I connected with PR in Dec 2015 but have never introduced myself. I didn't actually know there was a thread for doing that. I joined on the back of David Tuller's blogs, and we immediately threw ourselves into advocacy, reading more ( probably the other way round).
Perhaps if I'd introduced myself, I wouldn't have been welcome because I'd flirted with the enemy. I had joined AfME when diagnosed in 2008, and left when my eyes were opened. I did the Optimum Health Clinic 90 day course in 2013. By then I had improved a bit after some very good herbal treatments so that I actually got to London on 3 consecutive days. I couldn't have done that in my early days, and I couldn't do that now, mostly bedbound.
The OHC? Well I don't regret doing it, it didn't cure me but alongside
@Jenny TipsforME, i found it more 'nuanced' than some descriptions suggest. I don't think it was a waste of money ( about £600, but you could spend a lot more on nutrition assessments, supplements, additional therapy). I never met Alex but I sure saw a lot of him on video. He is a businessman as I think
@Keith Geraghty said. There are spin off courses to train as a ? Counsellor I think, not too sure. The sessions in London were led by someone recovered from " ME" ( many of you will be saying " chronic fatigue" and it may have been). I felt they were sincere in wanting to aid us towards recovery. There is more of a description of their staff in the Forward ME's minutes posted earlier by CS. One of the most helpful items was an introduction to the " maladaptive stress response" - see the earlier chart. Reminds me of Ron Davis' " cell danger response". They dealt with it by the usual ways of meditation, yoga, breathing, but with added techniques to aid removal of stress reaction.
It did help for a while. We had a nightmare terminal health problem diagnosed in a young family member and I needed to travel from the UK to NYC several times in the few months following-airports, hospitals etc, and I did it ok. I couldn't have done that before. I didn't collapse at the end either but holidayed in a remote bit of South Asia. I was significantly improved. But slowly and stealthily, the ME came back. And what makes my health worse now is learning about BPS, deceit, etc, etc, writing long letters, advocacy, all very stressful. Sometimes I think I shouldn't read about it any more because I feel worse, but I am not stopping now.
So the OHC. I don't believe it can cure ME. I believe its staff are well intentioned having recovered from cf, or maybe it was just the time for their disease to end. Don't go if you are emotionally dependent on being cured, but if you want to try in a fairly open minded way, some techniques or ideas that might help improve QOL, it might be worth a go if you can afford it. I didn't do the nutritional work and I rather wish I had but it meant extra appointments in the morning which I didn't have the energy for.
There is a big emphasis on calming your body's maladaptive stress. I found that helpful for a while. And on the diagram
@Jenny TipsforME posted which I haven'ti seen before, look at mitochondrial issues sitting right by it.
I have no other alternative routes to confess!! And I must introduce myself properly.