July was a big month for scientific research in ME! Many of the most well-known researchers and clinicians had papers this month including Klimas, Lipkin, Hornig, Levin, Peterson, Montoya, Julie Newton, Broderick, and Marshall-Gradisnik. There were studies in epigenetics, NK cell function, the HPA axis, robots for schoolchildren with ME, and a few interesting critiques and editorials. Read on for our research roundup for July 2018!
Insights into myalgic encephalomyelitis/ chronic fatigue syndrome phenotypes through comprehensive metabolomics is a paper with contributions from multiple well-known scientists and clinicians in ME, including Klimas, Lipkin, Hornig, Levin, Peterson, Montoya, and a host of others. Metabolomics is the study of the chemicals produced in metabolic processes. The team found differences between not only patients and controls, but patients with and without IBS as a comorbidity. Unfortunately they did use “Fukuda and/or CCC” to identify patients; and the number of metabolites measured is high in proportion to the number of patients investigated.
Dr Gordon Broderick’s team released High-fidelity discrete modeling of the HPA axis: a study of regulatory plasticity in biology, a study that discussed ME as it relates to HPA axis dysfunction. Broderick’s group builds on their work from A Role for Homeostatic Drive in the Perpetuation of Complex Chronic Illness: Gulf War Illness and Chronic Fatigue Syndrome (2014), where they presented patterns of hormones seen in ME by gender. This new paper discusses a “bi-stable, oscillatory” pattern for chronic, neuroendocrine disease. A stressor can cause a ‘collapse’ into one of several alternate homeostatic patterns, with different metabolic rules. Fair warning: systems biology involves heaps of mathematical terminology: you may need galoshes to wade through.
Identification of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome-associated DNA methylation patterns by Nancy Klimas’s team showed that methylation, a process through which genes are ‘switched on’ or ‘switched off’ by environmental factors, was affected in ME. Generally, genes in patients were less methylated – or hypomethylated – in comparison to those of healthy controls. This isn’t the first time methylation has been examined in ME; methylation-based protocols have been a mainstay of patient self-help for a decade or more.
Reduced glycolytic reserve in isolated natural killer cells from myalgic encephalomyelitis/ chronic fatigue syndrome patients: A preliminary investigation from Marshall-Gradisnik’s team in Australia has found a depleted glycolytic reserve in the natural killer cells of ME patients, meaning that NK cells may respond poorly in cases of energetic demand.
Julie Newton’s team released Intracranial compliance is associated with symptoms of orthostatic intolerance in chronic fatigue syndrome. This paper argues that ICC – which determines the ability of the brain to adjust to changes in fluid volume without huge increases in pressure – is directly related to orthostatic intolerance in people with ME, a symptom of autonomic dysfunction.
Dr David Systrom, a clinician who studies ME, was interviewed by journalist and longtime advocate Llewellyn King. The video can be found here.
Systrom states that he has found evidence of small-fiber polyneuropathy (SFPN) in 40-50% of ME patients; and that pyridostigmine, a treatment for SFPN, may be an effective treatment for patients.
Børsting and Culén of Norway wrote a paper on the use of technology for young people with ME called Youth with ME/CFS: Untangling Complexities in Technology Design to Support Everyday Living. You may remember these little robots from the #MillionsMissing protests so that severe patients could watch from home. Check out a video of #MillionsMissing Deutschland that shows the robots in action.
In The putative glymphatic signature of chronic fatigue syndrome: A new view on the disease pathogenesis and therapy, the authors argue that glymphatic dysfunction causes toxic build up within the central nervous system, and may be responsible for some cases of ME.
From Lenny Jason’s team comes Latent class analysis of a heterogeneous international sample of patients with myalgic encephalomyelitis/chronic fatigue syndrome, which posits six different subsets of patients by symptom-cluster.
Checking our blind spots: current status of research evidence summaries in ME/CFS is an editorial written by some familiar members of the Workwell team. At its heart, it’s a refutation of the Cochrane review and a reassertion of dangers of GET.
From Frank Twisk and Lou Corsius comes Cognitive–behavioural therapy for chronic fatigue syndrome: neither efficacious nor safe. They critique a study by Janse et al. in which online CBT is offered to people with ME and found to be effective. Once again, we have a group of researchers who’ve dealt with the inability to find objective measures by not measuring them (despite having done so previously and having found no change), along with a host of other methodological issues.
Manuel Ruiz, a student with ME, wrote an extensive paper on the connection between ME and Epstein-Barr virus, a herpesvirus known to be associated with onset, that can be found in this thread.
And that’s our research roundup for July 2018. Keep reading and keep researching, everyone!