HRH The Duke of Kent – patron of The ME Association – is at the Wellcome Collection in central London today to attend the launch of the UK ME/CFS Research Collaborative.
The aim of the Collaborative is to promote the highest quality of basic and applied evidenced-based and peer reviewed research into ME/CFS, and the launch will bring together a range of national agencies, ME/CFS charities, and over 70 working researchers from across the UK.
The final programme is given below, and our trustees Neil Riley, Dr Charles Shepherd and Nikki Strong will be there representing The ME Association.
Morning
Chair: Prof Stephen Holgate
12.00-12.10: The importance of research for patients with CFS/ME (Annette Brooke MP, Chair All Parliamentary Group on ME)
12.10-12.20: Medical Research Council Initiatives in CFS/ME (Dr Joe
McNamara, MRC Head Office, London)
12.20-12.30: National Institute for Health Research support for CFS/ME
Research (Dr James Fenton, NIHR Trainees Coordinating Centre, Leeds)
12.30- 12.40: The Role of Medical Charities in CFS/ME research (Sue
Waddle, ME Research UK; on behalf of all 5 Research-supportive
Charities)
12.40-12-50: Why a UK Collaborative is needed in CFS/ME (Prof Stephen
Holgate, Chair CMRC, MRC Professor of Immunopharmacology, University
of Southampton)
12.50-13.00: The UKCMRC charter (Dr Esther Crawley, Deputy Chair CMRC,
Centre for Child and Adolescent Health, University of Bristol)
13.00-14.30: Lunch and poster viewing
Afternoon
Chair: Dr Esther Crawley
14.30-14.40: My research into CFS/ME (Simon Collin, University of Bristol)
14.40-14.50: My research into CFS/ME (Zoe Gotts, University of Northumbria)
14.50- 15.05: Autonomic dysfunction in CFS (Prof Julia Newton,
Newcastle University)
15.05-15.20: What can be learnt from fatigue in other diseases (Dr Wan
Ng, Newcastle University)
15.20-15.35: Role of interferons in fatigue (Dr Carmine Pariante,
King’s College London)
15.35-15.50: Muscle energy abnormalities in CFS/ME (Dr Nicola Wells,
University of Liverpool)
15.50-16.05: Salivary cortisol in adolescents with chronic fatigue
syndrome: comparison with healthy controls and change after treatment
(Dr Katharine Rimes, King’s College, London)
16.05 16.35: Question and Answers (Panel of speakers)
16.35-16.45: What next? (Prof Stephen Holgate and Dr Esther Crawley)
Meeting Close
As long as the “evidence” used in the so-called “Evidence-based medicine” is based on scientific knowledge, rather than untestable Freudian psychiatric theories, and the peers used for reviewing are also properly trained research scientists, not more medics and psychiartists, this is to be welcomed.
The published and accepted peer-reviewed “evidence” cooked up so far says that CBT and GET are the best “treatments” – while my own personal evidence proves this is not the case.
The initiative looks very promising. Thanks to the ME Association for all its immense efforts towards keeping the focus on bio-medical research.
Disappointing is the inclusion of proponents of GAT, GET, & CBT, as “treatments” for children & young people, and when these do not ‘work’ the labelling of psychological factors as causative; similarly the research is in these areas.
Looking forward to reading/hearing any feedback from representatives from ME Association and whether the ‘Way Forward?’ was indeed a biomedical research focus.
This all sounds great until you read the last part of the press release which isn’t shown here – usual rubbish about illness beliefs etc http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/CMRC%20launch%20media%20statement.pdf
Would love to see the updates that were given today on the MRC CFS biomedical studies.
I agree pinkarmadillo, only hope press didn’t read into ‘Further information’ section and down to last paragraph!, which is below.
The rest of the press release read positively, as did Times newspaper today.
This para. seemed out of synch with the rest, who wrote it?
“No certain cause has been established, which perhaps reflects its heterogeneous nature, but established immediate causes include certain infections, such as Epstein-Barr virus (EBV). (10-13 per cent of patients with a primary EBV infection develop CFS six months after onset. Predisposing factors include female sex, functional somatic syndromes, and prior mood disorders. For treatment purposes, important maintaining factors include comorbid mood disorders, beliefs about causation, and either pervasive inactivity or swinging from inactivity to over-activity (boom and bust pattern of behaviour).”
Any feedback from those who attended greatly appreciated.
It’s late and I’m only just back from London – because we have also had a full day meeting on the ME Biobank today.
I have provided some comments/thoughts on the UK RC launch on our MEA Facebook page tonight:
http://www.facebook.com/pages/ME-Association/171411469583186
As I say on MEAF the UK RC is a big tent covering a wide range of views on cause, definition, epidemiology and management. We believe it is far better to be discussing and debating these issues inside the tent – as already happened during the discussion session on Monday afternoon, rather than outside the tent.
I am rapidly becoming excluded from society and information because I will not join “facebook”. 🙁