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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
Just Want to Talk | Last Active: Oct 15, 2023 | Replies (92)Comment receiving replies
@hw43 Hi! Reading your message is like reading my own story. They diagnosed me with MS ++ different other things. Until I found a doctor who was a kind human being, an intelligent person, and a professional who had been going his own path (looking into the issue of alternative medicine, and the importance of music in palliative medicine). Well, to make a very long story short, he had all the time said that my symptoms were the same as those associated with ME/CFS. So, when I took a blood test (required by an endocrinologist), we found out that I had a very, very high level of a virus called Epstein Barr (I had never heard about it up to that moment!).
All I feel I can tell you is never, never, never doubt yourself. We might not have a Doctor's degree, but when it comes to our own body, we have Doctor's degrees multiplied by 10 because nobody, nobody - knows our bodies as well as we do.
I am happy for you that you are volunteering and that you not only are enjoying it but that you are physically able to do it. 😊
Happy New Year!!!
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Good to hear your story Christiana. My feelings exactly. While I have followed the research on ME/CFS, I recognize that there is no test to determine thit diagnosis. It is diagnosed based on symptoms and by eliminating other auto-immune diseases. While I appreciate the difficulties faced by the clinicians, I have to say that the criteria are only symptoms, so I don't feel that they are distinctive enough and reliable enough to reach a definite diagnosis. Having been on this journey since 2011, I simply follow what my body, brain and intuition tells me. This visit to a new recommended rheumatologist will be interesting, but I don't have high expectations. So, I immerse myself in what I'm interested in. Aside from volunteering, high on my list is classical music, reading and interacting with friends in person and on Zoom. The Epstein Barr mystery is a mystery. If I have high antibodies fighting EVB, why are my symptoms not similar to the symptoms I had when I suffered from infectious mononucleosis? the only thing they have in common is fatigue, but fatigue can also result from many other illnesses. I'm skeptical but not bitter. So, I go on with my life grateful for what I am able to do at any particular time and accepting the fluctuations I experience which define what I am able to do on a particular day or for that matter a particular hour. I hope Christiana that 2023 will treat you well and you can enjoy life despite the limitations imposed on you by your illness 🙏🏻