Come in the UK's media,your time has come !

taniaaust1

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ABSOLUTELY NOONE HAS CLAIMED ALL ADVOCACY SHOULD HAPPEN THERE. I have simply said that MY project, the one I am trying to put together, should happen where I am, in an environment in which I am comfortable. That environment is not here.

Just STOP arguing about the forums, and you will see that these disputes will go away!
and no one ever said to you to do your project here.. that is something you choose to believe i was saying which i never said at all, go back and read the old posts on the other thread. i never told you you had to do anything on this forum... (we've been throu all this), you are the one which was telling me that i wasnt allowed to be doing certain things (even when i'd previously got the okay with someone).

As ive said all along.. people should be able to post on whatever forums they wish too and allowed to do them too on this one if that is what they want. No one should be made to do something in a certain place. Its a free country.

and yes i was refering to you in my post as ever since you had that go at me for no reason as you took my post wrongly, ive been now wary of everyone else doing the same and hence acting quite paranoid as believe it or not, i hate any form of disharmony and it stirs me up. note thou .. i left names out as i didnt plan to bring all this up again. I was just trying to explain to the other poster why i'd taken her post wrong. (maybe ive got a wrong way of explaining, ive no idea)
 

ukxmrv

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In the UK we face a different problem than just needing people to be able to ring around newspapers or write letters.

It is a specific problem with newspapers/media having already taken a partisan line against reporting the physical realities around ME. Some newspapers are supportive and some are actively and repeatedly attacking.

Each newspaper has their own take on this. Some surprise us, journalists come and go. Things can go up and down. It may be difficult for people abroad to understand how political ME is in the UK and how actively against us some newspapers are.

I'm not joking about this and it may be hard for people overseas to understand - it's so bad.

There are newspapers that take a delight in publishing anti-ME articles and a delight in the number of letters they receive in response. They think it is funny and like to "wind us up". The press complaints commission doesn't protect us and all our attempts to fight the hatred fail.

Supportive journalists need to be nurtured as they are few and far between. Editors know how patients feel, how many there are and how interested we are in issues being reported. They know this because each time they report ME issues they get many letters, complaints and if online many comments.

This is why advocacy needs to adopt to the circumstances of each country. This isn't a simple problem. However, I am VERY grateful for all advocacy help from people abroad.

Thank you Muffin and all for understanding and helping us here.
 

Sasha

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Totally agree it's very weird in the UK media, UKXMRV.

We have at least an opportunity online with The Guardian at the moment - they put on a story about STDs and someone said, "well, what about XRMV then?"!

Check over on the UK media coverage listings thread for details. Several of us have posted - and, since I suspect that some journalists do take a pleasure in winding us up so that we get angry and look like nutters, I suggest keep it polite but just reiterate the important aspects of the story briefly and ask, why isn't it covered?
 

Sasha

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Totally agree it's very weird in the UK media, UKXMRV.

We have at least an opportunity online with The Guardian at the moment - they put on a story about STDs and someone said, "well, what about XRMV then?"!

Check over on the UK media coverage listings thread for details. Several of us have posted - and, since I suspect that some journalists do take a pleasure in winding us up so that we get angry and look like nutters, I suggest keep it polite but just reiterate the important aspects of the story briefly and ask, why isn't it covered?
I have to add, how ridiculous that we have to resort to commenting on a story about VD to get the story into the Guardian! What a farce.
 

taniaaust1

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There are newspapers that take a delight in publishing anti-ME articles and a delight in the number of letters they receive in response. They think it is funny and like to "wind us up".
:( that's sad.

Esp if they are so blind to what is happening in the rest of the world. ****starts wondering if the rest of the world can help with the English media****
.........

im kind of kicking myself right now that i didnt write to your health system the other day (i've forgotten what they are called now but i was on thier site, trying to learn more about the English health system). I saw one who had CFS/ME who had done a comment there about her story.. it was so shocking and sad. maybe if some wrote to them from other parts of the world, to tell them just how bad we think they are treating those with CFS/ME in their country. It's shameful, its like England is in the dinosaur age still.
 

ukxmrv

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Hi Sasha,

Yes, I've seen that link. That's it what I have been doing in the copious letters and emails I have written in the past week. Lots of other people in the UK doing it as well. Glad to see no opportunity is being wasted!

=====

Tania, anything that you can do would be appreciated. If another country had a newspaper who would be willing to write the horrific story of what goes on here, I think that they may even be ashamed of being internationally embarrassed.

It's one of the reasons I am looking for solutions out of the UK. It's a human rights abuse.

(as a hint on that topic I don't need any links to international agencies, that's already being tried)
 

taniaaust1

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Im trying to think of sneaky ways you guys could get the XMRV stuff more noticed.

Here's an idea.. someone could put a wee innocent looking ad into one of the main newspapers in the wanted section (or whatever other section it would fit), asking if anyone is out there who has the new retro XMRV and MLVs viruses (recently discovered and published in PNAS) , could contact you. The ad could ask if anyone knew where this was being tested for.

i bet that would get some people onto their computers to looking up what the heck this new virus is esp anyone of the medical profession who may not have heard of this virus yet so it could get their attention and curiousity. If you could bring all this to the attention of medical professions, maybe some would privately help the cause.

(clarifying.. aim.. not to expect and get any replies but rather to just bring it to some peoples attention.. hopefully some medical professionals)
 

taniaaust1

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Tania, anything that you can do would be appreciated. If another country had a newspaper who would be willing to write the horrific story of what goes on here, I think that they may even be ashamed of being internationally embarrassed.

It's one of the reasons I am looking for solutions out of the UK. It's a human rights abuse.
I think America CDC is the big one the international community needs to hit as it has more of a chance of getting throu there and hopefully if they shifted.. leaving England completely with different views... England is more likely to shift being completely alone in its views. i kind of think the CDC may have some connection with Wessely (very friendly together). England is the hard one and the one which is currently affecting rest of world some, even where i are here.

but yeah. that no media publishing thing.. sounds like something which would go on in China. You guys are really lucky to have Sarah Myhill, who keeps fighting over there for what is right.
 

awol

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and no one ever said to you to do your project here.. that is something you choose to believe i was saying which i never said at all, go back and read the old posts on the other thread. i never told you you had to do anything on this forum... (we've been throu all this), you are the one which was telling me that i wasnt allowed to be doing certain things (even when i'd previously got the okay with someone).

As ive said all along.. people should be able to post on whatever forums they wish too and allowed to do them too on this one if that is what they want. No one should be made to do something in a certain place. Its a free country.

and yes i was refering to you in my post as ever since you had that go at me for no reason as you took my post wrongly, ive been now wary of everyone else doing the same and hence acting quite paranoid as believe it or not, i hate any form of disharmony and it stirs me up. note thou .. i left names out as i didnt plan to bring all this up again. I was just trying to explain to the other poster why i'd taken her post wrong. (maybe ive got a wrong way of explaining, ive no idea)
Tania,

I don't know how to be clearer, but everything I write you misread.

1. Everyone can post wherever the hell they like. How on earth could we restrict that?

2. You are allowed to post links to stuff on the Wiki and in the public domain for the other forum anywhere you want. I have no idea how you got any other idea than that from what I said.

3. You said early on that you wanted to participate in Project ENOUGH!!! That is fantastic. I welcome your help. I don't know why the hell you choose to only communicate with me here when I have said repeatedly that I hate coming here. The polite thing to do would be to respect that and talk to me there, since you are a member and are perfectly capable of doing that. By refusing to do this you are, in fact, forcing me to spend far more time here than I wish to, which, by extension means that you are forcing me to engage you only on your terms. That has nothing to do with cooperation.

4. There was not "no reason" the reason is that you quite wrongly slandered me and others from the other forum and are continuing to do so by implying that we are out to stiffle advocacy activities and that we are uncooperative. It is amazing how much better people get along when they don't slander each other. Last I heard from you we had had a peaceful exchange by PM and I thought the issue was resolved. Then I came across this thread. WTF? Of course I am going to react.
 

Sunshine

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48 hrs later.............

Main respected sources of news media in the UK

TV

Sky News - ''First for breaking news'' (Never reported SCIENCE/Lombardi paper either).
BBC News
Channel 4 News

National Newspapers

Broadsheet:
The Telegraph Newspaper
The Times Newspaper
The Guardian Newspaper
The Independent Newspaper
Financial Times Newspaper

Tabloid:
The Daily Mail: MULV finding reported online
The Daily Mirror
The Sun
The Daily Star
The Daily Sport
The Daily Express


Just one of the above media sources have reported the Alter/Lo MULV finding in CFS online in their health sections nearly 48 hrs after it was known.

Despite XMRV/MULV potentially affecting 4.3 million in the UK.

Good old ' British Justice', from 'Great Britain'. :Retro mad:
 

taniaaust1

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It may look very bad but sadly it probably isnt much different the world over.

i dont know as i could of missed something.. but things werent all that different as far as i can tell in Australia. As far as i know, i havent seen it reported in any newspapers (im unaware of anyone here targeting any trying to get it into them, so they probably still dont know? (im waiting for the next postive study to come out and im going to target them then asking if they can do an article on it). TV news reporters here did get targeted and they were interested, i was the first they heard it from.. , yet thou they were interested, i didnt see it make any of the news.

Australia did thou get two different radio interviews out of it. Hopefully America rated better with the publicity.
 

awol

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Hi Tania,

Maybe you and the Aussie army can start a guerilla media coverage campaign there, like what Sasha and company have done on the Guardian website?

Just pick a newspaper, then pick an article, then take over the comments section to talk about the paper and its importance! It is brilliant.
 

awol

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Muffin,

Tania and I have once again resolved our differences in PM.

I am not abusing any sick people, but I am tired of being attacked on this forum and feel the need to correct wrong information about me, my project, and the other forum when it comes up.
 

muffin

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Thank you AWOL. I deleted my post after I saw that you were being supportive of Tania. I really do appreicate that supportive exchange. So, my "lecture" is deleted.
I love it when we support eachother. Keep the lines of communication open and if there is a problem, discuss and resolve it as you both have done so wonderfully.
Very pleased. Thank you again.
 

Sunshine

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Thanks Min.

So this means we can confirm total news black out over MULV in CFS?

I wish we could add this to Osler's Web somehow or the ongoing ME documentary. :)
http://oslersweb.com/
http://www.whataboutme.biz/

Looks like we'll be given a 'gift' of a Wessely'd article in the Sunday Times at best....
Ohh well. We'll have to look forward to the XMRV conference on the 7th/8th September for another chance of media exposure.
 

lancelot

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Tania, no worries. People in the UK are emailing, writing etc etc as we type. What I was trying to say is that the effort isn't being co-ordinated here or anywhere obvious so you may not see it/know it.

I'm not trying to send business to another site (not sure where you got that idea from?). I'm not involved in any forum war or keen to join one.

Just speaking up for the many UK people who are already doing things. It's a silent unreported group and they need a pat on the back. They have the newspaper addresses and are on to it in the way they have been for decades.
Can you tell us the names of these "silent unreported group" that is working hard behind the scenes so that i can give them a pat on the back? Can you also provide a link to the threads and forums where they are silently working feverishly on this to the media. we can all help.