Thought for the Day:

Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.

- Emily Dickinson

Friday, April 8, 2011

NIH meeting on ME/CFS

I watched much of this two day meeting sponsored by the NIH (National Institute of Health in the United States) looking at M.E./chronic fatigue syndrome: https://www.infinityconferences.com/InfiniBase/Templates/157557/Agenda.htm

I won't go into great detail because you can watch it all online - the talks will be posted with video files. Here's a few of my take away thoughts:

  • I was impressed by much of the science as well as many of the scientists (who are also obviously patient advocates)

  • It made me sad to see how varied and heterogeneous the understanding is, and how far it seems we are from adequate treatment of any kind.

  • My specialist uses the analogy of the blind "men" and the elephant. All these researchers are describing the part of the elephant they "feel", but none of them understand the whole. Luckily it seems many are willing to colaborate and/or use systems approaches.

  • The patients who spoke - some of them brought me to tears.

  • I thought Nancy Klimas was amazing - she shared important work, has a handle on treating patients, and also had an agreeable and cooperative attitude. I also really enjoyed Alter's sense of humour. He did well dealing with the contenious issue of XMRV research.

  • In all politeness I won't mention the scientists I was unimpressed with, but there were obviously those there that won't be collaborating and considering other's research in order to understand the big picture and move things foward.
One question that was asked (of patients) was that if one aspect of their illness could be treated, what they would want targeted? I'm going to make this the next poll here on my blog.....but feel free to comment and elaborate if you want. In all honestly, I would expect we all answer that we want to be "better", not have only one aspect of the illness treated.

Now, on a personal note, listening to these talks completely exhausted me and I've been feeling quite ill anyways. However, I couldn't seem to keep myself away from engaging, despite the fact that at times I was too dizzy to look at the screen.....so stupid. And I'm supposed to be writing a paper.
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7 comments:

  1. jenjiApril 8, 2011 at 6:48 PM

    Oh, great! Thanks for the link. I'll watch it over the weekend.

    By the way, thanks for asking, I'm feeling a little bit better energy wise. Thinking about having another steroid injection for the other issue in the next month or so.

    Day by day. Doing the best I can.

    jenji

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  2. upnorthApril 9, 2011 at 12:26 PM

    Jenji, I don't think they have posted the videos yet, but some of the talks are on youtube already.
    hope your energy trend continues - like you say, it's a day by day thing.

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  3. Sue JacksonApril 9, 2011 at 12:57 PM

    So funny that we both used the same analogy! I suspect that one is appropriate in all branches of scientific and medical research! That's why a workshop like this is such an important event.

    I forgot to mention the patients in my summary - I was sobbing through all three testimonies! I think the doctors and scientists in the room were touched, too.

    As for the question, I would have answered differently...I have always felt that the exercise intolerance is the most limiting aspect of CFS. Without that, my life would be almost normal. That's why I was so excited about the studies being done at the Pacific Fatigue Lab - for many years, they were the only ones who truly understood PEM.

    Then again...I also feel that the immune system dysfunction is at the very heart of CFS - fix that and the rest of the body can start to heal.

    So, those would be my top two areas!

    Sue

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  4. Sue JacksonApril 9, 2011 at 1:02 PM

    Just noticed you also have a quote about hope at the top of your blog - I posted one today, too!

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  5. upnorthApril 9, 2011 at 1:50 PM

    Too funny Sue, it seems we think similarily. I agree with you about the immune stuff too. It's hard for me to know whether the flu symptoms or PEM is the most disabling. I think the immune is key for me anyways (and perhaps as a result of an infection of some kind)

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  6. AnonymousApril 11, 2011 at 3:49 AM

    I have not been able to engage with the NIH meeting at all and think I am going to have to skip it as I cannot spare the time and energy at the moment. So it is good to read some responses to it. (Sue I will read yours too!).

    I cannot chose in your poll - I think as you say, i want to be generally better in all areas. I suspect that if I chose Neurological (which for me includes POTS and part of IBS - I am cheating!) that there would still be a lot of other stuff going on. It is hard to know while they all coexist... I have no idea how much the immune aspect affects me. We do not get that addressed at all in the UK.

    I agree about the elephant and the oh so blind men (and maybe the odd woman!)... I hope they will change their approach soon and take a step back from their own specialisms and listen to each other more. It goes against all their training but with this illness it seems the only way we will make any headway.

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  7. upnorthApril 11, 2011 at 11:14 AM

    Ashy, don't worry about missing the NIH stuff. Really, it was just a bunch of researchers sharing their research (most of the research has already been published so for a well informed patient, nothing too new). It was exciting to actually SEE them though, and all in one place at that!

    And I realize the UK is terrible for dealing with any physical aspects of the illness, however, despite the 2x a year I see my specialist, it's the same here. There really won't be help until Dr.s are better educated (and less skeptical) and research comes up with a biomarker and better treatments.

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