The Call for Opposition: Challenging the P2P and IOM Processes
In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes...
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new empowher article: "Why Do I Call it Chronic Fatigue Syndrome?"

Discussion in 'Lifestyle Management' started by Jody, Aug 9, 2011.

  1. Jody

    Jody Senior Member

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  2. dannybex

    dannybex Senior Member

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    Hi Jody,

    It's my understanding that it's not necessary to have an 'abnormal' MRI in order to fit the current definition of M.E.

    From: http://www.hfme.org/testingforme.htm

    "Research has shown that at least 80% of M.E. patients will have abnormal MRI scans (Hyde, 2003) (Carruthers et al. 2003)."

    "Dr Byron Hyde also explains that a normal MRI does not conclusively prove that a person has no CNS dysfunction as the MRI demonstrates only abnormal anatomy and so a normal MRI should never be used to prove that a person does not have CNS dysfunction or is not ill (2003, [Online]."

    So you may just have to do an edit on your piece! :)

    d.
     
  3. Jody

    Jody Senior Member

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    Dan,

    Are you saying my "routine head" might not be so routine after all? :)
     
  4. dannybex

    dannybex Senior Member

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    LOL !!! :)
     
  5. zoe.a.m.

    zoe.a.m. Senior Member

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    I like this article very much Jody and concur with Dan about the ME/MRI debate. I just met with a new doctor, shopping around for people who accept Medicare, and right away told her "CFS" (but with the usual caveat), "known almost everywhere else in the world as ME, where apparently Latin and Greek roots aren't assumed to terrify the masses..." followed by a little more of the "if I have to call this 'chronic fatigue' I fully expect all other serious illnesses to be (how would you say it--almost medically-phonetically??) described by just one of their symptoms, in no particular order of importance."

    She said she'd "have to think about that." I don't think she was impressed... oh well. It's just become my low-energy-level-requiring method of civil disobedience. I'd like to see articles (everywhere) addressing the discrepancy between available/approved treatments covered by disability and Medicare and how Medicare and disability neither really allow for the lab findings of many of the things you describe in your article, nor their treatment. Sorry to jump to another step, I just can't read about one without thinking about the other! But it's no small thing to get the ball rolling :)
     
  6. taniaaust1

    taniaaust1

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    Jodie. I think you are doing the right thing by not calling your illness ME till you can find something to back up its probably that.

    I think too things like MRIs can be read differently by different people.. eg in tests things like age may not be taken into account, small abnormalities can be often ignored (thou a ME specialist may pay more attention to them).

    I was told my MRI was normal by the MRI report* but I do have some of the ME abnormalities show up on tests eg Postive Rombergs and also my EEGs all show up "non specific abnormalities" which I wasnt told about so didnt know I had any abnormalities showing up on my tests until I requested copy of tests. (I was told my tests were normal due to the abnormalities being "non specific" eg they didnt know what illness the abormalities related to).
    The certain abnormality on have showing on it is a common ME finding but of cause the ones doing the test reports didnt know what ME abnormalities are.

    So I suggest to try a few other of the ME kinds of tests as you probably will find you do have some of the abnormalities showing up on some of the other tests. (If not, yes do doubt ME and keep searching for what you could have). If you fit like a ME symptom picture, dont rule it probably out just by those tests you have, do some more ME backing tests first.

    If you dont have a neurologist, a Rombergs test can be done a home with a friend to make sure you dont injure yourself doing it.
     
  7. Jody

    Jody Senior Member

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    Zoe.a.m.

    Sorry to hear you've been gettin gsuch a bad reaction from the new doctor. Astonishing how often it goes that way.

    I'm glad you liked the article.
     
  8. Jody

    Jody Senior Member

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    Taniaaust,

    I'm intrigued by the idea of a test where I might need someone to keep me from getting injured. Wow. :)
     

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