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.
Discuss the article on the Forums.

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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    Perhaps a "Hall" is too nice of a tribute.

    What about if we just make it into a "Box of Shame" and put them in old boxes that we find out back in the trash?

    [​IMG]
     
  2. Valentijn

    Valentijn Senior Member

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  3. Dolphin

    Dolphin Senior Member

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    He previously said he expected to talk about the IoM report but I don't know whether he has or not.
     
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  4. Simon

    Simon

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  5. Roy S

    Roy S former DC ME/CFS lobbyist

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  6. Wally

    Wally Senior Member

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    Just posted a comment on the Washington Post article that came out yesterday. I tried to focus the comment on the funding issue and added in the video links to Forgotten Plague, Canary in a Coal Mine, Voices in the Shadows and the 1996 Primetime Live News Segment. Last but not least, I was also able to add in a link to the Open Medicine Foundation and the "End ME/CFS Project" being headed up by Ron Davis.

    See, http://www.washingtonpost.com/news/...ronic-fatigue-syndrome-report-doesnt-help-us/

    (FYI - @RyanPrior and @JenB)
     
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  7. Aurator

    Aurator Senior Member

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    I was intrigued after following a trail left in a comment on the following article.
    The comment there by a certain Bill Ameen runs:

    "I hadn’t paid much attention to IOM until this week when they suggested renaming the bullshit disorder chronic fatigue syndrome “systemic exercise intolerance disorder”. My staff and I used to call this GAFL Syndrome (meaning “Get a F***ing Life”). Thus CFS now has gravitas and beleaguered FPs (talk about fatigue!), psychiatrists, and neurologists are expected to take these middle-aged women seriously. When the only known treatment is antidepressants and getting off the sofa, well, duh…."

    His talk about "my staff and I" makes me wonder whether he is perhaps the same Bill Ameen who is listed (at the head and foot of the page) as the site sponsor of Xooma, a company that is responsible for the production of:

    "a powerful line of cutting-edge health and wellness products"

    including Kardiaxyme, apparently an algae-based product, which, among various other supposed benefits:

    "can provide significant relief from the symptoms of inflammation and pain. The ingredients in this formula have demonstrated significant analgesic effects in inhibiting the expression of the COX enzymes typically found in arthritis, as well as neuropathic and Fibromyalgia/Chronic Fatigue Syndrome pain".

    If it is the same Bill Ameen, it's difficult not to feel my already negligible confidence in the efficacy of Kardiaxyme being further undermined when the product's website sponsor is apparently telling us, in an unguarded moment, that Chronic Fatigue Syndrome is a "bullshit disorder", aka "Get a F***ing Life Syndrome".

    Do any of the unfortunate PWME who may happen to be using Kardiaxyme know what the product's site sponsor really thinks of their disorder, I wonder, and do Mr Ameen's remarks not also make it rather tempting to conclude that Kardiaxyme is itself perhaps a "bullshit" product, in spite of the claim that it is "supported by over 35 million dollars in extensive research and studies"?
     
  8. worldbackwards

    worldbackwards A unique snowflake

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    I wonder if that's on the box? ;)
     
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  9. Never Give Up

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

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    I just read the other comments there, lovely.

    I used to work with and socialize with physicians. Until PR postings left links to online physician comments I never heard any of this kind of talk before, ever. Pulling and reading my son's medical records did reveal a more polite version of this kind of attitude. Why are these people in medicine?
     
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  10. Aurator

    Aurator Senior Member

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    No, this is (some of) what's on the box. I'll guarantee their product is as good as their spelling.
    [​IMG]
     
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  11. oceiv

    oceiv Senior Member

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  12. Valentijn

    Valentijn Senior Member

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    A decent article, but it links to some watered-down GET bullshit on the same site :meh: Exercises to help reduce pain? FFS.
     
  13. allyann

    allyann Senior Member

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    The comments are really bad, physicians complaint about having 'chronic fatigue' because they work too hard. They really don't get it:

    Chronic fatigue is a real disease, not just for our patients, but is a disease that is starting to consume many medical professionals. Being a young clinician, I am amazed by the level of fatigue I have every single day. I come home and crash into an addrenal attack. My body gets cold, I feel as though I cannot physically move and therefore cannot build up the strength to get up to make myself dinner until at least 2 hours after recovering ( by 9pm on average). Medical professionals are being overworked and our longevity in our careers is getting shorter and shorter every day. Because of my chronic fatigue yet "necessity to hit my numbers" I am stuck in a viscous cycle. On top of this, we are left with piles of paperwork to take home with us just to keep up. Something needs to change and we deserve to have a work life balance. When that is taken from us, not only does it effect the quality of care, it also has a huge impact on our passion for our field. I love what I do, but I worry I won't even make it to 10 years before my body and my mind become so exhausted that I literally can no longer function. The scariest part? How will I ever pay off these graduate school loans if I can't work? I believe the APTA needs to take action and make some changes to the rules. It's time we get compensated for the overtime of paperwork we are required to do. If insurance companies are going to continue to make it harder and harder to justify need for care, we have to spend even more time on paperwork to prove treatment is warranted. Working through my unpaid lunch, coming in early, staying late, and not getting anything in return for my hard work has truly put a sour taste in my mouth. I just want to be able to do my job and receive the financial compensation I derserve for overtime.
    Posted by Chronic fatigue of a young clinician on 2/13/2015 6:49 PM
     
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  14. lnester7

    lnester7 Seven

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    WOW.

    As a comunity we need to explain that we are unable to produce energy on demand for basic tasks. That is better than to say we have "fatigue" so doctors understand better.

    I never use I am tired or fatigued at doctor. And I have not have a problem being treated so far (compared to others, there is always the dunky in the farm).
     
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  15. Scarecrow

    Scarecrow Revolting Peasant

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    The doctor you quoted may not understand the severity of ME/CFS. Nevertheless, this part concerns me. I would have described something very like this during the early years of my illness. It's potentially the start of a very slippery slope.
     
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  16. lansbergen

    lansbergen Senior Member

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    Yes and the problem is there is no test to know who is at risk.
     
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  17. Dolphin

    Dolphin Senior Member

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    All the more reason I would say to try to get rid of the name "chronic fatigue syndrome".
     
    Last edited: Feb 27, 2015
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  18. halcyon

    halcyon Senior Member

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    I guess he missed the part of the criteria that reads "..is not the result of ongoing excessive exertion".
     
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  19. Never Give Up

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

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    That made me laugh, thank you!

    I tried to post a much wordier response in their comments section, but it wouldn't post.
     
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  20. Denise

    Denise Senior Member

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