Share your experiences of severe ME!

For this severe ME day, an initiative run by the 25% ME group and held on August 8th in honour of Sophia Mirzas birthday, lets do it for ME wants your stories of severe ME/CFS. They’ll be included in a blog post on the LDIFME blog to raise awareness.

Send in your stories, preferably along with a photo of yourself, to rosaamor1@icloud.com putting Severe ME day as the subject. 

If your not sure what to write, consider these questions 

  • When were you first diagnosed with ME?
  • What are your symptoms?
  • How does your ME affect your everyday life?
  • What, if any, medical services/treatments have you found helpful or unhelpful and why?
  • What are your dreams/aspirations for the future?

Thank you for sharing 

June FUNdraising tip

Discover how to raise funds for free simply by browsing and shopping online this June! This can be done via easyfundraising, give as you live and amazon 

With Easyfundraising you shop through their website’s links, but still directly with the retailers as usual, at no extra cost to yourself. Make sure to download the “find and remind” toolbar to alert you when there’s a donation option from a retailer. There’s also an easyfundraising app for iPhone and iPad www.easyfundraising.org.uk/causes/investinme

Sign up to our Give as you live fundraising group. By downloading the toolbar you can automatically raise funds for free whilst shopping as it runs in the background. There is also a Give As You Live App for Tablet or Mobile phone www.everyclick.com/letsdoitforme/

There’s a separate referral link for Amazon as transactions from the other schemes weren’t always registering. Just add it to your favourites! www.amazon.co.uk/?_encoding=UTF8&camp=1634&creative=6738&linkCode=ur2&tag=ininme-21

ldifme.org/raise-funds-for-free

Finally remember our “one day, one pound” scheme for the first day of each month. Every penny counts! www.justgiving.com/fundraising/onedayonepound

Crowdfunding Update!

£700,00k

ME Awareness Month May 2017 marks the next milestone on our journey towards raising money for the specific biomedical studies of the Invest in ME Research Centre of Excellence for Myalgic Encephalomyelitis.

Huge thanks to each and every person (and pet) whose donations, sponsorship, and fundraising efforts for Invest in ME Research enabled the charity’s biomedical research programme to begin in 2013 and to proceed without delays.

We desperately need diagnostic tests and medical treatment options for this disease to be available in the UK, and we patients and families can see that the Invest in ME Research Centre of Excellence is on the fast-track to making this happen, but they cannot do it without your help.

Please keep the momentum going!

This is just a quick funding update so we plan to write more soon.

Invest in ME Research on Gut Microbiota in ME:
http://www.investinme.org/ce-news-1705-03.shtml

Invest in ME Research on B-cells/Rituximab Trial for ME:
http://www.investinme.org/ce-news-1705-02.shtml

Well done and thank you for your support!

Razor is rocking out this ME awareness month

Lewis’s school band, Razor, is holding an hour long gig to raise funds for IiMER, Lewis, aged 13, will be playing the drums in support of his older sister Maddie who has ME

His mother says of ME;

“Many children lose their identity, self worth , friends, ability to cope with every day life because of the terrible way that this illness preys apon them. The unrelenting pain, the sickness , the fatigue , the head aches. Unable to walk or go outside in the sunshine. Do what we take for granted every day. 

So please even a pound would help boost funds to help Maddie have a better life and maybe if enough funds are raised a cure could be found. ”

Visit www.justgiving.com/fundraising/Alyson-Sharpe1 to donate 

Donate £1 to 1st Class ME Research

The original idea by Ruth Gilchrist for One Day – One Pound and event by Louise Cairns was for as many people as possible to donate just £1 on May 12th International ME Awareness Day to the charity Invest in ME Research to show support and help raise vital funds for 1st class biomedical research for tests and treatments for ME (Myalgic Encephalomyelitis). We extended this to include a reminder of our ongoing fundraising for this vital cause on the 1st of each month.

Donations at any time are welcome. Every £1 makes a big difference to the vital work of this small charity – Invest in ME Research.

Donation options include JustGiving, PayPal, Bank Transfer, Cheque, or JustTextGiving. They are also registered with Big Give, and BT mydonate

Gift Aid is 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 if this applies to you.

DONATION OPTIONS

JustGiving

UK Text APFR99

£1-£5 or £10

to 70070

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

or donate from any country, any amount from £2 here:

https://www.justgiving.com/onedayonepound/

PayPal

To: paypal@investinme.org

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)



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 translational research and patient care based around Norwich Research Park in East Anglia; the first of its kind in UK/Europe 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 in their development of the centre of excellence. 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 now helped to raise over £700,000 for the IiME Research strategy to develop and are aiming for £1,000,000.

The current focus of the research is on the role of the immune system, including infection and autoimmunity. Two major research projects are on the role of the gut microbiome and research on B-cells leading to a UK clinical treatment trial of rituximab. There is also a scheme for medical students.

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.

Thank you for your support.

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

IIME B-cell / Rituximab Research
ukrituximabtrial.org