This thread has a Science for ME News in Brief post for each week in November 2019 written by @Trish, @Kalliope and others. Scroll down to see this week's news.
Week beginning 4th November 2019 News UK Research proposal The ME/CFS Biomedical Partnership: Genetics and Biomarkers Professor Chris Ponting and the CureME UK ME/CFS Biobank team headed by Dr Luis Nacul are planning to bid for funding from the Medical Research Council and National Insititute for Health Research. The proposed bid includes a large genome wide association study and an expansion of the ME biobank. The MRC/NIHR is supporting a workshop this month to bring together scientists, charities and patients, to provide recommendations to improve the research proposal. The Patient and Public Involvement steering group includes @Andy as a patient representative and Sonya Chowdhury, CEO of Action for ME. Thread with details and Q&A here Blog by @Simon M here .................................... Media, video, blogs, other news Science for ME Video Andy talks to Allison Ramiller, Director of Research Programs, and Dr Sadie Whittaker, Chief Scientific Officer of Solve ME/CFS Initiative about the studies funded in 2019 by their Ramsay Grant program (see last week's news). Of note the help they give to applicants on preparing applications, bringing in experienced researchers new to ME, and encouragement to researchers to collaborate. Duration 37 minutes Video here Thread with links to further details here Discussion thread here Norway The Norwegian ME Association has launched their annual campaign for increased knowledge about ME. This year's theme is PEM (Post Exertional Malaise). Thread here Norway Prime Minister Erna Solberg has invited the Norwegian ME Association - Rogaland County for a meeting in February 2020 about their seminar for schools on how to adapt teaching for pupils with ME. Thread here Announcement here (in Norwegian) UK CMRC DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 16 October. Topics discussed included research submission to the MRC, next year's conference, and updates from working groups. Draft minutes here Thread here New Zealand ME Awareness has republished an excellent newspaper article ''Marcel Robert's view is a darkened room in a rest home: Life with chronic illness ME'' by Natalie Akoorie. The article also discusses Warren Tate's research. Article here Thread here Kenya Standard digital: "People said the pain was all in my head" The article tells the story of Gladys Maina's 19 year long battle with the health care system until she was finally diagnosed with CFS. Article here Thread here USA The Occupy M.E. blog has two new posts about NIH research funding for ME in 2019. An excerpt: "Since 2017, our total funding has declined by 14%, while investigator-initiated funding declined 25%" Blog posts here and here Thread here Sweden A distressing court case has resulted in media debate about euthenasia and about the need for decent care for people with ME. Thread here (with trigger warning) .................................. Biomedical research Frontiers in Immunology Hypothesis and theory article: ''ME/CFS as a hyper-regulated immune system driven by an interplay between regulatory T cells & chronic human herpesvirus infections'' by Nacul et al. The authors used simulation to test their hypothesis, and concluded 'A deeper analysis of Tregs in the pathogenesis of ME/CFS will help to assess the validity of this hypothesis.' Article here Thread here ................................... Other research BMC Neurology ''A logistic regression analysis of risk factors in ME/CFS pathogenesis'' by Lacerda et al. This study used questionnaire data about the 6 months prior to onset from the UK ME biobank for people with ME, MS and healthy controls. Analysis showed more frequent infections, including colds and flu as common predisposing factors for ME. Higher rates of low income and single status in ME patients may be consequences rather than causal factors. Article here Thread here Fatigue biomedicine health & behavior "Differentiating post-polio syndrome from ME and CFS" by Klebek et al. The authors compared patients with self-report diagnoses of ME/CFS to patients with post-polio syndrome (PPS). The former were more functionally impaired. Symptoms such as slowness of thought, worsening of symptoms after mild mental activity and heart rate increases after standing were worse in the ME/CFS group. PPS-patients had worse scores for muscle weakness, feeling unsteady on feet, and cold limbs. Article here Thread here Internet interventions “Implementing guided ICBT for chronic pain and fatigue: A qualitative evaluation among therapists and managers” by van der Vaart et al. The Dutch team of Hans Knoop has studied factors that influence the implementation process of internet-based cognitive behavioural therapy (ICBT) for chronic pain and CFS in mental health care. Interviews with 14 therapists and 4 managers of mental health care clinics were conducted to identify facilitators and barriers. Article here Thread here ................................................... Coming events Norway The Norwegian ME Association is organising an open conference about PEM with Betsy Keller, Joseph J. Breen, Katarina Lien and Kristina V. Nielsen as lecturers. The conference takes place at Nov. 26th and follows a two day research conference. Thread here ................................ S4ME social media: Facebook, Twitter and You Tube
Week beginning 11th November 2019 News Sweden This week the advocate campaign #MEvårdsaknas (ME care missing) handed over a petition with over 9 000 signatures to the Parliamentary Committee on Health and Welfare. Many stories from ME patients about lack of care were also included. Petition here Thread here ................................... Trial by Error by David Tuller My Talk in Newry, Northern Ireland A talk Dr Tuller gave in Ireland Nov. 5th was filmed and is now available. The talk was titled: The Lightning Process Trial: A Saga of Terrible, Horrible, No Good, Very Bad Research - and Even Worse Editorial Decisions". Article here Talk here Thread here A Follow-Up Letter to Bristol Chief executive of the Health Research Authority, Teresa Allen, recently sent an appreciative letter about Tuller's work to his university. The letter has been forwarded to Bristol University as a follow-up to Tuller's request that Bristol withdraw their complaints about his "actions and behaviour". Letter here Thread here ................................... Videos, blogs, articles Article ''What is ME?: A Medical Outsider’s Viewpoint'' by Jonathan Edwards. Prof. Edwards shares his insights about the nature of ME and issues surrounding it, including comment on the BPS model, some flawed biomedical theories, and suggested useful avenues for biomedical research, and the need for clinicians and scientists to admit how little they know. Thread with link to article here Harvard Health Publishing "Chronic Fatigue Syndrome: Gradually figuring out what's wrong" Short overview by Prof. Anthony Komaroff about ME where he lists abnormalities found so far. He urges: Listen to your patients. The patient is telling you the diagnosis. Article here Thread here ME/CFS Research Review ''Stanford symposium: the potential of smartphones to better understand diseases, including ME/CFS'' by Simon McGrath. An overview of the work of Dr Michael Snyder who heads the Stanford Centre for Genomics and Precision Medicine, as well as the Genetics Department at Stanford University. ''His presentation highlighted the potential of technologies to monitor health and better understand diseases – including ME/CFS.'' Article here Thread here Solve ME/CFS Initiative Science and Discovery Webinar Series ''ME/CFS in the Era of the Human Microbiome: Persistent Pathogens Drive Chronic Symptoms by Interfering with Host Metabolism, Gene Expression, and Immunity'' Presented by Amy Proal, Ph.D. November 14th. Now available on You Tube. Duration 1hour 37 minutes. Video here Thread here ................................... Biomedical research Journal of Psychosomatic Research ''Editorial: Autonomic markers, CFS, and post-exertion states'' by Friedberg. Heart rate variability (HRV) is a useful indirect measure of parasympathetic (vagal) activity in CFS, where there is reported sympathetic nervous system hyperarousal. Friedberg concludes: '... reduced HRV may be a sensitive (and conveniently assessed) autonomic indicator of post-exertional worsening and a correlate of activity and fatigue that may differentiate CFS from healthy controls'. Article here Thread here BMC Systematic Reviews ''A systematic review of natural killer cells profile and cytotoxic function in ME/CFS'' by Eaton-Fitch et al. 17 studies included showed variable results on some aspects of NK cells. The most consistent finding was impaired NK cell cytotoxicity. The authors suggest this gives the basis for future investigations and possible subsets. Article here Thread here ........................................ Other research Journal of Patient-Reported Outcomes “Developing and pretesting a new patient reported outcome measure for paediatric CFS/ME: cognitive interviews with children” by Paslow et al. The research team of Esther Crawley is developing a new questionnaire to assess children with ME/CFS. The authors applied a Three-Step Test-Interview where patients are encouraged to think aloud and verbalize thoughts whilst completing the questionnaire. Interviews with 24 patients were used to assure the new questionnaire is valid, relevant and comprehensible to young ME/CFS sufferers. Article here Thread here BioPsychoSocial Medicine “The longitudinal effects of seated isometric yoga on blood biomarkers, autonomic functions, and psychological parameters of patients with CFS: a pilot study” by Oka et al. These Japanese researchers have tested the effects of isometric yoga in fifteen patients with ME/CFS. While patients reported improvements in fatigue and depression questionnaires, there was no significant difference in various blood biomarkers such as cortisol, carnitine or pro-inflammatory cytokines. Article here Thread here ................................ Survey England and Wales - Online survey You are being invited to take part in a research study to explore the views and needs of patients with severe ME/CFS. This project has been commissioned by the National Institute of Health and Care Excellence (NICE). Research is being carried out by Dr Keith Geraghty of Manchester University. Information here Thread with link to survey here ................................... Advocacy USA #MEAction has posted an in-depth discussion of diagnostic criteria under the title "Demystifying the Diagnostic Criteria for ME and Related Disease". Article here Thread here ................................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 18th November 2019 In the media Sweden The news about a promised specialist clinic for ME patients not opening after all, and a petition with over 10 000 signatures demanding better care for ME patients; #MEvårdsaknas (ME care missing) have received media coverage from among others the Swedish broadcaster SVT. Article here (Swedish) Thread here New Zealand Stuff ''A rise in the benefit is long overdue - I know, because I struggle to survive on it'' by Carrie Coddington, ME sufferer and a long term benefit recipient. Article here Thread here USA Teen author Vidhima Shetty has been honored for her work on ME/CFS advocacy. Her work started with an article for her high school newspaper which led to her publishing a book called "An Adolescent's Guide to ME/CFS." She donates proceeds to the Open Medicine Foundation. Article here Thread here Denmark "Despite the intervention of politicians, ME patients are still being failed" Excellent letter to the editor in a health political journal by Vibeke Ilsøe Gustavussen, physiotherapist and mother of a severe ME patient. It's directed to the Minister of Health and urges him to make sure the Parliament's decision on ME being defined as a physiological illness is followed through. Letter here (Danish) Thread with google translation here Austria Short and informative segment for general audience about ME/CFS on Austrian national TV broadcaster. Link here (German) Thread here Norway Two big articles about ME and PEM on the news site ABCNyheter. Interviews with doctors and researchers Kristian Sommerfelt and Katarina Lien as well as with two ME patients. Articles here and here (Norwegian) Thread with google translations here USA Article profiling Wisconsin ME/CFS patients: "Western Wisconsin residents struggle with chronic illness." Includes interviews of severe and moderate ME/CFS patients. Also quotes Dr. Susan Levine (ME/CFS clinician and researcher), Dr. Elizabeth Unger (CDC), and Emily Taylor from the Solve ME/CFS Initiative. Article here Thread here ............................................ Trial by Error by David Tuller Open Letter to Dr Godlee about BMJ's Ethically Bankrupt Actions (2) As chief editor Dr Godlee never responded to a previous open letter from Dr Tuller about BMJ's decision to republish the unreliable findings from the Lightning Process trial, another attempt has been made. This time signed by 72 experts and 65 advocacy groups. Letter here Thread here .................................. Videos and podcasts New Zealand In a presentation hosted on 31 October 2019 by ME/CFS Canterbury, Dr. Eiren Sweetman gives an overview of the research her team at the University of Otago is conducting. Sweetman mentions that she and her colleagues have found similar metabolic abnormalities in ME/CFS as the research group of Dr. Fisher in Australia. Video here Thread here UK 'Let's Talk About CBT'. This podcast from the British Association for Behavioural & Cognitive Psychotherapies (BABCP) has an episode focused on CFS. Professor Trudie Chalder and a patient called Ben are interviewed to discuss cognitive behavioural therapy (CBT) in CFS. Some controversial claims are made during the program, not a recommendation. Podcast here Thread here ................................. ME organisations #MEAction has conducted a survey on diagnostic criteria among ME/CFS clinicians and researchers. 22 out of 65 experts completed and returned the survey questions. The Canadian Consensus Criteria (CCC) was the case definition that received the most support. Article here Thread here ME Association Guest blog by Louise Shepherd "Get Well Soon" Reflections on receiving greetings such as "Get well soon" for people who are chronically ill. Blog post here Thread here ............................................. Biomedical research Fatigue: Biomedicine, Health & Behavior "Low-dose naltrexone in the treatment of ME/CFS" by Olli Polo et al A retrospective analysis of medical records from 218 patients who were diagnosed and treated in Finland during 2010-2014. 73.9% reported positive response. Average follow-up was 1.7 years, no control group, subjective outcomes. Paper here (Abstract) Thread here Brain, Behaviour and Immunity "Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers for human ME/CFS" by Akiko Educhi et al. From the abstract: ''From two independent proteomic analyses using circulating EVs from ME/CFS, healthy controls, idiopathic chronic fatigue, and depression, proteins identified from ME/CFS patients are involved in focal adhesion, actin skeletal regulation, PI3K-Akt signaling pathway, and Epstein-Barr virus infection... Our results identified circulating EV number and EV-specific proteins as novel biomarkers for diagnosing ME/CFS, providing important information on the pathogenic mechanisms of ME/CFS.'' Paper here Thread here ...................................... Other research JAMA Pediatrics “The Unaware Physician's Role in Perpetuating Somatic Symptom Disorder” by Morabito et al. In this viewpoint, the authors claim that “investigatory zeal is increasingly being valued over comprehensive biopsychosocial history” and that physicians are reluctant to diagnose mental health or behavioral problems in patients with CFS. Morabito et al. argue that physicians often play a role in perpetuating Somatic Symptom Disorder (SSD) for example by providing extensive but unnecessary investigations. Article here Thread here ................................. Advocacy UK ME Association: ''Speak up for M.E. in the General Election: Contact Your Candidates'' The ME Association urges people to get in touch with their local candidates before the General Election 12th December. They've provided a template letter and links to overview of candidates. More information here Thread here #MEAction #NotEnough4ME After Dr. Koroshetz's tepid response to #MEAction's recent letter to NIH where they urged for more to be done for ME patients, #MEAction has initiated a social media campaign inviting patients to make a short video demanding more action from NIH. More information here Thread here ..................................................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 25th November 2019 News UK ME/CFS Biomedical Partnership Patient & Public Involvement (PPI) Steering Group Update A workshop hosted by the Medical Research Council and National Institute for Health Research was held this week. Researchers, patients, supporters and funders met to assist in developing the research proposal including a Genome Wide Association Study (GWAS). Topics discussed included case definition, methodology and governance. A research proposal will be submitted in January. See survey on selection criteria below. Thread with update here ....................... Blogs, articles, ... #MEAction "A trial of ME - Elizabeth's story" Elizabeth Thorne deteriorated after having received CBT/GET as part of a CFS trial in Bristol, 2006. Her deterioration was not reported in the study. Article here Thread here A Life Hidden – the First Year Naomi Whittingham, who has had severe ME for many years, has this year started a blog with a series of thoughtful articles, including 'The Power Of Listening' originally written in 2016 for a training seminar for junior doctors; a series of 3 articles critiquing the BACME guidelines on severe ME; and several reflective articles on life with severe ME. Article reviewing the year here Thread here Cornell Research ''A Researcher's Duality: Plants, Biomedical'' by Jackie Swift Article about Prof. Maureen Hanson, originally a plant biologist who researched gene expression in plants, but who switched to researching ME after her son was diagnosed. She is the founder and director of the Cornell Center for Enervating NeuroImmune Disease. Her research includes the immune system and extracellular vesicles, and how they change during exercise and PEM. Article here Thread here UK NHS Digital has confirmed, in a response to a question from the Grace Charity for ME, that ME is still listed under ICD-10 code G93.3 Postviral fatigue syndrome. ''Within the structure of ICD-10, the code G93.3 is indeed located in Chapter VI Diseases of the nervous system.'' Thread with response here .......................... Research news and talks Dr Michael van Elzakker gave a talk in Boston entitled “Investigating ME/CFS at the intersection of the nervous and immune systems.” He discussed some challenges and opportunities in using brain scans to study communication between the immune and nervous systems. He described two ongoing studies that seek to elucidate autonomic dysfunction and possible neuroinflammation in ME/CFS and also gave an update on the OMF-funded Harvard ME/CFS Collaboration. You tube talk here (34min) Q&A here (30min) Thread here Dr Ron Davis spoke at the Albert Einstein College of Medicine in New York. 'His presentation covered biological abnormalities that have been observed in ME/CFS patients, potential diagnostic tools under development, and potential drug treatments to treat this disease'. You Tube video here (1h 35m) Thread here Sweden Planned study: Craniocervical dysfunction, neuroinflammation and infection in ME/CFS compared with healthy controls. Thread with link to protocol and some translation here ......................................... Biomedical Research Journal of Clinical Sleep Medicine ''Parasympathetic activity is reduced during slow-wave sleep, but not resting wakefulness, in patients with CFS'' by Fatt et al. 24 patients and 24 healthy controls tested during sleep with EEG and heart rate variability. Differences in sleep architecture were found. The abstract concludes 'Autonomic hypervigilance during the deeper, recuperative stages of sleep is associated with poor quality sleep and self-reported wellbeing.' Abstract here Thread here Preprint ''Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS'' by Bragée et al. In a study of patients from a Swedish tertiary clinic for severe ME sufferers, previous patients were recalled for testing for hypermobility, intracranial hypertension and obstruction in the foramen magnum by cerebellar tonsils. Higher rates for each of these were found than reported in the general population, though there was no control group, and this patient group may not be representative of the ME population. Preprint here Thread here F1000 Research Review article ''Understanding neuromuscular disorders in CFS'' by Jammes et al. The authors look at possible mechanisms of central and peripheral fatigue and hypothesise that heat shock proteins may be significant. Article here Thread here ......................................... Other research Oxidative Medicine and Cellular Longevity ''Modification of Immunological Parameters, Oxidative Stress Markers, Mood Symptoms, and Well-Being Status in CFS Patients after Probiotic Intake: Observations from a Pilot Study'' by Venturini et al. 13 patients, 4 dropped out and 1 had a symptom flare up. 8 week pilot study. No clear indication of what probiotics were used. Article here Thread here Pharmacovigilance and Pharmacoepidemiology ''The Effect of Curcumin in Patients with CFS/ME Disparate Responses in Different Disease Severities'' by van Campen et al. ME patients (Fukuda diagnosis) given curcumin capsules for 8 weeks in an open label study with subjective outcome measures and high drop out rate, found little effect. Paper here Thread here Journal of the International Neuropsychological Society "Prevalence and Treatment of CFS/ME and Co-morbid Severe Health Anxiety" by Daniels et al. The research team of Jo Daniels reports that approximately 40% of the ME/CFS patients studied experienced significant levels of anxiety. Forum members, however, have raised concerns about the validity of the anxiety questionnaires used in this study. Article here Thread here NTNU Open "Is CFS related to a crash of the brain attention mechanism - Hypervigilance correlates with fatigue and pain scales among individuals with CFS" by Minani CM. In this master thesis, Norwegian researcher Camilla Marylene Minani reports to have used a visual continuous performance task to study sustained arousal in a sample of 42 ME/CFS patients. Based on measurements of brain responses to stimuli during the task, the abstract claims that ME/CFS is associated with hyper-vigilance, delayed motor response and reduced error-detection resources. Article here Thread here .......................... Survey UK ME/CFS Biomedical Partnership (see above news item) A very brief survey on selection criteria to be used for the planned GWAS. Closing date 10th December, 5pm. Open to all. Thread with link to survey here ......................... S4ME social media: Facebook, Twitter and You Tube
