My notes from the day. Others will be able to give you a better narrative, this will be more a collection of my thoughts and my notes of what I thought was of interest. Sorry for the delay, other things got in the way. Elizabeth Unger, CDC - ME Research Update at Centres for Disease Control, USA I didn't take any notes. Vicky Whittemore, NiH - ME Research Update at National Institutes of Health, USA Data will be shared between all (NIH-funded I assume) collaborative research centres. The central website for their collaborative centres is https://mecfs.rti.org/ A NINDS Advisory Council Working Group for ME/CFS Research has been set up which includes Jen Brea, see https://www.ninds.nih.gov/About-NINDS/Who-We-Are/Advisory-Council/ME-CFS-Working-Group for more info. NIH are calling for grant applications. Neuroscience Biomarker Program can possibly fund ME research. I think this gives further information on that, https://www.ninds.nih.gov/Current-Research/Focus-Tools-Topics/Biomarkers NIH have launched an Early Career Investigators Network website, see https://mecfseci.rti.org/ Regarding applications. They do receive high quality applications, statistically ME applications are funded slightly more often than the average but they just aren't receiving enough applications. Maureen Hanson, Cornell - Immune Dysregulation in ME/CFS Investigating immune dysregulation Provided an overview of two recently published studies that we have threads for on the forum (I may add links to those later). First study looked at glycolysis and oxidative phosphorylation in activated T-Cells. No significant difference found between patient and control for oxidative phosphorylation. Reduced glycolysis was found in patients CD4 and CD8 cells. Also compensatory glycolysis was found to be inhibited. Mitochondria membrane potential was investigated. CD4 no difference was found. CD8 patient samples had lower membrane potential. Extracellular vesicles (EVs) study No difference in total numbers but smallest sized are more numerous. Cytokine network is different between patient and controls They are looking at what other proteins and RNAs are present in EVs in both patients and controls Mady Hornig, Columbia - Fingerprinting the Phenotypes of ME/CFS Along the Gut-Immune-Brain Axis Her talk was, I believe, based mainly on the paper discussed here, https://www.s4me.info/threads/insig...ehensive-metabolomics-2018-lipkin-et-al.4873/ A combination of me flagging and Mady talking, relatively, really quickly, meant I've got hardly any notes but, generally, she talked about how their research seems to have started to provide a number of potential subsets. She did note that GI comorbidity is seen in a number of brain conditions/disorders. Don Staines, NCNED - Transient receptor potential ion channels in the aetiology and pathomechanism of CFS/ME I didn't bother taking notes, I'm afraid. I'm unimpressed with their research so didn't pay much attention but did note that they make the claim that they have discovered the pathology of ME - I don't believe that they have but that is what they claim. The whole presentation came across as being defensive and emphasising how they are using "gold standard" tests - what he didn't convince me of was that their results, based on very small numbers, can be taken to represent all those diagnosed with ME. Needed to switch off from note taking for a while so the next sections are from memory. David Andersson, Andersson Lab, Kings College London - Pathophysiological Basis of Fibromyalgia Is investigating fibromyalgia in mice by, if I remember correctly, injecting blood from FM patients into mice, and then physically testing how sensitive to pressure the mice become. He believes that his work validates this as a way to study FM and also believes that this provides a potential study route for ME. Jesper Mehlsen, Bispebjerg Hospital, Copenhagen, Denmark - Characteristics and Pathophysiological Changes in a Large Cohort of Danish ME-patients A relatively new researcher to the ME field, a main part of what he has been looking at is the connection, if any, between ME and the HPV vaccination. I don't recall him making a definitive statement either way on this though. One thing I did make a note of was that there was no mention of PEM in any of the data he was looking at, which I believe came from a national health survey (maybe, am a bit hazy on that now). Stuart Bevan, Wolfson Centre for Age-Related Diseases, Kings College London - Pain and ME/CFS He works alongside David Andersson, and also uses mice to research pain - and right at the moment, that's all I can remember. Sorry, I blame that on being the first talk after lunch... Simon Carding, Quadram Institute Bioscience - ME Research Developments at Quadram Institute More up to speed for this one. Their focus is on severe patients. They are running a GP Fellowship scheme - a GP, once a week, will spend time at their lab. They are offering a joint Norwegian(?)/English PhD studentship - study time split between them and the Norwegian institution (sorry, can't remember the name of it). They are running a FMT (fecal matter transfer/transplant) study. Called RESTORE-ME. Dr Bansal providing patients. Canadian and IOM selection criteria used. Subjective and objective measures used. Primary end points are Maximal Daily Activity and 6 min Walk Test. In UK, FMT is considered a medicine so subject to stringent restrictions. Øystein Fluge, Haukeland University Hospital, Bergen - Rituximab in ME/CFS: a randomised, double-blind and placebo-controlled trial Dr Fluge was reporting on the stage 3 results that we have covered at length in our discussion thread here. A couple of interesting points, based on information gathered for the study: A paper will be published on endothelial function. And a paper will be published on GI function. CycloME, their study on cyclophosphamide - the follow up period was extended so publication is not due until later this year. Nancy Klimas, Institute for Neuro Immune Medicine, Nova Southeastern University - Integrative Medicine Approach to Treatment of ME This presentation was about how important it was for the patient to be treated as whole rather than attempting to address individual symptoms in isolation. Nothing stood out to me as especially noteworthy but then my interest was in the research and less so clinical care. Ron Tompkins, Director of the Center for Surgery, Science and Bioengineering, Massachusetts General Hospital - Harvard Plans for Clinical Research into ME/CFS Pretty interesting talk about what they plan to do at Harvard, which would seem to be in-depth and wide-ranging, but obviously there was nothing outstanding enough to stand out enough for me to note it down. Michael VanElzakker, Massachusetts General Hospital/Tufts University - Ongoing study of physiological and fMRI measures before/after symptom provocation by invasive cardiopulmonary exercise testing He started with the notes that the term "neuroinflammation" is imprecise and that "microglial activation" is a proxy for neuroinflammation. I again found it interesting but, I think due to the technicality of the subject, the only notes I have made are Perivascular spaces are bigger than normal Failure in perfusion first, followed by neuroinflammation? Dr VanElzakker was asked about CCI & surgery at the end of the day. My brief notes on his comments are He has his doubts N=1 Jen has had multiple interventions in a relatively short time There is a need to be really careful It's not mild surgery Specialised surgeons may be over keen, important to get second or third opinion. NB: Dr VanElzakker has agreed to the idea of one of my video Q&As, but that will need to wait for a month or two due to his timetable. Ron Davis, Professor of Biochemistry and Genetics at the Stanford School of Medicine in Stanford - Establishing new mechanistic and diagnostic paradigms for ME/CFS In his search for a pathogen associated with ME/CFS Massive DNA sequencing of particles from blood shows no new of known pathogens. Very sensitive search for known DNA viruses shows less than in healthy controls. Very sensitive searches for a parasite, RNA viruses or a fungus have not found anything. Very sensitive search for a bacterial pathogen by massive DNA sequencing is in process. He doesn't believe that there is any evidence of ongoing infection. Nanoneedle Added 10 patients and 10 controls to the cohort being tested. Screening patients with other diseases. Wants to design and build high throughput electronics to take the current cost from $30k and each device being able to run 2 samples at a time, to a $200 cost able to run 100 samples at a time. Also wants to design and fabricate better chip with easier-to-use electrical connections. Plans to screen FDA approved drugs. Looking to produce an electronic, bluetooth-enabled, wearable sweat sensor Measures lactate, glucose, sodium and potassium Capable of electronically inducing sweat. Next thing they will look at is cytokines to see if they could be a biomarker for PEM. Copaxone and SS-31, when added to patient blood, nanoneedle results looks like healthy controls. When asked about the metabolic trap [He] hasn't been able to disprove it [the metabolic trap theory] but he doesn't trust the data. [He believes there is] too high an error rate. And that is the end of my notes.