Thank You Jeremy Corbyn!

Online group card to thank Jeremy Corbyn for agreeing to open IIMEC13:
By Jo Best

Dear all,

I have set up an online group card for anyone who may like to sign to thank Rt Hon Jeremy Corbyn MP for kindly accepting an invitation by Invest in ME Research to give the opening speech at the charity’s 13th international biomedical research conference in Westminster, London, on 1st June 2018.

The link is here:

Jeremy Corbyn has served as the Member of Parliament for Islington North since 1983 and as Leader of the Labour Party and Leader of the Oppositon since 2015.

Invest in ME Research explained that the charity has been in communication with Mr Corbyn’s office for some years and with a constituent whom they have supported. Mr Corbyn has received Ian Gibson’s book, published in March this year, ‘Science, Politics, ….and ME‘ and other IiME Research informational material about Myalgic Encephalomyelitis and ME research over the years. They wrote,

“We have been told the invitation has been accepted – but that it is always subject to external events – general election, political events, etc. That is fair enough. The best way for patients to react, if they wish, is probably just to express thanks – maybe on something like Twitter.”

So I thought an online group card may be an easy way for people to do this if they wish, and I hope it goes without saying that this isn’t a party political issue.

The sad fact is that ME patients and their families in UK have been let down by successive governments over several decades past.

ME as a disease (classified by WHO as neurological since 1969) has been neglected, misunderstood and even maligned, and now is the time for change.

The Chairman and Trustees of Invest in ME Research have always campaigned for change in the way that ME is perceived and treated, as well as providing much-needed support to individual patients and families, often suffering dire circumstances that should not exist in civilised society in the 21st century.

The charity’s main means of achieving change is by finding, facilitating and funding biomedical research, but the proactive support of politicians is needed to ensure that sufficient public funds are directed to high quality biomedical research focused on establishing tests for differential diagnosis and effective medical treatment options for people diagnosed with this disease, estimated at 250,000 people in UK alone, 10% of whom are children and 25% in the category of severe or very severely affected, many unable to move, speak or swallow.

While David Cameron was Prime Minister, he arranged a meeting between IiME Research and the NHS Commissioning Board Authority, Director – Domain 2- Improving the quality of life for people with Long Term Conditions, Dr. Martin McShane, as a result of meeting with a constituent to discuss ME.

Jeremy Corbyn has, over several years, supported issues of concern to constituents with ME. He has signed letters, petitions, Early Day Motions, including EDM 778, tabled in 2010 by Ian Swales, then MP for Redcar, in support of constituent with severe ME Jan Laverick, and her mother Margaret Laverick, which earned a short debate in Westminster Hall and resulted in the first ever ringfenced funding for biomedical research into ME by the Medical Research Council, £1.5m (later increased to £1.6m).

This was a fine example of what may be achieved by positive political action, but amounted to about £6 per head of the UK ME patient population with no clear strategy for how this funding would be focused on finding cause/s or treatment/s.

Jan Laverick went on to co-found the Let’s Do It for ME campaign with Paul Kayes and me a few months later in the summer of 2011 to help crowdfund to enable the programme of biomedical research of the Invest in ME Research Centre of Excellence for ME to begin, and hopefully progress to fruition.

Ian Gibson is a former MP for Norwich North and his concern for constituents with severe ME prompted him to lead an Inquiry. The Gibson Report was published in 2006, the year that Invest in ME first registered as a charity.

Dr. Gibson is also a former Dean of Biological Sciences at University of East Anglia and has been instrumental in progressing the charity’s efforts to establish Norwich Research Park as the hub of an international Centre of Excellence for ME. He is a member of the Invest in ME Research Scientific Advisory Board and he chairs the charity’s annual London conference, so he will receive the Thank You card by email on Thursday 30th November to present to Jeremy Corbyn.

The link is here and anyone is welcome to sign and leave a message:

With thanks and every good wish to all.

Jo Best
(Diagnosed with ME in 1992, housebound since 2008)

“This is such a nice idea – it would be wonderful to reach 1000 thank yous. The team actually did not think the reaction would be so good as everything has been concentrating on establishing new opportunities for collaboration at the Colloquium, and the new Thinking the Future event for early career researchers. So it has made everyone happy to see the response. Thank you all.”
Invest in ME Research, November 2017.

The Invest in ME Research Conference is open to the public by pre-paid ticket-only available at an earlybird discounted price until 3rd March 2018:

Our blog about the 2018 conference events:
Back The Future of Biomedical Research for ME!

Rituximab Trial Status November 2017

What had looked to be a promising line of research that could lead to an effective treatment for a subgroup of patients defined by the Canadian Criteria and major understanding of the pathology of this disease has proven to be inconclusive. IiME Research –

Surprising news from Norway today, but the ground-breaking work continues in UK thanks to all involved and everyone supporting Invest in ME Research, so please don’t be too disappointed, as the charity explains in the following statement published today and reposted below.

Professor Olav Mella recently publicly released early details from the Phase III multi-centre double-blinded placebo-controlled Rituximab Clinical Trial which has been ongoing in Norway for the past year.

Invest in ME Research have been informed by Dr Oystein Fluge of this.

Invest in ME Research have issued this preliminary statement (below).

The Haukeland team will be presenting at the IIMEC13 13th International ME Conference in London on 1st June 2018.

Invest in ME Research Initial Statement
on Norwegian Phase III Rituximab Clinical Trial

November 21, 2017

The statement from Haukeland University, Bergen from Professor Mella is a major disappointment for people with ME and their families.

What had looked to be a promising line of research that could lead to an effective treatment for a subgroup of patients defined by the Canadian Criteria and major understanding of the pathology of this disease has proven to be inconclusive.

Naturally, at the charity, everyone is disappointed. We are disappointed for all the ME patients and carers and families and friends.

We are especially disappointed for all of our supporters and all who have made such generous and tireless efforts to raise funds and awareness of our campaign.

We are very disappointed also for the Haukeland research team – a wonderful team who have brought hope to all patients – and, importantly, brought new insight into this disease and new interest from other areas.

However, we have found, throughout 12 years of trying to change the way that ME is perceived, researched and treated that it is never easy.

It would be easy to give up, to resign oneself to nothing changing, to accept the status quo.

But we think differently.

At the 2017 Colloquium/Conference we invited Karolinska Institutet in Stockholm to present negative results. Because it is important to use negative results for positive effects. Negative results are data and the Norwegian rituximab trial has generated a lot of data that needs to be looked at very carefully.

When we first engaged Professor Jonathan Edwards into research into ME one of the earliest comments he made was that he was pleased to note that our conference did contain negative results.

We see the positives in this research which has been performed by researchers of the utmost integrity who have not made headlines for the sake of it but have thoroughly conducted outstanding research, and still retained a humility that is to their credit and that of their colleagues and team.

We have an excellent research team in Norway which has served the ME patient community and their families with honesty, integrity, professionalism, detemination and an empathy which had never been seen before in this field.

We have established good working relationships between the Norwegian researchers and the UK Centre with input from UCL and UEA/Quadram Institute.

We have data now – more than before.

We have research which IiMER has established and a foundation for the Centre of Excellence for ME.

We have international collaboration in research into ME that will continue.

And we have new plans – already in the making.

The researchers from Haukeland will give more detail on their results and publish a paper or two which will benefit all studying ME.

For us we have invited the Haukeland team to Norwich to discuss the way forward.

We remain positive. Another setback, another day.

We have already been in discussion with our advisors and with the Norwegian team and we will meet to clarify the best way forward in the near future with our major funder and researchers.

We still have much good research being funded and being planned and feel our stategy is, and will pay off and lead to most rapid route to finding cause(s) of ME and effective treatments.

In another age, and in another struggle which has some parallels to that which is forced upon people with ME, these words strike a chord –

“ We must accept finite disappointment, but never lose infinite hope. ”

– Dr Martin Luther King


We are sorry to share disappointing news but encouraged that this presents the next step to achieving tests for differential diagnosis and effective treatment options for people with ME.

The charity’s B-cell/UK Rituximab Trial microsite is now here:

Thank you for your support!

Make ME crafts

If your looking for that extra special present for someone much loved this Christmas, then look no further than Make ME crafts. Including beautiful jewellery, stunning cards, unusual bookmarks and even hanging octopuses there is something for everyone at Make ME crafts!

What’s more you’ll also be raising much needed funds for IiMER as a proportion of every item sold goes towards the charity. Many of the items are made by ME sufferers themselves or else crafty sympathisers. So shop until you drop knowing it’s for a good cause!

If your interested in helping you can register as a seller or contact them for more information on how to help. It doesn’t matter if your interested in donating craft supplies, becoming a regular trader, selling a one off item or anything else. It all helps. Our departments are slightly bare ATM so we welcome any support with open arms!

“At ‘Make ME’ we aim to focus on the little things that people with this condition can accomplish, bit by bit, instead of the bigger things we can’t; to shift attention to the positive ways we can still make a difference.

Being ill doesn’t mean we have to stop being creative.Even if we’re stuck at home, or in bed, we can still contribute. Using the power of the internet and keeping our projects flexible enough to manage around our health, we can get our lovingly created crafts out there, raising awareness and fighting for real and effective M.E. treatments.

Crafts made by sufferers are listed at their own pace, as they complete them, with many sellers working on projects as and when they’re able. There is absolutely no rush – no pressure. There are no demands or time-constraints.

It’s not about how fast you can do something, it’s about how well you can do something. We may be ill but we haven’t lost our talent, our passion or our creativity. We just can’t manage things on the same scale as healthy people. We might not be able to keep up with the break-neck pace of the world outside, but that doesn’t mean we can’t do something constructive; something worthwhile, bit by bit. To borrow a phrase from Tesco “Every little helps”. Make ME crafts 

Visit their website

Happy Birthday Jon Campling!

Best Birthday Wishes to Jon Campling and Big Birthday Thanks
for all he does to support Invest in ME Research!

Jon aims to raise £501 for the charity to help celebrate his 51st birthday today.

Donate to Jon’s birthday fundraising for IiME Research on

Follow @joncampling on Twitter.

Find Actor Jon Campling on Facebook.

Catch up on Jon’s support for IiME Research in 2017 on Campling Can.

Thank you for your support!

No Isolation for ME

Opportunity to trial No Isolation AV1 robot, by Invest in ME Research:

Invest in ME Research concentrates much effort on finding, funding and facilitating biomedical research into myalgic encephalomyelitis (ME) as this, we believe, provides the only means to resolve the situation in which millions of people find themselves.

But a disease such as ME presents many challenges to a patient and to a family.

It can provide challenges also to schools when a child or young person is unable to continue full time education.

Isolation is one of the most insidious consequences of ME – the full effects often not realised until much later.

We want to help change that.

In Norway, a small white robot has become a stand-in in the classroom for children and youths suffering from ME.

We want this possibility to be offered to young people affected by ME throughout the UK – and, at the same time, spread awareness of this disease throughout the education system.

At our IIMEC12 conference in London in June 2017 we invited a Norwegian company – No Isolation – to display new thinking on how to resolve some of this situation.

The Norwegian start up has developed a robot that helps children and youths with long-term illness participate in the classroom on their own terms.

The robot, called AV1, acts as the students’ eyes, ears and voice in the classroom on days where they cannot be physically present.

After discussions the company has made an offer to Invest in ME Research to provide three AV1 robots to be trialled by three families.

We will be contacting local education authorities to make them aware of the possibilities to help young people with ME. We invite support for this initiative by assisting us with contact to local schools and education authorities.

Meanwhile, if there are families that have a child who has been forced to stay at home due to ME, and who would like to participate in a trial of the robot at their school and work with IiMER and No Isolation to describe the results, then please contact us.

There will be three robots to trial.

If you would like to be one of the families trialling AV1 and would be prepared to report back during the trial and work with us, No Isolation and the school/school authority then we would be very keen to hear from you.

We invite support to help us promote awareness of the problems that young people face due to the effects of ME and how innovative use of technology can alleviate some of those effects due to isolation.

Invest in ME Research will receive no financial reward for this campaign.

The charity does this in order to highlight and overcome a major consequence of becoming ill with ME.

Full details and press release are at this link.

Thank you for your support!

More on Let’s Do It for ME blog…

Back The Future of Biomedical Research for ME!

A Day with a Son with ME