Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS …
Recently, Professor Jonathan Edwards, with patients and carers as co-authors (including me), published a peer-reviewed editorial in the medical journal Fatigue: Biomedicine, Health & Behavior. The article became their most-viewed paper within a few days.
The editorial highlights some of the most promising biomedical research on ME/CFS, discusses possible broad models to understand the illness, and suggests practical steps to speed up progress.
Our paper is a direct call to the wider biomedical research community to actively target ME/CFS, but we hope that patients will also find the paper useful as a summary of current theories about what causes the illness, and some of the most promising research leads right now.… Read More
The funder of big, complex and expensive studies whose costs often run into the millions of dollars, the National Institutes of Health (NIH) presents a resource like no other. It’s never been easy to secure an NIH grant; for one thing, substantial data backing up one’s hypothesis is needed – which means researchers need to access substantial sums of money before they apply for the grant. The pre-grant stage is where non-profit organizations, which can provide seed money (about $100,000) for researchers to get the data they need to apply, shine.
Getting the preliminary data is just the beginning, though.
… Read More
Stating that there’s been a ‘major revolution in science… brought about by technological advances that have allowed us to look at data generated in the lab in a different way” Dr. Basil Aldadah kicked off the Systems Biology session. These studies tend to use sophisticated analytical techniques to look at very large amounts of data. They are expensive, resource intensive studies that some people think provide the best opportunity to understand complex disorders like chronic fatigue syndrome. Others wonder, ultimately, how accurate they are.
Gordon Broderick (Minute 204) – Regulatory Imbalance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Network Approach
There are ups and downs in every conference and Broderick’s presentation, which generated quite a bit of discussion throughout the conference, was definitely one of the ‘ups’.… Read More
Chronic Fatigue Syndrome and the Pathophysiology of EBV Infection – Dr. Glaser
Dr. Glaser started off by noting that studies have found a strong association between HHV6, EBV and chronic fatigue syndrome (ME/CFS) and then, perhaps in reference to all the attention given to XMRV over the past year and a half, stated that any other viral discoveries (guess who?) must account for the fact that these viruses have been shown to be present in ME/CFS.
Dr. Mikovits, of course, has repeatedly referred to pathogenic ‘co-factors’, e.g., viruses like EBV and HHV6 that complete the picture of an immune-depleting retrovirus that, in an HIV-like fashion, allows other pathogens to proliferate.… Read More
The State of the Knowledge Workshop is here and it’s a good one. A hearty congratulations to Pat Fero, Mary Schweitzer, Ken Friedman, Dr. Jason, Dr. Klimas, Dr. Vernon and Dennis Mangan for what they’ve produced. The last NIH Workshop/Conference of this sort was the Neuroimmune Conference of eight years ago and was filled with NIH researchers who had little or no experience with CFS. This conference on the other hand is packed with ME/CFS researchers.
After overviews by Dr. Komaroff (who else?) and Dr. Jason (who else?) on characterizing and defining ME/CFS the Workshop jumps into four 20 minute presentations on EBV (Glaser), enteroviruses (Chia) and XMRV (Mikovits/Coffin). … Read More
That’s right – in the midst of the greatest economic contraction since the depression the NIH has, all of sudden, found itself in the greatest single expansion in its history. How and why demonstrates how much influence one Senator can have. Desperate to get Arlen Spectors vote on the stimulus package, the Obama administion acceded to a 30% increase in the NIH’s already enormous budget. This year the NIH will have to find a way to spend 10 billion dollars more than it did last.… Read More
Dr. Hanna at the NIH has repeatedly said that given the tight budgetary times there’s just no money for ME/CFS. A look at NIH funding across the past few years suggests, however, there’s more to the issue than she suggests. Underneath the seemingly placid surface of a stable budget a fierce fight goes on every year with some diseases winning big and some losing big; a tight budget does not mean that a disease is doomed to a stagnant budget.… Read More
We know the ME/CFS research program at the CDC is in big trouble but what about its cousin at the NIH? Three years ago the CFIDS Association of America was praising the CDC’s chronic fatigue syndrome program and slamming – in a federal document – the horrible performance of the NIH’s ME/CFS program. The only thing that’s happened to change that viewpoint is the implosion of the CDC’s program; things are still as bad as ever over at the NIH.… Read More