5 October 2011
A summary of recent M.E. related stories in the news. Headlines appearing in the media as dated.
Alleged manipulation of 2009 XMRV paper
American journal Science is investigating alleged manipulation of data in its 2009 paper linking XMRV to CFS. The paper included a figure purporting to depict lab test results from seven blood samples, including two from CFS patients and five from healthy controls. But Dr Judy Mikovits, author of the paper, apparently presented the same figure – carrying different labels and supporting a different point – in her talk at IACFS/M.E. Conference in Ottawa, 23 September.
Chicago Tribune, online
Dr Mikovits let go from WPI
Dr Judy Mikovits, who led the US team that found a possible link between the retrovirus XMRV and CFS, has been fired from her job as director of research at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nevada.
Wall Street Journal, online
Tracking the XMRV story
Continuing developments in the story concerning Dr Judy Mikovits, the Whittemore Peterson Institute and the 2009 paper in Science on the link between CFS and XMRV are tracked by the Retraction Watch blog.
Retraction Watch, online
Link between CFS and Giarda infection?
Following news a partial retraction from Science of the 2009 XMRV study, the idea that the trigger for the illness is an infection is ”not going away.” A Norwegian study just published in Gut looked a Giardia outbreak that occurred when one of the Bergan’s central water supplies was contaminated. Researchers followed 817 people who had laboratory-confirmed Giardia infection during the outbreak and 1,128 matched controls who were not affected. They report that three years after the outbreak, 46.1% of the people who were exposed to Giardia reported symptoms of CFS compared with 12% of controls.
CAM Magazine, p 3 and 17
XMRV is not a contaminant, says Mikovits
The results of the recent study by the Blood XMRV Scientific Research Group in the US show, along with a partial retraction of the 2009 Science paper describing identification of the retrovirus in patients with CFS, that detection of XMRV in patient samples is a result of contamination. However, the story may not be over. Dr Judy Mikovits told Science: "Anyone who says this is a lab contaminant has drawn the wrong conclusion and has done a disservice to the public." She remains convinced that a gammaretrovirus is at large in at least 20% or 30% of people with CFS.
CAM Magazine, p 16
M.E. costs UK £102m in lost earnings
CFS/M.E. is responsible for more than £102 million a year in lost earnings to the UK economy, according to new research by Dr Esther Crawley and a team at Bristol University. Funded by the National Institute for Health Research and UK charity Action for M.E. charity, the study (published in the BMC Health Services Research) examined data from 2,170 patients attending specialist services to estimate earnings lost as a consequence of the illness. Sir Peter Spencer, Action for M.E., who welcomed these research findings, commented: "The key message for the Government and for the Department of Health is that the financial costs of failing to address this illness properly are much greater than the money required to set up proper NHS specialist services in all areas and to fund much needed scientific research. In addition to the moral imperative, there is clearly a powerful economic argument for addressing the needs of this greatly neglected patient group."
CAM Magazine, p 17
Research into orthostatic intolerance
Orthostatic intolerance, a set of characteristic symptoms while standing or sitting upright, has ben associated with adults and children who have CFS. However, the full extent and significance of the link is a subject for more research and a study is currently being funded by the charity CFIDS Association of America.
CAM Magazine, p 18 to 20
New international criteria for M.E.
New criteria for M.E. been published in the journal BMC Medicine by an international panel of 26 researchers, doctors and academics. The criteria proposes that post-exertional neuroimmnune exhaustion plus seven symptoms from three other subdivided symptom clusters must be present when making a diagnosis of M.E.
CAM Magazine, p 20
Atos linked with 2012 Paralympics
Disability campaigners are threatening a boycott of the 2012 Paralympic Games because of links between the International Paralympic Committee and Atos, the private company contracted by the Governement to carry out Work Capability Assessments.
Channel 4, online
GPs outraged by proposed GMC guidance
Proposed changes to the General Medical Council’s core ethical guidance, drafted with input from the Department of Work and Pensions, will require GPs to encourage patients with long-term conditions to stay in or return to employment. The move has outraged GPs and GMC Council members who have demanded clarification on the change. Officials have responded by saying that the proposal is likely to be reworded ahead of a public consultation later this month, substituting ‘employment' with ‘meaningful activity.’
We must increase support for basic research
Patients have suffered because of doctors’ failure to fully understand the M.E./CFS, say US physicians Dr Jay A Levy and Dr Daniel Peterson. They go onto discuss the difficulty in attracting researchers to study the condition and the likelihood that the cause of M.E./CFS lies in the immune system. “Until we determine the causes and work out the best treatments for this debilitating condition, people with CFS will continue to suffer,” they add. “In the meantime, we must increase support for basic research and for finding the best, evidence-based approaches for treating the disease.”
Medical Express, online
Sussex M.E./CFS Society medical meeting
In a letter to the editor, David Butler, Sussex M.E./CFS Society, refers to a recent story about the economic cost of M.E. to the UK. He says nearly 90 people recently joined Simon Kirby MP at a Sussex M.E./CFS Society medical meeting at Hove Town Hall where speakers discussed research into the illness.
Kemptown Rag, p 5
New dance class for wheelchair users
A new dance class called Wheels in motion, held at St Mary’s Community Centre, Pontefract, offers wheelchair users, the able-bodied and people with learning disabilities the chance to learn Latin, ballroom and modern dancing. Stephanie Knagg, who was diagnosed with M.E. in 2009, says the class will give her positive memories of being in a wheelchair,
Pontefract & Castleford Express, p 8
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