Saturday, May 12, 2007

International ME/CFS Day 2007

Red Flower

Not sure what this flower is - bulbs planted in a hurry between showers. Might it be a ranunculus?

Today is International ME/CFS Day. It's also Florence Nightingale's birthday - some people believe she may have had ME. She certainly had some sort of disabling, relapsing and remitting illness. She may have had chronic Brucellosis, as suggested by D A B Young, formerly principal scientist, Wellcome Foundation. Maybe that's another thing that could be checked for in ME/CFS patients.

Was very pleased to see that Dr Crippen included a post from Mary in this week's BritMeds about her recent consultation with her (locum) GP over her DLA renewal application. I have always been looked after both well and kindly by my GPs, but I have heard many stories similar to Mary's.

Dr Crippen also included a link to an article in the Scotsman about the spread of Ticks and Lyme Disease in Scotland. The lady in the article was misdiagnosed with ME, and I wonder how many other ME patients may be misdiagnosed when they really have Lyme.

This time last year
we were staying with Sarah in her shared house in London. We demonstrated outside the Department of Health, and I presented documents from the MEACH Trust to 10 Downing Street. We did some gardening too.

This year we have had too much on our plate with Dad's hospitalisation and then discharge into a nursing home to have been able to travel that far - we haven't even made it to the caravan yet.

Pink flower black pollen

I like the way the raindrops have spattered the black pollen around the petals.

PS The knitting is going very slowly (and is also very mistakey!). About 1 or 2 rounds a day. But I think (hope!) it's longer than it was the last picture I took. I don't think John will mind the mistakes (he's not a knitter, so probably will think it's supposed to be the way it is), nice soft warm wooly socks, who cares about mistakes.

Knitting update


Mary said...

ME/CFS Day, who'd've thunk it. No one even got me a card. *sobs*

The sock is looking good. I haven't tried the round variety of knitting voodoo yet. One stick per hand is plenty!

cusp said...

Great flower ---some kind of anemone or of that family?

ME/CFS day was, as usual, a bit of a damp squib --hardly surprising given the weather ;-). I wonder what it takes to get people together and really interested. The problem with ME/CFS to outsiders, I think, is that it doesn't appear to be tragic, life threatening or make you look brave and pioneering. Its perceieved as something that makes you a bit of a misery and a party-pooper ('We all get tired')

On the other hand, we should appreciate the efforts that some PWME make to get informative publicity, funds, political changes out in the world. Even within the 'ME world' there's enough back-biting, resentment and quarrelling to make a pack of wolves look shy ---- you only have to read some of the Newsgroups.

Fighting with each other will never help any of us. Sticking together and changing the general perception of ME might.

Mary said...

Alas, ME/CFS simply isn't exciting.

Only very rare and unusual cases die because of it, and there are no shocking visible symptoms. There are no lumps or rashes or other semi-reliable indicators you can "look out for". As Cusp says, we're not about to die, and we're not battling or being "inspiring" (partly because we're not about to die).

There's also the amazingly high proportion of fakers and hypochondriacs that march under the ME banner, plus on the other side of the coin, those who actually have undiagnosed Lyme or MS or coeliacs or whatever. It'll never be a cohesive group, largely because we don't all have the same illness or even the same symptoms. All we have in common is this inaccurate and ill-defined label, stuck on us by a medical profession who don't really know what's going on with us. How's that going to educate or interest The Public?


david santos said...
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Mary Anne said...

your socks are looking great and I do like that colour.

keri said...

What a beautiful color for those socks, looks just like your flower!

littlemithi said...

Beautiful flowers Maggie - same colour as the socks! You can go gardening in them. Hope all the knitting (and all those new books!) are keeping the MS-blues at bay ...

Anonymous said...

hi< I have fibermyalger think thats how its spelt, and have just started knitting again and boy is it slow going, knitting matinee coat for daughter who is having a baby in July, by the time I finish though might be ready for grt grandchild never mind at least I tried, so nice to find a blogg with people in the same situation.I live in Abersoch.

Glenys said...

Hi, just popping in to say that I like your blog and have one written to encourage women who suffer from chronic illness. I have fibromyalgia, chronic fatigue syndrome and possibly ME or Lupus. I should find out what it is this Thursday.

Blessings and God's comfort,