by Sasha I call Dr Maria Gjerpe’s 90-day campaign to raise money for a crucial confirmatory Rituximab trial a ‘fundraising marathon’ but that hardly covers it. It’s more like a triathlon a day for three months. Maria, previously bedridden for years with ME/CFS, has been working 12-hour days non-stop to fund the Phase III trial on the drug that has,
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Chronic fatigue syndrome (ME/CFS) Research
Launch of inclusive UK CFS/ME Research Collaborative
by Simon McGrath Last Monday, 22 April, saw the launch of the new UK Chronic Fatigue Syndrome/Myalgic Encephalitis Research Collaborative (CMRC). Set up by Stephen Holgate, MRC professor of immunology, and backed by the UK’s main research funders (MRC, Wellcome Trust and NIHR) it aims “to create a step change in the amount and quality of research into chronic fatigue
ContinueBrain fog: The Research
Simon McGrath on some important recent research into cognitive deficits in ME/CFS. Brain fog is a major issue for ME/CFS patients, with 80-95% reporting memory or concentration problems. And while researchers have often found evidence of ‘cognitive deficits’ in laboratory testing, a surprising number of studies have failed to find deficits, leaving some to even speculate that patients’ cognitive problems
ContinueParvovirus B19 in an Icosahedral Nutshell
Joel (snowathlete) reviews the research on ME/CFS and Parvovirus B19. Parvovirus B19 (B19) is a small virus with an icosahedral shell (a polyhedron having 20 faces) [1] and has been linked with the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). B19 was discovered fortuitously in 1975. There are several other parvoviruses, but most don’t infect humans. You may have heard
ContinueSpanish HIV Experts Give Aid to ME/CFS
Joel (Snowathlete) talks with Dr Blanco, from IrsiCaixa, about the Spanish AIDS Research Institute‘s latest research on ME/CFS Back in 2009 when XMRV hit the headlines a number of groups around the world took an interest in ME/CFS for the first time. One of these groups was the AIDS Research Institute IrsiCaixa, in Spain. Then XMRV tripped itself up and ME/CFS
ContinueMEandYou: 90 Days to Raise $1.2 Million for Rituximab Trial!
Dr. Maria Gjerpe, an ME patient for 30 years, explains how and why MEandYou are going to crowdfund a Rituximab study. Within 90 days we are going to raise 7 million Norwegian krone ($1.2 million) to fund a study on 140 ME/CFS patients at Haukeland Hospital in Bergen, Norway. Will we – the patients, relatives, friends – be the first
ContinueBorrelia – In the Lymelight
Joel (Snowathlete) continues his series on zoonotic pathogens with a thorough examination of Borellia and Lyme disease – and their possible relevance for ME/CFS patients. Borrelia is the bacterium that causes borreliosis. It is a microscopic spiral-shaped parasite. There are many different species of Borrelia, some of which cause Lyme borreliosis, otherwise known as Lyme disease. Borrelia is a zoonotic
ContinueMady Hornig: How do you solve a problem like CFS?
Simon McGrath explains how Mady Hornig is applying tools used to understand other complex illnesses in an effort to unlock the secrets of ME/CFS. In a recent article I looked at the huge studies Professor Mady Hornig has underway looking for pathogens or signs of immune abnormalities in ME/CFS. While these are immensely impressive, I thought they were eclipsed by
ContinueLipkin and Hornig go hunting for ME/CFS pathogens
by Simon McGrath For me, the star attraction of Nancy Klimas’ recent CFS/GWI conference was always going to be Professor Mady Hornig and her talk. Hornig might not be well known by ME/CFS patients – yet – but her boss is: Ian Lipkin, who so skillfully handled the XMRV ‘dediscovery’ study (which she worked on too). Despite disproving a link
ContinueImportant Discovery Exposes Autoimmune Nature of ME/CFS – HERVs Implicated
by Joel (Snowathlete) Some dates you remember forever. Yesterday, on Wednesday 20th February 2013, a paper was published that may represent a major breakthrough in understanding the underlying mechanisms and cause of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The paper, from long-time ME/CFS researchers Dr Kenny De Meirleir, Vincent Lombardi and other colleagues in association with the Whittemore Peterson Institute, reports
ContinueZoonoses – a load of cock-and-bull?
by Joel (Snowathlete) For millennia man has predicted the end of the world: an asteroid strike, a super-volcano, global warming… but in recent years, we’ve been told that our greatest threat is the microbe. In 2003 it was Bird flu, then in 2009 it was Swine flu, but as we’re still here, perhaps it’s a cock-and-bull story, rather than a
ContinueNew study hints at biological roots of mental and physical problems in ME/CFS
by Simon McGrath A new study, from Julia Newton’s group in Newcastle, UK, has found evidence that reduced blood flow to the brain is associated with muscle abnormalities in CFS patients. Earlier work by the same group had found that with many CFS patients, muscles don’t regulate acid levels properly after exercise. Another study, by Ben Natelson, had shown reduced
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