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

 

CBS piece was on Sky News (Great Britain & Ireland)

I just got a text from someone that the CBS piece on the spinal fluid
research was shown on Sky News (Great Britain & Ireland) between 12.30am and
1am today. At this time of night some of the stations broadcast US TV for
part of the time.

So great to get good coverage. And great it wasn't a piece on the PACE
Trials.

 

This doesn't appear to be Dr. James Baraniuk's study they are reporting on. Instead it is from Dr. Natelson's lab. Different studies... both looking at markers in CSF, however.

 

It was a huge multi-lab collaboration. Per the CAA's report:

"The study is a model for partnership across multiple institutions and funding agencies. It was supported by the National Institutes of Health (National Institute of Allergy and Infectious Diseases, National Institute on Drug Abuse, National Institute of Neurologic Diseases and Stroke and the National Center for Research Resources), the Swedish Research Council, Uppsala Berzelii Technology Center for Neurodiagnostics, SciLifeLab-Uppsala, Time for Lyme, Lyme Disease Association and the Tami Fund. The Pacific Northwest National Laboratory is a national scientific user facility sponsored by the Department of Energy. CFS patients were identified and evaluated by Benjamin Natelson at Albert Einstein School of Medicine. Lyme patients were identified and evaluated by Brian Fallon at Columbia University. Jonas Berquist of Uppsala University in Sweden assisted with data analysis."

 

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.

Tina, we've had so many puzzle pieces for so many years. That's why one more pound of paper doesn't impress me.

Just watched the CBS piece. No mention of PACE which is good - I agree - although that damage is already done.

My perspective, and Cort doesn't agree, is let's find the infection(s) directly instead of secondary, tertiary, and quaduaciary(?) effects. That's why I don't like spelunking for biomarkers.

This study is cool sounding. Neato technology looking at CFS (graphic of a needle going into a patients back) resulting in an impressive-looking multi-color venn diagram that's easily understood at the "50,000 foot" level. The result that can be said with any degree of confidence seems to be that proteins involved in clearing infections are probably implicated.

My $2 thermometer can tell a Dr. this if he's willing to pay attention to my persistence that ongoing fever is important. And if he's willing to actually reach our a touch a lymph node (this touching the patient thing is novel in modern medicine) we're really cooking with Crisco. No need to go to the bench to get back to the bedside here.

For me it comes down to what Dr. Alter said about this being XMRV or some other virus and Dr. Klimas saying that there is no better biomarker than a virus (XMRV) shortly after it was discovered.

It's nice to have validation on the evening news. I'll take it but the game didn't change today and in terms on affecting patient's lives this doesn't offset PACE by a wide, wide margin.

I doubt it swayed an NIH decision-maker about funding the WPI but you never know. Maybe the right phone rang somewhere in the nation tonight.

There may be a day I will (gladly) say I was wrong about this study. I hope so.

 

CBS piece was on Sky News (Great Britain & Ireland)

I just got a text from someone that the CBS piece on the spinal fluid
research was shown on Sky News (Great Britain & Ireland) between 12.30am and
1am today. At this time of night some of the stations broadcast US TV for
part of the time.

So great to get good coverage. And great it wasn't a piece on the PACE
Trials.

It must be nice for a beak from PACE in the UK.

 

Just saw it. Short, but decent.

We need to write 60 MInutes and ask them to do a more in-depth story. Anybody up for that?

 

I think this looks really exciting and just exactly the kind of breakthrough we've been waiting for...there is still so much to understand beyond what XMRV tells us and this is a part of it - and a validated part, that's the key.

Seems to me as good a way as any to challenge the PACE trial in the UK is to push for this story to be published in the UK press again (and name and shame the Science Media Centre if it isn't published in the press, but it should be written up large I would hope after the news coverage), then we can have another round of comments.

Pressure on this one to get this story high up the agenda in the UK press seems appropriate. Our US friends can write to the UK press too of course...telling them all about what the Americans have found out about while we've been studying the treadmill and the couch...get it in their inboxes for the morning...give them some analysis of what it means and what the story is, to add to what they get from the Science Media Centre...and then if we want to talk about PACE we can comment on those stories of course...Cort has a point that positive publicity is not a bad way to counter negative publicity...

 

I wrote them back too. Special hint at that I'm interested from switzerland, Europe. And at those Videos : http://www.gordonmedical.com/aaim_videos.html
With a hint towards how researchers, medical personel alsow gets into problems if they intend to do stuff for CFS.

 

CBS piece was on Sky News (Great Britain & Ireland)

I just got a text from someone that the CBS piece on the spinal fluid
research was shown on Sky News (Great Britain & Ireland) between 12.30am and
1am today. At this time of night some of the stations broadcast US TV for
part of the time.

So great to get good coverage. And great it wasn't a piece on the PACE
Trials.

It must be nice for a beak from PACE in the UK.

Yes (just to remind everyone that most of Ireland, the Republic of Ireland, isn't part of the UK; the bit up the top, Northern Ireland, is part of the UK).

 

Just saw it. Short, but decent.

We need to write 60 MInutes and ask them to do a more in-depth story. Anybody up for that?

Good idea DB...

Here's a link to the video report. People can also leave comments there...

http://www.cbsnews.com/video/watch/?id=7357544n&tag=related;photovideo

...or here, on the transcript page:

http://www.cbsnews.com/stories/2011...0035610.shtml?tag=cbsnewsTwoColUpperPromoArea

 

Yes (just to remind everyone that most of Ireland, the Republic of Ireland, isn't part of the UK; the bit up the top, Northern Ireland, is part of the UK).

Point taken. My wife would have busted me on that too.

 

Off-topic

Point taken. My wife would have busted me on that too.

BTW, anyone (mainly people outside Great Britain and Ireland): for 10 points, What's the difference between Great Britain and the United Kingdom







Great Britain is the big "island" to the east of the two big islands while the United Kingdom is short for the United Kingdom of Great Britain and Northern Ireland also so includes Northern Ireland (as well as some other little islands like the Hebrides off Scotland).

To confuse everyone, all the islands together including the two big ones are called the British Isles even though people in the Rep. of Ireland certainly don't call themselves British.

 

BTW, for 10 points. What's the difference between Great Britain and the United Kingdom.

Isn't that the same thing? I am a clueless American, btw.

 

Okay, I swear to god (or the equivalent)... the answer was not there as I posted my question.

How did it magically appear in those short seconds? Or was it there all along and I totally spaced it?

This is scary. I'm going back to: :In bed:

 

Off-topic

Anyway, I don't think anyone will complain if one gets Great Britain and Northern Ireland mixed up.

But best not to call somebody from the Republic of Ireland (Dublin, Galway, Cork, etc.) British or from the UK (unless they moved country). One way to remember is that a republic doesn't have a monarch (king/queen). It gets more complicated with Northern Ireland (Belfast, etc.) (some people there wouldn't want to be called British, some love their Union Jacks, etc. - best to be extra careful 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 b

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.

You KNOW I think they should have done both! I was probably as upset as you as their initial response to PACE.....I do want to point out that thats like 3,000 articles in Pubmed (or whatever the number is) -that includes letters, comments, reviews, editorials.....

Then there are all sorts of studies - personality studies, CBT studies (lots of those) epidemiological studies, little unrigorous studies that no one cares about and then every year there are handful or more of good physiological studies. So with the kinds of studies that will really tell us something about CFS - there really aren't that many....and how could there be when we are at the bottom of the barrel pf funding at the NIH???

 

You KNOW I think they should have done both! I was probably as upset as you as their initial response to PACE.....I do want to point out that thats like 3,000 articles in Pubmed (or whatever the number is) -that includes letters, comments, reviews, editorials.....

Then there are all sorts of studies - personality studies, CBT studies (lots of those) epidemiological studies, little unrigorous studies that no one cares about and then every year there are handful or more of good physiological studies. So with the kinds of studies that will really tell us something about CFS - there really aren't that many....and how could there be when we are at the bottom of the barrel pf funding at the NIH???

Cort is right that there aren't 5000 or even 3000 research studies showing biological abnormalities in PubMed. (I've even got 8 entries that show up for CFS - no new findings in them). It makes a nice sound-bite but could be misleading if people think there is that much original research.

I don't know what the real figure is but they are spread across all sorts of areas (virology, immunology, endocrinology, neurology, cardiology, autonomic nervous system, gastroenterology, brain imaging, genomics, etc.) while are in a smaller group of areas. Most of the findings aren't that suitable for diagnostic testing.

But I agree that it'd be great if the infection model is the correct one for me and everyone else.

 

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.

If this particular study is going to work then it is going to take years. But it doesn't have to take forever - 'all' we need to do is get a sufficient number of researchers interested in this so that there are groups of researchers taking on the same subject rather than I group taking forever to pin something down.

On that note the news is kind of encouraging. As Dr. Vernon pointed out this study involved researchers from several different locales - the only one I recognized was Natelson. That means a bevy of new researchers just got inserted into this field.

Look at all these groups - and they just did a successful CFS study! That's really good news because what we need above everything other than XMRV validation - are more faces in the field.

The study is a model for partnership across multiple institutions and funding agencies. It was supported by the National Institutes of Health (National Institute of Allergy and Infectious Diseases, National Institute on Drug Abuse, National Institute of Neurologic Diseases and Stroke and the National Center for Research Resources), the Swedish Research Council, Uppsala Berzelii Technology Center for Neurodiagnostics, SciLifeLab-Uppsala, Time for Lyme, Lyme Disease Association and the Tami Fund. The Pacific Northwest National Laboratory is a national scientific user facility sponsored by the Department of Energy. CFS patients were identified and evaluated by Benjamin Natelson at Albert Einstein School of Medicine. Lyme patients were identified and evaluated by Brian Fallon at Columbia University. Jonas Berquist of Uppsala University in Sweden assisted with data analysis. The collaborative effort, use of new technologies for discovery and willingness to openly share data to advance the field represent an inspiring 21 st century research initiative worthy of high hopes.

And - Otis might want to take note of this and get some cheer from it - as Dr. Vernon noted the CAA with their BioBank has samples sitting there waiting for researchers to analyze them. I don't think they have spinal fluid but they do have really well characterized samples that researchers can start looking for evidence of the proteins or complement activation or whatever. That cuts down the research time ENORMOUSLY and is one of the reasons I have been so high on the CAA's research program.

The Association’s scientific director, Suzanne D. Vernon, PhD, notes, “I am particularly excited about this study and the new avenues it opens. Pairing this treasure trove list of proteins with the biological and clinical resources in the Association’s SolveCFS BioBank will quicken the pace at which these biomarkers can be verified and validated, hopefully shortening the pipeline from benchside discovery to bedside application

 

While it's good to see some positive national television press coverage on ME/CFS, I think we need to be careful about being complacent and continue the pressure on the government, media, etc.

It's not the first time that ME/CFS was pronounced real -- remember the 2006 CDC/ CAA press releases/ ads about ME/CFS being real and how that turned out? Maybe it changed a few minds but I'm not sure if it had a great effects -- especially since it did not change the CDC putting out research on how childhood trauma/ personality disorders cause ME/CFS and didn't result in them doing more or promoting more biological research on their website and announcements. It doesn't change doctors saying "Ok, so it's a real illness but you can still get better from it using cognitive therapy and exercise, like you do with other chronic illnesses."
It didn't seem to affect that one NIH talk that was presented this week that anyone has yet to see.

I'd like to see researchers/ doctors say instead " we need to find a biological treatment" and recognize CBT/ exercise are not just not beneficial but actually HARMFUL for many people. We should ask "How is saying it's real this time different from last time? What can we do further to make sure we capitalize on this coverage?" We should be holding our advocacy organizations accountable too.

 

CBS report on CFS

Hope posted this on another post

Here is my thank you and concern email sent to CBS News: Feel free to use any part of it.

Dear Katie Couric,

First I wish to thank you for doing the story of the New findings in CFS patients, where there is now more biological proof that CFS is real and is life changing for those who suffer with it. I have been ill with ME/CFS for over 25 years now. Your story made my day (Year). We patients can only pray now that the science can be pursued to find life altering treatments. I have been an ME/CFS activist trying to get our federal health agencies to fund more than $5 Million annually for an illness that costs the U.S. over $ 20 Billion annually. That seems moronic as I write it, but it is a fact.

I was also told you would be doing a story on the recent PACE trial from the UK. I hope you have contacted researchers here in the U.S. to get a proper understanding of that trial, such as the Oxford criteria is not used by the vast majority of ME/CFS researchers worldwide.

As I stated earlier I have been ill with ME/CFS for over 25 years and I have tried every treatment available including CBT(cognitive behavioral therapy) and GET(graded exercise therapy ). I only deteriorate with GET(graded exercise therapy) and CBT(cognitive behavioral therapy) as they both drain energy I may have at that moment. I do not fit the Oxford criteria (which is not used by the majority of ME/CFS researchers and stresses fatigue without the specific inclusion of several other symptoms), I have more symptoms than just fatigue, and so, the PACE results do not apply to me.

ME/CFS researchers like Dr. Daniel Peterson of Incline Village NV, Alan& Kathy Light at the University of Utah, Dr. Leonard Jason (DePaul University, Chicago), Dr. Nancy Klimas (the University of Miami), Dr. Chris Snell (University of the Pacific, California) can tell you about what happens biologically to ME/CFS patients when they exercise.


Again Thank you for airing the CFS Spinal fluid protein Study,

Robert Miller

Reno, NV