News in Brief - December 2024

This thread has a Science for ME 'News in Brief' post for each week in December 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

 

Week beginning 2nd December 2024

Part 1 of 2

News, articles and advocacy

UK APPG The All Party Parliamentary Group for ME, as all APPG's, was laid down at the election. A new group is being launched, with its first meeting at 1700 to 1830 on 17th December 2024. The agenda will include elections and discussion of priorities, including engagement with the Health and Social Care Select Committee, APPG inquiry into severe ME and the Final Delivery Plan for ME. There is a template letter for people to ask their MP to attend.
Details | Thread

The Times reports that NHS is to review ME services after the coroner at Maeve Boothby O´Neill's inquest issued a prevention of future deaths report and highlighted the lack of treatment for severe sufferers. NICE will also be reviewing the evidence regarding dietary management for severe ME patients. Maeve's father Sean O´Neill comments that this is a positive sign and adds: “However, the actual responses are lacking substance. There is no sign that anything will be done to tackle the coroner’s main concern — that care provision for people with severe ME is ‘non-existent’ in the NHS. And it is upsetting to hear that the Department of Health’s delivery plan on ME appears to have been delayed again until March 2025 — almost three years after work on it began when Sajid Javid was health secretary.”
Article (paywalled) l Thread

Switzerland SRF writes about a survey by Long COVID and ME/CFS patient organisations showing rehabilitation leading to deterioration for half of the respondents and improvement only for 17%.
Article l Thread

Austrian National Television has made a documentary in German titled "Much Suffering, Little Help - The Illness of ME/CFS".
Documentary l Thread

Australia Good article in Crikey on the serious social and economical consequences of Long COVID. "The result of infection is lasting symptoms. The result of lasting symptoms: suffering. As the report of the committee into long COVID says, long COVID causes “lost earnings, impacts on household finances, and, in some cases, an inability to work or to extend care to family members including children”."
Article l Thread

Royal Australasian College of Physicians (RACP) is seeking a member to join the NHMRC Guideline Development Group for ME/CFS.
More information l Thread

#ThereforME has made a wonderful advent calendar of supportive messages to ME and Long COVID patients. The calendar is shared on #ThereForME's social media accounts on Substack, Twitter/X, Instagram, Bluesky and Facebook.
#ThereForME on social media l Thread

Rooted in Rights "Doing Harm: How The Remnants of 'Hysteria' Impact Chronically Ill People"
Rooted in Rights is an initiative for telling disability stories by disabled people. They have shared this blog by Leah Stagnone who co-founded #MEActions's New Hampshire State Chapter. "... chronically ill people of marginalized gender identities, and just about anyone with a chronic health condition that disproportionately affects women, can attest that modern medicine hasn’t progressed as far beyond the hysteria diagnosis as one might expect."
Blog l Thread

#MEAction has released a new episode of the Chronically Complex podcast, Episode 9: The Pillow Writers. This ME/CFS writing group has published a collection (fiction and non-fiction, poetry and prose) called Pillow Writers Anthology 1: Near-Life Experiences. #MEAction is sponsoring a giveaway of one paperback copy and one audiobook. Entry deadline is December 15, see thread for details.
Podcast website | Thread

Pop Sugar "Millions Are Suffering From Chronic Fatigue Syndrome — So Where’s the Urgency?"
An article about ME/CFS which shows how research is still underfunded when compared to disease burden. It includes personal experiences from patients (one patient who developed ME/CFS after a COVID infection) as well as quotes from medical experts.
Article | Thread

The Sick Times "We talked to a veteran lawyer about applying for disability insurance with Long COVID and ME"
An experienced lawyer offers advice on how to apply for disability benefits. Discussion includes both social security disability insurance (SSDI) and long term disability (LTD) plans covered by ERISA law. Advice is meant for patients in the USA.
Article | Thread
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Coming events

IACFS/ME will organise their 17th Medical and Scientific Conference in Florida, USA October 22-25, 2025. The event is co-sponsored by the Institute for Neuro-Immune Medicine at Nova Southeastern University.
Thread with more information

Bateman Horne Center - Free Online Support Groups
Tuesday, December 10, 1:00 - 2:00 PM Mountain Time
Topic: Attending to Loneliness
Tuesday, December 17, 1:00 - 2:00 PM Mountain Time
Topic: Facing the Holidays with Chronic Illness
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread

Solve ME Webinar
"The Future of IACCI and Long Covid Research: ME/CFS and the Unfinished work of the COPVS Task Force"
Solve President & CEO Emily Taylor and Dr. Leonard Jason are the speakers.
Wednesday, December 18
10 AM Pacific / 1 PM Eastern / 6 PM in Great Britain & Ireland
Website | Thread
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Advocacy

Petition A Research Case Definition Consensus Statement calling for a consistent set of required inclusion criteria and to consistent exclusionary conditions as well as a consistent approach for evaluation of key criteria in research into ME. The initiative is led by Caroline Kingdon, Adam Lowe and Leonard Jason. The call has been signed by several researchers and organisations. Others are also invited to sign.
Petition l Thread
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Research news

OMF Interview on YouTube with Dr. Ron Davis on the Neutrophil Assessment Platform project and its potential impact on understanding ME/CFS. An early finding which needs to be confirmed is that ME/CFS neutrophils may move slower. Forum member forestglip has provided a summary.
Interview l Thread with summary

Ron Davis and Janet Dafoe have given a talk for the Bay Area ME/CFS support group about recent work on the itaconate shunt hypothesis. The talk was recorded over Zoom and has been made available for everyone to see.
Talk l Thread

Solve ME "An Overview of the Fall 2024 PolyBio Symposium" (two parts)
Solve ME has posted a two part overview of the recent Fall 2024 PolyBio Symposium including screenshots from some of the presentations.
Part 1 | Part 2 | Thread

Trial By Error (Virology Blog) - Zeraatkar et al.
'Yet Again BMJ Recommends CBT and Exercise for Long Covid'
David Tuller comments on the new review on interventions for Long Covid. He notes that the review makes unfounded recommendations and incorrectly refers to him as a patient or healthcare provider.
Article | Thread

BMJ rapid response - Zeraatkar et al.
Long COVID needs real therapeutics: time to move past disproven approaches
A group of several academics including Brian Hughes published a critically commentary on new BMJ review on Long Covid. They write: "Long COVID research should learn from the mistakes of ME research, and swerve away from an inexplicable focus on rehabilitative approaches to the production of well-designed and ambitious trials into therapeutics that target the immune dysfunction, persistent pathogens, vascular abnormalities, and mitochondrial dysfunction that have been shown to underlie Long COVID symptomatology."
Article | Thread

BMJ rapid response - Zeraatkar et al.
'Heterogeneity in long COVID and inadequate assessment of post-exertional malaise contribute to issues of indirectness in trials with high risk of bias'
The comment by patient researcher and S4ME forum member Dominic Salisbury, argues that "despite being presented as a (living) systematic review, the present conclusions are based on results from only a single trial in each case (REGAIN for physical and mental health rehabilitation; and a Dutch trial of CBT). Both of these studies have a high risk of bias..."
Article | Thread

ME/CFS Skeptic - Zeraatkar et al.
In a new article titled 'The BMJ review on Long Covid interventions', blogger ME/CFS skeptic argues that "the issue with imprecision has led to a reversal in that the review now recommends high-risk-of-bias outcomes while ignoring similar estimates that are at low risk of bias."
Article | Thread
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Go to the next post for part 2: Research

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Week beginning 2nd December 2024

Part 2 of 2

Research

ME/CFS research

Proceedings of the National Academy of Sciences
Transcriptional reprogramming primes CD8+ T cells toward exhaustion in Myalgic encephalomyelitis/chronic fatigue syndrome — Iu et al.
"it is currently unclear whether the T cell dysregulation we observed derives from a chronic infection, such as a virus that triggered or is reactivated in ME, or alternatively, as a result of an inflammatory environment in lieu of antigen-specific stimulation."
Article | Thread

Long Covid research

Brain, Behavior, and Immunity
Upregulation of olfactory receptors and neuronal-associated genes highlights complex immune and neuronal dysregulation in Long COVID patients — Shahbaz et al.
"We found that LC patients had a distinct transcriptional profile compared to controls. Key findings include the upregulation of genes involved in immune dysregulation and neuronal development, such as Fezf2, BRINP2, HOXC12, MEIS2, ZFHX3, and RELN."
Article | Thread

Frontiers in Immunology
A blood-based mRNA signature distinguishes people with Long COVID from recovered individuals — Missailidis et al.
"In this study we showed that the reduced expression of LILRB1 and LILRB2 alone discriminated a small pilot cohort of Long COVID PBMC samples from COVID recovered controls without overlap."
Article | Thread

Frontiers in Psychiatry
Structural MRI correlates of cognitive and neuropsychiatric symptoms in Long COVID: a pilot study — Joshi et al.
"Results showed increased cortical thickness in the caudal anterior, isthmus, and the posterior cingulate gyrus as well as the rostral middle frontal gyrus respectively along with higher gray matter volume in the posterior cingulate and the isthmus cingulate in patients with Long COVID."
Article | Thread

Journal of Medical Virology
Association Between NK Cell Genetic Variants and the Development of Long COVID Associated- and Prepandemic Small Fiber Neuropathy — Marianne Graninger et al.
"we show that patients with SFN unrelated to SARS‐CoV‐2 infection exhibited markers of impaired NKG2C functions significantly more frequently than healthy controls, while this was not observed for patients with LC‐associated signs of smallfiber dysfunction, including patients with confirmed LC‐SFN."
Article | Thread

Preprint: Research Square
Smartphone-based monitoring of heart rate variability and resting heart rate predicts variability in symptom exacerbations in people with complex chronic illness — Annie Aitken et al.
"This study is the first to use data-driven models to predict everyday symptom experiences in individuals with complex chronic illnesses based on biometric fluctuations. Findings demonstrate the potential utility of mobile health tools for real-time monitoring of symptoms"
Article | Thread

Nature Communications Medicine
A 24-month National Cohort Study examining long-term effects of COVID-19 in children and young people — Stephenson et al.
"We found that 7.2% of children and young people consistently meet the ‘Long COVID’ research definition at 3-, 6-, 12- and 24-months postinfection."
Article | Thread

Health Services Research
Long COVID and financial hardship: A disaggregated analysis at income and education levels — Biplab Kumar Datta et al.
"Our findings suggest that long COVID influenced the economic wellbeing of individuals from all SES categories while households at [income-to-poverty ratios] <2.00 were hit especially hard."
Article | Thread
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Edited to remove a duplicate item that was in last week's News in Brief.