Week beginning 24th June 2024
News, advocacy and articles
Physios for ME Celebrate Our Five Year Anniversary
The team of four celebrate their significant and worthwhile achievements in their first five years, including publication of their book,
"A Physiotherapist's Guide to Understanding and Managing ME/CFS", and ongoing work on resources, advocacy, education and research.
Article |
Thread
Medscape How to Fix $1.6 Billion Long COVID Program: Experts Weigh In
Suggestions from researchers and patients for improving the NIH RECOVER initiative for Long Covid research.
Article |
Thread
Trial by Error by David Tuller The Conversation Recycles Biopsychosocial Nonsense
"A
new piece in The Conversation shows just how problematic it is when poorly done biopsychosocial studies claim to have documented that cognitive and/or behavioral therapies are effective—and when these questionable findings are published in high-impact journals. The headline of the article: “
Success in treating persistent pain now offers hope for those with Long COVID.”
My response to that: “No it doesn’t.”"
Article l
Thread
BMJ Letter - Long covid: I'd rather have a well researched and well informed doctor than "become my own physician"
In 2022 Carl Jreidini wrote about taking the lead himself in his long Covid care and asked for "more collaborative, open-minded relationship with healthcare professionals". Karen L. Hargrave has written a response sharing her own and her husbands' experience with long Covid and ME/CFS, spending hours doing research and being more informed than the clinicians. She says: "Let's not let our actual physicians off the hook" and that she'd rather have a well informed doctor.
Jredini´s
article l Hargrave's
response l
Thread
#MEAction has announced their Severe ME Artists Project for 2024 in recognition of Severe ME Day on August 8th. Anyone who identifies as having severe ME can participate. Submissions are due by July 25.
Article |
Thread
KSL News Radio The long arm of long COVID in Utah
This article links to the new definition for Long Covid from the National Academies of Science, Engineering and Medicine. It also discusses the prevalence of and possible risk factors for Long Covid. ME/CFS and POTS are also mentioned.
Article |
Thread
Bateman Horne Center The Basics: Post-Exertional Malaise (PEM)
A short video (3 1/2 minutes) on post-exertional malaise, the second video in a series called The Basics.
Video |
Thread
Solve ME The summer 2024 edition of The Chronicle is now available.
Announcement |
Thread
.............
Research news and commentary
ME Research UK June newsletter
"This month, ME Research UK is delighted to announce the funding of two new research projects.
Prof. François Jérôme Authier and colleagues will assess neurocognitive impairment in people with ME/CFS.
Dr Rob Wüst aims to identify microclots in the muscle and blood of people with ME/CFS and investigate their relationship to post-exertional malaise."
Article |
Thread
ME/CFS Skeptic: The problems with POTS
The diagnostic criteria for postural orthostatic tachycardia syndrome (POTS) have been questioned by several research groups. Healthy people often have orthostatic tachycardia without any symptoms and most patients with orthostatic symptoms do not have tachycardia when standing upright. Are the POTS criteria invalid? This blog post takes a closer look at the evidence.
Article |
Thread
.............
Research
ME/CFS research
Qeios preprint
Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206 - Jonathan Edwards
"In the United Kingdom, a small but steady stream of people diagnosed with ME/CFS have run into serious problems with nutrition because of difficulties with eating and drinking, and some have not survived."
"The following is a review of the clinical problem, including some suggestions for protocol content that might supplement NICE Guideline NG206. The main conclusion is that there is an urgent need for a consensus amongst professionals that focuses on practice based on reliable evidence rather than theory-laden diagnosis.
"
Article |
Thread
Bioarxiv preprint
BioMapAI: Artificial Intelligence Multi-Omics Framework Modeling of ME/CFS - Ruoyun Xiong et al
"By connecting multi-'omics to a symptom matrix, BioMapAI identified both disease- and symptom-specific biomarkers, reconstructed symptoms, and achieved state-of-the-art precision in disease classification."
A connectivity map created using this data "revealed how microbiome-immune-metabolome crosstalk shifted from healthy to MECFS". This enabled formation of several hypotheses.
Article |
Thread
Research Square preprint
Flow Clotometry: Measuring Amyloid Microclots in ME/CFS, Long COVID, and Healthy Samples with Imaging Flow Cytometry - Pretorius et al.
"We demonstrate significant microclot prevalence in ME/CFS and LC, with LC patients exhibiting the highest concentration (18- and 3-fold greater than the healthy and ME/CFS groups, respectively). This finding underscores a common pathology across both conditions, emphasizing a dysregulated coagulation system."
Article |
Thread
Frontiers in Immunology
Hypocortisolemic ASIA: A vaccine-and chronic infection-induced syndrome behind the origin of long COVID and ME - Ruiz-Pablos et al
"the purpose of this review is to suggest a possible autoimmune origin against the adenohypophysis and a possible improvement of symptoms after treatment with corticosteroid replacement therapy."
Article |
Thread
Clinical Therapeutics
Successful Subcutaneous Immunoglobulin Therapy in a Case Series of Patients With [ME/CFS] - Sjogren et al.
In this limited-sized case series [n=17], we found pronounced beneficial effects of low-dose IG in a large proportion of patients with infection-related ME/CFS.
Article |
Thread
Fatigue: Biomedicine, Health & Behavior
White-matter changes associated with a synergetic treatment for ME/CFS - Mohamed et al.
A case report found some differences in white matter between cases treated with spironolactone, colchicine, low-dose naltrexone, and multivitamins compared with controls.
Article |
Thread
Chicago University
A Syndrome in Search of a Virus. ME/CFS, Disease Paradigms, and the Social Function of Pathogens.
"This article argues that ME/CFS’s emergence was entangled with HIV/AIDS. Once the cause of AIDS was widely agreed upon by the 1990s, the virus-to-syndrome model became the predominant paradigm for understanding syndromic diseases of as-yet unknown cause."
Article |
Thread
British Journal of Occupational Therapy
What is the occupational impact of myalgic encephalomyelitis/chronic fatigue syndrome for adults living in Australia? - Thomas et al.
"Twenty-nine participants completed the Occupational Self-Assessment. A decrease in occupational participation across all domains was evident."
Article |
Thread
Journal of Psychosomatic Research
Is the effect of cognitive behaviour therapy for chronic fatigue syndrome (ME/CFS) moderated by the presence of comorbid depressive symptoms? A meta-analysis of three treatment delivery formats - Kuut et al.
The authors argue that "in internet-based CBT, ME/CFS patients with comorbid depressive symptoms benefit less, making face-to-face CBT currently the first-choice delivery format for these patients."
Article |
Thread
Long Covid research
Nature Human Behaviour
Short- and long-term neuropsychiatric outcomes in long COVID in South Korea and Japan — Kim et al.
"A range of conditions including Guillain-Barré syndrome, cognitive deficit, insomnia, anxiety disorder, encephalitis, ischaemic stroke and mood disorder exhibited a pronounced increase in long-term risk."
Article |
Thread
Behavioural Brain Research
An immersive virtual reality-based object-location memory task reveals spatial long-term memory alterations in Long-COVID — Llana et al.
"The Long-COVID group showed fewer correct responses, made more task attempts, and invested more time in the iVR-based OLM task than the Control group. Delayed memory was more severely altered than immediate memory in Long-COVID participants."
Article |
Thread
Journal of Sports Medicine and Physical Fitness
Habitual physical activity and COVID-19 — Beth W. Glace et al.
"Factors predictive of poor PA recovery were higher pre-diagnosis PA, shortness of breath and fatigue during acute illness, and fatigue chronically."
Article |
Thread
Pathogens
Differential Gene Expression in the Upper Respiratory Tract following Acute COVID-19 Infection in Ambulatory Patients That Develop Long COVID — Biondi et al.
Study of 11 LC vs 34 healthy patients transcriptome at day 14 of Covid infection. "We identified 26 upregulated genes in patients experiencing long COVID. Dysregulated pathways including complement and fibrinolysis pathways and IL-7 upregulation."
Article |
Thread
Clinical Gastroenterology and Hepatology
Faecal microbiota transplantation for sleep disturbance in post-acute COVID-19 syndrome — Raphaela I. Lau et al.
"At week 12, more patients in the FMT than the control group had insomnia remission (37.9% vs 10.0%; p=0.018). The FMT group showed a decrease in ISI score (p<0.0001), PSQI (p<0.0001), GAD-7 (p=0.0019), ESS (p=0.0057) and blood cortisol concentration (p=0.035) from baseline to week 12, but there was no significant change in the control group."
Article |
Thread
GeroScience
Post-acute sequelae of SARS-CoV-2 infection (Long COVID) in older adults — Russell et al.
"At this point, we can mostly admit that we “know that we don’t know much” about PASC in older adults. Part of the reason for the lack of knowledge is the general limitations in the literature on PASC."
Article |
Thread
Frontiers in human neuroscience
Subjective brain fog: a four-dimensional characterization in 25,796 participants — Alim-Marvasti A et al.
"7,280 of 25,796 individuals (28.2%) reported experiencing brain fog, who were generally older (mean brain fog 35.7 ± 11.9 years vs. 32.8 ± 11.6 years, p < 0.0001) and more likely to be female (OR = 1.2, p < 0.001)." "Comorbidities included long-COVID-19 (OR = 3.8, p < 0.0001), concussions (OR = 2.4, p < 0.0001), and higher migraine disability assessment scores (MIDAS) (+34.1%, all p < 0.0001)."
Article |
Thread
....................
S4ME social media:
Forum,
Facebook,
Twitter,
Mastodon and
YouTube