16th March 2021
Virtual meeting held on 16th March 2021
Margaret Mar (MM)
Natalie Hilliard; Baroness Scott; Stephen Holgate; Nina Muirhead; Debbie Burgess; Carol Monaghan
1: Welcome and introductions
MM welcomed all to the meeting.
2: Minutes and actions from the last meeting
Minutes were agreed and thanks given to ME Association for work on the website.
No matters raised from the previous meeting.
3: Introduction of members and Andrew Morris
Members introduced themselves and the organisations they represent.
AM said his daughter has ME and her life has changed as a result. In the last year caring responsibilities have been heightened.
Introduced to Forward ME as he is keen to focus on ME/CFS. He is from a business background and has spoken to various individuals who have given different takes on the role of Forward ME and the challenges that present.
He would run this by his daughter before agreeing to ensure she is happy with this. MM is a tough act to follow and there is a huge amount of knowledge to absorb.
Current roles of AM include mentoring and coaching organisations and those skills would be useful here.
AM would initially form a steering group of 4-6 people to discuss issues of the day and then relayed to the wider group. This would keep the organization moving and members involved.
We would identify a ‘core purpose’. Allocate by agreement ownership of certain issues to lead the way forward. We would lay down a set of objectives to set out what we want to achieve which would be measurable and monitored.
The discussion covered the following pointed:
- Important to connect with the health professionals people with ME can trust.
- Acknowledge the links Forward ME has with politicians and the benefit this organisation can bring.
- Forward ME would best serve community if it would reestablish itself as a lobbying organization.
- We should stay away from areas where charities are strong but focus on collective weakness.
- Will this be a continuation of Forward ME or a new initiative? The core of our values must be the patients.
- An important role of Forward ME is aligning our views and combating psychosocial lobby.
- Important we have a process to dig into priorities.
- We should ensure whoever chairs has credibility and authority. We as a collective should be aligned with that.
- Too many charities in the field already and should not add more into the mix. We should be more aligned to reduce the number of voices.
- Forward ME provides weight and operates at a strategic level. This helps in discussions with Government and health and social care representatives.
- This should be a coordinating function while also recognizing richness in the differences we have.
- MM had won the trust of the organisations when setting up Forward ME. There is a wealth of experience here and AM would need to hear that.
- The importance if better biomedical services for patients for which a service exemplar was being developed.
AM summed up by saying he views this as a chance to get something done and not be a talking shop.
4: NICE Guideline
The group recognised the importance of the Guideline and will await the publication.
SB updated on the work to promote Nina Muirhead’s CPD module. This included recording a short podcast, which had the experience of a person with ME as well. The CMRC Medical Education Group are also looking at a report which has been produced and looks at the gaps which need to be addressed in promoting Medical Education.
Recruitment for DecodeME delayed until September. This is because the ethics submission was delayed to ensure greater PPI, which has already impacted the study in a great way. Delays have also been because of Covid and the need to put suppliers in place.
We are planning a huge splash in May to get as many sign ups who will be first in line to participate. So far over 20,000 but we know not all will be eligible or return spit kits.
Lots being done in the background to get things ready, especially with Solve. Website has been updated to improve branding and accessibility.
PPI Steering Group – CS stepped back and replaced by Emma Northwood. She was Research Officer at MEA and will continue as their representative.
JD said we have celebrated 21st Birthday this year. Over this time we have achieved £2.1 million of research projects.
We have continued to fund projects and are being appropriately strict in ensuring people are robust in their approach.
CH said a new PIP report has been produced which is available today.
SB said that AFME have been working with the DBC to promote a campaign to increase disability benefits and extend the £20 Universal Credit uplift to legacy benefits. They are also working with the Disability Unit in the Cabinet Office to press the Disabilities Minister and DWP for this.
It was agreed that we would look at the NICE Guideline in the next meeting and treat a response as a matter of urgency.