How to confirm CFS?

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Hi guys

Can i ask for advise - how did you confirm you got CFS ? what tests were done?

I've done all the blood tests in the worlds, MRIs,gastroscopy, lumber puncture, muscle biopsy - and it all shows normal. I've got a lot of inactive HHV and EBV - but does it prove the diagnosis?

Thanks

Simon

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  • Posted

    Simon,

    Hi there! For me, it has been a 3 year process of elimination, trying to rule out other possibilities. (And I'm still not at a diagnosis yet, but hope to be by the end of the year.) I'm curious, in additon to what I have listed, what have the rest of you ruled out?

    I've explored & ruled out the following:

    Anemia (Ferritin should be above 50), VitB12, & Vit D

    Possible Psychosomatic Symptoms (Expect one of your Docs to suggest this)

    Thyroid & Adrenal Concerns

    Tropical Diseases: Schistosmoiasis, Strongyloides, Filarias (Traveled to Africa)

    ANA

    Diabetes

    Lyme Disease

    CBC testing (helps doc with Red Flags for additional testing)

    My Rhematology panel revealed I have MGUS & the bence jones protein. After further exploration by a hematologist, it is believed to be noncanerous, and not the cause of my fatigue. (But we know there is something happening in with my bone marrow that isn't right.)

    My MRI revealed I have a brain tumor, but according to my neurosurgeon, it is not the cause of my fatigue (and likely to be noncancerous.)

    2 years after spending time in Uganda, we discovered I had been infected with malaria, plasmodium vivax. I supsect my bout of malaria triggered CFS, especially since it went untreated for so long. However, more recently the BBC announced that malaria can dig its way into bone marrow and go undetected by bloodwork.

    My hematologist is already ordering a bone marrow biopsy... I'm trying to find a way (in the US) to also have my bone marrow for malaria. (Does anyone know if this type of testing is already available London?)

    For sure, it's a looooong road to receiving a conclusive diagnosis for CFS. Best of luck to you!

    *Does anyone else have other things they've ruled out that maybe the rest of us should explore?

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  • Posted

    After a few years of going to different doctors, eventually I was forceful enough to get one to refer me to an ME specialist. There were no tests; it was a verbal interview and he asked me lots of questions about my symptoms. 
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  • Posted

    No, Your inactive HHV and EBV does not prove diagnosis. I was diagnosed in the following way. I had bloodwork done which came back normal. That excluded other illnesses. I then went to a specialist who asked me a series of questions. I was then diagnosed based on the answers to these questions and the normal bloodwork. There is currently no biomarker for ME/CFS.
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  • Posted

    As another reply said, I too got my diagnosis confirmed by a specialist and it was from a long verbal interview after my GP had done all the relevant tests which all came back normal 
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  • Posted

    I had lots of tests to rule out any other cause and when they were all clear my doctor got me in to see a specialist. He did more hands on test and asked me lots of questions and the report back to my doctor said that I had post viral fatigue caused by my vertigo which I have had for the last twenty years. But I also had CFS for a long time before I had  PVFS

     

    Basically they rule out everything else before getting you in to see a specialist

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