29 July 2013

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.

27 July 2013

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.

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. 

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.  

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. 

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” 

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. 

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!!”


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

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.  


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!


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 

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!

26 July 2013

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 

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!

14 July 2013

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! 

1 July 2013

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 t
eam at Let's do it for ME!