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News in Brief - September 2023
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Week beginning 4th September 2023
Part 1 of 2
News and advocacy
Petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review"
Last week the Science for ME committee sent an open letter to the Editor-in-chief and other senior representatives of Cochrane requesting urgent action on the review 'Exercise therapy for CFS'. There is now a petition posted on behalf of the committee inviting people to sign in support. The number of supporters by Sunday 10th September had reached over 5,000 people from 57 countries. Over 300 added comments, many telling of their experience of long term harm from exercise therapy. Please sign and share.
Petition | Petition thread | Thread with the letter
UK Government ME/CFS Delivery Plan - Open consultation
Improving the experiences of people with ME/CFS: interim delivery plan
A reminder that the consultation ends on 4th October.
There is now also a very much simplified consultation form available with a later closing date.
Website | Plan | Consultation | Easy read version | Thread
UK Government Work Capability Assessment: Activities and Descriptors Open Consultation
The government is seeking views on changing the questions on the WCA
"so that assessments reflect greater flexibility and availability of reasonable adjustments in work, particularly home working..." and "The application of Risk to Self or Others..." Closing date for responses 30th October.
Government website with documents and ways to respond | Thread
Canada - Quebec INESSS, the body in charge of medical guidelines and recommendations, published a set of documents in April 2023 for the clinical management of ME/CFS. There are three surveys (in French) asking for feedback on the three main documents.
Website | Thread
USA Disease coding. There is a proposal for PEM/PESE to be added to the list of ICD-10-CM symptoms and signs codes, particularly for people with Long Covid. Lisa McCorkell of the Patient Led Research Collaborative and Todd Davenport will be presenting at the September 13 meeting of the NCHS/CDC ICD-10-CM Coordination and Maintenance Committee. Public comments will be open for 60 days following the meeting.
Thread
UK ME Association Advertising Standards: Chrysalis Effect cannot claim ME/CFS recovery!
"The ME Association had made a complaint to the Advertising Standards Authority (ASA) relating to recovery claims made by the Chrysalis Effect Ltd. on its website in regard to ME/CFS. The ASA issued its ruling yesterday, and upheld the complaint."
MEA article | ASA ruling | Thread
Malta
MP Silvio Grixti was implicated in a scandal that allegedly enabled hundreds of people to receive disability benefits which they were not entitled to. The ME, CFS & Fibromyalgia Alliance condemns this benefits abuse and asks why are persons diagnosed with Fibromyalgia or ME being told that there are not enough funds to even consider giving them benefits?
Article | Thread
USA The Bateman Horne Center published their September newsletter.
Newsletter | Thread
..........
Resources and articles
Trial by Error by David Tuller
"Just the Latest Gibberish from Professor Chalder"
About a recent Chalder paper on inflammatory bowel disease where fatigue was associated with all-or-nothing behaviour and catastrophic thinking. "She seems never to have met an association she couldn't try to spin as a causal relationship in order to justify the promotion of CBT as a solution".
Article l Thread
"Call for Retraction of Cochrane Review from Science For ME; Overview of Viral Persistence in Long Covid; Senators United on Long Covid"
On the forum's open letter and related petition for Cochrane to withdraw its review on exercise as treatment for ME (see item above) as well as on a paper by Proal et al about virus persisting in tissue as a 'reservoir', and on an opinion piece in The Hill by three US Senators who suffer from Long Covid.
Article l Thread
"Letter to Journal about Inflated Claims of FND Prevalence"
Tuller continues to pursue and correct a false claim over-representing the prevalence of functional neurological disorder (FND). The authors of a paper containing this claim in the journal NeuroImage: Clinical had agreed to correct it, but then changed their mind. The journal invited Tuller et al to instead write a letter which he shares in his article.
Article l Thread
UpToDate Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome - by Wilhelmina D Jenkins
ME patient and forum member Wilhelmina D Jenkins has suffered from ME since 1983. Here she writes to clinicians about her journey including communication with health professionals and on living with the disease. She also has a message for other sufferers: "Be as kind to yourself as you would be to your closest friends if something this devastating happened to them. And remember that your life has value, no matter how constrained it may be. Try your absolute best to hold on."
Topic l Thread
Medscape has updated their CME course, "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosis and Management in the Age of COVID-19: Expert Insights." Access is free but registration is required.
Website | Thread
Australia ABC Why myalgic encephalomyelitis/chronic fatigue syndrome is nothing like everyday tiredness - Evan Young
An excellent article that describes two patients' experiences and highlights the problems with the Australian out of date guidelines and need for medical education.
Article | Thread
..........
Coming events
#MEAction - Caregiver Support Call
Saturday, September 16
3:30 - 4:30 PM Eastern Time (see thread for time in your time zone)
For caregivers of people with ME, Long COVID, MCAS, and other chronic conditions.
Announcement | Thread
#MEAction "The Story of the Millions Missing" Preview Party
The preview will include the history of Millions Missing and a gallery of pillowcases from the 2023 demonstration. Event will be recorded for those who cannot join.
Sunday, September 24
Noon PDT / 3:00 pm EDT / 8:00 pm BST
Announcement | Thread
Polybio Fall 2023 Symposium
"Join us online Friday Oct. 20 1-5pm EST for updates on PolyBio supported projects & collaborations including those spearheaded by the Long Covid Research Consortium." Speakers are working on Polybio funded projects and include Akiko Iwasaki, Amy Proal, David Putrino, Michael van Elzakker and Resia Pretorius.
Zoom registration | Thread
...........
Go to part 2 for Research news and Research
Part 1 of 2
News and advocacy
Petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review"
Last week the Science for ME committee sent an open letter to the Editor-in-chief and other senior representatives of Cochrane requesting urgent action on the review 'Exercise therapy for CFS'. There is now a petition posted on behalf of the committee inviting people to sign in support. The number of supporters by Sunday 10th September had reached over 5,000 people from 57 countries. Over 300 added comments, many telling of their experience of long term harm from exercise therapy. Please sign and share.
Petition | Petition thread | Thread with the letter
UK Government ME/CFS Delivery Plan - Open consultation
Improving the experiences of people with ME/CFS: interim delivery plan
A reminder that the consultation ends on 4th October.
There is now also a very much simplified consultation form available with a later closing date.
Website | Plan | Consultation | Easy read version | Thread
UK Government Work Capability Assessment: Activities and Descriptors Open Consultation
The government is seeking views on changing the questions on the WCA
"so that assessments reflect greater flexibility and availability of reasonable adjustments in work, particularly home working..." and "The application of Risk to Self or Others..." Closing date for responses 30th October.
Government website with documents and ways to respond | Thread
Canada - Quebec INESSS, the body in charge of medical guidelines and recommendations, published a set of documents in April 2023 for the clinical management of ME/CFS. There are three surveys (in French) asking for feedback on the three main documents.
Website | Thread
USA Disease coding. There is a proposal for PEM/PESE to be added to the list of ICD-10-CM symptoms and signs codes, particularly for people with Long Covid. Lisa McCorkell of the Patient Led Research Collaborative and Todd Davenport will be presenting at the September 13 meeting of the NCHS/CDC ICD-10-CM Coordination and Maintenance Committee. Public comments will be open for 60 days following the meeting.
Thread
UK ME Association Advertising Standards: Chrysalis Effect cannot claim ME/CFS recovery!
"The ME Association had made a complaint to the Advertising Standards Authority (ASA) relating to recovery claims made by the Chrysalis Effect Ltd. on its website in regard to ME/CFS. The ASA issued its ruling yesterday, and upheld the complaint."
MEA article | ASA ruling | Thread
Malta
MP Silvio Grixti was implicated in a scandal that allegedly enabled hundreds of people to receive disability benefits which they were not entitled to. The ME, CFS & Fibromyalgia Alliance condemns this benefits abuse and asks why are persons diagnosed with Fibromyalgia or ME being told that there are not enough funds to even consider giving them benefits?
Article | Thread
USA The Bateman Horne Center published their September newsletter.
Newsletter | Thread
..........
Resources and articles
Trial by Error by David Tuller
"Just the Latest Gibberish from Professor Chalder"
About a recent Chalder paper on inflammatory bowel disease where fatigue was associated with all-or-nothing behaviour and catastrophic thinking. "She seems never to have met an association she couldn't try to spin as a causal relationship in order to justify the promotion of CBT as a solution".
Article l Thread
"Call for Retraction of Cochrane Review from Science For ME; Overview of Viral Persistence in Long Covid; Senators United on Long Covid"
On the forum's open letter and related petition for Cochrane to withdraw its review on exercise as treatment for ME (see item above) as well as on a paper by Proal et al about virus persisting in tissue as a 'reservoir', and on an opinion piece in The Hill by three US Senators who suffer from Long Covid.
Article l Thread
"Letter to Journal about Inflated Claims of FND Prevalence"
Tuller continues to pursue and correct a false claim over-representing the prevalence of functional neurological disorder (FND). The authors of a paper containing this claim in the journal NeuroImage: Clinical had agreed to correct it, but then changed their mind. The journal invited Tuller et al to instead write a letter which he shares in his article.
Article l Thread
UpToDate Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome - by Wilhelmina D Jenkins
ME patient and forum member Wilhelmina D Jenkins has suffered from ME since 1983. Here she writes to clinicians about her journey including communication with health professionals and on living with the disease. She also has a message for other sufferers: "Be as kind to yourself as you would be to your closest friends if something this devastating happened to them. And remember that your life has value, no matter how constrained it may be. Try your absolute best to hold on."
Topic l Thread
Medscape has updated their CME course, "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosis and Management in the Age of COVID-19: Expert Insights." Access is free but registration is required.
Website | Thread
Australia ABC Why myalgic encephalomyelitis/chronic fatigue syndrome is nothing like everyday tiredness - Evan Young
An excellent article that describes two patients' experiences and highlights the problems with the Australian out of date guidelines and need for medical education.
Article | Thread
..........
Coming events
#MEAction - Caregiver Support Call
Saturday, September 16
3:30 - 4:30 PM Eastern Time (see thread for time in your time zone)
For caregivers of people with ME, Long COVID, MCAS, and other chronic conditions.
Announcement | Thread
#MEAction "The Story of the Millions Missing" Preview Party
The preview will include the history of Millions Missing and a gallery of pillowcases from the 2023 demonstration. Event will be recorded for those who cannot join.
Sunday, September 24
Noon PDT / 3:00 pm EDT / 8:00 pm BST
Announcement | Thread
Polybio Fall 2023 Symposium
"Join us online Friday Oct. 20 1-5pm EST for updates on PolyBio supported projects & collaborations including those spearheaded by the Long Covid Research Consortium." Speakers are working on Polybio funded projects and include Akiko Iwasaki, Amy Proal, David Putrino, Michael van Elzakker and Resia Pretorius.
Zoom registration | Thread
...........
Go to part 2 for Research news and Research
Week beginning 4th September 2023
Part 2 of 2
Research news
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.
"4,000 spit kits have been sent out and not yet returned. If you still have yours, please try to return it soon. We understand producing a sample can be tricky, see our FAQ for advice: https://rb.gy/om2il Every sample returned strengthens the results of our research."
Spread the word | Take part | Thread
Germany
The German government agency BMBF has announced new funding for the "promotion of interdisciplinary networks for research into the pathomechanisms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)".
Article | Thread
Australia National Health and Medical Research Council (NHMRC)
The first round of the Medical Research Future Fund grants for $14m of the allocated $50m for Long COVID. The four streams include people's experience of Long Covid, population data and health service impact, biological mechanisms and prognosis, and building national capability for assessing treatments. Closing date for applications 18th October.
NHMRC | Thread
UK Patient and Public Involvement (PPI) in ME/CFS research
An ME/CFS-related Immune Research Project based at Imperial College is looking to recruit 2 PPI members for an initial scoping call. The proposal is not currently funded. If the grant is awarded then there will be quarterly online meetings and some remuneration.
Thread
ME Research UK and Daphne Jackson Trust launch ME/CFS Fellowship for a biomedical researcher in the UK with a PhD returning after a career break.
Details | Thread
ME Research UK Researcher Zone is a new Twitter/X account.
"Sharing with you the latest ME/CFS research, information on relevant conferences and funding opportunities, and providing resources for researchers in the field."
Link | Thread
ME Research UK e-newsletter September 2023 includes research news and fundraising.
Newsletter | Thread
UK research grants
The NIHR Programme Development Grants (PDG) scheme invites applications to the second round of our ground-breaking Developing Innovative, Inclusive and Diverse Public Partnerships Call. "Applications involving groups who have been under-served by research are particularly welcome."
The submission deadline for applications is 13:00 on 25 October 2023.
Details | Thread
Dr. Maureen Hanson received the Outstanding Research Scientist Award at the recent IACFS/ME conference.
Announcement | Thread
............
Research
ME/CFS research
Physiological Reports
Influence of end-tidal CO2 on cerebral blood flow during orthostatic stress in controls and adults with [ME/CFS] - van Campen et al.
"In female ME/CFS patients, CO2 reactivity, as measured during orthostatic stress testing, is similar to that of HC and is independent of the type of hemodynamic abnormality. However, the influence of CO2 changes on CBF changes is modest in female ME/CFS patients."
Article | Thread
Fatigue, Biomedicine, Health and Behavior
Developing and validating a brief screening scale for ME/CFS - Jason et al.
Long and short versions of the DSQ (dePaul Symptom Questionnaire) were given to large samples of people with ME/CFS, healthy controls, and other long term illness. "The DSQ-Brief had high sensitivity, meaning it could identify those with ME/CFS versus controls, whereas accuracy dropped with other chronic illnesses." Longer versions helped to distinguish between diseases.
Article | Thread
Long Covid research
Science Translational Medicine
Humoral immunity to an endemic coronavirus is associated with postacute sequelae of COVID-19 in individuals with rheumatic diseases — Jonathan D. Herman et al.
“Rather than identifying an autoimmune marker of PASC, these results from two independent cohorts point to immunological imprinting by human endemic coronaviruses in patients with SARDs and PASC that may result in the generation of incomplete SARS-CoV-2 immunity, control, and clearance.”
Article | Thread
Nature Immunology
SARS-CoV-2 reservoir in post-acute sequelae of COVID-19 (PASC) — Proal et al.
“In this Review, we explore evidence for SARS-CoV-2 reservoir in PASC and provide context on interpretation of the findings. We delineate mechanisms by which a SARS-CoV-2 reservoir may contribute to PASC pathology and identify central research priorities and methods to guide the continued study of SARS-CoV-2 persistence in PASC.”
Article | Thread
Gut Microbes
Gut microbiota from patients with COVID-19 cause alterations in mice that resemble post-COVID symptoms — Viviani Mendes de Almeida et al.
“Here, we report that the gut microbiota of post-COVID subjects had a remarkable predominance of Enterobacteriaceae strains with an antibiotic-resistant phenotype compared to healthy controls. Additionally, short-chain fatty acid (SCFA) levels were reduced in feces.”
Article | Thread
Journal of Applied Physiology
Structural and functional impairments of skeletal muscle in patients with post-acute sequelae of SARS-CoV-2 infection — Marta Colosio et al.
“In our cohort of patients with PASC, we showed limited exercise tolerance mainly due to ‘peripheral’ determinants. Substantial reductions were observed for biomarkers of mitochondrial function, content, and biogenesis”
Article | Thread
Annals of Neurology
COVID-19 Induces Neuroinflammation and Suppresses Peroxisomes in the Brain — A. Roczkowsky et al.
“The present studies point to a role of persistent neuroinflammation, especially inflammasome activation, and peroxisome biogenesis factor suppression as contributing determinants of the neurological sequelae of COVID-19.”
Article | Thread
Preprint: BioRxiv
SARS-CoV-2 Spike amyloid fibrils specifically and selectively accelerates amyloid fibril formation of human prion protein and the amyloid β peptide — Johan NK Larsson et al.
“Albeit purely in vitro, our data suggest that cross-seeding by Spike-amyloid fibrils can be implicated in the increasing number of reports of CJD, AD, and possibly other neurodegenerative diseases in the wake of COVID-19.”
Article | Thread
...............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research news
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.
"4,000 spit kits have been sent out and not yet returned. If you still have yours, please try to return it soon. We understand producing a sample can be tricky, see our FAQ for advice: https://rb.gy/om2il Every sample returned strengthens the results of our research."
Spread the word | Take part | Thread
Germany
The German government agency BMBF has announced new funding for the "promotion of interdisciplinary networks for research into the pathomechanisms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)".
Article | Thread
Australia National Health and Medical Research Council (NHMRC)
The first round of the Medical Research Future Fund grants for $14m of the allocated $50m for Long COVID. The four streams include people's experience of Long Covid, population data and health service impact, biological mechanisms and prognosis, and building national capability for assessing treatments. Closing date for applications 18th October.
NHMRC | Thread
UK Patient and Public Involvement (PPI) in ME/CFS research
An ME/CFS-related Immune Research Project based at Imperial College is looking to recruit 2 PPI members for an initial scoping call. The proposal is not currently funded. If the grant is awarded then there will be quarterly online meetings and some remuneration.
Thread
ME Research UK and Daphne Jackson Trust launch ME/CFS Fellowship for a biomedical researcher in the UK with a PhD returning after a career break.
Details | Thread
ME Research UK Researcher Zone is a new Twitter/X account.
"Sharing with you the latest ME/CFS research, information on relevant conferences and funding opportunities, and providing resources for researchers in the field."
Link | Thread
ME Research UK e-newsletter September 2023 includes research news and fundraising.
Newsletter | Thread
UK research grants
The NIHR Programme Development Grants (PDG) scheme invites applications to the second round of our ground-breaking Developing Innovative, Inclusive and Diverse Public Partnerships Call. "Applications involving groups who have been under-served by research are particularly welcome."
The submission deadline for applications is 13:00 on 25 October 2023.
Details | Thread
Dr. Maureen Hanson received the Outstanding Research Scientist Award at the recent IACFS/ME conference.
Announcement | Thread
............
Research
ME/CFS research
Physiological Reports
Influence of end-tidal CO2 on cerebral blood flow during orthostatic stress in controls and adults with [ME/CFS] - van Campen et al.
"In female ME/CFS patients, CO2 reactivity, as measured during orthostatic stress testing, is similar to that of HC and is independent of the type of hemodynamic abnormality. However, the influence of CO2 changes on CBF changes is modest in female ME/CFS patients."
Article | Thread
Fatigue, Biomedicine, Health and Behavior
Developing and validating a brief screening scale for ME/CFS - Jason et al.
Long and short versions of the DSQ (dePaul Symptom Questionnaire) were given to large samples of people with ME/CFS, healthy controls, and other long term illness. "The DSQ-Brief had high sensitivity, meaning it could identify those with ME/CFS versus controls, whereas accuracy dropped with other chronic illnesses." Longer versions helped to distinguish between diseases.
Article | Thread
Long Covid research
Science Translational Medicine
Humoral immunity to an endemic coronavirus is associated with postacute sequelae of COVID-19 in individuals with rheumatic diseases — Jonathan D. Herman et al.
“Rather than identifying an autoimmune marker of PASC, these results from two independent cohorts point to immunological imprinting by human endemic coronaviruses in patients with SARDs and PASC that may result in the generation of incomplete SARS-CoV-2 immunity, control, and clearance.”
Article | Thread
Nature Immunology
SARS-CoV-2 reservoir in post-acute sequelae of COVID-19 (PASC) — Proal et al.
“In this Review, we explore evidence for SARS-CoV-2 reservoir in PASC and provide context on interpretation of the findings. We delineate mechanisms by which a SARS-CoV-2 reservoir may contribute to PASC pathology and identify central research priorities and methods to guide the continued study of SARS-CoV-2 persistence in PASC.”
Article | Thread
Gut Microbes
Gut microbiota from patients with COVID-19 cause alterations in mice that resemble post-COVID symptoms — Viviani Mendes de Almeida et al.
“Here, we report that the gut microbiota of post-COVID subjects had a remarkable predominance of Enterobacteriaceae strains with an antibiotic-resistant phenotype compared to healthy controls. Additionally, short-chain fatty acid (SCFA) levels were reduced in feces.”
Article | Thread
Journal of Applied Physiology
Structural and functional impairments of skeletal muscle in patients with post-acute sequelae of SARS-CoV-2 infection — Marta Colosio et al.
“In our cohort of patients with PASC, we showed limited exercise tolerance mainly due to ‘peripheral’ determinants. Substantial reductions were observed for biomarkers of mitochondrial function, content, and biogenesis”
Article | Thread
Annals of Neurology
COVID-19 Induces Neuroinflammation and Suppresses Peroxisomes in the Brain — A. Roczkowsky et al.
“The present studies point to a role of persistent neuroinflammation, especially inflammasome activation, and peroxisome biogenesis factor suppression as contributing determinants of the neurological sequelae of COVID-19.”
Article | Thread
Preprint: BioRxiv
SARS-CoV-2 Spike amyloid fibrils specifically and selectively accelerates amyloid fibril formation of human prion protein and the amyloid β peptide — Johan NK Larsson et al.
“Albeit purely in vitro, our data suggest that cross-seeding by Spike-amyloid fibrils can be implicated in the increasing number of reports of CJD, AD, and possibly other neurodegenerative diseases in the wake of COVID-19.”
Article | Thread
...............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 11th September 2023
Part 1 of 2
News and advocacy
Petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review"
The Science for ME petition in support of the open letter to Cochrane now has over 6000 signatures. Please sign and share.
Petition | Petition thread | Thread with the letter
Emerge Australia "The ME/CFS Registry is undergoing expansion and enhancement!
Due to launch in October 2023, the AusME Registry will become open to people with ME/CFS aged 12 and over AND people (12+) with Long COVID."
" Offering a comprehensive dataset of well-characterised participant data and biosamples (blood), the ME/CFS Registry and Biobank provide crucial support to Australian medical researchers..."
Details | Thread
USA Solve M.E.
"Our flagship research and advocacy journal, The Chronicle, has arrived! This special edition features key resources from our website that community members can utilize as they navigate their journeys with MECFS or Long Covid."
Chronicle | Thread
Solve M.E. Welcomes Chief Scientific Officer, H. Timothy Hsiao, Ph.D.
Thread
UK action reminders
DecodeME needs more participants and reminds people who have been sent a spit kit to return them.
Spread the word | Take part | Thread
Government ME/CFS Delivery Plan - Open consultation
Improving the experiences of people with ME/CFS: interim delivery plan
Submissions close on 4th October.
Website | Plan | Consultation | Easy read version | Thread
Government Work Capability Assessment: Open Consultation
Closing date for responses 30th October.
Government website with documents and ways to respond | Thread
UK ME Association Count ME In Campaign
Initial survey results from over 6000 people with ME/CFS showed mostly poor experience of the NHS, with no change since the 2021 NICE guidelines.
Article
Research recruitment: Are you the parent of an adult child with ME/CFS?
Article
Situations Vacant: Fundraising & Development Manager
Closing date Friday 22nd September
Article | Thread
Aotearoa/New Zealand
Norwegian patient advocate Nina E. Steinkopf has published a blog post providing New Zealanders with information about Mel Abbott's "Empower Therapies" as a supposed treatment for ME/CFS, based on pseudoscience.
Article | Thread
..............
Articles and interview
Health Affairs Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID
A fantastic article by Brian Hughes, Steven Lubet and David Tuller on the ongoing paradigm shift on ME (and related post infectious illness). It brings the reader up to speed on how the historical and outdated psychosocial approach has been challenged by thorough reviews of the science showing that ME should instead be seen as an illness caused by physiological pathogenesis. The article also discusses the resistance such paradigm shifts can be met with from those on the losing end.
"A new NIH institute or center for post-infectious illness is a promising prospect. However, any such initiative is unlikely to happen quickly, and obtaining actionable results would take even longer. In the interim, we believe that medical and public health authorities should not wait for the paradigm to shift by itself. Instead, they must push the paradigm and help ensure its onward passage against the forces of resistance and revanchism."
Article l Thread
USA CDC Update: Epidemiologic Characteristics of Long COVID
Includes symptom groups (including ME/CFS-like and dysautonomia) and prevalence data. "Post-COVID Conditions are associated with increased health care utilization and significant activity limitations. Accumulating evidence that COVID-19 vaccination reduces Post-COVID Conditions among both children and adults."
CDC document | Thread
The Science Times Leading UK Doctors and Charities “Livid” as Covid 19 Inquiry Excludes Long Covid Representation in Latest Module
"Module 4 of the Covid-19 Inquiry opens this week and will examine the roll out of vaccines, therapeutics and anti-viral treatment across the UK."
"By not investigating Long Covid in Module 4, the Inquiry is in effect saying that there is no need to investigate pharmaceutical interventions which could prevent and treat Long Covid. The exclusion of the Long Covid Groups dismisses the profound impact that Long Covid has had, and continues to have, on many people in the UK."
Article | Thread
Time Why You Should Rest - a Lot - If You Have COVID-19
Informative article on PEM and pacing with among others Jamie Seltzer from #MEAction.
Article l Thread
Trial by Error by David Tuller Interview with Journalist Betsy Ladyzhets about NIH's Flawed $1.2 Billion RECOVER Program for Long Covid
Interesting interview with health, science and data journalist Betsy Ladyzhets who has written a critical, investigative report for STAT on the RECOVER program titled "'Underwhelming': NIH trials fails to test meaningful long Covid treatments - after 2.5 years and $1 billion". This is a topic she will continue to cover. Duration: 20 minutes.
Interview l Thread
Norway
Trude Schei from the Norwegian ME Association has written an opinion piece urging better care for severe ME patients. Patients need to pay out of their own pocket or raise money in order to access care at Røysumtunet, the only institution with an offer for severe ME, instead of receiving support for a stay from their municipalities.
Opinion piece (Norwegian) l Thread
Norway
Patient advocate Nina E. Steinkopf has an update from the ongoing controversial trial on the alternative method Lightning Process as ME treatment. A participant has been excluded from the trial due to having asked critical questions on social media and with that being viewed as having insufficient motivation, which again could lead to the study being affected in a negative direction, according to the study manager.
Article (Norwegian) l Thread
Pitchfork Belle and Sebastian's Stuart Murdoch to Publish Debut Novel
Musician and ME-sufferer Stuart Murdoch will publish a novel titled "Nobody's Empire" next year. "Part memoir and part fiction, the novel is set in Glasgow and California in the early 1990s and followed a character searching for "a new-world reinvention" after his hospitalisation with chronic fatigue syndrome".
Article l Thread
C&En Long COVID: The hunt for causes and cures
A thorough article by Shi En Kim covering current hypotheses from the Long Covid field.
Article l Thread
France
The Association Francaise du Syndrome de Fatigue Chronique has made a document about pacing.
Article | Thread
............
For research news and research go to the next post.
Part 1 of 2
News and advocacy
Petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review"
The Science for ME petition in support of the open letter to Cochrane now has over 6000 signatures. Please sign and share.
Petition | Petition thread | Thread with the letter
Emerge Australia "The ME/CFS Registry is undergoing expansion and enhancement!
Due to launch in October 2023, the AusME Registry will become open to people with ME/CFS aged 12 and over AND people (12+) with Long COVID."
" Offering a comprehensive dataset of well-characterised participant data and biosamples (blood), the ME/CFS Registry and Biobank provide crucial support to Australian medical researchers..."
Details | Thread
USA Solve M.E.
"Our flagship research and advocacy journal, The Chronicle, has arrived! This special edition features key resources from our website that community members can utilize as they navigate their journeys with MECFS or Long Covid."
Chronicle | Thread
Solve M.E. Welcomes Chief Scientific Officer, H. Timothy Hsiao, Ph.D.
Thread
UK action reminders
DecodeME needs more participants and reminds people who have been sent a spit kit to return them.
Spread the word | Take part | Thread
Government ME/CFS Delivery Plan - Open consultation
Improving the experiences of people with ME/CFS: interim delivery plan
Submissions close on 4th October.
Website | Plan | Consultation | Easy read version | Thread
Government Work Capability Assessment: Open Consultation
Closing date for responses 30th October.
Government website with documents and ways to respond | Thread
UK ME Association Count ME In Campaign
Initial survey results from over 6000 people with ME/CFS showed mostly poor experience of the NHS, with no change since the 2021 NICE guidelines.
Article
Research recruitment: Are you the parent of an adult child with ME/CFS?
Article
Situations Vacant: Fundraising & Development Manager
Closing date Friday 22nd September
Article | Thread
Aotearoa/New Zealand
Norwegian patient advocate Nina E. Steinkopf has published a blog post providing New Zealanders with information about Mel Abbott's "Empower Therapies" as a supposed treatment for ME/CFS, based on pseudoscience.
Article | Thread
..............
Articles and interview
Health Affairs Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID
A fantastic article by Brian Hughes, Steven Lubet and David Tuller on the ongoing paradigm shift on ME (and related post infectious illness). It brings the reader up to speed on how the historical and outdated psychosocial approach has been challenged by thorough reviews of the science showing that ME should instead be seen as an illness caused by physiological pathogenesis. The article also discusses the resistance such paradigm shifts can be met with from those on the losing end.
"A new NIH institute or center for post-infectious illness is a promising prospect. However, any such initiative is unlikely to happen quickly, and obtaining actionable results would take even longer. In the interim, we believe that medical and public health authorities should not wait for the paradigm to shift by itself. Instead, they must push the paradigm and help ensure its onward passage against the forces of resistance and revanchism."
Article l Thread
USA CDC Update: Epidemiologic Characteristics of Long COVID
Includes symptom groups (including ME/CFS-like and dysautonomia) and prevalence data. "Post-COVID Conditions are associated with increased health care utilization and significant activity limitations. Accumulating evidence that COVID-19 vaccination reduces Post-COVID Conditions among both children and adults."
CDC document | Thread
The Science Times Leading UK Doctors and Charities “Livid” as Covid 19 Inquiry Excludes Long Covid Representation in Latest Module
"Module 4 of the Covid-19 Inquiry opens this week and will examine the roll out of vaccines, therapeutics and anti-viral treatment across the UK."
"By not investigating Long Covid in Module 4, the Inquiry is in effect saying that there is no need to investigate pharmaceutical interventions which could prevent and treat Long Covid. The exclusion of the Long Covid Groups dismisses the profound impact that Long Covid has had, and continues to have, on many people in the UK."
Article | Thread
Time Why You Should Rest - a Lot - If You Have COVID-19
Informative article on PEM and pacing with among others Jamie Seltzer from #MEAction.
Article l Thread
Trial by Error by David Tuller Interview with Journalist Betsy Ladyzhets about NIH's Flawed $1.2 Billion RECOVER Program for Long Covid
Interesting interview with health, science and data journalist Betsy Ladyzhets who has written a critical, investigative report for STAT on the RECOVER program titled "'Underwhelming': NIH trials fails to test meaningful long Covid treatments - after 2.5 years and $1 billion". This is a topic she will continue to cover. Duration: 20 minutes.
Interview l Thread
Norway
Trude Schei from the Norwegian ME Association has written an opinion piece urging better care for severe ME patients. Patients need to pay out of their own pocket or raise money in order to access care at Røysumtunet, the only institution with an offer for severe ME, instead of receiving support for a stay from their municipalities.
Opinion piece (Norwegian) l Thread
Norway
Patient advocate Nina E. Steinkopf has an update from the ongoing controversial trial on the alternative method Lightning Process as ME treatment. A participant has been excluded from the trial due to having asked critical questions on social media and with that being viewed as having insufficient motivation, which again could lead to the study being affected in a negative direction, according to the study manager.
Article (Norwegian) l Thread
Pitchfork Belle and Sebastian's Stuart Murdoch to Publish Debut Novel
Musician and ME-sufferer Stuart Murdoch will publish a novel titled "Nobody's Empire" next year. "Part memoir and part fiction, the novel is set in Glasgow and California in the early 1990s and followed a character searching for "a new-world reinvention" after his hospitalisation with chronic fatigue syndrome".
Article l Thread
C&En Long COVID: The hunt for causes and cures
A thorough article by Shi En Kim covering current hypotheses from the Long Covid field.
Article l Thread
France
The Association Francaise du Syndrome de Fatigue Chronique has made a document about pacing.
Article | Thread
............
For research news and research go to the next post.
Week beginning 11th September 2023
Part 2 of 2
............
Research news
ScienceAlert New Blood Test For Chronic Fatigue Syndrome Has 91% Accuracy
On the preliminary results from a study by Jiabao Xu et al on a blood cell-based test for ME/CFS. "The blood test differentiates between the properties of a type of blood cell called peripheral blood mononuclear cells (PBMCs) in people with an without ME/CFS, using a technique called Raman spectroscopy and an artificial intelligence (AI) tool".
Article l Thread
Yale School of medicine Post-Acute Infection Syndromes Will Be the Focus of New YSM Center
On the newly launched Center for Infection & Immunity (CII) at Yale created by Akiko Iwasaki, PhD, which will investigate ME together with Long COVID and post-treatment Lyme disease. Dr. Iwasaki says: "Post-acute infection syndromes have historically been ignored. They've been going on for decades - or maybe hundreds of years - but we haven't been paying attention. Our center is uniquely positioned to tackle these diseases because of our building expertise from Long COVID and our many collaborations across different disciplines".
Article l Thread
NPR Unraveling long COVID: Here's what scientists who study the illness want to find out
Researchers and patient advocates who participated at a long COVID conference in USA last month share some findings and current hypotheses from the field. "All of those involved in research stress that they don't expect just one answer to long COVID. It's likely that many of these theories about its underlying cause are interrelated."
Article l Thread
............
Research
ME/CFS research
PLOS ONE
Myalgic Encephalomyelitis—Chronic Fatigue Syndrome Common Data Element item content analysis - Slavin et al.
The authors reviewed common data elements for ME/CFS and found that relatively few items assess the impact of ME/CFS symptoms on activities and participation. Their findings support the development of ME/CFS-specific patient reported outcome measures.
Article | Thread
Brain Behavior and Immunity Integrative
What Long COVID investigators can learn from four decades of ME/CFS research - Jason et al.
"The current article provides guidelines for developing a case definition for Long COVID and discusses the significance of psychometric issues and criterion variance, including how to specify symptoms, develop thresholds, subtypes, and exclusionary conditions".
Article | Thread
Convergence
The social robot? Analyzing whether and how the telepresence robot AV1 affords socialization
One of the cases discussed in detail in this article is a patient with CFS.
Article | Thread
Long Covid research
Brain, Behavior, and Immunity
Plasma proteomics show altered inflammatory and mitochondrial proteins in patients with neurologic symptoms of post-acute sequelae of SARS-CoV-2 infection — Hanson et al.
“… we discovered a correlation between [neuro-PASC] patient’s lower subjective impression of recovery to pre-COVID-19 baseline with an increase in the concentration of the oxidative phosphorylation protein COX7A1, which was also associated with neurologic symptoms and fatigue, as well as impairment in QoL and cognitive dysfunction.”
Article | Thread
Genome Medicine
SARS-CoV-2 infection induces a long-lived pro-inflammatory transcriptional profile — Zhang et al.
“A key finding was the observation that the transcriptional changes in COVID-19 patients were associated with the activation of the NF-kB signalling pathway, which is consistent with its previously identified role in severe COVID-19 patients”
Article | Thread
Preprint: BioRxiv
Proximal immune-epithelial progenitor interactions drive chronic tissue sequelae post COVID-19 — Harish Narasimhan et al.
“In this report, we utilized a cohort of respiratory PASC patients with viral infection-mediated pulmonary fibrosis and a clinically relevant mouse model of post-viral lung sequelae to investigate the pathophysiology of respiratory PASC.” “Together, our findings implicate a dysregulated immune-epithelial progenitor niche in driving respiratory PASC and identify potential therapeutic targets to dampen chronic pulmonary sequelae post respiratory viral infections including SARS-CoV-2.”
Article | Thread
Preprint: BioRxiv
Digital holo-tomographic 3D maps of COVID-19 microclots in blood to assess disease severity — Talia Bergaglio et al.
“Our findings highlight that label-free high-throughput microscopy can be used as a point-of-care technique to visualize and quantify the presence of microclots directly in plasma without the need for complicated sample preparation techniques.”
Article | Thread
CHEST
Post-Acute Sequelae of SARS-CoV-2: More Than Deconditioning — Phillip Joseph and Inderjit Singh
Commentary. “While deconditioning is commonly suggested to cause impaired systemic [oxygen extraction], this does not cause the degree of impairment observed in the aforementioned invasive CPET study. Bedrest studies demonstrate only a mild impairment of systemic EO2 with deconditioning. Potential causes of impaired systemic EO2 include mitochondrial dysfunction and peripheral macroscopic or microscopic left-to-right shunts.”
Article | Thread
...............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
............
Research news
ScienceAlert New Blood Test For Chronic Fatigue Syndrome Has 91% Accuracy
On the preliminary results from a study by Jiabao Xu et al on a blood cell-based test for ME/CFS. "The blood test differentiates between the properties of a type of blood cell called peripheral blood mononuclear cells (PBMCs) in people with an without ME/CFS, using a technique called Raman spectroscopy and an artificial intelligence (AI) tool".
Article l Thread
Yale School of medicine Post-Acute Infection Syndromes Will Be the Focus of New YSM Center
On the newly launched Center for Infection & Immunity (CII) at Yale created by Akiko Iwasaki, PhD, which will investigate ME together with Long COVID and post-treatment Lyme disease. Dr. Iwasaki says: "Post-acute infection syndromes have historically been ignored. They've been going on for decades - or maybe hundreds of years - but we haven't been paying attention. Our center is uniquely positioned to tackle these diseases because of our building expertise from Long COVID and our many collaborations across different disciplines".
Article l Thread
NPR Unraveling long COVID: Here's what scientists who study the illness want to find out
Researchers and patient advocates who participated at a long COVID conference in USA last month share some findings and current hypotheses from the field. "All of those involved in research stress that they don't expect just one answer to long COVID. It's likely that many of these theories about its underlying cause are interrelated."
Article l Thread
............
Research
ME/CFS research
PLOS ONE
Myalgic Encephalomyelitis—Chronic Fatigue Syndrome Common Data Element item content analysis - Slavin et al.
The authors reviewed common data elements for ME/CFS and found that relatively few items assess the impact of ME/CFS symptoms on activities and participation. Their findings support the development of ME/CFS-specific patient reported outcome measures.
Article | Thread
Brain Behavior and Immunity Integrative
What Long COVID investigators can learn from four decades of ME/CFS research - Jason et al.
"The current article provides guidelines for developing a case definition for Long COVID and discusses the significance of psychometric issues and criterion variance, including how to specify symptoms, develop thresholds, subtypes, and exclusionary conditions".
Article | Thread
Convergence
The social robot? Analyzing whether and how the telepresence robot AV1 affords socialization
One of the cases discussed in detail in this article is a patient with CFS.
Article | Thread
Long Covid research
Brain, Behavior, and Immunity
Plasma proteomics show altered inflammatory and mitochondrial proteins in patients with neurologic symptoms of post-acute sequelae of SARS-CoV-2 infection — Hanson et al.
“… we discovered a correlation between [neuro-PASC] patient’s lower subjective impression of recovery to pre-COVID-19 baseline with an increase in the concentration of the oxidative phosphorylation protein COX7A1, which was also associated with neurologic symptoms and fatigue, as well as impairment in QoL and cognitive dysfunction.”
Article | Thread
Genome Medicine
SARS-CoV-2 infection induces a long-lived pro-inflammatory transcriptional profile — Zhang et al.
“A key finding was the observation that the transcriptional changes in COVID-19 patients were associated with the activation of the NF-kB signalling pathway, which is consistent with its previously identified role in severe COVID-19 patients”
Article | Thread
Preprint: BioRxiv
Proximal immune-epithelial progenitor interactions drive chronic tissue sequelae post COVID-19 — Harish Narasimhan et al.
“In this report, we utilized a cohort of respiratory PASC patients with viral infection-mediated pulmonary fibrosis and a clinically relevant mouse model of post-viral lung sequelae to investigate the pathophysiology of respiratory PASC.” “Together, our findings implicate a dysregulated immune-epithelial progenitor niche in driving respiratory PASC and identify potential therapeutic targets to dampen chronic pulmonary sequelae post respiratory viral infections including SARS-CoV-2.”
Article | Thread
Preprint: BioRxiv
Digital holo-tomographic 3D maps of COVID-19 microclots in blood to assess disease severity — Talia Bergaglio et al.
“Our findings highlight that label-free high-throughput microscopy can be used as a point-of-care technique to visualize and quantify the presence of microclots directly in plasma without the need for complicated sample preparation techniques.”
Article | Thread
CHEST
Post-Acute Sequelae of SARS-CoV-2: More Than Deconditioning — Phillip Joseph and Inderjit Singh
Commentary. “While deconditioning is commonly suggested to cause impaired systemic [oxygen extraction], this does not cause the degree of impairment observed in the aforementioned invasive CPET study. Bedrest studies demonstrate only a mild impairment of systemic EO2 with deconditioning. Potential causes of impaired systemic EO2 include mitochondrial dysfunction and peripheral macroscopic or microscopic left-to-right shunts.”
Article | Thread
...............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 18th September 2023
Part 1 of 2
News and advocacy
JNNP
Rapid Response: The ME community support NICE and reject the misguided attack in ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for [CFS/ME] - Spreag et al.
JNNP has published an amended version of the MEAction UK rapid response to the problematic White et al article published in July. The original MEAction response was initially published and then withdrawn by the journal.
Spreag et al give an excellent analysis of key errors by White et al, including on diagnositic criteria, NICE's evidence review methodology, and treatments.
"... this article reads as an attack on the 2021 NICE guideline for ME/CFS by a group of researchers who have focussed on treating ME with Graded Exercise Therapy and CBT. By contrast, the patient community welcomes the NICE guideline and the robust review of the evidence that NICE carried out."
JNNP | MEAction | Thread
Science for ME letters to Cochrane and petition update
"On the 17 September, the forum committee sent a followup email to a substantial number of Cochrane officers and Hilda Bastian, again requesting action. It notes the establishment of this petition... It also asks the Cochrane officers to take the time to read the comments on the petition, and quotes a small selection of those comments." So far over 6800 have signed the petition, with over 400 comments, many describing long lasting harm from exercise therapy.
ME/CFS organisations from around the world are adding their support, and individual supporters are encouraged to sign the petition.
Apart from acknowledging the letters, there has been no response from Cochrane.
Petition | Petition thread | Thread with the letters | Organisations supporting the letter
UK ME Association from an email newsletter:
The ME Association is thinking about investing in the creation of a new Health App for ME/CFS and Long Covid. They invite people to a survey on their use of apps and whether they might find this one useful.
Thread with link
Research recruitment: Are you the parent of an adult child with ME/CFS?
Counselling lecturer Dr Kate Diggory of Keele University would like to interview parents about their experience.
Article with details | Thread
Aotearoa/New Zealand — University of Auckland Goodfellow Unit
GP continuing medical education case study on ME/CFS. Written by Prof. Bruce Arroll, director of the Goodfellow Unit.
The recommended therapies are in direct opposition to NICE 2021 and CDC/Academy of Medicine evidence-based guidelines. These are cognitive behavioural therapy, graded exercise therapy and the Lightning Process. The article makes the specific claim that the NICE guidelines have been severely discredited, referencing a paper that has itself been severely discredited.
Article | Thread
ME Association Response
Dr. Charles Shepherd, medical advisor to the UK's ME Association writes: "The information and guidance in this training module for GPs in New Zealand on the treatment of ME/CFS is really awful [...] I hope that the New Zealand ME/CFS charities will call for the immediate withdrawal of this learning module."
ME Association Response | Thread
...........
Articles and interviews
The Washington Post She wrote to a scientist about her fatigue. It inspired a breakthrough
Brian Vastag writes about the fascinating backstory which led to the recent finding of an overabundance of the protein WASF3 in muscle tissues from ME/CFS patients. This happened as a result of breast cancer survivor and ME/CFS patient Amanda Twinam contacting NIH researcher Dr. Paul Hwang presenting a hypothesis that her fatigue symptoms might be caused by problems with her mitochondria.
The newspaper The Independent has picked up Vastag's story and writes that Dr. Hwang is now focusing on curing ME/CFS and is planning a clinical trial "to determine whether a drug that's new to the market may help patients with the condition".
The Washington Post l The Independent l Thread
Trial by Error by David Tuller My Talk at Cambridge Last October on "Epidemiological Sleight-of-Hand: The Troubling Case of 'Medically Unexplained Symptoms".
"I gave a talk at Cambridge University last October called “Epidemiological Sleight-of-Hand: The Troubling Case of ‘Medically Unexplained Symptoms.'” More accurately, I gave the same talk on two successive days—October 18th and 19th–because of video malfunctions on the first day. I thought I’d written a post about it, but when I searched recently, I couldn’t find one. So here it is, belatedly."
Article l Thread
David M Tuller - YouTube interviews
A Physiotherapist's Guide to Understanding and Managing ME/CFS
"A new book, A Physiotherapist's Guide to Understanding and Managing ME/CFS, has arrived at a timely moment. With so many long Covid patients being diagnosed with ME or ME/CFS, it is essential that physiotherapists - or physical therapists, in the US - grasp the essentials of the disease, and in particular the existence of post-exertional malaise (PEM)". "I recently spoke with two of the four authors about why they wrote the book, how they formed Physios for ME in the first place, and related issues".
Interview l Thread
Interview with Yale's Akiko Iwasaki
An interview with Akiko Iwasaki, professor of immunobiology at the Yale School of Medicine and leader of a new Center for Infection & Immunity "about the possible root causes of long Covid, her concerns about claims that it is psychosomatic, and the importance of learning from patients".
Interview l Thread
BMJ
Long covid: the doctors’ lives destroyed by an illness they caught while doing their jobs - Adele Waters
A survey of medical professionals with Long Covid showed that almost one in five (18%) were no longer able to work. Some said they have often struggled for medical colleagues to take their symptoms seriously and have even felt “gaslighted” by them.
Article | Thread
..............
Coming events
Norway A research project on ME and the health services (TjenestenogMEg) has now ended after five years. The researchers will share what they've learned and invite to a panel debate on how the results can contribute to improvement of health services and politics. The seminar takes place in Oslo September 26th and online.
More info l Thread
Hope 4 ME and Fibro Northern Ireland
Sunday, 1 October 1900 - 2100 BST
Taking Control - M.E., Fibromyalgia & Long Covid - Best Practice Self Management Advice on Stabilising Symptoms and Avoiding Deterioration
In person event (available also online for NI health care professionals and students.)
Details | Thread
#MEAction "The Story of the Millions Missing" Preview Party
The preview will include the history of Millions Missing and a gallery of pillowcases from the 2023 demonstration. The event will be recorded for those who cannot join.
Sunday, September 24, noon PDT / 3:00 pm EDT / 8:00 pm BST
Article | Thread
...........
Go to the next post for the sections on research news and research.
Part 1 of 2
News and advocacy
JNNP
Rapid Response: The ME community support NICE and reject the misguided attack in ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for [CFS/ME] - Spreag et al.
JNNP has published an amended version of the MEAction UK rapid response to the problematic White et al article published in July. The original MEAction response was initially published and then withdrawn by the journal.
Spreag et al give an excellent analysis of key errors by White et al, including on diagnositic criteria, NICE's evidence review methodology, and treatments.
"... this article reads as an attack on the 2021 NICE guideline for ME/CFS by a group of researchers who have focussed on treating ME with Graded Exercise Therapy and CBT. By contrast, the patient community welcomes the NICE guideline and the robust review of the evidence that NICE carried out."
JNNP | MEAction | Thread
Science for ME letters to Cochrane and petition update
"On the 17 September, the forum committee sent a followup email to a substantial number of Cochrane officers and Hilda Bastian, again requesting action. It notes the establishment of this petition... It also asks the Cochrane officers to take the time to read the comments on the petition, and quotes a small selection of those comments." So far over 6800 have signed the petition, with over 400 comments, many describing long lasting harm from exercise therapy.
ME/CFS organisations from around the world are adding their support, and individual supporters are encouraged to sign the petition.
Apart from acknowledging the letters, there has been no response from Cochrane.
Petition | Petition thread | Thread with the letters | Organisations supporting the letter
UK ME Association from an email newsletter:
The ME Association is thinking about investing in the creation of a new Health App for ME/CFS and Long Covid. They invite people to a survey on their use of apps and whether they might find this one useful.
Thread with link
Research recruitment: Are you the parent of an adult child with ME/CFS?
Counselling lecturer Dr Kate Diggory of Keele University would like to interview parents about their experience.
Article with details | Thread
Aotearoa/New Zealand — University of Auckland Goodfellow Unit
GP continuing medical education case study on ME/CFS. Written by Prof. Bruce Arroll, director of the Goodfellow Unit.
The recommended therapies are in direct opposition to NICE 2021 and CDC/Academy of Medicine evidence-based guidelines. These are cognitive behavioural therapy, graded exercise therapy and the Lightning Process. The article makes the specific claim that the NICE guidelines have been severely discredited, referencing a paper that has itself been severely discredited.
Article | Thread
ME Association Response
Dr. Charles Shepherd, medical advisor to the UK's ME Association writes: "The information and guidance in this training module for GPs in New Zealand on the treatment of ME/CFS is really awful [...] I hope that the New Zealand ME/CFS charities will call for the immediate withdrawal of this learning module."
ME Association Response | Thread
...........
Articles and interviews
The Washington Post She wrote to a scientist about her fatigue. It inspired a breakthrough
Brian Vastag writes about the fascinating backstory which led to the recent finding of an overabundance of the protein WASF3 in muscle tissues from ME/CFS patients. This happened as a result of breast cancer survivor and ME/CFS patient Amanda Twinam contacting NIH researcher Dr. Paul Hwang presenting a hypothesis that her fatigue symptoms might be caused by problems with her mitochondria.
The newspaper The Independent has picked up Vastag's story and writes that Dr. Hwang is now focusing on curing ME/CFS and is planning a clinical trial "to determine whether a drug that's new to the market may help patients with the condition".
The Washington Post l The Independent l Thread
Trial by Error by David Tuller My Talk at Cambridge Last October on "Epidemiological Sleight-of-Hand: The Troubling Case of 'Medically Unexplained Symptoms".
"I gave a talk at Cambridge University last October called “Epidemiological Sleight-of-Hand: The Troubling Case of ‘Medically Unexplained Symptoms.'” More accurately, I gave the same talk on two successive days—October 18th and 19th–because of video malfunctions on the first day. I thought I’d written a post about it, but when I searched recently, I couldn’t find one. So here it is, belatedly."
Article l Thread
David M Tuller - YouTube interviews
A Physiotherapist's Guide to Understanding and Managing ME/CFS
"A new book, A Physiotherapist's Guide to Understanding and Managing ME/CFS, has arrived at a timely moment. With so many long Covid patients being diagnosed with ME or ME/CFS, it is essential that physiotherapists - or physical therapists, in the US - grasp the essentials of the disease, and in particular the existence of post-exertional malaise (PEM)". "I recently spoke with two of the four authors about why they wrote the book, how they formed Physios for ME in the first place, and related issues".
Interview l Thread
Interview with Yale's Akiko Iwasaki
An interview with Akiko Iwasaki, professor of immunobiology at the Yale School of Medicine and leader of a new Center for Infection & Immunity "about the possible root causes of long Covid, her concerns about claims that it is psychosomatic, and the importance of learning from patients".
Interview l Thread
BMJ
Long covid: the doctors’ lives destroyed by an illness they caught while doing their jobs - Adele Waters
A survey of medical professionals with Long Covid showed that almost one in five (18%) were no longer able to work. Some said they have often struggled for medical colleagues to take their symptoms seriously and have even felt “gaslighted” by them.
Article | Thread
..............
Coming events
Norway A research project on ME and the health services (TjenestenogMEg) has now ended after five years. The researchers will share what they've learned and invite to a panel debate on how the results can contribute to improvement of health services and politics. The seminar takes place in Oslo September 26th and online.
More info l Thread
Hope 4 ME and Fibro Northern Ireland
Sunday, 1 October 1900 - 2100 BST
Taking Control - M.E., Fibromyalgia & Long Covid - Best Practice Self Management Advice on Stabilising Symptoms and Avoiding Deterioration
In person event (available also online for NI health care professionals and students.)
Details | Thread
#MEAction "The Story of the Millions Missing" Preview Party
The preview will include the history of Millions Missing and a gallery of pillowcases from the 2023 demonstration. The event will be recorded for those who cannot join.
Sunday, September 24, noon PDT / 3:00 pm EDT / 8:00 pm BST
Article | Thread
...........
Go to the next post for the sections on research news and research.
Week beginning 18th September 2023
Part 2 of 2
Research news
Norway The research council of Norway has allocated 11 million NOK (approximately $1 million) to a study titled "Impaired microcirculation and tissue hypoxia as a possible mechanism in ME/CFS". The study is led by Professor Karl Johan Tronstad in cooperation with Professors Øystein Fluge and Olav Mella.
Article by research news site l Thread
UK DecodeME One year after launch, the DecodeME team has announced the end point for recruitment:
"...you have until the 15th of November 2023 to complete your online questionnaire." The registration portal will be closed at 5pm on that date.
"Final deadline for posting [spit kits] back to DecodeME is the 31st of January 2024."
"...we still need more people, and this is the last chance to be part of this ground-breaking study. So, if you, or someone you know, are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME/CFS.."
Spread the word | Take part | Thread
Independent Major study hopes to tackle ME stigma
"Researchers behind the world’s largest study of chronic fatigue syndrome, also known as ME, are hoping to tackle the “stigma” associated with the disease as well as working towards potential treatment.
It comes as the team behind DecodeME urged more people living with myalgic encephalomyelitis (ME) to sign up as a participant before the November deadline."
Article | STV news article | Thread
...........
Research
ME/CFS research
Autoimmunity Reviews
Understanding, diagnosing, and treating [ME/CFS] – State of the art: Report of the 2nd international meeting at the Charité fatigue center - Steiner et al.
"Key topics from the conference included: the role of the immune system, dysfunction of endothelial and autonomic nervous system, and viral reactivation." The rise in ME/CFS cases due to Covid-19 and the lack of sufficient research funding are also raised.
Article | Thread
Long Covid research
The Lancet Respiratory Medicine
Multiorgan MRI findings after hospitalisation with COVID-19 in the UK (C-MORE): a prospective, multicentre, observational cohort study — J K Baillie et al.
“Multiorgan abnormalities on MRI were more frequent in patients than in controls (157 [61%] of 259 vs 14 [27%] of 52; p<0·0001) and independently associated with COVID-19 status (odds ratio [OR] 2·9 [95% CI 1·5–5·8]; padjusted=0·0023) after adjusting for relevant confounders.”
Article | Thread
International Journal of Infectious Diseases
Association between virus variants, vaccination, previous infections, and post-COVID-19 risk — Diexer et al.
“While infection with Omicron is less likely to result in PCC compared with previous variants, lack of protection by vaccination suggests a substantial challenge for the healthcare system during the early endemic period.”
Article | Thread
International Journal of Infectious Diseases
Vaccination after developing long COVID: impact on clinical presentation, viral persistence and immune responses — Maryam Nayyerabadi et al.
“Our study shows higher pro-inflammatory responses associated with PCC symptoms and brings forward a possible role for vaccination in mitigating PCC symptoms by decreasing systemic inflammation. We also observed persistence of viral products independent of vaccination that could be involved in perpetuating inflammation through non-classical monocytes.”
Article | Thread
Genome Medicine
SARS-CoV-2 infection induces a long-lived pro-inflammatory transcriptional profile — Zhang et al.
“A key finding was the observation that the transcriptional changes in COVID-19 patients were associated with the activation of the NF-kB signalling pathway, which is consistent with its previously identified role in severe COVID-19 patients”
Article | Thread
Journal of Medical virology
Exploring the mechanisms of long COVID: Insights from computational analysis of SARS-CoV-2 gene expression and symptom associations — Sanisha Das and Suresh Kumar
“In this study, we utilized computational methods to examine the gene expression profiles of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection and their associations with the wide range of symptoms observed in long COVID patients.”
Article | Thread
PNAS Nexus
Severe acute respiratory syndrome coronavirus 2 infection leads to Tau pathological signature in neurons — Di Primio et al.
“Our data support the hypothesis that SARS-CoV-2 infection in the central nervous system triggers downstream effects altering Tau function, eventually leading to the impairment of neuronal function.“
Article | Thread
mBio
Early antibody treatment, inflammation, and risk of post-COVID conditions — Kelly A. Gebo et al.
“In a secondary analysis of a randomized clinical trial, this study demonstrates that among outpatients with SARS-CoV-2, increased IL-6 at time of infection is associated with increased odds of PCC.”
Article | Thread
eBioMedicine
Long-COVID cognitive impairments and reproductive hormone deficits in men may stem from GnRH neuronal death — Sauve et al.
“We explored the hormonal profile of COVID-19 patients and targets of SARS-CoV-2 infection in post-mortem patient brains and human fetal tissue.”
Article | Thread
Journal of Translational Medicine
Epstein–Barr virus-acquired immunodeficiency in myalgic encephalomyelitis—Is it present in long COVID? — Ruiz-Pablos et al.
Hypothesis paper discussing the role of EBV in long Covid.
Article | Thread
...............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research news
Norway The research council of Norway has allocated 11 million NOK (approximately $1 million) to a study titled "Impaired microcirculation and tissue hypoxia as a possible mechanism in ME/CFS". The study is led by Professor Karl Johan Tronstad in cooperation with Professors Øystein Fluge and Olav Mella.
Article by research news site l Thread
UK DecodeME One year after launch, the DecodeME team has announced the end point for recruitment:
"...you have until the 15th of November 2023 to complete your online questionnaire." The registration portal will be closed at 5pm on that date.
"Final deadline for posting [spit kits] back to DecodeME is the 31st of January 2024."
"...we still need more people, and this is the last chance to be part of this ground-breaking study. So, if you, or someone you know, are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME/CFS.."
Spread the word | Take part | Thread
Independent Major study hopes to tackle ME stigma
"Researchers behind the world’s largest study of chronic fatigue syndrome, also known as ME, are hoping to tackle the “stigma” associated with the disease as well as working towards potential treatment.
It comes as the team behind DecodeME urged more people living with myalgic encephalomyelitis (ME) to sign up as a participant before the November deadline."
Article | STV news article | Thread
...........
Research
ME/CFS research
Autoimmunity Reviews
Understanding, diagnosing, and treating [ME/CFS] – State of the art: Report of the 2nd international meeting at the Charité fatigue center - Steiner et al.
"Key topics from the conference included: the role of the immune system, dysfunction of endothelial and autonomic nervous system, and viral reactivation." The rise in ME/CFS cases due to Covid-19 and the lack of sufficient research funding are also raised.
Article | Thread
Long Covid research
The Lancet Respiratory Medicine
Multiorgan MRI findings after hospitalisation with COVID-19 in the UK (C-MORE): a prospective, multicentre, observational cohort study — J K Baillie et al.
“Multiorgan abnormalities on MRI were more frequent in patients than in controls (157 [61%] of 259 vs 14 [27%] of 52; p<0·0001) and independently associated with COVID-19 status (odds ratio [OR] 2·9 [95% CI 1·5–5·8]; padjusted=0·0023) after adjusting for relevant confounders.”
Article | Thread
International Journal of Infectious Diseases
Association between virus variants, vaccination, previous infections, and post-COVID-19 risk — Diexer et al.
“While infection with Omicron is less likely to result in PCC compared with previous variants, lack of protection by vaccination suggests a substantial challenge for the healthcare system during the early endemic period.”
Article | Thread
International Journal of Infectious Diseases
Vaccination after developing long COVID: impact on clinical presentation, viral persistence and immune responses — Maryam Nayyerabadi et al.
“Our study shows higher pro-inflammatory responses associated with PCC symptoms and brings forward a possible role for vaccination in mitigating PCC symptoms by decreasing systemic inflammation. We also observed persistence of viral products independent of vaccination that could be involved in perpetuating inflammation through non-classical monocytes.”
Article | Thread
Genome Medicine
SARS-CoV-2 infection induces a long-lived pro-inflammatory transcriptional profile — Zhang et al.
“A key finding was the observation that the transcriptional changes in COVID-19 patients were associated with the activation of the NF-kB signalling pathway, which is consistent with its previously identified role in severe COVID-19 patients”
Article | Thread
Journal of Medical virology
Exploring the mechanisms of long COVID: Insights from computational analysis of SARS-CoV-2 gene expression and symptom associations — Sanisha Das and Suresh Kumar
“In this study, we utilized computational methods to examine the gene expression profiles of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection and their associations with the wide range of symptoms observed in long COVID patients.”
Article | Thread
PNAS Nexus
Severe acute respiratory syndrome coronavirus 2 infection leads to Tau pathological signature in neurons — Di Primio et al.
“Our data support the hypothesis that SARS-CoV-2 infection in the central nervous system triggers downstream effects altering Tau function, eventually leading to the impairment of neuronal function.“
Article | Thread
mBio
Early antibody treatment, inflammation, and risk of post-COVID conditions — Kelly A. Gebo et al.
“In a secondary analysis of a randomized clinical trial, this study demonstrates that among outpatients with SARS-CoV-2, increased IL-6 at time of infection is associated with increased odds of PCC.”
Article | Thread
eBioMedicine
Long-COVID cognitive impairments and reproductive hormone deficits in men may stem from GnRH neuronal death — Sauve et al.
“We explored the hormonal profile of COVID-19 patients and targets of SARS-CoV-2 infection in post-mortem patient brains and human fetal tissue.”
Article | Thread
Journal of Translational Medicine
Epstein–Barr virus-acquired immunodeficiency in myalgic encephalomyelitis—Is it present in long COVID? — Ruiz-Pablos et al.
Hypothesis paper discussing the role of EBV in long Covid.
Article | Thread
...............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 25th September 2023
Part 1 of 2
News, articles and advocacy
Science for ME letters to Cochrane and petition update
Cochrane has replied - but don't get excited yet
"We wrote another open letter to Cochrane ... emphasising the need for urgent action. We have today, 30th September, received a brief reply from Cochrane..." The reply says the IAG has restarted work after a hiatus and will be reporting "in the next few weeks". "The Science for ME committee and staff will continue to support this petition and related advocacy actions until Cochrane no longer provides a platform for a poorly executed and biased review of exercise therapies for CFS or ME/CFS."
So far over 8000 people have signed the petition, with over 500 adding comments, many describing long lasting harm from exercise therapy. Over 30 organisations have signed in support of the letter.
Petition | Petition thread | Thread with the letters | Organisations supporting the letter
UK Government Open consultation closes this week
Improving the experiences of people with ME/CFS: interim delivery plan
"We're seeking your views on an interim delivery plan to improve the experiences and outcomes of people with ME/CFS. This consultation closes at
11:59pm on 4 October 2023."
There is an easy read version with simplified questionnaire that can be submitted up to 30th October.
The ME Association, Physios for ME and MERUK have published their responses.
Website | Plan | Consultation | Easy read version | MEA | Physios for ME |
ME Research UK | Thread
Norway The Chief of Defence Eirik Kristoffersen is married to Linn Therece Kristoffersen who suffers from ME, and has written an honest and moving opinion piece in a medical newspaper about having to adjust to a very different life. He calls those who are living with ME sufferers to get more involved with the cause, gain more knowledge and raise awareness.
Opinion piece l Thread
Denmark The newspaper B.T. writes about the terrible story to severe ME sufferer Morten Brandt who recently passed. Due to this disease being viewed as a"functional disorder" in Denmark, Morten was refused help and advised to go for a walk when he no longer was able to control his muscles or eat. The newspaper writes that during the last year they have been in contact with more than 200 carers and patients who tell the same story about failure from the Danish health system leading to deterioration for the patients.
Article l Thread
.............
Research news and commentary
Aotearoa New Zealand Evidence-based management of Long COVID
The Health Research Council has awarded a NZD 1.4m grant for a three year project. The multidisciplinary team includes immunology, epidemiology, and patient co-design expertise, aiming to provide diagnostics and evidence-based guidelines for primary care.
HRC Announcement | Thread
Germany
The German Federal Ministry of Education and Research (BMBF) has published a new call '"to promote interdisciplinary collaborations to research the pathomechanisms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)." The aim is to research the pathomechanisms of post-infectious ME/CFS in more detail.
Article | Thread
The Netherlands
ZonMw, The Netherlands Organisation for Health Research and Development, has published a short update on the ME/CFS program. Sjaak de Gouw will be the new chair of the program.
Article | Thread
Norway A research project (Tjenesten og Meg) on ME patient's meeting with the health care services has ended after five years. Results were presented at a seminar this week. A short report with a summary of the project was released and several academic publications are one their way. In short the health care services are not offering useful measures for this patient group, and even lead to deterioration.
Thread with more information
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 must be submitted by 15th November. Saliva samples for DNA extraction sent by post by the end of January 2024. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
David Tuller David Putrino on the findings from the new Nature study of long Covid immune profiling
An interesting interview on the study "Distinguishing features of Long COVID identified through immune profiling (see item below). They also discuss other issues at ME/CFS, MUS, vaccine injuries and more.
Interview l Thread
Science "Anthony Fauci on becoming the ‘devil’ and a warning for his successor"
Interview with Anthony Fauci, former head of the National Institute of Allergy and Infectious Diseases (NIAID). He mentions "myalgic encephalitis/chronic fatigue syndrome" (sic) briefly.
Article | Thread
Scandinavian Journal of Primary Health Care
Chronic fatigue syndromes: real illnesses that people can recover from - The Oslo Chronic Fatigue Consortium
A group of researchers who favour a psychosomatic approach to ME/CFS and fatigue syndromes wrote a statement outlining their position and theory. They argue that "recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms." The paper, however, has received a lot of criticism from forum members.
Article | Thread
ME Association Statement by Dr Charles Shepherd and Russell Fleming
Oslo Chronic Fatigue Consortium 'New Hope' is "More Unhelpful Nonsense"!
"This latest effort from Norway appears to confirm that a concerted effort is underway from a handful of professionals – some of whom have clear conflicts of interest – that are once again trying to self-aggrandise at the expense of people who have been maligned and stigmatised."
Article | Thread
............
In memory
Celine Corsius
Dutch ME/CFS patient and advocate Celine Corsius has sadly passed away. She was a beloved member of the online ME/CFS community. Many have have expressed their mourning and condolences on social media.
Thread
Janice Kent
From a UK ME Association article:
"We are very sorry to have to report that Janice Kent, who became a tower of strength for people with ME/CFS after founding the reMEmber group with husband Bill, died peacefully in hospital after a short illness on 18th September. For their impact on the ME/CFS world both locally in Mid-Sussex and nationally, reMEmber received The Queen’s Award for Voluntary Service in 2015."
Article | Thread (members only)
................
Coming events
USA - Society to Improve Diagnosis in Medicine’s (SIDM) Conference
October 8-11, Cleveland, Ohio
A free, live-streamed Patient Summit (Celebrating Patient-Initiated Innovations in Improving Diagnosis) will be held Monday, October 9th, 10:15 am to 12:15 pm Eastern. Jaime Seltzer from #MEAction will talk about decreasing diagnostic uncertainty in ME/CFS. Preregistration required.
Patient Summit | Registration | Thread
USA - NIH ME/CFS Research Roadmap
Thursday, October 19, 8 AM Pacific / 11 AM Eastern
The second webinar in this series is on the Immune System. Agenda still to come. This webinar will be recorded and posted online, with a transcript, after the event.
Agendas | Registration | Thread
USA - Infection Associated Chronic Conditions Patient Advocacy Coalition Initiative Webinar
Tuesday, October 24, 9 AM Pacific / Noon Eastern
At this webinar the IACC-Patient Advocacy Coalition will present "findings from a new report about the needs and priorities of the infection-associated chronic conditions community."
Details | Registration | Thread
USA - The Untreated Epidemic: Understanding and Treating Long Covid and ME/CFS
Monday, November 6, Concord, New Hampshire
A free conference hosted by #MEAction New Hampshire. Speakers include Lucinda Bateman from Bateman Horne Center and Lisa McCorkell from Patient-Led Research Collaborative. In person and virtual attendance options.
Details | Registration | Thread
USA - New Developments in Understanding Chronic Illnesses: The Role of Immune Dysfunction and Infections
November 8-10, Washington, DC
Ron Davis of Stanford University, Maureen Hansen of Cornell University, and Avindra Nath of the NIH, are scheduled to present.
Details | Thread
Australia - International Conference
9-10 November 2023
Research, Innovation and Discovery ME/CFS and Long Covid, organised by the Griffith University National Centre for Neuroimmunology and Emerging Diseases. Abstract submissions by 4th October.
Registration | Thread
USA - NIH Symposium For Promoting The Advancement Of Research Knowledge In ME/CFS (SPARK ME)
Monday, December 11, NIH Campus
This meeting is for "early career researchers to come together to network, learn about ongoing research on ME/CFS, and funding opportunities at NIH and the patient advocacy organizations." Registration deadline is October 31, 2023.
Details | Thread
...............
For research go to the next post
Part 1 of 2
News, articles and advocacy
Science for ME letters to Cochrane and petition update
Cochrane has replied - but don't get excited yet
"We wrote another open letter to Cochrane ... emphasising the need for urgent action. We have today, 30th September, received a brief reply from Cochrane..." The reply says the IAG has restarted work after a hiatus and will be reporting "in the next few weeks". "The Science for ME committee and staff will continue to support this petition and related advocacy actions until Cochrane no longer provides a platform for a poorly executed and biased review of exercise therapies for CFS or ME/CFS."
So far over 8000 people have signed the petition, with over 500 adding comments, many describing long lasting harm from exercise therapy. Over 30 organisations have signed in support of the letter.
Petition | Petition thread | Thread with the letters | Organisations supporting the letter
UK Government Open consultation closes this week
Improving the experiences of people with ME/CFS: interim delivery plan
"We're seeking your views on an interim delivery plan to improve the experiences and outcomes of people with ME/CFS. This consultation closes at
11:59pm on 4 October 2023."
There is an easy read version with simplified questionnaire that can be submitted up to 30th October.
The ME Association, Physios for ME and MERUK have published their responses.
Website | Plan | Consultation | Easy read version | MEA | Physios for ME |
ME Research UK | Thread
Norway The Chief of Defence Eirik Kristoffersen is married to Linn Therece Kristoffersen who suffers from ME, and has written an honest and moving opinion piece in a medical newspaper about having to adjust to a very different life. He calls those who are living with ME sufferers to get more involved with the cause, gain more knowledge and raise awareness.
Opinion piece l Thread
Denmark The newspaper B.T. writes about the terrible story to severe ME sufferer Morten Brandt who recently passed. Due to this disease being viewed as a"functional disorder" in Denmark, Morten was refused help and advised to go for a walk when he no longer was able to control his muscles or eat. The newspaper writes that during the last year they have been in contact with more than 200 carers and patients who tell the same story about failure from the Danish health system leading to deterioration for the patients.
Article l Thread
.............
Research news and commentary
Aotearoa New Zealand Evidence-based management of Long COVID
The Health Research Council has awarded a NZD 1.4m grant for a three year project. The multidisciplinary team includes immunology, epidemiology, and patient co-design expertise, aiming to provide diagnostics and evidence-based guidelines for primary care.
HRC Announcement | Thread
Germany
The German Federal Ministry of Education and Research (BMBF) has published a new call '"to promote interdisciplinary collaborations to research the pathomechanisms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)." The aim is to research the pathomechanisms of post-infectious ME/CFS in more detail.
Article | Thread
The Netherlands
ZonMw, The Netherlands Organisation for Health Research and Development, has published a short update on the ME/CFS program. Sjaak de Gouw will be the new chair of the program.
Article | Thread
Norway A research project (Tjenesten og Meg) on ME patient's meeting with the health care services has ended after five years. Results were presented at a seminar this week. A short report with a summary of the project was released and several academic publications are one their way. In short the health care services are not offering useful measures for this patient group, and even lead to deterioration.
Thread with more information
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 must be submitted by 15th November. Saliva samples for DNA extraction sent by post by the end of January 2024. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
David Tuller David Putrino on the findings from the new Nature study of long Covid immune profiling
An interesting interview on the study "Distinguishing features of Long COVID identified through immune profiling (see item below). They also discuss other issues at ME/CFS, MUS, vaccine injuries and more.
Interview l Thread
Science "Anthony Fauci on becoming the ‘devil’ and a warning for his successor"
Interview with Anthony Fauci, former head of the National Institute of Allergy and Infectious Diseases (NIAID). He mentions "myalgic encephalitis/chronic fatigue syndrome" (sic) briefly.
Article | Thread
Scandinavian Journal of Primary Health Care
Chronic fatigue syndromes: real illnesses that people can recover from - The Oslo Chronic Fatigue Consortium
A group of researchers who favour a psychosomatic approach to ME/CFS and fatigue syndromes wrote a statement outlining their position and theory. They argue that "recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms." The paper, however, has received a lot of criticism from forum members.
Article | Thread
ME Association Statement by Dr Charles Shepherd and Russell Fleming
Oslo Chronic Fatigue Consortium 'New Hope' is "More Unhelpful Nonsense"!
"This latest effort from Norway appears to confirm that a concerted effort is underway from a handful of professionals – some of whom have clear conflicts of interest – that are once again trying to self-aggrandise at the expense of people who have been maligned and stigmatised."
Article | Thread
............
In memory
Celine Corsius
Dutch ME/CFS patient and advocate Celine Corsius has sadly passed away. She was a beloved member of the online ME/CFS community. Many have have expressed their mourning and condolences on social media.
Thread
Janice Kent
From a UK ME Association article:
"We are very sorry to have to report that Janice Kent, who became a tower of strength for people with ME/CFS after founding the reMEmber group with husband Bill, died peacefully in hospital after a short illness on 18th September. For their impact on the ME/CFS world both locally in Mid-Sussex and nationally, reMEmber received The Queen’s Award for Voluntary Service in 2015."
Article | Thread (members only)
................
Coming events
USA - Society to Improve Diagnosis in Medicine’s (SIDM) Conference
October 8-11, Cleveland, Ohio
A free, live-streamed Patient Summit (Celebrating Patient-Initiated Innovations in Improving Diagnosis) will be held Monday, October 9th, 10:15 am to 12:15 pm Eastern. Jaime Seltzer from #MEAction will talk about decreasing diagnostic uncertainty in ME/CFS. Preregistration required.
Patient Summit | Registration | Thread
USA - NIH ME/CFS Research Roadmap
Thursday, October 19, 8 AM Pacific / 11 AM Eastern
The second webinar in this series is on the Immune System. Agenda still to come. This webinar will be recorded and posted online, with a transcript, after the event.
Agendas | Registration | Thread
USA - Infection Associated Chronic Conditions Patient Advocacy Coalition Initiative Webinar
Tuesday, October 24, 9 AM Pacific / Noon Eastern
At this webinar the IACC-Patient Advocacy Coalition will present "findings from a new report about the needs and priorities of the infection-associated chronic conditions community."
Details | Registration | Thread
USA - The Untreated Epidemic: Understanding and Treating Long Covid and ME/CFS
Monday, November 6, Concord, New Hampshire
A free conference hosted by #MEAction New Hampshire. Speakers include Lucinda Bateman from Bateman Horne Center and Lisa McCorkell from Patient-Led Research Collaborative. In person and virtual attendance options.
Details | Registration | Thread
USA - New Developments in Understanding Chronic Illnesses: The Role of Immune Dysfunction and Infections
November 8-10, Washington, DC
Ron Davis of Stanford University, Maureen Hansen of Cornell University, and Avindra Nath of the NIH, are scheduled to present.
Details | Thread
Australia - International Conference
9-10 November 2023
Research, Innovation and Discovery ME/CFS and Long Covid, organised by the Griffith University National Centre for Neuroimmunology and Emerging Diseases. Abstract submissions by 4th October.
Registration | Thread
USA - NIH Symposium For Promoting The Advancement Of Research Knowledge In ME/CFS (SPARK ME)
Monday, December 11, NIH Campus
This meeting is for "early career researchers to come together to network, learn about ongoing research on ME/CFS, and funding opportunities at NIH and the patient advocacy organizations." Registration deadline is October 31, 2023.
Details | Thread
...............
For research go to the next post
Week beginning 25th September 2023
Part 2 of 2
Research
ME/CFS research
Metabolites
Bayesian Statistics Improves Biological Interpretability of Metabolomics Data from Human Cohorts - Brydges et al.
"We use metabolomics data from three independent human cohorts that studied plasma signatures of subjects with [ME/CFS)]." Differences found included compounds related to diet and medication in people with ME/CFS, and "We also found that prostaglandin F2alpha, a lipid mediator of physiological relevance, was significantly reduced in ME/CFS patients across all three studies." The authors conclude by recommending the use of Bayesian statistics on metabolomics data.
Article | Thread
Preprint
Long read sequencing characterises a novel structural variant, revealing underactive AKR1C1 with overactive AKR1C2 as a possible cause of unexplained severe fatigue - Oakley et al.
Detailed genetic study of a patient with ME/CFS found a novel structural variant: "The DNA inversion appears to increase the expression of AKR1C2 while limiting AKR1C1 activity, resulting in a relative increase of inhibitory neurosteroids and impaired progesterone metabolism." The authors say this shows the value of long read sequencing in diagnosis.
Preprint | Thread
The University Of Sheffield
Distress and Coping in ME/CFS: Understanding the Role of Perfectionism and Self-compassion - Alexandra Leigh Houston
This doctorate thesis on clinical psychology investigated how different ways of coping relate to psychological distress in ME/CFS.
Thesis | Thread
Epidemiology & Infection
Long-term health outcomes of Q-fever fatigue syndrome patients - Spronk et al.
This study determined the long-term health outcomes (≥10 years) of 368 patients with Q-fever fatigue syndrome. Their health-related quality of life was low with a EQ-5D-5L index of 0.63. 98.9% of patients experienced post-exertional malaise complaints.
Article | Thread
Preprints.org
Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire - Sommerfelt et al.
The authors have developed a new questionnaire to measure the functional capacity in ME/CFS. It covers eight domains and activity types and queries how these affect a patient's ability to function and do other activities.
Article | Thread
Long Covid research
Nature
Distinguishing features of Long COVID identified through immune profiling — Jon Klein et al.
“In summary, significant biological differences were identified between participants with LC and demographically and medically matched CC and HC participants, validating extensive reports of persistent symptoms by various individuals with LC and patient advocacy groups.”
Article | Thread
Clinical Infectious Diseases
Long-term Cardiovascular, Cerebrovascular, and Other Thrombotic Complications in Coronavirus Disease 2019 Survivors: A Retrospective Cohort Study — Lim et al.
“We included 106 012 infected cases and 1 684 085 test-negative controls. Compared with the control group, individuals with COVID-19 exhibited increased risk (HR, 1.157 [1.069–1.252]) and excess burden (EB, 0.70 [.53–.88]) of new-incident cardiovascular and cerebrovascular complications.
Article | Thread
Frontiers in Cardiovascular Medicine
Cardiovascular autonomic dysfunction in “Long COVID”: pathophysiology, heart rate variability, and inflammatory markers — Marques et al.
“The objective of this review was to provide information on long-term cardiovascular autonomic dysfunction in patients with Long COVID and its impact on morbidity and mortality in this patient population.”
Article | Thread
Nature Scientific Reports
Autonomic dysregulation in long-term patients suffering from Post-COVID-19 Syndrome assessed by heart rate variability — Mooren et al.
“Our data demonstrate persistent HRV alterations in PCS patients with long-term symptom duration, suggesting a sustained impairment of sympathovagal balance.”
Article | Thread
Experimental Physiology
Carotid stiffness, intima–media thickness and aortic augmentation index among adults with SARS-CoV-2 — Rachel E. Szeghy et al.
“This cross-sectional analysis revealed higher carotid artery stiffness and aortic stiffness among young adults with SARS-CoV-2.”
Article | Thread
Nature Cardiovascular Research
SARS-CoV-2 infection triggers pro-atherogenic inflammatory responses in human coronary vessels — Eberhardt et al.
“Here we report that SARS-CoV-2 viral RNA is detectable and replicates in coronary lesions taken at autopsy from severe COVID-19 cases.” “SARS-CoV-2 entry was increased in cholesterol-loaded primary macrophages and dependent, in part, on neuropilin-1.”
Article | Thread
Lancet: eClinicalMedicine
Characterization of long COVID temporal sub-phenotypes by distributed representation learning from electronic health record data: a cohort study — Arianna Dagliati et al.
“Based on data from multiple institutions, we estimated that approximately 15 percent (11%–20%) of hospitalized COVID-19 patients will have at least one PASC complication and approximately five percent (4%–8%) will have multiple problems.”
Article | Thread
Microbiology Spectrum
Tonsils are major sites of persistence of SARS-CoV-2 in children — Thais Melquiades de Lima et al.
“In the present study, we show that SARS-CoV-2 can infect palatine tonsils, adenoids, and secretions in children without symptoms of COVID-19, with no history of recent upper airway infection. We studied 48 children undergoing tonsillectomy due to snoring/OSA or recurrent tonsillitis between October 2020 and September 2021.”
Article | Thread
Children
Atopy and Elevation of IgE, IgG3, and IgG4 May Be Risk Factors for Post COVID-19 Condition in Children and Adolescents — Körner et al.
“Concurrent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) was found in 29% of patients that also faced challenges in school attendance. ME/CFS manifestation was significantly associated with elevated immunoglobulin G subclasses IgG3 (p < 0.05) and IgG4 (p < 0.05).”
Article | Thread
BMJ Open
Impact of Long Covid on the school experiences of children and young people: a qualitative study — Alice MacLean et al.
“Attending school (in-person or online) with LC is extremely difficult; even a gradual return required CYP to balance the impact of being at and engaging with school, with the need to manage symptoms to prevent relapse. Often this meant prioritising school and rest over other aspects of their lives.”
Article | Thread
Frontiers in Immunology
Neutrophil extracellular traps and long COVID — Shafqat et al.
“In this review, we discuss the emerging role of neutrophil extracellular traps (NETs) in the persistent inflammatory response observed in long COVID patients.”
Article | Thread
Food Science & Nutrition
Effects of six-month creatine supplementation on patient- and clinician-reported outcomes, and tissue creatine levels in patients with post-COVID-19 fatigue syndrome — Jelena Slankamenac et al.
“This is the first human study known to the authors that evaluated the efficacy and safety of supplemental creatine for fatigue, tissue bioenergetics, and patient-reported outcomes in patients with post-COVID-19 fatigue syndrome.”
Article | Thread
Neurological Research and Practice
No evidence for neuronal damage or astrocytic activation in cerebrospinal fluid of Neuro-COVID-19 patients with long-term persistent headache — de Boni et al.
“[O]ur pilot study of CSF markers indicates that persistent post-COVID-19 headache is not a sign of underlying neuronal damage or glial activation.”
Article | Thread
Quality of Life Research
Long COVID quality of life and healthcare experiences in the UK: a mixed method online survey — Owen et al.
“Within our sample of 132 people living with long COVID, the findings highlight that individuals are being severely impacted by their symptoms and are unable to or limited in participating in their daily activities, reducing quality of life.”
Article | Thread
eLife
The importance of patient-partnered research in addressing long COVID: Takeaways for biomedical research study design from the RECOVER Initiative’s Mechanistic Pathways taskforce — C Kim et al.
“We emphasize the challenges of balancing urgency with scientific rigor. We recognize the importance of such partnerships in addressing post-acute sequelae of SARS-CoV-2 infection (PASC), which includes ‘long COVID,’ through contrasting objective and subjective narratives.”
Article | Thread
Nature Communications
Predictors of the post-COVID condition following mild SARS-CoV-2 infection — Reme et al.
“In this observational study of ~214,000 individuals with confirmed COVID-19, we found that pre-pandemic health care utilization related to psychological, respiratory, and general/unspecified health problems were the strongest predictors for having a doctor-diagnosed post-COVID condition between 90 and 180 days after the initial infection.”
Article | Thread
Preprint: MedRxiv
Vaccine Effectiveness Against Long COVID in Children: A Report from the RECOVER EHR Cohort — Hanieh Razzaghi et al.
“This large retrospective study shows a moderate protective effect of SARS-CoV-2 vaccination against long COVID. The effect is stronger in adolescents, who have higher risk of long COVID, and wanes over time.”
Article | Thread
Nature npj Vaccines
Effect of monovalent COVID-19 vaccines on viral interference between SARS-CoV-2 and several DNA viruses in patients with long-COVID syndrome — Gyöngyösi et al.
“[T]he results of our clinical investigation provide the first demonstration of reactivation of several DNA viruses after SARS-CoV-2 infection (viral cross-talk or interference). We further show the interruption of this viral cross-talk by anti-SARS-CoV-2 vaccination in patients with long-COVID syndrome.”
Article | Thread
................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research
ME/CFS research
Metabolites
Bayesian Statistics Improves Biological Interpretability of Metabolomics Data from Human Cohorts - Brydges et al.
"We use metabolomics data from three independent human cohorts that studied plasma signatures of subjects with [ME/CFS)]." Differences found included compounds related to diet and medication in people with ME/CFS, and "We also found that prostaglandin F2alpha, a lipid mediator of physiological relevance, was significantly reduced in ME/CFS patients across all three studies." The authors conclude by recommending the use of Bayesian statistics on metabolomics data.
Article | Thread
Preprint
Long read sequencing characterises a novel structural variant, revealing underactive AKR1C1 with overactive AKR1C2 as a possible cause of unexplained severe fatigue - Oakley et al.
Detailed genetic study of a patient with ME/CFS found a novel structural variant: "The DNA inversion appears to increase the expression of AKR1C2 while limiting AKR1C1 activity, resulting in a relative increase of inhibitory neurosteroids and impaired progesterone metabolism." The authors say this shows the value of long read sequencing in diagnosis.
Preprint | Thread
The University Of Sheffield
Distress and Coping in ME/CFS: Understanding the Role of Perfectionism and Self-compassion - Alexandra Leigh Houston
This doctorate thesis on clinical psychology investigated how different ways of coping relate to psychological distress in ME/CFS.
Thesis | Thread
Epidemiology & Infection
Long-term health outcomes of Q-fever fatigue syndrome patients - Spronk et al.
This study determined the long-term health outcomes (≥10 years) of 368 patients with Q-fever fatigue syndrome. Their health-related quality of life was low with a EQ-5D-5L index of 0.63. 98.9% of patients experienced post-exertional malaise complaints.
Article | Thread
Preprints.org
Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire - Sommerfelt et al.
The authors have developed a new questionnaire to measure the functional capacity in ME/CFS. It covers eight domains and activity types and queries how these affect a patient's ability to function and do other activities.
Article | Thread
Long Covid research
Nature
Distinguishing features of Long COVID identified through immune profiling — Jon Klein et al.
“In summary, significant biological differences were identified between participants with LC and demographically and medically matched CC and HC participants, validating extensive reports of persistent symptoms by various individuals with LC and patient advocacy groups.”
Article | Thread
Clinical Infectious Diseases
Long-term Cardiovascular, Cerebrovascular, and Other Thrombotic Complications in Coronavirus Disease 2019 Survivors: A Retrospective Cohort Study — Lim et al.
“We included 106 012 infected cases and 1 684 085 test-negative controls. Compared with the control group, individuals with COVID-19 exhibited increased risk (HR, 1.157 [1.069–1.252]) and excess burden (EB, 0.70 [.53–.88]) of new-incident cardiovascular and cerebrovascular complications.
Article | Thread
Frontiers in Cardiovascular Medicine
Cardiovascular autonomic dysfunction in “Long COVID”: pathophysiology, heart rate variability, and inflammatory markers — Marques et al.
“The objective of this review was to provide information on long-term cardiovascular autonomic dysfunction in patients with Long COVID and its impact on morbidity and mortality in this patient population.”
Article | Thread
Nature Scientific Reports
Autonomic dysregulation in long-term patients suffering from Post-COVID-19 Syndrome assessed by heart rate variability — Mooren et al.
“Our data demonstrate persistent HRV alterations in PCS patients with long-term symptom duration, suggesting a sustained impairment of sympathovagal balance.”
Article | Thread
Experimental Physiology
Carotid stiffness, intima–media thickness and aortic augmentation index among adults with SARS-CoV-2 — Rachel E. Szeghy et al.
“This cross-sectional analysis revealed higher carotid artery stiffness and aortic stiffness among young adults with SARS-CoV-2.”
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Nature Cardiovascular Research
SARS-CoV-2 infection triggers pro-atherogenic inflammatory responses in human coronary vessels — Eberhardt et al.
“Here we report that SARS-CoV-2 viral RNA is detectable and replicates in coronary lesions taken at autopsy from severe COVID-19 cases.” “SARS-CoV-2 entry was increased in cholesterol-loaded primary macrophages and dependent, in part, on neuropilin-1.”
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Lancet: eClinicalMedicine
Characterization of long COVID temporal sub-phenotypes by distributed representation learning from electronic health record data: a cohort study — Arianna Dagliati et al.
“Based on data from multiple institutions, we estimated that approximately 15 percent (11%–20%) of hospitalized COVID-19 patients will have at least one PASC complication and approximately five percent (4%–8%) will have multiple problems.”
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Microbiology Spectrum
Tonsils are major sites of persistence of SARS-CoV-2 in children — Thais Melquiades de Lima et al.
“In the present study, we show that SARS-CoV-2 can infect palatine tonsils, adenoids, and secretions in children without symptoms of COVID-19, with no history of recent upper airway infection. We studied 48 children undergoing tonsillectomy due to snoring/OSA or recurrent tonsillitis between October 2020 and September 2021.”
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Children
Atopy and Elevation of IgE, IgG3, and IgG4 May Be Risk Factors for Post COVID-19 Condition in Children and Adolescents — Körner et al.
“Concurrent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) was found in 29% of patients that also faced challenges in school attendance. ME/CFS manifestation was significantly associated with elevated immunoglobulin G subclasses IgG3 (p < 0.05) and IgG4 (p < 0.05).”
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BMJ Open
Impact of Long Covid on the school experiences of children and young people: a qualitative study — Alice MacLean et al.
“Attending school (in-person or online) with LC is extremely difficult; even a gradual return required CYP to balance the impact of being at and engaging with school, with the need to manage symptoms to prevent relapse. Often this meant prioritising school and rest over other aspects of their lives.”
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Frontiers in Immunology
Neutrophil extracellular traps and long COVID — Shafqat et al.
“In this review, we discuss the emerging role of neutrophil extracellular traps (NETs) in the persistent inflammatory response observed in long COVID patients.”
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Food Science & Nutrition
Effects of six-month creatine supplementation on patient- and clinician-reported outcomes, and tissue creatine levels in patients with post-COVID-19 fatigue syndrome — Jelena Slankamenac et al.
“This is the first human study known to the authors that evaluated the efficacy and safety of supplemental creatine for fatigue, tissue bioenergetics, and patient-reported outcomes in patients with post-COVID-19 fatigue syndrome.”
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Neurological Research and Practice
No evidence for neuronal damage or astrocytic activation in cerebrospinal fluid of Neuro-COVID-19 patients with long-term persistent headache — de Boni et al.
“[O]ur pilot study of CSF markers indicates that persistent post-COVID-19 headache is not a sign of underlying neuronal damage or glial activation.”
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Quality of Life Research
Long COVID quality of life and healthcare experiences in the UK: a mixed method online survey — Owen et al.
“Within our sample of 132 people living with long COVID, the findings highlight that individuals are being severely impacted by their symptoms and are unable to or limited in participating in their daily activities, reducing quality of life.”
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eLife
The importance of patient-partnered research in addressing long COVID: Takeaways for biomedical research study design from the RECOVER Initiative’s Mechanistic Pathways taskforce — C Kim et al.
“We emphasize the challenges of balancing urgency with scientific rigor. We recognize the importance of such partnerships in addressing post-acute sequelae of SARS-CoV-2 infection (PASC), which includes ‘long COVID,’ through contrasting objective and subjective narratives.”
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Nature Communications
Predictors of the post-COVID condition following mild SARS-CoV-2 infection — Reme et al.
“In this observational study of ~214,000 individuals with confirmed COVID-19, we found that pre-pandemic health care utilization related to psychological, respiratory, and general/unspecified health problems were the strongest predictors for having a doctor-diagnosed post-COVID condition between 90 and 180 days after the initial infection.”
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Preprint: MedRxiv
Vaccine Effectiveness Against Long COVID in Children: A Report from the RECOVER EHR Cohort — Hanieh Razzaghi et al.
“This large retrospective study shows a moderate protective effect of SARS-CoV-2 vaccination against long COVID. The effect is stronger in adolescents, who have higher risk of long COVID, and wanes over time.”
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Nature npj Vaccines
Effect of monovalent COVID-19 vaccines on viral interference between SARS-CoV-2 and several DNA viruses in patients with long-COVID syndrome — Gyöngyösi et al.
“[T]he results of our clinical investigation provide the first demonstration of reactivation of several DNA viruses after SARS-CoV-2 infection (viral cross-talk or interference). We further show the interruption of this viral cross-talk by anti-SARS-CoV-2 vaccination in patients with long-COVID syndrome.”
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