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!