This thread has a Science for ME News In Brief post for each week in December 2018 written by @Trish and @Kalliope. Scroll down to find this week's news.
Week beginning 3rd December 2018 .......................................................... News and commentary on Cochrane reviews Re-positioning of Chronic Fatigue Syndrome Cochrane is considering a re-positioning of the editorial oversight of CFS/ME reviews from "Common Mental Disorders" to "Long Term Conditions and Ageing". Final decision is anticipated to be made before the end of 2018. Statement here Thread here Cochrane Review 'Exercise therapy for CFS' A comment by Mark Vink with a link to his paper reanalysing this review has been added on the Cochrane website with a reply saying it will be considered as part of the current process. Cochrane link here Thread here Trial by Error by David Tuller "Some Good News on Cochrane" About Cochrane's recent rejection of the revision of the review 'Exercise Therapy for CFS'. Article here Thread here Cochrane Review 'Exercise therapy for chronic fatigue syndrome (individual patient data)' This review based on individual patient data from trials has never been published. The protocol for the review, which was published in 2014, has now been withdrawn by Cochrane. (Note - The protocol lists the PACE and FINE researchers as part of the review team). Cochrane announcement here Thread here ........................................................ News UK CFS/ME Research Collaborative (CMRC) Executive Board November meeting minutes published. Include report on the 2018 conference. Next conference March 2020. Also discussed research policy and progress towards appointing patient representatives. Minutes here Thread here The International Alliance for ME (IAFME) has published a good trans-national consensus document: "Recognition, research and respect: An agenda for change in M.E", and has sent it to the World Health Organisation asking for action on improving recognition, better diagnostic criteria and support, and more biomedical research. Document here Thread here #ME Action "Let's start the values and policies process!" #MEAction has started a process of consultation including polls and social media discussions on its values and policies with a view to publishing a final document in April 2019. Thread here USA Solve ME/CFS Initiative: "Congress to HHS: What's replacing CFSAC?'' Solve, along with #MEAction and the Massachusetts ME/CFS & FM Association asked people to contact their Senators and Member of Congress and urge them to sign a letter to the Department of Health and Human Services (HHS). Thread here UK Invest in ME Research has received a donation of £57k from the John Richardson Research Group. Thread here USA Graded Exercise Therapy and Cognitive Behavioral Therapy are no longer recommended in the Healthwise content for ME/CFS on the Kaiser Permanente website. Website here Thread here Australia ME/CFS Discovery Research Network (MDRN) - A collaborative network has been established of ME researchers based at five Australian universities including Chris Armstrong's group at Melbourne University. They held a closed workshop on Saturday 8th December to present their work and discuss future collaborations. Thread here Australia The research group based at the National Centre for Neuroimmunology and Emerging Diseases Research at Griffith University has received a $2m donation to fund two full Professorial Research Fellowships for four years. Article here Thread here Australia Sasha Nimmo reports on a meeting with the Australian Government Health minister Greg Hunt, along with Prof Paul Fisher, head of microbiology at La Trobe University and Dr Heidi Nicholl, CEO of Emerge Australia. They raised the need for more funding for biomedical research. Article here Thread here .......................................................... Trial By Error by David Tuller "BMJ and Bristol's Ethics Exemptions" David Tuller has sent an e-mail to Dr Fiona Godlee, editorial director of BMJ, about researchers from Bristol university having used a REC letter from 2007 to exempt several studies from ethical reviews, five of them published in BMJ journals. Carol Monaghan MP, Darren Jones MP, Nicky Morgan MP and Teresa Allen from the Health Research Authorities were cc'd. Article here Thread here ............................................... Articles and blogs Able Magazine ''Chronically-ill 37-year-old lands first ever job, thanks to ground-breaking UK charity'' describes the experience of Victoria Clutton, who has had severe ME for many years, being helped by a charity to find part time computer programming work she can do at her own speed from home. Article here Thread here Occupy M.E. ''NIH's Obstacle Course to Success for ME/CFS Researchers'' Jennie Spotila discusses six obstacles for researchers in achieving allocations from NIH for research into ME. Blog article here Thread here ME Australia ''Meet the Scientists: Prof Sonya Marshall-Gradisnik'' by Sasha Nimmo. Briefly describes her research on ME including immunology, brain function, developing a possible biomarker, and in vitro drug testing, as well as and 'myth busting' about ME with the media and politicians. Blog article here Thread here BottomLineInc ''Is your Chronic Fatigue Syndrome Treatments Making You Worse?'' Article about ME with some useful, general advice for patients with MD Lucinda Bateman and Bateman Horne Center as source. Article here Thread here ...................................................... Webinars Bateman Horne Center "New findings suggest that multiple mitochondrial mutations create susceptibility for ME/CFS" by Professor Alan Light. Prof Light's team have studied genetic variants in both chromosomal and mitochondrial DNA relating to immunology and energy metabolism in over 17O ME patients and 120 controls. He hypothesises being homozygous for some of these increases susceptibility to non-recovery after infection or other challenges. Webinar here Thread here SMCI "You + M.E.: A community resource, built by the community" Sadie Whittaker, Chief Scientific Officer of SMCI described new developments to enhance the SMCI biobank, including data collection from patients via a symptom app and wearables, home visits for blood draws from severely affected patients, and more collaboration. Webinar here Thread here ......................................... Biomedical research Metabolites ''Prospective Biomarkers from Plasma Metabolomics of ME/CFS Implicate Redox Imbalance in Disease Symptomatology'' by Maureen Hanson et al. Studied 832 plasma metabolites in 32 ME patients and 19 healthy controls, all female. Abstract concludes: ''We report on 14 metabolites with differences in abundance, allowing us to develop a theory of broad redox imbalance in ME/CFS patients, which is consistent with findings of prior work in the ME/CFS field.'' Paper here Thread here Epigenetics ''Genome-epigenome interactions associated with ME/CFS'' by McGowan et al. Studied DNA methylation profiles of T-cells and single nucleotide polymorphisms (SNPs) from 61 ME/CFS patients and 48 controls. The abstract concludes that their findings ''suggest several genetic and epigenetic elements potentially involved in the mechanisms of disease in ME/CFS.'' Paper here Thread here University of Sussex ''Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome'' by Pariate et al Abstract labelled 'accepted for publication'. Higher levels at baseline and after treatment of interleukin (IL)-6 and IL 10 found in those who developed persistent fatigue. Also studied cytokines and kynurenine to tryptophan ratios in this cohort, CFS patients and controls. Abstract here Thread here ......................................... Other research Journal of Biological Physics and Chemistry ''Bodily distress syndrome: Concerns about scientific credibility in research and implementation'' by Diane O'Leary. BDS is a construct without supporting evidence. It brings to the fore questions about the quality of research in psychosomatic medicine, including the PACE trial. This has implications for WHO classifications of diseases. O'Leary provides a detailed analysis of the problems. Paper here Thread here Chronic Illness ''Patients’ hopes for recovery from ME/CFS: Toward a “recovery in” framework'' by Jason et al. Semi-structured interviews with 10 women aged over 50 with ME/CFS aimed to understand how patients conceptualize the definition and possibility of recovery. The abstract highlights 'personal empowerment' and 'living a fulfilling life'. Paper here Thread here Journal of Translational Medicine ''Increased risk of CFS following burn injuries'' by Tsai et al Used data from the Taiwan National Health Insurance system for a large retrospective study that found a higher risk of subsequently developing CFS in people who had suffered burns. Paper here Thread here BMJ Paediatrics Open ''Adolescent’s descriptions of fatigue, fluctuation and payback in CFS/ME: interviews with adolescents and parents'' by Crawley et al. Described as part of a larger study. Based on semi-structured interviews with 21 children and their parents. Concludes that some adolescents with CFS are sicker than others. No new insights. Not a recommendation. Article here Thread here Patient Education and Counselling ''Could disease labelling have positive effects? An experimental study exploring the effect of the CFS label on intended social support'' by Noble et al. University students responding to a questionnaire based on hypothetical situations. Not a recommendation. Article here Thread here .................................................... Coming events SMCI Webinar Thursday 13th December ''ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study'' with Jarred Younger. Register for webinar here Thread here ..........................................
Week beginning 10th December 2018 News Canada ME, FM and the National ME/FM Action Network have been recognized in the Canadian House of Commons. Member of Parliament Anita Vandenbeld made a very powerful statement recognizing the difficulties facing the ME/FM community in Canada. You tube video here Thread here Holland The Minister of Health and Sports, Bruno Bruins, has sent a letter to the Parliament about ME. Main points in letter are that more biomedical research is needed, patient involvement is important, CBT is not a curative treatment, clinics for ME patients should be initiated and education programs for health care personnel should be developed. Facebook statement from MillionsMissing Holland here Thread here ................................................................. Trial By Error by David Tuller And Cochrane Makes Another Move About the recent withdrawal by Cochrane of a protocol for an individual patient data (IPD) review of exercise therapy as treatment for ME. The lead author is the same as in the currently contested Cochrane exercise review. Article here Thread here The view from Norway Article about Tuller's recent visit to Norway. Gives an up to date account of the situation for ME patients in the country, links to one of the talks he gave and contains a Q-and-A with the Norwegian ME Association's assistant secretary general. Article here Thread here ................................................ Newsletters, blogs, videos, articles Solve ME/CFS Initiative: Chronicle Newsletter, Fall 2018 Contains a summary of their work this quarter, news and updates from research and advocacy. Newsletter here Thread here SMCI Short talk (5 minutes) by Dr Jose Montoya on believing patients and hopes for treatment. Video here Thread with transcript here Action for M.E. Annual General Meeting (AGM) and Conference 2018 took place on Nov. 28th. The AGM and talks by Jonah Grunsell, Phil Murray, Neil Harrison, Alice Kelk, The Countess of Mar and Sonya Chowdhury are now available on YouTube. Thread with link to YouTube videos #post 19 A life hidden: The Power of Listening UK ME patient Naomi Whittingham shares a powerful contribution she gave in 2016 for a training course for junior doctors at her local hospital. She told her story about ME and emphasised the importance of doctors listening to their patients. Website here Thread here Cosmopolitan: 9 Rounds of Electroshock Therapy. 6 Years Lost. All Because Her Doctors Got It Horribly Wrong. A heartbreaking article about an ME patient who was misdiagnosed and mistreated by medical professionals. Article here Thread here ............................................................ Useful resources Bateman Horne Center Online Education Series, 2018. ''A six part educational video series designed to empower patients and their advocates with the tools to communicate with their healthcare providers''. Topics - Diagnosis, PEM, sleep, pain, cognitive impairment, orthostatic intolerance. BHC link here Thread here ME Association ME RESEARCH SUMMARY ''This leaflet provides a summary of what biomedical research is telling us about M.E. It considers key symptoms, common triggers, and explains how various aspects of disease pathology could be linked to specific symptoms.'' 5 page PDF document here Thread here Solve ME/CFS Initiative ME/CFS RESEARCH: A YEAR IN REVIEW An interactive guide to the promising new discoveries of 2018. Interactive version here Blog version here Thread here ..................................................................... Research news Australia The National Centre for Neuroimmunology and Emerging Diseases (NCNED) at Griffith University announced at its recent International Conference the establishment of the Consortium Health International for ME (CHIME) including international researchers. Thread here ................................................. Biomedical research hypothesis International Journal of Immunopathology and Pharmacology '' A compromised paraventricular nucleus within a dysfunctional hypothalamus: A novel neuroinflammatory paradigm for ME/CFS'' by Mackay et al. Suggest that if the hypothalamic paraventricular nucleus (PVN), which is responsible for absorbing and processing "stress" signals, were affected by neuroinflammation, the ongoing hypersensitivity of ME/CFS patients could be explained. Paper here Thread here ............................................................ Population study Pain Research and Management ''Physical Activity and Sleep in Chronic Fatigue Syndrome and Fibromyalgia Syndrome: Associations with Symptom Severity in the General Population Cohort LifeLines'' by Joustra et al. Questionnaire data from a general population cohort in the Netherlands. Conclusion: ''On average, patients with CFS and FMS sleep longer and are less physically active than controls and both high and low levels of physical activity and sleep duration are associated with higher symptom severity.'' Limitations - low reliability of questionnaire data. Paper here Thread here .............................................................. Psychosocial research Frontiers in Psychiatry - Psychosomatic Medicine ''A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow up'' by Bjarte Stubhaug et al. 305 patients, 4-day outpatient clinic - mindfulness, CBT, physical activity and writing sessions. Oxford criteria, no control group, subjective outcomes. Study claims significant clinical changes. Lead author, psychiatrist Bjarte Stubhaug, has a doctorate on CFS or neurasthenia, which is the same according to him. He runs the clinic and has a contract with the public health service. Not a recommendation. Study here (full text not yet available) Thread here ......................................................... Situations vacant UK ME Association Social Media Manager, part time working from home. Deadline 14th January 2019. Details here Thread here ............................................................
Seasons Greetings to all our readers ____________________________________ Week beginning 17th December 2018 News Sweden: Official report on ME Agency for Health Technology Assessment and Assessment of Social Services (SBU) has published a report on ME. The report says there are no documented treatments thus far, poor prognosis, little research and lack of knowledge among health care personnel. It emphasises the need for specialised ME care and the importance of strict diagnostic criteria. Summary and report here (Swedish) Thread here Australia The Australian Government National Health and Medical Research Council (NHMRC) ME/CFS Advisory Committee draft report has been released for public consultation. Submissions by February 18, 2019. The report covers research and clinical care. Details here Thread here Belgium The government has extended its ME/CFS-convention until 2020. It suggests using the IOM-criteria as these put more emphasis on PEM. It keeps CBT but removes GET, and says activity should be within the patient's personal limits. It says the purpose of treatment is rehabilitation. Thread here USA #MEAction had a meeting with several representatives from the National Institutes of Health, including director Dr Francis Collins, on December 7. According to #MEAction there were some good discussions but it was evident that NIH is not yet ready to significantly accelerate its approach to ME. Article here Thread here #post 33 USA Following the endowment of a chair in family medicine, the Quinnipiac Medical School in Connecticut will add ME/CFS to the medical curriculum. Thread with press release here ......................................................... Biomedical research talks Dr Karl Morten (Oxford University) gave a lecture in New Zealand about his research into ME/CFS. Lots of interesting news about his and other people's research in genetics, metabolomics, mitochondria, the microbiome etc. and his plans for future research including an application for £1.6 million funding. Video here ME Association article with links to transcript and slides here Thread here Dr Jarred Younger's talk on his research on brain inflammation in ME/CFS is now available on You Tube. Video here Thread here ...................................................... The media, the SMC and a small biomedical research study of fatigue The research: Psychoneuroendocrinology ''Persistent fatigue induced by interferon-alpha: a novel, inflammation-based, proxy model of chronic fatigue syndrome'' by Russell, Pariante et al. Small study using post interferon treatment fatigue (in patients with chronic Hepatitis C) as a proxy for CFS claims this shows an overactive immune response may be the cause of ME/CFS. The comparison CFS group used the Oxford definition. Full paper now available here Thread here The media coverage: Following a UK Science Media Centre (SMC) briefing for journalists there was widespread coverage of this research, hyping it as important new evidence that ME/CFS is a real physical condition which may be caused by an overactive immune response. Kings College London briefing here SMC briefing here BBC Wales (time 16.44) here Reuters here For links to many more media items in the UK and worldwide, see this post. Thread discussion here Commentary and critique: #MEAction summary here ''Have scientists found an explanation for the onset of ME/CFS?'' by Nick Brown here ''Trial by Error: The New Interferon “CFS” Study'' by David Tuller here ................................................................. Biomedical Research International Journal of Sports Medicine ''Peak Oxygen Uptake in CFS/ME: A Meta-Analysis'' Franklin et al. Abstract concludes: ''Synthesis of the available evidence indicates that CFS/ME patients have a substantially reduced VO2 peak compared to controls.'' Article here Thread here ............................................................. Epidemiology and other research Frontiers in Pediatrics, Pediatric Neurology ''Estimating Prevalence, Demographics and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning'' by Proskauer et al. Large machine learning study of prevalence of ME and CFS in USA insurance claims data showed prevalence of 857/100,000, so it is not a rare disease. Also showed higher costs than MS or Lupus, and about 35 to 40% of the people with ME/CFS are male. Abstract here (provisionally accepted) Thread here Diagnostics ''Myalgic Encephalomyelitis or What? The International Consensus Criteria'' by Frank Twisk. Argues that the definitions of CFS, ME and ME-ICC are different and not interchangeable and define different but overlapping subgroups of patients. Paper here Thread here ................................................
Week beginning 24th December 2018 News News in Brief first anniversary This post completes the first year of the weekly Science for ME News in Brief. Happy New Year to all our readers. .................................................... Trial by Error by David Tuller Australian Draft Report Seeks Comments The report highlights the need for up to date clinical guidelines, the need for more biomedical research into ME/CFS, the dangers of GET, and the difficulties faced by those who need disability benefits. Tuller also discusses the role of Prof Lloyd, a leading proponent of GET. Comments by February 18th. Draft report here David Tuller's article here Thread here "Talk is Cheap," Patients Tell NIH About the recent meeting between US NIH director Francis Collins and other agency officials with five representatives from #MEAction. The article includes reactions from the patient community. Article here Thread here ..................................................... Biomedical research reviews Systematic Reviews ''A systematic review of enteric symbiosis in CFS/ME'' by Du Preez et al Inconclusive review examining evidence for the presence of abnormal microbial ecology in CFS/ME in comparison to healthy controls. Seven studies were included. For future research on this field the researchers recommend consistent criteria for diagnosis of CFS/ME, reduction of confounding variables and inclusion of more severe cases of CFS/ME. Paper here Thread here Journal of Pain Research ''The link between idiopathic intracranial hypertension, fibromyalgia, and chronic fatigue syndrome: exploration of a shared pathophysiology'' by Hulens et al. Compares literature data. Presents the hypotheses that as symptoms of idiopathic intracranial hypertension are common also for patients with fibromyalgia and CFS, there might be a shared underlying physiopathology of increased cerebrospinal pressure. Paper here Thread here ................................................... Rare Misdiagnoses Journal of Clinical Densitometry ''Hypophosphatasia in adults: clinical spectrum and its association with genetics and metabolic substrates'' by Laurent et al. Rare genetic bone disorder that causes fractures and fatigue is occasionally misdiagnosed as CFS and wrongly treated. Paper here Thread here Hepatology Communications ''Acute Hepatic Porphyrias: Review and Recent Progress'' by Wang et al. Occasionally patients with CFS are wrongly diagnosed and treated as having AHP when they do not. This can lead to complications. Paper here Thread here .............................................................. Psychosocial Research Internet Interventions ''“It's not one size fits all”: the use of videoconferencing for delivering therapy in a Specialist Paediatric Chronic Fatigue Service'' by Haig-Ferguson, Crawley et al. Small study - young people, parents and therapists asked their experience of using Skype for CFS treatment. Concludes it can be a useful addition to face to face support. Paper here Thread here .............................................................. Disability benefits research Australia Conference paper: ''ME/CFS: NDIS and the disability hurdle'' by Geoffrey Hallmann. Shows that the Australian NDIS is misusing the Dubbo study and other flawed research to deny disability benefits to people with ME. Paper here Thread here ............................................................ Advocacy Invest in ME Research has released a 6 minute extract from the address to its 2018 conference by Carol Head, CEO of Solve ME/CFS Initiative. The extract is titled 'ME As A Worldwide Civil Rights Issue'. You Tube video here Thread here ............................................................... Coming events UK Invest in ME Research 14th IiMER International Conference 31st May 2019. Earlybird rates available before 3rd March. No details of speakers yet. Details here Thread here .............................................................
