News in Brief - June 2023

This thread has a Science for ME 'News in Brief' post for each week in June 2023 by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.

 

Week beginning 29th May 2023

News, advocacy and articles

UK Action for ME FOI Report reveals shocking lack of specialist care
The report is titled: "Patchy, Misunderstood and Overlooked - Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report"
A survey of English Health trusts and Integrated Care Boards reveals that much of England has no specialist ME/CFS service, and, when provided, only a minority is NICE compliant. Many organisations asked either didn't respond, or said it was not their responsibility.
Article | Report | Thread
The Times Thousands of ME patients ‘failed by shockingly poor NHS care’
"National treatment guidelines published two years ago are still not widely implemented, says charity." The article also describes the experience of Karen Gordon who has very severe ME/CFS.
Sonya Chowdhury, head of AfME was also interviewed on Times Radio.
Article | Thread

Video: Professor Brian Hughes at a Hope 4 ME & Fibro NI conference.
"The title of my lecture was Getting it Right: Addressing Myths about the 2021 NICE Guideline for ME/CFS. I outlined eight pieces of misinformation regarding the new guideline (and about ME/CFS more generally) that are currently being pushed from certain quarters." Duration 34 minutes.
Blog | Video | Thread

Solve M.E. emailed a summary for Advocacy Week 2023. This year they had 222 congressional meetings and 354 attendees. 47 states plus Washington, DC, were represented. For more details, including videos from Advocacy Week, see thread. There's also a survey if you'd like to share any thoughts on Advocacy Week (requires Google login).
Survey | Thread

Solve M.E. sent a reminder that it's not too late for US citizens to contact their members of Congress to ask them to support the CARE for Long Covid Act. They have an automated tool that can help.
Contact Congress | Thread

Aotearoa/New Zealand ME Support (formally ME Auckland) posted a presentation titled "Support for Long Covid and ME/CFS". They aim to provide medical information, emotional support and advocacy and support groups to people with ME/CFS, Long Covid and related conditions such as fibromyalgia across New Zealand.
PDF | Thread

Aotearoa/New Zealand Long Covid Support Aotearoa launches website. Built by patients to communicate their experience of the disease, its symptoms and their management. Planned links to resources as they develop. Includes a registry of patients to attempt to inform on prevalence.
Link | Thread

Trial by Error by David Tuller
David Tuller with two interesting video conversations:
Psychologist Brian Hughes Discusses His New Book, "A Conceptual History of Psychology"
Interview l Thread
Dr Binita Kane on Kids with Long Covid
Interview l Thread

Bateman Horne Center "How the Basics of PT & OT Can Help People with ME/CFS"
A blog post on how physical and occupational therapists can help patients.
Blog | Thread

Ireland
ME Advocates Ireland has published a 64-page document titled 'Myalgic Encephalomyelitis (ME) Diagnosis & Management Information for Doctors & Healthcare Providers'.
Document | Thread

The Guardian Immunologist Akiko Iwasaki: "We are not done with Covid, not even close"
Interview with Long Covid researcher Professor Iwasaki who was recently awarded the Else Kröner Fresenius Prize for medical Research. She talks about her work and challenges with being a woman of colour in science. She says she's always thinking of how insights from Long Covid can help people with ME/CFS and other post-acute phases of infection.
Article l Thread

The Washington Post For covid long-haulers, the pandemic is far from over
".. fears have crept in that long-haulers will face a fate akin to that of people with chronic fatigue syndrome - marginalized and misunderstood, with a lack of medical evidence to explain or treat their symptoms and little impetus for researchers to dedicate their careers to such confounding cases"
Article l Thread
.................

Research news and commentary

ME/CFS research foundation
All presentations for the ME/CFS Symposium 2023 as well as for the professional conference 2023 at the Charité are now available online, on the website of the ME/CFS research foundation.
Presentations | Thread

Invest in ME Research Conference was on 2nd June. Some attendees live tweeted about the talks, including by Ron Davis and Bhupesh Prusty.
Thread with links

Long Covid Sessions podcast "Biomarker breakthrough"
Bhupesh Prusty, molecular virologist at the University of Wuerzburg, discusses his research on ME/CFS and Long Covid. He has submitted a research paper for review. Duration 1:14 hours.
Article with podcast | Thread

UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
.................

Research

ME/CFS research

Frontiers in Pediatrics
Comparison of a 20 degree and 70 degree tilt test in adolescent ME/CFS patients - van Campen et al.
Adolescents with ME/CFS were studied, 42 during a 20 degree and 41 during a 70 degree test. "A 20 degree tilt in young ME/CFS patients resulted in a CBF reduction comparable to that in adult patients during a 70 degree test. The lower tilt angle provoked less POTS, emphasizing the importance of using the 70 degree angle for that diagnosis."
Paper | Thread

Frontiers in Medicine
Review article: ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature - Komaroff & Lipkin
"In this review, we first compare the symptoms of ME/CFS and Long COVID, noting the considerable similarities and the few differences. We then compare in extensive detail the underlying pathophysiology of these two conditions, focusing on abnormalities of the central and autonomic nervous system, lungs, heart, vasculature, immune system, gut microbiome, energy metabolism and redox balance."
Article | Thread

Journal of Neuroimaging
Free-water-corrected diffusion and adrenergic/muscarinic antibodies in ME/CFS - Kimura et al.
"Free-water-corrected diffusion tensor imaging (FW-DTI), a new analysis method for diffusion MRI, can indicate neuroinflammation and degeneration." From imaging 58 people with ME/CFS, the authors conclude: "These results demonstrate the value of using DTI to assess the microstructure of ME/CFS. The abnormalities of right frontal operculum may be a diagnostic marker for ME/CFS."
Paper | Thread

World Journal of Neurology
Alcohol intolerance and myalgic encephalomyelitis/chronic fatigue syndrome - Maciuch & Jason
To overcome previous methodologic problems, participants were asked whether they have avoided alcohol in the past 6 mo, and if they had, how severe their alcohol intolerance would be if they were to drink alcohol. Results showed that ME/CFS patients are more likely to experience alcohol intolerance.
Article | Thread

Psychology & Health
‘Welcome to my world’: a thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown - Porch et al.
The authors conducted 30 interviews to explore the experiences of people with ME/CFS during the first UK COVID-19 lockdown period.
Article | Thread

Biomedicines
Influence of Chronic Fatigue Syndrome Codiagnosis on the Relationship between Perceived and Objective Psychoneuro-Immunoendocrine Disorders in Women with Fibromyalgia - Otero et al
"FM patients with a previous CFS diagnosis had lower systemic levels of IL-8, cortisol, oxytocin, and higher levels of adrenaline and serotonin than FM patients without diagnosed CFS." The authors conclude that "while perceived health parameters do not detect differences, when objective neuroimmunoendocrine parameters related to stress, inflammation, pain, and fatigue are used, people with CFS could be overdiagnosed with FM."
Paper | Thread

Annals of Medicine and Surgery
Review: Association of multiple sclerosis with chronic fatigue syndrome, restless leg syndrome, and various sleep disorders along with the recent updates - Prajjwal et al.
The authors review neuroimaging findings and genetic susceptibility for ME/CFS and MS.
Article | Thread

Chronic Illness
Service users’ and parents/carers’ experiences of a paediatric chronic fatigue service: A service evaluation - Hartley & Purrington
In this study, 25 children and young people and 25 parents and carers completed a postal survey exploring experiences of a paediatric chronic fatigue service.
Article | Thread

La Revue de Médecine Interne
Chronic fatigue: What investigations? And what for?
This French article questions the validity of CFS and proposes a cardiorespiratory exercise test as a prerequisite for personalized retraining or adapted physical activity (APA), which, accord to the authors, are the treatments of choice for chronic fatigue.
Article | Thread

Icahn School of Medicine
Thesis: Identifying demographic trends in ME/CFS patients presenting with Fibromyalgia as a comorbidity in the nationwide inpatient sample database - Murali.
"The Fibromyalgia group had lower in-hospital mortality, higher proportion of patients discharged home or to short-term hospitals, shorter lengths of stay, and lower hospital charges."
Thesis | Thread

Long Covid research

BMJ
Recovery and symptom trajectories up to two years after SARS-CoV-2 infection: population based, longitudinal cohort study — Tala Ballouz et al.
“Up to 18% of individuals who were not vaccinated before infection had post-covid-19 condition up to two years after infection, with evidence of excess symptom risk compared with controls.“
Article | Thread

Journal of Clinical Medicine
Long-Term Adverse Effects of Mild COVID-19 Disease on Arterial Stiffness, and Systemic and Central Hemodynamics: A Pre-Post Study — Podrug et al.
“The finding that the longer the period from COVID-19 infection the worse the vascular impairment was surprising, as we expected inflammation burden associated with COVID-19 to decrease with time.”
Article | Thread
...................

S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube

 

Week beginning 5th June 2023

News, advocacy and articles

UK DecodeME A reminder to spread the word about this important genetic study which needs many more participants in the UK with a diagnosis of ME/CFS.
Spread the word | Take part | Thread

USA The CDC posted information from the ME/CFS Stakeholder Engagement and Communication (SEC) Call held on May 17. There's a transcript of the CDC program updates and a slideshow titled, "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)-like illness following COVID-19 in a large integrated health system." Video recording is "coming soon."
CDC website | Thread

USA - NIH A recording of the NIH ME/CFS Advocacy Call from May 1, 2023 is now available.
Video | Transcript | Thread

The Massachusetts ME/CFS and FM Association has posted a recording of their May 24 webinar, "Wearable technology with Harry Leeming of Visible"
Video | Thread

Netherlands The NKCV (Nederlands "Kenniscentrum" voor Chronische Vermoeidheid) has been ordered by the Advertisement Code Commission to change their misleading text about CBT for ME/CFS being safe. (see also David Tuller's article below)
Article | Thread

American Psychiatric Association Emeritus Professor Michael Sharpe, giving his lecture on receipt of an award, repeats his unfounded and long held belief that ME/CFS is caused by "a “vicious circle” of fatigue, fear of fatigue, avoidance of activity, disability, and physiological changes leading to more fatigue.", and his incorrect claim that CBT is an effective treatment.
Article | Thread

Serbia An interview has been published with Dr. Vesna Ikonić Marinković, a pediatrician from Serbia, who has recently started suffering from ME/CFS, probably after a covid infection.
Article | Thread

Aotearoa/New Zealand ANZMES releases two new resources to guide assessment and management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and long COVID in primary care.
Resources | Thread

EMERGE Australia The theme for this year’s awareness week was “Don’t push harder. Stop. Rest. Pace”. Recordings and slides from presentations are available.
Article with links | Thread

Sweden Article about Long Covid in the newspaper SVD. Professor Jonas Bergquist is interviewed on his research and says there are both similarities and differences in inflammatory markers in patients with Long Covid and patients with ME.
Article (paywalled) l Thread

ME/CFS Medical Education Campaign A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS.
A summary of a conversation with Sarah Boothby who tells the devastating story of the medical neglect her daughter Maeve suffered as a very severe ME patient in UK.
Interview l Thread

Ground Truths by Eric Topol Hannah Davis: A 360° on Long Covid
An interesting audio conversation between Eric Topol and Hannah Davis - primary author of their Nature review on Long Covid and co-founder of the Patient-Led Research Collaborative. Includes a transcript.
Interview l Thread
..........

Trial by Error by David Tuller

"A Letter Regarding Inflated Prevalence Rates for Functional Neurological Disorder"
David Tuller has sent a letter to the editor of the journal Neuroimage: Clinical to ask for a correction of a claim that FND is the 2nd most common presentation at neurology clinics. The letter is co-signed by 9 colleagues of Dr Tuller.
Letter l Thread

"Claim that CBT Is Safe is "Misleading," Says Dutch Ad Group"
"In a recent decision, the Advertising Code Foundation in the Netherlands has criticized as “misleading” a statement on the website of the Knowledge Center for Chronic Fatigue (NKCV) touting its treatment approach as “not harmful.” The decision is something of a slap at the NKCV and its co-leader, Professor Hans Knoop, a psychologist and a member of the Dutch wing of the CBT/GET ideological brigades."
Article l Thread

"Michael Alenyikov on ME and the Writing Life"
Michael Alenyikov was the first person Tuller knew with ME. Michael has been sick since 1991, but has managed to publish two books of short stories. His first book is titled "Ivan and Misha", which took ten years to write and won several local awards. He tells of his life and his writing.
Article l Thread
...........

Research

ME/CFS research

BMJ Annals of Rheumatic Diseases
Inflammation-induced pain and fatigue in fibromyalgia and ME/CFS and role of variant connective tissue - Eccles et al
48 with ME/CFS and/or FM and 22 matched controls. Placebo controlled (saline injection) inflammatory challenge (typhoid vaccination). "Induced pain was independently predicted by level of IL-6 induced by inflammatory challenge [...] as was induced fatigue".
Paper | Thread

Preprint
Review article: Altered Lipid, Energy Metabolism and Oxidative Stress Are Common Features in a Range of Chronic Conditions - Morten et al
"ME/CFS, GWS and Fibromyalgia are three conditions that could benefit from a plasma/tissue metabolomics analysis, allowing a greater understanding of their aetiology and identify common pathways. An analysis of the literature in these conditions reveals alterations within pathways associated with energy and lipid metabolism with alterations in key metabolites associated with elevated oxidative stress."
Preprint | Thread

Sensors
Major Depressive Disorder and Chronic Fatigue Syndrome Show Characteristic Heart Rate Variability Profiles Reflecting Autonomic Dysregulations: Differentiation by Linear Discriminant Analysis - Shinba et al.
The results indicate that an overall heart rate variability reduction at rest may support a diagnosis of major depressive disorder. High frequency reduction was found in CFS, but with a lesser severity.
Article | Thread

Long Covid research

Nature Communications
Persistent serum protein signatures define an inflammatory subcategory of long COVID — Talla et al.
“Our analysis indicates heterogeneity in PASC and identified subsets with distinct signatures of persistent inflammation. Type II interferon signaling and canonical NF-κB signaling (particularly associated with TNF), appear to be the most differentially enriched signaling pathways, distinguishing a group of patients characterized also by a persistent neutrophil activation signature.”
Article | Thread

Journal of Thrombosis and Haemostasis
NETosis induction reflects COVID-19 severity and long COVID: insights from a 2-center patient cohort study in Israel — Nitzan Krinsky et al.
“This study evaluated immunothrombosis markers in a comprehensive cohort of acute and recovered COVID-19 patients, including the association of NETs with long COVID.” “Patients with long COVID maintained higher NETosis induction, but not NET fragments, compared to recovered convalescent patients.”
Article | Thread

Infection Control & Hospital Epidemiology
Risk factors for long coronavirus disease 2019 (long COVID) among healthcare personnel, Brazil, 2020–2022 — Alexandre R. Marra et al.
“We conducted a case–control study among HCP who had confirmed symptomatic COVID-19 working in a Brazilian healthcare system between March 1, 2020, and July 15, 2022.” “Of 7,051 HCP diagnosed with COVID-19, 1,933 (27.4%) who developed long COVID were compared to 5,118 (72.6%) who did not. The majority of those with long COVID (51.8%) had 3 or more symptoms.”
Article | Thread

Journal of Medical Virology
A systematic review and meta-analysis of long-term sequelae of COVID-19 2-year after SARS-CoV-2 infection: A call to action for neurological, physical, and psychological sciences — Masoud Rahmati et al.
“Our findings suggest that 2-year after recovery from SARS-CoV-2 infection, 41.7% of survivors still suffer from either neurological, physical, and psychological sequela. These findings indicate that there is an urgent need to preclude persistent or emerging long-term sequelae and provide intervention strategies to reduce the risk of long COVID.”
Article | Thread

Journal of Translational Medicine
The relevance of pacing strategies in managing symptoms of post-COVID-19 syndrome — Ghali et al.
Retrospective review. “Our findings demonstrated that pacing is effective in the management of patients with PCS, and that high levels of adherence to pacing are associated with better outcomes.”
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"
This 2-day event (June 29-30), which will be both virtual and in-person (Washington, DC), will discuss common factors in infection-associated chronic illnesses.
Announcement | Thread

Bateman Horne Center - Free Online Support Group
Advanced registration required
Topic: When the Patient is the Caregiver
Tuesday, June 20, 1 - 2 PM Mountain Time
Announcement | Thread

Bateman Horne Center - Lunch and Learn
Topic: The Things I’ve Learned and the Ways I’ve Grown With This Condition
Thursday, June 15, 11:30 AM - 1:30 PM Mountain Time
Announcement | Thread

USA Movie screening: "Movie About M.E."
June 16, 5-7 PM, at La Lieff Wines in Santa Barbara, California.
This film "follows the One Name Campaign to create one unifying name for related illnesses." Speakers will "share insights on the future of Long Covid and other related diseases."
Announcement | Thread

NIH announced two ME/CFS events planned for December: NIH ME/CFS Young and Early Investigators Conference (December 11) and Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID (December 12-13). Details are still to come.
NIH Events | Thread
............

S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube

 

Week beginning 12th June 2023

News, advocacy and articles

Australia Queensland scientists push for new national treatment guidelines for chronic fatigue syndrome
Professor Sonya Marshall-Gradisnik joined politicians, ME/CFS patient representatives and other researchers from across the country at Parliament House at the launch of the parliamentary friends of ME/CFS. They discussed the need for new national ME/CFS guidelines. Current GP guidelines recommend CBT/GET.
Article | Emerge Twitter thread | Thread

UK honours - An MBE has been awarded to "Mrs Joan Elizabeth McParland, For services to People with Myalgic Encephalomyelitis & to their Families & Carers in Northern Ireland". Congratulations and thanks to Joan for her work.
Honours list | Thread

The Long COVID Alliance has announced a new initiative, called the Infection Associated Chronic Conditions Patient Advocacy Coalition (IACC PAC), in order to strengthen cross-sector partnerships among patient disease groups and identify common objectives and actionable steps.
Announcement | Thread

Norway A journal for journalists has written a series of articles about the ME debate and some journalists' experiences from covering ME. One of the journalists, Sigrid Sollund, says: "- Seen from the outside, it can seem as if people on one side of the conflict experience the so-called ME activists as an influential and threatening group, while those on the other side, on the contrary, feel that they belong to a powerless, exposed and vulnerable group."
The assistant general secretary from the Norwegian ME Association was also interviewed, saying it's important to do proper research before writing about this topic and that it's more important to cover the situation for ME patients, rather than the debate on disease mechanisms. Patient advocate Nina E. Steinkopf wrote a blog post sharing the backlash she has endured from writing about ME.
Thread with summary and links

USA CDC Evaluating and Supporting Patients with Long COVID in Returning to Work
A problematic webinar where GET was presented as pacing and with claims that the benefits of working with Long Covid outweighs the risks.
Webinar l Thread

UK Society of Occupational Medicine Sir Simon Wessely has received Honorary Membership presented by Dr Shriti Pattani, SOM President. Tweeters replying politely pointing out the many problems with Wessely's work on ME/CFS and other diseases have been blocked by the Society of Occupational Medicine.
Tweets | Thread
...............

Research news

Video series Professor Carmen Scheibenbogen is interviewed by Gez Medinger and Dr Asad Khan about her research on Long COVID and ME/CFS.
The Two Types of Long Covid (and the Role of Autoimmunity)
Video 12 minutes
Treating Autoimmunity in Long Covid & The Role of Viral Persistence
Video 13 minutes
How Long Will Treatment Trials Take? And Why is Research so Hard?
Video 15 minutes
Thread

UK DecodeME The latest email circulated to supporters of the ME Association says: "The ME Association is proud to support DecodeME. It is a very important study that will examine people's DNA and could reveal why ME/CFS develops in certain people."
Spread the word | Take part | Thread
Edinburgh Open Research
Data Dashboards - The advantages of having access to data insights when conducting large scale citizen science 'direct to public' research projects - David Perry
"DecodeME is a research project that aims to find the genetic causes of why people become ill with [ME/CFS]. Participants are able to take part from the comfort of their home without having to first visit a clinic. [...] Data workflows and automation are critical when operating at such scale. Decision making and progress are best underpinned by data driven insights from the live source data." Video and slides of the talk are now available. Duration 19 minutes.
Talk | Slides | Thread

IACFS/ME Virtual Journal Club A recording of the May 1 session, with a presentation by Matthew Durstenfeld about using CPET (Cardiopulmonary Exercise Testing) in Long Covid, is now available.
Video | Thread
...............

Research

ME/CFS research

Gene
A Unique Circular RNA Expression Pattern in the Peripheral Blood of ME/CFS Patients - Cheng et al
This study "investigated the expression profiles of circRNAs, comparing ME/CFS patients and controls before and after two sessions of cardiopulmonary exercise longitudinally."
"14 circRNAs were highly expressed in ME/CFS patients but absent in controls throughout the exercise study, indicating a unique molecular signature specific to ME/CFS patients and providing potential diagnostic biomarkers for the disease."
Paper | Thread

International Journal of Molecular Sciences
Sex-Dependent Transcriptional Changes in Response to Stress in Patients with ME/CFS: A Pilot Study - Nathanson, Klimas et al
Evaluated differential gene expression by RNA-sequencing before and after a PEM inducing exercise challenge in 33 ME/CFS and 34 controls.
"The functional pathways and differentially expressed genes highlighted in this pilot project provide insight into the sex-specific pathophysiology of ME/CFS."
Paper | Thread

Frontiers in Medicine
Perspective article: Fighting Post-COVID and ME/CFS – development of curative therapies - Scheibenbogen et al
Noting the overlap in symptoms and possible mechanisms between ME/CFS and Post-COVID, the authors conclude: "To accelerate the development of therapies, we propose evaluating drugs targeting different mechanisms in clinical trial networks using harmonized diagnostic and outcome criteria and subgrouping patients based on a thorough clinical profiling including a comprehensive diagnostic and biomarker phenotyping." (see also videos listed above)
Article | Thread

International Journal of Qualitative Studies on Health and Well-being
Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome - Bakken et al.
The authors conducted interviews with 14 patients who recovered from ME/CFS. Patients were recruited with the help of Recovery Norway. Forum members have criticised the study for promoting the Lightning process.
Article | Thread

Long Covid research

eLife
Prolonged T-cell activation and long COVID symptoms independently associate with severe COVID-19 at 3 months — Marianna Santopaolo et al.
“We assessed immune activation at 3-12 months post hospital admission in 187 samples from 63 patients with mild, moderate or severe disease and investigated whether it associates with long COVID.” “Our data suggests that long COVID and persistent immune activation may correlate independently with severe disease.”
Article | Thread

Journal of Translational Medicine
Plasma proteome of Long-COVID patients indicates HIF-mediated vasculo-proliferative disease with impact on brain and heart function — Iosef et al.
“Plasma proteome from Long-COVID outpatients was analyzed in comparison to matched acutely ill COVID-19 (mild and severe) inpatients and healthy control subjects.” “Differential protein expression and network analysis showed disruption of tissue recovery mechanisms that could be directly related to concerted HIF, TNFα and VEGFA signaling actions linked by ANGPT1.”
Article | Thread

Journal of Clinical Medicine
Physical Health-Related Quality of Life Improves over Time in Post-COVID-19 Patients: An Exploratory Prospective Study — Malesevic et al.
Observational study of follow-up with no treatment. “The majority of patients significantly improved in EQ-5D-5L health dimensions of mobility, usual activities, pain and anxiety. Furthermore, according to the SF-36, patients showed clinically relevant improvements in physical health, whereas no significant change was found regarding mental health.”
Article | Thread

Canadian Medical Association Open Access Journal
“We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms — Donna Goodridge et al.
“We conducted a qualitative study, using interpretive description, of the lived experiences of adults experiencing persistent post-COVID-19 symptoms.” “Four overarching themes were identified: the unique burdens of living with persistent post-COVID-19 symptoms; the complex nature of patient work in managing symptoms and seeking treatment during recovery; erosion of trust in the health care system; and the process of adaptation, which included taking charge and transformed self-identity.”
Article | Thread
..............

S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube

 

Week beginning 19th June 2023

News, advocacy and resources

USA - Bateman Horne Center "Push/Crash Cycle and Triggers in ME/CFS & Long Covid"
This handout, part of their medical education series, talks about different triggers for PEM/PESE (post-exertional malaise/post-exertional symptom exacerbation) and that repeated PEM/PESE episodes can make patients worse.
Document | Thread

Aotearoa/New Zealand "Post-Exertional Malaise in ME/CFS - Management and Supports - Webinar for Health Professionals"
Dr Cathy Stephenson provides a 24 minute overview of PEM: its symptomatic features, triggers and management.
YouTube | Thread

UK DecodeME is running advertisements in the media and on social media to attract more participants to this genetic and questionnaire study of adults with an ME/CFS diagnosis in the UK. Although many thousands have already participated, many more are still needed.
Take part | Share | Thread

UK Independent Sage video on Long Covid, including UK and US statistics, and an overview of government and health services recognition and provision in 12 countries. The general picture is of poor understanding, psychologisation, lack of medical education, and patchy provision, mostly based on rehabilitation and psychological therapy and with lack of understanding of PEM. Duration 1 hour.
Video | Thread

USA The Department of Health and Human Services (HHS) issued an advisory on "Mental Health Symptoms and Conditions Related to Long Covid."
Announcement | Thread

USA Solve ME Webinar - Caregiver Corner: Resilience Tools for Difficult Times
June 26 @ 1:00 pm - 2:00 pm PDT. Forum discussion has raised concerns about the choice of speaker.
Thread
............

Research

ME/CFS research

International Journal of Molecular Sciences
Circulating miRNAs Expression in ME/CFS - Soffritti et al
"this study aimed at determining the role of eight miRNAs, which were selected for their previous association with ME/CFS." Plasma tested from 40 ME/CFS patients and 20 healthy controls found 6 of the 8 upregulated and 1 downregulated in ME/CFS compared to controls.
"MiRNA levels directly correlated with disease severity, whereas no significant correlations were observed with the plasma levels of seven pro-inflammatory cytokines or with the presence/load of HHV-6A/6B genome".
Paper | Thread

Frontiers in Medicine
Post-COVID sequalae effect in chronic fatigue syndrome: SARS-CoV-2 triggers latent adenovirus in the oral mucosa - Apostolou et al
"We conclude that COVID-19 triggered reactivation of dormant HAdV in the oral mucosa of chronic fatigue patients indicating an exhausted dysfunctional antiviral immune response in ME/CFS, allowing reactivation of adenovirus upon stress encounter such as COVID-19."
Article | Thread

Frontiers in Microbiology
Causal Effects between Gut Microbiome and ME/CFS: A Two-Sample Mendelian Randomization Study - Gang He et al.
Gut microbiota genetic data from the UK biobank was used to compared ME/CFS patients with controls. "This study reveals a causal relationship between genus.paraprevotella, genus.Ruminococcaceae_UCG_014 and ME/CFS, and our findings provide novel insights for further elucidating the developmental mechanisms mediated by the gut microbiota of ME/CFS."
Article | Thread

Journal of Translational Medicine
Comparison of serum acylcarnitine levels in patients with [ME/CFS] and healthy controls: a systematic review and meta-analysis - Jinushi et al.
Data was collated from 7 studies totalling 403 people with ME/CFS. "The patient group had significantly lower serum acylcarnitine levels when compared with the control group."
Article | Thread

Norwegian University of Science and Technology
A thesis on immune differences in Chronic Fatigue Syndrome, Fibromyalgia and healthy controls - Nina Groven
Plasma levels of cytokines, chemochines and kynurenine metabolites found differences between patients and controls, but not between CFS and FM.
"Symptoms of anxiety and depression were not associated with any of the immune markers studied".
Thesis | Thread

International Journal of Adolescent Medicine and Health
The role of psychiatry in diagnosis and treatment of paediatric chronic fatigue syndrome – a scoping literature review - Dolp et al.
Three researchers from the Department of Psychiatry, at Queen's University in Canada conducted this review on found that "most studies and guidelines did not include any psychiatric involvement in the care of patients with pCFS [paediatric chronic fatigue syndrome].
Article | Thread

Long Covid research

Frontiers in Neuroscience
Altered brain connectivity in Long Covid during cognitive exertion: a pilot study — Barnden et al.
“In this pilot study of brain connectivity in Long Covid, despite limited subject numbers, we have detected significant differences from [healthy controls], mostly in brainstem and salience network connections that are important for the regulation of brain function.”
Article | Thread

Language and Health
Long COVID: The impact on language and cognition — Cummings
“The author has examined the language skills of 110 adults who reported experiencing Long COVID. Among these individuals, 99 adults reported significant cognitive-linguistic difficulties as part of their ongoing COVID symptoms. This article examines these difficulties in detail.”
Article | Thread

MedRxiv (Preprint)
Neurodivergence as a risk factor for Post-Covid-19 Syndrome — Raw et al.
Based on a retrospective study, the authors state that "Higher autistic traits predicted COVID-19 symptoms that lasting more than 12 weeks regardless of formal autism diagnosis."
Article | Thread
..............

S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube

 

Week beginning 26th June 2023

Part 1 of 2

News, articles and advocacy

Sweden A call from a number of specialists and the Swedish patient organisations for Covid, ME, and difficult-to-diagnose-infectious-diseases to invest in and develop specialist care for post-infectious diseases, rather than closing down offers.
Opinion piece l Thread

#MEAction "Bed activism at the Washington Monument & A Politics of Care"
A look back at the Millions Missing 2023 event, written by Ben HsuBorger, U.S. Advocacy Director for MEAction.
Article | Thread

Documentary Living With ME
Thomas McCann is a Graduate of the Edinburgh Napier University BA Journalism Course and has made this 22 minute documentary about ME as his Major Project.
From the presentation: "This documentary brings together the stories of people with ME, their families and those working to better understand the illness".
Documentary l Thread

TCW Money's the motive for calling ME a myth
A second article on ME by Sophie Palmer. This time on "the arguments of those who believe that vested interests have sought to retain the idea of ME as a psychological disorder" with main emphasis on UK and the influence of Professor Simon Wessely.
Article l Thread

Nature Long COVID: answers emerge on how many people get better
It's estimated that 65 million people or more are now living with long COVID. This article summarises current research on prevalence and epidemiologist Tala Ballouz says the chances of recovery are higher during the first year. The article also writes about risk factors and medical treatments or prevention as vaccines, metformin and antivirals.
Article l Thread

Canada CAN-PCC has a survey to help develop "guidelines on post-COVID-19 condition (also known as long COVID)" for those in Canada who are 16 years old or older. The survey should take approximately 10 minutes to complete.
Survey | Thread

USA The Icahn School of Medicine at Mount Sinai is offering an online course called "Long COVID Rehabilitation: A Guide for Health Care Professionals."
Website | Thread

Medscape 3 Years Into Long COVID: Where Do We Go From Here? - Lisa McCorkell, co-founder of the Patient-Led Research Collaborative
"We have reached a new point of crisis in the pandemic. Even though federal health agencies, the White House, and even the World Health Organization have all declared the public health emergency over without implementing any long-term policies that can protect people from COVID and support the most vulnerable, the need for better care, treatment, and support has never been greater."
Article | Thread

MSN
Why Is It So Difficult for Long COVID Patients to Get Diagnosed and Treated?
This article describes the barriers to diagnosis and treatment for Long COVID patients.
Article | Thread

SLATE Is Long COVID Linked to Mental Illness?
A problematic long piece in SLATE by Grace Huckins claiming Long Covid is associated with mental illnesses and that psychological treatments should be pursued. The article has spurred some debate on the forum and on social media.
Article l Thread

USA: Harvard Health Publishing Understanding Chronic Fatigue Syndrome: Unraveling the Complexities of Persistent Tiredness - Robert H. Shmerling, MD
A disappointing mixture of accurate and inaccurate information.
Article | Thread
................

Coming events

IACFSME conference 2023
July 27 - 29, 9 AM - 5 PM, Stony Brook University, NY, USA
Early Bird Registration Rates and Discounted University Housing Extended to July 9. The conference schedule is available with a packed program of speakers and workshops on subjects varying from biomedical research to treatment and Long Covid. In person only, no online attendance.
Website | Thread

ME conference Oct. 11-12th organised by the patient organisations in Sweden, Norway, Finland and Denmark. It takes place in Stockholm, Göteborg and online. Speakers are: Dr Bhupesh K. Prusty, Dr. Eirini Apostolou, Dr Amy Proal, Professor Diane O´Leary, Dr Nigel Speight, Dr Anne Kielland.
More information l Thread
...............

Research news

UK DecodeME Inviting More Participants to Donate DNA
"DecodeME can now invite even more people to donate their DNA. This is because we will apply an additional scientific method to ensure that our genetic findings are due to ME/CFS and not to common co-occurring conditions." This means that some of the people previously told their DNA could not be included will soon receive an invitation by email inviting them to provide a saliva sample for DNA analysis.
"The new plan will make DecodeME more inclusive and more likely to increase its number of discoveries."
Article and audio version | Thread

UK Invest in ME Research A report and 15 videos of the presentations from the international conference on 2nd June are now available on the IiMER website. Topics included biomedical research, Long Covid, severe ME/CFS and treatment.
Website | Thread

Leeds University Postgraduate research studentship: Impaired selective attention as a cognitive and neurophysiological marker of ME/CFS
"The project will use laboratory-based and online computer-based tasks to contrast behavioural and physiological (eye movements and EEG) measures of selective attention during search in individuals with, and without ME/CFS."
Closing date 31st July 2023
Details | Thread

Medpage Today "Stanford Study of Paxlovid for Long COVID Stopped Early"
It's unclear why new enrollment was halted but a Stanford spokesperson said results will be shared as soon as the study is completed.
Article | Thread

Bateman Horne Center "Brain Fog in ME/CFS and Long COVID"
This blog post talks about their research paper, published in Frontiers of Neuroscience, on cognitive impairment in ME/CFS and Long Covid.
Blog | Thread

Trial by Error by David Tuller A Letter Requesting Corrections of Inflated Prevalence Rates in Nine More FND Papers
Dr Tuller and colleagues have asked for a correction of a scientific article which falsely tripled FND prevalence. They are dissatisfied with the author's correction proposal. In a letter to the authors of the article, Dr Tuller lists nine other papers from them in need of similar correction.
Article l Thread
................

For the research section go to the next post.

 

Week beginning 26th June 2023

Part 2 of 2

Research

Biomedical ME/CFS research

Frontiers in Neuroscience
Cognitive impairment in long COVID and short duration ME patients is mediated by orthostatic hemodynamic changes - Vernon et al
256 participants. "Compared to healthy controls, the disease cohorts had significantly lower cognitive efficiency scores immediately following the orthostatic challenge. Cognitive efficiency remained low for the >10 year ME/CFS 2 and 7 days after orthostatic challenge." Other findings relate to pulse pressure and heart rate.
Article | Thread

Journal of Neuroimmunology
Serum from [ME/CFS] patients causes loss of coherence in cellular circadian rhythms - Wei et al
Results of this study using serum from 20 ME/CFS patients with disturbed sleep and matched controls suggest an effect on "circadian rhythm coherence in peripheral cells" but "there was no difference in TGFB1 levels between ME/CFS and control serum indicating the effects of serum on cellular rhythms cannot be explained by levels of this cytokine."
Paper | Thread

Biomolecules
Altered TRPM7-Dependent Calcium Influx in Natural Killer Cells of ME/CFS Patients - du Preez et al
More on NK cells from the Griffiths University team led by Sonya Marshall-Gradisnik. "Findings from this investigation suggest that TRPM7-dependent Ca2+ influx is reduced with agonism and increased with antagonism in ME/CFS patients relative to the age- and sex-matched HCs."
Paper | Thread

MedRxiv preprint
Increased circulating fibronectin, depletion of natural IgM and heightened EBV, HSV-1 reactivation in ME/CFS and long COVID - Liu, Prusty et al
"Here we show antibody response to herpesvirus dUTPases, particularly to that of Epstein-Barr virus (EBV) and HSV-1, increased circulating fibronectin (FN1) levels in serum and depletion of natural IgM against fibronectin ((n)IgM-FN1) are common factors for both severe ME/CFS and long COVID." Other findings relate to mitochondria and immune complexes.
Preprint | Thread

MedRxiv preprint
Comprehensive profiling of the human intestinal DNA virome and prediction of disease-associated bacterial hosts in severe ME/CFS - Carding et al
Several different techniques were used "to analyze the intestinal virome in a small cohort of severely-affected ME/CFS patients and same household healthy controls ...DNA viromes and bacteriomes from ME/CFS and SHHC groups were comparable with no differences in any alpha or beta diversity measures."
Some specific differences were found: "..we identified members of the Anaerotruncus genus interacting with unique viruses present in ME/CFS microbiomes; this may contribute to the GI microbial dysbiosis described in ME/CFS patients."
Preprint | Thread

Other ME/CFS research and commentary

Journal of the Association of Physicians of India
The Hindi Version of International Consensus Criteria: A Cross-cultural Adaptation and Validation Study for Myalgic Encephalomyelitis in Post-COVID Patients - Shah et al.
"This study shows that the ICC-H is a valid and reliable instrument for the assessment of ME. "
Article | Thread

Der Nervenarzt
Die Übersicht zur aktuellen Evidenz ignoriert die aktuelle Evidenz - Jason et al.
Various ME/CFS experts criticise a previous German article by Ludwig et al. in the Nervenartz that suggested ME/CFS should be managed and researched using a biopsychosocial approach. The original authors, Ludwig et al., have responded with their own letter saying that "A science that does not allow contrary opinions abolishes knowledge."
Article | Response | Thread

The Clinical Neuropsychologist
Neuropsychological evaluation of functional cognitive disorder: a narrative review - Silverberg & Rush
"Patients with FCD tend to perform normally on neuropsychological testing or demonstrate relatively weak memory acquisition (e.g. list learning trials) in comparison to strong attention and delayed recall performance"
Article | Thread

Psych
Comparing Frequency and Severity Ratings for ME/CFS versus Controls - Jason et al.
The authors conducted two studies which "provide important psychometric properties that could lead to more reliable and valid assessments of patients with post-viral illnesses."
Article | Thread

Frontiers in Neuroscience
Coaching to Strengthen Critical Success Factors in Integrative Care for Chronic Fatigue Patients: The Patient Needs-Resources Model - Araja et al.
The Latvian research team Modra Murovaska concludes that "coaching may assist patients to identify and prioritize their goals, becoming aware of their personal resources, developing strategies for managing symptoms, and building skills to increase their self-efficacy and active engagement in the treatment process."
Article | Thread

Long Covid research

Nature Scientific Reports
Neuropsychological deficits in patients with persistent COVID-19 symptoms: a systematic review and meta-analysis — Sobrino-Relaño et al.
“The main objective of this systematic review and meta‐analysis was to objectify the persistent COVID‐19 cognitive deficits after acute phase of infection and to summarize the existing evidence.” “The results showed that individuals who had recovered from COVID‐19 showed significant cognitive deficits compared to controls.”
Article | Thread

The American Journal of Medicine
High incidence of autonomic dysfunction and postural orthostatic tachycardia syndrome in patients with long-COVID: Implications for management and healthcare planning — Marie-Claire Seeley et al.
“This study presents a detailed prospective evaluation of autonomic symptoms, function and [health-related quality of life] in those with PASC with comparison to those with POTS and healthy controls.”
Article | Thread

Sociology of Health & Illness
‘I am just a shadow of who I used to be’—Exploring existential loss of identity among people living with chronic conditions of Long COVID — Chao Fang et al.
“Our study provided insights into an underexplored issue of existential loss of identity and (re) construction in sociology of chronic illness. We found that existential questions facing people with chronic health conditions are often foreign and hard to understand and articulate, despite the complex and overwhelmingly painful experiences.”
Article | Thread
................

S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube

 

For next week's news, go to this thread:
News in Brief - July 2023