Forward ME Group | Minutes of meeting held on 2 July 2013

July 31, 2013

The Minutes archive for the Forward ME Group is held at

Forward ME
Minutes of the Meeting held in the Television Interview Room
House of Lords
Tuesday 2 July 2013, 2pm

Countess of Mar (Chairman)
Janice Kent (reMEmber)
Bill Kent (reMEmber)
Jane Colby (Tymes Trust)
Anita Williams (Tymes Trust)
Christine Harrison (BRAME)
Sue Waddell (MERUK)
Dr Charles Shepherd (ME Association)
Sonia Chowdhury (AFME)
John McCready (AFME)
Mary Jane Willows (AYME)
Hannah Clifton (ME Trust)

1. Apologies had been received from Anne Faulkner.

2. Professor Stephen Holgate had been invited to speak on the Research Collaborative.

2.1 Prof Holgate referred to the launch at the Wellcome Trust in April. He said he had first encountered ME in his allergy clinic about fifteen years before. Subsequently he joined the Medical Research Council where it became clear to him that there was a problem with ME; a lot was to do with a lack of understanding about the condition. He told the then Chief Executive of the MRC that this needed to be sorted out; this led to him being appointed to lead a small group to look into the matter.

2.2 The group convened a meeting near Oxford, bringing in researchers from outside the ME world to examine why nothing much had been done up to then. Surprisingly several expressed enthusiasm to do something. They got five grants from the Medical Research Council totalling £1.6 million to research aspects of ME (the MRC were surprised at the standard of the grant applications). Since then he had been in talks with Dr Charles Shepherd, Sir Peter Spencer and others which led to the proposal for a research collaborative. He saw two main reasons to go forward with this; firstly because of the lack of recognition of the problem by doctors. Secondly because he believed that we may be dealing with twelve or fifteen different disease processes, not just one, and that we have been treating just the symptoms, not the cause, therefore we were missing opportunities to develop the right treatment.

2.3 Prof Holgate said that at one point he organised a meeting in Southampton to discuss the ideas of various researchers. Professor Hugh Perry (inflammation neuroscientist), among others, had attended, and he had commented on the poor quality of research. Studies had been based on poor data, and many were small, not very scientific studies. There were individuals who had “made a career” out of theories that were sometimes shaky. It was clear this had to change. He had also discovered there was a low level of funding – and fragmentation of funding. He was determined that these problems should be addressed, and he acknowledged that over a period of 20 years this had led to a breakdown of trust between patients, healthcare providers, researchers and industry.

2.4 Prof Holgate said there is a fantastic emergence of new science and so now was a good time to research ME. The main problem for medicine these days were the non-communicable long term diseases and the linear relationship between cause and effect breaking down. There was a complex issue here; the models used until just a few years before by the pharmaceutical industry, academia and medicine no longer applied. There was now a need to focus on causative pathways – and in any one disease there can be many (eg in breast cancer there are 14). The only way to tackle this is to understand the pathways. To do this we need to get data on a large number of patients

2.5 The Professor explained that the method would be to collect samples from about 5,000 patients and explore the cells, genes, genotypes, phenotypes etc. the patient was always the centre, and it would be a wonderful opportunity to use new computer technologies to understand the causative pathways and how they affect each patient. He said that if you know the pathway you know the way to deal with the disease, and that was the way to get the drugs industry involved. Realistically there is a need to prioritise research but there is also a need to collect and record phenotypes of individuals.

2.6 Prof Holgate said that getting industry, academics and medics working together in this way is what the collaborative is all about. It would be necessary to raise a lot of resources for this, and a greater outreach was needed to get the whole community behind raising these resources. High quality scientists would then have to be involved to look at applying the new technologies to the data generated from patients. But there had to be a multi-disciplinary approach, and nurses, for example, would be just as important as mathematicians in this operation.

2.7 When the collaborative was launched on 22 April, Prof Holgate said, there was great enthusiasm all round for the science, but there was no forum where all these different people could get together. So he thought an Annual Scientific Conference was necessary. But patients must be involved in that too – and not in a confrontational way or just in a Question and Answer session. The patients must be partners in this process.
2.8 The Professor concluded his presentation by referring to announcement the day before that the National Institute of Health in the United States would be giving $1,558,225 (£1,029,411) to the London School of Hygiene and Tropical Medicine for the ME/CFS biobank project. That was a most generous incentive; now the hard work had to begin.

3. Questions etc to Professor Holgate

3.1 The Chairman said that Anne Faulkner had sent apologies for not attending the meeting but had submitted two questions. The first related to the number of people with the illness; what definition of the illness would the collaborative use? Prof Holgate said that the Fukuda and Canadian definitions were widely accepted and numbers could be assessed from those, but really we had no idea of the prevalence of the condition because in his view it was not one condition. Most illnesses could be expressed in many different ways – he gave asthma as an example. What was needed was an epidemiological study which would identify several “clusters” of different conditions that currently come under the umbrella heading of ME/CFS. A number of diseases were now being classified in that way.

3.2 Anne’s second request was clarification of the reference in the Collaborative’s constitution to “harassment” of researchers. She could not ask her trustees to sign up to a clause which would prevent them disputing a particular line of research. Prof Holgate said one had to distinguish harassment from rational debate. He referred to serious threats – and actual attacks – which had been made to researchers by some animal welfare organisations in the past; in some cases these had resulted in prison sentences. Some of his young researchers had received threats. If people’s lives and freedom were threatened they would be frightened and they would no longer work at this important subject.

3.3 The Chairman said we understood this but many were unhappy about the requirement to sign the two clauses. Could the Professor take that back to Executive Board? Prof Holgate said he could not give an undertaking to remove that requirement but it could be looked at again in a year or two. Sue Waddle said that as a magistrate she was familiar with the meaning of harassment and that if anyone felt they were being harassed they should take the matter to law via the police. Christine Harrison suggested that the Collaborative issue a definition of “harassment” as respectful questioning of research should not be seen as personal harassment. Hannah Clifton said there may be a legal definition and suggested that the ME Trust lawyers could be asked to look into that. Professor Holgate said that could be looked at and he thought it a very good idea.

3.4 Janice Kent referred to the Southampton conference and spoke of the need to involve people like Professor Hugh Perry – and patients. Prof Holgate agreed. Careful planning would be needed. Patients, charities and the public must come to the Annual Scientific Conference. In most areas of medicine now the patient voice was recognised and valued. Dr Charles Shepherd added that the collaborative board wanted to bring patients in at various meetings so that they could meet researchers. Prof Holgate added it was also so that they could help set the agenda for the researchers.

3.5 Referring back to prevalence of the illness, Dr Shepherd agreed epidemiological studies were necessary but, with (eg) investigation of Rituximab in mind, was there not a need for some figure for researchers to work with now? Prof Holgate said that an overall figure could be problematic. Take Rituximab – suppose it turned out in most cases to be negative, but perhaps 10% might benefit from it? You could be missing a fantastic opportunity for that minority. “One size fits all” was not appropriate; we must find the underlying cause of the illness first. It might take two to three years but it would be worth it.

3.6 Christine Harrison referred again to criteria for the illness (eg Fukuda v Canadian) and asked if there should not be an agreed definition after all this time, such as the latest International Consensus Criteria for ME (2011) which were both clinical and research criteria. She suggested that there was no place for the Oxford Criteria any more. There was Prof Holgate said these definitions (Fukuda and Canadian) had been arrived at by groups of people sitting around tables, but they were all based on hearsay. They were the best we had at the moment, but what we needed was good epidemiology, the collection of high quality information from a large number of patients – say 5,000. IBM or Microsoft would be good people, with their sophisticated technology, to open up symptomology, phenotyping etc.

3.7 Before putting her question, Jane Colby contributed a point on harassment: scientists were not unique in being harassed. Both she and the Chairman had been harassed and had needed to call the police. With regards to the perception of a divide between scientists and patients, she explained that doctors she had worked with had pointed out that there was not so much a divide between patients and medical professionals over ME, it was a divide between different medical professionals with patients caught in the middle. She then asked Professor Holgate for confirmation that his talk was about the host response to environmental factors. Professor Holgate agreed. Using the examples of AIDS, poliomyelitis, and the rotovirus, Jane then said that these viruses had been identified and tackled because people were dying. She then asked why , in view of the significant numbers of patients being found with dsRNA in their stomach biopsies, was enterovirus not being further researched as a likely cause of the disease? Prof Holgate replied that the likelihood of just one organism or virus being responsible was probably zero. Examination of genes might identify some viruses as the likely cause, but not one specific virus. Furthermore the same virus could affect two people differently – one severely, one mildly.

3.8 Professor Holgate concluded by referring to a list of priority research interests that was being drawn up by the charities on the Executive. Sonya Chowdhury had been collecting a list of priorities from each of the five charities that sit on the Research Collaborative Executive Board. AfME’s priorities were based on an on-line survey undertaken with supporters. Professor Holgate thought that, once a short list of, say, ten research proposals, as many charities as possible should be asked for support to co-fund their chosen one. The Chairman said that when the Collaborative was ready she would bring it to the attention of all the ME charities. She thanked Professor Holgate for an excellent presentation and discussion

4. Minutes of last meeting (14 May 2013) were agreed to be a true record.

5. Matters arising.

5.1 Jane Colby said she had sent that day to the Chairman details of a parent’s complaint about a hospital (item 7.3 of last meeting). The Chairman confirmed that she had received it but that she required further details if she was to forward a complaint to the Royal College of Paediatricians.

5.2 The Lightning Process (item 3 of last meeting). Bill Kent said he had contacted Dr Esther Crawley about the SMILE project (scheduled to finish in July 2012). Dr Crawley had informed him the study had not yet finished but they hoped to publish some early findings soon.

5.3 DWP (item 4 of last meeting). The Chairman reported a very good meeting with Lord Freud and had given him details of a number of concerns about Atos and DWP treatment of people with ME. Dr Litchfield’s PA had also attended that meeting. Dr Shepherd reported he would be meeting Dr James Bolton on similar matters. She had handed a copy of Christine Harrison’s letter to the Minister for the Disabled on her continued concerns over PIP to Lord Freud.

5.4 PACE Trial – Press Complaints Commission (item 5.2 of last meeting). The Chairman reported she had publicised our upheld complaint with a website link.

5.5 Hannah Clifton, Burrswood (item 7.1 of last meeting). The Chairman introduced Hannah, a former City lawyer. After 10 years with severe ME Hannah went to Burrswood Hospital in Kent where she made a good recovery. Burrswood provided patient-centred, individually tailored care and has been helping people with ME for more than 20 years. Hannah was now Patient Liaison at Burrswood and Founder of the ME Trust. The Trust, in association with Burrswood aimed to create a Centre of Excellence for ME and to be an NHS centre for referrals, as well as a model for other institutions.

6. DWP

6.1 PIP. Christine Harrison said she was still fighting on this subject. The DWP were going to look again at the mobility section. There was an additional consultation on the mobility component, ‘moving around’ and the 20 metre rule, of the PIP criteria from 24 June to 5 August to which people could respond. She had been to Capita to see their training manual etc, and had just been to Atos. She would be feeding back on their training material. She had formally asked Capita, Atos and DWP which of them has responsibility for signing of their training guidance (answer not yet received). The Chairman said she would ask for a copy of that guidance to be put in the House of Lords library.

6.2 Atos. The Chairman said she and Annette Brooke MP had been to see Atos at Marylebone where they had been given a presentation of the procedures a claimant would undergo, followed by a video of an assessment using an actor instead of a patient.

7. Research

It was agreed that Professor Holgate’s talk had been very good. On Rituximab Dr Shepherd said that people were raising money for a trial in the UK, and the MEA would be putting out a statement the following week. The problem was that so far no-one in the UK wanted to do that research. Also it would be very expensive – probably around £400,000, so more funders would have to be found. Sue Waddell said we needed to make it clear that there had been good research in the past.

8. Parliamentary Bills.

The Chairman referred to two Bills currently before Parliament, the Social Care Bill and the Children and Families Bill. She had written to the relevant Minister about children with ME being taken into care.

9. Janice Kent pointed to the lack of knowledgeable doctors. The Chairman suggested we discuss all these matters at a meeting in October.

10. AOB.

Christine Harrison gave an update on the progress of the ME and CFS Service User Group had made in developing the Norfolk and Suffolk ME and CFS Service, and how hard the local Patient Representatives on the group had worked for the past 6 years to achieve this. A Needs Assessment for Norfolk and Suffolk had been produced. It formed the foundation for the new Service Specification, which had been created between patients/carers and PCT representatives to create a consultant-led biomedical service. Separate pathways had been established for ME and CFS based on different criteria and diagnosis. Management of CFS and ME would be different. This was a ground-breaking achievement and patient representatives would begin to work with newly-formed CCGs.

11. The meeting finished at 3.30 pm

2 thoughts on “Forward ME Group | Minutes of meeting held on 2 July 2013”

  1. An annual scientific conference sounds a very good idea for making progress.
    Of course, Invest in ME already has such an event; could everyone co-operate to stage a single conference? The possibilities are enormous.

  2. I ageee with the above comment; reading the reports of the Invest in ME conference there seemed real possibilities with bio-medical research moving forward at last, and so hope. As a novice to this political world it seems -dragging heels, vested interests, re-inventing the wheel style- why the collaborative does not join the research interests explained at IIME conference.

    Many of us parents are fatigued with ‘epidemilogical’ studies; being told what is, when we provide much evidence for years from many appointments from many parents which is seemingly ignored. As asked we have put forward our suggestions to the charities, seemingly ignored, as epidemilogical studies are not a choice or priority of our children and young people. Specific biomedical research is.

    Point 3.4 of the minutes talks of the collaborative wanting to “bring patients in to meet researchers”, this does not sound like patients / carers being a real partner, but a token when approriate.

    When the final list of MRC Collaborative research priorities are drawn up, it may be difficult for us to continue paying as members of charities, if some if this funding is going to such out dated priorities from our children’s point of view.

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