Journalists re XMRV & ME/CFS definitions

[Tony]

Someone else wisely mentioned that a good way to get our ideas across to the media is to write directly to the journalists who have written the story, in this case on XMRV.

This keeps them aware of what is going on, rather than only reacting to press releases from sources as dubious as the CDC if they use the empiric definition or anything from Peter White using the Oxford criteria etc.

As we know, the WPI study used a cohort who fitted both the Fukuda CFS definition and the Canadian definition for ME/CFS. I don't think it's likely that the Canadian definition will be used by anyone else.

We have a pretty comprehensive list of reports about XMRV and ME/CFS on this forum, thanks to Summer and others.

I think we should write to as many journo's as possible who have reported on XMRV telling them to be aware of what may come out re possible non replication of results such as 95% positive to antibodies. I'm thinking that would be a way to get our side of the story in their heads before they write any new story.

 

[Jerry S]

Tony

I agree. I wrote the Washington Post this morning urging more coverage, but I don't have any connection to a journalist there.

The WaPo hasn't covered this at all yet, as far as I can see. There was a short blog entry on Oct. 8 and that was it, except for a light opinion piece.

I've got another letter in on that, but haven't heard anything.

I might have a connection to a journalist at Knight Ridder. I'll check on that.

I think who we want to target on this is 60 Minutes or 20/20. It would be great to get someone at Frontline interested, also.

Any suggestions would be appreciated.

 

[Wayne]

XMRV on Frontline ?

I think who we want to target on this is 60 Minutes or 20/20. It would be great to get someone at Frontline interested, also.

Hi Jerry, Hi All,

Jerry, I think your idea about trying to get Frontline interested in this story is an excellent one. I would have some reservations about 60 Min. or 20/20. It might work out fine, but if 20/20 put John Stossel on it, who knows what kind of report he might come up with. He's dissed organic food and people with MCS in the past; I feel he can be pretty unobjective.

I just suspect Frontline might have the most interest. They really seem to thrive on hard hitting journalism. And I think it might be more likely they'll see the bigger story here than most other outlets.

I myself plan to make a visit to our local newspaper when I get back to Oregon in about a month or so. See if I can get them interested in following this story, especially since we're only about 300 miles from Reno which is where so much is now occurring.

BTW Jerry, I've been appreciating your posts. You sound like a sensible mid-western guy. (I grew up in Wisconsin--so I can relate).

Best, Wayne

 

[mezombie]

Contacting the news media

I think this is an great idea. I would add that contacting people besides reporters who wrote the stories we know of to date is also important. Editors and producers often call the shots as to what is reported, and someone else may be assigned to cover the story.

Some of us may know people in the media who we could approach in a friendly, personal manner.

Even without knowing a soul in the industry, it's often possible to find the names of editors and producers by going to the news source's website.

I cultivated a relationship with a producer a of national news show many years ago, giving her sources for background information, names of people to interview, etc. over a period of months. ME/CFS was not in the news at the time, but when it was, she was prepared and put together an excellent show.

The key, of course, is to be non-confrontational and suggest this may be of interest to the news outlet's audience.

 

[mezombie]

Wayne

John Stossel reporting on XMRV and CFS!

 

[Jerry S]

marie and wayne

Ditto on John Stossel, marie. I forgot about him. I never watch 20/20.

Boy, I'd love to hear that Will Lyman voice over on Frontline saying XMRV.

Yes, Wayne, sensible mid-western guy, that's how I like to think of myself. I grew up on a farm just on the IL side of the WI border. A lot of my friends were over the line in WI.

Good to meet you!

 

[zoe.a.m.]

Frontline would be Great!

I've had this same thought over the last week. Their website says that story ideas must be sent in to the office in Boston (snail mail). I think they might be the only program that could really do justice to this topic. I thought of Bill Moyers' Journal too--he is certainly capable of an excellent story on the topic--but I think it would be more likely to be seen if on Frontline (sorry Bill!).

Either way, I think PBS would whip the competition. They've been doing incredible pieces on healh care for the last year or so.

ETA: PBS pieces also often end up in highschool science classes as part of the curriculum as well.

 

[Jerry S]

zoe.a.m

Yes, ditto on everything. Bill Moyers would have to have someone to interview. Hmm.

Snail mail is always a challenge for me, but I think I have some paper around here somewhere.

ETA: I could see 60 Minutes doing a piece on the WPI. Morley Safer?

Frontline would be my first choice. That could really break things open.

I looked at your favorite characters in your profile. Ditto, ditto, ditto!

 

[cfsme23]

Perhaps the angle of the XMRV potentially being out there in the blood bank is something that would interest an even larger audience as well.

 

[Jerry S]

One more thought for today

Yes, scavo86, the blood supply issue is really going to get folks attention. Thanks for mentioning this.

It's easy for me to get focussed on one thing and overlook something important -- like the blood supply.

Oh, this was my thought. Wayne, having dredged up my memory of John Stossel (I was trying to forget!), reminded me that there are "journalists" out there that we definitely don't want covering this.

I really must chill the rest of the day.

Bye for now.

ETA: I see you're relatively new to this forum, Scavo86. A warm welcome! I really must rest. This time I mean it.

 

[Hysterical Woman]

Just my 2 cents

Hi All,

Frontline sounds good, but 60 Minutes a little scary. A lot of the "let's get the press involved" scares me, my heart just couldn't stand another repeat of the Dr. Oz/Teitelbaum fiasco. What about Charlie Rose - doesn't he occasionally handle some controversial stuff? Altho his time slot probably doesn't draw in huge amounts of viewers.

For those of you with Wisconsin connections, I went to UW Madison - what a gorgeous place.

Thanks,

Maxine

 

[Dreambirdie]

I dropped an email to 60 minutes the same week I was working on the Teitelbaum/Oz Show fiasco.

I think Frontline is an even better idea, and will write them as well.

 

[zoe.a.m.]

One way or another, the retrovirus discovery alone is gold!

I don't particularly care if the public is interested in it initially from the standpoint of it being tied to CFS/ME, it is still a huge discovery that promises to be tied to something very meaninful in terms of public health. Add to that the (well-covered in the media) lack of available healthcare, and there is a great deal to discuss in terms of implications. It's to the advantage of people with CFS/ME right now that there is a devastating shortage of every type of health care!

Perhaps the angle of the XMRV potentially being out there in the blood bank is something that would interest an even larger audience as well.

Yes Scavo86, that should be covered by someone somewhere. That topic created some interesting discussion at the CFSAC conference. At first it was just a suggestion that CFS/ME patients wait to give blood (or not give blood for the sake of their health) and later it was ramped up to something along the lines of, "don't you think it should be more than a suggestion at this time?" I think there's a bit lost in the lack of panic over it which is mainly due to the fact that blood screening has changed so much since HIV that they don't feel that it's a crisis. I recall someone at the meeting mentioned that XMRV existed outside of leukocytes, so the HIV precautions/blood treatment involving white blood cells wouldn't be sufficient. The man who spoke at the meeting on behalf of the blood supply seemed deeply interested and serious about it.

Oh, this was my thought. Wayne, having dredged up my memory of John Stossel (I was trying to forget!), reminded me that there are "journalists" out there that we definitely don't want covering this.

ETA: I could see 60 Minutes doing a piece on the WPI. Morley Safer?

Oh yes indeed! Can you imagine Barbara Walters? I think everyone short of Katie Couric would do the topic justice on 60 minutes (just my personal preference). I certainly wouldn't mind them standing outside of Bill Reeves' office trying to get him to speak if it came to that, or uncovering memos on CFS from the last 10 years!

I looked at your favorite characters in your profile. Ditto, ditto, ditto!

Thanks Jerry! I sort of laughed at myself afterwards for calling them "characters" as though they were out of the movies! One thing CFS has done for me is give me time to appreciate great minds and works--not that I'd mind having a normal life and enjoying such things!

Now to rest...

ETA: Thanks for the email to 60 minutes dreambirdie. And weldman, I doubt anyone could do as bad a job as Dr. Oz, so we just have to steer clear of Harpo Inc.

 

[cfsme23]

Yes, scavo86, the blood supply issue is really going to get folks attention. Thanks for mentioning this.

It's easy for me to get focussed on one thing and overlook something important -- like the blood supply.

Oh, this was my thought. Wayne, having dredged up my memory of John Stossel (I was trying to forget!), reminded me that there are "journalists" out there that we definitely don't want covering this.

I really must chill the rest of the day.

Bye for now.

ETA: I see you're relatively new to this forum, Scavo86. A warm welcome! I really must rest. This time I mean it.

Thanks for the welcome Jerry, I guess I am one of the new breed of sufferers but a familiar old history. 23 years old, med student, 18 months ago a bout of glandular fever or mono as you guys prefer and now I find myself on time out from uni, on Prozac and dealing with it all rather badly, but at least I still have hope!

 

[zoe.a.m.]

Hi Scavo!

Thanks for the welcome Jerry, I guess I am one of the new breed of sufferfers but a familiar old history. 23 years old, med student, 18 months ago a bout of glandular fever or mono as you guys prefer and now I find myself on time out from uni, on Prozac and dealing with it all rather badly, but at least I still have hope!

Thanks for sharing your story. I'm pretty new here and my social skills have gone rusty! That must be a very interesting standpoint from which to view this illness--is CFS/ME covered in med school where you are? It's certainly a hot topic in the US that it is not included here! I'm very glad you still have hope. I hope it doesn't sound insensitive to say that it's a fairly hopeful time to have recently gotten this illness, because I think awareness and a paradigm shift are already on their way!

Wow, it really is tough to stop reading these forums and rest!

 

[leelaplay]

welcome scavo86 and zoe a.m.

Thanks for the welcome Jerry, I guess I am one of the new breed of sufferfers but a familiar old history. 23 years old, med student, 18 months ago a bout of glandular fever or mono as you guys prefer and now I find myself on time out from uni, on Prozac and dealing with it all rather badly, but at least I still have hope!

Welcome Scavo86.

Never give up that hope!

And as odd as it may sound, with the xmrv news and other current research there's never been a better or more hopeful time to get this disease(as if it were ever good to get it, but you know what I mean)

It's not easy to have your life pulled abruptly out from under you. And then not to have easy access to a cure or easy understanding and compassion from your social network.

Many of us are sensitive to drugs and either can't take certain ones or have to start at a very low dosage.

I hope it is a short time out for you.

islandfinn

ETA Welcome zoe a.m. as well You may make mistakes, but you are typing quickly!!! Beat me by 8 minutes! Any dissonance between your response to scavo86 and mine are because I never saw yours.

 

[Hysterical Woman]

Hi Scavo

Thanks for the welcome Jerry, I guess I am one of the new breed of sufferfers but a familiar old history. 23 years old, med student, 18 months ago a bout of glandular fever or mono as you guys prefer and now I find myself on time out from uni, on Prozac and dealing with it all rather badly, but at least I still have hope!

Hi Scavo,

Welcome to the group. You will find an incredible amount of support and information here. If I am not mistaken, I believe that Dr. Sarah Myhill is in England? If you can, you might want to check out some of her research.

Take care,

Maxine

 

[Jerry S]

You guys are great! I'm going to stop reading this now and go to sleep. I really, really am.

Night, everybody

 

[zoe.a.m.]

hi islandfinn

Welcome Scavo86.

Never give up that hope!

And as odd as it may sound, with the xmrv news and other current research there's never been a better or more hopeful time to get this disease(as if it were ever good to get it, but you know what I mean)

It's not easy to have your life pulled abruptly out from under you. And then not to have easy access to a cure or easy understanding and compassion from your social network.

Many of us are sensitive to drugs and either can't take certain ones or have to start at a very low dosage.

I hope it is a short time out for you.

islandfinn

ETA Welcome zoe a.m. as well You may make mistakes, but you are typing quickly!!! Beat me by 8 minutes! Any dissonance between your response to scavo86 and mine are because I never saw yours.

That's funny, I noticed we had a jinx thing happen too! I have walking pneumonia and am half out of my head but I was trained as a medical transcriptionist earlier in my illness (a bit in denial, I was) and I guess the typing has stayed with me to some extent. I see you're in BC, maybe I can "skip" over there for a CFS doc... I used to live in Port Angeles and took the ferry over to Victoria many times--those were good days!

 

[Jerry S]

Charlie Rose

I can sort of see Annette Whittemore, Judy Mikovits, and Dan Peterson sitting around Charlie Rose's table, but it's very faint.

I can definitely hear Morley saying "the little research institute that could."

I'm not sure what Will Lyman is saying on Frontline, but I'd like to hear it.

Back to sleep.