A New ME by Barry John Evans

Is available in paperback and also kindle...

Hello everyone, I thought you may be interested to hear that I have had a book published! It's about my journey so far with M.E. whilst I also talk about my struggles with autism and depression too. If you'd like to know a bit more then I've recorded a video which you can watch via this link: https://www.youtube.com/watch?v=eG8bCFpbseE


Also, if you'd like to purchase a copy then you can do so through the following links: http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403374862&sr=8-1 - this is the link for UK readers who would like a paperback. It's currently at £5.89

http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1?ie=UTF8&qid=1403374862&sr=8-1&keywords=a+new+me - this is the link for UK readers who prefer to read a kindle. It's currently at £3.06

http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403375040&sr=8-6 - this is a link for everyone who lives in the US and would like a paperback. Currently at $8.71

http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-6&qid=1403375040 - Finally, this is a link for everyone in the US who would like a copy on kindle. It's at $5.19.

Also, if you buy it through this link then it generates an extra donation to Invest in ME at no extra cost to the buyer - http://www.amazon.co.uk/?_encoding=UTF8&camp=1634&creative=6738&linkCode=ur2&tag=ininme-21

It's also available in ALL countries and 10% of  ALL profits go to the charity "Invest in ME".

You can also check out the reviews on Amazon.

Hope you all enjoy!

Barry x

P.S. thought you might like to see a video I did for M.E. Awareness week on what's it's like to live with the illness: https://www.youtube.com/watch?v=TIvc_1SCKhI

IIMEC9 - Synergising Research into ME

Invest in ME

The 9^th Invest in ME

International ME Conference 2014

Synergising Research into ME

Welcome to IIMEC9 - the 9^th Invest in ME International ME Conference 2014 in Westminster, London, UK, on 30^th May 2014.

Today Invest in ME announce some of the speakers at the 2014 conference.

The key to resolving, treating and curing ME lies in biomedical research.

Healthcare staff need to be aware of the latest biomedical research into ME as well as the multiple symptoms exhibited by ME patients and of the possible treatments available and future research directions.

Benefits of attending Invest in ME 2014 Conference

o   Increase your understanding of diagnosis, treatment and management of ME

o   Explore current and future biomedical research into ME

o   Assess the role of immunological markers in ME

o   Learn about ongoing clinical trials using Rituximab to treat ME patients

o   Learn about inflammation in the CNS and its contribution to neurological disease

o   Learn about the function of the immune response in the gut

o   Share and exchange ideas with the leading practitioners in the field

Who should attend?

IIMEC9 will be of interest to:

o Specialists in ME (CFS)

o GPs with an interest in ME (CFS)

o Neurologists

o Immunologists

o Virologists

o Palliative care nurses

o Occupational Therapists

o Specialists in pain management

o Specialists in care of the chronically ill

o Community nurses

o All trainees in these disciplines
o ME Support groups and charities 

Conference fee includes:

Entrance to the conference, lunch & refreshments, full conference documentation and certificate of accreditation (for professionals).

Confirmed Speakers:

Invest in ME are pleased to announce the following speakers at the conference -   

Professor Jonathan Edwards
	Emeritus Professor of Connective Tissue Medicine University College London (UCL), UK
Associate Professor Mady Hornig
	Center for Infection and Immunity (CII), Columbia University Mailman School of Public Health New York, USA
Professor Sonya Marshall-Gradisnik
	Associate Professor, Biochemistry, Griffith University, Australia
Professor Julia Newton
	Clinical Professor of Ageing and Medicine, Institute for Ageing and Health, Newcastle University and Honorary Consultant Physician, Royal Victoria Infirmary, UK
Dr James Baraniuk
	Professor of Medicine at Georgetown University Medical Centre, USA
Dr Ian Gibson
	Former Dean of Biological Sciences, University of East Anglia

Additional speakers are expected to be announced shortly

The conference follows the Invest in ME Biomedical Research into ME 4 seminar which covers the major initiatives in ME research being performed and in which these speakers will also participate.
As the Invest in ME initiated and funded research becomes underway at UEA (gut microbiome) and UCL (rituximab clinical trial) the conference will reflect the research being performed and focus on synergizing the research elements from around the world to find cause and provide treatments for this disease.

Also present at the conference will be representatives of the European ME Alliance (EMEA) as the EMEA AGM takes place after the conference. 

CPD Accreditation from the Royal colleges has been applied for and we hope to obtain the maximum credits for the conference, as in previous years.

How can we ensure ME research and patient care benefit from the latest thinking in ME/CFS and related areas of research?  What is the best way forward?

The Invest in ME conferences have attracted presenters and delegates from fifteen countries and our DVDs of the conferences have been distributed to over 20 countries in Europe, USA, Canada, Australia and New Zealand.

Conference Registration:

Full details of the conference can be found at this address - click here.

IiME are again offering a discounted rate for healthcare staff who attend in connection with a local ME Support Group. IiME welcome all professionals who are working with, or have an interest in, ME/CFS.

Should you have any further questions relating to the conference please contact us at: meconference@investinme.org

We look forward to welcoming you to the conference,

Invest in ME

Invest in ME

UK Registered Charity Nr. 1114035

Invest in ME, PO BOX 561, Eastleigh SO50 0GQ, Hampshire, UK

Support ME Awareness - Invest in ME

www.investinme.org

Show Us Your Best Side Competition - Winner Announced!

A few weeks ago we launched the Show Us Your Best Side photo competition to raise awareness of, and make the support there is for, Invest in ME's planned biomedical research centre as visible as possible. The competition has really helped to get the LDIFME photo album off to a flying start! Thank you to everyone who took part, and to everyone raising funds for Invest in ME.

Our album:




Please keep sending your photos to us at fundraising4me@gmail.com to add to our album.

We've been sent a good variety of photos and details, thank you to everyone who has taken part to raise awareness so far. When it came to judging the competition, we looked to Invest in ME to choose the winning photo. While it was agreed there were many good entries, and several were very strong contenders, it was unanimously decided by Invest in ME that.. the winner should be.. the Mawer family! 

Congratulations to Tanya, Tara, Dave, Keisha, Tasha!

Tanya (Mum), Tara (11), Dave (dad), Keisha (oldest sister aged 14) and Tasha (middle child aged 13).

Tanya Mawer sent the following response to us on hearing of the competition result:

"Hi my name's Tanya (42) mum to Tara (11) who was diagnosed with CFS in November 2010. Thank you all so much for voting for us and choosing our family group photo as the winner – we are all extremely thrilled and feel very honoured to win the photo competition, I would like you to all know the news has put a lovely big smile on Tara's face.

Prior to falling ill Tara was extremely active (almost to the point of hyperactive!) she did tap and modern dance and musical theatre and loved to sing. We used to tease her as she used to sing instead of talk and dance everywhere instead of walk. Sadly, she's now had to give up on all of those activities.

I feel we are very lucky, and think all in all we have a great team behind us at our local Children’s hospital: -

• Consultants Senior Registrar (we have never had an appointment with the actual consultant),

• Physio – who initially wanted us to do progressive exercise – which we tried and stopped after 4 days as it made Tara worse, so now we do a half hour hydrotherapy session per week instead,

• OT – who runs the weekly hour long “rehab group” with other CFS children,

• Hospital school teacher – who was Tara’s only teacher for the past year and works from a room on one of the Children’s wards

• Clinical Psychologist – who is trying to help Tara come to terms with her illness.

All of whom are brilliant, though not very forthcoming with information – we found out about virtual school via TYMES Trust* and feel that the medical profession only want to push Tara back into “normal” routines, environments and school without appreciating fully that if she were able to do that – she would! Tara has chronic back ache, that we treat with wheat bags, heat gel, calpol and nurofen (our one off prescription of codeine now has gone), we recently stumbled upon a “pain be gone” pen at our local chemists which we trialled overnight and then bought the next day – it works sort of like a tens machine and is helping Tara to become a little more comfortable with her back, although it doesn’t entirely remove the pain as it stubbornly refuses to go. She also suffers with nausea all the time too, we're onto our second anti-sickness drug which we give her three times a day with her meals, in an effort to find something to relieve the nausea for her – and hurrah! It’s working (but shhhhh don’t tempt fate). Other than that she also suffers from headaches, sore throats, joint and muscle pains, burning eyes, pins and needles, swollen lymph glands in her neck, stomach pains, noise sensitivity (she wears ear defenders when I hoover or use the hair dryer etc - only certain sounds seem to upset her, not all noises) and of course tiredness. She finds being in large noisy places such as shopping centres and schools too noisy and too exhausting, social interaction on a large scale is too much for her.

We're currently looking into different schooling options for Tara, as we tried unsuccessfully to get her back to school by sending her for the first two lessons every day. This gradually wore her out ending in a relapse which lasted a month. The Registrar at our recent meeting seems to think the Nisai Virtual academy route is a great idea, so we are pursuing that and trying to get the school to agree to fund it. At this moment in time the school are not agreeable to funding virtual school, although we’re still doggedly negotiating options with them. We have Tara back at her “mainstream” school for one Maths lesson on Mondays, Tuesdays and Wednesday. She also attends OT Group for an hour on a Thursday and Hydrotherapy for half hour on a Friday. Unfortunately, for the time being, this is her limit and so anything extra (such as virtual school) would be too much right now. We are in the process of applying for a Blue Badge (fingers crossed we get it) and taking everything a day at a time.

As a family we are battling with the ups and downs this illness brings. During May this year, feeling frustrated and useless we decided to raise funds for the TYMES Trust* and as a family comprising of myself, Tara (who did it in the wheelchair), Dave (dad), Keisha (oldest sister aged 14) and Tasha (middle child aged 13), and Taras best friend Abby, we recently completed a 5 mile sponsored walk and successfully achieved a total of £607.06, which was fantastic.

I have attached a photo of myself and Tara (on a good day) and the family on the day of our sponsored walk.

If you wish to contact me my email address is: tanyamawer@hotmail.com  I am happy for my email address to be shown, if anyone else in the same boat wants to get in touch - it's good to support and help each other wherever possible.


Whatever else you do, keep smiling

Best regards

Tanya and the rest of the Mawer family" 


In a very generous twist, Tara has chosen to donate her prize to a raffle to raise funds for Invest in ME. Such a selfless and positive thing to do, Tara is clearly determined to make a difference to others, despite being very unwell herself. We wish Tara and her family all the very best and are touched to have helped brighten their day with this news. 


*TYMES Trust - The Young ME Sufferers Trust - is the longest-running UK charity for children and young people with myalgic encephalomyelitis and won the Queen's Award for its voluntary services in 2010. Executive Director Jane Colby, an ex-headteacher with personal experience of ME, kindly commented in our Guestbook when our campaign first launched in July:

"Quality biomedical research will ensure that people with ME are taken seriously. We want to see the work of Dr John Chia on enteroviruses replicated in the UK and further work on enteroviruses funded. Any centre that can do that gets our vote."


Thank you to everyone who sent in their photos and to all our supporters for raising awareness and funds for Invest in ME and the planned research centre. 

Please keep sending us your photos at fundraising4me@gmail.com. We wish to build on the success of this competition and will be selecting a further photo each month to be highlighted on the LDIFME blog. All photos sent to us by midnight November 30th will be eligible for the Photo of the Month for November.

A UK Centre of Excellence for Biomedical ME Research and Treatment

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, 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.

ME is multi-systemic disease classified by the World Health Organisation in the chapter on Diseases of the Nervous System (neurological) at WHO ICD-10 G.93.3, which lists post-viral fatigue syndrome and benign myalgic encephalomyelitis. CFS (chronic fatigue syndrome) is a term that is listed in the alphabetical index with a reference to G.93.3.

Different criteria for both ME (myalgic encephalomyelitis) and CFS (chronic fatigue syndrome) have been developed in different countries over the years. In the UK, CFS/ME has become an umbrella diagnosis for patients whose similar symptoms may have quite different causes, creating confusion for clinicians and researchers alike, and a barrier to useful scientific progress in this important area of human health. A group of international researchers has now developed a new set of criteria for ME, which can be used for both clinical diagnostic and research purposes – known as the International Consensus Criteria.

Some 250,000 people are thought to have ME or CFS in the UK - 25% of those are severely affected and 10% are children. Some are so severely affected that they cannot move, speak or swallow. Studies at Dundee and Newcastle Universities found that 40-44% of patients with a diagnosis of CFS/ME were misdiagnosed and some had other, potentially treatable illnesses. Development of a reliable diagnostic biomarker and objective biomedical tests for the disease is therefore a priority. This will be of huge benefit to doctors and patients alike.

Patients with severe ME have been largely excluded from research and also from treatment, as services have not been developed to meet their special needs and lack of research means that doctors have no evidence-based treatments to offer them.

In a UK study, ME was found to be the biggest cause of long-term absence from school. Research carried out at Dundee University and published in September 2010 showed evidence of persistent underlying viral infection in children, the same as previously found in adults in 2005. This adds to the mounting body of scientific evidence of the biological processes at work in ME, yet there is no cohesive strategy for taking this research forward so that these biomedical findings can translate into treatments of the root cause of the disease and perhaps even prevention.

Invest in ME is a small UK charity with a big idea!

In 2010, at the 5th annual international conference on biomedical ME research (which it hosts) Invest in ME announced its proposal to set up a Centre of Excellence in UK, combining biomedical ME research with clinical diagnosis and treatment for patients and training for health professionals. A year on and almost everything is in place for this exciting new venture to go ahead. Patient care will be at the heart of the centre and clinical diagnosis of patients will be made using the correct and up-to-date diagnostic criteria. An important aspect of the biomedical research is that distinct patient cohorts are properly defined and maintained. The research being proposed by the university would be of the most advanced possible – using virology and immunology as the key for examining patients.

Invest in ME has links with other researchers and institutes in Europe and Australia and has funded UK research by the innovative Whittemore Peterson Institute for Neuro-Immune Disease of Nevada, USA. Foundations are therefore already in place for international researchers to work collaboratively to advance science and provide the promise of better treatment and possible restoration of function and quality of life to a section of the community who have received very little help in the past, including children and the severely affected.

Do you want to help us make this big idea a reality?

Let's do it for ME!

How you can help