1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

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

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 22, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,013
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Hope posted this on another post

  3. Hope123

    Hope123 Senior Member

    Messages:
    1,142
    Likes:
    539
    Thanks, Cort! My computer was having probs e-mailing you earlier so I'm glad you picked this up!
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    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.....
  5. Mark

    Mark Acting CEO

    Messages:
    4,527
    Likes:
    2,004
    Sofa, UK
    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
  6. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Gawd - got the date wrong (again).

    I think this is the key

    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:)
  7. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    Here's hoping. We just set the tv to record. Fingers crossed and, as the Germans would say, thumbs pressed!
  8. Mark

    Mark Acting CEO

    Messages:
    4,527
    Likes:
    2,004
    Sofa, UK
    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...
  9. Hope123

    Hope123 Senior Member

    Messages:
    1,142
    Likes:
    539
    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!
  10. acer2000

    acer2000 Senior Member

    Messages:
    578
    Likes:
    217
    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.
  11. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    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.
  12. Bob

    Bob

    Messages:
    8,140
    Likes:
    10,509
    England, UK
    Great insights urban... Thanku for representing us.
  13. anncavan

    anncavan

    Messages:
    98
    Likes:
    5
    San Francisco, CA
    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
  14. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    343
    UK
    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.
  15. Esther12

    Esther12 Senior Member

    Messages:
    5,270
    Likes:
    5,483
    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.
  16. Guido den Broeder

    Guido den Broeder *****

    Messages:
    278
    Likes:
    180
    Rotterdam, The Netherlands
    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
  17. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    54
    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.
  18. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    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.

  19. Yogi

    Yogi

    Messages:
    66
    Likes:
    47
    Magical medicine

    THE BEST THING EVERYONE CAN DO IS SEND KATY COURIC VIA EMAIL, FACEBOOK, TWITTER ETC ETC A COPY OF MAGICAL MEDICINE. (It requires no energy to to do this little thing)

    www.meactionuk.org.uk/magical-medicine.pdf

    THANKS!!!
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    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


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

    emphasis added

    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.

See more popular forum discussions.

Share This Page