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

Comments

Hope posted this on another post

ALL HANDS ON DECK!

I've been told by 2 people that Katie Couric will be reporting on the UK PACE trials tomorrow on CBS Evening News. This will be the first national evening news report I've seen in years on ME/CFS.

We do not know what angle Katie will take or how balanced her report will be but YOU can try to make it more balanced. Write or call CBS Evening News tonight or tomorrow and tell them your concerns about the PACE trial. In particular, share your non-improvement or deterioration with graded exercise therapy or cognitive behavioral therapy. Tell her you 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 other symptoms), you have more symptoms than just fatigue, and therefore, the PACE results do not apply to you.

Refer her to ME/CFS researchers like the Alan/ Kathy Light at the Unversity of Utah, Dr. Leonard Jason (DePaul University, Chicago), Dr. Nancy Klimas (the University of Miami), Dr. Chris Snell (University of the Pacific, California) to talk about what happens biologically to ME/CFS patients when they exercise.

Go team! [cheerleading icon here]

CBS Contact info:

http://www.cbsnews.com/stories/1998/...l?tag=hdr;cnav

[Note: even if the story gets moved to another day, at least CBS will be left with a story they might follow and this is a chance to counteract the damaging media reports we have already encountered]

[Feel free to copy and re-post this message elsewhere without my user name! Thanks!]
 
Thanks, Cort! My computer was having probs e-mailing you earlier so I'm glad you picked this up!
 
This is so scintillating.. Nancy turns things around AND we get a new study coming out. ..

Thanks Hope - Hope is the word of the day I think :) I hope this works out.....
 
I guess the title should be Feb 23rd Cort? How time flies eh...another one to put down to brain fog...unless of course you are deliberately spreading devious misinformation again. :D

"Abnormal proteins in the spinal fluid indicating neuroinflammation".

Not familiar with Dr Baraniuk's previous work, but it sounds like exciting news...independent confirmation being so important.

What might be the implications of that?

Any clues whether it's a distinctive feature, not known to be present in other conditions?

What rate in healthy controls? Potential biomarker; potential test?

Abnormal proteins in the sense of something new not previously observed in medical science? Or in the sense of something malformed or deformed, something damaged?

Would this neuroinflammation be likely to be a fundamental and central part of the condition, or just one of many types of damage?

And most importantly, if this was confirmed how would it play with a Wessely? Would it be natural and easy for psychs to say this is part of the process that false illness beliefs cause, or would it be something that kicked them into the long grass?

Please say it would be something that would kick them into the long grass...:D (only if it's true, of course :D).

Makes me start wondering...if we get real progress soon, something definitive in the biomedical arena, something that validates the disease and opens up the field...then of course that would change the whole game, and what would be interesting would be the effect on the psychs and in particular on the CBT world. I think we can guess what Kilmas will say about CBT, which will fit with your line I presume Cort, that there is a small effect and it can be helpful for some people...though as you know I'm a bit more sceptical about CBT and I suspect that even the perceived benefits for a small subset of patients may be illusory and a kind of placebo-like phenomenon, and with so much evidence that CBT (or, at least, 'bad CBT') can be dangerous to people with more tightly-defined ME and with the most serious conditions, I think the evidence even from PACE says to me that the risks of recommending this as a blanket policy outweigh the benefits.

So for me, what you mention of the news report highlights the question again: is there going to be any place for CBT in ME/CFS in the future, once we have biomedical validation of the disease? I rather think the line should be: that it should only be recommended for people with specific coping issues or depression, anxiety etc as well as ME/CFS...once the subset who do (claim to) respond have been identified and characterised...

Hope it's a really good report for you guys to counteract the insidious trash we keep infecting you with from the other side of the pond. :D
 
I guess the title should be Feb 23rd Cort? How time flies eh...another one to put down to brain fog...unless of course you are deliberately spreading devious misinformation again. :D

Hope it's a really good report for you guys to counteract the insidious trash we keep infecting you with from the other side of the pond. :D
Gawd - got the date wrong (again).

I think this is the key

So for me, what you mention of the news report highlights the question again: is there going to be any place for CBT in ME/CFS in the future, once we have biomedical validation of the disease? I rather think the line should be: that it should only be recommended for people with specific coping issues or depression, anxiety etc as well as ME/CFS...once the subset who do (claim to) respond have been identified and characterised...
This disease is going to be subsetted (subsetted?) at some point and there will be this subset I imagine. I just listened to Toni Bernhardt - she said she had been to all the doctors including Stanford, which must mean Montoya, and they think there are four or five prominent subsets.... White is working on subsets in the PACE. Now I know White is a dark name but if he can find that subset then that helps everybody.....Any subset found - helps all the other subsets....because it clears the playing field that much more.

(Just like the Yanks to have to clear up the Brits mess! :rolleyes::rolleyes::rolleyes: I hope we do!!! :thumbsup::thumbsup::thumbsup:)
 
Here's hoping. We just set the tv to record. Fingers crossed and, as the Germans would say, thumbs pressed!
 
I've always said that CBT was a positive experience for my depression and anxiety. Part of the reason for the strength of my feeling and committment here is because my own experience involved overcoming depression and anxiety.

I attribute that success to one or both of (a) the CBT techniques I learned in a group therapy context (I believe strongly in group therapy of all kinds as well - the communication with people in similar situations to myself was vital to the process of coming to terms with, recognising and de-stigmatising my depression) and (b) citalopram, an anti-depressant my GP recommended as something new with a low rate of relapse - a decade on I can still sometimes feel myself begin to slip towards depression, catch myself, and pull myself round...but I don't know whether the med or the CBT gave me that ability, or both.

So I'm powerfully aware that:

1. The main factor underlying my depression and anxiety was the hopelessness and despair I felt at the knowledge that I was seriously ill, and my doctors weren't taking my illness seriously. I felt hopeless, powerless, abandoned, and the clear message to me was that nobody believed my symptoms were real and nothing would ever be done about it: I lost the support of friends and family as a result, as well, and all of that was so devastating that it was clearly the cause of my depression, that's what I always thought about when I felt those 'feelings of doom', and I was suicidal because I saw no hope.

2. Having resolved those issues I came out mentally stronger than before I had got sick: it had strengthened my mental character in a lasting way, and relieved much of what ailed me...and yet all of my core physical symptoms remained.

So I was able to draw the distinction between the two, and understand the nature of the overlap, and that's a massive part of the insight I wanted to share when I found PR.

What I can say, then, is that at least for me: medical neglect was the main cause of my anxiety and depression, and CBT techniques were probably part of what helped cure my depression. A kind of stick and carrot approach, eh? Screw them up, then bounce them over to the psychs to fix them. Interestingly, it was the psychs' advice to the doctors that was what caused the doctors to behave in such a way as to make me sick in the first place: so they have been systematically creating patients for themselves to then cure...each time validating the theory that caused the problem.

One group got paid out of my taxes for making my illness worse through their attitude, and then another group got paid out of my taxes for resolving the mental trauma they'd created. Meanwhile another group I didn't know about got paid to do research to back all this crap up. All very well-meaning, perhaps, but not a very cost-effective strategy for an overburdened healthcare system...
 
Mark, you're in the UK but CBS/ Katie Couric needs to hear from people like you and that UK-style treatment didn't resolve your ME/CFS symptoms.

The fact that CBT did work for your depression/ anxiety speaks for what CBT can help with BUT NOT WITH ME/CFS.

Copy and paste some of what you wrote and send it!
 
She better talk about XMRV and the fact that this has always appeared to be an infectious illness. If they just do a bunch of hand waving about inflammation and psych stuff it will be really bad for us. Especially after how hard the PACE trial PR has come out to trash CFS as a real illness without a definitive biomedical cause (even though their paper came to no such conclusion, not did it even study that). Klimas knows how to bring out the guns with respect to the viral cytokine signature, response to antivirals, etc... the question is will she? And if she does, will they edit it out?

I actually think we may be saved by the fact that new stations these days attempt to stand up a point-counterpoint/conflict. It has the effect of telling both sides of a story, even if its a false equivalency and just for ratings.
 
I sent a letter. I encourage everyone to send a letter - even if you can't make it perfect or complete - even if you can make only ONE point or mention ONE aspect of your personal experience.

Don't try to cover all the problems with the PACE trial, every symptom you've ever had, or the whole universe of discrimination we face. Just mention something you feel you can speak to. Those of you in the UK should ABSOLUTELY write in and describe experiences you've had with GET and CBT and otherwise describe the discriminatory political climate you face.

I wrote a letter focusing on two main points: the questionable ethics of "therapy" designed to talk a patient out of believing they are sick (with quotes from the CBT Manual from the PACE trial, and attaching the actual manual document), and the disease model that this "therapy" is based on - that patients *mistakenly* fear and avoid activity. I asked whether this would be appropriate "therapy" to help people with other serious diseases - perhaps therapy to help diabetics overcome their "fear" of eating huge meals laden with fats, carbohydrates and sugars; to discourage them from "focusing on their symptoms" by monitoring their blood sugar; and to help them understand that if they feel bad after eating this way, it's just a passing feeling and it doesn't mean they are actually harming themselves.

Then I talked about the published research by the Pacific Fatigue Lab, attached one of their papers where it explicitly discusses how their findings contradict theories of deconditioning and kineisophobia, and then attached my own PFL report. (Specifying that my personal medical information was not for publication without my express prior permission. Be careful of this when emailing the press; you are on the record unless you specify that you are not!)

Perhaps too late to make any impression, but I think we all should do whatever we can.
 
I wrote a letter focusing on two main points: the questionable ethics of "therapy" designed to talk a patient out of believing they are sick (with quotes from the CBT Manual from the PACE trial, and attaching the actual manual document), and the disease model that this "therapy" is based on - that patients *mistakenly* fear and avoid activity. I asked whether this would be appropriate "therapy" to help people with other serious diseases - perhaps therapy to help diabetics overcome their "fear" of eating huge meals laden with fats, carbohydrates and sugars; to discourage them from "focusing on their symptoms" by monitoring their blood sugar; and to help them understand that if they feel bad after eating this way, it's just a passing feeling and it doesn't mean they are actually harming themselves.

Then I talked about the published research by the Pacific Fatigue Lab, attached one of their papers where it explicitly discusses how their findings contradict theories of deconditioning and kineisophobia...
Great insights urban... Thanku for representing us.
 
Updated blog:
http://lannieinthelymelight.blogspot.com/2011/02/mecfs-on-cbs-evening-news-with-katie.html

Tell your story to CBS:
Please send your experience, whether it be about yourself as a patient, caregiver or loved one, to: http://www.cbsnews.com/htdocs/feedback/fb_news_form.shtml?tag=ftr, and to evening@cbsnews.com

Reach out to Katie Couric via her twitter page at: http://twitter.com/KatieCouric

Reach out to CBS News via their twitter page at: http://www.twitter.com/cbsnews

Tell your story on Katie Couric’s Facebook page: http://www.facebook.com/KatieCouric

Tell your story on the CBSNews Facebook page: http://www.facebook.com/CBSNews

Suggested tweets:
@cbsnews ME/CFS patient “feels every day significantly the same way an AIDS patient feels 2 months before death" Dr. M. Loveless #mecfs

@katiecouric More people suffer from ME/CFS in the US than AIDS, breast cancer and lung cancer combined #mecfs
 
If this is a validation of the Dr. Baraniuk's spinal fluid study we're in real luck because we've heard that his own validation of the study should be coming out shortly. Thus we may have two studies coming out one after another indicating neuro-inflammation is present in the brains of people with chronic fatigue syndrome. As hard as it is to get two studies to agree this would be a huge win from two respected researchers
What, a real validation study? That would be something. CFS research often looks like one interesting but unconfirmed finding piled on top of another. I look forward to seeing the results.
 
It would be great if they were aware of the sorts of statistical manipulation that had gone on in the way Pace result were presented. Does anyone have an inside contact they could inform of these things? If they claim 1/3 of patients recover with CBT or GET, it will be a pain. It would be interesting if their was some discussion of the fact that the beliefs Pace's CBT component encouraged in patients now look to be almost certainly false... is it acceptable to lie to patients if it helps them feel happier? I'd have thought a new show would be interested in those political issues.
 
In 1996, a neurologist found abnormal proteins in my spinal fluid. He refused to include that in his report because he did not believe that ME exists.

I found out about that because I asked questions. He still denied me the data. It makes me wonder, how often abnormal findings remain unreported without anyone knowing.

Regards,

Guido den Broeder
www.me-cvsvereniging.nl
 
Yes, if anyone has any inside contacts in the media, please alert them to what is happening.

It seems very odd that this will be on the CBS evening news days after this CBT/GET study was published and plastered all over MSNBC.

Anyone who has a twitter account- send kate Courice short messages with facts proven by research! And all Facebook as well.
 
Thanks Ann for the Contact info - NOW we watch and see what is said- then react appro

Hit Ann's contact info now and make sure that CBS portrays ME/CFS, etc in a very accurate way.

Updated blog:
http://lannieinthelymelight.blogspot.com/2011/02/mecfs-on-cbs-evening-news-with-katie.html

Tell your story to CBS:
Please send your experience, whether it be about yourself as a patient, caregiver or loved one, to: http://www.cbsnews.com/htdocs/feedback/fb_news_form.shtml?tag=ftr, and to evening@cbsnews.com

Reach out to Katie Couric via her twitter page at: http://twitter.com/KatieCouric

Reach out to CBS News via their twitter page at: http://www.twitter.com/cbsnews

Tell your story on Katie Courics Facebook page: http://www.facebook.com/KatieCouric

Tell your story on the CBSNews Facebook page: http://www.facebook.com/CBSNews

Suggested tweets:
@cbsnews ME/CFS patient feels every day significantly the same way an AIDS patient feels 2 months before death" Dr. M. Loveless #mecfs

@katiecouric More people suffer from ME/CFS in the US than AIDS, breast cancer and lung cancer combined #mecfs
 
Worried about Klimas

I am extremely concerned about Nancy Klimas speaking about CBT and GET. She didn't do that much better than CAA in her press comments on the PACE trial. She did mention working within the energy envelope. But, like McCleary she agreed with Peter White that (the evil version of) CBT and GET studied were moderately beneficial.

http://health.usnews.com/health-new...-help-fight-chronic-fatigue-syndrome?PageNr=1

emphasis added

White noted that all the treatments were equally safe, and serious reactions were rare.

"Patients now have a choice of two moderately effective and safe treatments that can help them towards a healthier life," he said.

Dr. Nancy Klimas, chief medical officer at the Chronic Fatigue Center at the University of Miami Miller School of Medicine, noted that the merits of various therapeutic approaches to chronic fatigue syndrome are still a matter of debate.

"But here Dr. White is saying that cognitive behavioral therapy and graded exercise are moderately helpful, but not curative," she said. "And I would agree with that."

"On the other hand, it's also important to note that when we talk about helping patients increase their activity levels, we're talking about people who have very limited amounts of energy," Klimas added. "And you have to work within this 'energy envelope,' because if you push beyond the threshold they will relapse. So often, what we're talking about is about five minutes of exercise before taking a rest."

"In any case, I look at this as a first step," she said, "and anticipate more effective therapies, based on a better understanding of the biology of the illness, in the future."

http://www.medicinenet.com/script/main/art.asp?articlekey=126110

emphasis added

CBT, Exercise Part of CFS Treatment

Nancy G. Klimas, MD, professor of medicine, microbiology, and immunology and director of the Chronic Fatigue Syndrome Research Center at the University of Miami Miller School of Medicine, says that CBT and exercise can be an important part of the treatment for CFS but should not be looked at as a cure-all.

"If this helps them a little, that's great, and if we can find something that gets at the underpinnings of the illness itself, that's great as well," she says.


In the U.K., where the study was conducted, CBT and exercise are both recommended in national treatment guidelines, and are all that are offered to people with CFS there, she says.

"If you come to see me for CFS, I can give you CBT and exercise, but that is not my primary focus," Klimas says. "I will look at your sleep disorders, check your immune function, and look for and treat active infections that are treatable."
There is a reason people are extremely mad at McCleary for saying these type of things: they are not true and they really harm us. This study will probably result in a lot of iatrogenic morbidity and mortality.

GET and the evil version of CBT are clearly harmful, NOT BENEFICIAL for ME ("CFS"). This MUST be stated unequivically. These are the usual lies from White and Sharpe. It is just as unacceptable for her to back up their lies as it is for CAA to do so.

As urbantravels reminded us, this version of CBT is the one where the patients are told they have no physical illness and that they have a phobia of movement and that the only proven treatment for ME is to get over this fear of movement and constantly ratchet up their exercise. This is, as we know, the exact opposite of an effective, safe and ethical treatment.