I’ve been asked a lot about the difference between CFS and ME recently, so I thought I’d write a short post about it.
When I was diagnosed, I was diagnosed with M.E (Myalgic Encephalomyelitis) and I was incredibly sick. Over the years however, the term CFS (Chronic Fatigue Syndrome) has come to replace the term M.E- it’s easier to say for one thing!
What’s in a name?
I have to say that I’ve always referred to it as M.E., but recently, CFS has come to be an umbrella term for many different illnesses of the same variety- Post Viral Fatigue and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), to name just a few. The problem with this is that it only touches on the fatigue and none of the other associated M.E. symptoms, and this really annoys the life out of me. It is from this that the term CFS then comes to symbolise someone who is just a little bit exhausted, rather than severely disabled due to fatigue. (Cue- “yes, I’m tired as well” responses from others!)
For the purposes of this website, ME and CFS are seen as the same condition. This does not mean I agree with the term CFS, but it’s a lot easier to reach people if I group both terms together and I believe that the things I speak about on my blog can apply to people in all stages of fatigue. I was one of the severely affected people with M.E.- it seriously affected my life and I was chronically and seriously ill for a long time.
Does it depend on what country you’re in?
In the UK, M.E is always, always referred to as M.E. In Australia however, I’ve hardly heard the term since being here and CFS is used the majority of the time. In America, I’ve heard both CFS and CFIDS, so to a certain extent, the term you’re using might be stem from the country you’re based in.
Why should I care?
In theory, as long as you can own your symptoms and you can tell others about your symptoms as needed, the term you use shouldn’t really matter and is completely up to you. I have to say though, if I tell people I used to have M.E, they react in a very different way to if I say I had Chronic Fatigue Syndrome. M.E sounds more severe, and many people who differentiate ME and CFS believe that M.E is more severe, whereas CFS can be healed in a matter of days or weeks.
If using the term CFS instead of M.E brings more awareness to what people are going through then great, but the last thing we want to happen is for people to not fully understand the severity of all of our symptoms because of the umbrella nature of ‘CFS’ (and because it’s easier to say!)
I’d love to hear from you- have you struggled to understand the difference between M.E and CFS? What do you call your illness?
Love and hope,
Katie
Becoming more commonly known as CFS in UK now too
Hi Lynn- aaah, I see. When I left the UK, everyone was still calling it M.E, but it’s interesting that the terminology is changing there too. Thank you for contributing! Katie xx
Hi Katie, It was great to read this, thank you for posting! I’ve had M.E. since i was 12 and I’m now 37. The name thing has pretty much always bugged me! I prefer to say I have M.E. as it does encompass so many more of the symtoms we go through and hints more at the pretty severe form it can so often take. It’s so much easier though, and I usually do, just say I have C.F.S as people seem to know what that means – only problem is they really don’t Know what that means. Sometimes I’ll just say I have a chronic viral infection (which is technically true) but that’s got it’s draw backs as well. I live in Sydney also and wish that it was mostly (if not always) referred to as M.E. When I have the energy and the inclination I will use that and explain what it means – and then add that, that’s what it means in My case – each case being different and unique, sometimes dramatically so.
Hey Eleni- thank you for your comment. I was definitely ill with M.E, but got so sick of explaining what it was to people that sometimes it was easier just to say CFS, like you mentioned. You’re completely right as well about everyone’s case being different and unique- this goes for healing the illness as well.
Thank you Eleni- hope you’re having as good a day as possible.
Katie xx
“whereas CFS can be healed in a matter of days or weeks” – I’m in America. We call it CFS here. I only wish I could be healed in a matter of days or weeks. It’s been months, and I am in no shape to be even close to considered healed. I don’t care what the technical term is, it just sucks. Sucks your energy. Sucks your health. Sucks your life. Maybe we can call it that? I have The Suck.
Ha ha!! Love this, Julie- we should call it ‘The Suck’! I’m like you, I’m not especially attached to what we call it, but I just love to try and help people out of whatever this ‘thing’ is.
Hope you’re having as good a day possible, Julie- down with ‘The Suck’! xxx
Dear Katie ever since I was diagnosed with fibromylgia I have this problem
….go to sleep so tired in the morning I crawl out of bed with severe pain and owerwelmd with tiredness…. Yes that sucks…what can we use for a boost. Love Judy
Judy, here are some articles that might help: one on relieving muscle pain and one on relieving insomnia. If you’d like a little boost, using essential oils might perk you up a little! xxx
Oooooh, I’m down with that too…The Suck! The Big Suck!
Halo Mary yes its bad…I had a double mastectomy 4 months ago and finished my chemo…its like you go to hell and don’t know to find your way back and the worst part I’ve lost my family friends even my children… They just don’t understand. My husband is mh angel he helps me so much…love Judy
I have had ME for twp years now and found the difference to be clear. One is that there are now tests that show the brqin injury in ME. Dr byron hyde for example does not diagnosis people with ME unless the brain injury is shown in ME. I had pre excercise and post excercise spect scans and the brain injury is clear and made much worse after excercise. Also if you look at dr. Hydes definition which he also pulls from melvin ramsey it is clear that ME can be diagnosed quick and has a key charectetstic of muscle fatigability after mental pr physcical exterion cfs may or may npt have this.i have spoken with very fe people that say they have ME that actually have had spect scans done ro even fit into a strict scientific defiintion of ME.
This is really interesting- thanks so much David!