Jill Remel

I probably got ME after a few severe infections in the 90’s.

Diagnosed with ME according to the Canadian Criteria by a specialist in 2008. ME was mild/moderate before LP.

I chose to try LP after having read the “recovery-stories” in the media. I was desperate for recovery!

I took a course in Norway in 2009. There was a unique sense of community/anticipation on the course. NOW we would finally get well again! It felt safer and easier to accept a kind of “brainwashing”-atmosphere during the course (critical questions were was not allowed either before or during the course), because a doctor was present as an observer. With a doctor present, it had to mean this was something proper and that it would work!

On the last day of the course, we proclaimed loud and clear that we did not DO ME anymore! We had recovered! I was in a “hallelujah mode” after the course. I constantly said to myself I had recovered. I did the LP process countless times. Everywhere. Anytime. I refused to listen to my body – even though it told me I wasn’t the slightest bit better.

Half a year after the course, I struggled to understand why I wasn’t in good health. What did I do wrong since I didn’t get well? The guilt grew bigger and bigger. What’s wrong with me as this doesn’t work? I’m just as sick today as I was before LP.

There is no way I can recommend an undocumented and potentially very harmful method like LP – when we know that many ME patients have deteriorated substantially, both physically and psychologically due to ignoring their bodies, guilt, depression/anxiety and even suicide attempts. Instead of “getting the life you love” – you risk driving yourself into the pit with full force. It’s too big a risk to take.

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