We patients are extremely willing to do anything we can to help, and we are more than eager to participate in studies and share information as we can. But how are we expected to help get universities, hospitals, and research institutions more interested in CFS biomedical research? Most of us face a tremendous struggle simply trying to get appropriate medical care and support for ourselves in the face of enormous ignorance by doctors, health insurers, and public agencies.
I think this is very good but could I suggest replacing "But how are we expected to help get universities..." with "But how can we help get universities..." to avoid any hint of snark and maybe emphasise the snarklessness by adding at the end something like, "We'd be very grateful for any advice you have on specifically how we can be helpful."
Great word, "snark"! We don't have it in the UK (but we do now!).
The original question to email these guys with was, "what have you done for people with ME/CFS today". Why not ask them to start a daily online record of what they have actually done that day? Of what tangible progress they have made?
I also have concerns about an endless barrage of emails on the one hand, and being ignored on the other. But I think they can easily state their targets and do a daily or at worst, weekly progress update on what they actually have to show in terms of progress. That way, they are on the spot and know they are; and if they start to fall short, another campaign could start. Best of both worlds.
this is a great idea. why can't they let us know what they are doing for us. we pay taxes. we are ill. we deserve to know what types of actions are being taken to REALLY help us.
i don't know what we are thanking Dr, Mangan for...a name change...that does NOTHING for me. I want research and clinical trials so i can start treatments that will allow me to recover some of my health, Thanking him for a name change feels like thanking your assailant when he stops beating you....extreme example, but that's what i think.
i do whole-heartedly respect bob, rivka, charlotte and all the others who have organized this advocacy....so i do not mean to be disrespectful to them...but i think we need transparency from the govt. on what actions are being taken to really help us...not just a name change.
everything in this disease is a big mystery...there is never any easy, open access to anything: good drs, treatment, current research, etc. i feel like i am constantly searching for the golden key to unlock everything.
oh one other thing.....will they really not help a group of seriously ill patients who may be harboring a deadly, transmittable retro-virus because we annoy them or they don't like us. if that's the way they do things they (the govt) are f...ing :Retro mad:crazy!!!!!
A couple of comments.
I've read through the comments to date, many seem pleased that Mr Mangan is a pleasant person. So is Professor Wessley! Tom Hennessy met him some years ago and was so favorably impressed he invited Wessley to write for his web page. Wessely demurred on the basis that it might stir up too much controversy. Point is we can only judge these people by their actions. That WPI has submitted grant proposals to NIH and been turned down does not auger well. Because we cannot know what applications have been rejected, we cannot determine ourselves how good or bad they are. It's a perfect answer, on his part. But knowing that WPI's grant proposals have been rejected doesn't fill me with confidence.
But..by all means we can seek out universities, hospitals and research institutions. There is a vast number of promising research that hasn't been replicated. We don't even need to come up with new areas which will then have to be replicated.
"Thank you for your notewell do our best to support the biomedical research that will lead to a proper diagnosis and cure for this terrible disease! However, we need more strong applications from universities, hospitals and research institutions! Please help us help you. Thank you for your support"
Dennis F. Mangan, Ph.D.
Co-Chair, Trans-NIH ME/CFS Research Working Group[/QUOTE]
I'd be happy to let you borrow my bullet points (and please feel free to add any of your own)
The only thing I would change in actually sending this along to Dr. Mangan would be to remove the snark from the last bullet point. Amongst ourselves I have no problem being snarky, but I wouldn't direct the snark against a total stranger, especially one that might be new to the ME/CFS debacle and doesn't fully know the history or how much patients have been denigrated in the past.
Actually, I rather like the snarky comment (though that's not my usual style). Says it like it is.
As for "might be new" and "doesn't fully know," well, if the man hasn't had the sense to educate himself on the history and issues of his new responsibility, and if he hasn't bothered to read prominent patient websites, then he is an idiot. And I seriously doubt an idiot could get to his level in government...
He deserves to be treated with respect and politeness, like anyone else, but he was brought in for damage control so there is no need to sugarcoat things now. Letting him see our frustration with the lack of progress and our willingness to help (eg, be lab rats) can only be good. If he is more than a "spin doctor," perhaps he can channel our energy (or whatever you'd call what we've got ) into good, clinical research. (CLINICAL TRIALS NOW!)