21 April 2009

Held in Residence 1 at the House of Lords, 21st April 2009


Countess of Mar (Chairman)

Tanya and Christine Harrison – BRAME

Bill and Janice Kent – ReMEmber

Sue Waddle – MERUK

Jane Colby – TYMES Trust

Mary-Jane Willows – AYME

Charles Shepherd – MEA






Peter Spencer – AfME

Kathleen McCall - InvestinME




The minutes of the previous meeting were agreed and signed by the Chairman.


Ms DIANNE BURNS RGN; MSC; BSs(Hons) Nurse Practitioner


The Chairman welcomed Ms Burns to the meeting. She had been asked to address the Group following a survey of nurses which highlighted the lack of knowledge and, in some cases, empathy with PwME.


Ms Burns said that the Royal College of Nursing was deeply disturbed by the survey results and its impact upon patient respect. The matter had already been raised with the RCN by their former President, Dame Betty Kershaw, who is Professor of Nursing and Midwifery and Dean of the School of Medicine, University of Sheffield. A review of nurses’ pre-registration courses has already raised awareness. There was to be post-registration focus on management of long-term conditions which would include ME/CFS. At present, nurses do not have a full understanding of the illness.


The RCN was in a good position to lobby for improvements in patient care, with more than 400,000 members. They have a wide variety of mechanisms to communicate with members and a wide range of educational facilities and resources available including journals and websites, local meetings and a learning zone. They have representatives on Boards and Government committees. There were not enough nurses with awareness and understanding of ME/CFS. However, the RCN was committed to nurse education and to exploring all the options.


She told the Group of a fringe event to be held at the RCN Congress on 12 May 2009 which would be attended by MEA.


In response to questions:

Ms Burns acknowledged that the training and education of Practice Nurses could be a problem as they were often employed by GP’s to cover specific tasks which attracted remuneration from the DoH (e.g. respiratory disease, coronary heart disease and diabetes). It should be possible to raise their awareness of available services. She agreed that specialist nurses for ME/CFS were necessary.


The RCN have no role within CNCC at present.


The lack of nurses’ understanding of ME/ME patients’ needs was discussed. A major problem was the disbelief of the medical profession. Pre-registration training was very broad brush, but there were possibilities that post-registration courses would provide opportunities to change the lives of people with chronic medical conditions. Patients and support groups could help with training. It was suggested that Forward-ME could put together an education package and offer to provide speakers.


It was pointed out that the Nursing and Midwifery Council set the objectives that nurses needed to meet in order to qualify (NMC domains or competencies). They also validate all pre-registration courses. There is no requirement at the moment for any course to include a focus on ME/CFS. The Nursing and Midwifery Council would need to target the schools if they wanted ME/CFS to be included.


It was suggested that Ms Burns might work with Dr Kirstie Haywood at the School of Health and Social Studies, University of Warwick who is researching the appropriate use and evaluation of patient reported outcomes in a number of diseases including ME/CFS and has been involved with the Prime Project.


Ms Burns saw huge changes coming in nursing practice including prescribing and diagnosing need for admission to acute care. Attitudes were beginning to change with training. She offered to let the Chairman know of a possible speaker from the Nursing and Midwifery Council.


The Chairman thanked Ms Burns for her enlightening talk and hoped that the Group could keep in touch with her.





The Forward-ME website was up and working. The Chairman expressed thanks to Alan Rengger for his hard work.




The Chairman read a letter from the Chairman of the 25% ME Group in which he explained his reasons for withdrawing from Forward-ME. The Chairman had reluctantly accepted his withdrawal. She explained that it was not her intention to change the original philosophy of Forward-ME and hoped that the remaining members would continue to work together to achieve their purpose.




The Chairman explained that JR looked only at points of law. From reading the judgement it was clear that the Judge had found that NICE had acted within the law.


There was a question as to when the NICE guidelines on ME/CFS were to be reviewed. The Chairman agreed to table a written question to ascertain the date. (Written Answer 5 May 2009: “The National Institute for Health and Clinical Excellence will consider in August 2010 whether there is a need to review its clinical guideline on Chronic fatigue Syndrome/myalgic encephalomyelitis”.)


BRAME highlighted that one of the failings of the NICE Guidelines was that the scope was too narrow. MEA would be looking for factual inaccuracy as a means of getting change. Their reliance on CBT/GET was highlighted by the way in which the Association of British Insurers had interpreted the Guidelines as treating ME/CFS as a mental illness. MEA had met with them to try to get them to change their view. The Chairman had raised the matter in debate and had written to Lord Darzi, Minister for Health.


There was discussion on PCT’s adherence to Guidelines and comparison between the NICE Guidelines and the clinical guidance about to be issued by the Scottish Health Department which were based on the Canadian Guidelines and the MEA Purple Book.




AfME and MEA had attended meetings of the MRC expert group which had met twice under the Chairmanship of Professor Stephen Holgate. The first set out the terms of reference and membership. At the second meeting proposals for a two day conference and workshop to be held in November with 50 – 60 people to include a keynote speaker and short presentations from a range of experts in the biomedical areas of ME/CFS. Focus would be on young researchers with new ideas. These would be followed by discussion groups and plenary workshops with concentration on hard science.


They would also arrange for an academic review of all of the literature on ME/CFS. The object was to produce reliable, consistent and robust research findings.


MERGE had a number of ongoing research  projects with results imminent. It was difficult for the researchers, who were doing regular jobs as well as research, to find time to write up their results for publication, but this would be done. They were eager to be included with the MRC Expert Group conference.


MEA will shortly be visiting the Medical Research Council Brain Banks in Edinburgh as part of their information gathering process in relation to funding a UK based ME/CFS tissue and brain bank.




The latest Welfare Reform Bill was to have its Second Reading in the House of Lords on 29 April. The Chairman asked for any matters that the Group would like to have included to be forwarded to her. Some discussion followed.




There would be a very tight timetable. It was understood that questionnaires be distributed to MP’s and Peers to send to their constituents who have contacted them over the past 3 years. There were doubts that the timetable would be achievable.




The Worcestershire Group’s submission on CNCC’s was discussed. The participation of AfME and AYME in the forthcoming conference of the ME/CFS Clinical Network and Research Collaborative was called into question. The point was made by AYME that taking part in a conference did not automatically mean they agreed with all the views of all the participants and that it could often be beneficial to work on the inside and to gain the co-operation and understanding of those whose views were opposed by getting to know them and gaining their confidence.


Mentioning that the approach taken by AfME and AyME did not seem to be bearing fruit, Tymes Trust reminded the group of an observation made by Terry Waite: “it doesn’t mean that if you oppose what someone is doing that you’re necessarily against them in totality.”


It was agreed that the Chairman would invite a speaker from the CNCC to discuss the Group’s concerns at a later date.


The Group had received a suggestion from Derek Pheby that the UK might consider hosting an Executive Meeting of the IACFS/ME in December. It was agreed that more details were required before a decision was made and that December was not a good month for such a conference.


ReMEmber stated they had experienced difficulties when trying to take up patients’ concerns with the Department of Health. It was agreed that a Minister should be asked to attend a meeting of Forward-ME.




To be advised.


The meeting closed at 3.55pm.