Firestormm its not about criticising you personally, I am so glad you have improved physically and mentally from where you were. Any improvement in a ME patient is to be celebrated.
My argument is with the staff who are providing the services, why aren't they coming out strongly and saying to the people who hold the money and power, this service may improve the lives of some but its not the way forward with regards to diagnosis>cure these patients need much much more.
But they don't they're all glad to have a job and in the cosy world of the NHS they all stick together and don't EVER critisce or complain. Thats why we're stuck and that type of service is all we'll ever get, even you can see its not enough.
It makes me so angry, what we need is a whistleblower extraordinairre in addition for the MRC to take biomedical research into this condition a priority. The anger is not aimed at you.
Thanks. Bold: I do not know. I would like to think that as Carol helped write the Guideline (although I know she wasn't happy with all of it but am only aware of some parts she didn't like), and is - as was said - a member of BACME, that word is getting out. I don't know that it is but I'd like to think that it is.
I think that sometimes we are reading 'science papers' and taking these things literally as being representative or a blueprint of what happens in practice.
Look, even if the OT and psychologist (who I have yet to meet) can help me with my general (don't laugh) loss of confidence, my difficulty in managing my own and other people's expectations as well as helping me organise my new home to better take into account my physical and sometimes sensory limitations - I will count that as a plus.
My approach to all the help (good or bad) over the many years has been 'suck it and see'. If I can take something from their efforts and apply it to my life with all this crap then I will. Whether or not any improvement in my 'quality of life' borne as a result of their help appears to impact on my disability is a mute point when we don't know enough about ME. Not like we can test for ME before and test for it after these interventions.
Maybe one day we will be able to and I look forward to that with some trepidation as well as enthusiasm.
Without wishing to sound like I'm knocking the medical service we receive here in the UK, they don't actually offer anything that someone with a bit of common sense wouldn't have already worked out for themselves. You make it sound wonderful, and to some it is. However I'd much rather they spent all that money on some proper research into the illness.
Actually scrub that, I am and do knock the service we receive, it is rubbish and a complete farce.
When there has been nothing offered before, even something that you or I might after several years of struggling on our own, find 'common sense', it can appear to be like an oasis in a desert to a person who is lost
But more importantly than that it is the understanding and belief that for me would have been priceless had it been available from the start.
I do NOT make it sound wonderful. It is what it is and the experience will be completely different for each of us. Some will take nothing from it and some will find ideas and practices that are new to them and actually do help make a difference. Again, it is for me the whole belief and knowledge that this time round there is something in place to provide the support I have never had before from the NHS. And when I crash I can pick up the phone and ask for and receive help.
There has been a movement in the past - probably still exists - that wanted to see all ME Services closed down and for the 'saved money' to be handed over to research. It is one suggestion. A ridiculous one I happen to think. To leave people with nothing would be to wind back the clock. Some people though feel rightly or wrongly that they have nothing. No help and No support. As I said perhaps Cornwall is unique but that doesn't make our situation down here perfect. Far from it. Look how long it has taken for me to get the OT to honour the referral! But things I hope are changing for the better - at least in terms of funding and reliability - down here in the far south-west.
Patients like me will still - even if only in the back of their minds - expect something significant to come from this help that is offered, and - to return to the post topic - I do blame at least in part the whole business surrounding PACE. I do not know the extent to which GET for example is part of the Therapy offered by Cornwall - yet. I get the strong impression that 'activity management' is at the core of what it is they do for anyone - whatever their categorisation - with this diagnosis who comes to them and is accepted as being in need of help.
I want every single person with ME to be offered without needing to ask the kind of pharmacological help that I have had to fight at times - at others not - to get. I also want everyone to be offered this kind of approach in terms of therapy and support from a dedicated team of professionals. NICE has some things contained within it that I personally would rather was downplayed, and others I wish were more prominent - pharmacology being one of them. But at least with have a Guideline to be used when advocating for service provision.
But there are things in NICE that I want to work with and one is for research into patient outcomes to be carried out on the ground. This as I have said several times before might provide us with some knowledge of how people benefit and a better understanding of what these interventions comprise on the ground.
I am not scared of GET or CBT although having been on forums now for a couple of years I can see why some people might be. It is the application of help and support regardless of who the professional is - and that professionals competence and understanding - that to me is far more important.
As a patient I can always say 'No'. As a patient I work with these professionals even the ones I don't happen to like very much and it is hard. Bloody hard. Because no therapy or treatment or drug means that I don't have to do things for myself.