Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 2 December 2014, 2pm
Present: Countess of Mar (Chairman), Dr Charles Shepherd (MEA), Sonya Chowdhury (AFME), Bill Kent & Janice Kent (reMEmber), Jane Colby (Tymes Trust), Anita Williams (Tymes Trust) and Hannah Clifton (ME Trust). In attendance : Oliver Timmis, Dr Nicolas Sireau and Flora Raffai (AKU Society/Findacure).
1. Apologies had been received from Mary Jane Willows, Sue Waddle, Christine Harrison and Dr Paul Worthley.
2. Presentation by Dr N Sireau and colleagues
2.1 The Chairman welcomed Dr Sireau and colleagues and asked them to introduce themselves. Dr Sireau said he belonged to the Rare Disease Charity because both his children had Alkaptonuria (AKU), also known as Black Bone Disease. It is a condition characterised by black urine, and the bones become black and brittle. About 11 years ago a small, patient-led, group for those with rare diseases had been set up in Liverpool. It had grown and clinicians had joined it. They had done post-mortem and animal studies and were about to start on some promising looking clinical trials. The UK was the only place in the world that had dedicated services for people with these rare diseases. They now had a national AKU centre in Liverpool where patients aged 16 upwards could receive advice, tests and treatment including access to a very promising drug which slows the progress of the disease and very effective injections against pain (which can be considerable). They had been contacted by people from all over the world with AKU and other rare conditions (eg Behcet’s Syndrome). That is why they had set up Findacure, which Flora would be talking about. Sharing knowledge between patient groups, clinicians and industry was invaluable.
2.2 Flora Raffai explained that Findacure runs training workshops for patients on important subjects like how to manage on a budget, the role they can play in clinical trials etc. They bring in experts on these subjects, and patients can share their experiences which they find very helpful. They had set up a mentoring scheme which Hannah Clifton was involved in. They were trying to involve the scientific community more. Under an initiative called “Fundamental Diseases”, by studying the rare conditions they were also finding out more about commoner ones. For example, studying AKU had led to more knowledge about arthritis. Statins had been discovered originally through the study of one of the rare conditions. They hold conferences, and had recently held an essay competition for medical students as a means of improving their knowledge. Dr Nick Sireau added that under another initiative they were looking at further uses for the old generic drugs. Pharma companies were not interested in this because there was no money in it. Janice Kent said she would speak to a neighbour who was at Sussex University where they were doing some work in this area. Dr Sireau said this could be very helpful and could be a way forward for ME.
2.3 Oliver Timmis explained that he worked for the AKU Society and was one of the mentors for Findacure. He explained about the funding of the AKU Centre (they have received European money)and the clinical trials that were taking place throughout Europe.
3.1 Jane Colby explained to the speakers that a potential problem in setting up such a project with doctors to study ME as a physical illness was that many doctors regard it as a psychological condition to be treated with CBT or graded exercise as recommended by NICE. Dr Nick Sireau said he recognised this problem. Until about 10 years ago AKU had been regarded as a benign condition but the work they had done over the last 15 years had shown it had serious effects on the spine, heart, kidneys etc. This was now recognised by many doctors but some parents were still being told that the dark urine produced by their children was harmless or due to eating red cabbage etc. They knew of patients who had suffered from this condition for 30 years and had received no proper help; some had been referred for psychiatric assessment. What was needed was a large number of doctors and scientists who would stand up and declare the serious physical effects of the illness. In any case it was being clearly shown that mental health conditions, including condition such as OCD had a physical cause (ie in the brain chemistry).
3.2 The Chairman asked Oliver Timmis how we might get European money. Oliver referred to the EU “Project 2020”. There is much more money available there than from any UK source (they have just asked for £6 million), but just applying involves a tremendous amount of work, and you have to work with two other countries. You can find details by googling “Horizon 2020”. Dr Charles Shepherd asked if any European money was available for charities. Oliver said they had received some two years ago for patient support, communications, PR etc. A good contact on this subject was Alex Harris at the MRC – he was responsible for giving guidance on any applications from the UK on European funding.
3.3 Janice Kent asked about the place of personalised medicine in the rare diseases field. Dr Nick Sireau said it was very important. Personalised medicine and gene therapy were the way forward. He understood there were a number of sub types of CFS/ME. Oliver Timmis added that there were about 80 AKU patients in the UK but there were sub-types even among those. Dr Charles Shepherd commented that this was a very small database. Oliver agreed this would be tricky and that was why they were going Europe-wide for their next trial. Nick Sireau added they had recruited 129 from across Europe and that had been hard going.
3.4 That concluded the discussion. The Chairman thanked all the speakers and asked if we could keep in touch, to which they agreed. They handed out their cards and leaflets.
4. Minutes of last meeting (4 November 2014) & 5. Matters arising
The Chairman said she had put in some amendments; Christine Harrison had some more information about DWP matters to be added but she was unwell at present. Sonya Chowdhury asked whether the minutes needed to be so detailed because of the amount of work involved. Bill Kent said he could precis the notes if that were the wish of members; the audio recordings of meetings were kept for referral if necessary. However, the Chairman explained that when she set up Forward-ME it was agreed that in the interests of transparency, detailed minutes would be kept, although perhaps not attributed. Charles Shepherd said they were put on the MEA website and facebook and this provoked a lot of discussion. The Chairman said the feedback she received as a result of the minutes was very good. Jane Colby said she would send a small amendment on item 3.4 (effects of exercise).
6. AFME paper on Mental Health Act
6.1 AFME had decided there should be a detailed leaflet and a one-page guide. Cathy Stillman-Low who was compiling it had received pages of feedback. Sonya would send her the feedback from this meeting and subsequently come back with further proposals. The Chairman said Cathy should be thanked for her hard work.
6.2 The Chairman asked about the reference to Mental Health Advocates; was there a national organisation of them? If we could give them information about ME, that would be very helpful. Sonya said they came under a number of different organisations depending on geographical location etc. but we could perhaps engage with some of the bigger players such as MIND. It was important that someone knowledgeable should be able to intervene when detention under the Mental Health Act was threatened. The problem of transition when a young person reaches age 16 or 18 was also discussed. Sonya said that some advocacy services use “non-instructive advocacy”. It would be very helpful if we could link with a national body of such services. Members to let Sonya know as soon as possible about any additions/amendments they would like.
Dr Charles Shepherd said there had been an interesting meeting the previous week with Paul Lichfield. P Lichfield’s fifth and final review had been presented; he had a (very large) copy with him; it could be accessed on the website. On the same day the Government had produced its response to the Work and Pensions Select Committee.
Pressure on DWP had produced interesting results; over the past few years the number of claimants found fit for work had dropped and the number found unfit had risen. Feedback to the MEA indicated more people were now succeeding in getting into the “support” group, and “severe hassle” cases had significantly dropped. Paul Lichfield had said at the end of his report that a new assessment method would have to be found in the future. Is WCA really the best way of assessing people? Charles Shepherd had asked P Lichfield whether he had any plans to meet Maximus, the American company taking over from ATOS. He had said “no”, although Charles thought that he should. Mandatory Reconsideration had resulted in less appeals but Paul Lichfield was surprised that it hadn’t been better received by the public. There had been complaints about re-appraisal soon after successful appeals; in future there would be a minimum of eight months between appeal and re-appraisal.
Christine Harrison had circulated a PIP questionnaire to all members of the group with a request that they ask their members to complete it.
A report would be coming out soon on the first two years of the Biobank. MEA was launching a Christmas appeal for Biobank funds. The AGM of the Research Collaborative would be held at the Wellcome Trust on 17 December and will be livestreamed. The Charter of the Collaborative had been revised. Its annual Conference would be held in September 2015.
9. Any other business
9.1 The Chairman said her attention had been drawn to the BMA website of May 2014 which reported ME patients who were reluctant to accept treatment being referred to mental health. It was pointed out that this was contrary to the NICE guidance (patient choice, working together etc.). The Chairman had other concerns about reporting on ME in the BMJ and said she would speak to Baroness Sidney about it. The unsatisfactory response by NICE to our concerns was discussed.
9.2 Dr Charles Shepherd referred to the misleading entry in Kumar and Clark, and drew attention to the Oxford Textbook of Medicine (M Sharpe) which said that ME was a disorder or dysfunction of the Central Nervous System. It was a fairly recent entry (2 years ago?) and leaned towards the biomedical model – it mentioned retroviruses etc. It was agreed that no action should be taken in this case, but Charles said that a number of other medical textbooks were wrong in their entries on ME; it would be helpful if we could get a representative along to one of our meetings to discuss these inaccuracies.
9.3 The Chairman asked if anyone could let her know the telephone number for Dr Derek Pheby. She had to make a speech in a debate and he had promised to help her.
9.4 Jane Colby gave an update on the Judicial Review of the Scottish Parliament’s ‘State Guardian’ (Named Person) legislation, in which the Tymes Trust is a Co-Petitioner. A four-day hearing had taken place in the Court of Session in Edinburgh from 11-14 November. Judgement was awaited. Despite this, Named Persons were already being appointed ahead of time and families were reporting serious problems with them.
9.5 Dr Charles Shepherd said a MEA member had made a request under the Freedom of Information Act about provision for severe ME including training of clinicians and home visits. The answer was, in effect, “very little training and no home visits”. This tied in with the findings in Claire McDermott’s presentation to the recent severe ME symposium in London.
9.6 Sonya referred to the paper being produced by Karen about words to avoid in our publications, and asked members to send her any ideas.
9.7 Healthtalkonline – It was confirmed that Claire McDermott had been informed that Forward-ME would not support this project, and she had replied saying she understood.
10. Date of next meeting
20 January 2015. Speaker, Dr Alistair Miller of BACME. Members to provide the Chairman with questions for him.
The meeting ended at 3.25pm