LDIFME Diamond Jubilee at 60k!

Congratulations to all involved on reaching the 60th £1,000 towards our inital target of £100k!

There is much to celebrate as you are all making a real difference to the lives of tens of thousands of people of all ages in UK and millions worldwide by helping to build a future for collaborative biomedical research aimed at finding reliable biomarkers for early diagnosis and effective treatment of myalgic encephalomyelitis as rapidly as possible and without further ado.

Invest in ME (IiME charity) held its 7th International Conference in London on 1st June, following the exciting and productive 2-day inaugural meeting of the new Clinical Autoimmunity Working Group.  The conference journal included an article by IiME about Let's do it for ME! They said:

"Let's do it for ME! is a patient-driven campaign to raise awareness and vital funds for a centre of excellence for translational biomedical ME research, clinical assessment, diagnosis and treatment for patients, and training and information for healthcare staff based at the University of East Anglia in the UK and aiming to work collaboratively with international biomedical researchers."

"The Let's Do It For ME campaign is a positive and proactive campaign. The aim is to raise funds for biomedical research but everyone's input is welcomed - be it just ideas or moral support for other people's fundraising.  Whilst raising funds for biomedical research the campaign is also raising much needed awareness and allowing correct information about ME to be disseminated." 

"In a short article such as this we cannot mention everyone who has taken part, or contributed with money or ideas. But the campaign has been effective and re-energised research, making the go-ahead for the IiME proposal nearer to reality.  Rather than waiting for others to do things – a strategy which has not fared well over a generation – the people involved in the efforts to make the IiME proposal a reality are taking it on themselves to make a difference."

Please click on this link to read the full article on Let's do it for ME in The Journal of IiME Volume 6 Issue 1 - IIMEC7 Conference Edition . The Journal contents include the following articles:

-  Let’s Do It for ME
- The New International Consensus Criteria for ME
- Jørgen Jelstad - The Drug and the Possibilities of Changing Everything
- Current Status of ME in Sweden
- Treatment of ME and FM with a Staphylococcus Vaccine
- Transcranial Sonography in the Diagnosis, Follow-up and Treatment of ME
- The Immunological Basis of ME - by Margaret Williams
- Presenters at IiME Conference
- Conference Agenda

Hard copies of the Journal are also available from Invest in ME - email info@investinme.org or visit www.investinme.org for other contact details and the full set of conference DVDs are also now available.

Many thanks to all those LDFIME supporters who kindly submitted photos for the image used and congratulations and many thanks to all who have joined in with the spirit of this campaign so far! 

LET'S DO IT FOR ME!

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!

Dr. Betty Dowsett 1920-2012

Dr. Elizabeth Dowsett passed away 14th June, aged 91, and her loss is keenly felt by the ME patient community. IiME (Research) Charity said,

“Her voice was a constant force in support of ME and ME patients over the years”.

Born in Newport Gwent, Dr. Dowsett studied medicine at Edinburgh University and worked as a GP in London before becoming a consultant microbiologist. She developed considerable experience and expertise in ME, seeing thousands of patients from the 1960s onwards, and working with other experts in the field, such as Dr. John Richardson and Dr. Melvin Ramsay.

Following her retirement, Dr. Dowsett continued to lecture and advise patients and professionals about ME. She worked with Jane Colby of The Young ME Sufferers Trust on a ground-breaking study into ME as the cause of major long-term sickness absence from school, published in 1997. In 2001, she was the key speaker at the launch of the Welsh Association of ME and CFS Support in the National Assembly and continued as an adviser to WAMES.

Dr Dowsett attended the very first IiME conference as Invest in ME's guest of honour and her name will be found in innumerable articles and references on ME on the IiME website. In this article, co-authored by Jane Colby, Dr. Dowsett wrote:

“In the absence of a straight cure for ME, researchers have focused on psychological therapies, touted as cures by irresponsible practitioners and reported as such in the media. Like Invest in ME and The Young ME Sufferers Trust, I believe that enough is enough. It is time to focus attention on the physical nature of the illness, and particularly in my opinion, on the microbiology as well as the host factors and the effects. Early identification of infecting organisms, especially in children, who are the epicentre of this illness, is vital”.

Dr. Dowsett had an interest in human enteroviral infections and co-authored a paper published in 1990 titled Myalgic encephalomyelitis – a persistent enteroviral infection?  From the Abstract:

“This illness is distinguished from a variety of other post-viral states by an unique clinical and epidemiological pattern characteristic of enteroviral infection. Prompt recognition and advice to avoid over-exertion is mandatory. Routine diagnosis, specific therapy and prevention, await further technical advances.”

One of the first studies planned by Invest in ME at the centre of excellence in East Anglia will be on enteroviruses.  The Let's do it for ME campaign is helping to raise funds for this research, and we are pleased to able to announce today that we have just reached half-way mark to our initial funding target for the research strategy to begin. We are proud to be playing our part in helping Invest in ME charity to take this important work forward and we thank you and everyone taking part for your support.

Dr. Dowsett's funeral takes place on Friday, 29th June. Her family have asked that donations be made directly to the ME charity of choice in place of flowers. Cards may be sent to:

The Family of Betty Dowsett,
c/o The Cottenham Court Nursing Home
High Street
Cottenham
Cambridge
CB24 8SS (but do not send donations with your cards)

Please click  here for options to donate to Invest in ME for biomedical ME research.

Our sincere condolences go Dr. Dowsett's family and our grateful thanks to them for thinking of ME patients at this sad time.

Thank you also for your support.

The Team at Let's do it for ME.

Make ME Crafts

Make ME, Break M.E.

A new website, http://www.MakeMECrafts.com, features art, crafts and products made by M.E. sufferers and their family and friends, with profits being donated to 'Invest in ME' to help fund a UK M.E. centre of excellence for biomedical research and treatment.

Make ME's aim is to draw focus to the little things that people with this condition can accomplish, bit by bit, instead of the bigger things they can't; to shift attention to the positive ways that the bed-bound can still make a difference.

Being ill doesn't mean you have to stop being creative!

These courageous people are sending their lovingly created crafts out into a world they can't be part of, to raise awareness and fight for real and effective M.E. treatments.

Crafts on 'Make ME' are made and listed by sufferers at their own pace, as they complete them, with many sellers working on projects a little at a time, as and when they're able. Unlike in the working world, there is absolutely no rush - no pressure. There are no demands to perform or time-constraints within which something has to be finished, giving them the flexibility to manage activities around their health.

It's not about how fast you can do something, it's about how well you can do something. These people may be ill, but they certainly haven't lost their talent, their passion or their creativity. They just can't manage things on the same scale as healthy people. They may not be able to keep up with the break-neck pace of the world outside, but that doesn't mean they can't do something constructive; something worthwhile, bit by bit. To borrow a phrase from a well known supermarket: "Every little helps".

'Make ME' is about doing something rewarding for a good cause; allowing sufferers to find some purpose again and changing the way they're seen in the community. It's about showing people that underneath every broken shell is a real person trying to get out, to express themselves, to reclaim something of what they've lost and achieve some level of normality; to create and be a part of something wonderful in this world, as others are able to.

Arts and crafts have proven to be very therapeutic, offering catharsis to a great many people from all backgrounds. Making things creates a real sense of accomplishment - something that's very important for all of us to retain, especially if we're unable to achieve much in other areas of our lives.

'Make ME' was set up by sufferer Jon Watson. It was initially launched as a Facebook page, to centralise crafts being sold for 'Invest in ME', but having proven to be a hit the project now has its own website at http://www.makemecrafts.com

The 'Make ME' project is part of the 'Let's do itfor ME!' patient driven campaign supporting the pioneering M.E. charity 'Invest in ME' (Charity No. 1114035), who are leading the charge for invaluable translational biomedical research into M.E. They plan to open an M.E. centre of excellence right here in the UK, the first of its kind in Europe. With your help they hope to revolutionise the diagnosis, treatment and care of M.E. and raise awareness and understanding of this debilitating condition.

'Make ME' is expected to expand and grow as part of its natural development, with the possibility of fairs/shows/workshops/tutorials/meets/forums/blogs and much, much more in the future, all painstakingly managed around the fluctuating health of participants.

Their most recent campaign 'Hug ME' calls for handmade soft toys and cuddly things for sale, auction or donation to a young person with M.E. - to help bring a smile to a suffering child.

Let's support these incredible people 'doing it for ME', working not just to improve their own situation but that of many others suffering from this disease all around the world, bringing hope and pride to sufferers everywhere.

Buy some goods, tell your friends, donate materials or get involved!

All crafters are welcomed with open arms and open hearts. Seller registration and item listing is free, as long as you agree to donate a portion of your profits to 'Invest in ME'.

If you wish to donate crafts or materials, or feel you can contribute in some other way, please do get in touch with them via their website, or email admin@makemecrafts.com

They'd be grateful of any support you can provide.

See what's on offer, find out more, get inspired or sign up for their newsletter by hopping on over to http://www.makemecrafts.com

You can also find them on Facebook and Twitter!

http://www.facebook.com/MakeMECrafts

http://www.twitter.com/MakeMECrafts

TopCashback - Raise money for free.

TopCashBack is the UK's most generous cashback website and is recommended by Martin Lewis of MoneySavingExpert.  So if you buy on line this a great way of earning money for Let's do it for ME / Invest in ME's Biomedical Research Fund.  With really great offers and the highest percentages paid out each time you by online.

Over 3300 online merchants and it's completely free.

No Strings - No catches - No Spam.

Just 3 easy steps

Join for Free (Just a few simple details)

Buy online (Log in to your TopCashBack online account and start searching for the merchant or product)

Get Cash Back.

So please sign up for TopCashBack using the link below and TopCashBack will donate £10 to Invest in ME once you have reached £10 in your cash back account. You then have a choice you can receive all of the money in your account yourself or you opt to donate all or a percentage of the money you have accrued direct to Invest in ME (option available in your account)

Start earning money now by sign up here TopCashback for Invest in ME.

There will be a banner stating - You have been referred by ''IiME''

As they say it's a no brainer :o)

Peter's Kilimanjaro Challenge

Update:

£2,365.00 inc. gift aid raised so far by Peter's Kilimanjaro challenge and money still coming in, including £50 from Ed Milliband on the 11th July. Peter is doing well, although not back out walking he has been out jogging. More funds to be collected at Barnsley Football Club where Peter is the chaplain.

Despite it being very tough going Peter made it to within 400 metres of the summit before finally succumbing to altitude sickness, he was so disappointed. He is home safe and sound but still suffering from the altitude sickness. Thank you to everyone who sponsored him.

--------------

Once again our superhero Peter Amos (Paul Kayes' brother-in-law) is raising funds for Let's do it for ME / Invest in ME's Biomedical Research Fund.

This is what he wrote -

In my 65th year, the year of my retirement, I am setting myself my most severe challenge yet to raise money for Invest in M.E.

On 2nd June I set off from Heathrow, arriving at Kilimanjaro airport in the late evening of the same day. After travelling to the start of the Rongai route I begin the first 2000ft of ascent up the highest mountain in Africa, standing at 19,341ft. Day two sees us climbing a further 2400 and day 3 - 3100 ft. This is where altitude problems could provide serious problems, hence an easier day which sees us climb 1000ft and return to the campsite to aid the acclimatisation process. On Day 5 we climb 3200 ft and then walk around the mountain rim for one and a half hours to reach the actual peak. It will be your donations that drive me on when I feel I can go no further.

We descend to our camp site and then further to our final camp. On the last day we descend 5700 ft before returning to our hotel and then straight home.

Having trained hard in Snowdonia my feet are already severely battered. So a few prayers might be needed too.

Thank you so much for taking the time to read this. An even bigger thanks if you were willing to support such a very good cause.

Peter Amos.

Donations can be made through Peter's JustGiving page by clicking here

You can also text your donation

To: 70070 pakc65 £ amount

for example PAKC65 £5 to 70070

 At the training camp where Peter is picking up a few tips from Paul & Paul's dad Richard

Scott's Marvellous Scottish May Marathon for ME!

Scott Handcock

On a ridiculously hot day in Edinburgh last Sunday, 27th May, Scott Handcock ran 26 miles to complete his first ever marathon in 4 hours 47 minutes and 53 seconds!

In his first blog entry of the year in January, freelance writer / director / producer and "occasional voice-monkey", Scott explained why he was doing this in addition to his usual type of "Big Finish" production:

"I'm running for a friend of mine - Jac Rayner - who oddly, I've never met properly, but have worked with a lot over the last year. We're doing a lot to raise awareness (and hopefully money) for M.E. related charities over the coming year, particularly a new project - Let's Do It For ME - which is looking for much-needed funding.

"It's a condition that isn't commonly understood, which is one of the reasons I'm running. Obviously I want to raise money, but if people just go to look at my page and read about how M.E. affects people, and spread the word, that in itself is useful. So please, whilst you're here, click the link below and read about what I'm running for. And if you're able to donate, please do. Thanks. S x"

Huge thanks to Scott, his wonderful family and friends, and all those whose generous donations helped exceed his target by raising a total of £2,194 + £456 in Gift Aid!

In her blog, Jac wrote, "The money is wonderful, but the awareness he’s raised has been brilliant too – I know a lot of people can’t afford to donate (or keep on donating), but their understanding is just as appreciated. And as someone who hated running even back when I *could* run, I am in awe anyone who is prepared to put themselves through something like this anyway."

You may recognise some names from the list of sponsors, especially of you are a fan of Dr. Who ...

http://www.justgiving.com/scott-handcock

... and / or if you recall the announcement in March of another project that we are really excited about ..

Big Finish helps our Big Cause

A Big THANK YOU Scott and your sponsors for such sterling support!

Let's do it for ME!

NEWS! Clinical Autoimmunity Working Group

Building a future for research into ME

To raise awareness of ME, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME has joined with the Alison Hunter Memorial Foundation of Australia - in cooperation with Bond University and University of East Anglia - to establish a Clinical Autoimmunity Working Group which met in London on 30-31st May 2012.

The IiME proposal is based around using of existing and developed services and facilities to initiate an examination and research facility for ME - where proper diagnosis can be made and translational biomedical research can be established.

INTERNATIONAL SCIENTISTS EXPLORE AUTOIMMUNITY IN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME

Medical and scientific experts from around the world convened in London on 30 and 31 May to discuss recent scientific developments in understanding myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Co-Chair of the clinical autoimmunity working group for ME/CFS, public health physician Dr Don Staines stated ‘The recent discovery from researchers in Norway that an anti- CD20 B cell- depleting drug had a marked benefit in the treatment of ME/CFS has sent a clear message to scientists and medical practitioners around the world that this disease may have an autoimmune origin’.

While the clinicians who made the discovery, Dr Oystein Fluge and Dr Olav Mella and co-workers remain guarded in drawing unwarranted conclusions from the study published in PLoS late last year, further studies are now being planned in the hope of extending the study to a number of clinical sites and to increase the number of patients in the studies.

Dr Staines said ‘The findings of Drs Fluge and Mella and their co-workers are consistent with theories previously published that ME/CFS may be an autoimmune disease. Despite compelling evidence that this disease is linked epidemiologically to infection and the disorder possibly being a post-infection disturbance of the immune system, little funding has gone into studies of autoimmunity. This is clearly a multi-system illness which has been badly managed in terms of the research agenda.’

Experts who attended the meeting include Professor Noel Rose, Director of Autoimmune Disease Research at Johns Hopkins Hospital (USA), Professor Stephen Miller (USA), Dr Mario Delgado (Spain) and Professor Hugh Perry, the chairman of the UK Medical Research Council Neurosciences and Mental Health Board. Immunological discoveries which may serve to act as biomarkers for ME/CFS was presented by Dr Sonya Marshall-Gradisnik, Bond University, Australia.

PARTICIPANTS

Dr Amolak Bansal MD

Dr. James N Baraniuk MD

Dr Monica Carson PhD

Professor Simon Carding PhD

Dr Abhijit Chaudhuri MD PhD

Dr Mario Delgado PhD

Dr Øystein Fluge MD PhD

Dr Ian Gibson PhD

Dr Konstance Knox PhD

Dr Andreas Kogelnik MD PhD

Dr Richard Kwiatek MBBS FRACP

Professor Stephen D. Miller PhD

Dr Sonya Marshall-Gradisnik PhD

Professor Olav Mella MD PhD

Dame Bridget Ogilvie AC, DBE, FRS

Professor Hugh Perry PhD

Dr Daniel Peterson MD

Professor Noel Rose MD PhD

Dr Katherine Rowe MD MBBS FRACP MPH DipEd

Dr Rosamund Vallings MD

Professor Tom Wileman PhD

Alison Hunter Memorial Foundation chunter@ahmf.org +61 2 99586285

Invest in ME info@investinme.org 07759 349743

Click here for the full statement, media briefing, programme and updates on Invest in ME website.


Update: IiME Charity posted on Facebook:

"The Clinical Autoimmunity Working Group meeting would not have occurred without the vision and dedication of Chris Hunter and the Alison Hunter Memorial Foundation. This amazing woman has been instrumental in organising a raft of biomedical research opportunities and it has been a privilege to work with her and the AHMF"* ...  "Together we have been working for over 8 months to arrange this and we feel this will show great rewards in the future for pwme and their families. Professor Don Staines also especially needs to be thanked for working on this".

*  Alison Hunter's beautiful story - Forget ME Not - is in the Journal of IiME Volume 3 Issue 1 .

Update from IiMEC7
A compilation of documented immune system abnormalities in ME/CFS from 1983-2012 is included in an excelllent and comprehensive article in the Journal of IiME Volume 6 Issue 1 (June 2012 conference edition).  "The Immunological Basis of ME/CFS: what is already known?" - by Margaret Williams

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

 

LDIFME Bear Meets - Part 2

LDIFME Bear loves to get out and about and raise awareness of Myalgic Encephalomyelitis! He was spotted back in January boarding a train to London and we were left wondering how he'd cope in the big city. Well it turns out he's a very independent little bear.. in fact we're a little jealous back at LDIFME headquarters that he's been having such fun and meeting.. well we'll get to that in a minute.

Bronte Barbe

Some of you will know Jessica Daley (formerly Robinson) has been chaperoning Bear for us after they met backstage at Middlesbrough's 'Little Theatre' during her role as Snow White (see Part 1). She quickly took him under her wing and on a train back to London and it didn't take long before he was ready for his "close-up" once again.

After hearing about Jessica's time in the BBC1 programme 'Over The Rainbow' Bear was excited to meet some of the other Dorothy's who sang and danced their way into the final ten for the leading role in Andrew Lloyd Webber's West End production of 'The Wizard of Oz'. Bronte Barbe from Cheshire has qualities similar to Dorothy being a small-town girl determined to make her own way in life. Since her experience on the live shows Bronte has gone on to train at Mountview Academy honing her skills to increase her chances of making it big in showbiz – good luck Bronte!

Jenny Douglas

Edinburgh's Jenny Douglas studied Musical Theatre at Motherwell College in Scotland and was 18 when she became one of the final ten girls for Andrew Lloyd Webber's search for Dorothy. Although she made it through eight live shows before being voted out of the competition Jenny feels it was for the best and as a self-confessed rock-chick that she's much more suited to her current role of Meat in a National touring production of the Queen musical “We Will Rock You”.

Stephanie Fearon had her West End debut in ‘Whistle Down The Wind’ when she was 10 and has appeared in Channel 4 teen drama ‘As If’ and the BBC1 drama ‘Casualty’. Her biggest TV break, however, was the role of ‘Harriet’ ("Harry"), in the out of this world CITV programme ‘My Parents Are Aliens’.

Stephanie Fearon

The daughter of hit-makers, Phil Fearon, of the 1980s band Galaxy, and Dorothy Fearon, a member of 1990s chart-toppers Baby D Londoner Stephanie Fearon is a former Dorothy finalist with showbiz blood in her veins. Stephanie came fourth in the competition and landed a role in a revival of the Tony Award-winning production of Smokey Joe’s Café less than a month after leaving the show. She has also played ‘Dorothy’ in a production of the ‘The Wiz’ at the Milton Keynes Theatre as well as a touring production of 'The Wizard Of Oz'. October was the highlight of 2011 for Stephanie when she played Diana Morales in 'A Chorus Line' directed by Baayork Lee and played at the Tel Aviv Opera House, Israel.

Meeting Dorothy finalists Bronte, Jenny and Stephanie on what was dubbed a 'Dottie Reunion' night-out was a real treat for Bear but more was to come. He also got to meet talented young singer, actress and model Lucie Jones. Lucie is probably best known for being a 2009 X-Factor finalist but went on to star as Cosette in 'Les Miserables' and has also been signed by top London Modelling Agency Select Models and is currently the new face of Wonderbra’s ‘Full Effects’ campaign.

Lucie Jones

Interestingly, Lucie also starred as Gemma in two episodes of Doctor Who spin-off series 'The Sarah Jane Adventures'. Bear is now quite the Dr Who fan after meeting actresses Lisa Bowerman and Ayesha Antoine at Big Finish Productions last year following the recording of unique feature-length audio drama 'Many Happy Returns' a Dr Who spin-off starring Bernice Summerfield. The project was initiated by LDIFME planning group member Jac Rayner who has close connections with the character and first approached Big Finish about making a charity download late last year. Every penny made from the audio will go to Invest in ME. More details on the project can be found in our previous post. *The download is not due to be released until November - we will update you nearer the time!

A big thank you to Bronte, Jenny, Stephanie and Lucie for supporting Let's do it for ME! and of course to Jessica for getting us these great photos, looking after LDIFME bear for us and continuing to raise awareness of ME.

*News Just In: After a brief shortage LDIFME Bears are available for adoption once again via our shop – see them sporting two new t-shirt designs here.

Let's do it for ME!