Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis

8th August 2013 marks the first Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis.  This idea was conceived by Diane, mother and carer of Lili, and has been launched by the 25 percent M.E. Group.   Diane's account of Lili's story may be read on Invest in ME website (click here).  25% of people with ME fall into the range of severe and very severely ill.  8th August was chosen as this is the birthday of Sophia Mirza, who died from very severe M.E.  in 2005 aged 32 and would have celebrated her 40th birthday this year.  Sophia was among those who paid the ultimate price for medical mistreatment as consequence of the medical ignorance and psychiatric dogma that causes suffering to this day, and which the Invest in ME strategy for biomedical ME research and education of the healthcare profession aims to address, and this is why they have our full support for the work they are doing, as it will help bring an end to unnecessary suffering and untimely deaths.   Professor Malcom Hooper and Margaret Williams wrote in a recent statement:  "The charity Invest in ME has provided a truly remarkable opportunity to address one of the biggest medical scandals in history and to remove what in 2007 Alex Fergusson, Presiding Officer (Speaker) of the Scottish Parliament, referred to as “the cold grip of psychiatry” on myalgic encephalomyelitis (ME), which he said was “still far too deeply rooted in the world of ME” (http://www.meactionuk.org.uk/Defiance_of_Science.htm)." (click here).

In the press release announcing the launch of our campaign two years ago, we paid tribute to Sophia and Lynn Gilderdale.  The privately commissioned specialist neuropathology post-mortem examinations on both young women showed evidence of damage that warrants the World Health Organisation classfication as a neurological disease of the correctly named benign myalgic encephalomyelitis - benign as it is not fatal within a short time - hence the many years of unnecessary suffering that can ensue as a result of medical misunderstanding and mismanagement.  Just one such death is one too many, but there have been many more and the suffering of countless others is ongoing.  Behind the fun of our campaign lies a very serious purpose.  We aim to educate medical students, doctors and other health professionals about the facts of this disease and what is known from the ongoing research, so that they may be in a better position to treat patients correctly and at least do no harm if they are unable to prescribe effective treatments.  The National Institute of Clinical Excellence guideline for ME is in urgent need of updating and particularly with regard to severe ME.

Our campaign was inspired by a report on the proposal by Invest in ME to establish a patient examination and research facility in Norwich, which would be the first of its kind in UK/Europe and could develop into a centre of excellence.  Kerry has very severe ME and was featured in that report.  She had been a text friend of Lynn's.  Kerry is also pictured in our awareness posters, designed painstakingly over several months by another sufferer of severe ME.  Members of the Collingridge family's Facebook group had also been sent Emily's Appeal, with a request to repost it to raise awareness.  Invest in ME has close links with the Alison Hunter Memorial Foundation in Australia.  Alison was another young life lost to this disease.   My nature has always been that if I see a problem, what can I do to help solve it?  I can offer a listening ear, sympathy, empathy, but what can I actually do to help?  My instinct was that the most useful action I could take under the circumstances would be to help Invest in ME to bring their proposal to fruition by helping to raise awareness and funds for the research.  If the Norwich Centre helped Kerry, that would be reward enough, but I know that it stands to help others in her region, as well as tens of thousands across UK and ultimately millions around the world, as the work in Norwich is part of an international drive by highly skilled and dedicated researchers working together with patients to nail this dreadful disease once and for all.

So, with the approval of the lovely folk at Invest in ME and the help of my like-minded Facebook friends, Let's do it for ME was launched in July 2011.  We could say the rest is history but we are not done yet and this is about the future.  Ill as we are, from our homes and beds, and with the help of our well friends and families, knowledgeable and experienced clinicians, scientists, and researchers, we will fight the good fight until we have achieved proper recognition and understanding of myalgic encephalomyelitis as a serious and life threatening disease (as now recognised by the FDA) across the range from mild to very severe, most importantly to the medical profession, and also to the media and wider public.  There is no more constructive way to honour the memories of those we have lost from our global community and no better way to forge hope for the future for those suffering now and those to come.

The situation of severely ill bedbound ME patients was discussed by some of the presenters at the 2013 IiME conference (IIMEC8) and these extemporaneous notes on severe ME may be found on Invest in ME website (click here) and a link to a small survey on caring for seriously ill ME patients (click here).

Dr Peterson from US said that the healthcare system is not geared for these types of patients. In the past these patients would have been cared for in hospitals with alimentary treatments but now the cost is prohibitive.

Dr Staines from Australia said the situation is bizarre as normally the most severe patients in any illness get most attention and are hospitalized but in ME the situation seems to be reverse.

The Australian Marshall-Gradisnik research group has included severe ME patients in their studies but have not found any differences in the immune system parameters in groups rated according to severity.

Dr Staines pointed out that ME is however a multisystem illness and the immune system is only one part of it.

The Griffiths University, where the Marshall-Gradisnik group is located, also has beds for patients so that they can include severely ill patients in their studies as well as monitor patients for 24 hours or more.

This is something that should be possible elsewhere too.

Doctors simply do not know what to do with these patients so there is an urgent need for education.

After the conference Dr Bansal from UK added the following especially for Invest in ME for a forthcoming news article (which subsequently was not used), explaining severe ME in the following way -

“While it is presently very difficult for modern medicine to fully explain all severe ME symptoms, disordered neural function within the brain and spinal cord would come close.

How this occurs is unknown but there are counterparts in certain newly described autoimmune conditions and viral infections of the nervous system.

In addition to a direct stimulation of neurones in different parts of the brain and spinal cord there is also an impaired filtering function of the brain stem and a reduced threshold for neurones to fire off.

This allows external stimuli such as movement, light, sounds, touch and sometimes even worrying thoughts to produce widespread neuronal activation with ultimate excitotoxic damage to these cells.

The consequence is impaired activity of the brain generally but particularly the hypothalamus and prefrontal cortex leading to fatigue, disordered sleep, impaired memory, attention, faintness, palpitations, disordered respiration, temperature dysregulation etc.

Outwardly many patients appear well and routine blood and other investigations are normal.

Internally there are severe symptoms which, if unchecked, escalate leading ultimately to immobility and increasing pain and spasms in a proportion of patients.

Clearly a greater understanding of this highly disabling condition is required with a greater focus on disrupted immune and neural pathways and not just psychosocial factors as has previously been the case.”

An excellent report on the launch of this special day of Understanding & Remembrance Day for Severe Myalgic Encephalomyelitisby Gabby Nielk may be read on Pheonix Rising (click here).

Lost Voices from a hidden illness is a beautifully photographed book of accounts of by people with severe ME and their friends and family members, along with excellent information about ME.  The book was compiled for Invest in ME by Natalie Boulton, who later co-produced the film Voices from the Shadows.

Light a Candle in the Darkness of ME

Statement by Professor Malcolm Hooper and Margaret Williams

The UK Rituximab Trial for ME

Professor Malcolm Hooper         Margaret Williams

2nd August 2013

The charity Invest in ME has provided a truly remarkable opportunity to address one of the biggest medical scandals in history and to remove what in 2007 Alex Fergusson, Presiding Officer (Speaker) of the Scottish Parliament, referred to as “the cold grip of psychiatry” on myalgic encephalomyelitis (ME), which he said was “still far too deeply rooted in the world of ME” (http://www.meactionuk.org.uk/Defiance_of_Science.htm).

Now, however, despite the power and control of the psychiatric lobby, thanks to Invest in ME and the invaluable support of Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College, London, (world-renowned for his work in B cell immunology and as lead researcher in the clinical trials of rituximab for rheumatoid arthritis), the neuro-immune disease ME is at last about to enter the realm of mainstream medicine in the UK under the guidance of Professor Edwards himself.

Invest in ME are at the forefront of international biomedical research and have by sheer determination and effort managed to put things in place for a trial of rituximab to begin on ME patients in the UK. They recognise the urgency of the situation and know that many ME patients do not have the luxury of time. The charity already has the facilities in place, including suitably experienced researchers (Professor Jo Cambridge is now principal researcher at UCL, and the ME trial will involve the same team working under her that carried out the rituximab research in RA).

The Clinical Trials Unit at UCL is already working on the protocol, and Invest in ME have agreed with Professor Edwards that the protocol will be externally reviewed even though the UCL team will make sure it is cast-iron by their own internal reviewers.

Invest in ME have been told this trial could start relatively quickly if the charity had funds available. Such an opportunity must not be lost. However, this will not happen without substantial funding.

We therefore ask everyone who is able to do so to donate whatever they can afford, in order that the UK rituximab trial can get under way as quickly as possible whilst the excellent facilities and committed staff at UCL and the active support of Professor Edwards remain available, so that ME can finally be recognised as the devastating multi-system neuro-immune disease that it is and – most importantly -- so that sufferers may at last have some hope of alleviation of their suffering.

Invest in ME have assured us that all donations to the rituximab fund will sit in a separate account which is totally ring-fenced, and should the trial not proceed, the following statement on the IiME website will be honoured –

What Happens With These Funds If The Project Does Not Go Ahead:
If the rituximab project does not go ahead for some reason then the funds raised will be transferred to the IiME Biomedical Research Fund to fund other biomedical research projects which are attached to our proposal for an examination and research facility based in Norwich Research park in Norfolk, UK. These funds will only be used for biomedical research into ME.
- http://www.investinme.org/IIME%20Statement%201306-01-faq.htm

A UK trial of rituximab is essential to move ME out of the realm of psychiatric dogma and into the realm of medical reality.

Information on how to donate can be found on the Invest in ME website:www.investinme.org

........................................................................................

Invest in ME wrote in their Facebook group: Thank you Margaret Williams and Professor Hooper.  Lovely endorsement from those to whom the ME community will be eternally indebted. 

From the team at LDIFME: Our grateful thanks to Margaret Williams and Professor Hooper for their unwavering advocacy for people with ME and for this clear statement of support.

Research Team for Rituximab Study - Statements By Professor Jonathan Edwards and Invest in ME

UK rituximab Trial - Statements By Professor Jonathan Edwards and Invest in ME - July 2013

www.investinme.org

Professor Jo Edwards My interest in ME/CFS was sparked when I was invited, unexpectedly, by IiME to the IiMEC8 Conference in May. The meeting was impressive: not just professional science, but at a high level. I was particularly impressed that negative findings were given adequate weight. It became clear to me that there was a community committed to identifying and encouraging the very best research in a difficult and neglected field. I was aware of the study by Fluge and Mella, using rituximab. I had not been surprised to see some patients respond, but the type of response, which was similar to what we had found in rheumatoid arthritis fifteen years ago, caught my attention. In fact, the situation seemed very reminiscent of the time when we first started to get results with targeted therapy in rheumatoid arthritis. We had the benefit of more immunological clues then, but on the other hand, the experience we have gained over the last decade now makes things easier in other ways. My limited understanding of ME/CFS is that, like arthritis, it is probably several diseases with similar symptoms. Most colleagues who specialise in ME/CFS seem to agree. What the Fluge/Mella study suggests is that perhaps half of those suffering from these symptoms may have a B cell-dependent autoimmune disease. A recent study by Dr Amolak Bansal and colleagues also suggests that B cells may be functioning abnormally in a significant proportion of people with ME/CFS. To me, a key feature of this approach, unlike chasing one particular virus or gene, is that, if confirmed, it will provide a broad base for understanding disease mechanisms. Even if rituximab is a cumbersome treatment in the short term its use may not only help a good proportion of patients directly but also begin to show us how to divide ME/CFS into different groups. So it may be useful even for those whose disease does not respond because once separated out from B cell-dependent disease the role of other factors such as NK cell function or cerebral blood flow may become clear. Looking at the research directions currently being pursued in ME/CFS, I am in no doubt that the usage of rituximab is one of the most promising. There is clearly enthusiasm for further trials. However, rituximab is not an easy drug to use and many doctors do not feel confident with using it. This may explain why studies have been slow to gain momentum outside Norway. Safe and effective usage requires understanding of B cell life history and function. Each condition has to be considered differently, especially in terms of when treatment is repeated. But with experience its use is very effective and probably as safe as most drugs. After the IiME Conference I began thinking about my personal experience of patients and friends with ME/CFS. I was sent a copy of ‘Lost Voices ‘ by IiME, which made me think more. It struck me that, whether or not results are positive, further trials of rituximab for ME/CFS should be encouraged not only because impact on life for those affected can be so severe but also because further trials could give clues to disease mechanism. I am retired and would not be personally involved but have suggested to IiME that I would be happy to advise and to encourage others to set up a trial. My feeling is that a trial should be carried out somewhere with detailed experience in use of rituximab in autoimmune conditions. The UCL service set up when we started treating rheumatoid arthritis, lupus and a range of other conditions has the most extensive experience. There is laboratory expertise in B cell immunology under Dr Jo Cambridge. UCL also has a new Clinical Trials Research Facility with staff appointed to manage trials of this sort. Importantly, there is enthusiasm amongst local teams for a rituximab ME/CFS trial. I have suggested to IiME that this would be the ideal centre for such a trial, to be set up in collaboration with clinicians with expertise in ME/CFS from around London, and in particular Dr Bansal. IiME have accepted this and this is the planned and preferred research base for this trial. Clinical trials are costly. The trial planned in Norway to confirm the results from Fluge and Mella’s initial trial will cost something like £1-2M pounds. I think it would be most sensible to set up a smaller scale trial initially in the UK with a focus on trying to identify which patients are most likely to benefit. A trial treating about 30 patients, giving useful scientific information should hopefully be feasible for around £3-400,000. Trial design will require careful thought and some further preliminary laboratory work is likely to be needed before it is clear what design would be optimal. Nevertheless, I am optimistic that a trial could be set up without major delay if funds can be raised. If the role of B cells in at least some ME/CFS, suggested by Fluge and Mella’s study, can be confirmed I think there is a genuine chance of getting to grips with the mechanism of the disease. From there on things can only get easier. Statement from Invest in ME: The statement above from Professor Edwards is an astonishing opportunity for those patients with ME and their families. To have somebody of Professor Edwards' standing produce such a statement, after agreeing to advise the charity following the IIMEC8 conference, justifies completely the conference theme of Mainstreaming ME Research. This is a potential breakthrough for state-of-the-art biomedical research into ME. We believe this study would add great value to other similar research being performed elsewhere. It would also put the UK into the forefront of ME research. There is no greater expert able to advise on a trial of rituximab than Professor Edwards who formally established the validity of B cell depletion in autoimmune disorders via his groundbreaking rituximab trials. At the Biomedical Research into ME Collaborative meeting (BRMEC) organised by Invest in ME and the Alison Hunter Memorial Foundation Dr Jo Cambridge from UCL was invited by the charity to attend and present to the 40 researchers from nine countries gathered in London for the meeting. We felt it important to get the best advice possible to help with this area of ME research. Dr Cambridge added an enormous amount to the meeting – followed by a sincere and positive approach to progressing research. UCL, as Professor Edwards has explained, has first-class facilities and we believe this opportunity is unique in the UK. If the UK patient community wish to have a rituximab study then this is as good as it gets. With the clinical team and Dr Cambridge at UCL performing this work, and with Professor Edwards as advisor, we are sure that a huge leap in understanding ME will be possible. IiME have managed to work with the experts to set up this possibility. As Professor Edwards states “a trial could be set up without major delay if funds can be raised”. Our fundraising campaign now must begin in earnest. We invite everyone to get behind this UK rituximab study and support us. We welcome contributions from other organisations and companies and individuals. The quality of the researchers and the facilities is beyond doubt. IiME will contact other organisations to invite them to donate to this cause. One organisation has already indicated it will support a rituximab trial and we have had a pledge from another organisation to help.  We now have the researchers willing to perform this trial in the UK. The quality of the researchers and the facilities at their disposal place the capability of the UCL team to perform this trial beyond doubt. What Next? There is enthusiasm for setting up a study at UCL. UCL can take this forward in collaboration with Dr Bansal and with close liaison, including visits, with Bergen. This has been agreed. A meeting has been arranged for Professor Edwards to visit Bergen to discuss with Dr Fluge. Further trips by the UCL team would be a possibility and will be arranged by the charity. We welcome this as this will undoubtedly help both the Norwegian and the UK studies. We need to raise funding for this study so we urge all our supporters, and others who wish to have a UK rituximab trial or wish to advance biomedical research into ME, to raise awareness and interest from as many sources as possible and support us in this venture. This UK rituximab study has been initiated by IiME and the UCL staff who were at our conference and BRMEC research meeting. The best research team possible to undertake this trial is able to perform this. We need now simply to fund this. Please support us in this venture. ........................................................................................................ This is all wonderful news and our immensely grateful thanks go to Professor Edwards and Invest in ME, Dr Cambridge and the UCL team, Dr Bansal, Professor Mella, and all involved in planning this important research.  Now all we have to do is help fund it so - Let's do it for ME!     UPDATE from IiME: "Thanks to everyone supporting us with this.  We have had a pledge from another organisation to help.  More details later.  We will be contacting other organisations and support groups to ask for their support for our project".   Professor Edwards: " IiME take the credit for having knocked the right heads together and got them thinking of getting something up and running - pretty impressive to my mind, because there are all sorts of reasons why those people might choose some easier things to think about! So now what we need is for everyone to do what they can.  Dr Shepherd has indicated his enthusiasm for doing what he can. If we can get the MRC interested now or later that will help" Dr. Charles Shephered: "I hope this is clear: Invest in ME should be congratulated for what they have done here." To donate to the IiME UK Rituximab Research Fund - click here

IIMEC8 DVD now ready for delivery!

2013 Conference DVD

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

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

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

Includes Article on LDIFME

Annabel, who has ME, said of her husband:

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

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

In their the July newsletter, Invest in ME wrote:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Click here to order the order 2013 conference DVD.

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

Click here to subscribe to the Invest in ME newsletter.

Happy Birthday To Us!

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

BIG THANKS to Krystal and Wobser for our birthday photo! 

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

UEA foundation project fully funded

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

Our Global Community

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

BIG THANKS TO ALL 

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

BIG THANKS BIG FINISH

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

BIG THANKS BARNABY

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

BIG THANKS  MAMA CHILL

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

BIG THANKS JON AND TEAM

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

BIG THANKS ROSA AND FAMILY

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

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

BIG THANKS HARRI AND ALL WHO SUPPORT THE YOUNG ONES

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

BIG THANKS ALL AT UEA 

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

"Neuroimmune disease is very serious" 

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

BIG THANKS PROFESSOR JONATHAN EDWARDS

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

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

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

*BIRTHDAY CELEBRATIONS NEWS*

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

To donate from £1 text the code ODOP99  to 70070 

or donate from £2 via the 

One Day One Pound JustGiving Page 

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

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

Let's do it for ME!

Announcing a Matching Donation Period

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

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

To donate from £1 text the code ODOP99  to 70070 

or donate from £2 via the 

One Day One Pound JustGiving Page 

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

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

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

Carers' Group for ME

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

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

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

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

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

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

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

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

Professor Jonathan Edwards to Advise IIME on Rituximab Study!

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

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

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

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

Bacs Press Release:

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

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

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

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

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

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

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

Free Delivery from Spreadshirt Today 21st June!

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

no minimum order value

only valid on 21 June 2013 

Voucher code: TDAY2013 

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

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

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

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

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

Happy Shopping - thank you for your support!

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

http://ldifme.org/shop/