Success of Our Campaign Makes News!

Daniel Vipond & Prof. Simon Carding

The following press release was published today by the University of East Anglia (UEA) and the Institute of Food Research (IFR). The crowdsourcing refers to Let´s do it for ME! Our campaign was launched by three people with severe myalgic encephalomyelitis from our homes/beds in July 2011 to raise awareness of the proposal by the charity Invest in ME to establish a centre of excellence for ME in East Anglia and to raise funds for the research. Our initial fundraising target of £100,000 fully funds the foundation research project described below and Invest in ME is now aiming to double that to enable the research strategy to develop. We are also helping Invest in ME to raise funds for a UK clinical treatment trial of rituximab via a separate fund. See our website for the wide variety of ways to help us raise awareness and these vital funds. Meanwhile, can you spot Professor LDIME Bear in the picture below keeping an eye on the work?  Huge thanks to all involved - Let´s do it for ME!

Crowdsourcing raises vital funds for ME research

31 MARCH, 2014

Patients living with myalgic encephalomyelitis (ME) have raised £100,000 to allow new research into the misunderstood condition to take place at the Institute of Food Research and the University of East Anglia.

Under the guidance of Invest in ME, a national charity pushing for better education and high-quality biomedical research into ME, sufferers and their supporters spent two years raising the money to fund a dedicated PhD studentship at the university, thought to be the first time a community of patients has directly funded research.

Affecting an estimated 250,000 people in Britain, ME – or chronic fatigue syndrome – causes persistent exhaustion which affects everyday life and doesn’t go away with sleep or rest.

However the cause of ME is still unknown and there is a lack of dedicated services for those with the condition. The partnership between UEA, IFR and Invest in ME has been established with the aim of making strides in understanding and treating ME.

Daniel Vipond & Prof. Simon Carding

Daniel Vipond, a former undergraduate student at UEA, won the three-year scholarship which started at the end of 2013. Based at the Institute of Food Research on the Norwich Research Park and working under the supervision of Prof Simon Carding at IFR and Prof Tom Wileman at UEA, Daniel will dedicate his time investigating the possible causes of ME, laying the foundations for further research into how to then treat the condition.

He will be researching the proposed condition ‘leaky gut syndrome’ – where the immune system reacts to germs and toxins which enter the bloodstream because of a porous or ‘leaky’ bowel – thought to be a possible cause of a number of conditions.

Daniel said: “Gut health is currently a popular area of research, but as yet no research has been done in to how it might cause ME. There is existing evidence suggesting that leaky gut syndrome is a very likely influence and if my research can show a significant proportion of ME patients do have this condition, it will pave the way for further research and even potential treatments.”

Leading scientists, including Dr Ian Lipkin from the Center for Infection and Immunity at Columbia University, have stated recently that they believe there is a strong link between leaky gut syndrome and ME. But while there are plans for other organisations to investigate this link in the future, UEA, IFR and TGAC are leading the international effort to further understand the causes.

As a collaboration between UEA, IFR and the Norwich Research Park, the project will benefit from the wealth of expertise and facilities available at the world-leading cluster of organisations which also includes The Genome Analysis Centre, John Innes Centre and the Norfolk and Norwich University Hospital.

Dr Ian Gibson, former Dean of Biological Sciences at UEA and the charity’s advisor on the project said: “The formation of a research programme on ME at UEA is a recognition of the campaign by the charity Invest in ME and the growing interest in the medical world to understand this complex illness which is quite frequent in Norfolk and across the world. The approach to tackling the problem in the portals of the Norwich Research Park is most welcome and we look forward to their work being presented at the coming Invest in ME International conference in London”.

Richard Simpson from Invest in ME said this flagship project is a first for the charity: “This research is absolutely essential as ME causes significant suffering for so many people. It is a world-leading project and the team across the Norwich Research Park has the facilities available to help resolve this disease, or at least begin to contribute to the understanding.

“The funds were raised by ME patients from across the UK and globally, which shows the huge demand for better understanding and proper research for this disease, and we look forward to working with Daniel and the team over the coming three years.”

The study is currently going through ethical approval stages and will soon be recruiting ME patients under the care of immunology consultant Dr Bansal at St Helier University Hospital in Surrey.

For more information about the study, visit www.investinme.org

Happy 22nd Birthday Rosa!

Happy 22nd Birthday Rosa and may all your wishes come true!

Can it really be a year since Rosalind Amor launched her 21st Birthday Appeal?  

With the help of her family, and with support from the staff of the nursing home, where she was being fed by naso-jejunum tube,  Rosa's 21st Birthday Appeal raised a staggering £3881.69 plus £645.75 gift aid.  

This helped to achieve our initial fundraising target of £100,000 to fully fund the foundation research project on gut microbiota in patients with myalgic encephalomyelitis at the University of East Anglia. 

What a difference a year has made thanks to Rosa, her family, supporters, sponsors and all those they represent in our community, who should feel very proud indeed of what has been achieved and continues to be achieved by all the amazing, courageous and determined efforts to make the progress in research and treatment proposed by Invest in ME happen. 

Thankfully, Rosa is doing a little better this birthday and is still an undercover operative in the planning group for Let's do it for ME!  Earlier this year, Rosa posted that she'd had a dream that someone had given her £250,000 for LDIFME.  We have shown that we can make our dreams come true, as we have since received a donation of £25,000 to enable the study on B cells to go ahead at University College London, and a further pledge of £200,000 for the clinical treatment trial of rituximab, bringing the total raised so far since we launched our campaign in July 2011 to a whopping £368,000 and rising!  

Happy Birthday Rosa and may all your hopes and dreams come true! 

Rosa's 21st Birthday

9th November 2012

All I want is to be like other 20 year olds; to travel and go to uni; to socialise and be independent; to walk, swim, dance and ride. I've already lost a decade of my life to this wretched illness. Please don't let me lose another.

I've had ME for 12 years. Before that, I was a healthy child. I was always playing; I loved Puppy and Kitty in my pocket sets; I went to ballet and modern dance lessons, swimming, watch club, was learning the violin and was a junior member of the RSPCA.

When I was eight my grandma and hamster died in quick succession, followed by a unknown virus of the gut. I had a terribly high temperature and was sick on everything, even water. Unfortunately, I didn't recover. I was diagnosed with ME quite quickly but sadly, this didn't make my treatment any better. I was admitted to hospital and given physio, then sent home and relapsed terribly.

I don't remember the following year. I know I lived on Complan all that time until we finally persuaded our doctors to give me a tube. I was admitted to hospital again for a few months - a painful experience.

I was paralysed and bed-ridden for 7 years and was tube-fed for 5 and a half. I remained at home, cared for by my parents. My symptoms included; paralysis especially my legs and swallow, hypersensitivity, headaches, muscle pain, 'brain fog', muteness, orthostatic intolerance, insomnia, spasms, severe nausea with a period of vomiting and extreme tiredness.

At 15 my health dramatically improved. I was able to stand and use a wheelchair. Briefly, I was even able to walk independently around the house though still needed a wheelchair outside. I became involved with my local wildlife trusts, visiting their reserves, attending 'wild learning' courses and part of a youth group.

However, from the end of 2009 my health slowly worsened again until last year, when I had a tooth infection and a bad back, I had a major crash. My worst problem this year is vomiting which worsened my tiredness, hypersensitivity, cognitive functioning and insomnia.

I always believed that one day my body would naturally heal itself and I'd return to my previous levels of health. Now I'm less confident of recovering unless someone finds a treatment.

Click here to read more from our 2012 December update on Rosa's Appeal.

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

This editorial accompanied advertisements placed by Invest in ME.

We reached our initial £100,000 in May 2013.

Our campaign fully funded the foundation research project now underway 

at the University of East Anglia.

Click here to see the current research projects which Invest in ME is funding, is intending to fund or would like to fund.

Click here to read about the 

Invest in ME proposal for a centre of excellence for ME.

Our campaign website - Let's do it for ME!

Thank you for your support.

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!

LDIFME Diamond Jubilee at 60k!

Congratulations to all involved on reaching the 60th £1,000 towards our inital target of £100k!

There is much to celebrate as you are all making a real difference to the lives of tens of thousands of people of all ages in UK and millions worldwide by helping to build a future for collaborative biomedical research aimed at finding reliable biomarkers for early diagnosis and effective treatment of myalgic encephalomyelitis as rapidly as possible and without further ado.

Invest in ME (IiME charity) held its 7th International Conference in London on 1st June, following the exciting and productive 2-day inaugural meeting of the new Clinical Autoimmunity Working Group.  The conference journal included an article by IiME about Let's do it for ME! They said:

"Let's do it for ME! is a patient-driven campaign to raise awareness and vital funds for a centre of excellence for translational biomedical ME research, clinical assessment, diagnosis and treatment for patients, and training and information for healthcare staff based at the University of East Anglia in the UK and aiming to work collaboratively with international biomedical researchers."

"The Let's Do It For ME campaign is a positive and proactive campaign. The aim is to raise funds for biomedical research but everyone's input is welcomed - be it just ideas or moral support for other people's fundraising.  Whilst raising funds for biomedical research the campaign is also raising much needed awareness and allowing correct information about ME to be disseminated." 

"In a short article such as this we cannot mention everyone who has taken part, or contributed with money or ideas. But the campaign has been effective and re-energised research, making the go-ahead for the IiME proposal nearer to reality.  Rather than waiting for others to do things – a strategy which has not fared well over a generation – the people involved in the efforts to make the IiME proposal a reality are taking it on themselves to make a difference."

Please click on this link to read the full article on Let's do it for ME in The Journal of IiME Volume 6 Issue 1 - IIMEC7 Conference Edition . The Journal contents include the following articles:

-  Let’s Do It for ME
- The New International Consensus Criteria for ME
- Jørgen Jelstad - The Drug and the Possibilities of Changing Everything
- Current Status of ME in Sweden
- Treatment of ME and FM with a Staphylococcus Vaccine
- Transcranial Sonography in the Diagnosis, Follow-up and Treatment of ME
- The Immunological Basis of ME - by Margaret Williams
- Presenters at IiME Conference
- Conference Agenda

Hard copies of the Journal are also available from Invest in ME - email info@investinme.org or visit www.investinme.org for other contact details and the full set of conference DVDs are also now available.

Many thanks to all those LDFIME supporters who kindly submitted photos for the image used and congratulations and many thanks to all who have joined in with the spirit of this campaign so far! 

LET'S DO IT FOR ME!

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

Giles Meehan on video - Let's do it for ME!

Giles says:

"I spent 4 happy years at Cambridge University, studying Structural Engineering. Soon after I started my first job, I came down with cytomegalo virus (CMV). I was extremely ill in bed for several weeks, with a huge range of symptoms. Despite trying to force myself back into work, I basically never recovered. There were other complications too, and I was eventually diagnosed with ME (Myalgic Encephalomyelitis). I have spent most of my twenties virtually housebound (about "25%-30% well" on the disability scales). But thankfully in recent years I have been getting better. I am now working part time as a freelance TV producer, and have made caravanning and boating programmes with a friend. I’m very aware that I still haven't made a full recovery, but I am going out more, and getting back to other activities too - and hope to continue getting better!

My videos are really only a way for me to put together some of my thoughts while I've been ill, about what ME is and how people might be helped to get better. For some people severely affected, though, a full recovery may not be possible, so it is important to try and understand and support everyone. I am quite surprised and humbled that so many people have already taken an interest in what I'm saying, and that it relates so closely to their experiences. If my video blogs can help anyone else at all in any small way then I’m delighted, it’s more than I was hoping for. Interestingly, even my good friends who have known me closely through my illness, have been surprised and hadn't realised just what it can really be like having ME.

I plan to carry on making more video blogs over the coming weeks and months. There is plenty I'd like to say, particularly about treatments and therapies that I have tried, and friends with ME have tried - and about our experiences. My recovery so far has been very slow and gradual, and I believe in my case is thanks to a lot of rest, careful pacing and managing my energy, as well as a range of good nutritional supplements, a gluten free and dairy free diet, chiropractic therapy, and more...

Despite over 4,000 published medical research papers over the years, explaining so many things that go wrong physiologically in the bodies of people who have ME, doctors and patients still do not know or understand the underlying mechanism or causes. This is why it is essential to support serious biomedical research into this illness in this country now."  Giles Meehan.

• Many thanks to Giles for making this video as part of his series of video blogs, which are very helpful and informative for anyone wanting to understand more about myalgic encephalomyelitis, including sufferers themselves, family, friends, carers and professionals, and which may be viewed via Giles' excellent website Get Well From ME.  Thank you Giles and to all those who join us in saying ...

Let's do it for ME!