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.
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
