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Must Be Tuesday
01 November 2010 @ 02:05 pm
 So, yeah. from today, people who have my condition, ME, are banned for life from giving blood.

The government has given as the reason for this ban that they are simply bringing donor guidelines into line with those for sufferers of  'other serious relapsing remitting illnesses like MS and Parkinson's'. Those of us with ME mustn't give blood, even when in remission,  because it could make us ill.

Now, two years ago, this massive admission that ME is a serious physical illness on a par with MS - from a health service that has so persistently pushed the falsehood that ME is 'all in their minds' - would have been welcomed as a massive step forward.


Oh, but.

The last two years have seen the link between having ME and carrying a newly-discovered retrovirus, XMRV in your system. It seems unlikely that the timing of the blood ban in the UK is completely coincidental.  

When Canada brought in their own ban earlier this year, they were completely open about the aim of protecting their blood supply from contamination.

Here, though, we are asked to believe that the ban is nothing to do with XMRV; the authorities have simply suddenly decided to stop pushing their 'in the mind' lie, show a hitherto absent concern for the health of people with ME, and accept what we have been demanding for years - that ME is as serious as, say, MS.Just, you know, coincidentally

What depresses me about this is...well, the fact that they have only dropped one lie ('it's all in their heads') because it allows them to push a new and bigger one ('it's nothgin to do with XMRV').  If they didn't have to cover up XMRV, you can bet your life we'd still be struggling to get them to drop the old lie and admit the truth about our illness being 'serious'.  

Depressing to see proof again that everything has to be such an uphill struggle against  people who don't give a damn about truth.

Current Mood: pensivepensive
Must Be Tuesday
21 June 2010 @ 01:48 pm
 Heh. Trying to sort out various old files on my pc and ran across a folder of 'things that made me giggle' I thought I had lost.

Here's a sample:

If you liked new Walt Disney version of THE HUNBACK OF NOTRE DAME,
you'll love these other new Disney versions . . .
By Marv Wolfman

The Inferno by Dante Aligheri

The poet Dante (the voice of Bruce Willis) is led by his friend
Virgil (the voice of Anthony Quinn) on a magical trip
underground to the land of "Heck." Among the delightful
creatures they visit are the lovebirds Paolo and Francesca (the
voices of Andrew Dice Clay and Rosie O'Donnell), the Crying
Trees (the band Nirvana), and the Five Singing Little Devils
(the Jacksons).

Animal Farm by George Orwell

Pigs, chickens, horses -- all the familiar barnyard crowd -- are
the heroes of this charming celebration of teamwork and
diversity. The poor animals, having suffered for years on a
failing farm under the tyranny of the cruel farmer Jones (Robert
Goulet), are suddenly liberated when Jones trips and falls down
a well. Though things are chaotic at first, the kindly young pigs
Snowball (Michael J. Fox) and Napoleon (Eddie Murphy) help
the animals all work together to turn the farm into a model of
efficiency and happiness. After the animals nurse Jones back to
health, he changes his evil ways and promises to treat all living
things as his equal.

Hamlet by William Shakespeare

With his father dead and his evil uncle Claudius (Sylvester
Stallone) now ruling over the once-happy people of Denmark,
all seems lost for poor prince Hamlet (Johnny Depp). But
Hamlet's father (Leslie Nielson) is only pretending to be dead
until he can safely help place his young son on the throne and
his evil brother in jail. Featuring an underwater ballet with the
beautiful Ophelia (Bette Midler) and the loony antics of a wise-
guy skull named Yorick (Rodney Dangerfield), Hamlet's best

No Exit by Jean-Paul Sartre

Old friends Donald Duck, Daisy Duck, and Minnie Mouse are
surprised to find themselves sharing a room in a beautiful resort
hotel. Their every need is catered to by a mysterious butler (Jim
Carrey).. Opening in conjunction with Walt Disney World's new
attraction, Being-and-Nothingness Land.

The Metamorphosis by Franz Kafka

Young Gregor Samsa (Arnold Schwarzenegger), overwhelmed
by the demands of his job as a clerk, wishes each night that he
was a creature without responsibility. He is amazed one
morning when he awakes to find himself changed into a
beautiful beetle, which delights his family and terrifies his cruel
boss (Jerry Seinfeld), who is horribly afraid of insects. Jiminy
Cricket guides young Gregor to a happy community of insects
that nest below the dull city of Prague.

Oedipus Rex by Sophocles

Thanks to the advice of a wise old owl (Sally Kellerman), a
young boy (Neil Patrick Harris) avoids many traps set by the
evil fates (Candice Bergen, Cybill Shepard, and Mary Tyler
Moore) to help save Greece from disaster. The boy, who was
stolen from his family at birth, is finally reunited with his
loving mother (Barbara Streisand) and father (Bill Cosby).

Waiting for Godot by Samuel Beckett

Vladimir and Estragon (the delightful Chip 'n' Dale) wait for
Godot (Rush Limbaugh), who arrives with limitless presents
and makes all their dreams come true.
Current Mood: mellowmellow
Must Be Tuesday
30 May 2010 @ 08:25 pm
Current Mood: accomplishedaccomplished
Must Be Tuesday
24 May 2010 @ 11:08 am
Struck off 
Current Mood: sleepysleepy
Must Be Tuesday
10 May 2010 @ 04:26 pm
How bad of me is it to be feeling grouchy about the following:

I have masses of realcycle stuff sitting all over my floor in two rooms, waiting for people who have failed to collect and put off to later time.

One man asked for household things for a young woman just moving into her first home from a hostel. I sorted out five boxes of stuff, plus a chest of drawers, lamp, storage baskets, duvet,  for him because this seemed like such a good cause.  By the time I finished sorting, cleaning, washing and packing it all in time for it to be collected on Sunday, I was shattered (but happy, because I had Done Something Useful). A van was to come and collect it all before 2pm. At 3.50pm I send an email asking if anyone is coming to collect it, or if we need to arrange another day. Much later in the evening, I get a reply 'oh, sorry about the non-collection, the van driver never showed up, is it ok if I come over in my estate car on Tuesday?'   Was there some reason he couldn't email me or phone me to let me know the collection was off? We stayed in all day Sunday for that (not that I was fit to do much else) - - but really I'm angry because the young woman in question obviously needs her stuff and they are messing about like this. I am unconvinced all the stuff will fit in his car - I sorted out so much because he specified that they wanted lots and had a van to move it. Am now very glad Anth dissuaded me from knackering myself trying to dismantle a canvas wardrobe for him to have.

A second but smaller thing is that a lady who was meant to pick up old towels and cat beds etc today on her way back form picking up her son from school - just emailed me 'oh, he felt sick so i brought him home, can i come on Wednesday?'.  Now, taking the sick kid home - of course, no one could object. but having let me sort out a large pile of stuff (also sitting downstairs imitating a trip hazard) she isn't prepared to make a trip specially to get it. No, it's convenient for her to pop in next time she's in the area...

Sorry guys, but we are not a storage facility for crying out loud!

I fell bad about being cross, but not entirely bad. Both these people posted 'wants' and realcycle states that it is polite to pick things up quickl;y.
Current Mood: grumpygrumpy
Must Be Tuesday
06 May 2010 @ 05:33 pm
Well, I tried but couldn't find a youtube clip or anything of my favourite election-type song. So here are just the lyrics

When the People Speak
Music & Lyrics by Dougie MacLean. Published by Limetree Arts and Music

For too long we’ve heard them laughing at our dreams
Ridicule our reasons and blind ignoring what it means
For too long we have believed the walls they made
But now we see a shining light and we are not afraid

When the people speak it’s not with corporate lies
It’s not with indecision no or academic bows and ties
When the people speak it thunders through these hills
It’s not a thing that’s mild and meek
When the people speak

There’s a fear that’s made to keep us in our place
Pacify our anger and justify our fool disgrace
There’s a fear made to destroy and to degrade
Bur now we see a shining light and we are not afraid
Current Mood: hopefulhopeful
Must Be Tuesday
26 April 2010 @ 06:14 pm
Dirge without Music - Edna St. Vincent Millay

I am not resigned to the shutting away of loving hearts in the hard ground.
So it is, and so it will be, for so it has been, time out of mind:
Into the darkness they go, the wise and the lovely. Crowned
With lilies and with laurel they go; but I am not resigned.

Lovers and thinkers, into the earth with you.
Be one with the dull, the indiscriminate dust.
A fragment of what you felt, of what you knew,
A formula, a phrase remains, --- but the best is lost.

The answers quick & keen, the honest look, the laughter, the love,
They are gone. They have gone to feed the roses. Elegant and curled
Is the blossom. Fragrant is the blossom. I know. But I do not approve.
More precious was the light in your eyes than all the roses in the world.

Down, down, down into the darkness of the grave
Gently they go, the beautiful, the tender, the kind;
Quietly they go, the intelligent, the witty, the brave.
I know. But I do not approve. And I am not resigned.
Current Mood: pensivepensive
Must Be Tuesday
12 February 2010 @ 10:58 am
Technically, this is an M.E. entry, since it illustrates very well the way that ME has come to be deliberately mis-labelled as CFS for study purposes -and why the IC trial failed to find XMRV. But it's very funny, and it has penguins, so I crave your indulgence.

The Truth About Penguins
By Peter Kemp

I wanted to study the nature of penguins.

The 'Canadian' definition of penguins is that they are:
• Flightless
• They can swim
• Largest species up to 1.2 metres tall
• They eat mostly fish
• They lay 1 or 2 eggs
• They generally live in colonies

The 'CDC' definition of these birds is that they are:
• Flightless
• They sometimes eat fish
• They lay eggs
• They can swim

The 'Oxford' definition is that these birds are:
• Flightless
• They lay eggs

The 'Oxford' criteria was chosen for the research as the others were too difficult to apply. 100 subjects who met the research criteria were studied in Sub-Saharan Africa.

The research found that penguins:
• Live in deserts
• Cannot swim
• Are up to 2.4 metres tall
• Weigh 200 pounds
• Capable of speeds up to 40 mph on land
• Are mostly vegetarian


The research has discovered the truth about penguins. Those funny black and white birds waddling on the ice and swimming in the sea are making fools of everyone. They are not real penguins and should be excluded from all further research into penguins.
Must Be Tuesday
03 February 2010 @ 04:57 pm
I find I'm wanting to post more these days about the M.E. side of my life, yet don't want to 'force it' on people who read my LJ here or my Facebook.

The answer I have come up with is Wood of Thorns, a blog devoted just to that aspect of my life. Because it is only an aspect. My illness is not me, however much it sometimes feels that way. Keeping it separate should help remind me of that!

Must Be Tuesday
19 January 2010 @ 04:27 pm
So, yes. Welcome to my day and the following hate post on one of the ME awareness sites I follow:

Davey P 'Methinks the lady doth protest too much.' Surely if this was a real disease it would be unanimously accepted as such by the scientific community? Just because you slap a scientific-sounding name on your laziness doesn't mean it's anyhting more than laziness. I had a look on for a facebook group called 'YES! CANCER IS A GENUINE CONDITION'. Guess what, it doesn't exist, because the disease wasn't just made up by its 'sufferers'. I pity you all.

Had to go to work today (look it up in the dictionary) so wasn't able to check tha Daily Mail, by the way.

What to do with such awful, ignorant full-of-hate-and-total-shit people?  They actually set up a Facebook group of their own to post hate messages and mockery of M.E., but it has been taken down (I assume due to complaint levels). So now they are 'cleverly' posting their garbage on support pages. You know, the places we go to exchange information and seek support when a day seems intolerable. How brave!

Seriously, WHAT does one do about such people? They are further beyond my comprehension than any space alien could ever be - can they really be from the same human race as I am?

Edit - and within a very short time, that post has been removed and hopefully the poster banned. But it was up there long enough that someone already feeling suicidal could have popped by the site looking for support and seen that instead. Had that happened, I suppose the poster would have been proud of killing off one of us pathological liars...
Current Mood: distresseddistressed