Minutes of the meeting held in Residence 1
House of Lords
Wednesday 7 February 2018 starting 2pm
Countess of Mar (Chairman), Dr Charles Shepherd (ME Association), Dr William Weir, Bill Kent (reMEmber), Tony Crouch (25% Group and Tymes Trust), Sue Waddle (MERUK), John Davies (MERUK), Christine Harrison (BRAME).
Apologies had been received from Janice Kent (reMEmber), Cath Ross (25% Group), Tanya Harrison (BRAME), Jane Colby (TYMES), Dr Paul Worthley (ME Trust), Hannah Clifton (ME Trust), Gareth Tuckwell (ME Trust) and Clare Ogden (AFME). Sue Waddle introduced Jonathan Davies who had recently joined MERUK as a trustee.
2. Minutes of meetings held on 5 December 2017 and 10 January 2018
The minutes of both meetings were agreed to be correct.
3. Matters arising
3.1 Green Paper on Mental Health Services for children (item 2 of 10th January meeting). The Chairman said she had just received a paper on the subject from Jane Colby (Action for ME had also had input) which she read out to the meeting.
3.2 Main points from Jane’s paper which had been based on one written by Action for ME:
– ME is not a mental health condition, but children are often referred inappropriately to CAMHS. Having to attend school can be a key cause of relapse in children with ME which has a devastating effect on the children and the families.
– ME is the biggest cause of long term sick absence from school. A significant number of children and young people experience co-morbid anxiety and distress from coping with the stigma of ME and educational pressures.
The Chairman asked members if they were content for Jane to put that forward on behalf of ME. There were no dissenters, but Tony Crouch said he had not had time to study the paper. He would do so and let Jane know (see attached the Chairman’s submission of 26 February 2018 on behalf of Forward-ME).
3.3 Chairman’s PQ re children with ME. Tony said the answer was a bit worrying (no special training for the Mental Health Leads in schools). Others agreed.
3.4 The Chairman said she had been in touch with the Children’s Commissioner. Should she ask her to meet us? Members agreed unanimously.
4. Workshop on review of NICE Guideline 16 January 2018
4.1 The Chairman asked how the “round table” discussions had gone. There was general agreement that they had been successful. The Chairman said she had pointed out that the Americans had now removed CBT and GET from their guidance. It was unfortunate that Anglia ME Action had put on their website on 22 January 2018 that they doubted CBT and Graded Exercise would be taken out of the new guideline.
4.2 Christine Harrison pointed out that what some services are calling “GET”, when described, were closer to pacing. Charles Shepherd agreed that a number of the NHS services were providing pacing but were calling it GET to indicate they were complying with the current NICE Guideline. Sue Waddle pointed out that doctors received an enormous amount of information about ME. It was probable that they spotted the words “Graded Exercise” and on that basis were telling patients to take vigorous exercise.
4.3 The Chairman said Jane Colby had sent a lot of comment on the workshop which she read out. She would arrange for members to receive copies (see attached).
4.4 What the illness should be called. There had been considerable discussion about this at the workshop. Members discussed this at length. They highlighted the confusion surrounding the different names. The Chairman said the general consensus seemed to be to get rid of the term “CFS”. Dr Charles Shepherd said we would need to feed these observations back to the NICE Review committee. What to call the illness and diagnostic criteria would take up a lot of their time.
4.5 Dr Weir said that the three most convincing papers on the biomedical nature of the condition, which psychiatrists cannot refute, including that on anaerobic thresholds, all use the term “CFS”. This could cause difficulty for the Review team. The Chairman commented that the new guideline should explain in detail why the term “ME” is to be preferred. Dr Charles Shepherd referred to the IOM report which used the term SEID. Many people did not like that name but liked the clinical definition in the IOM report.
4.6 Referring to the scope of the review, Christine Harrison said the wording and phrasing of the scope was absolutely vital to ensure that all relevant research and information was included and reviewed – for example, that all research papers relating to exercise were part of the review – ME and exercise and CFS and exercise, not just ME or CFS and GET. Patient evidence also needed to be given a much higher priority this time.
4.7 Dr Weir said that the “D” IN SEID stood for “disorder” – an unspecific term – whereas research had shown that in ME there is inflammation in the central nervous system, which means that “encephalomyelitis” is accurate. [ME Association Note: ‘SEID’ stands for Systemic Exertion Intolerance Disease.]
4.8 Dr Charles Shepherd and Sue Waddle asked whether, pending the completion of the Review, NICE might issue a statement about CBT and GET being questionable. The Chairman said she would write to Prof Mark Baker about this.
4.9 Tony Crouch read an extract from Professor Mark Baker’s reply to correspondence from Invest in ME Research. This reiterated his position that the existing guideline would not be withdrawn pending the issue of the new one but that he had been struck by the reports at the stakeholder workshop of misuse of the current guidance. He was considering any action that NICE might take. This reflected the discussion in the small group of which Tony was a member at the workshop where it was strongly suggested that if the guideline was not to be withdrawn a covering message should be placed on it in order to prevent further harm.
4.10 The Chairman announced Carol Monaghan MP (Scot Nat, Glasgow North-West) had managed to secure a 30-minute debate on PACE in Westminster Hall on 20th February. It was probable a junior health minister would also be present. She had given Ms Monaghan a briefing. Dr Shepherd and Dr Weir would be going to meet her at the end of this meeting.
5. Royal College of General Practitioners Conference, Glasgow, October.
5.1 The Chairman said Clare Ogden had informed her she was still waiting to hear from the organisers about Forward-ME getting a stand at the charity rate. Clare would forward details as soon as they were to hand. The Chairman said Forward-ME hoped to have a board for posters etc. Charles said that unfortunately the stands might be quite small. Tony Crouch said Helen Brownlie from the 25% Group lives in Glasgow. She and some carers of severely affected people who had previously presented to the Scottish Parliament would be in a good position to assist.
6. Children with ME
6.1 The Chairman announced that Action for ME were launching a project in Scotland looking into the problems of children with ME there. They would be contacting children, families and schools. We had already discussed the Green Paper on children and mental health at item 3 above.
7.1 Christine Harrison reported on a meeting with IAS (Atos) in January, which was a constructive day. She continues to raise concerns and issues with Capita, who would be attending the next Forward-ME meeting.
8. Any other business
8.1 Proposed letter to the Times. Dr Weir handed out a revised copy. Charles Shepherd commented that the Times was unlikely to accept more than 200 words. Dr Weir said the purpose was twofold; first to increase public knowledge and secondly to provoke response. He referred again to the incontrovertibility of muscle biopsies. The Chairman said Jane Colby had offered to precis the letter; could she send it to her? Dr Weir agreed and said he would e-mail a revised version to members. Members discussed the content at some length (The letter was submitted on 18 February but not published – see attached).
8.2 Sue Waddle returned to the subject of the PACE trial. She suggested that the amount of money wasted on it should be a subject for the Parliamentary Accounts Committee. The Chairman commented that she had already approached the PAC and she had received a sympathetic response, but no action was to be taken.
8.3 Christine Harrison spoke about SNOMED (the international successor to Read Codes) and ICD11. She explained again how she had fought for many years on these issues, and to get formally noted on everyone’s medical records the medical conditions diagnosed, using the appropriate Read or SNOMED code, along with the severity level or stage of their illness. This would provide a means of obtaining epidemiological data and health and care needs of patient groups, including those with neurological ME, at both local and national levels.
8.4 Dr Weir referred to an interesting paper from Nigeria which shows a considerable incidence of an ME-like illness there.
9. Date of next meeting
28th February, 2pm. Dr Gargan from Capita will attend. The meeting after that will be with the Children’s Commissioner. Meeting closed 3.15 pm.
Attachment: Letter to The Times.
NICE is in the process of replacing their guideline for ME/CFS, but this will take time. Patients with ME/CFS in this country continue to receive damaging treatment. Despite incontrovertible evidence of disabling metabolic abnormalities in their muscles, they are advised to “exercise back to fitness”.
They are not simply “deconditioned” as claimed by many psychiatrists. Forced exercise above very low levels characteristically incapacitates most patients. The “exercise will make you better doctrine” applied to ME/CFS is thus profoundly incorrect and has no scientific evidence base.
The human cost is enormous, with many sufferers from ME/CFS rendered much worse by seriously inappropriate medical management. Even worse, such management is inflicted compulsorily on some patients, both adults and children, with their informed consent being bypassed via egregiously erroneous use of mental health and child protection legislation.
Countess of Mar, Forward-ME
Dr William Weir, Infectious Disease Consultant
Dr Nigel Speight, Paediatrician
Dr Charles Shepherd, ME Association
Dr Vance Spence, ME Research UK
Dr Gareth Tuckwell, ME Trust
Dr Paul Worthley, ME Trust
Jane Colby, TYMES Trust
Helen Brownlie, 25% ME Group
Tanya and Christine Harrison, BRAME
William and Janice Kent, ReMEmber
Hannah Clifton, ME Trust
Clare Ogden, Action for ME