This thread has a Science for ME 'News in Brief' post for each week in January 2022 including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.
Week beginning 3rd January 2022 News, articles and advocacy UK ME Association Free Booklet: An ME Association Summary of the New NICE Guideline for ME/CFS 'The booklet features the main clinical recommendations from the guideline which we hope will be effectively implemented by healthcare providers as soon as possible. It has been written by Dr Charles Shepherd, Hon Medical Adviser to the ME Association and Member of the NICE guideline committee.' Article here Booklet (28 pages pdf) here Thread here ME/CFS Alert Episode 130 Llewellyn King interviews patient advocate Rivka Solomon about her huge effort for the patient community over many years. Interview here Thread here Medscape Fast Five Quiz: Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) A quiz for health care workers based on the consensus recommendations from the US ME/CFS Clinical Coalition. The quiz also has additional information, including that CBT/GET are outdated treatments and with a clear recommendation of pacing. Quiz here Thread here Trial By Error by David Tuller Awaiting Response on Chalder Paper; Australian GPs Still Promoting GET and Citing PACE David Tuller and Prof. Brian Hughes are still waiting for a proper response after having called for a retraction of a paper by Prof. Chalder et al in the journal Occupational Medicine. The website of the Royal Australian College of General Practitioners has not updated its section about GET and CFS since 2015. It has PACE as a key reference and highlights the 1994 Fukuda case definition. Tuller suggests they keep up. Article here Thread here .................. In memory Gary Burgess We are sad to report the news that Gary Burgess passed away this week of cancer aged 46. When he was diagnosed with ME, Gary used his journalistic skills to make two series of excellent podcast interviews called 'The ME Show' in 2018/19 for the UK ME Association which are still available. Gary was a lovely man and will be much missed by the ME community, his colleagues at ITV and his family and friends. ITV article here ME Association article here ME Show podcasts here Threads here and here (members only) ................ Research Frontiers in Neuroscience "Submaximal Exercise Provokes Increased Activation of the Anterior Default Mode Network During the Resting State as a Biomarker of Postexertional Malaise in ME/CFS" by Rayhan and Baraniuk 34 ME/CFS and 24 control subjects. Two submaximal exercise tests on consecutive days, with MRI scans, orthostatic and symptom assessments before and after. Differences found in activation of part of the pre frontal cortex and reduced cerebral blood flow in ME/CFS suggested these measures could be a biomarker for PEM and symptom exacerbation in ME/CFS, and comparisons could be made with other conditions. Paper here Thread here Frontiers in Neurology - Applied Neuroimaging "Brainstem Abnormalities in ME/CFS: A Scoping Review and Evaluation of Magnetic Resonance Imaging Findings" by Nelson et al Reviewed 11 MRI studies. The authors suggest there is evidence of abnormalities of the functional connectivity within the brainstem and with other brain regions with 'possible mechanisms including astrocyte dysfunction, cerebral perfusion impairment, impaired nerve conduction, and neuroinflammation involving the brainstem'. They suggest this may help explain 'a substantial proportion' of ME/CFS symptoms. Paper here Thread here Journal of Translational Medicine "Comparison of assessment scores for fatigue between multidimensional fatigue inventory (MFI-K) and modified chalder fatigue scale (mKCFQ)" by Lim & Son Korean researchers have modified the Chalder Fatigue Scale and compared its fatigue scores to the Multidimensional Fatigue Inventory. Article here Thread here Frontiers in Immunology “Lasting Immunological Imprint of Primary Epstein-Barr Virus Infection With Associations to Chronic Low-Grade Inflammation and Fatigue" by Fevang et al. This Norwegian study reports that patients who developed chronic fatigue after infectious mononucleosis, show signs signs of T-cell activation and low-grade chronic inflammation. Article here Thread here ................ Coming events Solve M.E. Webinar "Using Data Analysis to Study ME/CFS and Long COVID" January 21, 10-11 AM Pacific Time/1-2 PM Eastern Time Data mining expert and 2021 Stupski Award recipient Efthymios Kalafatis will discuss his research. Register here Thread here Solve M.E. Webinar "Ampligen: A General Overview and the Plan for ME/CFS & Long Covid" January 27, 10-11 AM Pacific Time/1-2 PM Eastern Time Representatives from AIM ImmunoTech will discuss plans for clinical studies of the drug Ampligen. Register here Thread here Monthly Webinar Series: "Long COVID & Fatiguing Illness Recovery Program" January 13, Noon Pacific Time/3:00 PM Eastern Time This webinar series, funded by the CDC, will take place the second Thursday of each month. The goal is to "disseminate Post-acute Sequelae of COVID-19 (PASC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) findings and emerging best practices." Register here Thread here ................ Other conditions and topics related to ME Your Fantastic Mind: "Long Covid and Making of a Brain Surgeon" The first part of this PBS TV show (Season 3, Episode 2) is on Long Covid. At about 11-12 minutes into the program the connection between Long COVID and other post-viral illnesses (ME/CFS, POTS and Mast Cell Activation Syndrome) is discussed. Video here Thread here Medium Covid wasn't my first rodeo Article from December 2021 by Sara Laskowski. She has a background in public health and has been shocked to learn the history of post-viral conditions when she herself became sick with long COVID. "Unless education changes, we will simply be raising another generation of public health professionals who view epidemic outcomes as binaries of either death or recovery". Article here Thread here Trial by Error by David Tuller Dutch CBT Trial Targets "Dysfunctional Beliefs About Fatigue" in Long Covid Patients A critical look at the protocol of a Dutch study on treatment with CBT of post-infectious fatigue after Covid-19. The intervention is based on an existing CBT manual for CFS and the trial is unblinded with self-reported, subjective outcomes. Article here Thread here San Fransisco Chronicle Think 'mild' omicron is no big deal? Here's what long COVID symptoms feel like Opinion piece by Effie Seiberg who has suffered from ME/CFS for four years and warns people against winding up with ME/CFS after infection with Covid-19. Article here Thread here Other items of interest The Guardian Could micro clots help explain the mystery of long Covid? by Resia Pretorius Opinion piece here Thread here New Atlas Long COVID is still a threat after mild infections, researchers warn Article here Thread here ................ S4ME social media: Facebook, Twitter and YouTube
Week beginning 10th January 2022 News and media Dialogues for a Neglected Illness Additions to the website include pdf transcripts for 4 of the videos, and endorsements of the project. The latest video 'The Tangled Story of ME/CFS' has been added to the Forward ME website. Website here Forward ME here Thread here Podcast Interview with Dr. Peter Rowe The podcast "Dr. M's Women and Children First" interviews Dr. Peter Rowe on ME and on Long Covid. Duration: 1 hour and 10 minutes. Podcast here Thread here Denmark The Danish newspaper Avisen tells the story of the young woman Amalie who didn't recover after mononucleosis. She suspect she might have developed ME, but struggles to find doctors who can help. Article here Thread here USA The American ME and CFS Society (AMMES) has published their January 2021 newsletter. Newsletter here Thread here ................... Resources for doctors Doctors with ME "Putting it into Practice: What NICE ME/CFS means for GPs" An excellent brief guide for GP's on what ME/CFS is and diagnosing and caring for patients with ME. It raises important issues such as safeguarding and the care needs of people with severe ME/CFS. A helpful guide to send to GP's. Article here Thread here "NICE ME/CFS 2021: Q&A summary for GPs" A 4 page PDF summary of key points from the NICE guideline. PDF link here ............... Research and research news MedRxiv preprint (not yet peer reviewed) "Evidence for Peroxisomal Dysfunction and Dysregulation of the CDP-Choline Pathway in ME/CFS" by Lipkin et al. '.. analysis of 888 metabolic analytes in plasma samples of 106 ME/CFS cases and 91 frequency-matched healthy controls.' The abstract concludes: 'Our findings are consistent with earlier ME/CFS work indicating compromised energy metabolism and redox imbalance, and highlight new abnormalities that may provide insights into the pathogenesis of ME/CFS.' Paper here Thread here Medicina "Psychogenic Pseudosyncope: Real or Imaginary? Results from a Case-Control Study in (ME/CFS) Patients" by van Campen and Visser Extracranial Doppler measurements for cerebral blood flow combined with tilt table testing showed that 30 ME/CFS patients diagnosed elsewhere with 'conversion or psychogenic pseudosyncope' actually had greater reduction in cerebral blood flow when upright than 30 patients not suffering syncope (fainting) when upright, thus a physiological explanation, not a psychological one. Paper here Thread here International Journal of Molecular Sciences "Commonalities in the Features of Cancer and Chronic Fatigue Syndrome (CFS): Evidence for Stress-Induced Phenotype Instability?" Rusin et al In this narrative review the authors look at similarities and differences between cancer related fatigue and ME/CFS, including causes, symptoms and physiology. Article here Thread here NIH webinar: "RTI International, Data Management Coordinating Center (DMCC) for MECFSnet" RTI International describes its role as the Data Management Coordinating Center (DMCC) for the ME/CFS Research Network and how tools developed by the DMCC can advance ME/CFS research. Video here Thread here BMJ Open “Perceived working mechanisms of psychosomatic therapy in patients with persistent somatic symptoms in primary care: a qualitative study” by Wortman et al. This Dutch study explored the views of patients and therapists on the assumed working mechanisms of psychosomatic treatment for persistent somatic symptoms. Article here Thread here Cogut Institute for the Humanities, Brown University - Emily Lim Rogers: Unraveling the Knot of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) An interesting Q&A with Emily Lim Rogers about her current research project on ME, "probing what scientific uncertainty about the illness reveals about the fraught gendered and racialized dynamics that determine who is considered ill and examining the uneven uptake of debility in the sociocultural contexts of the United States". Article here Thread here .................. Other conditions and topics related to ME Science "Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis" by Bjornevik et al A study based on incidence of MS in the US military found that 'Risk of MS increased 32-fold after infection with EBV but was not increased after infection with other viruses' and that seroconversion for an MS biomarker 'increased only after EBV seroconversion'. Abstract here Thread here Psychology Today “COVID-19 and Post-Infection Illness” by Ilene S. Ruhoy In a brief article Neurologist Ilene Ruhoy highlights that post-infectious illness is not new in medicine, pointing to acute demyelinating encephalomyelitis (ADEM), transverse myelitis (TM), febrile infection-related epilepsy syndrome (FIRES), Guillain Barre syndrome (GBS), and ME/CFS as examples. Article here Thread here Maclean's Chronic exhaustion, derailed lives and no way out. This is long COVID. Article includes interviews with among others ME/CFS patient advocate Sabrina Poirier who had to pay privately to get help in USA from an ME/CFS specialist, Researcher Dr. Amir Landi who says years of research has been lost due to ME/CFS being downplayed and Simon Décary who calls for a change in Canada's approach to complex diseases. Article here Thread here The Times Could this scientist have the answer to long Covid? Feature article about Ron Davis, how he entered the ME field, his research into ME and the importance of research into post-viral illness. Article here Thread here Rolling Stones What the Long Covid Numbers Aren't Telling Us On the challenges of getting an accurate overview of Long Covid prevalence. Includes quotes from Jaime Seltzer from #MEAction who says: "Studies are measuring Long Covid at different intervals and capturing different populations within Long Covid, which may explain the discrepancy in the statistics". She also says that data gathered shortly after Covid-19 infection can identify recoverable post-viral fatigue, but miss people who later develop ME/CFS. Article here Thread here Trial by Error by David Tuller French Dogs on the Trail: Impact of Long Covid on the US Job Market About a recent preprint from France where dogs could identify "the odors of chemicals produced as part of host response to SARS-CoV-2 infection" in sweat samples from patients with long Covid. Tuller also writes about an article from Brookings institute (see item below) estimating that "about 15% of the current labor shortage could be related to long Covid". Article here Thread here Stuff The narrative of Omicron as a 'milder' variant is dangerous, given what we know about long Covid, experts warn Article mentions professor and ME researcher Warren Tate who is currently working with Dr. Anna Brooks on long Covid and post-viral illnesses. They have also been working with Professor Resia Pretorius in South Africa, whose team discovered micro clot formation in the blood of long Covid patients. Article here Thread here Other items of interest New Zealand Herald Long Covid and ME/Chronic Fatigue Syndrome: Life with a post-viral illness by Michael Hall Article here Thread here Brookings Is 'long Covid' worsening the labor shortage? Article here Thread here .................. S4ME social media: Facebook, Twitter and YouTube
Week beginning 17th January 2022 News, articles and advocacy Trial by Error by David Tuller Q-and-A with Natalie Boulton, Director of "Dialogues for a Neglected Illness" Tuller interviews Natalie Boulton who is behind the magnificent ME documentary series titled Dialogues for a Neglected Illness. Boulton tells of how the series came about and of some of its impact. Interview here Thread here Nina E. Steinkopf, patient advocate, has written a blog article where she compares aspects of the controversial and alternative method Lightning Process with classical red flags of religious sects. The article is translated into English. Article here Thread here .................. In Memory Ronald G. Tompkins Open Medicine Foundation (OMF) shared the sad news of the sudden passing of their Chief Medical Officer, Ronald G. Tompkins, MD, ScD – "a leader in the ME/CFS research community, and a dear friend to all." Announcement here Thread here .................... Research Vascular Pharmacology "Decreased NO production in endothelial cells exposed to plasma from ME/CFS patients" by Bertinat et al. This laboratory based study cultured endothelial cells with plasma from small groups of ME/CFS patients and healthy controls. In a series of experiments 'ME/CFS-plasma reduced the ability of ECs to produce NO [nitric oxide]'. This adds to understanding of previous research that showed endothelial dysfunction in blood vessels of a subset of people with ME/CFS. Paper here Thread here Frontiers in Immunology Review article: "The Gut Microbiome in ME/CFS" by König, Scheibenbogen et al Based on a literature review, the authors suggest antibiotic use through life causing gut dysbiosis as a possible cause for ME/CFS, and suggest longitudinal studies to learn more, and possible interventions with diet and faecal transplant. Article here Thread here ................... Survey Liverpool University "An international survey of experiences and attitudes towards Transcutaneous Vagus Nerve Stimulation for people with ME/CFS" Dr Nicola Clague-Baker of Physios for ME is running this survey at the request of patients who use this treatment. 'The study is international and open to anyone with a diagnosis of ME who currently uses tVNS or has tried to use in the past.' Closing date 11th February. Article here Thread here ................. Coming Events UK DecodeME webinar on Thursday 27th January at 10-11am to explain the recruitment process and answer questions. You can sign up to participate on Zoom, watch on Facebook, or see the video or transcript later. DecodeME will start inviting a small group of patients to participate in the research from 31st January to test the paper, telephone and online systems and give feedback before the whole project gets under way. Article here Thread here ................... Other conditions and topics related to ME The Philadelphia Inquirer I have a chronic illness. During COVID, isn't my life worth protecting? Opinion piece from patient advocate and ME sufferer Jennie Spotila who is of high risk for complications if she gets infected with Covid-19. "No one should be encouraged because COVID-19 kills disabled and chronically ill people more often than it kills healthy people. Instead, this fact should motivate everyone to continue taking the actions they can to protect the vulnerable members of our population". Article here Thread here FNIH Post-Acute Sequelae of COVID-19 (PASC) Recording from a recent seminar series hosted by Foundation for the National Institutes of Health with lecturer Peter Rowe MD giving a talk titled: Observations on Long Covid through a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) lens. Duration: 55 minutes Lecture here Thread here Science "Nervous system consequences of COVID-19" by Serena Spudich and Avindra Nath In this article on nervous system complications of COVID-19 ME/CFS gets a brief mention as a similar disease, "which is also considered to be a postinfectious syndrome caused by a variety of infectious agents. Because the pathophysiology of ME/CFS is poorly understood and there are no effective disease-modifying therapies available, it is likely that the study of Long Covid may benefit ME/CFs patients as well". Article here Thread here The Times "Long Covid leaves wave of wearied souls in pandemic’s wake. A lack of data and definition is isolating the potential millions left with long Covid, Tom Whipple writes" The article provides some information about prevalence and research, but also gives prominence to Paul Garner's version of his recovery which he attributes to positive thinking. David Marks, editor of the Journal of Health Psychology, has responded on his blog with a short article 'Trash Science of Positive Thinking'. He criticises Whipple for lazy journalism, and says: "Victim-blaming, gaslighting and the ‘all-in-the-mind’ philosophy of lazy doctors will become the mainstay of Long-Covid patients’ everyday experience. Just like the MECFS patients before them." Times article here Marks' article here Thread here Other items of interest VeryWell Health What Should We Expect From Long COVID Treatment? Article here Thread here Vox How to spot the signs of long COVID - and what to do next Article here Thread here NBC Boston 'Worst Hell You Could Ever Imagine': Study Hoped to Shed Light on Long-Haul COVID Article here Thread here ................. S4ME social media: Facebook, Twitter and YouTube
Week beginning 24th January 2022 News, articles and advocacy Podcast The Feel Good Café The Energy Envelope Theory for Patients with ME, by Professor Leonard Jason "In this podcast episode, Prof. Leonard Jason discusses how myalgic encephalomyelitis became chronic fatigue syndrome. He also covered the difference in fatigue someone with depression may experience in comparison to patients with ME. He then talked to me about the Energy Envelope Theory he developed which could help us live according to available energy levels." Duration: 37 minutes. YouTube video here Thread here Emerge Australia is inviting people with ME and carers to sign up for facilitated online peer support groups starting in February and March. Article with details here Thread here UK: ME Local Network has been set up recently for local ME groups to communicate, work together and support each other. They are inviting local groups to join them, and currently running surveys on contacting your MP and on experiences of claiming Personal Independence Payments. Brief information here Thread here NICE ME/CFS guideline Documents have been obtained under Freedom of Information from the time period between the pause and publication. The Royal College of Psychiatrists continued to argue about the evidence review, claiming evidence of efficacy for GET and CBT was wrongly discounted, including the PACE trial. A representative from the Royal College of Physicians also argued about evidence, and wrote in favour of a role for rehabilitation specialists. Documents linked here Thread here (members only) Society to Improve Diagnosis in Medicine Understanding ME/CFS and Long COVID as Post-Viral Conditions Great interview with Jamie Seltzer, Director of Scientific and Medical Outreach at #MEAction. It covers topics including ME, Long Covid, post-viral diseases in general, PEM and disparities in health care. Article here Thread here Infection Control Today Long COVID Shouldn't Have Taken Us by Surprise An article about how symptoms of Long COVID matches those of ME/CFS. Adriane Tillman from #MEAction is interviewed and says: "Long COVID is not a new phenomenon—there are millions of Americans who got sick with a virus and never recovered before the pandemic, and developed ME/CFS. The only difference is that we are seeing this happen now in real time on a massive scale.” Article here Thread here Cambridge Independent UK Cambridge ME Support Group chair welcomes Moderna vaccine trials for Epstein-Barr virus Interview with Mark Harper, chairman of the Cambridge ME Support Group, on Moderna's development of a vaccine against Epstein-Barr virus, which may prevent cases of ME. Harper also mentions the new NICE guidelines, but that despite this good news, relief is mixed with anger at the level of ignorance about ME. Article here Thread here ...................... Useful resources Learning modules In a UK ME Association article, "New CPD learning module from MIMS Learning on the new NICE guideline", Dr Shepherd says: 'Overall, this CPD module about the new NICE Guideline is well worth recommending to your GP – in addition to the excellent Study PRN CPD module that Dr Nina Muirhead has already produced about ME/CFS.' Article here Thread here ................... Petition Denmark petition anyone can sign. Kristine and Jørgen Michelsen have written a petition urging Danish health authorities to keep up with international evidence based guidelines for ME, such as the NICE guidelines. Petition here (in Danish) Thread with information on how to sign here ...................... Research, research news and commentary DecodeME webinar held this week is now available to watch. Duration 58 minutes. Sonya Chowdhury and Professor Chris Ponting explain the recruitment process, and Claire Tripp, a carer and part of the study’s Patient and Public Involvement steering group, explains the role patients and carers are playing in making the study as inclusive as possible. Thread with link to webinar here Behavior Therapy “Generalised worry in patients with Chronic Fatigue Syndrome following Cognitive Behavioural Therapy - a prospective cohort study in secondary care” by Kalfas et al. The research team of Trudie Chalder reports that the prevalence of generalized worry is high in ME/CFS patients. They argue that this should be targeted with cognitive behavior therapy (CBT). Article here Thread here Trial by Error by David Tuller CBT for CFS Should Target "Problematic Worry," Says New Study from Professor Chalder Tuller raises several problematic aspects with the above paper by Chalder. "The article is based on the questionable notion that it is possible to tease out excessive or abnormal levels of "generalised worry" from people's experience of having a chronic disabling disease - especially one that is routinely misinterpreted by people like Professor Chalder as psychologically and behaviourally driven". Article here Thread here The Netherlands ReCOVer trial Several ME/CFS advocates have made objections to the funding of the ReCOVer trial which will test the efficacy of cognitive behavior therapy in patients with long COVID. Lou Corsius reports on the latest developments. His blog post includes a transcript of a conversation with Hans Knoop, principal investigator of the ReCOVer trial. Article here Thread here PTJ: Physical Therapy & Rehabilitation Journal “Chronic Fatigue and Postexertional Malaise in People Living with Long COVID: An Observational Study” This study reports that postexertional symptom exacerbation affected most patients suffering from long COVID. 58.7% met the PEM scoring thresholds used in ME/CFS research. The authors conclude that “Postexertional symptom exacerbation must be considered, and rehabilitation needs to be carefully designed based on individual presentation.” Article here Thread here Nature Communications "Immunoglobulin signature predicts risk of post-acute COVID-19 syndrome" by Cervia et al Data from one group of 215 patients was used to develop a predictor for developing Long Covid that combined immunoglobulins, age, history of asthma and acute covid symptoms. This was validated on a second group of 395 patients. Paper here Thread here MedRxiv preprint “I feel like my body is broken”: Exploring the experiences of people living with long COVID by Wurz et al This survey based study identified 4 themes - multiple debilitating symptoms, impact on daily living, inability to be physically active and 'I keep asking for help, but no one is listening, and very little is working.' Paper here Thread here MedRxiv preprint (not yet peer reviewed) "The Effects of Messaging on Expectations and Understanding of Long COVID: An Online Randomised Trial" by Bhogal et al. A team from the Behavioural Science and Insights Unit, UKHSA, did an online survey of 1110 healthy people presented with scenarios of long Covid. See David Tuller's commentary below. Article here Thread here Trial by Error by David Tuller Does "Long Covid" Need Rebranding As "Ongoing Covid-19 Recovery" David Tuller takes a critical look at the above preprint from the UK's Health Security Agency on whether the definition "Long Covid" itself can effect prognosis and outcome for sufferers. The paper is based on answers from a questionnaire presenting a hypothetical scenario. It concludes that the term should be replaced and that uncertainty about the condition should be downplayed to patients. Article here Thread here Current research in the UK Forum member Andy has compiled a list of all ME/CFS and related research currently funded and under way in the UK, including funding by public bodies and charities. Thread here ..................... Other media items Forbes Even Mild Covid-19 Can Cause Brain Dysfunction And Cognitive Issues Article here Thread here News Medical The long-term neurologic consequences of COVID-19 Article here Thread here UCSF Magazine The Long Haul Article here Thread here Waterford News & Star The endless road of long covid Article here Thread here The Guardian Long Covid: doctors find 'antibody signature' for patients most at risk Article here Thread here Daily Mail Long Covid expert says the world is in 'deep trouble' Article here Thread here BBC Inside Science Predicting Long Covid, and the Global Toll of Antimicrobial Resistance Podcast here Thread here The Osterholm Update: COVID-19 Episode 88: Vaccines, Variants, and Long COVID Podcast here Thread here ..................... S4ME social media: Facebook, Twitter and YouTube
