Science for ME - News in Brief September 2018 This thread has a post for each week in September 2018. Scroll down to find this week's news.
Week beginning 3rd September 2018 News and action alert USA - Chronic Fatigue Syndrome Advisory Committee The US CFSAC operates under a charter which was up for renewal. The Secretary has decided not to renew the charter and CFSAC sunsetted as of September 5. Thread here #MEAction ''HHS Secretary Kills CFSAC'' Article here #MEAction ''How to protest HHS with #MEAction'' Article here Occupy ME blog by Jennie Spotila: ''Rest In Power, CFSAC'' Includes quotes from prominent members of the CFSAC. Article here Solve ME/CFS Initiative is calling on US people to call on their representatives to demand that Congress create a federal ME/CFS Advisory Committee. Article here Video here .................................................................... Other news from around the world Norway The thread 'News from Scandinavia' includes several recent items on activity in Norway including a petition. Thread here from post #290. USA #MEAction: ''NIH Update: Collins Will Meet With #MEAction Representatives!'' #MEAction has secured a meeting with Dr. Francis Collins, Director of the National Institutes of Health (NIH), to discuss demands sent to him in a letter in May. Date to be arranged. Article here Thread here UK NICE is seeking committee members for the ME/CFS guideline group including GP, physicians, nurse. Closing date 26th September. Some posts, including patient representatives, have already been advertised and interviewed. Details here Thread here Scotland The Liberal Democrat conference has passed a motion in support of removal of GET/CBT treatments and increasing biomedical research funding for ME/CFS. #MEAction article here Thread here ............................................................. In the media Holland A journalist, Bastiaan Hetebrij, has produced a series of articles about ME published in the online publication De Monitor. It includes support for Professor Michael Sharpe. Not a recommendation. Articles here ...Thread here ... Sharpe Thread here Criticism of the PACE trial by psychologist Daniël Lakens. Thread here .............................................................. Trial by Error by David Tuller ''The Cochrane Controversy'' Cochrane produces respected systematic reviews of medical treatments, but places CFS in the mental disorders group and its reviews of exercise treatments rely on flawed trials including PACE and excludes objective outcome measures. A more recent review has not been published. Tuller explains the history, problems, influence of the reviews, and what should happen next. Article here Thread here ...................................................................... Articles and blogs ME Advocates Ireland ''Complaint Report offers hope for those living with ME in Ireland'' A long and harrowing article by Christine Fenton who has very severe ME about the lack of medical and social care she has experienced for many years, and the outcome of an HSE investigation. Article here Thread here USA Ithica College ''Tireless Work on Chronic Fatigue Syndrome'' by Kerry Regan. IC professor Betsy Keller is among the leaders of Cornell University's participation in and NIH funded 5 year study including pre and post exercise testing. Article here Thread here ..................................................................... Research - Diagnostics and definitions Frontiers in Pediatrics ''Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome'' by Staci Stevens et al. (Workwell Foundation). ''Conclusions: Basic concepts of CPET are summarized, and special considerations for performing CPET on ME/CFS patients are detailed to ensure a valid outcome. The 2-day CPET methodology is outlined, and the utility of the procedure is discussed for assessment of functional capacity and exertion intolerance in ME/CFS.'' Article here PDF here Thread here Diagostics ''Myalgic Encephalomyelitis (ME) or What? An Operational Definition'' by Frank Twisk. Discusses the key features of ME and how they distinguish it from definitions of CFS. Article here Thread here ....................................................................... Psychosocial Research Journal of Health Psychology ''Confirmatory factor analysis of an ME and CFS stigma scale'' by Termann, Jason et al. From the abstract: ''This study adapted a chronic illness stigma scale and explored its psychometric properties. ...Participants endorsed high levels of stigma, estrangement, and disclosure.'' Paper here Thread here BMJ Paediatrics Open ''Using the internet to cope with CFS/ME in adolescence: a qualitative study'' by Brigden, Crawley et al. Very small study based on interviews. Young pwME found patient led sites and forums helpful socially and for information. Paper here Thread here ...................................................................... Simon Wessely speaks and continues to malign people with ME. He claims a third will recover with a bit of therapy and light exercise. Not a recommendation. Royal Society of Medicine (UK) Podcast here Thread here The Sheffield Star (UK local paper) Article here Thread here ...................................................................... Edited to correct the item about Norway.
Week beginning 10th September 2018 News USA NIH National Advisory Neurological Disorders and Stroke (NANDS) invited ME/CFS community participation in a meeting on September 13th. SMCI article here Thread here USA CDC funding for ME/CFS to continue in 2019. SMCI article here Thread here USA on September 14th #MEAction organised a virtual protest against the closure of the Chronic Fatigue Syndrome Advisory Committee (CFSAC). #MEAction article here Thread here Norway The Kavli Trust is continuing its long cooperation with the research group for ME/CFS at Haukeland University Hospital (Fluge and Mella's team), supporting further biomedical research with NOK 4.72 million in 2018 and 2019 (around $590,000). Thread here post #311 ............................................................... In the media Huff Post ''Netflix's 'Afflicted' And The Constant Misunderstanding Around Chronic Illness'' by Jenna Birch. Long article describes her own experience with Fibromyalgia and several others with chronic ill understood or misdiagnosed illnesses and a statement from the executive producer of Afflicted. Article here Thread here post #277 The Californian ''Californian editor publishes book - Vidhima Shetty sheds light on the little-known disease of Chronic Fatigue Syndrome''. Sympathetic article. The book, 'An Adolescents' Guide to ME/CFS' started when she wrote article about her neighbour who has severe ME/CFS. Proceeds of sale to OMF. Article here Thread here The Conversation ''Fibromyalgia: researchers trying to fathom the causes of this painful condition'' by Prof. Kevin Davies et al. Includes a brief description of their current research into FM and CFS using tilt table testing and MRI brain scans. Article here Thread here .............................................................. Articles, webinar, talk USA Dr. Bruce Levin spoke at Columbia University: "How NOT To Conduct A Randomized Clinical Trial" about the PACE trial. Article here ... PDF of the lecture here ... Thread here SMCI webinar ''Appropriately and Accurately Assessing Symptoms in Patients with ME'' by Leonard Jason held on 13th September is now available on YouTube. Webinar here Thread here Medical Republic (Australia) ''Guidelines for ME/CFS outdated and dangerous'' by medical writer Felicity Nelson. Article here Thread here IiMER article in support of the petition against BPS treatments in Norway. Article here ... Petition here ... Thread here ............................................................ And the misinformation continues Oxford University Neuroscience stoops to a new low with a short article about CFS/ME treatment full of misinformation including a claim that 73% improve significantly with CBT, and with no mention of PACE. Article here Thread here Bristol University Bristol Randomised Trials Collaboration - boasts of its high quality trials that bring in lots of money for the University, including FITNET and MAGENTA. Article here Thread here .................................................................. Biomedical Research Int. J. Mol. Sci. Review Article ''Unraveling the Molecular Determinants of Manual Therapy: An Approach to Integrative Therapeutics for the Treatment of Fibromyalgia and CFS/ME'' by Espejo et al. Article here Thread here PLOS ONE ''CFS patients have alterations in their oral microbiome composition and function'' by Taiwu Wang et al. Paper here Thread here .................................................................. Conferences this week Northern Ireland Hope 4 ME & Fibro conference, 17th September. Thread here UK CMRC Conference 19th & 20th September in Bristol. Thread here ........................................................... Coming events UK Royal College of GP's conference 4-6 October. Forward ME charities will have a stand at the conference and will run a workshop led by doctors Shepherd, Purdie and Speight. They have also written an article for the GP's magazine. Thread here .........................................................
Week beginning 17th September 2018 Trial By Error by David Tuller ''So What's Happening with the MAGENTA Trial?'' An ongoing trial of GET versus activity management in children with CFS run by Esther Crawley et al. Problems include ethical approval given to include the 100 patient 'feasibility trial' data in the full trial despite the primary outcome measure only being specified after the feasibility trial. Article here Thread here ''Bruce Levin on 'How Not to Conduct a Randomized Clinical Trial'.'' David Tuller describes consulting Professor Levin, a biostatistician at Columbia University, about PACE during his early investigations. He links to the PDF of Levin's recent talk about what was wrong with the PACE trial. Article here Thread here ................................................................... Useful resources ME/CFS in children and young people Voices from the Shadows: 2 new videos by Dr Nigel Speight and Prof Peter Rowe Part 1. Diagnosis of paediatric ME/CFS Part 2. Severe ME/CFS and management of paediatric ME/CFS The link also provides a list of key resources, reports and information for paediatric ME/CFS. Videos here Thread here ............................................................ In the media Los Angeles Times ''Netflix is televising prejudice against the chronically ill'' by Julie Rehmeyer. The Guardian ''Sorry, Netflix: we don't need another freak show'' by Frances Ryan. LA Times article here Guardian article here Thread here post #287 ............................................................ News Australia Adam Bandt MP, Deputy leader of the Green Party speaks up for people with ME. Thread here Canada Health minister has no plans to address ME. Thread here Cochrane is in turmoil with an expulsion and resignations from it board and concerns about the quality of its reviews. Stat article here Thread here UK CMRC Conference was held on 19th & 20th September. Videos of some of the talks will be available on line this week. Thread here ........................................................... Articles, books, blogs etc. Book ''Classic Pacing for a Better Life with ME'' by Ingebjørg Midsem Dahl from Norway who has ME. Now available in English translation. Thread here Blog article ''Psychology – Science or Delusion?'' by David Marks. Quote: ''The shared belief of the vast majority of psychologists that they are scientists, when all of the evidence suggests that this can’t be true, is a form of professional ‘mass hysteria’.'' Short article includes ME/CFS and PACE. Article here Thread here ............................................................. Psychosocial Research BMJ Open - Neurology ''Defining the prevalence and symptom burden of those with self-reported severe CFS/ME: a two-phase community pilot study in the North East of England'' by Strassheim et al. Small study. Concludes limitations on severe ME patients' ability to take part must be considered when planning research. Paper here Thread here ............................................................. Causes for concern UK the MEA which supports good science and recognises that GET/CBT have been shown not to work, posts without caveat on social media a newspaper article claiming yoga and LP help pwME. Thread here USA 4th Columbia Psychosomatics Conference - Per Fink, who diagnoses ME as psychosomatic, will speak at the conference on October 20-21. Thread here ............................................................... Coming events this week OMF Working group meeting 26th to 28th September. Over 50 scientists researching ME/CFS will meet to discuss their work and build collaboration. Thread here CFS Research Center at Stanford Second Annual Community Symposium on the Molecular Basis of ME/CFS is on 29th September. It will be live streamed. Details here Thread here ............................................................
Week beginning 24th September 2018 In the media Germany Excellent radio feature and linked article (in German) broadcast on July 7th. Interviewees included international doctors and scientists and people from the German ME organisations. Article and radio link here Thread here Northern Ireland Excellent TV interview with Dr Jose Montoya. Thread here Video link in post #8 Norway Lightning Process (LP) coach with letter to the editor about LP as ME treatment. Contains patient blaming and propaganda for alternative treatments. Article here (google translated) Thread here Australia The Age newspaper article: ''Chronic fatigue syndrome - the 'missing people' enigma''. Good article describing one woman's experience of ME and the problems with current treatment. Article here Thread here ............................................................... Articles, blogs, interviews, letters Blog article ''The PACE Trial: A Catalogue of Errors'' by David Marks, editor of the Journal of Health Psychology that published a special issue on PACE. Describes the problems with PACE and lists 14 errors. Excellent article. Article here Thread here Interview ''David "PACEman" Tuller in Amsterdam 2018'' In a 25 minute interview David talks about his work on ME/CFS particularly the flaws shared by the PACE trial and all the other CBT/GET trials. Video here Thread here UK MEA ''Mail on Sunday: Ask Dr Ellie Cannon – Recently diagnosed with M.E. How long must I put up with this fatigue?'' Very good letter to Dr Cannon who had written a short piece on ME in the newspaper. MEA Article here Thread here Trial By Error by David Tuller ''The Open Letter to Netflix about Afflicted'' David written about, reproduced and signed the #MEAction letter to the producers of Afflicted. Article and letter here Petition here Thread here Berkeley Wellness ''When Medical Symptoms Are Dismissed as "All in Your Head" David Tuller interviews Maya Dusenbery about her book ''Doing Harm - The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick''. Article here Thread here Video Interview Dr Susan Levine interviewed by Llewellyn King of ME/CFS Alert. 26 minutes. Dr Levine has been treating patients with ME/CFS in New York for may years. She described briefly some of the treatments she uses and the new collaborations she is involved with to promote better research, clinician interaction and medical education. Video here Thread here ME/CFS Research Review blog by Simon McGrath. ''A brightening future: the state of ME/CFS research''. @Simon M describes reasons to be cheerful - promising findings and the research field getting stronger. Article here Thread here ............................................................ Biomedical research Brain, Behaviour and Immunity ''Brain glial activation in fibromyalgia – A multi-site positron emission tomography investigation'' by Albrecht et al. Note - this is a fibromyalgia study, but may have relevance given the current and recent brain studies carried out on ME/CFS patients. Paper here Article here Thread here ....................................................................... Psychosocial Research Emerge Australia Health and welfare survey of 600 Australians with ME/CFS. The 77 page report includes findings on time to diagnosis, key symptoms experienced and treatments which were useful. Report here Thread here School Nurse Research Article: ''School Nurses Can Improve the Lives of Students With ME/CFS'' by Friedman et al. Rejects BPS model, points to some biomedical research, and explains the school nurse's key role in educating others and ensuring appropriate support for pupils with ME/CFS. Article here Thread here Journal of the American Psychoanalytic Association ''Emotional Regulation in Women with CFS and Depression: Internal Representations and Adaptive Defenses'' by Bram et al. Not a recommendation. Paper here Thread here ......................................................................... CFS Research Center at Stanford Symposium was live streamed on Saturday. Keynote Address: Oystein Fluge. 10 other speakers included Jarred Younger on the brain, Robert Phair on his metabolic trap hypothesis, and Ron Davis on biomarkers. Videos will be made available on You Tube. OMF link here ... Agenda here ... Thread here from post #42 ......................................................................... Coming Events Northern Ireland ''The PACE Trial: 'One Of The Greatest Scandals Of The 21st Century'.'' 2nd October, 7-9pm. The event will be live streamed. Speakers David Tuller and Brian Hughes. Information here Thread here USA SMCI webinar ''Back to School Part 2: Individualized Education Plans (IEPs) for students with ME/CFS in Public Schools'' October 18th. Sign up here Thread here ...............................................................
