22 March 2012

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

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

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.

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”

11 March 2012

Rosa's Wristbands

Fancy Design
These lovely blue ME Awareness wristbands are made of blue baby wool tied with ribbon and were crocheted by Rosalind Amor and donated by her to Invest in ME charity to raise funds for the UK Centre. Rosa says:

"I am now a year older than the age Alison Hunter was when she died of ME in 1996. I am 20 years old. Alison Hunter had suffered, horrendously, from ME for 10 years prior to her death. Her symptoms included seizures, paralysis, gastrointestinal paresis, heart damage, massive ulceration to her throat, horrendous neurological problems and overwhelming infection.

I have had ME for 12 years though fortunately not as badly as Alison Hunter. My ME seemed to be triggered by a virus of the gut when I was 8 years old. However, the exact cause of my many unpleasant symptoms (pain, nausea, partial paralysis, *brain fog*, extreme tiredness and lack of stamina, hypersensitivity) was unknown to me and my family until last year when some Mitochondria tests gave a glimpse of at least part of what is going wrong. You can find out more about me via my

Simple Design
I have been crocheting wristbands to raise awareness and funds for the new centre proposed by Invest in ME Charity. There are 2 different designs and they are £2:50 each. I think this new centre is crucial if the ME community wants to move forward, towards better understanding and care for people like Alison Hunter and myself.  You can find out more about Alison Hunter here.

So please buy my wristbands to raise awareness of the suffering endured by teenagers with ME and funds to found a centre to provide a better future for them.

Please order by emailing info@investinme.org

Thank you for buying them."

Many thanks and very best wishes to Rosa.

You can visit Rosa's Facebook group - Let's do it for ME wristbands brigade - to post any photos of you wearing your wristband.  UPDATE: You can now also find Rosa's wristbands on the Make ME Crafts Facebook page.

Alison Hunter Memorial Foundation kindly sponsored two of the annual Invest in ME International Conferences on biomedical research by donating toward production costs of the DVD of the 4th conference in 2009 and contributing toward the cost of the 5th Invest in ME conference in 2010.

7th IIMEC was held in London on 1st June 2012 and was titled: Building a Future for Research into ME Clinical and Research Updates in Myalgic Encephalomyelitis.  A new Clinical Autoimmunity Working Group, initiated by collaboration between Invest in ME, The Alison Hunter Memorial Foundation, and researchers from the University of East Anglia and Bond University, met for the first time at the end of May.  We, as ME patients, are very appreciative of the dedication and hard work of all involved in this exciting new development and hopeful of the progress that these collaborative working arrangements will achieve.

On 9th July Rosa said,

"We raised £104.72 during ME awareness month with collecting tins. In spite of being bedridden with repeated vomiting:) 

Haven't made any wristbands though, hands too weak.

Have to buy Jon Watson's (Make ME Crafts) for time being.

I so wish we could get this centre running, I need it!"

So come on everyone - let's do it for Rosa and others like her - Let's do it for ME!

(for options to simply donate to the research now)

7 March 2012

Big Finish helps our Big Cause!

Lisa Bowerman and Ayesha Antoine
Big Finish Productions is pleased to announce a very special release to celebrate the twentieth anniversary of archaeologist and adventurer Bernice Summerfield. Many Happy Returns will be a unique feature-length drama where every penny will go to supporting the charity Invest in ME.

'Jac Rayner first approached Big Finish about possibly doing a small charity download late last year,' explains producer Scott Handcock. 'Gary Russell and I discussed the idea with David Richardson and quickly came to the conclusion that the
Bernice Summerfield range would be the perfect platform - not least because of Jac's close connections with the character. So I started sounding out a few actors, writers, sound designers - as you do - and nobody we asked said no... so it ended up being the sort of epic rolling adventure we never anticipated!'

'It's amazing how many people have donated their time not only for Jac's charity, but for what will hopefully be a very special release for
Benny fans. We've tried to reunite as many familiar faces as possible. It's the Bernice Summerfield equivalent of The Five Doctors - twenty years, a whole host of old friends, and all in the name of charity! I know I speak for everyone involved when I say it's been an absolute pleasure, honour and delight to work on - and one of the maddest days in studio we've ever had!'

Invest in ME works to raise awareness and funding into research of ME, a serious neuro-immune condition that affects 250,000 people in the United Kingdom. Its latest project - Let's Do It For ME! - is a patient-driven campaign raising vital funds for a Centre of Excellence at the University of East Anglia. The centre aims to translate scientific findings and evidence from research into applicable treatments for people suffering from ME, focussing on immunology and virology.

Big Finish stalwart Scott Handcock will also be running the Edinburgh Marathon in May on behalf of Invest in ME. For more information - or to sponsor him - please visit

Many Happy Returns will be released for download only later in the year. Please click on the link to pre-order and for full details on what the adventure has in store!

A BIG THANK-YOU to all involved with this fantastic project at BIG FINISH!