Journal of IiMER CBT/GET programmes were then re-diagnosed and given labels such as pervasive refusal syndrome and parents/carers accused of Munchausen Syndrome by Proxy. The PACE trial was mentioned and Dr Radford had not read PACE. So Countess of Mar described the well-known shortcomings of the PACE trial including the Information Commissioner’s Office being involved leading to a court case to get raw data released and reviewed according to the original protocol and the damage it has caused to the worldwide patient community. Professor Edwards explained the reasons why the PACE trial and CBT/GET studies were poor science and the system is failing as it allows authors of these papers take on roles as reviewers of the same papers. The Cochrane review was an example of this. Dr Gibson described the annual IiMER Colloquium/Conference and how the science is getting interesting. There seems to be lack of duty for biomedical research into ME, neglect in taking an all- around approach and ME is not getting its fair share. Dualism was a waste of time and research should open up and the government has failed to take it up. Fane Mensah described the situation for a young researcher. He said there needs to be support for young researchers. Students who are thinking about their career choices need to know there is a future in this exciting and complex field. He described how the patients he sees as part of the research funded by Invest in ME Research are so grateful that someone is taking them seriously and listens to them. The charity asked Dr Radford how the CMO made decisions when taking up issues such as antibiotic resistance, Ebola, Zika virus etc.? Dr Radford said it was because they were major worldwide issues. www.investinme.org The charity said that ME is a major worldwide issue - yet no one knows numbers affected (only rough estimates) and the diagnosis is inaccurate and variable. Sally Davies should at least make a brief visit to the conference or send a representative to learn about the latest developments. Dr Clare Gerada as the chair of the Royal College of GPs gave a talk at the IIMEC8 conference in 2013 and admitted GPs knew very little of ME. Professor Edwards said ME was a bigger problem than rheumatoid arthritis. Epidemiology in general was lacking and current service provision was poor. The direction of ME research has not been founded in good science and the Norwegian phase III rituximab trial results will guide the future. The psychiatrists do not understand the problem and that is a BIG problem. The PACE trial is a text book case how not to do a trial. In Practical terms: we need physician led services (very few of which currently exist) which provide help and continued surveillance. ME is an identifiable problem due to the characteristic of post exertional malaise (PEM). Surveillance is needed as other diseases such as lymphoma can be hidden in that cohort. Major change has happened in USA, but not in the UK. Dr Radford asked what we wanted to ask the CMO. The following points were stated - Genuinely appreciate the size of the ME problem Maintain consultant led services Appreciate new research Appreciate current services have been hijacked by bogus science and patients find that dispiriting and dangerous NICE was briefly discussed and a decision whether the guideline will be reviewed should be made by the summer of 2017. Dr Radford said that it is important there is new Page 38 of 82
39 Publizr Home