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Blog article in Psychology Today

Discussion in 'Action Alerts and Advocacy' started by Kati, Nov 18, 2009.

  1. Kati

    Kati Patient in training

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  2. Marylib

    Marylib Senior Member

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    Good catch Kati

    If anyone bothers to read the comments, we are already well underway!
     
  3. Kati

    Kati Patient in training

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    My secret for "catching the articles"

    If you want to be on top of the latest information, you can set up a "google alert" (google that) by entering a key word or a name of what you want to follow. In this case, every time there is a mention of Chronic fatigue syndrome, I am being alerted via e-mail. In the last few days since I have started, I was sent to quite a few blog articls, sone funny and some compelling, and also some crappy articles like this one.

    Now try being alerted on Bill Reeves, XMRV, Whittemore-Peterson Institute, etc!!!
     
  4. _Kim_

    _Kim_ Guest

    Kati, thanks for posting this. I had a bit of a backlog of anger and needed a place to sound off. I am so proud of this patient population for, despite the cognitive challenges, you are some of the most informed, articulate and compelling writers out there. I would not want to be Dr. Borigini right now. There's a whole lot of venom coming his way.
     
  5. Kati

    Kati Patient in training

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    You're welcome Kim. The more I read that article, the more offended I am. Worst of it all is that dr is a rheumatologist!!!!! OMG- He should lose his licence to practise medecine with that kind of article.
     
  6. _Kim_

    _Kim_ Guest

    Kati, it's bad enough that he practices medicine, but the worst part is that he is a professor who is responsible for educating the next generation of doctors.

     
  7. Cort

    Cort Phoenix Rising Founder

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    He's also the consulting doctor at Health Central for pain. I wonder if he gets paid for piecework - he writes there as well. I wonder if he was committed to producing something so he threw out this amazingly inadequate piece on ME/CFS. There was nothing there there.
     
  8. Kati

    Kati Patient in training

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    You can also complain to Psycology Today about this blogger/blog post. Her eis the link-

    http://www.psychologytoday.com/feedback

    This is about protecting ourselves. No more BS to be spread around.
     
  9. Jerry S

    Jerry S Senior Member

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    Excellent comments!

    Thanks Kati, Kim, and all the other commenters. This type of CDC party line "information" can no longer be left unchallenged.

    The quality of the comments made me proud. Thanks again!
     
  10. Koan

    Koan Be the change.

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    Ok, I gotta say, I'm relieved.

    Psychology Today has published really terribly inaccurate and damaging things about ME/CFS in the past. This represents a HUGE step forward for them. It's a change of position of epic proportions.

    Yes, as Cort so aptly says, "there is no there there" but, for them, it is a total about face.
     
  11. Hysterical Woman

    Hysterical Woman Senior Member

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    Kim

    Hi Kim,

    I was able to get to the comments by clicking the link - try again?

    Good Luck,

    Maxine
     
  12. _Kim_

    _Kim_ Guest

    Thanks Maxine, it is working again.
     
  13. Chris

    Chris Senior Member

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    Psychology Today--alas

    Kati--thanks--I improved my mood for today by adding my 2c worth--made me feel better! And thanks for the tip about a Google Alert too. Any news on that rheumatologist yet? PM if you prefer when you see her--I am thinking hard about what to do next--my gp has just failed totally, and the rheumatologist I saw, while competent and sympathetic, acknowledged I knew more about CFS than he did, and had no helpful advice. Best, Chris
     
  14. Kati

    Kati Patient in training

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    You're welcome Chris, I am happy so many people replied and reacted the way they did, some calmly and systematically and some others perhaps like me emotionally- but it's all good- the goal is to get a reaction, a response and especially a change. I have sent a feedback to Psychology Today about the blog so I am sure it will be reviewed and hopefully the leaders of the magazine will start checking out the litterature.

    On a personal note, rheumy appt is in January- not much news other than being on a steady decline-

    Thanks to all and keep on writing your opinion, every voice count.
     
  15. dipic

    dipic Senior Member

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    Ouch, I almost feel bad for the guy... he's getting it pretty rough in the comments. It's okay to express your displeasure but try to be respectful while being informative. (Most people are; just saying.)
     
  16. Kati

    Kati Patient in training

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    Interesting that you say that, I agree being respectful is nice, but there are a lot of doctors that are not and have not been respectful and professional towards PWC for the last 25 years. I haven't seen any f-words or S word in any of the comments, so that's a good thing. I think it's time that PWC raise their voices and be heard and that the message goes across.
     
  17. Koan

    Koan Be the change.

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    Yes, but, this guy took it upon himself to say, in Psychology Today where it has not been a popular position, that it is a physical illness and we are not crazy.

    For him this may have been a bold move, a brave blog in our defense. Then he gets raked over the coals.

    I doubt we'll be seeing any more from him on this topic and I really can't blame him.

    ETA Unless he wants to comment on the reaction this blog got and I wouldn't blame him for that either. Sorry everyone, but I don't get this at all.
     
  18. Kati

    Kati Patient in training

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    Koan, I don't understand that you are taking his side. This is a man that doesn't seem to have knowledge of CFS, or archaic ones anyways, it is poorly written and doesn't have a goal in mind. He shot himself in the foot! I can't understand a man that is teaching new doctors in this specialty and not getting the latest facts about the disease.

    On the other hand we have some increasingly angry patients that have been waiting to be treated for decades, have litterally lost their lives, and considered suicide, lost their job, their houses, their family and friends. This article was the best opportunity to unleash a bit, and say what they truly think. I think that doctor just asked for it.
     
  19. Mark

    Mark Acting CEO

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    Hmm...I've re-read his article and I fear you may be right Koan, he does say some good things in the article, given the context you provide. I must admit that my own reaction was probably mainly to the word "psychology", and to the fact that CFS just doesn't belong there.

    I think there are a few justifications for having a go:

    1. He didn't say it is a physical illness, he said it is a "legitimate medical condition". If he wanted to say it is physical, he could have said so in more unambiguous terms. I think Wessely would be happy to say it is a "legitimate medical condition", that's why I attached no importance to that phrase.

    2. He wants timely "therapy". In this context, what does "therapy" mean to his readers?

    3. No mention whatsoever of XMRV, nor any citing of known biomarkers for CFS to back up the assertion that it is "real". That would be the case to make if you believe CFS is physical, surely?

    4. Are you happy with the following recommendations he makes for treatments? He says some very good things actually, but the treatments he mentions (as CDC recommendations but he doesn't doubt them or suggest alternatives) include "aggressive attempts at maximizing sleep hygiene, through avoiding daytime naps, caffeine and large meals before bedtime. Exercise in moderation is helpful...Anti-inflammatory medications are helpful in taking the edge off the pain....". Has anybody here found these measures helpful?

    I have to be fair: this is great: "psychological counseling can help with coping mechanisms", because he's perhaps saying something quite radical in the role he's giving psychological counselling here. And this is great too: "Always, working with the patient allows for wellness, improves the patient mood, and it is something we as doctors should know by now makes for better patient outlooks, and outcomes".

    So overall, it seems to be true that we have attacked a good, well-meaning guy who, relative to the fields he works in, is probably one of those who's been on our side. The problem is, though, that he is still recommending harmful treatments, and at the end of the day, CFS doesn't belong in this magazine nor in the psychological field. The only articles we want to see in Psychology circles on CFS are ones explaining why and how they got it wrong, and explaining that it really is, after all, a physical illness. If he didn't express that message unambiguously to us, then I doubt whether he persuaded any of his readers that CFS is physical not psychological.

    Still, I'm going to take this as a lesson and be a bit more cautious in future. Keep those google alerts coming though Kati, it's a very powerful tool we have in our hands here and it may be one of the most valuable jobs we can all do.
     
  20. shrewsbury

    shrewsbury member

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    I was up late last night trying to think of how to express my feelings on this thread. Most of today as well. No success and not sure how well Ill be able to do it now. I think Koan has come closest along with Marks last two paragraphs.

    I love how so many of us are speaking up, trying to do our bit. And of course we have angry phases. Weve been ripped out of our lives and left debilitated in a world that is difficult for friends and family to understand or even stay part of, has medical and political systems that seem to come from the theatre of the absurd or down the rabbit hole, and often with financial challenges when were least able to cope. Its devastating.

    For me, I'm trying to figure out effective advocacy - a brand new world for me. With such a little parcel of energy for it, how can I get the most 'bang for my buck'? What is the context of the situation?

    Also, as my decision-making and thought processes arent the clearest, Im trying to learn to think 10 times, act once. Whats that adage, wisdom is what we gain from our mistakes?

    I do find that honey usually works better than vinegar though. We want our voices heard. Often lashing out will stop people from reading further both the intended recipient and other readers. It sometimes also prejudices them against finding out what is really true all they hear/read is the anger, they are turned off, and a label is assigned to the angry CFS complainers. I would like to maintain that impression Kim spoke of, of informed, articulate and compelling writers.

    The context here is that its not a great article. But its a major shift for Psychology Today. Part of the shift may have come from the number of responses to Dr Teitelbuams article a few weeks ago. Maybe the old sandwich approach of recognizing what is good in the article as well as pointing out its deficiencies??? Rather than antagonize Dr Borigini, Id rather educate him; encourage him to speak more of the truth. If hes writing for medical sites and training teachers, lets get him on our side!

    I dont know. Im a baby at this.

    I dont believe there are any sides here within the forum. I think we all have shared goals of having medical and government systems that work, and of finding a cause, treatment and hopefully a flat out cure.

    Well thats my two cents worth. I love all the advocacy energy. Hope I will learn how to use mine as effectively as possible.

    islandfinn:)
     

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