Minutes of the Meeting held in Residence 1, House of Lords, Wednesday 8 May 2019, 2.00 pm

Present: Countess of Mar (Chairman); Dr Charles Shepherd (ME Association); Dr Willy Weir; Katherine Ladd (Researcher for Carol Monaghan MP); Bill Kent (reMEmber); Esperanza Moreno (ME Action); Sam Bromiley (AFME); Jonathan Davies & Simon Phillips (ME Research UK).

  1. Introductions and Apologies
    The Chairman introduced Katherine Ladd (Researcher for Carol Monaghan MP). Apologies had been received  from Carol Monaghan MP, Dr Nigel Speight, Janice Kent (reMEmber), Suzie Henson-Amphlett (TYMES),  Tony Crouch (25% Group), Dr Nina Muirhead, Christine Harrison (BRAME), Jane Colby (TYMES), Hannah Clifton (ME Trust) and Gareth Tuckwell (ME Trust).
  2. Minutes of meeting held on 13 March
    The minutes were agreed to be a true record.
  3. Matters Arising
    There were no matters arising.
  4. NICE CGT Call to Tender
    1. Sam Bromiley reported nothing further had been heard from Helen Dawes so far. The Chairman said she thought the 25% Group had sent in an application. Dr Charles Shepherd said that a researcher he knew would be submitting one too. The Chairman said Tony Crouch had fears the severely affected might be overlooked, and Jane Colby of TYMES Trust had said she was prepared to give as much help as possible. She commented that NICE had given us far too little time to respond. She had written telling them so and as a result we had been given an extension.
    2. Dr Charles Shepherd said that he and Dr Willy Weir were on the NICE Guideline Committee; as members they were restricted in what they could say outside the committee. They could comment on which subjects are being discussed by the NICE guideline committee but could not report the proceedings of their meetings. Dr Willy Weir reported that at the last meeting there was an agenda item on “initial treatment” which he took to mean diagnosis; he was therefore worried when the term “psychological interventions” was used. He had raised objections but was ignored; he would bring them up again at the next meeting.
    3. The Chairman said she had concerns that NICE were relying too much on old research; they should be keeping up to date with current research. Charles Shepherd said he imagined that at the next session they would be discussing early management of the illness.
    4. The Chairman said she had now terminated correspondence with Professor Powys. He had taken far too long to respond to her. She added that ME patients do NOT have to undergo psychological therapies. She had been told over and over again that participation in them is purely voluntary. She directed that this should be stressed in the minutes. Willy Weir added that this is covered in the NICE Guideline, and that all the medical profession should read the work of David Tuller.
    5. Dr Willy Weir said he also had concerns because some in the medical profession (notably psychiatrists) were claiming – wrongly –  that bedbound patients have a different illness. The Chairman said this was similar to the treatment of children with ME who were threatened with being taken into care. Willy Weir said he was also concerned because some people were saying that evidence being discussed was anecdotal; he had pointed out that the anaerobic study in the United States, for example, clearly showed the distinction between those with ME and healthy controls.
    6. The Chairman referred to a lot of criticism of press articles about M. Sharpe. Dr Charles Shepherd drew attention to a video made by Oxford Hospitals NHS Trust about graded exercise, claiming it is OK.
  5. RCGP Conference 2019 (Liverpool).
    1. The Chairman announced an offer of £1,500 to help with the cost. Charles Shepherd said this was from a MEA member. It was agreed the Chairman would write to the donor explaining that Dr Shepherd would send her an invoice.
    2. Sam Bromiley said that Nina Muirhead had written in with some very good suggestions for appropriate literature. The Chairman asked whether it would be better this year to have one big poster for Forward-ME rather than separate posters for the different charities. This was agreed. Dr Charles Shepherd said that we had secured a corner stand this year – that would be better than last year when we had been “boxed in”. There would also be a six-foot banner and a small table for various leaflets.
    3. Dr  Charles Shepherd asked Sam Bromiley if he would be the co-ordinator. Sam replied that it would be he and Clare Ogden. He could also co-ordinate volunteers –would members please inform him of volunteers who could be there. He could be there the night before. Charles Shepherd added that preferably there should be two people at the stand all the time, but not more than two were needed. Esperanza Moreno said there were volunteers in Liverpool who could be called upon.
    4. Jonathan Davies asked how many people would be needed over the period of the conference. Charles Shepherd repeated that two people would be needed at all times. They could be drawn from several members. They had been chosen from a fairly flexible rota last year and that had worked well. He pointed out that Conference would probably need the names of volunteers. Sam Bromiley said he would check on that  – also whether there would be any limit on the number of volunteers, and whether name badges would be needed.
    5. Dr Willy Weir asked if copies of the video “Unrest” would be available. Esperanza Moreno said she would attend to that.
  6. Research
    1. Simon Phillips distributed a paper he had written summarising some research funded by ME Research UK. These included “Visual aspects of reading performance in ME” at the University of Leicester which showed that a number of people with ME/CFS had slower reading speeds than healthy controls. He also reported on a study at Newcastle University examining the particular problems of people who have severe ME/CFS, a “DNA pooling” study in Australia and the role of auto-antibodies in ME/CFS which involved work in Berlin and also Prof Mercedes Rincon at the of University of Vermont.
    2. Jonathan Davies added that Prof Rincon was using samples from the ME Biobank.
    3. Simon Phillips referred to work by Dr Jarred Younger, University of Alabama, looking at the blood/brain barrier and the possible effect of immune system cells on the brain in ME patients. MERUK had put some funding into that too. There had been a lot of publicity around Prof Ron Davies of Stanford University who had conducted a small study (20 ME patients and 20 healthy controls) in which he claimed 100% success in identifying biomarkers in the cells of those with ME/CFS, although clearly there is a lot more work to be done in that area. Charles Shepherd added that clearly this study needs to be replicated in larger numbers by another group. He also referred to another study from the ME Biobank that had found a possible biomarker for severe ME.
    4. Simon Phillips wondered whether MERUK and the biobank might work together on certain research. Jonathan Davies said that MERUK hoped to play a more pro-active role in future – identifying and promoting areas where they felt warranted research in addition to reactively assessing and funding applications received.
    5. Sam Bromiley said CMRC had confirmed their conference would be held in March 2020. 
  7. DWP  
    1. Dr Willy Weir said he had attended a training session with Capita and IAS  which he felt had gone quite well. He had been able to explain to them about anaerobic thresholds and other recent findings. He got the impression there were a lot of people there who had no idea this evidence was in place. The Chairman said she had received good feedback about it.
    2. The Chairman said she had received a report from Christine Harrison who was unable to be present. Christine had been unable to attend the IAS and Capita PIP Stakeholder meetings in March and April but hoped to be at the  DWP PIP stakeholder meeting the following week. The training session on ME for IAS and Capita which she had been promoting for several years had at last taken place on 14 March. Both she and Dr Willy Weir were present.  There was some good constructive dialogue. The session lasted two and a half hours and was recorded for future use.
    3. Christine had reported that she had been able to convey the reality of ME, the reality of living with ME its impact on daily life and mobility in respect of PIP and also the impact and life changing effect on the sufferer, carers and the whole family. She had also emphasised the particular problems of the severely affected, referring to the CMO Report of 2001 (poor prognosis for those who have been severely affected for more than five years). Along with the reports which she and Tanya had provided she hoped this would help towards achieving sensitive understanding, accurate assessment, correct award first time and appropriate review time.
    4. Christine would like feedback about good or bad experiences with assessors so that she can report back to IAS and Capita as to whether the work she has done is proving successful or not.
    5.  The Chairman added that Tony Crouch had said how we must emphasis the bad treatment of children and young people, and that this must be taken into account in any revision of services. Nina Muirhead had sent a lot of relevant information by e-mail. She also said she had received details of a claimant who had been badly treated; she had sent them on to the relevant Minister.
    6. Sam Bromiley said AFME had been contacted by a number of people who had concerns about the Work Capability Assessment. He would be attending a PIP forum in June. The Minister had said he wanted to engage with charities.
  8. Any other business
    1. Dr Willy Weir said that James Miller-Craig, the “ME-friendly” solicitor had retired; he hoped his successor, Richard Brooks, would be equally good.
    2. Several members spoke about ME Awareness Week that was coming up.
    3. Dr Charles Shepherd said that he had been contacted by ITV Wales who wanted to do a programme about lack of ME provision there. The Chairman said perhaps Carol Momaghen could contact some Welsh MPs on that subject. Sam Bromiley said AFME had been working with WAMES. This had been going on for about three years but nothing had changed yet.
    4. Sam Bromiley asked about the debate in the chamber of the House of Commons last January. Had anything more come out of it? Katherine Ladd said Carol Monaghan would like to take things forward but so far nothing had happened.
    5. Suggestions for speakers. Sam Bromiley suggested the new Minister for the Disabled, Justin Tomlinson. The Chairman said she would invite him. Jonathan Davies asked about Dr Gargan from ATOS/Capita. The Chairman said he had already met us twice and she thought it was too early for another meeting yet.
    6. Bill Kent reminded members about reMEmber’s ME Awareness Conference on 11th May. Charles Shepherd and Nina Muirhead would be the key speakers. The Chairman said she hoped to arrange another meeting at the end of June/beginning of July.

 There being no further business the meeting ended at 3.00 pm