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News in Brief - December 2022
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Week beginning 28th November 2022
News, articles and advocacy
Australia 2022 Parliamentary inquiry into Long Covid and repeated covid infections
Over 350 submissions have been received and published. Some harrowing accounts of medical gaslighting from individual patients. Good summaries of lived experience from patient support groups, with data from questionnaires. Sensible recommendations from biomedical researchers, including a call for appropriate funding. Contrasting submissions from the newly established long COVID clinics, with treatments based on the biopsychosocial model.
Submissions | Thread
Lectures from a recent seminar organised by the Norwegian ME Association are available. Two of them in English: Expert Consensus Statements of the U.S. ME/CFS Clinician Coalition with Dr Lucinda Bateman (Bateman Horne Center) talks about guidelines from the U.S. ME/CFS Clinician Coalition; and Caroline Kingdon talks about the 2021 NICE ME/CFS Guidelines.
Lectures here Thread here
MEAction On World Aids Day (December 1) MEAction joined a protest at the White House to demand that the US Congress "Fund Pandemic Plans." There is an MEAction tool to send email to President Biden and Congress with the list of demands. Livestream of the protest was recorded (about 1 1/2 hours).
Article here Video here Thread here
Solve ME has announced a Lived Experience Taskforce whose members would "serve as leadership partners with Solve M.E." They are looking for ME/CFS or Long Covid patients as well as caregivers for these patients.
Article here Thread here
The Guardian A catalogue of losses: what chronic fatigue syndrome took away from my life
Author Mike Mariani has suffered from ME since 2012 and provides a well written account of coming to terms with living with the disease. The text is an excerpt from his book "What doesn't kill us makes us".
Article here Thread here
Think Global Health Long COVID May Catalyse New Treatments for Chronic Pain and Fatigue
On how the big numbers of Long Covid sufferers may lift areas in medicine that have been overlooked, including ME.
Article here Thread here
WHO Europe "Helping people is my passion, yet I can't do that anymore": how long COVID ended the career of a young paramedic
Former ambulance paramedic from the Netherlands, Roy, tells about a new life with long Covid including learning about pacing and dealing with PEM. "Like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) that we knew about before COVID, there is no easy explanation for it, which is very frustrating".
Article here Thread here
New York Times Will Exercising With a Cold Make You Sicker?
Mentions the risk of developing ME or Long Covid after a virus.
Article here Thread here
........................
Coming events
The next IACFS/ME Virtual Journal Club will be held on December 16 at 4 PM Eastern Time. The topic is Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Register here Thread here
........................
Research news
UK DecodeME More people in the UK with a diagnosis of ME/CFS are needed to complete the questionnaire part of this study. Some will be invited to give a saliva sample for genetic analysis - December spit kits for this will be sent out in January to avoid seasonal postal delays.
Details and sign up here Thread here
.........................
Research
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Vocabulary - Vasudevan et al
12 patients described their experience of key ME/CFS symptoms such as PEM and cognitive dysfunction. "Further comprehension of language utilized by patients may help rehabilitation clinicians working with patients avoid PEM due to unnecessary overexertion."
Archives of Physical Medicine and Rehabilitation | Thread
Meditative-based diaphragmatic breathing vs. vagus nerve stimulation in the treatment of fibromyalgia—A randomized controlled trial, Paccione et al.
2 week study with active and sham treatment groups of about 30 for each treatment found no significant between group differences in heart rate variability or pain for either treatment.
Frontiers in Neurology | Thread
Establishing a consensus on ME/CFS exclusionary illnesses - Jason et al.
“The final set of exclusionary conditions is divided into 14 categories with 53 specific examples.”
Fatigue: Biomedicine, Health & Behavior | Thread
Severe myalgic encephalomyelitis/chronic fatigue syndrome in children and young people: a British Paediatric Surveillance Unit study - Royston et al.
“285 cases were reported, of which of which 33 were severe, 4 probable severe and 55 possible severe. Estimated prevalence was 3.2 per million children (95% CI 2.2 to 4.5). “
Archives of Disease in Childhood | Thread
Long Covid Research
T3 Altered neutrophil proteomes in COVID19 patients 29-days post hospital admission are associated with delayed recovery: results from the PREDICT-COVID19 study — Long et al
"Neutrophil proteomics revealed that these cells may have an ongoing role in non-recovered patients, including profiles associated with increased potential for neutrophil activation and reduced migratory capacity, highlighting neutrophils as potential therapeutic targets in long COVID19."
Thorax | Thread
Data-driven identification of post-acute SARS-CoV-2 infection subphenotypes - Zhang et al
"Through machine learning analysis of over 137 symptoms and conditions, we identified four reproducible PASC subphenotypes, dominated by cardiac and renal; respiratory, sleep and anxiety; musculoskeletal and nervous system; and digestive and respiratory system sequelae."
Nature Medicine | Thread
Impact of pre-existing chronic viral infection and reactivation on the development of long COVID - Peluso et al
"We observed that LC symptoms such as fatigue and neurocognitive dysfunction at a median of 4 months following initial diagnosis were independently associated with serological evidence suggesting recent EBV reactivation (early antigen-D [EA-D] IgG positivity) or high nuclear antigen (EBNA) IgG levels, but not with ongoing EBV viremia."
J Clinical Investigation | Thread
........................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
Australia 2022 Parliamentary inquiry into Long Covid and repeated covid infections
Over 350 submissions have been received and published. Some harrowing accounts of medical gaslighting from individual patients. Good summaries of lived experience from patient support groups, with data from questionnaires. Sensible recommendations from biomedical researchers, including a call for appropriate funding. Contrasting submissions from the newly established long COVID clinics, with treatments based on the biopsychosocial model.
Submissions | Thread
Lectures from a recent seminar organised by the Norwegian ME Association are available. Two of them in English: Expert Consensus Statements of the U.S. ME/CFS Clinician Coalition with Dr Lucinda Bateman (Bateman Horne Center) talks about guidelines from the U.S. ME/CFS Clinician Coalition; and Caroline Kingdon talks about the 2021 NICE ME/CFS Guidelines.
Lectures here Thread here
MEAction On World Aids Day (December 1) MEAction joined a protest at the White House to demand that the US Congress "Fund Pandemic Plans." There is an MEAction tool to send email to President Biden and Congress with the list of demands. Livestream of the protest was recorded (about 1 1/2 hours).
Article here Video here Thread here
Solve ME has announced a Lived Experience Taskforce whose members would "serve as leadership partners with Solve M.E." They are looking for ME/CFS or Long Covid patients as well as caregivers for these patients.
Article here Thread here
The Guardian A catalogue of losses: what chronic fatigue syndrome took away from my life
Author Mike Mariani has suffered from ME since 2012 and provides a well written account of coming to terms with living with the disease. The text is an excerpt from his book "What doesn't kill us makes us".
Article here Thread here
Think Global Health Long COVID May Catalyse New Treatments for Chronic Pain and Fatigue
On how the big numbers of Long Covid sufferers may lift areas in medicine that have been overlooked, including ME.
Article here Thread here
WHO Europe "Helping people is my passion, yet I can't do that anymore": how long COVID ended the career of a young paramedic
Former ambulance paramedic from the Netherlands, Roy, tells about a new life with long Covid including learning about pacing and dealing with PEM. "Like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) that we knew about before COVID, there is no easy explanation for it, which is very frustrating".
Article here Thread here
New York Times Will Exercising With a Cold Make You Sicker?
Mentions the risk of developing ME or Long Covid after a virus.
Article here Thread here
........................
Coming events
The next IACFS/ME Virtual Journal Club will be held on December 16 at 4 PM Eastern Time. The topic is Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Register here Thread here
........................
Research news
UK DecodeME More people in the UK with a diagnosis of ME/CFS are needed to complete the questionnaire part of this study. Some will be invited to give a saliva sample for genetic analysis - December spit kits for this will be sent out in January to avoid seasonal postal delays.
Details and sign up here Thread here
.........................
Research
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Vocabulary - Vasudevan et al
12 patients described their experience of key ME/CFS symptoms such as PEM and cognitive dysfunction. "Further comprehension of language utilized by patients may help rehabilitation clinicians working with patients avoid PEM due to unnecessary overexertion."
Archives of Physical Medicine and Rehabilitation | Thread
Meditative-based diaphragmatic breathing vs. vagus nerve stimulation in the treatment of fibromyalgia—A randomized controlled trial, Paccione et al.
2 week study with active and sham treatment groups of about 30 for each treatment found no significant between group differences in heart rate variability or pain for either treatment.
Frontiers in Neurology | Thread
Establishing a consensus on ME/CFS exclusionary illnesses - Jason et al.
“The final set of exclusionary conditions is divided into 14 categories with 53 specific examples.”
Fatigue: Biomedicine, Health & Behavior | Thread
Severe myalgic encephalomyelitis/chronic fatigue syndrome in children and young people: a British Paediatric Surveillance Unit study - Royston et al.
“285 cases were reported, of which of which 33 were severe, 4 probable severe and 55 possible severe. Estimated prevalence was 3.2 per million children (95% CI 2.2 to 4.5). “
Archives of Disease in Childhood | Thread
Long Covid Research
T3 Altered neutrophil proteomes in COVID19 patients 29-days post hospital admission are associated with delayed recovery: results from the PREDICT-COVID19 study — Long et al
"Neutrophil proteomics revealed that these cells may have an ongoing role in non-recovered patients, including profiles associated with increased potential for neutrophil activation and reduced migratory capacity, highlighting neutrophils as potential therapeutic targets in long COVID19."
Thorax | Thread
Data-driven identification of post-acute SARS-CoV-2 infection subphenotypes - Zhang et al
"Through machine learning analysis of over 137 symptoms and conditions, we identified four reproducible PASC subphenotypes, dominated by cardiac and renal; respiratory, sleep and anxiety; musculoskeletal and nervous system; and digestive and respiratory system sequelae."
Nature Medicine | Thread
Impact of pre-existing chronic viral infection and reactivation on the development of long COVID - Peluso et al
"We observed that LC symptoms such as fatigue and neurocognitive dysfunction at a median of 4 months following initial diagnosis were independently associated with serological evidence suggesting recent EBV reactivation (early antigen-D [EA-D] IgG positivity) or high nuclear antigen (EBNA) IgG levels, but not with ongoing EBV viremia."
J Clinical Investigation | Thread
........................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 5th December 2022
News, articles and advocacy
India The Supreme Court directs the Ministry of Health and Family Welfare to find ways to improve conditions for people with ME/CFS.
Article here Thread here
UK ME Research Collaborative (MERC) - Applications invited for Patient Advisory Group until end of Feb 2023
"Are you interested in joining a patient and carers group which plays an active role in promoting the voice and inclusion of people with ME/CFS in research activities? The Patient Advisory Group (PAG) to the UK M.E. Research Collaborative (MERC) is recruiting a number of new adult members, based in the UK"
MEA article here Application pack here Thread here
Sweden Journalist Agnes Arpi asks in Altinget if ME patients really are the ones who have to do the investigation of care provided to this patient group themselves. She refers to patient advocate and forum member Mitt Eremitage who has revealed a lack of ethical approval in research, staff with double roles and treatments involving risk of deterioration and which also excludes participation by the most severe patients.
Article here (in Swedish) Thread here
Norway A research director at the Norwegian Institute of Public Health has tried to influence a member of the National Committee for Medical and Health research Ethics (NEM) in favour of a controversial study on the alternative treatment Lightning Process before the committee was to asses it. David Tuller has written an article which includes a text from patient advocate Nina E. Steinkopf with further details and a critical comment from Professor Befring, deputy chairman of NEM about such behaviour. A news site about research and an academic news site have also written about the incident.
Tuller's article here Norwegian news articles here and here Thread here
This autumn the newspaper Morgenbladet wrote about a conference for researchers with a "biopsychosocial" approach to ME, where the organiser thought it necessary to keep the conference secret and to have security as well as the police on standby. The organiser said to the newspaper that ME patients were out to get them. Patient advocate Nina E. Steinkopf has been in contact with the University where the conference took place, with the police and with the organiser, and can't find any record or evidence that the police were ever involved.
Article here Thread here
Questionnaire on level of functionality Trude Schei from the Norwegian ME Association recently gave a presentation on her work on developing a questionnaire for ME patients in order to assess their level of functionality. The lecture is in Norwegian, but forum member Ravn has provided a summary in the thread.
Lecture here Thread here
UK BACME (British Association of Clinicians in ME/CFS) Primary Care Guide to ME/CFS. This 24 page document mostly follows the 2021 NICE guideline, and describes primary care as the expected provider of diagnosis, management advice, ongoing care and annual reviews.
BACME guide here Thread here
UK Forward ME Minutes for the November meeting include reports from MEAction on Millions Missing events in London and Scotland; MEA on their work on monitoring implementation of the NICE guideline and their distribution of materials about ME/CFS to GP's. Also updates on the DHSC groups and DecodeME. Discussion included the future role of ForwardME.
Minutes here Thread here
Trial by Error by David Tuller Recent Articles in The Guardian, CNBC and Popular Science
Tuller highlights three recent media articles on ME and on Long Covid.
Article here Thread here
USA - CDC The ME/CFS Stakeholder Engagement and Communication (MECFS - SEC) Conference Call was held on December 6. Elizabeth Unger shared Updates from CDC. Guest speaker David Systrom presented "Neurovascular Dysregulation Underlies Exercise Intolerance in ME/CFS."
CDC Website here Thread here
USA - NIH A recording of the August 26 NIH ME/CFS Advocacy Call, along with a transcript, are now available.
Video here Transcript here Thread here
Healthy Debate Groundbreaking research into ME/CFS a pandemic ‘silver lining’
Includes discussion of research being done by Alain Moreau of the Open Medicine Foundation.
Article here Thread here
Popular Science What patients find a long COVID clinics: rejection, outdated therapies, and unanswered questions
Good article on the lack of proper care for Long Covid and the importance of letting patients lead the way to improve it. Provides information on ME, PEM and the problems with GET. Dr. Lucinda Bateman says many people with long COVID meet the criteria for ME/CFS and considers them as having SARS-CoV-2 induced ME/CFS. She says: "We need skilled chronic illness managers to coordinate the care of people with long COVID and other post-viral conditions". Jamie Seltzer from #MEAction says the narrative of Long COVID as "mysterious" is frustrating as it functions as an excuse to not help when there are a lot that can be done for the patients.
Article here Thread here
TIME It Isn't Just Long COVID. Post-Viral Illnesses Are More Common Than You Think
Good article about post viral disease with emphasis on ME. Interviews with Dr. Bateman, Professor Iwasaki and Dr. Klimas.
Article here Thread here
Denmark A Danish newspaper about medical news has an interview with Bendt Nielsen who used to work as a senior doctor at Aarhus University Hospital, but now suffers from severe ME. He deteriorated after treatment with GET and wants the health care system to increase its knowledge and effort for this patient group. The newspaper also has an article providing information about ME.
Interview here ME article here (paywalled) Thread here
iNews Living with chronic fatigue syndrome: 'I used to climb mountains, now I need a stair lift because of ME'
Lizzie Horn has been suffering from ME since she was 14 years old. She is now 28 years old and tells in this article in her own words about how the disease has greatly impacted her life, how she manages every day life and of her hope that there one day will be a successful treatment.
Article here Thread here
.......................
Research news
European ME Coalition (EMEC)
More than 2 years after the adoption of the ME/CFS resolution, the European Commission has finally taken action. The Horizon Europe work program includes a new call for research on high-burden, under-researched diseases such as (but not limited to) ME/CFS.
Article here Thread here
DecodeME Webinar recording and transcript – Taking part in DecodeME – 16th November 2022 now available. As well as reporting progress with the study, the transcript shows ome preliminarly results from the questionnaire part of the study, including very few participants recovered or improving, and high percentages with headaches and brain fog.
Recording and transcript here Participate here Thread here
.......................
Research
Tissue specific signature of HHV-6 infection in ME/CFS - Prusty et al
".. we attempted to analyze active HHV-6 transcripts in postmortem tissue biopsies from a small cohort of ME/CFS patients and matched controls."
"Our results show abundant viral miRNA in various regions of the human brain and associated neuronal tissues including the spinal cord that is only detected in ME/CFS patients and not in controls."
Frontiers in Molecular Biosciences | Thread
Connectivity between Salience and Default Mode Networks and subcortical nodes distinguishes between two classes of ME/CFS - Su et al
"...we acquired resting state and task fMRI with an advanced scanner for... 24 healthy controls (HC) and 42 ME/CFS patients, 18 meeting International Consensus Criteria (ICC) and 24 meeting Fukuda criteria."
Between group differences were found. The abstract concludes: "Different regulatory connections are consistent with the impaired cognitive performance and sleep-wake cycle of ME/CFS. Different neuropathology is involved in ICC and Fukuda classes."
Brain Connectivity | Thread
Muscle sodium content in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Petter et al.
In a pilot study on 6 ME/CFS patients, the research team of Carmen Scheibenbogen found muscle sodium content to be higher than in matched controls.
Journal of Translational Medicine | Thread
Biopsychosocial Model or Bio-political Ideology? Medically unexplained symptoms, welfare reform and the implications for Long-COVID - Joanne Hunt
In this 47-page document Joanne Hunt argues that the biopsychosocial model lacks empirical support, that its application to people with ME/CFS is without foundation, and that its misuse has had a damaging impact on the lives of many people.
Citizen Network Research | Thread
Long Covid research
Orthostatic Intolerance after COVID-19 Infection: Is Disturbed Microcirculation of the Vasa Vasorum of Capacitance Vessels the Primary Defect? — Wirth and Löhn
"Here, we propose an alternative, primary vascular mechanism as the underlying cause of OI in Long COVID. We assume that the capacitance vessel system, which plays a key role in physiologic orthostatic regulation, becomes dysfunctional due to a disturbance of the microvessels and the vasa vasorum, which supply large parts of the wall of those large vessels."
Medicina | Thread
Impaired pulmonary and muscle function during moderate exercise in female patients recovered from SARS-CoV-2 — Pleguzuelos et al
"Ventilatory inefficiency significantly increased in the patients recovered from SARS-CoV-2 compared with the control group (P < 0.001)."
Nature Scientific Reports | Thread
Understanding Long COVID; Mitochondrial Health and Adaptation—Old Pathways, New Problems — Nunn et al
"Long COVID could thus be described as a virally induced chronic and self-perpetuating metabolically imbalanced non-resolving state characterised by mitochondrial dysfunction, where reactive oxygen species continually drive inflammation and a shift towards glycolysis."
Biomedicines | Thread
COVID-19 and elite sport: Cardiovascular implications and return-to-play — Faghy et al
"In the absence of longitudinal data sets from athlete populations, the incidence of developing prolonged and debilitating symptoms (i.e., Long COVID) that affects a return to training and competition remains a challenge to sports and exercise scientists, sports medicine practitioners and clinical groups."
Progress in Cardiovascular Diseases | Thread
Ambulatory blood pressure variability in young adults with Long-Covid syndrome — Ternushchak et al
"The average values of 24-hour ambulatory blood pressure, mean BP, daytime and nighttime systolic BP, diastolic BP and pulse pressure were found to be significantly different among patients with long COVID syndrome and control group."
Wiadomości Lekarskie (Polish Medical Journal) | Thread
.......................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
India The Supreme Court directs the Ministry of Health and Family Welfare to find ways to improve conditions for people with ME/CFS.
Article here Thread here
UK ME Research Collaborative (MERC) - Applications invited for Patient Advisory Group until end of Feb 2023
"Are you interested in joining a patient and carers group which plays an active role in promoting the voice and inclusion of people with ME/CFS in research activities? The Patient Advisory Group (PAG) to the UK M.E. Research Collaborative (MERC) is recruiting a number of new adult members, based in the UK"
MEA article here Application pack here Thread here
Sweden Journalist Agnes Arpi asks in Altinget if ME patients really are the ones who have to do the investigation of care provided to this patient group themselves. She refers to patient advocate and forum member Mitt Eremitage who has revealed a lack of ethical approval in research, staff with double roles and treatments involving risk of deterioration and which also excludes participation by the most severe patients.
Article here (in Swedish) Thread here
Norway A research director at the Norwegian Institute of Public Health has tried to influence a member of the National Committee for Medical and Health research Ethics (NEM) in favour of a controversial study on the alternative treatment Lightning Process before the committee was to asses it. David Tuller has written an article which includes a text from patient advocate Nina E. Steinkopf with further details and a critical comment from Professor Befring, deputy chairman of NEM about such behaviour. A news site about research and an academic news site have also written about the incident.
Tuller's article here Norwegian news articles here and here Thread here
This autumn the newspaper Morgenbladet wrote about a conference for researchers with a "biopsychosocial" approach to ME, where the organiser thought it necessary to keep the conference secret and to have security as well as the police on standby. The organiser said to the newspaper that ME patients were out to get them. Patient advocate Nina E. Steinkopf has been in contact with the University where the conference took place, with the police and with the organiser, and can't find any record or evidence that the police were ever involved.
Article here Thread here
Questionnaire on level of functionality Trude Schei from the Norwegian ME Association recently gave a presentation on her work on developing a questionnaire for ME patients in order to assess their level of functionality. The lecture is in Norwegian, but forum member Ravn has provided a summary in the thread.
Lecture here Thread here
UK BACME (British Association of Clinicians in ME/CFS) Primary Care Guide to ME/CFS. This 24 page document mostly follows the 2021 NICE guideline, and describes primary care as the expected provider of diagnosis, management advice, ongoing care and annual reviews.
BACME guide here Thread here
UK Forward ME Minutes for the November meeting include reports from MEAction on Millions Missing events in London and Scotland; MEA on their work on monitoring implementation of the NICE guideline and their distribution of materials about ME/CFS to GP's. Also updates on the DHSC groups and DecodeME. Discussion included the future role of ForwardME.
Minutes here Thread here
Trial by Error by David Tuller Recent Articles in The Guardian, CNBC and Popular Science
Tuller highlights three recent media articles on ME and on Long Covid.
Article here Thread here
USA - CDC The ME/CFS Stakeholder Engagement and Communication (MECFS - SEC) Conference Call was held on December 6. Elizabeth Unger shared Updates from CDC. Guest speaker David Systrom presented "Neurovascular Dysregulation Underlies Exercise Intolerance in ME/CFS."
CDC Website here Thread here
USA - NIH A recording of the August 26 NIH ME/CFS Advocacy Call, along with a transcript, are now available.
Video here Transcript here Thread here
Healthy Debate Groundbreaking research into ME/CFS a pandemic ‘silver lining’
Includes discussion of research being done by Alain Moreau of the Open Medicine Foundation.
Article here Thread here
Popular Science What patients find a long COVID clinics: rejection, outdated therapies, and unanswered questions
Good article on the lack of proper care for Long Covid and the importance of letting patients lead the way to improve it. Provides information on ME, PEM and the problems with GET. Dr. Lucinda Bateman says many people with long COVID meet the criteria for ME/CFS and considers them as having SARS-CoV-2 induced ME/CFS. She says: "We need skilled chronic illness managers to coordinate the care of people with long COVID and other post-viral conditions". Jamie Seltzer from #MEAction says the narrative of Long COVID as "mysterious" is frustrating as it functions as an excuse to not help when there are a lot that can be done for the patients.
Article here Thread here
TIME It Isn't Just Long COVID. Post-Viral Illnesses Are More Common Than You Think
Good article about post viral disease with emphasis on ME. Interviews with Dr. Bateman, Professor Iwasaki and Dr. Klimas.
Article here Thread here
Denmark A Danish newspaper about medical news has an interview with Bendt Nielsen who used to work as a senior doctor at Aarhus University Hospital, but now suffers from severe ME. He deteriorated after treatment with GET and wants the health care system to increase its knowledge and effort for this patient group. The newspaper also has an article providing information about ME.
Interview here ME article here (paywalled) Thread here
iNews Living with chronic fatigue syndrome: 'I used to climb mountains, now I need a stair lift because of ME'
Lizzie Horn has been suffering from ME since she was 14 years old. She is now 28 years old and tells in this article in her own words about how the disease has greatly impacted her life, how she manages every day life and of her hope that there one day will be a successful treatment.
Article here Thread here
.......................
Research news
European ME Coalition (EMEC)
More than 2 years after the adoption of the ME/CFS resolution, the European Commission has finally taken action. The Horizon Europe work program includes a new call for research on high-burden, under-researched diseases such as (but not limited to) ME/CFS.
Article here Thread here
DecodeME Webinar recording and transcript – Taking part in DecodeME – 16th November 2022 now available. As well as reporting progress with the study, the transcript shows ome preliminarly results from the questionnaire part of the study, including very few participants recovered or improving, and high percentages with headaches and brain fog.
Recording and transcript here Participate here Thread here
.......................
Research
Tissue specific signature of HHV-6 infection in ME/CFS - Prusty et al
".. we attempted to analyze active HHV-6 transcripts in postmortem tissue biopsies from a small cohort of ME/CFS patients and matched controls."
"Our results show abundant viral miRNA in various regions of the human brain and associated neuronal tissues including the spinal cord that is only detected in ME/CFS patients and not in controls."
Frontiers in Molecular Biosciences | Thread
Connectivity between Salience and Default Mode Networks and subcortical nodes distinguishes between two classes of ME/CFS - Su et al
"...we acquired resting state and task fMRI with an advanced scanner for... 24 healthy controls (HC) and 42 ME/CFS patients, 18 meeting International Consensus Criteria (ICC) and 24 meeting Fukuda criteria."
Between group differences were found. The abstract concludes: "Different regulatory connections are consistent with the impaired cognitive performance and sleep-wake cycle of ME/CFS. Different neuropathology is involved in ICC and Fukuda classes."
Brain Connectivity | Thread
Muscle sodium content in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Petter et al.
In a pilot study on 6 ME/CFS patients, the research team of Carmen Scheibenbogen found muscle sodium content to be higher than in matched controls.
Journal of Translational Medicine | Thread
Biopsychosocial Model or Bio-political Ideology? Medically unexplained symptoms, welfare reform and the implications for Long-COVID - Joanne Hunt
In this 47-page document Joanne Hunt argues that the biopsychosocial model lacks empirical support, that its application to people with ME/CFS is without foundation, and that its misuse has had a damaging impact on the lives of many people.
Citizen Network Research | Thread
Long Covid research
Orthostatic Intolerance after COVID-19 Infection: Is Disturbed Microcirculation of the Vasa Vasorum of Capacitance Vessels the Primary Defect? — Wirth and Löhn
"Here, we propose an alternative, primary vascular mechanism as the underlying cause of OI in Long COVID. We assume that the capacitance vessel system, which plays a key role in physiologic orthostatic regulation, becomes dysfunctional due to a disturbance of the microvessels and the vasa vasorum, which supply large parts of the wall of those large vessels."
Medicina | Thread
Impaired pulmonary and muscle function during moderate exercise in female patients recovered from SARS-CoV-2 — Pleguzuelos et al
"Ventilatory inefficiency significantly increased in the patients recovered from SARS-CoV-2 compared with the control group (P < 0.001)."
Nature Scientific Reports | Thread
Understanding Long COVID; Mitochondrial Health and Adaptation—Old Pathways, New Problems — Nunn et al
"Long COVID could thus be described as a virally induced chronic and self-perpetuating metabolically imbalanced non-resolving state characterised by mitochondrial dysfunction, where reactive oxygen species continually drive inflammation and a shift towards glycolysis."
Biomedicines | Thread
COVID-19 and elite sport: Cardiovascular implications and return-to-play — Faghy et al
"In the absence of longitudinal data sets from athlete populations, the incidence of developing prolonged and debilitating symptoms (i.e., Long COVID) that affects a return to training and competition remains a challenge to sports and exercise scientists, sports medicine practitioners and clinical groups."
Progress in Cardiovascular Diseases | Thread
Ambulatory blood pressure variability in young adults with Long-Covid syndrome — Ternushchak et al
"The average values of 24-hour ambulatory blood pressure, mean BP, daytime and nighttime systolic BP, diastolic BP and pulse pressure were found to be significantly different among patients with long COVID syndrome and control group."
Wiadomości Lekarskie (Polish Medical Journal) | Thread
.......................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 12th December 2022
News, articles and advocacy
Professor Brian M. Hughes is guest in the latest podcast episode from the Norwegian ME Association. He discusses themes of stigma towards ME, the challenges patients face, long covid and society's view of chronic illness.
Podcast here Thread here
Dr Mark Vink has written an excellent reply to an opinion piece by Reme, Flottorp & Wyller refuting their claim of GET/CBT as effective ME treatments.
Opinion piece here (in Norwegian) Thread here
Norway Last week it became known that a research director from the Norwegian Institute of Public Health had tried to influence a member of the National Research Ethics Committee (NEM) in favour of a controversial study on the alternative method Lightning Process as ME treatment. Professor in psychology Jonas Kunst and Psychologist Sidsel Fjelltun have written a critical opinion piece against Lightning Process and the research director's approach. Law Professor Anne Kjersti Befring says to the research news site forskning.no that it's time researchers and other professional actors make an effort to stop the polarisation about ME and that the way out of this must begin with an increased degree of humility and responsiveness to the patients. Professor Kunst is also interviewed for a journal about psychology on his criticism of the attempt to influence NEM.
Articles here, here and here Thread here
Solve M.E. got a $247,500 grant from the Chan Zuckerberg Initiative. They plan to use these funds to "train a network of patient leaders, scientists and other stakeholders with diverse backgrounds to enhance patient engagement in Long Covid research."
Press Release here Thread here
The Fall 2022 edition of the Solve M.E. Chronicle is now available. Topics include an update on the Ramsay Researchers, the first You + ME Registry peer-reviewed publication, the Long Covid PSA campaign, and an excerpt from Ryan Prior’s new book, The Long Haul.
Chronicle here Thread here
Sweden The Swedish Social Insurance Agency may no longer require objective medical findings in patients with burnout syndrome or ME/CFS. This will be of help for patients in need of disability benefits.
Article here Thread here
Germany
MillionsMissing Germany is organizing a postcard campaign to IQWIG and the Federal Ministry of Health to correct its report on ME/CFS. The initiative is supported by other ME/CFS patient organizations in Germany, Austria, and Switzerland.
Article here Thread here
#MEAction has a new post in their "Facets of ME" series, "Centering ME During the Holidays." This issue focuses on pacing yourself during the holiday season.
Article here Thread here
Trial by Error by David Tuller Is the long Covid Phenomenon an Expression of "Psychosocial Distress"?
A thorough and critical review of a recent article in The New Republic by Natalie Shure.
Article here Thread here
Canada The Task Force on Post-COVID-19 Condition has released a report with their recommendations for Long Covid.
Report here Thread here
.................
Research news
ME Research UK 2022 - Our Research Year in Review
Summarises past and present projects funded or part funded by MERUK.
Article here Thread here
UK DecodeME "We're taking a break from 17th Dec – 4th Jan. We won’t be answering emails, the phone, or posting on social media, but we can’t wait to get stuck back in in 2023! Wishing everyone a happy holiday – the DecodeME team." Participants can still do the questionnaire part of the study. Those selected to do the genetic part if the study be sent their spit kits in January.
Take part here Thread here
Charite University, Berlin "This observational study aims to assess symptom outcome and functional ability in 20 patients with Post-COVID Syndrome (PCS) meeting ME/CFS diagnostic criteria with elevated ß2R antibodies undergoing antibody depletion by [Immunoadsorption]."
Trial Registration here Thread here
..................
Research
J. Immunology and Allergy
What Causes ME/CFS: The Role of the Dysfunctional Immune System and Viral Infections - Bansal et al.
The authors conclude that research still hasn't identified clear pathways but there are clues in the immune system, viral involvement, and mitochondrial dysfunction.
Paper | Thread
Utrecht University
Language as a Predictor of Anxiety, Depression, and Self-Efficacy Scores and Recovery Rate in Teenagers with Chronic Fatigue Syndrome - M. Fennema
In this thesis for a Master in Artificial Intelligence at the University of Utrecht, Mara Fennema used data from 102 CFS patients who received online email-based Cognitive Behavioural Therapy. Her analysis shows that “it is possible to predict anxiety, depression, self-efficacy, and patient recovery based on language use.”
Thesis | Thread
Long Covid research
J Translational Medicine
Longitudinal transcriptional analysis of peripheral blood leukocytes in COVID-19 convalescent donors — Gedda et al
"The differentially expressed genes were involved in several pathways, including virus-host interaction, interleukin and JAK-STAT signaling, T-cell co-stimulation, and immune exhaustion."
Article | Thread
Canadian J Cardiology
Objective Hemodynamic Cardiovascular Autonomic Abnormalities in Post-Acute Sequelae of COVID-19 — Hira et al
"Females have increased frequency of POTS(HR), but [Initial Orthostatic Hypotension] is equally prevalent between sexes. Finally, even non-hospitalized “mild” infections can result in long-term [Cardiovascular Autonomic Abnormalities]."
Article | Thread
Nature Cardiovascular Research
Apparent risks of postural orthostatic tachycardia syndrome diagnoses after COVID-19 vaccination and SARS-Cov-2 Infection — Kwan et al
"Our results identify a possible association between COVID-19 vaccination and incidence of POTS. Notwithstanding the probable low incidence of POTS after COVID-19 vaccination, particularly when compared to SARS-Cov-2 post-infection odds, which were five times higher, our results suggest that further studies are needed to investigate the incidence and etiology of POTS occurring after COVID-19 vaccination."
Article | Thread
Int J Environ Res Public Health
Post-Viral Fatigue Following SARS-CoV-2 Infection during Pregnancy: A Longitudinal Comparative Study — da Silva Sousa Oliveira et al
"Post-viral fatigue prevalence is higher in women infected during pregnancy; fatigue’s risk and duration increased with the severity of infection."
Article | Thread
Int J Cardiology
Acute pericarditis as a major clinical manifestation of long COVID-19 syndrome — Dini et al
"It has been recognized that inadequate or excessive immune response driven by T and B cell-mediated mechanisms may be implicated in the occurrence of pericarditis and myocarditis after viral infections. Our finding of more frequent occurrence of pericarditis in patients presenting [a] history of autoimmune and allergic disorders suggests that an association might be present"
Article | Thread
Nutrients
Effects of l-Arginine Plus Vit C on Physical Performance, Endothelial Function, and Persistent Fatigue in Adults with Long COVID — Tosato et al
Article | Thread
..................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
Professor Brian M. Hughes is guest in the latest podcast episode from the Norwegian ME Association. He discusses themes of stigma towards ME, the challenges patients face, long covid and society's view of chronic illness.
Podcast here Thread here
Dr Mark Vink has written an excellent reply to an opinion piece by Reme, Flottorp & Wyller refuting their claim of GET/CBT as effective ME treatments.
Opinion piece here (in Norwegian) Thread here
Norway Last week it became known that a research director from the Norwegian Institute of Public Health had tried to influence a member of the National Research Ethics Committee (NEM) in favour of a controversial study on the alternative method Lightning Process as ME treatment. Professor in psychology Jonas Kunst and Psychologist Sidsel Fjelltun have written a critical opinion piece against Lightning Process and the research director's approach. Law Professor Anne Kjersti Befring says to the research news site forskning.no that it's time researchers and other professional actors make an effort to stop the polarisation about ME and that the way out of this must begin with an increased degree of humility and responsiveness to the patients. Professor Kunst is also interviewed for a journal about psychology on his criticism of the attempt to influence NEM.
Articles here, here and here Thread here
Solve M.E. got a $247,500 grant from the Chan Zuckerberg Initiative. They plan to use these funds to "train a network of patient leaders, scientists and other stakeholders with diverse backgrounds to enhance patient engagement in Long Covid research."
Press Release here Thread here
The Fall 2022 edition of the Solve M.E. Chronicle is now available. Topics include an update on the Ramsay Researchers, the first You + ME Registry peer-reviewed publication, the Long Covid PSA campaign, and an excerpt from Ryan Prior’s new book, The Long Haul.
Chronicle here Thread here
Sweden The Swedish Social Insurance Agency may no longer require objective medical findings in patients with burnout syndrome or ME/CFS. This will be of help for patients in need of disability benefits.
Article here Thread here
Germany
MillionsMissing Germany is organizing a postcard campaign to IQWIG and the Federal Ministry of Health to correct its report on ME/CFS. The initiative is supported by other ME/CFS patient organizations in Germany, Austria, and Switzerland.
Article here Thread here
#MEAction has a new post in their "Facets of ME" series, "Centering ME During the Holidays." This issue focuses on pacing yourself during the holiday season.
Article here Thread here
Trial by Error by David Tuller Is the long Covid Phenomenon an Expression of "Psychosocial Distress"?
A thorough and critical review of a recent article in The New Republic by Natalie Shure.
Article here Thread here
Canada The Task Force on Post-COVID-19 Condition has released a report with their recommendations for Long Covid.
Report here Thread here
.................
Research news
ME Research UK 2022 - Our Research Year in Review
Summarises past and present projects funded or part funded by MERUK.
Article here Thread here
UK DecodeME "We're taking a break from 17th Dec – 4th Jan. We won’t be answering emails, the phone, or posting on social media, but we can’t wait to get stuck back in in 2023! Wishing everyone a happy holiday – the DecodeME team." Participants can still do the questionnaire part of the study. Those selected to do the genetic part if the study be sent their spit kits in January.
Take part here Thread here
Charite University, Berlin "This observational study aims to assess symptom outcome and functional ability in 20 patients with Post-COVID Syndrome (PCS) meeting ME/CFS diagnostic criteria with elevated ß2R antibodies undergoing antibody depletion by [Immunoadsorption]."
Trial Registration here Thread here
..................
Research
J. Immunology and Allergy
What Causes ME/CFS: The Role of the Dysfunctional Immune System and Viral Infections - Bansal et al.
The authors conclude that research still hasn't identified clear pathways but there are clues in the immune system, viral involvement, and mitochondrial dysfunction.
Paper | Thread
Utrecht University
Language as a Predictor of Anxiety, Depression, and Self-Efficacy Scores and Recovery Rate in Teenagers with Chronic Fatigue Syndrome - M. Fennema
In this thesis for a Master in Artificial Intelligence at the University of Utrecht, Mara Fennema used data from 102 CFS patients who received online email-based Cognitive Behavioural Therapy. Her analysis shows that “it is possible to predict anxiety, depression, self-efficacy, and patient recovery based on language use.”
Thesis | Thread
Long Covid research
J Translational Medicine
Longitudinal transcriptional analysis of peripheral blood leukocytes in COVID-19 convalescent donors — Gedda et al
"The differentially expressed genes were involved in several pathways, including virus-host interaction, interleukin and JAK-STAT signaling, T-cell co-stimulation, and immune exhaustion."
Article | Thread
Canadian J Cardiology
Objective Hemodynamic Cardiovascular Autonomic Abnormalities in Post-Acute Sequelae of COVID-19 — Hira et al
"Females have increased frequency of POTS(HR), but [Initial Orthostatic Hypotension] is equally prevalent between sexes. Finally, even non-hospitalized “mild” infections can result in long-term [Cardiovascular Autonomic Abnormalities]."
Article | Thread
Nature Cardiovascular Research
Apparent risks of postural orthostatic tachycardia syndrome diagnoses after COVID-19 vaccination and SARS-Cov-2 Infection — Kwan et al
"Our results identify a possible association between COVID-19 vaccination and incidence of POTS. Notwithstanding the probable low incidence of POTS after COVID-19 vaccination, particularly when compared to SARS-Cov-2 post-infection odds, which were five times higher, our results suggest that further studies are needed to investigate the incidence and etiology of POTS occurring after COVID-19 vaccination."
Article | Thread
Int J Environ Res Public Health
Post-Viral Fatigue Following SARS-CoV-2 Infection during Pregnancy: A Longitudinal Comparative Study — da Silva Sousa Oliveira et al
"Post-viral fatigue prevalence is higher in women infected during pregnancy; fatigue’s risk and duration increased with the severity of infection."
Article | Thread
Int J Cardiology
Acute pericarditis as a major clinical manifestation of long COVID-19 syndrome — Dini et al
"It has been recognized that inadequate or excessive immune response driven by T and B cell-mediated mechanisms may be implicated in the occurrence of pericarditis and myocarditis after viral infections. Our finding of more frequent occurrence of pericarditis in patients presenting [a] history of autoimmune and allergic disorders suggests that an association might be present"
Article | Thread
Nutrients
Effects of l-Arginine Plus Vit C on Physical Performance, Endothelial Function, and Persistent Fatigue in Adults with Long COVID — Tosato et al
Article | Thread
..................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 19th December 2022
Seasonal good wishes to all our readers
News, articles and advocacy
UK Physios for ME have posted a Christmas message on their website.
"We are thrilled to announce that our book “A physiotherapist’s guide to understanding and managing ME/CFS” will be published in August 2023". They also report progress on their research.
Article | Thread
USA - Solve M.E. Advocacy Week in 2023 will take place both virtually and in-person the week of April 17 - 22. Registration required for both in-person and virtual meetings. Other ways to show support include contacting Congress members and posting on social media.
Announcement | Thread
The Science Bit ME, Long Covid, and the History of Medical Stigma (Podcast)
Short article from Professor Brian Hughes about his participation in a podcast episode hosted by the Norwegian ME Association about the medical stigma of post-viral conditions as ME and Long Covid.
Article l Thread
UK Sheffield ME & FM group Recording of the talk 'Vascular pathology in post-viral conditions: the role of microclots' with Prof Resia Pretorius and Dr Caroline Dalton is now available.
Video | Thread
USA Four more free at-home COVID tests can be ordered on the US post office website. Free shipping.
Website | Thread
SELF What Does It Mean to Really, Truly Rest?
Article by Rachel Wilkerson Miller who explores the concept of resting after having had Covid and mononucleosis. Margareta Asp, PhD and #MEAction's Jamie Seltzer provide valuable insight on the importance of resting and how to do it. Seltzer says: "This isn't something that you can push through. This is one of those knots where the harder you pull, the tighter it gets".
Article l Thread
ABC News Finding my way out of the fog
ABC's reporter and Long Covid sufferer Jess Davis has written a well researched article which goes into issues as POTS, ME and the problems with exercise as treatment. Includes interviews with Dr. David Putrino who says a wake-up call across the board is needed and with nurse and researcher Marie-Claire Seeley from the Australian POTS foundation who points to ingrained stigma towards post-infection illnesses as reason behind Long Covid patients facing the same problems as ME patients have.
Article l Thread
Newsweek Long Haul COVID: Like 'Demon Had Hijacked My Nervous System' Says Author
This Q & A session with Ryan Prior discusses his experience with ME/CFS and Long Covid. "Long COVID research can translate to ME/CFS if researchers compare the diseases side-by-side and incorporate key understandings from the past 30 years of post-viral research."
Article | Thread
...................
UK NICE ME/CFS guideline
Implementation of the guideline
UK Government Department of Health and Social Care
Update on the working groups delivery plan. This 3 page document outlines the work undertaken by each of the groups so far, including on research, clinician education and care. The delivery plan is expected to be published early in 2023.
The ME Association has published a copy of the document and invites feedback which they will collate and pass on in the New Year.
Thread with document | MEA article
BACME (The British Association of Clinicians in ME/CFS)
ME/CFS Care and Support Plan Guidance
This document includes guidance and templates for Care and Support plans to enable better self management and communication with clinicians and carers.
Thread with document
Opposition to the guideline
Snippets have been revealed on social media from an upcoming publication by Peter White, leader of the PACE trial, and 40 other like minded clinicians, titled:
"Eight major errors in the review process and interpretation of the evidence in the NICE guideline for [CFS] and [ME]." The quoted sections focus on criticism of the NICE guideline's evidence review, definition of ME/CFS, and removal of GET.
Thread
.........................
Research news and commentary
Arc Institute
Applications for funding are due to close in January 2023. The Arc Institute is an independent nonprofit research organisation that operates in collaboration with Stanford, University of California, Berkeley, and UCSF. It has been established with a $650m fund to allow ongoing scientific investigation into complex human diseases.
Website | Thread
Trial by Error by David Tuller A Stupid Study of Exercise for Long Covid Patients with Post-Exertional Symptoms Exacerbation
A critical takedown of a small study from Leeds on a "structured pacing protocol" as treatment for Long Covid patients with PEM. In reality the treatment was basically GET. The study had less than impressive results, despite the researchers and some media articles reporting otherwise.
Article l Thread
Medscape Long COVID: Who's Working to Find Treatments?
12 minute interview (and transcript) with Dr. Walter Koroshetz from NIH on Long Covid. Nothing new, but ME/CFS is mentioned briefly as an area where lots of small studies have been done, but not replicated, and that this shouldn't happen with Long Covid as well.
Article l Thread
.....................
Research
Brain Sciences
Anti-Correlated Myelin-Sensitive MRI Levels in Humans Consistent with a Subcortical to Sensorimotor Regulatory Process—Multi-Cohort Multi-Modal Evidence - Barnden et al.
Using MRI on healthy controls and people with ME/CFS the authors report on the findings in the controls in this paper. The abstract concludes: "We suggest a mechanism has evolved whereby relatively low subcortical myelination in an individual is compensated by upregulated sensorimotor myelination to maintain adequate sensorimotor performance."
Article | Thread
Behaviour Research and Therapy
“The relation between cognitive-behavioural responses to symptoms in patients with long term medical conditions and the outcome of cognitive behavioural therapy for fatigue – A secondary analysis of four RCTs” - De Gier et al.
In this paper, the Dutch research team of Hans Knoop argues that “the same cognitive-behavioural responses to fatigue moderate and mediate treatment outcome across conditions, supporting a transdiagnostic approach to fatigue.” The conditions studied include CFS, Multiple Sclerosis, Type 1 Diabetes, and Q-fever fatigue syndrome.
Article | Thread
Neurology International
ME/CFS and Post-Exertional Malaise among Patients with Long COVID — Jason et al
"This study supports prior findings that ME/CFS occurs with high prevalence among those who have persistent COVID-19 symptoms."
Article | Thread
J Medical Virology
Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort with the post-COVID-19 syndrome — Parker et al
"A structured pacing protocol significantly reduces PESE episodes and improves overall health in PCS." Forum discussion raised problems with this research, see David Tuller's commentary above.
Article | Thread
Science Translational Medicine
Persistent post–COVID-19 smell loss is associated with immune cell infiltration and altered gene expression in olfactory epithelium — Finlay et al
"These findings indicate that T cell–mediated inflammation persists in the olfactory epithelium long after SARS-CoV-2 has been eliminated from the tissue, suggesting a mechanism for long-term post–COVID-19 smell loss."
Article | Thread
Preprint
T cell responses to SARS-CoV-2 in people with and without neurologic symptoms of long COVID — Visvabharathy et al
"Based on our data, it is therefore possible that enhanced IL-6 production from CD8+ T cells in Neuro-PASC patients may upregulate KLRC1 and suppress CD8+ T cell function, which may impact Neuro-PASC symptom severity. Together, these data illuminate a specific T cell signature associated with Neuro-PASC."
Article | Thread
.....................
S4ME social media: Facebook, Twitter and YouTube
Seasonal good wishes to all our readers News, articles and advocacy
UK Physios for ME have posted a Christmas message on their website.
"We are thrilled to announce that our book “A physiotherapist’s guide to understanding and managing ME/CFS” will be published in August 2023". They also report progress on their research.
Article | Thread
USA - Solve M.E. Advocacy Week in 2023 will take place both virtually and in-person the week of April 17 - 22. Registration required for both in-person and virtual meetings. Other ways to show support include contacting Congress members and posting on social media.
Announcement | Thread
The Science Bit ME, Long Covid, and the History of Medical Stigma (Podcast)
Short article from Professor Brian Hughes about his participation in a podcast episode hosted by the Norwegian ME Association about the medical stigma of post-viral conditions as ME and Long Covid.
Article l Thread
UK Sheffield ME & FM group Recording of the talk 'Vascular pathology in post-viral conditions: the role of microclots' with Prof Resia Pretorius and Dr Caroline Dalton is now available.
Video | Thread
USA Four more free at-home COVID tests can be ordered on the US post office website. Free shipping.
Website | Thread
SELF What Does It Mean to Really, Truly Rest?
Article by Rachel Wilkerson Miller who explores the concept of resting after having had Covid and mononucleosis. Margareta Asp, PhD and #MEAction's Jamie Seltzer provide valuable insight on the importance of resting and how to do it. Seltzer says: "This isn't something that you can push through. This is one of those knots where the harder you pull, the tighter it gets".
Article l Thread
ABC News Finding my way out of the fog
ABC's reporter and Long Covid sufferer Jess Davis has written a well researched article which goes into issues as POTS, ME and the problems with exercise as treatment. Includes interviews with Dr. David Putrino who says a wake-up call across the board is needed and with nurse and researcher Marie-Claire Seeley from the Australian POTS foundation who points to ingrained stigma towards post-infection illnesses as reason behind Long Covid patients facing the same problems as ME patients have.
Article l Thread
Newsweek Long Haul COVID: Like 'Demon Had Hijacked My Nervous System' Says Author
This Q & A session with Ryan Prior discusses his experience with ME/CFS and Long Covid. "Long COVID research can translate to ME/CFS if researchers compare the diseases side-by-side and incorporate key understandings from the past 30 years of post-viral research."
Article | Thread
...................
UK NICE ME/CFS guideline
Implementation of the guideline
UK Government Department of Health and Social Care
Update on the working groups delivery plan. This 3 page document outlines the work undertaken by each of the groups so far, including on research, clinician education and care. The delivery plan is expected to be published early in 2023.
The ME Association has published a copy of the document and invites feedback which they will collate and pass on in the New Year.
Thread with document | MEA article
BACME (The British Association of Clinicians in ME/CFS)
ME/CFS Care and Support Plan Guidance
This document includes guidance and templates for Care and Support plans to enable better self management and communication with clinicians and carers.
Thread with document
Opposition to the guideline
Snippets have been revealed on social media from an upcoming publication by Peter White, leader of the PACE trial, and 40 other like minded clinicians, titled:
"Eight major errors in the review process and interpretation of the evidence in the NICE guideline for [CFS] and [ME]." The quoted sections focus on criticism of the NICE guideline's evidence review, definition of ME/CFS, and removal of GET.
Thread
.........................
Research news and commentary
Arc Institute
Applications for funding are due to close in January 2023. The Arc Institute is an independent nonprofit research organisation that operates in collaboration with Stanford, University of California, Berkeley, and UCSF. It has been established with a $650m fund to allow ongoing scientific investigation into complex human diseases.
Website | Thread
Trial by Error by David Tuller A Stupid Study of Exercise for Long Covid Patients with Post-Exertional Symptoms Exacerbation
A critical takedown of a small study from Leeds on a "structured pacing protocol" as treatment for Long Covid patients with PEM. In reality the treatment was basically GET. The study had less than impressive results, despite the researchers and some media articles reporting otherwise.
Article l Thread
Medscape Long COVID: Who's Working to Find Treatments?
12 minute interview (and transcript) with Dr. Walter Koroshetz from NIH on Long Covid. Nothing new, but ME/CFS is mentioned briefly as an area where lots of small studies have been done, but not replicated, and that this shouldn't happen with Long Covid as well.
Article l Thread
.....................
Research
Brain Sciences
Anti-Correlated Myelin-Sensitive MRI Levels in Humans Consistent with a Subcortical to Sensorimotor Regulatory Process—Multi-Cohort Multi-Modal Evidence - Barnden et al.
Using MRI on healthy controls and people with ME/CFS the authors report on the findings in the controls in this paper. The abstract concludes: "We suggest a mechanism has evolved whereby relatively low subcortical myelination in an individual is compensated by upregulated sensorimotor myelination to maintain adequate sensorimotor performance."
Article | Thread
Behaviour Research and Therapy
“The relation between cognitive-behavioural responses to symptoms in patients with long term medical conditions and the outcome of cognitive behavioural therapy for fatigue – A secondary analysis of four RCTs” - De Gier et al.
In this paper, the Dutch research team of Hans Knoop argues that “the same cognitive-behavioural responses to fatigue moderate and mediate treatment outcome across conditions, supporting a transdiagnostic approach to fatigue.” The conditions studied include CFS, Multiple Sclerosis, Type 1 Diabetes, and Q-fever fatigue syndrome.
Article | Thread
Neurology International
ME/CFS and Post-Exertional Malaise among Patients with Long COVID — Jason et al
"This study supports prior findings that ME/CFS occurs with high prevalence among those who have persistent COVID-19 symptoms."
Article | Thread
J Medical Virology
Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort with the post-COVID-19 syndrome — Parker et al
"A structured pacing protocol significantly reduces PESE episodes and improves overall health in PCS." Forum discussion raised problems with this research, see David Tuller's commentary above.
Article | Thread
Science Translational Medicine
Persistent post–COVID-19 smell loss is associated with immune cell infiltration and altered gene expression in olfactory epithelium — Finlay et al
"These findings indicate that T cell–mediated inflammation persists in the olfactory epithelium long after SARS-CoV-2 has been eliminated from the tissue, suggesting a mechanism for long-term post–COVID-19 smell loss."
Article | Thread
Preprint
T cell responses to SARS-CoV-2 in people with and without neurologic symptoms of long COVID — Visvabharathy et al
"Based on our data, it is therefore possible that enhanced IL-6 production from CD8+ T cells in Neuro-PASC patients may upregulate KLRC1 and suppress CD8+ T cell function, which may impact Neuro-PASC symptom severity. Together, these data illuminate a specific T cell signature associated with Neuro-PASC."
Article | Thread
.....................
S4ME social media: Facebook, Twitter and YouTube
Last edited by a moderator:
Week beginning 26th December 2022
Happy New Year to all our readers
News, articles and advocacy
Trial by Error by David Tuller Usual Suspects Say NICE Made Eight Errors, Nonsense, Says Committee Member Adam Lowe
David Tuller and NICE Committee member Adam Lowe provide a great "prebuttal" of the eight critiques of the ME/CFS NICE Guidelines in an upcoming publication by Professor Peter White et al.
Interview | Thread
ME/CFS articles in 2022 A compilation of the biggest ME/CFS articles from 2022 based on the news brief has been made with a total of 107 articles. Overviews from previous years show an upward trend in reporting on ME/CFS.
Thread
Petition - Long COVID Justice has started a petition asking the NIH RECOVER initiative to halt any Long Covid trials that focus on exercise therapy or cognitive behavioral therapy.
Petition | Thread
Long Covid Physio has partnered with FisioCamera to deliver educational videos about Long Covid which also will be translated into several languages. The videos are short accessible outlines of key aspects of Long Covid.
Videos | Thread
Fortune Well COVID isn't just infecting you - it could be reactivating viruses that have been dormant in your body for years
On a recent study finding that even mild Covid can cause activation of viruses leading to CFS symptoms. Dr. Azola from the long COVID clinic at Johns Hopkins University School of Medicina has seen several CFS patients who deteriorated after Covid.
Article | Thread
........................
Research news and commentary
UK DecodeME Back in action again in the New Year, we are all encouraged to spread the word so that as many adults as possible in the UK with an ME/CFS diagnosis can participate in the questionnaire part of the study which is already providing useful data. For those invited to donate DNA, spit kits will start being sent out again in January after the Christmas break.
Spread the word | Take part | Thread
ME/CFS Skeptic blog 2022: "Looking back at a year of ME/CFS research"
A thoughtful and clearly written review of the key ME/CFS research published in 2022. "The yield for 2022 is far from impressive but there were a couple of interesting ME/CFS studies that are worth discussing. A recurrent theme seems to be problems with the transport (or utilization) of oxygen into tissues. It will be interesting to see if this hypothesis will receive further support in 2023."
Article | Thread
UK Quadram Institute
"Dr Katharine Seton from the Quadram Institute has been awarded a Solve M.E. Ramsay Research Grant to better understand premature ageing of the immune system in people with ME/CFS."
Article | Thread
Fundraising - Dr Karl Morton's team at Oxford University, are seeking donations to support the continuation of their biomedical ME/CFS research projects.
Article | Thread
Research methodology
Some interesting articles posted in our methodology section this week:
"Science isn't storytelling - An article with dreadful advice for scientists reminds us that not everyone has learned the lessons from the replication crisis" by Stuart Richie.
Article | Thread
"The rise and fall of peer review - Why the greatest scientific experiment in history failed, and why that's a great thing" by Adam Mastroianni
Article | Thread
"Rating scales institutionalise a network of logical errors and conceptual problems in research practices: A rigorous analysis showing ways to tackle psychology’s crises" by Jana Uher
Article | Thread
.........................
Research
Archives of Epidemiology & Public Health Research
The Rise and Fall of the Psychosomatic Approach to MUS, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome - David Marks
A long and detailed study of the history of the development, and views of the major proponents, of the 'biopsychosocial model' as applied to ME/CFS. The article includes extensive analysis of the history, the involvement of funders, flaws in the research and the harm caused to patients. The article concludes:
"Patients with MUS/ME/CFS and their families have not been treated with the dignity, respect and care that is their human right. Patients with MUS/ME/CFS and their families could consider a class action legal case against the injuring parties. At the very least, an apology should be offered to the thousands of ME/ CFS and MUS patients and their families who have been detrimentally affected by this 34-year exercise in failed science."
Article | Thread
Long COVID research
J Thrombosis and Haemostasis
Analysis of thrombogenicity under flow reveals new insights into the prothrombotic state of patients with post-COVID syndrome — Constantinescu-Bercu et al
"Our results confirm a hypercoagulable state in patients with PCS related to an increase in VWF(Ag):ADAMTS13 ratio and thrombin generation but not in α2-antiplasmin levels."
Article | Thread
Nature Communications
Transcriptional reprogramming from innate immune functions to a pro-thrombotic signature by monocytes in COVID-19 — Maher et al
"Transcriptionally, COVID-19 monocytes are characterized by enrichment of pathways involved in hemostasis, immunothrombosis, platelet aggregation and other accessory pathways to platelet activation and clot formation."
Article | Thread
Preprint
Outpatient treatment of Covid-19 with metformin, ivermectin, and fluvoxamine and the development of Long Covid over 10-month follow-up — Bramante et al
"There was a 42% relative decrease in the incidence of Long Covid in the metformin group compared to its blinded control in a secondary outcome of this randomized phase 3 trial."
Article | Thread
..........................
S4ME social media: Facebook, Twitter and YouTube
Happy New Year to all our readers News, articles and advocacy
Trial by Error by David Tuller Usual Suspects Say NICE Made Eight Errors, Nonsense, Says Committee Member Adam Lowe
David Tuller and NICE Committee member Adam Lowe provide a great "prebuttal" of the eight critiques of the ME/CFS NICE Guidelines in an upcoming publication by Professor Peter White et al.
Interview | Thread
ME/CFS articles in 2022 A compilation of the biggest ME/CFS articles from 2022 based on the news brief has been made with a total of 107 articles. Overviews from previous years show an upward trend in reporting on ME/CFS.
Thread
Petition - Long COVID Justice has started a petition asking the NIH RECOVER initiative to halt any Long Covid trials that focus on exercise therapy or cognitive behavioral therapy.
Petition | Thread
Long Covid Physio has partnered with FisioCamera to deliver educational videos about Long Covid which also will be translated into several languages. The videos are short accessible outlines of key aspects of Long Covid.
Videos | Thread
Fortune Well COVID isn't just infecting you - it could be reactivating viruses that have been dormant in your body for years
On a recent study finding that even mild Covid can cause activation of viruses leading to CFS symptoms. Dr. Azola from the long COVID clinic at Johns Hopkins University School of Medicina has seen several CFS patients who deteriorated after Covid.
Article | Thread
........................
Research news and commentary
UK DecodeME Back in action again in the New Year, we are all encouraged to spread the word so that as many adults as possible in the UK with an ME/CFS diagnosis can participate in the questionnaire part of the study which is already providing useful data. For those invited to donate DNA, spit kits will start being sent out again in January after the Christmas break.
Spread the word | Take part | Thread
ME/CFS Skeptic blog 2022: "Looking back at a year of ME/CFS research"
A thoughtful and clearly written review of the key ME/CFS research published in 2022. "The yield for 2022 is far from impressive but there were a couple of interesting ME/CFS studies that are worth discussing. A recurrent theme seems to be problems with the transport (or utilization) of oxygen into tissues. It will be interesting to see if this hypothesis will receive further support in 2023."
Article | Thread
UK Quadram Institute
"Dr Katharine Seton from the Quadram Institute has been awarded a Solve M.E. Ramsay Research Grant to better understand premature ageing of the immune system in people with ME/CFS."
Article | Thread
Fundraising - Dr Karl Morton's team at Oxford University, are seeking donations to support the continuation of their biomedical ME/CFS research projects.
Article | Thread
Research methodology
Some interesting articles posted in our methodology section this week:
"Science isn't storytelling - An article with dreadful advice for scientists reminds us that not everyone has learned the lessons from the replication crisis" by Stuart Richie.
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"The rise and fall of peer review - Why the greatest scientific experiment in history failed, and why that's a great thing" by Adam Mastroianni
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"Rating scales institutionalise a network of logical errors and conceptual problems in research practices: A rigorous analysis showing ways to tackle psychology’s crises" by Jana Uher
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Research
Archives of Epidemiology & Public Health Research
The Rise and Fall of the Psychosomatic Approach to MUS, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome - David Marks
A long and detailed study of the history of the development, and views of the major proponents, of the 'biopsychosocial model' as applied to ME/CFS. The article includes extensive analysis of the history, the involvement of funders, flaws in the research and the harm caused to patients. The article concludes:
"Patients with MUS/ME/CFS and their families have not been treated with the dignity, respect and care that is their human right. Patients with MUS/ME/CFS and their families could consider a class action legal case against the injuring parties. At the very least, an apology should be offered to the thousands of ME/ CFS and MUS patients and their families who have been detrimentally affected by this 34-year exercise in failed science."
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Long COVID research
J Thrombosis and Haemostasis
Analysis of thrombogenicity under flow reveals new insights into the prothrombotic state of patients with post-COVID syndrome — Constantinescu-Bercu et al
"Our results confirm a hypercoagulable state in patients with PCS related to an increase in VWF(Ag):ADAMTS13 ratio and thrombin generation but not in α2-antiplasmin levels."
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Nature Communications
Transcriptional reprogramming from innate immune functions to a pro-thrombotic signature by monocytes in COVID-19 — Maher et al
"Transcriptionally, COVID-19 monocytes are characterized by enrichment of pathways involved in hemostasis, immunothrombosis, platelet aggregation and other accessory pathways to platelet activation and clot formation."
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Preprint
Outpatient treatment of Covid-19 with metformin, ivermectin, and fluvoxamine and the development of Long Covid over 10-month follow-up — Bramante et al
"There was a 42% relative decrease in the incidence of Long Covid in the metformin group compared to its blinded control in a secondary outcome of this randomized phase 3 trial."
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News in Brief - January 2023
News in Brief - January 2023