We will use this area to highlight particularly relevant research results, and those this Support Group has supported that may not be reported nationally. We will also provide links to particular research sites, and this will develop over time, but we see no need to repeat here what is already available through reliable sources.
In our opinion, one of the best available summaries of research projects, and analysis of the results, is to be found on the ME Association (MEA) website where the content is edited by Dr Charles Shepherd. The MEA have had a research fund (the Ramsay Research Fund) for some time and concentrate on funding biomedical research. They are currently supporting the UK ME Biobank and related research.
(Incidentally they have a good introduction to CFS/ME: www.meresearch.org.uk/what-is-me)
There is a great deal of biomedical research now going on, much of which has been funded at some point by MERUK. They have an online magazine: http://www.meresearch.org.uk/news/breakthrough-spring-2017/
Action for M.E. has also recently become involved in funding a small amount of research. It also provides the secretariat for the UK Research Collaborative:
The fourth UK organisation involved in research is Invest in ME Research. They have been running successful annual research conferences in London for some time, and more recently started raising funding for a research centre of excellence in Norwich.
There is also a lot happening elsewhere, especially in the US, Canada & Australia – MERUK usually gives a summary in its Breakthrough magazine. “Breakthrough” equates to hope!!
Petition to Government
Recently an online petition was started – “Debate in Parliament the absence of an effective policy for the treatment of M.E”. The Government has now responded:
The Government accepts the World Health Organisation’s classification of CFS/ME as a neurological condition of unknown origin.
Many potential causes for CFS/ME – including neurological, endocrine, immunological, genetic, psychiatric and infectious – have been investigated, but the variety of symptoms and the range of their severity cannot be fully explained. As the symptoms of CFS/ME resemble those of other forms of debilitating illness and there is no test with which to make an accurate diagnosis, it is not always easy to diagnose single cases of the condition. Diagnosis relies on clinical observation of symptoms by healthcare professionals.
For those affected, it is important that they receive the right diagnosis and that the treatment and support they receive are tailored to their symptoms, needs and circumstances. NHS clinical commissioning groups are responsible for ensuring that local people affected by CFS/ME are able to access appropriate care. To support local services in the diagnosis, treatment and support of patients with CFS/ME, in 2007 the National Institute for Health and Care Excellence (NICE) published a clinical guideline on the management of CFS/ME in adults and children, which sets out best practice on the care, treatment and support of patients with CFS/ME. NICE is the independent expert body responsible for developing robust, evidence based guidance for the NHS to design services that are in line with the best available evidence.
The NICE guideline on CFS/ME recommends treatments, such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET) approaches, that have the clearest research evidence of benefit. However, it does not detract from the right of patients to be involved in decisions about their treatment. The guideline recognises there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want. Instead, it emphasises a collaborative relationship between clinician and patient, that treatment and care should take into account personal needs and preferences, and that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme. It is also important to clarify that the effectiveness of CBT as a treatment for CFS/ME does not make assumptions about the nature of the illness. CBT is used to help and support people through physical illnesses and is used widely to manage many medical conditions such as arthritis, heart disease and chronic pain.
NICE last reviewed the guidance with its stakeholders, including CFS/ME charities, in 2013. The review found no update was required and at that time no major ongoing studies or research were identified as due to be published in the next three to five years. The full guideline may be viewed on the NICE website at the following link: www.nice.org.uk/guidance/cg53
Recently, NICE has been made aware of three US reports that have indicated there are likely to be changes in diagnostic criteria that could have an impact on the CFS/ME guideline recommendations and decided to start a check of whether the guideline needs updating. NICE has also been made aware of new information about the 2011 PACE trial, which highlighted CBT and GET as safe and effective treatment options for people who have mild or moderate forms of CFS/ME. At the time, NICE concluded that the results of the trial supported its existing guidance, but it will now also consider that new information as part of its check of the guidance. NICE plans to set out its decision regarding an update shortly.
Department of Health
Children with CFS/ME
A “File on 4” programme on BBC Radio 4 looked at the difficult interactions between families and Social Services when a child misses a great deal of school. Here is the MP3 file containing this broadcast: