The CFS is not ME row

September 21, 2012

Before I joined Twitter I didn’t realise that there was quite a row going on over CFS and ME.

Now that I’ve been on twitter for a while – I have seen so many tweets on this subject.
Eg :
Your CFS isn’t as bad as our ME
We have ME and its more serious than your CFS
If you had ME and got better – then it wasn’t really ME in the first place. And maybe “just” CFS.

Etc Etc etc . . .

And I just want to say here – I am sick to the back teeth of all this.

My diagnosis was CFS.

It was what the GP called it on the day – after the other stuff had been ruled out.
It took a struggle of more than 12 years to finally get a diagnosis at all.
I have a big list of symptoms to deal with – luckily not all at the same time.
(I listed them in an earlier post today for info.)
Frankly I don’t care if it is called CFS or ME. All I know is – it has been a very big problem in my life, for a very long time.
I also know I am not anything near as bad as many out there – who have a more severe form of CFS or ME.
I have met people with CFS who have been much much worse than me.
And I have met people with ME who were less affected and having a fuller life.
Some people with CFS have had loads of tests – some just a few.
Some with ME have had extensive tests – but also, some just a few.

I don’t think there is any “black & white” with this.

I do understand the reasoning for many people and charities wanting the name CFS scrapped – and I agree it does nothing to convey the seriousness of the condition. As people just hear the word “fatigue” and mentally dismiss it as not very important.

But I do feel that we should all be on the same side.
Whether CFS or ME.
I mean they are both bloody awful at times.

Surely ?

Any thoughts/opinions/comments very welcome.

julie
Sep 21, 2012 @ 16:15:09

Hi, I think the main problem here is not the name of ‘it’ but moreover what ‘it’ is. CFS and ME are both listed as separate conditions and to be diagnosed with CFS you need to have long term fatigue and I think it is 4 other symptoms. whereas ME has 60 different symptoms. This means that a lot of people with CFS do not have the same illness as ME and because of all the ‘we call it CFS now’ GPs,there are may people myself included and I suspect you too, that have been diagnosed with CFS when in fact we have M.E. M.E can go into remission this may lead people into thinking they are ‘cured’ I was once ‘cured’ but it came back.

Jackie
Sep 21, 2012 @ 20:28:52

I totally agree, I was diagnosed with M.E. 16 years ago after never fully recovering from Glandular Fever 19 years ago. Over the years Doctors have also called what I have CFS and PVFS. What it’s called makes no difference to me, I can’t see that it matters. All I want is to be well. I’m not going to waste what little energy I have getting wound up over a name. Hopefully they will find a cure soon.

Janelle
Sep 26, 2012 @ 05:48:30

hi Anne, I agree with you that we should basically stick together and not pick on one another.

Of course there are some people with a CFS or ME label who are genuinely misdiagnosed and do actually have an other diagnosable disease; these would receive better care under their proper diagnosis, but we are not discussing them.

While it’s quite true that various diagnostic criteria are different and that this constitutes a problem, it doesn’t follow that people have the various diseases described by the various diagnostic criteria. For instance, there is no such clinical entity as Oxford-CFS or NICE-CFS. These capture patients with a variety of different diseases (as demonstrated by the Newcastle report, for instance) including our disease, undiagnosed multiple sclerosis, etc. There is also no such clinical entity as Fukuda-CFS, nor was this inclusion even intended to actually describe a particular disease or syndrome. Again it includes us plus people misdiagnosed, including possibly with self-resolving forms of post-viral fatigue syndromes (like mononucleosis).

The difference between the patients with an ME or a CFS label is what country they live in and, in a country where both are used, what bias their doctor has.

There are a variety of severities and descriptions of our disease or disease spectrum, but this is not unusual in the world of disease. There are four progression patterns to MS and patients may be able to work part-time or may be severely ill or die. There are different types of Lupus and patients with SLE, the systemic form, vary greatly from one another in symptoms, severity, and organs affected.

You might like Samuel’s related post:
http://thekafkapandemic.blogspot.com/2012/03/characterization-and-unaware-mild.html

A Physical Disorder Unknown « Cathi Carol
Oct 21, 2012 @ 22:24:07