This thread has a Science for ME 'News in Brief' post for each week in March 2023 by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.
Week beginning 27th February 2023 Post 1 of 2 News, articles and advocacy UK Parliament The AGM of the ME/CFS All Party Parliamentary Group will be on 21st March. "... the AGM will include a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts". There will also be a discussion of support for those with severe ME. Notice | Thread Scotland The Scottish Good Practice Statement on ME-CFS. A partially updated version was published by the Scottish Government on 28th February, to include some of the recommendations from the 2021 NICE guideline. However it still includes outdated recommendations from the 2010 version as well as updates, leading to contradictions. Document | Thread Australia Parliamentary inquiry into Long Covid and repeated covid infections The transcript for the recent Canberra public hearing for the Inquiry has been released, including good statements from ME/CFS patient advocates Michelle O'Brien and Penelope McMillan, and some concerning ones from clinicians. Transcript | Thread New Scientist We're starting to understand how viruses trigger chronic conditions Paywalled article on long Covid as a spotlight on the role viral infections have in conditions as CFS and fibromyalgia. The article also was discussed in their latest podcast episode. Article l Podcast l Thread Europe The new group NotRecovered is organising an online protest, calling for more research on Long Covid in Europe. Patients with Long Covid and related conditions such as ME/CFS are asked to participate in the online protest by submitting a picture. Article here Thread here Trial by Error by David Tuller After Maeve Boothby O´Neill's Death, More Concerns About Severe ME Patients at NHS Hospitals About challenges concerning providing nutrition to very severe ME sufferers who are not able to eat by themselves. Hospital's tube-feeding policy is to provide the treatment at an angle of 30 degrees to avoid choking, but this doesn't take POTS and/or PEM into account. Tuller presents and shares press release, petition and media coverage of two ongoing cases in UK. Article l Thread One of the cases Tuller refers to is about 25 year old Alice Barrett who suffers from very severe ME and is in need of tube feeding. The BBC has covered Alice's family's struggle for suitable treatment. BBC Article l BBC Article Book A Physiotherapist's Guide to Understanding and Managing ME/CFS. Advance notice of this text book by the 4 UK physiotherapists who run Physios for ME. Publication date 21st August 2023. Website | Pubisher | Thread Sweden Sveriges Radio has a short segment about a new book on ME written by ME sufferer Johanna Sjöström. The book tells the author's story and is aimed at patients, carers and health care workers. Article l Thread #MEAction, together with Patient-Led Research Collaborative, have published a new Clinician's Pacing Guide. Guide l Thread ................ Research news and commentary Australia The University of the Sunshine Coast Thompson Institute is seeking participants for a brain MRI scan study. "The study is the first to investigate brain function in ME/CFS in terms of energy supplies and chemical messengers. It is also the first significantly sized study to attempt to develop a diagnostic tool by combined advanced MRI and machine learning." Participants - healthy inactive, fatigued, ME/CFS, fibromyalgia, and Long Covid. Details | Thread UK DecodeME This is aiming to be the largest Genome wide association study (GWAS) and questionnaire study of ME/CFS. Many more participants are needed. The website has ways to spread the word, including one click sharing to Twitter, Facebook and Whatsapp, suggested messages and a poster, flyer, information sheet and printable leaflet. Sharing | Take part | Thread Prescriber Realising the potential of faecal microbiota transplant - Angela Dowden The article describes the planned study at Quadram Institute, UK. "Professor Simon Carding, who will lead the study, supported by the UK Invest in ME Research Charity, explains: “Considering that a significant proportion of ME/CFS patients date the onset of their symptoms to a GI illness, with abdominal pain, diarrhoea and sometimes vomiting, FMT may be helpful in these patients." Article | Thread The Comeback Study A fecal microbiota transplant study in Norway has posted a Facebook update saying they have now completed the clinical part of the study and will be moving on to analysis. Facebook | Thread USA NIH (National Institutes of Health) Dr. Paul Hwang of the NIH's National Heart, Lung, and Blood Institute, is giving a talk on March 27 entitled "ER [endoplasmic reticulum] Stress Induction by WASF3 May Underlie CFS". It is at a Keystone Symposium, which is closed to the public. Thread Norway A research news site has written about a recent paper on severe ME, based on a survey from the Norwegian ME Association. The paper concluded that help to this patient group is "grossly inadequate". One of the paper's authors, Trude Schei, says its possible to create good care for severe ME sufferers, but it requires that municipalities and the health care system are able to listen and to approach this in new ways. Article l Thread Norway In a debate programme this week, Professor in psychology Reme objected to FOI requests concerning a current disputed research project on the alternative treatment Lightning Process. Patient advocate Steinkopf says FOI requests have unravelled a number of problematic aspects with the study and Professor in law, Høgberg, says the study protocol in itself doesn't provide sufficient information. Thread with transcription ................. See next post for the section on research.
Week beginning 27th February 2023 Part 2 of 2 Research Biomedical ME/CFS research Frontiers in Neuroscience Brainstem volume changes in ME/CFS and long COVID patients - Thapaliya, Barnden et al This small MRI study found some named regions of the brainstem were significantly larger in both patient groups than in healthy controls. Some correlations were found with pain or breathing symptoms. MERUK which funded the study have written an article about it. "Interestingly, there were no differences in these measurements between ME/CFS and long COVID patients." Paper | MERUK Article | Thread IJ Molecular Sciences Skin Temperature Circadian Rhythms and Dysautonomia in ME/CFS: The Role of Endothelin-1 in the Vascular Tone Dysregulation - Cambras et al 67 female ME/CFS patients, 48 controls. Measures over a week and during and orthostatic test showed some significant between group differences. "This suggests that ME/CFS patients exhibited modifications in circadian rhythm and hemodynamic measures, which are associated with endothelial biomarkers (ET-1 and VCAM-1). Future investigation in this area is needed to assess dysautonomia and vascular tone abnormalities, which may provide potential therapeutic targets for ME/CFS." Paper | Thread Biomedicines Autoantibody Correlation Signatures in Fibromyalgia and ME/CFS: Association with Symptom Severity - Ryabkova et al In this Russian pilot study with 11 each of ME/CFS patients with and without FM, and controls, some differences were found on autoantibody assays which correlated with symptoms. Paper | Thread Other ME/CFS and related research Journal of Taibah University Medical Sciences Health system support among patients with ME/CFS in Switzerland - Tschopp et al. The authors conducted a survey of 169 ME/CFS patients in Switzerland. Most (90.5%) were told at least once that their symptoms were psychosomatic. Insufficient knowledge of ME/CFS among health professionals led 13.5% of the patients to travel abroad to seek a diagnosis. Paper | Thread Journal of Critical Care Non-pharmacological interventions for self-management of fatigue in adults: An umbrella review of potential interventions to support patients recovering from critical illness - Brown et al. The authors conducted a review of fatigue after a critical illness. They found 10 reviews that met their inclusion criteria: 8 on cancer, 1 on Systemic Lupus Erythematosus, and 1 on post-viral fatigue. Paper | Thread Frontiers in Psychology The Conners Continuous Performance Test CPT3™: Is it a reliable marker to predict neurocognitive dysfunction in Myalgic encephalomyelitis/chronic fatigue syndrome? - Fernández-Quirós et al. The authors report that ME/CFS patients had abnormal variability and hit reaction time, both measures of response speed, compared to healthy controls on the CPT3 test. Paper | Thread Lancet ME/CFS and fibromyalgia: PR3-versus MPO-ANCA-associated vasculitis, an exploratory cross-sectional study - van Eeden et al In this questionnaire based study of 52 ANCA-vasculitis patients the authors conclude: " A large proportion of AAV patients suffer from debilitating fatigue consequential enough to meet the diagnostic criteria for ME/CFS." Paper | Thread Neuroscience and Behavioral Physiology Stress, Asthenia, and Cognitive Disorders - Vasenina et al. This paper was translated from Russian and describes the similarity between asthenia, depression, and chronic fatigue syndrome and their relation to stress. Paper here Thread here Long Covid research Clinical Epigenetics Defining post-acute COVID-19 syndrome (PACS) by an epigenetic biosignature in peripheral blood mononuclear cells — Nikesjö et al. “Several of the pathways that we found epigenetically modulated in PACS subjects, including Angiotensin II receptor, muscarinic receptors and histamine signalling pathways, are relevant for the symptomatic picture of PACS.” Article | Thread Molecular Medicine Organ and cell-specific biomarkers of Long-COVID identified with targeted proteomics and machine learning — Patel et al. “A case–control study comparing the expression of 2925 unique blood proteins in Long-COVID outpatients versus COVID-19 inpatients and healthy control subjects.” “Proteomic analysis of plasma from Long-COVID patients identified 119 highly relevant proteins and two optimal models with nine and five proteins, respectively. The identified proteins reflected widespread organ and cell type expression.” Article | Thread JAMA Health Forum One-Year Adverse Outcomes Among US Adults With Post–COVID-19 Condition vs Those Without COVID-19 in a Large Commercial Insurance Database — Andrea DeVries et al. “This study provides new insights into risks for adverse outcomes in individuals with PCC after accounting for higher levels of pre–COVID-19 disease burden. Based on published literature, the most common symptoms experienced by individuals with PCC include fatigue, headache, and attention disorder. While these symptoms are concerning, results from this study also indicated a statistically significant increased risk for a range of cardiovascular conditions as well as mortality.” Article | Thread eClinicalMedicine Structural brain changes in patients with post-COVID fatigue: a prospective observational study — Josephine Heine et al. “Using MRI-based volumetry and diffusion imaging, we show that the persistent fatigue symptoms in patients with post-COVID syndrome have a distinct neuronal substrate and are associated with fatigue levels, daytime sleepiness, and neuropsychiatric symptoms.” Article | Thread Brain, behavior, & immunity - health Neurocognitive and psychiatric symptoms following infection with COVID-19: Evidence from laboratory and population studies — Hall PA et al. “Converging findings from laboratory and population survey data support the conclusion that symptomatic COVID-19 infection is associated with task-related, functional imaging and self-reported indices of cognitive dysfunction as well as psychiatric symptoms. In some cases, these findings appear to be more amplified among women than men, and among older women than younger.” Article | Thread Journal of Personalized Medicine Cystatin-c May Indicate Subclinical Renal Involvement, While Orosomucoid Is Associated with Fatigue in Patients with Long-COVID Syndrome — Zavori et al. “The serum [Orosomucoid] level measured at the baseline visit proved to be an independent predictor of the occurrence of fatigue and showed a close correlation with its severity in our cohort.” Article | Thread .................. S4ME social media: Facebook, Twitter, Mastodon and YouTube
Week beginning 6th March 2023 News, articles and advocacy USA - Solve ME posted an update on the CDC's attempt to create a set of clinical guidelines for ME/CFS. "Unfortunately, the CDC has determined that there is not enough evidence to formulate the recommended guidelines, and they will instead publish a literature review." Article | Thread Europe On 9 March The special committee on the COVID-19 pandemic organises on Long Covid. Prof. Carmen Scheibenbogen spoke on ME/CFS following COVID-19 and various members of the European Parliament asked about the relationship between ME/CFS and Long Covid. Video | Thread UK BACME (British Association of Clinicians in ME/CFS) holds a database of NHS specialist ME/CFS services. They have launched their 2023 National Services Survey looking at all aspects of service provision. It was "developed with support from the DHSC delivery plan team and their data analysts and we have also sought feedback from several of the large ME/CFS patient charities to help further our collaborative working" and "will be shared with the DHSC and the All Party Parliamentary Group for ME". Thread #MEAction's Director of Science and Medical Outreach, Jamie Seltzer in conversation with David Tuller about her work, the debate around "functional" disorders and more. Interview l Thread #MEAction Chronically Complex podcast series is available. The latest episode is an interview with Cynthia Adinig, a marketing specialist turned Long COVID advocate. "Cynthia discusses her journey with Long COVID, her life in advocacy, and the work she’s doing with BIPOC Equity Agency." Podcasts | Thread UK - Parliamentary Survey A debate in Parliament is scheduled on two petitions calling for increased financial support for disabled people. Responses are invited by 31st March. Survey | Thread CNN How to help friends and employees living with long Covid Good article on how people can better understand long Covid and be of help to sufferers. Has quotes from among others journalist, ME/CFS and Long Covid sufferer Ryan Prior who says "this is the largest number of newly disabled people in a generation". Article l Thread Scottish Legal blog David J Black: Cherchez la shrink About Simon Wessely's role in the dominance of the psychosomatic view of ME/CFS, and his influence on research and treatment in the UK through a range of influential positions, including his recent appointment to the board of NHS England. Article | Thread ................. Resources USA - #MEAction has three Pacing and Management Guides available. One of our members posted a reminder that there is a Pediatric Pacing and Management Guide, developed in conjunction with Long COVID Families, that is "oriented toward caregivers of kids and teens." Website | Thread .................. Research news and commentary Canada - The Canadian Government announced they are investing $20 million into research on Post-Covid Conditions (PCC) and $9 million to develop clinical practice guidelines for PCC. Article | Thread UK DecodeME More UK participants with an ME/CFS diagnosis are needed for this research which involves a questionnaire and a genome wide association study(GWAS). Sharing | Take part | Thread The Lancet Long COVID: 3 years in This editorial states: “long COVID is often easily dismissed as a psychosomatic condition. Given what we now know about the effects of long COVID and its biological basis, it must be taken seriously.” Paper | Thread Nina E. Steinkopf, patient advocate, has written an article about a paper on CBT as CFS treatment published in Frontier. "Despite evidence of a financial conflict of interest; after nearly two years the journal Frontier has decided to believe in the authors and publish a worthless corrigendum". Article l Thread ................. Research ME/CFS research University of Otago Thesis: A neuroinflammatory paradigm can explain ME/CFS and Post-COVID-19 Fatigue Syndrome - Angus Mackay The thesis abstract suggests a hypothesis for the cause of ME/CFS. "A dysfunctional hypothalamic paraventricular nucleus (PVN), a potentially vulnerable site, within the brains of genetically susceptible people, which functions normally as a stress-control integrator, is proposed to be at the core of ME/CFS (and PCFS) aetiology and pathophysiology." Thesis | Thread IJ Molecular Sciences Towards a Better Understanding of the Complexities of ME/CFS and Long COVID - Tate et al An overview of some findings from biomedical research; an attempt to elucidate predisposing factors; and some unevidenced claims about psychological and activity based treatments. Article | Thread Marquette University USA Thesis: A Package Of Smartphone and Sensor-Based Objective Measurement Tools For Physical and Social Exertional Activities for Patients With Illness-limiting Capacities - Arafat Mahmood Uses insoles, wrist worn sensor and smartphone data such as sound recording to help people with energy limiting diseases include ME/CFS and Long Covid. "This work presents a practical package for patients with limited functional capacities due to illness. We describe the design and development of a smartphone application that collects the data from the sensor device and microphone, sends them to a server for machine learning calculation, and provides a comprehensive summary by objectively measuring the activities." Thesis | Thread Sleep Medicine Reviews Objective sleep measures in chronic fatigue syndrome patients: A systematic review and meta-analysis - Mohamed et al "The meta-analysis results demonstrate that sleep is altered in ME/CFS, with changes seeming to differ between adolescent and adults, and suggesting sympathetic and parasympathetic nervous system alterations in ME/CFS." Review | Thread Brain Nerve ME/CFS: Diagnostic and Therapeutic Approach and Biological Research - Sato Article in Japanese. From the abstract: "Patients experience various types of chronic pain; however, post-exertional malaise is the most significant feature, which requires pacing. In this article, I summarize the current diagnostic and therapeutic approaches and describe recent biological research in this domain." Abstract | Thread Journal of Disability Policy Studies Using Data Mining and Time Series to Investigate ME and CFS Naming Preferences - Bhatia et al. The authors mined the Google Trends database and found that while “Chronic Fatigue Syndrome” remains the predominant search category its interest index declined at a rate of 2.77 per month during the 15-year study period while the interest index of “ME/CFS” terms increased at a rate of 3.20 per month. Paper | Thread Long Covid Research Nature Communications Long-term gastrointestinal outcomes of COVID-19 — Xu et al. “We show that beyond the first 30 days of infection, people with COVID-19 exhibited increased risks and 1-year burdens of incident gastrointestinal disorders spanning several disease categories including motility disorders, acid related disorders (dyspepsia, gastroesophageal reflux disease, peptic ulcer disease), functional intestinal disorders, acute pancreatitis, hepatic and biliary disease.“ Article | Thread Viruses Elevated SARS-CoV-2-Specific Antibody Levels in Patients with Post-COVID Syndrome — Hackenbruch et al. “Together, this study provides further insights into the association of SARS-CoV-2 specific humoral immune response with post-COVID syndrome: increased SARS-CoV-2 specific antibody levels were observed early after infection in convalescents with more and more severe post-infectious symptoms approximately 6 months after infection, in particular in individuals suffering from neuro-psychiatric symptoms.” Article | Thread Preprint Immunometabolic rewiring in long COVID patients with chronic headache — Suan-Sin Foo et al. “Remarkably, numerous lipid metabolites, including sphingomyelins, plasmalogen, phospholipids, sphingolipids, and cholesterol, were elevated exclusively in the plasmas of long COVID patients throughout the progression of chronic headache.” Article | Thread ................... Coming Events #MEAction - ME Caregiver Support Call March 18, 12:30 pm Pacific Time / 3:30 pm Eastern Time Please join us the third Saturday of each month for the ME Caregiver Support Call. Announcement | Thread Bateman Horne Center - Free Online Support Groups Advance Registration Required Topic: Aging with Chronic Illness Tuesday, March 21, 1 to 2 PM Mountain Time Announcement | Thread Massachusetts ME/CFS and FM Sunday Conversation. "The Broken Mishkan: Performance and Community Conversation with Sara Nesson" Sunday, March 19, 2023, 4 p.m. EST. "The Broken Mishkan is a 23-minute theatrical work that follows author Sara Nesson’s compelling journey toward wholeness after being diagnosed with ME/CFS." Register | Thread ................... S4ME social media: Facebook, Twitter, Mastodon and YouTube
Week beginning 13th March 2023 News, articles and advocacy Sweden On 8 March, members of the Swedish Parliament held a seminar on ME/CFS and the need for more research and specialist centers. Among the speakers were Jonas Bergquist and Brian Hughes. Article here Thread here Europe The European ME Coalition (EMEC) has written a summary of the COVI workshop on Long Covid in the European Parliament on 9 March. Various invited experts and Members of Parliament highlighted a link between ME/CFS and Long Covid. Article here Thread here UK Parliament The AGM of the ME/CFS All Party Parliamentary Group planned for this week has been postponed. Thread Wales, UK The Welsh government has announced a "funding boost to open long COVID services up to people with long term conditions". This expands the community based services for Long Covid to "other long term conditions whose rehabilitation and recovery are similar" including ME/CFS. Announcement | Thread Canadian Medical Association Journal "Lessons for Long COVID from Myalgic Encephalomyelitis (ME) care" This letter explains that Long Covid patients often meet ME diagnostic criteria, warns about Post-exertional malaise (PEM), and recommends pacing. Letter | Thread USA - CNN Had a segment on Long Covid on TV described as a mass disabling event and mentions overlaps with ME/CFS, POTS and PEM. Thread with clip and full segment Australia - ABC News Short segment on Long Covid and CFS with mention of a clinical study on the drug Naltrexone about to take place in Australia. Thread with clip Canada - The Long Covid Web group, announced on March 9, now has a website. The group's goal is to "establish a national network to study Long Covid, unlocking new treatments and improving care for Canadians." Website | Tweet | Thread ................. Research news, reviews and commentary UK DecodeME This is aiming to be the largest Genome wide association study (GWAS) and questionnaire study of ME/CFS. Many more participants in the UK with an ME/CFS diagnosis are needed. Participation is online and by post. Sharing | Take part | Thread Decode Long Covid Professor Chris Ponting who is leading the DecodeME study on ME/CFS reports on Twitter that the proposal for a £3million Decode Long Covid study has not been funded. Tweet | Thread Cochrane review of exercise therapy for CFS A new review is supposed to be in progress. An IAG (independent advisory group), led by Hilda Bastian, was appointed in May 2021 and was tasked with advising the review authors and posting monthly updates on progress on the Cochrane website. The review author group was tasked initially with writing a protocol for the review and opening it to public consultation. According to the update in June 2021 the author group had started work on writing the protocol. The most recent of the promised monthly updates was posted in August 2021. Since then several attempts have been made to find out what is happening, including letters to Hilda Bastian and to senior people at Cochrane. This week Cochrane's head of communications has replied "The update is currently underway and we are hoping to publish the protocol for consultation in the coming months." Meanwhile, the outdated review is still up on the Cochrane website. Thread with summary of the process to date | Discussion thread Trial by Error by David Tuller GET/CBT Ideologues Revive 1991 Oxford Criteria as Core Definition for Long Covid Research About The Collaborative on Fatigue Following Infection (COFFI) which has a psychosomatic approach to ME. In a paper from last June on Long Covid they refer to an old case definition for CFS from 1991. Tuller says that by doing this they have resurrected and rebranded the Oxford criteria in what "appears to be a sly way of ignoring and seeking to maneuver around the fact that this approach has already been rejected in the ME/CFS domain". Article l Thread Trial on LP Opinion piece by senior lecturer and previous science journalist Unni Eikeseth concerning an ongoing disputed study in Norway on the alternative treatment Lightning Process (LP). Eikeseth misses critical questions from the media about this study, and asks why that task seems to have been left to patients. Opinion piece (Norwegian) l Thread The LP researchers recently claimed in the media to have received a "storm" of FOI requests concerning their study, so much that it inhibits them from performing their job. It turns out the actual number of requests has been modest, as patient advocate Nina E. Steinkopf documents in her latest article. Article l Thread Steinkopf has also looked into what the real figures are of how many ME patients have had the alternative treatment LP in Norway, and how many recovered. The number of success stories is far from impressive. Article l Thread .................. Resources UK: Action for ME: Media Guidelines for reporting on M.E. "We want to work with journalists to ensure reporting on M.E. is accurate and sensitive to people with M.E. Journalists can utilise these guidelines in forthcoming stories and contact media@actionforme.org.uk for comment from Action for M.E." There are mixed responses from forum members to the 6 page document. AfME explanation | Guideline | Thread USA - CDC A recording of the Feb. 23 presentation "Evaluating & Supporting Children and Adolescents with Post-COVID Conditions" is now available. Video | Slides | Thread ................. Research ME/CFS research Medicina Recovery from Exercise in Persons with ME/CFS - Moore, Hanson et al 80 ME/CFS and 64 controls did a 2 day cardiopulmonary exercise test. "ME/CFS subjects took an average of about two weeks to recover from a 2-day CPET, whereas sedentary controls needed only two days." Paper | Thread Environmental Analysis Health and Toxicology A 2-day cardiopulmonary exercise test in chronic fatigue syndrome patients who were exposed to humidifier disinfectants - Leem et al Toxic chemicals (HD's) formerly used in dehumidifiers in Korea led to some people suffering CFS symptoms. 29 participated in the study. "Our results confirm previous work that demonstrated abnormal responses to PEM in CFS patients. Therefore, a 2-day CPET is an objective measure to differentiate fatigue conditions in people with CFS symptoms who have been exposed to HDs." Paper | Thread IOS Press Graded exercise therapy and cognitive behavior therapy do not improve employment outcomes in ME/CFS - Tuller & Vink In this commentary, David Tuller and Mark Vink conclude that “GET and CBT–have already been tested sufficiently to reach a conclusive assessment that they do not lead overall to meaningful improvements in work status.” Article here Thread here IOS Press Adults with ME/CFS report surprisingly high rates of youth symptoms: A qualitative analysis of patient blog commentary - Johnson et al. The authors analyzed a poll and comments on the Health Rising forum and found that 43% of adult survey participants reported having developed ME/CFS prior to age 18. Paper here Thread here International Journal of Environmental Research and Public Health Effectiveness of Pain Neuroscience Education in Patients with Chronic Musculoskeletal Pain and Central Sensitization: A Systematic Review - Lepri et al. The authors conducted a systematic review and conclude that ‘pain neuroscience education’ is effective in improving pain, disability, and psychosocial factors in patients with fibromyalgia, chronic low back pain, and CFS. Paper here Thread here Long Covid research Nature Communications Post-covid medical complaints following infection with SARS-CoV-2 Omicron vs Delta variants — Magnusson et al. “Our findings suggest that the acute and sub-acute burden of post-covid complaints on health services is similar for Omicron and Delta. The chronic burden may be lower for Omicron vs Delta when considering musculoskeletal pain, but not when considering other typical post-covid complaints.“ Article | Thread Work My experience with ME/CFS and implications: A personal narrative — Sirotiak “This article describes the experience of a young woman and physical therapist with ME/CFS following COVID-19 infection, as well as potential implications for rehabilitation professionals and those who care for those with this condition.” Article | Thread Frontiers in Neurology Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is common in post-acute sequelae of SARS-CoV-2 infection (PASC): Results from a post-COVID-19 multidisciplinary clinic — Bonilla et al. “Most PASC patients evaluated at our clinic had no comorbid condition and were not hospitalized for acute COVID-19. One-third of patients experienced a severe decline in their functional status. About 43% had the ME/CFS subtype.” Article | Thread European Respiratory Journal Monocyte migration profiles define disease severity in acute COVID-19 and unique features of long COVID — Nicholas A. Scott et al. “Conversely, monocytes from long COVID patients with ongoing fatigue exhibited sustained reduction of the prostaglandin-generating enzyme COX-2 (p<0.01) and CXCR2 expression (p<0.05). These monocyte changes were not present in RSV or flu convalescence.” Article | Thread Work Post-exertional malaise among people with long COVID compared to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — Vernon et al. “Since PEM is not familiar to most people, the PEM questionnaire used in this study first introduced it as “an unusual worsening of symptoms after minimal physical or mental exertion, which can occur or persist 24 hours or more after the exertion” then asks, “Do you have PEM?” All but one Long COVID respondent answered “Yes” to having PEM.” Article | Thread Clinical Infectious Diseases Post-acute sequelae after SARS-CoV-2 infection by viral variant and vaccination status: a multicenter cross-sectional study — Kahlert et al. “Previous infection with pre-Omicron variants was the strongest risk factor for PASC symptoms among our [healthcare workers]. Vaccination prior to Omicron BA.1 infection was not associated with a clear protective effect against PASC symptoms in this population.” Article | Thread Preprint: ResearchGate Altered Tissue Oxygenation in Patients with Post COVID-19 Syndrome — Hendrik Schäfer et al. “This study provides evidence that the rate of tissue oxygen consumption is persistently altered in PCS and that PCS patients show an even slower decline in tissue oxygenation during occlusion than CVD patients.” Article | Thread .................. Coming events USA - National Academies of Sciences, Engineering, and Medicine "Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors" Two day workshop: June 29 - 30 Participants may attend in person (Washington, DC) or virtually. Announcement | Thread IACFS/ME - Public Business Meeting Friday, March 31, 2 PM Eastern / 11 AM Pacific Zoom Link | Thread .................. S4ME social media: Facebook, Twitter, Mastodon and YouTube
Week beginning 20th March 2023 Part 1 of 2 News, articles and advocacy Austria CFS Hilfe announced on Facebook that the ME/CFS petition was handed over to the Health Committee with the support of all fractions. CFS Hilfe hopes for constructive treatment in the Health Committee and concrete political steps that will finally improve the situation of the ME/CFS patients in Austria. Article | Thread UK Government has published a plan to change disability benefits from 2026. Guardian Good riddance to the work capability assessment, the cruellest social policy of modern times - Frances Ryan Discusses problems that will arise from planned policy changes. "For all the promises of helping disabled people back into employment, the crux of this “welfare reform” is simple: those who contribute to the economy have value, and those who can’t are simply worth less." Article | Thread ME Association Budget 2023 Update: What Does It Mean For M.E.? - Ella Smith, Welfare Rights Adviser Explains the planned changes: "...there will be no blanket exemptions for work requirements for those with disabilities and that it is up to work coaches to determine what is appropriate for individuals. In addition to this, to be recognised financially as disabled, it is imperative to be also awarded PIP as this will be the only way to assess disability going forward." Article | Thread USA The Patient-Led Research Collaborative for Long COVID has proposed adding a new code for "post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE)" to the Symptoms and Signs chapter of the ICD-10-CM. Public comments are due by May 5, 2023. Proposal | Q & A | Thread USA The New Jersey Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association’s Medical Scholar Program has been renamed to honor the late Dr. Rosemary Underhill. Article | Thread Trial by Error by David Tuller What the Hell is Going on with Cochrane's Long-Delayed Re-Review of "Exercise Therapies"? A great summary about the missing progress at Cochrane concerning their review on exercise as ME treatment. "It is more than three years since Cochrane announced plans to develop this completely new review, but no one outside the organization seems to have much idea of what’s happening with that project." Article l Thread Cochrane Caroline Struthers has written a complaint to Cochrane about Editor-in-Chief Karla Soares-Weiser and two avoidable and serious errors in the Exercise Therapy for Chronic Fatigue Syndrome Review that have not been corrected. Thread Trial by Error by David Tuller An Update on the Missing Ethics Corrections in Multiple Esther Crawley Papers Tuller has alerted UK's Health Research Authority (HRA) that Professor Crawley has still not corrected the ethics statements in all of the 11 papers as she was recommended to by HRA in 2019. HRA's Chief Executive has therefore now contacted editors of the journals for which corrections have not yet been made. Article l Thread Long Covid Advocacy Professor Catastrophe - Simon Wessely Part One - The Wessely Files This blog starts by highlighting the appointment of Prof Wessely as a Non-Executive director of NHS England, and that around the same time "Long Covid targets were removed by NHS England and the condition deprioritised". The article focuses on Wessely's role in misdiagnosing several mass poisoning events including Gulf War syndrome as mass hysteria, and the consequent delay for sufferers getting appropriate care and compensation. Wessely's role in ME/CFS is mentioned at the end as 'the greatest medical scandal of the 21st century'. Article | Thread Sweden The newspaper Folkebladet writes about an ME clinic with a digital rehab for ME/CFS. Patients have been reporting that the staff lack knowledge about ME, that medical assessment is not thorough, no treatment or harmful treatment and no home visits to severe ME sufferers. ME advocate and forum member MittEremitage has followed this case closely over time with several articles and also sent a complaint to the Chancellor of Justice who has initiated an investigation. Folkbladet article (paywalled) l MittEremitage article (google translated) l Thread Identity Theory Knowledge of Missing Out Diane Shipley, freelance writer and ME sufferer with an excellent article on fear of missing out (FOMO) when suffering from a chronic disease: "As bitter as I feel about other people’s ignorance at how much missing out is possible, their horror at being asked to shut down their lives for a few weeks implies that anyone would react badly to circumstances like mine" Article l Thread Minnesota Physician Magazine Long COVID - Facing a shadow pandemic Good cover feature story on Long Covid by program manager for Long COVID and Post-COVID Conditions at the Minnesota Department of Health, Kate Murray, and state epidemiologist and medical director for same department, Ruth Lynfield. Mentions that many meet diagnostic criteria for dysautonomia, POTS or ME/CFS and that post-infection conditions like ME/CFS and chronic Lyme disease have been dismissed for decades. Article l Thread Rolling Stone Can an Addiction Drug Treat Long Covid? About low-dose naltrexone (LDN) as a rather unknown, but perhaps useful drug for Long Covid and the need for more clinical trials. "LDN also has yet to go fully mainstream because the medical establishment has long ignored and dismissed the chronic and invisible conditions it has been used to treat - ME/CFS in particular". Article l Thread The Guardian Science Weekly Podcast on Long Covid with astronomer and long Covid sufferer Catherine Heymans and Professor in immunology Danny Altman as guests. Heyman's best management advice for Long Covid is pacing, which she learned about from the ME community. Podcast l Thread Trude Schei, deputy CEO of the Norwegian ME Association and co-author of a report on severe and very severe ME/CFS in Norway recently published in the Journal of Clinical Medicine, has written an article about the report at Health Rising. "We are hoping that our report and the paper will contribute to shed light on the plight of the severely ill, and also to better care for this severely neglected group". Article l Thread Independent Sage Interesting discussion on Long Covid with, among others, Dr. Eric Topol and Julia Moore Vogel. Vogel says that the psychosomatisation of Long Covid "is building on decades and decades of dismissing disorders that are similar to this like chronic fatigue syndrome". She warns against undocumented treatments and approaches like graded exercise therapy which "is doing a lot of harm and still being recommended by a lot of physicians who don't understand Long Covid and particularly ME/CFS". YouTube video l Clips on Twitter provided by ABrokenBattery l Thread ............. Coming Events CDC Update: Recent Strides in Long Covid Webinar hosted by Solve ME Wednesday, March 29, 10 to 11 AM Pacific Time Details | Thread Germany The newly founded ME/CFS Research Foundation is organizing an international ME/CFS research conference on 11-12 May in Berlin. Speakers include Leonard Jason, Anthony Komaroff, Bhupesh Prusty, and Carmen Scheibenbogen amongst others. Article | Thread INIM 2023 Conference Institute for Neuro-Immune Medicine, Nova Southeastern University - Florida Friday, May 19 12:30 to 5:00 PM Eastern Time Event Details | Thread .............. Continued in the next post.
Week beginning 20th March 2023 Part 2 Research news New Zealand (Aotearoa) Post-Viral Research Aotearoa Founded in 2022 with lead researcher immunologist Dr Anna Brooks. Crowd-Funded Research into Long Covid, ME/CFS & Other Post-Viral Illnesses Hosted at the University of Auckland. Volunteers are needed for the study "Immunity and Molecular studies of SARS-CoV-2 infection, post-viral conditions and COVID-19 vaccination". Website | Donate | Participate | Thread UK DecodeME based at the University of Edinburgh is recruiting a Communications and Engagement Manager on a fixed term contract until August 2024. "We are looking for a skilled communications professional to lead on the delivery of top quality, creative and engaging content and recruitment of participants for the DecodeME project, the world’s largest study of ME/CFS." Job details | Thread | Take part | Thread Australia Deakin University Can dietary supplementation with krill-oil improve ME/CFS symptoms? 12 week study recruiting adult participants in the Melbourne and Geelong area. Emerge article | Thread Physios for ME University of Liverpool Institute of Population Health blog by Dr Nicola Baker. Describes her work on ME/CFS including the recently published study on experiences with heart rate monitoring (see below), and the value of working with patients. "Working with Patient and Public Involvement (PPI) is not a tick box exercise it is essential to understand a world that we as researchers can only observe." Article | Thread USA/NIH A clinical trial to study the effects of Paxlovid in Long Covid patients has been announced. This study does not require site visits. Participants living in Connecticut, Florida, and New York who meet the inclusion criteria can enroll. Details | Thread ............... Research Biomedical ME/CFS research Preprint Developing a blood cell-based diagnostic test for ME/CFS using peripheral blood mononuclear cells - Xu et al "Here we use Raman micro-spectroscopy to examine differences between the spectral profiles of blood cells of ME/CFS, MS and healthy controls. We were able to discriminate the three groups using ensemble classification models with high levels of accuracy (91%) with the additional ability to distinguish mild, moderate, and severe ME/CFS patients from each other (84%)." Preprint | Thread Blood Reviews Cardiovascular and haematological pathology in ME/CFS: A role for viruses - Nunes, Kell, Pretorius "Here we review the ME/CFS literature to summarize cardiovascular and haematological findings documented in patients with the condition, and, in this context, briefly discuss the potential role of previously-implicated pathogens." They conclude: "This review highlights the potential of studying cardiac functioning, the vasculature, and coagulation system in ME/CFS." Article | Thread Other ME/CFS research IO Press An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome - Clague-Baker et al. 488 people with ME completed the survey. A heart rate monitor helped most respondents to recognize post-exertional malaise triggers better. 57% felt the main negative was the lack of support from carers or medical professionals. Article | Thread IOS Press Two symptoms can accurately identify post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome - Davenport et al. 49 ME/CFS patients and 10 healthy control subjects completed two maximal cardiopulmonary exercise tests separated by 24 hours. The authors found that post-exertional cognitive dysfunction, decline in function, and lack of positive feelings/mood may help to identify post-exertional malaise. Article | Thread IOS Press Development and measurement properties of the PEM/PESE activity questionnaire (PAQ) - Davenport et al. The authors tested the PAQ and found that it had good test-retest reliability and few signs of ceiling or floor effects. Article | Thread Long Covid research Frontiers in Molecular Biosciences Untargeted analysis in post-COVID-19 patients reveals dysregulated lipid pathways two years after recovery — López-Hernández et al. “In this study we aimed to evaluate the clinical and lipidomic profiles (using non-targeted lipidomics) of recovered patients who had a mild and severe COVID-19 infection (acute phase, first epidemic wave); the assessment was made two years after the initial infection.” Article | Thread JAMA Internal Medicine Association of Treatment With Nirmatrelvir and the Risk of Post–COVID-19 Condition — Yan Xie et al. “This cohort study found that in people with SARS-CoV-2 infection who had at least 1 risk factor for progression to severe disease, treatment with nirmatrelvir within 5 days of a positive SARS-CoV-2 test result was associated with reduced risk of PCC across the risk spectrum in this cohort and regardless of vaccination status and history of prior infection” Article | Thread International Journal of Cardiology Cardiovascular Risk and Prevention Post –acute sequalae of COVID-19 and cardiac outcomes in U. S. military members — Mabila et al. “A cohort study of U. S. military members who had a COVID-19 test result, with the specimen collected between March 1, 2020 and November 30, 2021 was conducted.” “In conclusion, we observed a significant association between PASC and cardiac outcomes including; myocarditis, pericarditis, and heart failure. These associations were observed in a relatively young and healthy population and among those without pre-existing cardiac diagnoses.” Article | Thread Viruses Neurological Dysfunction in Long COVID Should Not Be Labelled as Functional Neurological Disorder — Van der Feltz-Cornelis et al. “Although diagnostic classification according to the ICD-11 and DSM-5-TR is dependent predominantly on the exclusion of any other medical condition that could account for the symptoms, current neurological practice of FND classification allows for such comorbidity. As a consequence, Long COVID patients with motor and balance symptoms mislabeled as FND have no longer access to Long COVID care, whereas treatment for FND is seldom provided and is ineffective.” Article | Thread .............. S4ME social media: Facebook, Twitter, Mastodon and YouTube
Week beginning 27th March 2023 News, articles and advocacy Nina E. Steinkopf has written an article with more details about an ME seminar in Oslo with a biopsychosocial approach for specially invited. Steinkopf has asked one of the attendees, the chief physician for the Norwegian Labour and Welfare Administration, why she participated. Steinkopf also writes about the network of some of the attendees. Article l Thread Hungary Forum Member Wyva was asked by the editor-in-chief of the health website InforMed to write an up-to-date article on ME/CFS. Article | Thread Finland The Finnish ME/CFS Association writes on Facebook that MP's are requesting an investigation into a recent Long Covid seminar with a biopsychosocial approach with among others Prof. Michael Sharpe and Prof. Paul Garner as speakers. The seminar is being criticised for potentially causing harm and endanger patient safety. Facebook post l Thread UK ITNews ITV Meridian has done a special investigation into Long Covid and children with several articles and TV segments. It's estimated that there are currently 70,000 children with Long Covid in the UK. ITVNews has spoken to several families with experience with Long Covid, including Dr. Binita Kane who said that post viral illness is not new, that ME/CFS has been affecting children for decades, but has been neglected. ABrokenBattery has provided clips and link to the full interview with Dr. Kane. Twitter thread l Thread UK TUC report Workers' experience of Long Covid Joint report by the TUC and Long Covid Support This Trades Unions Congress article includes a summary of legal duties on employers to make reasonable adjustments at work, disability and work related benefits, and a section on energy limiting illnesses including ME/CFS. Article | Thread Health Affairs Long COVID: Incidence, Impacts, And Implications - by David Putrino Thorough article on the importance of differentiating between subtypes of Long COVID and of personalised approaches. "It should also be acknowledged that many patients (roughly half) with a Long COVID diagnosis will meet the criteria for ME/CFS, and there is much that we can learn from this engaged community of patients". Article l Thread The Otter ME/CFS: The Neglected Pandemic A well researched article by Timothy Cooke on long Covid's "older sibling", ME/CFS. Includes two detailed patient stories about Haley Radigan and Sabrina Poirier on the development of their illness and on finding their way in a health care system lacking knowledge about the disease. Also provides a historical background and several quotes from ME experts. Article l Thread Healthcare Hubris Media silence on the politics driving 'one of the biggest medical scandals of the 21st century' - Joanne Hunt "...this blogpost will demonstrate that people with diverse social positionalities have, over the years, detailed the web of morally void allegiances and self-interest that drives such politics and neglect - with apparently no interest whatsoever from the UK press." Article | Thread Medscape Treating Long-COVID Brain Fog With ME/CFS Guidelines The article provides management tools for clinicians to pass on to Long Covid patients with brain fog as pacing, memory aids and more. Article l Thread Rebecca Watson, a commentator on science and critical thinking, has made a YouTube video titled "Physics Girl & the Devastating Effects of Long COVID" where she also goes into the history of ME/CFS and the mistreatment of this patient group. Video l Thread Dr. Edzard Ernst, a retired physician and researcher into alternative treatment, has written his second critical article about Lightning Process (LP). Even though proponents of LP are claiming a 90% improvement rate, user surveys from Norway show a very different picture. Ernst links to the website LP-stories where patients have shared their stories of deterioration from LP. He concludes: "The NICE guidelines for ME/CFS specifically (an in my view rightly) warn against offering LP to ME patients". Dr. Edzard Ernst has in another article looked into some systematic reviews addressing alternative treatments (in his term: "So-called alternative medicine" - SCAM) for ME and concludes: "be very cautious about the many claims made by SCAM enthusiasts; if it sounds too good to be true, it probably is!" Article l Article l Thread .............. Fundraising Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Spring 2023 David Tuller has, via The University of California, Berkeley, launched a new fundraiser to continue his important work including the Trial By Error-series at Virology blog, commentaries for academic journals and stories for news organisations. The goal is to raise 65 000 USD during April. This will secure Tuller's work from June through December 2023. Fundraising l Thread .............. Research news and commentary UK DecodeME The research team has published Version 1 of their data analysis plan as a 28 page pdf, and a much shorter lay summary. "This outlines how DecodeME recruits cases (via our questionnaire) and – separately – controls (from The UK Biobank)." The summary explains how they will ensure the most suitable controls, carry out a series of analyses, and interpret the results. Analysis plan | Summary | Thread Nature Long COVID exercise trials proposed by NIH raise alarm Good article on the problematic and potentially harmful aspects of a planned exercise study for long Covid from the RECOVER initiative. Provides information on PEM and how exercise can be counterproductive for patients with this symptom. Includes interview with among others Jamie Seltzer from #MEAction. Article l Thread Trial by Error by David Tuller Why Are Exercise Studies for Long Covid Still Failing to Address PEM Adequately? Tuller writes about a confusion among some researchers concerning what PEM is. When it comes to exercise studies, he writes: No "exercise reporting template" for long Covid is acceptable if it fails to include a recommendation of rigorous pre-screening for PEM/PESE. Article l Thread The Lancet Respiratory Medicine Concerns regarding a suggested long COVID paradigm Various letters have been published criticizing an article that proposed a biopsychosocial approach to Long Covid. Cornish & Stelson Article | Thread Jenny Van Der Palen Article | Thread Schwendinger et al. Article Authors' reply Article | Thread ............... Research Biomedical ME/CFS research Journal of Clinical Medicine Serum GDF-15 Levels Accurately Differentiate Patients with Primary Mitochondrial Myopathy, Manifesting with Exercise Intolerance and Fatigue, from Patients with Chronic Fatigue Syndrome - Bermejo-Guerrero et al The authors conclude that "GDF-15 emerges as a promising biomarker to select which patients with fatigue should undergo further studies to exclude mitochondrial disease." Paper | Thread Other ME/CFS research European Journal of Health Communication Online Health Communities in Controversy over ME/CFS and Long Covid - Sally Jackson This paper discusses the role of the online ME/CFS community in shaping the NICE guidance. Article | Thread Psychology, Health & Medicine Health outcomes of sensory hypersensitivities in myalgic encephalomyelitis/chronic fatigue syndrome and multiple sclerosis - Maeda et al. This paper found that hypersensitivities to noise and lights were more prevalent in patients with ME/CFS than patients with Multiple Sclerosis. Article | Thread Long Covid research Brain, Behavior, and Immunity COVID-19 Vaccination for the Prevention and Treatment of Long COVID: A Systematic Review and Meta-analysis — Ceban et al. “Seven of 9 studies determined that the majority of individuals presenting with long COVID at baseline did not experience changes in their symptoms following 1 or more SARS-CoV-2 vaccine doses. Conversely, Strain et al. reported that 57.9% of individuals experienced improvement in symptoms following vaccination, compared to 24.3% reporting no change, and 17.9% reporting deterioration.” Article | Thread Nature Scientific Reports Retinal tissue and microvasculature loss in COVID-19 infection — Kalaw et al. “Total retinal vessel density was significantly lower in the severe COVID-19 group compared to the normal and mild COVID-19 groups (p = 0.004 and 0.0057, respectively). The intermediate and deep capillary plexuses in the severe COVID-19 group were significantly lower compared to other groups (p < 0.05). Retinal tissue and microvascular loss may be a biomarker of COVID-19 severity.” Article | Thread ................ Coming events Bateman Horne Center - Free Online Support Groups Advance Registration Required (see threads to convert time to your time zone) Topic: Working with brain fog and cognitive processing Tuesday, April 11, 1 PM Mountain Time Announcement | Thread Topic: Relationships & Intimacy Tuesday, April 18, 1 PM Mountain Time Announcement | Thread .................. S4ME social media: Facebook, Twitter, Mastodon and YouTube
