My aim with this is to draw together brief details of all the ME/CFS (and all other variants on that name) research funded by a public, private or charity UK source that is currently ongoing today. I’m relying on information that has been made publicly available, so there is a good chance I will miss something; as I intend to update this on a semi-regular basis please let me know of anything I have overlooked. Charity funding. The charity/private sector has been, and is likely to remain for the foreseeable future, the most likely source of funding for ME/CFS research, particularly biomedical research. Public sources of funding will tend to want any potential research to build on evidence from previous studies meaning they are not keen on funding scientific ‘voyages of discovery’. This, to a point, is understandable, but in a neglected condition such as ME/CFS where we don’t know what we don’t know, it makes it hard to build up a base of scientific knowledge. Presented in alphabetical order of charity name. Action for ME Autonomic dysfunction, T-Cells and neuro-inflammation. Current research studies Autonomic Dysfunction Feasibility Study, Julia Newton, Newcastle University “checking if people with M.E. are willing and able to participate in a six-week non-pharmacological intervention programme, and the effect this has on their symptoms [light-headedness and dizziness]” Read more here. PhD studentship: Healthy Control to ME/CFS T Cell Comparison, Chris Ponting University of Edinburgh This study “investigates whether a person with M.E. differs in their T cell repertoire from healthy controls. This is important because such differences could indicate an ongoing response to infection or autoimmunity.”. Read more here, Simon McGrath wrote more on this here, and we discuss it here. PhD studentship: Neural Responses to Inflammation, Neil Harrison, Brighton and Sussex Medical School This “project will focus on differences in brain activity between people with M.E./CFS and fibromyalgia using state-of-the-art HCP (Human Connectome Project) resting state functional connectivity imaging. It aims to investigate the neural responses to mild inflammation and how these might contribute to fatigue, post-exertional malaise and pain, and correlate with abnormalities of interoception, immune and autonomic nervous system function and metabolism” Read more here, and this thread has some discussion of the study. Invest in ME Leaky gut, autoimmunity and viruses. Current research studies A role for a leaky gut and the intestinal microbiota in the pathophysiology in ME, Simon Carding et al, Quadram Institute “This project will determine if alterations in intestinal barrier function and/or microbiota exist in ME patients, and whether microbe-driven inflammatory responses can provide an explanation for the pathophysiology of ME.” Read more here. Defining autoimmune aspects of ME/CFS, Simon Carding et al, Quadram Institute “The aim of this PhD project is to test the hypothesis that ME is an autoimmune disorder originating in the gut as a consequence of altered intestinal permeability (leaky gut) leading to exposure of the immune system to commensal gut microbes and their products and the generation of pathogenic (auto) antibodies cross-reactive with antigens expressed in the central nervous system (CNS).” Read more here. Gut viruses and ME/CFS, University of East Anglia “This PhD project will investigate whether the underlying causes of ME are related to the presence of specific virus populations within the gut virobiota. Using high throughput DNA/RNA sequencing technology and bioinformatics tools we will determine if and how both resident gut bacteria and virus populations changes with disease progression and if a distinct virobiota signature can be identified in ME patients.” Read more here. ME Association Supporting the UK ME/CFS Biobank, looking at metabolites, microRNA, immune system and energy production. Research infrastructure The ME/CFS Biobank at the Royal Free Hospital in London Not exactly research but a resource that I personally consider extremely important - currently the ME Association’s Ramsay Research Fund (not to be confused with Solve ME/CFS Initiative’s Ramsay Award Program) covers all the basic running costs of the ME/CFS Biobank. Samples from the Biobank can reduce the cost per sample dramatically, meaning that scarce research funds can go further, and that sample analysis can start within weeks, rather than months. Current research studies Examining metabolites in ME/CFS, Karl Morten et al., Universities of Oxford and Newcastle This team is looking for “patterns of metabolites [a substance formed in or necessary for metabolism] that could help to form either a diagnostic test for ME/CFS or help to sub-group people that come under the ME/CFS umbrella” Examination of MicroRNA profiles in peripheral blood mononuclear cells (PBMCs) and exosome-enriched vesicles in ME/CFS, Professor Elisa Oltra et al., University of Valencia This team is aiming to “build up a detailed picture of changes in what are called microRNA profiles.” MicroRNA influence how our genes operate. Examination of immune system status and energy metabolism in ME/CFS, Dr Luis Nacul et al, LSHTM ME/CFS Biobank team and University College London “This new research study will further examine both immune system dysfunction in ME/CFS and defects in the way that energy is being produced at a cellular level.” The ME Association provides an overview of the Biobank and the above studies here. Research completed but yet to be published Comparison of results from a commercial and NHS blood test to assess mitochondrial function in ME/CFS, Boulton et al., University of Newcastle (Unpublished) “This study has been comparing the results of a commercial blood test for mitochondrial function that has been developed by Dr Sarah Myhill and colleagues with the results from an international and widely accepted test that has a long and successful track record in clinical diagnosis and research of muscle disease particularly in the UK.” Immune system dysfunction in ME/CFS, Todryk et al., University of Newcastle (Unpublished) “This is a 16-month study that examined the way the immune system responds, particularly against infections, in people with ME/CFS.” For more information on the two studies above, see here. ME Research UK Gut microbiome, investigating AMPK, oxidative stress, autoimmunity, neuro-inflammation and genome investigation. Current research studies Research in the UK Comparing ME/CFS and IBS: gut immune and microbiome changes, Yan Yiannakou, Newcastle upon Tyne Hospitals NHS Foundation Trust “Following clinical assessment, blood samples will be collected to analyse a variety of markers of immune activation, while stool samples will be taken from which to measure changes in the faecal microbiome using DNA analysis.” Read more here. Investigating abnormalities in AMPK activation, Mark Walker, Newcastle University This “project will use specific AMPK activators (used in the treatment of other diseases such as diabetes) to explore the mechanism through which AMPK is activated pharmacologically, but is not activated by muscle contraction. The researchers will also examine the function of the mitochondria (the powerhouses of the cell) in ME/CFS patients and healthy control subjects.” Read more here. Combating oxidative stress, Faisel Khan, University of Dundee The goal of this study is “to investigate the role of ‘nuclear factor erythroid-derived 2’ (Nrf2). This is an extremely important regulatory protein in the body, and is now believed to be a master activator of the body’s natural defence against oxidative stress.” Read more here. Research outside of the UK Exploring an anti-citrullinated antibody signature in ME/CFS, Mercedes Rincon, University of Vermont “The characteristics of ME/CFS suggest the involvement of autoantibodies in that illness, and Prof. Rincon’s team plans to look specifically for autoantibodies targeted on citrullinated proteins. Using blood samples obtained from the UK ME/CFS Biobank, the researchers will compare autoantibody levels between ME/CFS patients and a group of healthy control subjects.” Read more here. Tracking peripheral immune cell infiltration of the brain in ME, Jarred Younger, University of Alabama “The central hypothesis [..] is that activated immune cells from elsewhere in the body infiltrate the brain, so driving these symptoms of ME/CFS.” Read more here. The role of autoantibodies in ME/CFS, Madlen Löbel & Carmen Scheibenbogen, Charité University Medicine Berlin These investigators will look “at the function of β2 adrenergic receptor autoantibodies in ME/CFS. They will identify patients with these autoantibodies and those without, and compare a wide range of clinical and immunological measures between the two groups. These measures will include clinical symptoms such as fatigue, physical function and signs of autonomic dysfunction, as well as blood vessel function, immune marker expression, and the proliferation of T and B cells.” Read more here. Two dimensional sequencing and machine learning to maximise genetic marker detection, Brett Lidbury, Australian National University This funding will allow Lidbury’s group “to acquire additional genetic data using DNA pooling. They will apply two dimensional DNA sequencing to attempt to identify ME/CFS-associated genetic changes across the entire genome in a clinically well-defined group of 100 patients and up to 40 controls.” Read more here. Continued in the next post.