There is a book that apparently ME/cfs folk think is very good and it’s going to be free next weekend You can get it HERE in USA and HERE in the UK It’s also available on Amazon Library if you have a kindle and Prime membership.
I’ve not long got back from my chiropractic appointment. I know my GP doesn’t approve, but it really does help me. It’s not a long term solution for someone like me, but no one has pretended it is. However, just having those few days, sometimes up to two weeks where I am not so shaky and trembly; where I can stand up without tipping over, swaying; where my vision is clearer (not sure why that happens, but enjoy it while it’s there); Where the afternoon crash is not such a nosedive and the pain is less, down to 1 or 2 on the pain scale. It’s nice.
Today he gave me extra needles and he adjusts the treatment to how ill I am. I appreciate that a lot.
There are a lot of snake oil salesmen out there. More so thanks to the shocking lack of tests, treatment or basic care offered for ME/FM and dysautonomic patients on the NHS. I have come across many patients who have spent money they couldn’t afford or didn’t have trying to find some relief from all this and they are still very sick. I am fortunate that I have found some help with chiropractic treatments.
A petition was opened asking for the knighthood given to Simon Wessley to be removed. Wessley has done a great deal of work in the UK which has made sure patients are labelled with “false illness beliefs” and the “it’s all in yer ‘ead” attack most of us have faced. Thankfully the biomedical research is still happening in America, Australia and Denmark among other places. Lots of new answers are coming forward which explain why we are so sick, and there are some hopeful drugs out there. Amligen is still in play.
Wessley has demanded the petition be closed and so it has been. Those who set it up are hoping to find some free speech elsewhere. While I personally think the shutting down of a legitimate petition childish and rather nasty when you consider the lack of voice patients have, all is not lost. You can read some of the comments from the petition here.
I tend not to believe petitions do much good. We had a few going to support the intrinsic rights of families to home educate and the Labour Govt made it clear they couldn’t care less about rights or public opinion, unless it suited them. The same still goes or people like Wessley would be disciplined not rewarded.
Wessley’s GET made me much much sicker today than I would have been if I’d been given the Nancy Kilmas advice of bedrest. If I had rested in the beginning, as many patients who are in remission now did, I might be (though it isn’t certain of course) in remission. I read the research far too late.
So if you are reading this because you are newly ill or newly dx with one or more of these hideous diseases, don’t do what the doctors tell you until you have read the research and done so with great care. Some of the stuff is difficult to understand, but some of it is clear and straight forward. There are some great people out there who understand the complicated stuff and are willing to explain it.
Take charge of the disease, don’t let it take charge of you; and sadly you will have to treat what doctors say with extreme caution.