This thread has a Science for ME News In Brief post for each week in November 2018 written by @Trish and @Kalliope. Scroll down to find this week's news.
Week beginning 5th November 2018 News UK NICE Guideline committee for ME/CFS update Dr William Weir has been appointed to the committee as a full member and Dr Charles Shepherd as a co-opted (non voting) member. Prof. Jonathan Edwards and Greg Crowhurst have been appointed as expert witnesses. Two nurses and a dietitian are still to be appointed. MEA statement here Thread discussion here Scotland The Scottish Parliament Petitions Committee reviewed the evidence submitted in support of the petition ‘Review treatment of people with ME in Scotland’. The committee praised the strength of the submissions and appreciated the seriousness of the situation and urgency for action. Meeting video here Thread here USA #MEAction ''Ten organisations ask congress to create legislation for ME/CFS''. Ten ME/CFS organisations in USA have joined forces and sent a letter to contacts in the House of Representatives requesting that they create legislation for ME as a way forward after CFSAC was recently abruptly terminated. Article here Letter here thread here New Zealand Report from the AGM of The Association of New Zealand ME Societies (ANZMES). In addition to the AGM agenda, there were talks from ANZMES President Nicola Swain and medical advisor Dr Ros Vallings. Report includes information on Dr Warren Tate's research. Thread with report here post #45 ........................................................... In the media Philadelphia, USA - The Inquirer ''Shining a light on chronic fatigue syndrome, a little understood disease among doctors'' Writer and ME patient Jennie Spotila with a well written and informative account of her experiences of living with ME for 24 years. Article here Thread here ........................................................... Trial by Error by David Tuller ''Yet Another Letter About the Lightning Process Study'' David Tuller has sent Fiona Godlee, editor-in-chief of the BMJ and editorial director of BMJ, a new letter concerning a trial by Esther Crawley et al on Lightning Process. He reminds Dr Godlee of her talk to MP's about the importance of prospective trial registration, and asks when the Journal will complete its 'editorial consideration'. Carol Monaghan MP, Darren Jones MP and Nicky Morgan MP were cc-d. Letter here Thread here Trial By Error: An Australian Exchange with Professor Sharpe Over a hundred members of the Australian ME/CFS Community have written an open letter to Prof. Sharpe after a distressing tweet, and received a response lacking in empathy. Article with letters here Thread here ....................................................... Blogs, letters, videos Letter to The Guardian about their Science Weekly podcast Forum member Lucibee wrote a critical letter to the Science Weekly team after their one-sided podcast episode from last week on Cochrane's possible withdrawal of a review on GET and ME. The letter is also presented as a blog post. Blog post here Thread here post #148 Bateman Horne Center - Video November Education Meeting: Setting the Standard of Excellence The event on Nov. 7th was filmed and is available on video. Dr. Lucinda Bateman talks about the history and development of their center and introduces two new physicians. Thread with video here NIH ME/CFS Advocacy Call - October 2018 Audio recording and transcripts of the tele briefing are now available on the NIH ME/CFS website NIH Website here Thread here post #13 ................................................................. Research Review Biomedicine & Pharmacotherapy - ''CFS: Suggestions for a nutritional treatment in the therapeutic approach'' - Geir Bjørklund et al Review with focus on nutritional interventions based on small open label studies. Not sufficient evidence for any useful conclusions. Article here Thread here ........................................................... Biomedical Research Journal of Thrombosis and Circulation ''The Abnormal Cardiac Index and Stroke Volume Index Changes During a Normal Tilt Table Test in ME/CFS Patients Compared to Healthy Volunteers, are Not Related to Deconditioning" Differences found in CI and SVI between pwME and healthy controls, but not between different severities of ME suggest the difference is caused by factors other than deconditioning, such as decreased blood volume and autonomic dysfunction. Paper here Thread here ....................................................................... Psychosocial Research Childcare, Health and Development ''Does fatigue and distress in a clinical cohort of adolescents with chronic fatigue syndrome correlate with fatigue and distress in their parents?'' by Loades, Chalder, et al. Questionnaire based study of about 100 families with a child with CFS looked at lots of possible associations and found normal levels of parental distress, fatigue and family functioning. Article here Thread here .......................................................................
Week beginning 12th November 2018 Trial by Error by David Tuller ''How to Avoid Ethical Review'' In 2007, the North Somerset and South Bristol Regional Ethics Research Committee (REC) provided a letter exempting a study of children with ME/CFS from ethical review as service evaluation. This same letter has been cited to exempt at least ten other unrelated studies from ethical review, despite them being clearly research not service evaluation. Bristol University and BMJ journals which published some of the studies have questions to answer. Blog post here Thread here ''Video of October Newry Talk, with Brian Hughes'' Short item linking to the video of the two talks. Article with video link here Thread here post #135 ......................................................... Articles, letters, blogs, videos #MEAction: Sept & Oct - Research Roundup Extensive and informative summary of news from research, conferences/talks, advocacy, books & media. Article here Thread here #MEAction: Fall advocacy round-up - A season of protests and petition An extensive summary of this autumn's advocacy work around the world. Article here Thread here ME/CFS Alert Episode 102: David Tuller interview Llewellyn King interviews David Tuller at Newton-Wellesley Hospital in Massachusetts. During the 15 minute interview they touch upon topics including the PACE-trial, opposing the British establishment and the Royal Free Hospital outbreak. Video here Thread here The Official Journal of ME/CFS Australia Anne Fleuren has written a 2 page article which gives a good summary and overview of the reanalysis paper of the PACE trial. Summary here Thread here post #128 University of Minnesota Medical education event organised by Student Interest Group in Neurology - sponsored by SMCI and Minnesota ME/CFS Alliance. 1 hour lecture including a Q&A session. Provides good and up to date introduction to ME. Lecture here Thread here Podcast “ME/CFS, Fibromyalgia: The Sexist Truth about 'Contested Illnesses'” by Isabella Rosario with Michael VanElzakker. Podcast here Transcript here Thread here .................................................. Biomedical Research News and Discussion OMF and the Standford research team Engineers Eric Shaqfed and Juan Santiago will be joining Ron Davis' research team's red blood cell deformability projects. OMF announcement here Thread here Michael Sikora joins the team to use the single cell screening method on T cells in ME/CFS. OMF announcement here Thread here post #38 Robert Phair has joined Science for ME and answered questions about his metabolic trap hypothesis. Thread here from post #113 ................................................. Biomedical Research and Review Articles Frontiers in pediatrics ''ME/CFS in the era of the human microbiome: persistent pathogens drive chronic symptoms by interfering with host metabolism, gene expression and immunity'' by Amy D. Proal et al Review suggesting ME/CFS may be driven by a pathogen-induced dysfunction and that patients might benefit from treatments supporting the human immune system in an effort to reverse the infectious disease process. Full text coming soon. Paper here Thread here Frontiers in neurology ''Neuroinflammation and cytokines in ME/CFS: A critical review of research methods'' by Michael VanElzakker et al The researchers argue that the vast majority of ME/CFS neuroimaging has failed to use optimal techniques for studying the brainstem. They also argue that both the biological mechanisms of cytokines and the innumerable sources of potential variance in their measurement make it unlikely to discover a consistent and replicable diagnostic cytokine profile. Full text coming soon. Paper here Thread here Frontiers in Neurology ''Hand grip strength as a clinical biomarker for ME/CFS and disease severity'' by Nacul et al. The study compared ME patients with healthy, MS and 'other fatigue' control groups. Found ME patients had 'lower values of maximum HGS and significant drops in values from the first to second and third trials, compared to other study groups.' HSG also correlated with disease severity. The authors suggest HGS is a useful potential biomarker, measure of disease severity, and outcome measure following interventions. Paper here Thread here Frontiers in Neurology "The UK ME/CFS Biobank: a disease-specific biobank for advancing a clinical research into ME/CFS" by Lacerda et al ''The paper assesses UK ME/CFS Biobank as a patient-centred project and model for other bio resources. It also discusses the challenges that remain for disease-specific biorepositories seeking to enable biomedical research'' (quoted from Biobank's tweet). Paper here Thread here Brain Nerve ''Brain Science on ME/CFS'' by Watanabe Article in Japanese with Google translation of abstract into English. Summarises finding so far from different scanning methods including differences in regional cerebral blood flow and glucose utilization rates, and brain inflammation. Article here Thread here Brain, Behaviour and Immunity ''Associations between clinical symptoms, plasma norepinephrine and deregulated immune gene networks in subgroups of adolescent with CFS'' by Chinh Bkrong Nguyen et al. Conclusion: ''We identified 29 immune-gene sets linked to plasma norepinephrine level that could delineate CFS subgroups. Plasma norepinephrine stratification revealed that lower levels of norepinephrine were associated with higher fatigue. Our data suggests potential involvement of neuro-immune dysregulation and genetic stratification in CFS.'' Paper here Thread here ..................................................... Upcoming events December 13th Webinar: ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study Dr. Jarred Younger will give a talk on his new research findings that indicate brain inflammation as part of ME/CFS pathophysiology. Registration for webinar here Thread here .................................................... Fundraising UK ME Association Ramsay Research Fund Christmas appeal MEA article: ''Xmas Appeal: An interview with research grant recipient Dr Keith Geraghty''. Appeal target £200,000 with 35% raised so far. Article here Donation link here Thread here USA Solve ME/CFS Initiative appeal Donations made up to 30th Nov will be triple matched. Thread here .................................................
Week beginning 19th November 2018 News Norway: The Norwegian ME Association withdraws as co-organiser of research conference When the alternative treatment method Lightning Process became a part of the programme of an upcoming research conference in Oslo Nov. 26-27, despite the Norwegian ME Association' protests, they saw no other solution than to withdraw themselves as co-organiser. The other organisers are The National Advisory Unit for CFS/ME and the Norwegian Institute of Public Health. Statement from the patient organisation here (in Norwegian) Thread here UK - Update on a Parliamentary Debate Carol Monaghan MP has reported that she had been successful with her application for a full chamber debate on ME/CFS in the House of Commons. No date has yet been arranged for the debate. MEA note here Thread here Edit added Tuesday 27th November. It now appears that this is inaccurate. A debate has been applied for but not agreed. See this post ...................................................................... UK - NICE guideline committee Patient evidence From the MEA facebook page: There will soon be an important announcement from the Forward ME group of patient charities regarding the collection of patient evidence that will be submitted to NICE. Thread here Letter from NICE A letter has been sent to people who wrote to NICE about guideline committee appointees. The letter includes this statement: Thread with copy of letter here Trial by Error by David Tuller ''Some thoughts about NICE'' Appointments to the UK NICE ME/CFS Guideline review committee have mostly been announced. David's article discusses 'Groupthink in the UK', 'Tough task for GET/CBT proponents' who are or have been involved in clinical trial such as PACE, MAGENTA and FITNET who have allegiance to GET/CBT and to their flawed methodology, and 'The role of “eminence-based” medicine'. He concludes that the necessary robust discussion of ME/CFS treatments rooted in scientific principles is only possible if the committee adds a comparable cohort of biomedical professionals with some knowledge of clinical trials. Article here Thread here ............................................................... In the media Norway: Open letter to the Minister of Health from 20 family and friends of ME patients. The letter provides good information on current situation and urges the minister to prioritise more biomedical research and better help to the patients. Letter here (in Norwegian) Thread here post #416 ............................................................. Biomedical Research Current Topics in Medicinal Chemistry "Tetramethoxyluteolin for the treatment of neurodegenerative diseases" by Theorahis C. Theoharides et al Reviews the role of cytokine-neuropeptide interactions in the pathogenesis of inflammation of the brain and the beneficial role of natural flavonoids. Refers specifically to ME/CFS and Autism Spectrum Disorder. Full paper not available yet. Thread here .............................................................. Diagnosis Frontiers in Pediatrics Perspective article: ''The Development of the DePaul Symptom Questionnaire: Original, Expanded, Brief, and Pediatric Versions'' by Jason and Sunnquist. Describes the history of the development of the questionnaire and its value in accurate diagnosis of ME/CFS. Article here Thread here .................................................................. Psychosocial Research European Journal of Paediatric Neurology ''Adolescent and parent factors related to fatigue in paediatric MS and CFS: A comparative study'' by Chalder, Moss-Morris et al. Small questionnaire based study makes unfounded deductions from flawed CFS research and concludes that fatigued kids with MS and their families are 'potential targets for intervention' Not a recommendation. Paper here Thread here Disability and Rehabilitation Review article: ''Effects of activity pacing in patients with chronic conditions associated with fatigue complaints: a meta-analysis'' by Hettinga et al Not clear from abstract whether it includes CFS. Concludes activity pacing can be usefully integrated into care to reduce fatigue. Article here Thread here ...............................................................
Week beginning 26th November 2018 News UK ME Biobank The CureME team at the London School of Hygiene & Tropical Medicine (LSHTM) received an Honourable Mention for Biobank of the Year 2018, presented on Tuesday 27th November at the UK Biobanking Showcase in London. Thread here Dutch Patient Survey Experiences of ME patients with disability assessments by UWV. 382 respondents from all over the Netherlands showed problems with medical assessments for benefits, including severity not being believed and pressure to do CBT/GET, and many having been made worse by these therapies. Dutch full report here English overview here Thread here ........................................ Cochrane Review ''Exercise Therapy for CFS''. A statement published on the Cochrane website says that Cochrane has not accepted for publication Larun's revised version in response to Robert Courtney's complaint. The statement concludes: ''The Editor in Chief is currently holding discussions with colleagues and the author team to determine a series of steps that will lead to a full update of this review. These discussions will be concluded as soon as possible''. Cochrane statement here Thread here ''My complaint to the Cochrane Governing Board about the Cochrane review of Exercise for chronic fatigue syndrome''. Caroline Struthers has, after extended correspondence, been asked by Cochrane to submit a summary of her complaint about the Exercise therapy for CFS review to the Governing Board of Cochrane. She has made her submission public on her blog. Blog article here Thread here .................................................... NICE ME/CFS guidelines committee Science for ME letter This forum has sent a letter to the chair of the NICE guideline committee (copied to NICE complaints) raising concerns about conflicts of interest for three appointees to the committee. The letter has been made public along with the replies. Thread with letters here ............................................................... In the media Australia SBS Insight article: 'I was in denial and ashamed by my CFS'. Simon del Favero writes of his experiences of ME/CFS following glandular fever, and travelling from Australia to the USA for treatment. Article here Thread here The Canary ''An SNP MP is pushing for a debate into a ‘medical scandal’.'' Steve Topple describes ME, Carol Monahan's work in Parliament in raising the issue, PACE, and the abuse suffered by pwME. No date has been set for a debate. Article here Thread here UK - The Sunday Times ''How it feels to... be exhausted 24 hours a day - Two years ago, Joseph Luke went from healthy to housebound when he was struck down by ME. He describes the debilitating condition and asks why so little is being done to fund research.'' Excellent article by a journalist who had had severe ME for two years. Article here Thread here .................................................... Articles, blogs, talks, letters Solve ME/CFS Initiative Chronicle Fall 2018 is now available. 20 pages of news including a summary of their work in research and advocacy and items on individual research projects. PDF version here Thread here David Tuller livestream from Norway - The PACE Trial: A "Thing of Beauty" or Pile of Crap? Tuller gave a talk about the PACE-trial in Drammen, Norway. The talk was live streamed. Talk here Thread here Norway: WithKnowledgeForME - a campaign week for ME The Norwegian ME Association has organised a campaign week for ME with videos, posters, articles and talks. Thread with English summaries here Blog and article 'A Life Hidden' by Naomi Whittingham, severe ME sufferer and advocate introduces her blog with an article 'Words from a Hidden World' discussing the role of media articles in raising awareness about severe ME. Article: ''Severe ME left me in a world of pain and darkness. 26 years on, why is it still so poorly understood?'' also available as audio. Blog link here Thread here Article link here NIH responds to a petition ''Increase Funding For ME/CFS So We Can Find a Cure'' with over 50,000 signatures. Mary Gelpi who set up the petition has posted the response from the NIH. Article with response here Thread here ...................................................... Biomedical Research American Society of Haematology Conference Abstract: ''Erythrocyte Deformability As a Potential Biomarker for Chronic Fatigue Syndrome'' by Ron Davis et al. Small study using a device to mimic blood flow through microcapillaries found evidence of slower transit of red blood cells and reduced deformability. Electron microscopy also showed differences. If replicated this could be a potential biomarker, and suggest an explanation for some symptoms. Abstract here Thread here Journal of Translational Medicine ''Evaluation of four clinical laboratory parameters for the diagnosis of ME'' by de Meirleir et al A retrospective study of 140 each of patients and healthy controls lab tests found 4 parameters including levels of prostaglandin E2 and interleukin 8 that may help with clinical diagnosis and shed light on the pathophysiology of ME. Paper here Thread here PLEFA ''Low omega-3 index and polyunsaturated fatty acid status in patients with CFS/ME'' - Jesús Castro-Marrero et al Omega-3 fatty acid levels and omega-3 index were measured in 31 Spanish CFS/ME patients. Result: low mean omega-3 index in 92.6% of sample. The researchers suggests pro-inflammatory state and a possible increased risk to cardiovascular health. Article here (abstract only) Thread here ........................................................... Other research Social Theory & Health ''Socially constructed and structurally conditioned conflicts of medical uncertainty'' - Olaug Lian et al Article based on analysis of texts from 385 patients with "medically unexplained physical symptoms", ME included. Shows that patients had similar problematic experiences in clinical consultation and identifies 5 fundamental expectations from patients. Article here Thread here ............................................................... Coming events Webinar: Solve ME/CFS Initiative, "You + M.E.: A community resource, built by the community", 6th December 2018 Sadie Whittaker, SMCI Chief Scientific Officer, will discuss the new patient registry that will link with their existing biobank. Anyone is welcome to join the discussion on how to build this resource in best possible way. Webinar registration here Thread here ....................................................... In Memory Dr Anne McIntyre ME Association: In Memory of Dr Anne Macintyre: ‘An extremely kind and compassionate doctor’. Dr Charles Shepherd and Jenny Wilson share memories of Dr McIntyre, who was a medical adviser to the ME Association for many years, wrote the well received book 'M.E. A Practical Guide', and helped many people with ME. Article here Thread here ......................................................
