I am sitting here at the computer, and have the feeling that my body has been taken over by Aliens. Did they arrive with the Christmas presents? Where they, or it, wrapped in the pain that knocked me out about 10 days ago?
According "Dictionary.com" an alien is:
a resident born in, or belonging to another country,
who has not acquired citizenship by naturalization
A citizen from the world of pain? The world of M.E.?
I am in a daze, sleep between 12 and 14 hours at night, and then still require a rest in the afternoon. My legs are worryingly weak. The Alien in my head makes conversations difficult. I can not find the words to describe a thing or an action. Writing seems a little easier although the job is laboursome. (& spellcheck essential!)
So why write?
Because in this Zombie/Alien state, my creative brain is making a comeback. It wants attention, and comes up with ideas for the year ahead.
Over the past few days a handmade artist book has been formulation in my mind, and I have played around with its possibilities. Exciting! Watch this space.
Yet again, I see creativity as a way forward. The first benefit is selfishly mine. I can experience my world through words and images. Words I am not always able to speak, but do flow out of my fountain pen, or through my fingers on the keyboard. My camera has me observing the birds and trace the life of plants, flowers, and insects. Creativity is the one gift from the world of 'Aliens' which I truly respect and have immense gratitude for.
It is also a way in which I can communicate my thoughts, fears, loves, and desires with others, and if these creative explorations have a positive effect on others, I am honoured.
Through the Alien's visit I also became aware again that I am not able to take part in the world like a citizen of the world we know. I enjoyed a few 'normal' outings over the past few months and am still paying for the 'privilege'.
This realization is painful. The fear of having to live my life forever in this way makes me sad. It can be so lonesome at times. Yet! Most of the time I value my space, the silence in my house, the time I can devote to my creativity. As long as I can construct a healthy balance between the much needed social contacts and the life I can live. The life I can live well. The restrictions are many, but managed well, I do experience my life as a good life.
Creativity being the main key to my well being, these are my wishes for the year ahead:
I hope to finish writing my novella: "The Shadows of an Invisible Octopus", work with my artist friend Spark on the Family Tree project, and unearth more about my ancestors, especially my Great Grand Mother Maria. I believe that in this lies a key to my writing.
I aspire to republish Hatched and create limited editions handmade artist books, and to get my hands dirty with clay again.
A lot? Maybe, but I have 365 days and more to do it. No rush!
All this does means though that I doubt I will devote as much time and energy on networking on Facebook. I'll pop by now and then to see how my Facebook Friends are all doing. (*)
The Alien's visit had me re-evaluate how I spend my time and energy. Computer time- I have to use more selfishly- creatively; jobs in the house (for which I am going to apply for more support again) and use my energy the way I know is best as long as the Aliens are in the vicinity to make it's present known.
Maybe this is all a way of sticking my head in the sand, live a life in a dream state, not in the real world, but then again, maybe deep down I know to which "country" I belong and can aspire to live there within my best abilities.
If you like to keep track of my creative explorations, please sign up by clicking on the button "follow". And if you have a blog or website of your own, please let me know!
Best wishes to all my readers for the year ahead.
Health and Contentment and hopefully a lot of creativity!
Cirrus woke up all cosy from sleeping with Robert Cat in his box under the bed. Cirrus stretched out and looked up towards the window sill, to talk to Zebra.
“We had better practice a bit of flying today.” Grinning from ear to ear he continued, “I am SURE Cloud Nine will be above Ballynelligan soon! Then I can go home, and tell EVERYBODY about my adventures!”
“Can I really fly?” Zebra said a little confused. “I thought I’d been dreaming.”
“Don’t you remember? We were flying around the tree last night. It was AWESOME!”
Cirrus suggested practicing by visiting his friends, and recited the words the Fairies had taught him. They flew out the open window, through the garden, over the high stone wall, towards Ballynelligan cottage.
Sarah Robin nearly fell off her perch when she saw Cirrus and Zebra flying by.
“My goodness, look at you!”Having recovered her composure, she added, “so when are you going home?”
“Well, we need more practice today, so I’d say tomorrow.” Zebra nodded in agreement. “And the Fairies kept talking about Christmas and a Santa Man, who is visiting tonight. I’d really should stay around for
“Well Cirrus, I know e-v-e-r-y-t-h-i-n-gabout Christmas!” Sarah boasted.
“Oh, sure, I remember now. Stephen Wren told me.”
Not listening to Cirrus, Sarah continued, “you know, Christmas was once about the birth of Jesus, but now humans only talk about presents and Santa Claus! AND”, she added, pointing to her red breast, “they have also forgotten that a robin took a thorn from Jesus’s crown. It was his blood that coloured our breast red!” Taking in a deep breath, she went on, “oh yes, before I forget, about 150 years ago, humans started to send Christmas cards to each other. Of course OUR picture is on most of those!”
“You are famous aren’t you?”
“You are right, I am! Come to think of it, Christmas is all about robins and the colour red! Even Santa wears a red suit!”
“So, who is this Santa Man?” Cirrus asked.
“I’ll tell you now. Santa Claus, and Mrs. Claus, live in the far north, in a land where there is always snow. There, with the help of lots of Elves, he makes toys for children all over the world.” She gave a deep sigh, “and then on Christmas Eve, which is tonight, he comes down in his sleigh pulled by nine reindeer. It is truly amazing to see the sleigh land on the roof, and to see Santa climb out and disappear down the chimney.” Shaking her head, she added, “he is a big man you know...”
Cirrus, thinking hard, asked, “but how does he come out again? Doesn’t he get stuck? Does his suit get all black?”
“I know it is amazing, but true. I have seen it with my own eyes. Santa goes down the chimney with a sack of toys, eats a biscuit, and drinks the glass of milk that has been left out for him. Then before you know it, he is up and out of the chimney; clean as a whistle, and on his merry way.”
“I certainly stay up for THAT tonight!” said Cirrus.
Last Saturday I started writing a blog about the TRUE meaning of Christmas and what Christmas means to me, in memories, thoughts and wishes.
I turned into a long-ish piece and suddenly felt too ill to finish it. I went down hill in lots of ways. Pain "knocked me for six" (what a peculiar expression...) Anyway, I had to go to bed- and stay there. I felt cheated out of Christmas. I wanted to decorate my house some bit, I still had letters to write (Kirsten it's coming).
This bloody illness really got me this time.
But I have friends!
In tears of pain and fear, I rang my friend Phyllis. She shared my physical and mental pain, and later prayed for me with her friend Margaret Anne. The following day Phyllis came to visit and has been in touch every day. Thank you my dear friend.
Mariela kept me fed and watered, Jane gave me a loan of her spare bed and warm house on Monday as I had someone putting insulation in my attic. My house has been too cold for too long, at last something was done to remedy the problem. (I bought a stove and insulation and council were going to put it in). Thank you all.
A long chat with Spark helped me to see that I was very low. Looking back on the year we wondered why life had to be so hard at times. I started to feel better by the end of our chat.
Tuesday morning I woke up early. Opening the bedroom blind I was greeted with the most beautiful star in the sky. A huge bright star, which made me think about the image of the "Christmas Star".
I turned on the radio and heard that the eclipse of the moon was happening right now!
I wrapped up like the "man on the moon" and went outside with my camera.
I felt so privileged that I had seen both that star and the eclipse on this winter solstice morning.
Christmas was here and I was going to make it a good one.
Time, painkillers and other 'drugs' were helping me to get out of bed again and to start thinking about Christmas.
I must admit that I wasted lots of energy to try to have the council to place my new stove - before Christmas, so I could be WARM, and with the worry and inconvenience of not having water for two days.
Yesterday friends Marcus and Joan came to visit. Joan for tea and chocolate, Marcus to (temporarily) put the stove in for me. He worked hard, drove around to get flu pipes. Flexi-flu I now know it is called. He managed to put the stove in, without the proper flu-pipe. Excitedly Joan went outside to see if smoke rose from the chimney. It did! But opening the stove's door, the room filled with smoke...
Last night, happy that at least the stove was in it's rightful place, I decided to just put a candle in/on it for now and wait until council-plumber has time to put it in properly... I gave up the fight and wheeled an electric radiator into the room and created my 'Alternative Tree'.
Creativity is a great healer.
It was the turn of my room to be in a mess- I felt better.
Today... still no water.. and lets be honest - I needed a shower/bath... Jane came to the rescue again. After the 'water- visit' I was brought home, clean- and even with a load of clean laundry by her son Dan.
Lucky me! As Dan knew how to temporarily make my stove work.
So, my Christmas story that came to light was a very different story from the one I started to write almost a week ago.
Today, I feel so blessed to have friends, who are there for me when I need them, who sort out issues I cannot fix on my own, and who share their love and wisdom with me.
To top it all, even my water miraculously came back to the house.
Maybe fighting to hard to get things 'sorted' stopped them all from happening.
a little decoration in my study
My friends, here, there, and in cyberspace,
I wish you all a wonderful Christmas with friends and loved ones.
If you are alone on the day, I am sure that there will be people who will have you in their hearts. You will be in mine.
Thank you for your friendship and I look forward to spend more time with you
and get to know you better in the year ahead.
And of course, best wishes for Health and Contentment
A few days ago my very special friend Paddy Vaughan passed away. He was 87 years old.
I will miss him dearly.
Passing by his house during the walk from the church to the graveyard, I realized I will never have the pleasure of spending time with this remarkable man in his 'organised cluttered' house.
Paddy was a writer, a teller of stories, a local historian, a reader of poetry, a friend to many, a man with a lovely twinkle in his eyes and the most wonderful eyebrows! A man who loved life and his town of Lismore.
Paddy was born in Lismore opposite the church. Behind the house is the forge belonging to his father- Paddy worked there too and was the last remaining blacksmith in town. His own house was a few doors further. The cemetery another few hundred yards away. His life was fully lived in the one street: Chapel Street.
In 1994, Paddy published his first book: The last Forge in Lismore. A story about his work in the forge- the people he met and a wonderful portrayal of a thriving business town.
For the past few years he has been working on the sequel: stories and memories about Chapel Street, the people who lived there and the changing social structures of modern Ireland. I can only hope that it was near completion and that the book can be/ will be published.
The forge is still in existence- although in need of some tidying up... A museum in the making?
We first met - according to Paddy- at an exhibition I had in the Library in 2004. An exhibition of art, poetry and the launch of the Fit to Fly Documentary. There were a lot of people there, I was still very much in the throws of M.E. and was in love... To my shame, I don't remember meeting Paddy.
While minding Lismore Gallery in the summer of 2008 Paddy came in and we started to talk about the history of the building. I very much enjoyed talking to him and we decided to meet up again. We did. Many, many times.
We talked about books, about writing, about life in the past, and life as it is now.
Paddy told me the history & stories associated with Ballynelligan while I was writing the Cirrus Chronicles- Landing in Ballynelligan.
I am proud to say that Paddy helped me launch this very book in November 2009. He started the night with words in Irish. A true Proud Irishman!
While working on the next story for the Chronicles- we shared a common interest: the life of Ms. Fanny Currey. Fanny Currey was an artist- writer- and owner of a Daffodil nursery in the 1880. My house is build on the land once used for the nursery. Her book was called : Prince Ritto (1887) illustrated by another Lismore artist, ms Helen O'Hara. ( I managed to get a photocopied edition from the National Library in the UK)
Paddy wasn't aware of Fanny Currey's writing... But... he had information that I didn't have! Every time we met this came up for "discussion". I can see Paddy's face: a big big smile and twinkling eyes.
We promised that whomever would be the first to publish our book would mention the other.
I am sad to say that it will be me who has "won" this game.
During the funeral mass his school pal, a priest for the past 60 years, told us about Paddy. Great memories were told, and lots of laughter heard in the (cold) church.
I am honoured to have had Paddy among my friends, and am honoured that I was invited, among many others, to the dinner after the funeral. I had the opportunity to be among his friends and family.
Rest in peace my dear friend.
a sample his very recent writing, given to me by his grand daughter Mary-Ann
First of all, a warm welcome to my new friends/followers on this Little Wings Blog
It's cold today. Bitterly cold. But as it just started to snow again, it makes for an almost perfect world... (as long as I stay here in my study where the radiator is sending out warm hugs around my legs.) The sky full of snow is blocking out the view of the mountain. The view nearby makes up for it: birds are frequenting my garden.
On Sunday- on our way back from the Christmas Market, the sky was a clear beautiful shade of blue- almost turquoise. The mountain had streaks of snow on it. Seeing this view alone made it worthwhile to have gone to the market.
Sunday morning I went out to take some photos of my snowy surroundings. Once again I am enthralled by the shadows that were created. Distortion and clarity at the same time.
Shadows is also the theme of my current writing, which I hope to share with you someday.
"Shadows of an Invisible Octopus"
What I love most about writing is that even when I have a very clear idea about what I am going to write, the minute my fingers hit the keyboard, or my pen's ink flows over the paper, the story makes an unexpected detour. Unexpected and yet it makes perfect sense.
The story started out as Noa's fictional autobiography- I suppose the fictional element gave me the freedom to 'play with words'. But as shadows were seeking more and more of my attention, I ended up rewriting the part that I had written. The story is now semi-autobiographical with lots of fiction in between the lines.
In the second part of the book, the shadow is revealing it's identity. Yesterday the shadow hooked up with a character who called himself 'Malious the Great'. Shortly after they met, they became rivals. I was utterly surprised and yet it makes sense. My life with and without M.E. made more sense. Distortion and clarity at the same time.
I look forward to more revelations, so will let my fingers play on the keyboard later on!
First... have to rescue hot chili peppers from my now not so warm greenhouse...
If you like this theme, you might be interested in this post shadows
Yesterday I received a comment from Sue to a post on Facebook,
.'..I don't need to nag you about not overdoing it do I???!!! '
'I echo Sue's nagging . We have to take care of each other... '(Di)
This was echoed by more people today
This morning I woke up with Sue's "nagging" beating in my head.
They are right. Of course.
It is important not to overdo it, especially when energy is at a premium.
The "nag" brought me back to my early years with M.E., and to the arrival of my first computer.
At the time, I could only be on the computer for about 20 minutes a day. Sometimes impatient to see if anyone had responded to an email (esp when I put an add on a dating site... that's a different story all together...) I had to stop myself from turning the computer on for a second time that day.
To stop myself I hang a note on the screen:
I did stop and think about what I was about to do.
I made more of these notes.
One was stuck on the mirror in the hall. I would see it many times a day and especially when I had the absolute need to escape the house. I had to be SURE that I really had sufficient energy to put on my coat- shoes etc. and that I after that could walk a few minutes outside.
( All the effort to get dressed rarely made for a satisfactory outcome, as of course I wanted to go further than the corner. I wanted to escape. Escape M.E. Escape me.... )
So I had to be sure, and had to stop and think if my intended action was needed, if it would be a good use of energy- could 'it' be done by someone else, can 'it' wait, what is the alternative, etc etc.
Having just 'recovered' from my recent bad spell, I have to ask these questions again.
Is it absolutely vital that I make more Christmas cards for the Market tomorrow.
No it isn't.
Is going to the market needed?
Questionable- but I do know that I meet up with friends from a part of my life when I used to organise these kind of fairs. It is good to have contact with that part of my life, even if it is only once a year. If it is that important, I need to calculate a day of rest before and after the event. I will put the plan in action.
So, yes, I am sure that going to the market is a good use of energy.
For other more immediate questions, I have my trusted timer. I bring it with me. Like in the picture I brought it into the greenhouse. Now it is ticking away on my desk. I have 5 minutes left on the clock, so better finish this blog.
Ps Of course, The Are you SURE note is not just for people with M.E. It is also valuable for people who have their feet in the 'real' world. Are you sure that they need to do overtime? Are you sure you need that new coat? Are you sure you need to change your car? Are you sure you have to go out to the pub? Are you sure that you don't have time to chat with your kids...
See you soon my friends!
And last but not least- thank you again my friends for your company and support!!!
I've decided to make my slow return to the world of blogging, after an almost complete absence from cyberspace for nearly two weeks. My double life caught up with me during the last month, I had to take a break.
During the break- with was accompanied by extreme exhaustion and pain- I have been thinking - as one does when not busy. Thinking friends- friends I can see in the flesh- friends I mainly talk to one the phone, as they live in other countries- and friends I made on Facebook and here through my blog.
Why is it that when one makes friends on Facebook, one feels almost compelled to let them now why I will be 'going into a cave for a while'. Many of my 'flesh' & 'phone' friends don't know I have been unwell and that I have been in 'hiding'. I don't communicate with them every day.
Yet the fact that I DID communicate with my Facebook friends, with YOU, brought me lots of support during my time of recovery. I would like to thank you all for this. Your messages appeared in my email-box and, especially during the first few days, brought me to tears. Tears about worsening symptoms, but mainly tears of gratitude for such amazing supports in a few words and images. Again, thank you!
But, there is a but. When I did click on one of the messages in my email-box, my body/mind seems to be going into 'fear' mode. While the box came up asking for my password, I felt my body stiffening- I experienced a fear of being faced by so much information all together on the one page. I couldn't deal with, and still have difficulties with- an overload of information. Energy is a precious commodity.
But the longer I stayed away - the more there was to catch up with- so many friends. (But is this real? I communicate with my 'flesh' & 'phone' friends every so often and we'd fill in on each other's news. Facebook is such a different form of contact - isn't it?) My fear that I would feel worse again after being on Facebook was real, I wanting to save my energy for recovery and writing.
What I decided on, was to say a quick thank you and leave.
Does this 'fear' make sense? I found a word for it- Editiovultus phobia (derived from the Latin words meaning "face" and "book" see uncyclopedia Editiovultus phobia)
I felt the responsible to keep up with others. Yet I miss being in contact with the friends I made. You know who I mean. Those Facebook friends whom I count as my real friends now. Friends that I might never see in the flesh- unfortunatally- but who are very important to me. I think about you, wonder how you are doing, and feel that I am not a good friend if I don't respond to your messages. I know you understand- many of you probably feel the same as many of you are also living with M.E.
That brings me to my other facebook-related-fear, my Editiovultus phobia. Talking about M.E.
Being friends with people who deal with the same illness as me, can be such a relief, as you understand what I am going through- as I understand you. Yet- now I am faced with worsening of symptoms again- all I want is to get away from reading about M.E. and get on with my life. M.E. is in my life- but I like to think that M.E is not my life. - If you know what I mean... This does not mean I want to stop having contact with you! Love you too much for who you are!
As far as I can make out, some of you on Facebook have come to the same conclusion and have started another page where the illness can be discussed. Good on you! For now, I am not ready to face that page until I have regained my 'balance' again.
So, where will I go from here?
Today I think that I will continue with writing a blog when I feel like it.
Maybe you- my facebook and twitter followers who visit this blog on a regular basis, might sign up to the "Follow button", and in this way, you can read my musings, and we can stay in touch.
I find the Blog less overwhelming than Facebook right now. It is one page and the comments left by you are easier to answer. I love reading your comments here!
In terms of Facebook- I might pop by every few days for a quick look, but for now I will keep my time there limited. Maybe in weekends, when I don't seem to do much writing- is a good time to catch up with you there. You are all in my heart! And don't want to loose contact!
Thank you all for your support and understanding, and I hope that you are as well as can be. Wishing you all a lovely Sunday!
I don't think I am regarded as a pessimist... yet right now I am wondering if I should stop counting my 'days of musings' - and just write when I feel like it, yet the count helped me to see how far I got, and I enjoy sharing my daily thoughts with you.
I reached day 62, with a few hick ups along the way, but I was on a roll. A roll down a slippery path perhaps? Or maybe I slid down a frosty path this morning...
In any case, I sign defeat of M.E. Again. For now.
I will rest and come back stronger.
That is usually the way.
Pain and exhaustion has been building for weeks, but I had 'things to do', 'people to meet', in real life and meeting up with my dear Facebook palls. I learn from them, I laugh and cry with them.
To regain my stamina and get back to my social life, I will hide in my cave for a little while, and there I'll decide how to go further.
Maybe being on Facebook, and writing a daily blog, and working on a story, on top of life, might have been too much.
All I know is that I am in a lot of pain, and am sad because of it. Defeated. Exhausted.
Talking to my GP I said, "If anyone tell me that 'it' (M.E.) is all in my head, I'll tell them that what really is in my head, is the story I long to write- but can't."
Thank god she believes M.E. and Fibro are very real illnesses. She knows me.
Nurturing my tired body in the bath, I was thinking about today's blog. About how I've met The Bull (M.E.) again and the need to rethink how 'we' can continue our walk to the fence of recovery, and about the recent blog/facebook discussion for the need to highlight M.E....
But post had arrived and there was a letter for me.
My blog-subject changed the very second I opened the letter.
Let me start from the start.
The town of Lismore has a weekly Alphabet Lotto to raise funds for community projects, like the creation of the Millennium Park, and the setting up of the Farmers Market, to name but a few.
When I am in the Credit Union, I buy a ticket. My four letters are (in alphabetical order) I.N.O.W. which if you play with the position of the letters would read I WON. I always thought this to be a brilliant headline in the paper: Corina Duyn predicted a win in the Mochuda Lotto, with the letters I WON.
Last Tuesday I was convinced I was going to get that phone call with the wonderful news of being the winner.
I sat in my study, and had brought the phone with me, just in case...
The phone rang.
The caller i.d. showed a local number.
It was a friend, who's number I had not yet stored in my phone's memory.
Yesterday I was in the Credit Union. I bought a ticket for next weeks draw and told them the story. Oh well, maybe next time.
The letter I received today had a cheque in it.
No, not for the jackpot, but one for the €15 consolation price.
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.
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.
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.
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: firstname.lastname@example.org 3. Message: copy and paste our message 4. Start over: repeat these actions once each day.
Sample message: (adjust as necessary)
"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
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
1) Rt Hon. Andrew Lansley, Secretary of State for Health Email: email@example.com, DHMail@dh.http://www.facebook.com/l/9485c9l4Zu6kl2QhJZ_JC2neFFg;gsi.gov.uk Bcc: firstname.lastname@example.org 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, email@example.com://www.facebook.com/l/9485c9l4Zu6kl2QhJZ_JC2neFFg;gsi.gov.uk Bcc: firstname.lastname@example.org
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