If M.E/CFS affected people want to operate in a world of sophisticated and developed advocacy, then learning from the professionals is a good place to start. But actually I think the abiding arguments that have been made through this thread, are that effective advocacy is not to be the ambition but rather it is the enactment of advocacy in a Second Life type simulation where the consequences of actual engagement can be avoided in preference for confirmation present certainties.
Hi IVI, the implication of your statement is at conflict with your stated position that you have made plain over time. Your argument, and feel free to disagree with my summation, is that we are not a united community with a unified goal using adequately developed plans for advocacy. Yet here you are complaining that we are debating advocacy, creating a basis for consensus, and learning about options. You can't have it both ways.
This forum, and by that I mean PR, is a platform for
learning about advocacy and the issues. Its not the advocacy itself. You have no idea what goes on behind the scenes. Are you aware that advocates who act in the real world, and who also post on PR, spend a lot of time planning and doing that is never seen on PR?
We
need to discuss advocacy. Discussion is not enough, in that I agree with you. However we can't have anything like consensus, focus, goals, without such discussion. Its
mandatory.
"learning from the professionals" ... which professionals do you have in mind? How many of them have experience in advocating for something like ME, given that there isn't anything like ME? Our circumstances differ from any other advocacy situation. We are not the MS community, nor the HIV community.
Are you aware that many of our advocates have sent hundreds to thousands of emails, letters and so on? Some are targeting professional bodies like medical associations. Others are involved in coordinating with government. Alliances are now forming between ME and CFS associations. We are lobbying government via such an alliance, at least in the USA. At least five of us I am aware of are writing a book on these issues or have done so. Others write articles and publish papers. Some make videos. Others organize and run large advocacy organizations. Many sign up to be medical research subjects (I have several times).
Standard approaches to advocacy used in other disorders and vaguely similar issues will fail, in my opinion, because the differences in circumstances with ME and CFS are just too large. We need our own path, whatever that may turn out to be. We have to figure that out. How can we do that without discussion?
Its bioscience that will get us a cure. Advocacy can support that, can support patients, can teach and educate, can oppose negative influences, and can assist with the rolling out of solutions when a cure or effective treatment is known. Advocates are only part of the solution.
As to identity, I chose long ago to be public. Many know my real name, its appeared in numerous threads here and elsewhere, I sign my real name to newspaper comments too, just as I will to this post. I made the choice of that risk some years ago: to effectively advocate you can't hide behind pseudonyms, however that doesn't mean you can't use pseudonyms in order to engage in debate on patient forums. My educational background is also public and includes a B.Sc. and a B.Inf.
So why do I use alex3619? To those who know more about me than I am willing to discuss here it is obvious. Its a technical reason.
To be clear, I do understand why many want to use pseudonyms. There are good reasons given how many ME and CFS patients have been treated.
As an aside, Amazon has finally decided to send a copy of Angela Kennedy's new book, or at least says its now pending. I will review it on PR.
Alex Young
aka alex3619