Forward-ME Group Meeting Minutes – 9th September 2020

Full Minutes from the Forward-ME Group’s virtual meeting on 9th September are now available.

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 minimise the importance of the topic but rather arises due to the pressures to condense a most informative and full meeting into a number of points.

  • The invited speaker was Sean O’Neill of ‘The Times’ newspaper who, when asked how ME could best be presented to the media he felt that DecodeME was a massive breakthrough. As that story unfolded there would be a series of milestone hits which would need to be focussed on with a media strategy with targets such as the BBC, Sky, ITV as well as the Press. Tell the same story, but tell it in a different place.
  • Our Vice Chair, Sue Waddle raised concerns with Sean that the Science Media Centre appeared to pre-empt stories that were about to be published. She wanted to know how much influence the SMC had on what was published. Sean indicated that he had never had any dealings with SMC. He recommended ignoring them rather than entering combat. He felt that SMC influence was diminishing. It was better to concentrate on credible media outlets, making the message as strong and as human as possible.
  • Nina Muirhead told the Group that the CPD online education module had been going very well. There had also been an invitation from the BMJ to pitch an education piece on ME, and an invitation to write a 6-week master class on ME. There was also some potential interest for an opinion piece on ‘Is ME the same as Long COVID’ for the BMJ.
  • On NICE guidline review, the Group were informed that a draft with conclusions and recommendations had been produced and consensually agreed. The draft would go out to Stakeholder consultation on 10 November and there would be a 6-week consultation period ending on 22 December.
  • Due to COVID-19 Maximus were doing 10,000 telephone interviews per week in respect of DWP applications and assessments. It was clear that for the near future there would be no assessment centres open. Every DWP assessment would be by telephone, though they were looking at Zoom. There was no satisfactory answer from the DWP as to why PIP assessments could not be completed online.
  • On DecodeME – over 20,000 people had already signed up to express an interest to take part in the research. Patient recruitment proper would start in March 2021. Not all those who signed up would be eligible to take part, so many more signatures were wanted.
  • The James Lind Alliance Steering Group applicants have been assessed and those who were considered top candidates for the steering group, had now been accepted. There would be a meeting at the end of September to introduce them to the concept of the PSP. Te successful candidates are parents, carers, and people with ME and clinicians including some very well-known names.
  • ME Research UK’s Science & Engagement Director, Dr Louise Crozier reported on ME Research UK projects. The most recently funded project was awarded to Prof. Jo Nijs (Vrije Univeristeit Brussel) and Prof. Lode Godderis (University of Leuvenwith) and followed upon a previous study of epigenetics. ME Research UK is presently considering 8 grant applications.
  • The Group issued a Joint Statement on Spinal Surgery for Patients with ME.
  • Email from the DWP Personal Independence Payment (PIP) Team was disseminated and concerned the publication of an updated version of the PIP Assessment Guide (PIPAG) to reflect the implementation of the Supreme Court judgment in the case of Secretary of State for Work and Pensions v. MM into the Personal Independence Payment (PIP) assessment process.

The next meeting will be in late November 2020.