I most likely developed ME after a bad stomach/gut infection when I was around 10 years old. I also have other auto immune diseases, among others asthma/allergy and alopecia areata (patchy hair loss). The disease course has been chronic and fluctuating, with countless infections until well into adulthood, e.g. chronic sinusitis, chronic urinary tract infection, severe throat infections and many rounds of pneumonia. The medical assessments on me began when I was around 20, and they found nothing.
I have a medical journal that is as thick as a book, but with no findings… I got worse with each crash and ended up bed bound after a month with exercise during a stay at an institution. A few weeks after this stay, I became numb and had decreased sensitivity on the whole of the right side of my body.
I had an emergency admission at a neurological ward for assessment for blood clots and MS. When nothing was found, they lost interest, discharged me and left me to myself. After this, my GP referred me to Haukeland University Hospital where I was diagnosed with ME by a specialist according to the Canadian criteria. This was in January 2005.
To sum up: I got sick when I was 10, started medical assessments when I was 20 and received a diagnosis when I was 51! It was my physiotherapist who told me about LP. I threw myself into it enthusiastically and traveled to England in January 2007 together with 2 others. I wanted to recover. I was still in bad shape then, and on 20% work ability assessment.
On the LP course we learned that we “did” ME, and that it was up to us to get better. We were told about both young people and adults who came in wheelchairs and could leave the course walking. Everything was secret, and not allowed to be talked about. We were supposed to cut all ties that reminded us of illness, cancel our membership of the patient organisation, stop treatments related to ME, throw out the sofa, and other things that reminded us of ME. And do LP immediately if doubting.
On the way home I got a bad flu and became very poorly. I mentioned this to the coach during a follow-up conversation. It ended in a reprimande; had I completely forgotten everything I had learned, and she said it was my fault for being ill…
Proud and stubborn as I am, I lied to everyone: friends, colleagues, family and myself. So I pushed myself and kept going on adrenaline for as long as I could. But I didn’t recover, and still haven’t. Before LP I was on disability benefits at 60%, and after work ability assessment and many sick leaves I had to give up the last 40% as well.
While I was still on adrenaline and pretending to myself and others that I had recovered, I recommended LP to other ME patients. Later on this has become very painful and difficult for me, that I tricked others into paying for this brainwashing. And not least the cruel shame I felt, first for not succeeding, then for being deceived, and on top of that for having spent so much money on it.
Now I would never have recommended LP to others!
The text was first published here:
Lightning Process is harmful to ME patients