News in Brief - October 2024

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

 

Week beginning 30th September 2024

Part 1 of 2

News, articles and advocacy

Cochrane Review Exercise therapy for CFS
It is 5 years since Cochrane published the 2019 version of the Larun et al review on 2nd October 2019, and set up a process intended to produce an updated review in two years.
There has been no substantive response from Cochrane to Science for ME letters, complaints or the petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" which remains open. The latest petition update marks the 5th anniversary and lists 6 broken promises, including no updates on the new review since December 2023.
Petition | Petition update | Thread

UK APPG The All Party Parliamentary Group for ME/CFS
The MEA and AfME expect to provide joint secretriat for a new APPG for the newly elected parliament. People in the UK are encouraged to contact their MP to suggest they join the APPG which needs a minimum of 20 members.
MEA article | AfME article | Thread

UK ME Association Recognise ME – Raising Awareness in GP Practices
A six month awareness campaign distributing posters, leaflets and screen adverts for display in GP surgeries.
Article | Thread

The Times letters Specialist ME care - Professor Baroness Finlay of Llandaff and Dr Peter Barry.
The chair and vice chair of the 2021 NICE ME/CFS guideline respond to the Times article, "NHS bosses reject calls for specialist ME care".
"We have been deeply disappointed that the guideline recommendations have not been implemented by those commissioning clinical services, and hope that the coroner's report will lead to much needed change".
Thread with copy of letter
ME Guidelines - Dr Charles Shepherd reiterates the lack of implemention of NICE, and says the DHSC delivery plan must include an audit of all health trusts' provision for severe and very severe ME/CFS.
Thread with copy of letter

BBC Breakfast TV Interview with Dr Binita Kane and Sarah Boothby about Severe ME/CFS and doctors who have had no training not understanding or listening to severely ill patients with ME/CFS.
Video | Thread

Essay The Dilemma of Caring and Doing Research for Severe ME/CFS Patients
A well written piece by Christian Kull based on the experience of trying to get care for his son: "Patients are torn between wanting to learn more about their condition, seeing more experts, getting more medical attention… and a legitimate fear of the consequences. They don’t have the energy to bang on the doors of doctors to demand more help, and often cannot afford the after-effects of doctors’ attention and ministrations."
The article is included in a Health Rising blog titled: "The “Elephant in the Room” Awakens: The Severely Ill with ME/CFS After Maeve’s Tragic Death" by Cort Johnson
Thread with essay

tvo today Has Everyone Forgotten About COVID?
An informative panel discussion from Canadian TV on the pandemic and risks of long Covid with Isaac Bogoch, Dawn Bowdish and Kwame McKenzie.
Full program l Thread

NEJM Intention to treat - What Exactly Is Long Covid?
Good podcast presenting two cases of patients with long Covid and a discussion with president of the Longhauler Advocacy Project Karyn Bishop and Dr. Wesley Ely. Dr. Ely calls long Covid a public health nightmare and says parts of the disease has a lot to do with the symptoms of ME/CFS.
Podcast and transcript l Thread

The Guardian Stuart Murdoch: 'I feel like this book will be the Trainspotting of ME'
Interview with musician and author Stuart Murdoch, who has lived with ME since the late 80's, about his autobiographical novel "Nobody's Empire".
Article l Thread

inews My sporty son is bedbound with long Covid - nearly every doctor let him down
On Long Covid in children, the lack of care and the lack of strategy to protect them. Dr. Nigel Speight, consultant paediatrician with long experience with ME and now LC says: "GPs tend to lack confidence to get off the fence with long Covid, and they depend on specialists. But with children, even paediatricians sit on the fence and can't say what it is".
Article l Thread
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In memory

Tinu Abayomi-Paul
Tinu Abayomi-Paul has died. In an Instagram announcement of her death she is described as a "Beloved daughter, granddaughter, aunt, cousin, friend, writer, and activist". She was an advocate and volunteer for black women and disabled people. She also fought for public health policies for people who are high risk for Covid. She suffered from cancer, Long Covid and ME/CFS. The Sick Times has written the article: "Tinu Abayomi-Paul, writer, disability advocate, and person with Long COVID, dies at 52" about her. Family and friends are fundraising for her funeral and for other costs.
Article l Fundraising l Thread (members only)
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Crowdfunding

Trial by Error October Crowdfunding Campaign
New round of crowdfunding to support David Tuller's important work on reporting on ME, ME/CFS, Long Covid, and "Medically Unexplained Symptoms". The goal is to reach $67,000 on UC Berkeley's platform by the end of October to secure Tuller's position for another six months.
Crowdfunding l Thread
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Useful resources

Bateman Horne Center Life with a Low Battery: Living with ME/CFS
A short introduction video about ME/CFS. From the presentation: "Join Mito, the newest member of the Bateman Horne Center, as she takes you on a journey to understand Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using an analogy we can all relate to: your cell phone's battery." The video has different versions to accommodate for sensory needs.
Video (Full color, with music) l Thread
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Research news and commentary

USA CDC
"NIH's MapMECFS newsletter stated that the clinical data and biospecimens from CDC's Multi-Site Clinical Assessment of ME/CFS (MCAM) study are now available on mapMECFS and searchMECFS... The MCAM study was conducted between 2012 and 2020 at seven ME/CFS specialty clinical sites across the United States. The data from clinical assessments and biospecimens are available for 459 individuals with ME/CFS and 343 healthy controls."
Thread with link

USA NIH RECOVER "Researching Covid to Enhance Recovery–Treating Long Covid (RECOVER-TLC) is an FNIH initiative led by the National Institute of Allergy and Infectious Diseases (NIAID)... As an important first step, we are inviting the community to help identify promising therapeutic approaches."
Article with link for submitting suggestions | Thread
Workshop videos
The Recover-TLC Workshop (September 23-25) is now on YouTube. It's divided into 43 videos.
Videos | Thread

The Sick Times This journalist-founded website covering Long Covid has launched a podcast titled "Still Here". In the pilot episode "co-hosts Miles Griffis and Betsy Ladyzhets talk with podcast producer James Salanga about the latest COVID-19 numbers. Engagement editor Heather Hogan joins James, Miles, and Betsy to recap the NIH RECOVER-TLC meeting from last week. And in research, a hopeful update about a nasal spray effective at blocking respiratory viruses — including COVID-19."
Podcast and transcript l Thread

Netherlands
The blog ME Centraal is asking is asking people to send in questions for an interview with researcher Ruud Raijmakers who manages one of the ME/CFS projects at the NMCB consortium.
Article | Thread

Boston Globe For COVID 'long haulers', glimmers of good news
On Dr. David Systrom's work at Brigham and Women's Hospital. "A growing body of research suggests that both long COVID and chronic fatigue are post-viral syndromes that result in chronic, low-grade inflammation that can damage healthy tissue and, in some cases, the production of auto-antibodies that can attack it. Systrom and others have begun to catalog the scope of the microscopic carnage caused by the immune system's friendly fire."
Article (archived) l Thread

Nature How long COVID could lift the fog on neurocognitive disorders, by Michael J. Peluso and E. Wesley Ely
"We serve as co-investigators on a soon-to-launch National Institute on Aging-funded phase III trial to test whether baricitinib, an immune-modulating medication, can improve symptoms of patients with ADRD from long COVID. We hope that this and similar work will open the door for studies of other infection-associated chronic conditions, including myalgic encephalomyelitis/chronic fatigue syndrome and post-treatment Lyme disease."
Article l Thread

Discrepancies in 2-day exercise studies
In a new blog post ME/CFS Skeptic looks at previous studies on 2-day exercise testing in ME/CFS. Most of the studies are very small and several show various discrepancies (e.g. data that looks like an error).
Article | Thread
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Go to the next post for part 2 on research.

 

Week beginning 30th September 2024

Part 2 of 2

Research

ME/CFS research

Medical Hypotheses
Chronic fatigue syndrome and multiple sclerosis have reduced craniospinal compliance and dilated pressurized bridging cortical veins - G & A Bateman
The authors speculate that findings about cortical veins in MS may also be true for ME/CFS, citing two case studies.
Article | Thread

BMC Immunology
Review: Autoimmunity’s enigmatic role: exploring the connection with ME/CFS - Batham, Marshall-Gradisnik et al
The authors reviewed 10 studies and found "highlight inconsistent and insufficient evidence to classify ME/CFS as an autoimmune disease".
Article | Thread

Research Methods & Reporting
Recommendations on recording harms in randomised controlled trials of behaviour change interventions - Papaioannou et al.
The processes and definitions originally designed to record harms within drug trials are typically followed to record harms in trials of behaviour change interventions owing to the lack of alternative guidance. Therefore, important harms could be missed in the evaluations of behaviour change interventions.
Article | Thread

The European Society of Medicine
The impact of COVID-19 on the understanding, management and treatment of post-viral conditions - Tate et al.
The authors write that: "from over 775 million worldwide COVID-19 infections reported to date there has arisen an estimated 60 million cases of Long COVID. Long COVID is a hetergeneous condition with ~50% having a classic Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-like syndrome."
Article | Thread


Long Covid research

Nanoscale
Cell invasive amyloid assemblies from SARS-CoV-2 peptides can form multiple polymorphs with varying neurotoxicity — Oana Sanislav et al.
"We show, for the first time, direct evidence of cellular uptake of viral amyloids into neuronal cells, further supporting the hypothesis that some of the neurological symptoms of COVID-19 and PASC may possess a neurotoxic amyloid aetiology."
Article | Thread

Viruses
Type I Interferonopathy among Non-Elderly Female Patients with Post-Acute Sequelae of COVID-19 — Xu and Qin
"In our study, increased expression of common [interferon stimulated genes] has been identified in most peripheral monocyte subsets and other major immune cells from non-elderly female PASC patients, suggesting the crucial role of uncontrolled type I IFN signaling and/or type I interferonopathy in PASC."
Article | Thread

Infection
No reduced serum serotonin levels in patients with post-acute sequelae of COVID-19 — Mathé et al.
"The present study could not confirm previously described differences in peripheral serotonin levels between PASC patients and healthy control subjects. We found no correlation of serotonin levels with the severity of PASC-associated fatigue or with the severity of depressive symptoms."
Article | Thread

Nature Scientific Reports
Modeling the burden of long COVID in California with quality adjusted life-years (QALYS) — Zhu et al.
"An age and variant-specific approach was used to estimate the burden of long COVID in California using modeling methods. Total and severity specific burden was unequal across age groups; the highest cumulative and per capita QALY burden was in adults 18–49"
Article | Thread

Occupational and Environmental Medicine
Post COVID-19 syndrome among 5248 healthcare workers in England: longitudinal findings from NHS CHECK — Brendan Dempsey et al.
"The difference between the number of HCWs reporting symptoms consistent with PCS and those reporting a formal diagnosis of LC or PCS is striking."
Article | Thread

JAMA Network Open
Lithium Aspartate for Long COVID Fatigue and Cognitive Dysfunction: A Randomized Clinical Trial — Thomas Guttuso et al.
"In this RCT, therapy with lithium aspartate, 10 to 15 mg/d, was ineffective for neurologic PCC fatigue and cognitive dysfunction."
Article | Thread

Journal of Rehabilitation Medicine - Clinical Communications
Follow-up of patients with post covid-19 condition after a multidisciplinary team assessment: a pilot study — Alexander Wigge et al.
"This study showed no statistically significant improvements in PCC following multidisciplinary team assessment and a rehabilitation plan."
Article | Thread
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