This thread contains a news post for each week in March 2018 .................................................................... Week beginning 26th February 2018 News from around the world UK Radio 5 Live program on ME featuring @Gary Burgess, journalist with ME, also Dr Julia Newton and Jen Brea. Wednesday 28th February, 1pm onwards. Thread here UK MEAction Analysis of minister’s response in Westminster Hall PACE debate. MEAction article here Thread here UK PACE trial Correspondence from the DWP for 2003 released. Thread here UK Forward ME Group minutes from meeting 7th February 2018. Minutes here Thread here UK - i News Opinion piece: "Cannabis law reforms would let chronically ill people like me live in less pain and more dignity" by ME patient Jason Reed. Article here Thread here Scandinavia Positive and negative news and media stories are posted and discussed on the thread 'News from Scandinavia'. Thread here Norway The Research Council of Norway: User involvement gave users real influence. Thread here The Norwegian Directorate of Health receives letter signed 308 parents - complaints about centre that uses BPS approach and harms children. Thread here Holland - ME/CVS Vereniging: shocking story about the (mal)treatment of an ME/CFS-patient. Translation into English from Dutch ME organisation, posted on Facebook. Thread here Canada - CBC article: 'Fibromyalgia/CFS patients fighting for awareness of career-ending illness.' Article here Thread here ............................................................... Research related news Trial by error: 'Our Exchange of Views with BMJ Open'. Tuller, Racaniello and others respond to BMJ Open's unsatisfactory reply to their letter about Crawley trial. Article and letter here Thread here Data sharing - The Journal of Health Psychology has announced a 1 year trial of a data sharing policy for trial it publishes that include quantitative data. De-identified data to be made available indefinitely to anyone for any purpose. Policy statement here Thread here NIH Version 1.0 of NINDS ME/CFS Common Data Elements now available Thread here USA SMCI National ME/CFS patient registry preparing to launch soon. Article here Thread here ........................................................... Action Canada, Ontario Millions Missing Canada 'Call to Action' for Ontario Residents re Task Force Recommendations for ME, FM & ES/MCS! Contact your MPP. Thread here ......................................................... Biomedical Research Journal of Translational Medicine 'Association of CFS with premature telomere attrition' (2018) Unger et al Finds evidence that people with CFS age faster. Paper here Thread here Frontiers in Endocrinology 'Higher prevalence of ‘low T3 syndrome’ in patients with CFS: A case-control study' (2018) Ruiz-Núñez et al. Paper here Thread here SMCI Ramsay research update on Jarred Younger 'brain temperature' study. Article here Thread here ....................................................... Biomedical studies recruiting participants USA Stanford, California. Evaluating hormones in women with ME/CFS. Thread here USA Stanford, California. Brain MRI and Immune Profiling CFS. Thread here UK Oxford, A study looking into energy status & MRS scans in CFS. Looking at lactate in the brain. Thread here ..................................................................... PDF version here
Week beginning 5th March 2018 News from around the world USA Dr Zaher Nahle is to lead the Arthritis National Research Foundation. Announcement here Thread here David Tuller - Trial By Error: News About My Plans. David will be crowdfunding another year to continue his work. Donations open for the month of April. Article here Thread here Australia David Tuller's tour dates announced, beginning 16th March in Melbourne. Thread here Australia Emerge Australia submission to the Joint Standing Committee on the National Disability Insurance Scheme. Thread here UK CMRC agree on a new Charter, March 2018. Crawley leaves the board, Chris Ponting joins. Focus on biomedical research. David Tuller comments. Article here MEA article here Thread here Tuller article here Thread here ........................................................................ Articles and a book American Society for Biochemistry and Molecular Biology feature article on ME: 'Myalgic Encephalomyeltis: Unknown cause. No cure. New hope.' By Lily Williams. Long excellent article includes history and current research. Article here Thread here Trial By Error: My Exchange With Archives of Disease in Childhood by David Tuller. Letter to the journal that published the SMILE trial. No useful response yet. Article here Thread here France Article in Le Figaro by an ME sufferer about his experience of living with ME in France. Thread here Article: ''The PACE trial – “one of the biggest medical scandals of the 21st century” by James Millar Craig. Lawyer's article about PACE parliamentary debate. Article here Thread here Book: ''Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick'' by Maya Dusenbery Thread here Thread linking article here .............................................................. Articles about research and researchers Clinical Science: Review article: Does the microbiome and virome contribute to ME/CFS?, 2018, Newberry et al Article here Thread here Jackson Labs interview with Dr Julia Oh, microbiologist, leading their ME/CFS microbiome project. Article here Thread here 'Seeking An Elusive Cure' - article on Maureen Hanson and her Collaborative Research Center. Article here Thread here ............................................................... Action USA: Members of Congress are coming together in a single voice to stand for ME/CFS. Will your Representative join them? Send a message to your member of Congress. Deadline March 14th. Thread here Scotland: “Lived experience of neurological conditions” Survey organised by Our Voice, The Alliance Neurological Programme and Neurological Alliance of Scotland. Conditions listed include ME. Survey here Thread here MEA monthly poll: Effective forms of pain management MEA here Thread here ......................................................... In Memory of Bob We mourn the loss of @Bob, ME sufferer, activist and much loved friend. Members only threads here and here. ......................................................... PDF version here
Week beginning 12th March 2018 News David Tuller - ''Trial By Error: The Dutch Review; My Trip; Bristol's Silence'' Article here Thread here David Tuller - ''Trial By Error: The Australian Situation, and Professor Crawley’s New Position''. Excellent Q&A with Penelope McMillan on the Australian situation - still dominated by PACE, CBT/GET. Article here Thread here ................................................................ In the media Australia Melbourne radio interview with Jen Brea, activist and ME sufferer Anna Kerr, Emerge CEO Dr Heidi Nicholls and Bio21 Institute researcher Chris Armstrong. Link here Thread here UK Daily Mirror: "Heartbroken mum suffering a 'living death' that means she can only see her son a few minutes a day". Includes good 3 minute video in which Dr Julia Newton describes ME and her research. Article here Thread here ............................................................... Blog articles Simon McGrath: ''The CMRC's new biomedical focus and big ambitions'' Article here Thread here The Hippocratic Post ''An integrative approach to ME'' by Dr Rajendra Sharma Not a recommendation. Article here Thread here Jackson Labs Interview with Dr Lucinda Bateman Article here Thread here ............................................................. Clinicians Summit report USA Bateman Horne Center. Dr. Bateman's Video Summary of Clinicians' Summit March 2-3, 2018 Video here Thread here Medscape Articles resulting from this summit by Miriam Tucker: ''Much Can Be Done to Ease 'Chronic Fatigue Syndrome' Symptoms''. Excellent article outlining points discussed at the meeting including treatments and unanimous rejection of PACE GET/CBT. Article here Thread here ''Mast Cell Activation May Underlie 'Chronic Fatigue Syndrome''. Doctors at the summit say a subset of patients may have treatable MCAS as an underlying factor contributing to their ME/CFS. Article here Thread here ''Low-dose Naltrexone Explored as Option for Chronic Pain'' Article here Thread here .......................................................... Conference report UK BACME conference report. BACME is the organisation of therapists treating people with ME/CFS. MEA report here Thread here ....................................................... Biomedical Research PLOS ONE 'Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME' (2018) Scheibenbogen et al Small pilot trial shows treatment may be effective in a subset of patients. Paper here Thread here OMF research update Includes mention of new 'metabolic trap' hypothesis being tested, and Severe ME big data study showing some genetics of interest. Article here Thread here ................................................................... Other Research PharmacoEconomics Open ''Functional Status and Well-Being in People with ME/CFS Compared with People with MS and Healthy Controls'' (2018) Kingdon and al., Uses UK ME/CFS biobank data. MEA press release ''People with M.E. ‘measurably more disabled’ than people with Multiple Sclerosis'' Paper here Thread here MEA Press Release here Thread here Nature ''Open-Label Placebo Treatment for Cancer-Related Fatigue: A Randomized-Controlled Clinical Trial'', 2018, Hoenemeyer et al Not a recommendation, but useful discussion on thread. Paper here Thread here Journal of Psychosomatic Medicine ''A step towards a new delimitation of functional somatic syndromes: A latent class analysis of symptoms in a population-based cohort study'', 2018 by Eliasen et al. Not a recommendation. Paper here Thread here Medical Hypotheses - ''Perceived fatigue and energy are independent unipolar states: Supporting evidence'', by Loy et al. Suggests energy and fatigue are controlled by different brain chemicals, and should be measured separately. Article here Thread here Nature Correspondence ''CFS therapies grounded in science hold promise'' by Robert Saunders. Excellent short letter in response to Sharpe and Chalder, challenging the PACE authors' claims. Letter here Thread here ............................................................ Action USA SMCI says Register now for ME/CFS Advocacy Day on Capitol Hill on May 15th. SMCI page here Thread here USA The NIH study needs more patients to take part. Thread here UK Independent commission on future of NHS call for submissions. Individuals or groups invited to submit. Can we provide evidence for removal of CBT/GET clinics and IAPT/MUS? Thread here .......................................................... Coming Events #Millions Missing 12th May UK Southampton Thread here London Thread here NICE Guideline scoping workshop, Fri 25th May 2018 Thread here Scope for current guideline Thread here ............................................................. PDF version here
Week beginning 19th March Headline news - Major PACE trial reanalysis paper published BMC Psychology: ''Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT'' by @Carolyn Wilshire, @Tom Kindlon, Robert Courney, Alem Matthees, David Tuller, Keith Geraghty and Bruce Levin. Paper here Thread here ME/CFS Research Review ''PACE trial’s findings fundamentally challenged by a new study'' by Simon McGrath. Easy to read summary and discussion of the paper. Article here Thread here Science Media Centre ''CFS/ME factsheet for journalists: The illness and the controversy''. The usual SMC spin supporting PACE. Factsheet here Thread here ''Reanalysis of the PACE trial'' Article here ''Expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments''. Includes good comment from @Chris Ponting. Article here MEA ''Reanalysis of the PACE trial finds impressive claims for recovery following CBT and GET are ‘not statistically reliable’.'' Article here Action for ME ''PACE update: Latest analysis and comment'' Statement here BBC ''Chronic fatigue trial results 'not robust', new study says'' Article here Thread here The Times ''Findings of £5million ME chronic fatigue study 'worthless'.'' Article here The Times Letter from Forward ME: 'Patients with ME/CFS ‘are not simply “deconditioned” as claimed by many psychiatrists’.' Letter on MEA website Thread here Daily Mail ''Findings of chronic fatigue study 'not reliable'.'' Article here Boots WebMD ''CBT for ME/CFS study questioned'' Article here The Canary ''The mainstream medical community just declared war on people living with ME'' Article here Thread here ............................................................... More Headline News Dutch Health Council publish their long awaited advice/guidelines on ME/CFS. A definite improvement - GET downgraded. Thread here Another thread here Australia - David Tuller ''Trial By Error: Checking in from Melbourne and Canberra…'' Includes links to interviews and panel discussion. Article here Thread here More David Tuller Australia tour events announced. Thread here .......................................................... In the media ScienceAlert Article ''One of The Biggest Myths About Chronic Fatigue Syndrome Has Been Debunked'' by Fiona Macdonald. Republished Australian article about PACE debunked and current biomedical research - focus on Prof. Staines' research at Griffith University. Article here Thread here India Abroad: "Mysterious Chronic Fatigue Syndrome shuts down young adults’ lives" Article here Thread here ........................................................... Biomedical Research Frontiers in Endocrinology ''Higher Prevalence of “Low T3 Syndrome” in Patients With CFS: A Case–Control Study'' by Ruiz-Núñez et al. Paper here MEA article here Thread here NeuroRehabilitation''Balance deficits in Chronic Fatigue Syndrome with and without Fibromyalgia'' (2018) Natelson et al. Small study suggests greater vestibular balance problems in CFS + FM than CFS alone. Paper here Thread here Fatigue: Biomedicine, Health and Behaviour ''Task related cerebral blood flow changes of patients with chronic fatigue syndrome: an arterial spin labeling study'' by Staud et al. Small study shows some differences in CBF associated with fatigue in CFS. Paper here Thread here BMJ Gut ''Markers of non-coeliac wheat sensitivity in patients with ME/CFS'', Alaedini et al. Suggests wheat sensitivity in subset of ME/CFS patients. Letter here Thread here OMF News of a new project studying red blood cell deformability in ME/CFS. Article here Thread here .............................................................. Psychosocial Research The Lancet GETSET Six excellent critical letters to the Editor published, with response from GETSET authors. Thread here Frontiers in Psychology ''Negative Affectivity, Depression, and Resting Heart Rate Variability (HRV) as Possible Moderators of Endogenous Pain Modulation in Functional Somatic Syndromes'' by Van den Bergh et al. Experiment on CFS and FM patients. Nothing useful found. Paper here Thread here ....................................................... Useful resources Science for ME PACE Briefing document ''The PACE Trial Controversy: A Summary''. Excellent summary of the trial, its flaws and faulty analysis, the reasons its failure was not acknowledged and what is needed now, with references. Document PDF here Thread here ........................................................ Threads of interest: New blog launched: ME/CFS Research Review by Simon McGrath (@Simon M). blog here Thread here PACE Trial Steering group (TSG) and Management group (TMG) minutes have been released. Thread here USA: NIH spending on ME/CFS in 2017 blog post by Jennie Spotila analyses detailed breakdown of funding and projects funded. Blog here Thread here .............................................................. Action UK Preparation for planned Parliamentary debate on ME. More information on contacting your MP from ME Action. Thread here USA Solicitation for Applications from Individuals Interested in Being Appointed to the Chronic Fatigue Syndrome Advisory Committee Document here Thread here USA SMCI ME/CFS Advocacy Day on Capitol Hill needs donations and people to sign up to attend on May 15th. Thread here Canada Millions Missing event preparation for May. Thread here ................................................................. PDF version here
Week beginning 26th March 2018 News David Tuller's crowdfunding launched For the month of April, donations are invited to contribute to the $75,000 target to employ David half time for another year. Donate here Thread here Australia David Tuller reports on his visit to Canberra. Article here Thread here NIH ME/CFS Advocacy Call - March 2018. Audio recording and transcript now available. NIH link here Thread here UK ''Trial By Error: A Q-and-A with Scottish MP Carol Monaghan'' by David Tuller Article here Thread here Europe EUROMENE (European Network on ME/CFS) is setting up a research network. Ireland's representative is researching the economic impact of ME/CFS. Article here Thread here ......................................................... Biomedical Research Journal of Extracellular Vesicles ''Circulating extracellular vesicles as potential biomarkers in CFS/ME'' by Jesús Castro-Marrero et al. Tiny study showed larger numbers and smaller size of EV's in blood of CFS/ME patients compared with healthy controls. Paper here Thread here Journal of Cardiology ''The aetiologic relation between disequilibrium and orthostatic intolerance in patients with ME/CFS'' by Kunihisa Miwa et al. Study suggests disequilibrium is more common than POTS as a cause of OI in ME/CFS. Paper here Thread here Researcher Interviews Jackson Labs blog: "Scientist Spotlight: Peter Robinson, M.D., M.S." Interview with expert in bioinformatics and genetics who will be helping analyse the ME/CFS data. Interview here Thread here ME/CFS Alert - Video interview with Michael VanElzakker, brain scan researcher now studying ME/CFS - talks about his findings so far and future plans. Interview here Thread here ................................................................ Psychosocial Research Pediatric Health, Medicine and Therapeutics ''Pediatric chronic fatigue syndrome: current perspectives'' by Esther Crawley. Includeds treatment advice based on CBT/GET/activity management and regulating sleep. Serious cause for concern - misinforming paediatricians. Article here Thread here Trial by Error ''Yet Another Go-Round with BMJ Open''. Tuller & Racaniello writing again to Trish Groves/BMJ spelling out clearly why Crawley's school absence study was not a service evaluation and did not have ethics approval. Article here Thread here MEA response to GETSET. The MEA has gathered together the letters to the Lancet and response published last week with the MEA Review of the trial. Article here Thread here ...................................................................... Publications and blogs The ME Global Chronicle - March 2018 Online 123 page magazine written by and for PWME gathering articles from many sources. Chronicle here Thread here Holland - Two excellent blogs relating to the recent Dutch ME/CFS guideline changes. "Dutch Health Council - Paradigm Shift - The denouement - My answer to prof. Knoop'' by Anil van der Zee (@Grigor) Blog here Thread here ''Desperate Scientists'' by @Lou Corsius Blog here Thread here ...................................................................... Action #MillionsMissing May 12th 2018 ME Action has information on how to get involved. ME Action link here Thread here David Tuller - donations invited - see above. UK How to involve your MP in Carol Monaghan's PACE campaign. Thread here ..................................................................... Future events Australia CFS/ME International Conference 26-27th November 2018 organised by Griffith University, Queensland. Speakers from USA, Germany, Japan, Australia. Details here Thread here .......................................................................
