Week beginning 1st January 2018 An unusual amount of positive media attention this week. Independent: Time for Unrest: Why patients with ME are demanding justice A new film sheds light on a condition that is largely ignored. Nathalie Wright reports on the struggles patients face to be taken seriously by doctors. Excellent long article that exposes the damage done by BPS model and CBT/GET, Wessely and other psychiatrists, Insurance and DWP, PACE etc. Includes Unrest, Keith Geraghty, Ron Davis and the USA recognition that ME is a physical illness. Article here Thread here Nature: 3rd January 2018. A reboot for Chronic Fatigue Syndrome. Research into this debilitating disease has a rocky past. Now scientists may finally be finding their footing. By Amy Maxmen. Long article. Describes historical problems and recent increase in biomedical research. Highlights work of Jason, Montoya, Ron Davis, and David Tuller. Also increased funding by NIH and new directions in research. Conclusion - ME is at last being taken seriously. Article here Thread here BBC Stories: "I had it all - now I create a new world in a single room" Good sympathetic article. Prince's former art director, Michael Van Huffel has had ME for 10 years. It left him barely able to move. Now struggling financially, living in one room. Does art photography with tiny objects in his room. Article here Thread here Ms Magazine: Pain and Prejudice. By Julie Rehmeyer. Describes her experience with severe ME. Article here Thread here Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience by Tom Chivers. Good critical article. Writer interviewed Esther Crawley about the Smile Trial, Phil Parker, LP creator, Jonathan Edwards, Charles Shepherd and David Tuller as well as people who have done LP and describes what it involves. Article here Thread here David Tuller - Further blog posts about a published trial using school absences to recruit new CFS patients that does not seem to have correct ethical approval. Very detailed analysis. Thread here Jen Brea on Twitter - series of 26 tweets - an eloquent challenge to Esther Crawley for poor research and for claiming to speak for people with ME. Thread here Action: UK ME biobank fundraiser closing next week. Just giving page here Thread here MEA consulting members on research priorities. MEA link here Thread here Coming events later this month: S4ME Interview with Dr Jose Montoya to be recorded 16th January offline. Thread here NICE guideline stakeholder meeting on 16th January at which S4ME will be represented. Thread here Unrest - decision on whether it will go from Oscar shortlist to nomination. Unrest to be shown on PBS channel in USA on Monday 8th January. Thread here Edit to add: This is a read only thread. For explanation see here Edit to add: PDF version
Week beginning 8th January 2018 In the media: Nature When sickness interrupts science. Features Leonard Jason who has ME and other scientists with chronic illnesses. Relevant for anyone trying to work with a chronic illness. Article here Thread here New York Times: In my chronic illness I found a deeper meaning by Elliot Kukla. Helpful article on problems with diagnosis and learning to live with ME and other chronic conditions. Article here Thread here Responses to Nathalie Wright's article in the Independent last week Jen Brea on Twitter. Series of tweets praising and quoting from the article. Adds extra information on the effects of lack of funding and gaslighting of patients. Tweets collected here Thread here Simon Wessely Says he is misquoted and supports ME patients getting benefits. But see thread for quotes from Wessely contradicting this. Statement here Thread here ................................................ Biomedical Research and Researchers Derya Unutmaz Professor of Immunology and the Principal Investigator for The Jackson Laboratory ME/CFS Collaborative Research Center. Article interviewing Derya about his work on ME. Article here Thread here SMCI Data Registry. The Solve ME/CFS Initiative is in the final stages of constructing a new state-of-the-art patient registry platform. It will work in conjunction with the NIH funded Data centre. Preview here Thread here OMF Science Wednesday. Update on their plans for a Collaborative ME/CFS research centre and plan to publish their research. OMF site here Thread here .......................................................... Psychosocial research - critiques GETSET letters critical of published GETSET trial rejected by the Lancet. Thread here James Coyne on CBT study. Lengthy hard hitting blog post dissects multiple flaws in Dutch study of CBT for ME by Knoop et al. published in 2015. Study here Coyne's Blog here Thread here ................................................................. Conference Report CMRC Conference September 2017 Report now available on MEA website. 52 page pdf. Controversial items - Chairman's remarks and FITNET on its first year. Useful talks - Orthostatic Intolerance and Jose Montoya on research and treatment. Report here Videos here Thread here .............................................................. Action: NIH consultation on Common Data Elements, including definition of PEM, to use in future research. E-mail responses from patients invited. Deadline 31 January. NIH link here Thread here Unrest: Encouragement to post reviews on sites that may influence Oscar nominations. Independent Lens IMDB Thread here Letter to NICE: @Graham's letter to NICE has been finalised and will be sent on 16th January. You can add your signature to the letter. Letter here ...................................................... Coming events: Dr Jose Montoya , Live Webcast from Stanford, Jan 18th 7PM PST Stanford link Thread here Oscar documentary nominees will be announced on January 23rd. Unrest is on the shortlist. .................................................... In Memory of Anne Örtegren We mourn the loss of Anne Örtegren, greatly respected and much loved Swedish ME activist and severe ME sufferer. Thread here .................................................... Edit: PDF version here
Week beginning 15th January 2018 Unrest is now on Netflix in 190 countries in 20 languages. Oscar nominations will be announced on 23rd January. Thread here David Tuller A review of his first 6 months employed by Crowdfunding. Review here Thread here Trial by Error: Professor Crawley’s Bogus BuzzFeed Claims - 17th January 2018 Article here Thread here Medpage Today: "NIH Striving to Avoid False Hope in Chronic Fatigue" Interview with NIH director Francis Collins Article here Thread here ...................................................... Action NIH/CDC - Common data elements consultation. Is the proposed definition of PEM problematic? Poll open until 24th January. Discussion thread here Poll thread here Deadline for submission of comments 31st January. @Tom Kindlon has submitted a comment on the Chalder Fatigue Scale. Tom's submission thread here NICE Petition Appeal to NICE concerning the Guideline Committee for ME/CFS. You can sign the petition that supports the letter sent to Sir Andrew Dillon. Petition here Thread here PACE - Complaint to the GMC. Dr Sarah Myhill has submitted a complaint to the GMC about the PACE authors accusing them of fraud. Patients harmed by PACE style CBT or GET are encouraged to make submissions to the GMC in support (template letter supplied). GMC complaint letter here Thread here ......................................................... Advocacy Action for ME announce they are employing an advocate to ask the WHO and its member states take action to address the biomedical healthcare needs of people with M.E. AfME statement here Thread here ...................................................... NICE guidelines IiME letter to NICE requesting immediate withdrawal of CBT/GET recommendations from guidelines, and reply. Letters here Thread here NICE Stakeholder meeting was held on Tuesday 16th January. Thread includes reports or links to reports of several people who attended. Thread here Edit: PDF version here
Week beginning 22nd January 2018 News from around the world: Japan: The Japanese ME Association opposes national guidelines recommending GET. A film has been released, trailers available. Abstracts from an ME/CFS conference outline work on diagnostic criteria and neuroinflammation research. Association thread here Film thread here Conference thread here Sweden: Good coverage of ME/CFS on Swedish television. Thread here South Africa TV interview with Retha Viviers, founder of ME/CFS foundation S.A Interview here Thread here Scotland BBC Radio Scotland - 'ME the invisible disease' 28 minutes, featuring Charles Shepherd Broadcast 24th January, available 28 days in UK. BBC link here Thread here USA Unrest - Sadly Unrest did not make it from the shortlist of 15 to the 5 nominations. Thread here Another thread here Solve monthly newsletter Latest free newsletter includes interview with Nancy Klimas, and research updates. Solve link here Thread here Stanford ME/CFS Initiative - PEM Avoidance Toolkit. Mixed responses in thread discussion. Useful for newly diagnosed, but examples only include mild cases. Thread here ..................................................... Biomedical Research: Cerebral Blood Flow and Heart Rate Variability in CFS. Small Belgian study looks for relationship between these and pain modulation in CFS, finds none. Study abstract here Thread here Eukaryotes in the gut microbiota in ME/CFS. Hanson, Levine et al. Small pilot study finds no significant differences from healthy controls. Paper here Thread here Elevations of ventricular lactate levels occur in both CFS and fibromyalgia Study published in 2017 reviewed by Solve. May suggest mitochondrial energy production problems in the brain. Paper here Solve article here Thread here Autonomic Nervous system: MEA Summary Review: The dysfunctional autonomic nervous system in ME/CFS | 24 January 2018. Review of 2 recent studies and some management suggestions. PDF Review here MEA link here Thread here S4ME Q&A with Dr Montoya - @Andy interviews Dr Montoya, asking questions posed in advance by S4ME members. Video here Thread here ....................................................... Action Scotland - Unrest will be shown in the Scottish Parliament on Tuesday 30th January. e-mail your MSP to encourage them to attend. Thread here NIH/CDC Common Data Elements - Deadline for submissions 31st January. S4ME critique of Chalder Fatigue Scale has been submitted. Thread here ................................................... The Biopsychosocial model still dominates in the UK... and is provoking lively discussion on S4ME. Guidelines for clinicians at Kings College Hospital - Deary and Chalder Thread here Guidelines for Clinical commissioning in the UK for MUS (Medically Unexplained Symptoms) Thread here The international collaborative on fatigue following infection. Sounds good, but run by the likes of White, Crawley and Moss Morris. Thread includes discussion of open data. Thread here Bath hospital fatigue clinic continues to wreck children's health. Thread here And in Norway: A Biopsychosocial seminar is to be held at a Rehab centre for children in June 2018 Thread here Edit: PDF version here
