Monday, November 13, 2006

Experimental Treatments

Every so often I get emails from PWME on the subject of the controversial methods (treatments?) that go by the names Reverse Therapy, Mickle Therapy and Lightning Process. These talking mind/body therapies have only recently appeared in the world of ME/CFS. Now, if I myself were helped by something, I too would spread the word like a tambourine-shaking evangelist, so I am not offended by these stories. I am, however, baffled by them. Completely baffled. I don't understand how rearranging the mental furniture could cure ME, any more than it could cure MS or Epilepsy or Parkinson's. Yet I cannot deny that some people seem to benefit. Do they have the same illness?
I always try to keep an open mind and when I heard about a local hypnotherapist working with PWME, I gave it a try. Long story short - it did not work. Perhaps I did not try long enough but in the end the hypnotist implored that if I didn't believe in him, the outcome would be 'hopeless' and if I did believe in his treatment, then 'it would work'. God, I tried so hard to make that quantum leap in my head. Yet it seemed an ingenious unfairness to pin it all on my beliefs and not his.
I had watched TV hypnotist, Paul McKenna work intensively on a woman with MS to help her get to a family wedding. There were short term, short-lived improvements but McKenna was adamant that he could not cure this woman; he could only give a brief lift to her mind and spirit. She made it to the wedding and the cameras departed after that. I can only guess at the payback.
The other thing about these treatments is the cost. For a full course, you are talking £500 - £1000 for starters. If the therapy was free, I'd try it all. I'd give it hours of effort. Ditto if the therapists gave money-back guarantees. If you paid £49 at the hairdressers and your hair wasn't a millimeter shorter, you'd ask for your money back - why is this different? Therapists have always rejected my request for no improvement / no fee deal. Come on, therapists. Anyone want to prove themselves? If you have real faith in your methods, I'm here. If I get a sustainable improvement, (say, 50% improvement) I'll pay twice or three times as much, and I'll recommend twenty friends. I'm open.


Anonymous said...

Ah, C, you are more benevolent/tolerant than me when it comes to these therapies, I firmly believe that anyone who improves greatly after such treatment does not have the same illness as me . . . all these people are doing is playing into the hands of the CBT witches, those charming writers of the proposed NICE (National Inst. Clinical Excellence) guidelines on ME/CFS. I'm sure these sessions can lift your spirits, but they *cannot* undo biochemical abnormalities. That is why no one will offer you a no win/no fee treatment.

Ciara said...

Well put NMJ. I sometimes wonder about these rare stories of 'miracle' healings in cancer etc, but I agree you don't hear about miracle cures after neurones have been damaged - by viruses in our case. I remember my brain scan from Dr Chaudhuri had a big chemical spike on the print out, indicative of inflammation and damage due to infection. Meditate that away...

Amy said...

The people who peddle these therapies always say something like "of course, ME is a real physical illness", but I notice that you never hear them offering to "cure" MS, cancer or anything else. If you could cure ME this way you could cure any/every illness - hell, let's do away with modern medicine altogether! And the whole idea that if you don't get well with them it's because you're not motivated/don't "believe" enough is ridiculous/insulting.
And I agree with NMJ. I'm trying to refrain from ranting about the NICE guidelines ( I was involved as a patient in a so-called consultation exercise during their development, and the whole thing has been actually horribly un-scientific/irrational) but will just say that they're not really about ME at all, but some vaguely defined notion of unexplained "fatigue" - perhaps what the mickel/lightning/hypnotherapists have more success with?

Mo said...

I guess I'm one of the evangelists who's found something that works for me and firmly believe in all the mind/body stuff. After all, I've gone from housebound to taking my first foreign holiday in 17 years. I'm not cured but my quality of life has improved no end. And it definitely wasn't just fatigue I had but a horrible form of ME with all the intolerances, allergies and neurological symptoms. The therapy I've found works physically on the body but a whole load of other stuff comes into play. Just being controversial! If someone had told me a couple of years ago that I'd improve so much through breathing I'd have laughed in their face too.