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
www.justgiving.com/fundraising/support-invest-in-me-for-my-birthday

Follow @joncampling on Twitter.

Find Actor Jon Campling on Facebook.

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

https://twitter.com/joncampling/status/929800731498074112

Thank you for your support!

No Isolation for ME

Opportunity to trial No Isolation AV1 robot, by Invest in ME Research:
http://www.investinme.org/IIMER-Newslet-1711-02.shtml

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

Welcome to IiMER Research Blog!

Invest in ME Research have created a page on their Centre of Excellence website for blogs by researchers funded by the charity to describe what they are doing, what experiences they have, what they think of research into ME, what they hope to achieve – and allow more communication with patients and the public.

IiMER hope this will help more people understand ME (Myalgic Encephalomyelitis) and the possibilities and opportunities which are available and being created by a strategy of biomedical research into the disease. You can comment on the individual blogs if logged in via Disqus, Facebook, Twitter or Google.

Kindly kicking off the new Research Blog is Katharine Seton, now in the second year of her PhD and based at Quadram Institute, the hub of the Invest in ME Research Centre of Excellence for ME.

Katharine describes her role in the research programme, the study she is currently focussing on, and explains why she has a personal investment and interest in ME research. Click here to read, comment, share: “Defining autoimmune aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”.

I aspire to help find a cure for ME … so watch this space!

Katharine Seton – Quadram Institute, Norwich

Katharine was among the PhD students speaking about their work at the charity’s 12th international biomedical research conference in London in June. Their presentations are on the IIMEC12 DVD available here.


(pictured above: Fiona Newberry, Shen-Yuan Hsieh (Ernie), Katharine Seton)

Fane Mensah, currently doing his PhD at UCL, also presented at IIMEC12.
The Research Blog includes articles by Fane that were previously published by IiMER as newsletters, so if you missed these, or would like to comment, they are ME/CFS – Through The Eyes of a Young Researcher (first posted January 2015) and Research News from Fane Mensah (first posted February 2017).

(pictured above: Fane Mensah, Christopher Armstrong and Isabelle de Rooij)

Thank you all involved for your support!

Please share widely: http://www.investinme.org/ce-research-blogs.shtml

£500 matching donations period for Movember 2017!

For this “Movember” for men’s health we have a matching donations period of up to £500! Plus I’ve included a couple of links to some interesting recent research projects which suggest gender differences in ME/CFS.

For those of you who haven’t heard of “Nomenbar for ME” it is LDIFME’s take on “Movember” awareness raising month for men’s health.

It’s true, in common with many other autoimmune diseases, that ME is more common among women than men with an approximate ratio of 4:1.  However men of all ages, races and types still suffer from it.


Do men and women suffer from different phenotypes of the disease? Researchers at the Vall d’Hebron University Hospital in Barcelona recently tried to find out by comparing the characteristics of 1309 consecutive ME/CFS patients (Fukuda-defined). Of the 1309 patients, 119 (9.1%) were men and 1190 (90.9%) were women. The researchers found a number of significant differences between the sexes in a variety of clinical and demographic factors such as but not limited to; age of diagnosis, symptoms and coexisting conditions. It’s still impossible to say from just one such simple study whether this suggests specific phenotypes but, as the authors say, as ME is best seen as a neuro-inflammatory process and there are neuro-immune differences between the sexes it’s quite possible. Read more.

There has also been interesting findings regarding energy metabolism. It’s been proven that all ME sufferers suffer from problems with their Cytric acid cycle; basically the body’s ability to gain energy from carbohydrates. Instead it makes energy from different, lower yielding sources of energy. However it seems there’s a sex difference here too; Øystein Fluge of Haukeland University Hospital in Bergen, Norway, and his colleagues studied amino acids in 200 people with CFS, and 102 people without it. The levels of some amino acids in the blood of women with CFS was abnormally low – specifically for the types of amino acid that can be used by the body as an alternative fuel source.These shortfalls were not seen in men with CFS, but that could be because men tend to extract amino acids for energy from their muscles, instead of their blood. And the team saw higher levels of an amino acid that’s a sign of such a process.” It seems that both male and female CFS patients may have the same obstruction in carbohydrate metabolism to energy, but they may try to compensate differently,” says Fluge. Both sexes had high levels of several enzymes known to suppress pyruvate dehydrogenase (PDH), an enzyme vital for moving carbohydrates and sugars into a cell’s mitochondria – a key step for fully exploiting sugar for energy. Read more.

As usual we are inviting “guest blogs” this month from men with ME telling their story. Email us at fundraising4ME@gmail.com or contact us via Facebook or Twitter if you want to participate

Visit our main Movember blog including links to all the guest blogs since 2015 ldifme.org/2015/11/01/nomenbar-for-m-e/

Visit this year’s JustGiving page solely dedicated to Movember. Remember there is a £500 matching donations period so help us reach our target to raise more for IiMER! Donations can also be made offline but please state when donating offline if it’s specifically for Movember for men’s health  www.justgiving.com/fundraising/nomenbar4me

Thank you for your support!

Calling all fans of Princess Leia 


Jen Govey

“Hi there dear friends.

I am going to dedicate my next DressForME challenge to the memory of Carrie Fisher. I will be spending her birthday, the 21st of October, dressed as Princess Leia.  

If you are a #StarWars fan, please do join me in this DressForME Tribute Challenge for less than the cost of a Glass of Twi’lek at the Cantina on Tatooine and help me raise much needed funds for ME Research.

The #DressForME Challenge:
1. Dress up extraordinary, do something ordinary!
2. Take a photo/film it and upload to social media: Facebook, Twitter, instagram, youtube using the Hashtag #DressForME
3. Donate to my JustGiving page (see bottom) and let me know what you did! 😜
4. Nominate 3 friends to take up the DressForME challenge! 

If you do not wish to dress up, but would like to sponsor me! Please make a donation at my justgiving page and cheer me on. 
I’m raising money for Invest in ME Research. I hope you will join me and we have a little fun on the way! 🙂

Thank you so much for your time and generosity. This will make a huge difference to the lives of those living with ME, plus I will love you forever! 😍Please feel free to nominate your friends or anyone who would be up for a little fancy dress fun for charadee! Much appreciated!!  

Love Jen xxx”

Visit www.justgiving.com/fundraising/dressforme