Mike’s ME Marathons – The Story Of An ME Sufferer In Luxembourg

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By Mike Harley.


My next marathon (no 11 of 28) is in Luxembourg on May 27th.

By similar ratios to the rest of Europe, 2,000 of the 500,000 people living there have ME.

I’ve interviewed Katja from Luxembourg who has given her account of what it’s like to live there with the illness.

She’s had a terrible time of it and it’s a tough and moving read, but it’s important that people know what this is really like.

Please share it.

I’d love for Katja to have others to talk to. It could take a while but maybe a support group could emerge.

Big thanks to Juli for finding Katja as well as Ben, Simone and Sabrina for your help with translations and putting this together.

I hope we can raise a bit of awareness through the marathon website/socials & press over there. Regardless of how tough the race is set to be, I’ll be happy if I can make a small difference running for the 2000.


I spoke to Katja who suffers from ME and lives in Luxembourg; here is her story….

  • How did you get sick?

Well, that’s a veeeery long story…

In March 2009 I had surgery because of “Endometriose” and was injected with “Decapeptyl” to trigger menopause for a few months.  My body didn’t cope well under those injections, but my gynaecologist didn’t believe me, referring me to a psychologist.  I developed severe anxiety, had hot flushes, terrible headaches… in addition to all of this my thyroid medication was switched from “L-Thyroxin” to “Armour thyroid” (I suffer from “Hashimoto thyreose”…) – from there it went downhill: I was stuck in bed, my heart rate hit 180, I was scared.

On some days I couldn’t move at all, all I could do was think.  I had no energy to do anything really, I was just tired and exhausted and felt dizzy – everything was strange…I could no longer work as a “Dialyse” nurse and all experts thought it was all in my head. I have a lengthy medical history… I also got pregnant unexpectedly, still stuck in bed. I gained 30kg, I couldn’t cook or clean and even cleaning myself became torture.  I was constantly exhausted, my eyes didn’t want to stay awake – no one can imagine how terrible this was.

I kept seeing a psychologist- I had to be dropped off at my appointments a I was not even able to get there – just too exhausted.  I searched and searched for help.  I went to Belgium to a doctor specializing in “hormones” – she prescribed cortisone with the suspicion that I had “problems with my side liver” – which turned out to not be true –  after 6 years of taking cortisone.  This is it in a nutshell – I could fill an entire book with the full story.
To read the rest of this story, click on the link below:


Link to ME Story

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