Minutes of the Meeting held in Residence 1, House of Lords, Wednesday 13 March 2019

Present: Countess of Mar (Chairman); Carol Monaghan MP (Vice-Chairman); Hannah Clifton – Director M.E. Trust; Charles Shepherd – ME Association; Helen Dawes – Oxford Brookes University; Suzie Henson-Amphlett  – Tymes Trust ; Esperanza Moreno – ME ACTION; Gareth Tuckwell – ME Trust ; Christine Harrison – BRAME; Sam Bromiley – Action for ME;
Sue Waddle & Simon Phillips – ME Research UK; Willy Weir; and Tony Crouch.

1. Introduction and Apologies – The Chairman gave apologies from Nigel Speight, Sarah Reed, Janice Kent, Jonathan Davies, Philip Gowan, Nigel Speight, Nina Muirhead and Bill Kent, Paul Worthley. She then introduced  Professor Helen Dawes. The Chairman stated that data from the patient evidence survey on CBT and GET, along with the report that had been prepared by Professor Helen Dawes and colleagues, had been submitted to NICE and there had been a positive response.

2. Introduction of Professor Helen Dawes’ Research
2.1. Professor Helen Dawes, Deputy Director, Oxford Institute of Nursing, Midwifery & Allied Health Research described the findings of the Forward-ME survey on CBT and GET. In terms of the demographics, 8% of respondents were under 18 years and 9% were over 60. Professor Dawes walked the group through each of the slides. Where ‘N/A’ was written, this referred to those who gave responses which couldn’t be categorised. Figure 7 described the impacts of CBT on physical and mental health. Professor Dawes reported that most participants said that they had not experienced any improvement, and that some participants had said that they had experienced a period of deterioration. She added that Figure 9 shows that participants reported CBT as having no impact on benefit use.
2.2. Professor Dawes described the graphs (Figures 10-14) which show participants’’ reports of the effectiveness of GET. She reported that, in terms of completion, 60.7% of people didn’t manage to complete GET and GET tended to lead to a deterioration in both mental and physical symptoms rather than an improvement with 81% of participants reporting a worsening of symptoms and 83% reporting that GET had no impact on benefit claims.
2.3. Professor Dawes examined the graphs which considered combined treatments and explained that, when participants had combined treatment, they were given the option to report on both GET and CBT. Figures 15 and 16 show that, when CBT was combined with GET, 70% of respondents completed the programme and the addition of GET led to a deterioration in their mental and physical symptoms. Professor Dawes concluded that CBT combined with GET appears to lead to a worsening of symptoms compared to CBT on its own and had little, if any, impact on benefit claims. 
2.4 Professor Dawes described Figures 19 and 20, reporting that GET combined with CBT had led to better completion rates than GET on its own and physical deterioration was higher than mental deterioration, when combined. Professor Dawes summarised the combined treatments, reporting that, when combined with CBT, 86% of respondents reported that GET made symptoms worse but that CBT on its own didn’t appear to be as detrimental as CBT and GET combined.

3. Discussions and questions relating to survey results
3.1 Dr Charles Shepherd drew the group’s attention to an important statistic on the executive summary – that 41.5% of respondents reported that their mental health had improved, following CBT. In response, the Chairman explained that she had recently had a discussion about CBT with Dr Paul Chrisp concerning the two types of CBT which are being used; one of which is a directive and the other supportive. The former assumes that symptoms are psychological and the patient just needs to pull themselves together with persuasion; the latter recognises that the patient is physically ill and helps them to manage their symptoms. She suggested that it is important to distinguish between the two and consider the relative success of each.
3.2. Sue Waddle thanked Professor Dawes and Sam Bromiley for their hard work, particularly considering the short time-frame.
3.3. Esperanza Moreno raised her concern about the phrasing of the report, not least the use of terms such as ‘perceived’ rather than ‘reported’. Suzie Henson-Amphlett questioned whether this wording might be problematic, when the report comes under wider scrutiny. The Chairman explained that NICE were very happy with survey results, as they stand, and that they fully understand the shortage of funds and time. She also suggested that, when the report goes on the Forward-ME website, a joint statement would need to be formulised which would need the whole group’s support. Christine Harrison explained that the semantics are important and that ‘perceptive beliefs’ will trigger an alarm bell for many. She also stressed that the summary must highlight the finding that the majority of patients report no improvement or a worsening of symptoms.
3.4. Hannah Clifton agreed and said that it is important to focus on the statistics which show that 80% or more patients are worse off having taken these treatments and that this should be put in the joint statement. Professor Dawes agreed to make the necessary changes to the report, at no further cost, but raised the question of whether the report could be converted into a research paper. It was agreed by the group that this would be a positive step and Sue Waddle showed her support by explaining that, as a research charity, ME Research UK always sought to fund journal-worthy research.
3.5. Dr Charles Shepherd explained that he got the impression that the report findings would be discussed at the next NICE guideline committee meeting on March 29th and suggested that it would be helpful if Professor Dawes was able to meet the committee to explain her findings. The Chairman said that Paul Chrisp had agreed to send the report to the members of the guideline Development Group and that Baroness Finlay and Peter Barry had already received copies.
3.6. Christine Harrison referred to her own survey which considered patient experience between 2001-2010 and explained that she would like to compare Professor Dawes’ research with her own to see if anything has changed. The Chairman agreed and suggested that she consider the ME Association and Action for ME similar research too.
3.7. Dr Charles Shepherd raised a question about caveats in the report, particularly in relation to research methods; paper surveys were not used, nor did the researchers speak to patients who have recovered. 
3.8 The Chairman summarized the discussion on the report findings, saying that the paper validates what the group know about these treatments from a clinical and scientific point of view and she hopes it receive the publicity it deserves.

4. Minutes of meeting held on 21st November
4.1. The Chairman explained that Philip is caring for his father but, once he has recovered, will be able to take the lead on communications.
4.2. Dr Charles Shepherd said that, as far as he knows, no word has come back about the grant application from the CMRC which was submitted late last year and that it might be several weeks before he hears back.

5. NICE Guideline Development Group progress
5.1. Dr Charles Shepherd reported that Dr Paul Chrisp would like communication from this group about what they would like to see in the new NICE guidelines. Christine Harrison said that she would like to see important phrases retained in the new guidelines and which had been used for legal purposes – for example: “If you refuse treatment, it will not be detrimental to future care”. The Chairman asked the group to make a list of items which they would like to retain in the new NICE guidelines. She also mentioned that it is important to highlight the positive aspects of the guidelines which are currently being obscured by CBT and GET and suggested that the pediatric section be brought to the front of the guidelines.
5.2. The Chairman described a recent debate in the House of Lords on the misuse of medical devices which highlighted the fact that, in the majority of cases, the claimants are women, and many are often ignored but also expressed her confidence in the NICE guideline committee’s commitment to ensuring that the patients’ voices are heard.
5.3. Willy Weir  expressed his concern about the representation, or lack thereof, of pediatric specialists in the committee and that, as far as he knows, the single remaining vacancy is for a pediatric nurse.  Christine Harrison suggested that the problem with the guideline committee can often be the grading system, not the Chair.
5.4. There was then discussion about a Channel 4 Dispatches documentary and Sue Waddle agreed to send it to the Chairman.

6. RCGP conference report and future arrangements
6.1. Dr Charles Shepherd reported that he had spoken to Tim Mustin, who is the organiser of the RCGP conference and, whilst Tim was keen for the group to attend, he is not able to offer a discount this year.  Dr Shepherd estimated that the overall cost of attending the conference with a stand/session was £1500. 
6.2. There was then wider discussion about the prevalence of general physicians in the NHS. Dr Willy Weir suggested that there was evidence of a malaise within the NHS and suggested that medical schools are breeding a generation of specialists who are simply organ technicians. The Chairman gave the example of her own surgery late last year. Dr Gareth Tuckwell said that the exception to this recent trend was palliative care.
6.3. The discussion returned to the RCGP conference and Suzie Henson-Amphlett suggested that, if the group were to choose an alternative conference, they might be able to get an introductory discount.
6.4. In terms of funding, Sam Bromiley said that AfME were willing to help fund the conference and the Chairman suggested that the group produce a composite leaflet.   The group made the decision to book the conference and AfME agreed to take responsibility for the logistics but would only be able to do so, from June onwards. Sam Bromiley also reported that Nina Muirhead had some good ideas for a leaflet and had  expressed a desire to write a report.

7. DWP, IAS, Capita, Maximus
7.1. The Chairman thanked Christine and Tanya Harrison for their work with DWP.
7.2. Christine Harrison then provided an update on her communications with DWP, Capita and Independent Assessment Services (IAS) She went on to explain that Capita had produced a more concise document which contained all the relevant information in it, whereas IAS’s document was far more detailed. She had been continuing to call for medical training to be videoed in order to improve further training programmes and that this would be realised on the following day when she and Dr Weir were to give presentations to both Capita and IAS. She also reported that Capita and IAS assessments should now be less traumatic and more sensitive and accurate leading to fewer tribunals. She asked that Forward-ME members contact her should this not be the case.
7.3. Christine Harrison then described her interactions with Ministers and praised the current Secretary of State (Amber Rudd MP) and the Minister for the Disabled (Sarah Newton MP) for her interest and genuine desire to see real change. She explained that those who are chronically ill should no longer be regularly assessed as and that she has managed to get severe ME included in the list of those who would be considered to be eligible for paper-based review. She the then went on to say that, if a person is reviewed in person, it is likely to be a long-term review. Those who are pension age or above should also no longer be reviewed, unless they report a change in their condition. She also reported that it had been acknowledged that it would probably be helpful for the claimant, DWP, IAS and Capita to combine assessment for PIP with assessments for other benefits, though there was no indication as to when this would happen.
7.4 Carol Monaghan responded by describing her experience with the DWP and civil servants. At a recent meeting, she reported that they had insisted that assessments should be completed by those who have an awareness of ME and that they were very surprised to hear that this wasn’t the case for all patients.
7.5. Suzie Henson-Amphlett then proposed the issue of accountability, or lack thereof, in some of the contractors.  She asked whether there was anything in contracts which required organisations to keep up to date with the regulations and, if they didn’t, that they would face hefty fines. No-one in the group was aware of any punitive measures which had been used and, in response, Suzie requested that a requirement be put in contracts, which would make these organisations liable to pay fines, if they don’t meet the treatment needs of patients.
7.6. Dr Charles Shepherd reported that he had attended a meeting recently with Sebastian Hanley and the customer relations group from Maximus, who carry out ESA medical assessments for the DWP. He also explained that Maxima had expressed their confidence in their current delivery and reported patient satisfaction of 90%. He also said that Maximus had expressed their confidence in their current delivery and reported patient satisfaction surveys relating to health professionals of over 90%. He also said that Maximus were genuinely trying to improve the patient’s journey through ESA, that they have produced a letter which argues that GPs should not be charging for letters and that they are trying to reduce assessment centre waiting time. With regards to home visits, Dr Shepherd reported that Maximus are willing to provide home visits, if the GP can provide written confirmation that the patient is too unwell to visit hospital or a GP practice. Maximus are also happy for audio recordings to take place but that, at present, only 1% of patients are requesting them. Dr Shepherd also explained that Sue Marsh had made an offer for Forward-ME to get involved with their reports, which are written by health assessors and aim to give the patient voice. He also suggested that Chairman attend one of these meetings to speak about the role of NICE guidelines. In response, the Chairman explained that the continued lack of attention paid to carers’ evidence was concerning, particularly in light of Government Ministers’ recognition that a carer’s evidence should be given the same weight as a doctor’s. Suzie Henson-Amphlett highlighted the fact that the carer is often a parent and there is, therefore, an obvious conflict of interest and the parent is seen as nothing more than an ‘interferer’.

8. Research
8.1. The Chairman referred to some recent research Esther Crawley which, she suggested, was not entirely convincing.
8.2. Simon Phillips then handed out ME Research UK fliers with information about recent research from the United States. He briefly described the research from Jared Younger, University of Alabama and Professor Rincon, Vermont. He explained that he would provide further updates to the group about their research.
8.3. Sue Waddle reported that she was pleased to hear that researchers were now vigorously pursuing the ME biobank and that, when grant applications were made, ME Research UK were actively encouraging researchers to it for samples. She also highlighted an Aberdeen study which she agreed to send to the Chairman.
8.4. The Chairman said that she had recently sent out a paper on ethics by Diane O’Leary which had received an excellent reception.
8.5. Suzie Henson-Amphlett reported that she had received a message from Keith Geraghty, in relation to his paper about the importance of accurate diagnosis in children and adolescents, saying that his short paper had over 500 views.
8.6. The Chairman said that she would send Dr Max Davie a copy of Keith’s paper and express her disappointment with Dr Davie’s reported description of ME/CFS in children in the RCPCH material, especially as he had met with Forward-ME recently.
8.7. Dr Charles Shepherd explained that ME Association fund Keith’s research and that, if there was a gap for a speaker at one of the Forward-ME meetings, that he’d be good to invite. The Chairman agreed to send a speaking invitation to Keith.

9. IAPT and other business
9.1. The Chairman described the IAPT training manual, referring to it as a piece of “brainwashing”. She had not yet had a response to her last letter from Professor Powys.
9.2. Dr Charles Shepherd alerted the group to a podcast which would be uploaded this week which featured the Chairman.
9.3. Dr Willy Weir suggested that, within the new guidelines, there needs to be a requirement for GPs to look out for the early signs of ME. The Chairman agreed that this would save DWP and the NHS a lot of money. There was also a wider group discussion about the importance of bedrest and Willy Weir gave the example of polio.
9.4. Suzie Henson-Amphlett gave the dates for Carers’ week (10th-16th June) and Carers’ rights day (29th November).

Meeting concluded.