OK, now I am just confused
Are there two threads on this? because I don't know if I have got mixed up and posted in the wrong one? I am sure this happened last week too with two that were so similar, it enough to send my ME brain into a spin.
Anyway I think what I wrote was meant for this discussion..... maybe
so I will post it here, sorry, please ignore if you have read it in another thread somewhere.
When I first heard of this campaign, I thought great, an inquiry into the abuse and neglect of ME patients is so badly needed. There needs to be some sort of recognition of the harm done, in order for institution and individuals and the public to learn from it and move forward in a better direction and make sure this never happens again.
I would like to see justice for many ME patients who have been so badly treated and this looks like a step in the right direction towards getting that initial vital acknowledgement of what has happened and hopefully address the current BPS model that is so harmful.
But upon reflection and on reading through the comments I do wonder now if this is the right timing and the right person to do this.
Timing is crucial and I am not sure if this is ultimately the best time.
I think given another year or two of research hopefully things will have progressed to the stage where more is known and the biomedical facts are undisputable.
To many of us, that appears to be the case already, but to those outside the ME world, the BPS brigade are going to continue to argue will full force that it is not indisputable and there is an alternative theory and understanding of ME. They will continue to do this until their situation becomes absolutely untenable. The difficulty is that they have the use of the media and they will use it just as they have before.
We are the weaker party, we have to think tactically, strategically and longer term.
Imagine how they will portray a campaign led by Sarah Myhill.
Her treatments may help some but not all, but they will portray her as some hippy alternative quack, they will use the media to discredit her and her practices and in doing so discredit the campaign. The first image the media present will stick and could take years to undo and of course, it will be whatever image the BPS lot want to portray to protect their interests.
It is unlikely that if this fails, we will be abe to start a similar campaign in the near future, MPs etc won't want to give it another try, the public will be tired of it as will health professionals.
I like the idea of an enquiry, I think there should be one, but I think we would have a lot more clout and make a lot more progress if we wait a little while until evidence is unquestionable and the people who have dictated the narrative for so long truly have their backs firmly up against the wall.
I also think a campaign led by charities and other organisations would be better than 1 single doctor in private practice. I think her book etc should be out of it all together.
There is enough materials to draw on to support our case without resorting to the book of the person who is leading the campaign. I just think it makes it very vulnerable to criticism and accusations.
We also know doctors lives can be made hell when they take a stand in the world of ME. She is very brave and courageous to do this, and I admire her strength and courage to do this and her intentions, but I think there is safety in numbers and also influence and power in numbers, a collective of organisations and researchers and clinicians acting together would be better than this approach I think. I also think the push has to come from mainstream medical research and practice rather than the fringes.
But maybe I am just being critical because I have an MP who is useless and would not give a shit, compassion and real genuine concern does not appear to be in my MPs nature unless it comes to business interests.
