This thread has a Science for ME News in Brief post for each week in October 2020 written by @Trish, @Kalliope and others. Scroll down to see this week's news.
Week beginning 28th September 2020 News and articles UK ME Association "Forward-ME: NICE issue clarification about new Chronic Pain Guideline & expand on statement for GET in Post-Covid-19" by Dr Charles Shepherd. A letter from Dr Paul Chrisp (NICE Director of the Centre for Guidelines) provides confirmation that the treatment recommendations in the draft Chronic Pain Guideline do not apply to people with a diagnosis of ME/CFS. The letter also clarifies that 'the recommendations in the ME/CFS guideline should not be applied to people with post-COVID-19 fatigue as they do not fall within the scope'. Article with copy of letter here Thread here Physios for ME "Back to school – considerations for young people with ME" The article gives helpful recommendations on pacing, educating others, use of technology and links to further information. Article here Thread here UK - DecodeME An email has been sent out by the communications team about future updates from the DecodeME team. It contains a link to a short (5 question) Surveymonkey survey. If you are signed up and haven't received the email, try signing up again. Website here Thread here The Polyphony "Shame, Stigma and "Unexplained" Symptoms" PhD student Katherine Cheston writes about her doctoral research concerning the isolation, disbelief and stigma patients with poorly understood medical conditions (including chronic fatigue syndrome) experience. Article here Thread here Nursing Management Continuous Education Module: Chronic fatigue syndrome A short article about CFS for nurses, with a 20 question multiple choice quiz. Article here Quiz here Thread here Sweden Opinion piece in the newspaper Aftonbladet by social worker Nina Otelius on the lack of financial support for ME patients in Sweden. "I am often asked how I manage to work with these severely ill patients. I always answer the same thing: It's not the patients who are the burden. What weighs on me is the unequal, exclusive and non-functioning Swedish insurance and healthcare system" Article here Thread here Denmark Fanø municipality offers a family a sincere apology for the way they've been treated and for not providing any help with their daughter who suffers from severe ME, writes the local newspaper Ugeavisen. Article here Thread here ...................... Trial by Error by David Tuller *** New fundraising *** Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff This October fundraising is a continuation of April's fundraising which was shortened due to the pandemic. The goal is to raise $60.000 in order to cover David Tuller's academic position at Berkeley's Center for Global Public Health from January through June 2021. Fundraising here Thread here The CDC's Stakeholder Meeting Tuller comments on the recent ME/CFS Stakeholder Meeting by CDC. "An ongoing failing of the CDC has been its refusal to frankly acknowledge its error in advocating for the cognitive behavior therapy/grade exercise therapy (CBT/GET) paradigm based on the discredited PACE trial and related research". Article here Thread here The Royal Society of Medicine Webinar on Long-Covid Tuller critically unpacks a suggestion of a CBT/GET approach to Long-Covid, which was presented at this recently held seminar. Article here Thread here .................... Research Journal of Education, Health and Sport "Chronic Fatigue Syndrome in children population – current knowledge summary" by Prylińska et al. In this overview article of ME/CFS in children, the authors from Copernicus University, Poland write that “confirmed pathophysiological disorders indicate that it is a multiorgan disease of somatic origin, and not, as initially thought, psychological.” They also state that “To date, no treatment or cure for ME/CFS has been developed." Article here Thread here Preprints.org “Recommendations for Epidemiological Research in ME/CFS from the EUROMENE Epidemiology Working Group” by Mudie et al. In this publication the EUROMENE working group on epidemiology has set out recommendations on how to screen and diagnose patients with appropriate questionnaires and clinical assessments. This is a preprint that hasn’t been peer reviewed and published in a scientific journal yet. Preprint here Thread here ................... Advocacy UK All Party Parliamentary Group on ME The next meeting will be via Zoom at 4.30-5.30 pm Wednesday 7th October. Speakers on Department of Work and Pensions benefits and ME. Invite your MP to attend. ME Association article here Thread here ..................... Covid-19 and ME UK ME Association "POST COVID-19 FATIGUE, POST/LONG COVID-19 SYNDROMES AND POST-COVID ME/CFS" by Dr Charles Shepherd. An update on their earlier leaflet. 'Five months on and we are now in a situation where some people are being given a diagnosis, or a possible diagnosis, of post-COVID-19 ME/CFS'. 'This new and comprehensive leaflet should be of help to people in relation to the management of post-COVID fatigue and some aspects of post-COVID syndromes where they overlap with ME/CFS symptomatology.' 24 page pdf. Leaflet here MEA article here Thread here Other items of interest Daily Mail "The doctors still crippled by Covid-19 after they caught it" Article here Thread here BMJ "Long covid and self-help pacing groups - getting by with a little help from our friends" by Paul Garner Article here Thread here The Telegraph "I had to leave the nursing job I love because of long-Covid" Article here Thread here BBC Radio "Long Covid" presented by Adam Rutherford Programme here Thread here Daily Nurse COVID "Long-Haulers" and Post-Viral Syndrome: "We Have to Believe Our Patients" Article here Thread here ...................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 5th October 2020 News, articles videos UK - Forward-ME Position Statement: Spinal Surgery and ME. Signatories include representatives of 10 UK ME organisations, Carol Monaghan MP, Physios for ME, and several doctors with key roles in ME in the UK. 'Forward-ME is aware that major surgery to address possible spinal pathologies in patients with ME has become a topic of interest for some in the patient community. [...]There is no evidence to support spinal surgery to treat symptoms of ME, or even ME itself. The only evidence is anecdotal. It comes from a small number of patients, some of whom had this surgery to treat one or more of several different diagnoses and reported relief from ME symptoms, while others report only temporary or no improvement. [...]' Statement here Thread here UK Forward-ME Minutes of the meeting on 9th September are now available. Topics included a talk from Sean O’Neill, Chief Reporter on the Times newspaper in which he emphasised the importance of personal engagement with journalists with an interest in a subject. He said his articles on DecodeME had stimulated interest. Other topics included FII diagnoses in children, medical education, the NICE guideline, DWP benefit assessments, research and the statement on spinal surgery. Minutes here Thread here #MEAction UK "Psychology Today fails in its duty of care to people with ME" The letter requests the retraction of a Psychology Today blog by journalist Temma Ehrenfeld 'How Does Chronic Fatigue Develop?'. The author says she has post Covid fatigue, and discusses ME, unhelpfully associates it with emotions, conflates it with chronic fatigue, and recommends exercise and psychological therapies. Blog here #MEAction letter here Thread here Physios for ME have added to their article "Back to school – considerations for young people with ME" with articles written by two young people, Alex and Sian. They share their experiences with attending school, the help available, their need to cut back or stop attending, and the advantages of online school, as well as commenting on life with ME. Sian's article here Alex's article here Thread here UK - Dr Sarah Myhill, a private GP who treats people in the UK with ME, had been investigated by the General Medical Council and has been exonerated. Thread with link here USA - ME/CFS Alert, Episode 119 Llewellyn King, host of ME/CFS Alert, interviews Tom Kindlon, a long-time ME/CFS advocate in Ireland and internationally. Kindlon, who lives in Dublin, played an important role in challenging the claims of the authors of the PACE trial. Video here Thread here ResearchGate Sten Helmfrid, Assoc. Prof., Ph.D. has published an article on ResearchGate in Swedish (with English abstract) about ME/CFS and why it's a distinct clinical entity. Article here Thread here European ME Coalition (EMEC) Thanks to Belgian member of parliament Pascal Arimont, EMEC was able to have a constructive meeting with representatives of the European Commission. EMEC has published its briefing document for the meeting, which details their main arguments of why there should be more funding for ME/CFS research in Europe. It also lists some concrete proposals of how this could be achieved. Article here Thread here ..................... Trial by Error by David Tuller More on the Royal Society of Medicine Webinar During the recent webinar "Long-COVID: Understanding the shadow if the virus" CBT/GET proponent professor Chew-Graham is all of a sudden now endorsing an approach of pacing for long Covid patients. Tuller raises some questions on the background of some of her previous work. Article here Thread here NICE Draft Guidance on ME/CFS Coming Next Month A recap while we wait for the draft version of the new ME/CFS guidance from NICE. "The committee ended up including both people who believe in proper science and CBT/GET ideologues, so predicting the outcome is a challenge". Article here Thread here ..................... Research news Australia The successful applicants for Australia’s $3m ME/CFS Targeted Call for Research (TCR) have been announced. The successful projects: Professor Sonya Marshall-Gradisnik: 'Ion channel dysfunction in the pathophysiology of ME/CFS: diagnostic biomarkers, therapeutic targets and treatments' Professor Ken Walder 'Using ‘omics to unravel the pathophysiology and repurpose drugs to treat ME/CFS' Professor Paul Gooley: 'Exploring the role of nitrogen metabolism, energy metabolism and mitochondrial function in the pathophysiological mechanisms of paediatric ME/CFS' Details here Thread here Emerge Australia "Lifelong Lockdown: Lessons Learned from the Health and Wellbeing Survey of Australians Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 2019." Emerge Australia has published the results of a national survey on the situation of ME/CFS patients in Australia, which was conducted from 25 March to 31 May 2019. Of the 1055 respondents, more than two-thirds live below the poverty line and only 6% of respondents had experienced a significant improvement in their symptoms over time. Survey here Thread here Germany - funding announcement The German The Federal Ministry of Education and Research (BMBF) has published a funding announcement to study unexplained pathological mechanisms of illnesses with a high disease burden. On Twitter BMBF explicitly referred to ME/CFS as a condition that could be studied under this call for proposals. Announcement here Thread here ..................... Research The Journal of Neurological and Neurosurgical Nursing "ME/CFS in Adolescents - Research Review" by Szrajda J. This Polish review of ME/CFS in adolescents highlights that ME/CFS is a multisystem disorder that leads to significant problems related to absenteeism and academic achievement compared to healthy adolescents. The author concludes that supportive therapy for comorbidities could be considered if needed but that there is currently no established effective treatment for ME/CFS. Article here Thread here Oxford Handbooks "Ethical Psychotherapeutic Management of Patients with Medically Unexplained Symptoms: The Risk of Misdiagnosis and Harm" by O’Leary and Geraghty. In this book chapter of the Oxford Handbook of Psychotherapy Ethics, Diane O’ Leary and Keith Geraghty show how ambiguity in the term “MUS” leads to routine conflation of diagnostic uncertainty with psychological diagnosis for unexplained symptoms in medical settings. Chapter here Thread here ................. Fundraising David Tuller University of California, Berkeley Crowdfunding 'Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff' by Dr David Tuller. The target is $60,000 which will cover David's academic salary and related costs from January to June 2021. Closing date for donations October 31st. Donate here Thread here Open Medicine Foundation (OMF) In honor of his 37th birthday, Whitney Dafoe is speaking out on social media to reiterate the critical importance of funding research into ME/CFS. So far, Whitney has raised over $24,000 for OMF-funded research as part of this birthday fundraising appeal. Details here Thread here .................... Coming Events UK - Action for ME Annual General Meeting 1.30pm to 3pm, Thursday 15 October. Online via Zoom. All are welcome. Staff and Trustees will give an overview of their services, campaigns and research, with input from some people they have supported. Details and sign up here Thread here ..................... Covid-19 and ME UK - NICE guideline for long Covid NICE and the Scottish Intercollegiate Guidelines Network (SIGN) announced this week that they will work with the Royal College of General Practitioners (RCGP) to develop a guideline on persistent effects of Covid-19 (Long Covid) on patients. It is expected that it will be published at the end of this year. Announcement here Thread here UK ME Association "ME Association Statement on the NICE clinical guideline for ME/CFS and the NICE guideline for Post/Long Covid-19" by Dr Charles Shepherd. This wide ranging update reminds readers that long covid is not necessarily the same as ME, but research into each may help the other, and Dr Shepherd is therefore involved in advising on both, including a recent briefing to the government health department. Dr Shepherd comments on illness management for ME and long Covid , and the draft guidelines for both coming soon. Article here Thread here UK - NHS England Long Covid clinics 'People suffering ‘long covid’ symptoms will be offered specialist help at clinics across England, the head of the NHS announced today. Respiratory consultants, physiotherapists, other specialists and GPs will all help assess, diagnose and treat thousands of sufferers who have reported symptoms ranging from breathlessness, chronic fatigue, “brain fog”, anxiety and stress.' NHS Article here Thread here British Medical Association (BMA) "Doctors with long COVID" Interview with doctors suffering from lingering symptoms following Covid-19. "All four doctors The Doctor spoke to for this article said they had learned from the experience of people with ME/CFS – particularly around the need to ‘pace’ rather than attempt graded exercise. It has also improved their understanding of this group of patients." Article here Thread here Nature "Long COVID: let patients help define long-lasting COVID symptoms" - Editorial "It is crucial that those with the condition are listened to in a way that, tragically, people with ME/CFS were not. The difficulties faced by people with ME/CFS and their representatives resulted, in part, from the fact that the patient voice was marginalized. This contributed to delays in the condition being recognized." Article here Thread here Other items of interest The Scotsman "Insight: The Scots who are living with nightmare of 'long Covid'" Article here Thread here ABC News "What is post-viral fatigue syndrome, the condition affecting some COVID-19 survivors?" Article here Thread here BBC "'Long Covid': Why are some people not recovering?" Article here Thread here The Mirror "Long Covid: Your questions about lingering devastation of coronavirus answered" Article here Thread here The Conversation "What is post-viral fatigue syndrome, the condition affecting some COVID-19 survivors?" Article here Thread here ....................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 12th October 2020 News, articles, videos Germany In Germany Federal Ministry of Education and Research (BMBF) and the Federal Ministry of Health (BMG) have announced new initiatives for ME/CFS. The BMG will commission the Institute for Quality and Efficiency in Health Care (IQWIG) to process and publish the current state of knowledge on ME/CFS in the form of a scientific report. The BMBF has announced a call for study proposals on unknown pathomechanisms of individual diseases with high disease burden but insufficient treatment options. The BMBF mentioned that this offers new opportunities to fund ME/CFS research. Announcement here Thread here Australia: ABC "Finding hope for those living with Chronic Fatigue Syndrome" Radio interview from Australia with Sue Collins from the Geelong ME/CFS Support Group, Dr. Heidi Nicholl from Emerge Australia and Prof. Ken Walder from Deakin University. An excellent overview of life with ME, problems with diagnosis, stigma and lack of treatment, and Prof Walder's planned research. Duration: 16 min. Interview here Thread here Scotland ME Association: "Scottish Government Issue Caution Notice for Graded Exercise Therapy in ME/CFS & Post/Long-Covid" 'Following a review [...] Health Improvement Scotland’s Health Technologies Group produced a rapid response in August reporting the conflicting reports of effectiveness for GET. This has now been released in tandem with an update to the webpage for the Scottish Good Practice Statement on ME/CFS.' '...the Scottish Government has advised that people should not be pressed into accepting unwanted Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) treatments.' Article with links to documents here Thread here UK Action for ME AGM is now available on YouTube. Reporting from the Chief Executive, Sonya Chowdhury and others, including plans for next year. Duration: 1hr 20min. Video here Thread here Sweden Talks from a recent ME seminar organised by the Swedish patient organisation RME are now available. English lectures from professors Ron Davis, Betsy Keller and Kristian Sommerfelt. Swedish lectures by Dr. Kent Nilsson and Jonas Bergquist. Videos here Thread here USA Recordings of two webinars hosted by the Whittemore Peterson Institute (WPI) are now available. Annette Whittemore and special guest Staci Stevens from the Workwell Foundation discuss practical tips for energy management. Video-1 here Video-2 here Thread here ME/CFS research review Michiel Tack and Evelien Van Den Brink made an overview of ongoing, registered, or planned clinical trials for ME/CFS to see what treatments are being tested. There’s not as much in the pipeline as ME/CFS needs but COVID-19 has the potential to rapidly improve the situation. Their overview has been published on Simon McGrath’s blog: ME/CFS research review. Article here Thread here New Zealand Dr Lynette Hodges, clinical exercise physiologist of Massey University, talks about her ongoing research on the effects of exercise ME/CFS including some not yet published. She uses cardiopulmonary exercise testing and tests of arterial function to reveal differences between people with ME/CFS and healthy controls. She comments about the PACE trial: 'no guideline should ever be based on this research'. Duration 1 hour 11min. Video here Thread here Open letter to NIH researchers Trish Davis (@Trish) has, with help from forum members, sent a personal open letter to Dr Stussman et al. detailing concerns about their paper 'Characterisation of Post-exertional Malaise in patients with ME/CFS'. Concerns included the conflation of daily fatiguablity with PEM, and the methods of collecting and analysing data that led to an incomplete list of core PEM symptoms. A brief reply has been received from Dr Stussman and Dr Walitt. Thread with letter and reply here ................. Trial by Error by David Tuller How Professor Lubet's Nightmare Began... Law professor and scholar at Northwestern University Steven Lubet about his frustrating journey to get a proper diagnosis. Article here Thread here Professor Chalders's PRINCE Has Arrived Tuller takes a critical look at the recent paper "Integrated GP care for patients with persistent physical symptoms: feasibility cluster randomized trial" by Prof. Chalder et al which they'd like to conduct a follow-up trial for, despite its poor outcome. Article here Thread here ................. Research Journal of Translational Medicine "Cytokine profiling of extracellular vesicles isolated from plasma in ME/CFS: a pilot study" by Giloteaux et al The team of Professor Maureen Hanson tested 35 ME/CFS patients and 35 matched controls. They found elevated levels of 30-130 nm EVs in plasma from ME/CFS patients and inter-cytokine correlations revealed unusual regulatory relationships among cytokines in the ME/CFS group that were different from the control group in both plasma and EVs. They conclude this is further evidence of immune dysregulation in ME/CFS. Paper here Thread here Healthcare "Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe ME/CFS patients" by Van Campen et al. 100 severe ME/CFS patients and 15 healthy controls. CBF was measured first while seated for at least one hour, followed by a CBF measurement in the supine position. Sitting provoked a clinically and statistically significant mean CBF decline of 24.5%, making it a useful test for orthostatic intolerance in these patients who may not be able to tolerate a tilt table test. Paper here Thread here Healthcare "Cardiac Dimensions and Function Are Not Altered among Females with the ME/CFS" by Iversen et al. 16 female ME/CFS patients and 10 healthy controls were tested with supine transthoracic echocardiography. No significant differences in echocardiographic variables characterizing cardiac dimensions and function were found between patients and controls. Paper here Thread here University of Liverpool In this doctoral thesis, Amelia Wright investigated the relationship between perfectionism on and either depression or anxiety in patients with ME/CFS. The second part of the thesis, Wright reports that metacognitive beliefs account for a significant proportion of the variance in both depression and anxiety when controlling for demographic and clinical variables including level of fatigue. Thesis here Thread here .................. Fundraising David Tuller University of California, Berkeley Crowdfunding has reached half it's target of $60,000. Closing date for donations October 31st. Donate here Thread here ................. Coming events UK Sheffield ME & Fibromyalgia Group 2:30pm Thursday 22nd October "Preventing Post-Exertional Malaise – Pacing and Energy Management in ME/CFS" An online talk by Staci Stevens and Dr Mark Van Ness of the Workwell Foundation. Register to watch on Zoom, or watch the livestream on Facebook. It will be put on YouTube afterwards. Registration here Thread here Webinar: "Scientific Research on ME/CFS in the Age of COVID-19" The New York State Department of Health is hosting a webinar on Monday, October 26, 2020, from 6:00 to 7:00 pm Eastern Time. The panel of presenters includes Maureen Hanson of the Cornell CRC (Collaborative Research Center), W. Ian Lipkin of the Columbia CRC, and Avi Nath from the NIH. Announcement here Thread here Webinar: "You + ME: A Registry for the Whole ME/CFS Community" The Solve ME/CFS group is holding a webinar on Wednesday, December 16, 2020 at 10 am PT/1 pm ET to discuss their You + ME Registry project. Announcement here Thread here Sweden The journal of the Swedish Medical Association organises a webinar on 26th November on fatigue syndrome and ME/CFS with among others senior doctor Per Julin and professor Jonas Bergquist as lecturers. More info here Thread here .................. Covid-19 and ME UK ME Association "News & Comment: The Long-Covid Crisis and £10 million on NHS Specialist Clinics for Post-Covid Sufferers" This article reproduces 3 letters and comments in the media from representatives of the MEA highlighting the need for better understanding of all post viral syndromes including ME/CFS. Article here Thread here UK NIHR review "Living with Covid19" A review from National Institute for Health Research (NIHR) on the evidence around Long Covid. Physios for ME and the ME Association are listed among the resources and post-viral fatigue syndrome is suggested as one of four different syndromes patients are suffering from. Some coverage of the review: BMJ here The Guardian here Review here Thread here Harvard Health Publishing The tragedy of the post-COVID "long haulers" Anthony Komaroff, MD draws parallels between post-COVID and ME/CFS. He worries the number of Americans suffering from ME/CFS will double in the next two years due to the pandemic. Article here Thread here USA - NIH (National Institutes of Health) The NIH COVID-19 Treatment Guidelines webpage has added a section called "Persistent Symptoms or Illnesses After Recovery from Acute COVID-19." Webpage here Thread here Time "Have We Been Thinking About Long-Haul Coronavirus All Wrong?" Good article on how the pandemic can move the ME field forward. Interviews with among others Jaime Seltzer (#MEAction), Dr. Anthony Komaroff, Dr. Ron Tompkins and Dr. Avindra Nath. Article here Thread here The Bioinformatics CRO Podcast Episode 2 with Chris Ponting. Topics include ME and potential parallels to Covid-19 “long-haulers”. He talks about the devasting effects of ME, the lack of research, and the need to listen to and work with patients. Duration 48 minutes. Podcast with transcript here Thread here Other items of interest CNN "Kids struggle with Covid-19 and its months of aftermath" by Ryan Prior Article here Thread here Politico "Health systems stumble on 'Long COVID' as crisis grows" Article here Thread here Medscape "Long-hauler COVID Clinics Are Open, Skepticism Lingers" Article here Thread here The Science Bit "Is the stampede of COVID-19 science encouraging substandard research?" by prof. Brian Hughes Article here Thread here Bateman Horne Center "*Long-Covid-19* Covid Longhaulers*" Video with drs. Bateman and Yellman. Duration: 1h Thread with video here The Globe and Mail "I have a chronic illness. I know what the COVID-19 long-haulers are going through" by Nadine Sander-Green Article here Thread here AMA "COVID-19 daily video update: Patient, physician share their experiences as COVID-19 long haulers" with Mady Hornig, MD, MA Video and transcript here Thread here Bloomberg "Covid-19 Hits the Old Hardest, But the Healthy Longest" Article here Thread here .................. S4ME social media: Facebook, Twitter and You Tube
Week beginning 19th October 2020 News, articles, videos Australia Emerge Australia has partnered with Open Medicine Foundation to launch the fifth OMF international research centre in Australia. It will be located in Melbourne, and Chris Armstrong will be returning to Australia to take on the role of Director. OMF article here Emerge article here Thread here Scotland A collaboration of M.E. charities, led by Action for M.E., has been granted funding from the Scottish Government to support M.E. education for doctors in Scotland. It will be used to promote and disseminate the CPD learning module developed by Dr Nina Muirhead. Action for ME article here Thread here NICE guideline The draft guideline will be available on 10th November. Individuals and stakeholder organisations will be able to submit comments. #ME Action UK article :"6 Ways To Have Your Say In The NICE ME/CFS Guideline Consultation" #MEAction UK article here Thread here UK BACME "Position paper on the management of ME/CFS" published by BACME, the organisation run by professionals who treat people with ME/CFS. A single page document that supports 'person centred' rehabilitation using 'grading activity strategies' and CBT. 'We support the continuing development of specialist multi-disciplinary ME/CFS services and specialist clinicians to guide, support and advise patients towards optimal health, wellbeing, and recovery.' Action for ME have written a critical review, citing their survey data to refute suggestions of efficacy of CBT and rehabilitation, and questioning the lack of mention of pacing. The ME Association shares these concerns, questions the publication only weeks before the new draft NICE guideline, and invites feedback. Statement here AfME review here MEA article here Thread here UK Sheffield ME & Fibromyalgia Group "Preventing Post-Exertional Malaise – Pacing and Energy Management in ME/CFS" An online talk by Staci Stevens and Dr Mark Van Ness of the Workwell Foundation is available on video. Duration 1hour 8min. Thread with link here ME/CFS Alert Episode 120: "Interview with Leonard A. Jason of Depaul University Lewellyn King interviews Leonard A. Jason, professor of psychology and director of the Center for Community Research at DePaul University about his own experiences as a sufferer of ME/CFS and his research into the disease. Duration: 25 minutes Thread with video here Denmark The Danish newspaper Politiken has an article about a family with a daughter who suffers from severe ME. After years of abuse from the health care system, they have received an apology from the Municipality. Article here (Paywalled) Thread here ............... Trial by Error by David Tuller Some Thoughts on Long-Covid, ME/CFS and MUS The article includes the overlaps between post-Covid and ME/CFS and the biopsychosocial approach to MUS. "Both MUS and ME/CFS are likely to become prominent points of discussion and contention as the number of long-Covid cases rises." Article here Thread here Professor Chew-Graham's Apparent Shift in Position on GET/CBT Tuller gives a recap of Prof. Chew-Graham's strong involvement with the CBT/GET paradigm. She recently gave a talk supporting pacing above GET for "long-haulers", which makes Tuller raise a few questions to clarify her current position. Article here Thread here ............... Research Handbook of Research Methods in Health Psychology "The Case of Chronic Fatigue Syndrome-Myalgic Encephalomyelitis" by Jason et al. In this book chapter on ME/CFS Leonard Jason and colleagues conclude that "the patient community continues to remain divided regarding the most basic issues, such as what to call their illness, and this division complicates the formation of collective efforts of activism that are need to accomplish many of the necessary goals of this patient movement." Book chapter here Thread here Healthcare "The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" by Boulazreg & Rokach. In this study, two Canadian researchers investigate how loneliness impacts ME/CFS. The authors conclude that It is a “healthcare imperative that we take the necessary steps to study and demystify the illness’ alienating and isolating aspects so that those suffering with ME/CFS can feel empowered and compassion from the medical community when dealing with the disorder.” Article here Thread here Retraction Watch "BMJ journal retracts, replaces study on chronic fatigue in children" BMJ Pediatrics Open has retracted a study on CBT and music therapy for adolescents with chronic fatigue following Epstein-Barr virus infection. The study published by the Norwegian research of Vegard Bruun Wyller had received criticism from several ME/CFS patients and advocates, including David Tuller. The journal, however, allowed the authors to republish the study, a decision that has been criticized by several S4ME forum members. Article here Thread here Clinical Child Psychology and Psychiatry “Chronic fatigue syndrome/myalgic encephalomyelitis in children aged 5 to 11 years: A qualitative study” by Bridgen et al. In this study, the research team of Esther Crawley from the University of Bristol conducted interviews with younger children (5–11 years) using techniques such as body mapping, emoji cards and card sorting to describe their experiences of ME/CFS Article here Thread here ................ Fundraising David Tuller University of California, Berkeley "Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff" Final week for donations which close 31st October. This October fundraising is a continuation of April's fundraising which was shortened due to the pandemic. The goal is to raise $60,000 in order to cover David Tuller's academic position at Berkeley's Center for Global Public Health from January through June 2021. With 6 days to go the fund has reached $40,000. Fundraising here Thread here ................ Action UK survey Professor Derek Pheby asks people in the UK with ME/CFS, diagnosed by a doctor, to fill in an online survey of symptoms and treatments for comparison with results in Italy and Latvia. The survey takes about 10 minutes to complete. Survey here Thread here UK Petition "Stop gaslighting chronic illness patients" Addressed to Simon Stevens, CEO of the NHS, the petition lists demands including that MUS should be abandoned as a theoretical construct/diagnosis by the NHS; up to date training for GP's; and more funding for biomedical research. ME/CFS is included in the list of conditions. Petition here Thread here Australian ME/CFS Biobank and Registry Solve ME is partnering with Emerge Australia to create a registry called You + ME Australia. Pre-register now to be added to the mailing list. Pre-register here Thread here ................. Coming Events Webinar: "A Conversation with Dr. Fauci" Survivor Corps is hosting a webinar on COVID-19 with Dr. Anthony Fauci on Friday, October 30 at 2:00 PM EST. Topics include Long Term COVID, Post-Covid Care and the future of treatments for survivors who have not recovered. Details here Thread here Community Q&A with PolyBio Research Foundation On Monday, October 26, from 10:00 - 11:30 am PDT (1:00 pm EDT, 5:00 pm GMT) a community Q&A session will be held with Polybio founders neuroscientist Mike Van Elzakker, microbiologist Amy Proal, and CEO Kris Forbes. Details here Thread here ................. Covid-19 and ME New York Times "At 12, She's a Covid 'Long Hauler' Article by David Tuller on long-haulers and children. Includes interview with Dr. Peter Rowe who says that some of the symptoms and the severe impairment many long-haulers suffer from are characteristic of ME/CFS. Article here Thread here U.S.News "Help Is Out There for COVID 'Long Haulers' Commentary by Ana M. Palacio, M.D., MPH and Nancy Klimas, M.D. "Clinicians would draw on knowledge surrounding chronic fatigue syndrome in treating patients suffering from the lingering effects of COVID-19" Article here Thread here The Guardian "'I felt less alone': how Australians with disabilities are fearing life after the pandemic" ME sufferers tell how increased online activities during the pandemic has made the world more accessible. They now fear this will vanish again once the pandemic is over. Article here Thread here #MEAction "Tell those with Long COVID to: Stop. Rest. Pace." #MEAction has launched a new global information campaign "to help these people with long COVID who are showing symptoms of ME get the care they need." Details here Thread here Other items of interest World Economic Forum "What it's like to be a COVID-19 'long-hauler' with symptoms that last for months" Article here Thread here WTTW "COVID-19 'Long-Haulers': Symptoms Persist for Some Patients" Article here Thread here Cosmopolitan "Living with Long COVID: What happens when coronavirus just won't go away" Article here Thread here UK Lecture by Professor Sir Stephen Holgate: "Understanding and living with Covid-19. Past, present and future?" Duration 44 minutes. Video here Thread here ABC News "Covid-effects can be persistent and serious say doctors suffering 'long COVID'" Article here Thread here Jennie Jacques "The Haunting Of Long Covid" Article here Thread here The Washington Post "With long-haul covid-19, important advice for patients, doctors and researchers" by Julie Rehmeyer, Jennifer Brea and Brian Vastag Article here Thread here ................... S4ME social media: Facebook, Twitter and You Tube
Week beginning 26th October 2020 News, articles, videos Australia - Mason Foundation research grants Grants for projects that focus on ME/CFS will be awarded to a maximum of $90,000 per annum, for up to 3 years. Closing date for applications 16th November 2020. Details here Thread here Webinar: Scientific Research on ME/CFS in the Age of COVID-19 On October 26th, Maureen Hanson of the Cornell University, Ian Lipkin of Columbia University and Avi Nath from the NIH presented as part of a panel hosted by the New York State Department of Health (NYSDOH). They talked about current research on ME/CFS in the age of COVID-19. Some S4ME members have posted short summaries of the talks. Thread here Denmark Psychologist Peter la Cour criticises the Danish Health Authority in a local newspaper for not following up on the Danish Parliament's resolution to remove ME from the list over functional disorders. Article here Thread here Sweden The newspaper Folkbladet writes that politicians are promising a specialist clinic for ME patients in the region Västerbotten. But patients are sceptical, as no formal decisions on this has taken place yet. Article here (paywalled) Thread here Occupy ME: The 2019 NIH Funding Fact Check New blog post from Jennie Spotila doing a fact check on how much the NIH has spent on ME/CFS research in 2019. Blog here Thread here Center for Solutions for ME/CFS To foster communication and engagement with ME/CFS stakeholders, the ME/CFS Collaborative Research Centers (CRC) have launched a new Community Advisory Committee (CAC). This committee will be managed by the Center for Solutions for ME/CFS at Columbia University. Details here Thread here #MEAction A four page document called "Pacing and Management Guide for ME/CFS" has been released by the #MEAction group. Link to PDF here Thread here UK - Physios for ME have responded briefly to the BACME position paper reported last week. They suggest the paper should have included evidence to support its statements about causes and clinically effective treatment. Article here Thread here ................. Trial by Error by David Tuller NICE's Upcoming Draft Guidance on ME/CFS David Tuller's guess on the outcome of the upcoming draft of the revised guidance for ME/CFS from National Institute for Health and Care Excellence (NICE). He believes GET will be discarded and that CBT will be recommended as supportive care. Article here Thread here The British Association for CFS/ME Switches Gears Tuller comments on BACME's recent "Position Paper on the management of ME/CFS". "Judging from the BACME position paper, these investigators now seem to fear that their paradigm and its hypothetical underpinnings, which presume the absence of organic dysfunction, are on life support." Article here Thread here BMJ Retracts Music Therapy-CBT Study, But... Tuller says BMJ's decision to retract and replace a study on CBT and music therapy as treatment approach for chronic fatigue, is not satisfactory. He also reposts a recent email exchange between himself and BMJ's Research Integrity Co-ordinator. Article here Thread here ................. Biomedical Research Nature - Scientific Reports "Substrate utilisation of cultured skeletal muscle cells in patients with CFS" by Tomas et al. Cultured skeletal muscle cells from 9 CFS patients and 11 healthy controls were tested. The CFS muscle cells were unable to utilise glucose to the same extent as healthy control cells, but they oxidised galactose and fatty acids normally, indicating that the bioenergetic dysfunction lies upstream of the TCA cycle. The authors suggest similar dysfunction found previously in blood cells supports the hypothesis that CFS is a systemic disease, and that the retention of bioenergetic defects in cultured cells indicates that there is a genetic or epigenetic component to the disease. Paper here Thread here Biomolecules "Early Growth Response (EGR) Gene Upregulation in Epstein–Barr Virus (EBV)-Associated ME/CFS" by Kerr. 'EGR gene upregulation was found to be closely associated with that of EBI2 in ME/CFS'. The author explains the function of these genes and suggest this finding provides 'further evidence in support of ongoing EBV reactivation in a subset of ME/CFS.' Paper here Thread here PLOS One "Effect of disease duration in a randomized Phase III trial of rintatolimod, an immune modulator for ME/CFS" by Mitchell et al. Also called Ampligen, the Phase 3 trial results were analysed post hoc according to disease duration. The 155 with less than 2 years or longer than 8 years responded no better than placebo. In the 75 patients between 2 and 8 years, half improved their exercise duration by more than 25% and reported improved quality of life. Paper here Thread here Preprint "Re-analysis of genetic risks for Chronic Fatigue Syndrome from 23andMe data finds few remain" by Bedford et al. Data from 23andMe had been compared with a control database that was found to contain errors. A re-analysis found only 3 of 50 previously reportedly significant SNPs survived initial study criterion of at least twice as prevalent in patients. The authors conclude that 23andMe data can be useful but only 'if caution is taken with chips and SNPs.' Preprint here Thread here .................. Other Research Postural Tachycardia Syndrome - book Exercise Guidelines for Postural Tachycardia Syndrome – chapter by De Wandele et al. In this book chapter, Peter Rowe and colleagues write that “exercise needs to be carefully prescribed through careful clinically reasoning, gradation and monitoring, alongside other non-pharmacological and pharmacological treatments. In particular people with overlapping pathologies such as Hypermobility Spectrum Disorder, Ehlers Danlos Syndromes, fibromyalgia, chronic fatigue syndrome or overtraining scenarios need to be carefully managed to avoid exacerbation of symptoms and to enable steady progress.” Book chapter here Thread here Journal of Clinical Medicine "Prediction of Discontinuation of Structured Exercise Programme in Chronic Fatigue Syndrome Patients" by Kujawski et al. This Polish study reports on 69 ME/CFS patients who underwent a structured exercise programme (SEP). 35 patients discontinued, while 34 completed the SEP. The authors report that “The more sympathetic drive in the control of blood vessels, the longer the reaction time on simple visual stimuli and the lower the HRmax during physical exercise, then the lower the chance of SEP completion in ME/CFS.” Article here Thread here Journal of Clinical Medicine “Systematic Review of Primary Outcome Measurements for CFS/ME in Randomized Controlled Trials” by Kim et al. This review tried to determine the overall characteristics of the main outcome measurement applied in clinical trials for ME/CFS. Of 52 randomized controlled trials, (59.6%) used a single primary outcome. The 36-item Short-Form Health Survey (SF-36; 16 RCTs), Checklist Individual Strength (CIS; 14 RCTs), and Chalder Fatigue Questionnaire (CFQ; 11 RCTs) were most frequently used as the main outcomes. Among the 17 tools used in the 52 RCTs, only two were behavioural measurements (school attendance rate and the number of steps per day). Article here Thread here Fatigue: Biomedicine, Health & Behavior "The negative impact of the psychiatric model of chronic fatigue syndrome on doctors’ understanding and management of the illness" by K. Geraghty In this paper, Keith Geraghty from the University of Manchester argues that The psychiatric biopsychosocial model of ME/CFS “may negatively bias how physicians approach the illness, with doctors directed to view patients’ complaints as manifestations of psychological distress, rather than physical symptoms that require medical investigation or intervention.” Article here Thread here ................... Fundraising New Zealand Massey University has opened fundraising for Dr Lynette Hodges' research into ME, PEM and exercise. Thread with details here .................... Coming events NIH ME/CFS Advocacy Call An NIH call to discuss ME/CFS research updates will be held on November 5, 2020 from 11:00 am to noon EST. Guest speaker will be Allison Kanas from the Center for Solutions for ME/CFS at Columbia University. Participants will be invited to submit questions during the Q&A session. Details here Thread here Solve ME/CFS Advocacy Week Next year's ME/CFS Advocacy Week is planned for April 18-24, 2021. It will continue to be virtual with remote access to all events. The keystone event will be the Washington, D.C. Hill Day, a full day of meetings with members of Congress and their staff on April 20. A more detailed schedule will be announced soon. Announcement here Thread here ................... Covid-19 and ME News Wise - Nova Southeastern University Researchers Receive $4 Million From CDC for 'COVID Long Haulers' Study Interview with Director of NSU's Institute for Neuro-Immune Medicine Nancy Klimas who says: "With our long-standing research into ME/Chronic Fatigue Syndrome, we've been selected by the Centers for Disease Control and Prevention to begin researching these symptoms in COVID-19 patients". Article here Thread here Psychology Today - The Long-Hauler Tragedy - More frightening than Halloween Nightmares Leonard A. Jason, PhD and Vernita Perkins, PhD on the importance of increased research effort into long-Covid and ME. "As we engage in basic research, and treat and learn from these patients, we will ensure that they have not suffered in vain, and ultimately be able to transform our health care system to one that does a much better job of explaining many complex and challenging illnesses." Article here Thread here Other items of interest STAT News "I have all the symptoms of a Covid-19 long-hauler - but I'm hesitant to identify myself as one" Opinion piece here Thread here WSWS "COVID-19 "long-hauler" phenomenon presents in children and teens as schools reopen against expert advice" Article here Thread here elemental "The Latest Scientific Theories Around Covid-19 Brain Fog" Article here Thread here ................... S4ME social media: Facebook, Twitter and You Tube
