in ME Newsletter - February 2014
Invest in ME
February 2014 newsletter
IN THIS ISSUE
Possibly the 2 Most Important Research Projects for ME in the UK
Rituximab clinical trial for ME
FAQs on the rituximab clinical trial
The Institute of Medicine (IOM) contract -a new ME/CFS definition
FDA "The Voice of the Patient ' document
IiME AWARENESS and FUNDING EVENTS
'92 in 92' Challenge for Invest In Me
The Big Sleep
Walk for ME
Books on ME - MY A-Z OF M.E. (Myalgic Encephalomyelitis)
Books on ME - Can I Tell you about ME/Chronic Fatigue Syndrome?
Books on ME - Rafi Brown and the Candy Floss Kid
APPG for ME
9th International ME Conference
Registration has been open since January for the 9th Invest
in ME International ME Conference 2014 which will take place
in Westminster, London, on 30th May 2014.
The conference has been awarded the full 6 points of CPD
The theme of the 2014 conference is
Synergising Research into ME.
This reflects the move to bring together biomedical research
into ME to maximise the potential to find treatments and
We have recently added to our list of presenters and we
welcome Professor Angela Vincent, Emeritus Professor of
Neuroimmunology at the University of Oxford. Professor
Vincent has vast experience in neuroimmunology and runs the
Clinical Neuroimmunology service which is an international
referral centre for the measurement of antibodies in
neurological diseases. Her major interest is in the role of
autoimmunity in neurological diseases.
Dr Amolak Bansal will also return to provide an overview of
diagnosis and treatment in UK and will lead a panel to
discuss diagnosis and treatments for ME. Dr Bansal is
heavily involved in the research being funded by Invest in
ME and is the consultant leading the CFS service at Epsom
and St Helier Hospitals Trust in Surrey.
Professor Simon Carding of UEA/Institute of Food Research,
who is leading the IiME/UEA gut micriobiome project, and
Professor Jonas Blomberg, who has recently published
research funded by our European ME Alliance colleagues at
IMET, compliment the agenda.
More information about the conference is available here - http://www.investinme.eu/agenda.html
Biomedical Research into ME Colloquium - 4
Collaborations and cooperation between ME researchers, and
researchers from other fields, is necessary and productive.
Prior to the conference the charity has organised the fourth
Invest in ME Biomedical Research into ME Collaborative
Meeting to take place on 29th May in London with experts
from around the world discussing ME and current and future
Those attending include researchers at the cutting-edge of
their fields - not necessarily in ME research - who will
also be able to discuss the latest biomedical research
initiatives underway or planned.
This seminar has already been given the maximum CPD points
by the colleges.
With researchers and physicians from nine
countries attending we hope to make further progress in
crowdsourcing ideas and synergise research into ME. More
information here - http://www.investinme.eu/news-03.html
Possibly the 2 Most Important Research Projects for ME in
We have managed with the help of our resourceful and
imaginative supporters to raise funds to start our
foundation research project at UEA/IFR. The UEA/IFR gut
microbiota project began in October 2013. This has been an
impressive achievement based on past ME fundraising
In the absence of any credible or scientific strategy being
presented by those responsible for public funding of proper
research into ME to find causes and treatments then patients
have to find and fund their own.
There are now very good researchers and clinicians willing
to do research in this area and we need to continue to
influence the way forward.
Within this project we
have also been able to sponsor an intercalating 4th
year medical student at UEA to perform a one year MsC degree
within this project and to work alongside the PhD student.
This allows us to increase the base of
experience and research opportunity, as was envisaged with
our original proposal for a centre of excellence for ME.
Another complementary project is going to
look further at Autoimmunity and ME/CFS with the ME
consultant who is working with UEA, Dr Amolak Bansal, to
perform a detailed analysis of antibodies binding the
hypothalamus. To enable this project to go ahead an
additional funding has been pledged by our European ME
Alliance partners the Irish ME Trust).
This is not
the end of the story at all though. We continue to fund for
more gut microbiota-related research which will follow on.
Our JustGiving page is at http://www.justgiving.com/investinm-e and
we welcome help in distributing knowledge of these crucial
Rituximab clinical trial
In May we set out for
another project together with the Let's do it for ME team
and we embarked on the objective of initiating a rituximab
clinical trial, something we had announced we wished to
attempt at the 2012 IIMEC7 conference.
The target of £350,000
was set to be able to initiate a trial at UCL to treat a
group of ME patients with rituximab based on the promising
results from Norway.
Emeritus Professor of Connective Tissue Medicine at UCL, has
been the charity's advisor on this. Professor Edwards and Dr
Jo Cambridge were behind the groundbreaking proof of concept
study of rituximab in the treatment of rheumatoid arthritis,
and the project has been progressing well.
After several meetings
with UCL it has been decided to conduct the research in two
The first part
involves validating and expanding on Dr Bansal's B cell
study and this is ready to start soon. The second part
involves the actual clinical trial using rituximab to treat
ME/CFS patients selected from the cohort taking part in the
B cell study. This will start once the protocol that
depends on the B cell study, funding, peer review, ethical
approval and other administrative processes are in place. So
far we have managed to raise £283,000 of the initial target
Let's Do It For ME team have created a mascot for the
project - Professor Ldifme - and the professor is now
assisting the UCL team and also the UEA team conducting the
gut micribota project.
You can read more of the rituximab research at our dedicated
web site at this link -
See also - The
Matrix - http://www.ukrituximabtrial.org/IIMEUKRT%20Matrix.htm
The idea of the Matrix
is an idea to encourage individuals, organisations, teams
and companies to take a slot to aim to raise up to £1000
each. 100x £1000 events would raise £100,000 and we are
pleased to see a many slots reaching their target - but many
more are needed.
If you have an idea which can encourage a group, a community
a business or a wealthy philanthropist and wish to take a
slot then please contact us at email@example.com.
FAQs on the rituximab clinical trial
We receive questions from patients wishing to take part in
the trial which is understandable as ME patients have so few
options for treatments and they are generally willing to be
part of any research initiatives.
However, the charity, as funders, can have no influence on
the selection process. This will be the responsibility of
the research team and consultants.
The trial will be aiming to find likely responders based on
the initial B cell study. The clinical trial protocol will
not be designed until results from the preliminary B cell
study start to come in and the patients will be selected
from a cohort of patients who took part in the initial B
cell study. The consultants in charge of patient selection
for both parts of this trial will be those working at the
Epsom and St Helier and UCLH NHS CFS clinics. More details
and answers are available on the IiME web site which has
been created for the project - http://www.ukrituximabtrial.org/IIMEUKRT%20FAQ.htm
News of the project is available in the news page at
The Institute of Medicine
(IOM) contract -a new ME/CFS definition
One of the most talked about topics recently
has been the US government health services contacting the
Institute of Medicine (IOM) to produce a new definition for
The cost of this contract is in the region
Over 50 ME/CFS researchers and clinicians
wrote against this contract asking for adoption of the
Canadian Consensus Criteria.
Invest in ME wrote to Secretary Sebelius in
support of the many researchers/clinicians and patients
advocates who signed up to support these professionals [http://www.investinme.org/IIME%20Statement%202013-11-01.htm].
Recordings of the public comments made by
many notable and well spoken US advocates can be viewed here
Everyone's message was more or less the same
asking for the contract to be cancelled. A British lawyer
Valerie Eliot- Smith also blogs about the importance of this
debate and other topical issues here -
FDA "The Voice of the
Patient ' document
This document, produced by the FDA from the meetings held on
25th April 2013, is well worth reading and keeping for
It is a series of reports from the U.S. Food and Drug
Administration's (FDA's) Patient-Focused Drug Development
Initiative "The April 25 Patient-Focused Drug Development
meeting gave FDA the opportunity to hear directly from
patients, patient caretakers, and other patient
representatives about their experiences with this
The discussion focused on two key topics:
(1) disease symptoms and daily impacts that matter most to
(2) patients' perspectives on current approaches to treating
CFS and ME. The questions for discussion (Appendix 1) were
published in a Federal Register notice that announced the
The IACFS/ME 11th Biennial
International Research and Clinical Conference to be held in
San Francisco, California, USA, March 20-23, 2014. More
information here - http://www.iacfsme.org
IiME AWARENESS and FUNDING EVENTS
A special mention for our supporters. We often thank our
supporters and try to convey the appreciation of so many
patients and families who are not in a position to do more
themselves - and so rely on the efforts of the charity and
We are privileged to have such great support.
The Let's Do It For ME
campaign also has to have special mention.
The impressive imagination and vision which has dominated
this campaign to aid Invest in ME in establishing proper
research at prestigious universities and increase research
collaboration is only exceeded by the sheer positivity shown
by those running campaigns and those taking part in them.
We must not forget the great efforts of supporters using
e-bay to help the charity by selling items in aid of
It has been a great honour to work with people who are
positive, creative, determined and show the integrity and
vision which is required to overcome and overturn a
generation of neglect by those responsible for treating,
funding and representing ME research.
In a short newsletter we
cannot show all of the wonderful efforts being made to
support awareness and biomedical research.
There are many whose efforts are not well known but their
support has helped to ensure better education about ME,
more awareness of the illness and greater possibilities for
biomedical research to be developed.
We thank all of our supporters for continuing to help us
throughout the year. We hope you realise how much we
appreciate your support.
The world of ME has many hurdles - one of them being
isolation for patients. It is a too infrequent an
occurrence for friends of someone with ME to stay in
contact, let alone actively do something to help. Many ME
patients can feel isolated and abandoned by their friends
and even family members.
So we are amazed at the reaction and spirit of a group of
four friends who are aiming to visit all 92 English
Football League Stadiums in under 92 hours in support of
Invest in ME and to raise money and awareness for the
They are doing this to help their friend who
The event begins on April 16th 2014. We are really grateful
for this group of four who are doing an amazing job
raising awareness before the event has even started.
Football clubs, hotels, TV companies have already shown
interest in this positive way of raising awareness and
funds for ME.
One can follow the news of this event here
and make donations to support the amazing event
The charity has had a flag especially made for the tour and
this will be taken along and used for photo opportunities at
all of the clubs.
The Big Sleep
Julia Cottam is once again organising The
Big Sleep for ME event in May.
Julia and the team did a fabulous job last
year and this annual event is growing nicely and looks to
be a great event to be involved in during an ME Awareness
Week from 11th to 17th May.
You can read more about the
many ways to get involved here
Walk for ME
This is the second year that Walk for ME event is being
organised and it is another great event for almost anyone
to take part. The website has a gallery of last year's
walks and gives easy to understand information how to get
involved. Those helping Invest in ME in this event will be
assured that all funds received are used for activities
for biomedical research into ME.
Find out more from the website here -
Several active individual pages on Just Giving have been set
up to help IiME -
Two entrants to the Bath half-marathon are raising funds
Mark Webster is the son of ME patient Isabel Webster.
Mike's JustGiving page and story are at -Mark's
Bath Half Marathon 2014 page
Catherine Ellicott is running also - her JustGiving page is
Bath Half Marathon 2014 page. Already Catherine has
achieved an incredible total.
Our grateful thanks to Mark and Catherine on behalf of all
patients and carers.
Stephen Cox will be the charity's first supporter running in
the London marathon on 13th April.
Stephen has set up a JustGiving page - http://www.justgiving.com/Stephen-Cox4
For a small charity such as Invest in ME it has always been
difficult having an entry in the London marathon as the
event seems geared for those charities who can afford to buy
places. So we are incredibly grateful to Stephen for
breaking the mold on this.
We would welcome any support in raising awareness of ME with
these marathon events.
Marathons are no mean feat to accomplish
- for anyone.
An extreme way of raising awareness of ME
and much-needed funding for biomedical research into ME has
now been set in motion by Mike Shepherd. Mike is taking on
the North Pole Marathon.
As Mike writes on his web site -This is the
challenge of a lifetime and it is the result of my daughter
having ME since September 2008. I have seen firsthand how
damaging ME can be to a person's life, their prospects and
Books on ME
MY A-Z OF M.E. (Myalgic Encephalomyelitis)
by Ros Lemarchand
Do you feel that no one understands you?
Do you feel alone with this illness?
Do you find it hard to express how you
Ros Lemarchand's book of poems about life
with M.E. is a must for you.
MY A-Z OF M.E. (Myalgic Encephalomyelitis)
is available in both Kindle and paperback editions
Ros also has a YouTube video about the book -
Can I Tell you about ME/Chronic Fatigue
This book by Jac Rayner.
IiME chairman Kathleen McCall has reviewed the book for the
publisher and included the following comments -
"This book is very clear and easy to read.
It is a great resource that can be used by ME patients and
their carers to explain and inform others what it is like
to be affected by ME/CFS.
Not only children but adult relatives, friends and teachers
would learn a great deal from this book."
Available on Amazon
at this link
Jac's book is also to be translated into Norwegian.
Rafi Brown and the Candy Floss Kid
Sue Stern has raised over £1000 by taking a MATRIX slot and
donating proceeds to IiME from sales of her children's
novel last year - just a year ago.
One of Sue's sons has been severely affected by M.E. and
other related conditions for many years.
Her book has ISBN code 978-0-9574948-0-0.
Sue was interviewed by Kath, at Wythenshawe local radio, on
her programme, 'Disability Matters'.
As a result of her suggestion, I contacted the Royal
National Institute for the Blind, who are now making a
large-print version of the book, and when funds allow, a
Sue's MATRIX slot is
APPG for ME
ME patients are continuously denied
benefits as the training given to healthcare professionals
and medical assessors is not based on the biomedical basis
of ME. So Invest in ME used the
opportunity presented by the recent APPG for ME in UK
parliament where the minister for disability Mike
Pennington attended the meeting.
One of Invest in ME's questions to the minister did get
through and received a response.
This, and the other questions posed by IiME which were not
asked are available -
We encourage as many people as possible to make their views
known to the minister - stating that the main barrier to
work and living life to the full with ME patients is poor
health and lack of proper medical care. The lack of proper
medical care is due to lack of funding given to biomedical
research to look into the underlying causes of ME and
finding a diagnostic test.
The DWP co-funded the flawed PACE trial which sought to
look into management of ME using CBT, GET or pacing without
the cause of ME being known and which have shown to be a
disastrous waste of money with no worthwhile result. All
ministers carrying any responsibility for patients has to
be made aware of these realities.
FILMS on ME
Finally noteworthy is
a new film about ME which promises to raise awareness
about ME at an international level in a way that may
help us all change things.
funding from a KickStarter campaign
Canary in a Coal Mine follows
the lives of several remarkable people living with a
Myalgic Encephalomyelitis. They are forced to leave
careers they loved, abandon the dream of having
children, or face the prospect of being locked away
forever in their homes and bedrooms. Worse still, most
doctors, and sometimes those closest to them, don't even
believe they're really ill.
The film is sure to
make an impact.
Best wishes to all
All inquiries to Invest
in ME -
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