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News in Brief - May 2023
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Week beginning 1st May 2023
News and articles
PEM A new and excellent information video from BrokenBattery which in just two minutes explains Post Exertional Malaise (PEM).
Video l Thread
Dr David Putrino who researches ME/CFS and Long Covid has written a moving Twitter thread about his experience of visiting a person with very severe ME/CFS and their carers. "I wanted to share how overwhelmed I was by the dignity, grace and selflessness on display by this individual in the face of unimaginable suffering... We are learning so much from this extraordinary community and we are endlessly appreciative of the kindness, selflessness and partnership that you continue to entrust us with. Thank you."
Twitter thread | Forum thread
Trial by Error by David Tuller Mt Sinai's David Putrino on Long Covid and Functional Neurological Disorder
An interesting conversation with neuroscientist and physical therapist David Putrino based on a Twitter thread from Putrino on why Long Covid isn't a functional neurological disorder (FND).
Interview l Thread
#MEAction and Mayo Clinic were awarded a grant last year to build a diagnostic and treatment algorithm for people with ME/CFS. The new algorithm, part of Mayo's AskMayoExpert tool, is now live.
Article | Thread
Long Covid Advocacy The Wessely Files
Part Two - The Wessely Wizard of Oz
The second in a series of articles about Professor Sir Simon Wessely. See March news for our item on part 1. This article focuses on ways Wessely has accrued power for himself and his views, including appointment to powerful positions in the British medical and political establishment and influence on the media, and the detrimental impact this has on people with ME/CFS and Long Covid.
Article | Thread
Nature has two articles on the funding disparity in women's healthcare, an editorial ("Women’s health: end the disparity in funding") and an "immersive" experience website with diagrams ("Women’s health research lacks funding – these charts show how"). ME/CFS is mentioned as an example of a disease that is underfunded.
Editorial | Immersive | Thread
Jama How Primary Care Physicians Can Recognise and Treat Long COVID
The article says that approaches to conditions such as ME/CFS and others can help some patients with long COVID. Includes interview with among others Dr. Lucinda Bateman and mentions resources for ME/CFS at the Bateman Horne Center.
Article l Thread
Book Cambridge University Press has published a book titled "Fads and Fallacies in Psychiatry" by retired psychiatry professor Joel Paris in which he describes chronic fatigue syndrome and fibromyalgia as mental disorders and fads, quoting outdated ideas of, among others, Shorter and Wessely.
Book | Thread
.............
Coming events
ME Awareness day/week/month May 2023
World ME Day, also known as ME/CFS International Awareness Day, is May 12. Our forum has a thread for events planned during May.
Thread
Minnesota ME/CFS Alliance will host two guest speakers, Terri Wilder, chair of ME Action Minnesota, and Stephanie Grach, MD, from the Mayo Clinic, on May 11 at 3 PM Central Time.
Announcement | Thread
UK APPG All-Party Parliamentary Group on M.E. Annual General Meeting is on Wednesday 10 May at 2pm. It will include a one year-on review of the implementation of the NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation responded to by 106 ICB’s and NHS Trusts.
The MEA has provided a template letter to invite your MP to attend.
MEA article | Thread
Germany
On 11 and 12 May the Charité Fatigue Center (CFC) will host its 2nd international meeting on understanding diagnosing and treating ME/CFS. Speakers include Anthony Komarof, Leonard Jason, Carmen Scheibenbogen and Bhupesh Prusty amongst others.
Article | Thread
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call
CDC program updates and guest speaker Dr. Jack Skarbinski.
Wednesday, May 17, 3 pm Eastern Time
Thread
INIM 2023 Conference
Institute for Neuro-Immune Medicine, Nova Southeastern University - Florida
Friday, May 19
12:30 to 5:00 PM Eastern Time
Event Details | Thread
Bateman Horne Center - Free Online Support Group
Advanced registration required
Topic: Crash Survival and Pacing
Tuesday, May 16, 1 - 2 PM Mountain Time
Announcement | Thread
Bateman Horne Center - Lunch and Learn
Topic: Making Household Tasks Easier
Thursday, May 18, 11:30 AM - 1:30 PM Mountain Time
Announcement | Thread
UK Invest in ME Research Conference week: 30th May European ME Research group meeting; 31st May - 1st June Researchers' Colloquium; 2nd June Conference open to all; 3rd June Young/Early Career researchers' workshop.
Details | Thread
.............
In Memoriam
Dr. Mary Ann Fletcher, professor emerita at the University of Miami School of Medicine who did research on Gulf War Illness and ME/CFS, passed away in April.
Obituary | Thread
..............
Research news
UK Research and Innovation Researching ME/CFS: highlight notice
Funded by the Medical Research Council, this was first announced in 2003. It has now been updated. "We would particularly welcome proposals within MRC remit that address 1 or more of the research areas identified by the ME/CFS Priority Setting Partnership for ME/CFS research" The 11 priorities listed include biomedical topics, PEM and severe ME/CFS.
Details | Thread
UK DecodeME has reached 10,000 participants invited to send a saliva sample for DNA extraction. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
Open Medicine Foundation (OMF) has announced StudyME, a tool to "connect individuals interested in participating in research studies with the researchers conducting them."
Website | Thread
NIH news: "NIH study identifies features of Long COVID neurological symptoms"
Findings offer insight into biological mechanisms, pointing to possible treatments.
Announcement | Thread
.............
Research
ME/CFS research
American Journal of Respiratory and Critical Care Medicine
Conference abstract: ME/CFS Pathophysiology Investigated by Invasive Cardiopulmonary Exercise Testing and Autonomic Function Testing - Squires, Systrom et al.
Results of iCPET for 62 patients with demonstrated preload failure, 54 of them with ME/CFS, were correlated with outcomes of Tilt table testing in the same patients. The abstract concludes: "Decreased oxygen uptake and cardiac output at peak exercise during iCPET correlated with a greater change in heart rate and ETCO from supine to upright during TTT. There appears to be significant overlap of cardiopulmonary pathophysiology in ME/CFS underlying exercise and orthostatic symptoms."
Abstract | Thread
Heliyon
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland - Tshopp et al.
This study publishes the results of a survey on 169 ME/CFS patients from the Swiss ME/CFS association. Half (50.3%) stated their condition was progressively worsening and 82% had co-morbidities.
Article | Thread
Isr Med Ass J.
Modulation of Beta-Adrenergic Autoantibodies Over Time in Post-Viral ME/CFS is Related to Fatigue and Pain Symptoms - Busch et al
A case study of one patient found some differences in antibodies between two time points that correlated with symptom severity.
Paper | Thread
Long Covid research
Neurology - Neuroimmunology Neuroinflammation
Deep Phenotyping of Neurologic Postacute Sequelae of SARS-CoV-2 Infection — Yair Mina et al.
“The preliminary findings suggesting broad immune dysregulation in the CSF call for further investigation and for evaluation of potential immunomodulatory agents in an effort to decrease the huge public health burden of this syndrome.”
Article | Thread
eLife
Viral persistence, reactivation, and mechanisms of long COVID — Benjamin Chen et al.
RECOVER Mechanistic Pathways Task Force. “In this review, we focus on the emerging literature supporting the role(s) that viral persistence or reactivation of viruses may play in PASC.”
Article | Thread
European Radiology
Pulmonary circulation abnormalities in post-acute COVID-19 syndrome: dual-energy CT angiographic findings in 79 patients — Mohamed et al.
“… this study shows a striking difference between the limited extent of CT features of COVID-19 pneumonia and the presence of numerous abnormalities at the level of lung microcirculation in the year following hospitalization.”
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News and articles
PEM A new and excellent information video from BrokenBattery which in just two minutes explains Post Exertional Malaise (PEM).
Video l Thread
Dr David Putrino who researches ME/CFS and Long Covid has written a moving Twitter thread about his experience of visiting a person with very severe ME/CFS and their carers. "I wanted to share how overwhelmed I was by the dignity, grace and selflessness on display by this individual in the face of unimaginable suffering... We are learning so much from this extraordinary community and we are endlessly appreciative of the kindness, selflessness and partnership that you continue to entrust us with. Thank you."
Twitter thread | Forum thread
Trial by Error by David Tuller Mt Sinai's David Putrino on Long Covid and Functional Neurological Disorder
An interesting conversation with neuroscientist and physical therapist David Putrino based on a Twitter thread from Putrino on why Long Covid isn't a functional neurological disorder (FND).
Interview l Thread
#MEAction and Mayo Clinic were awarded a grant last year to build a diagnostic and treatment algorithm for people with ME/CFS. The new algorithm, part of Mayo's AskMayoExpert tool, is now live.
Article | Thread
Long Covid Advocacy The Wessely Files
Part Two - The Wessely Wizard of Oz
The second in a series of articles about Professor Sir Simon Wessely. See March news for our item on part 1. This article focuses on ways Wessely has accrued power for himself and his views, including appointment to powerful positions in the British medical and political establishment and influence on the media, and the detrimental impact this has on people with ME/CFS and Long Covid.
Article | Thread
Nature has two articles on the funding disparity in women's healthcare, an editorial ("Women’s health: end the disparity in funding") and an "immersive" experience website with diagrams ("Women’s health research lacks funding – these charts show how"). ME/CFS is mentioned as an example of a disease that is underfunded.
Editorial | Immersive | Thread
Jama How Primary Care Physicians Can Recognise and Treat Long COVID
The article says that approaches to conditions such as ME/CFS and others can help some patients with long COVID. Includes interview with among others Dr. Lucinda Bateman and mentions resources for ME/CFS at the Bateman Horne Center.
Article l Thread
Book Cambridge University Press has published a book titled "Fads and Fallacies in Psychiatry" by retired psychiatry professor Joel Paris in which he describes chronic fatigue syndrome and fibromyalgia as mental disorders and fads, quoting outdated ideas of, among others, Shorter and Wessely.
Book | Thread
.............
Coming events
ME Awareness day/week/month May 2023
World ME Day, also known as ME/CFS International Awareness Day, is May 12. Our forum has a thread for events planned during May.
Thread
Minnesota ME/CFS Alliance will host two guest speakers, Terri Wilder, chair of ME Action Minnesota, and Stephanie Grach, MD, from the Mayo Clinic, on May 11 at 3 PM Central Time.
Announcement | Thread
UK APPG All-Party Parliamentary Group on M.E. Annual General Meeting is on Wednesday 10 May at 2pm. It will include a one year-on review of the implementation of the NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation responded to by 106 ICB’s and NHS Trusts.
The MEA has provided a template letter to invite your MP to attend.
MEA article | Thread
Germany
On 11 and 12 May the Charité Fatigue Center (CFC) will host its 2nd international meeting on understanding diagnosing and treating ME/CFS. Speakers include Anthony Komarof, Leonard Jason, Carmen Scheibenbogen and Bhupesh Prusty amongst others.
Article | Thread
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call
CDC program updates and guest speaker Dr. Jack Skarbinski.
Wednesday, May 17, 3 pm Eastern Time
Thread
INIM 2023 Conference
Institute for Neuro-Immune Medicine, Nova Southeastern University - Florida
Friday, May 19
12:30 to 5:00 PM Eastern Time
Event Details | Thread
Bateman Horne Center - Free Online Support Group
Advanced registration required
Topic: Crash Survival and Pacing
Tuesday, May 16, 1 - 2 PM Mountain Time
Announcement | Thread
Bateman Horne Center - Lunch and Learn
Topic: Making Household Tasks Easier
Thursday, May 18, 11:30 AM - 1:30 PM Mountain Time
Announcement | Thread
UK Invest in ME Research Conference week: 30th May European ME Research group meeting; 31st May - 1st June Researchers' Colloquium; 2nd June Conference open to all; 3rd June Young/Early Career researchers' workshop.
Details | Thread
.............
In Memoriam
Dr. Mary Ann Fletcher, professor emerita at the University of Miami School of Medicine who did research on Gulf War Illness and ME/CFS, passed away in April.
Obituary | Thread
..............
Research news
UK Research and Innovation Researching ME/CFS: highlight notice
Funded by the Medical Research Council, this was first announced in 2003. It has now been updated. "We would particularly welcome proposals within MRC remit that address 1 or more of the research areas identified by the ME/CFS Priority Setting Partnership for ME/CFS research" The 11 priorities listed include biomedical topics, PEM and severe ME/CFS.
Details | Thread
UK DecodeME has reached 10,000 participants invited to send a saliva sample for DNA extraction. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
Open Medicine Foundation (OMF) has announced StudyME, a tool to "connect individuals interested in participating in research studies with the researchers conducting them."
Website | Thread
NIH news: "NIH study identifies features of Long COVID neurological symptoms"
Findings offer insight into biological mechanisms, pointing to possible treatments.
Announcement | Thread
.............
Research
ME/CFS research
American Journal of Respiratory and Critical Care Medicine
Conference abstract: ME/CFS Pathophysiology Investigated by Invasive Cardiopulmonary Exercise Testing and Autonomic Function Testing - Squires, Systrom et al.
Results of iCPET for 62 patients with demonstrated preload failure, 54 of them with ME/CFS, were correlated with outcomes of Tilt table testing in the same patients. The abstract concludes: "Decreased oxygen uptake and cardiac output at peak exercise during iCPET correlated with a greater change in heart rate and ETCO from supine to upright during TTT. There appears to be significant overlap of cardiopulmonary pathophysiology in ME/CFS underlying exercise and orthostatic symptoms."
Abstract | Thread
Heliyon
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland - Tshopp et al.
This study publishes the results of a survey on 169 ME/CFS patients from the Swiss ME/CFS association. Half (50.3%) stated their condition was progressively worsening and 82% had co-morbidities.
Article | Thread
Isr Med Ass J.
Modulation of Beta-Adrenergic Autoantibodies Over Time in Post-Viral ME/CFS is Related to Fatigue and Pain Symptoms - Busch et al
A case study of one patient found some differences in antibodies between two time points that correlated with symptom severity.
Paper | Thread
Long Covid research
Neurology - Neuroimmunology Neuroinflammation
Deep Phenotyping of Neurologic Postacute Sequelae of SARS-CoV-2 Infection — Yair Mina et al.
“The preliminary findings suggesting broad immune dysregulation in the CSF call for further investigation and for evaluation of potential immunomodulatory agents in an effort to decrease the huge public health burden of this syndrome.”
Article | Thread
eLife
Viral persistence, reactivation, and mechanisms of long COVID — Benjamin Chen et al.
RECOVER Mechanistic Pathways Task Force. “In this review, we focus on the emerging literature supporting the role(s) that viral persistence or reactivation of viruses may play in PASC.”
Article | Thread
European Radiology
Pulmonary circulation abnormalities in post-acute COVID-19 syndrome: dual-energy CT angiographic findings in 79 patients — Mohamed et al.
“… this study shows a striking difference between the limited extent of CT features of COVID-19 pneumonia and the presence of numerous abnormalities at the level of lung microcirculation in the year following hospitalization.”
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 8th May 2023
Part 1 of 2
News, articles and advocacy
International ME Awareness Day 12th May
In Washington DC Long COVID & ME/CFS communities demonstrated on the National Mall with the installation of 300 cots to represent the millions of people missing from their lives. On the cots were pillow cases patients had designed.
Press conference l Video of pillow cases
Organisations, patients and carers have marked the day with many events in several countries. Thank you to everyone who has contributed with organising, contacted the media and to those who have shared on social media. See thread for more.
Thread
Trial by Error by David Tuller A Day in the Life of Anil van der Zee
Dr Tuller shares a recent video from his friend and patient advocate Anil van der Zee who suffers from severe ME. Anil has made a video that documents his everyday life. He writes: "It might give you a unique insight into what the disease forces you to do. I’ve tried not to hold back on any details, including the private ones, and show a step-by-step guide through my day".
Article with video l Thread
Germany
Akiko Iwasaki has been awarded the Else Kröner Fresenius Prize for Medical Research 2023 for her research on long COVID. The award comes with a prize of 2.5 million euros.
Article | Thread
Iceland The Icelandic government has announced an establishment of an ME knowledge center in Akureyri. The center will be assisting GPs in diagnostics and provide patients with advice. It will also be a coordinating body for nationwide services, as well as mapping the disease and promoting research into it.
Announcement l Thread
Germany
A request from the Union faction (20/4886) on ME/CFS was rejected by the majority of the traffic light coalition of SPD, Greens and FDP. Journalist Martin Rücker notes that help for ME/CFS-affected has become the subject of party-political disputes.
Article | Thread
ANZMES Know M.E. Series Special Episode Part One: ME/CFS, disability and health equity.
"ANZMES president Fiona Charlton speaks with Dr. Neera Jain and Kate Waterworth about ME/CFS, disability, health equity, and the ANZMES petition to reclassify ME/CFS as a disability." Duration 35 minutes.
Video | Thread
Emerge Australia Links Between ME/CFS And Long COVID Position Statement
A response to a government report that says the two conditions should be treated separately. "Emerge Australia strongly advocates for more research into the overlaps between ME/CFS and Long COVID."
Statement | Thread
Sweden
The Swedish Agency for Health Technology Assessment and Assessment of Social Services has been tasked by the government to gather information about postcovid and other post infectious conditions including ME/CFS by August 2024.
More information l Thread
On a Swedish TV morning show, Cecilia with husband and son tells about living with ME.
Nyhetsmorgon l Thread
Norway
Emilie Brandshaug has written an opinion piece urging the Minster of Health to help Aurora, a fellow severe ME sufferer who is deteriorating in an institution.
Opinion piece l Thread
TV2 has an article about 24 year old Maria who suffers from severe ME and is sharing videos about ME and her life on TikTok
Article l Thread
20 year old severe ME sufferer Eline has written an opinion piece about what she is missing out on, and also about what living with ME has taught her.
Opinion piece l Thread
BBC Look North Forum member Adam pwme has shared on Twitter a clip from the BBC about Freya who is suffering from Long Covid and Chronic Fatigue Syndrome. Professor Stephen Griffin says at the moment there are over 50 000 children in the UK who has been suffering from Long Covid for more than 12 months.
Tweet with clip l Thread
Scotland STV news
'I've battled ME my entire adult life - the help is still not there'
Campaigner Karima Rahman said thousands are being left to deal with the 'debilitating' condition due to lack of support.
Article with link to video | Thread
STV News about ME Action Scotland who are asking for more funding and to educate doctors about the disease.
TV segment on Twitter l Thread
Marathon Mike Mike Harley has written a report of his recent maraton in Bergen, Norway with description and pictures. He raised £900 for Invest In ME.
Article (scroll to the end of page) l Thread
..............
Useful resources
Doctors with ME ME/CFS: Top Tips Handout for Doctors
A useful 5 page pdf that summarises for doctors key information about ME/CFS including symptoms, diagnosis, advice on management - including 'first do no harm', accessible care and regular reviews.
Website| Handout | Thread
..............
Research news
Conference report 2nd International Meeting of the Charité Fatigue Center
ME/CFS Conference 2023 - Understand, Diagnose, Treat
The conference was on Thursday and Friday this week. Some forum members attended, mostly online, and have written brief notes on our forum thread. Some of the talks will be made available later.
Thursday's topics focused on biomedical research including some as yet unpublished findings, with several talks on aspects of autoimmunity, and diagnosis. Dr Prusty's talk has generated social media attention. Friday focused on treatment including symptomatic treatment, off-label drugs, immunoabsorption, updates on ongoing clinical trials, and other aspects of clinical care.
Thread | Thread discussing Dr Prusty's talk
UK - ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services.
"The ME Association is very pleased to announce that a £90,000 research grant has been made for a 12-month study that will enable Professor Sarah Tyson (Manchester), Dr Mike Horton (Leeds), and Dr Peter Gladwell (Bristol), to apply gold-standard techniques and develop patient-reported outcome measures (PROMs) and a clinical assessment toolkit to monitor people with ME/CFS who use NHS specialist services."
Article | Thread
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
STAT Key House Democrat demands NIH answer for pace of long Covid research
Rep. Anna Eshoo has sent a letter to NIH about its slow progress in addressing long Covid. She writes: "Congress entrusted NIH with significant funding to provide relief to our constituents suffering from this life-altering disease, but so far, it hasn't delivered that relief".
Article (paywalled) l Thread
Medscape Clinical Trials: Top Priority for Long COVID - by patient-researcher and cofounder of the Patient-Led Research Collaborative Hannah Davis
"This article aims to share key considerations and best practices that are essential to the success of these trials. These recommendations recognise that roughly half of long COVID patients have new-onset myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia from COVID, which must be at the forefront of how trials are designed and conducted, and are additionally based on the current hypothesis about Long Covid's pathophysiologies".
Article l Thread
..............
Continued in part 2 below...
Part 1 of 2
News, articles and advocacy
International ME Awareness Day 12th May
In Washington DC Long COVID & ME/CFS communities demonstrated on the National Mall with the installation of 300 cots to represent the millions of people missing from their lives. On the cots were pillow cases patients had designed.
Press conference l Video of pillow cases
Organisations, patients and carers have marked the day with many events in several countries. Thank you to everyone who has contributed with organising, contacted the media and to those who have shared on social media. See thread for more.
Thread
Trial by Error by David Tuller A Day in the Life of Anil van der Zee
Dr Tuller shares a recent video from his friend and patient advocate Anil van der Zee who suffers from severe ME. Anil has made a video that documents his everyday life. He writes: "It might give you a unique insight into what the disease forces you to do. I’ve tried not to hold back on any details, including the private ones, and show a step-by-step guide through my day".
Article with video l Thread
Germany
Akiko Iwasaki has been awarded the Else Kröner Fresenius Prize for Medical Research 2023 for her research on long COVID. The award comes with a prize of 2.5 million euros.
Article | Thread
Iceland The Icelandic government has announced an establishment of an ME knowledge center in Akureyri. The center will be assisting GPs in diagnostics and provide patients with advice. It will also be a coordinating body for nationwide services, as well as mapping the disease and promoting research into it.
Announcement l Thread
Germany
A request from the Union faction (20/4886) on ME/CFS was rejected by the majority of the traffic light coalition of SPD, Greens and FDP. Journalist Martin Rücker notes that help for ME/CFS-affected has become the subject of party-political disputes.
Article | Thread
ANZMES Know M.E. Series Special Episode Part One: ME/CFS, disability and health equity.
"ANZMES president Fiona Charlton speaks with Dr. Neera Jain and Kate Waterworth about ME/CFS, disability, health equity, and the ANZMES petition to reclassify ME/CFS as a disability." Duration 35 minutes.
Video | Thread
Emerge Australia Links Between ME/CFS And Long COVID Position Statement
A response to a government report that says the two conditions should be treated separately. "Emerge Australia strongly advocates for more research into the overlaps between ME/CFS and Long COVID."
Statement | Thread
Sweden
The Swedish Agency for Health Technology Assessment and Assessment of Social Services has been tasked by the government to gather information about postcovid and other post infectious conditions including ME/CFS by August 2024.
More information l Thread
On a Swedish TV morning show, Cecilia with husband and son tells about living with ME.
Nyhetsmorgon l Thread
Norway
Emilie Brandshaug has written an opinion piece urging the Minster of Health to help Aurora, a fellow severe ME sufferer who is deteriorating in an institution.
Opinion piece l Thread
TV2 has an article about 24 year old Maria who suffers from severe ME and is sharing videos about ME and her life on TikTok
Article l Thread
20 year old severe ME sufferer Eline has written an opinion piece about what she is missing out on, and also about what living with ME has taught her.
Opinion piece l Thread
BBC Look North Forum member Adam pwme has shared on Twitter a clip from the BBC about Freya who is suffering from Long Covid and Chronic Fatigue Syndrome. Professor Stephen Griffin says at the moment there are over 50 000 children in the UK who has been suffering from Long Covid for more than 12 months.
Tweet with clip l Thread
Scotland STV news
'I've battled ME my entire adult life - the help is still not there'
Campaigner Karima Rahman said thousands are being left to deal with the 'debilitating' condition due to lack of support.
Article with link to video | Thread
STV News about ME Action Scotland who are asking for more funding and to educate doctors about the disease.
TV segment on Twitter l Thread
Marathon Mike Mike Harley has written a report of his recent maraton in Bergen, Norway with description and pictures. He raised £900 for Invest In ME.
Article (scroll to the end of page) l Thread
..............
Useful resources
Doctors with ME ME/CFS: Top Tips Handout for Doctors
A useful 5 page pdf that summarises for doctors key information about ME/CFS including symptoms, diagnosis, advice on management - including 'first do no harm', accessible care and regular reviews.
Website| Handout | Thread
..............
Research news
Conference report 2nd International Meeting of the Charité Fatigue Center
ME/CFS Conference 2023 - Understand, Diagnose, Treat
The conference was on Thursday and Friday this week. Some forum members attended, mostly online, and have written brief notes on our forum thread. Some of the talks will be made available later.
Thursday's topics focused on biomedical research including some as yet unpublished findings, with several talks on aspects of autoimmunity, and diagnosis. Dr Prusty's talk has generated social media attention. Friday focused on treatment including symptomatic treatment, off-label drugs, immunoabsorption, updates on ongoing clinical trials, and other aspects of clinical care.
Thread | Thread discussing Dr Prusty's talk
UK - ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services.
"The ME Association is very pleased to announce that a £90,000 research grant has been made for a 12-month study that will enable Professor Sarah Tyson (Manchester), Dr Mike Horton (Leeds), and Dr Peter Gladwell (Bristol), to apply gold-standard techniques and develop patient-reported outcome measures (PROMs) and a clinical assessment toolkit to monitor people with ME/CFS who use NHS specialist services."
Article | Thread
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
STAT Key House Democrat demands NIH answer for pace of long Covid research
Rep. Anna Eshoo has sent a letter to NIH about its slow progress in addressing long Covid. She writes: "Congress entrusted NIH with significant funding to provide relief to our constituents suffering from this life-altering disease, but so far, it hasn't delivered that relief".
Article (paywalled) l Thread
Medscape Clinical Trials: Top Priority for Long COVID - by patient-researcher and cofounder of the Patient-Led Research Collaborative Hannah Davis
"This article aims to share key considerations and best practices that are essential to the success of these trials. These recommendations recognise that roughly half of long COVID patients have new-onset myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia from COVID, which must be at the forefront of how trials are designed and conducted, and are additionally based on the current hypothesis about Long Covid's pathophysiologies".
Article l Thread
..............
Continued in part 2 below...
Week beginning 8th May 2023
Part 2 of 2
Research
ME/CFS research
Journal of Translational Medicine
Proteomics and cytokine analyses distinguish ME/CFS cases from controls - Giloteaux, Hanson et al.
The researchers analysed the cytokine content of "extracellular vesicles (EVs) from frozen plasma samples from a cohort of ME/CFS cases and controls with prior published plasma cytokine and plasma proteomics data."
The abstract concludes: "These findings add to the substantial number of objective differences in biomolecules that have been identified in individuals with ME/CFS. The observed correlations of proteins important in immune responses and hemostasis with clinical data further implicates a disturbance of these functions in ME/CFS."
Paper | Thread
International Journal of Molecular Sciences
Detection of Elevated Level of Tetrahydrobiopterin in Serum Samples of ME/CFS Patients with Orthostatic Intolerance: A Pilot Study - Gottschalk et al.
Tetrahydrobiopterin (BH4) expression in the serum of a 32 ME/CFS patients was found to be significantly high compared to matched controls, and "might be associated with the oxidative stress response."
Paper | Thread
Fatigue: Biomedicine, Health & Behavior
Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome - Jones et al.
The authors argue that measures used in many NHS ME/CFS services capture patients’ experiences only moderately well. There are activities that patients value that are not captured by these measures.
Article | Thread
British Medical Bulletin
Whole-body cryotherapy as a treatment for chronic medical conditions? - Tabisz et al.
The research group of Pawel Zalewski explores whole-body cryotherapy, a controlled exposure of the whole body to cold to gain health benefits. They think it might serve as adjuvant therapy in multi-systemic disorders, including ME/CFS.
Article | Thread
Frontiers in Psychiatry
Efficacy of mindfulness- and acceptance-based cognitive-behavioral therapies for bodily distress in adults: a meta-analysis - Bermpohl et al.
The authors found 12 randomized trials that tested mindfulness- and acceptance-based cognitive-behavioral therapies for bodily distress, including 2 on chronic fatigue syndrome.
Article | Thread
Long Covid research
Open Forum Infectious Diseases
Systematic review of the prevalence of Long Covid — Woodrow et al.
“The review found that Long Covid presents a significant burden of functional disability, symptoms and pathology, with a pooled estimate of 34.5% of people not returning to full health/fitness after at least 12 weeks, and estimates of the most common symptoms/pathology including lung pathology (38.9%), fatigue (34.5%), breathing problems (14.9%), sleep problems (13.2%) and tingling or itching (11.3%). The paucity of long-term longitudinal studies following individuals’ disease progression means it is difficult to comment on which symptoms are most persistent over time.”
Article | Thread
Journal of the Royal Society of Medicine
Socioeconomic inequalities of Long COVID: a retrospective population-based cohort study in the United Kingdom — Sharmin Shabnam et al.
“We conducted a retrospective population-based cohort study using data from the ONS COVID-19 Infection Survey between 26 April 2020 and 31 January 2022. This is the largest nationally representative survey of COVID-19 in the UK with longitudinal data on occupation, COVID-19 exposure and Long COVID.”
“Nearly 10% (n = 19,315) of participants reported having Long COVID.”
Article | Thread
Brain : a journal of neurology
Neurologic sequelae of COVID-19 are determined by immunologic imprinting from previous coronaviruses — Spatola M et al.
“Overall, these findings point to a pathogenic role for compromised anti-SARS-CoV-2 responses in the CSF, likely resulting in incomplete virus clearance from the brain and persistent neuroinflammation, in the development of post-acute neurologic complications of SARS-CoV-2 infection.”
Article | Thread
Lancet: eBioMedicine
Post COVID-19 condition after delta infection and omicron reinfection in children and adolescents — Nina Urke Ertesvåg et al.
“The association between antibody titres and long-term symptoms previously described in adults can in this study be extended to children. Hence, an immune dysfunction may also be involved in maintaining symptoms in children as observed in adolescents after other viral infections.”
Article | Thread
Preprint: Research Square
Long-term symptoms after SARS-CoV-2 infection in a cohort of hospital employees: duration and predictive factors — Rosalie Gruber et al.
“Our main finding is that a low initial Ct value representing a high initial viral load is a predictor for prolonged COVID-19 course over 90 days. Other identified predictive factors for long-term courses of COVID-19 were a definitely nosocomial SARS-CoV-2 transmission and the presence of breathlessness, anosmia or ageusia within the first 10 days.”
Article | Thread
Clinical Infectious Diseases
Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial - Kuut et al.
The authors conducted a randomized trial of cognitive behavioral therapy in 114 Long Covid patients. They report: “among patients, who were mainly non-hospitalized and self-referred, CBT was effective in reducing fatigue.”
Article | Thread
..................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research
ME/CFS research
Journal of Translational Medicine
Proteomics and cytokine analyses distinguish ME/CFS cases from controls - Giloteaux, Hanson et al.
The researchers analysed the cytokine content of "extracellular vesicles (EVs) from frozen plasma samples from a cohort of ME/CFS cases and controls with prior published plasma cytokine and plasma proteomics data."
The abstract concludes: "These findings add to the substantial number of objective differences in biomolecules that have been identified in individuals with ME/CFS. The observed correlations of proteins important in immune responses and hemostasis with clinical data further implicates a disturbance of these functions in ME/CFS."
Paper | Thread
International Journal of Molecular Sciences
Detection of Elevated Level of Tetrahydrobiopterin in Serum Samples of ME/CFS Patients with Orthostatic Intolerance: A Pilot Study - Gottschalk et al.
Tetrahydrobiopterin (BH4) expression in the serum of a 32 ME/CFS patients was found to be significantly high compared to matched controls, and "might be associated with the oxidative stress response."
Paper | Thread
Fatigue: Biomedicine, Health & Behavior
Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome - Jones et al.
The authors argue that measures used in many NHS ME/CFS services capture patients’ experiences only moderately well. There are activities that patients value that are not captured by these measures.
Article | Thread
British Medical Bulletin
Whole-body cryotherapy as a treatment for chronic medical conditions? - Tabisz et al.
The research group of Pawel Zalewski explores whole-body cryotherapy, a controlled exposure of the whole body to cold to gain health benefits. They think it might serve as adjuvant therapy in multi-systemic disorders, including ME/CFS.
Article | Thread
Frontiers in Psychiatry
Efficacy of mindfulness- and acceptance-based cognitive-behavioral therapies for bodily distress in adults: a meta-analysis - Bermpohl et al.
The authors found 12 randomized trials that tested mindfulness- and acceptance-based cognitive-behavioral therapies for bodily distress, including 2 on chronic fatigue syndrome.
Article | Thread
Long Covid research
Open Forum Infectious Diseases
Systematic review of the prevalence of Long Covid — Woodrow et al.
“The review found that Long Covid presents a significant burden of functional disability, symptoms and pathology, with a pooled estimate of 34.5% of people not returning to full health/fitness after at least 12 weeks, and estimates of the most common symptoms/pathology including lung pathology (38.9%), fatigue (34.5%), breathing problems (14.9%), sleep problems (13.2%) and tingling or itching (11.3%). The paucity of long-term longitudinal studies following individuals’ disease progression means it is difficult to comment on which symptoms are most persistent over time.”
Article | Thread
Journal of the Royal Society of Medicine
Socioeconomic inequalities of Long COVID: a retrospective population-based cohort study in the United Kingdom — Sharmin Shabnam et al.
“We conducted a retrospective population-based cohort study using data from the ONS COVID-19 Infection Survey between 26 April 2020 and 31 January 2022. This is the largest nationally representative survey of COVID-19 in the UK with longitudinal data on occupation, COVID-19 exposure and Long COVID.”
“Nearly 10% (n = 19,315) of participants reported having Long COVID.”
Article | Thread
Brain : a journal of neurology
Neurologic sequelae of COVID-19 are determined by immunologic imprinting from previous coronaviruses — Spatola M et al.
“Overall, these findings point to a pathogenic role for compromised anti-SARS-CoV-2 responses in the CSF, likely resulting in incomplete virus clearance from the brain and persistent neuroinflammation, in the development of post-acute neurologic complications of SARS-CoV-2 infection.”
Article | Thread
Lancet: eBioMedicine
Post COVID-19 condition after delta infection and omicron reinfection in children and adolescents — Nina Urke Ertesvåg et al.
“The association between antibody titres and long-term symptoms previously described in adults can in this study be extended to children. Hence, an immune dysfunction may also be involved in maintaining symptoms in children as observed in adolescents after other viral infections.”
Article | Thread
Preprint: Research Square
Long-term symptoms after SARS-CoV-2 infection in a cohort of hospital employees: duration and predictive factors — Rosalie Gruber et al.
“Our main finding is that a low initial Ct value representing a high initial viral load is a predictor for prolonged COVID-19 course over 90 days. Other identified predictive factors for long-term courses of COVID-19 were a definitely nosocomial SARS-CoV-2 transmission and the presence of breathlessness, anosmia or ageusia within the first 10 days.”
Article | Thread
Clinical Infectious Diseases
Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial - Kuut et al.
The authors conducted a randomized trial of cognitive behavioral therapy in 114 Long Covid patients. They report: “among patients, who were mainly non-hospitalized and self-referred, CBT was effective in reducing fatigue.”
Article | Thread
..................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 15th May 2023
News, advocacy and articles
Germany
The German Institute for Quality and Efficiency in Health Care (IQWiG) has published its report on ME/CFS. The final version has increased the prevalence estimates and toned down statements supportive of graded exercise and CBT.
Press release | Report | Thread
Germany
The german Fatigue - S3 guideline has been updated, taking into account the NICE guidelines.
Article | Thread
Scotland ME/CFS Services in Scotland: Findings from an analysis of surveys issued to NHS Boards in Autumn 2022
"This report analyses survey responses from ten NHS Health Boards in Scotland to understand delivery of ME/CFS services, implementation of the updated ME/CFS NICE guidelines, barriers and opportunities to implementing the guidelines, and options for future ME/CFS service development."
Report | Thread
Millions Missing Press Conference Two of the speakers from this May 12 event have posted transcripts of their speeches.
Transcript from Morgan Stephens | Thread
Transcript from Brooke Keaton | Thread
Psychology Today COVID Long Haulers Protest in DC: "Pandemics Are Chronic"
Good article by Ryan Prior about the May 12th Millions Missing demonstration in Washington, DC.
Article | Thread
The Blue Sunday Tea party for ME on 14th May has raised over £30,000 for ME charities.
Website | Thread
A new consensus
ME/CFS skeptic analyses the new treatment evidence reviews and guidelines on ME/CFS that have been published over the past 5 years. They form a new consensus, but appear to be a diplomatic consensus based on expert opinion rather than a rigorous assessment of the current evidence.
Article | Thread
The Times Research into long Covid is crucial to get people working again
Excellent article by Sean O´Neill who warns against research funding for post viral illness drying up when more is needed. "This is a short-sighted approach, just at the time when conditions such as ME and long Covid desperately need innovation, courage and long-term thinking".
Article l Thread
Solve M.E. is calling for a new NIH Office for Infection-Associated Chronic Illness Research (IACIR) to manage "research and development efforts into infection-associated chronic illnesses within the NIH."
Article | Thread
Psychology Today A Case Definition for Long COVID - by Vernita Perkins, PhD and Leonard A. Jason, PhD
"...there has been considerable work in the ME/CFS area involving defining classification systems, operationalising methods, and developing instruments with proper thresholds, reliability, and validity. Insights from ME/CFS research could help in the development of the Long COVID case definition..."
Article l Thread
Australia ‘The Lucky Country’ Let Me Down: Australia’s Broken Disability Support System
Natalia Hodgins describes the years of struggle to get her ME/CFS diagnosis and then to get NDIS disablity benefits.
Article | Thread
Unrest This award winning documentary about ME from 2017 is now freely available on YouTube with subtitles in 28 languages.
Documentary l Thread
National Geographic An overdose drug shows promise for long COVID patients
An article about Low Dose Naltrexone (LDN) as a possible treatment approach. Dr. David Kaufman says: "I have a feeling we've only scratched the surface of what this drug can do". Neuroscientist Jarred Younger says the LDN, compared with other anti-inflammatories, can enter the brain in large enough quantities to have an effect. The article also mentions the lack of randomised controlled trials, but that a clinical trial on LDN and Long COVID is underway at the University of British Columbia.
Article l Thread
Medpage Today Are We Ready for the Long COVID Long-Haul?
Traci Kurtzer, MD and Long Covid sufferer on the overwhelming consequences of long term disability following the pandemic.
Article l Thread
TCW How long before the misery of ME is taken seriously?
Sophie Palmer has written an article about the history of medical dismissal of ME.
Article l Thread
Tempi Stiftung
Christoph Ströck board member at TEMPI-Foundation tweeted: "I believe NOW is the time to lobby and advocate for higher research spending for #MECFS at Congress and @NIH. To this end, I want to invest 100k USD - for anyone who comes up with a good idea on how to make the most of it, please reach out to @mstroeck at TEMPI-Stiftung."
Tweet | Thread
The Metrodora Clinic, a patient facility in Salt Lake City, Utah that advertises "advanced care through collaborative medicine", is now open and taking patients.
Website | Thread
The UK Press Association has published an article with misinformation about ME/CFS that is being picked up by several media outlets in the UK and Ireland.
Article | Thread
................
Coming events
Solve M.E. Webinar: Stem Cell Therapy As a Potential Treatment for Long Covid
Thursday, May 25, 10 am Pacific / 1 pm Eastern
Guest speaker Donna Change from Hope Biosciences Research Foundation (HBRF) will talk about research into mesenchymal cell therapy.
Announcement | Thread
.................
Research news
Germany
aerzteblatt.de has published an article on ME/CFS research in Germany and the recent conference on ME/CFS research in Berlin on 11 and 12 may.
Article | Thread
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
................
ME/CFS research
Mitochondrion
Mitochondrial and metabolic features of salugenesis and the healing cycle - Robert Naviaux
In this long review article Naviaux uses the term salugenesis for the healing cycle following pathogenesis. Key points include the cell danger response; "programmatic changes in mitochondrial function needed for local and organelle-to-organism signaling"; and "The rise and fall of extracellular ATP (eATP) after stress or injury." Naviaux attributes the rise in chronic disease, including ME/CFS, to "impaired salugenesis, incomplete healing, pollution, and ecosystem changes caused in part by anthropogenic factors."
Article | Thread
Research Square (preprint)
Uplifts and hassles are related to worsening in chronic fatigue syndrome A prospective study - Friedberg et al.
"Individuals with worsening as compared to improving illness in CFS show significantly different six-month trajectories for weekly hassles and a deficit in uplifts."
Article | Thread
Long Covid research
The Journal of Pediatrics
Long COVID in Children and Youth After Infection or Reinfection with the Omicron Variant: A Prospective Observational Study — Snehal M. Pinto Pereira et al.
“In our study we investigated long COVID in CYP first infected or reinfected with SARSCoV-2 during the period when Omicron was dominant, with follow-up over 6-months and to examine this according to age; 12.1% of CYP infected for the first time, 16.1% of those reinfected and 4.8% who always tested negative (by PCR or self-report) met the research definition of long COVID at both 3- and 6-months.”
Article | Thread
...................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and articles
Germany
The German Institute for Quality and Efficiency in Health Care (IQWiG) has published its report on ME/CFS. The final version has increased the prevalence estimates and toned down statements supportive of graded exercise and CBT.
Press release | Report | Thread
Germany
The german Fatigue - S3 guideline has been updated, taking into account the NICE guidelines.
Article | Thread
Scotland ME/CFS Services in Scotland: Findings from an analysis of surveys issued to NHS Boards in Autumn 2022
"This report analyses survey responses from ten NHS Health Boards in Scotland to understand delivery of ME/CFS services, implementation of the updated ME/CFS NICE guidelines, barriers and opportunities to implementing the guidelines, and options for future ME/CFS service development."
Report | Thread
Millions Missing Press Conference Two of the speakers from this May 12 event have posted transcripts of their speeches.
Transcript from Morgan Stephens | Thread
Transcript from Brooke Keaton | Thread
Psychology Today COVID Long Haulers Protest in DC: "Pandemics Are Chronic"
Good article by Ryan Prior about the May 12th Millions Missing demonstration in Washington, DC.
Article | Thread
The Blue Sunday Tea party for ME on 14th May has raised over £30,000 for ME charities.
Website | Thread
A new consensus
ME/CFS skeptic analyses the new treatment evidence reviews and guidelines on ME/CFS that have been published over the past 5 years. They form a new consensus, but appear to be a diplomatic consensus based on expert opinion rather than a rigorous assessment of the current evidence.
Article | Thread
The Times Research into long Covid is crucial to get people working again
Excellent article by Sean O´Neill who warns against research funding for post viral illness drying up when more is needed. "This is a short-sighted approach, just at the time when conditions such as ME and long Covid desperately need innovation, courage and long-term thinking".
Article l Thread
Solve M.E. is calling for a new NIH Office for Infection-Associated Chronic Illness Research (IACIR) to manage "research and development efforts into infection-associated chronic illnesses within the NIH."
Article | Thread
Psychology Today A Case Definition for Long COVID - by Vernita Perkins, PhD and Leonard A. Jason, PhD
"...there has been considerable work in the ME/CFS area involving defining classification systems, operationalising methods, and developing instruments with proper thresholds, reliability, and validity. Insights from ME/CFS research could help in the development of the Long COVID case definition..."
Article l Thread
Australia ‘The Lucky Country’ Let Me Down: Australia’s Broken Disability Support System
Natalia Hodgins describes the years of struggle to get her ME/CFS diagnosis and then to get NDIS disablity benefits.
Article | Thread
Unrest This award winning documentary about ME from 2017 is now freely available on YouTube with subtitles in 28 languages.
Documentary l Thread
National Geographic An overdose drug shows promise for long COVID patients
An article about Low Dose Naltrexone (LDN) as a possible treatment approach. Dr. David Kaufman says: "I have a feeling we've only scratched the surface of what this drug can do". Neuroscientist Jarred Younger says the LDN, compared with other anti-inflammatories, can enter the brain in large enough quantities to have an effect. The article also mentions the lack of randomised controlled trials, but that a clinical trial on LDN and Long COVID is underway at the University of British Columbia.
Article l Thread
Medpage Today Are We Ready for the Long COVID Long-Haul?
Traci Kurtzer, MD and Long Covid sufferer on the overwhelming consequences of long term disability following the pandemic.
Article l Thread
TCW How long before the misery of ME is taken seriously?
Sophie Palmer has written an article about the history of medical dismissal of ME.
Article l Thread
Tempi Stiftung
Christoph Ströck board member at TEMPI-Foundation tweeted: "I believe NOW is the time to lobby and advocate for higher research spending for #MECFS at Congress and @NIH. To this end, I want to invest 100k USD - for anyone who comes up with a good idea on how to make the most of it, please reach out to @mstroeck at TEMPI-Stiftung."
Tweet | Thread
The Metrodora Clinic, a patient facility in Salt Lake City, Utah that advertises "advanced care through collaborative medicine", is now open and taking patients.
Website | Thread
The UK Press Association has published an article with misinformation about ME/CFS that is being picked up by several media outlets in the UK and Ireland.
Article | Thread
................
Coming events
Solve M.E. Webinar: Stem Cell Therapy As a Potential Treatment for Long Covid
Thursday, May 25, 10 am Pacific / 1 pm Eastern
Guest speaker Donna Change from Hope Biosciences Research Foundation (HBRF) will talk about research into mesenchymal cell therapy.
Announcement | Thread
.................
Research news
Germany
aerzteblatt.de has published an article on ME/CFS research in Germany and the recent conference on ME/CFS research in Berlin on 11 and 12 may.
Article | Thread
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
................
ME/CFS research
Mitochondrion
Mitochondrial and metabolic features of salugenesis and the healing cycle - Robert Naviaux
In this long review article Naviaux uses the term salugenesis for the healing cycle following pathogenesis. Key points include the cell danger response; "programmatic changes in mitochondrial function needed for local and organelle-to-organism signaling"; and "The rise and fall of extracellular ATP (eATP) after stress or injury." Naviaux attributes the rise in chronic disease, including ME/CFS, to "impaired salugenesis, incomplete healing, pollution, and ecosystem changes caused in part by anthropogenic factors."
Article | Thread
Research Square (preprint)
Uplifts and hassles are related to worsening in chronic fatigue syndrome A prospective study - Friedberg et al.
"Individuals with worsening as compared to improving illness in CFS show significantly different six-month trajectories for weekly hassles and a deficit in uplifts."
Article | Thread
Long Covid research
The Journal of Pediatrics
Long COVID in Children and Youth After Infection or Reinfection with the Omicron Variant: A Prospective Observational Study — Snehal M. Pinto Pereira et al.
“In our study we investigated long COVID in CYP first infected or reinfected with SARSCoV-2 during the period when Omicron was dominant, with follow-up over 6-months and to examine this according to age; 12.1% of CYP infected for the first time, 16.1% of those reinfected and 4.8% who always tested negative (by PCR or self-report) met the research definition of long COVID at both 3- and 6-months.”
Article | Thread
...................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 22nd May 2023
Part 1 of 2
News, advocacy and articles
UK ME Association survey: Count ME In
"We are asking people to complete a short survey about their health experiences and the support they have received from the NHS and social care services."
Survey | Thread
UK ME Association Updated booklet: Pacing
"PACING: Activity and Energy Management for people with ME/CFS and Long Covid"
"Dr Charles Shepherd and Sue Mayes, Chartered physiotherapist, have updated the existing booklet which explains how you can safely manage functional incapacity by using a management approach known as Pacing". 12 page pdf.
Article | Booklet | Thread
Walk for ME has a new website. "We started Walk for ME back in 2013 to raise awareness & funds for biomedical research into M.E/CFS. Since then it’s grown beyond anything we could imagine, thanks to all the amazing friends & family members doing sponsored walks, swims, runs and rides across the world on behalf of people with M.E." Over £190,000 raised so far.
Website | Thread
The Hill Why is the medical community still ignoring long COVID?
Opinion piece by ME sufferer and assistant professor studying health inequities V. Jo Hsu.
"If long COVID researchers looked, they would find a strong foundation of previous studies on which to build. The NIH should coordinate long COVID studies so that researchers can share knowledge, including existing research on PEM and ME/CFS and what we know about some patients’ unusual — and highly damaging — responses to exertion."
Opinion piece l Thread
The Washington Post An exercise trial for long covid is being criticized by some patients
About the strong criticism from both patients and clinicians to the planned exercise trial for long Covid which is part the the RECOVER initiative. Quotes among others Ben HsuBorger from #MEAction who says this could harm a lot of people. David Systrom says some preliminary research shows inflammation in ME/CFS patients can get worse with exercise but "If we get patients properly medicated and feeling better, we have found that they are able to gradually and carefully advance their exercise programs without precipitating crashing. That distinction is hugely important".
Article l Thread
The Boston Globe Learning to treat long COVID could help those struggling with Chronic Fatigue Syndrome too
"Some experts say the current crisis of long COVID is related to our government's neglect of similar post-acute infection chronic illnesses like ME/Chronic Fatigue Syndrome in decades past". Dr. Lucinda Bateman says: "Post-COVID conditions are going to force everyone to embrace at least long COVID, and then eventually I'm hoping the biases about ME/CFS will gradually diminish".
Article l Thread
Trial By Error by David Tuller Psychologist Brian Hughes Discusses His New Book, “A Conceptual History of Psychology”
"Brian Hughes, a psychology professor at University of Galway, recently published a new book - "A Conceptual History of Psychology." Here's our conversation about the book and related stuff - like being charged with engaging in "mind-body dualism.""
Article with interview | Thread
..........
Research news and commentary
New Zealand ANZMES research grants & scholarships 2023 application round is open 31 May - 31 July. There are four $5000 scholarships for research students and two $25000 grants for laboratory research.
Details | Thread
ME Research UK have published their 2022 Annual Report. It includes updates on research projects they have funded.
Thread with link to report.
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
Solve M.E. Webinar Stem Cell Therapy As a Potential Treatment for Long Covid - was held on Thursday, May 25. Guest speaker Donna Change from Hope Biosciences Research Foundation (HBRF) talked about research into mesenchymal cell therapy.
Video now available. Duration 1 hour.
Video | Thread
University of Aberdeen
Major new study aims to increase understanding of fatigue
Patients with Long Covid, melanoma, heart failure and non-fatigued controls.
"This project will investigate sensory technologies to objectively, accurately and unobtrusively measure fatiguability, as an indicator of fatigue. These measurements will be correlated to sensed data (activity levels, sleep, heart rate, and others) and individuals' self-reports."
Article | Thread
The Netherlands
ZonMw, The Dutch organisation for health research and development, has told the The Dutch ME/CFS Association that their WOO [freedom of information] request is extensive and that more time is needed to respond. ZonMw will use an external law firm to consult with the ME/CFS Association about prioritizing the handling of the request.
Article | Thread
Nina E. Steinkopf, patient advocate, has written an opinion piece for the Norwegian University of Science and Technology's newspaper Universitetsavisa about a study on CBT as CFS treatment where one of the researchers failed to inform of financial conflicts of interest. The opinion piece has been translated into English.
Opinion piece l Thread
Trial by Error by David Tuller Dutch CBT Study for Long Covid Proves that Unblinded Studies with Subjective Outcomes Generate Positive Reports
A critical walkthrough of a recent study with several weaknesses on CBT as treatment for severe fatigue following COVID-19
Article l Thread
.........
Continued in the next post with Part 2 - Research
Part 1 of 2
News, advocacy and articles
UK ME Association survey: Count ME In
"We are asking people to complete a short survey about their health experiences and the support they have received from the NHS and social care services."
Survey | Thread
UK ME Association Updated booklet: Pacing
"PACING: Activity and Energy Management for people with ME/CFS and Long Covid"
"Dr Charles Shepherd and Sue Mayes, Chartered physiotherapist, have updated the existing booklet which explains how you can safely manage functional incapacity by using a management approach known as Pacing". 12 page pdf.
Article | Booklet | Thread
Walk for ME has a new website. "We started Walk for ME back in 2013 to raise awareness & funds for biomedical research into M.E/CFS. Since then it’s grown beyond anything we could imagine, thanks to all the amazing friends & family members doing sponsored walks, swims, runs and rides across the world on behalf of people with M.E." Over £190,000 raised so far.
Website | Thread
The Hill Why is the medical community still ignoring long COVID?
Opinion piece by ME sufferer and assistant professor studying health inequities V. Jo Hsu.
"If long COVID researchers looked, they would find a strong foundation of previous studies on which to build. The NIH should coordinate long COVID studies so that researchers can share knowledge, including existing research on PEM and ME/CFS and what we know about some patients’ unusual — and highly damaging — responses to exertion."
Opinion piece l Thread
The Washington Post An exercise trial for long covid is being criticized by some patients
About the strong criticism from both patients and clinicians to the planned exercise trial for long Covid which is part the the RECOVER initiative. Quotes among others Ben HsuBorger from #MEAction who says this could harm a lot of people. David Systrom says some preliminary research shows inflammation in ME/CFS patients can get worse with exercise but "If we get patients properly medicated and feeling better, we have found that they are able to gradually and carefully advance their exercise programs without precipitating crashing. That distinction is hugely important".
Article l Thread
The Boston Globe Learning to treat long COVID could help those struggling with Chronic Fatigue Syndrome too
"Some experts say the current crisis of long COVID is related to our government's neglect of similar post-acute infection chronic illnesses like ME/Chronic Fatigue Syndrome in decades past". Dr. Lucinda Bateman says: "Post-COVID conditions are going to force everyone to embrace at least long COVID, and then eventually I'm hoping the biases about ME/CFS will gradually diminish".
Article l Thread
Trial By Error by David Tuller Psychologist Brian Hughes Discusses His New Book, “A Conceptual History of Psychology”
"Brian Hughes, a psychology professor at University of Galway, recently published a new book - "A Conceptual History of Psychology." Here's our conversation about the book and related stuff - like being charged with engaging in "mind-body dualism.""
Article with interview | Thread
..........
Research news and commentary
New Zealand ANZMES research grants & scholarships 2023 application round is open 31 May - 31 July. There are four $5000 scholarships for research students and two $25000 grants for laboratory research.
Details | Thread
ME Research UK have published their 2022 Annual Report. It includes updates on research projects they have funded.
Thread with link to report.
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
Solve M.E. Webinar Stem Cell Therapy As a Potential Treatment for Long Covid - was held on Thursday, May 25. Guest speaker Donna Change from Hope Biosciences Research Foundation (HBRF) talked about research into mesenchymal cell therapy.
Video now available. Duration 1 hour.
Video | Thread
University of Aberdeen
Major new study aims to increase understanding of fatigue
Patients with Long Covid, melanoma, heart failure and non-fatigued controls.
"This project will investigate sensory technologies to objectively, accurately and unobtrusively measure fatiguability, as an indicator of fatigue. These measurements will be correlated to sensed data (activity levels, sleep, heart rate, and others) and individuals' self-reports."
Article | Thread
The Netherlands
ZonMw, The Dutch organisation for health research and development, has told the The Dutch ME/CFS Association that their WOO [freedom of information] request is extensive and that more time is needed to respond. ZonMw will use an external law firm to consult with the ME/CFS Association about prioritizing the handling of the request.
Article | Thread
Nina E. Steinkopf, patient advocate, has written an opinion piece for the Norwegian University of Science and Technology's newspaper Universitetsavisa about a study on CBT as CFS treatment where one of the researchers failed to inform of financial conflicts of interest. The opinion piece has been translated into English.
Opinion piece l Thread
Trial by Error by David Tuller Dutch CBT Study for Long Covid Proves that Unblinded Studies with Subjective Outcomes Generate Positive Reports
A critical walkthrough of a recent study with several weaknesses on CBT as treatment for severe fatigue following COVID-19
Article l Thread
.........
Continued in the next post with Part 2 - Research
Last edited by a moderator:
Week beginning 22nd May 2023
Part 2 of 2
Research
ME/CFS research
IBRO Neuroscience Reports
Orthostatic chronotropic incompetence in patients with ME/CFS - van Campen et al.
"During tilt testing we found that in 134/362 (37%) patients with ME/CFS without POTS or hypotension, the heart rate increase was below the lower limit of the 95% prediction interval of the heart rate increase of controls, indicative of orthostatic chronotropic incompetence. [...] confirming another abnormality in the circulatory response to upright posture in ME/CFS."
Paper | Thread
MedRxiv preprint
Investigating antibody reactivity to the intestinal microbiome in severe ME/CFS - Carding et al.
"Secretory IgA and serum IgG levels and reactivity to intestinal microbes were assessed in five pairs of severe ME/CFS patients and matched same-household healthy controls. [...] We uncovered evidence for immune dysfunction in severe ME/CFS patients that was characterised by reduced capacity and reactivity of serum IgG to stool microbes, irrespective of their source."
Preprint | Thread
MedRxiv preprint
Hypothalamus volumes in adolescent ME/CFS: Impact of self-reported fatigue and illness duration - Byrne et al.
25 ME/CFS and 23 controls studied using MRI imaging. No significant between group differences were found in whole hypothalamus volumes.
In the ME/CFS group: "preliminary evidence was identified to suggest greater fatigue and longer illness duration were associated with greater right anterior superior and superior tubular volumes, respectively." Regions affected are "involved in the neuroendocrine response to stress, suggesting involvement in ME/CFS pathophysiology."
Preprint | Thread
Preprint
Autoantibodies to Selenoprotein P in Patients with Chronic Fatigue Syndrome Suggest Selenium Transport Impairment and Acquired Resistance to Thyroid Hormone - Qian Sun et al.
Selenium status in CFS (n=167) was compared to that of healthy controls (n=545). Small numbers with fibromyalgia and post-COVID were also included. "We conclude that a considerable subset of CFS patients express SELENOP-aAb that disturb Se transport and cause low GPx3 and DIO activities. Hereby, TH deiodination decreases as an acquired condition that is not readily reflected by TSH or T4 in blood."
Preprint | Thread
BMC Medicine
Biomarkers for ME/CFS: a systematic review - Maksoud et al
101 papers included. "Reproducibility of findings between the included publications were limited, however, several studies validated the involvement of immune dysfunction in the pathology of ME/CFS and the use of lymphocytes as a model to investigate the pathomechanism of illness."
Article | Thread
Chronic Illness
Do labels matter? Implications of ongoing symptomatic chronic illnesses labeled as conventional diagnoses vs. functional somatic syndromes - Smith et al.
The authors compared patients with conventional diagnosis (CD) and functional somatic syndrome (FSS). FSS participants reported lower illness coherence and greater illness identity than CD participants.
Article | Thread
Sleep
Beyond the Symptom: The Biology of Fatigue - Raizen et al.
The authors summarize a workshop titled “Beyond the Symptom: The Biology of Fatigue” that was held virtually September 27-28, 2021. It was jointly organized by the Sleep Research Society and the Neurobiology of Fatigue Working Group of the NIH Blueprint Neuroscience Research Program.
Article | Thread
Long Covid research
JAMA
Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection — Tanayott Thaweethai et al.
“Symptoms contributing to PASC score included postexertional malaise, fatigue, brain fog, dizziness, gastrointestinal symptoms, palpitations, changes in sexual desire or capacity, loss of or change in smell or taste, thirst, chronic cough, chest pain, and abnormal movements. Among 2231 participants first infected on or after December 1, 2021, and enrolled within 30 days of infection, 224 (10% [95% CI, 8.8%-11%]) were PASC positive at 6 months.”
Article | Thread
The Journal of Infectious Diseases
Reduced exercise capacity, chronotropic incompetence, and early systemic inflammation in cardiopulmonary phenotype Long COVID — Durstenfeld et al.
“To our knowledge, our study is the first to report evidence of EBV reactivation among those with chronotropic incompetence in PASC, a hypothesis-generating finding that needs replication.”
Article | Thread
Proceedings of the National Academy of Sciences
Brain imaging and neuropsychological assessment of individuals recovered from a mild to moderate SARS-CoV-2 infection — Petersen et al.
“Collectively, our findings suggest that subtle changes in white matter extracellular water content last beyond the acute infection with SARS-CoV-2. However, in our sample, a mild to moderate SARS-CoV-2 infection was not associated with neuropsychological deficits, significant changes in cortical structure, or vascular lesions several months after recovery.”
Article | Thread
Frontiers in Immunology
Maintained imbalance of triglycerides, apolipoproteins, energy metabolites and cytokines in long-term COVID-19 syndrome patients — Berezhnoy et al.
“Total blood triglycerides and the Cory cycle metabolites (lactate and pyruvate) were significantly higher, lipoproteins (apolipoproteins Apo-A1 and A2) were drastically lower in LTCS patients compared with healthy controls.”
Article | Thread
International Journal of Environmental Research and Public Health
Detecting Orthostatic Intolerance in Long COVID in a Clinic Setting — Isaac et al.
“This retrospective study found evidence of OI patients with LC, with impact on daily functioning. The [Nasa Lean Test] can be used to detect OI in a clinic setting. We would recommend using this test for all patients with LC and not just patients with classical OI symptoms, due to the high prevalence of OI in LC.”
Article | Thread
Nature Scientific Reports
Parasympathetic autonomic dysfunction is more often evidenced than sympathetic autonomic dysfunction in fluctuating and polymorphic symptoms of — Zanin et al.
“Sixteen patients (median age 37 years [31–43 years], 15 women) were included in this study and referred 14.5 months (median) [12.0–16.5 months] after initial infection.”
“Six patients (37.5%) had one or several abnormal test results, affecting the parasympathetic cardiac function in five of them (31%). Mean Valsalva score was significantly lower in patients than in controls.”
Article | Thread
Preprint: Research Square
Persistent endothelial dysfunction in post-COVID-19 syndrome and its associations with symptom severity and chronic inflammation — Timon Kuchler et al.
Retinal vessel analysis. “Our results demonstrate that prolonged endothelial dysfunction is a hallmark of PCS, and impairments of the microcirculation seem to explain ongoing symptoms in patients.”
Article | Thread
........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research
ME/CFS research
IBRO Neuroscience Reports
Orthostatic chronotropic incompetence in patients with ME/CFS - van Campen et al.
"During tilt testing we found that in 134/362 (37%) patients with ME/CFS without POTS or hypotension, the heart rate increase was below the lower limit of the 95% prediction interval of the heart rate increase of controls, indicative of orthostatic chronotropic incompetence. [...] confirming another abnormality in the circulatory response to upright posture in ME/CFS."
Paper | Thread
MedRxiv preprint
Investigating antibody reactivity to the intestinal microbiome in severe ME/CFS - Carding et al.
"Secretory IgA and serum IgG levels and reactivity to intestinal microbes were assessed in five pairs of severe ME/CFS patients and matched same-household healthy controls. [...] We uncovered evidence for immune dysfunction in severe ME/CFS patients that was characterised by reduced capacity and reactivity of serum IgG to stool microbes, irrespective of their source."
Preprint | Thread
MedRxiv preprint
Hypothalamus volumes in adolescent ME/CFS: Impact of self-reported fatigue and illness duration - Byrne et al.
25 ME/CFS and 23 controls studied using MRI imaging. No significant between group differences were found in whole hypothalamus volumes.
In the ME/CFS group: "preliminary evidence was identified to suggest greater fatigue and longer illness duration were associated with greater right anterior superior and superior tubular volumes, respectively." Regions affected are "involved in the neuroendocrine response to stress, suggesting involvement in ME/CFS pathophysiology."
Preprint | Thread
Preprint
Autoantibodies to Selenoprotein P in Patients with Chronic Fatigue Syndrome Suggest Selenium Transport Impairment and Acquired Resistance to Thyroid Hormone - Qian Sun et al.
Selenium status in CFS (n=167) was compared to that of healthy controls (n=545). Small numbers with fibromyalgia and post-COVID were also included. "We conclude that a considerable subset of CFS patients express SELENOP-aAb that disturb Se transport and cause low GPx3 and DIO activities. Hereby, TH deiodination decreases as an acquired condition that is not readily reflected by TSH or T4 in blood."
Preprint | Thread
BMC Medicine
Biomarkers for ME/CFS: a systematic review - Maksoud et al
101 papers included. "Reproducibility of findings between the included publications were limited, however, several studies validated the involvement of immune dysfunction in the pathology of ME/CFS and the use of lymphocytes as a model to investigate the pathomechanism of illness."
Article | Thread
Chronic Illness
Do labels matter? Implications of ongoing symptomatic chronic illnesses labeled as conventional diagnoses vs. functional somatic syndromes - Smith et al.
The authors compared patients with conventional diagnosis (CD) and functional somatic syndrome (FSS). FSS participants reported lower illness coherence and greater illness identity than CD participants.
Article | Thread
Sleep
Beyond the Symptom: The Biology of Fatigue - Raizen et al.
The authors summarize a workshop titled “Beyond the Symptom: The Biology of Fatigue” that was held virtually September 27-28, 2021. It was jointly organized by the Sleep Research Society and the Neurobiology of Fatigue Working Group of the NIH Blueprint Neuroscience Research Program.
Article | Thread
Long Covid research
JAMA
Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection — Tanayott Thaweethai et al.
“Symptoms contributing to PASC score included postexertional malaise, fatigue, brain fog, dizziness, gastrointestinal symptoms, palpitations, changes in sexual desire or capacity, loss of or change in smell or taste, thirst, chronic cough, chest pain, and abnormal movements. Among 2231 participants first infected on or after December 1, 2021, and enrolled within 30 days of infection, 224 (10% [95% CI, 8.8%-11%]) were PASC positive at 6 months.”
Article | Thread
The Journal of Infectious Diseases
Reduced exercise capacity, chronotropic incompetence, and early systemic inflammation in cardiopulmonary phenotype Long COVID — Durstenfeld et al.
“To our knowledge, our study is the first to report evidence of EBV reactivation among those with chronotropic incompetence in PASC, a hypothesis-generating finding that needs replication.”
Article | Thread
Proceedings of the National Academy of Sciences
Brain imaging and neuropsychological assessment of individuals recovered from a mild to moderate SARS-CoV-2 infection — Petersen et al.
“Collectively, our findings suggest that subtle changes in white matter extracellular water content last beyond the acute infection with SARS-CoV-2. However, in our sample, a mild to moderate SARS-CoV-2 infection was not associated with neuropsychological deficits, significant changes in cortical structure, or vascular lesions several months after recovery.”
Article | Thread
Frontiers in Immunology
Maintained imbalance of triglycerides, apolipoproteins, energy metabolites and cytokines in long-term COVID-19 syndrome patients — Berezhnoy et al.
“Total blood triglycerides and the Cory cycle metabolites (lactate and pyruvate) were significantly higher, lipoproteins (apolipoproteins Apo-A1 and A2) were drastically lower in LTCS patients compared with healthy controls.”
Article | Thread
International Journal of Environmental Research and Public Health
Detecting Orthostatic Intolerance in Long COVID in a Clinic Setting — Isaac et al.
“This retrospective study found evidence of OI patients with LC, with impact on daily functioning. The [Nasa Lean Test] can be used to detect OI in a clinic setting. We would recommend using this test for all patients with LC and not just patients with classical OI symptoms, due to the high prevalence of OI in LC.”
Article | Thread
Nature Scientific Reports
Parasympathetic autonomic dysfunction is more often evidenced than sympathetic autonomic dysfunction in fluctuating and polymorphic symptoms of — Zanin et al.
“Sixteen patients (median age 37 years [31–43 years], 15 women) were included in this study and referred 14.5 months (median) [12.0–16.5 months] after initial infection.”
“Six patients (37.5%) had one or several abnormal test results, affecting the parasympathetic cardiac function in five of them (31%). Mean Valsalva score was significantly lower in patients than in controls.”
Article | Thread
Preprint: Research Square
Persistent endothelial dysfunction in post-COVID-19 syndrome and its associations with symptom severity and chronic inflammation — Timon Kuchler et al.
Retinal vessel analysis. “Our results demonstrate that prolonged endothelial dysfunction is a hallmark of PCS, and impairments of the microcirculation seem to explain ongoing symptoms in patients.”
Article | Thread
........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
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News in Brief - June 2023
News in Brief - June 2023