ME is "myalgic encephalomylitis." It is the term used to describe CFS is the UK, Australia--basically almost every country but the USA. I feel like it actually sounds like a thing. CFS sort of makes people think you're "just tired." ME Action is a great group that has organized some protests to try to get more funding for research. There is also the new term SEID (Systemic Exertion Intolerance Disease), which is the new term put out by the government. I don't care for that name much. The only thing I like about it is that it classifies it as a disease, which I think, gives it more perceived validity. So, that's my two cents worth. Y'all can weigh in on your favorite name for this illness.

I'm Australian and the two terms are pretty much used interchangeably here, though CFS has become more commonly used over the years. I've always used CFS myself because the official definition of ME doesn't really fit the condition as I experience it. I like the idea of the new name (SEID) but just can't seem to bring myself to adopt it. Somehow it seems like an exercise in political correctness more than a genuine effort to bring better understanding of our condition.

Well actually a syndrome by definition is a "set of symptoms that occur consistently together". Like a fever is a symptom of the flu or other infection, CFS is symptoms associated with factors to be determined.

encephalomylitis is swelling of the brain.

myalgic I think comes from the idea that the mytochondria in our cells are hindered or affected.

myalgic encephalomylitis together is the complex disorder. Technically ME is the diagnosis and CFS is the symptoms. However they are connotatively used synonymously in most circles. and example might be Flu/fever , or Crones disease / IBS , ME/CFS...

You are safe to use either interchangeably however it is possible to get CFS not from ME, but from something else not yet discovered.

Thank you all for your explanation of ME. That helps me understand a bit better! Not to change the subject, but sometimes I wonder if I'm going into fibromyalgia instead of just CFS. I am having pain now that I never used to have. It feels like someone's wringing out my bones/joints like you'd twist water out of a washrag.

I have fibromyalgia and ME/CFS. I am not the only one here with both things. It is very common for both of them to come together. So, it's not an either/or, but more of a both/and situation. I'm sorry to hear about your pain. I have had some help with Cymbalta. Regular OTC pain killers are anti-inflammatory. That's good for arthritis, but fibro pain tends to be more about nerves. So, those OTC pain killers won't do anything for it. I also use a lot of hot baths and topicals like icy/hot. It's frustrating. The pain can be so intense. Much love to you.

Thank you, triunfadora, for the reply. I thought once you had CFS only, that was the set pattern forever. Since an OTC pain killer took the pain away, it must have been something other than fibromyalgia.

I also have Fibro and CFS/ME. This is my 20th year of becoming suddenly ill at age 42 after a bout of mono.

there are groups in Europe who are fighting the blending of ME and CFS because they say "true" ME literally means having brain inflammation... they can be quite militant about it. I think it's entirely possible we all (ME/CFS sufferers) have some swelling that is concurrent with bad symptoms - but testing here is lacking. There are some tests that can be done but the locations are few and far between and most insurance won't pay for them. I believe they are called SPECT scans and as far as I know they are only available at Stanford.

Skinny, you sound like me. I became suddenly I'll with mono at age 36. CFS followed. The mono symptoms have disappeared after 20 years. My immune system has gone on to other things. I've been suffering for almost 30 years but didn't develop fibro until almost 10 years ago. I'm convinced that CFS is an immune thing because once I had it, I went from one diagnosis to another and have had infections I couldn't throw off and asthma that came and went, etc, etc, etc..
And of course, the thing that makes it the most intolerable, especially for social interaction, is the awful exertion intolerance. That certainly is accurate, too.