Minutes of the meeting held at House of Lords, Tuesday 11th July 2017, 2pm

Present: Countess of Mar (Chairman); Janice and Bill Kent (reMEmber); Dr Charles Shepherd (ME Association); Clare Ogden (AFME); Jane Colby (TYMES); Tony Crouch (representing the 25% Group and TYMES Trust); Christine Harrison (BRAME); and Sue Waddle (ME Research UK).
In Attendance: Professor Diane O’Leary, Kennedy Institute of Ethics, Georgetown University, Washington DC.

  1. Apologies had been received from Hannah Clifton, Gareth Tuckwell, Paul Worthley and Cath Ross.
  2. Guest Speaker, Professor Diane O’Leary, Kennedy Institute of Ethics, Georgetown University, Washington DC.
    1. Prof O’Leary said that, in the light of NICE’s decision not to review its Guidance on ME/CFS, she and the Chairman had drawn up a paper on the ethical implications of that decision. That paper “An Ethical Path Forward…..” had been tabled. She went on to explain the different parts of the paper.
    2. By way of introduction she explained she worked in medical ethics and medically unexplained conditions. She had been disabled for 17 years but eventually found a cure. She said that until now no-one in ethics had looked into medically unexplained symptoms. 52% of all patients have such conditions but the standard approach is psychiatric treatment. Why?
    3. Prof O’Leary referred to what she called “The Middle Way”. She explained that in 2007 a doctor would say to a patient “CBT or GET are best for you” because that was the consensus. In 2017 that is no longer the position – therefore the Guideline as it stands is unethical.
    4. Prof O’Leary went on to say that ME advocacy was the most focussed advocacy she knew of, and she noted that Forward-ME was at the forefront of that advocacy. She asserted that people with ME have a right to medical care. There was debate about whether ME was a biological illness. It would be difficult for advocacy to win that battle because their opponents would argue that hasn’t been proved. But that did not matter; the ethical principle is that if it is possible the patient has a biomedical illness then she or he is entitled to biomedical treatment.  “An Ethical Path Forward….” starts by asking whether significant evidence has come to light since 2007 (when the NICE Guideline was published) to warrant revision of the Guideline. Prof O’Leary argues that it has. In 2015, following extensive review of biological and psychiatric research, the US Institute of Medicine concluded that the long standing consensus about the etiology and management of ME/CFS had been mistaken. That opinion had now been embraced by a whole range of US governmental medical authorities. Whether NICE agree or not, she said, they must revise the Guideline to show that the debate is changingIt violates two central ethical precepts – first of all both NICE and the NHS have an obligation to protect every patient’s right to health. They should acknowledge it is possible that every ME/CFS sufferer in the UK has a biological condition that requires biomedical care, and to deny them that is unethical. The NICE Guideline must be changed, she claimed, to ensure ME patients are not denied biomedical care.
    5. The second ethical precept, Prof O’Leary said, is the principle of informed consent. She maintains this means it is unethical to withhold information about the nature of ME and the need for medical care which is currently being debated by experts worldwide. In this context she asserted that “informed patients do better” and that “no decision about me without me” is a great principle.
  3. Questions
    1. Sue Waddle and Christine Harrison asked how we could ensure NICE know what we want. Prof O’Leary said we should write to them showing we know the ethical requirements and quoting the principle of informed consent. The Chairman explained that there was provision to challenge NICE’s decision and we had until 24 July to do this. She would work with Prof O’Leary to construct our challenge. Members could let her have their ideas to feed into it.
    2. Referring to “An ethical path forward….” Tony Crouch asked what was meant by “healthcare” in that document. Prof O’Leary explained it meant biological medical care. Janice Kent said there could be a problem with GPs who are responsible for medical care in the first place. Prof O’Leary said that NICE’s revised guidance should be neutral as to whether CBT/GET or the biomedical approach is better for patients. If that message gets through to GPs it will work in time, even if it takes a little while. She added that medical authorities and doctors do not understand the ethical position and that is what has to change.
    3. Dr Charles Shepherd said he was very enthusiastic about this approach, but what would happen if it was nevertheless rejected by NICE? Prof O’Leary suggested bringing the ethical argument to the attention of the media.
    4. Christine Harrison asked whether we could ask NICE for reasons if they reject our challenge anyway. Prof O’Leary and the Chairman confirmed we could. Prof O’Leary also outlined the likely position if a case were brought to court. Tony Crouch pointed out that where children were concerned very few cases came to court. Social workers make a child protection plan, and only if parents don’t agree with it will it come to court.
    5.  The Chairman thanked Prof O’Leary for an excellent presentation and confirmed she would work with the Professor on the challenge. We should send her any observations we would like included.
  4. Minutes of last meeting (22 June 2017)
    The minutes were agreed as a correct record.
  5. Matters arising
    1. GP Frontline (item 3.11 of last meeting). The Chairman said she had been sent a few copies which she had distributed to members. Dr Shepherd had submitted an article about ME for that magazine. He outlined the points covered in the article, including those submitted by other members, which were discussed.
    2. Isabelle Trowler (item 6.1 of last meeting). The Chairman said she had written to Ms Trowler and had been given contact addresses for the Principal Social Workers’ conference. She asked who might be available on 12th September to attend the meeting of Principal Social Workers in Birmingham. She gave details. Dr Charles Shepherd said he could probably go. The Chairman said she would inform the organisers.
    3. RCGP conference in Glasgow next year (item 3.11 of last meeting). Members discussed the possibility of a stall or workshop. Charles Shepherd said he hoped to attend and had asked Dr Nigel Speight who said he would be delighted to attend.
    4. Returning to the subject of Social Workers Jane Colby raised the question of false allegations. The Chairman agreed this should be taken up. She added that Ms Trowler had also given her the names of contacts at Public Health England who she could write to about CAMHS. This she had done, but had had no response.
    5. Health Select Committee (item 6.3 of last meeting). The Chairman said she had written to the proposer of this inquiry explaining that the committee was likely to be very busy dealing with numerous problems in the NHS currently and that it was unlikely that the Committee would be able to find time. Members agreed.
  6. APPG
    1. Clare Ogden explained it had been very hard to get MPS to commit themselves to an APPG for ME. There had been little contact from those to whom she had written. Sir Peter Bottomley (the last Chairman) had said “no”. AfME’s time could have been better spent. Sue Waddle said she thought the APPG was dead, but suggested that if one or two MPs were still interested we could invite them to meetings of Forward-ME. This was agreed. The Chairman added that there was a big disability group within Parliament; we could link with them. Charles Shepherd asked whether charity reps could attend their meetings. The Chairman said she would ask. It was agreed the public should be informed about the decision on the APPG.
    2. Social Care Enquiry. The Chairman asked for it to be in the name of AfME, not the APPG for ME. Clare agreed.
  7. Research
    1. The Chairman reported she had visited the biobank and had been impressed. Dr Charles Shepherd said he had some good photos which he would circulate to members.
    2. Sue Waddle showed a sheet of projects (appended) funded by ME Research UK which she passed to the minutes secretary (Bill Kent). She briefly described some of them.
    3. The Chairman referred to the post-exertional malaise study which had shown a big difference between people with ME and the controls. Prof O’Leary commented on this study too.
  8. Any other business
    1. Call for a review of NHS services for ME/CFS. Bill Kent referred to attempts reMEmber had made to get an academic institution to conduct such a review. These had been unsuccessful not least because of the likely cost. What he now proposed was a suitable Parliamentary Question (PQ) with the aim of getting the Government to admit that a review was needed. He distributed a paper he had sent the Chairman setting out why a review was sought and what it should examine. The Chairman said she would table a suitable question.
    2. Christine Harrison said BRAME had conducted a local study of this kind and had passed on the results. Bill Kent said he was grateful for this and for other studies that had been done by the MEA and AfME for example. They could be taken into account when a national review was being considered. But previous studies had mostly looked at what patients had reported; the study he envisaged would look at what each centre was providing (it varies- none of them provide anything for children for example) and their outcomes.
    3. Jane Colby queried whether these centres would be honest in what they reported. Janice Kent explained that they should all have data/statistics which should be reported to the independent National Outcomes Database (NOD). That’s what we wanted, not the opinions of the people at the centres. And other important information such as what it was costing to run these centres, did they represent value for money, and why are there hardly any doctors attached to these services?
    4. There was further discussion of the proposal. The Chairman confirmed she would put a suitable PQ. (Responses appended)
    5. Clare Ogden passed to Bill Kent the Executive Summary of the report AfME are assembling about their Freedom of Information enquiry to CCGs which indicated considerable deficiency in the CCG’s knowledge of ME services throughout the UK.
  9. Date of next meetings
    1. 17th October 2017. Speaker from Royal College of Paediatricians.
    2. 31st October 2017. Chief Executive, Medical Schools (St Georges).

The meeting closed at 3.30 pm.