Tuesday, May 08, 2007

Radio news

Radio Scotland contacted me and invited me to take part in a half hour documentary on my 20 years of living with ME. Previously I'd have agreed on the spot, but this time I was unsure, all because I am still having Mickel Therapy sessions and finding them of benefit. In the world of ME politics, this is a very strange place to be. The mind/body therapies are a minority subset and those in the mainstream can't see how they could possibly help an illness as real and severe as ME. I know, oh yes indeed, because I used to be in that mainstream, flying the flag. No one is a surprised as I am.
Anyway, I agreed to do the programme, focusing on my longer term experiences and will record further interviews today. It's amazing how articulation and grammar try to jump out the window as soon as someone points a spongey microphone at your chin. There's a lot to cover as twenty years is a fair hike. The programme won't air till sometime in June and it'll be online too, so I'll post details when I have them.


Mary Anne said...

I've been reading your blog for awhile and enjoying your posts very much, and now I am de-lurking to say I'm glad you agreed to take part in Radio Scotland's program. If anything you try gives you some relief after 20 long years, I think you should rejoice in that and share your experience.

A few years ago, Laura Hillenbrand (Seabiscuit author & long time CFS sufferer) admitted she was seeing a therapist and trying CBT. She had found after so many years of illness (19 or 20), she needed help to cope with the symptoms, both emotional and physical. She commented that she was feeling a little better from her therapy; not cured, because she still had the vertigo and physical exhaustion, but better able to cope with the emotional impact of long term illness.

Ciara said...

Why thank you Mary Anne for this supportive comment.

I used to listen to a song I loved, with the chorus of
'Let me tell you 'bout Mary Anne...stop the fear that your carrying.' It was a free compilation cd so I've forgotten who sang it.

Hope you enjoy the programme when it's on.


sofamum said...

Hi Ciara, I'd like to add a me-too to Mary Anne's comments. Well done for having the guts to do the Radio documentary and please let me know when it's on. I hate the polarisation in the ME community over the mind-body therapies and just wish more was known about this damned illness so we could understand how and why things like Mickel Therapy do help some people. It's only the criminal scientific and political neglect of ME that is producing these controversies that divide us.

cusp said...

I agree with Mary Anne. If you feel the Mickel Therapy is doing you any good then 'good on ya'. I've been diagnosed for 7 years but had ME for much, much longer and if I could find a Mickel Therapist where I live I might try it too -- I've tried everything else.

Personally I'm convinced that ME/CFS is primarily a physiological illness but also that all illnesses have a psychologiclal component - in as much as we have a body and a mind and they are intertwined and one can influence the other. I just don't buy into the banner waving of the 'trick-cyclists' or the equally entrenched position of some of the PWME who insist that any suggestion or offer of help on a psychological basis is tantamount to an insult.

I'll keep reading your blog with interest.

Ian said...

My partner is one of those people who is having some success with a bodymind treatment - in her case, Reverse Therapy (RT) which is similar in many ways to MT. She is greatly improved, although not "cured". cusp, you might want to check out their website, maybe there's a therapist near you. We had to travel 90 mins to get to her appointments, but it was well worth it and we actually came to enjoy the journeys, I think because the overall experience was so positive.

Anonymous said...

Hi Ciara

I feel very sceptical about these mind body therapies but would really like to hear your experience of Mickel Therapy.

I have been reading your blog for ages before you started having Mickel Therapy, therefore i feel more trusting of you and your experiences of this.

Usually the only stories i hear are in newspapers, about people with ME who have been cured using TLP/RT/MT and are now therapists themselves. I have encountered these stories very often when doing a google news search for ME, and subsequently find it difficult to accept them as anything other than free advertising.

I find it difficult to understand why you are discouraged from talking about the process. If this treatment is not some kind of pyschological placebo, what difference would it make to its efficacy?

However much i doubt these therapies, if i thought Mickel Therapy would help me overcome this illness, i would try to find enough money to do it.

Good luck and best wishes