This thread has a Science for ME News In Brief post for each week in August 2019 written by @Trish and @Kalliope. Scroll down to find this week's news.
Week beginning 5th August 2019 Severe ME Week and Severe ME Day 8th August On a day to raise awareness of severe ME, organisations and individuals around the world have published articles and patients' stories. Below are some examples. More are listed and linked on the thread. Thread here MEAction "Today, we honor and remember those with severe M.E." The article contains some of the stories the patient community has submitted about what it's like to live with severe ME. Article here Emerge Australia gives information about its severe ME day campaign. Article here #MillionsMissing Germany published a new video in honor of Severe ME Day. It features (among others) a person with severe ME, Dr Bupesh Prusty from Würzburg university and the #MillionsMissing protest in Munich. Thread with link here USA Open Medicine Foundation ''A message from Whitney on Severe ME Day'' Whitney Dafoe, who has very severe ME, has communicated a short message of support to other severe ME sufferers. Article here UK ME Association ''Press release: Severe ME Day - M.E. sufferers hit out at "humiliating" DWP benefit assessments''. Expresses concern over the very difficult process to obtain benefits and how this can make patients deteriorate even further. Presents four severe ME patients and their struggle with the system. Press release here The ME Show Gary Burgess has made a special podcast episode for Severe ME Week. It includes an interview with severe ME patient and blogger Jo Moss (A Journey Through the Fog) and with the ME Association Welfare Rights Adviser Ann Innes, who offers insight and some advice on the process of obtaining benefits. Podcast episode here ME Association guest blogs: "Severe ME Day: A Call to Act with Truth and Integrity" Greg Crowhurst looks back on a 26 year long fight for patients with severe ME and concludes: "despite all our best efforts, despite all the deaths, nothing has happened in my view to demonstrably change the situation for the better". Guest blog here "Severe ME Day: Life in a Nursing Home, Light Sensitivity and Very Severe M.E." Under the pseudonym Eira Stuart, a severe ME patient tells about the added trauma health care personel without knowledge about severe ME can bring to an already very vulnerable situation. Guest blog here ''My daughter and the pervasive dangers of PACE in paediatric M.E.'' by Adam Johnson. A chillingly distressing account of the mistreatment of a girl with severe M.E. and her family by health and social services in the UK. Article here Thread here "There's no point in me having a Netflix subscription or an Audible account" Anna Wood gives a good personal description of cognitive symptoms that come with ME and the big limitations they bring. Article here Thread here .................................................... Articles, blogs, videos... Massachusetts ME / CFS & FM Association reports that Frontiers Spotlight Award candidates include the 'Advances in ME/CFS Research and Clinical Care' research topic. The winning team of topic editors receives US $100,000 to organize an international scientific conference on the theme of their successful research topic. Reader interest (clicks, downloads and shares) influence the decision. Thread with details here SCOPE The disability equality charity in England and Wales, SCOPE, has provided a Q&A about ME with Dr. Charles Shepherd, medical advisor of the ME Association. Article here Thread here The Guardian’s Science Weekly podcast and the Cochrane review On 08/08/2019 the Guardian’s Science Weekly podcast published an update of their episode titled: “What role should the public play in science?” The podcast was aired on November 2018 and gave the impression that Cochrane was giving in to pressure from activists to withdraw its review on exercise therapy for ME/CFS. The recent update seems to admit that this narrative was incorrect as details of the complaint to Cochrane “have been made public and they show that it was based in science.” Michiel Tack wrote a blog post summarizing these recent events. Podcast here Thread here, Blog here ....................................... Biomedical Research Nature - Scientific Reports ''Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test'' by Newton, Morton, et al. The mitochondrial energy score (MES) protocol, developed by the Myhill group, is marketed as a diagnostic test for CFS/ME. This study attempted to replicate the test and found no difference from healthy controls. They also tested it on healthy samples stored for 24 hours and found variable results that might account for the apparent results in Dr Myhill's original study. Conclusion: The test doesn't work. Paper here Thread here ............................................... Biomedical review and hypothesis articles Diagnostics ''ME/CFS: A comprehensive review'' by Rivera, Lidbury et al. This long article takes a detailed look at what is known about the pathophysiology of ME and suggests a 'three pillars' hypothesis - neurological, immunological and endocrine. They also discuss the lack of effective treatments, lack of a biomarker, and the need for more research. Article here Thread here Diagnostics ''Pathological Mechanisms underlying ME/CFS'' by Missailidis et al. This article outlines the symptoms across multiple body systems and findings of disturbances in multiple biomedical pathways and shifts in metabolism. The authors suggest these point to an underlying molecular pathology reflecting a far-reaching homeostatic shift. A variety of triggers may initiate body-wide pathological cascades with similar outcomes, and stratification may help diagnostic tests to be found. Article here Thread here Frontiers in Immunology Review article: ''Fatigue, Sleep, and Autoimmune and Related Disorders'' by Zielinski, Systrom and Rose. Long article, includes CFS in list of conditions that cause profound fatigue. From the abstract: ''This review describes how inflammation and the central nervous system contribute to fatigue and suggests potential mechanisms involved in fatigue that are likely exhibited in autoimmune and related diseases.'' Article here Thread here ............................................... Psychosocial research and review Social Science and Medicine ''Relationship satisfaction, communication self-efficacy, and CFS-related fatigue'' by Milrad et al. Questionnaire based research concludes: ''Results highlight the importance of considering depression and communication-related factors when examining the effects of relationship satisfaction on CFS symptoms such as fatigue.'' Paper here Thread here Journal of Adolescence ''Depressive symptoms at age 9–13 and chronic disabling fatigue at age 16: A longitudinal study'' by Collin, Crawley et al. Questionnaire study of data from a population longitudinal study did not find an association between depression in young adolescents and later chronic disabling fatigue measured by the Chalder Fatigue Questionnaire once the confounding effect of ongoing depression was removed. Article here Thread here Journal of Child Health Care ''Management of CFS/ME in a pediatric population: A scoping review'' by Collard et al. A literature review found 29 papers including nutritional, exercise and psychosocial factors in treating children with CFS/ME. Repeats without caveat conclusions from poor quality studies that exercise and multifaceted treatments including CBT, LP etc. are helpful. Not a recommendation. Article here Thread here ........................................ Conferences USA - Stanford Symposium 3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019. It will be live-streamed free. Details including signing up here Thread here UK - Invest in ME International ME conference week, 27 - 30 May 2020. You can sign up to their newsletter. IiME information here Thread here ....................................... Action UK ME Association ''Website Survey: Illness Severity and Definitions''. Dr Shepherd is interested in feedback on the NICE guidelines current 3 categories of severity, and suggests 4 categories would be better, adding very severe. Comments invited on MEA social media. The monthly survey asks your current severity. Article here Survey here Thread here ............................................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 12th August 2019 News Emerge Australia ''Australian ME/CFS biobank awarded to research team which includes Emerge Australia!'' The Mason Foundation has awarded $1 million to set up an ME/CFS biobank and patient registry, and to use it to research ME. The Age and other newspapers have covered this with a good article including patient experiences and information about the biobank plans. See thread for links. Article with details of the organisations involved here Thread here ................................................... Trial By Error by David Tuller A Stupid Article in The Guardian Dr. Tuller comments on the Guardian article from last month where Prof. Sharpe was quoted describing criticism of the PACE trial as abuse. Tuller writes that Sharpe "once again moved the goalposts and is engaged in post-hoc reframing and reinterpretation of the PACE trial". Article here Thread here ..................................................... Articles, web pages, videos, blogs... Norway YouTube video from the Norwegian ME Association where psychologist Ketil Jakobsen and paediatric neurologist Kristian Sommerfelt talk about children and adolescents with ME. Thread with video and English summary here UK The Sun: "Invisible illness. The 5 signs your constant tiredness is actually chronic fatigue syndrome - as 90% of cases are missed". An article about CFS/ME with a list of some of the typical symptoms and statements from Dr. Sarah Jarvis (Patient.info), Dr. Charles Shepherd (The ME Association) and Sonya Chowdhury (Action for ME). Article here Thread here New Zealand M.E. Awareness NZ has launched its own web site containing information on ME, diagnostic criteria, management strategies, resources and NZ specific support, advocacy and research. Web site here Thread here Columbia University The Center for Solutions for ME/CFS at Columbia University launches "Ask Our Researchers - Video Q&A Series". First video is Dr. Oliver Fiehn answering how reliable metabolic findings are and describing NIH work on standardising results so they can be compared across different labs. Thread with video here The ME Association Very Severe ME: It's Time for Something New! The first guest blog in a series about very severe ME by nurse and long time carer Greg Crowhurst. He describes the devastating every day life of him and his wife who suffers from very severe ME. He says: "It is surely time for the creation of an appropriate medical pathway that honours the person and their disease. We need something new!". Article here Thread here .................................................. Biomedical research The Myhill ATP profiles test. Dr Sara Myhill and Dr John McLaren have responded to the article by Tomas et al. which suggested that the ATP profiles test they have developed practice is unreliable. Myhill and McLaren emphasize that the test has “never been presented as a diagnostic test for CFS/ME.” Regarding the technical details, Dr. McLaren says he finds it strange that no significant differences were found between fresh and frozen cells, which is at odds with what he and other scientists have found while exploring the test. Their full response can be read here Thread here Frontiers in Immunology "Antibodies to Human Herpesviruses in ME/CFS Patients" by Blomberg et al. The research team of the late Jonas Blomberg reports that immunoglobulin G reactivity to human herpesviruses was similar between ME/CFS patients and controls, suggesting similar exposure to these viruses. Minor relative differences, however, were found in antibody reactivities. The authors speculate that the immune system of some ME/CFS patients may interact differently to these ubiquitous herpesviruses than the immune system of healthy controls. Article here Thread here .................................................. Psychosocial research Scandinavian Journal of Public Health “Prevalence of functional somatic syndromes and bodily distress syndrome in the Danish population: the DanFunD study” by Peterson et al. In this study, the research team of Per Fink reports a prevalence for CFS of 8.6%, which is more than 20 times the rate other epidemiological studies have found. Their estimate used scores on the Chalder Fatigue Questionnaire instead of established diagnostic criteria for CFS. According to the authors, their study indicates that functional somatic syndromes and bodily distress syndrome are prevalent in the adult Danish population. Article here Thread here ............................................ Coming events UK: Action for M.E. 2019 AGM and Conference Tuesday Oct. 15th in London. Program includes presentation of their survey with over 4,000 respondents, panel discussion, workshop and Action for M.E. Annual General Meeting. Registration here Thread here Australia: emerge 2019 Annual General Meeting The meeting will be held at Ross House in Melbourne Nov. 21st. Announcement and agenda here Thread here ......................................... Fundraising Hope 4 ME and Fibro Northern Ireland are fundraising for a small exploratory research project at Manchester University that will use interviews with people with ME: '' Exploring Trauma & Distressing Experiences Following Medical Encounters''. Details here Thread here .......................................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 19th August 2019 News Canada Minister of Health, Ginette Petitpas Taylor announced on Thursday that the Government of Canada will be investing $1.4M in a national network for biomedical research into ME. The announcement was made at the Sainte-Justine University Hospital Research Centre in Montreal, where the network will be led by Dr Alain Moreau. Karim Khan, Scientific Director of the CIHR Institute of Musculoskeletal Health & Arthritis (IMHA) described ME as real and often devastating, and urged clinicians to validate patients' experience, ''time to take the insult out of the injury'', and acknowledge how little they can do to help. Some patient advocates were present. Christiane Garcia of Action CIND gave a moving account of living with severe ME. News release here Thread including links to video and media coverage here USA NIH The National Institute of Neurological Disorders and Stroke has published ''Responses to Request for Information: Soliciting Input on How Best to Advance ME/CFS Research''. The responses are collated and published as PDF documents under topics including research needs and barriers. Link to responses here Thread here ........................... Trial By Error by David Tuller My Interview with Melbourne's Dr Don Lewis An interview Dr Tuller did last year with Dr Lewis who recently passed away. Dr. Lewis shared from his over 30 years clinical experience with ME patients. Article here Thread here Joan McParland’s Lightning Process Experience Prompted by a You Tube advertisement for LP, and reminding readers of the ADC journal's puzzling decision to allow the authors of the SMILE trial of LP to write a lengthy clarification rather than retracting the study, David Tuller has reprinted a patient's negative experience of LP. Joan McPartland describes LP as an expensive sales pitch of positive thinking, and the requirement to say you are cured, with patients blamed if they don't recover. Neither she nor any of her group recovered. Article here Thread here .............................. Articles, podcasts, blogs... Finland Article from the national public broadcasting company, Yle, describing the situation of ME patients in Finland. There are currently no national guidelines for assessment and treatment, little knowledge in general and disagreement among doctors about the best approach. Article here Thread with summary of article here Podcast It's not all about ME series episode 25. Paddy interviews Canadian author Jayne Barnard who has had ME for many years and whose first published novel features a character with ME. Jayne talks about her strategies for coping with living with ME, including day/night reversal, eating problems related to Sjogrens syndrome, and coping with expectations. Duration 1:15 hours. Podcast link here Thread here The Chronic Elephant blog The blog reviews six books that can help patients cope with ME. It also includes a link to the Calibre audio library service, subscription-free service providing audiobooks to anyone with "sight problems, dyslexia or other disabilities, who cannot read print." Blog post here Thread here ................................. Research News ME Association ''Establishing Protocols to Assess Mitochondrial Function in ME/CFS'' by Dr Karl Morten. ''This new blog follows the publication recently of a key study from researchers in Oxford and Newcastle who failed in their attempt to validate the Acumen test which is being used commercially to determine mitochondrial function and then treatment in ME/CFS.'' (see last 2 weeks' News). Forum member Simon M. has also reviewed the research. Dr Morten will be interviewed for S4ME in September. MEA article here Simon M. post here Thread here UK ME/CFS Biobank An update from the Cure ME team that samples have been sent from the biobank to Dr Westermeier in Austria. His project is titled “Role of Sirt1/NOS axis in vascular and immune homeostasis: A missing piece in the ME/CFS puzzle?” Thread here UK The ME Research UK website reports on an upcoming pilot study by Oxford Brookes University. The study will look at sensory processing and cognitive function in people with ME. Article here Thread here NIH 12 videos with talks from the NIH 2019 Conference "Accelerating Research on ME & CFS" from April are now available on YouTube. Videos here Thread here ............................... Psychosocial Research Musculoskeletal Care ''Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue'' by Antcliff et al. UK survey of therapists working in NHS pain and fatigue clinics found most used 'activity pacing' which included graded increases in activity, with a biopsychosocial model for 'rehabilitation' and aims to use this as a basis for producing guidance to healthcare professionals. CFS was included as a 'somatic syndrome'. Not a recommendation. Article here Thread here ............................ Advocacy New Zealand M.E. Awareness NZ has teamed up with Dr Richard Medlicott, current Medical Director of the Royal NZ College of GP's in order to raise money for evidence-based ME education for GP's. Fundraiser here Thread here USA ME Action has launched a medical education campaign called Postcards to Doctors. Handwritten postcards are sent to doctors to encourage them to take a CME (Continuing Medical Education) course based on Unrest film. ME Action article here Thread here ........................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 26th August 2019 Politics In Germany, the federal government has responded to several questions about ME/CFS, submitted by MP’s from the fraction Bündnis 90/Die Grünen. The government response indicates that very few Germans are receiving disability benefits for ME/CFS and that the federal government is currently not funding any research projects on ME/CFS. Regarding the lack of awareness and specialized care for ME/CFS, the response emphasized that it is not the task of the Federal Government to assess and evaluate the medical profession's knowledge of individual diseases. Government response here Thread here UK - Scotland #MEAction report that they have met with the the Scottish Health Council this week to begin a gathering views exercise and with the Scottish Chief Science Office to discuss research in Scotland. Also the health secretary has asked the Scottish Public Health Network to update their 2011 needs assessment for ME/CFS. Thread here ........................................ UK NICE guidelines Call for evidence ''We invite registered stakeholders, and other individuals and organisations with an interest to send any relevant published or unpublished information''. Deadline 4th October. Research evidence is required on a wide range of aspects of management, monitoring and outcomes, and the experiences of people who have had interventions including surveys. Details here Thread here The contract for collecting information from young people with ME to help inform the NICE guideline has been awarded to Professor Helen Dawes and her team at Oxford Brookes University in collaboration with Action for M.E. Thread here #MEAction UK ''NICE drag their feet on stopping the harm caused by GET and CBT''. An update on efforts to get NICE to suspend the GET CBT recommendations from the current guideline. #MEAction are collecting stories of patient currently being harmed by these therapies. Article here Thread here ................................................ Trial by Error by David Tuller An Open Letter to Dr Godlee about BMJ's Ethically Bankrupt Actions Open letter signed by 55 academics, about the "ethically bankrupt" decisions of Fiona Godlee, editorial director of the BMJ, in allowing a study in the journal Archives of Disease in Childhood to still claim that LP for children with ME/CFS is effective despite its acknowledge serious issues. Letter here Thread here Lead Author of Cochrane’s New Bias Guideline is LP Study Co-Author Prof. Jonathan Sterne is corresponding author on ''RoB 2: a revised tool for assessing risk of bias in randomised trials'' published by BMJ. He has also co-authored 11 studies with Prof. Esther Crawley, including the problematic SMILE and school absence studies. Dr Tuller outlines the problems with these two studies, and asks a series of questions Prof. Sterne should answer, and raises concern about his role in this new and problematic Cochrane guideline. Cochrane guideline here Tuller article here Thread here ................................................ Video PACE trial series by Broken Battery (forum member Adam pwme) Part 3 Diagnostic Criteria This is the third part of an excellent and easily accessible series of video compilations about the PACE trial. This video focuses on the cardinal symptom of ME, PEM (Post Exertional Malaise), not being mandatory for the inclusion of patients in the trial. Duration 4.13 min. Thread with video here ................................................. Research recruiting participants USA "Analysis of Post-exertional Malaise Using a Two-day CPET in People With ME/CFS" This ongoing research is still recruiting participants (ME/CFS patients and healthy controls) at three different sites: Ithaca, NY; New York, NY; and Los Angeles, CA. A series of two cardiopulmonary exercise tests (CPETs) will be performed over two days. More details here Thread here ............................................... Biomedical research Cardiopulmonary Physical Therapy Journal ''Reproducibility of Measurements Obtained During Cardiopulmonary Exercise Testing in Individuals With Fatiguing Health Conditions. A Case Series'' by Larson et al. The Workwell team did a pilot study 2 day cardiopulmonary exercise tests with 6 people (2 healthy, 2 ME, 1 MS, 1 HIV), and found differences between the ME patients and others. Conclusion: 'Measurements during CPET for individual patients may relate to potential condition-specific deficits in cardiac, pulmonary, and metabolic functioning.' Paper here Thread here JDR Clinical and Translational Research ''Brain Responses in CFS and TMD to Autonomic Challenges: An Exploratory fMRI Study'' by Allison et al. Patients with CFS with and without temporomandibular disorders were compared with controls and some differences found. ''Our results suggest that increased activity in the cortical and subcortical regions observed during autonomic challenges may be modulated by fatigue and pain.'' Paper here Thread here Two systematic reviews of cytokines in ME/CFS BMC Neurology ''A systematic review of cytokines in CFS/ME/SEID'', by Corbitt et al. 15 moderate quality observational case control studies were found that studied cytokines in body fluids, mostly blood serum. Results were inconclusive on whether cytokines play any definitive role in CFS/ME/SEID. The authors recommend that the search for diagnostic tests and treatments continue in a range of research fields. Article here Thread here Neuroscience and Biobehavioral Reviews ''Inflammatory proteins are altered in chronic fatigue syndrome – a systematic review and meta-analysis'' by Strawbridge et al. 42 studies meta-analysed, testing 20 proteins between patients with CFS and controls, found higher levels than controls for 5 cytokines. Concludes results are heterogeneous, but provide some support for an inflammatory role in CFS. Article here (abstract only) Thread here ................................................. Coming events USA - The NIH ME/CFS working group will broadcast their report to NINDS on Sept. 4 at 1:20 pm EDT (10:20 am PDT, 6:20 pm BST, 3:20 am Australian EST). This report is part of the NINDS Advisory Council meeting planned for Sept. 4-5. Videocast here Meeting agenda here Thread here USA - Stanford Symposium 3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019. It will be live-streamed free. Details including signing up here Thread here ..................................................... S4ME social media: Facebook, Twitter and You Tube (Edited to correct small typos)
