Showing posts with label Alison Hunter Memorial Foundation. Show all posts
Showing posts with label Alison Hunter Memorial Foundation. Show all posts

31 May 2012

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

11 March 2012

Rosa's Wristbands


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

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

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

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

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

Please order by emailing info@investinme.org

Thank you for buying them."

Many thanks and very best wishes to Rosa.

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

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

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

On 9th July Rosa said,

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

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

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

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

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

(for options to simply donate to the research now)