Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
The All-Party Parliamentary Group (APPG) on M.E. held its' first meeting on Tuesday 3rd March where biomedical research was discussed.
Twenty MPs attended or sent staff to hear about the urgent need for biomedical research, following its inaugural AGM in January.
Chaired by Carol Monaghan MP, the meeting was the first in a series that will focus on key issues facing people with M.E. in the UK, and will culminate in a parliamentary report setting out actions for change.
Members attending heard short presentations from Professor Chris Ponting, University of Edinburgh; Professor Julia Newton, Newcastle University; and Dr Eliana Lacerda, CureME Biobank, before taking the opportunity to ask questions.
Professor Julia Newton
Professor Newton began by sharing the story of one of her patients with M.E., who waited more than 10 years for a diagnosis, and how patients were being badly let down by lack of high-quality research into both causation and treatment.
Describing symptoms involving the brain, muscles, and immune system, Professor Newton highlighted how clear abnormalities are being found.
However, these findings are often based on small research studies with small cohorts, and with small amounts of funding – mainly from the M.E. charity sector. This must be scaled up if real progress is to be made.
Professor Chris Ponting
Professor Ponting picked up this point and highlighted the disparity in research funding allocated to M.E. when compared to many other medical conditions.
He presented a compelling case for sustained, ring-fenced investment, suggesting that a UK institute for M.E. research could be a world-leader.
“Funders must recognise that they need to incentivise early-stage career researchers to enter this field,” he said.
“They frequently cite the need for a robust evidence base to support research funding applications – but without funding it is not possible to achieve this. We must break this vicious cycle.”
Highlighting the huge gains from patients, researchers and charities working together – an example being the recent M.E./CFS Biomedical Partnership application he is leading – Professor Ponting stressed the need for further and longer-term funding to sustain this momentum.
Dr Eliana Lacerda
Giving a brief overview of the work of the CureME Biobank, and some examples of research where these blood samples are now being used, Dr Lacerda agreed that sustainability and infrastructure are among the significant challenges facing M.E. researchers.
MPs Reaction
MPs were taken aback to learn that the basic running costs for the Biobank have all been provided by the M.E. charity sector, that the bulk of the Biobank’s external research funding has come from the National Institutes of Health in the United States; and that Professor Newton has ceased M.E. research altogether – despite having access to a large patient cohort – because funding is so difficult to secure.
MPs asked what practical steps they could take to support M.E. research. Insightful follow-up questions focused on research into similar conditions, the search for biomarkers and the stigma still attached to M.E., with Professor Newton commenting that she had been “appalled” by attitudes she had seen from some fellow clinicians.
The real possibility of a rise in post-infectious M.E. following the Coronavirus – Coronavirus was being debated in the Chamber at same time as this meeting – was also highlighted by Professor Ponting, serving to reiterate the seriousness of his intent, and the urgent need for proper research investment.
A briefing based on presentations from the meeting will be circulated to all APPG members. A list of MPs who attended is below:
- Angus MacNeil MP (representative)
- Carol Monaghan MP
- Caroline Nokes MP
- Edward Davey MP (representative)
- Ellie Reeves MP (representative)
- Fleur Anderson MP
- Jacob Young MP
- James Davies MP
- Jason McCartney MP
- Jim Shannon MP
- Kate Green MP (representative)
- Laurence Robertson MP
- Liz Twist MP (representative)
- Mark Tami MP
- Michael Tomlinson MP (representative)
- Neale Hanvey MP
- Sally-Ann Hart MP
- Sharon Hodgson MP (representative)
- Siobhan Baillie MP
- Scott Mann MP
The next meeting of the APPG will take place on Wednesday, 29th April 2020 – please encourage your MP to attend.
Invite Your MP
We would like you to contact your MP, especially if they are known to be already interested in M.E. and invite them to be a part of the APPG on M.E.
The more representatives we can have at these meetings the greater the potential influence.
For further information on the time and location of the meeting, your MP can contact Carol Monaghan via House of Commons email/telephone or consult the All-Party Notices.
Sample Email
Dear XXXX,
The All-Party Parliamentary Group on M.E.
I live in [local town/city etc. in constituency] and [insert brief personal background].
M.E. is not a new disease. The medical profession has known about it for decades and yet we still don’t have an effective treatment or any real understanding about what might cause or perpetuate the condition.
It has been estimated that M.E. could affect as many as [insert estimate on local prevalence e.g. 2,200 children and adults in Cornwall]. The national prevalence is believed to be as high as 265,000. It is indiscriminate and effects people from all ethnicities and social backgrounds.
We desperately need the help and support of MPs like you if we are going to get the necessary research funding and medical understanding to really make a difference to people’s lives and enable them to return to education and employment.
Carol Monaghan (MP for Glasgow North-West) has now reconvened the APPG on M.E. and the last meeting saw presentations from several eminent scientists in the field.
I would be very grateful if you could attend the next meeting which takes place on Wednesday, 29th April. Please contact Ms. Monaghan's office for more information.
Yours sincerely,
[Full Name and Address]
END
Note: Use 0.4% of the population as the estimate of M.E. prevalence. The official range of prevalence is 0.2-0.4%. You can search on Google for population estimates in your area. These will likely be based on reports from the Office of National Statistics (ONS) and the most recent (or estimated) UK census.
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