This thread has a Science for ME 'News in Brief' post for each week in June 2021 written by a team including @Trish and @Kalliope. Scroll down to see this week's news.
Week beginning 31st May 2021 News, articles and advocacy Cochrane Hilda Bastian, lead of the independent advisory group (IAG) on updating the Cochrane review on exercise therapy for ME/CFS has published a progress report. New members of the IAG and author team have been announced. These include well-known advocates such as Mary Dimmock, Penelope McMillan, and Jaime Seltzer. S4ME forum members, however, have raised several concerns about the new announcements. Announcement here Thread here Norway A planned study in Norway on the alternative method Lightning Process as treatment for ME had its ethical approval withdrawn and thus the study will not take place. The decision was made by the Research Committees for Medicine and Health Sciences and they state it was due to the study's poor trial design in addition to financial conflict of interest. The committee´s decision was unanimous and can not be appealed. Summary in English by Nina E. Steinkopf here Thread here Europe On 9 June, the European ME Alliance (EMEA) and the European Federation of Neurological Associations (EFNA) are arranging a multi-stakeholder, roundtable meeting on ME/CFS in Europe. Director General of the World Health Organization (WHO) Dr Tedros Ghebreyesus will contribute to the roundtable. Announcement here Thread here Canada ICanCME research funding opportunity: 'New Frontier ME Discovery Grant Program - Discovery Grants promote the development of new interdisciplinary collaborative ME research teams, foster research excellence, and provide a stimulating environment for research training.' Deadline for proposals Thursday July 15th 2021. Details here Thread here USA NSU Institute for Neuro-Immune Medicine conference video "Understanding ME/CFS Today: A Clinical & Research Approach". The 3 hour video is available. Speakers include Nancy Klimas with a research update. Topics include sleep, pacing and several alternative therapies. Video here Thread here USA A bill was passed on May 20th in New York State Senate calling ".. to amend public health law, in relation to the myalgic encephalomyelitis/chronic fatigue syndrome education and outreach program". Bill here Thread here UK Forward ME The minutes of the 12th May meeting are available. Topics discussed included its steering group, aims, and goals for 2021. Minutes here Thread here ................... Biomedical research Frontiers in Medicine preprint provisionally accepted "The Enterovirus Theory of Disease Etiology in ME/CFS: A Critical Review" by O'Neal and Hanson. The authors conclude that studies of previous outbreaks provide evidence of enterovirus infection, but that more research is needed using the latest methods to find out whether latent infection could be contributing to symptoms. Article here Thread here Journal of Clinical Medicine "Tolerability & Efficacy of s.c. IgG Self-Treatment in ME/CFS Patients with IgG/IgG Subclass Deficiency: A Proof-of-Concept Study" by Scheibenbogen et al. From the abstract: '... a proof of concept open trial with s.c. IgG in 17 ME/CFS patients suffering from recurrent infections and mild IgG or IgG subclass deficiency to assess tolerability and efficacy'. 12 showed some improvement on subjective questionnaires at 12 months, and 5 stopped due to adverse events or worsening. Paper here Thread here Sensors "Analysis of Gender Differences in HRV [heart rate variability] of Patients with ME/CFS Using Mobile-Health Technology" by Capdevila et al. Unlike the differences in HRV found in their previous study between females with ME/CFS and controls, no difference was found in men from controls. ME/CFS patients, particularly women, showed some relationship between HRV and fatigue severity. Paper here Thread here Journal of Clinical Medicine "Post-Exertional Malaise May Be Related to Central Blood Pressure, Sympathetic Activity and Mental Fatigue in CFS Patients" by Kujawski et al Of 101 patients who met the Fukuda criteria, 82 reported suffering PEM and 19 did not. Patients with PEM reported higher fatigue and mental fatigue on questionnaires, and had lower central systolic blood pressure. Paper here Thread here .................... Other research Journal of Psychosomatic Research "Adverse outcomes in trials of graded exercise therapy for adult patients with chronic fatigue syndrome” by White & Etherington In this review, the authors argue that there is no evidence of excess harm with graded exercise therapy in either self-rated deterioration or by withdrawing from treatment. One of the authors of this paper, Peter White, is co-investigator of three of the exercise trials in the review and lists “consultancy to a re-insurance company” as a conflict of interest. Article here Thread here Psychological Medicine “Role of stressors in adult fibromyalgia – a response to Kaleycheva et al.” by Crawford. Joan Crawford, counseling psychologist and forum member, criticizes a recent review on the impact of lifetime stressors on the risk of developing fibromyalgia in adulthood. Crawford highlights that all the case-control studies in the review used interviews or questionnaires to elicit people's retrospective memories and that this is far from a reliable method. Article here Thread here Healthcare “The Impact of Severe ME/CFS on Student Learning and K–12 Educational Limitations” by Faith Newton. This article outlines suggestions for the type of education that students with ME/CFS should be receiving and offers a preliminary sketch of the web of resources and emergent techniques necessary to achieve these outcomes. Article here Thread here Healthcare “Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected” by Fennell et al. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. A composite case example is used to illustrate the impact of the illness. Article here Thread here ...................... Coming events Solve M.E. Webinar: Harnessing the Power of Community for Progress in the Fight Against ME/CFS June 9, 2021 02.00 PM Pacific Time."Tune in for a conversation between Solve M.E. President Oved Amitay and Director of Advocacy and Engagement Emily Taylor as they discuss the ways in which community involvement is driving our biggest successes, and why the time is right for taking bold new steps in the fight against ME/CFS." Registration here Thread here ..................... Covid-19 and ME Canada The newspaper Le Devoir has published three articles about ME, post viral illness and Long Covid. Contains interviews with patients as well as researcher Simon Décary who tells about how ME patients helped develop pacing as new conceptual framework for rehabilitation of Long Covid patients and says we are decades behind when it comes to research. ME researcher Alain Moreau tells about his research projects and the obstacles of insufficient funding. Language: French. Articles here, here and here Thread here Somatosphere "Long Covid, chronic fatigue syndrome and women: the shadow of hysteria" An article by biologist and historian Ilana Löwy providing history and context to the psychosomatization of ME and long Covid. "The dominance of the “biopsychosocial” model of CFS, with its emphasis on the role of thought and behavior rather than pathology can explain, activists believe, why long Covid patients – in great majority women, a group with a long history of neglect and “psychiatrization” of their complaints – are now facing such limited options in clinics." Article here Thread here The Independent Letter: People with chronic fatigue syndrome have suffered long Covid symptoms for years - why did nobody care? Letter here Thread here ...................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 7th June 2021 News, articles and advocacy Ethical approval of Lightning Process study withdrawn Norwegian research authorities recently withdrew ethical approval of a planned study on the alternative method Lightning Process as ME treatment due to conflicts of interest and poor trial design. The story was covered in national media by Khrono here, Forskning.no here and here, NRK here David Tuller has also covered the story: "Norway rejects New Clinical Trial of Woo-Woo Lightning Process" here Thread here Trial by Error by David Tuller More Disinformation from Professor White in Journal of Psychosomatic Research A critique of a recent paper from professor White where he claimed that graded exercise therapy is effective for CFS. Tuller questions how the journal can allow a platform for such claims. Article here Thread here UK Action for ME In the first of a series of webinars, CEO Sonya Chowdhury talks about the work of AfME, including reporting on their involvement with DecodeME, the Priority Setting Partnership, CMRC and Forward ME. Video here (45 minutes) Thread here UK ME/CFS Priority Setting Partnership A reminder of the survey to find out topics and questions people with ME, carers and clinicians would like to see researched. You can submit more than once. Survey here (closes 5th July) Thread here .............. Biomedical news Biomedical ME Conference A report from a recent digital biomedical ME conference in Stryn, Norway is now available in English. Includes summaries of lectures from David Tuller, Mady Hornig, Björn Bragée, Jonas Bergquist, Karl Johan Tronstad, Ingrid Gurvin Rekeland, Øystein Fluge, Kristian Sommerfelt, Ola Didrik Saugstad, Linn Christin Skjevling, Line Melby, Anne Kielland and Jørgen Jelstad. Report here Thread here USA Los Angeles based company DxTerity is recruiting participants for an ME/CFS study called CHROME. Participants sign up online and send fingerprick and urine samples by mail. Company website here Study information here Thread here ............... Biomedical research Healthcare "Comparing Idiopathic Chronic Fatigue [ICF] and ME/CFS in Males: Response to Two-Day Cardiopulmonary Exercise Testing Protocol" by van Campen and Visser. 2-day CPET results from 25 ICF and 26 ME/CFS patients were compared. From the abstract: 'ME/CFS patients showed a deterioration of performance on CPET2 as reflected by VO2 and workload at peak exercise and ventilatory threshold, whereas ICF patients showed improved performance on CPET2 with no significant change in peak workload.' The results in the ICF patients were similar to healthy sedentary controls. Paper here Thread here Psychoneuroendocrinology "Kynurenine metabolites and ratios differ between Chronic Fatigue Syndrome, Fibromyalgia, and healthy controls" by Groven et al. Blood plasma was analysed for metabolites in the kynurenine pathway from female patients: 49 CFS, 57 FM; and 54 healthy controls. The authors conclude 'Our study indicates associations between kynurenine metabolism and CFS and FM as well as characteristic symptoms like fatigue and pain.' Paper here Thread here Trends in Molecular Medicine "Insights from ME/CFS May Help Unravel the Pathogenesis of Post-Acute COVID-19 Syndrome" by Komaroff and Lipkin. 'Here we summarize what is known about the pathogenesis of ME/CFS and of acute COVID-19, and speculate that the pathogenesis of post-COVID-19 syndrome in some people may be similar to that of ME/CFS. We propose molecular mechanisms that might explain the fatigue and related symptoms in both illnesses, and suggest a research agenda for both ME/CFS and post-COVID-19 syndrome.' Article here Thread here ................ Other research Clinical Medicine "Warning Signals of Post-Exertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Retrospective Analysis of 197 Patients" by Ghali et al. This French study looked at new or non-typical symptoms preceding baseline symptom exacerbation in ME/CFS patients as these may act as warning signals for PEM. Article here Thread here Psychological Medicine “Efficacy of therapist-delivered transdiagnostic CBT for patients with persistent physical symptoms in secondary care: a randomised controlled trial” by Chalder et al. This study tested the efficacy of cognitive behavior therapy (CBT) for patients with medically unexplained symptoms in secondary care. The results showed that CBT did not lead to a significant improvement on the Work and Social Adjustment Scale, the primary outcome of the study, when compared to standard medical care. Article here Thread here ............... Articles on the psychosomatic approach to ME/CFS PsyArchiv "The rise and fall of the Wessely school" by David Marks In this preprint, psychologist and editor of the Journal of Health Psychology, David Marks dissects the Wessely School (WS) approach to medically unexplained symptoms and ME/CFS. Marks concludes that “The lack of robust supportive evidence, fallacious causal assumptions, inappropriate and harmful therapies, broken scientific principles, repeated methodological flaws and unwillingness to share data all give the appearance of cargo cult science.” Article here Thread here Scottish Legal News "Orthodoxy on Trial" by David J Black, author, playwright and journalist. This 4 part series of medico-legal articles reveals some of the history and reasons why ME/CFS has been wrongly classed as psychogenic for so long. Part 1: The pathogenesis of a diagnosis Part 2: Dominance by Induction, Part 3: Did flawed science beget flawed law?, Part 4: So long, psychogenia – but not quite yet, Thread here Blog: Healthcare Hubris The blog Healthcare Hubris has published a new series of four blogs about the structural dimensions of the biopsychosocial model. Part 1 Beginnings; Part 2 Constructs and propaganda; Part 3 Academic-state-corporate nexus; Part 4 Downstream effects of upstream corruption Blog here Thread here ................. Covid-19 and ME Blog Can Long-Covid be Cured with the Mind: Expert Patient or Nutty Professor? Dr. Keith Geraghty is guest blogging at David F Mark's blog. He tries to piece together Professor Paul Garner's accounts of his own mind-over-matter-recovery and is left with some questions. 'Paul Garner’s recovery may have had very little to do with his mind, yet his mind now tells him it was the most important factor. That is perhaps the true power of the mind. The mind subjectively validates the stories you tell about yourself.' Article here Thread here Podcast JOSPT Insights: Stop, rest, pace - the road ahead for long COVID, with Sabrina Poirier & Dr Simon Décary Great interview from Journal of Orthopaedic & Sports Physical Therapy with patient advocate Poirier and researcher Décary following up their important editorial from March on Long Covid, ME and rehabilitation. "Sabrina Poirier and Dr. Simon Décary are working tirelessly to ensure the mistakes and harms inflicted on so many people living with postviral illness are not repeated for people living with long COVID". Duration: 29 minutes. Podcast here Thread here Nature The four most urgent questions about long COVID On underlying biology of long COVID and its relationship with other post-infection syndromes. "Some people with long COVID will probably meet the diagnostic criteria for ME/CFS, according to Komaroff and his colleague Lucinda Bateman, founder of the Bateman Horne Center in Salt Lake City, Utah, which specializes in treating ME/CFS. But there do seem to be differences: for instance, people with long COVID are more likely to report shortness of breath than are those with ME/CFS.." Article here Thread here Video Fatigue, Pacing and PEM Management - Lessons from ME/CFS - With Dr Ben Marsh An informative and thorough conversation between Dr Asan Khan and Dr Ben Marsh about lessons the Long Covid community can learn from the ME community. Covers themes including symptoms, PEM and its physiology, GET/CBT and more. Hosted by Gez Medinger. Duration: 41 minutes. YouTube film here Thread here BBC Future What Covid-19's long tail is revealing about disease Thorough article about possible mechanisms for Long Covid and post viral illness in general. Mentions parallels to ME and includes interviews with Amy Proal and David Kaufman. Article here Thread here NIH RECOVER, an initiative from the National Institutes of Health (NIH), seeks to understand, prevent, and treat PASC, including Long COVID. PASC is a term scientists are using to study the potential consequences of a SARS-CoV-2 infection. The website for RECOVER has recently been launched. Says under FAQs that this initiative may help improve the understanding of CFS. Website here Thread here Other items of interest British Medical Association BMA board of science in discussion about long COVID. Online event on Wednesday 16 June 10.00 AM. Chaired by Professor Dame Parveen Kumar and Dr. David Strain. More information here Thread here Denmark Opinion piece in Politiken by Jesper Mehlsen, Rikke Olsen and Peter La Cour on links between Long Covid and ME and on the urgent need for more awareness. Opinion piece here (paywalled) Thread here People Management How to manage employees with long Covid Article here Thread here ................. S4ME social media: Facebook, Twitter and You Tube Edited to remove a duplicate item.
Week beginning 14th June 2021 News, articles and advocacy UK - Chronic Illness Inclusion Project "Submission to the Department of Health and Social Care’s Inquiry into Women’s Health and Wellbeing in England" This 11 page hard hitting report is based on on a survey with nearly 800 respondents, most of whom have ME/CFS, fibromyalgia or Long Covid. The report is very critical of health and social care providers, with problems including stigma, disbelief, gaslighting, harmful treatments, the 'MUS' label, diagnostic delay and missed diagnoses, and neglect of housebound patients. Submission here Thread here #MEAction "Cochrane Redux" Jamie Seltzer, Director of Scientific and Medical Outreach at #MEAction, is part of the independent advisory board led by Hilda Bastian who will analyse concerns about the disputed Cochrane review on exercise as treatment for ME. In this article she writes about how and why the advisory board came to be and the work that lies ahead. Article here Thread here ME/CFS Skeptic Forum member Michiel Tack has written a blog post about MetaBLIND, likely the largest study on the effect of blinding in randomized trials to date. Tack contacted the authors to obtain the original dataset and found several major problems in the comparisons between blinded and unblinded trials. Article here Thread here ME/CFS Skeptic The blog ‘ME/CFS Skeptic’ made a summary of the 419-page long draft report on the management of ME/CFS that was commissioned by the CDC. Article here Thread here .................... Trial by Error by David Tuller "#MEAction's Chronic Illness Survey; Patient's Research Informs CDC's Long-COVID Advice" A summary of a few topical issues including the ongoing survey The Chronic Illness Survey Adventure (including an excerpt from a recent Q&A about the survey with Jamie Seltzer and Dr. Mady Hornig) as well as the new guidelines from CDC on Long COVID. Article here Thread here and here "Null Outcome Presented as Success in Yet Another CBT Trial from Prof Trudie Chalder" A thorough and critical walkthrough of a recent paper from Prof. Chalder et al titled: 'Efficacy of therapist-delivered transdiagnostic CBT for patients with persistent physical symptoms in secondary care: a randomised controlled trial'. Tuller shows how the study failed to produce positive treatment effects, even if the researchers themselves cast their findings in a positive light. Article here Thread here ............... Biomedical news and research Genetics Unzipped UK Genetic Society podcast "Why me? Searching for genetic susceptibility to chronic fatigue syndrome and pain" In the first 16 minutes of this podcast Professor Chris Ponting and Andy Devereux-Cooke talk about the DecodeME project, how it is hoped to help understanding of ME, and patient involvement in project management. Website with links to the podcast and transcripts here Thread here Interviews by journalist and TV documentarist Paal Schaathun with Professor Kristian Sommerfelt, PHD candidate Ingrid G. Rekeland and Professor Øystein Fluge. The interviews were made in connection to a recent digital ME conference in Norway and have English subtitles. Duration 19 minutes. Interviews here Thread here Frontiers in Medicine - Infectious Diseases provisionally accepted "Herpesviruses serology distinguishes different subgroups of patients from the ME/cfs Biobank" by Dominguez et al. Data from previous studies of herpesvirus in over 200 patients in the UK ME/CFS biobank was used. The results were reanalysed with patients divided into 4 subgroups according to the disease trigger (known or unknown, infectious or not) and compared with data from healthy controls. The abstract concludes: 'In summary, herpesviruses serology could distinguish subgroups of ME/CFS patients according to their disease trigger.' Article here Thread here European Society of Medicine: Medical Research Archives "The ME/CFS patients with joint hypermobility show larger cerebral blood flow reductions during orthostatic stress testing than patients without hypermobility: A case control study" by van Campen et al. 200 female ME/CFS patients, half with joint hypermobility syndromes (JHS) and half without were compared. Those with JHS had more POTS and showed larger CBF reductions during orthostatic stress testing (tilt table). This larger CBF reduction is independent of the heart rate and blood pressure results of the orthostatic stress test. Paper here Thread here .................. Other research Health Care for Women International “The circuit of symbolic violence in [CFS/ME]: A preliminary study” by Xavier Gimeno Torrent. The author analyzed letters to the editor by CFS patients to three national Spanish newspapers. 13 mechanisms of symbolic violence were identified including, amongst others: non-recognition, condescension,, delegitimization, silencing, invisibilization, isolation, and self-blaming. Article here Thread here Journal of the International Neuropsychological Society “Performance Validity and Outcome of Cognitive Behavior Therapy in Patients with Chronic Fatigue Syndrome” by Roor et al. The authors speculated that lower performance validity test on a cognitive test (the Amsterdam Short-Term Memory test) would be associated with worse treatment outcome following cognitive behavioral therapy in ME/CFS patients and to lower adherence to treatment. The data, however, did not fully support this hypothesis: scores on the test were not significantly associated with outcomes at follow-up. Article here Thread here ................. Covid-19 and ME USA Centers for Disease Control (CDC) "Post Covid Conditions: Interim Guidance" updated June 2021. The report suggests most can be managed in primary care. 'Healthcare professionals and patients are encouraged to set achievable goals through shared decision-making and to approach treatment by focusing on specific symptoms (e.g., headache) or conditions (e.g., dysautonomia); a comprehensive management plan focusing on improving physical, mental, and social wellbeing may be helpful for some patients.' Document here Thread here World Physiotherapy "Briefing paper 9: Long COVID, physical activity and exercise" This 30 page document focuses on safe approaches to physical activity in Long Covid, produced as a collaboration of 50 people from many organisations, some familar to us such as Physios for ME and Workwell. Recommendations include screening patients for post exertional symptom exacerbation (PESE) and education about pacing. Document here Thread here The World Health Organization (WHO) hosted a webinar on long covid. Speakers included ME/CFS researchers such as Nancy Klimas, Jarred Younger, Maureen Hanson, and Petter Brodin. Thread here The American Medical Association House of Delegates have adopted a policy supporting the development of an ICD-10 code for Long COVID and other novel post-viral syndromes. In a separate action delegates moved to address post-viral syndrome. "Patients with post-viral syndrome also report stigmatization, marginalization and have higher rates of suicide. This is in part due to the lack of understanding of their condition by physicians and the public, according to resolution presented at the AMA Special Meeting." Article here Thread here The Guardian Why are women more prone to long Covid? Article presents different hypothesis for higher prevalence of post viral illness in women compared with men. Draws parallels to ME and has interviews with, among others, immunologist Professor Akiko Iwasaki. Article here Thread here The Times has published a letter by the ME Association and Dr Charles Shepherd concerning a recent disappointing article in the newspaper about Long Covid."It is to be hoped that the emergence of Long Covid will put an end to people having their prolonged post-viral illnesses being dismissed as purely psychological.." Letter here Thread here Psychoneuroendocrinology "Hypothesis: Interleukin-6 as potential mediator of long-term neuropsychiatric symptoms of COVID-19" by Kappelmann et al The authors highlight Long COVID symptoms include fatigue, sleeping difficulties, depression and anxiety which they suggest may arise from effects of interleukin 6 (IL-6) on the brain, and may be a target for treatment. Article here Thread here Molecular Psychiatry "Chronic post-COVID-19 syndrome and chronic fatigue syndrome: Is there a role for extracorporeal apheresis?" by Bornstein et al. The article refers to a recently published observational study of this treatment with 10 CFS patients by Scheibenbogen et al. The authors, some from a private clinic that offers the treatment, speculate that it may also help post-Covid patients. Article here Thread here La Revue de Médecine Interne "“Long-haul COVID”: An opportunity to address the complexity of post-infectious functional syndromes" by Cathébras et al This French team take a BPS approach to Long Covid and other 'functional' syndromes, and describe patient groups as 'activists'. Article here Thread here .................. S4ME social media: Facebook, Twitter and You Tube
Week beginning 21st June 2021 News, articles and advocacy Emerge Australia has appointed a new CEO, Anne Wilson. 'She has worked across the education, health and varied not-for-profit sectors focussing on capacity building across key areas of advocacy, education, research and service delivery among others.' Article here Thread here Solve M.E. Webinar "Harnessing the Power of Community for Progress" A recording of The Solve M.E. webinar from June 9th is now on YouTube. "This webinar with Solve M.E. President Oved Amitay and Director of Advocacy and Engagement Emily Taylor includes a discussion of the ways in which community involvement is driving our biggest successes." Video here Thread here Solve M.E. - Research 1st Newsletter The Spring 2021 issue of the Research 1st newsletter is now available. It includes "insights on the path to diagnostics for ME/CFS and how studying Long COVID could pave a short-cut, as well as a look at how we’re leveraging the You + ME Registry and Biobank to harness the power of Big Data to understand both ME/CFS and Long COVID." PDF version here Thread here Trial by Error by David Tuller Lowenstein's Guardian Opinion; Eliot Smith's Post-NICE View; Tack's Take on Blinding Study A recommendation and short summaries of these excellent articles. Article here Thread here UK ME Association guest blog "The Shame" tells of the author's struggles with self blame, and with the judgemental attitude of others, especially doctors, to people with ME. Article here Thread here ............. Biomedical news and research Brain Health and Clinical Neuroscience "Migraine is more than just headache: Is the link to chronic fatigue and mood disorders simply due to shared biological systems?" by Karsan and Goadsby. The authors say migraine is a more complex disorder than just headache, involving sensory and other symptoms, and hypothesise that it 'should be considered a neural disorder of brain function...' They suggest associations with other disorders such as CFS and depression 'may allude to the inherent sensory sensitivity of the migraine brain and shared neurobiology and neurotransmitter systems rather than true co-morbidity.' Article here Thread here MedRxiv preprint "Dysregulation of the Kennedy Pathway and Tricarboxylic Acid Cycle in ME/CFS" by Lipkin, Hornig et al. Data from metabolomic analysis of plasma from 106 ME/CFS patients and 91 healthy controls was analysed. From the abstract: 'Our findings are consistent with earlier ME/CFS work indicating compromised energy metabolism and redox imbalance, and highlight specific abnormalities that may provide insights into the pathogenesis of ME/CFS.' Paper here Thread here .............. Other research Sociology of Health and Illness “Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process” by de Boer Based on information obtained through a Freedom of Information Request, Marjolein Lotte de Boer criticizes patient representatives on the 2018 Dutch ME/CFS Health Council for focusing on a biomedical model. De Boer argues that “such a dominant biomedical patient participatory practice is ambiguous in terms of its ability to correct epistemic injustices towards ill people.” Article here Thread here Medicina “Medical Care Situation of People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Germany” by Froehlich et al. The authors conducted an online survey with 499 participants that showed that ME/CFS patients in Germany are medically underserved. The authors also tested a German-language version of the DePaul Symptom Questionnaire Short Form (DSQ-SF) as a tool for ME/CFS diagnostics and research. Article here Thread here ................ Covid-19 and ME BMJ "Chronic fatigue syndrome and long covid: moving beyond the controversy" by Melanie Newman (freelance journalist) This feature article in BMJ disappointingly presents Professor Sharpe's version of the GET/PACE debate and Professor Garner warns against emphasising PEM. But Dr. Shepherd from the ME Association points to reports of ME patients deteriorating following GET and Dr Ben Marsh says there is a need to screen patients for PEM in rehabilitation. Article here Rapid responses here Thread here BMJ in the same edition has two shorter pieces: "How power imbalances in the narratives, research, and publications around long covid can harm patients" by Chew-Graham et al. Says patients feel gaslighted by doctors who dominate research and media output on Long covid, and this power imbalance needs changing. Article here Thread here "How can we manage covid fatigue?" by BMJ editor in chief, Fiona Godlee. In an editorial that covers wider Covid and related NHS issues as well, Godlee repeats Sharpe's viewpoint of 'researchers braving this often toxic academic terrain' and questions whether the removal of GET by NICE may '... risk sentencing patients to a lifetime of symptom monitoring and long term disability', though she acknowledges that some clinicians are screening for PEM. Article here Thread here The Guardian "I rested my way to recovery from long Covid. I urge others to do the same" Excellent opinion piece by Fiona Lowenstein, journalist and founder of the health justice organization Body Politic. She writes about her experience as a Long Covid sufferer, and how advice and lessons from the ME community, combined with support from people around her, allowed her to rest and pace. She has now mostly regained her old way of life. Article here Thread here Bloomberg "Scientists are starting to wonder just how many mysterious ailments may stem from viral or bacterial infections" Opinion piece by science journalist Faye Flam on how Long Covid has led to emerging attention to post viral illness. Includes interviews with among others NIH director of clinical neurology Dr. Avindra Nath. Article here Thread here UK - Trades Union Congress "Workers' experiences of long Covid - A TUC report" As well as conducting their own online survey, this report refers to a report by the Chronic Illness Inclusion Project, and says: 'Going forward it is imperative employers understand energy impairments and learn the lessons from the previous experiences of people with ME/CFS, so that appropriate reasonable adjustments are put in place for workers who have long Covid, ME/CFS or other energy limiting impairments.' Report here Thread here USA Video from the WNYC 2021 Health Convening on COVID-19, recorded on June 23, 2021, is now available. Panelists Dr. Mady Hornig (Associate Professor of Epidemiology at the Columbia University Medical Center) and Dr. Walter Koroshetz (Director of the National Institute of Neurological Disorders and Stroke (NINDS)) are speakers in the session called 'The Long-Term Effects & Chronic Fatigue Syndrome.' Video here Thread here New Scientist Leader and feature article. Both paywalled. Long Covid: We have ignored post-viral syndrome for too long here Long Covid: Do I have it, how long will it last and can we treat it? here Thread here .................. S4ME social media: Facebook, Twitter and You Tube
Week beginning 28th June 2021 News, articles and advocacy Doctors with ME This new organisation, founded by Dr Hng and with Directors and Honorary Fellows well known in the ME field, has launched its website and will soon be open for applications for membership. It is a 'global professional association for medical practitioners, scientists and researchers in the field of ME'. Patients will be invited to register as supporters. Website here Thread here "Position statement: 2021 NICE guideline update" supports the removal of GET and CBT as treatments for ME/CFS and highlights the need for more research and better patient care, including for long Covid. Statement here Thread here Sweden Written report from a recent open hearing in the Swedish Parliament about ME/CFS. The report contains transcription of talks by ME sufferer Björn Eklund, leader of patient organisation RME Kerstin Heiling, dr Per Julin, dr. Bjorn Bragée, dr. Jonas Axelsson, professor Anders Rosén, Désirée Pethrus and Anna-Lenad Hogerud from regional councils as well as Thomas Lindén from the National Board of Health and Welfare. Report here (Swedish) Thread here UK Action for ME have appointed Dr. David Strain as their Medical Advisor. Dr Strain of Exeter Medical School is also a consultant to the Devon M.E./CFS specialist service and he leads the British Medical Association’s Covid-19 response team. He says of ME/CFS "... This disease continues to be misunderstood by some in the medical community. By working with Action for M.E. I will continue to address the stigma and misinformation that exists and offer advice and guidance to enhance their work." Article here Thread here Norway A planned study on the controversial alternative method Lightning Process recently got stopped when the National Committee for Medical and Health Research Ethics (NEM) considered the trial as "unacceptable" and withdrew its ethical approval. This week there was a debate about the decision on national TV with professor of psychology and leader for the trial Leif E. O. Kennair, a representative from NEM, patient advocate Nina E. Steinkopf, a former patient and the leader for the national competence service for ME/CFS dr. Ingrid Helland. TV debate here Thread with transcription in English here Chairman of the Norwegian ME Association wrote an opinion piece about why this was the right decision by NEM here Thread here Europe In honor of the one-year anniversary of the European ME/CFS resolution, Renew Europe, Spanish MEP Jordi Cañas, and patient organization CONFESQ hosted a webinar on June 30, titled: “Challenges and Opportunities for ME/CFS research in Europe”. Speakers included researcher Eliana Lacerda and representative of the EU Commission Catherine Berens. The webinar has been made available on YouTube in English and Spanish. Video here Thread here Cochrane Hilda Bastian, Lead of the Independent Advisory Group (IAG) of the Cochrane review on exercise therapy for ME/CFS, has published a new monthly update. A ninth member of the IAG has been announced: Miranda Cumpston, senior methods editor for Cochrane Public Health. The IAG will be deciding on a tenth member in the coming weeks. Meanwhile, the author team is working on a first draft of the protocol for the review. Article here Thread here Law and Health blog "Possible responses to the new NICE guideline for “ME/CFS” and "FOLLOW-UP to previous post on responses to the draft NICE guideline for “ME/CFS” + the need for a communications strategy rethink". In two linked articles, Valerie Eliot Smith discusses legal and media issues in preparation for the publication of the guideline. Articles here and here Thread posts here and here Hungary Mike Harley is running a marathon in each of the member states of the European Union to raise awareness of ME/CFS and collect funds for the charity Invest In ME Research. Recently, Mike interviewed ME/CFS patient Ágnes Szarvas about her struggle with the illness in Hungary. Article here Thread here .................. Surveys Europe The pan-European survey organized by the European ME Alliance (EMEA) about the onset and progress of ME/CFS has received more than 8500 responses thus far. The authors hope that many more European patients will participate. Article here Thread here University of Iowa "Comparing the Impact of Pain and Fatigue on Function in Post-COVID-19 Syndrome to Fibromyalgia and Chronic Fatigue Syndrome" Online survey. Survey here Thread here UK Priority Setting Partnership First survey seeking suggestions of priority areas for ME/CFS research closes this week, 5pm Monday 5th July. [edit: Extended to 7th July] Survey here Thread here ..................... Biomedical research Biomolecules "Bioenergetic and Proteomic Profiling of Immune Cells in ME/CFS Patients: An Exploratory Study" by Fernandes-Guerra et al. 6 patients and 6 matched controls, symptoms and mitocondrial functions in blood cells (PBMC's) and plasma were tested. Decreased mitochondrial coupling efficiency and proteome alterations indicated 'PBMCs from ME/CFS patients have a decreased ability to fulfill their cellular energy demands.' Paper here Thread here NeuroRegulation "Central Autonomic Network Disturbance in ME/CFS: A Pilot Study" by Zinn, Zinn and Jason. 6 patients, 7 healthy controls. Exact low-resolution electromagnetic tomography (eLORETA) was used to investigate 'density in cortical structures' using EEG, before, after, and 24 hours after, a submaximal isometric handgrip exercise. They found some differences that were most pronounced after 24 hours. The authors suggest this could be useful for 'functional diagnosis and evaluation of treatment outcomes'. Paper here Thread here Journal of Clinical Medicine "Changes in the allostatic response to whole-body cryotherapy (WBC) and static-stretching exercises (SS) in CFS Patients vs. healthy individuals" by Kujawski et al. 32 patients (Fukuda criteria) and 18 healthy controls were tested before after 10 sessions of WBC and SS. 'Before and after intervention, in the CFS group increased fatigue was related to baroreceptor function, and baroreceptor function was in turn related to aortic stiffness, but no such relationships were observed in the control group.' Paper here Thread here Life Sciences "Subcortical brain segment volumes in Gulf War Illness and ME/CFS" by Addiego et al. Structural MRI brain scans from 34 sedentary controls, 38 CFS, and 90 GWI patients were analysed. 'CFS females had smaller left putamen, right caudate and left cerebellum white matter than control women. CFS males had larger left hippocampus than GWI males.' The authors conclude 'Previous volumetric studies may need to be reevaluated to account for gender differences.' Paper here Thread here Journal of Clinical Investigation "Passive transfer of fibromyalgia symptoms from patients to mice" by Goebel et al. Mice injected with IgG from small samples of FM patients had increased sensitivity to pressure and cold, were less active and had reduced paw grip strength. The IgG was found to be localised in dorsal root ganglia, not in spinal cord or brain. IgG-depleted serum from FMS patients or IgG from healthy control subjects had no effect. Guardian "Fibromyalgia may be a condition of the immune system not the brain" describes the study findings. Professor Anderson, one of the researchers, 'said he also hoped to conduct similar experiments using antibodies harvested from people with ME/CFS and long Covid.' Paper here Guardian article here Thread here ................... Other research news Trial by Error by David Tuller "Journal Corrects "Highlights" of GETSET Paper; A Letter about Prof White's GET Safety Paper" Thanks to pressure from Tuller, the null result in a GETSET paper on long term effects are now included in the highlights of the paper. But the original abstract conclusion remains the same and is still misleading. Tuller has sent the editor-in-chief of the journal a letter saying it's troubling they are giving a platform for personal views presented as facts. Article here Thread here Psychological Medicine The journal Psychological Medicine has published a corrigendum in an article on functional neurological disorders. The paper incorrectly stated that “the incremental cost incurred by somatising patients is £3 billion per year, accounting for 10% of total NHS expenditure” while the figure is “10% of NHS expenditure in the working-age English population in 2008–2009.” DrPH David Tuller pointed out this mistake to the editors of Psychological Medicine in April 2021. Corrigendum here Thread here ........... Covid-19 and ME AMA Journal of Ethics "The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19" A great piece by Dorothy Wall who has suffered from ME since 1978. She reflects on the difficult meetings between doctors and ME patients as well as with other patient groups with invisible illnesses. She also provides important background information for a better understanding of ME. "Had government institutions, researchers, and clinicians taken patients’ subjective reports of illness seriously over the last 35 years, I and others with ME/CFS could today enter a medical office and find physicians who could more effectively guide our care." Article here Thread here The New England Journal of Medicine "Confronting Our Next National Health Disaster - Long-Haul Covid” by Steven Phillips, M.D., M.P.H., and Michelle A. Williams, Sc.D. Says we need to look at conditions as for instance ME to comprehend why long Covid is a “looming catastrophe” and has five suggestions for how to address the surge."Unless we proactively develop a health care framework and strategy based on unified, patient-centric, supportive principles, we will leave millions of patients in the turbulent breach.” Article here Thread here Guardian 'I felt betrayed': how Covid research could help patients living with chronic fatigue syndrome Excellent article in a series titled "The pain that can't bee seen". Quotes from Anthony Komaroff, David Tuller and Nina Muirhead. Article here Thread here Guardian Why women are more likely to suffer from long Covid Article by gynaecologist and chair of the Pelvic Pain Foundation of Australia Susan Evans and professor Mark Hutchinson on immune-related hypotheses for higher prevalence of Long Covid in women. Article here Thread here ...................... S4ME social media: Facebook, Twitter and You Tube
