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!

The Big Sleep for M.E. has arrived!

The Big Sleep for M.E. has arrived - so start plumping those pillows now!

Start: 6/5/12 00:00:01 Finish: 12/5/12 23:59:59

The Big Sleep for M.E. was Julia Cottam’s idea to create a fun, easy and inclusive event to raise awareness and money for the UK Centre of Excellence for ME that would coincide with ME Awareness Week.

The event is extremely flexible. All you need to do is lie back, make yourself comfortable, and if you really want to - sleep; a sort of mass sleepathon. Anyone, anywhere can take part. You can take part for just a day or the whole week if you like. Why not wear some silly sleepwear or an outrageous nightcap, as Julia’s proudly modeling, to make it even more fun! Anything goes - from your everyday comfy PJs to something more ridiculous. It's entirely up to you. And because this event is about fundraising and awareness you can do either or both. There are even group fundraising pages set up to make it even easier.

The Big Sleep for M.E. was thought up to take into account the fact that the illness restricts many sufferers to spending a lot of time lying down and in bed - some are totally bedbound; with the idea to turn this into something positive for our cause. The wonderful thing about this event is that for those ‘willing wellies’, healthy supporters, out there you’ve never had a better excuse to put your feet up and have a lie down knowing it’s all for a good cause! Those that are bedbound through this illness can also join in the fun for a change!

The response to this event has been very positive. As one ME sufferer said, ‘…. finally an event that I don't have to say no to!’ It has particularly struck a chord with those that are severe. And there are several severe sufferers fundraising either individually http://www.justgiving.com/thecagedbird or on The Big Sleep for M.E. JustGiving group page

http://www.justgiving.com/thebigsleepforme with more taking part for just awareness.

There have also been some unexpected and delightful deviations to the event with pets now joining up. Bubble and Squeak, two eighteen year old cats, have their own fundraising page http://www.justgiving.com/Squeak-and-Bubble-Cats, and the tortoises Hector and Hamish are helping out Ruth Gilchrist on her page http://www.justgiving.com/Ruth-Gilchrist. Kaiser Bill and Thomas are now team members of The Big Sleep for ME group fundraising page http://www.justgiving.com/thebigsleepforme. Kaiser Bill being the feline representative and Thomas the canine; although if they actually met in up in real life there could be some diplomatic differences.

There are also sleepover parties taking place in aid of The Big Sleep.

As you can see there are so many ways to join in. And the wonderful thing about this event is that healthy supporters and sufferers can all come together to do something positive for M.E. So far there are people from all over the UK, America, Italy and Sweden that have signed up.

If you’re interested to find out more go to the website www.thebigsleepforme.com or visit the Facebook page www.facebook/TheBigSleepforME, or email thebigsleepforme@btinternet.com.

If you’re unable to take part but would like to show your support you can give a donation either by going to the JustGiving pages mentioned or by texting BSME99 to 70070 with the amount you would like to give (for example BSME99 £5 to 70070).

With thanks to Julia for all her hard work developing and launching this inclusive and positive venture and to everyone taking part. We can all make a difference to M.E!

Carmel's New M.E Awareness Store

A selection of M.E Awareness t-shirts.

Carmel Hillary first opened her Cafepress M.E Awareness store in support of Let's do it for ME and Invest in ME charity in November last year. Her t-shirt design "M.E. - it's not for wimps", along with a wide range of other designs, proved popular and raised funds for biomedical ME research.

Now Carmel has opened up a second M.E Awareness store with many of the same popular designs but this time with Spreadshirt.co.uk where UK shipping costs are more favourable. The New Spreadshirt M.E Awareness Store is in addition to the first which will remain open offering customers the widest choice in available products.

Certain products are only available through the Cafepress M.E Awareness store, this includes the pyjamas, phone covers, magnets and bumper stickers shown here - which have also proved popular and have been successful in attracting attention to our cause.

Carmel's stores are also selling the Global Action International Awareness Day t-shirts for the UK, with kind permission from event organiser Joni Comstock. For more information on the International Awareness Day campaign or to purchase a Global Action t-shirt in the US visit the Global Action May 12th website.

As with the official Let's do it for ME Standard Spreadshirt Shop and Designer Spreadshirt Shop (where you can re-size our designs and add your own images and slogans) all profits from both of Carmel's stores go directly to Invest in ME and towards biomedical ME research in Norwich. With thanks to Carmel for all her hard work in setting up and running her M.E Awareness stores despite being very unwell herself and for her support of Invest in ME charity and the Let's do it for ME campaign.

There's really never been a better time to get some M.E Awareness clobber in your wardrobe
 - Let's do it for ME!

Your Photos for Mosaic by 30th April

Invest in ME plans to create a mosaic of photographs of those who have contributed to our campaign so far to make into a full page in the 7th Invest in ME Conference Journal with an article about Let's do it for ME.  Thanks to those who have sent in their photos already.

If you would like to be included in the mosaic, please send your photo by 30th April to:

fundraising4me@gmail.com

For previous Invest in ME Conference Journals, please click here.

About the Conference - IIMEC7

Invest in ME charity has held an international conference on biomedical ME/CFS research every year since 2006. This year's venue is the magnificent Lecture Theatre of One Birdcage Walk, in the heart of Westminster, London on 1st June.

The conference will appeal to healthcare professionals, including doctors, nurses, paediatricians, occupational therapists, researchers, ME/CFS support groups, people with ME/CFS and those working in social services, educational support and the media.

The conference provides an opportunity to network with other researchers, healthcare professionals and patient groups/charities, and for people within government, health departments, social services and education to be able to be informed of the true nature of ME/CFS and of the current status of diagnosis, treatment and current/future biomedical research possibilities. Maximum 6 point CPD-accreditation is available to those registering in the professional category.

The conference is a ticket-only event - please see the Invest in ME website for full details.

A conference DVD will be available in due course following the event. 

Don't forget that if you would like to be included in the mosaic of photos for the conference journal, please send your photo by 30th April at the latest to:

fundraising4me@gmail.com

Thank-you for your support.

Let's do it for ME!

New designs in our Spreadshirt Shop

We have a new design now available in our Designer Spreadshirt Shop  Our new design is clearer about what Let's do it for ME stands for and includes Invest in ME's charity number and our new web url.

The design has been added in two colour-ways to the designs already available in our Designer Shop where you can size and place our designs, and other free designs from Spreadshirt, onto the products you like yourself and customize them to suit your needs. *You can also upload your own photos and designs

The new designs will also be added to our standard Spreadshirt shop soon - http://ldifme.spreadshirt.co.uk/

All funds from both our shops go direct to Invest in ME and towards biomedical research and the Norwich centre. In our designer shop IiME receive 20% commission on every item sold, in our standard shop £1 is generated on accessories and children's items and £2 from all adult items sold - as stated in the description per item.

So get designing and - Let's do it for ME!

Update on Teigan's Run for Mum



Teigan says Invest in ME!

Ten-year old Teigan ran to raise funds for biomedical ME research in The Grand Hotel Mini Mile Race in Brighton on 15th April.

She said, 

"I want to raise all I can for Invest in ME (IiME)". 

This is Teigan's story:

"I am 10 years old, since I was 5 my mum has suffered with M.E and other illnesses. I want to raise money to help gain research in the UK which may help get treatment and maybe even one day, a cure.



"LET'S DO IT FOR ME!"

 "It breaks my heart to see my mum suffering and in pain. We dont get to go out often like my friends do, but my mum does her best. I know it upsets her as I have seen her wiping away tears. When we do manage a day out, mum has to use a wheelchair, even then it tires her out for days, she catches viruses very easily too. All I want is my well mum back.  It upsets me to know children suffer this cruel illness. I know how lucky I am that I don't have it, so I will do what I can do to help not just my mum but children and adults suffering too.

 
 

"Thank you for reading my story"



  Thank you for reading my story -
please DONATE what you can." 



"Pease donate what you can"













Running for Mum and everyone with M.E

 
Teigan completed the race in under 10 minutes (9:43) and plans to train in preparation to take part again next year.

As very proud Mum Claire says,

"What a good sport!"

Meanwhile, Teigan is taking part in a dance competition this weekend. We hope she has a wonderful time and also wish her the best of luck with her SATS in May.




"Thank you for sponsoring M.E"

The Grand Hotel Mini Mile Races are age-related races - open to 7 - 17 year olds - staged along the seafront on the morning of The Brighton Marathon, covering a one mile distance. 2,000 children took part this year and Teigan is one of three children selected for a promotional video for the race.

Teigan is raising funds for research focussing on virology and immunology, aiming to find effective treatments for ME as rapidly as possible, with the potential to benefit many thousands of children and adults throughout the UK and beyond.  Please click Page tabs for FAQs and Details.

Teigan's Just Giving fundraising page remains open for donations - she has raised over £800 including Gift Aid so far - many thanks to all Teigan's sponsors and a big THANK YOU from us all to this little star!

Teigan's Just Giving Fundraising Page

 


Until next time ....

 
(The above post is an update of "Teigan's Run for Mum" posted on 18th March)





Sit for ME!



Joyce Barrass and friend

 Joyce Barrass says:

"Now that I've got a dog-shaped hole in my house since I lost my sheltie in 2009, I often dogsit by looking after friends' dogs while they are on hols or courses etc. This little lass's owners, ex-colleagues of mine, have decided that cos I'm saving them kennel fees, they will donate to Invest in ME for each time I look after her! She's already booked in here quite a few times over the coming year. I love all dogs so this is a win-win situation, even on some of my worst crashed days.

"Luckily, most of the dogs I usually look after are old, so a run sniffing round my long back garden chasing toys is all the exercise they want these days. Occasionally, I've looked after younger dogs and then my mum stays over to help, walk etc. I know that frustration of being too sick to go far, or go out at all. With my own dog, I used to get round the corner to the local woods on good days and I was also blessed that some of the friends I now dogsit for also returned the favour on my immobile days."

What a great idea for those too ill to care full-time for a dog of their own, and what a thoughtful gesture by Joyce's friends, who can add 25% to their donation at no extra cost with Gift Aid.

If you're thinking the name sounds familiar, Joyce and her sponsors also generously donated her 50th birthday gifts to Invest in ME in October, raising over £900 towards the biomedical research planned at the UK Centre - see Joyce's 50th Birthday Gift for ME!

Many thanks to Joyce and her supporters and a tickle behind the ear for all her 4-legged friends!

If you'd like us to post about your awareness and fundraising activities for Invest in ME, please drop us a line and photo(s) to: fundraising4me@gmail.com

You can print off the campaign leaflet to show friends what your raising funds for.

Together, we can do this - Let's do it for ME!

Tara Mawer's Video

Tara at Nottingham Capital FM Radio

Hi my name is Tara Mawer and I fell ill with M.E. in November 2010, when I was just 10 years old – I’m 12 now.

I haven’t been able to go to any kind of school, since I first got it, because it started to just push me back. My parents decided to de-register me from school, and now I get home-schooled by my mum.

M.E has changed my life, quite a lot. I try not to complain too much though, because I’m getting things which are helping me feel a bit better, whether it's medicine or treatment. I have nearly every symptom, except for they all come at different times, I get: -

· chronic pain - back ache and joint point (I take Amitriptyline to help with the pain and muscle spasms)

· headaches (But I found out today I’m long-sighted so maybe when I’m doing stuff I need to focus on, my headaches will be a little better from the glasses I’m getting.)

· dizziness (blacking out, or just faded vision) – this may be because my blood pressure goes very low when I stand up and my heart rate is faster.

· regular sore throats and swollen glands

· nausea (I take Cyclizine which is an anti-sickness medicine to try and help make this not too bad)

· noise sensitivity (I wear ear defenders or stay in my room when mum hoovers). Which is also why I couldn’t manage school.

· & fatigue.

Those are just a few/main symptoms there are.

Before M.E./C.F.S I went to tap dance, modern dance and musical theatre. And when they were on I also went to after school dance clubs.

I have to use a wheelchair for when I go out anywhere with a lot of walking, because walking too much tires me out and can cause me to crash. It also can give me back & joint pain. Whenever I think I can walk, I try not to use it, because if I take a few rests sometimes, it’ll be okay, we’ve also got a blue badge, which means I can park a lot closer to places and its easier for me because I don’t have to walk as much.

But, my friends understand my illness so they’re okay with me taking breaks and they try their best. I made a stop motion video about M.E to explain a bit more to them, because a lot of people are calling M.E, the illness which makes me tired, which is quite annoying.

My M.E./C.F.S can also have illnesses with it, I have; Hypertonicity, Hypermobility, Restless Leg Syndrome, IBS, Orthostatic Intolerance/POTS and Vitamin D deficiency, and apparently so do many people with M.E.

I have met some people who also have M.E./C.F.S. usually from the hospital , or my mums M.E forum friends children. Since M.E I’ve just realized how much I love editing videos, and I got a proper editing software for Christmas. I’m getting a better quality camera soon as, and I have a tripod which makes things much easier.

Tara Mawer

(My mum and dad are doing a sponsored weight loss to raise funds for Invest in ME. so if you would like to spread the word for them to get more sponsorship that would be great.) The links are:

http://www.justgiving.com/TonksWeightLossChallenge

or Text

XPDL95 £* (*insert donation amount) to 70070

Invest in ME has as its objectives to change how Myalgic Encephalomyelitis (ME) is perceived and treated in the press, by health departments and by healthcare professionals. We aim to do this by raising funding for biomedical research and improving education about the disease.

Invest in ME - Charity Registration No. 1114035

Tara's M.E Video

Many thanks and well done to Tara!

Please take a few minutes to watch Tara's great stop motion video and share the link widely.

Thank you for your support.

Team Let's do it for ME!

RIP Emily Collingridge - Emily's Appeal

Rest in Peace Emily Rose

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

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

Emily's Appeal (written 2010-2011)

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

My name is Emily. I developed the neurological condition Myalgic

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

30. I still have ME.

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

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

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

disease.

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

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

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

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

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

so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme.

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

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

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

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

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

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

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

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

My days and nights are filled with restless sleep interspersed with

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

well as experiencing transient paralysis and at times being blind and

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

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

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

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

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

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

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

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

levels so high that I hallucinate.

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

hospitals have shown such lack of consideration for the special needs

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

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

invariably causes further deterioration.

Many days I feel utter despair.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

appropriate support for those suffering from it. This is something

that must change.

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

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

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

others:

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

us all real reason to hope."

By Emily Collingridge 2010-2011

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

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

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

Thank you for your support.

Team "Let's do it for ME"

*Lost Voices is available from Invest in ME.

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

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

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

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

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