ME Awareness Materials

Share our Fb photo with attached links of ways to donate
and raise awareness

First posted for ME Awareness Month in May, the good news is there's now a range of easy ways for you to raise awareness all year round of Myalgic Encephalomyelitis - all far easier than spelling it!

In previous posts we've highlighted our Standard and Designer Spreadshirt shops and Carmel's ME Awareness shops. They each provide a wide range of awareness items and all funds generated go directly to Invest in ME and biomedical ME research in Norwich. But there are many more ways to raise awareness if you aren't in the market for a new t-shirt, teddy or mug.

LDIFME Leaflets

Print-off our leaflets and hand them out to friends and family, to your GP or consultant or to local journalists - along with some details of your story if possible. Our leaflets give a simple explanation of our campaign and list ways your friends and relatives can get involved including raising funds for free whenever they shop online. Giles Meehan's video explanation of our campaign is also a good way of getting relatives, friends, medical professionals, or maybe your MP up-to-speed.

Badges

Our badges come in packs of 5 with £1 raised for biomedical research. Badges can be re-sold with profits going to Invest in ME or given away to raise awareness. Pin them to a coat, bag or briefcase to raise awareness on the go or give them as a gift to friends and relatives to wear to highlight our cause.

Invest in ME Posters

The BIG CAUSE slogan is used to emphasise the great need for proper research into this disease - something that has been lacking in any government strategy over the years. IiME International Biomedical Research Conference leaflets and Burst Our Bubble campaign posters are also available and IiME can provide ME Awareness support packs.

Various ME Awareness Posters

We have seven poster designs available that have been created in support of Let's do it for ME and Invest in ME charity by members of the Let's do it for ME planning group. All of which are free to save, share and print for awareness raising purposes. With thanks to all those involved in the making of these posters, and to those who feature in them and have given permission for the use of photos. Take your pick and put them up in your hallway or window, your doctor's waiting room or local library - seek permission first where necessary.

www.thebigsleepforme.com

The Big Sleep for ME

Julia Cottam's Big Sleep awareness and fundraising event is all about inclusivity and there are different degrees to which you can get involved depending on your ability level and available free time. The 'lightest' option is as simple as it gets TEXT BSME99 and the amount you wish to donate, for example BSME99 £5, to 70070. Then smugly put your feet up and do nothing for as long as you wish in the comfort of knowing you are doing it for charity and supporting people with ME and biomedical ME research!

Wrist Bands

Blue "www.investinme.org - Support Biomedical Research into ME" wrist bands are available in packs of 5 from Invest in ME. We also have a wide selection of other awareness bands and bracelets available from Make ME Crafts a website set up to sell crafts in support of LDIFME and Invest in ME. Whether it's paracord or pearls that float your boat wear them with pride and sell them to friends, family, work colleagues - even in your local library, GP surgery or hospital.

Bumper Stickers

Buy yourself, your friends or family one of these awareness raising car bumper stickers to highlight the need for biomedical ME research all year round, versions are also available with Invest in ME's details on.

Voices from the Shadows

DVDs of the award winning documentary film Voices from the Shadows are available at a minimum cost for individuals to buy for themselves, their friends and family and to give to professionals to view privately. Copies are also available with public performance rights - i.e. for use in libraries, screening at conferences, use within an educational institution, training sessions for professionals, screenings for ME groups etc. both from the VftS Shop. The film can also be watched worldwide online at MUBI

Lost Voices

Voices from the Shadows film developed from Lost Voices a book available from Invest in ME that contains stories and photographs from people with severe ME and their families and carers. Art has the power to move people, and combined with documentation Lost Voices brings the situation more vividly to life.

And of course you can always point people towards this site or share this post via email, twitter or Facebook. Or maybe even Pin some of our pictures if you've joined the virtual pinboard site Pinterest - all of these sharing options are available from the 'Share It' gadget directly under the blue Donate button at the top of the right side bar  ---> 

However you decide to raise awareness this year - Let's do it for ME!

ME Awareness Month - no wait - come back!

The following is from a letter written by Geoff Allen, edited and contributed to by Jane Hurst and emailed to their friends during May Awareness Month, with kind permission to repost.

Hello dear friend,

As you may or may not be aware, May is ME awareness month. In the main I think only ME people seem to be aware of ME awareness month, therefore I thought I'd spread the word a little (if that's ok). Normally I let this event pass without really marking it apart from posting a few things on my Facebook page but this is different for a number of reasons. Firstly a fab article appeared in the Daily Mail on 11th May and I just had to share it with you. There have been many damaging and misleading articles written by lazy and ill-informed journalists over the years, and as you can imagine, these have been hugely distressing to read. And very difficult to counter, too, of course. But Sonia Poulton's article in the Mail is a revelation. I've been waiting for an article like this to appear for the last 10 years! It's brilliant. She understands the numerous problems people with ME encounter, not just with the illness, but also with the way so many ME sufferers are mistreated by the medical profession, and how the illness is badly misunderstood by the general public. So, it's great to see an article that attempts to set the record straight and explodes most of the myths and misperceptions about ME. I know you're all enormously busy and have full and hectic lives, but if you could find the time to read it, I would be so grateful. It would mean a lot to me if you did. I'm sure most of you already have a good understanding of the majority of the problems already but it would still be great if you could read it and perhaps pass the link on to friends and associates. And, should anyone ever question the fact that ME is a physical condition, perhaps you could show them this article. I'll even print out some copies for you if you like! 

One of the other great things about this article is that it mentions a film called 'Voices from the Shadows' which was made by an ME friend's family and features little old me. Well, old me anyway. Har Ha. I'm only in a couple of shots but I absolutely steal the film with my boyish good looks and charismatic screen presence. It also features my good friend Naomi who has been mistreated terribly by the medical profession since she became ill aged 12 (she's 35 now). I've not seen the film (can't watch DVDs unfortunately) but I'm assured it's very good and demonstrates the mistreatment and downright abuse some sufferers have been subjected to. It won an audience favourite award when screened at the recent Mill Valley Film Festival in America too. The film was made principally to send to medical professionals and journalists to try and counter the misinformation (and damn right lies) about ME that remain in the public domain. And in the case of Sonia Poulton (my heroine!) it has achieved its aim. She didn't believe ME existed and seeing the film has changed her opinion. Brilliant. The film recently came out on DVD and I have bought several copies in the hope that lots of people will watch it. It's quite a tough sell tho esp when I know I'm preaching to the converted in all your cases. But I still would be so grateful if you could watch it as it is such a powerful piece of work, not only is it very informative, but most importantly it highlights the reality of this wretched illness. It's only an hour long but obviously I'd be so chuffed if you could find the time to watch it and then help spread awareness of the terrible plight of ME sufferers - especially the long term severely affected like myself and Naomi (& my many other severely affected ME friends. And there in lies the problem. The prognosis for the severely affected is not good. Most ME sufferers improve a bit over time but, despite what most people think, ME is incurable. If you hear of people in the press making a miraculous recovery, especially using one of these controversial psychological techniques, the chances are they didn't have proper neurological ME to begin with. As it stands at the moment ME's a life sentence. This will not change unless research is carried out. That's the huge problem we face. (Btw there are so many other problems with ME too but I won't go on about them now!). As I said, the main problem is a chronic lack of research funds, coupled with the fact that the medical community isn't very interested in tackling ME unfortunately. The illness is just too complicated and the situation will never really improve until there's a massive injection of money into research which we hope will then lead to a major research breakthrough - like a diagnostic test for example. That would make a huge difference.

Shockingly, there's still no dedicated research centre for ME either (unlike all the other major illnesses). It's completely unacceptable. How can things ever change for us when so little research is being carried out? As a result, there's still no bespoke treatment for ME. It's the illness with the largest number of sufferers not to have a dedicated bespoke drug. There are drugs available to try, but they are all for illness management rather than treating the root cause of the disease. Also a lot of the drugs that may help aren't licensed for treating ME so it's almost impossible to get them prescribed. Its a nightmare! We need more trials but there's just precious little research going on at the moment. And also the severely affected ME sufferer, like myself and many of my friends, are almost never included in the trials so that's a problem too especially as we're the ones who need the most help. It's all rather tough to take especially when you've been ill for so long and are dealing with frightening and often very painful symptoms day after day, and the situation just isn't changing for the better. However, I hope this article by Sonia together with the Voices film will prove to be a watershed for people with ME. That's my sincere hope anyway and that's one of the reasons I'm sending this email to you. This film is so important and we just need as many people as possible to see it. Awareness can bring about change. It could also mean we get our lives back. It gives us hope at least, which is SO important when living with a chronic illness. (I said I wouldn't go on about it but I did. Sorry. It's so difficult to hold back sometimes! I'm sure you understand).

Geoff Allen

Thanks so much for reading this. I really appreciate it. I'm sure you've got enough problems of your own without me banging on about ME. Promise I won't mention it again. Well not a few weeks anyway. Ha. Hope you're all ok and life is treating you well.

Much love to you and all your family, pets etc. And thanks again for reading. Speak soon.

Lots of love
Geoffrey

Jane Hurst

 

RIP Emily Collingridge - Emily's Appeal

Rest in Peace Emily Rose

We would like to extend our deepest sympathy to the family and loved ones of Emily Rose Collingridge, who very sadly passed away on Sunday 18th March, aged 30.  This picture is by kind permission of Emily's friend, Kathryn Davy.

Her mother, Jane, has asked for Emily's Appeal to be reposted.  Emily tapped these words into the keyboard of her smartphone over the course of many weeks during 2010-2011, while she still had the strength in her body to do so.

Emily's Appeal (written 2010-2011)

It has been said that the following is hard to read, but that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.

My name is Emily. I developed the neurological condition Myalgic

Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned

30. I still have ME.

ME coloured every aspect of my childhood; it painfully restricted my

teens and it completely destroyed my twenties. Now, as I move into the

next decade of my life, I am more crippled than ever by this horrific

disease.

My doctors tell me that I have been pushed to the greatest extremes of

suffering that illness can ever push a person. I have come very close

to dying on more than one occasion. If you met me you may well think I

was about to die now - it's like that every single day. After all

these years I still struggle to understand how it's possible to feel

so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme.

Voices wafting up from downstairs, a brief doctor's visit, a little

light, all can leave me with surging pain, on the verge of vomiting,

struggling with each breath and feeling I'll go mad with the

suffering. Of course it can also be as bad as this for no particular

reason - and often is. I cannot be washed, cannot raise my head,

cannot have company, cannot be lifted from bed, cannot look out of the

window, cannot be touched, cannot watch television or listen to music

- the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with

injections, needle changes (for a syringe driver), nappy changes (as

well as experiencing transient paralysis and at times being blind and

mute, I am doubly incontinent) and medicines/fluid being pumped into

my stomach through a tube. My life could be better if I had a Hickman

line (line which goes into a major vein and sits in the heart) for IV

drugs and fluids, but such a thing would likely kill me. I'm on a huge

cocktail of strong medications which help, yet still most days the

suffering is incomprehensible. During the worst hours I may go without

the extra morphine I need as I feel so ill that the thought of my

mother coming near to administer it is intolerable - this despite pain

levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our

hospitals have shown such lack of consideration for the special needs

of patients like me that time spent in hospital is torture (eased only

by the incredible kindness shown by some nurses and doctors) and

invariably causes further deterioration.

Many days I feel utter despair.

But, unlike some sufferers, over the long years in which I've had

severe ME (the illness began mildly and has taken a progressive

course) I have at least had periods of respite from the absolute worst

of it. During those periods I was still very ill, but it was possible

to enjoy something of life. So in these dark days I know there is a

real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for,

however, currently hinges on luck alone. This is wrong. As I lie here,

wishing and hoping and simply trying to survive, I (and the thousands

like me - severe ME is not rare) should at least have the comfort of

knowing that there are many, many well-funded scientists and doctors

who are pulling out all the stops in the quest to find a treatment

which may restore my health and that the NHS is doing all possible to

care for me as I need to be cared for - but I don't. This wretched,

ugly disease is made all the more so through the scandalous lack of

research into its most severe form and the lack of necessary,

appropriate support for those suffering from it. This is something

that must change.

And that is why I tell my story; why I fight my painfully debilitated

body to type this out on a smartphone one difficult sentence at a time

and to make my appeal to governments, funders, medical experts and

others:

Please put an end to the abandonment of people with severe ME and give

us all real reason to hope."

By Emily Collingridge 2010-2011

When news of Emily's passing broke, IiME Charity commented on their Facebook group:

“This is a very sad day and our condolences go to Emily's family. Emily contributed to Lost Voices and her story was one of the most severe of all. This truly sad event emphasises the need for a strategy of biomedical research into ME and proper education of healthcare staff about this disease.”

Emily was a much-loved friend of some members of our team and, as ME sufferers ourselves, we are playing our role in helping to bring about the change that Emily appealed for by running this campaign, as we believe that Invest in ME's proposal for the first UK Centre for translational biomedical ME research is our best hope of achieving a better understanding of the underlying disease process of myalgic encephalomyelitis and translating that to treatment as rapidly as possible, for the many thousands of sufferers of severe ME of all ages across the UK, and together with opportunities for education and training for healthcare professionals. Sadly, this will be too late for Emily and all those already lost to the ravages of this disease, and our hearts go out to Emily's friends and loved ones.  Please help Invest in ME to help us.   

Thank you for your support.

Team "Let's do it for ME"

*Lost Voices is available from Invest in ME.

*Voices from the Shadows is a film which developed from Lost Voices.

*New ME Awareness Posters - painstakingly designed over a period of months by a sufferer of severe ME and featuring some fellow members of our team. We are currently awaiting confirmation from a company regarding help with printing and distribution, but in the meantime, they may be printed off to raise awareness and funds for Invest in ME charity.

*ME International Consensus Criteria (short version with link to full version)

*Emily was the author of the highly-regarded book Severe ME/CFS: A Guide to Living

*A Facebook group has been opened by her friends “In Memory of Emily Collingridge”

One Last Goodbye

Yesterday marked the 3rd anniversary of the death of Lynn Gilderdale on 4th December 2008, after 17 years of suffering with very severe myalgic encephalomyeltis, which she had contracted at 14 years of age. Along with others who have lost their lives to the effects of this disease, Lynn is never far from our thoughts and our sincere condolences are with Lynn's family at this time; particularly with her mother Kay, whose deeply moving book, One Last Goodbye, is dedicated to her inspirational daughter. Kay is also a contributor to the film Voices from the Shadows, produced by Natalie Boulton and Josh Biggs, mother and brother of a sufferer of severe ME. In the Epilogue to One Last Goodbye, Kay writes:

“Meanwhile I have decided to carry on campaigning in Lynn's name to promote awareness of ME and to raise money for research. Research is the key to understanding this illness and Lynn has already made her own contribution. When her body was examined by the pathologist who specialised in M.E, he discovered “dorsal root ganglionitis” - infected nerve roots – and nodules of Nageotte, which are little tombs of dead cells, in her spinal cord. These would have caused her terrible pain and sensory nerve damage. They found similar cells in the body of Sophia Mirza, an ME sufferer who died in 2005 at the age of 32, and I believe in other sufferers. These findings are proof that Lynn's ME was a neurological disease”.

Lynn would say to her mother:

“The answers are within me, Mum. It will be too late for me but it will help others.”

Kay says, “I hope she was right and that some good will come out of her death and others will not have to suffer the way she did.”

We sincerely share that hope and extend our deep respect to Kay for all she has been through and our grateful thanks to her for all she is doing to help make that hope a reality. You can read more of Kay's memories of Lynn in our September post here.

“One Last Goodbye” by Kay Gilderdale is published by Ebury Press (ISBN 978-0091939144)


You can read some Amazon customer reviews here.
To help raise awareness, please ask your local library and local book shops to stock copies of this book and also Lost Voices.

You can buy One Last Goodbye from several shops or on-line in paperbook or ebook format from The Random House Group.

If you buy through the Easyfundraising site, e.g. from Amazon or The Random House Group and choose Invest in ME as your cause, the charity will receive up to 2.5% of the price as a donation, with no extra cost to you.

UPDATE:  Voices from the Shadows is now available for those in USA and Canada to view online on MUBI and for those in UK and Europe to buy on DVD.  You can watch the trailer here.

To raise awareness, you could send these links to your MP, GP, local and national media.

The film won the “Audience Favourite Documentary Award” at its world première at Mill Valley Festival, California in October 2011. Invest in ME hosted the film's UK première in Norwich and also in London in December. Thank you for your support in raising awareness of severe M.E.


*Remember ME is a fundraising page on Everyclick for sponsors wishing to donate to our cause in memory of those who have lost their lives to this disease.



Sophia Mirza 1973 - 2005

Today marks the sixth anniversary of the tragic death of Sophia Mirza, aged 32, from the effects of severe myalgic encephalomyelitis, and our thoughts today are of Sophia and her family.


Sophia's mother, Criona Wilson, created a website to publish details and related correspondence with those concerned with Sophia's case. Here are some extracts from Sophia and M.E:


“The object of this site is to show how and what was done to Sophia, so that maybe through this, others will become aware of the horrors perpetrated on her and on many others suffering from this terrible disease”.

"The day before she died I promised Sophia that her life would help many other people. She answered "then it was all worth it". Those were the last words she spoke. This website is for all the thousands of sufferers who have M.E. and their families."

Criona and her daughter Roisin are also among the contributors to the ground-breaking independent documentary film Voices from the Shadows, produced by Natalie Boulton and Josh Biggs, mother and brother of a severe M.E sufferer.

Voices from the Shadows won the “Audience Favourite International Documentary Award” at its World Premiere at Mill Valley Film Festival last month.

Invest in ME is hosting two UK screenings of this important film in Norwich on 2nd December and London on 7th December. Please click here for details. Tickets must be ordered in advance so please order without delay if you wish to attend.

Criona has updated her website with correspondence over the course of this year with the Chief Medical Officer and Minister for Care Services, among others, on a page titled WHO Cares? Very sadly, this page concludes with:

“The answer I found is transparently clear: nobody, but nobody, cares.... enough.” Críona Wilson, November 2011.

Our hearts and sincere condolences go out to Criona and her family. Criona may be contacted via the website or by email sophiaandme@hotmail.co.uk

World Premiere of Voices from the Shadows

Today, Saturday 8th October 2011, sees the world premiere of Voices from the Shadows - a ground-breaking documentary film about ME at Mill Valley Film Festival in California.

By special arrangement with Mill Valley and in cooperation with MUBA, those in North America can watch the film on-line, free of charge, until 30th October, but you will not be able to download it for later viewing. Two UK screenings in Norwich and London in December have been arranged by Invest in ME. Please click here for details.

We believe that viewers may find this film intensely moving, compelling and also informative, but please be warned that it may be tough to watch if you have severe ME yourself as it brings home the heart-rending reality of the illness.

Please also note that it is not suitable for viewing by children with ME.

The film has been made by the brother and mother of a severe ME sufferer. Josh Biggs is a professional freelance editor and cameraman. Natalie Boulton was an artist/teacher and is a full time carer for her daughter who has been ill for over 20 years. Both are first-time directors and producers. The music for the film was written and kindly donated by Emmy-nominated composer David Poore. 

"Voices from the Shadows is the most important and significant film on pediatric ME that has ever been produced" – Prof. Leonard Jason.

“The film foregrounds the riveting stories of several British families confronting what must be everyone's worst nightmare: a loved one suffering a life-altering illness that leaves him or her bedridden and in constant pain, with no apparent cure.

But what if the medical establishment made the situation worse instead of better? Such are the heartbreaking circumstances of the under-reported controversy surrounding ME (myalgic encephalomyelitis), aka chronic fatigue syndrome.

First-hand accounts from patients, caretakers, and medical experts paint a shockingly confused state of affairs—and underscore the urgency and frustration around this issue. A call to action for anyone who cares about the health and well-being of their community, this powerful film is equally a tribute to those whose voices must be heard.”
—Atissa Manshouri

Presented in association with UN Association Film Festival

There will be a panel discussion following the screening with invited guests:
David Tuller, lecturer, Graduate School of Journalism at UC Berkeley, frequent contributor to The New York Times.
Natalie Boulton, filmmaker, Voices from the Shadows
Dr. Jose Montoya, associate professor Stanford School of Medicine

Screening: Sat. Oct 8th, 2011 @ 2:00 PM - Smith Rafael Film Center, San Rafael, CA.

Running time: 63
Country: UK
Category: DOCS
Directed by: Natalie Boulton and Josh Biggs
Directors/Producers/Editors: Natalie Boulton, Josh Biggs
Cinematographer: Josh Biggs
From film festival website.

UPDATE

Voices from the Shadows is now available for those in USA and Canada to view online on MUBI and for those in UK/Europe, Australia and New Zealand to buy on DVD.  You can watch the trailer here.

To raise awareness, you could send these links to your MP or political representatives, your doctors and medical team, any other professionals you have personal contact with in education or social services, as well as local and national media.

Voices from Shadows is a development from the highly-recommended book Lost Voices.