Sunday, 21 October 2012

Fibromyalgia, CFS and ME Recovery

Today attended the annual CAMexpo at Earl's Court in London. The usual mixed bag - some good some not so good. Luckily the first workshop I attended was a good one - run by two women who have recovered from ME  and Fibromyalgia respectively and gone ahead and set up a company to train therapists in how to help sufferers recover. They call it the Chrysalis Effect and it seems to be based on the 8 pillars of health they they feel contributes to the disease when out of balance. This is not news to me although I've not heard of it in this context.

A couple of years ago I also set up a company with a friend and we were going to sell online health and wellbeing training. We called it Intelligent Health Solutions.We had designed an online questionnaire and wellbeing training based on 7 pillars of health which were slightly different but shared some overlap.  Ours were things like hydration, nutrition, emotional health, exercise, personal responsibility, relationships etc. Our company sadly never made it off the ground but the lessons I learned from that experience are vast.. The Chrysalis Effect's 8 pillars of health relevant to fatigue syndromes (of which Fibro, CFS and ME are the most common) are; nutritional support, thyroid and adrenals, emotional health, envrionment, lifestyle and pacing, relationships, movement and life purpose. You can see the overlap very clearly. You cannot 'quick fix' your health particularly if you are already suffering from one of these conditions - it is multi-factorial and needs a multi-factorial approach.

One of the directors of Chrysalis Effect, Elaine Wilkins, has set up a not for profit support group dedicated to recovery from ME, CFS and fibromyalgia www.mecfra.org. This and the website set up by the former dentist and naturopath Alison Adams www.thenaturalrecoveryplan.com are doing similar things - showing you there is a way to recover but it is about tackling all the issues that contribute to the illness via natural means and not looking for managing the symptoms or the quick fix pill/treatmet. this one takes a complete overhaul of your life to do properly. tinkering round the edges with a few supplements and a bit of reflexology, etc aren't going to do it. She explained that eventually people stopped looking for an external solution and began to look inwards as to what patterns they had developed in life contributed to the illness. Common ones are; childhood trauma, unresolved grief (for instance she had lost a child and had gone straight back to work 3 weeks later), an A-type personality with it's perfectionism and work drive, putting everyone else first before yourself and never saying 'no'.  Finally and probably most importantly are you in the wrong life? Have you got the wrong job/relationship for your authentic self. Are you stuck doing something you don't believe in any more but are too afraid to change. Sometimes it is easier to stay ill than to tackle these issues. Elaine is now a life coach and she recognises that there are secondary gains for staying ill - if you can't have security (the illlness takes that away from you) then another of the 7 human needs is significance and the illness can give you that (see Carolyn Myss's book 'Why people don't heal' you become the sufferer and lose the person.

One other piece of good advice they gave me was 'stay away from the online support forums' as they actively seek to support the illness not the recovery and can be quite negative. This concurs with what my clients with Fibro/CFS have told me. They can take over your life and support the very thing they should be tackling. Sounds like sensible advice to me. When they tried to run a workshop to show others how they can recover they were told they could not advertise in the ME magazines as they cannot claim to 'cure' anyone. Well all they are trying to do is show how they cured themselves. It truly is amazing that groups that pupport to want to help actually hinder because they are fearful of backlash and litigation. Elaine said that even some individuals had written to them on Facebook callling them witches and saying they should do it for nothing if they really cared. The vitriol is scary.

So, along with Alison Adams (previous blog) that's two Fibro suffers who I've now come across who have recovered. They each claim to know many, many more. (Check out www.lizdyde.com for postive fibro support). So it's not incurable.. which is good news for those of my clients who suffer from it and good news for me as I want to set up a clinic whereby we can promote these ideas and offer treatments that take people away from the negative messages they receive from the NHS (e.g. 'you'll never recover') and allow natural healing. So, that's all for now - will be doing further training with them in November so will report back then.

A revolution in healing..

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