Day Fifty-two: lame wings

While I rested my 'lame wings' last night (bordering on a relapse), I watched TV. A rare enough occasion.

I watched the X-Factor, I know... an even more rare occasion.

As there were many breaks in the program, for my taste anyway, I finished three sudoku puzzles in the Irish Times newspaper in the meantime.

Also I can't say I am a fan of all the extra dancers and the gimmicky hype, but boy was I pleased to have heard this young woman Rebecca Ferguson sing. A beautifully stunning slightly eccentric looking singer with a voice that no one can better.

Thank you Rebecca for making my night of nurturing my 'lame wings' special.

day Fifty-one: the scares about a virus...

Was not going to write a blog today - looking for a computer free afternoon/night as I am tired... yet again...

But before I turn of the computer my email box showed a few messages.

One was a message to members of the M.E. Chat Room on Facebook, posted by Vikki Walker: her message follows below in italic

There has been a lot of talk about the XMRV virus and it's link to M.E./CFS. A new minefield to deal with, as far as I am concerned. I try not to get too involved into new findings as they turn up on a regular basis. This one however is not going away, and now countries all over the world are banning people with ME from donating blood... and at the same time they are telling us with M.E. that it is all in our head...

Although I have not given blood, I do have worries about whom I might have infected...

The message is to work 'aks' for a policy chance in the U.K. I can imagine that the policy chance is needed in many more countries other than the UK....

So, please make your voice heard, whereever you are.

Thank you

Corina

Subject: UK POLICY CHANGE CAMPAIGN NEEDS YOU!

YOUR TIME IS NOW

For over 25 years, all evidence of viral infections and immune abnormalities in M.E patients has been suppressed. Ignored. Buried.

Instead, the Government shut the files away in a secret Medical Research Council vault, locked for over 70 years, and listened to a group of unconventional psychiatrists, authorizing them to control policy for patients.

NOW THERE IS XMRV

In 1991 a researcher at the University of Pennsylvania discovered a brand new retrovirus in the blood of M.E patients. This information was deliberately buried for 18 YEARS until in 2009 the retrovirus XMRV was uncovered by the Whittemore Peterson Institute in 67% of M.E/CFS patients.

Further evidence of Murine Leukemia Viruses in 86.5% of M.E/CFS patients was confirmed by the US agencies Food and Drug Administration and National Institutes of Health in August 2010.

The Department of Health has BANNED the donation of blood in M.E patients from 1st November –stating it “as precaution to protect the donor's safety by ensuring their condition is not made worse by donating blood" and that “there are no plans to screen already stored blood (Anne Milton Minister for Public Health, October 2010). THEY WILL NOT ADMIT IT IS BECAUSE OF AN INFECTIOUS RETROVIRUS.

WHY?

The current treatment guidelines for M.E were developed by a steering group dominated by psychiatrists, who state of M.E patients:

“Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and health service”.

Most M.E treatment centres are funded by mental health authorities within primary care trusts and placed within mental health units of hospitals and headed up by psychiatrists.

We are not mentally ill. We are sick.

Not only is XMRV prevalent in our blood, researchers have also found immune system abnormalities and EIGHT infectious subtypes of M.E. Antiviral trials have been a success in America yet these drugs are banned under the NICE Guidelines in the UK.

YOUR TIME IS NOW

The US NIH has recruited top pathogen hunter Dr Ian Lipkin to carry out further XMRV research.

The UK authorities state “no public health action is required at this time.”

It seems the UK Government is quite happy for this cancer-causing retrovirus to be infecting the blood supply; already it is estimated that between 3% and 7% of the healthy blood supply is infected and cancer has increased by 4% annually since 2008.

-.-.-.-.-.-.-.-.-.-.-.-

M.E/CFS patient community, sufferers, family members and friends - it’s time to join together once again and demand policy change in the UK!!

The “UK POLICY CHANGE: NOW” campaign has just four simple steps or AIMs and taking part in our campaign is easy:

1. Address your email
2. Inform the campaign: Bcc: ukpolicychange@gmail.com
3. Message: copy and paste our message
4. Start over: repeat these actions once each day.

Sample message: (adjust as necessary)

Dear …...,

"Stop allowing policy to support the refuted psychiatric model of ME/CFS, which presumes that ME/CFS has no organic basis and is therefore contradictory to current science and research on XMRV and other viruses. Pledge to make a definitive policy change NOW, patients and their families are waiting."

Jane Smith, Newcastle
Housebound and bed-bound since 1999

Send to:

1) Andrew Lansley, Secretary of State for Health
2) Sally Davies, Chief Medical Officer at the Department of Health
3) John Savill, Chief Executive of the MRC

Contact info:

1) Rt Hon. Andrew Lansley, Secretary of State for Health
Email: lansleya@parliament.uk, DHMail@dh.http://www.facebook.com/l/9485c9l4Zu6kl2QhJZ_JC2neFFg;gsi.gov.uk
Bcc: ukpolicychange@gmail.com
Telephone: 020 7210 4850 Fax: 020 7210 5952

2) Dame Sally Davies, Chief Medical Officer, Department of Health
Email: CMOweb@dh.http://www.facebook.com/l/9485cfhP94Jcp4WKxe6xtXjvfnQ;gsi.gov.uk, sally.davies@dh.http://www.facebook.com/l/9485c9l4Zu6kl2QhJZ_JC2neFFg;gsi.gov.uk
Bcc: ukpolicychange@gmail.com

3) Sir John Savill, Chief Executive of the Medical Research council
Email: Linda.Willmott@headoffice.http://www.facebook.com/l/9485cmiHPhfGKce-CXutRQBSfMw;mrc.ac.uk (personal assistant's name)
Bcc: ukpolicychange@gmail.com
Telephone: +44 (0)20 7670 5155
Fax: +44 (0)20 7580 4369

NB. Please use Bcc (instead of Cc) when copying us in and create your own subject titles. These actions should reduce the number of emails stopped by those pesky spam filters.

Many thanks
x

Day Fifty: Writing a bestseller?

Busy with writing today, and if I had even the slightest notion that I will be able to enter the TV3/Poolbeg competition, then I you won't

see me here again until Christmas... (which reminds me, don't forget to order your Christmas cards from the Little Wings Shop )

Anyway they're asking for a completed novel between 100.000 and 120.000 words before 17th December.

Just checked and I have about 6000 words... and a few thousand words elsewhere on the computer, and many many more in my head, but I don't think they count in this case

For those of you in Ireland who have been working on a novel a bit longer, here are the details:

• Write a Bestseller
• Imagine seeing your name on the bestseller list in 2011?
• If you've ever dreamt of being a published author now is your chance to make it happen. The Morning Show with Sybil & Martin have teamed up with Poolbeg Press, Ireland's leading publishing house, to offer you the prize of a lifetime -the chance to see your novel published and on bookshelves around the country.
• For more see: Article
• See here for an entry form

Bye now,

Back to work!

PS, a great website for writers in Ireland: http://creativewriting.ie/

Day forty-nine: Shadows

shadow of the 'people in my family tree'

It might be a strange notion, but I like shadows.

Shadows can create images at times more wonderful and interesting than it's original.

Take a plant in the windowsill at nighttime. Illuminated by a streetlight, the shadow on the wall takes on a completely new identity. Spidery- Spooky- Ready for Halloween

Walking in the low hanging autumn sun, my shadow is long. I am TALL! And my walking stick is not recognisable as a stick any longer.

(...may I divert a little, I was walking on a beach a while back and my shoes left an imprint in the wet sand. For some reason, my stick did not. This REALLY excited me! No stick!)

Anyway shadows. The shadows of the telephone poles over the field in this same autumn sun, stretch out to the end of the field.

Distortion. Beauty. Intrigue.

Last night I was sitting in my study, under a wall light. My Family Tree sculpture - on which I am still working- stands across the room. The shadows of the 'people' I see in the tree-stump were clearly visible on the wall.

I 'found' a new figure in it too - a dancer- only visible because of the shadow.

Day forty-eight: reality hits back

(I will let a few videos do the 'talking for today)

Last night after writing my musings about Facebook,

I felt good. Happy. Contented.

As usual I created a link to Facebook and Twitter.

On Facebook I had a quick check to see what others had posted...

Sus had just posted this video:

Here is my own story about M.E. (in two parts)

Filmed and edited by Irish Artist David Begley

in 2003:

Fit to Fly

(note that the first video starts with a black screen for ten seconds.)

for those of you still looking for more 'entertainment'

here is the link to the documentary Flight Path accompanying my book Hatched.

A story of triumph, picking up my 'baby' from the printers

Thank you for taking the time to watch, and please do forward any of the video's to bring more awareness to the condition M.E. which brings huge devastating to so many people.

Day forty-seven: musing

Time for some musings. Strange word actually... musings:

absorbed in thought/ meditative/ contemplation/reflection

My 'musings' were going to the strange and wonderful world of Facebook, Second Life, Twitter, ... Blogging

There I have said it, I am enjoying Facebook... and blogging... although I still don't really understand Twitter. But thank you my followers!

Those of you who have been following my blog for a while, might remember that I did a small survey on the effects of social networks for people with M.E. At that time I had only just succumbed, reluctantly I must add, to Facebook and had a blogger page because I trusted my friend Shannon's suggestion of this.

Forty-seven days ago, I started writing an almost daily blog, partly (to convince myself) of a change for the better in my health, and partly to share with others my love for writing and life around me.

Every time I write I create link to Facebook and Twitter. Suddenly I have people all over the world, whom I've never met, and probably never will, reading my thoughts, sharing my pain, and delight in the small triumphs.

I am in awe of all the kindness you, my readers, my friends, are bringing me.

Cyberspace is where I have met the most wonderful of people, some living with the same condition as me, others who share a love of books, or creativity. All add something to my life. There are young people and people older than me. Age doesn't matter, race, state of health, country of origin, none matters. On Facebook.. and I am sure also on Twitter, we are equal.

If you can run a marathon and I can walk to a little up the path to Ballynelligan, we are both equal in cyberspace.

What a joy is has been to share funny video's, small anecdotes of life around us, the joy of growing vegetables, of watching the birds, of given someone who has a bad day, a virtual hug. To chat with someone in Australia, in Ireland, or young teenager who loved my Cirrus book.

Why oh why did I not want to see this at first. I was very much against Facebook... I didn't want to know what one had or breakfast or if someone had brushed his or her teeth that morning... Little did I know that I would be excited to check up on my friends in the morning, see what they've been up to and to read the lovely comments from 'virtual strangers' - no they are 'virtual- real friends'! I remember even a photograph of what one of my friends had for breakfast... A great image.

I rest my case, and will muse a little further on my own.

Goodnight my friends.