Discussion in 'Action Alerts and Advocacy' started by Tulip, Jul 10, 2011.
You go for it. Mention to them about the bond uni study on nk dysfunction as a diagnostic marker for cfs. newcastle study was only 17 years behind the bond study, hopefully they realise that cfs/me needs more research.
Thanks heapsreal. It needs to be well planned and thought out that's for sure.
I wonder if I should give them contact details of doctors such as prof hooper (who is very out spoken on this issue) And dr hyde...hmmm.
Dr deed in bris and dr lewis in melb?
Yeah I was thinking of those two as well.
Hi Tulip, I sent an email to 60 Minutes several years ago, and I was totally ignored. I would suggest two things. First, send it via hardcopy snailmail, and second get as many Aussies to send a letter as possible, preferably in the same week. Maybe we should be thinking of this as a campaign. I have trouble sending a physical letter, but there may be ways around that - or some of us could send it via email anyway. On the email side, I don't recall whether it was real email or one of those fake limited ones they put on websites, with word limits and so on. Bye, Alex
Thanks Alex, yeah email never goes down well. I was planning to send it snail mail and as a thoroughly researched info pack, so I am not going to rush it because I really want to give it the best chance possible for all of us!. I am going to take several weeks to get it all just right.
I'm not sure if a campaign is the way to go? It could backfire with them being really annoyed? I am not sure.
Hi Tulip, how about this: first we try a single letter, then if several months later it does not work we revamp the information and send them a flood. The disadvantage of a campaign is that it looks orchestrated, which of course it is. The advantage is that it shows a lot of people are interested. Advocacy is a long term game. Bye, Alex
Sure would be fantastic.
Don't forget about the Dr Kenneth Friedman testimony at the SOK.
Might be good to mention the "Under Our Skin" video and also the Burzynski Movie. Just so they understand it is affecting everybody and not just us ME/CFS'ers?
I just sent a email yesterday to Dr Burzynski letting him know ME/CFS patients are experiencing a similar situation with ME/CFS research as the cancer folks. Let you all know if I here back anything.
Dr. Nancy Klimas has published a paper on NK cells dysfunction and high cytokines being a biomarker for this illness. Mine were just that low killer cells and high cytokines. It was posted to PR a while ago.
Go for it!
Sounds excellent Tulip!
Not rushing it and getting it right is a great strategy. They need resource material and one amazing overview of this whole story is Osler's Web which I am reading now, albeit not an Australian perspective. It's a huge book of course and one would have to be very committed to their topic to read it - even though it is quite gripping (up to where I have read so far at least).
Probably a combination of written resources/journal articles, the signs & symptoms, how it impacts people's lives, personal stories, web links, doctors/specialists names etc in your trusty info pack!
Will give it more thought and see what other resources may be pertinent yet succint.
I have just watched the Under Our Skin vimeo posted by Mark and it is an excellent portrayal of this condition AND similar attitudes we are up against. However - Lyme disease has not been considered endemic in Australia (controversial now I know) so it might be better to steer away from that one. Can get too complicated when in actual fact there may be many singular conditions in the M.E./CFS mix which have been diagnostically missed - in which case they ALL need to be diagnosed. Difficult to single one out - apart from stressing the need for thorough diagnostic testing!
I suggest that maybe do it as a group of people putting signature on bottom of all the info, asking to please do a segment on this or including their own Aussie ME/CFS stories with the info which is sent. (Many individuals I know how tried to get ME tv coverage and havent been successful but maybe as a group of different individuals working as one would have more luck).
Maybe if you get together a lot of info on ME and the problems we face eg I think that our doctors not being really trained well in dealing with this illness is a good point to get across.. how are we meant to be getting diagnosed well? or treated well when doctors arent being taught about the illness???. Could we use the media to try to get our medical doctors to be better trained and actually taught about this???
(Ive heard that they arent taught about ME/CFS in university, they'd be lucky to see or read a paragraph on it in their text books) and my own doctor cancelled my medical appointment when he found out he'd have a student doctor with him that day as he didnt want a student doctor there when I was there due to that I was coming in over the ME/CFS!!!...
so hence its an illness that trainee doctors arent learning about either in their work experience or whatever they call it sessions either.
umm maybe collect Aussie patients letters of the bias we get around this illness?? the trouble we have with doctors (which is higher up issue of lack of training) etc etc and send that all in together to try to gain some interest may be a tactic to get their attention which hasnt been tried before.
(if you want any letter from me to include in whatever you are posting to them.. just let me know and I'll do one with whatever area you want me to focus on as far as my own experiences go with ME/CFS .. from the nightmare time i had getting onto disablity and smashing my car and another car due to being forced by centrelink and the job place they sent me to which made me work under threats while I was really too sick to do so,
to the being kicked out of main state hospital unable to even walk out so had to be wheelchaired and was sent home without home support etc etc. To being long term bedbound with my young child as my carer. I have so many different incidents around ME which could be told ).
You need to get people to hear and listen on the obivious facts of ME/CFS before they start to believe or listen to conspiratory stories and knocking the other countries eg English situation and the CDC, I think is far to big to get put out there when we are all just fighting to get ME accepted in the first place.
best luck whatever you decide to do. If someone had the money.. sending Hilary Johnsons book with a group of peoples own ME stories could be helpful. Who knows.. if it looked interesting it may end up being read by someone influencial there. A gentle way to try to get the info out but I do think it is too big an international story for them to put out there even if they believed it (so the best one could hope for is that they are sympthatetic to our plight to do an accuarate story on the other things going on with it).
Ive previously spoken to a reporters of various current affair shows as far as ME/CFS goes. 60 minutes may of been one of the ones I chatted to reporters on phone (I know i talked with one of the current affair shows.. also Ive spoken to reporters from a couple of different news stations).
I like to make personal contact with people before sending in the info.. Ive found most of the reporters usually end up chatting for about 5-10mins and they then ask me to send backing info and links in for them to look over. Last time I contacted tv reporters it was when XMRV news broke, so far thou Ive got the interest some of the reporters Ive spoken to (I think they listened to the breaking XMRV news coming from America after I contacted them) ... Ive yet thou to trigger off an actual tv news story. (I wonder if I would of had more luck if I'd got personal and instead told my own ME story rather then focus on areas of the whole ME situation like I have done in past)
I think we need to wait. We need to get the science clear first, then we do the politics.
XMRV is all up in the air now.
If we get a nibble of interest now, we tell them about XMRV, they check with the "experts" and half of them disagree. That's a dead end. I know Dr. L disagrees with XMRV. What if they check with PAL ?
I think we stand a better chance of getting a science story on Quantum.
They would be more comfortable doing the science reporting even before XMRV is settled.
XMRV should be settled in under 12 months. Then we do the politics story.
Hi gregf, I tried getting Quantum interested too - its worth trying again, and again, but there does seem to be a lack of interest in CFS. We need something to spark interest - and that means either controversy or science. Bye, Alex
PS This delay on XMRV research is also why I have been quiet on Aussie advocacy. There are only two groundbreaking research items lately, one is XMRV and the other is post-exercise testing.
Francelle, I agree oslers web is good, but I can't imagine a producer sitting down to read it sadly. There are a few short youtube vids that have all that stuff in them though and historic cheney footage, so I will give them that.
Didnt mean to offend, just was sharing what has already been tried.
Best luck with it all
Don't worry about it Tania :Retro smile:
Congrats on doing some advocacy Tulip.
I'm always amazed at the various opinions and viewpoints on the forums on everything from politics to everything else. It really kind of fascinating and enlightening.
Of course some days I wish everybody would just see things my way! Be so much easier wouldn't it? (my sarcastic humor)
Francelle. Glad you enjoyed the movie under our skin. Kind of amazing to watch that lady heal over the course of the movie. Even though it represents a portion of us, it really gives hope.
Good luck Tulip. I am sure we all wish you well. :Sign Good Job:
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