Maria gets 300,000 krone from the Kavli Foundation
(Photo: Skjalg Ekeland/BA)
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, for now, restored her to health.
As she explained in her article in March, Maria doesn’t expect to stay well. She was a patient in Drs Fluge and Mella’s ME/CFS pilot study on Rituximab and received her last infusion of the drug earlier that month.… Read More
by Simon McGrath
Prof Stephen Holgate
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 and ME”. The launch featured some eye-catching provisional results that got good media coverage, particularly the study from Newcastle showing differences in lab-cultured muscle from CFS patients versus healthy controls. And an fMRI study found that patients had to use more brain regions to accomplish the same mental tasks as controls, confirming earlier work in this field.… Read More
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 are more perceived than real.
Clearing away the smoke
Such inconsistent findings are almost the norm for CFS research, with similarly mixed results in many areas including biomarkers. How do you make sense of it all?
Susan Cockshell: She does all this part-time?
… Read More
Joel (snowathlete) reviews the research on ME/CFS and Parvovirus B19.
Parvovirus B19. Image courtesy of Dr Jean-Yves Sgro, Virusworld [*]
Parvovirus B19 (B19) is a small virus with an icosahedral shell (a polyhedron having 20 faces)  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 of the parvovirus which infects dogs and often causes fatality, but B19 is not the same virus, or even in the same genus, so B19 is not a zoonotic. In humans, B19 is often caught in infancy and causes “slapped cheek”, also referred to as “fifth disease”, and is considered to be mild and self-limiting.… Read More
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 became invisible again…Except, it didn’t…
IrsiCaixa were still interested. Dr Blanco and his colleagues had taken a look at ME/CFS in 2010 and spotted a bunch of problems in the immune system. These guys really know their stuff when it comes to immunology and they knew that they were on to something.… Read More
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 in the world to crowdfund a clinical trial?
And can we engage both sides of the Atlantic to make it happen?
In 2012, a study at Haukeland Hospital on the use of the immunosuppressive medication Rituximab against ME attracted international attention.… Read More
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.
by Tina Carvalho, University of Hawaii at Manoa
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 pathogen transmitted via a vector, usually a tick. There is evidence that other arthropods such as fleas, biting flies, mites and spiders also carry it, but so far there is only limited – mainly anecdotal – evidence of transmission to humans by non-tick arthropods.… Read More
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 the main theme of her presentation: her jaw-dropping work in other illnesses. It took me a few attempts to fully grasp some of the more complex material, but I was left in a state of stunned admiration. And that doesn’t happen very often, as anyone who’s seen my posts will know.… Read More
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 with XMRV, Professor Lipkin made clear his belief that ME/CFS was a serious disease that had not received the serious attention it deserved. Even more important – given his stellar record as a scientist – was his commitment to playing a serious role in trying to solve the illness.… Read More