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News in Brief - October 2023
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Week beginning 2nd October 2023
Part 1 of 2
News and advocacy
Brazil The government has passed a law establishing care guidelines for fibromyalgia and "chronic fatigue" - waiting for final presidential approval.
Article | Thread
UK Government Work Capability Assessment: Open Consultation
Closing date for responses 30th October.
Government website with documents and ways to respond | Thread
Australia Petition Stop the ABC from broadcasting misinformation about ME/CFS
"The Australian Broadcasting Corporation (ABC) continues to broadcast dangerous and discredited views regarding [ME/CFS] by its principal health reporter, Dr. Norman Swan."
Petition | Thread
Petition to Cochrane Withdraw the harmful 2019 Exercise therapy for CFS review
The Science for ME petition that enables people to support Science for ME's open letters to Cochrane requesting immediate action on this review and its stalled replacement will remain open until there is no longer a review in support of GET hosted by Cochrane. The S4ME committee will continue to campaign for action by Cochrane until this issue is resolved, and encourage other ME organisations, clinicians and researchers to show their support.
Petition | Petition thread | Letter thread
UK Government ME/CFS Delivery Plan - Open consultation
Submissions to the main consultation have closed, but the easy read version is open for submissions until 30th October.
Website | Plan | Consultation | Easy read version | Thread
Some organisations have published their submissions:
ME Association | Physios for ME | ME Research UK
#MEAction UK | Action for ME | #MEAction Scotland
..................
Articles and interviews
Emerge Australia Imagine Podcast Series Simone Eyssens
A highly recommended interview with the well-informed Emerge Australia's Research Director Simone Eyssens on her life with ME/CFS, what she's learned and how she copes. "This is a powerful and poignant conversation, where the personal becomes the professional, where an unexpected development drives home the message, and where we can be so grateful for Simone bringing her extensive knowledge of ME/CFS science and advocacy, as well as her lived experience of ME/CFS, to work for change for Australians living with ME/CFS and their carers."
Podcast l Thread
National Geographic What is POTS? This strange disorder has doubled since the pandemic
A good article about POTS and the need for re-evaluation of exercise as treatment. "Although exercise is considered to be a first-line treatment for POTS, in a survey of long COVID patients 89.5 percent of patients reported relapses after exertion, while other patients report difficulties with following some of the exercise protocols. As a result, the National Institute of Health and Care Excellence cautions against using graded exercise therapy for treating post-COVID fatigue." Also mentions overlap between Long COVID and ME/CFS.
Article l Thread
Trial by Error by David Tuller
"Celine Corsius - In Memoriam"
A translation into English of the eulogies to Céline Corsius by her family. The family lovingly present Céline's life story and fond memories of her, as well as discussing how ME/CFS is viewed in the Netherlands and what terrible consequences that had for her.
Article l Thread
"Norwegian Lightning Process Trial Ejects Questioning Participant"
An elaboration of patient advocate Nina E. Steinkopf's article about a currently ongoing and much disputed study on the alternative method Lightning Process as treatment for ME where a participant was ejected for not being sufficiently positive about the method. Tuller writes: "Dumping participants who investigators believe might not benefit from an intervention is an effective way to skew results toward the positive".
Article l Thread
Frøydis Lilledalen, psychologist and ME sufferer, has written a critical opinion piece in response to a press release from the "Oslo chronic fatigue consortium" (see last week's news) promoting a psychosomatic approach to ME and Long Covid. Lilledalen writes about problematic aspects with professional's beliefs and faith when the evidence point in a different direction.
Opinion piece (Norwegian) I Thread
ME Global Chronicle
Violation of the Dutch Code of Ethics for Psychologists with current CFS guideline – -part 2
Health psychologists M. Bloks and B. Khouri argue that the guideline on CFS which recommends cognitive behavioural therapy violates the Dutch Code of Ethics for psychologists.
Article | Thread
Sweden Interview with the Dutch researcher Hans Knoop, a well known proponent of the discredited psychosomatic view of ME/CFS, who in a recent talk at the Karolinska Institute presented a study on CBT as treatment for Long Covid by addressing sleep habits, increased activity and learning to deal with negative thoughts about tiredness, pain and worry. Psychologist and researcher Elin Lindsäter wants to do a similar study in Sweden with 500 participants.
Article l Thread
...........
Coming events
DecodeME Webinar This webinar will be a chance to hear updates about the study's progress and have your questions answered. Thursday 12th October, 1:00pm (BST) on Zoom and Facebook Live.
Spread the word | Take part | Thread
PolyBio Fall 2023 Symposium
Friday, October 20, 12:30 - 5:00 PM Eastern
The symposium schedule and list of speakers has been updated.
Details | Register | Thread
Webinar: Long Covid Misconceptions with Dr Charles Shepherd and People with Lived Experience. 11th November, 1pm UK time.
UK ME Association article about a webinar hosted by Bournemouth University open to the public. Part of the ESRC Festival of Social Science, an annual, UK-wide, free celebration of the social sciences.
Article with link for registration | Thread
...........
For Research news and research go to the next post.
Part 1 of 2
News and advocacy
Brazil The government has passed a law establishing care guidelines for fibromyalgia and "chronic fatigue" - waiting for final presidential approval.
Article | Thread
UK Government Work Capability Assessment: Open Consultation
Closing date for responses 30th October.
Government website with documents and ways to respond | Thread
Australia Petition Stop the ABC from broadcasting misinformation about ME/CFS
"The Australian Broadcasting Corporation (ABC) continues to broadcast dangerous and discredited views regarding [ME/CFS] by its principal health reporter, Dr. Norman Swan."
Petition | Thread
Petition to Cochrane Withdraw the harmful 2019 Exercise therapy for CFS review
The Science for ME petition that enables people to support Science for ME's open letters to Cochrane requesting immediate action on this review and its stalled replacement will remain open until there is no longer a review in support of GET hosted by Cochrane. The S4ME committee will continue to campaign for action by Cochrane until this issue is resolved, and encourage other ME organisations, clinicians and researchers to show their support.
Petition | Petition thread | Letter thread
UK Government ME/CFS Delivery Plan - Open consultation
Submissions to the main consultation have closed, but the easy read version is open for submissions until 30th October.
Website | Plan | Consultation | Easy read version | Thread
Some organisations have published their submissions:
ME Association | Physios for ME | ME Research UK
#MEAction UK | Action for ME | #MEAction Scotland
..................
Articles and interviews
Emerge Australia Imagine Podcast Series Simone Eyssens
A highly recommended interview with the well-informed Emerge Australia's Research Director Simone Eyssens on her life with ME/CFS, what she's learned and how she copes. "This is a powerful and poignant conversation, where the personal becomes the professional, where an unexpected development drives home the message, and where we can be so grateful for Simone bringing her extensive knowledge of ME/CFS science and advocacy, as well as her lived experience of ME/CFS, to work for change for Australians living with ME/CFS and their carers."
Podcast l Thread
National Geographic What is POTS? This strange disorder has doubled since the pandemic
A good article about POTS and the need for re-evaluation of exercise as treatment. "Although exercise is considered to be a first-line treatment for POTS, in a survey of long COVID patients 89.5 percent of patients reported relapses after exertion, while other patients report difficulties with following some of the exercise protocols. As a result, the National Institute of Health and Care Excellence cautions against using graded exercise therapy for treating post-COVID fatigue." Also mentions overlap between Long COVID and ME/CFS.
Article l Thread
Trial by Error by David Tuller
"Celine Corsius - In Memoriam"
A translation into English of the eulogies to Céline Corsius by her family. The family lovingly present Céline's life story and fond memories of her, as well as discussing how ME/CFS is viewed in the Netherlands and what terrible consequences that had for her.
Article l Thread
"Norwegian Lightning Process Trial Ejects Questioning Participant"
An elaboration of patient advocate Nina E. Steinkopf's article about a currently ongoing and much disputed study on the alternative method Lightning Process as treatment for ME where a participant was ejected for not being sufficiently positive about the method. Tuller writes: "Dumping participants who investigators believe might not benefit from an intervention is an effective way to skew results toward the positive".
Article l Thread
Frøydis Lilledalen, psychologist and ME sufferer, has written a critical opinion piece in response to a press release from the "Oslo chronic fatigue consortium" (see last week's news) promoting a psychosomatic approach to ME and Long Covid. Lilledalen writes about problematic aspects with professional's beliefs and faith when the evidence point in a different direction.
Opinion piece (Norwegian) I Thread
ME Global Chronicle
Violation of the Dutch Code of Ethics for Psychologists with current CFS guideline – -part 2
Health psychologists M. Bloks and B. Khouri argue that the guideline on CFS which recommends cognitive behavioural therapy violates the Dutch Code of Ethics for psychologists.
Article | Thread
Sweden Interview with the Dutch researcher Hans Knoop, a well known proponent of the discredited psychosomatic view of ME/CFS, who in a recent talk at the Karolinska Institute presented a study on CBT as treatment for Long Covid by addressing sleep habits, increased activity and learning to deal with negative thoughts about tiredness, pain and worry. Psychologist and researcher Elin Lindsäter wants to do a similar study in Sweden with 500 participants.
Article l Thread
...........
Coming events
DecodeME Webinar This webinar will be a chance to hear updates about the study's progress and have your questions answered. Thursday 12th October, 1:00pm (BST) on Zoom and Facebook Live.
Spread the word | Take part | Thread
PolyBio Fall 2023 Symposium
Friday, October 20, 12:30 - 5:00 PM Eastern
The symposium schedule and list of speakers has been updated.
Details | Register | Thread
Webinar: Long Covid Misconceptions with Dr Charles Shepherd and People with Lived Experience. 11th November, 1pm UK time.
UK ME Association article about a webinar hosted by Bournemouth University open to the public. Part of the ESRC Festival of Social Science, an annual, UK-wide, free celebration of the social sciences.
Article with link for registration | Thread
...........
For Research news and research go to the next post.
Week beginning 2nd October 2023
Part 2 of 2
Research news and commentary
Austria
The first Austrian ME/CFS Biobank has been under construction at the Medical University of Vienna since September 1, 2023, with support from an initial grant provided by the WE&ME Foundation. The project is led by Prof. Untersmayr-Elsenhuber.
Article | Thread
UK DecodeME needs more UK participants with an ME/CFS diagnosis, including those diagnosed following Covid infection, and reminds people who have been sent a spit kit to return them. The final date for submitting the questionnaire part of the study is 15th November at 5pm, and the final date for spit kits to be sent is 31st January 2024.
Spread the word | Take part | Thread
UK Action for ME The first Clare Francis Research fellowship has been awarded to Audrey Ryback who will be researching the impact of ME/CFS on mitochondrial function, supervised by Prof Chris Ponting.
Article | Thread
Patient and Public Involvement opportunity Audrey Ryback is looking for
3 PPI members to help co-produce and feedback on the research. This will involve 4 Zoom meetings over 2 years and reading documents, and will be paid.
Thread with details
ME Research UK describes a current research project: "Exploring patterns of antibodies in moderate and severe ME/CFS" by Dr Eliana Lacerda and Prof Jo Cambridge. It is a pilot project using samples from the UK ME/CFS biobank and is funded by MERUK.
Article | Thread
Advanced Science News First ever diagnostic test for chronic fatigue syndrome sparks hope
A good article on a recent study led by Karl Morten and Wei Huang on a test which could identify hallmarks of CFS in blood cells with 91% accuracy. It describes the method used; single cell Raman spectroscopy. Professor Jonas Bergquist is also interviewed and says there has been a positive shift in recent years when it comes to research into ME.
Article l Thread
...........
Research
ME/CFS research
BioRxiv preprint
HERV activation segregates ME/CFS from fibromyalgia and defines a novel nosological entity for patients fulfilling both clinical criteria - Gimenez-Orenga et al.
"The results show specific HERV fingerprints for each disease, confirming biological differences between ME/CFS and FM. Unexpectedly, HERV (human endogenous retroviruses) profiles segregated patients that met both ME/CFS and FM clinical criteria from patients complying only with ME or FM criteria, while clearly differentiating patients from healthy subjects,.. "
Preprint | Thread
Clinical Therapeutics
Unsupervised cluster analysis reveals distinct subtypes of ME/CFS patients based on peak oxygen consumption and SF-36 scores - Lacasa et al.
The authors used machine learning to divide a sample of ME/CFS patients into two groups according the their SF-36 scores. This classification method was used on a second group and found to be associated with CPET oxygen consumption results.
Article | Thread
Mayo Clinic Proceedings
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Grach et al.
This review article provides an overview on diagnosis, evaluation, and management strategies for ME/CFS. Physicians can earn CME credits by reading the article and completing an online test and evaluation afterwards.
Article | Thread
Journal of Medical Science (JMS)
Chronic fatigue syndrome - challenge in diagnosis and management: a literature review - Nieciecka et al.
This review by Polish researchers concludes: "Diagnosis and treatment of chronic fatigue syndrome undoubtedly is a medical challenge, due to non-specific symptoms, multifactorial pathogenesis and difficult to estimate prevalence of this disease."
Article | Thread
BMJ Open
Identifying, synthesising and appraising existing evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review - Slack et al.
This review concludes that "current evidence on ME/CFS in pregnancy is limited and findings inconclusive."
Article | Thread
Long Covid research
The American Journal of Emergency Medicine
Pathophysiology and potential treatment of long COVID: A report of signal index cases and call for targeted research — Scheppke et al.
Case reports describing the first three complete recovery events observed in patients with established long Covid (pre-Delta variant) who were prophylactically treated on repeat infection, with intention to prevent further symptom worsening. Treatment was an anti-spike monoclonal antibody combination (casirivimab/imdevimab). All LC symptoms were observed to fully reverse and resolve within 4-7 days, with the patients remaining symptomatically fully recovered beyond a year.
Article | Thread
Journal of Thrombosis and Haemostasis
COVID-19 promotes endothelial dysfunction and thrombogenicity: Role of pro-inflammatory cytokines/SGLT2 pro-oxidant pathway — Ali Mroueh et al.
“The major findings of this study indicate that in COVID-19 patients, inflammation causes a redox-sensitive up-regulation of SGLT2 expression in coronary ECs. In turn, this process fuels endothelial dysfunction, senescence, inflammation, platelet adhesion and aggregation and thrombin generation.”
Article | Thread
JAMA Network Open
Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19 — Sung Ha Lim et al.
“Our results emphasize the need to focus on managing not only the acute stages of COVID-19 itself but also autoimmune diseases as complications of COVID-19.”
Article | Thread
Nature Scientific Reports
Virtual reality for assessing stereopsis performance and eye characteristics in Post-COVID — Mehringer et al.
“The recorded data support the classification result showing worse stereopsis performance and eye movement alterations in Post-COVID.”
Article | Thread
.............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research news and commentary
Austria
The first Austrian ME/CFS Biobank has been under construction at the Medical University of Vienna since September 1, 2023, with support from an initial grant provided by the WE&ME Foundation. The project is led by Prof. Untersmayr-Elsenhuber.
Article | Thread
UK DecodeME needs more UK participants with an ME/CFS diagnosis, including those diagnosed following Covid infection, and reminds people who have been sent a spit kit to return them. The final date for submitting the questionnaire part of the study is 15th November at 5pm, and the final date for spit kits to be sent is 31st January 2024.
Spread the word | Take part | Thread
UK Action for ME The first Clare Francis Research fellowship has been awarded to Audrey Ryback who will be researching the impact of ME/CFS on mitochondrial function, supervised by Prof Chris Ponting.
Article | Thread
Patient and Public Involvement opportunity Audrey Ryback is looking for
3 PPI members to help co-produce and feedback on the research. This will involve 4 Zoom meetings over 2 years and reading documents, and will be paid.
Thread with details
ME Research UK describes a current research project: "Exploring patterns of antibodies in moderate and severe ME/CFS" by Dr Eliana Lacerda and Prof Jo Cambridge. It is a pilot project using samples from the UK ME/CFS biobank and is funded by MERUK.
Article | Thread
Advanced Science News First ever diagnostic test for chronic fatigue syndrome sparks hope
A good article on a recent study led by Karl Morten and Wei Huang on a test which could identify hallmarks of CFS in blood cells with 91% accuracy. It describes the method used; single cell Raman spectroscopy. Professor Jonas Bergquist is also interviewed and says there has been a positive shift in recent years when it comes to research into ME.
Article l Thread
...........
Research
ME/CFS research
BioRxiv preprint
HERV activation segregates ME/CFS from fibromyalgia and defines a novel nosological entity for patients fulfilling both clinical criteria - Gimenez-Orenga et al.
"The results show specific HERV fingerprints for each disease, confirming biological differences between ME/CFS and FM. Unexpectedly, HERV (human endogenous retroviruses) profiles segregated patients that met both ME/CFS and FM clinical criteria from patients complying only with ME or FM criteria, while clearly differentiating patients from healthy subjects,.. "
Preprint | Thread
Clinical Therapeutics
Unsupervised cluster analysis reveals distinct subtypes of ME/CFS patients based on peak oxygen consumption and SF-36 scores - Lacasa et al.
The authors used machine learning to divide a sample of ME/CFS patients into two groups according the their SF-36 scores. This classification method was used on a second group and found to be associated with CPET oxygen consumption results.
Article | Thread
Mayo Clinic Proceedings
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Grach et al.
This review article provides an overview on diagnosis, evaluation, and management strategies for ME/CFS. Physicians can earn CME credits by reading the article and completing an online test and evaluation afterwards.
Article | Thread
Journal of Medical Science (JMS)
Chronic fatigue syndrome - challenge in diagnosis and management: a literature review - Nieciecka et al.
This review by Polish researchers concludes: "Diagnosis and treatment of chronic fatigue syndrome undoubtedly is a medical challenge, due to non-specific symptoms, multifactorial pathogenesis and difficult to estimate prevalence of this disease."
Article | Thread
BMJ Open
Identifying, synthesising and appraising existing evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review - Slack et al.
This review concludes that "current evidence on ME/CFS in pregnancy is limited and findings inconclusive."
Article | Thread
Long Covid research
The American Journal of Emergency Medicine
Pathophysiology and potential treatment of long COVID: A report of signal index cases and call for targeted research — Scheppke et al.
Case reports describing the first three complete recovery events observed in patients with established long Covid (pre-Delta variant) who were prophylactically treated on repeat infection, with intention to prevent further symptom worsening. Treatment was an anti-spike monoclonal antibody combination (casirivimab/imdevimab). All LC symptoms were observed to fully reverse and resolve within 4-7 days, with the patients remaining symptomatically fully recovered beyond a year.
Article | Thread
Journal of Thrombosis and Haemostasis
COVID-19 promotes endothelial dysfunction and thrombogenicity: Role of pro-inflammatory cytokines/SGLT2 pro-oxidant pathway — Ali Mroueh et al.
“The major findings of this study indicate that in COVID-19 patients, inflammation causes a redox-sensitive up-regulation of SGLT2 expression in coronary ECs. In turn, this process fuels endothelial dysfunction, senescence, inflammation, platelet adhesion and aggregation and thrombin generation.”
Article | Thread
JAMA Network Open
Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19 — Sung Ha Lim et al.
“Our results emphasize the need to focus on managing not only the acute stages of COVID-19 itself but also autoimmune diseases as complications of COVID-19.”
Article | Thread
Nature Scientific Reports
Virtual reality for assessing stereopsis performance and eye characteristics in Post-COVID — Mehringer et al.
“The recorded data support the classification result showing worse stereopsis performance and eye movement alterations in Post-COVID.”
Article | Thread
.............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator:
Week beginning 9th October 2023
Part 1 of 2
News and advocacy
Australia This month the ME/CFS Registry (You+ME, Aust.) and Biobank will be expanded and renamed the Australian ME/CFS and Long COVID (AusME) Registry and Biobank. Participants to include people aged 12+ with ME/CFS, Long COVID and healthy volunteers. Emerge Australia are the custodians and it is funded by the Mason Foundation.
Article | Thread
UK DecodeME Only a few weeks left - the final date for submitting the questionnaire part of the study is 15th November at 5pm. Please help to spread the word, many more participants are needed.
Spread the word | Take part | Thread
Aotearoa New Zealand RNZCGP
A letter has been sent by a S4ME member to the medical director of the Royal NZ College of General Practitioners, asking for removal of the recommendations of, and support for, the Lightning Process in ME/CFS GP training.
Letter | Thread | MedCase
Cochrane reviews of exercise therapy for ME/CFS. On 8th October the Science for ME committee sent another letter, this time addressed to Cochrane's Chief Executive, with a set of six questions, including: "Who has the authority and responsibility to remove a Cochrane review that has been shown to be inaccurate and harmful?" There has been no reply so far. The S4ME petition remains open.
Letter | Petition | Petition thread
UK Government Work Capability Assessment: Open Consultation
Proposed changes are likely to be harmful for people with ME/CFS. We encourage participation in the consultation to point out the problems the changes will cause.
Closing date for responses 30th October.
Government website with documents and ways to respond | Thread
............
Articles and interviews
Mayo Clinic A short video (about 6 minutes) where speakers Dr. Stephanie Grach (Assistant Professor of Medicine in the Division of General Internal Medicine at Mayo Clinic) and Jaime Seltzer (Director of Scientific and Medical Outreach at #MEAction and researcher with Stanford School of Medicine) discuss their Concise Review on the diagnosis and management of ME/CFS, published in the October 2023 issue of the Mayo Clinic Proceedings.
Video | Thread
Emerge Australia podcast "This conversation, hosted by Anne Wilson, is with the extraordinary Lynne Harris, who has been caring for her oldest son, who has just turned 34, for over 3 years. Prior, Lynn was a full-time junior primary teacher. She had to change her life as a mother of two in order to provide the 24/7 nursing home care that her son’s medical team ordered." Duration 48 minutes.
Podcast | Thread
Emerge Australia Podcast "CEO Anne Wilson in conversation with Emeritus Professor Paul Fisher... Of particular emphasis for us is Prof. Fisher’s dedication and focus in studying blood plasma, white blood cells and mitochrondria from ME/CFS patients. Paul is Chair of Emerge Australia’s Medical and Scientific Advisory Committee, where his leadership helps shape our research priorities." Duration 30 minutes.
Podcast | Thread
Trial by Error by David Tuller
More of the Same Old Nonsense from the "Oslo Chronic Fatigue Consortium"
A brilliant rebuttal of the recent opinion piece by the Oslo Chronic Fatigue Consortium, described as "yet another wail of desperation from psychologising dead-enders who have lost control of the narrative over the nature and treatment of ME/CFS and long Covid".
Article l Thread
Authors of Dutch Long Covid Paper Contradict Each Other
More critical points concerning a recent Dutch study, ReCOVer, on CBT as treatment for fatigue post COVID-19. The lead author has stated that behaviour and views are preventing some people from recovering, but this is not supported by another author of the study, Professor Rovers, who says in a discussion with Tuller on X/Twitter that this was not looked at at all in the study.
Article l Thread
Springer
Pragmatism in the fray: Constructing futures for ‘medically unexplained symptoms’ - Greco
This is a book chapter forthcoming in Schermer, M. and Binney, N. (eds) (2024) A New Pragmatic Approach to the Conceptualisation of Health and Disease. The author explores two types of pragmatism in relation to medically unexplained symptoms: Rorty’s ‘epistemological behaviourism’ and William James’ ‘radical empiricism’.
Article | Thread
UK Guardian Immunologist Professor Sheena Cruickshank writes of the lack of sufficient monitoring of Covid in the UK, and the continuing evolution of new variants. "More resilient variants are emerging. Yet monitoring and testing have slowed, and access to vital drugs is patchy".
Article | Thread
............
Resources
USA "The Nuts and Bolts of Applying for Disability Benefits in the US with ME/CFS or Long COVID"
Recording of a 2.5 hour webinar from Open Medicine Foundation (OMF). Speakers include OMF Founder & CEO, Linda Tannenbaum, Social Security Attorney Barbara Comerford, and Neuropsychologist Gudrun Lange, PhD.
Webinar | Summary | Thread
............
Coming events
USA NIH ME/CFS Research Roadmap webinar series The next webinar is on October 19 10am to 2pm ET. The topic is The Immune System, and speakers include Jarred Younger, Peter Rowe and Jonas Bergquist.
Register | Thread
Bateman Horne Center - Lunch and Learn
Topic: How to Talk to Your Primary Care Provider
Thursday, October 19, 11:30 AM - 1:30 PM Mountain Time
Announcement | Thread
#MEAction - Caregiver Support Call
Saturday, October 21
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 - Creative writing workshops for people with ME/CFS or Long Covid
#MEAction will partner with Writers Guild Initiative (WGI).
There will be three sessions during the weekends in November.
Deadline to apply is Monday, October 23, 2023.
Announcement | Thread
............
Go to the next post for Part 2: Research
Part 1 of 2
News and advocacy
Australia This month the ME/CFS Registry (You+ME, Aust.) and Biobank will be expanded and renamed the Australian ME/CFS and Long COVID (AusME) Registry and Biobank. Participants to include people aged 12+ with ME/CFS, Long COVID and healthy volunteers. Emerge Australia are the custodians and it is funded by the Mason Foundation.
Article | Thread
UK DecodeME Only a few weeks left - the final date for submitting the questionnaire part of the study is 15th November at 5pm. Please help to spread the word, many more participants are needed.
Spread the word | Take part | Thread
Aotearoa New Zealand RNZCGP
A letter has been sent by a S4ME member to the medical director of the Royal NZ College of General Practitioners, asking for removal of the recommendations of, and support for, the Lightning Process in ME/CFS GP training.
Letter | Thread | MedCase
Cochrane reviews of exercise therapy for ME/CFS. On 8th October the Science for ME committee sent another letter, this time addressed to Cochrane's Chief Executive, with a set of six questions, including: "Who has the authority and responsibility to remove a Cochrane review that has been shown to be inaccurate and harmful?" There has been no reply so far. The S4ME petition remains open.
Letter | Petition | Petition thread
UK Government Work Capability Assessment: Open Consultation
Proposed changes are likely to be harmful for people with ME/CFS. We encourage participation in the consultation to point out the problems the changes will cause.
Closing date for responses 30th October.
Government website with documents and ways to respond | Thread
............
Articles and interviews
Mayo Clinic A short video (about 6 minutes) where speakers Dr. Stephanie Grach (Assistant Professor of Medicine in the Division of General Internal Medicine at Mayo Clinic) and Jaime Seltzer (Director of Scientific and Medical Outreach at #MEAction and researcher with Stanford School of Medicine) discuss their Concise Review on the diagnosis and management of ME/CFS, published in the October 2023 issue of the Mayo Clinic Proceedings.
Video | Thread
Emerge Australia podcast "This conversation, hosted by Anne Wilson, is with the extraordinary Lynne Harris, who has been caring for her oldest son, who has just turned 34, for over 3 years. Prior, Lynn was a full-time junior primary teacher. She had to change her life as a mother of two in order to provide the 24/7 nursing home care that her son’s medical team ordered." Duration 48 minutes.
Podcast | Thread
Emerge Australia Podcast "CEO Anne Wilson in conversation with Emeritus Professor Paul Fisher... Of particular emphasis for us is Prof. Fisher’s dedication and focus in studying blood plasma, white blood cells and mitochrondria from ME/CFS patients. Paul is Chair of Emerge Australia’s Medical and Scientific Advisory Committee, where his leadership helps shape our research priorities." Duration 30 minutes.
Podcast | Thread
Trial by Error by David Tuller
More of the Same Old Nonsense from the "Oslo Chronic Fatigue Consortium"
A brilliant rebuttal of the recent opinion piece by the Oslo Chronic Fatigue Consortium, described as "yet another wail of desperation from psychologising dead-enders who have lost control of the narrative over the nature and treatment of ME/CFS and long Covid".
Article l Thread
Authors of Dutch Long Covid Paper Contradict Each Other
More critical points concerning a recent Dutch study, ReCOVer, on CBT as treatment for fatigue post COVID-19. The lead author has stated that behaviour and views are preventing some people from recovering, but this is not supported by another author of the study, Professor Rovers, who says in a discussion with Tuller on X/Twitter that this was not looked at at all in the study.
Article l Thread
Springer
Pragmatism in the fray: Constructing futures for ‘medically unexplained symptoms’ - Greco
This is a book chapter forthcoming in Schermer, M. and Binney, N. (eds) (2024) A New Pragmatic Approach to the Conceptualisation of Health and Disease. The author explores two types of pragmatism in relation to medically unexplained symptoms: Rorty’s ‘epistemological behaviourism’ and William James’ ‘radical empiricism’.
Article | Thread
UK Guardian Immunologist Professor Sheena Cruickshank writes of the lack of sufficient monitoring of Covid in the UK, and the continuing evolution of new variants. "More resilient variants are emerging. Yet monitoring and testing have slowed, and access to vital drugs is patchy".
Article | Thread
............
Resources
USA "The Nuts and Bolts of Applying for Disability Benefits in the US with ME/CFS or Long COVID"
Recording of a 2.5 hour webinar from Open Medicine Foundation (OMF). Speakers include OMF Founder & CEO, Linda Tannenbaum, Social Security Attorney Barbara Comerford, and Neuropsychologist Gudrun Lange, PhD.
Webinar | Summary | Thread
............
Coming events
USA NIH ME/CFS Research Roadmap webinar series The next webinar is on October 19 10am to 2pm ET. The topic is The Immune System, and speakers include Jarred Younger, Peter Rowe and Jonas Bergquist.
Register | Thread
Bateman Horne Center - Lunch and Learn
Topic: How to Talk to Your Primary Care Provider
Thursday, October 19, 11:30 AM - 1:30 PM Mountain Time
Announcement | Thread
#MEAction - Caregiver Support Call
Saturday, October 21
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 - Creative writing workshops for people with ME/CFS or Long Covid
#MEAction will partner with Writers Guild Initiative (WGI).
There will be three sessions during the weekends in November.
Deadline to apply is Monday, October 23, 2023.
Announcement | Thread
............
Go to the next post for Part 2: Research
Week beginning 9th October 2023
Part 2 of 2
Research
ME/CFS research
The American Journal of Medicine
People With Long COVID and [ME/CFS] Exhibit Similarly Impaired Vascular Function - McLaughlin et al.
Flow-mediated dilation measurements were from 17 each of ME/CFS, Long Covid and healthy controls. The authors suggest the results indicate impaired endothelial function in both disease groups which may lead to increased cardiovascular risk.
Article | Thread
Research Square Preprint
Dysautonomia and small fiber neuropathy in post-COVID condition and Chronic Fatigue Syndrome - Azcue et al.
87 patients with post-COVID condition, 50 patients with ME/CFS, and 50 HC.
Tests found significant numbers in both disease groups with POTS, possible damage to unmyelinated fibers, and indication of non-length-dependent SFN.
Preprint | Thread
Clinical Psychology in Europe
Aetiological Understanding of Fibromyalgia, Irritable Bowel Syndrome, Chronic Fatigue Syndrome and Classificatory Analogues: A Systematic Umbrella Review - Kleinstäuber et al.
This authors conducted a review of reviews on the aetiology of fibromyalgia, irritable bowel syndrome (IBS) and ME/CFS. Deficient conditioned pain modulation, genetic factors, changes in the immune, endocrinological, gastrointestinal, cardiovascular, and nervous system, and psychosocial factors were found to increase the risk of these conditions.
Article | Thread
Preprints.org
A Systematic Analysis of the Effectiveness of Mitochondrial-Based Therapies for the Management of [ME/CFS] - Leif Gerrit Keferstein
The authors review 22 papers on mitochondrial-based therapies for ME/CFS. Potential chemical markers for ME/CFS included impaired T cell metabolism, reduced flow-mediated dilation, and decreased work rate at the ventilatory threshold.
Article | Thread
Research Square Preprint
Sex and disease severity-based analysis of steroid hormones in ME/CFS - Westermeier et al
Levels of nine circulating steroid hormones (SH) were tested in small groups of males and females with ME/CFS divided into two severity levels, and healthy controls. The authors suggest that differences found between groups "provide new perspectives to explore the clinical relevance of these SH-related differences within specific patient subgroups."
Preprint | Thread
University of Hasselt
An experimental study investigating the link between symptom reporting and heart rate variability in CFS patients - Dest & Grosemans
In this Belgian master thesis guided by Kathleen Bogaerts the authors explored the relationship between heart rate variability and symptoms in 5 CFS patients and 7 healthy controls.
Article | Thread
Long Covid research
International Journal of Molecular Sciences
Integrative Plasma Metabolic and Lipidomic Modelling of SARS-CoV-2 Infection in Relation to Clinical Severity and Early Mortality Prediction — Lodge et al.
“Marked alterations on pyruvate, formate, and the lactate to pyruvate ratio indicate perturbation of the tricarboxylic acid cycle and energy metabolism at all levels of infection […] mortality was associated with infection severity and could be predicted based on the hexosylceramide and sphingomyelin profiles 8–61 days prior to death.”
Article | Thread
Journal of the American Heart Association
Association of SARS‐CoV‐2 Infection and Cardiopulmonary Long COVID With Exercise Capacity and Chronotropic Incompetence Among People With HIV — Matthew S. Durstenfeld et al.
“Chronotropic incompetence was more common among those with HIV and SARS-CoV-2 coinfection experiencing cardiopulmonary symptoms compared with HIV-uninfected individuals with cardiopulmonary symptoms and PWH without symptoms.”
Article | Thread
British Journal of Haematology
Prolonged platelet hyperactivity after COVID-19 infection — Noriko Nara et al.
“In this study, by serially measuring platelet activity using an automated haematology analyser, we demonstrated that platelet hyperactivity persisted for at least 40 days in most patients with COVID-19, even after the resolution of acute inflammation.”
Article | Thread
Diagnostics
Brain Volume Changes after COVID-19 Compared to Healthy Controls by Artificial Intelligence-Based MRI Volumetry — Bendella et al.
“There were statistically significant differences in measured brain volumes and percentiles of various brain regions among groups, even after the exclusion of patients undergoing intensive care, with significant volume reductions in COVID-19 patients, which increased with disease severity”
Article | Thread
Frontiers in Immunology
Immunological profiling in long COVID: overall low grade inflammation and T-lymphocyte senescence and increased monocyte activation correlating with increasing fatigue severity — Berentschot et al.
“Increased fatigue severity associated with stronger signs of monocyte activation in long COVID patients and potentially point in the direction of monocyte-endothelial interaction. These abnormalities were present against a background of immune abnormalities common to the entire group of long COVID patients.”
Article | Thread
Frontiers in Immunology
SARS-CoV-2 spike antigen-specific B cell and antibody responses in pre-vaccination period COVID-19 convalescent males and females with or without post-covid condition — Limoges et al.
“The antibody responses to the spike protein, but not the anti-RBD B cell responses diverge between convalescent males and females who develop PCC. Our findings also suggest that sex-related factors may also be involved in the development of PCC via modulating antibody responses to the SARS-CoV-2 antigens.”
Article | Thread
International Immunopharmacology
Low-dose naltrexone use for the management of post-acute sequelae of COVID-19 — Bonilla et al.
“We performed a retrospective review of a clinical cohort of 59 patients […] The use of LDN was associated with a fewer number of symptoms, improved clinical symptoms (fatigue, post-exertional malaise, unrefreshing sleep, and abnormal sleep pattern), and a better functional status. This observation warrants testing in rigorous, randomized, placebo-controlled clinical trials.”
Article | Thread
Journal of Translational Medicine
Genomic communication via circulating extracellular vesicles and long-term health consequences of COVID-19 — Nair et al.
Review paper. “EVs could potentially establish a crucial link between COVID-19 and its enduring aftermath.”
Article | Thread
Journal of Psychiatric Research
From ‘mental fog’ to post-acute COVID-19 syndrome's executive function alteration: Implications for clinical approach — Pallanti et al.
“Here, we argue in favour of a shift from the non-descriptive definition of ‘mental fog’ to a characterization of a subtype of PACS, associated with alteration in executive functioning.”
Article | Thread
Urology Case Reports
Fibrin microthrombi in bladder urothelium after SARS-CoV-2 infection: Case report — Hoang Roberts et al.
“The findings of this study suggest that increased levels of IL-8 in the bladder may drive microthrombi in the bladder vasculature and that urinary IL-8 levels might provide a means of detecting if a patient is at risk for developing symptoms from these microthrombi after SARS-CoV-2 infection.”
Article | Thread
.............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research
ME/CFS research
The American Journal of Medicine
People With Long COVID and [ME/CFS] Exhibit Similarly Impaired Vascular Function - McLaughlin et al.
Flow-mediated dilation measurements were from 17 each of ME/CFS, Long Covid and healthy controls. The authors suggest the results indicate impaired endothelial function in both disease groups which may lead to increased cardiovascular risk.
Article | Thread
Research Square Preprint
Dysautonomia and small fiber neuropathy in post-COVID condition and Chronic Fatigue Syndrome - Azcue et al.
87 patients with post-COVID condition, 50 patients with ME/CFS, and 50 HC.
Tests found significant numbers in both disease groups with POTS, possible damage to unmyelinated fibers, and indication of non-length-dependent SFN.
Preprint | Thread
Clinical Psychology in Europe
Aetiological Understanding of Fibromyalgia, Irritable Bowel Syndrome, Chronic Fatigue Syndrome and Classificatory Analogues: A Systematic Umbrella Review - Kleinstäuber et al.
This authors conducted a review of reviews on the aetiology of fibromyalgia, irritable bowel syndrome (IBS) and ME/CFS. Deficient conditioned pain modulation, genetic factors, changes in the immune, endocrinological, gastrointestinal, cardiovascular, and nervous system, and psychosocial factors were found to increase the risk of these conditions.
Article | Thread
Preprints.org
A Systematic Analysis of the Effectiveness of Mitochondrial-Based Therapies for the Management of [ME/CFS] - Leif Gerrit Keferstein
The authors review 22 papers on mitochondrial-based therapies for ME/CFS. Potential chemical markers for ME/CFS included impaired T cell metabolism, reduced flow-mediated dilation, and decreased work rate at the ventilatory threshold.
Article | Thread
Research Square Preprint
Sex and disease severity-based analysis of steroid hormones in ME/CFS - Westermeier et al
Levels of nine circulating steroid hormones (SH) were tested in small groups of males and females with ME/CFS divided into two severity levels, and healthy controls. The authors suggest that differences found between groups "provide new perspectives to explore the clinical relevance of these SH-related differences within specific patient subgroups."
Preprint | Thread
University of Hasselt
An experimental study investigating the link between symptom reporting and heart rate variability in CFS patients - Dest & Grosemans
In this Belgian master thesis guided by Kathleen Bogaerts the authors explored the relationship between heart rate variability and symptoms in 5 CFS patients and 7 healthy controls.
Article | Thread
Long Covid research
International Journal of Molecular Sciences
Integrative Plasma Metabolic and Lipidomic Modelling of SARS-CoV-2 Infection in Relation to Clinical Severity and Early Mortality Prediction — Lodge et al.
“Marked alterations on pyruvate, formate, and the lactate to pyruvate ratio indicate perturbation of the tricarboxylic acid cycle and energy metabolism at all levels of infection […] mortality was associated with infection severity and could be predicted based on the hexosylceramide and sphingomyelin profiles 8–61 days prior to death.”
Article | Thread
Journal of the American Heart Association
Association of SARS‐CoV‐2 Infection and Cardiopulmonary Long COVID With Exercise Capacity and Chronotropic Incompetence Among People With HIV — Matthew S. Durstenfeld et al.
“Chronotropic incompetence was more common among those with HIV and SARS-CoV-2 coinfection experiencing cardiopulmonary symptoms compared with HIV-uninfected individuals with cardiopulmonary symptoms and PWH without symptoms.”
Article | Thread
British Journal of Haematology
Prolonged platelet hyperactivity after COVID-19 infection — Noriko Nara et al.
“In this study, by serially measuring platelet activity using an automated haematology analyser, we demonstrated that platelet hyperactivity persisted for at least 40 days in most patients with COVID-19, even after the resolution of acute inflammation.”
Article | Thread
Diagnostics
Brain Volume Changes after COVID-19 Compared to Healthy Controls by Artificial Intelligence-Based MRI Volumetry — Bendella et al.
“There were statistically significant differences in measured brain volumes and percentiles of various brain regions among groups, even after the exclusion of patients undergoing intensive care, with significant volume reductions in COVID-19 patients, which increased with disease severity”
Article | Thread
Frontiers in Immunology
Immunological profiling in long COVID: overall low grade inflammation and T-lymphocyte senescence and increased monocyte activation correlating with increasing fatigue severity — Berentschot et al.
“Increased fatigue severity associated with stronger signs of monocyte activation in long COVID patients and potentially point in the direction of monocyte-endothelial interaction. These abnormalities were present against a background of immune abnormalities common to the entire group of long COVID patients.”
Article | Thread
Frontiers in Immunology
SARS-CoV-2 spike antigen-specific B cell and antibody responses in pre-vaccination period COVID-19 convalescent males and females with or without post-covid condition — Limoges et al.
“The antibody responses to the spike protein, but not the anti-RBD B cell responses diverge between convalescent males and females who develop PCC. Our findings also suggest that sex-related factors may also be involved in the development of PCC via modulating antibody responses to the SARS-CoV-2 antigens.”
Article | Thread
International Immunopharmacology
Low-dose naltrexone use for the management of post-acute sequelae of COVID-19 — Bonilla et al.
“We performed a retrospective review of a clinical cohort of 59 patients […] The use of LDN was associated with a fewer number of symptoms, improved clinical symptoms (fatigue, post-exertional malaise, unrefreshing sleep, and abnormal sleep pattern), and a better functional status. This observation warrants testing in rigorous, randomized, placebo-controlled clinical trials.”
Article | Thread
Journal of Translational Medicine
Genomic communication via circulating extracellular vesicles and long-term health consequences of COVID-19 — Nair et al.
Review paper. “EVs could potentially establish a crucial link between COVID-19 and its enduring aftermath.”
Article | Thread
Journal of Psychiatric Research
From ‘mental fog’ to post-acute COVID-19 syndrome's executive function alteration: Implications for clinical approach — Pallanti et al.
“Here, we argue in favour of a shift from the non-descriptive definition of ‘mental fog’ to a characterization of a subtype of PACS, associated with alteration in executive functioning.”
Article | Thread
Urology Case Reports
Fibrin microthrombi in bladder urothelium after SARS-CoV-2 infection: Case report — Hoang Roberts et al.
“The findings of this study suggest that increased levels of IL-8 in the bladder may drive microthrombi in the bladder vasculature and that urinary IL-8 levels might provide a means of detecting if a patient is at risk for developing symptoms from these microthrombi after SARS-CoV-2 infection.”
Article | Thread
.............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 16th October 2023
News, advocacy and articles
UK DecodeME Webinar recorded on 12th October is now available as video, audio and transcript. Professor Chris Ponting, Sonya Chowdhury and Sian Leary discuss the questionnaire findings and timeline for completion of the study.
Anyone in the UK over 16 with an ME/CFS diagnosis can partipate in this important study, including those diagnosed following Covid infection.
Deadlines for participation:
30th October return paper version of questionnaire;
5pm on 15th November submit completed online questionnaire;
31 January 2024 return spit kit.
Webinar | Take part | Thread
Cochrane reviews of exercise therapy for ME/CFS. The Science for ME committee has received a reply from the office of the Editor-in-Chief of Cochrane to our most recent letter. They refuse to withdraw the outdated and harmful 2019 review, and refer all other questions about the stalled new review to the IAG (independent advisory group) who have not reported or answered emails for over two years. Our petition now has over 8900 signatures, 520 comments and 7 updates. Our requests to Cochrane are supported by over 50 organisations from around the world.
Letter to Cochrane | Reply from Cochrane | Petition | Petition thread
Solve M.E. Kristin Jacobson, formerly a member of the board of directors, has been announced as the new president and CEO of Solve M.E.
Announcement | Thread
Solve M.E. The Fall 2023 edition of their quarterly publication, The Chronicle, is now available.
Chronicle (PDF) | Thread
ME Research UK have awarded funding to Prof. Simon Carding at the Quadram Institute for a new project investigating the role of gut viruses in ME/CFS.
Article | Thread
The Netherlands
It was reported that during a symposium on (long) Covid at the Amsterdam Medical Center, a professor of CBT stood up to distance herself from CBT being curative. Reportedly, the whole room clapped in support.
Tweet | Thread
Trial by Error by David Tuller Depression/Anxiety Not Linked to Negative Outcomes in Patients with Functional Limb Weakness, FND Experts Report
A critique of a recent meta-analysis lacking reference for its claim about functional neurological disorders (FND) being "common". It also fails to document that depression/anxiety has an impact on prognosis. Tuller comments: "It is perhaps unfortunate that their null findings in this comprehensive review and meta-analysis have not, it seems, led the investigators to question any of their own long-standing assumptions".
Article l Thread
..............
Coming events
NIH - ME/CFS Research Roadmap webinars
Registration is now open for all upcoming webinars
- Metabolism: October 26, 2023
- Genomics/Genetic Susceptibilities: November 1, 2023
- Chronic Infections: November 30, 2023
- Physiology: December 8, 2023
- Less Studied Pathologies: January 5, 2024
- Circulation: January 11, 2024
Agendas are available for the first two webinars, agendas for other webinars will be posted soon.
Information | Registration | Thread
"New Developments in Understanding Chronic Illnesses:
The Role of Immune Dysfunction and Infections"
Virtual event, November 8-10, 2023
Schedule shown in US Eastern Time Zone. Speakers include Avindra Nath, Maureen R. Hanson, and Ronald W. Davis.
Announcement | Schedule | Thread
..............
Research
ME/CFS research
Biomedicine and Pharmacotherapy
A prospective randomized, double-blind placebo-controlled study to evaluate the effectiveness of neuroprotective therapy using functional brain MRI in patients with post-covid chronic fatigue syndrome - Tanashyan et al
In this Russian trial a 'a novel neuroprotective drug', CCSA (coordination complex with succinate acid anion) was tested against placebo. The treatment group showed changes on fMRI and some symptom improvement compared with controls.
Article | Thread
Der Schmerz
Interdisciplinary multimodal pain therapy in postviral syndromes and ME/CFS : Features, pitfalls and model concept - Luchting et al
"Summary of the current literature and presentation of clinical characteristics as well as presentation of a model project for a multimodal pain therapy in postviral syndromes with PEM." (Abstract in English, article in German)
Article | Thread
European Neuropsychopharmacology
Investigating causal links between chronic physical illness and major depressive disorder and anxiety disorders in youth - Shakeshaft et al.
"Having a chronic physical health condition is associated with mental ill-health in young people, however, initial MR analysis indicates the majority of these conditions are not causally associated with depression nor anxiety disorders. "
Article | Thread
Zeitschrift für Psychosomatische Medizin und Psychotherapie
Post-COVID and ME/CFS – Do We Need New Disease Theories? - Schauenburg
According to the author, "Physical findings only partially account for the dynamics and progression of chronic fatigue syndromes, necessitating more intricate disease models that incorporate aspects of bodily perception."
Article | Thread
Long Covid research
Cell
Serotonin reduction in post-acute sequelae of viral infection — Andrea C. Wong et al.
“We find that PASC are associated with serotonin reduction. Viral infection and type I interferon-driven inflammation reduce serotonin through three mechanisms: diminished intestinal absorption of the serotonin precursor tryptophan; platelet hyperactivation and thrombocytopenia, which impacts serotonin storage; and enhanced MAO-mediated serotonin turnover. Peripheral serotonin reduction, in turn, impedes the activity of the vagus nerve and thereby impairs hippocampal responses and memory.”
Article | Thread
Antimicrobial Stewardship & Healthcare Epidemiology
The effectiveness of COVID-19 vaccine in the prevention of post-COVID conditions: a systematic literature review and meta-analysis of the latest research — Alexandre R. Marra et al.
“The pooled [diagnostic odds ratio] for post-COVID conditions among fully vaccinated individuals was 0.680 (95% CI: 0.523–0.885) with an estimated VE of 32.0% (11.5%–47.7%).” ”The stratified analysis demonstrated no protection against post-COVID conditions among those who received COVID-19 vaccination after COVID-19 infection.”
Article | Thread
Emerging Infectious Diseases journal
Early Release - Neurologic Effects of SARS-CoV-2 Transmitted among Dogs - Volume 29, Number 11—November 2023 - Emerging Infectious Diseases journal - CDC — Dong-Hwi Kim et al.
“The dynamic brain changes in dogs highlight that even asymptomatic individuals infected with SARS-CoV-2 may develop neuropathologic changes in the brain.”
Article | Thread
Preprint: BioRxiv
Neuroinflammation in post-acute sequelae of COVID-19 (PASC) as assessed by [11C]PBR28 PET correlates with vascular disease measures — Michael B VanElzakker et al.
“We found significantly increased neuroinflammation in PASC versus controls across a wide swath of brain regions including midcingulate and anterior cingulate cortex, corpus callosum, thalamus, basal ganglia, and at the boundaries of ventricles. We also collected and analyzed peripheral blood plasma from the PASC individuals and found significant positive correlations between neuroinflammation and several circulating analytes related to vascular dysfunction.”
Article | Thread
Lancet Group Preprints
Healthcare Utilisation of 282,080 Individuals with Long COVID Over Two Years: A Multiple Matched Control Cohort Analysis — Mu et al.
“LC care was estimated to cost over £3000 (~USD 3750) per person per year, nearly four times more than care in the same individuals before the pandemic, and nearly three times as much as care in age- and comorbidity-matched individuals before and during the pandemic.”
Article | Thread
Preprint: MedRxiv
Internal tremors and vibrations in long COVID: a cross-sectional study — Tianna Zhou et al.
“In a cross-sectional study of people with long COVID, we found internal tremors were a common symptom, affecting 37% of participants.”
Article | Thread
Journal of Psychosomatic Research
Insomnia and sleep characteristics in post COVID-19 fatigue: A cross-sectional case-controlled study - Rouwerda et al.
The Dutch research team of Hans Knoop reports that 64% of their patients with post-COVID-19 fatigue, reported clinical insomnia.
Article | Thread
...............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and articles
UK DecodeME Webinar recorded on 12th October is now available as video, audio and transcript. Professor Chris Ponting, Sonya Chowdhury and Sian Leary discuss the questionnaire findings and timeline for completion of the study.
Anyone in the UK over 16 with an ME/CFS diagnosis can partipate in this important study, including those diagnosed following Covid infection.
Deadlines for participation:
30th October return paper version of questionnaire;
5pm on 15th November submit completed online questionnaire;
31 January 2024 return spit kit.
Webinar | Take part | Thread
Cochrane reviews of exercise therapy for ME/CFS. The Science for ME committee has received a reply from the office of the Editor-in-Chief of Cochrane to our most recent letter. They refuse to withdraw the outdated and harmful 2019 review, and refer all other questions about the stalled new review to the IAG (independent advisory group) who have not reported or answered emails for over two years. Our petition now has over 8900 signatures, 520 comments and 7 updates. Our requests to Cochrane are supported by over 50 organisations from around the world.
Letter to Cochrane | Reply from Cochrane | Petition | Petition thread
Solve M.E. Kristin Jacobson, formerly a member of the board of directors, has been announced as the new president and CEO of Solve M.E.
Announcement | Thread
Solve M.E. The Fall 2023 edition of their quarterly publication, The Chronicle, is now available.
Chronicle (PDF) | Thread
ME Research UK have awarded funding to Prof. Simon Carding at the Quadram Institute for a new project investigating the role of gut viruses in ME/CFS.
Article | Thread
The Netherlands
It was reported that during a symposium on (long) Covid at the Amsterdam Medical Center, a professor of CBT stood up to distance herself from CBT being curative. Reportedly, the whole room clapped in support.
Tweet | Thread
Trial by Error by David Tuller Depression/Anxiety Not Linked to Negative Outcomes in Patients with Functional Limb Weakness, FND Experts Report
A critique of a recent meta-analysis lacking reference for its claim about functional neurological disorders (FND) being "common". It also fails to document that depression/anxiety has an impact on prognosis. Tuller comments: "It is perhaps unfortunate that their null findings in this comprehensive review and meta-analysis have not, it seems, led the investigators to question any of their own long-standing assumptions".
Article l Thread
..............
Coming events
NIH - ME/CFS Research Roadmap webinars
Registration is now open for all upcoming webinars
- Metabolism: October 26, 2023
- Genomics/Genetic Susceptibilities: November 1, 2023
- Chronic Infections: November 30, 2023
- Physiology: December 8, 2023
- Less Studied Pathologies: January 5, 2024
- Circulation: January 11, 2024
Agendas are available for the first two webinars, agendas for other webinars will be posted soon.
Information | Registration | Thread
"New Developments in Understanding Chronic Illnesses:
The Role of Immune Dysfunction and Infections"
Virtual event, November 8-10, 2023
Schedule shown in US Eastern Time Zone. Speakers include Avindra Nath, Maureen R. Hanson, and Ronald W. Davis.
Announcement | Schedule | Thread
..............
Research
ME/CFS research
Biomedicine and Pharmacotherapy
A prospective randomized, double-blind placebo-controlled study to evaluate the effectiveness of neuroprotective therapy using functional brain MRI in patients with post-covid chronic fatigue syndrome - Tanashyan et al
In this Russian trial a 'a novel neuroprotective drug', CCSA (coordination complex with succinate acid anion) was tested against placebo. The treatment group showed changes on fMRI and some symptom improvement compared with controls.
Article | Thread
Der Schmerz
Interdisciplinary multimodal pain therapy in postviral syndromes and ME/CFS : Features, pitfalls and model concept - Luchting et al
"Summary of the current literature and presentation of clinical characteristics as well as presentation of a model project for a multimodal pain therapy in postviral syndromes with PEM." (Abstract in English, article in German)
Article | Thread
European Neuropsychopharmacology
Investigating causal links between chronic physical illness and major depressive disorder and anxiety disorders in youth - Shakeshaft et al.
"Having a chronic physical health condition is associated with mental ill-health in young people, however, initial MR analysis indicates the majority of these conditions are not causally associated with depression nor anxiety disorders. "
Article | Thread
Zeitschrift für Psychosomatische Medizin und Psychotherapie
Post-COVID and ME/CFS – Do We Need New Disease Theories? - Schauenburg
According to the author, "Physical findings only partially account for the dynamics and progression of chronic fatigue syndromes, necessitating more intricate disease models that incorporate aspects of bodily perception."
Article | Thread
Long Covid research
Cell
Serotonin reduction in post-acute sequelae of viral infection — Andrea C. Wong et al.
“We find that PASC are associated with serotonin reduction. Viral infection and type I interferon-driven inflammation reduce serotonin through three mechanisms: diminished intestinal absorption of the serotonin precursor tryptophan; platelet hyperactivation and thrombocytopenia, which impacts serotonin storage; and enhanced MAO-mediated serotonin turnover. Peripheral serotonin reduction, in turn, impedes the activity of the vagus nerve and thereby impairs hippocampal responses and memory.”
Article | Thread
Antimicrobial Stewardship & Healthcare Epidemiology
The effectiveness of COVID-19 vaccine in the prevention of post-COVID conditions: a systematic literature review and meta-analysis of the latest research — Alexandre R. Marra et al.
“The pooled [diagnostic odds ratio] for post-COVID conditions among fully vaccinated individuals was 0.680 (95% CI: 0.523–0.885) with an estimated VE of 32.0% (11.5%–47.7%).” ”The stratified analysis demonstrated no protection against post-COVID conditions among those who received COVID-19 vaccination after COVID-19 infection.”
Article | Thread
Emerging Infectious Diseases journal
Early Release - Neurologic Effects of SARS-CoV-2 Transmitted among Dogs - Volume 29, Number 11—November 2023 - Emerging Infectious Diseases journal - CDC — Dong-Hwi Kim et al.
“The dynamic brain changes in dogs highlight that even asymptomatic individuals infected with SARS-CoV-2 may develop neuropathologic changes in the brain.”
Article | Thread
Preprint: BioRxiv
Neuroinflammation in post-acute sequelae of COVID-19 (PASC) as assessed by [11C]PBR28 PET correlates with vascular disease measures — Michael B VanElzakker et al.
“We found significantly increased neuroinflammation in PASC versus controls across a wide swath of brain regions including midcingulate and anterior cingulate cortex, corpus callosum, thalamus, basal ganglia, and at the boundaries of ventricles. We also collected and analyzed peripheral blood plasma from the PASC individuals and found significant positive correlations between neuroinflammation and several circulating analytes related to vascular dysfunction.”
Article | Thread
Lancet Group Preprints
Healthcare Utilisation of 282,080 Individuals with Long COVID Over Two Years: A Multiple Matched Control Cohort Analysis — Mu et al.
“LC care was estimated to cost over £3000 (~USD 3750) per person per year, nearly four times more than care in the same individuals before the pandemic, and nearly three times as much as care in age- and comorbidity-matched individuals before and during the pandemic.”
Article | Thread
Preprint: MedRxiv
Internal tremors and vibrations in long COVID: a cross-sectional study — Tianna Zhou et al.
“In a cross-sectional study of people with long COVID, we found internal tremors were a common symptom, affecting 37% of participants.”
Article | Thread
Journal of Psychosomatic Research
Insomnia and sleep characteristics in post COVID-19 fatigue: A cross-sectional case-controlled study - Rouwerda et al.
The Dutch research team of Hans Knoop reports that 64% of their patients with post-COVID-19 fatigue, reported clinical insomnia.
Article | Thread
...............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator:
Week beginning 23rd October 2023
Part 1 of 2
News, advocacy and articles
UK BACME British Association of Clinicians in ME/CFS 2023 National Services Survey Report has been published and provides "a very comprehensive view of the current provision of specialist ME/CFS care in the UK". It also includes recommendations on education of clinicians and provision of more medical specialists and services for children and the severely affected.
Report | Thread
Sweden Sweden is terminating contracts between health regions and private specialist clinics with an offer to ME patients. This will result in these centres having to close down, as the Bragée center. There are plans of developing an offer from the public health care system, but details are lacking. ME sufferer Marita Ekberg told Sveriges radio that she is now without any care at all and Dr. Bragée who founded the Bragée center says that this is a blow to the patients.
Interview Ekberg l Interview Bragée l Thread
STAT Meghan O´Rourke on a medical system not built for chronic illness - and the 'invisible kingdom' that could spur change
Interview with Megan O´Rourke, journalist and author of the book "The invisible kingdom". She talks about society's resistance to chronic illness and the need for recognition and investment in these conditions.
Article l Thread
Salon "The doctors with long COVID who have been left behind"
Article talking about the pandemic's impact on health care workers. Many have Long Covid and are either unable to work or have had to significantly reduce their hours.
Article | Thread
Dialogues for a Neglected Illness The film 'The Tangled Story of ME/CFS: Controversy, Denigration and Ignorance' is now on youtube. The series of Dialogues films were made with a Wellcome Public Engagement Fund award by Natalie Boulton & Josh Biggs, and are on the Dialogues website.
Film | Dialogues website | Thread
Norway A project titled "Standardising collaborative care pathways for adolescents and adults with CFS/ME", led by specialist in psychology Tormod Landmark, will take place in Trøndelag. From the description: "This innovation project will develop a strategy for the collaboration between the patient and services through collaborative consultations over video".
More information l Thread
Denmark The Minister of Health Sophie Løhde says it's clear that ME patients feel they are not met in a good way in the health care system. She has now allocated funds for an independent review of the latest international research into ME in order to see if the patient group can be better helped.
Article from TVsyd l Thread
Petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review - Science for ME
The petition will remain open until Cochrane no longer hosts a review that recommends exercise therapy for ME/CFS. So far over 9000 people have signed, and 58 organisations from from all over the world have signed in support of the campaign.
Petition | Petition thread | Letters and replies
Trial by Error by David Tuller
A Crap Study on "Psychosomatic Therapy" for "Persistent Somatic Symptoms"
A critique of another Dutch psychosomatic trial described as "a real mess".
"There were no statistically significant differences in the primary outcome of patient functioning and in the secondary outcomes of severity of symptoms and the frequency of health care consumption, as measured in contacts with clinicians. Yet these disappointing findings did not discourage the investigators, who concluded anyway that “the psychosomatic therapy appears promising for further study.”"
Article l Thread
"What's Going On with Cochrane's Exercise Review Mess?"
About the current correspondence where the Science for ME Forum has urged Cochrane to retract their flawed review on exercise as ME treatment. Also on the forum's petition with over 9 000 signatures, including many organisations, endorsing the demand.
"Cochrane should remove the 2019 review now and then, as quickly as feasible, produce a new one that actually adheres to acceptable evidentiary standards. The entire episode threatens to batter Cochrane’s reputation, if it hasn’t already."
Article l Thread
.........
Coming events
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 NIH conference Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID
Tuesday and Wednesday, December 12-13, Bethesda, Maryland
This research conference is for "scientists, clinicians, patients and other ME/CFS stakeholders." In person and virtual attendance options. Register by Tuesday, December 5, 2023.
Details | Registration | Thread
Austria
The University of Veterinary Medicine Vienna is organising a symposium on complications following viral infections with a focus on Long COVID and ME/CFS on 20 November 2023.
Article | Thread
Serbia
The Serbian ME/CFS patient organisation has announced on facebook that on 17 November 2023 a conference will be held on Post covid syndrome and chronic fatigue syndrome with the support of the Ministry of Health.
Article | Thread
.........
See the next post for research news and research
Part 1 of 2
News, advocacy and articles
UK BACME British Association of Clinicians in ME/CFS 2023 National Services Survey Report has been published and provides "a very comprehensive view of the current provision of specialist ME/CFS care in the UK". It also includes recommendations on education of clinicians and provision of more medical specialists and services for children and the severely affected.
Report | Thread
Sweden Sweden is terminating contracts between health regions and private specialist clinics with an offer to ME patients. This will result in these centres having to close down, as the Bragée center. There are plans of developing an offer from the public health care system, but details are lacking. ME sufferer Marita Ekberg told Sveriges radio that she is now without any care at all and Dr. Bragée who founded the Bragée center says that this is a blow to the patients.
Interview Ekberg l Interview Bragée l Thread
STAT Meghan O´Rourke on a medical system not built for chronic illness - and the 'invisible kingdom' that could spur change
Interview with Megan O´Rourke, journalist and author of the book "The invisible kingdom". She talks about society's resistance to chronic illness and the need for recognition and investment in these conditions.
Article l Thread
Salon "The doctors with long COVID who have been left behind"
Article talking about the pandemic's impact on health care workers. Many have Long Covid and are either unable to work or have had to significantly reduce their hours.
Article | Thread
Dialogues for a Neglected Illness The film 'The Tangled Story of ME/CFS: Controversy, Denigration and Ignorance' is now on youtube. The series of Dialogues films were made with a Wellcome Public Engagement Fund award by Natalie Boulton & Josh Biggs, and are on the Dialogues website.
Film | Dialogues website | Thread
Norway A project titled "Standardising collaborative care pathways for adolescents and adults with CFS/ME", led by specialist in psychology Tormod Landmark, will take place in Trøndelag. From the description: "This innovation project will develop a strategy for the collaboration between the patient and services through collaborative consultations over video".
More information l Thread
Denmark The Minister of Health Sophie Løhde says it's clear that ME patients feel they are not met in a good way in the health care system. She has now allocated funds for an independent review of the latest international research into ME in order to see if the patient group can be better helped.
Article from TVsyd l Thread
Petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review - Science for ME
The petition will remain open until Cochrane no longer hosts a review that recommends exercise therapy for ME/CFS. So far over 9000 people have signed, and 58 organisations from from all over the world have signed in support of the campaign.
Petition | Petition thread | Letters and replies
Trial by Error by David Tuller
A Crap Study on "Psychosomatic Therapy" for "Persistent Somatic Symptoms"
A critique of another Dutch psychosomatic trial described as "a real mess".
"There were no statistically significant differences in the primary outcome of patient functioning and in the secondary outcomes of severity of symptoms and the frequency of health care consumption, as measured in contacts with clinicians. Yet these disappointing findings did not discourage the investigators, who concluded anyway that “the psychosomatic therapy appears promising for further study.”"
Article l Thread
"What's Going On with Cochrane's Exercise Review Mess?"
About the current correspondence where the Science for ME Forum has urged Cochrane to retract their flawed review on exercise as ME treatment. Also on the forum's petition with over 9 000 signatures, including many organisations, endorsing the demand.
"Cochrane should remove the 2019 review now and then, as quickly as feasible, produce a new one that actually adheres to acceptable evidentiary standards. The entire episode threatens to batter Cochrane’s reputation, if it hasn’t already."
Article l Thread
.........
Coming events
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 NIH conference Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID
Tuesday and Wednesday, December 12-13, Bethesda, Maryland
This research conference is for "scientists, clinicians, patients and other ME/CFS stakeholders." In person and virtual attendance options. Register by Tuesday, December 5, 2023.
Details | Registration | Thread
Austria
The University of Veterinary Medicine Vienna is organising a symposium on complications following viral infections with a focus on Long COVID and ME/CFS on 20 November 2023.
Article | Thread
Serbia
The Serbian ME/CFS patient organisation has announced on facebook that on 17 November 2023 a conference will be held on Post covid syndrome and chronic fatigue syndrome with the support of the Ministry of Health.
Article | Thread
.........
See the next post for research news and research
Week beginning 23rd October 2023
Part 2 of 2
Research news
Yale School of Medicine ME/CFS, Long COVID, and Chronic Lyme Disease Research Aided by $3 Million in Donor Gifts to Yale School of Medicine
About generous donations from Emily Fairbairn and Carol Sirot to fund the research of Akiko Iwasaki, PhD, on Long COVID, chronic Lyme disease and a biomarker for ME/CFS. Professor Iwasaki comments: "Long COVID has taught the world that these diseases are real, and we need to study them."
Article l Thread
Presentations from a recent ME conference in Sweden are available. Talks were given by Dr Bhupesh K. Prusty, Dr Eirin Apostolou, Dr Amy Proal, Dr Nigel Speight and Dr Anne Kielland.
Thread with links to videos
PolyBio Symposium A recording (4.5 hours) of this conference, held on Oct. 20, is now available. Thread has links to start times for individual talks.
Thread
UK DecodeME video The most important ME/CFS study EVER? And Taking Part in Decode ME Research! - Elinor Brown
"In this video I participated in the Decode ME study by supplying my DNA sample through the spit kit and discussed the aims, values and process of the research with a member of the Decode ME team and fellow ME/CFS patient Anna". Duration 23 minutes.
Final date for submitting the questionnaire part of the study 5pm on 15th November
Video | Take part | Thread
ME Research UK "Our autumn issue of Breakthrough magazine is now available to read online and download. It features an overview of all our most recently funded research projects, as well as a feature on the DHSC interim delivery plan."
Magazine | Thread
Chemistry World Battling long Covid with drugs
Good article on current research into Long Covid and other 'post-acute' syndromes.
Article l Thread
Health Rising blog AI to the Rescue? AI-Driven ME/CFS Project Unearths Clues Ahead of its Time by Cort Johnson
Describes the work by computer scientist Efthymios Kalafatis using machine learning and network analysis to analyse data from published research to find possible causes of ME/CFS.
Article | Thread
.........
Research
ME/CFS research
Vaccines
Chronic Fatigue and Dysautonomia following COVID-19 Vaccination Is Distinguished from Normal Vaccination Response by Altered Blood Markers - Semmler et al
191 cases and 89 controls. Found blood markers including specific antibodies that distinguished cases from controls.
Article | Thread
MDPI Nutrients
Yeast Beta-Glucan Supplementation with Multivitamins Attenuates Cognitive Impairments in Individuals with [ME/CFS]: A Randomized, Double-Blind, Placebo-Controlled Trial - Lacasa et al
Very little between group differences found.
Article | Thread
Frontiers in Pharmacology
Is there a role for traditional and complementary medicines in managing chronic fatigue? a systematic review of randomized controlled trials - Li et al.
The authors argue that there is some evidence from randomised trials that supports the efficacy and safety of traditional and complementary medicines of CFS but that it remains inconclusive due to methodological weaknesses and heterogeneity.
Article | Thread
Long Covid research
Journal of Applied Physiology
Increased intrapulmonary shunt and alveolar dead space post-COVID-19 — Catherine E. Farrow et al.
“Using direct measurement of the alveolar-arterial differences to quantify intrapulmonary shunt and alveolar dead space, we demonstrated 15–403 days after an infection with SARS-CoV-2 alveolar dead space was elevated in 86% of patients, and increased intrapulmonary shunt in 37% of patients.”
Article | Thread
Clinical Proteomics
Validation of ANG-1 and P-SEL as biomarkers of post-COVID-19 conditions using data from the Biobanque québécoise de la COVID-19 (BQC-19) — Yamga et al.
“Both ANG-1 and P-SEL levels were significantly higher in patients with PCC participants compared with control subjects at 3 months using the Mann-Whitney U test.”
Article | Thread
Brain and Behavior
Persistent post-COVID headache is associated with suppression of scale-free functional brain dynamics in non-hospitalized individuals — Nathan W. Churchill et al.
“Overall, the results of this study provide strong preliminary evidence that the headache component of PACS has a neural signature associated with power-law scaling in resting-state BOLD fMRI signals.”
Article | Thread
Journal of Neurology
A hypoarousal model of neurological post-COVID syndrome: the relation between mental fatigue, the level of central nervous activation and cognitive processing speed — Martin et al.
“[Visual processing speed] was predicted by the level of central nervous activation measured through [pupillary unrest index] and by the level of mental fatigue measured through self-rating.”
Article | Thread
International Journal of Molecular Sciences
Preliminary Evidence of the Differential Expression of Human Endogenous Retroviruses in Kawasaki Disease and SARS-CoV-2-Associated Multisystem Inflammatory Syndrome in Children — Balestrieri et al.
“Our findings point out a general deregulation of the transcriptional activity of HERVs, syncytin-1, and its putative receptors, as well as inflammatory mediators in patients affected by COVID-19, MIS-C, and KD.”
Article | Thread
Preprint: BioRxiv
SARS-CoV-2 induces acute neurological signs while Calcitonin Gene-Related Peptide (CGRP) signaling blockade reduces interleukin 6 (IL-6) release and weight loss in mouse models — Shafaqat M Rahman et al.
“While CGRP has pleotropic effects on the immune system, CGRP release occurs as a result of SARS-CoV-2 activation of the transient receptor potential (TRP) channels; and is implicated in COVID-19 neurological symptoms such as fever, headache, dizziness, nausea pain, and the subsequent release of interleukin 6 (IL-6).”
Article | Thread
University of Surrey
A qualitative study to explore children's experience of having long-Covid - Noorderhaven
This thesis aimed to investigate the lived experience of children with long-COVID. It includes a systematic review of the experiences of parents who provide care for a child with ME/CFS.
Thesis | Thread
Journal of Evaluation in Clinical Practice
Long covid and how medical information is causing illness: A philosophical issue affecting public health - Vogt & Garner
Henrik Vogt and Paul Garner argue that "the framing of post-covid condition by mainstream medicine may actually be contributing to the illness."
Article | Thread
.........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research news
Yale School of Medicine ME/CFS, Long COVID, and Chronic Lyme Disease Research Aided by $3 Million in Donor Gifts to Yale School of Medicine
About generous donations from Emily Fairbairn and Carol Sirot to fund the research of Akiko Iwasaki, PhD, on Long COVID, chronic Lyme disease and a biomarker for ME/CFS. Professor Iwasaki comments: "Long COVID has taught the world that these diseases are real, and we need to study them."
Article l Thread
Presentations from a recent ME conference in Sweden are available. Talks were given by Dr Bhupesh K. Prusty, Dr Eirin Apostolou, Dr Amy Proal, Dr Nigel Speight and Dr Anne Kielland.
Thread with links to videos
PolyBio Symposium A recording (4.5 hours) of this conference, held on Oct. 20, is now available. Thread has links to start times for individual talks.
Thread
UK DecodeME video The most important ME/CFS study EVER? And Taking Part in Decode ME Research! - Elinor Brown
"In this video I participated in the Decode ME study by supplying my DNA sample through the spit kit and discussed the aims, values and process of the research with a member of the Decode ME team and fellow ME/CFS patient Anna". Duration 23 minutes.
Final date for submitting the questionnaire part of the study 5pm on 15th November
Video | Take part | Thread
ME Research UK "Our autumn issue of Breakthrough magazine is now available to read online and download. It features an overview of all our most recently funded research projects, as well as a feature on the DHSC interim delivery plan."
Magazine | Thread
Chemistry World Battling long Covid with drugs
Good article on current research into Long Covid and other 'post-acute' syndromes.
Article l Thread
Health Rising blog AI to the Rescue? AI-Driven ME/CFS Project Unearths Clues Ahead of its Time by Cort Johnson
Describes the work by computer scientist Efthymios Kalafatis using machine learning and network analysis to analyse data from published research to find possible causes of ME/CFS.
Article | Thread
.........
Research
ME/CFS research
Vaccines
Chronic Fatigue and Dysautonomia following COVID-19 Vaccination Is Distinguished from Normal Vaccination Response by Altered Blood Markers - Semmler et al
191 cases and 89 controls. Found blood markers including specific antibodies that distinguished cases from controls.
Article | Thread
MDPI Nutrients
Yeast Beta-Glucan Supplementation with Multivitamins Attenuates Cognitive Impairments in Individuals with [ME/CFS]: A Randomized, Double-Blind, Placebo-Controlled Trial - Lacasa et al
Very little between group differences found.
Article | Thread
Frontiers in Pharmacology
Is there a role for traditional and complementary medicines in managing chronic fatigue? a systematic review of randomized controlled trials - Li et al.
The authors argue that there is some evidence from randomised trials that supports the efficacy and safety of traditional and complementary medicines of CFS but that it remains inconclusive due to methodological weaknesses and heterogeneity.
Article | Thread
Long Covid research
Journal of Applied Physiology
Increased intrapulmonary shunt and alveolar dead space post-COVID-19 — Catherine E. Farrow et al.
“Using direct measurement of the alveolar-arterial differences to quantify intrapulmonary shunt and alveolar dead space, we demonstrated 15–403 days after an infection with SARS-CoV-2 alveolar dead space was elevated in 86% of patients, and increased intrapulmonary shunt in 37% of patients.”
Article | Thread
Clinical Proteomics
Validation of ANG-1 and P-SEL as biomarkers of post-COVID-19 conditions using data from the Biobanque québécoise de la COVID-19 (BQC-19) — Yamga et al.
“Both ANG-1 and P-SEL levels were significantly higher in patients with PCC participants compared with control subjects at 3 months using the Mann-Whitney U test.”
Article | Thread
Brain and Behavior
Persistent post-COVID headache is associated with suppression of scale-free functional brain dynamics in non-hospitalized individuals — Nathan W. Churchill et al.
“Overall, the results of this study provide strong preliminary evidence that the headache component of PACS has a neural signature associated with power-law scaling in resting-state BOLD fMRI signals.”
Article | Thread
Journal of Neurology
A hypoarousal model of neurological post-COVID syndrome: the relation between mental fatigue, the level of central nervous activation and cognitive processing speed — Martin et al.
“[Visual processing speed] was predicted by the level of central nervous activation measured through [pupillary unrest index] and by the level of mental fatigue measured through self-rating.”
Article | Thread
International Journal of Molecular Sciences
Preliminary Evidence of the Differential Expression of Human Endogenous Retroviruses in Kawasaki Disease and SARS-CoV-2-Associated Multisystem Inflammatory Syndrome in Children — Balestrieri et al.
“Our findings point out a general deregulation of the transcriptional activity of HERVs, syncytin-1, and its putative receptors, as well as inflammatory mediators in patients affected by COVID-19, MIS-C, and KD.”
Article | Thread
Preprint: BioRxiv
SARS-CoV-2 induces acute neurological signs while Calcitonin Gene-Related Peptide (CGRP) signaling blockade reduces interleukin 6 (IL-6) release and weight loss in mouse models — Shafaqat M Rahman et al.
“While CGRP has pleotropic effects on the immune system, CGRP release occurs as a result of SARS-CoV-2 activation of the transient receptor potential (TRP) channels; and is implicated in COVID-19 neurological symptoms such as fever, headache, dizziness, nausea pain, and the subsequent release of interleukin 6 (IL-6).”
Article | Thread
University of Surrey
A qualitative study to explore children's experience of having long-Covid - Noorderhaven
This thesis aimed to investigate the lived experience of children with long-COVID. It includes a systematic review of the experiences of parents who provide care for a child with ME/CFS.
Thesis | Thread
Journal of Evaluation in Clinical Practice
Long covid and how medical information is causing illness: A philosophical issue affecting public health - Vogt & Garner
Henrik Vogt and Paul Garner argue that "the framing of post-covid condition by mainstream medicine may actually be contributing to the illness."
Article | Thread
.........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube