Do you call it CFS or ME? What are the implications

[Antony_M]

Hi everyone,

I was diagnosed about 2 years ago and have had difficulties with the condition for about 4 years now. The diagnosis I was given was Chronic Fatigue Syndrome ( CFS).

My understanding is that use of the term Myalgic encephalomyelitis (ME) by the NHS, has fallen by the wayside and that new diagnosises​ are given simply as CFS.

ME seems more associated with activists or those who believe their symptoms to be more severe. Though it may just be that they were diagnosed earlier and this was label that they were given and continue to use. ME also seems to imply that it's condition of inflammation of the brain and spinal cord, which appears to have never been proven.

Does it matter which term you use? Does clinging to the 'old term' put you at odds with the NHS? Previously people may have been diagnosed with conversion disorder or earlier terms.

Best wishes to everyone with this condition regardless of what we call it.

[Bevvy]

An interesting post.

I have had ME for a number of years and use that term because that was what I was diagnosed with!! Yes am aware the condition name has changed and at times do use term of CFS.

I am certainly not an activist but find term CFS is not necessarily helpful - chronic fatigue syndrome can undermine the condition which has far more to it than fatigue!! Especially when speaking to the "ignorant"

[Antony_M in reply to Bevvy]

I've had an ongoing problem with ignorant people. It's true to say that I have become isolated from some friends and family who do understand or wish to understand the condition; many of them think that it's a response to a virus that lasts about 6-months then goes away. Or, they expect it will be replaced with another diagnosis in due course.

I recently met an acquaintance at a local leisure centre. Some days he would walk with a stick and some days he wouldn't need it. He's approaching retirement and has just been diagnosed with multiple sclerosis in his spine, though he had has health problems for years. He was quite shaken up by this news and upset when one of the people he told, immediately changed the subject to start talking about someone else, with another condition that he thought was worse off. This upset him because he felt his condition was being dismissed.

At this point I realised that it doesn't matter what label you have, other people often think it won't happen to them, or if it did, they'd manage better. I had though that a harder hitting, more well known label, would bring more understanding but now I'm not sure.

[Patdoyle in reply to Bevvy]

I don't like the CFS term very much but when I was diagnose in 2010 the neurologist called it ME but I was referred to the CFS clinic. I have to admit I was astonished to be diagnosed with it because apart from crippling fatigue I have a list of other symptoms which I still find hard to attribute to CFS. Even my family think you sleep all the time whereas I struggle to get refreshing sleep. All very wierd. When people ask why I am unable to do things they look at me as though I have 2 heads when I say I have ME/CFS. I used to be always doing things and now do very little. It robs you of a life.

[Antony_M in reply to Patdoyle]

The CFS clinic I was referred to seemed to have an understanding of my neurological symptoms during therapy sessions, though at first they were hesitant to accept my case at all because of functional neurological disorder noted by the Neurologist (a marked weaknesses in the right side of my body, plus symptoms traditionally associated with ME).

This condition is certainly life changing and gives nothing back, I have a very modest existence compared to others the same age and can sympathise. Having to plan everything and the process of explaining everything again to new people, often requires more patience than I'm blessed with.

[Patdoyle in reply to Antony_M]

Yes it certainly changes your life that's for sure. I had to give up work which was hard financially and also I miss the interaction with people. I hate being confined to the house and a little walk around the block every day. Even when I meet people I can't stand for long so can't really chat. One of my neighbours asked my son what was wrong with me because I don't want to chat anymore. He thought I was being standoffish. I would love to talk and interact with people but I just can't. I hate this illness because it takes away so much. My personality has completely changed. Used to be outgoing and now I am more like a recluse.

[Antony_M in reply to Patdoyle]

Socialising can be tricky - if you can recognise someone's face can you remember their name, can you find the words and put them in a sentence, can you get the timing right, can you maintain an appropriate facial expression, can you remember facts to answer their questions.

Even if everything works, it can be tiring, particularly with people who don't know you well. There's more to this than just being 'fatigued'.

[Patdoyle in reply to Antony_M]

Yes yes yes I have a problem definitely with meeting anybody new even if I answer the door to a stranger. Can't express myself and feel like they are looking at me as though I am a bit mad. When my good friends visit ( few and far between) I actually feel fatigued just trying to follow the conversation and trying to sound sensible. This illness isolates you. I don't even go to the shops anymore mainly because I feel too weak but also I don't want to have to talk if I bump into anyone I know. Every day I wake up and think maybe today I will improve and try to be positive but it's hard when you feel ill not just tired.

[Evelyn61]

I found this chain very interesting because I can relate to all of it. My CFS as my doctors call it was caused by total burn out. I am lucky in the fact that I can still work part time in an office, but again can relate to finding the right words. As for socializing - its like I hit a brick wall and have to go home after a short spell even if we are only out for supper. I do have some super friends that have been there from the start and know what I went through to get the CFS. I have a problem with weight, as in I burn off more than I take in. Weighted myself this morning and back to being clinically under weight. Been accused of making myself sick and not eating, which is not the case, just seems to be that it doesn't matter how much I eat, the effort to do things takes more out of me that I can put in. Really enough hearing everyone else's stories as we are the only ones that really know how it is.

[Antony_M in reply to Evelyn61]

It seems that many people struggle to comprehend this condition and attempt to frame the individuals that they met who have it, in their own terms, however short-sighted these may be.

I've currently got the opposite problem of weight gain, though I also went through a period of being very thin. It's not easy to manage at all.