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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IOM report release date 10 Feb 2015

Discussion in 'Upcoming ME/CFS Events' started by Denise, Jan 9, 2015.

  1. Denise

    Denise Senior Member

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    Oops!
    I think you clicked on the Register (to attend) button.
    Registration for the webcast is not required.
     
    Anne, beaker, lnester7 and 1 other person like this.
  2. Kati

    Kati Patient in training

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    Regarding name of the illness, remember that Dr Klimas, Bateman, Chu, Rowe, and Ron Davis were on the committee and would not let ridiculous names fly.
     
  3. Denise

    Denise Senior Member

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    And I don't think Betsy Keller would approve of a ridiculous name.
     
  4. Nielk

    Nielk

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    Rich Carson just tweeted:

    Coming from the top: "the name 'chronic fatigue syndrome' is about to change, and it's not going to be myalgic encephalomyelitis"
     
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  5. Valentijn

    Valentijn Senior Member

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    Yeah, that's my one slim hope that this won't be a complete debacle.
     
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  6. NK17

    NK17 Senior Member

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    This is exactly what I've been thinking and hanging on to since the committee members were announced @Kati.
    I can't think of somebody such as Prof. Ron Davis, just to pick the one I had the great pleasure to meet and talk to, whose son has one of the most severe ME cases, bow down to bureaucrats and non experts.
    Also Dr. Chu is a fellow sufferer and she will stand up and fight for our rights, like only somebody who's walking in our shoes can and does.
    My hope is that the new name will reflect the gravity of the illness, which Cfs most certainly has never done.
     
    taniaaust1, August59, Sing and 5 others like this.
  7. Wally

    Wally Senior Member

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    Any thoughts on who sits on the throne at the "Top" to bless such a change, as well as who controls what is presented to the "Top" for said blessing?
     
  8. Ember

    Ember Senior Member

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    With ICD-10-CM going into effect in October, what would the effect of a name change be?

    If You Mean M.E., Just Say M.E.!
    Posted by Mary Kindel on January 05, 2015
     
  9. Wally

    Wally Senior Member

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    I was wondering the same thing.

    Does anyone know where Gulf War Syndrome was coded and did this change when it received a new name?
     
    lnester7 likes this.
  10. Wally

    Wally Senior Member

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    No one willing to throw a few names into the stew pot? :meh: :zippit:

    I think those in the ME/CFS Community who have dared to stir the pot may have a better idea than most as to who the ultimate puppeteer(s) of this show might be. :devil: :alien:

    Two ME (CFS) authors have dared to express their opinions on this subject, perhaps we should watch carefully as the events unfold over the next couple of weeks to make sure the court jesters do not try to dazzle our focus away while our pockets are being picked. :cautious: :sleep:
     
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  11. Scarecrow

    Scarecrow Revolting Peasant

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    Scotland
    I kid you not. There were twins in my brother's class at school called Alistair and Peter, surname Ness. Roll call. Snigger.

    Now, grow up!
     
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  12. Denise

    Denise Senior Member

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    Kati likes this.
  13. Ember

    Ember Senior Member

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    The two situations aren't the same. According to Wikipedia:
    If the IOM rejects the ICC for ME, will their criteria be supported by better evidence?
     
  14. Ecoclimber

    Ecoclimber Senior Member

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    Last edited: Feb 6, 2015
  15. Ember

    Ember Senior Member

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    What do you expect for a million dollars? :cool:
     
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  16. Valentijn

    Valentijn Senior Member

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    No, but there are emoticons for that :meh:
     
    Sing likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Id hate it if they gave it a serious name such as "Ramsey's Disease" but then stuck a stupid CFS definition onto that name (to further muddy the waters).
     
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  18. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    or "exhaustion disease" That would annoy me as much as the CFS name. I dont want to see a name which focuses just on a symptom as this illness is systematic. (oh is systematic a word?)

    I'll accept something like Multi-systematic Disease .. MSD

    Im quite concerned over what they could of changed the name too if this is about to occur as thou I do have ME, my doctors call it CFS.
    ...

    They best have also called it something we can at least remember and pronouce if they arent going to accept ME. I can image a doctor going "what illness you have?" and a ME/CFS person saying "I dont know as I cant say it". It would be a sneaky way to try to make an illness vanish, if no one could talk about it.
     
  19. Nielk

    Nielk

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    From IOM website for Tuesday's event:

     
    Anne likes this.
  20. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    How ironic a tweet over the IOM 2015, reports CFS is not going to be an 'ME' as if this was ever an option?
    CFS never was ME to begin with so nothing has changed! Yes, we'll all be glad to see the back end of CFS, but I imagine the other end of the pantomime horse will be equally ugly, despite it's re-branding. NB: As long as brain and body inflammation remains the focus, then ME will never die, as much as many want it to. You can disappear a name, but no the patients. Not all of them.

    From what I can see there is a complex set of tactics at play with IOM redefining CFS just in time before the pathogen(s) are published in 2015 and onwards in people who are alleged to fear exercising by belief in a persistent physical cause when seriously ill (common sense reasoning not faulty illness beliefs). Those in control know the 'CFS' patients contain specific embarrassing pathogens. These were hidden within CFS historically. They appear to be often tissue bound and require new technologies to detect.

    Since the 'XMRV' story we have seen a lot of disinfo flood the British press. It is well known that Psy-ops tactics are used in the media as a tool for propaganda (The common tactic in use is to stress a victim you need to evoke a behavioral change in, to make them more compliant. The preferred option is humiliation and de-humanization through persistent psychological stress.

    As luck would have it,
    psychiatrists know how to do this best, they are experts in the human mind. The British media are experts at this, with atrocious lies written about 'ME recoveries' using the most absurd claims, all non evidence based. (The Americans tend to stay well out as there is no socialized health care system to utilize the disinfo outcome at a clinical level. Americans can also have the option of private health care away from the BPS model of psychiatry).

    If we look at what comes before and after P2P IOM things get interesting.

    CFS patients can be re-housed within the newly offered label after a media blitz humiliating them with claims they fear exercise and are generally not authentically sick. Do not research their infection by blocking funding (as done for decades by refusal for grants). The ME CFS patients will be so broken, they will accept anything better than the constant hatred they experience in the press and lack of medical care in the community.

    Deletion of CFS historically, and all future research of the CFS phenomena ends tomorrow. (IOM re-branding Gulf War Syndrome is an example). Exposure to allied BW (air born) given to Saddam by military is de-associated to symptoms in infected ex soldiers. Symptoms become unspecific, causation: no single cause, no liability from armed forces employers who sent soldiers to the battle ground, who ironically in battle were with pathogens they created originally. Did they infect others when returning home?

    The specific pathogen infected ex-CFS patients will flock to the new name, unaware by doing so, sees the demise of 'CFS' legally and thus they can now no longer easily sue for damages because CFS was thus never associated to Pathogen 'X' in time (what the IOM P2P can be used for and curiously only appears after Mikovits stirred the hornets nest and put CFS on the global map). Perfect timing then for a re-branded label that banishes the actual ME CFS experts before hand to create the re-definition to steer away from ME pathology. Easy.

    The ex CFS cohorts with a shiny new name remain clueless and unaware they are infectious to other people, namely family members. Numbers continue to rise. Numbers become so common, the newly branded CFS is just accepted as part of life, as Autism and Asperger's now is. 'Mystery ME' over decades now becomes common. Common is less scary. Common sounds reasonably harmless. Inflammation of brain/spinal cord will 100% not be associated in the new name for CFS. Of course, that's the whole point!

    ME could become a fringe movement of alleged conspiracy theorists who 'believe' they have 'something else' other than the newly branded CFS (that 80% of ex CFS patients now welcome). Will ME's be said to be in denial and won't accept it ME doesn't exist? You bet. These patients will be easily further disenfranchised from others, exactly what is needed to control the knowledge that a 'tiny percentage' of ME patients have a newly discovered infection.

    Thus, no large studies may be publicly funded for the 'ME' to achieve the pathogen becoming detected in the 'majority' of ME, thus it can never be the cause if this occurs, as ME doesn't exist any more. No single cause. As the MRC National Archives discuss, as Reeves et al, talk about is the 'preferable outcome' for CFS. No conspiracy theory, just awkward fact.

    Now that is the plan, except one glaring problem. Good quality independent repeatable science studies away from HHS/CDC/NIH, can end all that, and that is why there is always hope. :balloons: . If we can get multiple groups, from multiple countries (ideally) all finding the same thing, well we have some genuine opportunities for a better future.

    Hopefully we will move from 'fear of exercise' to fear of physicians getting sued for suggesting CBT and GE is evidence based to clients with ME, when ME is shown to harbor transmissible agents - as it appears to be it will be in at least some.
     
    Isamu likes this.

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