The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Anyone contacted their local newspaper about CFS?

Discussion in 'Action Alerts and Advocacy' started by TheMoonIsBlue, Sep 21, 2010.

  1. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Anyone written their local paper? Something short and sweet and about M.E./CFS, the most recent discoveries of XMRV/MLV, and the desperate need for funding?

    I think local TV (many 11 news have short spots for medical news) may pick up on this- the problem is, you may get a doctor or commentator who has their point of view on M.E./CFS (negative) which could overshadow all the recent discoveries.

    Any really good writers, when their health is decent enough, maybe write a condensed letter and mail it to various local newspaper, and if even braver, to other newspapers?

    Usually in the "comments" section even small papers will posts a letter if it comes from someone local.

    I would If someone could help me figure out a condensed way to say what has happened, what is happening now, and what needs to happen for M.E./CFS/. I just don't know a great way to putting it all together shortly. Also, I would want to be annonymous.

    I forget..........the CDC devotes how much money per person with CFS? It was less than $1 per person, right? How much do they devote to acne?

    I need facts like this..........I'm not good remembering facts and facts are what get published. When XMRV was discoverd, the MLV's disovered, the severity of disability of M.E./CFS, stigma attached to it..etc.. OH, and what the CDC is doing for CFS patients RIGHT NOW. (including, could someone aprise me, they have ignored repeatedly the CFSCA's (sp?) recommendation for a name change? How many years have they ignored that?)

    I have a pretty large local paper I could write if I knew what to write.
     
  2. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    P.S. Maybe if we could work on this together we could sort of come up with a basic "Form" letter and then just tweek it a bit personally and mail it to our respective newspapers.
     
  3. *GG*

    *GG* Senior Member

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    Mm, I wonder how much the US Fed Gov't spends on Acne etc. Research?
     
  4. mezombie

    mezombie Senior Member

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    East Coast city, USA
    Facebook ME/CFS Media "Cause"

    Hi TheMoonIsBlue,

    Are you familiar with the newly formed ME/CFS World-wide Patient Alliance?

    It's currently a Facebook cause but we hope to move to our own website soon.

    The focus of this group is very much on getting the word out to the media. PR member UsedtobeperkyTina, a reporter, has already put out a press release. And we are in the process of creating an ad with all the pertinent facts to be published in the Washington Post.

    If you're on Facebook you can join the cause here:

    http://www.causes.com/causes/511536

    Or you can contact Tina.

    At the recent patient meeting with NIH, one participant stated that NIH spends as much on ME/CFS as it does on hayfever.

    ETA: Cort wrote an article about this cause. You can find it here: http://www.forums.aboutmecfs.org/content.php?227-A-Time-To-Act
     
  5. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Hi MeZombie, yes I have heard of that group. Are they the ones trying to do a full page ad in the wall street journal? That would be HUGE and totally...awesome!

    I don't have a facebook account, I would like to open one sometime.

    I still would like to write letters (or emails) to LOCAL papers.............somehow I think that, if our so to speak "neighbors" read about this illness affecting someone local, and how debilitating it is, so forth.....it might make the illness seem more real to them.

    I'm just very unscientific, to be frank, and keeping all these facts straight is difficult. I would like to write a short, accurate article or letter to my local papers and media and hopefully bring this illness to the attention of the people in my community. Actually my "local" paper is a fairly large one in a city with a LOT of hospitals.

    If 10 or 20 people did this.........that would be 10 or 20 cities with some citizens who would atleast now have some idea that CFS is a serious disease that can strike anyone.

    I think when something feels close to home, it strikes a (different) nerve.

    But still an ad in the WSJ or any other major paper would like a major nerve in the consciousness of everyone, especially and hopefully disbelieving doctors..... (did that make any sense?!) :)

    I think if people also could just email their local newspapers or TV stations and see if there is anyone there who is interested in this story, then all we would need to do is send them some links about what has been unfolding in the M.E./CFS arena lately and they could go from there......an interested journalist with credentials.
     
  6. Cloud

    Cloud Guest

    Yep, got one article printed a couple years ago and then they declined when I tried for a story last year on the contaminated blood supply issue. They may go for it now. I'll give it a try. My wording is very similar to the current sample press release by the patient alliance.
     
  7. mezombie

    mezombie Senior Member

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    The ME/CFS World-wide Patient Alliance will be doing more than placing an ad. That is just the first step! Encouraging media coverage in any way is definitely on the agenda.

    We will have a website soon, so people who are not on Facebook can join.

    For those on FB, the sample press release I mentioned is here: http://www.facebook.com/board.php?u...=512#!/topic.php?uid=5004684872608&topic=1539

    Tina can also be contacted at editor@claynews.net (she has posted this herself here several times). She and others have collected facts aimed at interesting journalists in our story.
     
  8. muffin

    muffin Senior Member

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    THANK YOU MEZOMBIE!!!! Yes we do need more people to help, join, donate (if possible), make comments and give ideas. We have a "2FOR1" SPECIAL going on right now - for every dollar you donate, a kind person will match that dollar - total up to $1,000. In a 24 hour period we have (23sept at 6pmest): $573 (to be doubled by the donor) for total of $5,423 (not yet doubled) and 1,141 members!! We just started this "2for1" Special on Tuesday at 11:30am!!!!

    We will also be getting our website up soon and the three ADS out for review by members. So we are moving it out and doing great for such a short time (about 7 weeks).

    Help us!!! Email Tina at editor@claynews.net or join and add your ideas, comments, and offer any help you can give.

    If we don't get this AD in the Washington Post NOW while we have the opportunity, we may never have a shot like this one again. It is THAT critical.

    Also, as noted, there is a press release that can be sent to your newspapers. We would LOVE for everyone to send something to their local papers. You all know that much of what the major papers/tv pick up and report does in fact come from the locals. So, either write your own words - what you feel, how you live or use the Press Release Tina wrote for us. But make noise!! Also, please add the Causes link to your emails, posts, blogs, etc. so that others can find out what we are doing.

    We know this will work. So please do hit your papers, JOIN US, HELP be part of your own cure!!!! Thanks MEZombie!!!!!
     
  9. Galena1

    Galena1

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    Here in the UK I have tried many times to interest the national and local press in a variety of ME/CFS topics and have never even received an acknowledgment. It would seem generally that the major (only?) opportunity to express an opinion is by responding in the newspaper's online 'Comments' section when they do publish a rare (and frequently useless) article.
     
  10. muffin

    muffin Senior Member

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    Galena

    The ME/CFS Worldwide Patient Alliance will get something big into the UK papers. We have several UK people working on this campaign and they know that after we hit the Washington Post, we hit the NYT and we get our way into the UK papers and the rest of the European papers too. We MUST.

    We will find a way to get past the Weasel and get to the public - not to worry. We just have to crack our first goal and we are doing that now.

    So soon, we nail the UK papers. Please join and be yet another UK person working on the campaign. We need more UK and Europeans so that we can get the info we need to get our way into the newspapers and media there. One of our first and very important members is from the UK and she is very involved in the UK ME campaigns as well. She knows the ins and outs of the UK politics.

    So join. We need folks from the UK/Europe in addition to the Americans. We need EVERYONE NOW!!!
    WE too want that Weasel and his sociopath friends OUT of the UK ME business. We too want the Weasel and his sociopath buddies out of your medicine period.

    Join!!!! FIGHT.
    http://www.causes.com/causes/511536?m=f042604e
     
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    As a journalist for seven years, remember, journalists are interested in a story if it includes the following:

    broad interest (affects many)
    Is new
    Is different
    Is change
    Has controversy

    Now, the big factor is that it include the above and be an event or be a public action.

    The ad campaign would be a public action. In other words, instead of telling reporters to do a story, we will do something so they will come to us wanting to find out why we did it.

    Tina
     
  12. Cloud

    Cloud Guest

    Thanks Tina, that makes sense....it basically needs to be enticing and exciting, and maybe even shocking (yet accurate)! I would say a contaminated blood supply story does just that.
     

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