Article: Report - CFS Will Be on CBS National News Feb 23rd with Katie Couric and Nancy Klimas

Article: CFS on CBS National News Tomorrow with Katie Couric

You can view the page at http://forums.aboutmecfs.org/content.php?371-CFS-CBS-News-Katie-Couric-Klimas-PACE

 

CAA's comment:

CFS will be featured tonight on "The CBS Evening News with Katie Couric." The report focuses on a new research study on biological markers found in the cerebrospinal fluid of CFS patients described below. The University of Medicine and Dentistry of New Jersey circulated an embargoed press release and the CFIDS Association helped media outlets, including CBS News, to interview patients and experts about CFS and the study. The embargo lifts at 5:00 p.m. (EST) today and we are pleased to bring you immediate analysis of this study and its results.We'll recap media coverage in the next issue of CFIDSLink.

Link to the research:
http://www.plosone.org/article/fetc....1371/journal.pone.0017287&representation=PDF

 

Tina, here's the situation. The press isn't talking to me. This isn't a dialog over which I have any control as you would imply. The only hope is to stuff their inbox with information to balance out the damage done by the CAA this past week. They could use some PR lessons if you're looking for students.

It's nice that you and the CAA are "in the know", and I'm not saying that as a cheap shot at MWCPA or PANDORA. Well, I'm not "in the know" about this study so I can only ACT on what I do know. Right?

I haven't brought up PACE or anything else from "the other side" in my communications but and while I appreciate the rational I don't think it's my place, or yours, or the CAAs to tell fellow-patients what to say or to whom.

From what I know the their story and the lead-in is reportedly about feeling tired. That doesn't give me confidence that this story is going even going to be as even so much as a little feel-good thing that will be quickly forgotten but cited as a PR victory. The damage done by PACE cannot be undone by the kind of story this appears to be.

Which story are the physicians going to grab onto? PACE, far and away. It's already in their minds and fits with what the CDC tells them. Another (big) brick in the wall.

After 100 of these stories we might be getting somewhere but until there's some serious conversation about XMRV in the press this is really just window-dressing, if we're really, really lucky and it doesn't go sideways. Throw some more biomedical research onto the pile where it can be ignored by those in power.

ETA: I will gladly eat my words if there is more to this than it appears - e.g. we get to talking about gamma-retrovirus in the press.

I hope you are forced to eat your words Otis - I imagine that you would enjoy that meal. The hint that the a new spinal fluid study will be discussed provides hope for me. I was thinking that there is a ying/yang aspect to many news stories - they want opposing views....a study that validated neuroinflammation in the spinal fluid would be a nice yang to the PACE ying.

And - Nancy Klimas knows the ground now - she knows the spin; the best thing she can do is to put the PACE trial in the right context. The first thing I would say is that the PACE trial conclusions prove that CFS is not a) behavioral disorder and b) that CBT/GET are inadequate treatments. Right now all the conversations are oriented around "Exercise and CBT are good for CFS" Talking in that context is a huge mistake! It makes the public think they will cure CFS....It puts us on the defensive immediately. Its a strategic error of immense proportions IMHO.

 

CAA's comment:

CFS will be featured tonight on "The CBS Evening News with Katie Couric." The report focuses on a new research study on biological markers found in the cerebrospinal fluid of CFS patients described below. The University of Medicine and Dentistry of New Jersey circulated an embargoed press release and the CFIDS Association helped media outlets, including CBS News, to interview patients and experts about CFS and the study. The embargo lifts at 5:00 p.m. (EST) today and we are pleased to bring you immediate analysis of this study and its results.We'll recap media coverage in the next issue of CFIDSLink.

Link to the research:
http://www.plosone.org/article/fetc....1371/journal.pone.0017287&representation=PDF

Thanks Anncavan (I never realized how nicely your tag rhymed before ) Good for them.... The CAA royally screwed up the PACE response but it looks like they are hitting just the right notes here. Give them their due when they deserve it.

 

Suzanne Vernon seems to have been the provider of quotes on this round of news stories, so far.

Mostly good, but I wasn't so crazy about her quote on Amy Dockser Marcus' WSJ blog - "you can't go around poking people in the spine."

Yes, I know perfectly well what she means - nobody wants a lumbar puncture/spinal tap to be a routine diagnostic test; expensive, hard on the patient, lots of trouble for everybody. I do not dispute that and I fully agree that the road eventually needs to lead to something easier to do routinely and quickly.

But she could have refrained from making such a dopey-sounding comment in the face of this immensely important research release. Before they get this thing fine-tuned of course they'll need to keep doing lumbar punctures for research. I would be THRILLED to sign up for a lumbar puncture. I'd be first in line, given the opportunity. You have my word on that.

 

Thanks Anncavan (I never realized how nicely your tag rhymed before ) Good for them.... The CAA royally screwed up the PACE response but it looks like they are hitting just the right notes here. Give them their due when they deserve it.

Cort,

Give them their due for what? They didn't fund this study, just published an "analysis". Right?

And timed the release with the end of the embargo. This is like them leaking out tidbits from the BWG. No contribution, just some desire for credit for reporting the story. Is this now the CAA's focus? Bringing us the news that we're going to read anyway? Not the new direction I had in mind when I voted in that poll.

The time and energy spent on this could have been spent prepping a decent PACE response.

This looks exactly like what I predicted when I said

Throw some more biomedical research onto the pile where it can be ignored by those in power.

Not exactly the meal of roasted crow I was prepared to eat. Not so different from NK cell function or all sorts of other stuff we've seen driving down this road for 25 years.

I hope Dr. Klimas can make something of this but I'm not optimistic.

 

Dr. Baraniuk's initial work was funded by the CAA which is why they should get credit; as I said earlier, the CAA's research efforts are good, it's the advocacy I have a problem with. If Suzanne Vernon is responding, that is better also, esp. if it is in regards to science matters rather than more general issues. It helps to have the initials after you name sometimes. I also hope the CAA establishes a scientific advisory board, if they don't have one already, in addition to their general board if they want to focus on research.

Here's my response from the other thread:

Well, when I posted my original call for action, I knew I was doing it with the risk of possibly getting the story wrong and one person I talked to told me maybe I should wait until clarification was done. However, I felt that waiting was the wrong response since I only had a few hours with limited energy to respond and my audience (you guys!) might not pick up the message in time and would need time to write in. So I took the risk, thinking it's better to act first and then ask for forgiveness later.

I hope that this study is reported such that it helps support ME/CFS as a biological illness. I am not sure yet what the impact will be as skimming the paper, it is a small study and primarily concerns distinguishing ME/CFS from post-Lyme disease, which from a science perspective is great, but not sure how this counteracts all the negative PACE information already all over the place. My other thought was even if I was wrong, at least I would have given CBS staff a window into what ME/CFS patients dealt with and they might investigate further. So THANK YOU to everyone who wrote/called in and to the people who helped spread the message!

My last defense: this is what happens when a scientist tries to do PR! (usually, I'm pretty cautious) So, I am glad that other orgs are taking over and doing something with this!

 

Cort,

Give them their due for what? They didn't fund this study, just published an "analysis". Right?

And timed the release with the end of the embargo. This is like them leaking out tidbits from the BWG. No contribution, just some desire for credit for reporting the story. Is this now the CAA's focus? Bringing us the news that we're going to read anyway? Not the new direction I had in mind when I voted in that poll.

The time and energy spent on this could have been spent prepping a decent PACE response.

This looks exactly like what I predicted when I said

Not exactly the meal of roasted crow I was prepared to eat. Not so different from NK cell function or all sorts of other stuff we've seen driving down this road for 25 years.

I hope Dr. Klimas can make something of this but I'm not optimistic.

Give them their due for what? They didn't fund this study, just published an "analysis". Right?

Nope. If they did prep Katie Couric and the CBS news team media and found CFS experts and patients for them to interview that is something. (Or would you rather the media talk to Dr. Reeves or Dr. Unger to get their information? I didn't think so)...There is a contribution here and it could be a substantial one.

I think this is part of the PACE response and an important part. I would also suggest that spending time getting experts and giving input to a national program on CFS (and the PACE trial) was probably well worth it.

There are positives here. The program will surely focus at least partly on this new finding which provides another validation of immune (complement) activation in CFS. That means that the complement system has been implicated in CFS by at least four studies, two using proteome analysis and two using gene expression and that complement activation (who knew?) is starting to become a solid topic for CFS. They can also tie in similarities in protein expression to Alzheimers and Parkinson's disease.

Hopefully your rather gloomy outlook on this program will turn out incorrect. Only time will tell. . (and not alot of it... I guess the program is starting to air.....too bad I don't get cable.......

The University of Medicine and Dentistry of New Jersey circulated an embargoed press release and the CFIDS Association helped media outlets, including CBS News, to interview patients and experts about CFS and the study.

 

Those on the East Coast of the US, please post reports. It's only 3:30 here.

 

Who said they funded the study? Who said anything about reporting?

Yes, I know you dislike the CAA but if they did prep the media and find CFS experts and patients for them to interview that is something. Or would you rather the media talk to Dr. Reeves or Dr. Unger to get their information?...There is a contribution here and if you don't want to see it's because you don't want to see it - not because it's not there.

The point was "what did the CAA DO?". I've been trying to find the contribution. Thank you for a little clarity on the matter. They're putting a face on the news. OK.

Personally I think those limited resources should have been spent teeing off on the PACE response to get something in front of the Drs. abuse us but maybe that's just me and the other 94% voting in the poll. It's not just me who dislikes the CAA. It's darn near universal right now as near as I can tell.

You and Dr. Vernon are far more enamored with these "biomarkers" than I am. How does this get me closer to getting off this bed than all the rest of the research that's being ignored by those in power? Great, we have a shiny new study to go into Pubmed with the other 5000. So what.

 

Yeah...the third lead story. Chonic Fatigue Syndrome - not all in your head! Story is coming up in a few minutes.

Lynn

 

Just heard from my mom in the midwest. She said it was good. Spoke of CFS and Lyme as legitimate diseases. I'm patiently waiting for the 5:30 PST airing. Any thoughts?

We need to thank CBS and Katie Couric for coverage and ask for more!

http://www.cbsnews.com/htdocs/feedback/fb_news_form.shtml?tag=ftr
or
evening@cbsnews.com

At Katie Couric via her twitter page at: http://twitter.com/KatieCouric

At CBS News via their twitter page at: http://www.twitter.com/cbsnews

On Katie Couric’s Facebook page: http://www.facebook.com/KatieCouric

On the CBSNews Facebook page: http://www.facebook.com/CBSNews

 

Yea! PACE and the British government weren't even mentioned. It simply stated that 700 proteins found in our spinal fluid were different from lyme or the general population. Couric talked about proof that it is a real disease despite physician skepticism. We patients already know this. Information and biomarkers can't come soon enough for patients is what was presented.

 

The lead-ins (like our top stories... or next up...) were the best part of the story.Overall quite happy about the story. Wish it had gone into more depth. But still happy. I even called my Mom to watch it.

Lynn

 

We need to thank CBS and Katie Couric for coverage and ask for more!

http://www.cbsnews.com/htdocs/feedback/fb_news_form.shtml?tag=ftr
or
evening@cbsnews.com

At Katie Couric via her twitter page at: http://twitter.com/KatieCouric

At CBS News via their twitter page at: http://www.twitter.com/cbsnews

On Katie Couric’s Facebook page: http://www.facebook.com/KatieCouric

On the CBSNews Facebook page: http://www.facebook.com/CBSNews

Absolutely, Ann! I haven't seen the story but try to write some feedback -- they look at and count these as well.

I would also tell people to SAVE what they write as you can use that as a template for future advocacy stuff.

 

You and Dr. Vernon are far more enamored with these "biomarkers" than I am. How does this get me closer to getting off this bed than all the rest of the research that's being ignored by those in power? Great, we have a shiny new study to go into Pubmed with the other 5000. So what.

I agree with Otis on this. The news mentions new medical findings a lot but whether the information actually turns into something useful is questionable and the tests involved will need validation, might take a while (years likely, hope not) to develop, and get out to your local doctor's office/ clinical lab. My concern with PACE is that docs and other healthcare professionals have been told CBT/GET is the way to treat ME/CFS patients for 20 years (it was what I was taught) and PACE provides further proof of that for them. Your average ME/CFS patient going to your average MD's office will still face the same issues. Not talking about concerns with CBT/GET is like ignoring the elephant (yes, another elephant metaphor!) in the room.

 

These things always go like the wind when you're watching them. And besides that, the item itself was pretty short. Then again, with so much going on in the Middle East it's amazing the story got in there at all.

Couric's lead-in said "evidence that the illness is real" and referenced the reporter on the scene, whose name I didn't catch. IIRC, the voice-over then said that patients have had to endure skepticism, sometimes even from their own physicians, for a long time. Meanwhile here was film of an ME/CFS patient taking her daily meds, and saying that her doctor once rolled his eyes at her, saying that all women get tired. The reporter was indignant and credulous. Cut to Klimas and an incredibly brief description of proteins unique only to PWCs in the spinal fluid. Back to the patient, still taking her meds, and a statement that a solution to this REAL disease can't come soon enough.

I can't recall what symptoms they described: exhaustion was one, and perhaps two more.

Sort of like reading Dick and Jane, if you're a patient who reads the forums .... but I got three phone calls in a row as soon as it ended, so I consider that a success. CBS made mention of the Lancet or any such nonsense. In the wake of the last hideous week, that's a miracle.

 

Yes, not a word about PACE. Honestly, a news story that asserts the real, biological nature of this illness without giving the "other side" except in the vague reference of "it used to be thought of as psychological" is great. Just what we want to see. The lead was great.

I'm sorry if my comments came across wrong. Hard to tell facial expressions and tone through message boards. It really was just a suggestion based on my seven years experience as a newspaper editor. Also, I have been getting some advice from those with PR experience. That's all "the know" I had on this.

A suggestion, and just a suggestion, spread the news of this to other news media. And show that CBS did a story. This will help create the idea that it is a legitimate story. In other words, if one big mainstream news media did it, then there must be something to it. Include your local newspapers, even the small community newspapers. Also, just a suggestion, you might offer the reporter another angle. (Reporters don't want to be left out of a big story, but they don't like to just repeat the work of others.)

Otis, I am not sure, but it seems to me this study fits together with XMRV and all the other studies showing biological abnormalities. They all fit together. Surely this information will help WPI, possibly increase possibility of their getting funding. Think of it, if the people that WPI are studying have a real biological illness, then the idea of it being a retrovirus is more possible. This adds to crumbling down the resistance. This adds to WPI credibility. What creates those abnormal proteins? Add to that the Light study. Those were abnormal protein expressions, right?

I'd be interested on other thoughts on this.

It's like five people putting together a jigsaw puzzle, each adding a piece. There are some key pieces. And certainly, XMRV has to be the big one.

And by the way, the story appeared to me to end up being shorter than they originally planned. Darn Libya.

Also, this is the best timing for refuting the PACE study. This doesn't say the PACE study is flawed and thus doesn't tell anything. Basically, it says this is a biological illness, showing GET and CBT are wrong type of treatments.

These are exciting times.

 

Not bad. I can definitely object to some of it, but I'd say ok; overall a plus. hopefully there really will be a commercial test. we need to get that done already. one of our most important tasks. haven't been following that story, but hopeful.

 

I agree with Otis on this. The news mentions new medical findings a lot but whether the information actually turns into something useful is questionable and the tests involved will need validation, might take a while (years likely, hope not) to develop, and get out to your local doctor's office/ clinical lab. My concern with PACE is that docs and other healthcare professionals have been told CBT/GET is the way to treat ME/CFS patients for 20 years (it was what I was taught) and PACE provides further proof of that for them. Your average ME/CFS patient going to your average MD's office will still face the same issues. Not talking about concerns with CBT/GET is like ignoring the elephant (yes, another elephant metaphor!) in the room.

Thanks for turning what I said into what I really meant to say there.

 

Overall - this was a huge victory for us today! National Coverage on mainstream TV. All positive press. They didn't even give the other side any credibility - it was fantastic.

I just would have loved to see this run longer. Here's hoping that other media outlets will run with this - spinal fluid proteins is a new angle for many reporters to investigate further.