IIMEC13 DVD Out Now

Invest in ME Research have begun distribution of the IIMEC13 DVD.

The DVD set includes full presentations at the charity’s 13th international biomedical research conference held in Westminster, London in June 2018, plus the pre-conference evening dinner speech this year by Carol Head, President of the USA organisation Solve ME/CFS Initiative. Prevous pre-conference dinner speakers from across the pond include Hillary Johnson, Linda Tannenbaum, David Tuller. DVDs of past conferences are also available.

David Meachen at DJM Digital has performed another excellent job in professionally authoring these conference DVDs which may be used to obtain points for continual professional development. David has been working with the charity since the first conference in 2006 to produce the best possible record of these CPD-accredited conferences. The DVDs are heavily subsidised by the charity in order to make them available to as many patients, patient groups, carers and researchers, healthcare, media and politicians as possible.

IIMEC13 marks 13 years of commitment to biomedical research into ME by Invest in ME Research. A remarkable achievement, level of commitment and perseverance by a small group of patients and carers, ably supported by scientists and clinicians working to the same high professional standards.

“Invest in ME has been able to increase awareness and disseminate knowledge to scientists, clinicians, and patients within the ME community. With limited resources, but unlimited creativity and imagination, these patients and their supporters have showed the world what can be done. They are an inspiration for the world.” Dr. Leonard A. Jason and Zachary A. Siegel.

The 2018 conference attracted delegates from twenty different countries – from Europe, North America, Japan and Australasia.

The conference day was preceded by the 8th Invest in ME Research International Biomedical Research into ME Colloquium – a two day closed researchers’ meeting with almost 100 eminent researchers invited to attend from fourteen countries. Through the multiple international collaborations the charity has formed there was an incredibly positive atmosphere beginning with the BRMEC8 Colloquium and continuing through the IIMEC13 Conference days.

The charity added an extra event this year, a day for young or early career biomedical researchers, called Thinking The Future. Dr. Vicky Whittemore announced at the conference that NIH would follow suit.

Organisations assiting Invest in ME Research in sponsoring IIMEC13 were Solve ME/CFS Initiative, RME Sverige, Norges ME Forening, Irish ME Trust.

Solve ME/CFS Initiative also supported Katya Lavine, Stanford ME/CFS Initiative researcher, with an SMCI MeetME Travel Award to attend the events. Katya’s excellent account of the events is here and she concluded,

“I am even more excited about the momentum of this community, the groundbreaking research on the horizon, and the brilliant minds devoting their lives to this disease. Solving M.E. is more than an issue of science. It is an issue of justice. Moving forward humbly in my own work on M.E., I am grateful for my time at IIME and for the passionate international community I have the chance to work alongside.”

The IIMEC13 conference showed the major initiatives and research taking place to continue an international collaborative strategy for biomedical research into Myalgic Encephalomyelitis which Invest in ME Research has been championing since after the 2007 #IIMEC2 conference.

The presentation by Professor Theoharis Theoharides was preceded by a moving tribute to the late Anne Örtegren, outstanding advocate, great friend to Invest in ME Research and staunch supporter of the Let’s Do It for ME campaign.

Just a few weeks before her death Anne wrote,

“I’ve followed LDIFME for all these years and you do an amazing job!

I also feel very strongly about IiMER and am just in awe of what everyone involved have accomplished. Where would we be without them/you?”

On a personal note to regular followers of our blog and supporters of our campaign to help raise awareness and funds for the Invest in ME Research Centre of Excellence for ME, it is obviously terribly hard to lose our friends and fellow supporters, and we hope you are ok.

Every time we are knocked down by another loss, we have no choice as a team but to get back up again and keep going until we have the medical tests and treatments that we need, not only to honour the lives lost, but for future generations and of course, in the hope that we may regain our own lives.

So we are back on the road to reaching the next £200k of our £1,000,000 target to support next phases of the biomedical research programme of the Invest in ME Research Centre of Excellence for ME. If you’d like to be more involved in supporting our campaign please contact us or the charity directly. Whether you been with us over the past seven years since we launched our campaign or are newly aboard, we sincerely thank you for your suppport.

The agenda pictured below shows the IIMEC13 speakers and topics. Professor Simon Carding was unable to attend, so Fiona Newberry and Katharine Seton spoke on his behalf and that of fellow PhD candidate Shen-Yuan Hsieh.

You can find the full agenda and conference reports on the IiMER Conference website and a report by Dr. Rosamund Vallings & Dr. Sarah Dalziel here.

IIMEC13 gallery and comments by delegates here.

The Journal of IiMER is here.

Order the DVD here.

If possible, perhaps buy a copy for your doctor or MP or let them know this is available? Your doctor can obtain CPD points for watching and your MP can be better informed in preparation for a full parliamentary debate on ME research and treatment in the House of Commons, which Carol Monaghan MP is pressing for. See our summary the 3-hour Westminster Hall debate in June here and our blog about writing to your MP here. The book by former MP and Chair of IIMEC13, Dr. Ian Gibson and his friend Elaine Sherriffs is available on Amazon, search ‘Science, Politics and ME’ and raise an extra donation to Invest in ME Research at no extra cost to you by buying via Amazon Smile or this referral link.

We end with a selection of tweets of the Invest in ME Research Conference events, starting with AA hero Scott apparently saving the day!

We have never been to the conference ourselves, by the way, as we are mostly long-term house or bedbound by ME, so we very much appreciate supporters able to be there in person and keeping us involved on Facebook or Twitter #IIMEC13 #BRMEC8 #ThinkingTheFuture2018 including ever-so-modest IIMER Bear, who debuted at last year’s conference, Emma Joy whose husband Adam has since cycled from London to Paris in 22 hours fundraising for IiME Research, Mike Harley flying the flag and Nancy Van Hoylandt brandishing the umbrella for the European ME Alliance and European Federation of Neurological Associations.

Thanks so much to everyone supporting Invest in ME Research.

Let’s keep doing it for ME.



IIMEC13 DVD
Journal of IiMER
Donate to IiME Research

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

Dear MP…

In a Westminster Hall debate on ME treatment and research on 21 June 2018, Sir Henry Bellingham, MP for North West Norfolk, called for government support for the Invest in ME Research Centre of Excellence for Myalgic Encephalomyelitis.

Sir Edward Davey (Kingston and Surbiton) and Dr. David Drew (Stroud) voiced their agreement, and Steve Brine, Under-Secretary of State for Health and Social Care, said it sounds very promising.

We’ve drafted a letter, which you are welcome to copy and paste or adapt to send your own MP to inform or update them on the progress of the Centre of Excellence and to ask them to support Sir Henry’s call on your behalf.

To find your MP’s contact details, put your postcode in the box on this page.

*****************************************************

Dear (MP name),

I write to request your support for the Invest in ME Research Centre of Excellence for ME (Myalgic Encephalomyelitis), as highlighted by Sir Henry Bellingham during a Westminster Hall debate on ME treatment and research on 21 June 2018.

Two main points of note are that the research and treatment of ME is a cross-party matter of public health for people and public services in every constituency; and that the Invest in ME Research Centre of Excellence for ME is of national and international importance.

The proposal to establish a hub-and-spoke model UK Centre of Excellence for ME, based at Norwich Research Park with international cooperation, was published May 2010 by UK charity Invest in ME Research.

The work is now well underway, currently involving researchers based in Norwich, Oxford, Cambridge, London, Surrey, and in collaboration with other countries.

As noted by Sir Henry Bellingham:

“That was funded by patients and carers, who raised a staggering £800,000 for what will be groundbreaking, world-class research.”

“Invest in ME Research has set up a centre of excellence for research in the Norwich Research Park, and it is planning to create a hub for European biomedical research, which is good news indeed. It already has five PhD students and is hoping to push out a consultant-led clinical service. Here we have the infrastructure and base for that extra Government funding, to build on the money that has been raised by patients and carers.”

“I hope the hon. Gentleman will support my campaign to get the Government to invest in the Invest in ME Research Centre of Excellence in Norwich. I did not mention that it has a really good chance of forging first-class links with not only European biomedical research institutes but institutes in the United States and Asia, where other groundbreaking research is being done. The Government should support and invest in success.”

Please read the June 2018 update on the Invest in ME Research Centre of Excellence, a bullet-point summary of the current status of this project, which has impressed USA’s NIH and is deserving of support by all UK political representatives and the relevant government departments: http://www.investinme.org/ce-cofeforme.shtml#exsu

The summary concludes on page 7:

“Invest in ME Research is therefore asking for support from MPs to engage actively with this project with a view to securing the final, and vital, elements of the UK Centre of Excellence for ME and create a future whereby people with ME may be given back their lives.”

The Let’s Do It for ME campaign aims to raise awareness of the Invest in ME Research Centre of Excellence for ME and a summary of the Westminster Hall debate with relevant extracts is here: http://ldifme.org/parliamentary-debate-on-me-research-and-treatment/

Thank you for reading and I look forward to your reply.

Yours sincerely,

(Your name and address)

******************************************************

As stated in the letter, our summary of the debate is here and includes the extracts below. Hansard transcripts of the extracts.

Sir Henry Bellingham

Extract: https://goo.gl/yvW33P

Hansard Transcript: https://goo.gl/B8mDdw

Sir Edward Davey, Andrew Selous, Sir Henry Bellingham

Extract: https://goo.gl/XbwWZW

Hansard Transcript:https://goo.gl/QKQmav

Sir Henry Bellingham, Dr David Drew

Extract: https://goo.gl/gZSVRe

Hansard Transcript:https://goo.gl/NaUJrf

Steve Brine (Parliamentary Under-Secretary of State for Health and Social Care)

Hansard Transcript: https://goo.gl/VMT96v

Click here to read our full summary of the debate.

Donate here to help us make it to a £million.

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

What’s Up TV Wants Your Voice for ME

Message from Invest in ME Research

Invest in ME Research has been contacted by a researcher on a Sky One programme called What’s Up TV – an arts and culture magazine show with a reach of 100,000 households, and with a young demographic of 16-25.

Every series they pick a campaign, this is generally a cause they feel deserves more attention, and this series their campaign is M.E.

As part of this campaign they are producing an item on M.E.

This item will give an introduction about M.E. to viewers – how it affects patients, and the challenges the community currently faces.

As part of this they wish to feature the voices of people who live with the condition – this would entail people sending in short videos (no more than 20 seconds) of individuals speaking about the condition and their life to camera.

Therefore, we are sharing this request to our supporters.

If you are able to share a very short video talking about your experience – how having M.E. has changed your life, the medical treatment and support made available, and the level awareness that you believe M.E. has – then these videos will be cut together and used as part of the item.

The videos should be as high quality as possible, but a webcam recording would be fine. They can be sent to this email address, preferably in MP4 form – Robyn@whatsuptv.co.uk

To summarise
– the experience of anyone who lives with M.E.
– under 20 seconds
– they would need them by Tuesday 29th May
– email to Robyn@whatsuptv.co.uk

Web site is https://www.whatsuptv.co.uk/