May is Myalgic Encephalomyelitis awareness month. Also known as Chronic Fatigue Syndrome, this disease is characterized by exhaustion after exertion. The exertion can be physical -taking a shower; emotional – worrying or obsessing; or mental- filling out forms.
The best source of information about ME/cfs, as we call it, is the Bateman Horne Center. They offer resources for patients, caregivers, and the medical field.
Unfortunately, not much has changed since my diagnosis in 2014. Medical professionals continue, for the most part, to know little about this disease. It’s frustrating from the part of a sufferer, and discourages me from seeking help.
I’m sure I’m not alone.
Must be very tough to live with VJ! I didn’t know a lot about this disease. Now I do! X
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It can be frustrating, but I know I am not alone.
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Thanks for sharing VJ.
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There’s so much doctors don’t know, and most won’t take the time to try to figure it out. Or even admit they don’t know. “Stress” seems to be the fallback diagnosis. I’m sorry VJ. (K)
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Thanks K. We don’t realize how little they know until we’re faced with it.
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It is, VJ. Having at least a medical name for a malady is half the battle won.
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VJ, I am sorry that you continue to suffer without much headway in treatment. I don’t think anyone knows about it here.
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Sad to think there are so many living undiagnosed.
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Thank you for sharing this—it really hit home for me. I had ME/CFS for years, and that kind of exhaustion from even the smallest things is so hard to explain to people who haven’t lived it.
I’m so sorry it’s still this difficult to find knowledgeable care. I remember how discouraging that felt, and why it made reaching out for help so hard. You’re really not alone in that.
I’m in remission now, which I’m deeply grateful for, but I haven’t forgotten what it was like. I really appreciate you speaking up and raising awareness—it matters more than people realize. 🩷
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How wonderful that you are remission. Thanks for your supportive thoughts
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Thank you for sharing this, VJ. I’m certain you’re not alone in wishing and waiting for a solution. I wonder if it’s even diagnosed in India.
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I don’t know. Every country is a little different. There are few specialists in the world.
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Sadly, I suspect that you’re not alone in feeling frustrated and discouraged.
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I’m sure I’m not. Thanks Liz
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You’re welcome, VJ.
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Thank you for sharing this post, VJ. I had only vaguely heard of the condition before.
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Thanks Neal. It really is not well known although many with Long Covid are now being diagnosed with it.
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Thanks for sharing this, VJ. I can see how frustrating this disease is – with too much unknown. And how you resist its limitations with your good works and your Art. Bravo!! And hugs…
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Thank you
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