This thread has a Science for ME 'News in Brief' post for each week in January 2021 written by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.
Week beginning 4th January 2021 News and articles USA The James Lab at Stanford has been awarded an NIH grant of $196,398 for a research project called "Imaging Inflammation in the Whole Body and Brain of ME/CFS Patients." Details here Thread here UK Forward ME Minutes of the November meeting are now available. Topics include their NICE guideline submission, research updates, and discussions with the DWP about benefits assessments. Minutes here Thread here UK "ME Association writes to chief medical officer about vaccine priority for ME/CFS". Dr Shepherd makes the case that people with ME/CFS should be included in the UK Covid vaccine Group 6 as an 'underlying health condition'. Article with letter here Thread here Norway Excellent opinion piece by psychologist Grete Lilledalen about a planned and contested study on an alternative method as treatment for ME. Opinion piece here Thread here BBC "Disability and dating: 'Why do people think I'm my boyfriend's carer?'" Article on dating, disabilities and stigma. Several couples tell their stories, including Rob and Lorna. Lorna is diagnosed with ME. Article here Thread here ................ Research Journal of Translational Medicine "The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering post-exertional malaise: a systematic review and narrative synthesis" by Wormgoor & Rodenburg. The authors conclude that “there is no scientific evidence when it comes to effective physiotherapy for ME patients. Applying treatment that seems effective for CF or CFS patients may have adverse consequences for ME patients and should be avoided.” Article here Thread here Medicina “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members” by Brittain et al. This preliminary study measured the impact on the quality of life of family members of patients with ME/CFS. The results suggest the impact was significantly higher than for 25 other disease, (although the data of the control diseases was taken from another study). Article here Thread here ............... Studentship and volunteering UK - Action for ME has announced a 2021 call for UK PhD studentships in biomedical M.E. research, providing match-funding for up to three years totalling £45,000. Deadline 22nd February. Details here Thread here UK - Action for ME has several employment and volunteering opportunities, including people with ME in Scotland to train as advocates to help support people with ME. Details here Thread here ................ Coming events UK Cambridge GP Society Thursday 14 January Free online (Zoom) event about ME/CFS for healthcare professionals, students and patients. Speakers Dr Charles Shepherd, Dr Nina Muirhead and Caroline Kingdon RN. Sign up here Thread here ................ Covid-19 and ME Daily Mail "Long Covid patients are told to exercise despite crippling fatigue" Great article by Jerome Burne about Long Covid patients advised to exercise despite it making them feel worse. Includes interview with Andy Devereux-Cooke from Science For ME on GET versus pacing and on the removal of GET in the NICE draft guideline. Article here Thread here Physio-pedia "Long COVID" Good and informative resource for physiotherapists. Refers to ME/CFS, PEM and pacing in section on Management/Interventions. Article here Thread here Practical Pain Management "Connections to Post Viral Fatigue and Organ Damage" "Long COVID is not easily defined. Here's what clinicians need to know about patient subsets, potential organ damage. Plus, how post COVID fatigue resembles CFS and other symptoms seen in previous infectious disease outbreaks." Article here Thread here Other items of interest ClinicalTrials "AIM doses first 'long hauler' patient in trial of post-Covid-19 infection" Article here Thread here NextAvenue "For Many COVID-19 Survivors, Another Devastating Syndrome May Follow" Article here Thread here .................. S4ME social media: Facebook, Twitter and You Tube
Week beginning 11th January 2021 News, articles and videos ME/CFS Research Review by Simon McGrath "The expert testimony to NICE that took apart the case for CBT and graded exercise for ME/CFS". An article highlighting key points from Prof. Jonathan Edwards' expert testimony to the NICE guideline ME/CFS review committee. Article here Edwards' testimony here Thread here Video "Demystifying ME" UK: The Cambridge Medical Society Zoom event with speakers Dr Charles Shepherd, Dr Nina Muirhead, and nurse Caroline Kingdon is now available to watch. The excellent talks covered history, research, diagnosis and management of ME, the new NICE guideline, severe ME, and the likelihood of some people with long Covid developing ME. Duration 1 hour 36 minutes. Video here ME Association article here Thread here Trial by Error by David Tuller "New Study Reports First-Hand Accounts of 1955 Hospital Outbreak" About a recent paper with interviews with 27 people present at the Royal Free Hospital Outbreak. When comparing these interviews with arguments claiming the outbreak was due to hysteria, the theory gets dismissed. Article here Thread here .................. Biomedical research European Journal of Nuclear Medicine and Molecular Imaging "Reversible widespread brain 18F-FDG PET hypometabolism in chronic fatigue syndrome treated by hyperbaric oxygen therapy" by Guedj et al. A single case study of a patient diagnosed with CFS after Epstein-Barr infection who underwent multlple HBOT treatment sessions. Brain scans showed widespread hypometabolism which improved after treatment. Article here (paywalled) Thread here medRxiv preprint (not yet peer reviewed) "Salivary DNA loads for human herpes viruses 6 and 7 are correlated with disease phenotype in ME/CFS" by Lee, Lacerda, Nacul, et al. Saliva samples from 30 people with ME and 14 healthy controls showed some patients had herpes virus reactivation associated with symptom exacerbation, and others had more stable virus levels. The authors suggest a larger study could be useful. Paper here Thread here .............. Other research news USA "Finding Resources and Creating Opportunity: 2020 ME/CFS Federal Advocacy Report" Solve M.E. reports on advocacy achievements made in 2020, including congressional approval of an additional $1.15 billion to the National Institutes of Health (NIH) as a set-aside specifically for “research and clinical trials related to long-term studies of COVID–19.” Report here Thread here Frontiers in Medicine "Will COVID-19 Lead to ME/CFS?" by Komaroff & Bateman. Anthony Komaroff and Lucinda Bateman argue that SARS-CoV-2 might infect approximately 25 million Americans and that 10% of those could go on to develop ME/CFS. They write: “Over the course of one year, that would at least double the number of Americans suffering from ME/CFS. The annual incidence of the illness would equal or surpass the point prevalence—a remarkable event in the history of a chronic illness.” Article here Thread here .............. Coming Events Massachusetts ME/CFS & FM Association: Research Club Support Group Amy Proal, PhD, will share her thoughts on how recent research may shed light on ME/CFS. Sunday, January 24 at 5:00 pm Eastern Time. Register here Thread here Solve M.E.: Legislative Cafe Chat Emily Taylor, Director of Advocacy and Community Relations, will host a new Legislative Cafe Chat on Thursday, January 21 at 10:00 am Pacific Time/1:00 pm Eastern Time. Anouncement here Thread here USA Zoom event Friday February 12th. Conversation with the author of the book 'The Puzzle Solver', Tracie White with Ron Davis and Janet Dafoe, facilitated by Rivka Solomon. Details here Thread here ME Awareness - May 2021 Covid safe events being planned for ME Awareness day, week or month in May include the UK ME Association's 'go blue for ME'. MEA article here Thread here ............... Covid-19 and ME UK - Physios for ME "REGAIN trial for Long Covid" Physios for ME met with the team running the long Covid clinical trial 'REGAIN' designed to test an online exercise based program for people suffering ongoing symptoms following hospitalisation for Covid-19. They expressed their concern that there is no mention in the protocol of staff training on, and screening of patients for post viral fatigue symptoms, and the risks to those with PEM from exercise programs. They have also written to the funder, NIHR with their concerns. Article here Thread here Medscape "Long-COVID Cases Rise as Stigma of Chronic Fatigue Taunts" Thorough article of the history of clinical recognition of ME/CFS with quotes from, among others, Avindra Nath, Mady Hornig, Leonard Jason and Alain Moreau. Article here Thread here UK Parliamentary Debate on Long Covid led by MP Layla Moran, included a speech from Carol Monaghan drawing parallels with ME. Transcript here Action for ME article here Thread here Other items of interest Chicago Medicine "COVID-19 Long-Haulers" Article here (p. 21-25) Thread here Otago Daily Times "Post-viral illness thrust centre stage" Article here Thread here The Sun - "Our kids were left unable to eat or walk by Long Covid and treatment was 'torture' - but docs don't know how to help" Includes quotes from Nigel Speight with a plea for support and protection for children with long covid. Article here Thread here ............... S4ME social media: Facebook, Twitter and You Tube
Week beginning 18th January 2021 News, articles and videos Norway The Norwegian ME Association has published a report on disease course in ME and positive/negative influences. It's based on a survey from 2019 with 5 822 respondents. Among findings was that the most typical courses were large fluctuations (29%) or fluctuations followed by gradual deterioration (25%). Pacing was the best approach according to the respondents. Report here (in Norwegian) Thread here Norway Good commentary in the newspaper Dagbladet from playwright author Camara Lundestad Joof about the debate on a planned study of the alternative method Lightning Process as ME treatment. Camara's sister suffers from ME and deteriorated after having tried the method. Commentary here Thread here USA Video recording from the Solve M.E.: Legislative Cafe Chat on Thursday, January 21, is now available. Video here Thread here UK - Physios for ME report on a recent online presentation to over 400 physiotherapy students, now available on You Tube. They also report on a further delay to their ME research project because of Covid, and their upcoming poster presentations at the World Physiotherapy Congress in April. Articles here and here Video here (1h 30m) Thread here DePaul University "NIH-funded study examines mono, chronic fatigue syndrome in college students" Press release about a recent large longitudinal study from Leonard A. Jason et al examining risk factors for longer illness in college students post mononucleosis. Press release here Thread here ............ Biomedical research Journal of the Neurological Sciences "Modulatory effects of cognitive exertion on regional functional connectivity of the salience network in women with ME/CFS: A pilot study" by Manca et al. 6 women with, and 10 without ME/CFS, underwent clinical and MRI assessment before and after cognitive exertion. The abstract concludes: 'Cognitive exertion can induce worsening of ME/CFS-related symptoms. These changes were here associated with strengthening of FC of the right insula with areas involved in reward processing and cognitive control.' Paper here Thread here ............ Other research Clinical Medicine “Medically unexplained symptoms: assessment and management” by Husain & Chalder In this paper on medically unexplained symptoms, the authors argue that cognitive behavioural therapy (CBT) “is the treatment with the best evidence base for persistent physical symptoms, both for general symptoms and more specific syndromes.” Article here Thread here Clinical Medicine “The challenges of chronic pain and fatigue” by Eccles & Davis. In this paper, the authors explore possible pathological associations for patients with pain or fatigue, including variant connective tissue (joint hypermobility), small fibre neuropathy, mast cell activation, dysregulated inflammatory and interoceptive processes. Article here Thread here HealthWatch UK “It is not only drugs and devices that can harm” by C. Struthers. In Newsletter 114 of HealthWatch UK, Caroline Struthers argues that “any commitment to listen to patients and protect them from harm must extend to behavioural and psychological treatments. The merit and safety of these interventions is often backed up by poor science which escapes the greater scrutiny given to research on drugs and medical devices.” Struthers refers to the PACE trial as an example of poor research. Article here Thread here Healthcare "Homebound versus Bedridden Status among Those with ME/CFS" by Conroy et al. This research team including Leonard Jason from dePaul University Chicago looked at a large international sample of 2138 ME/CFS patients to see which factors predict whether patients are house- or bedbound. The findings showed a significant association between being house- or bedbound and the post-exertional malaise (PEM) symptom domain. Article here Thread here Research participation Online study The Cardiff University study led by Dr Nina Muirhead "Measuring the Impact of ME/CFS on the Patient and Family using the EQ5D and FROM-16 questionnaire" is open to participants until 31st March, 2021. They are aiming to double their initial target of 500 participants. Survey here Thread here ............. Coming events IACFS/ME Virtual Conference 19th - 21st August 2021 The International Association for CFS/ME will hold a conference again this year after the success of last year's online conference. 'The conference will focus on the biomedical, public health, and behavioral aspects of ME/CFS and associated comorbidities. A portion of the meeting will also be devoted to COVID-19 and its relevance to ME/CFS research and clinical care.' Details here Thread here .............. Covid-19 and ME UK The Guardian "We're about to see a wave of long Covid. When will ministers take it seriously?" by George Monbiot. 'The NHS must learn from its mistakes with other post-viral conditions such as ME/CFS – more research is vital'. An excellent article including history, mistreatment, what ME is really like, NICE, Decode ME, and the risks to patients of GET being prescribed now for long Covid. Article here Thread here The New York Times Magazine "What If You Never Get Better From Covid-19". A thorough feature article on emerging biomedical research into Long Covid and on the history of ME/CFS. Several ME researchers and experts quoted, including Anthony Komaroff, Avindra Nath, Maureen Hanson, Anne Louise Oaklander, Nancy Klimas, Peter Rowe, Jarred Younger, Carmen Scheibenbogen, Amy Proal and Susan Levine. Article here Thread here BBC "Long Covid and young people" Radio interview with mother and daughter suffering from Long Covid as well as with Dr. Nigel Speight who draws parallels to ME and advice upon pacing. Duration: 13 min. Interview here Thread here ............... S4ME social media: Facebook, Twitter and You Tube
Week beginning 25th January 2021 News Sweden A new version of a clinical ME guideline has been published from the region Skåne and also as national guideline with some minor improvements. Guideline here Thread here US News "Why Does 'Mono' Sometimes Turn Into Chronic Fatigue Syndrome?" Article about a recent longitudinal study from Professor Leonard Jason et al on risk factors in college students for developing ME post mononucleosis. Interviews with professor Jason and Dr. Lily Chu. Article here Thread here USA Jamison Hill discusses his new memoir, 'When Force Meets Fate: A Mission to Solve an Invisible Illness', on his blog. Blog here Thread here Canada The Winter 2021 newsletter from the Nation ME/FM Action Network is now available. It includes discussion of the COVID-19 vaccine and a look back at the Royal Free Hospital outbreak in 1955. Newsletter here Thread here Sweden The newspaper Aftonbladet writes that the Swedish Social Insurance Agency is stopping ME sufferer Jessica's sick leave despite her being bed bound for 22 hours a day. Article here Thread here ............... Trial by Error by David Tuller "Game-Changing Articles in the Guardian and The New York Times" About what the two excellent articles on January 21st in the Guardian by George Monbiot and in the New York Times by Moises Velasquez-Manoff on Long Covid and ME represent as signs of a change in media coverage. Also on some of The Guardian's previous articles on ME and David Tuller for comparison. Article here Thread here A severe ME patient sought help with nutrition at the Hennepin Healthcare in Minnesota, USA. He is now under threat of involuntary psychiatric commitment. Dr. David Tuller and Prof. Steven Lubet have both written to the institution asking for a comment, what their procedures are and what their expertise on ME is. "My Exchange with Minnesota Medical Center Holding ME/CFS Patient" Letter here Thread here "Professor Lubet's Inquiry to medical Center Holding ME/CFS Patient" Letter here Thread here ............... Research news USA - Trans-NIH ME/CFS Working Group "Research tools for ME/CFS-related data and biospecimens now available" 'Two new research tools developed by RTI International, the Data Management and Coordinating Center for the NIH-funded ME/CFS Collaborative Research Centers (CRCs) Network, are now available to help advance ME/CFS research by allowing researchers to access and share data and biospecimens.' There is an online platform for sharing data from multi-omic studies, and a search tool for accessing biospecimens. Article here Thread here ME Research UK announce funding for "The effect of activated HERVs and the associated immune response in severe ME/CFS" led by Prof. Elisa Oltra. Prof. Oltra plans to identify HERVs (human endogenous retroviruses) that are overexpressed in a women with severe ME/CFS compared with a matched group of women with fibromyalgia and healthy controls. "The team will also look at the effects of activation of these ME-associated HERVs on nerve and muscle cells in laboratory conditions, to understand their potential impact on the symptoms of the illness." Article here Thread here UK DecodeME article: "Why we need a study like DecodeME – scientific paper published" summarises the paper by the research team: 'Genetic risk factors of ME/CFS: a critical review' published last September. Article here Thread here .................. Biomedical research and hypotheses Proteomes "In-Depth Analysis of the Plasma Proteome in ME/CFS Exposes Disrupted Ephrin-Eph and Immune System Signaling" by Hanson et al Report of a pilot study of 20 ME/CFS patients and 20 controls, all female. From the abstract: "Significant differences in the levels of 19 proteins between cohorts implicate pathways related to the extracellular matrix, the immune system and cell–cell communication... Our results illustrate the promise of plasma proteomics for diagnosing and deciphering the molecular basis of ME/CFS." Paper here Thread here Biomolecules "ME/CFS: The Human Herpesviruses Are Back!" by M E Ariza. In this review article the author describes the limitations of past studies of the possible role of herpes viruses in ME/CFS. From the abstract: 'New studies using more advanced approaches have now demonstrated that specific proteins encoded by EBV could contribute to the immune and neurological abnormalities exhibited by a subgroup of patients with ME/CFS.' Article here Thread here Research Square Preprint Short report: "Exosome-associated Mitochondrial DNA is Elevated in Patients with ME/CFS and Stimulates Human Cultured Microglia to Secrete IL-1β" by Theoharides et al. From the abstract: 'Here we show that serum mtDNA, associated with exosomes, is increased in ME/CFS after exercise. Moreover, exosomes isolated from patients with ME/CFS stimulate signicant secretion of IL-1β from cultured human microglia. Conclusion: These results provide evidence for a potential novel pathogenetic factor and target for treatment of ME/CFS.' Article here Thread here Preprint "The Reification of the Clinical Diagnosis of ME/CFS as an Immune and Oxidative Stress Disorder: Construction of a Data-Driven Nomothethic Network and Exposure of ME/CFS Subgroups" by Maes et al. An attempt to analyse mathematically some biomedical data and divide patients into different immune groups. Article here Thread here Frontiers in Medicine - Infectious Diseases "Hypothesis: Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie ME/CFS" by Bergquist et al. The authors advance the hypothesis that maladaptive mechanisms that prevent recovery in some ICU patients may also underlie ME/CFS. "Specifically, these mechanisms are: (a) suppression of the pituitary gland's pulsatile secretion of tropic hormones, and (b) a “vicious circle” between inflammation, oxidative and nitrosative stress (O&NS), and low thyroid hormone function." Article here Thread here European Journal of Nuclear Medicine and Molecular Imaging "F-FDG brain PET hypometabolism in patients with long COVID" by Guedj et al. A retrospective study of PET scans of the brains of 35 patient and matched controls found hypometablism in some specific parts of the brain that related to symptoms in post Covid patients who still had symptoms weeks after infection. Paper here Thread here ............... Other research Journal of Health Psychology "The draft updated NICE guidance for ME/CFS highlights the unreliability of subjective outcome measures in non-blinded trials" by Vink & Vink-Niese In this editorial Mark Vink and Alexandra Vink-Niese reflect on the draft for the new NICE guideline on diagnosis and management of ME/CFS. They also criticize a recent editorial in the BMJ by Turner-Stokes and Wade that recommended studies into the efficacy of individualised multidisciplinary rehabilitation treatment in ME/CFS. Article here Thread here Fatigue: Biomedicine, Health & Behavior “Updating the National Academy of Medicine ME/CFS prevalence and economic impact figures to account for population growth and inflation” by Jason & Mirin. In this paper, Leonard Jason and Arthur Mirin update the US prevalence and economic impact estimates of the 2015 report on ME/CFS by the National Academy of medicine, into account growth in population, economic inflation, and inclusion of children. The new estimates result in a rough doubling of the ME/CFS prevalence and economic impact figures in the US. Article here Thread here MedRxiv preprint “Discernment of Mediator and Outcome Measurement in the PACE trial” by Carr et al. In this preprint, the authors use data from the PACE trial to test whether mediator and outcome measures, used in an earlier mediation analysis, where distinct. Based on their statistical analysis, the authors conclude this was indeed the case: “Out of 26 mediator-outcome pairs considered, only six showed 26 evidence of cross-loading items.” Article here Thread here ................ Coming events Norway Digital ME conference in Stryn - April 13-14th 2021 with lecturers including David Tuller, Mady Hornig, Jonas Bergquist, Ingrid Rekeland, Øystein Fluge, Ola D. Saugstad and more. The conference is a private initiative and has a website in both Norwegian and English. Website here Thread here ................. Covid-19 and ME BMJ Opinion Professor Paul Garner has published the latest in a series of BMJ blogs about his experiences with post Covid-19 symptoms. In previous articles he praised advice from people with ME and a pacing support group for helping him and others with managing post Covid-19 symptoms. In this article he has repudiated support groups and now says he has cured himself by only listening to those who have recovered, and retraining his thoughts with what appears to be the Lightning Process. The article is causing serious concern about misleading and unscientific statements that will harm others. These concerns are spelled out in the many responses under the article. Article here Thread here Three excellent analyses of the BMJ Blog: Dr. David Tuller "Professor Paul Garner's BMJ Blog Post on His Powerful Cognitions" "Given that his story is unsupported by the evidence from research on “recovery” from ME/CFS, his experience represents no more than his own experience. It’s a shame he wants to extrapolate his tale to apply to everyone, and that BMJ has enabled his efforts to do so." Article here Thread here Prof. Brian Hughes "Beware the COVID-sceptic doctors" "We can all say something bizarre if we want to. Only some of us, however, are ever given a high-profile platform from which to publish it to the world. Self-belief in one’s own omnicompetence is a common affliction, especially so in the opinion pages of medical journals. We should all be wary of such knee-jerk expertise." Article here Thread here Healthcare Hubris blog "Health politics in action? Professor Garner’s change of heart on Long Covid (and ME/CFS)". Former clinician, 'Nemesis', describes the changes in Garner's attitude to his post Covid-19 symptoms as he gradually recovered. The article sets the story in a wider context, examining the impact of Garner's conversion to the BPS approach on attitudes of clinicians, the public and governments, and consequently on those less fortunate who do not recover. A postscript highlights the BBC interview in which Prof Garner and Dr Clare Gerada, a prominent GP and BPS proponent, describe their recovery from post Covid-19 symptoms, and recommend exercise and positive thinking as cures. Article here Thread here ............ Sweden Opinion piece in the newspaper Aftonbladet from three patient organisations for ME, Covid and infectious diseases on the need for improving care for these patient groups. Opinion piece here Thread here The San Diego Union Tribune "Long-haul COVID cases shed new light on chronic fatigue sufferers" On similarities between Long Covid and ME. Interviews with among others Prof. Leonard Jason and Dr. Peter Rowe who tells about his clinical approach and of some of ME's history. Article produced by Kaiser Health News. Article here Thread here The Open Notebook "How to report with accuracy and sensitivity on contested illnesses" by Julie Rehmeyer. Describes key steps science writers need to take to write accurately about long Covid. 'Journalists will play a major role in determining whether these new chronically ill patients face the same ignorance and disregard experienced by patients with other contested illnesses.' Article here Thread here Other items of interest Women's Health "Long Covid: Why Recovering From Covid-19 Is a Feminist Issue" Article here Thread here STAT News "Denies treatments, some Covid-long-haulers could become lifelong-haulers" Article here Thread here UNDARK "When Children's Covid-19 Symptoms Won't Go Away" Article here Thread here ................. S4ME social media: Facebook, Twitter and You Tube
