Forward-ME

Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 20 January 2015, 2pm
Present: Countess of Mar (Chairman); Janice Kent (reMEmber); Christine Harrison (Brame); Dr Charles Shepherd (ME Association); Sonya Chowdhury (AFME); Dr Paul Worthley; Sue Waddle (ME Research UK) and Jane Colby & Anita Williams (TYMES Trust)

  1. Apologies were received from Bill Kent, Christine Harrison, Hannah Clifton and Mary-Jane Willows.
  2. Guest Speaker, Dr Alastair Miller, Medical Adviser to AFME and BACME
    2.1  Dr Miller explained he was an infectious diseases physician. He had spent seven years in the Royal Navy, and since then he had practised in Worcestershire and latterly in Liverpool. He had taken a long-term interest in ME/CFS. He had found it affected all ranks in the RN, and he was well aware of the “payback” effect. In Worcestershire they had a county-wide ME/CFS service that extended into Herefordshire. In Liverpool about one-fifth of his work was to do with ME/CFS; their service involved consultants and various therapists. He became medical adviser to AFME about five years ago and was a founder member of BACME. He had probably seen altogether about 3,000 patients with ME/CFS – an average of 100 a year.
    2.2   Dr Miller said he did not think that ME was a “diagnosis of exclusion”. You could make a very positive diagnosis from observing the patient’s condition and history – things like payback (post-exertional malaise), brain fog etc. It was a different fatigue from that experienced with cancer and other chronic conditions, and there was a massive difference between “chronic fatigue” and ME/CFS. Although a lot of research was taking place, there was no clear consensus on the mechanism of the illness – and there are other conditions where this applies –eg chronic tension headaches.
    2.3  Turning to treatment Dr Miller said the PACE trial had given an evidence base to the treatments already being given in the ME/CFS centres (ie CBT and Graded Exercise). BACME was currently drafting a document on the control of symptoms. He was aware of controversy of the around the NICE Guideline but unfortunately there was not another treatment with an evidence base.
    2.4  Dr Charles Shepherd referred to Forward-ME’s meeting with Professor Mark Baker of NICE. We had voiced our concerns and he didn’t want to dismiss any of them. He seemed to agree there should be a revision of the Guideline, but apparently that decision was no longer up to NICE but a matter for NHS England, and there is already a backlog of other guidelines to consider. So the ME/CFS Guideline was now on the “static list” and apparently nothing could be done unless NHS England could be persuaded to change its mind. He would be interested to know the views of Dr Miller and BACME on this.
    2.5  Dr Miller said he accepted the Guideline had its limitations but there was not yet an evidence base for other therapies. What were members hoping for in a revised guideline? Dr Charles Shepherd suggested a less dogmatic, “one size fits all” approach. Sue Waddle said that the current guideline did not draw attention to the devastating effect Graded Exercise could have on patients. Vigorous exercise could result in relapse. Charles Shepherd said the problem was not just CBT and GET, there were other shortcomings and omissions in the Guideline. For example NICE did not mention immune dysfunction and the autonomic nervous system. Dr Miller said the guidance BACME would be putting out should help there. Professor Julia Newton had contributed on the autonomic nervous system and measures that can be taken to treat that.
    2.6  There was further discussion between Dr Miller and members about the need for better guidance, including the considerable numbers of patients referred who were found to have conditions other than ME. Dr Miller pointed out that he had said in the AFME magazine that any patient referred as having ME had to be approached with an open mind. BACME had no direct contact with NHS England and he was not sure it would be helpful to revise the NICE Guideline at this stage. Data from the NOD study was showing that some patients were worse after CBT or GET, some remained the same and at least one third showed improvement.
    2.7  Janice Kent expressed concern about GPs being not very good at diagnosis of ME/CFS. GPs in her locality wanted their ME patients to be seen by an expert doctor, but the bulk of patients referred to their local service did not get to see one. She was also concerned about the number of patients who were eventually shown to have other conditions (eg diabetes, vasculitis and lupus). Dr Miller commented that GP education was important, and access to good secondary care and accurate diagnosis were essential.
    2.8  Jane Colby drew attention to the plight of children with the illness. Doctors were getting these children to go back to school in a way that was like graded exercise which they couldn’t manage. If these children could then not attend school, Social Services were brought in and there were threats of Care Orders. Doctors should be considering other forms of education for these children. She said that Dr Mark Van Ness had shown how patients become more unwell a day or two after exertion. There had been talk in the media of patients being afraid of exercise, but Dr W Weir had written that fear of feeling unwell as an inevitable result of exercise was perfectly rational. She could not see why the Van Ness findings (scientific evidence) could not be used in revised guidance. Other members said that NICE seemed to confirm the erroneous view that ME is a psychosomatic condition.
    2.9  Dr Miller said there was nothing in the NICE Guideline to suggest ME was psychosomatic. Consultants like him were well aware that it was not. Until recently every patient referred to the Liverpool ME/CFS service had been seen by a consultant, but because of greatly increased workload they had reluctantly decided that patients with a positive diagnosis of ME/CFS from their GPs would go directly to therapy; the consultants would concentrate on those whose GPs were unsure about the diagnosis or where some other factor gave cause for concern. Figures given at a BACME conference had shown that 40 to 50% of referrals had gone directly to therapy (members pointed out that many of the services do not have a consultant). Regarding children, he said he was not a paediatrician, and at Liverpool they did not see anyone under the age of 18.
    2.10  Members asked Dr Miller to clarify his statement about the proportion of patients that get worse after CBT or GET. Dr Miller said the correct position was that two thirds show some improvement and the other third show no change – or in some cases they get worse.
    2.11 Sonya Chowdhury said that, regardless of what we think about NICE, the system was not working. What could we do to improve practice? At present some people were getting CBT or GET for whom it was not appropriate. We needed to counter the idea that all patients needed was vigorous exercise through exercise on prescription, for example. Dr Miller said that they had not been very happy with some patients not now seeing a consultant. BACME was very keen to have a clinician-led service but there were just not enough resources. However, at Liverpool every patient’s details were reviewed by a physician and each case was discussed with the therapists. They had picked up a Parkinson’s sufferer in this way. He believed all the centres were working in this way. Asked about Pacing he said he was not clear how it differed from GET but he recognised that some people needed a very gentle form of exercise, and he could advise them on drugs to control other symptoms.
    2.12 Referring to patients for whom CBT and GET were not helpful, Dr Paul Worthley said there were alternative treatments which some patients found helpful but GPs were disinclined to recommend them. Dr Miller said he was open minded to alternative treatments. If you take something that makes your symptoms better, that’s good but beware of anything that may be toxic or very expensive. The Chairman pointed out that the NICE Guideline says there may be alternative therapies that patients find helpful and they should discuss that with their GPs. Dr Miller agreed but said a number of patients in Liverpool had seen private practitioners at vast expense. Desperate people would grasp at anything.
    2.13 Dr Charles Shepherd asked if there was any guidance on consultants providing “supporting evidence” (eg in a letter for benefits purposes) to patients who needed it. Dr Miller said there was not.
    2.14 The Chairman thanked Dr Miller for his presentation and for answering so many questions.
  3. Minutes of last meeting (2 December 2014) were agreed to be a true record.
  4. Matters arising.
    Leaflet on Mental Health Act (item 6 of last meeting). Sonya Chowdhury said Cathy Stillman-Low had been unwell but hoped to resume work on this soon. She would be grateful for any comments members might have. Sue Waddle said some questions in this area could be very difficult to deal with – for example a parent who was in danger of their child being taken into care and facing large legal bills but with no Legal Aid. What could we say? The Chairman said it was very difficult to get any lawyer to do pro bono work now. Sonya said there was no “pot of money” available to provide for that level of legal help. Cathy was aware of that. The leaflet would be aimed at giving people the basic information they need – a starting point.  She would be in touch with national organisations that dealt with advocacy to see what might be put into the leaflet on that subject, so that people would know who the experts are that they could turn to. The Chairman referred to the TYMES leaflet on this subject which, she said, was very helpful.
  5. DWP
    5.1 Dr Charles Shepherd said not much had happened since our last meeting. The main item of news was the transfer of contract from Atos to Maximus who had taken on Sue Marsh, the disability rights campaigner, as their “customer experience manager”. The Chairman said she would ask Sue Marsh to come and speak at our next meeting. Charles Shepherd added that many of the Atos staff were transferring to Maximus and would continue to use the same premises, and the same DWP guidance on eligibility criteria.
    5.2 PIP. There was considerable discussion. Dr Charles Shepherd reported the MEA were getting more queries about PIP than about ESA. Christine Harrison asked members to send her their comments on PIP – what patients had told them etc – so she could take them to her meetings with DWP. She also advised people to ask for their DLA files because these would be destroyed after 18 months and they might be needed, if making an appeal, for example.
  6. Research
    Dr Paul Worthley asked for an update on the PACE trial controversy. Charles Shepherd said it had been heartening to see criticisms from professionals in journals such as the BMJ. Members discussed reporting in the media along the lines of “patients decline exercise” Dr Willy Weir had written a very good letter correcting these apparent misunderstandings and so had Dr Mark Van Ness. The Chairman offered to draft a letter to the Daily Telegraph; members to approve the draft. This was agreed. The editor of the Kumar and Clarke medical textbook had written to say that they were not prepared to change the entry for CFS/ME after consulting the authors. The Chairman would take advice from the MDU.
  7. Any other business
    7.1 Jane Colby reported that on Amazon you could buy a course of CBT for £39, and thereby become a certified CBT practitioner. She distributed a paper she had printed off. The certificate was apparently issued by some holistic treatment organisation.
    7.2 “Words to avoid”. The Chairman suggested that we should use the words “post-exertional malaise” in preference to “fatigue”.
    7.3 Dr Charles Shepherd reported the Royal Society of Medicine were organising a half-day seminar on ME on 18 March – for RSM members but there would be some seats for members of charities. He had written to Annette Brooke MP about a possible 5-minute slot on politics. If she could not be there would the Chairman be willing to speak? The Chairman agreed.
    7.4 The Chairmen referred to a report by the US National Institute for Health which had described the Oxford criteria as inappropriate and indeed damaging. She would put this in her letter to the Daily Telegraph.
  8. Date of next meeting – Tuesday 24 February – Sue Marsh