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APPG on M.E. update: biomedical research meeting

March 17, 2020

The All-Party Parliamentary Group (APPG) on M.E. held its first meeting on Tuesday 3 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.

Please note, this has been the plan up to now, but it may well be subject to change, given the situation with the Coronavirus. We are reviewing information and advice about the virus on a daily basis.

Members attending heard short presentations from Prof Chris Ponting, University of Edinburgh; Prof Julia Newton, Newcastle University; and Dr Eliana Lacerda, CureME Biobank, before taking the opportunity to ask questions.

Picture shows MPs with Clare Ogden, Head of Communication and Engagement, Action for M.E. (fourth from left) next to Prof Ponting, Carol Mongahan MP, Charles Shepherd (ME Association), Dr Lacerda and Prof Newton.

Patients being let down

Prof 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.

Prof 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. He said:

“Funders must recognise that they need to incentivise early-stage career researchers to enter this field. 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.

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 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.

Post-infectious risk

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; MPs that attended or sent a representative were:

  • 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 has been scheduled to take place on Wednesday 29 April 2020, though this may well now be subject to change. Please check back for updates.