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Articles on the release of the IOM report

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Feb 10, 2015.

  1. Wally

    Wally Senior Member

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    Thank you. Only one of my comments made it through the New York Times spam filter (and it had a typo :oops:).

    I have tweaked some of my comments (that were posted above at Post #58) in order to correct some of my pesky typos and to add a few more reference ideas for information that might be helpful to include in a comment (either for current or future articles). Feel free to use any of these comments in whole or part.

    The second comment is quite long because of all the references. You may need to pick and choose what you are able to fit into a comment box. Alternatively, you can split up the comment and try to submit multiple comments (this is why tag teaming comments with a buddy or two can be quite effective). :hug:

    Also, some sites might not publish the comment(s) if they think you are a "spammer". By submitting more than one comment or if you add links to a comment, their software might label you as a possible spammer. If this happens your comment could sit for awhile in moderation and either eventually get posted or just never show up. Each site is different, so what will make it through moderation and what will disappear into their trash bin is a bit of a guessing game.

    I wonder if patients (and our supporters) will be considered "spammers", if we try to sell the truth about this illness through the comment sections of online papers/journals or if this could be a great advocacy tool for a group of patient warriors? :ninja:

    Here are the three comments that I have drafted. Perhaps others will add a few of their own suggestions?

    (1)
    (Note – References could be added to this comment to identify top physicians and scientists who are working to try to solve this illness, but they need help from both private donors and the government to fund these projects. Here are some examples of research projects/institutes that people might want to reference - Open Medicine Foundation (http://www.openmedicinefoundation.org/), Stanford (http://med.stanford.edu/chronicfatiguesyndrome/about/projects.html), Columbia (http://cii.columbia.edu/research.aspx?8Fo92f) and, Simmaron (http://simmaronresearch.com/research/).

    (Note - I have rec'd a comment from a Forum member (whose opinion I respect) that the word "exponentially" may not be very effective (regardless if it can be supported with facts) because it may not seem believable to the target audience. So, you may want to consider removing or modifying this word if you decide to use this comment.)


    (2)

    (3)
    (Note - The references to books written about the illness may not be something you want to include in a comment. These books may also be controversial to some in the ME/CFS Community, but I believe they both provide an interesting historical perspective (at least through the eyes of each author) to this illness. There may be other books that have been written, which might also be worth mentioning, but these are the two that I have read that set the stage for what was happening with this illness during different points in time.)

    *Edit - If you watch the videos that I have selected, I think you might understand how these short videos can express some of the information that we want people to hear in a much more effective way than only relying on written words.
     
    Last edited: Feb 15, 2015
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  2. beaverfury

    beaverfury beaverfury

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    West Australia
    SOC and Wildcat like this.
  3. beaker

    beaker ME/cfs 1986

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    This link is empty. I searched the site and couldn't find it. Hopefully they took it down.
     
    Roy S likes this.
  4. Roy S

    Roy S former DC ME/CFS lobbyist

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  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Anyone care to head over to Medscape and rebut some of the recent damaging physician posts?
     
  6. Cheshire

    Cheshire Senior Member

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    Not damaging, and quite interesting

     
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  7. eafw

    eafw Senior Member

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    This is actually a very badly written article, and was published in Nature too (low standard of writing and reporting - where do they get these useless journos from, ?)

    What they are probably trying to convey is that depressive disorder used to exclude people from a ME/CFS diagnosis and now it doesn't, no more than depression would exclude a diagnosis of cancer or rheumatoid arthritis for instance. One of the comments on the Nature article picks up on this as well. Badly communicated in the original piece though.
     
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  8. Valentijn

    Valentijn Senior Member

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    "Psychoillogical" is my new favorite word :love:
     
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  9. worldbackwards

    worldbackwards A unique snowflake

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    I'm not sure if that's quite the metaphor, but he's good!
     
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  10. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Yes, this one is wonderful! And one of the 2 that I was referring to, the one by "Bill Wilke MD-Retired Rheumatologist, Cleveland Clinic Foundation and author of The Cleveland Clinic Guide to Fibromyalgia." was nicely rebutted overnight. This one:

    "Dr. anthony gear| Rheumatology14 hours ago


    The symptoms are real and disabling but it is no more than the extreme end of a normal spectrum. Medicalising and giving it odd names eg ME, is counterproductive. 80% percent of successful management is to get those with the sympoms to recognise it as part of a normal spectrum and not a disabling disease!"

    Could still use an intelligent response, one that will educate the comments readers.
     
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    Last edited: Feb 21, 2015
  12. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    This is the poll:

    Do you believe ME/CFS, now known as SEID, is a legitimate disease?
    No. Since it can't be diagnosed by medical testing I think people say they have it to get time off work.
    Yes. Even though it can't be diagnosed by medical testing I believe the disease is real and the symptoms are debilitating.
    I believe the disease is legitimate but I also believe there are folks who say they have it when they don't, and get away with it because it can't be diagnosed by medical testing.
     
    SpecialK82 likes this.
  13. SpecialK82

    SpecialK82 Ohio, USA

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    Just voted - the Yes vote is clearly winning :thumbsup:

    It's easy to vote, no sign-in necessary
     
  14. Valentijn

    Valentijn Senior Member

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    I've submitted a comment to the newsite, pointing out that their poll is presenting inaccurate presumptions in the response options. Obviously ME/SEID and/or objective disability can be diagnosed by medical testing, via the 2-day CPET or TTT.
     
  15. Aurator

    Aurator Senior Member

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    This article starts off promisingly, but is seriously undermined by the concluding comments from a Dr Sharistha Peerzade. I'm clinging to the hope that her words are misquoted:

    "[Hackshaw] emphasized the importance of first ruling out other conditions when symptoms might point to chronic fatigue syndrome, as did Dr. Peerzade, who sees many chronic fatigue patients in her primary-care practice at Mount Carmel Medical Group’s Pickerington office. Peerzade said patients often develop the symptoms after a viral infection.
    ''“Cognitive therapy can help. I’ve seen exercise help them a lot,” she said. “I’m hoping that doctors, especially, will take this a little more seriously.”''


    She "hopes that doctors, especially, will take this a little more seriously". Hardly warring words, and it would be nice if she could lead by example and read up on ME/CFS before she takes responsibility for patients suffering from the disease. Or when it says she "sees many patients in her primary care practice", maybe we're to understand she does just that and no more, stepping over their outstretched bodies in the corridor, on her way to treat patients who have diseases she takes not a little but a lot more seriously.
     
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  16. Sushi

    Sushi Senior Member Albuquerque

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  17. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    OK, so, that was so bad it was funny!
     
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  18. Wally

    Wally Senior Member

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    I am really thinking there should be a "Hall of Shame" for some of these reports and outrageous comments made in response to articles about this illness. As a historical reference, they could be golden to set the stage for what patients in the good old days were faced with while dealing with a "serious biological driven illness"
     
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  19. Aurator

    Aurator Senior Member

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    That definitely is one of the most appalling misrepresentations I've seen in recent times. Every news article of that kind is a slur on patients, practically amounting to slander, and it does untold damage to their welfare.
    I think the Hall would be so big, Wally, it would occupy a whole website in its own right.
     
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  20. Valentijn

    Valentijn Senior Member

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    They pulled down their horrible articles and video a couple days after putting them up. I think quite a few people complained, myself included. All that's left is the copy someone (a patient I think) put on Youtube.

    KOAT's problem is that their medical "expert" is an anti-CFS bigot. Hopefully they've learned he can't be trusted.
     
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