Dr. Paul Cheney, MD, PhD, a world expert on ME/CFS, comments on the notion that patients can 'exercise their way to health with this illness.' As of February 18, 2011, the comments became hugely relevant, and central to an international furor among patients and advocates...
Read more...The PACE Trials have recently been published and demonstrate clearly what is wrong with the present way that vested interests have manipulated the establishment view about myalgic encephalomyelitis (ME/CFS) and forced tens of thousands of patients and their families to live in a continual state where no proper research is sanctioned, good science is denied and where pointless and biased studies are funded by a system which denies human rights...
Read more..."Results are at serious variance to patient evidence on both cognitive therapy and exercise therapy" - This is the response from The ME Association to the results of the PACE trial, which were published in The Lancet on Friday 18 February 2011...
Read more...The experience of a Shropshire mother and son should be enough to convince any doubters that ME is a very real illness...
Read more...The Medical Research Council (MRC) is committing £1.5m for research into the causes of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). The aim is to promote new and innovative partnerships between researchers already working in the CFS/ME field and those in associated areas, such as pain and fatigue. The aim is also to encourage and support more high-quality CFS/ME research proposals...
Read more...Anne Diamond on BBC Radio Berkshire discussing M.E. with Dr Charles Shepherd, Prof Leslie Findley and Phil Parker....
Read more... The Radio broadcast can alternatively be heard directly on YouTube BBC Radio Berkshire Broadcast 11th November 2010.Patients with Myalgic Encephalomyelitis, also known as ME, Myalgic Encephalopathy, Post-viral fatigue syndrome, and Chronic Fatigue Syndrome (CFS), will be prevented from donating blood from 1st November under new safety rules...
Read more...A team from the University of Dundee found that children with ME (myalgic encephalomyelitis) - also known as chronic fatigue syndrome - were undergoing a number of physical changes, including white blood cells dying at a faster rate than normal. They say these changes suggest that people with ME may be fighting a persistent viral infection...
Read more... Jane Colby, of The Young ME Sufferers Trust (Tymes Trust) can be heard on the BBC World Service (Chapter 7).The Department of Health has decided to ban blood donation permanently from all prospective donors in the UK who report they have had ME/CFS from 1 November this year. The decision was announced in an email sent to The ME Association today by the Department's Director of Health Protection...
Read more...Researchers said they had identified a family of retroviruses in patients with chronic fatigue syndrome, opening up a potentially promising new avenue of treatment for a debilitating disease that afflicts as many as four million Americans and 17 million people world-wide...
Read more...The full study paper released by the the FDA/NIH by Lo/Alter et al...
Read more...Two Reno scientists, who last year discovered a new infectious human retrovirus they linked to Chronic Fatigue Syndrome, said Monday that their findings have been replicated and confirmed by the U.S. Food and Drug Administration...
Read more...At the 5th Invest in ME International ME/CFS Conference in London in May Invest in ME announced that we had entered into discussions with the University of East Anglia to instigate a research facility for ME...
Read more...Between October 2010 and March 2014 existing incapacity benefits claimants (those on incapacity benefit, severe disablement allowance and income support on disability grounds) will be reassessed under the employment and support allowance (ESA) Work Capability Assessment (WCA) instead of the Personal Capability Assessment...
Read more...There seems little doubt that the new research into XMRV by the NIH/FDA will eventually be published, but the delay in publication raises some serious issues...
Read more...Researchers at the National Institutes of Health and the Food and Drug Administration, citing a need to re-evaluate their data, have delayed publication of a new study believed to provide evidence of a link between chronic fatigue syndrome and a little-known retrovirus...
Read more...A study that supports the controversial link between chronic fatigue syndrome and a new type of virus has been blocked from being published in a leading scientific journal even though it had been accepted for publication by its editors...
Read more...Two groups of researchers studying a potential link between chronic-fatigue syndrome and a virus called XMRV have reached contradictory conclusions, according to people familiar with the findings...
Read more...The role of the new British Association for CFS/ME (BACME) in the training of doctors and healthcare professionals in ME should be examined by the All Party Parliamentary Group on ME (APPG) after the group reforms - preferably before the next BACME training and education conference due to be held in October 2010...
Read more...A report that a respected NIH expert supported an association between the XMRV virus and chronic fatigue syndrome is causing a buzz among CFS patient activists, researchers and clinicians...
Read more...This is a personal summary of the 2010 Invest in ME conference that has been prepared for ME Association members. A further summary, with additional background information, will appear in the July issue of ME Essential magazine...
Read more...Myalgic Encephalomyelitis and Blood Donations...
Read more...A 55 minute video presentation given in Massachussets by Anthony Komaroff M.D. (Harvard Medical School).
View...Dr Sarah Myhill and the General Medical Council - Opinion Mr John R Macdonald, Queen's Counsellor, New Square Chambers, Lincoln's Inn London...
Read more... A letter written to the GMC from the Shropshire ME Group Secretary may be downloaded here.On Thursday April 8th 2010 at 10am I was ordered by the GMC to attend a Hearing in Manchester on Monday April 12th with a view to withdrawing my licence to practice...
Read more...With no reply from the Secretary of State for Health to our letter of 14th March 2010 ... Invest in ME have followed up this letter with another one...
Read more...An AIDS-like virus that has been linked to chronic fatigue syndrome is causing Canadian blood officials to ban anyone who has suffered from the ailment from making donations...
Read more...XMRV Virus gets attention of health officials, but it's unclear if there is any danger...
Read more...Thousands of seriously ill and disabled people who are unable to work are being wrongly denied benefits, a report by Citizens Advice has claimed...
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Recently several establishment organisations, media outlets and some individuals have been casting doubt over the recent research by the Whittemore-Peterson Institute/National cancer Institute/Cleveland Clinic.
Dr Mary Schweitzer has provided this commentary on the XMRV research...
Recently Mrs Ann Keen, secretary of state for Health, commented that people with Myalgic Encephalomyelitis were not able to donate blood. Invest in ME have written the following letter to the Secretary of State for Health, Mr Andy Burnham...
Read more...A third European XMRV study, which has attempted to find the human retrovirus XMRV in people with ME/CFS, has failed to do so...
Read more... also in...A small Dutch study found zero evidence of XMRV in chronic fatigue syndrome patients. In some ways it was the weakest study of the bunch...
Read more...Version 4 of the MEA position statement on XMRV clarifies some of the points and queries raised in the previous three summaries. Version 4 also updates the situation on XMRV research in the UK, testing for XMRV, and refers to our correspondence with the Chief Medical Officer regarding blood supplies and blood donation...
Read more...The European ME Alliance is a collaboration of ME organisations within Europe who have the common aim of promoting biomedical research into Myalgic Encephalomyelitis (known as ME or ME/CFS) and increasing awareness of this debilitating neurological illness...
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