IIMEC8 DVD now ready for delivery!

2013 Conference DVD

The 2013 Invest in ME conference DVD set is now to ready for distribution. They are sold at the lowest possible price:  UK: £14, Europe: £15, Outside Europe: £16, all including p&p/shipping.  To order and see details of the speakers and their presentations, click here.   

Kate was among the carers who attended the conference, as her husband has ME.  She commented the following day:

"Am going to order a number of copies of the DVD when it goes out, and can only recommend that people do likewise, so we can start rolling out the education that came out of yesterday's conference where Invest in ME had pulled together so much vital research under one roof. Fantastic. For me it was a huge big chunk of blue sky!! Keep positive all my friends and just hug the organisers of this event for what they achieved yesterday".

Includes Article on LDIFME

Annabel, who has ME, said of her husband:

 "Ross came back effervescing with enthusiasm and praise for the conference and the speakers. He also kept dipping into the journal and reading me sections. I need to have a look but I have a suspicion that that may well find its way into local medical hands. Thank you IiME."  You can read the online version of the 2013 conference edition by clicking here. 

Invest in ME replied:  "Thank you to everyone who came and supported this conference. It was a very uplifting day in many ways. Also the biomedical research meeting was excellent, and the pre-conference dinner event. The charity is also appreciative of all the positive comments from the speakers - some of them first time to the conference - and their comments of support for IiME. Also wonderful support from Norway and Sweden - many patients and carers coming here in large numbers. Thank you again to all those supporting the same objectives - more high-quality biomedical research into ME, more education about the real situation with ME and more awareness of the need for more funding of bomedical research".  A meeting of the European ME Alliance was held the following day and so there are many positive outcomes in the pipeline.

In their the July newsletter, Invest in ME wrote:

The IIMEC8 conference and Biomedical Research into ME Collaborative meeting (BRMEC) were the most successful yet. Mainstreaming ME Research was the theme and title of the conference - Infection, Immunity and ME - reflecting our view that ME research is finally accepted as part of proper science and deserving of consideration for careers in research and for funding.

There was a great sense of optimism about the future of ME research. New researchers are learning about ME and becoming interested in this area of medicine. The data is pointing clearly to immune system dysfunction and the detective work is well underway to help solve at least some of the mysteries in this very complex illness.

Many of the body's systems are involved and there is a great deal of work for researchers from many different areas in different countries.

Diagnosis is still problematic as patients vary a lot and without careful history taking and the right kind of questioning many treatable conditions may be missed. On the one hand doctors need to be very careful before giving patients an ME diagnosis and on the other hand one has more success of treating patients successfully if the condition is recognised early. The feedback from the events confirm IiME's views -

Mainstreaming was the right thing to do
Informal meetings were important
International collaboration was important
A positive feeling existed that real progress being made with biomedical research

The situation of severely ill bedbound ME patients was also discussed by some of the presenters at the 2013 IiME conference. Some extemporaneous notes on severe ME from the conference, and after, are available here.  Doctors simply do not know what to do with these patients so there is an urgent need for education. 

A full conference report was written by Dr. Rosamund Vallings of Auckland, NZ.  She concluded:

" Towards the end of the proceedings, Ellen Piro (Oslo, Norway) presented Invest in ME with a special

award acknowledging all the effort in organising these conferences, bringing together so many 

distinguished researchers and clinicians from around the world, encouraging collaborative research 

and enabling patient participation. An award was also given to Professor Malcolm Hooper for his 

great efforts over the years.  I would like to add my thanks to all these people, and in particular to both Invest in ME and the Alison Hunter Memorial Foundation. I must also thank ANZMES for giving me the opportunity to attend such a wonderful event."

Click here to read Dr. Vallings full report in pdf.

Click here to read Mark Berry's report on Phoenix Rising. 

Click here to order the order 2013 conference DVD.

Click here to read the Journal of IiME 2013 conference edition online.

Click here to subscribe to the Invest in ME newsletter.

Happy Birthday To Us!

UPDATE:  Click here for this post in pdf and click here for the statement by Invest in ME.

BIG THANKS to Krystal and Wobser for our birthday photo! 

The Let's do it for ME campaign was launched by a small group of people with severe ME in July 2011 in support of the proposal by innovative and forward-thinking UK-based charity Invest in ME to establish a centre of excellence for ME based in East Anglia and the first of its kind in UK/Europe, combining translational biomedical research with patient care and education and training for medical professionals, in collaboration with international researchers and like-minded ME organisations across the world. We are keen to help progress research and treatment, not only to benefit ourselves as patients, but also to avoid losing another generation to the ravages of this disease. We have no more time to lose.  We wished to assist in a practical way by raising the £100k needed to fund the foundation project to get the research strategy underway in Norwich. We were delighted to receive supportive comments for our Guest book or by other means, from some of our MPsthe Countess of Mar and Jane Colby, Executive Director of The Young ME Sufferers Trust. 

UEA foundation project fully funded

At the 8th annual Invest in ME international conference in May, Dr. Ian Gibson announced that we had reached our initial fund-raising target, which means that we had raised £100k in under two years. This is no mean feat, starting from scratch from our homes and beds, with no campaign budget or publicity.  We could not have achieved this without the tremendous efforts of a wide range of supporters, from very severely ill survivors to wonderful willing wellies. We are genuinely delighted and appreciative of any types and all levels of support, and there have been too many ingenious, innovative, creative, generous, courageous and inspiring ideas, events and contributions to mention them all individually here, some are featured in our blogs and main websites and please do let us know if you'd like yours added. 

Our Global Community

Our supporters hail from all corners of the UK, Europe, Canada, USA, Australia, NZ, and over 3500 votes in April won Invest in ME 1st prize of £2000 in The Big Break contest run by Direct Debit.  Everyone involved is a volunteer and every penny raised goes to the Biomedical ME Research.  Any competition prizes or similar resources are donated.  Members of the planning group run the campaign websites and on-line shops, organise ME Awareness events such as The Big Sleep for ME, designed to be accessible to people of all ages and levels of illness severity and launched in 2012, ongoing fundraisers such as the 1st of each month One Day-One Pound and Small Change to Change M.E, the Christmas card competition, calendars, summer quizzes, card sales, stalls, supermarket and church collections. We also proactively help to organise or support other patient initiatives that include Invest in ME, such The Big Shave 2013 and Walk for ME. This is all done painstakingly between us over the course of days, weeks, months as and when illness allows and we are ever grateful for all help and support.

BIG THANKS TO ALL 

Writer Jacqueline Rayner is a founder member of our planning goup. She had been planning with her friends and colleagues at Big Finish Productions to produce a charity audio play for download in aid of Invest in ME, based on the character of Bernice Summerfield: Many Happy Returns. Not content with that, producer Scott ran the Edinburgh Marathon for Invest in ME, writer Simon donated funds from his choir, and others working on the project have done more besides.  You can see some of these lovely people in our Bear Meets gallery on the main Let's do it for ME website. 

BIG THANKS BIG FINISH

At the same time, planning group member and writer Barnaby Eaton-Jones reworked his play, Running To Stand Still, in aid of our cause and again, everyone involved gave generously of their time and talent.  

BIG THANKS BARNABY

Music artist Mama Chill decided to proactively support Invest in ME in her awareness raising and by donating proceeds of downloads and joining the team. Her ME Awareness track is based on the original “I Can't Stand The Rain”, and her new track, “Don't Say Nuthin If It Ain't Worthwhile” was released for May Awareness. There are various other artists, writers, musicians, photographers, supporting the charity. 

BIG THANKS  MAMA CHILL

Make ME Crafts exploded onto the scene last year and is proving hugely popular, with an ever-expanding team producing an impressive range of arts and crafts available all year round.  Katie summed it up with this comment: “Big thankyou to Jon because you have brought the community together, its really positive, everyone is happy making and doing things they enjoy and its all going to hopefully find what is going on with our bodies !! Sooo happy to be a part of this XD xx” 

BIG THANKS JON AND TEAM

Another member of our planning group featured alongside an advert placed by IIME to raise awareness of the foundation research project. Rosa had previously crocheted soft wool blue awareness wristbands for IIME and her grandparents hosted a coffee morning in aid of our cause. Following a decline in her health, Rosa was moved to a nursing home, and fed by nasojejunal tube. She chose to mark her 21st birthday by raising awareness and funds for our cause. The staff at the nursing home joined in with a pyjama day with all proceeds to Rosa's appeal. Goodwill messages were posted across the social networking sites and some people used Rosa's photo as their profile picture for the day. Her mother said that the appeal passed all their expectations. Having contracted ME at 8 years of age, Rosa's story epitomises the indomitable spirit of the majority of people of all ages with ME, as well as the spirit of our campaign. 

BIG THANKS ROSA AND FAMILY

Empowerment is a key element driving the campaign and it has been very rewarding to see children and young people in particular, as well as the very severely affected, able to play a role in speaking out about their disabling illness and how it is viewed and treated by society and the medical profession, whilst taking such positive steps to raise funds for the translational biomedical research required to bring realistic hope for their recovery, with support of well friends and family members. 13-year old Harri wrote:

“Although it has been a year since I was in hospital due to M.E. I am still struggling with this awful misunderstood illness. I am still not in school and I want my life back as I knew it. I know many other children who are suffering with this illness too and I am in touch with them. They are also missing out on so many things like me. This is such a great cause, raising money to find a cure!!”

BIG THANKS HARRI AND ALL WHO SUPPORT THE YOUNG ONES

We have clearly all been very busy over the past two years, so what's next?

BIG THANKS ALL AT UEA 

The £100k raised has enabled the translational biomedical research strategy to get underway at the University of East Anglia by fully funding the foundation project on gut microbiota in ME patients.  ME is classified by the World Health Organisation as a neurological disease, but a body of research points to it as primarily a disease of the immune system with downstream effects on other systems and organs in the body and this is consistent with "encephalomyelitis" as that means inflammation of the brain and spinal cord and inflammation is an immune system response.  This could also help to account for the often fluctuating nature and variable severity of symptoms, as inflammation tends to flare and subside.  Poliomyelitis is caused by a virus that multiplies in the intestine and ME has been described as atypical or non-paralytic polio.  When Jane Colby contracted ME she was referred to microbiologist, the late Dr. Betty Dowsett, and was found to have a virus similar to the polio virus.  The majority of the immune system is in the gut and so it makes sense for a strategy aimed at finding reliable biomarkers for early and accurate diagnosis and effective treatment options to begin by looking at the gut and gut microbiota and this is an approach being taken by researchers in other countries to ME and to other diseases that affect the immune system. 

"Neuroimmune disease is very serious" 

A week after the hugely successful and productive 2013 conference, Invest in ME announced plans for a UK clinical treatment trial of Rituximab, an immune modulating monoclonal antibody used in treatment for autoimmune diseases and non-Hodgkin's lymphoma and found to result in major or overall improvement in all ME symptoms in 67% of patients in research in Norway.  This research points to ME as an autoimmune disease and even better results have been achieved in follow up studies by increasing doses to create a more prolonged effect.  Researchers in other countries now need to replicate and validate this important research, which has huge potential to increase understanding of the disease, by studying those who respond well to the drug as well as the non-responders.  Rituximab helps about 70% of patients with rheumatoid arthritis.  We are delighted that Professor Jonathan Edwards is a acting in an official capacity as Advisor to Invest in ME on all aspects of the trial as there is no-one better placed to do this, and we are now helping Invest in ME to raise the funds required for the dedicated Rituximab Research Fund, which stands at £15,000 at the time of writing.  

BIG THANKS PROFESSOR JONATHAN EDWARDS

Invest in ME has other biomedical research and related projects in the pipeline to be supported from the main Biomedical Research Fund and we will keep you posted when we have news of these to share.
The charity does a lot more besides organise and fund biomedical research and if you wish to support the other aspects of the charity's work - their campaigning, advocacy, education and awareness materials and the excellent conference events, there is a general fund you can donate to. Details and donation options are on the Invest in ME and Let's do it for ME websites.  The charity's wonderful trustees perform their work for free, ceaselessly all year round, sometimes around the clock and often under challenging circumstances, as ME sufferers or parents/carers themselves, working hard to make progress in ME research and treatment and to bring wider understanding of ME in UK into the 21st century.  What they have achieved since they formed as a group in 2005 and as a registered charity since 2006 is nothing short of miraculous.  They have done much to galvanise biomedical research into ME and we are proud to support their efforts.  

We are immensely grateful to Invest in ME and to all those who support them in their international drive to instigate, fund, and conduct the kind of high quality scientific biomedical research that may be translated into reliable diagnostic biomarkers and long-awaited effective treatment options for this organic disease and we are also extremely appreciative of  everyone who supports our campaign by raising awareness and funds in such a variety of ways.  Wherever you are based and whatever role you play, be it front of stage or behind the scenes - we thank you for your support.

Happy Birthday To Us All - Let's do it for ME!

*BIRTHDAY CELEBRATIONS NEWS*

As part of our 2nd birthday celebrations we are excited to announce a matching donation period for the monthly One Day One Pound event up to a maximum value of £1000 + £250 in gift aid 
from 26th July to the 2nd of August inclusive.  
The total donated will go towards the UK Rituximab Treatment Trial being organised by Invest in ME.

To donate from £1 text the code ODOP99  to 70070 

or donate from £2 via the 

One Day One Pound JustGiving Page 

The page currently stands at £2,520.22 + Gift Aid of £314.81 = Grand Total £2,835.03 so the target will be a total of £4,085.03.  When we reach that total our generous benefactor will donate the £1,000.00 plus £250.00 in gift aid.   So the Rituximab Fund will increase by a total of £2,500.00!! 

Help us celebrate our 2nd birthday by doubling your donation to this important biomedical research!

Let's do it for ME!

Announcing a Matching Donation Period

Let's do it for ME's 2nd Birthday!!

We officially launched our campaign on 27th July 2011 and as part of our 2nd birthday celebrations at Let's do it for ME we're excited to announce a matching donation period for the monthly One Day One Pound event up to a maximum value of £1000 + £250 in gift aid from 26th July to the 2nd of August inclusive.  The total donated will go towards the UK Rituximab Treatment Trial being organised by IiME.

To donate from £1 text the code ODOP99  to 70070 

or donate from £2 via the 

One Day One Pound JustGiving Page 

The page currently stands at £2,520.22 + Gift Aid of £314.81 = Grand Total £2,835.03 so the target will be a total of £4,085.03.  When we reach that total our generous benefactor will donate the £1,000.00 plus £250.00 in gift aid.   So the Rituximab Fund will increase by a total of £2,500.00!!

Help us celebrate our 2nd birthday by doubling your donation to this important biomedical research!

*Click here to read the Let's do it for for ME 2nd birthday review*

Carers' Group for ME

At the 2013 Invest in ME conference (IIMEC8) one of Invest in ME's supporters approached them regarding the setting up of a carers' group for ME.

This was a topic which the charity had been thinking about following their recent meeting with Dr Martin McShane.

As any carer knows, it is not only the patient whose life is affected, and with ME there are even less support network structures to help patients and carers than for other illnesses.

So Invest in ME are inviting people to write to them if you would be interested in forming this.

There are many ideas which can be introduced into this with the objective being to improve the lives of carers and patients.

This idea is not connected with the Let's do it for ME campaign, but we know that many of our supporters are carers of people with ME and so we thought you might like to know about this. 

Please contact the charity at info@investinme.org if you would be interested.

You can sign up to receive the Invest in ME newsletter by clicking here.

Professor Jonathan Edwards to Advise IIME on Rituximab Study!

Announcement by Invest in ME: Invest in ME have been working on the possibilities of initiating a UK clinical trial using rituximab to treat ME patients following on from our Biomedical Research into ME Collaborative Meeting (BRMEC) on 30th May 2013 and the 8th Invest in ME conference IIMEC8) on 31st May 2013. At these meetings Professor Olav Mella and Dr Øystein Fluge presented further evidence of the efficacy of rituximab in the treatment of ME patients in Norway and it became clear that a similar trial is needed in the UK to benefit UK ME patients as well as provide support for the international efforts in finding treatments for ME. We are pleased to announce that Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), has agreed to advise the charity on all aspects of a UK rituximab trial. Professor Edwards was responsible for both the phase I and the proof of concept phase II (NEJM 2004) studies in rheumatoid arthritis , which formally established the validity of B cell depletion in autoimmune disorders. It all started with a paper called ‘Do self-perpetuating B lymphocytes drive human autoimmune disease?’  published in Immunology in 1999 [1]. There is no other expert in the UK who is better placed than Professor Edwards in advising the charity in setting up a rituximab trial to benefit ME patients. A plan is being formulated and Professor Edwards and the charity are involved in discussions to establish feasibility and suitable siting for the project. At our BRMEC and IIMEC8 conference meetings we discussed with the Norwegian researchers (Fluge and Mella) about cooperation on this and other projects and we will be setting up further meetings now that this plan is being progressed. A great deal of work necessarily needs to be made, not least of which will be a huge effort by the charity and its supporters to raise the funding. The charity has a number of pledges and offers of support and we will continue to develop more – raising the profile of this project and raising awareness of ME. We welcome your support. 1. Edwards JC, Cambridge G, Abrahams VM. Do self-perpetuating B lymphocytes drive human autoimmune disease? Immunology. 1999;97:188–196. [PMC free article] [PubMed]  Click here to see the above on Invest in ME website and all options to donate to this important clinical treatment trial. The Let's do it for ME team are really excited about this announcement and would like to congratulate Invest in ME on snagging the best man for the job!  We are immensely grateful to Professor Edwards for his interest and help.  Let's get this trial funded!

Press Release for IiME's Big Break win of £2000!

Invest in ME statement - http://www.investinme.org/IIME-Newslet-1306-01.htm

"Thanks to a tremendous effort from (over 3500!) supporters and colleagues Invest in ME were able to win the Direct Debit The Big Break 100 good causes initiative for April.  Apart from winning the first prize of £2000 - all of which has gone directly to the IiME Biomedical Research Fund to support biomedical research into ME - this has also created much needed awareness of ME in the public.  Here is the Direct Debit press release .. "

Bacs Press Release:

Independent UK charity, Invest in ME (IiME), has received an unexpected windfall in a nationwide campaign to give 100 good causes a Big Break, courtesy of Bacs Payment Schemes Ltd (Bacs), the organisation behind Direct Debit.

Each month Bacs is setting aside a £5,000 pot to be shared between charities and good causes and is encouraging members of the public to vote for their most deserving good cause. The charity with the most votes will win £2,000, the second most popular will win £1,000 and the remaining £2,000 will be shared between 200 runners-up.  

Invest in ME, a charity run by volunteers, campaigns for research and funding to establish a better understanding of the causes of Myalgic Encephalomyeltis (M.E.) and help develop better medical treatments for the illness. And the charity is now £2,000 better off after coming out top in April’s public voting.

Mike Hutchinson, head of marketing at Bacs, said: “The work that Invest in ME carries out is not only crucial for the development of better treatments for the illness, it’s also carried out for free by volunteers so it’s great to be able to support the charity and announce it as the second winner in our Big Break initiative to help 100 good causes.”   

Kathleen McCall, chairman at Invest in ME, adds: “We’re absolutely delighted to have won the £2,000 from the Big Break campaign. One of the charity’s main objectives is to create a UK centre of excellence, which can provide proper examinations and diagnosis for M.E patients and the £2,000 prize money will go a long way in helping us to achieve this. On behalf of all the volunteers at Invest in ME, I would like to thank everyone who voted for us.”

Let's do it for ME supporters have energised biomedical ME research.

Thank you so much for your support fro, the team at Let's do it for ME! 

Free Delivery from Spreadshirt Today 21st June!

To celebrate International T-shirt Day, Spreadshirt is offering free delivery

no minimum order value

only valid on 21 June 2013 

Voucher code: TDAY2013 

Let's do it for ME Shop - profits to Invest in ME  

http://ldifme.spreadshirt.co.uk/

ME Awareness Shop - profits to Invest in ME (includes items with Invest in ME logo) 

http://653855.spreadshirt.co.uk/

The Big Sleep for ME - profits to Invest in ME
http://thebigsleepforme.spreadshirt.co.uk/

Happy Shopping - thank you for your support!

All ways to shop for Biomedical ME Research (free delivery offer Spreadshirt only) 

http://ldifme.org/shop/

Superstar Mum Catherine Clapton

Catherine (right) Superstar Mum of ME sufferer Jessica (left) and brother (middle)

Catherine's Tri-Event.

1. Catherine will be swimming 100 lengths of  the 25m pool at Full Well Cross leisure centre on Monday 13th May.  That's 2.5 kilometres over 1 1/2 miles.

To see her Just Giving page click here

UPDATE 29/05/2013 Catherine has raised £2116.88 including gift aid

2. Coffee/tea /cake sale on 25th May 11-1pm 32 Auckland Rd Ilford (if you live local!!)

3. Attending Invest in ME's - 8th International ME Conference at the end of May

Catherine writes -

''I am totally unfit and this will kill me! however I need to do something in order to raise funds and awareness for ME/CFS. My daughter Jessica has had this awful illness for 5 years and up until now I suppose you could say I have had my head in the sand. Hoping that things will sort themselves out and she'll just miraculiously recover. This last year has been her worst and so I am changing tack and getting active in every way.

 My daughter Jessica who will be 21 this year has now had it for over 5 years. It is a soul destroying illness to have because everyone knows someone who has had it and has something to say about it. It is so hard to describe to people when they already have their own impression of what it is. People can't understand how someone can actually do nothing, they always say well she must watch telly, or I bet she's on the computer all day.

Can you ever remember a time in your life when you were dog tired, so tired you couldn't talk, think, (foggy brain) couldn't even sleep you had gone past that point. You got giddy and achy (no coordination), cranky and emotional.  Well, Jessica is like that all the time. But worse: If she does more activities than her body can cope with, she also gets flu like symptoms.

Recently she has been going to sessions for Cognitive Behavioral Therapy(CBT) every couple of weeks. These extra activities (coming down stairs, getting in a taxi to the hospital in Great Ormond Street, walking into the hospital, the session and then returning home) have had a knock on accumulative effect on her and for the last month she has had flu like symptoms. The average person when they get flu feels bad for a week or so (and wouldn't wish it on their worst enemy). If they were ill for a month they would be really depressed. Jessica is depressed of course but not because she's ill, but because she can't see when she is going to ever be well.

I really want to support her but until we find out what causes Myalgic Encephalopathy in the first place, there is no cure. I am doing various things this May to raise funds -

Invest in ME are trying to raise £100,000 for research this year and I would really really appreciate it if you could click on my justgiving page and donate something.  Thank you so much for reading to the end.''

Catherine is one of the many folks who are supporting funding for biomedical research in May and later this year to read more super hero stories see the full list of Just Giving pages here Let's do it for ME / Invest in ME 

Also see the Let's do it for ME website for more details of event in May (ME Awareness Month)

MANY HAPPY RETURNS: A HUGE THANK YOU!

"We'd like to take the opportunity to say a huge thank you to everyone who supported last year's Bernice Summerfield story Many Happy Returns, the celebratory release featuring a wealth of talent in front of and behind the camera. It's so far raised £4454 for the charity Invest in M.E. And it's still on sale!" 

Bernice Summerfield: Many Happy Returns is available on the website for only £10, as a download only, with all proceeds to Invest in ME charity, for biomedical research into myalgic encephalomyelitis (M.E)

A feature-length tale, it's written by Xanna Eve Chown, Stephen Cole, Paul Cornell, Stephen Fewell, Simon Guerrier, Scott Handcock, Rebecca Levene, Jacqueline Rayner, Justin Richards, Miles Richardson, Eddie Robson and Dave Stone and stars, amongst others, Lisa Bowerman, Stephen Fewell, Ayesha Antoine, Miles Richardson, Katy Manning, Nicholas Briggs, Sylvester McCoy and Sophie Aldred.

Cast: Lisa Bowerman (Bernice Summerfield), Stephen Fewell (Jason Kane), Steven Wickham (Joseph), Miles Richardson (Irving Braxiatel), Louise Faulkner (Bev Tarrant), Harry Myers (Adrian Wall), Thomas Grant (Peter Summerfield), Ayesha Antoine (Ruth), David Ames (Jack), Marcus Hutton (Leonidas), Katy Manning (Iris Wildthyme), David Benson (Panda), Nicholas Briggs (The Curator), Sylvester McCoy (Late Arrival), Sophie Aldred (Dave Stone), Christopher Allen (Adam), John Ainsworth (Casino Robot), Gary Russell (Vice Chancellor) 

Big Finish produce an officially licensed range of Doctor Who dramas.  Here are some responses from fans of their Facebook page to the exciting announcement above:

"Great news. Having M.E myself, it would be great to see some breakthrough medically . Well Done Big Finish !"

"Amazing! Thanks again to everyone involved in this and being so generous in giving the proceeds to charity x"

"This was a truly amazing release. The scenes with Benny and Jason at the end literally had me sobbing my heart out. This is how to do an anniversary story, Doctor Who producers, I hope you've taken notes."

"I cried my eyes out as well at the end! Well done! Good story.. great characters and a good cause! How about another one next year!!"

"Congrats on money well raised."

Future archaeologist and adventurer, Bernice Summerfield, is the creation of top novelist, comics and TV writer Paul Cornell; an enthusiatic supporter of the Let's do it for ME campaign, having seen the devastating effects of ME first hand.  He has already done a lot to raise awareness by featuring characters with ME in his work.  Many Happy Returns was directed by John Ainsworth, Gary Russell and Scott Handcock; who also organised, produced, and generally ensured this happened. On its release in November, Scott had said:

'I was overwhelmed by how many people wanted to be involved with the project. Not only actors, but writers, sound designers, Toby at the Moat Studios - everyone! Everyone gave their time for Jac Rayner and her charity, Invest in ME, and this adventure has been truly worthwhile to pull together on every level!'

Upon receipt of the whopping cheque for £4454 earlier this week, Invest in ME said:

"This is quite an amazing achievement on top of what Scott already raised with his marathon running. It is a privilege to be supported by such generous people like Scott and his colleagues".
Many Happy Returns featured in an article in BBC Dr. Who magazine in October - you can see it on our website here - and you can see photos of Let's do it for ME Bear meeting some of the wonderful writers and cast in the photo gallery here. 

Bernice Summerfield: Many Happy Returns is available on the Big Finish website.   

A huge thank you to everyone involved in this production and to all supporting it!

You might also like: 

Justyce Served - A Small Start with a Big Finish - a book by Alun Harris and Matt West about the early days of Audio Visuals: Audio Adventures in Time & Space - the majority of the creative team went on to be involved with Big Finish.  The authors' profits from this book will be donated to Amnesty International and Invest in ME.

Running To Stand Still - an audio play about M.E. written by Barnaby Eaton-Jones. 

Our previous posts:
March 2012: Big Finish Helps Our Big Cause!
December 2012: Bernice Summerfield: Many Happy Returns Out Now!

The Big Shave 2013 - Sharon Hollier

"Hi, my name is Sharon Hollier. I am in my 40's and live in Welwyn Garden City, Hertfordshire.

I first was diagnosed with M.E. in 2000 and in 2004 I managed my symptoms so well that I was able to work part time but started relapsing in 2008 and had to give up working in 2010.

My teenage son had to give up school at the age of 12 because he also has M.E. He uses the internet on his computer to learn, research, play and communicate with his friends in their homes. I have always wanted to do something crazy for an M.E. charity and was inspired by Jessie J, on Comic Relief, to have my head shaved like hers. I'm having my hair shaved to a number one on the trimmers, not going totally bald.

My regular hair dresser will be doing the deed in her salon on Sunday 12th May 3pm at Cut Loose Hair Dressers, Hertford. I have been through a lot since I first had my hair cut there. I've also been through many different styles and colours. Tarnia (the proprietor) and her staff have always been supportive. I feel that as they have been there with me through my ups and downs, it would be appropriate to let them shave my hair.

I get quite emotional going to other charity events and thinking that my son is house bound with M.E. and there is little that could be done for him. This is my chance to raise some money and awareness for an M.E. Charity. 

So note it in your diary: My Big Shave will be 12th May at 3pm at Cut Loose hair salon, 30 Fleming Crescent, Hertford, SG14 2DJ.

To support Sharon's Big Shave on JustGiving, click here ..

The Big Shave 2013 for Invest in ME 

To text a donation use the code TBSI99 (that's the letter I) 

and the amount £1, £2, £3, £4, £5 or £10

to 70070

Remember that an extra 25% in Gift Aid is added to your donation if you are a UK tax-payer.

Please see the The Big Shave 2013 website for more details of this event for M.E. awareness week 6th - 12th May 2013 and if you would like to take part. Amy Hanson urged, "Please share with your friends, family, neighbours, even the neighbours dog! It would be great to raise as much as possible".

http://www.thebigshave2013.org/

The Big Sleep for M.E. is back for 2013!

Following the great success of last year’s event, The Big Sleep for M.E. is back for 2013. And this year with your help, it’s going to be even bigger and better! This fun and inclusive awareness and fundraising event for the UK Centre of Excellence for ME, includes a mass sleepathon that runs throughout ME Awareness Week 6 – May, as well as an opportunity to hold your own ‘sleep inspired’ event, such as PJ parties, PJ Pride Days and Sleepwalks, Sleep-cycles and more, so that even more people can get involved.

The ‘Sleepathon’ is extremely easy and flexible to take part in and means that anyone, even those with severe ME, can do their bit. All you need to do is lie back, make yourself comfortable, and, if you really want to, sleep! Do it at home or anywhere that takes your fancy, either on your own or as a group. And if you feel like it, dress up for the occasion. If fundraising, just get people to sponsor you, and for awareness, just let others know you’re taking part. The same applies if you are holding your own ‘sleep inspired’ event.

Whilst the Sleepathon takes part during ME Awareness week this doesn’t mean you can’t have your own sleepathon or ‘sleep inspired’ event at other times of the year. We need to keep up the pace if we’re going to beat ME!

The Big Sleep for ME has expanded massively since last year, and to get in the party mood it will be running a number of competitions and special events, including ones for children. There’s even a special Kids’ Den webpage for children with activities and competitions. It’s a fun way for them to get involved and keep them busy.

The event now also has its own online shop where you can buy Big Sleep merchandise such as sleepwear, tops and, the very popular Big Sleep Bear, that comes complete with his very own nightcap. For those on a budget, there are free stickers and transfer downloads.

The Big Sleep for ME was set up to fill the need for a completely inclusive ME event that anyone, including those with severe ME, could take part in. Given the limitations severe ME imposes, a great deal of thought went into what kind of event could take place. In the end, the solution was so obvious. Since, many with ME have to spend a lot of time lying down either on a sofa or in bed and some sufferers are completely bedbound, why not turn this into something positive and have a mass sleepathon. The Big Sleep for ME was born! Whilst the event now encompasses all manner of ‘sleep inspired’ events and is about having fun, it also has a serious side which is to not only raise much needed awareness and fundraising for the Centre, but also to increase awareness of ME generally.

There are so many ways to get involved and the fantastic thing about The Big Sleep for ME is that everyone, from sufferers to healthy supporters, can unite together to do something positive for ME.

If you want to find out more, the event’s website is a good place to start. The event also has its own Facebook page and is on Twitter, you can also email them. If you fancy taking part, the team has set up a group JustGiving page which you can join to make it even easier for you, and there are extensive online tools and information to help as well. You need to register to take part, but as thank you, you’ll be entered into a Free Prize Draw. The team have introduced this to keep track of everyone and plan for future years.

If you can’t take part, but would like to support the event you can always sponsor someone you know, or make a donation to The Big Sleep for ME fundraising group via its JustGiving page or by texting BSME99 to 70070 with the amount you would like to give (for example BSME99 £5 to 70070).

With special thanks to Julia Cottam from our ‘Let’s do it for ME’ team for thinking this up, and for all the hard work she’s put into developing and launching this inclusive and positive venture, as well as to everyone taking part.

We can all make a difference to ME!

Small charity - BIG Cause - Big Break!

Let's help Invest in ME try to win £2,000 for much-needed biomedical research into ME by voting for them in the Big Break in April.  To vote, just click on this link and click on the red button "vote for this cause". You can log in to vote with your Facebook or Google account or you can vote by post.   Voting ends 30th April. https://www.directdebit.co.uk/TheBigBreak/100GoodCauses/Pages/CauseDetail.aspx?CauseId=539  

You can only vote once so there's no need for daily voting - but to increase the chance of winning please share and tweet etc.  1st prize is £2,000.  2nd prize is £1,000 and a further £2,000 will be divided between the runners-up.  The Invest in ME biomedical research fund is currently at £88,100 and winning this would help us reach the initial £100,000 target of the Let's do it for ME campaign to fund the foundation research project at the University of East Anglia - please see our main website or Invest in ME for full details.    

Thank you for your support - Let's vote for Invest in ME!

County Donegal ME Event June 2013

ALL THINGS BEAUTIFUL 22nd June 2013 Co Donegal *Valerie has asked IiME to encourage as many ME sufferers as possible to send her their personal story plus photo as she believes it is an important way to use our collective voice and allow others to know that people with ME are not isolated to one area - that it is global problem.  IiME are happy to collate these stories, print them and send them to Valerie* On their website (click here) Invest in ME wrote: Valerie Moody is a courageous and determined lady from Co Donegal. Valerie has had ME for thirty years - the last nine years bedbound. Despite this Valerie believes it is still important to use what we have got and try to bring about change and, like us, she believes that if we want to bring about change then we have to do it ourselves. Valerie has helped IiME in the past and contributed to the costs of the CAWG meeting last year in London [1]. This made it possible for IiME to even attempt to achieve this in collaboration with the Alison Hunter Memorial Foundation of Australia. Valerie is now arranging another ME awareness and fund raising event entitled "ALL THINGS BEAUTIFUL" on 22nd JUNE 2013 at her home Momeen St Johnston, Co Donegal . between 2pm and 5pm. As she has done previously all funds raised in Sterling will be given to Invest in ME and in Euros to Tom Kindlon's Irish ME/CFS Association. The event is in a number of parts. The opening is being performed by a government official. Minister Dinny McGinley TD has agreed to come and open the event and he has even rescheduled governmental overseas meetings so that he would be able to attend. Minister McGinley came to Valerie's home almost two years ago to launch her book and it is impressive that there now exists a continued representation especially in government. There will also be a coffee afternoon and music. Valerie will also hold an ME Information corner and intends to put up on a wall all the stories which have been collected so that other people could read them and, in a more personal way, identify with us are real people with a real illness. It will be an opportunity for the community to get together and enjoy each others' company to see and bring about awareness of ME. The idea would be to get as many "important" people as possible to come and get photos. So Valerie is contacting ME support groups to see if they could send a representative to be there with him. It would be a good opportunity to impact and use our voices together so that people see that there are other people with the illness and that we are trying to help ourselves - and Minister McGinley is an official in the Irish Government and "although one man cannot change policy we can plant the seed for change". Valerie has asked IiME to encourage as many ME sufferers as possible to send her their personal story plus photo as she believes it is an important way to use our collective voice. This would also allow others to know that people with ME are not isolated to one area - that it is global problem. IiME are happy to collate these stories, print them and send them to Valerie to avoid her doing more work than is necessary as this would be easier for her and the items would be ready to pin up. IiME will be sending material to Valerie for display and distribution - along with any stories we can pass on. These stories may not get much publicity but Valerie believes that we can still plant the seed and when ME does come up at governmental level in the future there will be someone with an awareness of the effects of ME and will hopefully be on our side. By so doing the general public will be able to identify with our plight in a more personal way and be able to see that people with ME are real people with a real illness and had lives before ME devastated them. If you would like to contribute to this with your story then please send in, via email if you wish, your story with a photograph. We will print these and/or send them to Valerie. Our email address is -  info@investinme.org Our postal address is - Invest in ME PO Box 561 Eastleigh Hampshire SO50 0GQUK The venue for the event is at Valerie's home - a farm. Valerie had 300 to 400 hundred people at her house for tea at the last book launch that she performed and she is hoping that there will be a good attendance this time. She is hiring a marquee for the tea and music this year. Valerie explains that even if we educate the people that come to the venue it is still raising awareness and that perhaps when people do take ME they will at least be treated with respect and dignity by the people around them and that they will not always have to defend themselves against misperceptions and misinformation while waiting for a cure. Thank you from Valerie Further Information: [1] Click here Clinical Autoimmunity Working Group Meeting [2] Click here Let's Do It For ME Support ME Awareness - Invest in ME Click here to read this on Invest in ME website

February 2013