She will spread your story. Best of luck!