1st of the month - the day to donate £1 to 1st Class ME Research!

A Pound For Research

The original idea by Ruth Gilchrist for One Day - One Pound was for as many people as possible to donate just £1 on May 12th International ME Awareness Day to show support and to help raise vital funds for 1st class biomedical research for tests and treatments for ME (myalgic encephalomyelitis).  We extended this to include a monthly 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 charity that our cause supports - Invest in ME (also now registered as Invest in ME Research). 

Gift Aid is an extra 25% of your donation from the government if you are a UK tax-payer,

so don't forget to tick the Gift Aid box when you donate if this applies to you.

If in UK you can text APFR99 

£1-£5 or £10

to 70070 

(JustTextGiving)

Text donations add to the total raised on the Just Giving Page.

You can add your name and Gift Aid if eligible by text. 

You can also donate (worldwide) 

any amount (minimum of £2) via JustGiving

Other options to donate £1 or more .. 

Paypal

To: paypal@investinme.org

Bank Transfer

Bank: Lloyds TSB Eastleigh

Sorting code: 30-92-94

Account number: 02252685

Bank Transfer from outside the UK 

IBAN: GB63 Loyd 3092 9402 2526 85

BIC/SWIFT: LOYDGB21209

Cheque

Send cheques payable to ‘Invest in ME’ to:

Invest in ME 

PO Box 561,

Eastleigh,

Hampshire,

SO50 0GQ

(add Gift Aid to your donation with Invest in ME’s 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 independent 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 the development of the centre of excellence projects. The foundation study investigating the role of gut permeability in ME got underway in 2013 thanks to achieving our initial fundraising target of £100k (new target £200k) The next £50k fully funded a study of B-cells based at UCL prior to a clinical trial (new target £450k). 

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 £500,000 for the IIME Research strategy to develop and are aiming for £1000,000. The current focus of the research is on the role of the immune system, including infection and autoimmunity. 

Invest in ME is run entirely by unpaid volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific biomedical 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 International Conference (IIMEC)

investinme.eu

IIME/UCL/UK rituximab trial 

ukrituximabtrial.org

You can follow our cause @Letsdoit4ME on Twitter and find us on Facebook

Thank-you for your support!

Let's March on a Million!

We Can Do It For ME!

We said last month that 2015 marks the 10th year of Invest in ME charity and the 10th of their world-renowned international biomedical research conferences. Well, February was a landmark month for Let's Do It For ME. We raced past the milestone of £500,000 - yes, HALF A MILLION POUNDS - in real money!

This has allowed Invest in ME to initiate possibly the two most important research projects for ME in the UK: a gut microbiota study in the Norwich Research Park with IFR/UEA and a project leading to a clinical trial of the rituximab drug in cooperation with UCL.

March 2015 begins with a total of £502,000 donated or raised or pledged for Invest in ME Biomedical Research Funds since we launched our campaign to help the charity fulfil its plans to establish a centre of excellence for ME (myalgic encephalomyelitis).

This means we begin March at £502,000 on the way to the next target of a
magic million! How fantastic would it be to reach £1m in May 2016?  

A wonderful way to help celebrate the 10th anniversary of Invest in ME Charity.  Can we do it? With you and the help of your equally amazing friends and families .. YES WE CAN!

Kindly summed up in last Friday's edition of this unmissable weekly column: 

"The reason I’m so proud of one of the charities I support Invest In ME is because it’s run entirely by a few volunteers who themselves either suffer with the illness or are parents of children with ME. There are no salaries; every penny that’s raised goes where it should go and alongside the Lets Do It For ME team who are also voluntary, what they have achieved is nothing short of phenomenal."  Stacy Hart, Watford Observer. 

The Let's Do It For ME website is being revamped and we'll post more

March updates soon. Meanwhile, you can also find us on Facebook or
follow us on Twitter @Letsdoit4ME.  Do let us know if you have plans 

or events you'd like us to highlight or any ways you'd like to help. Our email is:
fundraising4me@gmail.com  Ways to simply donate are at the end of this blog. 

The press release issued by Invest in ME on 21st February may be read
in full on their website or in pdf. Here's an extract:

Five years ago Invest in ME created a proposal for a Centre of Excellence for translational biomedical ME research. The centre would provide clinical assessment, diagnosis and treatment for patients andtraining and information for healthcare staff and work collaboratively with international researchers. 

With comparatively few resources the charity (all volunteers) and its supporters have established a foundation which could provide a real basis for future development and which will lead to better understanding and treatments for this physical illness. 

The model we have is, with enough support, able to continue and expand and augment and achieve a real breakthrough in ME research in UK and Europe and the world.

Let’s Do It for ME is a patient-driven campaign to raise awareness and vital funds for the centre of excellence. The campaign was set up in2011 and is run by ME patients who have the same objectives as the charity - high quality biomedical research resulting in a better understanding of the pathogenesis of ME as well as in the development of appropriate treatments. The campaign has supporters from all over the world and it has forced change through imaginative ideas, selfless efforts, dedication and positivity - a Can Do approach to a disease where so many have suffered unnecessarily for too long.

It is the Let's Do It for ME spirit - empowerment of patients and their families for action, a Can Do approach and positive campaigning and fundraising.

Together we are trying to improve the future for people with ME and their families and after reaching a milestone of £1/2 MILLION we are ready to reach our next target of £1 MILLION.

Our thanks go to the patients and their carers and friends and relatives who have campaigned for change and forced action to be taken and please join us in reaching our next target.

With enough support we can change things forever.

One small charity, one BIG Cause, one band of supporters – progress – change.  “Things do not have to be the way they are – we can change things.” - Dr Ian Gibson.

Let’s Do Change. Let’s Do It For ME.

Contact: info@investinme.org tel: 02380 251719 or 07759 349743

*****

A BIG THANK YOU FOR YOUR SUPPORT!

March 5th update - matching donation offer - http://bit.ly/1A15euJ

Ways To Donate

(add Gift Aid if UK Tax-Payer)

Paypal

paypal@investinme.org

Bank Transfer

Bank: Lloyds TSB Eastleigh

Sorting code: 30-92-94

Account number: 02252685

Bank Transfer from outside the UK

IBAN: GB63 Loyd 3092 9402 2526 85

BIC/SWIFT: LOYDGB21209

Cheque

Payable to ‘Invest in ME’ to:

Invest in ME

PO Box 561,

Eastleigh,

Hampshire,

SO50 0GQ

UK tax-payers can add Gift Aid to donations - Invest in ME Gift Aid form

JustGiving 

(worldwide - minimum £2 donations)

https://www.justgiving.com/ldifme

JustTextGiving 

(UK only)

Text: BMER99 - £1-£5 or £10 - to 70070 

You can choose to add your name and Gift Aid by text if eligible 

Text donations add to the totals on the Just Giving link above.

Other Ways to Help or Donate to Invest in ME 

http://www.investinme.org/helpus.htm

March 9th update - IIME has kindly added the above as a newsletter on their website - http://www.investinme.org/IIME-Newslet-1503-01.htm

Research Team for Rituximab Study - Statements By Professor Jonathan Edwards and Invest in ME

UK rituximab Trial - Statements By Professor Jonathan Edwards and Invest in ME - July 2013

www.investinme.org

Professor Jo Edwards My interest in ME/CFS was sparked when I was invited, unexpectedly, by IiME to the IiMEC8 Conference in May. The meeting was impressive: not just professional science, but at a high level. I was particularly impressed that negative findings were given adequate weight. It became clear to me that there was a community committed to identifying and encouraging the very best research in a difficult and neglected field. I was aware of the study by Fluge and Mella, using rituximab. I had not been surprised to see some patients respond, but the type of response, which was similar to what we had found in rheumatoid arthritis fifteen years ago, caught my attention. In fact, the situation seemed very reminiscent of the time when we first started to get results with targeted therapy in rheumatoid arthritis. We had the benefit of more immunological clues then, but on the other hand, the experience we have gained over the last decade now makes things easier in other ways. My limited understanding of ME/CFS is that, like arthritis, it is probably several diseases with similar symptoms. Most colleagues who specialise in ME/CFS seem to agree. What the Fluge/Mella study suggests is that perhaps half of those suffering from these symptoms may have a B cell-dependent autoimmune disease. A recent study by Dr Amolak Bansal and colleagues also suggests that B cells may be functioning abnormally in a significant proportion of people with ME/CFS. To me, a key feature of this approach, unlike chasing one particular virus or gene, is that, if confirmed, it will provide a broad base for understanding disease mechanisms. Even if rituximab is a cumbersome treatment in the short term its use may not only help a good proportion of patients directly but also begin to show us how to divide ME/CFS into different groups. So it may be useful even for those whose disease does not respond because once separated out from B cell-dependent disease the role of other factors such as NK cell function or cerebral blood flow may become clear. Looking at the research directions currently being pursued in ME/CFS, I am in no doubt that the usage of rituximab is one of the most promising. There is clearly enthusiasm for further trials. However, rituximab is not an easy drug to use and many doctors do not feel confident with using it. This may explain why studies have been slow to gain momentum outside Norway. Safe and effective usage requires understanding of B cell life history and function. Each condition has to be considered differently, especially in terms of when treatment is repeated. But with experience its use is very effective and probably as safe as most drugs. After the IiME Conference I began thinking about my personal experience of patients and friends with ME/CFS. I was sent a copy of ‘Lost Voices ‘ by IiME, which made me think more. It struck me that, whether or not results are positive, further trials of rituximab for ME/CFS should be encouraged not only because impact on life for those affected can be so severe but also because further trials could give clues to disease mechanism. I am retired and would not be personally involved but have suggested to IiME that I would be happy to advise and to encourage others to set up a trial. My feeling is that a trial should be carried out somewhere with detailed experience in use of rituximab in autoimmune conditions. The UCL service set up when we started treating rheumatoid arthritis, lupus and a range of other conditions has the most extensive experience. There is laboratory expertise in B cell immunology under Dr Jo Cambridge. UCL also has a new Clinical Trials Research Facility with staff appointed to manage trials of this sort. Importantly, there is enthusiasm amongst local teams for a rituximab ME/CFS trial. I have suggested to IiME that this would be the ideal centre for such a trial, to be set up in collaboration with clinicians with expertise in ME/CFS from around London, and in particular Dr Bansal. IiME have accepted this and this is the planned and preferred research base for this trial. Clinical trials are costly. The trial planned in Norway to confirm the results from Fluge and Mella’s initial trial will cost something like £1-2M pounds. I think it would be most sensible to set up a smaller scale trial initially in the UK with a focus on trying to identify which patients are most likely to benefit. A trial treating about 30 patients, giving useful scientific information should hopefully be feasible for around £3-400,000. Trial design will require careful thought and some further preliminary laboratory work is likely to be needed before it is clear what design would be optimal. Nevertheless, I am optimistic that a trial could be set up without major delay if funds can be raised. If the role of B cells in at least some ME/CFS, suggested by Fluge and Mella’s study, can be confirmed I think there is a genuine chance of getting to grips with the mechanism of the disease. From there on things can only get easier. Statement from Invest in ME: The statement above from Professor Edwards is an astonishing opportunity for those patients with ME and their families. To have somebody of Professor Edwards' standing produce such a statement, after agreeing to advise the charity following the IIMEC8 conference, justifies completely the conference theme of Mainstreaming ME Research. This is a potential breakthrough for state-of-the-art biomedical research into ME. We believe this study would add great value to other similar research being performed elsewhere. It would also put the UK into the forefront of ME research. There is no greater expert able to advise on a trial of rituximab than Professor Edwards who formally established the validity of B cell depletion in autoimmune disorders via his groundbreaking rituximab trials. At the Biomedical Research into ME Collaborative meeting (BRMEC) organised by Invest in ME and the Alison Hunter Memorial Foundation Dr Jo Cambridge from UCL was invited by the charity to attend and present to the 40 researchers from nine countries gathered in London for the meeting. We felt it important to get the best advice possible to help with this area of ME research. Dr Cambridge added an enormous amount to the meeting – followed by a sincere and positive approach to progressing research. UCL, as Professor Edwards has explained, has first-class facilities and we believe this opportunity is unique in the UK. If the UK patient community wish to have a rituximab study then this is as good as it gets. With the clinical team and Dr Cambridge at UCL performing this work, and with Professor Edwards as advisor, we are sure that a huge leap in understanding ME will be possible. IiME have managed to work with the experts to set up this possibility. As Professor Edwards states “a trial could be set up without major delay if funds can be raised”. Our fundraising campaign now must begin in earnest. We invite everyone to get behind this UK rituximab study and support us. We welcome contributions from other organisations and companies and individuals. The quality of the researchers and the facilities is beyond doubt. IiME will contact other organisations to invite them to donate to this cause. One organisation has already indicated it will support a rituximab trial and we have had a pledge from another organisation to help.  We now have the researchers willing to perform this trial in the UK. The quality of the researchers and the facilities at their disposal place the capability of the UCL team to perform this trial beyond doubt. What Next? There is enthusiasm for setting up a study at UCL. UCL can take this forward in collaboration with Dr Bansal and with close liaison, including visits, with Bergen. This has been agreed. A meeting has been arranged for Professor Edwards to visit Bergen to discuss with Dr Fluge. Further trips by the UCL team would be a possibility and will be arranged by the charity. We welcome this as this will undoubtedly help both the Norwegian and the UK studies. We need to raise funding for this study so we urge all our supporters, and others who wish to have a UK rituximab trial or wish to advance biomedical research into ME, to raise awareness and interest from as many sources as possible and support us in this venture. This UK rituximab study has been initiated by IiME and the UCL staff who were at our conference and BRMEC research meeting. The best research team possible to undertake this trial is able to perform this. We need now simply to fund this. Please support us in this venture. ........................................................................................................ This is all wonderful news and our immensely grateful thanks go to Professor Edwards and Invest in ME, Dr Cambridge and the UCL team, Dr Bansal, Professor Mella, and all involved in planning this important research.  Now all we have to do is help fund it so - Let's do it for ME!     UPDATE from IiME: "Thanks to everyone supporting us with this.  We have had a pledge from another organisation to help.  More details later.  We will be contacting other organisations and support groups to ask for their support for our project".   Professor Edwards: " IiME take the credit for having knocked the right heads together and got them thinking of getting something up and running - pretty impressive to my mind, because there are all sorts of reasons why those people might choose some easier things to think about! So now what we need is for everyone to do what they can.  Dr Shepherd has indicated his enthusiasm for doing what he can. If we can get the MRC interested now or later that will help" Dr. Charles Shephered: "I hope this is clear: Invest in ME should be congratulated for what they have done here." To donate to the IiME UK Rituximab Research Fund - click here