I want to thank everyone for maintaining the respectful tone in this discussion, it's much appreciated.
Maybe this thread should be under "alternative" treatments?
You could be right there. It's not particularly news, as such. General ME/CFS News tends to be used as a bit of a catch-all bucket, I think, and I sometimes wonder whether we need one or two new categories...suggestions on this would be welcome...
Do you have any studies that show this?...I guess it depends what source you use. My personal choice are articles and citations that use science based medicine. :>)
I'd like to throw my oar in here for a change, if I may...I don't often do so, as a moderator, but it's nice to be able to comment in a purely personal capacity occasionally...and what I'd like to say does seem to me to go to the heart of the difficult arguments we sometimes have here when we discuss 'alternative' and unproven treatments.
The problem I have with this approach, Barb, is that it appears that most of what counts as "science-based medicine" in the UK, based on criteria like NICE guidelines and the UK psychiatrists' own Oxford Criteria, is not even studying ME, or even CFS, but 'chronic fatigue', and so it certainly has very little if any relevance to me, and probably isn't worth the paper it's printed on. Then you have other studies, using proper criteria, which good though some of them are, are mostly un-replicated because seemingly nobody can be bothered to try, and themselves are too poorly-funded to be counted by the UK as "science-based medicine", and while their findings are relevant and interesting, there are far too few of them and their practical implications for treatment are minimal.
So in the absence of almost any decent science studying my illness which is recognised as "science-based medicine" by the authorities here, and in the absence of any credible treatments on offer from the mainstream, and with little to no apparent prospect of any reasonable level of scientific study of my illness happening in my lifetime, how can I rationally restrict my treatment options to "science-based medicine"?
If there was any significant level of science to point to, then of course I would prefer to follow that. But with the state of the science so distorted in this country, the definitions of my illness so mangled by a cynical game of Russian Dolls, and with nothing on offer from mainstream medicine, my only choice is either to sit back and accept that nobody gives a damn and there's nothing I can do but rot away, or to seek out the most plausible alternatives.
So after more than 10 years of illness, that's what I did, and after studying the terrain I opted for Dr Myhill's methods through a local physician - and after a year or so of detox saunas, targeted chemical avoidance, supplementation with B12, CoQ10, Omega3, L-Carnitine, etc. I had recovered so dramatically that I'm still able to sit here writing this 5 years later.
These 'detox' treatments are often maligned as having an insufficient scientific base - purely because there's not been enough high quality research into them, of course - but do I give a stuff about that? No, because I tried a wide variety of (to me) the most plausible 'alternatives', with an open mind, followed the evidence of what many other people told me had worked for them, took a gamble on something that wasn't yet scientifically proven, judged the success of each treatment protocol based on my own experience, and experienced the same dramatic results that I had heard and read about.
Waiting for 'science-based medicine' is all very well, but for most of us, a decade or two of (at best) useless advice from the mainstream system is enough to prompt us to consider alternatives. Yes, many of us spend a huge amount of money and get nowhere, and that is a very bad thing and yes, quite often exploitational - and it sometimes leaves those who didn't yet find a solution that worked for them with a lot of bitterness and anger at having wasted so much time and money for no return. But unless and until the mainstream "science-based" world pulls its finger out and starts studying us seriously, using proper criteria, and with real money and intent to understand and solve our problems, then the "science-based" world is completely unrealistic and hypocritical if it expects us to stick only with what it has to tell us. If you are offering less than nothing, you can't expect your customers to continue to accept that you are the only voice you should ever listen to. We turn our backs on the mainstream with great reluctance and desperation, and the world of mainstream medical science has nobody to blame for this rejection but itself.
I'm still only partially recovered, and left with bizarre immune symptoms and permanent elevated lymphocyte counts which nobody can explain. I'd love to be able to sleep in a bed again, or wear normal clothes, but nobody from the NHS has a thing to offer me. So maybe, if I can scrape the money together, I'll try the next set of recommendations from the doctor who made such a huge difference to my life - which included getting my mouthful of mercury fillings taken out and replaced. Her advice may not all be entirely science-based, but in its favour, it does seem to actually work for a whole lot of people, including myself, and these days I consider that to be as good a quality of evidence as anything else that's on offer to me.