ME/CFS News in Brief July 2018 This thread includes a post for each week in July 2018. Scroll down to find the current week.
Week beginning 2nd July 2018 News Unrest The film has won the PBS Independent Lens Audience Award for 2017/18. Congratulations to Jennifer Brea (@JenB) and all concerned. Article here Thread here ............................................................... Articles, videos, blogs, open letters, book Trial By Error by David Tuller ''Professor Sharpe’s Pre-Hearing Briefing for Monaghan'' The briefing repeats all their old false arguments that PACE is good science. Article here Thread here ''My Letter to Fiona Godlee'' the editor-in-chief at The BMJ and editorial director of BMJ. Subject line: ''BMJ’s failure to address problems with pediatric studies of ME/CFS.'' Article here Thread here Solve ME/CFS Initiative CEO Carol Head has written an excellent open letter to Forbes magazine to refute an ignorant article they published about ME claiming anti-PACE is anti-science. Letter here Thread here Submission to Scottish Parliament in support of the ME petition, by Professor @Jonathan Edwards. PDF here Thread here The ME Show Episode 9. @Gary Burgess interviews Chantelle Parry who set up an M.E. friendship group in Gloucestershire, as well as to Rachel Ephgrave who is one of more than 100 members of the group. Video links here Thread here post #152 Centre for Welfare Reform (UK) Discussion paper: ''Reclaiming ‘Chronic Illness’ An introduction to the Chronic Illness Inclusion Project'' by Catherine Hale. 38 pages. From the summary: ''In this paper, I argue that, ‘chronic illness’ is a self-ascribed identity which implies both a distinctive form of impairment (in our case, bodily malfunction) and a shared experience of disability or disablism (social oppression).'' Article here Thread here Book ''A Girl behind dark glasses'' by Jessica Taylor-Bearman is out this week. Jessica (@jayletay) has had severe ME for many years, and featured in Unrest. Female first article here Thread here .................................................................... Biomedical Research Nature ''Insights into ME/CFS phenotypes through comprehensive metabolomics'' by Lipkin et al. ''We report biomarker discovery and topological analysis of plasma metabolomic, fecal bacterial metagenomic, and clinical data from 50 ME/CFS patients and 50 healthy controls.'' Article here Thread here PLOS ONE ''Intracranial compliance is associated with symptoms of orthostatic intolerance in chronic fatigue syndrome'' by Finkelmeyer, Newton et al. Paper here Thread here Diagnostics ''Neural Indicators of Fatigue in Chronic Diseases: A Systematic Review of MRI Studies'' by Goni et al. Concludes: ''Given the different designs, methodologies and variable results, we conclude that there are currently no well-defined brain indicators of fatigue in chronic diseases.'' Article here Thread here ............................................................. Biomedical researcher videos OMF Short video of Dr Ron Davis talking about the new NIH funded 5 year study led by himself and Dr Mark Davis at Stanford University. Video here Thread here Advances in ME/CFS Research Video interview with Dr David Systrom of Boston who has found evidence of small-fiber polyneuropathy (SFPN) in ME and fibromyalgia, and is carrying out drug trials on Fibromyalgia patients. Video here Thread here ................................................................. Other research Journal of Bioethical Inquiry ''Are ME/CFS Patient Organizations “Militant”?''by Blease and Geraghty. Describes the long history of scientific disagreement and the accusations of ''militant'' patient activism. The authors draw parallels with 1980's AIDS activism in the USA which involved both public activism and engagement with science. Concludes: ''We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.'' Paper here Thread here Fatigue: Biomedicine, Health & Behavior ''Latent class analysis of a heterogeneous international sample of patients with ME/CFS'' by Huber, Sunnquist & Jason. Detailed questionnaire based study of over 1000 pwME found subtypes based on symptoms that they suggest may help focus future research and treatments. Article here Thread here Journal of Health Psychology ''Meta-analysis investigating post-exertional malaise between patients and controls'' by Brown and Jason. Concludes that PEM should be considered a cardinal symptom of ME/CFS. Article here Thread here Journal of Health Science and Education ''The Importance of Screening for Suicide Risk in Chronic Invisible Illness'' by Cathy Pederson. Describes the patient experience well. Recommends doctors believe the patient, properly treat physical symptoms and screen for suicidal thoughts and offer appropriate help. Article here Thread here ........................................................ Quacks, charlatans and other dangerous creatures Journal of Experiential Psychotherapy (not a serious scientific journal) ''Understanding the Lightning Process Approach to CFS/ME; a Review of the Disease Process and the Approach'' by Parker et al. A sales pitch masquerading as science. Not a recommendation. Article here Thread here ............................................................ PDF version here ............................................................
Week beginning 9th July 2018 News USA CDC Information for Healthcare Providers on ME/CFS updated. Includes presentation, clinical course, diagnosis, clinical care and historical case definitions and criteria. Some key points - ME/CFS is a biological illness, PEM a core symptom, clinical care based on symptomatic treatment, pacing (staying within energy envelope) Aerobic exercise can cause harm. No mention of CBT or GET. Our thread discussion raises some issues, but it is a great improvement. CDC link here Thread here Medscape ''CDC Launches New ME/CFS Guidance for Clinicians'' by Miriam Tucker. Article here ME Association ''America calls for a cultural shift in the way care is offered to ME/CFS patients'' Article here ........................................................................ Articles, interviews, letters, blogs Sweden Excellent article ''Mats Reimer continues to convey an incorrect picture of ME / CFS'' by Sten Helmfrid published on Research Gate refuting an opinion piece by BPS proponent Mats Reimer that was published on the Swedish National TV website. Article here Thread here Trial By Error by David Tuller ''Do All Clinical Trial Experts Love PACE?'' Reiterates criticisms of PACE from clinical trial experts in response to a tweet from Prof. Michael Sharpe. Article here Thread here ''Yet Another Appeal to The Lancet, With More On Board'' The letter sent in June has been re-sent with additional signatories - 10 UK Members of Parliament and about 60 patient and advocacy organisations from around the world (including Science for ME). Letter here Thread here ''Waiting for Godlee'' Another letter to the BMJ editor about the SMILE trial of LP, an ambiguous BMJ statement, and SMILE being used to promote LP. Article here Thread here ''My Letter to Parliament’s Science and Technology Committee'' Raises the issues of research integrity with PACE and 2 Crawley papers. Article here Thread here Jaxmecfs - Advocate Spotlight: Charmian Proskauer, President of the Massachusetts CFIDS Association. Article here Thread here Blog article ''The “X” factors of ME.'' by Anil van der Zee. Discusses the problems pwME have with the psychologising of ME/CFS, how this happened and the treatments based on this false theory. Article here Thread here (members only) .................................................................. Research news SMCI updates July 2018. Includes an article by Katya Lavine who attended the sessions for young scientists at the recent IiME conference, and preliminary reports from 2 SMCI funded research teams: Team 1: Neuroimaging Study Provides Evidence of Inflammatory Processes in the Brains of Individuals with ME/CFS led by Dr Jarred Younger Team 5: Molecular Mechanism Behind Mitochondrial Dysfunction Indicated, for Further Study led by Dr. Bhupesh Prusty, a virologist looking at herpes virus HHP-6 effects on mitochondrial function. Article here Thread here ................................................................ Research Asian Pacific J. Allergy, Immunol. ''Reduced glycolytic reserve in isolated natural killer cells from ME/CFS patients: A preliminary investigation'' by Nguyen et al. Small study suggests resting NK cells from ME/CFS patients have reduced ability to increase glycolytic flux to respond to high energetic demands for ATP production. Paper here Thread here Journal of Health Psychology ''Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness'' by Devendorf et al. Analyzed responses from 29 patients who endorsed suicidal ideation but did not meet depression criteria. Topics raised included severe disability, restructured lives, serious pain, loss, stigma, conflict and feeling trapped by lack of treatments. Paper here Thread here ....................................................................... Action USA PWME & healthy controls wanted for Cornell (Hanson) NIH collaborative work - CA & NY. 5 hour exercise capacity and activity level study. Recruitment leaflet here Thread here .......................................................................... PDF version here .........................................................................
Week beginning 16th July 2018 News Australia Emerge Australia has been allocated $370,000 in Federal funding. The funding will be used to support Emerge's Information Line; to develop knowledge and infrastructure around support services; to conduct a detailed Australian ME/CFS “health and wellbeing” survey; and for an international research symposium, to be held in Australia in 2019. Thread here USA Report from CFSAC June 20-21 now available as audio and transcripts. Thread here ......................................................................... In the media ABC Australia “Potentially harmful and old-fashioned chronic fatigue treatments under review” by Andy Park. Mixed article - some good points and some misinformation. Article here Thread here Belfast Telegraph ''Doctors 'do more harm than good' sending ME patients to gym'' by Lisa Smyth Good short article, quotes Joan McParland who has had ME for 20 years including 7 years in bed. Article here Thread here Stat News ''The medical community is changing its mind on chronic fatigue syndrome. Why aren’t insurers?'' by Steven Lubet and David Tuller. Article about Brian Vastag's legal battle to be awarded disability insurance payment. Article here Thread here The Canary ''A heart-wrenching new book tells a story that millions of missing people will recognise'' by Steve Topple. Review of Jessica Taylor-Bearman's book, ''A Girl Behind Dark Glasses''. ''What A Girl Behind Dark Glasses perhaps does most crucially is make an important public record. It shows how a person living with ME can often be treated by the medical profession.'' Article here Thread here ...................................................................... Blogs, articles, letters Holland Open Letter: 74 International experts urge Dutch Minister of Health to make substantial long term investment in biomedical research. Letter here Thread here Trial by Error by David Tuller ''The Contentless “Editor’s Note” About the Lightning Process Trial'' Includes a letter to Nick Brown, the editor-in-chief of Archives of Disease in Childhood. Article here Thread here OccupyME blog by Jennie Spotila: ''How to represent''. Lessons learned from being a patient representative on an FDA Advisory Committee. Article here Thread here .............................................................. Biomedical research articles MECFS Research Review by Simon McGrath ''The microbiome hypothesis: Dr Ian Lipkin’s collaborative, part 1'' Describes two NIH funded projects ''which will use high-tech approaches to see if changes in the gut are causing changes in the body, particularly in the immune system''. Article here Thread here BMC Systems Biology ''High-fidelity discrete modeling of the HPA axis: a study of regulatory plasticity in biology'' by Broderick et al. Lists CFS as one of the complex illnesses studied. Article here Thread here Solve ME/CFS Initiative ''Hot areas in ME/CFS Research'' follow up Q&A with Prof. Anthony Komaroff. Article here ''Learning more about the ME/CFS Data Management Center with Dr. Becky McNeil'' Article here Thread here France Press Release: ASFC (French CFS Association) to clinically evaluate ME/CFS pathogenesis model by Bio-Modeling Systems. Thread here ...................................................................... Psychosocial research and commentary Journal of Health Psychology Special section on Improving Access to Psychological Therapies (IAPT) - a UK NHS service for people with psychological problems now being extended to include physical illnesses. Editorial ''IAPT under the microscope'' by David Marks. Urgent review needed of expansion of IAPT to include MUS and long term physical conditions. Recovery rates claimed do not match those found. Editorial here Thread here Journal link for all articles in the special section here. British Journal of Sports Medicine Editorial ''Checking our blind spots: current status of research evidence summaries in ME/CFS'' by Davenport et al. Looks at the problem when clinical trial evidence is used to support 'Evidence based practice' when the trials are not carried out with competence and sound ethics. Highlights limitations and undue influence of PACE on ME/CFS treatments. Editorial here Thread here Oxfordshire ME Group for Action (OMEGA) Experiences of Children with ME July 2018. This report describes the results of a brief qualitative survey of families in Oxfordshire carried out by OMEGA – and makes proposals. Summary here Report here Thread here .................................................................
Week beginning 23rd July 2018 In the media UK BBC Radio 5 Presenter Anna Foster interviewed Merryn Croft's sister and mother, Dr Charles Shepherd and MP Carol Monaghan. Article here Thread here with links to radio interviews. ........................................................... Letter, podcast UK Open Letter from Professor Malcolm Hooper to Bridget Phillipson MP. 8 page letter refuting claims about PACE and ME/CFS treatment by Lord O͛Shaughnessy, Parliamentary Under Secretary of State for Health. Letter here Thread here The ME Show Episode 10. @Gary Burgess presents a 20 minute distillation of the 3 hour UK Parliamentary debate on ME held last month in Westminster Hall led by MP Carol Monaghan. Podcast links here Thread here ................................................................. Biomedical Research News Solve ME/CFS Initiative Webinar ''Crossroad of the immune response and the microbiome: Impact on ME/CFS'' presented by Derya Unutmaz, MD, Professor and Principal Investigator at The Jackson Laboratory for Genomic Medicine. Video here Thread here Invest in ME Research: 13th IiMER International Conference Report 2018 Detailed 37 page report of all the talks at this year's conference. IiMER web page here ... PDF here ... Buy DVD here ... Thread here ME Association article ''Dr Shepherd provides an update on antibiotic use in M.E. and highlights concerns about quinolones and fluroquinolones''. Article here Thread here USA - Bateman Horne Center which diagnoses and treats ME/CFS has announced it will be a recruitment center for the NIH Precision Medicine Initiative. People with ME in the USA are being encouraged to sign up to participate. Article here Thread here ............................................................. Biomedical Research PLOS ONE ''Identification of ME/CFS -associated DNA methylation patterns''by Trivedi, Klimas et al. ''Our results are aligned with previous studies that indicate a dysregulation of the immune system in ME/CFS. They also suggest a potential role of epigenetic de-regulation in the pathobiology of ME/CFS''. Small study, with plans to do a larger validation study to see if this can be used as a biomarker. Paper here Thread here Medical Hypotheses ''The putative glymphatic signature of CFS: A new view on the disease pathogenesis and therapy'' by Wostyn et al. Speculates that glymphatic dysfunction, causing toxic build up within the central nervous system, may be responsible for at least some cases of CFS and may be helped by increasing glymphatic fluid flow. Article here Thread here ............................................................ Advocacy NICE guidelines - Stakeholder submissions to the latest draft scope document have been submitted to NICE, including from S4ME. Thread here ............................................................ PDF version here .............................................................
