The Iris Murdoch effect

or some things I have heard over the last few days spent with my Mother:

I think I was born in 1938 or was it 1976?

I'm not telling that woman how much I earn, she's got a loud voice.

That woman didn't even know how to cook a baked potato, she said you didn't peel it.

Look I can stand up, does that count as walking?

I gave that cleaner £50 for doing the laundry, she said it was a bit much.

I haven't been down stairs for 5 years, I did go last week once.

I couldn't eat another thing, unless it's pudding.

Me, confused? I'll have you know I 'm bringing up 2 small children on my own.

I've never eaten a sandwich in my life, well maybe a prawn one.


The EMI bed beckons.

The Gibson report is out

At long last someone is listening to ME patients.

To Dr Ian Gibson MP I can only say thank you.

Read Invest in ME's response here

Read the full report here

Not a very NICE 36 hours

What is going down with The One Click Group Response - NICE Guidelines is entirely redolent of an episode of the 24 television drama series that One Click Group Technical Director young Ben, is so fond of.

The events of the last 36 hours delineate the following in relation to The One Click Group Response - NICE Guidelines.

1. Yesterday, NICE wrote to One Click and refused to accept The One Click Group Response - NICE Guidelines because the document had not been produced via its online proforma piece of paper. This is despite the fact that a precedent had been set by the 25% ME Group whose document was to be accepted by NICE in document format.

2. This morning, One Click is given the news from both the Gibson ME/CFS Parliamentary Inquiry Office and the Countess of Mar (all in writing), that the One Click evidence will be accepted and that NICE is proposing to type up the One Click evidence line by line to insert it into their online proforma, wasting British taxpayer's money by employing this fool strategy.

3. This afternoon, One Click receives an email from the NICE Chief Executive Office, one Andrew Dillon, who states that NICE has changed its mind and will not transfer the contents of the One Click document on to the proforma. This shows that NICE either lied or deliberately misled both Dr Ian Gibson (MP) and the Countess of Mar. Dillon's email indicates that:

3.1 The One Click Response - NICE Guidelines will not be formally acknowledged, recorded or published by NICE.

3.2 NICE will not respond to any of the points made in the document.

3.3 NICE will not accept the One Click evidence and it will not publish it on its website.

It states in the Guidelines Manual, April 2006, that NICE must "Treat Stakeholders in a collaborative and transparent manner." Really? Has any of this been collaborative and transparent and designed to help patients?

Not to put too fine a point on it, has NICE CEO Andrew Dillon completely lost his head? Is he on medication or has he overindulged on wacky baccy during office hours? What is the matter with this man who is supposed to act with due diligence and care towards the millions of the sick in the United Kingdom?

Where is NICE Chairman Michael Rawlins in all this? Has he been stuffed and gagged in the office cupboard or is he sitting on the dunce's stool with his fingers stuffed in his ears on the basis of hear no evil, see no evil and speak no evil and all will be smooth and retirement peachy?

For the One Click document to so petrify NICE and the Wessely School psychiatrists as it clearly has done is quite probably the biggest compliment that we have ever been paid.NICE is acting against its very own regulations throughout this extraordinary drama and it will be held accountable.

We will keep you all posted of developments.

This information is available on the ONECLICK group website

Something to look forward to

The latest crop of holiday brochures are now landing on the mat. Not sure where we will go next year yet, ( proabably Greece just for a change) but meanwhile it is all systems go for our long weekend in Denmark in 2 weeks time. We are going to Tonder on the marshland in southern Jutland , near the German border and will be partying with our friend Ms A who is celebrating a big birthday.

Counting down the days now. I need something good to happen for once.

Down in the dumps

Sometimes this ME just gets to you. No matter how upbeat and cheerful you try to be the reality of having a debilitating illness for 14 years just gets to you.

This is one of those times. My GP suggested Prozac and I went as far as collecting the prescription but it just sits on the cupboard unopened. I realised that nothing could be that bad to make me take a drug like this with all it's attendant risks of suicide and goodness knows what else side effects. It might have had some effect on my pain but somehow I don't think so.

I feel like I have slipped back 10 years, I'm sleeping about 16 hours a day, the smallest task is so tiring and my pain level is through the roof. I have night sweats like I have never had before then 10 minutes later I am shivvering. Brain fog is so bad I can't get the right words out, trying to offer WH bread and butter pudding for dessert tonight I actually said steak and kidney pie! The RA is worse too but then I have had no treatment for about 3 months so it would be wouldn't it?

I haven't even got the energy to make another video to complain about all this constructively.

I remember a net-friend of mine whose motto is 'this too shall pass' , I just wonder how much longer I have to wait.

This week, mostly

I'm reading.....

And that's about it!! I have read several books in the last week though:


A Boy of Good Breeding; Miriam Toews , Courtesy of Trashionista (I WON it), thanks folks. This is a real, feel-good, warm read for a cold winter's evening. I loved it.

Recipes for a Perfect Marriage: Kate Kerrigan. Just one step away from being too twee, the ending was fairly predictable with a couple of twists along the way. The main character Tressa was just a bit too feisty for my liking and actually I didn't like her much, but it did pass a couple of evenings without using much brain on my part.

And What Do You Do?: Sarah Long. To say this was one big cliche is perhaps to oversimplify. The original idea was good but really, stay-at-home mum in Paris, has affair with local doctor to-the-ladies-who-lunch, whilst hubby has a fling with his researcher and generally acts like God, well we all know the type. Or at least the caracature, and as for the ending, well, totally unbelieveable. As you may gather I found it a bit light.

Toast: Nigel Slater. Not a novel this one but a memoir and actually my second reading. I love this book. Nigel must be a similar age to me and being brought-up about 20 miles from where I was it brought back a real nostalgia for those things we ate in the 60's. I found another connection in that my father had died at about the same time as his mother and in some ways much of the family reaction was similar. For anyone brought up in the sixties this is a must read. Get some sherbert fountains and jubblies to suck whilst you read it.

Not very NICE

Now I wonder why Prof Wessely is pushing Cognitive Behavioural Therapy and why the recent NICE draft proposals are full of it when some of his own research seems to imply it is not the be all and end all of treatments.

Just read this:

CONCLUSIONS: Cognitive behavior therapy for chronic fatigue syndrome can produce some lasting benefits but is not a cure. Once therapy ends, some patients have difficulty making further improvements

Am J Psychiatry. 2001 Dec ;158:2038-42
Long-term outcome of cognitive behavior therapy versus relaxation therapy for chronic fatigue syndrome: a 5-year follow-up study.
A Deale, K Husain, T Chalder, S Wessely

Interesting isn't it??

So why then are we supposed to grin and bear it?

All quiet here

Mr Naughty is in the vets for twenty four hours. His rotten, smelly, horrid teeth have finally got the better of me and despite the 5 antibiotic injections, the course of pills, the cortisone treatment, I decided yesterday that the time had come to do something about them. Accordingly, today he is having his teeth cleaned and any real horrors removed. This meant an overnight stay. I mean, how can you starve someone who insists on eating 7 times a day? And what about the other two? I'd have to starve them as well.

So 5pm last night he was unceremoniously bundled into the basket and he whined and wailed all the 500 yards to the vets office. Nelson has not quite got to the hysterical stage in Misty's absence but it's a close run thing. He slept ON TOP of me last night, all night and has now decamped to a new bed on the chest of drawers, after a breakfast of his favourite food. Goggins as per usual is totally oblivious.

It's weird without Misty though, no-one jumping around the bed as I try to get up, no one tripping me up on my way into the kitchen, no-one grabbing the first bowl of food. He is the one of the three who spends most of his time near me, particularly in this wet, winter weather we are currently having. It's odd really, he can be most annoying most of the time, but as soon as he isn't here, I miss that little grey bundle lying on the sofa chewing his feet and purring for England whilst he does it.

I've just called the vet, he is doing fine and has come around from the anesthetic just fine. Normal service will be resumed at 6pm when I collect him!

I'm so excited

I got a little mention, well one word only, my name, Jas, on Joshilyn Jackson's website, Faster than Kudzu. She was answering my comment about her cat and his picture on her answer comments day.

Wow. I am impressed, I have had a conversation (well a dialogue really) with a famous writer. Strange it was all about cats though. Better read her other book now!

Regrouping

Just back from a frantic few days away trying (in vain) to sort out my mother's woes. Am absolutely pooped so will be back here with some really interesting stuff a bit later when I've got my breath back!

Not a NICE job

I have finally finished reading and making comments on the NICE guidelines for CFS/ME. I've sent a copy to NICE and also a couple of copies to other interested parties I know.

The awful thing about it is that it wasn't nice at all. Most of the document is deeply insulting to sufferers of true ME. When 61% of the Guideline Development Group is firmly sitting on the pysychiatric side of the table before the discussion even starts, we ME sufferers know we have problems.

I am always a believer in the adage 'The Truth will out'. In this case it may take a very long time, but oh yes it will, believe you me, it will.

Bonfire night and the feline members of the household

Well it's that time of the year again when everyone has bonfires and fireworks. The day itself is actually tomorrow, Nov 5th, but fireworks have been lighting up the skies and booming out in the dark around this valley for several weeks already.

Last night there were several lots behind us, as there had been on Wednesday too. This all really upsets the cats who shriek and run off and hide behind the nearest furniture. When the bangs are really loud and close Misty rushes up the stairs and cries on the bed. Nelson shakes and goes behind the sofa until the noise has well and truly gone, emerging hours later looking weak and shell-shocked. Goggins wants only WH, cuddling up close and digging his claws in if he thinks he is about to be moved.

Tonight, being Saturday, we will get the loudest and nearest fireworks, in the gardens adjacent to this one. Our strategy, worked out over the years, is to distract the cats from some of the noise by having loud music blaring throughout the house. What it does for us is secondary but last year I wore ear plugs! If it all gets too hysterical I go to bed and attempt to read or watch TV and one by one, the cats creep up, in the brief interludes between bangs, and jump on my bed with me, jammed up against me and in Misty's case down the bed and under the covers. Nelson lies on my stomach and I have to hold him tightly through the loudest bangs, he can't understand all this noise and cries real tears and looks into my eyes imploring me to stop it. Goggins sits close but not too close so as not to ruin his reputation as the 'hard-man' of the three.

WH has to sit downstairs as even Goggins abandons him when the prospect of a warm bed is beckoning. Goggins is no cissy but in times like these he becomes a real pussycat.

I've bitten the bullet

and recorded a response to one of Greg Crowhurst's videos about publicising the injustices done to ME patients.

It's my first attempt, it's not very good and it's here. I was totally freaked out doing it and apart from forgetting what I was going to say I wasn't sure how the camera worked either!

If it helps the cause then it was worth it.

Trick or Treat

We had the usual rash of Trick or Treaters the other night for Halloween. One group consisted of a very small fairy with bright pink wings and multi coloured dress over a bright pink fleece jacket, a slightly larger 'Barbie' type of fairy, 2 grotesques with green faces and black clothing, a large black cat with home-made mask and two witches with neon pink hair sharing a pointy hat. This was just the family - 3 grandkids, 2 daughters and 2 friends. This lot were picky about their loot, grabbed the bag from which Grandad (WH) was trying to distribute small items of booty and sorted through it, taking all the best sweets much to Grandad's disgust. Grandad, meanwhile, had eaten 6 packets of 'kiddy sweets' before the first knock on the door. I gave out an apple apiece.

"Cor, I'm not having that" said 8 year old Grandson "What do I want one of those for?"

"Because you like them" I retorted, "You can take it to school tomorrow for your lunch,"

"Well I'm just not carrying it. OK?"

"It will look big in your bucket," countered an Aunt.

"S'pose so, huh. Everyone stop looking at me." The offending apple was buried beneath the other sweets.

"Well I want grapes if I've got to have fruit" said the smaller brother and made for the fruitbowl.

The two fairies were counting their haul and stuffing fizzy sweets into sticky mouths. Their booty was carried in orange plastic buckets which were decorated to look like a pumpkin, the buckets already half full although this was only their fourth stop. A solitary apple was atop a mountain of the worst kind of sticky sweets. E numbers ruled, OK.

The group finally left and made off down the street. WH and I retrieved our dinners which were congealing on the stove and started to eat. At the second mouthful the doorbell rang again. I sent WH.

This time he was confronted by a larger group of about 10 assorted older kids.

"Trick or treat," the throng boomed out, followed by another single voice:

"And we don't want no fruit."