The Newspaper Interviews... - Restless Legs Syn...

Restless Legs Syndrome

22,322 members•16,387 posts

The Newspaper Interviews...

•

11 years ago•18 Replies

Just out of interest, as its gone very quiet about this. Are there anymore newspaper interviews being done by any of the members.

I know a few put their names forward, so just wondering if anything is happening...?

The ability to reply to this post has been turned off.

18 Replies

•

thedragon11 years ago

I know rls needs as much publicity as it can get and I was willing to do any interview but after the grief jean was given : I probably wouldn't do it now. It's not worth damage to ones own personal well being!

eileen4911 years ago

I put my name forward but haven't heard anything and the way the national papers treated poor Jean Stones I don't think I'll bother. They twisted everything around, made a big joke out of it and made her a laughing stock - It was outrageous.

11 years ago

I agree with both of you. Jean Stones was treated badly. It seems when dealing with newspapers, one has to have your wits about you, and make sure you get control. The first interview was a very good one. The second newspaper was the one who turned it upside down and resulted in bad publicity. That bad article has been removed from that paper and another, which also picked it up. But even so, it shouldnt have happened in the first place.

Its a shame we cant tell our story without some reporter wanting to put an angle on it.

I think its the getting control of your story is the key, making sure you are the one who is in charge.

But i guess no one is now willing to take part.

• in reply to11 years ago

the second paper was a sister paper to the birmingham mail, they used the same picture, so they obviously had permission from the birmingham mail, and they were told not to put "" dancing"" in the article ( i saw this on another site),but they went against what they said, "copy approval" and kept the word "dancing" in the article, and so, as they were the original paper that run the article, all the blame lays at their doorstep, plus the indian paper used the same picture, there again they MUST have had permission from the birmingham mail, copyright of their pictures is what springs to mind here !!, and did anyone notice in the indian article ? they quote Martin Fricker as the source, surely anyone with half a brain, would know that for them to use his name, they MUST have had permission for this, and does anyone know how Jean feels about it all, apart from the distress it must have caused her, how is she ? did she get an apology? has anything been done about it? did she get any kind of compensation for it ?..........i wonder

• in reply to11 years ago

Tallula, I have been in touch with Jean as a few others have aswell. We all did what we could to help her. as in writing to the biirmingham news, telling them the fault of all that happened lay with them.

Jean contacted Martin Fricker, and the Indian paper one was also deleted.

She got a letter of apology from Martin Fricker on the Daily Mirror article, and there was also a video made by some media people, that ended up on utube, that has also been removed now. She got a big bouquet of flowers from those people.

Jean has been extremely distressed by what happened. But, she is in a better frame of mind now.

As i said in my other comment, it seems you have to be aware of how the media works, before you agree to doing an interview. We know how they twist words to make a story sensational even at the expense it seems of a vunerable woman,.

• in reply to11 years ago

You are right Tallula, the original reporter did not change the word "dancing" after Jean, asked her to. so, yes the blame does lay with the birmingham mail... that one word, was what changed the whole article by the Daily Mirror.

TiredparentRestless Leg Syndrome11 years ago

I think this is a tricky one. I did an interview a couple of years ago with a 'sensationalist' style of magazine and the journalist really tried to twist what I said and put words in my mouth. I found it very frustrating but she was a freelance journalist who would only get paid by the magazine if they bought and used her article. She knew what the editor and the magazine's readers expected and wanted. She has bills to pay like the rest of us. If her article didn't fit the bill, she wouldn't have been paid for her time (which was a large number of hours).

In the case of Jean's article, I don't know all the details but as far as I know, the original article was accurate and Jean approved it. However, a lazy, sloppy journalist read the article and wrote a ridiculous 'copy-cat' article without our involvement or permission. In no way am I endorsing what he did, but from an tabloid editor's point of view, he is more likely to include an article which is lively and slightly humorous rather than a more tame and less 'colourful' one. Yes, it was inaccurate and made light of the condition, but that is sometimes of little interest to an editor who wants to sell more newspapers!

The fact that the journalist got his facts wrong and made light of the condition, reinforces the fact that there is a lack of awareness of what the condition is and how seriously it affects sufferers. We mustn't let that one article (which was almost immediately removed) detract from how powerful and interesting Jean's story was. The only way we will change perceptions of RLS and raise awareness levels, is by continuing to speak out.

This was a very unusual and rare situation and very disappointing and upsetting for Jean. I have an enormous amount of sympathy for her. However, the original article was fantastic and it succeeded in spreading awareness of RLS. We know from the feedback that the article was very meaningful, helpful and supportive to a lot of people and I think we must hold on to that achievement.

On behalf of RLS-UK, I'd like to once again thank Jean for what she did and likewise to thank others who have volunteered to help or helped. We can't control the media, any more than a major company or celebrity can! The more we keep putting out accurate and helpful information, then hopefully over time, the general public will learn what RLS is.

Rosie Braidley

Vice Chair, RLS-UK

• in reply toTiredparent11 years ago

sorry no she didnt, they put the word dancing in it and according to what i know she TOLD them it was nothing like dancing, and to take it out, they didnt, after she was told she had copy approval, she was betrayed, yes thats the right word, by the birmingham mail,

• in reply to11 years ago

have you told Jean this Rosie ?? i know shes no longer on the forum, so cant speak for herself here, thats a shame dont you think ?, she spoke up for us, now she doesnt have a say, and i know how i would be feeling now if i was Jean, very cut of, very let down, and very insecure of herself, it was a soul destroying exercise, i think, one i would not have coped with

Daragh11 years ago

I think we have discussed this matter to the full extent that we can. What we all know is that the newspaper deceived the person who volunteered to act as a case study and it had a huge effect on her. It was also very difficult for all of her friends, seeing her being ridiculed when she was trying to help people. Hopefully it will become easier for her as time passes. However, she did help many people through her actions. That is something she can be very proud of. Hopefully she will rejoin the forum if and when she feels the time is right.

thedragon11 years ago

I was super proud of her but sorry for how it all turned out! ..

• in reply tothedragon11 years ago

so am i

nightdancer• in reply tothedragon11 years ago

She did a great job, and was taken advantage of, and her friends had to rescue her and help her, quite truthfully.

nightdancer11 years ago

What has NOT been brought up here, and I have done lots of press, the whole thing comes to down to the papers you sign. If these papers contain the phrase "may be edited for style", you will most likely not even recognize half of the article after the interview. That phrase means they can do whatever they want, whether it is right or not. And, it is true that Jean was treated extremely badly all around, but after the many, many emails and friends helping, the horrid youtube video has been taken down, the article in the Indian newspaper has been taken down, as well as the one in the Daily Mirror. While it is EXTREMELY important for all of us to raise awareness, this is a good example of how ugly it can get. I had videos that popped up on youtube, and I had dealt with TIME, INC in their studios in New York City. It got so bad on youtube, which just draws "trollers" who want to be nasty. They finally turned off the comments, so that part of it stopped, but there is nothing I can do to get them taken down. The video that got the worst comments was the one "I just want to cut my legs off!" You can only imagine. So, this was my bad experience, and I sure learned my lesson before I ever did any more press. What I am saying needs to be heard and read by people who are thinking of doing this. I applaud anyone who will do an interview and put themselves out there, but this post is to raise awareness to read every word of what you sign. Please do not delete this. It is important information, and I do know all of the stuff that went on behind the scenes, so I am just trying to protect my fellow RLSer's in the UK>. The US press can be just as bad. Every newspaper belongs to a media group, or almost every one in the world. That means they own way more than one newspaper in different countries, magazines, etc. Just be careful, but we do need to get the word out about RLS. One of MY members sent me a picture of her legs today that she has been punching because her RLS is so bad, and THAT is what people need to see and hear about. You can see the knuckle marks on her thighs!! No one should have to go thru that, and that is why we DO need to raise awareness knowledgably. Her doctor will give her no meds of any kind for it. So it is awfully sad that people are still going through that kind of suffering and treatment. <3

Rish11 years ago

I put my name forward and was contacted but as I asked my questions and concerns I soon changed my mind as I know from what was said my story would soon be changed!! Terrible it is they don't care about who they hurt! Anyway sorry everyone but I could not do it!

11 years ago

Glad you had your wits about you Rish, and realised your story would not get told the way you wanted. Dont be sorry, you were prepared to help by giving a newspaper YOUR story of how RLS affected you. By changing your mind, at least you did not get humiliated like Jean did.

Rish11 years ago

Thank you Elisse, I think what made me mad was after they write my story then it's like a bid from other papers and who pays the most for it then can do what they want with it!! I sudden thought of all the up set I have had in the past with my RLS and I started making headlines of my own that they could have maybe put..... They were awful and my husband said goodness me if they did that and they did it to jean then he said no way will you cope with that being splashed in the papers! So its best I don't .

It's such a shame really that they do this but that's what they are all about! Out to sell !

11 years ago

Yes, thats the problem it seems, you get copy approval, but not copyright., then other papers, like you said, take the story and do what they want with it. Which is exactly what happened to Jean....

I think we have all learned a lesson through this, never just let a story go to the press without copyright..AND copy approval. If you can get that, then dont do the story...

The ability to reply to this post has been turned off.