October Updates

We bid farewell to a busy October by introducing you to Frankenbear, joining his cousins Merlin Bear and Scary Bear for the fundraising for research party! We hope you’ve had a Happy Halloween to round off a busy month for Invest in ME charity and their supporters, and for the wider ME community in UK and beyond. Here’s a quick roundup with apologies for anything we’ve missed out.

Thanks to everyone joining in Paul Kayes’ GIVE IT UPtober or Ali Head’s STOPtober for Invest in ME. Lynne Allan kindly gave up the cost of her materials for the gorgeous creations she makes, so that 100% of the price was donated to IIME, and we missed Janet Smart and friends giving up Facebook for the month!

Thanks for helping to reach first phase fundraising target for The Big Give Christmas Challenge to fund two more intercalating medical students to be involved in Invest in ME biomedical research, a very successful scheme.

Birthday Wishes went to Anna Wood, kindly supporting Invest in ME with her special day.

We wrote about the first meeting of the newly-formed European ME Research Group. IIME said, “Great meeting! Very productive going forward. Great to see the collaboration going on on a pan-European level. The way forward.”

Two meetings about Severe ME were held in Sweden by RME, the Swedish member organisation of the European ME Alliance. Their beautiful video, The Invisible Ones, was shown at the IIME research into ME meeting with Mady Hornig (Columbia) and Fane Mensah (UCL) at Norwich Research Park, another success. IIME said, “The great slideshow that RME produced with beautiful music fitted perfectly into that moment in that auditorium prior to the presentations. Everyone was spellbound and one could have heard a pin drop.”

Our campaign was created to support the forward-looking path forged by Invest in ME with the range of work they do, and in particular, we focus on fundraising for their Centre of Excellence Biomedical Research strategy. However, the need for our efforts as people home or bedbound for years by this disease, is due to the dearth of funding awarded by the UK government research funding bodies to the biomedical research so sorely needed to establish definitive diagnostic tests and effective medical treatment options to address the underlying disease process in ME. Linked with this is the apparent unwillingness by the public-funded researchers to acknowledge the true results of the PACE trial, published in 2011 in The Lancet, which showed clearly that therapies based on the notion that ME is caused and perpetuated by aberrant illness beliefs and physical deconditioning caused by a fear of activity are not effective for ME.

These results came as no surprise to patients and advocates, and many may be willing to forgive the cost of £5m of taxpayers money to fund the trial, when zero was being spent on biomedical research from the public purse, if only the PACE trial researchers would publish or admit to the true results, so that the research community could move on, with NICE guidelines for doctors amended, and an end to periodic rehash of these false reports splashed across mainstream media, spawning a fresh assault from well-meaning friends or relatives, healthcare staff, schools, employers, and the public.

It has been noted that a media splash hailing a rehash of the PACE trial tends to coincide with good news elsewhere, and which goes unreported by UK mainstream media. This month saw a detailed investigative report on the PACE trial by American journalist David Tuller, published on Vincent Racianello’s Virology Blog, and an appraisal by James C. Coyne on PLOS.org of the latest claims by the PACE researchers of long term follow up, which had been predictably splashed across front pages, greeted by the usual gasps of shock-horror and sound bites from the usual suspects, the establishment ME organisations, one of which is actually responsible for the PACE trial.

So whereas we normally would not use our strength to comment on this disgraceful game which we now see played out year in year out, we are not impervious to this constant barrage of what is essentially abuse and exploitation at the expense of our lives, and it affects some of our severely ill team members in particular. Team member Stacy Hart (who sadly lost her beautiful older sister Michele to a rapidly progressive cancer this month) asked Invest in ME for their comment and you can read what they said in full in her excellent column in the Watford Observer. You can also sign a petition about the PACE trial.

So, back to our usual FUNdraising for Invest in ME Research. Warming up for autumn with the Chilli M.E. Challenge, celebrity supporters include Ruby Wax, Jenny Eclair, Helen Lederer and John ‘Boycie’ Challis, Stevi Ritchie, following the trail blazed by Pete Bennett and others. Thank you all!

Delicious Death Eater Actor Jon Campling has been waving his Invest in ME collection box at various events this month. We’re sure you will agree that he’s a scream! He has also kindly donated some proceeds from his handmade wands to IIME. That’s magic – big thanks Jon!

Mike Harley beat his personal best in the Dublin leg of his 28 EU Marathons. His update is hot off the press and you’ll hear more about him in November. Fellow marathon man Mike Shepherd, the first person with a heart pacemaker to run a full marathon at the North Pole, doing it for Invest in ME as his daughter has ME, was unable to make it to the Minneapolis marathon this month, as he had an unexpected date with his surgeon instead. Poor Mike suffered weeks of painful swelling mistaken for mumps, but turning out to be a very long blood clot, and finally had surgery last week. He posted, “Thank you everyone for your support. Today’s op went well and whilst there is a bit of the clot left around the pacemaker cables, the rest has gone. The doc didn’t want to try to get the last bits as he would have damaged the cables and that would be really bad. I have to rest for the rest of today and then take each day as it comes.” Mike gave the pre-conference dinner presentation this year, which is on the IIMEC10 DVD.

Due to illness, Julia Cottam is unable to run the Christmas Card Photo Competition this year, but you can buy designs from previous years on the 2015 IIME Christmas page and/or visit Alison Orr’s Phoenix Trading shop for excellent cards and more with all her seller profit donated to Invest in ME.

Carers of someone with severe ME, Roxie Walsh and her mother Jayne McClean raised £510 for Invest in ME, and had their events reported in the local press. Thanks to everyone spreading the word in your local area.

Makayla Nunn made an excellent start to secondary school on reduced hours and won a Student of the Week Award, “Making her MORE POWERFUL THAN A MIGHTY STEAM TRAIN” according to a tweet by Jon Campling.

Watch this space for our plans for our take on Movember for November awareness & fundraising, which will no doubt also feature some scary facial furniture! Meanwhile, don’t have nightmares this Halloween – there’s lots of progress and realistic reasons for hope thanks to the vision and dedication of Invest in ME and we thank you for joining us in supporting this amazing small charity’s great work. Let’s Do Research. Let’s Do It for ME!

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EMERG – NEW ERA IN ME RESEARCH

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June 2016 updates: The following summary is from the Invest in ME Research June 2016 IIMEC11 Conference Report by Dr. Rosamund Vallings.

Professor Simon Carding (Norwich Research Park, UK) talked about the work of the European ME Research Group (EMERG). He stressed the need at addressing biomarkers, including brain imaging. Looking for cause, making a diagnosis and standardisation of samples should be included. A “together approach” is needed. Euromene is a group of researchers hoping to establish a network across Europe. Euromene and EMERG will work together. There is a need to look for opportunities for funding. They will build on current activity and feasibility, such as:

1) Infectious origin
a) environment
b) microbiome alterations

2) Clinical trials
a) Rituximab
b) Bacteria based therapy.

Coming together is a beginning. Keeping together is progress. Working together is success. (Henry Ford)
The Journal of Clinical Medicine has just accepted an article by Navena Navaneetharaja on: The Role of Intestinal Microbiota and Virome in ME/CFS.

(end of summary and June 2016 updates)

April 2016 updates on this exciting development in biomedical research into the neurological disease myalgic encephalomyelitis (ME).

In July 2015, UK charity Invest in ME (IiME) announced the formation of a new European ME Researchers Group (EMERG). The enthusiasm of the researchers was inspiring, and EMERG met for the first time as a group in October 2015.

Invest in ME is a founder member and Chair of the European ME Alliance (EMEA) of like-minded patient organisations. EMEA joined the European Federation of Neurological Associations (EFNA) in June 2015.

From the outset of forming as a UK charity 10 years ago, Invest in ME (now also known as Invest in ME Research) forged a path for the future of biomedical research into this disease by bringing together patients/carers, doctors, scientists, and interested political and media representatives, with their first Invest in ME Conference in 2006. The 11th (IIMEC11) takes place on 3rd June 2016.

The 6th Invest in ME international Biomedical Researchers in ME Colloquium (BRMEC6) will be held over two days on 1st & 2nd June. This is a workshop the charity has developed year on year since 2011, at which invited biomedical researchers meet to discuss their work, share ideas, plan and form collaborations to establish diagnostic tests and treatments for this neurological disease.

So we can see how the formation of EMERG is the latest milestone in the right direction thanks to Invest in ME & their Research Advisory Board, fellow members of EMEA, and all the researchers involved in the genesis of EMERG.

Forming a group or consortium of European researchers represents a very progressive step in not only helping to establish new collaborations and cement on-going ones but also in developing new research ideas and priorities and bidding for funds that would allow us to work together on joint projects.

This is the genesis of EMERG! The European ME Research Group

Thanks also to the supportive MPs helping to convene the inaugural meeting of EMERG in the hope that rapid and lasting progress can be made in the research, treatment and cure for myalgic encephalomyelitis.

An online group card to wish EMERG well in this exciting new venture at their first meeting in October 2015, is still open to sign in 2016 if you’d like to add a message.

Go EMERG!
Go EMERG!

UPDATES from October 2015

European Federation of Neurological Associations November 2015 Newsletter
European Federation of Neurological Associations November Newsletter

UPDATES reported by Invest in ME Research:

October 2015: Great meeting! Very productive going forward. Great to see the collaboration going on on a pan-European level. The way forward.

It was agreed in the EMERG meeting that an EMERG page would be created on the new IiME web site. In the meantime, we will update this page with news of EMERG http://www.investinme.org/EMERG.htm

November 2015: Part of the EMERG project coming together.
Several of the applicants in the European ME Research Group have had a successful application for funding from the EU accepted as part of the COST procedure. This topic and this application were discussed at the inaugural meeting in London. We hope that this can be integrated into the EMERG work already formed into workstreams.

January 2016: Professor Simon Carding and Dr Uldi Berkis met in Norwich Research Park to discuss future planning.

April 2016: The next meeting of EMERG will take place prior to the 6th Invest in ME Biomedical Research into ME Colloquium 2016 in June in London. Joining EMERG members will be many of the COST group as they plan together to collaborate on establishing a strategy of biomedical research into ME.

Further Reading –

CREATING A NEW VISION OF RESEARCH INTO ME IN EUROPE

IIME Announce EMERG

EMEA Joins EFNA

IIMEC & BRMEC

IIME Rituximab Research

IIME Gut Microbiome Research

IIME Centre of Excellence

‘An Inspiration for the World’ by Professor Leonard Jason

Meet Mady Hornig (Director of Translational Research in the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health in New York, USA) at Norwich Research Park October 2015.

EMERG

Meet Mady Hornig at Norwich Research Park

Do you have a keen interest in world-leading translational biomedical research into one of the least understood and most misunderstood diseases?  Can you visit Norwich on the evening of 23rd October?  Then here is a great opportunity!  This meeting is open to doctors and other healthcare professionals, scientists, students, patients/carers, friends, and anyone interested in the latest news of research into myalgic encephalomyelitis (ME). Contact Invest in ME.

Invest in ME (Research) have arranged for the Director of Translational Research in the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health in New York, USA, Dr. Mady Hornig, to attend a meeting at world-renowned Norwich Research Park on 23rd October to support the charity’s efforts in continuing to build on the current foundations of biomedical research into ME.  The charity aims to establish a centre of excellence for ME, in collaboration with researchers leading in their respective fields nationally and internationally.

In February and March of this year, Dr. Hornig and colleagues published two high profile papers reporting robust biological evidence of ME that received widespread publicity.  Dr. Hornig gave an excellent presentation at IIMEC10 – the 10th Invest in ME Conference in London in May, following full participation in BRMEC5 – the 5th Invest in ME Biomedical Researchers into ME Colloquium. Professor Ian Charles, returning from Australia as Director of the Institute of Food Research at Norwich Research Park, gave the keynote speech at IIMEC10.

Speakers included Professor Simon Carding, Leader of the Gut Health and Food Safety Programme at the Institute of Food Research, and leading the foundation study of the Invest in ME Research Strategy on the role of the gut microbiome in ME.  The IIMEC10 presentations are summarised by Dr. Rosamund Vallings in the Conference Report (pdf) and are on the DVD, which carries CDP accreditation.

Mady Hornig and Simon Carding and their respective colleagues at CII and IFR also bravely took on the heat of the Chilli M.E. Challenge for biomedical ME research!  As patients with long-term and severe ME, we feel extraordinarily fortunate to have such highly esteemed doctors and scientists dedicated to finding answers, diagnostic tests and medical treatment options for this complex and often devastating chronic illness, and willing to join in with the spirit of our campaign – having fun to help raise awareness and research funds for a very serious cause.

The October meeting will include a questions and answer session.  Dr. Ian Gibson will open the meeting, and the charity hopes to supplement the agenda with other speakers.  The meeting will take place in the Lecture Theatre of the University of East of Anglia’s (UEA) newest, Britain’s greenest, and one of the most sustainable buildings in Europe.   A small charge (£3.50) is made for refreshments and to confirm numbers.  Please use the payment option on Invest in ME website to book your ticket(s) for this event.  For those not able or wishing to use PayPal (PayPal account not required) then please contact Invest in ME via email at info@investinme.org

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‘An Inspiration for the World’

Reprinted from the original for IIMEC10 with kind permission of Invest in ME.

10 Years of Biomedical Research – Invest in ME

by Dr Leonard A Jason and Zachary Siegel,

CENTER FOR COMMUNITY RESEARCH, DEPAUL UNIVERSITY, CHICAGO, USA.

01-01 Leonard Jason

10 years of Invest in ME’s dedication to advocate for a marginalized group and the determination to allocate funds in a neglected field needs to be acknowledged and applauded.

This organization has been working in the trenches of ME, and it has been a notable and significant contribution to the field.

Invest in ME has been able to increase awareness and disseminate knowledge to scientists, clinicians, and patients within the ME community. With limited resources, but unlimited creativity and imagination, these patients and their supporters have showed the world what can be done. They are an inspiration for the world.

Stigma is still associated with too many patients with ME, and this might be partly due to our society’s infatuation with unlimited energy, stamina, and endurance, and in fact, these entities are more alluring than money. Patients with ME continue to encounter skepticism, and this is regrettable, as patients first endure a devastating illness and then they are further victimized by our society’s reaction to them. Far too many scientists and health care workers have been part of the problem, and this has to change. The status quo is not acceptable for patients with ME.

It’s only by us collectively being involved in action that the situation will change. And it has changed for many other illness groups, such as people with HIV/AIDS, who demonstrated that it is possible to bring about a sea change in the treatment and respect for people with this illness. To bring about this type change is going to involve not just the patients who have ME, but also their friends and family members who do not have this illness. The future of this field is in connecting the many patient and scientific groups into one larger body that is united for change. We welcome youth groups, civic organizations, and not-for-profits to get involved in one of the truly neglected areas needing structural changes in the way patients are treated and their availability to quality care.

Dr.  Leonard Jason  at IIME Conference
Dr. Leonard Jason
at IIME Conference

In order to push forward, we need research that involves multidisciplinary efforts that will bring together scientists from different disciplines including virologists, epidemiologists, individuals who study the autonomic nervous system, genetics, computer science, immunology, and many other disciplines. This illness represents a great challenge to medicine, and one from which we will all learn the intricacies and systems of the human body.

In addition to the massive amounts of funding that are needed to better understand this complex illness, patients living in every country need the best that medicine can offer. The key to success is a team of health care providers working closely with patients, using services that meets all of their needs. I continue to believe that learning how to pace and stay within the energy envelope is the key to having a better quality of life. But we need much more basic research to find ways to cure this illness, and one day it will be possible, just as it has with other diseases that have had adequate funding for research. ME received considerable media attention over the last year, and we now need to use this momentum to bring about the changes that are so desperately needed. There is nothing as important for our field as seeing patients as true collaborators in service programs and research that focus on better understanding this illness, and their voices and vision need to play an instrumental role in setting the agenda for the future.

By Dr. Leonard A. Jason and Zachary A. Siegel
CENTER FOR COMMUNITY RESEARCH, DEPAUL UNIVERSITY, CHICAGO, USA.

Director of DePaul University’s Centre for Community Research, Dr. Leonard Jason and his Myalgic Encephalomyelitis & Chronic Fatigue Syndrome Research Team have worked to define the scope and impact of ME & CFS worldwide.

Dr. Jason is Vice President of the International Association for CFS/ME and has been a key driver of CFS research since 1991. He is uniquely positioned to support collaboration between ME & CFS researchers, patients, and government decision makers.

Dr. Jason’s studies have shown that the direct and indirect costs of ME & CFS amount to $20 billion in the U.S. each year, and that more than 1 million Americans suffer from ME & CFS. He is currently undertaking a study of mortality in ME and CFS.

Dr. Jason presented at the Invest in ME Conference in 2008 and 2010. His articles have been published in the Journal of Invest in ME, and he wrote the foreword to the book Lost Voices. Lastly, but by no means least, he and his team braved the Chilli M.E. Challenge to help raise awareness and funds for biomedical ME research.  Grateful thanks to Leonard Jason, Zachary Siegal and colleagues from the team at Let’s Do It for ME!

To help fund education & training of doctors & healthcare professionals –

May 2016 Update: 10 Year Anniversary for Invest in ME – Sign Online Group Card

Ten Reasons to Celebrate 10 Years of Invest in ME

More about the charity’s projects & donate.

Sponsorship Opportunities for Invest in ME Biomedical Research Conference

Pledge by 16th October to Big Give Challenge!

UPDATE: Matching Donation Period starts midday (12pm GMT) Friday 4th December – http://ldifme.org/double-donations-big-give-big-cause/

the-big-give-logo

Invest in ME charity was pleased to announce in August that one their projects was selected for The Big Give Christmas Challenge. The project is to fund two more intercalating medical students from the University of East Anglia Medical School to take part in medical research related to myalgic encephalomyeltis (ME).

Medical students often learn very little about the disease myalgic encephalomyelitis (ME). What they do learn is out-of-date and based on a page that is based on flawed research. This means that students leave medical training ill-prepared for understanding or treating ME. By participating in the actual biomedical research they not only learn far more about the disease but are also given the potential to find treatment or cause. This helps the student, the university and, ultimately, patient.

The charity has had great success with the two current intercalating fourth year medical students Navena Navaneetharaja and Bharat Harbham. Navena spent over three months at Cornell University in New York with Professor Maureen Hanson and Bharat has been working under the guidance of Professor Angela Vincent in Oxford.

Medical & PhD Students at IIMEC10 2015
The Next Generation at IIMEC10 May 2015

Navena and Bharat have been of great help to Daniel Vipond, the PhD student funded by Invest in ME to work on the foundation study on the gut microbiome in ME. With Fane Mensah (UCL) they were ‘The Next Generation’ taking part in a panel discussion at the 10th Invest in ME Conference (IIMEC10) in London in May.

This work underpins the next phases of the charity’s continuing project to establish a Centre of Excellence for ME and a strategic range of biomedical research into myalgic encephalomyelitis, having successfully engaged the keen interest of scientists leading in their own field to set to work on unraveling the complexities of this neglected disease. See IIME Advisory Board.

We invite you to join us in helping Invest in ME to fund two more intercalating medical students using the Big Give Christmas Challenge campaign.

The students will be attached to one of the projects being funded by the charity. They will be supervised by professors involved in the research and learn about the disease as well as perform vital roles in the research itself. This may also involve seeing patients. By intercalating in their fourth year they gain valuable insights into the disease as well as returning to their studies with more confidence and ability to educate other students about ME.

Cost of IIME intercalating medical student project: £10,000
The Big Give Champion Funds: £2,500
October Pledge Target: £2,500
December Matching Target: £5,000

The first phase is to collect pledges from supporters by 16th October.

Pledges will be matched by Big Give Champion Funds to a total of £2500.

The sum of pledges (target £2500) plus champion funds (up to £2500) will then used for a matching donation (up to £5000) period in December.

Pledgers cannot donate to the charity online during December.

To pledge a minimum of £100 to this project, please use The Big Give Christmas Challenge 2015 Pledge Form. No payment details are required at this stage.

Pledges are paid after the matching period and by 15th January.

UPDATE: £2500 target reached – thank you!

Please see Invest in ME website for full details of The Big Give Christmas Challenge. Thank you for your support!

UPDATE: At the inaugural meeting of EMERG this week, it was clear that this scheme to fund intercalating medical students is paying dividends and tentative agreement was given to place students at other UK universities.

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