This thread has a Science for ME 'News in Brief' post for each week in September 2022 by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.
Week beginning 29th August 2022 News, articles, advocacy Norway Article about Røysumtunet, Norway's first institution with an offer for severe ME patients. Prof. Saugstad says the most severe ME patients are often more sick than patients at ICU wards. At Røysumtunet the patients are not being pushed, and they are seeing some improvement in some of the patients. Article here Thread here UK Forward ME steering group minutes 10th August. Topic covered include Charles Shepherd's work on monitoring NICE guideline compliance; Department of Health and Social Care working groups; Millions Missing; and Decode ME. Minutes here Thread here UK ME Association Charles Shepherd reports that the NHS Recovery College, which provides courses for people with mental health problems, has updated its information on ME/CFS to comply with the NICE guideline. The content is improved but forum members note that there is still a patient's story that gives an atypical and therefore unhelpful impression of ME/CFS. Recovery College here MEA article here Thread here Trial by Error by David Tuller Professor Crawley Was Asked to Correct Ethics Statements in 11 Papers; 7 Are Still Uncorrected Prof. Crawley has exempted several studies from ethical review based on a letter from a research ethics committee concerning unrelated data collection. In 2018 Tuller alerted the Health Research Authority who concluded this as inappropriate, but a majority of the papers are still left uncorrected. Article here Thread here My Letter to Bristol and the Health Research Authority About Uncorrected Crawley Papers A letter from Tuller urging Bristol and the Health Research Authority to find out why the corrections haven't yet been made and to ensure they happen promptly. Article here Thread here #MEAction continues their "Facets of ME" series with an article on travel tips for people with ME. Article here Thread here Bateman Horne Center has posted two new videos on orthostatic intolerance: Part 1: Assessment and Part 2: Management. These are from the Project ECHO series for PASC (Long COVID) and Post-Viral Syndromes. Part 1 here Part 2 here Thread here New Zealand - Stuff "Kiwis with chronic fatigue 'extremely disappointed' officials won't reclassify illness" reports on the government's refusal to classify ME/CFS as a disability following an ANZMES petition to parliament with 6444 supporters. Article here Thread here Germany WSWS Long COVID: Dramatic consequences seen among top German athletes Sports physician Dr. Steinacker estimates that 5% of athletes still have symptoms 3-6 months after Covid-19. "These include heart and lung problems, neurological complications, such as loss of taste and coordination disorder, and chronic fatigue syndrome". Article here Thread here Science News Who has the highest risk of long COVID? It's complicated On some of the complexities of studying Long Covid. Includes mentions of similarities of ME/CFS and a hypothesis about Epstein-Barr virus as a mutual link. Nancy Klimas has received funds from the CDC to compare Long Covid and ME/CFS. Article here Thread here PNAS Lots of long COVID treatment leads, but few are proven On various hypotheses and possible treatment approaches. Includes interviews with among others Michael VanElzakker and David Strain. Article here Thread here ............. Coming events UK Millions missing 13th September 1 pm to 3pm Parliament Square, London organised by #MEAction UK. Speakers include Professor Douglas Kell on microclots, and Dr Eliana Lacerda of CureME. Details here Thread here Genetics Symposium Action for M.E. and the MRC Human Genetics Unit, University of Edinburgh are holding a genetics research symposium on 14th September 2022, at the University of Edinburgh and online. Open to all. 'The symposium will bring together researchers interested in ME, people with ME, carers and potential funders to drive collaboration in this field and develop a 10 year programme of ME/CFS genetics research.' Thread here USA - Solve M.E. webinar "The GIC - Solve Long Covid Initiative Program Series: Congressional Panel" September 8 at 10 am Pacific Time / 1 pm Eastern Time. Topic: "What are the key priorities for current and future Long COVID policy?" Speakers include Congressmen Jack Bergman of Michigan, Congressman Don Beyer of Virginia, and Senator Edward Markey of Massachusetts. Register here Thread here USA - Solve M.E. webinar "OT: The Role of Occupational Therapy in Care for ME/CFS" September 15 at 10 am Pacific Time / 1 pm Eastern Time. Amy Mooney, MS OTR/L, will share her expertise on occupational therapy's role for providing symptom management and improving the quality of life for individuals with ME/CFS. Register here Thread here September IACFS/ME Virtual Journal Club will be held on September 16 at 10 am Pacific Time / 1 PM Eastern Time. The topic is “Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Results in Sustained Symptom Improvement in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" by Pereira, Gerard, et al. Register here Thread here Finland "ME/CFS + Long COVID" Conference in Tempere, 7-8th Oct This international conference is organised by The Finnish Association of Orthopaedic Manual Therapy. Among the lecturers are Peter Rowe, Ola D. Saugstad, David M. Systrom and Betsy Keller. It's possible to participate via streaming. More information here Thread here .............. Research news and commentary UK Physios for ME pilot study recruiting. "A pilot study to identify the feasibility for a definitive study that will investigate the effectiveness of pacing with a heart rate monitor for people with ME and long COVID." Participants wanted in the Manchester and nearby areas who have not used heart rate monitoring for pacing. Details here Thread here Workwell Foundation posted links to research highlights, done in collaboration with the Cornell Center for Enervating NeuroImmune Disease, that were presented at the recent IACFS/ME conference. Links here and here Thread here .............. Research Biochemical Journal "The potential role of ischaemia-reperfusion injury in chronic, relapsing diseases such as rheumatoid arthritis, Long COVID, and ME/CFS" by Kell and Pretorius The authors review evidence for their microclots findings in several diseases, and hypothesise that this could lead to reperfusion injury. They discuss possible treatments including anti inflammatories and anti clotting drugs. Article here Thread here Nature Communications “A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity” by Kedor et al. This German study investigated 42 post-COVID-19 syndrome patients. 19 of them fulfilled the Canadian criteria for ME/CFS. Article here Thread here .............. S4ME social media: Facebook, Twitter and YouTube
Week beginning 5th September 2022 News, articles, advocacy Survey The Norwegian ME Association is running a survey in English titled "ME/CFS - course of illness survey" and invites anyone with ME to participate. It has two sections that takes less than 10 minutes to answer. First section is about patient's ME and their experiences, the second section concerns details about one's functionality. Survey here Thread here and here GRID How long covid studies could help scientists solve the long-unsolved mystery of post-viral illness A thorough article on post viral illness with quotes from several familiar names from research and advocacy into ME. It presents current hypotheses and also emphasises the importance of collaboration between researchers and patients. Article here Thread here Today, Explained Podcast episode on Long Covid where Dr. Monica Verduzco-Gutierrez provides information on clinical features and also mentions that some of the patients are meeting criteria for ME. Also has an interview with Hannah Davis from Patient-Led Research Collaboration who says: "There is an amazing community of post-viral researchers. And [they] are not confused by long Covid. They don't describe long Covid as a mystery. They understand what happens after viruses. They knew this was coming." Podcast here Thread here Science Understanding myalgic encephalomyelitis Perspective article by Sonya Marshall-Gradisnik and Natalie Eaton-Fitch on possible pathomechanisms of ME and that similar symptoms also occur in Long Covid. Article here Thread here Medscape Post-COVID Fatigue, Exercise Intolerance Signal ME/CFS Article by Miriam Tucker on a recent observational study on post-Covid-19 by Scheibenbogen et al. Carmen Scheibenbogen, MD, says: "The major finding is that ME/CFS is indeed part of the spectrum of the post-COVID syndrome and very similar to the ME/CFS we know after other infectious triggers". Anthony L. Komaroff, MD comments: "the study does not help in determining what fraction of all people who are infected with SARS-CoV-2 go on to develop a condition like ME/CFS, nor how long that condition will last". Article here Thread here NRK, the Norwegian public broadcaster writes about young and severe ME sufferer Aurora who is forced to live in a nursing home in lack of a more suitable care offer for her. "I am getting more sick from being here, and getting more sick from not receiving the right help". Article here Thread here The Scottish Sun I was healthy and active before illness left me bedridden - it's exhausting to be alive Article about Claire Hirst who has suffered from ME for 22 years. "It gets to the point where it's too much energy being alive. ME is so cruel; it robs you of everything". Article here Thread here Notes from a Sickbed Author Tessa Brunton has written a graphic memoir about her experiences with ME. Release date is Nov 1, 2022. Review here Thread here ME/CFS in fiction and the media There is concern about the negative portrayal of people with ME/CFS in JK Rowling's latest book in the Cormoran Strike series. Online interaction of 'spoonies' is also negatively portrayed in recent media and social media. Threads here and here Long Covid news and research of variable quality continues to appear in the media and research journals. Some recent examples include: Wealthy donors fund research on viral persistence and use of antivirals here Long Covid Physios held and international forum here A test gets EU approval here but forum members question its validity here And many research papers varying from those attempting to pin Long Covid on psychological factors, and trials of exercise, to research into physiological effects. See this forum ................ Coming events #MillionsMissing London and Scotland Postponed From MEAction UK: 'Due to the death of her majesty Queen Elizabeth II and the period of national mourning that we are entering we have postponed #MillionsMissing London that was due to take place on September 13th in Parliament Square.' Organisers hope to rearrange both events for later in September. Details here and here Thread here UK DecodeME Sheffield ME and Fibromyalgia Group webinar with Chris Ponting about DecodeME, Oct 6, 2022 02:00 PM Register here Thread here Solve ME/CFS Initiative On 24 October, Solve ME/CFS Initiative is hosting a webinar by Carmen Scheibenbogen titled: “COVID-19 as a Trigger for ME/CFS: Severity Biomarkers and Underlying Mechanisms.” Article here Thread here ............... Research news and commentary Trial by Error by David Tuller "Another CBT/GET Marketing Document Masquerading as Research from Professor Chalder" A critical look at a review titled "A systematic review of randomised controlled trials evaluating prognosis following treatment for adults with chronic fatigue syndrome" by Prof. Chalder and colleagues. In short deemed as "crap". Article here Thread here "My letter to Psych Medicine About Professor Chalder's Flawed Systematic Review" Tuller follows up the review (see item above) further in a letter to its journal's online portal, a pre-print server and directly to two co-editors of the journal: "this systematic review comes across more as a marketing or public relations document than as a legitimate work of science by disinterested investigators. It is troubling that Psychological Medicine’s editors and peer reviewers did not notice or care about these substantive deficiencies." Letter here Thread here USA - #MEAction reports that the NIH has "taken steps to fix a 'funding gap' in the timing of research awards for the ME/CFS Collaborative Research Centers (CRC) and the Data Management and Coordinating Center (DMCC)." Article here Thread here ................ Research Vascular Health and Risk Management "Chronic Fatigue Associated with Post-COVID Syndrome versus Transient Fatigue Caused by High-Intensity Exercise: Are They Comparable in Terms of Vascular Effects?" by Chudzik et al. The Flow Mediated Skin Fluorescence (FMSF) technique was used to compare long Covid patients and the effect of intense exercise using CPET on healthy amateur athletes and found comparable vascular effects. The authors conclude: 'The NOI and RHR parameters measured with the FMSF technique can be used for non-invasive clinical assessment of post-COVID syndrome as well as for monitoring the rehabilitation process.' Paper here Thread here MedRxiv preprint (not yet peer reviewed) "Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis" by Das et al Combinatorial analytics applied to genetic data from the UK biobank (not the ME/CFS biobank) found some evidence about of genes related to factors thought to be significant in ME/CFS. Preprint here Thread here Sociology of Health & Illness “Austerity and identity formation: How welfare cutbacks condition narratives of sickness” by Altermark & Plesner The researchers investigated how Swedish sick insurance has become more restrictive and how people not being granted payments, despite being seriously ill, are affected. They conducted interviews with 30 ME/CFS patients. Article here Thread here ................. S4ME social media: Facebook, Twitter and YouTube
Week beginning 12th September 2022 News, articles, advocacy Broken Battery What is ME/CFS? Another excellent and informative video from Broken Battery about ME/CFS. This video provides a short overview of what ME/CFS is as well as diagnosis and treatment based on the new NICE guideline. Duration: 2 min 20 sec. Video here Thread here The Atlantic One of Long COVID's Worst Symptoms Is Also Its Most Misunderstood Another thorough Long Covid article by Ed Yong. This time about the symptom brain fog and it includes some mentions of ME. "It’s part of the diagnostic criteria for myalgic encephalomyelitis, also known as chronic fatigue syndrome, or ME/CFS—a condition that Davis and many other long-haulers now have. Brain fog existed well before COVID, affecting many people whose conditions were stigmatized, dismissed, or neglected." Article here Thread here Chicago Tribune Task force members: The key to demystifying long COVID-19 could come from studying another chronic condition Commentary by Leonard Jason, Hector Bonilla, Benjamin Natelson and Monica Verduzco Gutierrez on growing evidence of similarities between Long Covid and ME/CFS and the importance of including ME/CFS patients as control group in Long Covid trials. Article here Thread here USA - Why I'm Getting Arrested on Monday at the White House, and How You Can Help Article about the #MEAction Millions Missing 2022 protest planned for Washington, DC. Includes information for anyone who wants to support the protest with at-home activism. Article here Thread here See also this related thread which has information from last week's training session for volunteers. New Zealand Government Clinical rehabilitation guideline for people with long COVID (coronavirus disease) in Aotearoa New Zealand Forum members describe the guide as a mixed bag, with, for example, contradictory descriptions of post exertional malaise. Guideline here Thread here New Zealand Newsroom: "Why we must make this chronic condition a disability" by Warren Tate who argues the case for ME/CFS to be classed as a disability in support of the recent petition to the government. Tate raises the issue of Long Covid adding significantly to the numbers of people unable to work and in need of support. Article here Thread here WebMD Long COVID Was a Preventable Tragedy. Some of Us Saw It Coming Article by ME sufferer Brian Vastag who has participated in the NIH's ME/CFS study and has warned from early on that "a wave of disability would follow the novel coronavirus". Article here Thread here The World Health Organization (WHO) has released a new document, "Clinical management of COVID-19 patients: living guideline", which includes information on Long Covid ("post COVID-19 condition"). Document here Thread here KevinMD Why psychological explanations for long COVID are dangerous In this short and concise article, V. Jo Shu, PHD provides an overview of the BPS approach to ME and the current paradigm shift at science progresses. "Many have called much of the past three years "unprecedented", but ME provides critical precedents for approaching long COVID. Responses to long COVID should draw from and build on relevant clinical findings from ME research". Article here Thread here Webinar An update on NIH Research program on ME/CFS The Norwegian ME Association organised a webinar where Vicky Wittemore and Jospeh Breen provides an update on NIH research programs on ME as well as the Recover program for long Covid. Duration: 39 minutes Webinar here Thread here Law and Health blog TEN YEARS ON: “Somewhere Towards the End” Valerie Eliot Smith marks 10 years of writing about ME on her blog as well as a range of other contributions to ME advocacy, particularly in the UK. 'From 2008, with the benefit of social media and other online resources, I increased the range and scope of my research. In 2012, I set up this blog in order to publish my work on the so-called “Secret Files on ME“.' As well as 77 blog posts documenting her research and advocacy, Valerie made a significant contribution to the film, The Tangled Story of “ME/CFS”, part of the Dialogues for a Neglected Illness project. Article here Thread here Solve M.E. - OT: The Role of Occupational Therapy in care for ME/CFS presentation A recording of this Sept. 15 webinar is now available (about one hour). Video here Thread here Sports Yahoo What causes long COVID and its strange array for symptoms? Researchers have some clues The article interviews several scientists presenting hypotheses for long Covid including David Putrino and Akiko Iwasaki. Article here Thread here The Guardian Long Covid is keeping millions out of work - and worsening labor shortage in the US Opinion piece by Fiona Lowenstein and Ryan Prior. "Fixing the labor shortage means treating, accommodating and mitigating long Covid. It also requires building a society in which disabled people can participate". Article here Thread here ................ Research news and commentary UK DecodeME recruitment now open On Monday 12th September the eagerly awaited launch of recruitment started with email invitations to those who have signed up already and anyone else eligible can go straight to the website to take part. Participants need to have been diagnosed with ME (or ME/CFS, CFS or CFS/ME) by a health professional, to be aged 16 and over and be based in the UK. Participants complete the cohort selection questionnaire, and those selected are sent a spit test kit to be returned by post. Details here Take part here Thread here Week 1 update here There has been excellent media coverage of the launch. Print media: Independent, The Times, Express, Standard, BBC News Radio interviews: BBC Scotland, Times Radio, Chris Ponting on BBC Radio, Sonya Chowdhury on Radio Bristol, Sian Leary and Chris Ponting on Radio Sheffield ME/CFS Research Review Simon McGrath has written a clear explanation of the study "Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis" by Das et al (see last week's news) which was written by scientists at Precision Life who used combinatorial analysis to find groups of genes that link subgroups of people with ME/CFS. They also spoke at the recent Genetic Symposium and are hoping to use their technique on DecodeME data. Article here Thread here Survey ME/CFS - course of illness survey, 2022 The Norwegian ME Association invites anyone with ME/CFS to participate in this survey in English. "The survey consists of two sections. In the first we ask questions about you and your ME experiences at a general level. In the second section, we ask more detailed questions about your functionality". Each section takes about 10 minutes and it's possible to pause at any time. Survey here Thread here .................. Research Frontiers in Immunology "Bioinformatics and systems biology approach to identify the pathogenetic link of Long COVID and ME/CFS" by Lv et al The authors used a series of analyses of databases to identify genes common to ME/CFS and Long Covid. They identified 9 genes, and by analysing their biological pathways identified some possible drug treatments. They warn that further data and analysis would be needed before clinical application. Paper here Thread here Science Direct: JACC Case Reports "Orthostatic and Exercise Intolerance in Recreational and Competitive Athletes With Long COVID" by Rao, Systrom et al A case series of 3 athletes who developed orthostatic intolerance with Long Covid and had gone from exercising regularly to unable to tolerate normal daily activities. Graduated recumbent exercises and strength training were recommended but the authors urge caution with patients with post exertional malaise. Paper here Thread here Routledge In the book “COVID-19 and Speech-Language Pathology”, Louise Cummings reports on cognitive-linguistic difficulties in Long Covid where a control group of ME/CFS patients was used. Book chapter here Thread here Journal of Medical Internet Research (JMIR) Preprint: Return-to-Work Following Occupational Rehabilitation for Long COVID: Descriptive Cohort Study by Brehon et al. This study described the outcomes of 81 workers who participated in a Long Covid occupational rehabilitation program. Article here Thread here Sociology of Health & Illness “Austerity and identity formation: How welfare cutbacks condition narratives of sickness” by Altermark & Plesner The authors conducted qualitative interviews with 30 ME/CFS patients on their experience of being denied sick insurance by the Swedish the Social Insurance Agency (SIA). Article here Thread here SSM - Qualitative Research in Health “Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment” by Au et al. The authors analyzed results from an online survey of 335 Long Covid patients active on social media and found that experiences of “gaslighting” were common. Article here Thread here BMJ ME/CFS researcher Michael Sharpe published a letter in the BMJ titled “Medical gaslighting: to say that invoking psychological symptoms is equivalent to dismissal is reductionist’” Letter here Thread here ResearchGate “Preprint: Community nursing care for people with long COVID/post-COVID -Patient characteristics, case reports, and nursing interventions” by Richter & Frei The authors describe the nursing care of 17 Long COVID patients who were “severely physically and mentally disabled”. Article here Thread here .................. S4ME social media: Facebook, Twitter and YouTube
Week beginning 19th September 2022 News, articles, advocacy The World Health Organization (WHO) published a document called ‘Clinical management of COVID-19 patients: living guideline’ in which there is now a chapter on Long Covid. Based on the NICE guideline on ME/CFS, it recommends pacing for patients who have post-exertional symptom exacerbation (PESE). Article here Thread here UK Government "INFORMATION FOR STAKEHOLDERS Work underway to support the development of a Delivery Plan on ME/CFS" A brief summary of 'the meetings held to date to develop proposed content for a draft cross-government Delivery Plan on ME/CFS'. Groups focusing on research, attitudes and education, and living with ME/CFS have discussed terms of reference and set up subgroups and workshops. Thread with link to document here USA - #MEAction and the Mayo Clinic won a grant from the Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS. Article here Thread here Germany Carmen Scheibenbogen will receive the prestigious Order of Merit of the Federal Republic of Germany for her pioneer work on ME/CFS and Long Covid. Announcement here Thread here Scotland - Daily Record "£6m needed to tackle ME crisis as patients demand action over increasing long covid fears" 'A demonstration is being planned outside the Scottish Parliament amid calls to ring-fence £6million a year to treat ME patients.' Article here Thread here Denmark The newspaper B.T. has had several articles about ME lately. This article raises critical questions to the Danish Health Authority on how they can define ME as a functional disorder, treat it with graded exercise and still claim to be based on current knowledge. Article here Thread here USA - The #MillionsMissing 2022 protest on September 19 in front of the White House was mentioned by New York Times, The Hill, MedPage Today, NPR, and several more news outlets. Article here Thread here The BMJ How "long covid" is shedding light on postviral syndromes On how long covid shouldn't be a surprise, that it is receiving a response from the medical community and the usefulness of knowledge from the ME/CFS field. Article here Thread here TIME Long Covid Experts and Advocates Say the Government Is Ignoring 'the Greatest Mass-disabling Event in Human History' Includes a mention of the #MEAction protest outside the White House. Patient advocate Hannah Davis says it looks as though Long Covid is being hidden intentionally and David Putrino says we are lacking something similar of Operation Warp Speed for Long Covid. Article here Thread here TIME Why You Should Rest - a Lot - If You Have COVID-19 On rest as symptom management. Jamie Seltzer from #MEAction says gradually increased exercise has been shown to be harmful to ME patients and provides advice on pacing. Article here Thread here Teen Vogue What Long COVID Is Like For These 14 People Founder of Body Politic, Fiona Lowenstein, provides a short presentation of Long Covid where similarities to ME/CFS and dysautonomia are mentioned. She then presents 14 short stories from young people and their experiences of suffering from Long Covid. One of them, Ruth, says: “I didn’t know one could become sick after a viral infection, I feel robbed of knowledge.” Article here Thread here ............. Research news and commentary Netherlands The Dutch Organisation for Health Research and Development (ZonMw) provides an update on the ME/CFS research program. In September, the sounding board group and the program committee of the ME/CFS research program will meet to examine the quality and relevance of the applications received. Article here Thread here UK DecodeME "DecodeME participation and criteria for the DNA stage" Patient recruitment is open. 'If you have completed the DecodeME questionnaire but have not been asked to provide a DNA sample it is not because we are questioning if you have ME/CFS.' The article explains that strict criteria for selection for the DNA part of the study have to be used, but cannot be revealed until after the study so as not to bias the data. Article here Thread here UK Genetics Symposium ME Research UK have published their first of two reports on this symposium held recently at Edinburgh University. The report focuses on a talk by Prof Marte Viken about her team's recently published research on a genome wide association study of ME/CFS. Article here Thread here Thread on the genetic research paper here International Journal of Environmental Research and Public Health This journal is organizing a special issue on "Bias in Health Care Service Experienced by People with Long COVID or Chronic Illness: Lessons for the Public Health and Medical Community.” The collection of articles aims to encourage discussion around how to recognize and reduce bias in health care. Article here Thread here The IACFS/ME organization has created "2022 Conference Summaries" web page with links to comments made on their 2022 IACFS/ME Conference. There are links to MedScape, HealthRising, Patient-Led Research Collaborative, ME Research UK, and our forum, Science for ME. Article here Thread here Trial By Error Brain Publishes Letter About Flawed Study from NYU on ‘Psychogenic POTS’ The journal Brain has published a letter signed by David Tuller and 8 other academics and clinicians explaining the flawed reasoning of a paper that claimed POTS to be psychogenic despite their own evidence not supporting that hypothesis. Letter here (paywalled) Copy of letter here Thread here Quadram Institute The highs and lows of a Phd in ME research Katahrine Seton tells about doing her PhD on ME and challenges as having to collect samples at participant's homes as well as suffering from ME herself. She now wants to pursue a postdoctoral position in ME research and hopes to have her own research group one day. Article here Thread here .............. Research PLOS One Activity monitoring and patient-reported outcome measures in ME/CFS patients” by Rekeland et al. In this Norwegian study, the authors tested the use of activity monitors in 27 patients with mild to severe ME/CFS. Article here Thread here Science Advances - Immunology "Systemic antibody responses against human microbiota flagellins are over-represented in chronic fatigue syndrome patients" Vogl et al Using samples from the UK ME/CFS biobank, the Austrian researchers '...profiled antibody responses of patients with severe ME/CFS and healthy controls against microbiota and viral antigens... Patients with severe ME/CFS exhibited distinct serum antibody epitope repertoires against flagelins of Lachnospiraceae bacteria.' The authors point to an overlap with findings from Crohn's disease. Paper here Thread here Hormone and Metabolic Research "Long Covid and Apheresis – Where are we Standing?" Steenblock et al Concludes: 'Despite promising experiences with several forms of apheresis in the treatment of Long Covid, either alone or in combination with other therapies, confirmatory data on its efficacy from large well- designed interventional studies is still lacking.' Article here Thread here Cardiovascular Diabetology "Proteomics of fibrin amyloid microclots in long COVID/post-acute sequelae of COVID-19 (PASC) shows many entrapped pro-inflammatory molecules that may also contribute to a failed fibrinolytic system" by Pretorius et al. Paper here Thread here Preprint "Severe fatigue as symptom of long COVID is characterized by increased expression of inflammatory genes in monocytes, increased serum pro-inflammatory cytokines, and increased CD8+ T-lymphocytes. A putative dysregulation of the immune-brain axis, the coagulation process, and auto-inflammation to explain the diversity of long COVID symptoms" by Berentschot et al. Article on this research in Medical NEWS: "Why fatigue from long COVID goes beyond simply feeling tired" by Dr. Chinta Sidharthan Preprint here Article here Thread here MedRxiv preprint "Post-COVID-19 syndrome: retinal microcirculation as a potential marker for chronic fatigue" by Schlick et al 173 patients with Post Covid Syndrome (PCS) and 28 controls. Found significant difference between PCS and controls in retinal microcirculation. The test also differentiated PCS patients with subjective chronic fatigue measured with the Bell score. The authors suggest this provides a potential biomarker for chronic fatigue in PCS. Preprint here Thread here Research Square “Prevalence and predictors of long COVID among non-hospitalised adolescents and young adults: a prospective controlled cohort study” by Wyller et al. In this preprint, the Norwegian research team of Vegard Wyller reports that approximately half of the adolescents met the WHO definition for Long COVID, whether they were SARS-CoV-2 positive or not. Article here Thread here BMJ Long covid—an update for primary care by Trisha Greenhalgh In this opinion piece, Greenhalgh argues that many patients with Long Covid can be supported effectively in primary care by a GP with a special interest who offers supportive, holistic care. Article here Thread here .............. S4ME social media: Facebook, Twitter and YouTube
Week beginning 26th September 2022 News, articles, advocacy The Atlantic Long COVID Has Forced a Reckoning for One of Medicine's Most Neglected Diseases Feature article by Ed Yong on ME as a medical crisis due to stigmatisation, lack of knowledge and few specialists. "While ME/CFS patients, their caregivers, and the few doctors who treat them have spent years fighting for medical legitimacy, the coronavirus pandemic has now forced the issue". Article here Thread here Reporting on long COVID and other complex chronic illness Excellent Twitter thread by science journalist Ed Yong on having a patient-centred approach when reporting on complex illnesses, accommodating for people with post-exertional malaise, and more. "No one owes you their story; sharing one is an incredibly vulnerable thing to do, and must be honoured". Twitter thread here Thread here Ed Yong reports on Twitter that after writing 55 in-depth articles on the pandemic, he is taking a break: 'Some personal news: I’m taking a 6-month sabbatical, starting now. These past 3 years have been the most professionally meaningful of my life, but they’ve also deeply broken me.' Twitter here Thread here The Atlantic In his final piece before going on sabbatical Yong reflects on the pandemic and the failures of the US response: "The Pandemic’s Legacy Is Already Clear - All of this will happen again." Article here Thread here Sweden Opinion piece by journalist Agnes Arpi about broken promises to ME patients from the region Västerbotten. Article here Thread here UK - Maeve Boothby O'Neill inquest A pre inquest hearing this week heard from Maeve's mother Sarah Boothby about the lack of appropriate medical care for Maeve who had very severe ME/CFS and tragically passed away a year ago. The full inquest is expected to be held next March. Devon Live: 'Exeter mum's heartbreak as daughter, 27, loses severe ME battle' The Times: "Chronic Fatigue Syndrome patient told 'You're making it up'" by Maeve's father, Times journalist Sean O'Neill. Devon Live article here Times article here Thread here (members only) UK Action for ME AGM Annual general meeting video and report are available. Topics covered include AfME involvement in research with DecodeME and Breakthrough-ME, expansion of their Healthcare services, and appointment of new trustees. Video here (46 minutes) Report here Thread here Scotland #MEAction held a Millions Missing protest outside the Scottish Parliament. A report in Stroud news, headed "Belle and Sebastian singer: Living with ME makes me feel like a ‘non-person’" interviewed Stuart Murdoch. Some MSP's came out to talk to protesters. Article here Thread here Journal of The Royal New Zealand College of General Practitioners "‘The Lightning Process’ and chronic fatigue syndrome/myalgic encephalomyelitis" by Rosamund Vallings Vallings raises concern '...that recent GP educational events have promoted ‘The Lightning Process’...' for CFS/ME. She notes some recent biomedical findings by Australian and New Zealand researchers and warns against LP, citing UK ME Association and NICE warnings against its use. Article here Thread here Book review Forum member Trish has posted an Amazon review spelling out some of the many problems with a new book, 'Living with ME and Chronic Fatigue Syndrome', by Coakley and Knops, published as part of the Penguin Life Experts series. Review here Thread here Australia 2022 Parliamentary inquiry into Long Covid and repeated covid infections - submission deadline 18 Nov 2022 The terms of reference require responses to specific questions covering experiences of patients and of healthcare providers, research, and impacts on community and economic factors and the health system. Details here Thread here Psychology Today "Why So Many Doctors Doubt Patients With Long Covid" Psychiatrist and psychotherapist Yochai Re'em on stigma and mistreatment of Long Covid patients from health care providers. He believes the reason behind poor care is the way "somatic symptoms disorders" have been taught. Article here Thread here Cardiovascular Endocrinology & Metabolism "Response to the report published by the UK House of Commons All-Party Parliamentary Group on CFS/ME: implications for cardiometabolic risk" by Low et al. The authors of this letter defend the used of a biopsychosocial model for treating ME/CFS, concluding with 'Any intervention that can result in greater activity levels is likely to reduce cardiovascular risk.' Letter here Thread here ............. Coming events UK - Sheffield ME and Fibromyalgia Group are hosting Chris Ponting who will talk about DecodeME, prior to their AGM, Oct 6, 2022, 2:00 PM Details and register here Thread here ........... Crowdfunding Trial By Error Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms" New round of crowdfunding for David Tuller so his important work can continue. The aim is to raise $64,000 which will secure his position as senior fellow in public health and journalism at the Center for Global Health at The University of California, Berkeley from January to June 2023. Crowdfunding here Thread here ............ Research news and commentary UK DecodeME "DecodeME Questionnaire – Shining a light on the ME/CFS community" A short article about the value of the questionnaire part of the research, with encourgement to spread the word, and some data so far on participants' location, age group and severity. Participate here Article here Thread here USA The NIH RECOVER Initiative project has released a Post-Infection Illness Expert List. From the document intro: "Investigators and clinicians with research expertise and clinical experience with post-infection syndromes, ME/CFS, and other illnesses are contributing within the RECOVER Initiative and participating in the Initiative’s oversight committees and working groups." Document here Thread here The Scientist Multiple Possible Causes of Long COVID Come into Focus On current hypotheses behind Long Covid. Includes an interview with Avindra Nath from NIH who says there could be multiple mechanisms ongoing and that "long COVID shares symptoms with some suspected autoimmune diseases, mainly ME/CFS.." Article here Thread here USA - ScienceDirect has published a commentary on different forms of disability discrimination during the pandemic. The full title is: 'Ever-changing but always constant: “Waves” of disability discrimination during the COVID-19 pandemic in the United States' Paper here Thread here Psychology Today Will Covid Brain Fog Increase Risks for Alzheimer's Disease? Professor of Psychology Ira Hyman says viral infections have been considered as possible causes for brain and cognitive declines, and that a new analysis found an increased risk of developing Alzheimer in the year following Covid among peopler older than 65. He concludes this is another reason to avoid Covid. Article here Thread here .............. Research Preprint "Commentary: Graded Exercise Therapy and Cognitive Behaviour Therapy Do Not Improve Employment Outcomes in ME/CFS" by Tuller and Vink. Starts with Wessely's 1989 article that proposed his CFS model of faulty beliefs and deconditioning, and the linking of welfare benefits to undergoing behavioural interventions. Sharpe is quoted claiming social factors including welfare benefits prevent recovery. 'Both State and private insurers pay people to remain ill.' Tuller and Vink analyse research data from PACE and other studies to show that CBT and GET do not lead to increased employment. They conclude: 'In consequence, they should no longer be recommended to ME/CFS patients as a strategy for achieving occupational rehabilitation and related outcomes.' Trial by Error article here Preprint here Thread here JAMA Network Open “Association of SARS-CoV-2 Seropositivity With Myalgic Encephalomyelitis and/or Chronic Fatigue Syndrome Among Children and Adolescents in Germany” by Sorg et al. This German study failed to find a strong relationship between SARS-CoV-2 IgG antibodies and ME/CFS symptoms in 634 pediatric hospital patients. Forum members have questioned their methodology as 30% of the control group also experienced ME/CFS symptoms. Article here Thread here Journal of Translational Medicine “Long-term neuromuscular consequences of SARS-Cov-2 and their similarities with myalgic encephalomyelitis/chronic fatigue syndrome: results of the retrospective CoLGEM study” by Retornaz et al. This French study compared 59 patients with long-COVID and 55 ME/CFS patients with a history of severe infection before the coronapandemic. The frequency of fatigue, myalgia, sleep problems, cognitive dysfunction, and post-exertional malaise was similar in the two groups. Article here Thread here Frontiers in Immunology “Dysregulated autoantibodies targeting vaso- and immunoregulatory receptors in Post COVID Syndrome correlate with symptom severity” by Sotzny et al. This German study by the research team of Carmen Scheibenbogen found lower natural regulatory autoantibody (AAB) levels in patients with Long Covid (half of which had ME/CFS) compared to controls. Article here Thread here The Lancet “Plasma proteomic signature predicts who will get persistent symptoms following SARS-CoV-2 infection” by Captur et al. The authors found that non-severe SARS-CoV-2 infection perturbs the plasma proteome for at least 6 weeks. They speculate that this may help to identify patients who are more likely to suffer from persistent symptoms related to SARS-CoV-2 infection. Article here Thread here Fatigue: Biomedicine, Health and Behavior "Research priorities for ME/CFS: the results of a James Lind alliance priority setting exercise" by Tyson et al. The researchers described the process and analysed data from the priority setting partnership last year in which over 1500 people with ME, carers and clinicians voted on their top ten priorities for ME/CFS research. Paper here Thread here Health Expectations "Creative Long Covid: A qualitative exploration of the experience of Long Covid through the medium of creative narratives" by Marie Pearson et al An attempt to gain insight of Long Covid based on creative submissions from 28 Long Covid sufferers. "In relation to clinical practice, the results suggest that adjustment reaction and loss of sense of self could be added as common symptoms". Paper here Thread here BMJ "Early experiences of the Your COVID Recovery® digital programme for individuals with long COVID" by Lloyd-Evans et al Early observational data concerning an online rehabilitation programme described as containing "interactive and downloadable resources on managing symptoms such as cough, fatigue, fear and anxiety and topics such as eating well, getting moving again and sleeping well". The results are based on questionnaires and pulmonary disease assessment test to 110 participants who have completed the program. The researchers thinks the results are promising. Study here Thread here .............. S4ME social media: Facebook, Twitter and YouTube
