Invest in ME Research
Christmas/New Year Fund Appeal Advent Calendar

Funding Research into ME

It is a well known issue that ME has been starved of funding for biomedical research.

This is an issue behind one of the main objectives for IiMER – to kick-start biomedical research funding and move ME research into the mainstream, unaffected by biopsychosocial (BPS) influences in funding policies.

In that task the charity’s supporters have been immensely successful –
initiating the first crowdfunding of a PhD studentship for ME
and following it with more PhD funding,
developing proposals for a clinical trial for ME,
introducing new researchers into the field of ME research,
funding of medical students,
initiating the international research Colloquiums that bring researchers together from fifteen countries and facilitate collaborations that are ongoing,
and the international ME Conference which brings together researchers, clinicians, politicians, healthcare staff, patient groups and patients and carers.

Rather than write a lot of text on Medical Research Council (MRC) policy on funding of research into ME we think a better option is to use Graham McPhee's video which so clearly shows the failings of the MRC over the last decades.

Graham's video from 2014 well illustrates the compromised position that the MRC has maintained with regard to ME - either due to policy decisions influenced by vested interests or due to the mediocrity of advice it has been given by its appointed individuals who have overseen ME research.

Graham's video 8 ME - Science Friction in the UK is an excellent appraisal -

IiMER has written a number of letters to the MRC over the years [].

But the MRC has never engaged or taken ME seriously - sometimes blaming a lack of good proposals for funding and other times giving funding to dubious research which has led to nothing. The MRC has, of course, also funded the flawed debacle called the PACE Trial.

We remain guarded of those connected to the MRC who continue to oversee the policy toward ME research. As with NICE we do not believe that suddenly sprinkling statements with a few “biomedical” and “collaboration” iterations means much of substance. Patients and carers need to be wise to what has occurred before from these same people and not blindly accept that things are changing for the better.

We will have to see.

What is certain regarding funding is that it will be necessary for a charity such as IiMER and our European ME Alliance partners to continue to raise funds for biomedical research – to ensure that the pressure is kept on to avoid patients being led down the garden path yet again.

So patients and carers have to do it themselves.

Philanthropy and ME Philanthropy – “the desire to promote the welfare of others, expressed especially by the generous donation of money to good causes” Philanthropists may be thought of as wealthy, individuals or organisations contributing to causes, for reasons either personal or financial or from expediency.

But philanthropy comes in all flavours and different guises and not always from obvious quarters, and not always by means of donating money. The philanthropy given and displayed by supporters of Invest in ME Research is of the highest level.

Many of the charity’s supporters are very ill and have little means of financially contributing – left with little financial possibilities due to the ravages of the disease on them or their family, exacerbated by punitive and immoral government policies on welfare benefits to disabled people.

Yet their efforts made to support the charity and its research has changed the landscape of UK research into this disease – forcing biomedical research into the mainstream when, for years, little was done to make progress by existing establishment organisations.

As the charity initiated a plan to develop a Centre of Excellence for ME an idea was born by Jo Best and helped on by Jan Laverick and Paul Kayes – all ill ME patients.

Instead of continually reacting to what others were doing or saying they decided to take a proactive approach to fund research.

A campaign was started to support the Invest in ME Research proposal for the Centre of Excellence for ME.

The difference with this campaign? To use the skills and ideas of patients who want more than anything else to regain their health.

By harnessing these ideas and enabling people to feel positive about doing something themselves to effect change then the campaign would be turned into something which was fun.

Positive campaigning – with an objective to fund sorely needed translational biomedical research into ME and to harness patient power to influence ME research – something which had been missing from the equation.

The Let's Do It For ME initiative is a positive and proactive patient-driven campaign to raise awareness and vital funds for the UK Centre of Excellence for ME performing translational biomedical ME research, clinical assessment, diagnosis and treatment for patients, and training and information for healthcare staff based at the Norwich Research Park in the UK but working collaboratively with international biomedical researchers.

The Let’s Do It For ME campaign has been running since 2011.

The web address is

The Let’s Do It for ME (LDIFME) campaign and our core group of supporters are helping to fashion a change in ME research and this determination and enthusiasm will influence researchers – both within the ME research area and those from outside.

One of the LDIFME team - Jan Laverick - was responsible for getting her MP involved in parliament - long before the current parliamentary activity was taking place

Meanwhile our Christmas / New Year Fund Appeal continues and we will have news soon of another contribution.

Thanks to all who have supported this Fund Appeal in whatever way they could - either by donating or raising awareness to others.

Further Reading:

  1. Invest in ME Research Christmas/New Year Fund Appeal Press Release

  2. Let's Do It For ME

  3. Invest in ME Research Fundraising - Current

  4. Funding poster

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