Minutes of the Meeting held in the Television Interview Room
House of Lords
Tuesday 16 June 2015, 2pm
Countess of Mar (Chairman)
Dr Charles Shepherd (MEA)
Sonya Chowdhury (AFME)
Dr Paul Worthley (ME Trust)
Bill Kent (reMEmber)
Janice Kent (reMEmber)
Mr D Butcher (Chairman, Optimum Health Clinic)
1. Apologies had been received from Sue Waddle, Christine Harrison, Hannah Clifton and Jane Colby
2. David Butcher, Chairman, Optimum Health Clinic (OHC).
The Chairman welcomed Mr Butcher who stressed that he would not be delivering a “commercial”. He wanted to share with us the objectives and goals of the OHC which is a charity. He started by saying something about his background. He had worked much of his life in the pensions industry. He had “crashed” on 13 February 2012. Work stress, personal emotional trauma and infections had all contributed to his ME, although he was almost fully recovered now. However during his illness he had seen eight different GPs and two different CBT therapists, all to no avail. Outside the NHS he had found a great deal of quackery. What had helped him, he said, was the treatments he had received at the Optimum Health Clinic. There they combine standard medical practice with alternative therapies. One of the things he thought contributed to their success was their depth of personal experience. Eight out of fifteen practitioners there had suffered from ME themselves, had received treatment at the OHC, and had gone on to become practitioners themselves. Three out of four trustees at the OHC had suffered from ME. But he and Alex Howard, their CEO, were the first to be aware of their limitations.
2.2 Mr Butcher went on to admit that ME is an incredibly complicated illness. It takes many forms, and about 7% of those who attend the OHC go away without any improvement. And 90% of those who contact them do not proceed with treatment because of cost. But tests had shown that 93% of those who attend benefit in varying degrees. Many go back to work. Experience showed that certain therapies do work. From his own experience he cited tests for mitochondrial function which had led to a successful nutritional programme, and successful psychological intervention. He believed these had led to a calming down of the nervous system.
2.3 Mr Butcher now moved on to the OHC’s strategy – to promote optimum healing through the provision of “integrative medicine”, that is a mixture of conventional and alternative/complementary medicine. They seek to influence the NHS to adopt that integrative medicine approach. He was aware that would be a monumental task; the first step would be to provide the necessary evidence. They had already done a pilot for a full trial which had shown statistically clear improvements in patients, and they now wanted to move on to a full clinical trial. They had signed a partnership agreement with the University of Surrey for such a trial. But he felt that trial alone, even if successful, would not be enough to convince the NHS. He believed that, with the support of the healthcare professions and the Government (with the Back to Work agenda in mind) they should commission a study into all the costs of ME to the economy.
3.1 Dr Paul Worthley said a more integrative approach sounded good. But there were problems. For example, mitochondrial function had been mentioned. Would the NHS accept results of mitochondrial tests as valid, and proof of the effectiveness of e.g nutritional programmes? Dr Charles Shepherd said he had taken part in mitochondrial research and had been one of the first to demonstrate abnormal mitochondrial function in ME patients. But he worried about commercial mitochondrial testing, much of which had not been validated. A number of ME patients had paid a lot of money for such unvalidated tests. Professor Julia Newton and others at Newcastle were looking into this subject. These things needed clinical trials.
3.2 Referring to the integrative approach, Sonya Chowdhury said she supported this sort of initiative. There had been too much division of opinion in the past which had held back progress. But even more she supported economic meta-analysis. There had to be a strong economic argument to back our call for action and we should speak about this with one voice. David Butcher said he was very reassured to hear that reaction. If there was a way he could work with Forward-ME on this subject it would be great.
3.3 Janice Kent said reMEmber had run self-management courses for ME patients for a number of years. This was a form of complementary therapy which had delivered a measure of success. But she stressed the central role of conventional medicine and the importance of an accurate diagnosis. David Butcher agreed and said that conventional medicine was a key factor in the integrative approach.
3.4 Returning to the subject of meta-analysis, Sonya Chowdhury said that we might not all agree on integrative medicine but we all ought to agree on a sound economic argument. Other members agreed. Dr Charles Shepherd referred to two economic studies funded by ME charities some time ago. Both had been fairly accurate at the time. The possible cost was discussed. David Butcher said he had done some investigation; between £12,000 and £25,000 had been suggested. There was further discussion of mitochondrial testing; Mr Butcher related the programme he had used with success following his tests. The Chairman commented that the economic study should come first and the rest would follow.
3.5 Dr Charles Shepherd referred to the randomised controlled trial (RCT) which Mr Butcher had mentioned (para 3.2 above). A problem with such trials was what would the subjects be compared to? Janice Kent added that another problem was that in trials about 30% was the placebo effect. Mr Butcher said he recognised these problems; the development of controls was part of the process they would be going through in the coming months. He would welcome the benefit of members’ expertise. Saying you will do a RCT is one thing. Getting controls and measurements right, and producing a sound scientific study with valid results is another.
3.6 The Chairman referred to the people who are housebound and bedbound. How could they be brought into such a study? Janice Kent said correct diagnosis from an expert consultant – not a GP – was essential. Mr Butcher said these were good points, and he didn’t have the answers today, but they had about 12-15 months to get to the bottom of these key issues. Sonya Chowdhury said they should build on previous studies in this area. Dr Charles Shepherd referred to the paper (NIH Pathways to Prevention – USA) which the Chairman had circulated that morning; it was an update on all aspects of ME.
3.7 Janice Kent asked if the OHC used meditation. Mr Butcher replied that they did, among other therapies. He had used meditation himself; he was sure it had been key in his recovery. Other management techniques such as pacing were discussed. Members agreed that the success of these methods depended upon the patient wanting to engage with them.
3.8 Referring to alternative and complementary therapies Dr Paul Worthley pointed out that the NHS required treatment methods to be evidence-based. Members discussed alternatives such as diet and nutritional supplements, some of which patients found helpful, although some treatments could be expensive. The Chairman commented that most GPs (unlike vets) seemed to know nothing about nutrition. Referring to evidence-base, Janice Kent asked whether the Van Ness study had indicated mitochondrial disorder. Charles Shepherd and Sonya Chowdhury replied that it had, but the findings had not yet been replicated/validated.
3.9 Dr Charles Shepherd asked what was the cost (roughly) for a course of treatment at the OHC. Mr Butcher replied that, to be of any help, four sessions would be needed which would cost about £1,000.
The session then ended with the Chairman thanking Mr Butcher for his presentation and answering our questions. She said it would be useful if we could work together and keep in touch. Mr Butcher gave members copies of the OHC booklet.
4. Minutes of last meeting ( 24 February 2015)
The minutes were agreed as a true record.
5. Matters arising
5.1 The Chairman said Christine Harrison had made one or two points. She had mentioned SNOMED. We were awaiting a reply from them. Christine had said they should include “ME” as well as “CFS”; she would write to them.
5.2 A speaker from NHS England. The Chairman had received a letter from Sir Bruce Keogh. Dr Martin McShane would come to speak to us at a future meeting.
Sonya Chowdhury suggested we should agree in advance the key points we would put to him. The Chairman agreed and said she would write to Dr McShane about that.
5.3 Sue Marsh, Maximus (speaker at the last meeting). Dr Charles Shepherd said he had had some correspondence with her. He had put some comments about her talk in the MEA magazine, for which she had thanked him.
5.4 Dr Alistair Miller (item 5.1 of last meeting). The Chairman had decided not to write to him again.
5.5 Leaflets on the Mental Health Act (item 5.2 of last meeting). Sonya Chowdhury said it had taken some time for all comments to come in but re-drafting was now taking place. She also confirmed that the fact sheet on supporting evidence for DWP purposes was now complete.
6.1 Dr Charles Shepherd spoke about recent reports, including the NIH Pathways to Prevention Workshop which he thought they might have some effect in the USA; it was a pity that UK clinicians had not produced something similar. The Chairman said she had sent a copy to Dr Mc Shane, and Sonya Chowdhury said it would come up at the Research Collaborative.
6.2 Janice Kent referred to the suggested economic meta-analysis. Could the cost/benefit of early or late referral and diagnosis be investigated? Sonya Chowdhury said that would need to be a separate study from an analysis of the overall cost of ME to the community.
6.3 Dr Charles Shepherd referred to the MEA’s most recent survey of patient’s views on CBT, GET and Pacing. The results were similar to those of previous studies. There was some support for CBT but not GET, and Pacing was still liked best. The report would be sent to NICE, NHS England, DH and others.
6.4 Dr Paul Worthley reported on a quality of life study done with Kent University over 2 years and which was completed recently. It focused on care at Burrswood Hospital and asked ME patients what they had found helpful. He handed the Chairman a copy of the report and agreed to circulate it to members.
6.5 Sonya Chowdhury reported that the mitochondria/DNA project had started at Newcastle. This was an AFME project, and the MEA had contributed £5000. Janice Kent reported reMEmber had donated £5,000 to Dr Amolak Bansal to further his research into apparent cortisol dysfunction in ME patients. Dr Shepherd reported that the Biobank was seeking an administrator. On Rituximab he said that one of the best presentations at the recent Invest in ME conference had been on this subject by the Norwegians; the phase 2 trial results were due out soon. But there hadn’t been any news about the start of the UK trial (UCL and Jonathan Edwards). Sonya Chowdury reported one of the Norwegian team would be speaking at the UK Research Collaborative Conference.
7.1 Dr Charles Shepherd said there was little to report. There had been no further meetings of the Fluctuating Conditions Group. He would be meeting Maximus soon to discuss the semi-structured interview.
7.2 Sonya Chowdhury said she had been in correspondence with Mark Allerton of DWP about the evidence-based protocol for CHCA professionals. She would circulate the final version in due course. Dr Paul Worthley mentioned that someone with ME had been involved in the delayed PIP court case.
8. Manchester Project
Sonya Chowdhury explained that the Greater Manchester devolution plan, due to start from April 2016, involved expenditure of £26 billion. This would be a great opportunity to ensure the needs of ME patients are not overlooked. AFME had suggested a forum of groups to inform plans for ME. Some groups seemed happy to work with AFME but two were not. AFME would be very happy to work with any other charities (including those for people with other conditions) that might be interested. The Chairman mentioned that they were talking of bringing Health and Social Care together which she thought would be wonderful. Dr Charles Shepherd said that unfortunately MEA did not have the resources to take part in such a forum. Sonya said AFME recognised that problem, and that it could apply to other charities too.
9. Any other business
9.1 The Findacure seminar. Janice Kent reported that the focus of the seminar had been drug repositioning. It had been claimed that one ME organisation had got involved, but nobody seemed to know which one. Janice said it was clear that any organisation wanting to go into it needed to be big, have doctors with projects they are working on, and, ideally, have a mouse model to work on. reMEmber had spoken to Dr Amolak Bansal who said much more investment and input would be needed.
9.2 Dr Charles Shepherd said he had concerns about the journalist, David Aaronovitch, and the way he dealt with news items concerning ME/CFS. Someone had put up on the internet that he would be speaking with Simon Wessely at a psychiatric conference.
9.3 The Chairman congratulated reMEmber on getting the Queen’s Award for Voluntary Service.
9.4 APPG. Sonya Chowdhury said there would be a meeting on 1 July to get a Chair; there were now enough members. She also mentioned she would be going to a WHO event in Geneva in September. She was working up a paper on ME to present to them.
10 Future speakers
The Chairman had invited Amolak Bansal but had not heard from him yet.
The meeting ended at 3.25