Week beginning 10th February 2025
News, advocacy and articles
Issues in Science and Technology "Centering Patients in Long COVID Research" by Brian Vastag
Thorough article on the importance of including patients in research initiatives on Long Covid, on previous and current challenges and lessons from the history of ME/CFS. ".... patients’ visibility and voices are likely key to developing effective treatments for long COVID"
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Norway Patient advocate Lena Kjempengren-Vold has written a good opinion piece for the Journal of the Norwegian Medical Association about how professionals with a biopsychosocial approach of ME, such as the Oslo Chronic Fatigue network and the COFFI network, talk
about ME patients, not
with them. She describes how this leads to the continuation of treatments such as CBT and GET, despite patients and research reporting they are harmful. Professor Vegard Bruun Bratholm Wyller from the COFFI network wrote a response proving her point by claiming it's difficult to understand what she meant and further that CBT/GET are safe and documented treatments for ME.
Kjempengren-Vold's
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The Sick Times "Now offline: Government resources about Long COVID as a disability"
Discusses the deletion of Long Covid disability information from some US government websites. Similar information about ME/CFS, POTS, and Lyme disease was not deleted. However, current law has not changed and "people with Long COVID are still legally entitled to accommodations."
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#MEAction has posted a new video, #MEAction Shares the Love. This is a compilation of images from members who were asked to "send in an image of a heart with the word(s) that describe why you love the #MEAction community."
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Trial by Error by David Tuller GET Ideologues Try to Rebut Muscle Abnormality Study-and Fail
About a rebuttal by Rob Wüst et al to a letter criticising their study which reported a link between PEM and muscle abnormalities in Long Covid patients. "It is a pleasure to read a pointed and effective smack-down of an ill-informed argument, especially when the argument is pushing the graded exercise therapy/cognitive behavior therapy (GET/CBT) paradigm for ME/CFS, Long Covid and related illnesses." See item below.
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More on Cochrane - again
Petition The S4ME petition 'Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review' has been running for 17 months and has over 15,700 signatories. It will remain open while the review remains.
The latest petition update, 'Significant revelations', highlights articles by journalists Martin Rücker in RiffReporter, and David Tuller in The Sick Times. It also updates on S4ME complaints. (see previous weeks' news)
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Update |
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Letter from Cochrane On 14th February the S4ME committee received a brief response from Cochrane Complaints apologising for not responding to S4ME's previous complaints. The letter says they carried out an investigation in 2024, including looking at the NICE, CDC and German evidence reviews and their own rules.
"The outcome of this assessment was that no grounds for withdrawal could be established by any of the requests for withdrawal."
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Hilda Bastian, leader of the Independent Advisory Group appointed by Cochrane in 2020 to advise the group writing the now cancelled new review, has continued to take actions related to the cancellation. She has set up a page to record her public actions, including: "My open letter asking the Cochrane Board questions about transparency of governance and minutes."
Hilda's page |
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Research
ME/CFS research
Nature Communications
The Dutch research team of Brent Appelman and Rob Wust have written a reply to the critique by Ranque et al., explaining that the abnormalities in the muscle tissue of Long Covid patients are unlikely due to deconditioning.
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Frontiers in Human Neuroscience
A network medicine approach to investigating ME/CFS pathogenesis in severely ill patients: a pilot study — Hung et al.
"By utilizing a network analysis on whole genome sequencing (WGS) data from the Severely Ill Patient Study (SIPS), we identified ME/CFS-associated proteins"
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Thesis: The University of Manchester
What is the psychological and educational impact of being an emerging adult living with ME/CFS? A qualitative interpretative phenomenological analysis — Emma Williams
"Feeling misunderstood was at the heart of many psychological and educational experiences." "All participants reported ME/CFS has restricted their lives, bodies or future. A detrimental tendency to push beyond energy capacity was exacerbated by pressure, frustration and/or denial. Most participants grieved for lost hobbies, abilities and opportunities and most participants spoke about inconsistent, fluctuating educational support for their ME/CFS needs."
Thesis |
Thread
Biomedicines
Cross-Sectional Study Evaluating the Role of Autonomic Nervous System Functional Diagnostics in Differentiating Post-Infectious Syndromes: Post-COVID Syndrome, Chronic Fatigue Syndrome, and Lyme Disease — Milovanovic et al.
"patients with Lyme disease exhibited reduced baroreceptor sensitivity and diminished changes in frequency domain heart rate variability parameters during orthostatic stress. Parasympathetic dysfunction was less prevalent in the Lyme disease group, while the Post-COVID syndrome and Chronic Fatigue Syndrome groups showed more pronounced autonomic imbalances."
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Preprint: medRxiv
Unveiling Sleep Dysregulation in Chronic Fatigue Syndrome with and without Fibromyalgia Through Bayesian Networks — Michal Bechny et al.
"Using a strictly controlled cohort of young-to-middle-aged females, we identified the effects of CFS and CFS+FM on alteration sleep and its dynamics, supporting their clinical differentiation."
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Long Covid research
Autonomic Neuroscience
Quantitative serum proteomic analysis for biomarker discovery in post-COVID-19 postural orthostatic tachycardia syndrome (PC-POTS) patients — Ryu et al.
"Both the integrin signaling pathway and the blood coagulation pathway showed the best enrichment significance, followed by the cytoskeletal regulation by Rho GTPase pathway." "Out of the 31 proteins, 28 proteins (MTPN, TAGLN2, ADP-ribosylation factor 1, PDLIM1, PLEK, PPIA, CNN2, TPM4, LGALSL, TXN, SERPINA5, PFN1, PARK7, MANF, CA2, CALML3, TLN1, COTL1, CFL1, RAB7A, FLNA, TUBA4A, ILK, TREML1, RSU1, FGA, F11, and GP1BA) displayed a significant increase, while only 3 proteins (IGHG2, SFTPB, and IGHG4) were significantly decreased."
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Preprint: MedRxiv
Integrative Multi-Omics Framework for Causal Gene Discovery in Long COVID — Sindy Pinero et al.
"our model revealed potential network driver genes, highlighting factors such as TP53, CREBBP, EP300, YWHAG, SMAD3, and GRB2 that may play crucial roles in network control."
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The Lancet Infectious Diseases
Targeting the SARS-CoV-2 reservoir in long COVID — Amy D Proal et al.
"a growing body of research centres around the persistence of SARS-CoV-2 as a driver of disease in at least some individuals." "Here, we draw from RNA virus biology, efforts to target the HIV reservoir, and clinical oncology to outline major considerations for the design and implementation of trials targeting SARS-CoV-2 persistence in long COVID."
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Immunology
Impact of Pre-Infection COVID-19 Vaccination on the Incidence and Severity of Long COVID: A Retrospective Case–Control Study — Elena Barado et al.
"In this study, complete vaccination prior to acute COVID-19 infection is associated with a reduction in the risk of developing long COVID in the multivariate analysis. Within the population affected by long COVID, complete vaccination before acute infection is associated with a reduction in long COVID symptoms and a reduced overall symptom count."
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JAMA Network Open
Pediatric Gastrointestinal Tract Outcomes During the Postacute Phase of COVID-19 — Dazheng Zhang et al.
"The cohort consisted of 1 576 933 pediatric patients" "the risk of abdominal pain was higher in COVID-19–positive patients during the postacute (2.54% vs 2.06%; ARR, 1.14; 95% CI, 1.11-1.17) and chronic (4.57% vs 3.40%; ARR, 1.24; 95% CI, 1.22-1.27) phases."
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Journal of Clinical Medicine
Exploring Hypercoagulability in Post-COVID Syndrome (PCS): An Attempt at Unraveling the Endothelial Dysfunction — Muys et al.
"When [Thrombomodulin] was included […] thrombin generation was notably higher" "Although we could not demonstrate a higher level of vWF in all PCS patients, 12.4% did […] all besides one exhibited a VWF(Ag)/ADAMTS13 ratio ≥ 1.5 […] all these patients presented with hypoperfusion in the frontal lobes or perfusion heterogeneity on cerebral perfusion scintigraphy."
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Frontiers in Neurology
Chronic fatigue and headache in post-COVID-19 syndrome: a radiological and clinical evaluation — Almeida et al.
"Our findings suggest a need to re-evaluate the role of MRI in managing patients with post-COVID-19 syndrome. The absence of a clear structural correlation with common symptoms such as fatigue and headaches indicates that MRI findings, while useful in excluding structural brain abnormalities, may not provide actionable insights for guiding therapeutic interventions."
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BMC Public Health
Healthcare utilization patterns before and after a long COVID diagnosis: a case-control study — DeVoss et al.
"We found significant changes in the patterns of healthcare utilization after an LC diagnosis. Most notably, patients increased outpatient utilization within a year after diagnosis, including visits to specialists, while reducing hospitalizations and ED utilization relative to controls and relative to the pre-diagnosis period."
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Journal of Global Health
Profiling the persistent and episodic nature of long COVID symptoms and the impact on quality of life and functional status: a cohort observation study — Owen et al.
"The data demonstrates little or no improvement over 16 weeks, while the frequency of contact throughout the study demonstrates the episodic and relapsing nature of long COVID."
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Preprint: BioRxiv
Identification of a multi-omics factor predictive of long COVID in the IMPACC study — Gisela Gabernet et al.
"Notably, our list of top androgenic steroid metabolites has strong overlap with the androgenic steroid signature from an independent all-female cohort of healthy controls compared to myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) patients."
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Preprint: MedRxiv
Post-Viral Frailty in Long COVID: A Distinct Phenotype within Veterans — Jerry Bradley et al.
"Frailty is defined as the decline of physiologic reserve that leads to increased vulnerability to stressors and poor health outcomes." "Patients with frailty in the Long COVID group experienced exhaustion and low activity at a higher rate than those in the Geriatric frailty clinic."
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