Invest in ME Research
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Funding Research into ME


Funding for research has always been difficult and without the possibilities of EU funding may well be far worse in the future.

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

This has been 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 making it five PhDs so far
  • -initiating development of a Centre of Excellence for ME
  • -developing proposals for, and completely funding a clinical trial and for ME - the only clinical trial in the UK at this time,
  • -introducing new researchers into the field of ME research,
  • -funding of medical students,
  • -funding for a clinical fellowship for ME
  • -initiating the international research Colloquiums that brings researchers together from around the world and facilitate collaborations that are ongoing
  • -and the international ME Conferences that brings together researchers, clinicians, politicians, healthcare staff, patient groups and patients and carers
  • -initiating the formation of a European ME collaborative group for biomedical researchers and another for clinicians
  • -working with European charities and patient organisations to create a voice in Europe for people with ME

All of these have assisted the development of an environment that can attract further funding, as well as creating other benefits such as better education and information


Graham McPhee's video - ME - Science Friction in the UK - from 2014 was an excellent appraisal and is still relevant, and well illustrates the compromised establishment position that has been maintained with regard to ME - either due to policy decisions influenced by vested interests or due to the lack of any action from those appointed individuals who have overseen ME research.

That video may be slightly dated now - although it serves the purpose of chronicling what has happened before.

IiMER wrote a number of letters to the MRC over the years

But the MRC never engaged or took 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.

That will eventually change - slightly. Indeed there has been an award from the MRC recently for a research project - although in somewhat nepotistic circumstances.

However, it would be foolhardy to believe that one research project will magically provide any or all of the data required to find the cause(s) of ME.
People believing that to be the case may well be looking forward to years of silence and inactivity before any results are available.

There is unlikely to be any further, major funding for ME due to competition from other areas post-Brexit, even apart from covid-19 research.

Yet even if such a project was well-intentioned for patients and was a valid project in its own right, then it would still not do more than scratch the surface of the requirement.

And that may pacify most patients for a few years more - after all, what is a few more years for patients who have waited decades?.

Well actually it is everything!

We remain guarded of those connected to the funding agencies who continue to oversee any policy toward ME research. They have had years of opportunity to do something but failed.

Patients and carers may be well advised to be wise to what has occurred before from these same people and not blindly accept that things are changing for the better.

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.

The recent press release from IiMER announcing the pledge of £625,000 for biomedical research and including a clinical trial, to be carried out in Norwich Research Park demonstrates what a charity with amazing supporters can accomplish - click here

And because it is connected with a strategy of developing a Centre of Excellence - supported by a European ME Research Group and building the expertise in clinical care, such as the European ME Clinicians Council, then it seems far more valid an approach.


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.

Friends

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.

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

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

The web address is http://ldifme.org

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.

What a privilege it has been to be associated with them.



Further Reading:

  1. Let's Do It For ME

  2. Invest in ME Research Fundraising - Current

  3. Funding poster

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