The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Louisiana (USA) radio station to have a programme on ME/CFS on March 30

Discussion in 'General ME/CFS News' started by Dolphin, Mar 28, 2017.

  1. Dolphin

    Dolphin Senior Member

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  2. Denise

    Denise Senior Member

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    From the post:
    "Airs Thursday, March 30, 2017, at 6 p.m. We all get tired, but when generalized fatigue becomes a problem for six months or more, it may be Chronic Fatigue Syndrome. Tune in Thursday at 6 p.m. for Health Matters: Mental Health Edition. Dr. Mark Vigen, psychologist, and Dr. Shelly Visconte, licensed counselor, will host our conversation on Chronic Fatigue Syndrome, with guest Dr. Thomas Pressly. Questions will be taken during the show at 1-800-552-8502 or via Twitter @rrrpublicradio."

    Preaching to the choir - Generalized fatigue for 6 months is not ME. And while I realize this is only a blurb and they can't fit a lot into those - it is inaccurate at best.

    icyai - Dr. Pressly is a rheumatologist.
     
  3. Riley

    Riley Senior Member

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    Wow, how did you hear about this (just curious)? This is in my hometown, my mom was just telling me about it.

    Dr. Pressly is a family friend, and I saw him in the first couple years of my illness when I was still seeking a diagnoses. He is a wonderful, compassionate doctor who spends a lot of time with his patients. He is also involved in a lot of extra work treating and helping sick children.

    Having said that, I can't vouch for how much he knows about CFS and the description for the show is not terribly promising.
     
  4. JayS

    JayS Senior Member

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    Well, I think it's safe to say they didn't really spend much time discussing 'chronic fatigue syndrome.' Most of the time seemed devoted to Fibromyalgia, Rheumatoid Arthritis, Lupus, and some common symptoms including chronic fatigue. But I would say it was done in any sort of offensive way. Certainly had no problem with Dr. Pressly. I do suspect he's not exactly an expert in ME/CFS; and he spent more time dealing with specific issues raised by callers (who were not ME or even "CFS" patients) than you're used to hearing on programs like this that tend to shy away from offering medical advice.

    I have a feeling that the host knew that it would be easy to say the wrong thing and get people angry, especially ME/CFS patients with any knowledge of the history and/or politics of the disease. The term ME was never mentioned; neither was PACE, the IOM report, or any other recent research (Epstein-Barr was discussed, though). When the topic of exercise came up, it was addressed as a generally good thing for just about everybody, with no mention of any controversy surrounding its effects in ME/CFS. It just seemed to me that they were being careful, because if not I would've expected to hear boilerplate CFS info & advice.

    Better, much better, to have simply not delved into it at all, than to ignorantly forged ahead with harmful info from CDC or Mayo Clinic. That said, it was rather odd to listen to an hour's worth of a medical show that was advertised as being about CFS when it was really only peripherally referred to at all.
     
  5. Kati

    Kati Patient in training

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    Thank you for reporting, @JayS, that is why I liked your post. But it sounded hideous and head banging kind of talk. :bang-head:
     
    Invisible Woman likes this.
  6. Effi

    Effi Senior Member

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    Thanks for posting @JayS. Sounds like they announced the program being about CFS, but what they actually meant was chronic fatigue.
     

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