Top 10 takeaways from Forward-ME Group Meeting on 10th July 2020

Countess of Mar, Chair of Forward-ME Group
Margaret, Countess of Mar – ME Research UK’s Patron & Chairman of Forward-ME Group

For ease, we provide particular points of interest from the latest Group Minutes. These points are not summaries of the entire area under discussion and ought not to be viewed as such. The exclusion of points raised or details discussions arising does not imply denigration of the topic but rather the pressures to condense a most informative and full meeting into a number of points. The full Minutes are available here.

  • DeCodeME funding of £3.2 million from the MRC was announced on 23 June 2020. This was the culmination of more than 8 years of hard work and involved pulling together the Biomed Partnership between the University of Edinburgh led by Chris Ponting and the London School of Hygiene and Tropical Medicine led by Luis Nacal and Elyana Lacerda and, most importantly, people from the ME community.
  • The creation of a James Lind Alliance Priority Setting Partnership (PSP) funded by the NIHR. It had been offered, through Professor Chris Whitty, some 2 ½ years ago, but it was felt that acceptance at that time might prejudice funding for the genome study. It was an approach used through the James Lind Alliance who have a tried and tested methodology for working with people with an illness, carers and clinicians to develop the top ten research priorities that can then be used strategically to secure funding. More than 100 PSP had taken place over a range of different illnesses, some with greater success than others. For example, the multiple sclerosis PSP had led to multi-million funding.
  • Nina Muirhead, with the help of others, developed a fact-based learning module which was put online on 11 May for ME Awareness Week. In 2 months there had already been more that 1,000 downloads. 97% doing the online module would recommend it. Before doing the module, healthcare professionals agreed that biomedical research was important in 87% of cases. When they finished the module, that was true in 98% of cases. 98% agreed that more formal education on ME/CFS was required. The results also showed that many healthcare professionals did not understand what ME was really like.
  • Charles Shepherd (ME Association) reported that work on the ME/CFS NICE guideline was suspended on 6 April 2020 because of COVID-19. The full committee had not met since. Both the Chair and Vice-Chair of the committee were keen to get moving and the next full committee meeting would be on Monday 13 July. There would then be a series of weekly meetings from then into August to try to get back on track. It was very unlikely that the target for publication in December 2020 would be met because of the pandemic. The current aim is to publish in the Spring of 2021.
  • Carl Monaghan MP (Vice Chair or Forward-ME and Chair of All Party Parliamentary Group on ME) reported that the APPG had been set up because there were many MPs who had contacted her asking for an APPG. The first meeting was in January 2020.  There were about 100 MPs who had expressed an interest which was incredible. They had a clear programme of inquiry. The first one in March 2020 was with Professor Chris Ponting, Dr Eliana Lacerda and Professor Julia Newton. The discussion was on biomedical research. The meeting on 16 June focussed on the issues with children and families. Dr Nigel Speight, Tony Crouch and the parents of a child with ME. She was finalising letters to be sent to the Chief Social Worker for Children and Families and to different Health Trusts raising issues around families being able to have an advocate and other matters that were raised at that meeting.
  • Dr Louise Crozier (ME Research UK’s Science and Engagement Director) gave a brief review of the projects that ME Research UK had funded and gave an update on applications in progress. Two projects have recently been funded to the extent of £100,000 and 9 applications received that are looking for grant or PhD funding. The total requested is £1.1 million, but not all the applications will be successful.
  • Due to gap in advice for those with post COVID-19 health issues mention made of social media pages specifically for medical professionals and signposting issues around GET.
  • The Chairman expressed her sadness that Alan Rengger, Forward-ME’s website manager, had died.
  • Priority Setting Partnership – now  looking at applications for 8 positions on the Steering Group from a wide range of people with or associated with ME. They had to allocate three people to each category – for example 3 clinicians: 3 patients etc. When the membership of the Steering Committee is settled, they can start work on public consultations.
  • Chairman to contact Sean O’Neill,  Chief Reporter at The Times, to ask him to address the Group on the media
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