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Gabby Klein New Blog Site and Blog: "HHS Refuses to Correct their Wrongful Branding"

Discussion in 'Action Alerts and Advocacy' started by Nielk, Aug 5, 2016.

  1. Nielk

    Nielk

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    Launching new blog site and blog post: "HHS Refuses to Correct their Wrongful Branding" (Klein/Holderman collaboration)

    Excerpt:


    Read entire blog here - https://relatingtome.net/2016/08/05/hhs-refuses-to-correct-their-wrongful-branding/
     
  2. duncan

    duncan Senior Member

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    A tip of my hat to Gabby Klein and this Blog.

    It, in part, offers a compelling, brief history of some of the manipulation that has underscored the US government's handling of ME. It highlights key ramifications we contend with today.

    It is a grim reminder why we need to remain vigilant to what's going on behind the facades, and despite appearances.
     
    Mary, Invisible Woman and Nielk like this.
  3. Nielk

    Nielk

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    I think that all of us are aware of the situation that we are in - especially those who have been sick for years. What we need to realize is why? Why is it that HIV/AIDS - an epidemic that started around the same time here in the U.S. as ME, is on its way to eradication (after NIH spend about $50 billion on it) and ME patients are still without treatments or even recognition of the severity of the disease?

    It is not serendipity that we are in this mess. It is because of the continued actions (or inactions) of the government health agencies. We need to raise awareness of this malfeasance and to force change.
     
    duncan, Mary and Invisible Woman like this.
  4. alex3619

    alex3619 Senior Member

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    HIV/AIDS was heading down the same path as we have gone down. What happened instead is a combination of it scaring the heck out of those in power, and the health of the sick was not compromised much for some time, allowing for aggressive advocacy. Neither of those things happened with us.

    They had GRID. We have psychobabble and CBT/GET.
     
    Invisible Woman likes this.
  5. Nielk

    Nielk

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    Why do we have psychobable?

    Dr. Unger from the CDC authored papers trying to show this - like the one about childhood trauma causing CFS.
     
    Jennifer J likes this.
  6. lnester7

    lnester7 Seven

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    Because if a disease is psychological there is a top of benefits of 2 years. So they will try to Bullcrap you, as long as possible as a psy disease.
     
  7. alex3619

    alex3619 Senior Member

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    McEvedy and Beard (1970), and Simon Wessely, primarily. ME has been a tainted term, just like CFS, but since 1970. Not one patient was seen in the McEvedy and Beard study. Not one. The CDC/NIH jumped on board in the mid 80s. The term CFS, if I recall correctly, was being discussed a couple of years before it became official in 1988. Right now, around the world, I see the term ME being considered as psych more often than not, and much of that seems to originate from the UK and NIH.

    Changing the name is not, by itself, enough. Insisting on modern research definitions is really important though, and these are ME definitions. There are so many pitfalls in names and definitions, and without a diagnostic biomarker I don't think we will fix this. That does not mean the term CFS shouldn't be challenged. Silence is often viewed as consent.

    We have to change medical, bureaucratic and scientific culture, not just the name. We need biomarkers, not just a better definition such as ICC.

    The name may well change very soon if a biomarker is found. While I think MS did not change its name, the availability of diagmostic and evaluative tests that were widely used did change doctor's opinion for the most part. We have had tests since 1940, but they go to pathophysiology, not diagnosis. Doctor's seem to want to ignore the long history of non-diagnostic biomarkers.

    Even a CURE did not change things for H. pylori induced gastric ulcers for maybe a decade. BIg pharma is on record as suppressing information going to doctors, as I discussed in my blog on this. Expect a continuing advocacy fight even after a diagnostic test.
     
    Sean, mango, Jennifer J and 2 others like this.
  8. Nielk

    Nielk

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    I agree. We have to identify the distinct acquired neuroimmune disease. The name ME has to correlate with ME criteria created by our experts - the CCC and ICC.
     
    shannah likes this.

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