Tuesday, 29 June 2010

Spectrum of ME symptoms

Interesting article on engineer turned children's writer, after being struck by ME. Chris Vine admits he is not one of the most severe cases - brain fog/mental exhaustion were his major symptoms - but he had to give up life as a high-flying engineer.

For Vine, coming to terms with the restrictions on what he could do, instead of winding himself up about them, was pivotal. “Chill out, calm down, accept what you can do and enjoy it. Get maximum benefit out of what you can do rather than being furious that you can’t do more. Once I got that, it really gave a kind of pace to it.”

This is what we all do intuitively, I think, it is really the only way to cope. But not so easy when you are severely affected or have a lot of pain (as I recall, it is almost impossible to chill out when you are in constant pain). It's great that this former engineer has recovered to the extent he has - though he is by no means well - but I also think it's so important when you are talking publicly about ME to acknowledge - as Vine does - that there is such a wide spectrum of suffering. I also like his reference to a plateau, I think that is how a lot of us are, we get to a stage that we never get beyond, and that is as good as it gets. This is not defeatist, this is realistic - I have learned the hard way, like most, relapsing every time I overdo it. And we can also slide back at the drop of hat, for no reason at all.

The AfME facts quoted at the end claim: 'With time, most people can expect to see an improvement in their symptoms, although not everyone recovers to pre-illness levels.' I must say that I don't know anyone with ME who has recovered to pre-illness levels. I feel their statement is misleading, but AfME are known for being a bit dodgy. I am not sure why they describe themselves as 'the UK's leading ME charity'.


Cusp said...

Hi NMJ, Thanks so much for flagging up this article. Really interesting and I think it will give some people hope that there can sometimes be a way to find another life.

You, and he, make two other important points in saying that there is a huge spectrum of symptoms and ability/disability amongts PWME and the point about plateau. About 4 years ago I went to my GP and my herbalist and said just that 'I seem to have reached a plateau beyond which I just cannot progress' and it seems that that's just the way it is. Doesn't really matter what I do...that is where I am.

nmj said...

Hey Cusp, I think that is very common to plateau.

Maybe I got it wrong & these are not AfME's words exactly, maybe reporter has paraphrased and just added their address as information, but either way the statement is wrong, and AfME are still dodgy! If you go to their webiste and look up facts, they have bizarre categories of recovery, I don't fit into any. They have missed out a huge category between 2 and 3.


nmj said...

And, yes, i think it is common to discover creativity you didn't know you had when something catastrophic hits...

Nicky Reiss said...

You are right about AfME being dodgy. There's an FB group called "The Truth About AfME". They pay a very large salary to the CEO; there is a lack of transparency about the way their funds are used; they support the lightning process (which I consider to be potentially very dangerous for some people with ME); they "work closely with Wessley and his colleagues on new research initiatives..." ... and more. Dodgy indeed!!

nmj said...

Nicky, I will look up the FB site, LP is just bizarre as a therapy for ME, it is ludicrous.