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 

Walk for ME at Chorlton Water Park

Salford and Trafford ME Group welcome others to join their Walk for ME 2017
Tony Fryer

Tony Fyer and Julie Byron of the Salford and Trafford ME Group (SATMEG) are walking around Chorlton Water Park for May ME awareness and raising funds for Invest in ME Research.

They would love other people to join them on their walk, so please do get in touch if you live in, or know someone who lives in, the Manchester area and would like to be involved. Julie wrote:

Both myself and my son Joe suffer with ME which has robbed us of my job and Joe’s school life. There is no effective treatment for ME and a complete lack of understanding of the condition.

We are hoping that research will lead to greater understanding, treatments and ultimately a cure so we and the 250,000 others struggling to live with ME can claim their lives back.

David, I and the dogs are walking around Chorlton Water Park, this is a relatively short walk but my ME means I’ll need to rest along the way – for many this is an easy walk but for me it will be a challenge.

We’re hoping to be joined by others in the Manchester area to raise awareness as well as much needed funds.

Julie’s JustGiving page is here: www.justgiving.com/fundraising/Julie-Byron

Tony’s JustGiving page is here: www.justgiving.com/fundraising/Tony-Fryer

Julie Byron

Please share widely. Thank you for your support!

About Walk for ME