This thread has a Science for ME News in Brief post for each week in September 2020 written by @Trish, @Kalliope and others. Scroll down to see this week's news.
Week beginning 31st August 2020 News, videos, articles etc. Physios for ME "Heart rate monitoring for Post-viral Fatigue Syndrome and Myalgic Encephalomyelitis" Podcast 1 Conversation between Physios for ME, prof Todd Davenport and Suzan Jackson on the theory of HR monitoring, abnormalities with cardiorespiratory fitness in people with ME, physiological principles for HR monitoring, how to do HR monitoring, difficulties with HR monitoring and HR variation. Duration: 49 min Podcast here Thread here BBC Radio Nottingham Severe ME sufferer and singer songwriter Kara Jane Spencer talks with Alan Clifford about her recent music album "It's Still M.E.". She talks about the severity of her condition and how it became possible to make the album a reality. Website with interview here (one version with music, one without) Thread here ME/CFS Alert Episode 117: Llewellyn King interviews Linda Marban, CEO of Capricor Therapeutics, a Los Angeles-based clinical-stage biotech company. Duration 30 minutes. Video here Thread here CBT for CFS Therapist Manual by Loades, M.E. & Starbuck, J. A disturbing and much out-of-date CBT manual from the paediatric CFS team at Royal United Hospital in Bath, UK for therapist meeting young ME sufferers. Manual here Thread here Trial by Error by David Tuller "What Is the Dynamic Neural Retraining System?" A critical look at this Canadian based programme and the documentation behind its claim to enable people to generate new neural pathways and thus supposedly be helpful for among other CFS/ME. Article here Thread here ....................... Biomedical research Journal of Translational Medicine “Neuroimaging characteristics of ME/CFS: a systematic review” by Shan et al. In this review of neuroimaging studies in ME/CFS, the Australian authors note that most of the 163 studies that were found were notably small and didn’t control for activity levels. The most consistent finding was that ME/CFS patients either recruited additional brain regions or had a greater blood oxygenation level-dependent (BOLD) signal changes than controls for cognitive tasks where they had the same performance. Article here Thread here BMJ Open “Using structural and functional MRI as a neuroimaging technique to investigate CFS/ME: a systematic review” by Almutairi et al. This research team did a systematic review of magnetic resonance imaging (MRI) studies on ME/CFS patients from 1991 to 2019. 35 studies were included. The most consistent finding was CFS/ME exhibited increased activations and recruited additional brain regions. Article here Thread here Brain Sciences "Using Plasma Autoantibodies of Central Nervous System Proteins to Distinguish Veterans with Gulf War Illness from Healthy and Symptomatic Controls" Different CNS autoantibody patterns were found in GWI, ME/CFS, IBS and healthy controls, suggesting possible biomarkers. Paper here Thread here Medscape Conference report "Small-Fiber Polyneuropathy May Underlie Dysautonomia in ME/CFS" "A significant proportion of patients with ME/CFS and dysautonomia may have potentially treatable underlying autoimmune-associated small-fiber polyneuropathy (aaSFPN)" summarises Miriam Tucker from a recent virtual meeting of the International Association for CFS/ME where Ryan Whelan, BS, presented findings from a study of 61 ME/CFS patients.. Article here Thread here ....................... Other research BMJ "Association between quadrivalent human papillomavirus vaccination and selected syndromes with autonomic dysfunction in Danish females: population based, self-controlled, case series analysis" - Hviid et al "... results do not support a casual association between quadrivalent human papillomavirus vaccination and chronic fatigue syndrome, complex regional pain syndrome, or postural orthostatic tachycardia syndrome, either individually or as a composite outcome" Paper here Thread here Journal of Health Disparities Research and Practice "Factors Affecting the Characterization of Post-Exertional Malaise Derived from Patient Input” by Holtzmann et al. In this publication, the research team of Leonard Jason describes how they developed a measure for post-exertional malaise in collaboration with the patient community. Eligible participants were individuals with a self-reported diagnosis of ME and/or CFS who commented on the nine Facebook posts by Leonard Jason. Article here Thread here .......................... Advocacy #MEAction UK and Scotland social media team will be running a course working through Media Trust’s Digital Marketing Strategy webinar series to help with campaigning. There are 6 places available on the course. Details and how to sign up here Thread here ................... Coming events Massachusetts ME/CFS & FM Association: Research Club Support Group 2019 Solve ME/CFS Initiative Ramsay Grant recipients Liisa Selin (PhD) and Anna Gil (PhD) will give a presentation about their research on Sunday, Sep. 27, 2020, at 5:00 PM Eastern Time (US and Canada). Register here Thread here .................................... Covid-19 and ME USC Annenberg - Center for Health Journalism "Covering Coronavirus: The Long Road to Recovery" Excellent webinar on 'long-haulers' and how to cover their stories as journalists. Touches a lot upon ME as well. Panelists Fiona Lowenstein, dr. Haider Warraich and David Tuller. Duration: 1h 5m. Webinar here Thread here BMJ Opinion "Paul Garner on long haul covid 19 - Don't try to dominate this virus, accommodate it" Another insightful article from prof. Garner on his post covid journey with a condition that now resembles ME/CFS. He describes how the Cochrane reviews on CBT and GET have been unhelpful for him and emphasises the need for guidance as well as listening and treating patients with kindness. "For people with covid-19 who have experienced other people doubting the veracity of your symptoms, etch this experience in your memory for ever. If you are a man, remember women experience this more than you; if you are a doctor, remember people with ME/CFS have experienced this for decades.." Article here Thread here Physios for ME present case study of Post Viral Fatigue/Long Covid/Chronic Covid 19 A conversation about key aspects of pacing, avoiding PEM and how a skilled physiotherapist can be of help. Duration: 31 minutes Podcast here Thread here BMJ Rapid Response "Management of post-acute covid-19 in primary care - A warning to Post Covid sufferers and their clinicians" A timely response by Patricia A Davis (@Trish) to BMJ's practice pointer on post covid-19 care where she warns against treatments based on pseudoscience that may cause harm. "Patients with post Covid, ME/CFS, and all other ill understood medical illnesses deserve better than being pushed into the hands of irresponsible purveyors of misinformation and quacks" Article here Thread here The Scotsman "Celtic great Davie Provan on struggling to cope when ME ended his career at 29" Interview with Provan about his career and his 35 years of suffering from ME. "..we're now seeing so many people, after they initially recover from coronavirus, being hit by post-viral fatigue and understanding and help is badly needed". Article here Thread here Other articles of interest News 18 India "Yet Another Global Health Crisis Awaits the World After The Coronavirus Pandemic" Article here Thread here Undark "When Children's Covid-19 Symptoms Won't Go Away" Article here Thread here Vísir (Iceland) "Dæmi um að fólk sé óvinnufært vegna síþreytu eftir kórónuveirusmit" Article here Thread with google translation here ....................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 7th September 2020 News, videos and articles Physios for ME "Heart rate monitoring - experiences of people with ME" In this second podcast on heart rate monitoring, four ME patients share their experiences of using it. Duration: 42 minutes Podcast here Thread here New Zealand The website HealthInfo has updated its section on ME/CFS which provides a helpful basic introduction to ME/CFS for patients, including overview, diagnosis, management and sources of help. Website here Thread here UK NICE guideline for ME/CFS update Review questions have now been published to enable stakeholders to prepare for consultation on the draft guideline which is due to start on 10/11/2020. The 13 questions include barriers to care and effectiveness of interventions. Document web page here Thread here UK 'In your area' local news website 'An online drama series filmed in Kinmel Bay, Conwy, starring local actors, and filmed by a local crew has won the "Best Web-Series Pilot" in the UK Motion Picture Festival. The series, M E, Myself and I was inspired by the experiences of Tom Ellis of Abergele, Conwy of being diagnosed with ME.' Article with video links here Thread here .................... Biomedical research news Naviaux lab update The Naviaux lab website and an update via email outline Dr Robert Naviaux's current hypothesis about ME/CFS as 'a problem of energy distribution, not energy production'. 'We think the CDR(cell danger response)-activating factors that can be transferred to healthy cells in the lab from ME/CFS patient serum, and from the medium from iHHV-6 containing cells in the lab, are responsible for the post-exertional malaise (PEM) that is so devastating to patients with ME/CFS.' Website here Thread here Current trial - USA "Mechanistic Assessment of N-Acetylcysteine as an Antioxidant Therapy for ME/CFS Through Dose Response and Treatment Target Engagement" The study is at Weill Medical College of Cornell University, New York. Starting now with 95 participants: 'This phase two, single-site study will utilize a double-blind, placebo-controlled, randomized, pre-/post-treatment design to investigate the effect of NAC dosing on brain GSH levels and measure temporally concordant plasma levels of several established circulating markers of oxidative stress.' Details here Thread here Open Medicine Foundation The 4th Annual ME/CFS Working Group Meeting on the Molecular Basis of ME/CFS was held via Zoom this week. The meetings between scientists were private but they hope to be able to produce some video talks later. Thread here ....................... Research Physiological Reports "An analysis of 2‐day cardiopulmonary exercise testing to assess unexplained fatigue" by Falvo et al. This test on patients with Gulf War Illness did not find the changes in results on the second day reported in other studies with patients with ME/CFS. After detailed discussion of many technical aspects of CPET, the authors conclude: 'The methods and findings reported here provide a framework for evaluating 2‐day CPET reliability, and reinforce the importance of carefully considering measurement error in the population of interest when interpreting findings.' Paper here Thread here Journal of Psychosomatic Research “Short fatigue questionnaire: Screening for severe fatigue” by Penson et al. This Dutch study tried to determine psychometric properties, a cut-off score for severe fatigue and normative data for the 4- item Short Fatigue Questionnaire (SFQ). Factor analysis showed a one factor solution. Cronbach's alpha was high for almost all study populations, except for the CFS population. ROC analysis suggested a cut-off score of 22 points. Article here Thread here Scandinavian Journal of Pain “Pain in adolescent chronic fatigue following Epstein-Barr virus infection” by Brodwall et al. The Norwegian research team of V.B.B. Wyller reports that the persons in their cohort who experienced chronic fatigue following Epstein-Barr virus (EBV) infection, had significantly higher scores for pain symptoms as compared with healthy controls and persons who didn’t have fatigue following EBV infection. Article here Thread here Preprint (not peer reviewed) "Pressure Point Threshold and ME/CFS comorbidity as Indicators of Physiotherapy Response in Fibromyalgia" by Falaguera-Vera et al. In this small pilot study of a course of physiotherapy massages, patients with fibromyalgia showed some improvement in pressure point thresholds, but those with co-morbid ME/CFS did not. Blood samples were taken for later study. Article here Thread here ....................... Advocacy NIH grants. S4ME forum member Michiel Tack has made an overview of extramural NIH grants for the funding year 2020. Thus far only three new projects were submitted in 2020: Leonard Jason's follow-up of adolescents who experienced mononucleosis, Dikoma Shungu's study of N-acetylcysteine as a treatment for ME/CFS, and a third one of only 35.000 dollars to help organize the recent IACFS/ME conference. Thread here .......................... Employment opportunity UK ME Association Research Correspondent post advertised. A couple of hours a week writing reports on current research, plus attendance at, and reporting on, the talks at UK ME/CFS conferences. Applications close 30th September. Pay rate £10 per hour. Details here Thread here .................................... Covid-19 and ME UK ME Association "Potential research into Long-Covid and ME/CFS at the ME Biobank" by Dr Charles Shepherd Dr William Wier, an infectious disease specialist, and the UK ME/CFS biobank are in the early stages of planning a study using blood samples and clinical information from previously healthy people who have developed long Covid-19 symptoms and who are being invited to express an interest in participating. There is no funding in place yet. Article here Thread here Trial by Error by David Tuller "Some Stuff about Long-Covid, BMJ and ME" Tuller highlights recent important texts in BMJ by Paul Garner and Patricia Davis speaking against a CBT/GET - and a pseudoscientific - approach to Covid-19. Article here Thread here STAT "Persistent symptoms after viral illnesses such as Covid-19 are common, but a challenge to study" by David Tuller About a research project from DePaul University by Leonard Jason and colleagues investigating college students developing ME/CFS after mononucleosis now being expanded to investigate risk factors for developing illness after coronavirus infection. Article here Thread here Wired "They never officially had Covid-19. Months later they're living in hell" Tells the stories of several Covid-19 patients with persisting symptoms. Includes an interview with NIH neurologist Avindra Nath who says: "A percentage of people [with viral illnesses] will end up with a syndrome called [myalgic encephalomyelitis or CFS]. That happens in almost all viral infections,” Article here Thread here EMS World "Long Haulers: The Casualties of COVID-19" Interview with Ken Scheppke, MD, and state EMS medical director for Florida and chief medical officer for Palm Beach County Fire Rescue. He has gone through the medical literature for potential causes of lingering Covid-19 symptoms which turned his attention to ME/CFS: “Now is the time for medicine to turn its collective eye towards this post-viral syndrome and figure out what’s going on so we can help these poor people suffering with this illness,” Article here Thread here Other items of interest Arquivos de Neuro-Psiquiatra "Neurological complications of COVID-19: from bridesmaid to bride" by Avindra Nath et al Article here Thread here The Age "Long-Term effects of virus shine a light on chronic fatigue sufferers" by Sue Green Article here Thread here Medical News Today " 'Ill, abandoned, unable to access help:' Living with long COVID" Article here Thread here LCB " 'Long covid' sufferers tell of battling debilitating symptoms that last for months" Article here Thread here ..................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 14th September 2020 News IACFS/ME Conference Reports The International Association for ME/CFS virtual conference was held on 21st August. Conference reports have been published by Charlotte Stephens, Research Correspondent of the UK ME Association, and by Dr Louise Crozier, Science and Engagement Director of ME Research UK. MEA report here MERUK report here Thread here New Zealand Following Professor Warren Tate's retirement from his university post, he has given MEAwareness New Zealand an update on his plans to continue some ME research and his ideas for future research. Thread with summary here RSVP Live "Dublin mum shares warning signs of ME in children after daughter's diagnosis aged just 7" Interview with Irish family where both mother Sarah and daughter Hayley suffers from ME. "One of the hardest parts has been the constant fights with doctors to get a diagnosis, to get help managing the symptoms but also just the isolation of family and friends not really getting it". Article here Thread here ......................... Trial by Error by David Tuller UK Docs Speak Up on Long-Covid; Mayo Shifts Gear (a Little) On a recent open letter in BMJ by doctors suffering from persisting Covid-19 symptoms which among other raised the importance of safe rehabilitation. Also on the Mayo Clinic, which has finally removed their outdated advice on cognitive behavioural therapy and graded exercise therapy as treatment approaches for CFS, however still recommends increased exercise. Article here Thread here A Short Talk for UK Docs and Researchers David Tuller recently gave a talk online about the PACE trial. This was initiated by Professor Paul Garner and one of the questions Tuller raised were: "Why have all levels of authority in UK science endorsed this study - journals, NJS, Cochrane, etc.? Why hasn't it been dealt with? Why have patients been so poorly treated?" Article here Thread here ...................... Resources for clinicians A group of doctors called the US ME/CFS Clinician Coalition has created a website for medical providers with information on diagnosis and management of ME/CFS. Website here Thread here Nursing Management "Chronic fatigue syndrome" by Bush M. Marianne Bush has written an overview article on ME/CFS for the journal Nursing Management. Bush notes that "CFS is a biologic, not a psychologic, illness" and that “in 2017 the CDC and the Agency for Healthcare Research and Quality removed GET and CBT as recommended interventions.” The main goal of treatment is described as “helping patients improve their quality of life through symptom relief.” Article here Thread here .................... Research and commentary Frontiers in Neurology “Characterization of Post–exertional Malaise in Patients With ME/CFS” by Stussman et al. The research team that is studying ME/CFS at the National Institutes of Health (NIH) has formed focus groups with 43 participants to listen to patients’ experiences and better understand PEM. ME/CFS patients describe PEM as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover. Article here Thread here Clinical and Experimental Rheumatology “Orthostatic stress testing in ME/CFS patients with or without concomitant fibromyalgia: effects on pressure pain thresholds and temporal summation” by Van Campen et al. This large study by the Dutch research team of Frans Visser and Linda Van Campen shows that pressure pain threshold decreased in ME/CFS patients after head-up tilt test (HUT), but did not change post-HUT in healthy controls. Windup pre- and post-HUT was significantly higher compared to healthy controls, but did not change from pre- to post-HUT. Article here Thread here The BMJ "Cumberlege review: It’s not only drugs and medical devices that can cause harm" by Struthers C. This commentary by Caroline Struthers was published as a letter in the BMJ. Struthers argues that “Evidence justifying the use of behavioural and psychosocial treatments escapes the greater scrutiny given to research on drugs and medical devices. Patients are disbelieved if they report they have been harmed, and blamed if they don’t get better.” Article here Thread here ......................... Covid-19 and ME Live Science 'We just had no answers': COVID-19 'long-haulers' still learning why they're sick. Article includes interviews with professor Garner and ME researcher Dr. Mady Hornig. Dr. Hornig is leading a study of "post-COVID phenomena" while experiencing fatigue after Covid-19 herself. Article here Thread here Sky News Coronavirus: More than half of COVID-19 patients experience ongoing, fatigue, study finds. Dr. Charles Shepherd from the ME Association says thousands of people with post-coronavirus complications have contacted the organisation and he underlines the need for better coordination of support. Carol Monaghan MP wants to protect people from losing their job by increasing the length of sick leave and allowing employees to come back part time. Article here Thread here Norway Interview in the newspaper Dagsavisen with journalist, author and physiotherapist Jørgen Jelstad about the severity of ME and how the patient group is treated, and on the possible increase of ME patients due to the pandemic as well as how this again might lead to more knowledge about ME. Article here Thread here Other items of interest The Guardian "I was infected with coronavirus in March, six months on I'm still unwell" Article here Thread here CNN "Redefining Covid-19: Months after infection, patients report breathing difficulty, excessive fatigue" by Ryan Prior Article here Thread here Nature "The lasting misery of coronavirus long-haulers" Article here Thread here RNZ "Sick and tired of Covid-19: The 'recovered' patients who aren't getting better" Article here Thread here ........................ S4ME social media: Facebook, Twitter and You Tube
Week beginning 21 September 2020 News, articles, videos UK NICE guidelines "Forward-ME Group – Graded exercise therapy for ME/CFS and COVID-19" ME Research UK has published recent correspondence between Forward ME and NICE in which they raised concerns about NICE's continuing recommendation of GET for ME/CFS patients despite their recent statement that GET should not be assumed to be appropriate for long Covid patients. Forward ME also raised concern about the recent NICE recommendation of exercise in the chronic pain guideline. NICE has replied by simply restating the current situation. ME Research UK article here Thread here UK Sheffield ME & Fibromyalgia Group "ME/CFS in children and young people - an ideal approach compared with less than ideal approaches" Dr Nigel Speight and the TYMES Trust charity, 24th September. 'This talk is especially relevant to families supporting young people and those not getting the support they need from schools and services. It will also be relevant to families supporting young people with long Covid symptoms.' The video is available on Facebook and will be available on YouTube. Duration 1h 32m. Thread with links here USA #MEAction "Here's what happened at the CDC's September 2020 ME/CFS meeting" Summary of the recent ME/CFS Stakeholder Engagement and Communication (SEC) conference by CDC. Among themes are new initiatives, project- and website update from CDC, and highlights from Community Q&A. Article here Thread here Trial by Error by David Tuller "More CBT Research from Sir Simon and Professor Chalder, Part 2" Last month Tuller wrote a critical analysis of the paper "Cognitive Behavioural Therapy for chronic fatigue and CFS: outcomes from a specialist clinic in the UK" based on its preprint. This paper by Wessely et al has now been officially published and "remains the same unacceptable nonsense that it was in its pre-print days". Article here Thread here ...................... Research news NIH "NIH study details self-reported experiences with post exertional malaise in ME/CFS" Press release about the recent NIH study "Characterization of Post-Exertional Malaise in Patients with ME/CFS" (see last week's News Brief). Lead author and NIH statistician Barbara Stussman comments: "It was quite striking to hear the extent to which PEM can affect their quality of life". Article here Thread here Open Medicine Foundation A brief update reports that Dr Systrom has started the clinical trial of Mestonin: 'The Exercise Response to Pharmacologic Cholinergic Stimulation in ME/CFS' Update here Thread here Dr Ron Davis research update "Is Ron Davis’s ME/CFS Collaborative Research Center at Stanford Poised for a Breakthrough?" Health Rising blog by Cort Johnson. The nanoneedle has been redesigned to test 100 samples at once, and the new machines are on order. Dr Davis is busy with research applications and meetings via Zoom. Article here Thread here Study recruitment Red Clinic in Sweden is recruiting patients for a study on neurometabolic diagnoses as fibromyalgia, ME/CFS, POTS and chronic lyme disease. Participation involves filling out a questionnaire and collection of specimens. More information here Thread here ..................... Psychosocial Research European Child & Adolescent Psychiatry “How common are depression and anxiety in adolescents with chronic fatigue syndrome (CFS) and how should we screen for these mental health co-morbidities? A clinical cohort study” by Loades et al. In this study, participants recruited for the MAGENTA trial received a semi-structured diagnostic interview (the Kiddie Schedule for Afective Disorders and Schizophrenia KSADS) to screen for mental health co‑morbidities. The results showed that approximately a third met the criteria for at least one mental health diagnosis, 1 in 5 met criteria for major depressive disorder and approximately 1 in 4 met the criteria for at least one anxiety disorder. Questionnaires such as the Hospital Anxiety and Depression Scale-Anxiety (HADS) were not sufficiently accurate in detecting clinically significant anxiety and depression. Article here Thread here BMC psychiatry "Feasibility of group-based acceptance and commitment therapy for adolescents (AHEAD) with multiple functional somatic syndromes: a pilot study" by Kallesøe et al. In this uncontrolled pilot study 21 adolescents received acceptance and commitment therapy (ACT) for what the authors call “multiple functional somatic syndromes”. The authors report that ACT “was feasible and potentially efficacious and warrants testing in a larger clinical trial.” Article here Thread here ....................... Coming events UK Sheffield ME & Fibromyalgia Group Octoberfest 2020 People with ME, Fibro and long Covid are invited to an online festival on Zoom from 5th to 23rd October. Events include a quiz, crafts, singing, mindfulness and information sessions. The speaker at the AGM on 22nd October is Dr Mark van Ness. Details here Thread here UK: Chronic Illness inclusion project Online open discussion: "Social Security for All - Agreeing a Way Forward", 3-5pm, 7th October via Zoom. The Chronic Illness Inclusion Project is a member of The Commission on Social Security, led by Experts by Experience. The Commission has identified 8 ideas for a better benefits system. This event is part of the public consultation. Details and sign up here Thread here USA: #MEAction New York A free CME (Continuing Medical Education) webinar for clinicians will be held on Wednesday, September 30, from 12:00 - 1:00 PM EST. Dr. David Kaufman will speak on the topic "Post-Viral Syndrome and ME/CFS: What Every Clinician Needs to Know". Registration required. Announcement here Thread here ....................... Covid-19 and ME VRT (in Dutch) 'Stijgt het aantal chronisch vermoeide mensen door corona?'. This dutch opinion piece by Evelien Van Den Brink about ME/CFS and long-term symptoms following COVID-19 was published on the Belgian public news agency, VRT. Article here Thread here New Zealand: TVNZ "Long-term fatigue dubbed the 'hidden toll' of Covid-19" Article has an interview with ME researcher Warren Tate from Otago University who says long Covid-19 matches many ME symptoms. Researcher and senior lecturer in psychology at Victoria University of Wellington, Carolyn Wilshire, underlines the severity of ME and that it is a long lasting disease. Article here Thread here The Atlantic "The Core Lesson of the COVID-19 Heart Debate" by Ed Yong Article is mostly about cardiological issues concerning Covid-19, but mentions ME towards the end and how the heightened focus on COVID-19 "also shines a spotlight on phenomena that have long been consigned to the shadows". Article here Thread here JAMA "As Their Numbers Grow, COVID-19 "Long Haulers" Stump Experts" Includes interview with Dr. Hornig on her upcoming prospective studies with the Solve ME/CFS initiative. "Because of the large number of COVID-19 cases occurring simultaneously, we have a unique scientific window and a huge responsibility to investigate any long-term consequences and disabilities that COVID-19 survivors may face" Article here Thread here Other items of interest BBC "Long Covid: 'My fatigue was like nothing I've experienced before'" Article here Thread here Bloomberg "Covid Everlasting" Article here Thread here ABC radio "When COVID won't go away" Segment here Thread here ........................ S4ME social media: Facebook, Twitter and You Tube
