Dear Claire,This is in response to an email I sent about fibrofix and it extends to the recent spate of twitter requests I get from alt therapists and cure merchants. I am a little annoyed at the FMAUK for not having the balls to do what Ben Goldacre does http://www.badscience.net/ or to bring the latest research and advice to the people like http://www.fibroaction.org/ does.
Thank you for your e-mail. We at FMA UK always tell people that we don't recommend any treatments and point out that what might suit one person does not necessarily suit the next and anything that is expensive is to be thought about carefully. One of the problems we have is that occasionally people do find these things be they drugs, drinks, creams or therapies helpful. The best advice we can give is that there is no cure at present. I think from a legal point of view it would be very difficult to do anything about them en masse and we at present can only work on an individual basis as people ask us about these remedies.
The NHS look after me well, I have gotten back a lot of my life on the physical and mental support I am offered (from medication to CBT and hydrotherapy) I feel that these quacks are preying on vulnerable people (especially those in the USA) or people who's needs in the UK aren't met. FMS cannot be cured but it also cannot be helped by quick fixes.
I am still fighting it daily and have for 3 years now, with meds, diet and exercise, it's hard and sometimes I lose the battles and it seems there is no hope.
But there is, it has to come from you though, if you aren't happy with your dr's advice, let them know, if your FMS symptoms are too much, let them know. Keep at the stretches you got given by the physio last year, keep at the CBT techniques when you feel hopeless, keep asking questions and don't be afraid to ask them. That is what fighting is.