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What tests should be done on every ME/CFS patient?

Discussion in 'General Treatment' started by Alvin2, Mar 24, 2017.

  1. Alvin2

    Alvin2 Senior Member

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    I spent years trying to figure out what i had before getting the diagnosis, so i'm sure i've covered a lot of it but is there anything thats common/uncommon or similar diseases to rule out or useful tests that every ME/CFS patient should get done to understand or tailor treatments for this condition that i should ask for?
    Also what should i be trying to see if it has any effect (if i have the means in the future), i have tried many things but have seen others mentioned across the forum.
     
    Last edited: Mar 24, 2017
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  2. *GG*

    *GG* Senior Member

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    ME/CFS is a diagnosis by EXCLUSION, so whatever your symptoms may be, your Dr should have ruled out all things that might cause them. If nothing significant shows up, then you likely me ME/CFS.

    GG
     
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  3. Alvin2

    Alvin2 Senior Member

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    I already know i have it ( :cry: ), but i see posts mention methylation, genetic testing results, antibody tests, and so forth.
    I guess i should also append my post to what should i try (that i have not already, people have mentioned things like magnesium, B vitamins, Q10, etc)
     
    Last edited: Mar 24, 2017
  4. charles shepherd

    charles shepherd Senior Member

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    If you are in the UK the ME Association list of recommended baseline investigations is covered in our information on Early and Accurate Diagnosis of ME/CFS.

    Free MEA website download here:

    http://www.meassociation.org.uk/201...nals-that-could-improve-prognosis-9-may-2016/

    Second and third tier investigations, which will depend on the clinical assessment and the differential diagnosis, are covered in considerable detail in the Investigation section of the MEA purple book (pages 52 - 57)

    The MEA purple book is sent out with a covering explanatory letter from myself

    If you want a copy sending to your GP or hospital specialist, please send the name of the doctor and the surgery or hospital address to Gill or Helen at the MEA office

    MEA purple book: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/



    Dr Charles Shepherd
    Hon Medical Adviser,
    ME Association
     
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  5. Alvin2

    Alvin2 Senior Member

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    Interesting, thanks
    I'm located in Canada and can't afford the book unfortunately :(
     
  6. TigerLilea

    TigerLilea Senior Member

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    Alvin, for those of us in Canada, beyond the basic testing to rule out other possible conditions, we don't have access to a lot of the tests that the Americans can get done. At least that is what I am being told. :(
     
  7. charles shepherd

    charles shepherd Senior Member

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    If you contact Gill Briody at MEA Head Office (email addy on MEA website) and say that we have been discussing this on PR, and Dr CS has cleared a free copy, she will post you a free copy next week…..

    Regards

    CS
     
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  8. Dechi

    Dechi Senior Member

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    According to my specialist, Dr Hyde, you only need 2 tests to confirm ME.

    1- a spect scan to confirm hypoperfusion to the brain, as every ME patient has it and if they don't then it's not ME
    2- a gastric biopsie to confirm the presence of enterovirus or other infectious agent

    That's it. Everything else is just to make sure there isn't other underlying issues that might be treated with medication (ex : cardiac testing, table tilt test, ect).
     
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  9. Alvin2

    Alvin2 Senior Member

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    Perhaps i can't get them done but what tests are you referring to?

    Cool, i will do this, thanks :)
    Is it better if i e-mail Gill or if i pass you my details to send along?

    I've had an MRI that shows multiple white matter lesions, but if the spect and biopsy were definitive then would they not be a recognized biomarker and ME/CFS no longer a diagnosis of exclusion?
     
    Last edited: Mar 24, 2017
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  10. *GG*

    *GG* Senior Member

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    How about LDN (low dose naltrexone), not sure how easy that is to access in Canada though, not the easiest thing to get a Dr to prescribe. But you can buy it online and dilute yourself. I did that for a spell, because I ran out and it is much cheaper to take that way, even if insurance covered it.

    Gg
     
  11. Dechi

    Dechi Senior Member

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    @Alvin2 Well, they are for Dr Hyde. He has written about it too. He is sending his work to doctors and hoping to have an influence. He does conferences around the world. But he is not a young man anymore (80 y.o) and so he dedicates his 30 years experience with ME to help people. He has diagnosed thousands of ME patients and helped diagnosed an incredible number of other patients caught in the CFS umbrella.

    https://lookaside.fbsbx.com/file/Definition of ME - Dr Hyde 2016.pdf?token=AWzeqot0PQ12K2Y_UArvv1dAGEVGhnRc9a904bPprKDsw0E0jm0AudmW5E-tzOVWVsD3C3Hj4r91OFp9AGgVlBi3UQPepYzinfusFTYHIwZzDGkIAnskkmi12P9Jsom_9JIk0APVFHiF06ugYw2DesQ8

    Does this link work ?
     
    Last edited: Mar 24, 2017
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  12. lnester7

    lnester7 Seven

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    Tilt table test
    Citokine profile
    Nk cell number and activity
    Lymphocyte subset.
    Metabolites ( I never done this one so cannot recommend any)
     
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  13. PatJ

    PatJ far and free I gaze

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  14. keenly

    keenly

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    Very good question.
    I would say Mitochondrial function tests for sure.
     
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  15. Alvin2

    Alvin2 Senior Member

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    The link isn't working :(

    Why the tilt table test?

    I will read it when i can, thanks
     
  16. lnester7

    lnester7 Seven

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    In my personal opinion, when you have CFS eventually we all develop at some point of the desease some kind of disautonomia, PoTs looking to be more common but I think the moment the patient feels it cannot be upright without feeling horrible is time to test for OI.
     
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  17. Dechi

    Dechi Senior Member

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    @Alvin2 I'll have to do it from my computer. I'll try tomorrow.
     
  18. halcyon

    halcyon Senior Member

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    This one should work.
     
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  19. Shoshana

    Shoshana Northern USA

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    @missfire

    I was hoping that something on this thread might help give you ideas, of what to ask for.
     
  20. Dechi

    Dechi Senior Member

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    @halcyon Thank you !
     

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