800k…and Counting to a Million!


WAYS TO DONATE TO INVEST IN ME RESEARCH

We’re off on the next leg of our fundraising journey to raising a million pounds for Invest in ME Research Funds for their Centre of Excellence biomedical research programme aiming to establish diagnostic tests and medical treatments for Myalgic Encephalomyelitis (ME).

We’ve created a new JustGiving fundraising page.

We are on BT MyDonate.

You can also raise donations to Invest in ME Research at no extra cost to you when shopping online, or by buying from sellers donating some or all of their profits to the charity, and simply sharing links on social media helps to raise awareness of the charity’s work on establishing a Centre of Excellence for ME.

Thank you so much for your support!

* June 2018 Status Update on Invest in ME Research Centre of Excellence for ME

* Write to your MP

* Our summary of parliamentary debate on ME treatment and research

Donate to Invest in ME Research

You can donate directly to Invest in ME Research via bank transfer, cheque, text, Big Give, BT MyDonate, Everyclick, JustGiving, PayPal.

Gift Aid gives the charity an extra 25% of your donation from the government if you are a UK tax-payer, so please tick the Gift Aid box when you donate via a fundraising platform, or download a Gift Aid declaration form.

Bank Transfer

Bank: Lloyds TSB Heartsease

Sorting code: 77-66-53

Account number: 22439568

Bank Transfer from outside the UK

IBAN: GB63 LOYD 77665322439568

BIC/SWIFT: LOYDGB21E05

Cheque

Send cheques payable to ‘Invest in ME Research’ to:

Invest in ME Research
PO Box 561,
Eastleigh,
Hampshire,
SO50 0GQ

(add Gift Aid to your donation with Invest in ME Research Gift Aid form)

UK Text IBRF33

£1, £2, £3, £4, £5 or £10

to 70070

(you can add your name and Gift Aid if eligible by text)

Click on the icons below to donate online to Invest in ME Research

or to: paypal@investinme.org



Please help spread the word….

Let’s Do it for ME is a patient-driven campaign launched in 2011 in support of the proposal by UK charity Invest in ME Research to establish a centre of excellence for biomedical research and patient care based in East Anglia, and in collaboration with other leading UK and international biomedical researchers.

We help to raise funds for the biomedical research into Myalgic Encephalomyelitis that the charity is organising and/or funding. Our crowdfunding for specific ME research is the first of its kind in UK and has inspired similar projects in Europe and USA. We have helped to raise over £800,000 enabling the biomedical research strategy to get underway, and we are aiming for £1,000,000.

The current focus of the research is on the role of the immune system, including infection and autoimmunity. The research projects are described here: investinme.org/ce-projoverview.shtml

There is also a scheme for medical students to be directly involved in biomedical research by intercalating in their fourth year: investinme.org/ce-ms-studs.shtml

Invest in ME Research is also renowned for their international conference events, which have grown year on year since the first in 2006, bringing patients and carers together with doctors and scientists and others to galvanise change in the way that ME is researched and treated across the world. Sponsorship is welcome: investinme.eu/index.shtml#sponsors

Invest in ME Research is a founder member of the European ME Alliance of 15 like-minded patient organisations, member of the European Federation of Neurological Associations and formed the European ME Research Group.

Invest in ME Research is run entirely by volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific research into diagnostic tests and treatments for myalgic encephalomyelitis in UK in collaboration with international researchers of world renown.

Please join us in helping them to do all of this for ME.

Thank you for your support!

June 2018 update: Invest in ME Research and the Centre of Excellence for ME were referred to by Sir Henry Bellingham and Sir Edward Davey during a debate in Westminster Hall on 21st June secured by Carol Monaghan. We’ve added a page to the website about this with the relevant clips: Parliamentary Debate on ME research and treatment

Let’s Do It for ME
ldifme.org

in support of Invest in ME Research
investinme.org

Invest in ME Research Centre of Excellence for ME
investinme.org/research-centre.shtml

Invest in ME International Conference & Biomedical Researchers Colloquium
investinme.eu

European ME Research Group
http://www.investinme.org/em-index.shtml

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 www.makemecrafts.com

£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