Special Issue Newsletter from Invest in ME Research

Thanking You on 8 Years of the Let’s Do It for ME Campaign

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Invest in ME Research has been highlighting the development of a Centre of Excellence for ME and its opportunities for some years. We are pleased that the work the charity has put in to form the foundations of research has progressed slowly but surely thanks to our supporters who believed in our strategy and supported our plans. More and more are gradually becoming aware of the foundations that have been laid to make sustainable progress in research and treatment of ME.

Quote by Thomas Carlyle

There are many areas of life where unsung heroes make sacrifices in order to make progress – never desiring recognition or fame or glory for themselves – but just trying to make a difference.

Let’s Do It for ME (LDIFME) is an awareness and fundraising campaign launched in July 2011 by severely ill housebound or bedbound patients. The team met on Facebook and wanted to do something positive and practical to support the proposal by Invest in ME Research to establish a Centre of Excellence for ME based at Norwich Research Park and working in collaboration with other researchers in UK and internationally.

LDIFME have recently celebrated their eighth year and we wished to acknowledge their efforts and achievements – these selfless, unsung heroes who are and have been a credit to people with ME and their families and carers.

The LDIFME team has composed a summary of some of the work performed and the achievements realised over the last eight years.

We wish to thank the LDIFME team and all the supporters of every campaign, every fundraiser, every letter of support, every contribution made to this great grassroots movement- which has made so many innovations over the years to make progress in research, treatment and perception of ME.

Because of their efforts we now have a real possibility to make progress and it is right before us, having already established the following -.

Thank you LDIFME and our supporters for your wonderful efforts.

  • A UK/European hub for biomedical research into ME
  • A clinical trial which will raise the profile of ME and achieve scientific objectives
  • A GP fellowship to educate GPs and create champions in clinical care for people with ME,
  • PhD students introduced to research 
  • Medical students involved in research
  • High-quality biomedical research from top researchers in the leading European research park, complete with university and university hospital,
  • European collaboration
  • A European ME Clinicians group established and working
  • A European ME Researchers group forming
  • International research Colloquiums bringing researchers together.
  • International ME Conferences that allow researchers, clinicians, patient groups and carers to interact and network.

All this achieved by IiMER, LDIFME and our supporters ……. it is already there, just needing funding to maintain.

Read more on the LDIFME site at this link-
http://ldifme.org/2019/07/31/8-years-doing-it-for-me/

We welcome support to continue our work to develop further the hub for biomedical research into ME-

https://www.wonderful.org/charity/investinmeresearch

#CofEforME #LetsCresearch

Thank you all at IiMER from Team LDIFME!

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Invest in ME Research – Let’s Do It!

ME Conference Week 2020

Dates Announced for 2020 Invest in ME Research
London Conference Week Events

Invest in ME Research London Conference Week May 2020

For the 15th consecutive year, May ME Awareness Month will draw to a close with Invest in ME Research international ME Conference Week.

Hashtags #meconferenceweek2020 #IIMEC15 #BRMEC10 #TtF2020

To support medical education and wider awareness, please inform your doctor and anyone you think needs to know about current biomedical research and healthcare. At least then they will be informed even if they can’t attend and they can also watch the CPD-accredited conference presentations online.

Medical Doctor commenting on Invest in ME Research Conference

Conference Day (30 May 2020) is open to anyone interested; patients able to attend, carers, healthcare and other public service professionals, political representatives, journalists etc.

This is by pre-paid ticket only (not on the door on the day) and the price is heavily subsidised by the charity. The conference attracts delegates from four continents and from over 20 countries.

There are sponsorship opportunities.

Lunch at 14th Invest in ME Research Conference May 2019

Rest assured, IiMER Bear ensures events go to plan!

Thinking the Future (27 May 2020) and the Biomedical Research into ME Colloquium (28-29 May 2020) are closed meetings for the researchers, but it may help any professionals involved in your or your child’s care, your MP as well as family and carers, to be aware that ME science is progressing and consequently informing medical education with productive international collaboration. These events have now established a core working group of researchers and facilitated many new collaborations – which was the intention of the meetings.

Professor Ron Davis 14th Invest in ME Research Conference May 2019

The networking that continues at the Invest in ME Research conferences allows other developments to occur long after the conference itself has finished – not just in the UK but also in other countries.

A recent example is the second Thinking The Future conference for early career researchers held April 2019 by NIH in Washington and organised by Dr. Vicky Whittemore and Dr. Andrew Breeden in collaboration with Invest in ME Research, following from the first Thinking the Future in London May 2018.

There is also a pre-conference evening dinner with presentation.

2019 is the first year that Invest in ME Research posted the conference presentations (and pre-conference dinner speech) online instead of DVD. You can find them all here along with the Conference Report.

May 2019 IIMEC14 Presentions Online

DONATE HERE TO SUPPORT THESE IMPORTANT EVENTS

Thank you for supporting Invest in ME Research!

Phoebe & Georgina’s Sponsored Kayak!

By Georgina & Phoebe

Even a live Second World War grenade  couldn’t stop us! 

On Sunday the 28th of July we began our quest to conquer a 25 mile kayak to raise money for Invest In ME Research. This journey consisted of a very early start, a late end to our tiring day and a shed load of rain in between. We started at Little Haywood, near Rugeley with our team of many supportive helpers including one in a kayak too, who without them it wouldn’t have been possible. Our planned route was to follow the Trent & Mersey canal from here through 14 locks and all the way to Willington in Derbyshire 25 miles by canal.

After an hour and a half of non-stop rain Georgina began to feel the cold and we decided it would be the right decision to stop at the next lock to collect a vital and necessary dry jumper. Another hour or so passed and we were nearing Fradley where we knew we would be provided with hot food and supportive friends and family. 

After lunch we knew there was a long way to go but our friend’s banner gave us a helping boost of perseverance. The next 10 miles were rather tough, as we knew we still had a long way to go. As we neared Shobnall Marina we were instructed by police to leave the water as a live grenade had been discovered in the canal by a magnet fisherman. The canal was full of boats as it had been shut for sometime and soon the bomb disposal team were also in attendance! We decided the only option was to walk with the 3 kayaks along the main road to get back to the canal. But thankfully before we reached the road a kind family let us through their garden to get to the canal quicker. 

When we approached the last 4 miles of our trek it was encouraging to see many family members reminding us we could do it. However as time passed it became gradually harder as it was getting later and we were getting more tired.

We finally reached our destination where we were greeted by familiar faces and lots of support. We both were exhausted, proud and ready for a hot drink. We had completed 26.3 miles in total with an average speed of 2.7 mph. Everyone there was very supportive and donated generously. We would like to thank everyone who helped, donated and supported us as this is such an important yet small charity. https://www.wonderful.org/fundraiser/endurancekayaking-49b77049

A huge well done and thank you to Phoebe and Georgina and everyone supporting and cheering on these two stars, undaunted by an unexploded grenade! The girls did a lot of training to lead up to this grueling challenge. They wrote on their fundraising page,

“We are two total novice 13 year olds taking on a huge challenge to kayak 25 miles in order to raise vital funds for biomedical research into ME. We are doing this after Georgina’s sister was hit with this horrid illness age just 14 and became very poorly. ME is a multi- system disease affecting not only the neurological system but also the immune , muscularskeletal, endocrine and cardio vascular. Its life changing in short with a quality of life generally worse than a person with end stage cancer.”

The girls have raised over £2,200 including Gift Aid thanks to their Wonderful sponsors! Wonderful is a fee-free fundraising platform so every penny donated will be spent on vitally-needed biomedical ME research: https://www.wonderful.org/fundraiser/endurancekayaking-49b77049

Thank you Phoebe and Georgina for doing a Kayak for ME!

Thank you for supporting Invest in ME Research!

P.S. To our blog subscribers, apologies that you did not receive our last blog by email, marking 8 Years Doing It for ME!

Win My Golden Ticket

By Alison Orr

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WHO WOULD LIKE TO JOIN ME IN RAISING MONEY FOR INVEST IN ME?

I’d like to create a team of Phoenix Traders all over the country who sell the cards and stationery solely to raise funds for UK charity Invest in ME!

You can become a trader by taking up the Friends and Family option for only £35, which gives you £70 worth of cards to sell, so you make your money back – and more!

You then can buy more stock or use your brochures to take orders in advance only and donate the extra to Invest in ME.

You can also have your own e-commerce website, just like www.cards4investinme.co.uk, for a one-off fee of £25* and sell directly from there. You just need to spread the word.

BONUS

If you’re first to join, you will be the lucky recipient of my Golden Ticket, and will then receive an additional £15 worth of cards to sell, FREE!

The ticket is valid only until 30 June 2016. UPDATE: Congratulations to Elizabeth for winning the Golden Ticket! Click here for another chance to win by 31st July 2016.

You don’t need to do this on a big scale, just, well, sell to your friends and family! It’s ideal for those of us who are housebound.

Once word gets around of the top quality and variety of the Phoenix range AND that it’s raising money for Invest in ME, they’ll all want to buy from you!

And if you sponsor someone you know who wants to do the same, then a percentage of their sales will also come to you for Invest in ME.

*If you sponsor within 14 days of joining, you’ll get your website free!

Of course, if you want to join Phoenix Trading to start your own business and make money for yourself you can do that too. As your sponsor, I will still get a percentage of your sales to donate to Invest in ME. So it’s win win all round!

Take up this challenge in time for the best selling Christmas season (which, believe it or not, is released in August) and see if you can get all your family to send Phoenix Christmas cards and support Invest in ME.

Message me at www.facebook.com/cards4investinME or email at cards4investinme@gmail.com if you’re interested and let’s get going! 🙂

(A big thank you to Alison Orr for doing this and to everyone joining or supporting. Customer feedback has been excellent. See more ways to raise funds for Invest in ME for free and while shopping online at Raise Funds for Free)