Recovery Norway does not make any claims about how many can get well from strategies like the ones our members have used, although we do think they are evidence that it is possible. We do acknowledge stories of people who have experienced worsening symptoms after such strategies too, and we think this is one reason for doing more research.
I got sick about seven years ago. Really sick. The doctors examined me in every way imaginable – I took endless blood tests, went through various x-rays, was tested at Aker University Hospital, spoke to a neurologist, etc, etc. I was finally diagnosed with ME (G93.3) after almost a year of testing.
I was finally diagnosed with ME (G93.3) after almost a year of testing.
My general practitioner was at the time something of an expert on ME, so I was lucky. I became a member of the Norwegian ME Association, researched cures and ways to improve my condition and joined the online fora to try to find some kind of treatment. After a while I volunteered as the ME Association’s local point of contact and joined the board of the Oslo and Akershus chapter.
I volunteered as the ME Association’s local point of contact.
The only treatments that were recommended and praised above all, were offered by Kenny De Meirleir or Mette Johnsgård in Lillestrøm. They practiced alternative medicine. The Lightning Process (LP) was strongly advised against, and one should expect a general worsening of the illness after an LP course. I tried the Kenny De Meirleir treatment and had two separate good weeks over a period of 18 months and was thousands of Norwegian Crowns the poorer for it. But damn it, it was worth it. This might be the solution!
The Lightning Process (LP) was strongly advised against.
I also started on Low Dose Naltroxene (LDN), which helped a little at first, but then the effect wore off. LDN was supposed to decrease fatigue and hopefully some symptoms.
I also took a self-help course at the Aker University Hospital, where I was a representative for the patients along with an ergo-therapist. We were trained at Aker and learned methods of ‘tackling’ the illness and symptoms, among other things. We became well versed in various topics to help us teach other ME patients. My old General Practitioner quit, and my new one had a different approach to ME and sent me to a psychologist to see whether anything could be explained from that angle. The psychologist couldn’t help me, as this obviously wasn’t a psychological issue.
The psychologist couldn’t help me.
I was an active member of the ME Association and times were good for a few years, but then I had to withdraw from it all as I got too sick to continue. I was still searching for the ‘cure’. All along I had heard so many negative things about the Lightning Process. That is the view that people take. I asked around and got my answers – a lot of negative answers. To bring this topic up in the Facebook-groups of the ME Association was considered bad form. However, had all the people who replied to my posts been to an LP course or were they simply repeating hearsay? Some had taken it, but as I started digging deeper it turned out that most had not. I kept digging, spoke to several people that had taken part and discovered that a lot of the negative arguments of the online fora were simply not true.
they said that those who recover through LP cannot have had ‘real’ ME.
I saw a lecture by an LP activist, read “Wake me when it’s over”, and talked to people that I knew had gotten completely well again after ‘real’ ME (they said that those who recover through LP cannot have had ‘real’ ME). The pieces were falling into place. I contacted an LP practicioner myself, had a long talk and finally signed up for an LP course. During the days of the course, it became clear that so much of what was said about LP is not true – it was a haze of myths and misinformation out there.
However, had all the people who replied to my posts been to an LP course or were they simply repeating hearsay? Some had taken it, but as I started digging deeper it turned out that most had not. I kept digging, spoke to several people that had taken part and discovered that a lot of the negative arguments of the online fora were simply not true.
The pieces were falling into place.
And here I am, several months after the course. I’ve never been better. ME symptoms – I am done with those. I’ve never been healthier. I exercise, enjoy myself, I live (!), I do exactly what I want, when I want.
I find it so sad that there are so many rumours and false stories about LP. I was not left to myself after the course, but have received good follow-up assistance. I’ve been able to call with any questions I might have. I don’t think 16,500,- Norwegian Crowns is a bad price to learn an awesome tool for recovery. I also haven’t signed any sort of document after the course to state that I am well again. I think it’s depressing that you’re met with such hostility if you dare to stand forward as someone who recovered through LP – that people aren’t able to rejoice in others’ journeys back to health. Would I be treated the same if it was some sort of biomedicine that finally worked for me? I doubt it. I think it should be possible to share experiences of LP too, especially in this group where more and more members join in their search for how to recover from ME.
The text above was shared online six months after my LP Course. It’s now been almost two years. I’m doing just as well. I’ve worked for a year and a half. I work 100%. I enjoy life everything it has to offer. I’m simply living a life without limitations. Damn, it’s amazing. I don’t regret for a second my decision to take the LP course!
(This text was first published on Recovery Norway´s Norwegian Facebook page in 2017).