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What to expect/do having ME/CFS?
Autoimmune Diseases | Last Active: Nov 2, 2025 | Replies (6)Comment receiving replies
@db72
Thank you for your informative post! Prior to any autoimmune diagnoses I spent many years with "CFS"/ME. (Friends in Canada called it ME even 40 years ago). So I was interested in the link to the solvecfs.org site. This illness remains an obscure entity. 10 years before I became disabled, I had mono/Epstein-Barr virus. You reminded me that they can be connected.
How strange that these viruses open us up to a multitude of illness for life, yet they aren't being taken seriously, STILL!?
I have Hashimoto's, sleep apnea and tinnitus also. And "a few other things"... Hearing from you has made me rethink about what caused all of these chronic illnesses. Some days I could use a nap just taking care of my health!
I was an RN, as I wrote here, but don't know some acryonyms used on these boards. What is PEM? I also agree about conserving energy...I have to take an hour nap every afternoon or my brain hardly functions. It's just a part of my life now.
@melissawolfe1981 and @db72 Glad we connected
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@jw9 yes! We do share so many of the same comorbid conditions and I am convinced that the Epstein Barr Virus combined with a genetic predisposition is a major player in this and so many other neurological disorders. Recent research seems to be bearing this out.
I have 2 adult daughters (I’m 74) and both of them had severe cases of mono in their late teens. One has been disabled with ME/CFS for 20 years. The other doesn’t have ME but has several autoimmune diseases and a history of epilepsy.
My axonal Polyneuropathy has advanced to where I have difficulty walking at home and need a motorized wheelchair to go out. When I first got sick with EBV it attacked my nervous system. From day one I experienced parathesias and vibrating sensations in my legs. But it was about 15-20 years later that the numbness and balance problems gradually set in. After many tests and 3 neurologists, the latest neurologist paid close attention to my medical history with EBV. He explained that my neuropathy was caused by the EBV virus that triggered the autoimmune form of neuropathy. I had suspected that for years based on personal research, but it was satisfying to hear it from someone who understands how viruses can affect our immune system. This neurologist also explained why my tinnitus was also linked to the nerve damage.
It’s something that your Canadian friends knew to call this ME early on. The UK did as well. The US has been behind on it for sure!
I’m so sorry you lost your nursing career so early in life. 😔
PEM stands for Post Exertional Malaise, and is one of the diagnostic hallmarks of ME. PEM is marked by ME symptoms that are exacerbated due to over activity- even emotional activity such as visiting. PEM sets in 12-48 hours afterwards and can last hours, days, weeks requiring additional rest to recover.