Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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The P2P Draft Systematic Review Is Up

Discussion in 'Action Alerts and Advocacy' started by Nielk, Sep 22, 2014.

  1. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    This story is horrendous! Greyhound therapy.....hmmm, I thought that must be when they give you a dog for company. It's worse, Much Worse!

    Ecoclimber, I enjoyed reading the rest of your post too.
     
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  2. jimells

    jimells Senior Member

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    northern Maine
    President Obama: "There's a big problem with this CFS thing. Make it go away."

    Staffer: "Sure thing, Boss. We'll redefine it out of existence."
     
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  3. Nielk

    Nielk

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    melamine, beaker, Valentijn and 2 others like this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    I am so grateful to J Spotilla* who worked so hard to get these documents and share the info.

    My only problem is how to respond to what I read. I have alcohol intolerance.

    But the story isn't over yet. Maybe we'll get a surprise ending, maybe somewhere someone in the vast medical-industrial complex will find their humanity.

    * Note to self: there are days when I just shouldn't post.
    Correction: grateful- J Spotilla blog J Burmeister for Documents
     
    Last edited: Nov 7, 2014
  5. Denise

    Denise Senior Member

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    Esther12, jimells and Valentijn like this.
  6. jspotila

    jspotila Senior Member

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    You are very welcome. Jeannette and I have both been filing document requests and blogging about what we find.
     
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  7. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Fighting the P2P and IOM with calm and extensive questioning as is ongoing in the CFS ME advocacy movement is most admirable, if exhausting physically and mentally. Please keep it up!

    However, in terms of a 'victory' we, should understand that no matter how hard everyone wants justice and fair play the decision is final. ME/CFS will be re-termed as a new psychoneuroimmune syndrome. Neither psychological, neither neurological. A dove of peace will be offered through 'cutting edge research' such as studying the microbiome (massively murky complex area which will take decades to sort out) and genes associated to behavioral changes.

    The aim is to appease the patients this way. Uniformed patients.

    The future aim is to 'prove' old CFS is real, but that your genes and mind, lead to behavioural changes that in turn increase inflammation and cause pain. Thus psychiatry, was right. This can only be done, by ignoring vaccine contamination (retroviruses causing immune suppression) and the subsequent epidemic of Lyme, Lyme like disease which is the probable 'answer' behind ME CFS of chronic severe form.

    The IOM and P2P are not going to accept a single cause entity such as existing or novel pathogens that cause neurotoxicity, nerve and endothelial damage. Clearly, these pathogens lay behind ME and CFS, which is why the Americans are rapidly altering what ME and CFS means. We have seen this is achieved by removing established ME CFS experts from 'reviewing' the past and current science and replacing them with non experts (IOM did this).

    So the game is rigged, but the patients are smarter than the architects:

    We can store all our attempts at politely but firmly asking the IOM and P2P to play by the rules before they summed up in 2015 and dismantled ME/CFS for good (as will happen).

    The British are increasingly attempting to distance themselves from Encephalomyeltis despite research now proving it exists (if studies are repeated). They likely won't be repeated. All of this is happening at the same time in history. We can consider relatively easily that the denied ''Chronic Lyme'' is novel, and not associated to Classical Lyme and may even be a virus. Be you labelled with disbelieved ME/CFS or Chronic Lyme, All you need is the discovery of the immunosupressive agent to find out why co pathogens keep you sick. This is what Dr Mikovits nearly found. Someone else will now find it.

    This is why I applaud all the people, often patients, working so hard to try and get answers.

    Document everything, all responses, all emails,and make hard copies. I believe your hard work, will be worth it in seeking legal action against those who did everything in the power, to wreck a fair hearing. Evidence of this, will be submissive in court in the future.
     
    Last edited: Nov 10, 2014
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