Just in case anyone had misinterpreted me, I'm not telling anyone that they can't do anything that they want to do. Along with an earlier comment about 'policing the internet' I'm a bit worried some may think I'm promoting some authoritarian response, rather than a desire to have an open discussion about these issues.
http://forums.phoenixrising.me/inde...rview-with-ron-davis.51891/page-6#post-858559
Yet you suggested to Dr. Janet Dafoe to edit her post because you were worried, and you told everyone to be cautious. She and Dr. Davis have luckily decided to keep the post up. I know you would never force anyone to keep quiet, and I have no doubt you are doing what you think is the best for our community, but you have to understand that you and others are putting pressure on people to keep quiet.
Charles Shepherd and Tom Kindlon both said that they'd had quite a lot of contact with a journalist looking at child protection issues and that they thought there had been some misunderstanding. I thought it would be sensible for Janet to edit her initial post in order to inform other people that there may have been a misunderstanding. What do you think I wanted her to keep quite about? When I gain additional information that could be relevent to something I've posted, I'll often try to edit it into my easrlier post, particualarly if, like in this instance, it was something that had ended up getting wider attention.
When two respected people have said that they think there's probably been a misunderstanding, that seems a sensible reason to be cautious to me.
I am going to repeat again, I support and have alway myself kept a cool head, stuck to the facts and kept emotions out of it.
But the truth is, considering the realiy of the situation we should all be lying down in the streets and blocking traffic and sceaming at top of our lungs. There are 20 MILLION horribly ill people around the world and no one even knows we exist. All the institutions that our countries have set up to help people like us have failed us. We have no treatment, no biomarkers, no support. And in most cases we have abuse and accusations leveled at us.
Things are terrible, and that's why it's important that we do what we can to try to improve things.
Being polite and patient has brought us nothing.
I'm not polite or patient, but nonethelss, I think that making exaggerated or unfounded claims is usually worse than nothing.
edit: This is something that annnoys, conflating concern about people making claims that cannot be defended in open debate with being timid, or having some undue concern for the social niceties of politeness. I want to bring the quacks down as fast as possible. Making unfounded or exaggerated claims makes that harder to achieve. It should be avoided not because we're polite and patient, but because what we're trying to a rude overthrowing of power as quickly as possible.
Every time we are afraid to express our emotions and opinions they win.
That's a very broad statement, and I don't think it's necessarily true. Surely you think it's possible that there are times when it could be wise for a patient or advocate to not just express their emotions?
I am 100% sure have we actually in the past been obnoxious and loud that we would have much more funding today. But we are not. I am proud patients have kept their dignity throughout all this hardship, but when we are afraid to express our emotions and opinions which are justified and are not even stepping over the line we are failing everyone.
Some people have been too abnoxious and loud and some people have been to deferential and quiet.
Advocacy is gaining momentum, we have patients sacrificing their health to reach politicians and journalists, we owe it to them to stop being cautious and be loud - If Dr. Davis didn't like journalist's attitude he has a full right to say it.
He has a right to say it. And who said otherwise? From what I've read, it seems that the patients sacrificing their health to in ways that have moved things foreward have been cautious and rigorous in order to be effective. The patient who won the recent Tribunal case left his arguments against an earlier finding that he made a vexatious request for information, and to me, this seems like exactly the sort of approach to advocacy likely to be useful for us:
https://www.whatdotheyknow.com/request/timing_of_changes_to_pace_trial#comment-59096
[edit: When it comes to patient advocacy, I think that most people would recognise that Matthees has done pretty darn well. The above document he posted was not part of a legal proceeding, but just a comment he posted on WDTK to explain his position. I'd really encourage people to read it, thin about the way he writes, think about the points he focuses on, and then think if there's anything that can be learnt from it. I feel that I've learnt about how to write more effectively from reading his work. He doesn't make exaggerated or unfounded claims, and I don't think that this is because he's overly concerned about being 'polite' or 'patient', or wants to stay quiet and avoid a fight. More likely, I think he's just thought carefully about the best ways to make real progress. We cannot hope for every patient to be as effective as Matthees has been, but I do think it's worth people trying to understand why his approach has been successful in such an important way in circumstances where it has been so difficult for advocates to achieve anything of value.]
No one, absolutely no one, will see an anonymous post on an open forum accusing someone of being a criminal and think that 20 million patients are not worth helping. They might say it because it fits their narrative, but I guarantee you they won't think it.
Lots of researchers are already using claims about the heated and adversarial nature of the debate around ME/CFS and PACE as an excuse to avoid addressing advocates concerns, even thoughthey write things elsewhere which imply that this is exactly the sort of thing which would concern them. I'm not saying that one single post will suddenly make researcher think that 20 million patients are not worth helping (did I write something to give you that impression? - what?) but I do think that we can post things that are likely to do more harm than good, and that it would be best if we tried to avoid doing that.
This forum is for people with ME it can be uncomfortable at times with the forcefulness with which opinions are expressed. Especially as someone who has only been in ME world for the last 18 months I am still getting used to this. I did struggle with this aspect of PR at first.
...And people are entitled to be angry and express that anger within the rules of the forum.
...So I begin to understand the motivation. This medium is about exchange between ME people and although it can be viewed by others they don't have any right to see it as anything other than an online forum. It's not a formal communication like a letter or a petition or a press release on behalf of an organisation. Not sure this adds anything to the thread just me thinking aloud about how I feel about it and recognising that we re not in any professional or representative role here so shouldn't be held back from expressing ouselves. Especially as this is for me and I suspect for most of us the only place where we can talk about ME issues with our peers since friends and family don't understand.
Wish I could use a few swear words though at times
I think these are all valuable points, both about the injustice of the way people's pain and anger can be judged by others, and about how even as a patient, you found the way some people wrote here uncomfortable whne you first joined. That is the situation we're in.
