Minutes of the Meeting held in Residence 1, House of Lords, Tuesday 1 May 2018, 2.00 pm

Present: Countess of Mar (Chairman); Carol Monaghan MP; Amy Brett (PA to Ms Monaghan); Bill Kent (reMEmber);  Jane Colby & Anita Williams (TYMES Trust); Tony Crouch (25% Group); Christine Harrison (Brame); Clare Ogden (AFME); Dr Charles Shepherd (ME Association); Dr Nina Muirhead; Sue Waddle (ME Research UK); and Alexandra Heumber (Head of International Advocacy/ AFME).

  1.  Apologies had been received from Dr Paul Worthley, Gareth Tuckwell and Hannah Clifton (all of the ME Trust), Dr Nigel Speight, Janice Kent (reMEmber) and Sarah Reed (ME Action).
  2. Alexandra Heumber.
    1. The Chairman introduced Alexandra who explained that she works in Geneva and has close contact with the World Health Organisation (WHO). She said she had no prior knowledge of ME but she has had contact with AFME (Sonya Chowdhury in particular) and she recognises that something needs to be done about ME. She is very committed to this cause and wants to make a difference internationally.
    2. Alexandra went on to explain that currently she is working on a 3 to 4-year international project initiated and financed by AFME. The aim is to build a global framework of member states (with WHO). The member states would have to comply with the requirements of WHO. For example, to have ME recognised internationally as a physical disease. They also want more research into ME, and an international alliance to press for these things. There are already delegates from several countries including the UK, Australia and Japan.
    3. The group already has two main activities; on 12 May there will be an ME Awareness event in Geneva. The second is a letter calling on WHO to take action. (The Chairman referred to the letter that she had distributed to members). These activities are to raise awareness and, also, aim to achieve policy changes. There have already been some useful contacts. Alexandra gave as an example a good meeting she had had with the Japanese Health Attaché.
  3. Questions and discussion
    1. The Chairman asked if Forward-ME could invite a member of the Alliance to come and speak to us. Alexandra Heumber confirmed that would be acceptable. Several members proposed Forward-ME should be the UK member of the alliance rather than just AFME. This was agreed.
    2. The Chairman agreed that we should discuss item 7 on the agenda (BSS, MUS and IAPT) at this point as it had international implications, and Alex would be unable to stay for the full meeting. The Chairman went on to say that in her view the NHS had acted prematurely by introducing IAPT for people with ME. Alex explained she was not familiar with the technicalities and would like to hear from more knowledgeable members of this meeting.
    3. Clare Ogden referred to the e-mail she had sent out on this subject. She repeated her concerns about plans to reclassify ME/CFS as Medically Unexplained Symptoms (MUS). Last year the National Audit Office (NAO) had spent a lot of money conducting an investigation into Improving Access to Psychological Therapies (IAPT) – although that investigation had not been properly audited. The Chairman commented that she could ask a Parliamentary Question about that investigation. Clare went on to explain that figures for recovery rates under IAPT were disputed. Some claimed they were as low as 10%, others as high as 50% . Dr Charles Shepherd commented that he knows someone very high up in the psychiatry specialism who says recovery rates are nowhere near as high as 50%. Clare had figures which showed that out of a million referrals, 85% do not complete the course. She added that there were three questions we needed to ask – 1. What is happening with ME patients under IAPT? 2. What have NAO found; their report is overdue? and 3. How will all this affect the NICE Guideline which is under review?
    4. The Chairman commented that if we at Forward ME can work together with people from other countries and present an agreed narrative we can overcome many of the problems. Unity is strength. She also said she would write to Lord O’Shaughnessy on this matter and ask him to come and speak to us.
    5. There was considerable discussion about claims that ME/CFS is a “mental health condition, and use of the term “functional disorder”. Carol Monaghan MP said she had written to Jeremy Hunt and NICE about this. Dr Charles Shepherd said that unfortunately most neurologists don’t want to deal with the management of ME patients. They don’t believe ME is a neurological disease. They love the term functional disorder and are inclined to refer ME patients to a psychiatrist interested in functional disorders.
    6. Sue Waddle asked Alex what provision there might be in her project for dealing with claims that ME is a mental health condition. Alexandra replied that if WHO were to declare that ME is a physical disease that problem would be overcome. But to achieve that we would need the consensus of the international alliance.
    7. Dr Charles Shepherd referred to ICD11 and asked Alex her advice on what we should be doing about it at Forward-ME and Parliament. Alex said that if we can get all parties – the international alliance, WHO, governments etc – to agree that ME is a physical disease (not mental), ICD will have to follow.
      The Chairman commented that Diane O’Leary had been very useful in alerting us to the work that had been done in the WHO to transfer ME/CFS from a specific disease to musculoskeletal signs and symptoms. Diane had recently written to say the UK Journal of Medical Ethics had accepted her paper on ME and the NICE Guideline and had commented favourably.
      The Chairman also mentioned she had written to the Royal College of Physicians, but they were not interested and suggested that she write to the Royal College of General Practitioners. In fact she had already done so and had received a favourable response.
      At this point Alexandra Heumbert had to leave; the Chairman thanked her for her helpful information and for accepting Forward-ME into the alliance.
      Dr Shepherd read from a letter of reply sent to the Chairman from Dr J Leech (Hon Sec, RCGP) about the proposal to re-classify ME/CFS under the heading of “medically unexplained symptoms” and use of the term “bodily stress syndrome” (BSS). In it he said that GPs should treat patients holistically. The RCGP had recently revised its training curriculum which had been submitted to the General Medical Council for approval. He also said that ICD classification is only one tool that can be used and is not overriding. Clare Ogden commented that they seemed to be saying that they don’t pay much heed to ICD. Other members agreed that most GPs probably knew nothing about ICD, but the Chairman warned that we should be concerned about the replacement of MUS with BSS. She had tabled a PQ on this subject. Carol Monaghan MP offered to look into this too. This was agreed.
  4. Minutes of meetings held on 7 February and 28 March
    The minutes were agreed to be true records.
  5. Matters arising
    1. Science Media Centre (item 3, minutes of 28 March meeting). The Chairman announced she had received no response to her letter to their Chief Executive. She requested the help of members in the form of anything we get to know about the SMC. The SMC had made denigrating comments about ME and the ME charities in the past. It was a rule of the Charity Commission that one charity must not malign another. She would bring such comments to the attention of the Charity Commission.
    2. Dr Charles Shepherd pointed out that there was a slight problem in that the SMC had made very little comment of their own about ME/CFS. What they had done was to show bias in the scientific papers they had chosen to flag up –in other words only papers that emphasised the psychosocial cause of ME and portrayed the ME charities in a poor light. In response to a question by Jane Colby, Charles agreed that they had referred to allegations of harassment of certain doctors.
    3. Carol Monaghan MP announced she would have to leave the meeting soon because of other engagements but before leaving she would outline relevant activity now taking place in the House of Commons. She had had meetings with other MPs (including Nicky Morgan MP and Alex Chalk MP) about ME/CFS. She had been contacted by a Labour MP as well. Thanks to the charities constituents were now getting in touch with their MPs about lack of provision for people with ME. She urged the charities to encourage this. The MPs had drafted an Early Day Motion (EDM) which had been distributed to members of Forward-ME, although it was not yet for publication. She would be grateful to receive any comments; they hoped to table the EDM within the next few days, and she asked members to get their MPs to sign up to it. They were also aiming for a full debate in the chamber of the House of Commons. She had recently discussed these matters with Norman Lamb MP. The Chairman said she would try to arrange for Lord O’Shaughnessy to meet herself and Carol Monaghan.
    4. Clare Ogden said she and Charles Shepherd had been working with ME Action and the ME Trust to produce a Parliamentary Briefing on key issues about ME (just one page to each area). They would send round the brief shortly. The Chairman asked members if they were happy with the wording of Carol Monaghan’s EDM. Members confirmed they were, so the Chairman said she would e-mail Carol accordingly.
  6. Research
    1. ME/CFS Biobank. Dr Charles Shepherd said the ME Association hoped to make an important announcement about the biobank soon.
    2. Clare Ogden made an announcement about this year’s CMRC Conference which would be more open to patients than in the past. Dr Charles Shepherd stressed that CMRC was much more “patient friendly” now. Chris Ponting was a welcome addition; patients would be welcome at the dinner, which had not been the case in the past.
    3. Jane Colby expressed concern about the “Shopping Bag” study. They were trying to establish what strategies patients use when faced with “exertion”. It was not clear how they would define different types of exertion and she was suspicious about any study emanating from Bath. The Chairman noted Jane’s concern.
  7. DWP
    1. Christine Harrison said she had met Capita recently and had seen the most recent draft of the guidance they had discussed at their meeting with us earlier this year. It was a bit better than what we had been shown but still needed a lot of work on it.   It was the best meeting they had had with Capita. Regarding ATOS, who hold constructive, day-long meetings with their stakeholders. They were happy to meet again with Forward-ME if invited.
    2. Sue Waddle said she had heard that all DWP interviews were to be taped, although that was not happening yet. Jane Colby commented that another problem was that many of the centres were difficult to access – several floors up etc. Christine commented that she could not understand why DWP did not make use of GP’s surgeries.
  8. Future meetings
    The Chairman announced that she had arranged a meeting on 10 July with people from the Parliamentary Ombudsman’s office to talk about their work; they get lots of complaints from people with ME.
  9. Appointment of a Vice-Chairman
    The Chairman asked those present if they would consider whether she should invite Carol Monaghan to be Vice-Chairman of Forward-ME. It was unanimously agreed that this would be a good idea.
  10. Any other business
    1. Dr Charles Shepherd suggested we hear from Mrs Nina Muirhead who was a surgeon in dermatology and had an interest in medical education, with a wide range of contacts with people working in that field. Nina said a very good contact would be Clare Owen who meets with all the deans. The Chairman asked Nina if she could invite Clare to a meeting with us in the Autumn. Nina agreed and said she was about to start some investigations of her own into medical schools and ME.
    2. Mrs Muirhead explained she had been completely fit and well until her mid-thirties when, in September 2016, she fell ill with glandular fever followed by severe post-exertional malaise. She had to spend a year in bed and was now in a wheelchair. She had not been taught about ME in her medical training. It was not until this year that she had been well enough to look into published work about ME. Before becoming ill, she had co-authored two medical textbooks, and she lectures at the Royal Society of Medicine. She teaches on post graduate courses at Cardiff Medical School. Her next big project would be to contact all the medical schools and find out what they are doing by way of teaching students about ME. Members discussed this subject in some detail.  
    3. Nina Muirhead added that she knew some people in TV and she would investigate to see whether a programme might be possible. The Chairman thanked her for her very helpful contribution.
    4. Children and the Lightning Process: Bill Kent said that reMEmber had been very concerned that the Lightning Process was being recommended for children with ME. They had been trying to find out from the local NHS what provision they might be making for children with ME. The local CCG had said they would send a written reply which had not yet been received. However, they also mentioned that children with ME could be referred to a local consultant paediatrician. A few days later reMEmber was contacted by a mother who said her daughter had seen that consultant who said she should experience the Lightning Process. reMEmber had reported this to Sir Nicholas Soames MP who said he would support them. The Chairman added that she, too, was concerned that the Lightning Process had appeared on the NHS Choices website; she would be asking a PQ about this.

There being no further business the meeting ended at 3.30 pm