Who benefits from 'CFS' and 'ME/CFS'? please read

Discussion in 'Fibromyalgia Main Forum' started by Bluebottle, May 20, 2009.

  1. Bluebottle

    Bluebottle New Member

    This is long but a brilliant explanation of why we have no effective research, testing or treatment:

    "For whose benefit was ‘Chronic Fatigue Syndrome’ created, and for whose benefit is it so heavily promoted despite its utter lack of scientific credibility? Who benefits from the artificial ‘CFS’ construct?

    Who benefits from Myalgic Encephalomyelitis and ‘CFS’ being mixed together through unscientific concepts such as ‘CFS/ME’ and ‘ME/CFS’ and Myalgic ‘Encephalopathy’? Who benefits from the facts of M.E. remaining ignored, obscured and hidden in plain sight?........................"

    read on here:

  2. becc

    becc New Member

    Thanks for posting this, Bluebottle. I've bookmarked it and will read it properly later. I've been considering writing something along these lines for a while now - I'm glad Jodi has. It's an important topic.
  3. hatbox121

    hatbox121 New Member

    Last time I mentioned something along these lines, some folks got upset.
  4. skeptik2

    skeptik2 Member

    I think some here may have gotten upset because they do not have true M.E.,or they do, but they have been diagnosed with "CFS" which they think has a treatment, and they do not want to hear anything differently.

    As they stick around and read and learn more, they will understand. Let's give them time to learn, ok?

    Thanks, bluebottle for posting this; I wish you would retitle your post to make it tie into the CFSAC conference post; this is excellent information and ammunition for speakers to give on the 27th and 28th.

    Maybe retitle: "Ammunition" for CFSAC Meeting? :)

    Of course, anyone using info gleaned from the hummingbirds site should cite it.

    I will.

    Hugs for posting this!
  5. TeaBisqit

    TeaBisqit Member

    What has bothered me is that since I got sick, and I am a classic case ME, and I was never given a CFS diagnosis, it was always CFIDS, in all these years, I've watched the horrible push by doctors and the media to get away from the CFIDS term. Everyone just calls it CFS now, and I've hated that with a passion because that isn't what it is. CFIDS is Chronic Immune Dysfunction. It is essentially a damaged immune system of biological origin. But there has been a huge push to get away from calling it that and only use the term Chronic Fatigue Syndrome. And no one has stopped them from doing this. It upsets me to no end. By deliberately lumping us in with people who do NOT have Chronic Immune Dysfunction/ME, we will never be helped. They have deliberately and systematically tried to remove us from what we really have. And they haven't been stopped or properly challenged. Probably because we'll all too sick to do a march on Washington or get a class action law suit going and testify on it. I know I'm too sick. I have been effectively neutralized. I spend my days too sick to do much of anything. And I just wish there was a way to reverse the damage they have done by forcing this horrible CFS term on us.
  6. jasminetee

    jasminetee Member

    This is all so true Bluebottle. And unfortunately the U.S. is going in the same direction after years of stagnation and doing nothing for us. Do we really want their help after all? I'm in doubt. Their power over the lives of patients is frightening.
  7. gapsych

    gapsych New Member

    While there are some good points brought up by this article. I found the parts that buy into the "conspirach theories" troubling.

    Unfortunately this type of thinking puts a lot of issues in black or white terms, when in reality they are more complicated and deeper than that.

    The companies/institutions/people who are indeed benefiting are not benefiting because of some conspiracy theory but by default. They are reacting to the state of how we are perceived at this point in time.

    We are in the infancy of learning and research is just starting to show that our DDs are in fact a legitimate medical condition. With the state of where things stand, is it any wonder that the insurance companies do not always cover out DDs.?

    Is this fair? No as we all live with the impact of these policies.

    Focusing on the conspiracy theories is wasting time and energy. It puts us in a position of us vs. them which can become counterproductive. It makes us look less credible.

    Instead of sitting around pointing fingers, we need to focus on funding research, raising awareness about our DD and becoming advocates.

    We need to learn from all the abuses of the past. Hindsight is 20/20. We need to scrutinize, examine in detail with critical attention what happened and prevent it from happening again.

    Am I angry with the state of things with our DD now? Absolutely and then some.

    Do I think we should never vent and criticize the institutions/people/issues that this article discusses. No.

    We are dealing with a situation where the glass is half full. So the task which is not easy and might be slow in coming, is how do we make that glass fuller. Preferably to the top!!

    I know I sound harsh. I don't mean to be. I am just saying we have to be realistic about what is happening and go from there. Please take this post in that context.

    [This Message was Edited on 05/28/2009]
    [This Message was Edited on 05/28/2009]