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News in Brief - March 2022
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Week beginning 28th February 2022
News, articles and advocacy
USA The CDC has updated information about ME/CFS and Covid-19 on their main website for ME/CFS. There's a new section titled, "ME/CFS and COVID-19: What we know."
Website here Thread here
USA Senators Kaine, Markey and Duckworth have introduced a bill called the Comprehensive Access to Resources and Education (CARE) for Long COVID Act. This legislation would "centralize data about the experiences of people who have long covid, fund research into the effectiveness of treatments, and expand educational and community resources so people experiencing lingering symptoms know how to get help." The Solve ME group (see next item) was involved in this effort so this bill includes support for "ME/CFS, POTS, and other conditions known to be associated with viral triggers."
Press release here Thread here
Solve M.E. is asking folks in the US to contact their senators and ask them to support the CARE for Long COVID Act. An automated tool has been created to make this task easier.
Email here Tool here Thread here
Trial by Error by David Tuller The Usual Suspects Promote a Psychosocial "Research Agenda" for Long Covid
Journal of Psychosomatic Research just published an editorial titled "A research agenda for post-COVID-19 fatigue". Tuller picks apart this agenda written by among others Verveen, Lloyd, Moss-Morris, Wessely, Wyller, Knoop, or as Tuller describes them: "core members of the graded exercise therapy/cognitive behaviour therapy (GET/CBT) ideological brigades".
Article here Thread here
Norway Psychologist, author and ME sufferer Frøydis Lilledalen has written an opinion piece for the Journal for Norwegian Psychological Association asking whether moving focus away from symptoms might be more beneficial to the health care worker's needs than the patient.
Opinion piece here Thread here
Patient advocate Nina E. Steinkopf has written a critical blogpost titled "Doctoral dissertation casts doubt on ME" about an upcoming thesis on diagnostic criteria for CFS in adolescents questioning the validity of the CCC and SEID-criteria.
Blogpost here Thread here
Steinkopf has also written an opinion piece for a local newspaper asking whether a municipality's reluctance to use an institution with places for severe ME patients might be connected to their financial support of a planned study on the alternative method Lightning Process as ME treatment.
Opinion piece here Thread here
UK BJGP Life "Reflections on NICE, CFS/ME, and the Lightning Process" by GP and LP practitioner Anna Chellamuthu. This opinion piece is a highly biased promotion of LP which denigrates patients and the NICE guideline committee.
Professor Jonathan Edwards has written to the editor, Dr Lawson.
'The piece refers to NICE by insinuation without evidence. [...] The inuendo directed at patients is totally unprofessional. Material like this should not be permitted any more than anti-vaxx propaganda for Covid. The Lightning Process involves brainwashing and, as I indicted in my witness statement for NICE, use of such methods is unethical in the absence of meaningful evidence of efficacy.'
Thread with letter here
Following feedback to the journal, the editor decided to unpublish the article.
Statement here Thread here
Trial by Error by David Tuller "British GP Journals Retracts "Opinion" About Lightning Process Written By LP Practitioner"
Tuller provides a write-up of the whole story and would like to know who made the decision to publish the piece in the first place.
Article here Thread here
COFFI
The Collaborative On Fatigue Following Infection (COFFI) has a new website. It also seems that several new cohorts were added that are studying the long-term effects of COVID-19.
Website here Thread here
Mike's EU Marathons Mike Harley has a page about his multiple marathon running efforts to raise money for Invest in ME Research published in Runners World magazine. He will also be doing a podcast for the magazine.
Total raised so far £34,000 of his £42,000 target.
Thread with article here
..................
Useful resources
USA "Myalgic Encephalomyelitis - Diagnosis, Management and Current Research"
This educational webinar, recorded on September 22, 2021, and featuring Dr. Nina Muirhead, Dr. Lucinda Bateman, Dr. Luis Nacul and Patient Voice Hilary Robertson, is now available.
Video here Thread here
Lessons From Myalgic Encephalomyelitis for Long COVID
This online continuing education course, presented by Todd Davenport, is now available from MedBridge.
Course details here Thread here
.................
Research
Disability and Rehabilitation
“Evaluating case diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): toward an empirical case definition” by Conroy et al.
The research team of Leonard Jason evaluated the validity of case definitions by factor analyzing a large, international sample of ME/CFS symptom data. Although the results provided the most support for the Canadian Consensus Criteria, revisions to the criteria are recommended.
Article here Thread here
Antioxidants & Redox Signaling
"Does Dietary Coenzyme Q10 plus Selenium Supplementation Ameliorate Clinical Outcomes by Modulating Oxidative Stress and Inflammation in Individuals with ME/CFS?" by Castro-Marrero et al.
This small open label exploratory study over 8 weeks found some subjective improvements and improved antioxidant capacity but no change in other biological measures.
Article here Thread here
.................
Coming events
Prof. Brian Hughes will give a talk about the NICE ME guidelines on a webinar organised by the Norwegian ME Association. The webinar takes place 10th March at 14.00 (local time). The webinar will be recorded and available to all afterwards.
Registration here Thread here
Implications Of ME/CFS Case Definitions For Long Covid
This webinar, hosted by the US Action Working Group, and featuring Dr. Leonard Jason, is scheduled for March 16 at 4 p.m. EDT (1 p.m. PDT, 8 p.m. GMT).
Announcement here Registration here Thread here
World ME Day
The World ME Alliance, a collaborative of organisations from across the globe, is launching the theme #LearnFromME for the World ME Day on 12th May.
Article here Thread here
.................
Other items of interest
American Journal of Physical Medicine & Rehabilitation
“Post-acute COVID-19 Syndrome Negatively Impacts Physical Function, Cognitive Function, Health-Related Quality of Life, and Participation” by Tabacof et al.
This paper describes the symptoms of 156 patients attending the Mount Sinai’s post-acute COVID-19 syndrome clinic. The most common symptoms were fatigue, brain fog and headache.
Article here Thread here
Canadian Respiratory Journal
"Sustained Impairment in Cardiopulmonary Exercise Capacity Testing in Patients after COVID-19: A Single Center Experience" by Evers et al
30 patients with subjective limitation in exercise capacity (EC) were tested. The authors hypothesise that exercise capacity is affected by microcirculation and oxygen utilisation rather than cardiac problems.
Paper here Thread here
Toronto Star Thousands of Canadians may have acquired long-term impairment from COVID. They need support
Article here Thread here
The Washington Post What is long covid? Current understanding about risks, symptoms and recovery.
Article here Thread here
NPR How long COVID sheds light on other mysterious (and lonely) chronic illnesses
Article and audio interview here Thread here
...................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
USA The CDC has updated information about ME/CFS and Covid-19 on their main website for ME/CFS. There's a new section titled, "ME/CFS and COVID-19: What we know."
Website here Thread here
USA Senators Kaine, Markey and Duckworth have introduced a bill called the Comprehensive Access to Resources and Education (CARE) for Long COVID Act. This legislation would "centralize data about the experiences of people who have long covid, fund research into the effectiveness of treatments, and expand educational and community resources so people experiencing lingering symptoms know how to get help." The Solve ME group (see next item) was involved in this effort so this bill includes support for "ME/CFS, POTS, and other conditions known to be associated with viral triggers."
Press release here Thread here
Solve M.E. is asking folks in the US to contact their senators and ask them to support the CARE for Long COVID Act. An automated tool has been created to make this task easier.
Email here Tool here Thread here
Trial by Error by David Tuller The Usual Suspects Promote a Psychosocial "Research Agenda" for Long Covid
Journal of Psychosomatic Research just published an editorial titled "A research agenda for post-COVID-19 fatigue". Tuller picks apart this agenda written by among others Verveen, Lloyd, Moss-Morris, Wessely, Wyller, Knoop, or as Tuller describes them: "core members of the graded exercise therapy/cognitive behaviour therapy (GET/CBT) ideological brigades".
Article here Thread here
Norway Psychologist, author and ME sufferer Frøydis Lilledalen has written an opinion piece for the Journal for Norwegian Psychological Association asking whether moving focus away from symptoms might be more beneficial to the health care worker's needs than the patient.
Opinion piece here Thread here
Patient advocate Nina E. Steinkopf has written a critical blogpost titled "Doctoral dissertation casts doubt on ME" about an upcoming thesis on diagnostic criteria for CFS in adolescents questioning the validity of the CCC and SEID-criteria.
Blogpost here Thread here
Steinkopf has also written an opinion piece for a local newspaper asking whether a municipality's reluctance to use an institution with places for severe ME patients might be connected to their financial support of a planned study on the alternative method Lightning Process as ME treatment.
Opinion piece here Thread here
UK BJGP Life "Reflections on NICE, CFS/ME, and the Lightning Process" by GP and LP practitioner Anna Chellamuthu. This opinion piece is a highly biased promotion of LP which denigrates patients and the NICE guideline committee.
Professor Jonathan Edwards has written to the editor, Dr Lawson.
'The piece refers to NICE by insinuation without evidence. [...] The inuendo directed at patients is totally unprofessional. Material like this should not be permitted any more than anti-vaxx propaganda for Covid. The Lightning Process involves brainwashing and, as I indicted in my witness statement for NICE, use of such methods is unethical in the absence of meaningful evidence of efficacy.'
Thread with letter here
Following feedback to the journal, the editor decided to unpublish the article.
Statement here Thread here
Trial by Error by David Tuller "British GP Journals Retracts "Opinion" About Lightning Process Written By LP Practitioner"
Tuller provides a write-up of the whole story and would like to know who made the decision to publish the piece in the first place.
Article here Thread here
COFFI
The Collaborative On Fatigue Following Infection (COFFI) has a new website. It also seems that several new cohorts were added that are studying the long-term effects of COVID-19.
Website here Thread here
Mike's EU Marathons Mike Harley has a page about his multiple marathon running efforts to raise money for Invest in ME Research published in Runners World magazine. He will also be doing a podcast for the magazine.
Total raised so far £34,000 of his £42,000 target.
Thread with article here
..................
Useful resources
USA "Myalgic Encephalomyelitis - Diagnosis, Management and Current Research"
This educational webinar, recorded on September 22, 2021, and featuring Dr. Nina Muirhead, Dr. Lucinda Bateman, Dr. Luis Nacul and Patient Voice Hilary Robertson, is now available.
Video here Thread here
Lessons From Myalgic Encephalomyelitis for Long COVID
This online continuing education course, presented by Todd Davenport, is now available from MedBridge.
Course details here Thread here
.................
Research
Disability and Rehabilitation
“Evaluating case diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): toward an empirical case definition” by Conroy et al.
The research team of Leonard Jason evaluated the validity of case definitions by factor analyzing a large, international sample of ME/CFS symptom data. Although the results provided the most support for the Canadian Consensus Criteria, revisions to the criteria are recommended.
Article here Thread here
Antioxidants & Redox Signaling
"Does Dietary Coenzyme Q10 plus Selenium Supplementation Ameliorate Clinical Outcomes by Modulating Oxidative Stress and Inflammation in Individuals with ME/CFS?" by Castro-Marrero et al.
This small open label exploratory study over 8 weeks found some subjective improvements and improved antioxidant capacity but no change in other biological measures.
Article here Thread here
.................
Coming events
Prof. Brian Hughes will give a talk about the NICE ME guidelines on a webinar organised by the Norwegian ME Association. The webinar takes place 10th March at 14.00 (local time). The webinar will be recorded and available to all afterwards.
Registration here Thread here
Implications Of ME/CFS Case Definitions For Long Covid
This webinar, hosted by the US Action Working Group, and featuring Dr. Leonard Jason, is scheduled for March 16 at 4 p.m. EDT (1 p.m. PDT, 8 p.m. GMT).
Announcement here Registration here Thread here
World ME Day
The World ME Alliance, a collaborative of organisations from across the globe, is launching the theme #LearnFromME for the World ME Day on 12th May.
Article here Thread here
.................
Other items of interest
American Journal of Physical Medicine & Rehabilitation
“Post-acute COVID-19 Syndrome Negatively Impacts Physical Function, Cognitive Function, Health-Related Quality of Life, and Participation” by Tabacof et al.
This paper describes the symptoms of 156 patients attending the Mount Sinai’s post-acute COVID-19 syndrome clinic. The most common symptoms were fatigue, brain fog and headache.
Article here Thread here
Canadian Respiratory Journal
"Sustained Impairment in Cardiopulmonary Exercise Capacity Testing in Patients after COVID-19: A Single Center Experience" by Evers et al
30 patients with subjective limitation in exercise capacity (EC) were tested. The authors hypothesise that exercise capacity is affected by microcirculation and oxygen utilisation rather than cardiac problems.
Paper here Thread here
Toronto Star Thousands of Canadians may have acquired long-term impairment from COVID. They need support
Article here Thread here
The Washington Post What is long covid? Current understanding about risks, symptoms and recovery.
Article here Thread here
NPR How long COVID sheds light on other mysterious (and lonely) chronic illnesses
Article and audio interview here Thread here
...................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 7th March 2022
News, articles and advocacy
NIH Viruses on the Brain
An introduction to Dr. Avindra Nath and his research work starting with the AIDS pandemic in the 1980's and now on Covid-19. He says long-COVID reminded him of ME/CFS and warns doctors against dismissing symptoms that can't be objectively measured.
Article here Thread here
#MEAction continues their "Facets of ME" series, an educational feature which chooses a different aspect to discuss each month, with an article about Cognitive Dysfunction.
Article here Thread here
European ME Coalition (EMEC)
The European parliamentary interest group on ME/CFS has written two letters to the European Commission. One was addressed to Stella Kyriakides, European Commissioner for Health and Food Safety while the other was sent to the Directorate-General for Health and Food Safety (DG SANTE). Both letters highlight the lack of action taken after the adoption of the ME/CFS resolution by the European Parliament in June 2020.
Article here Thread here
New Zealand A practical approach to understanding, assessing and managing ME/CFS
Dr Cathy Stephenson's helpful webinar about ME/CFS for health professionals on the My Health Hub platform is now available to watch. NZ-based Health Professionals can claim CPD points.
Video here Thread here
Guardian Australia "How to move: exercising with chronic fatigue syndrome" by exercise physiologist, Sarah Comensoli. Although the author recognises that exercise is not helpful for many people with ME because of PEM, she claims, without valid evidence, that Pilates exercises and walking can help some people with recovery.
Article here Thread here
Chronic Illnesses in Women: ME/CFS and Migraine
Solve M.E. partnered with the Association for Migraine Disorders to host patients, researchers, and doctors for a discussion of ME/CFS, migraine disorders, and their impact on women's health. This webinar was recorded on March 8.
Video here Thread here
.................
Research news and recruiting
Professors Øystein Fluge and Karl Johan Tronstad were interviewed in the newspaper Klassekampen about their research into ME.
Article here (paywalled) Thread with summary here
MECFSnet: Cornell University, Center for Enervating NeuroImmune Disease
Video from this webinar, held on December 7, 2021, is now available. Dr. Maureen Hanson and colleagues provide an update on their research.
Video here Thread here
Open Medicine Foundation (OMF) announced that Jonas Bergquist, MD, PhD, will be OMF Chief Medical Officer. Also, David Systrom, MD, will join Wenzhong Xiao, PhD, as Co-Director of the newly named Ronald G. Tompkins Harvard ME/CFS Collaboration at the Harvard Affiliated Hospitals.
Announcement here Thread here
UK Nottingham University
ME Association article "Recruiting: Novel Dynamic Proteomics Approaches to Investigate the Systems Level Pathology of ME/CFS"
Researchers at Nottingham University are recruiting 10 women with ME/CFS and 10 healthy controls. The study involves 6 visits to the clinic and multiple tests.
Article here Thread here
Australia Deakin University
“Using ‘omics to unravel the pathophysiology and repurpose drugs to treat ME/CFS“ The CHROMIC study.
The study uses stem cells from patients and healthy controls transformed in the lab into muscle and brain cells. They plan to test the cells with stressors, and with drugs as possible treatments. One clinic visit including blood draw, and questionnaires.
Article here Thread here
DecodeME latest update 'DecodeME testing phase has launched!'
Some participants who opted to fill in paper rather than online questionnaires are participating and giving feedback in this first phase.
Article here Thread here
.................
Research
Science
"The immunology and immunopathology of COVID-19" by Merad, Iwasaki et al
The latest edition of Science is a special issue titled: COVID-19: 2 years on. This article reviews 2 years of immunology research. 'We discuss emerging understanding of differences in immune responses seen in those with and without Long Covid syndrome, also known as post-acute sequelae of SARS-CoV-2.'
Article here Thread here
Frontiers in Medicine - Pathology
"Perspective: Drawing on Findings From Critical Illness to Explain ME/CFS" by Stanculescu and Bergquist
Based on a long list of references the authors hypothesise about ME/CFS, including ideas about hypoperfusion, intestinal injury, and thyroid and pituitary issues.
Article here Thread here
British Journal of Social Work
FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What are the Implications for Social Services?” by Gullon-Scott & Long
This paper reports that an increasing number of families of children complex or less well-known conditions such as ME/CFS, are finding themselves being investigated for fabricated and induced illness (FII) by Social Services.
Article here Thread here
.................
Coming Events
NIH ME/CFS Advocacy Call A webinar is scheduled for March 28 from 3:00 – 4:00 pm ET. In addition to other research updates Benjamin H. Natelson, MD, will give a presentation on his ME/CFS research. NIH invites viewers to submit questions in advance. Send your questions to NIHME-CFSWorkingG@ninds.nih.gov by Thursday, March 17.
Announcement here Thread here
Solve M.E. Webinar: "ME/CFS: NO problem?"
April 7, 10:00 am PDT
Research suggests that ME/CFS patients have reduced Nitric Oxide (NO) production, affecting endothelial function. In this webinar Ramsay Researcher Dr. Francisco Westermeier will discuss his project which analyzes several biochemical pathways and metabolites responsible for NO production using samples from the UK ME/CFS Biobank.
Details here Thread here
.................
Other items of interest
ME/CFS Skeptic
The blog ME/CFS Skeptic discusses the remarkable testimony of Dr. Richard Renneker on the psychosomatic research on cancer in the 1950s. “We were biased researchers”, Renneker wrote. “Biased in the sense that we believed, on the basis of our preliminary study of cancer of the breast, that there was a psychological trigger factor in some cases.”
Article here Thread here
Time Researchers Are Getting Closer to Understanding Long COVID
Includes interview with patient advocate and ME sufferer Rivka Solomon who says she's grateful for the attention given to Long Covid but wishes other complex illnesses received same amount of attention and funding.
Article here Thread here
independent.ie The Indo Daily: 'There were mornings I woke up and I didn't know who I was' - Olga's long Covid story
Audio interview here Thread here
Washington Post Covid long-haulers face gruelling fights for disability benefits
Article here Thread here
The Pat Kenny Show Highlights Linda Dalton talks about her struggle against long COVID
Podcast here Thread here
The National Geographic Two years later, coronavirus evolution still surpasses experts. Here's why.
Article here Thread here
NBC News Long Covid patients, in search of relief, turn to private company
Article here Thread here
.................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
NIH Viruses on the Brain
An introduction to Dr. Avindra Nath and his research work starting with the AIDS pandemic in the 1980's and now on Covid-19. He says long-COVID reminded him of ME/CFS and warns doctors against dismissing symptoms that can't be objectively measured.
Article here Thread here
#MEAction continues their "Facets of ME" series, an educational feature which chooses a different aspect to discuss each month, with an article about Cognitive Dysfunction.
Article here Thread here
European ME Coalition (EMEC)
The European parliamentary interest group on ME/CFS has written two letters to the European Commission. One was addressed to Stella Kyriakides, European Commissioner for Health and Food Safety while the other was sent to the Directorate-General for Health and Food Safety (DG SANTE). Both letters highlight the lack of action taken after the adoption of the ME/CFS resolution by the European Parliament in June 2020.
Article here Thread here
New Zealand A practical approach to understanding, assessing and managing ME/CFS
Dr Cathy Stephenson's helpful webinar about ME/CFS for health professionals on the My Health Hub platform is now available to watch. NZ-based Health Professionals can claim CPD points.
Video here Thread here
Guardian Australia "How to move: exercising with chronic fatigue syndrome" by exercise physiologist, Sarah Comensoli. Although the author recognises that exercise is not helpful for many people with ME because of PEM, she claims, without valid evidence, that Pilates exercises and walking can help some people with recovery.
Article here Thread here
Chronic Illnesses in Women: ME/CFS and Migraine
Solve M.E. partnered with the Association for Migraine Disorders to host patients, researchers, and doctors for a discussion of ME/CFS, migraine disorders, and their impact on women's health. This webinar was recorded on March 8.
Video here Thread here
.................
Research news and recruiting
Professors Øystein Fluge and Karl Johan Tronstad were interviewed in the newspaper Klassekampen about their research into ME.
Article here (paywalled) Thread with summary here
MECFSnet: Cornell University, Center for Enervating NeuroImmune Disease
Video from this webinar, held on December 7, 2021, is now available. Dr. Maureen Hanson and colleagues provide an update on their research.
Video here Thread here
Open Medicine Foundation (OMF) announced that Jonas Bergquist, MD, PhD, will be OMF Chief Medical Officer. Also, David Systrom, MD, will join Wenzhong Xiao, PhD, as Co-Director of the newly named Ronald G. Tompkins Harvard ME/CFS Collaboration at the Harvard Affiliated Hospitals.
Announcement here Thread here
UK Nottingham University
ME Association article "Recruiting: Novel Dynamic Proteomics Approaches to Investigate the Systems Level Pathology of ME/CFS"
Researchers at Nottingham University are recruiting 10 women with ME/CFS and 10 healthy controls. The study involves 6 visits to the clinic and multiple tests.
Article here Thread here
Australia Deakin University
“Using ‘omics to unravel the pathophysiology and repurpose drugs to treat ME/CFS“ The CHROMIC study.
The study uses stem cells from patients and healthy controls transformed in the lab into muscle and brain cells. They plan to test the cells with stressors, and with drugs as possible treatments. One clinic visit including blood draw, and questionnaires.
Article here Thread here
DecodeME latest update 'DecodeME testing phase has launched!'
Some participants who opted to fill in paper rather than online questionnaires are participating and giving feedback in this first phase.
Article here Thread here
.................
Research
Science
"The immunology and immunopathology of COVID-19" by Merad, Iwasaki et al
The latest edition of Science is a special issue titled: COVID-19: 2 years on. This article reviews 2 years of immunology research. 'We discuss emerging understanding of differences in immune responses seen in those with and without Long Covid syndrome, also known as post-acute sequelae of SARS-CoV-2.'
Article here Thread here
Frontiers in Medicine - Pathology
"Perspective: Drawing on Findings From Critical Illness to Explain ME/CFS" by Stanculescu and Bergquist
Based on a long list of references the authors hypothesise about ME/CFS, including ideas about hypoperfusion, intestinal injury, and thyroid and pituitary issues.
Article here Thread here
British Journal of Social Work
FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What are the Implications for Social Services?” by Gullon-Scott & Long
This paper reports that an increasing number of families of children complex or less well-known conditions such as ME/CFS, are finding themselves being investigated for fabricated and induced illness (FII) by Social Services.
Article here Thread here
.................
Coming Events
NIH ME/CFS Advocacy Call A webinar is scheduled for March 28 from 3:00 – 4:00 pm ET. In addition to other research updates Benjamin H. Natelson, MD, will give a presentation on his ME/CFS research. NIH invites viewers to submit questions in advance. Send your questions to NIHME-CFSWorkingG@ninds.nih.gov by Thursday, March 17.
Announcement here Thread here
Solve M.E. Webinar: "ME/CFS: NO problem?"
April 7, 10:00 am PDT
Research suggests that ME/CFS patients have reduced Nitric Oxide (NO) production, affecting endothelial function. In this webinar Ramsay Researcher Dr. Francisco Westermeier will discuss his project which analyzes several biochemical pathways and metabolites responsible for NO production using samples from the UK ME/CFS Biobank.
Details here Thread here
.................
Other items of interest
ME/CFS Skeptic
The blog ME/CFS Skeptic discusses the remarkable testimony of Dr. Richard Renneker on the psychosomatic research on cancer in the 1950s. “We were biased researchers”, Renneker wrote. “Biased in the sense that we believed, on the basis of our preliminary study of cancer of the breast, that there was a psychological trigger factor in some cases.”
Article here Thread here
Time Researchers Are Getting Closer to Understanding Long COVID
Includes interview with patient advocate and ME sufferer Rivka Solomon who says she's grateful for the attention given to Long Covid but wishes other complex illnesses received same amount of attention and funding.
Article here Thread here
independent.ie The Indo Daily: 'There were mornings I woke up and I didn't know who I was' - Olga's long Covid story
Audio interview here Thread here
Washington Post Covid long-haulers face gruelling fights for disability benefits
Article here Thread here
The Pat Kenny Show Highlights Linda Dalton talks about her struggle against long COVID
Podcast here Thread here
The National Geographic Two years later, coronavirus evolution still surpasses experts. Here's why.
Article here Thread here
NBC News Long Covid patients, in search of relief, turn to private company
Article here Thread here
.................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 14th March 2022
News, articles and advocacy
UK NICE Guideline implementation statement. Representatives of stakeholders who attended the roundtable last October before publication of the guideline have been invited to comment on an implementation statement intended to advise health service commissioners.
Thread with statement here
Norwegian research project on care services and ME (Tjenesten og Meg)
The newspaper Klassekampen has interviewed the two sociologists and researchers Line Melby and Anne Kielland about their ongoing research project on the care services and ME. They say that 70% deteriorate after a stay at a rehabilitation center and that more than 90% deteriorate after work assessment. "ME patients are singled out as a particular group due to lack of objective, medical markers. It seems this is a reason to legitimise the stigma".
Article here (paywalled) Thread here
Anne Kielland and Arne Backer Grønningsæter from the same research project have written an opinion piece providing examples of psychological and symbolic violence from care services and traumatised behaviour from ME patients as a consequence. They are critical of whether a planned research project on the alternative method Lightning Process can manage to uphold the Helsinki declaration about voluntary participation in research, when it is the Norwegian Labour and Welfare Administration who will be recruiting patients for the study.
Opinion piece here Thread here
Forskning.no What is happening in the body to those with ME?
A research news site has written a thorough overview of research into ME and current hypotheses for the disease. Professor Karl Johan Tronstad says: ME is to a high extent under-researched. That's a major societal problem and it's completely irresponsible to not try to figure this out"
Article here (in Norwegian) Thread here
Scottish Legal News "David J Black: PACE-gate. Have we been Waddelled?" This second of a pair of articles on accountability covers the role of BPS supporters in the 2007 NICE guideline, some of the history of PACE and other ME research and access to DWP benefits, including the roles of Wessely, Waddell, Aylward, Crawley and Chalder. 'David J Black’s forthcoming book The Great Psycho Heist. Is the ‘biggest medical scandal of the 21st century’ about to go viral in the wake of Long Covid? is currently in preparation.'
Article here Thread here
A Life Hidden In Memory of My Friends
Naomi Whittingham is honouring the memory of Emily Collingridge and Merryn Crofts. "I give thanks for all they brought to the world as a whole and to me personally. And I count the precious years that they and their families have lost.
They will never be forgotten."
Article here Thread here
The Michigan Daily Michigan Medicine needs to address post-viral illness
Great opinion piece by Glenn Tucker (patient with ME/CFS) discussing the many obstacles ME/CFS patients face when seeking diagnosis and treatment. He also mentions ME/CFS onset after COVID infection and says, "The time has come to create a comprehensive, proactive post-viral illness policy."
Article here Thread here
Australia Petition "Call For Change - Submission to the Australian Parliament and the Disability Royal Commission into Violence, Neglect, Abuse and Exploitation on behalf of the local and international ME and CFS community." Calls for the immediate removal of harmful and outdated CBT and GET treatments.
Petition here Thread here
Australia 7 News
"Aussie ‘ray of sunshine’ left in ‘zombie-like state’ shares agony of being ‘unable to say goodbye’" Sympathetic article about 20 year old Ella Engel who has very severe ME. “There were a lot of rabbit holes that specialists had us going down and if someone had diagnosed us with ME/CFS much earlier, she probably wouldn’t be this severe now.”
Article here Thread here
.............
Useful resources
NICE ME/CFS Guideline webinar Professor Brian Hughes gave a talk to the Norwegian ME Association: "The New NICE Guideline for ME/CFS(2021): Following the Science"
In this excellent talk, Hughes explains the process used by NICE to review the evidence on ME/CFS treatments, emphasising that this was not influenced by patients, as claimed by some opponents. He describes the key points on diagnosis and treatment, the paradigm shift in understanding of ME/CFS as a physical, not a psychological disease, and why some clinicians will always oppose changes in practice, even when they are in line with the latest scientific evidence.
Video here (1 hour) Thread here
..................
Coming events
UK Parliament
APPG ME Association article "Invite your MP to the Next Meeting of The APPG on M.E." The AGM of the all party parliamentary group on ME/CFS will be on zoom on Tuesday 29 March 10:00 – 10:30. The article provides a template email for contacting your MP to encourage them to attend.
Article here Thread here
Long Covid debate There will be a debate in the UK House of Commons on Thursday 24th March from about 2.30pm. 'General debate on the impact of Long Covid on the UK work force.'
Thread here
.................
Fundraising
Dr Keith Geraghty An appeal has been launched to part fund Dr Geraghty's position as a research fellow at Manchester University and a part time associate to help with his work. He expects to use his time to continue his ME/CFS research and on communication and advocacy. Target £25,000. The appeal runs until the end of April.
Donate here Thread here
................
Research news
UK DecodeME "Why do we need a genetic study like DecodeME?"
This short article for British Science Week explains that biological differences found do not necessarily explain the causes of ME/CFS, whereas 'any DNA differences associated with ME/CFS must play a part in causing the illness, rather than being a downstream effect of it.' DNA differences can point to causes and give clues to possible treatments.
Patient recruitment has started, and first results are expected next year.
Article here Thread here
UK - Action for ME "Breakthrough-ME: our plan to rapidly grow research"
'Partnering with Prof Chris Ponting (Medical Research Council’s Human Genetics Unit and Principal Investigator on DecodeME), Action for M.E. will: Host a genetics research summit to stimulate new studies. Establish the first Genetics Centre of Excellence.' This latter will involve a virtual network of experts to work with people with ME/CFS to build on the findings of DecodeME.
Article here Thread here
Narrative inquiry exploring the school experiences of teenagers with ME/CFS
Marianna Lewis from the University of Bristol is researching the school experiences of teenagers with ME/CFS for her doctoral thesis. The study is still recruiting. Lewis posted more information on the S4ME forum and is interested in feedback about the project.
Thread here
...................
Research
PLOS One
“Cardiopulmonary, metabolic, and perceptual responses during exercise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Multi-site Clinical Assessment of ME/CFS (MCAM) sub-study” by Cook et al.
This study reports the data on exercise testing of more than 200 patients enrolled in the MCAM study. When patients and controls were matched for fitness, many of the previously reported differences on VO2max and maximal heart rate disappeared. There was, however, inefficient exercise ventilation in ME/CFS patients compared to controls.
Article here Thread here
MDPI - Nutrients
"Role of Creatine Supplementation in Conditions Involving Mitochondrial Dysfunction: A Narrative Review" Marshall et al
The authors include ME/CFS and Long Covid in conditions they suggest may be helped by creatine supplementation, but research is needed.
Article here Thread here
............
Other items of interest
The Washington Post Long covid could change the way researchers study chronic illness
Excellent article where patient advocates and experts are worried about the lack of information and transparency from the NIH's Long Covid initiative Recover. The article provides some of the history of ME/CFS as an example of previous missteps and resistance to working with patients. Among those interviewed are JD Davids, Dr. Stuart Katz, Maya Dusenbery, Dr. Lucinda Bateman, Alison Sbrana, Dr. Tony Komaroff, Dr. Nisreen Alwan
Article here (paywalled) Thread here
ABC Australia How long COVID is putting the spotlight on chronic fatigue syndrome
"Long COVID will impact tens of thousands of Australians. So how do we manage it? We could take a hint from the 250 thousand people living with chronic fatigue syndrome". Guests: Anne Wilson, CEO Emerge Australia and Dr. David Putrino, Associate Professor of Rehabilitation and Human Performance, Mount Sinai Health System. Duration: 20 minutes.
Audio segment here Thread here
BBC Long Covid revisited
A new interview with three Long Covid sufferers one year after previous interview. None of them have recovered. Dr. David Strain from the NHS Long Covid Taskforce is also interviewed and talks about Long Covid and ME. Duration: 27 minutes.
Program here Thread here
ABC News Researchers probe 'astounding' links between long-COVID and chronic fatigue syndrome
Interviews Professor Sonya Marshall-Gradisnik who says the overlap between ME/CFS and long Covid is astounding. Further that they've identified faulty calcium ion channels in ME/CFS patients and are now looking for the same in long Covid patients.
Article here Thread here
Medscape Covid's 'Silver Lining': Research Breakthroughs for Chronic Disease, Cancer, and the Common Flu
Includes quotes from Dr. Avindra Nath that research is suggesting Long Covid and CFS are basically the same and from Jarred Younger who says any promising Long Covid treatment will immediately be trialed in ME/CFS. Lauren Nichols (Body Politic), Dr. David Systrom and Emily Taylor (Solve M.E) talk about the struggle for proper recognition of the conditions.
Article here Thread here
ABC News AUDIO: Doctors report long COVID and MECFS similarities
10 minutes interview with Dr. Richard Schloeffel from Emerge Australia.
Interview here Thread here
MITSloan Management Review How Managers Can Support Employees With Long COVID by Fiona Lowenstein
Article here Thread here
The Sunday Times Long Covid: The nightmare a million of us still can't shake off
Article here (paywalled) Twitter summary here Thread here
ScienceFriday What We're Learning About Long Covid Symptoms And Their Causes. Guests: Hannah Davis and David Putrino.
Audio program here Thread here
SciShow Long COVID and Post-infection Syndromes: What We Know So Far
YouTube video here Thread here
Metro.co.uk The stigma of Long Covid: Why people don't believe it's real
Article here Thread here
The New York Times Opinion piece: What Long Covid Shows Us About the Limits of Medicine
Article here Thread here
MPR News For some kids, long COVID-19 is harder than having the virus
Article here Thread here
............
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
UK NICE Guideline implementation statement. Representatives of stakeholders who attended the roundtable last October before publication of the guideline have been invited to comment on an implementation statement intended to advise health service commissioners.
Thread with statement here
Norwegian research project on care services and ME (Tjenesten og Meg)
The newspaper Klassekampen has interviewed the two sociologists and researchers Line Melby and Anne Kielland about their ongoing research project on the care services and ME. They say that 70% deteriorate after a stay at a rehabilitation center and that more than 90% deteriorate after work assessment. "ME patients are singled out as a particular group due to lack of objective, medical markers. It seems this is a reason to legitimise the stigma".
Article here (paywalled) Thread here
Anne Kielland and Arne Backer Grønningsæter from the same research project have written an opinion piece providing examples of psychological and symbolic violence from care services and traumatised behaviour from ME patients as a consequence. They are critical of whether a planned research project on the alternative method Lightning Process can manage to uphold the Helsinki declaration about voluntary participation in research, when it is the Norwegian Labour and Welfare Administration who will be recruiting patients for the study.
Opinion piece here Thread here
Forskning.no What is happening in the body to those with ME?
A research news site has written a thorough overview of research into ME and current hypotheses for the disease. Professor Karl Johan Tronstad says: ME is to a high extent under-researched. That's a major societal problem and it's completely irresponsible to not try to figure this out"
Article here (in Norwegian) Thread here
Scottish Legal News "David J Black: PACE-gate. Have we been Waddelled?" This second of a pair of articles on accountability covers the role of BPS supporters in the 2007 NICE guideline, some of the history of PACE and other ME research and access to DWP benefits, including the roles of Wessely, Waddell, Aylward, Crawley and Chalder. 'David J Black’s forthcoming book The Great Psycho Heist. Is the ‘biggest medical scandal of the 21st century’ about to go viral in the wake of Long Covid? is currently in preparation.'
Article here Thread here
A Life Hidden In Memory of My Friends
Naomi Whittingham is honouring the memory of Emily Collingridge and Merryn Crofts. "I give thanks for all they brought to the world as a whole and to me personally. And I count the precious years that they and their families have lost.
They will never be forgotten."
Article here Thread here
The Michigan Daily Michigan Medicine needs to address post-viral illness
Great opinion piece by Glenn Tucker (patient with ME/CFS) discussing the many obstacles ME/CFS patients face when seeking diagnosis and treatment. He also mentions ME/CFS onset after COVID infection and says, "The time has come to create a comprehensive, proactive post-viral illness policy."
Article here Thread here
Australia Petition "Call For Change - Submission to the Australian Parliament and the Disability Royal Commission into Violence, Neglect, Abuse and Exploitation on behalf of the local and international ME and CFS community." Calls for the immediate removal of harmful and outdated CBT and GET treatments.
Petition here Thread here
Australia 7 News
"Aussie ‘ray of sunshine’ left in ‘zombie-like state’ shares agony of being ‘unable to say goodbye’" Sympathetic article about 20 year old Ella Engel who has very severe ME. “There were a lot of rabbit holes that specialists had us going down and if someone had diagnosed us with ME/CFS much earlier, she probably wouldn’t be this severe now.”
Article here Thread here
.............
Useful resources
NICE ME/CFS Guideline webinar Professor Brian Hughes gave a talk to the Norwegian ME Association: "The New NICE Guideline for ME/CFS(2021): Following the Science"
In this excellent talk, Hughes explains the process used by NICE to review the evidence on ME/CFS treatments, emphasising that this was not influenced by patients, as claimed by some opponents. He describes the key points on diagnosis and treatment, the paradigm shift in understanding of ME/CFS as a physical, not a psychological disease, and why some clinicians will always oppose changes in practice, even when they are in line with the latest scientific evidence.
Video here (1 hour) Thread here
..................
Coming events
UK Parliament
APPG ME Association article "Invite your MP to the Next Meeting of The APPG on M.E." The AGM of the all party parliamentary group on ME/CFS will be on zoom on Tuesday 29 March 10:00 – 10:30. The article provides a template email for contacting your MP to encourage them to attend.
Article here Thread here
Long Covid debate There will be a debate in the UK House of Commons on Thursday 24th March from about 2.30pm. 'General debate on the impact of Long Covid on the UK work force.'
Thread here
.................
Fundraising
Dr Keith Geraghty An appeal has been launched to part fund Dr Geraghty's position as a research fellow at Manchester University and a part time associate to help with his work. He expects to use his time to continue his ME/CFS research and on communication and advocacy. Target £25,000. The appeal runs until the end of April.
Donate here Thread here
................
Research news
UK DecodeME "Why do we need a genetic study like DecodeME?"
This short article for British Science Week explains that biological differences found do not necessarily explain the causes of ME/CFS, whereas 'any DNA differences associated with ME/CFS must play a part in causing the illness, rather than being a downstream effect of it.' DNA differences can point to causes and give clues to possible treatments.
Patient recruitment has started, and first results are expected next year.
Article here Thread here
UK - Action for ME "Breakthrough-ME: our plan to rapidly grow research"
'Partnering with Prof Chris Ponting (Medical Research Council’s Human Genetics Unit and Principal Investigator on DecodeME), Action for M.E. will: Host a genetics research summit to stimulate new studies. Establish the first Genetics Centre of Excellence.' This latter will involve a virtual network of experts to work with people with ME/CFS to build on the findings of DecodeME.
Article here Thread here
Narrative inquiry exploring the school experiences of teenagers with ME/CFS
Marianna Lewis from the University of Bristol is researching the school experiences of teenagers with ME/CFS for her doctoral thesis. The study is still recruiting. Lewis posted more information on the S4ME forum and is interested in feedback about the project.
Thread here
...................
Research
PLOS One
“Cardiopulmonary, metabolic, and perceptual responses during exercise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Multi-site Clinical Assessment of ME/CFS (MCAM) sub-study” by Cook et al.
This study reports the data on exercise testing of more than 200 patients enrolled in the MCAM study. When patients and controls were matched for fitness, many of the previously reported differences on VO2max and maximal heart rate disappeared. There was, however, inefficient exercise ventilation in ME/CFS patients compared to controls.
Article here Thread here
MDPI - Nutrients
"Role of Creatine Supplementation in Conditions Involving Mitochondrial Dysfunction: A Narrative Review" Marshall et al
The authors include ME/CFS and Long Covid in conditions they suggest may be helped by creatine supplementation, but research is needed.
Article here Thread here
............
Other items of interest
The Washington Post Long covid could change the way researchers study chronic illness
Excellent article where patient advocates and experts are worried about the lack of information and transparency from the NIH's Long Covid initiative Recover. The article provides some of the history of ME/CFS as an example of previous missteps and resistance to working with patients. Among those interviewed are JD Davids, Dr. Stuart Katz, Maya Dusenbery, Dr. Lucinda Bateman, Alison Sbrana, Dr. Tony Komaroff, Dr. Nisreen Alwan
Article here (paywalled) Thread here
ABC Australia How long COVID is putting the spotlight on chronic fatigue syndrome
"Long COVID will impact tens of thousands of Australians. So how do we manage it? We could take a hint from the 250 thousand people living with chronic fatigue syndrome". Guests: Anne Wilson, CEO Emerge Australia and Dr. David Putrino, Associate Professor of Rehabilitation and Human Performance, Mount Sinai Health System. Duration: 20 minutes.
Audio segment here Thread here
BBC Long Covid revisited
A new interview with three Long Covid sufferers one year after previous interview. None of them have recovered. Dr. David Strain from the NHS Long Covid Taskforce is also interviewed and talks about Long Covid and ME. Duration: 27 minutes.
Program here Thread here
ABC News Researchers probe 'astounding' links between long-COVID and chronic fatigue syndrome
Interviews Professor Sonya Marshall-Gradisnik who says the overlap between ME/CFS and long Covid is astounding. Further that they've identified faulty calcium ion channels in ME/CFS patients and are now looking for the same in long Covid patients.
Article here Thread here
Medscape Covid's 'Silver Lining': Research Breakthroughs for Chronic Disease, Cancer, and the Common Flu
Includes quotes from Dr. Avindra Nath that research is suggesting Long Covid and CFS are basically the same and from Jarred Younger who says any promising Long Covid treatment will immediately be trialed in ME/CFS. Lauren Nichols (Body Politic), Dr. David Systrom and Emily Taylor (Solve M.E) talk about the struggle for proper recognition of the conditions.
Article here Thread here
ABC News AUDIO: Doctors report long COVID and MECFS similarities
10 minutes interview with Dr. Richard Schloeffel from Emerge Australia.
Interview here Thread here
MITSloan Management Review How Managers Can Support Employees With Long COVID by Fiona Lowenstein
Article here Thread here
The Sunday Times Long Covid: The nightmare a million of us still can't shake off
Article here (paywalled) Twitter summary here Thread here
ScienceFriday What We're Learning About Long Covid Symptoms And Their Causes. Guests: Hannah Davis and David Putrino.
Audio program here Thread here
SciShow Long COVID and Post-infection Syndromes: What We Know So Far
YouTube video here Thread here
Metro.co.uk The stigma of Long Covid: Why people don't believe it's real
Article here Thread here
The New York Times Opinion piece: What Long Covid Shows Us About the Limits of Medicine
Article here Thread here
MPR News For some kids, long COVID-19 is harder than having the virus
Article here Thread here
............
S4ME social media: Facebook, Twitter and YouTube
Last edited:
Week beginning 21 March 2022
News, articles and advocacy
Lightning Process - patients' experiences
A website where ME patients are sharing their negative experiences with the commercial training, the Lightning Process, was launched in Norway in February. The stories have been translated into English and give a shocking insight into this controversial and damaging method.
“After approximately 6 months of doing the LP method, I was so ill that I couldn’t take it any more. I had to use a walker to get to the bathroom. I needed help with everything.”
“I ended up completely brainwashed. After all it was I who “did” ME.”
“We had to sign that the process had worked, and to not tell about the method to others. I did not receive a copy of this. I got much worse after the course, and now I am housebound.”
“During my last conversation with her, when I was still struggling, I was told: “You just don’t want to get better, do you?”“
Website here Thread here
New Zealand Two Lightning Process practitioners have been invited to run workshops at a GP continuing education conference.
Thread with details here
CODA
“Physicians with long Covid confront a medical establishment eager to classify their illness as psychological”
David Tuller describes how physicians with Long COVID are being dismissed by their peers and how this reminds him of what he observed in the field of ME/CFS.
Article here Thread here
USA WebMD - "Chronic Fatigue Syndrome: The Need to Raise Awareness"
A new study by the CDC and Medscape shows the widespread lack of awareness about ME/CFS. “Of all the people who completed the survey, only 46% had ever heard about ME/CFS," says Elizabeth Unger, MD, PhD, chief of the CDC's Chronic Viral Diseases Branch.
Article here Thread here
Scottish Legal News "David J Black: Welcome to the Machine"
Black exposes some of the history of how the BPS model came to dominate in the UK, with the help of the Science Media Centre, in which Simon Wessely had a leading role, orchestrating the media strategy including the characterisation of people with ME as dangerous militants. He suggests Long Covid research will help to change the narrative.
Article here Thread here
Edzard Ernst MD blog "‘BEYOND THE HYPE’ – 20 years of the Science Media Centre"
Ernst reviews uncritically a book by Fiona Fox, head of the UK Science Media Centre. Responses to the blog point out the harm the SMC has done to people with ME/CFS by promoting trials such as PACE, and creating and fostering the 'patients are dangerous militants' false narrative.
Article here Thread here
Spain Article in the newspaper El País about the Spanish musician Jorge and his partner Ingrid who suffers from ME, and how the disease has affected their lives.
Article here Thread here
Norway A heartbreaking article about severe ME sufferer Aurora's fight with local bureaucracy who refuse to provide her with the help she needs.
Article here Thread here
.............
Research
Science Direct - Brain, Behavior and Immunity
"Genetic association study in ME/CFS identifies several potential risk loci" by Hajdarevic et al
The authors used combined data from 3 cohorts totalling over 2500 people with ME/CFS in a genome study. Some modest associations were found that will need to be replicated in much larger studies including DecodeME. One possibility is the TPPP gene which is 'expressed in brain tissues'.
Paper here Thread here
Journal of translational medicine
"Endothelial dysfunction and altered endothelial biomarkers in patients with post-COVID-19 syndrome and ME/CFS" by Haffke, Scheibenbogen et al
Endothelial dysfunction was found in about one third of small samples of people with ME/CFS and with post covid, and not in any of the matched healthy controls. 'Different associations of the RHI with clinical parameters as well as varying biomarker profiles may suggest distinct pathomechanisms among patient subgroups.'
Paper here Thread here
Frontiers in Immunology
"Comparative Analysis of Extracellular Vesicles in Patients with Severe and Mild ME/CFS" by Bonilla et al.
This small study of 10 mild and 10 severe patients found 'a significant correlation between severe ME/CFS and levels of EVs bearing the B cell marker CD19 and the platelet marker CD41a, though these changes were not significant after correction for multiple comparisons. These findings point to potential dysregulation of B cell and platelet activation or homeostasis in ME/CFS, which warrants validation in a replication cohort and further exploration of potential mechanisms underlying the association.'
Paper here Thread here
PLOS One
“Incidence of Lyme disease in the United Kingdom and association with fatigue: A population-based, historical cohort study” by Brellier et al.
The authors of this study, which include researchers from the ME/CFS biobank - used a database of UK primary care patients. People who had Lyme disease were approximately 2 times more likely to have been diagnosed with fatigue-related symptoms and approximately 10 times more likely to have been diagnosed with ME/CFS.
Article here Thread here
............
Employment opportunity
UK - Action for ME - Research Director
A full time senior post in the organisation with a £50,000 salary.
Closing date for applications: Wednesday 13th April 2022 at 5 pm.
Details here Thread here
..............
Coming Events
#MEAction and Body Politic will host an online panel discussion of the film Unrest on Sunday, March 27, at 10 am PT (1 pm ET / 6 pm BST). The relationship between Long Covid & ME/CFS will be discussed from a "clinical, patient, & societal perspective." Tickets required ("pay what you can" - $10 suggested).
Tickets here Thread here
..............
Other items of interest
NBC New York 'New Public Health Dilemma': Long COVID Symptoms, Risks & Unknowns
Article here Thread here
RTÉ Radio 1 Living with Long Covid
Radio program here Thread here
............
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
Lightning Process - patients' experiences
A website where ME patients are sharing their negative experiences with the commercial training, the Lightning Process, was launched in Norway in February. The stories have been translated into English and give a shocking insight into this controversial and damaging method.
“After approximately 6 months of doing the LP method, I was so ill that I couldn’t take it any more. I had to use a walker to get to the bathroom. I needed help with everything.”
“I ended up completely brainwashed. After all it was I who “did” ME.”
“We had to sign that the process had worked, and to not tell about the method to others. I did not receive a copy of this. I got much worse after the course, and now I am housebound.”
“During my last conversation with her, when I was still struggling, I was told: “You just don’t want to get better, do you?”“
Website here Thread here
New Zealand Two Lightning Process practitioners have been invited to run workshops at a GP continuing education conference.
Thread with details here
CODA
“Physicians with long Covid confront a medical establishment eager to classify their illness as psychological”
David Tuller describes how physicians with Long COVID are being dismissed by their peers and how this reminds him of what he observed in the field of ME/CFS.
Article here Thread here
USA WebMD - "Chronic Fatigue Syndrome: The Need to Raise Awareness"
A new study by the CDC and Medscape shows the widespread lack of awareness about ME/CFS. “Of all the people who completed the survey, only 46% had ever heard about ME/CFS," says Elizabeth Unger, MD, PhD, chief of the CDC's Chronic Viral Diseases Branch.
Article here Thread here
Scottish Legal News "David J Black: Welcome to the Machine"
Black exposes some of the history of how the BPS model came to dominate in the UK, with the help of the Science Media Centre, in which Simon Wessely had a leading role, orchestrating the media strategy including the characterisation of people with ME as dangerous militants. He suggests Long Covid research will help to change the narrative.
Article here Thread here
Edzard Ernst MD blog "‘BEYOND THE HYPE’ – 20 years of the Science Media Centre"
Ernst reviews uncritically a book by Fiona Fox, head of the UK Science Media Centre. Responses to the blog point out the harm the SMC has done to people with ME/CFS by promoting trials such as PACE, and creating and fostering the 'patients are dangerous militants' false narrative.
Article here Thread here
Spain Article in the newspaper El País about the Spanish musician Jorge and his partner Ingrid who suffers from ME, and how the disease has affected their lives.
Article here Thread here
Norway A heartbreaking article about severe ME sufferer Aurora's fight with local bureaucracy who refuse to provide her with the help she needs.
Article here Thread here
.............
Research
Science Direct - Brain, Behavior and Immunity
"Genetic association study in ME/CFS identifies several potential risk loci" by Hajdarevic et al
The authors used combined data from 3 cohorts totalling over 2500 people with ME/CFS in a genome study. Some modest associations were found that will need to be replicated in much larger studies including DecodeME. One possibility is the TPPP gene which is 'expressed in brain tissues'.
Paper here Thread here
Journal of translational medicine
"Endothelial dysfunction and altered endothelial biomarkers in patients with post-COVID-19 syndrome and ME/CFS" by Haffke, Scheibenbogen et al
Endothelial dysfunction was found in about one third of small samples of people with ME/CFS and with post covid, and not in any of the matched healthy controls. 'Different associations of the RHI with clinical parameters as well as varying biomarker profiles may suggest distinct pathomechanisms among patient subgroups.'
Paper here Thread here
Frontiers in Immunology
"Comparative Analysis of Extracellular Vesicles in Patients with Severe and Mild ME/CFS" by Bonilla et al.
This small study of 10 mild and 10 severe patients found 'a significant correlation between severe ME/CFS and levels of EVs bearing the B cell marker CD19 and the platelet marker CD41a, though these changes were not significant after correction for multiple comparisons. These findings point to potential dysregulation of B cell and platelet activation or homeostasis in ME/CFS, which warrants validation in a replication cohort and further exploration of potential mechanisms underlying the association.'
Paper here Thread here
PLOS One
“Incidence of Lyme disease in the United Kingdom and association with fatigue: A population-based, historical cohort study” by Brellier et al.
The authors of this study, which include researchers from the ME/CFS biobank - used a database of UK primary care patients. People who had Lyme disease were approximately 2 times more likely to have been diagnosed with fatigue-related symptoms and approximately 10 times more likely to have been diagnosed with ME/CFS.
Article here Thread here
............
Employment opportunity
UK - Action for ME - Research Director
A full time senior post in the organisation with a £50,000 salary.
Closing date for applications: Wednesday 13th April 2022 at 5 pm.
Details here Thread here
..............
Coming Events
#MEAction and Body Politic will host an online panel discussion of the film Unrest on Sunday, March 27, at 10 am PT (1 pm ET / 6 pm BST). The relationship between Long Covid & ME/CFS will be discussed from a "clinical, patient, & societal perspective." Tickets required ("pay what you can" - $10 suggested).
Tickets here Thread here
..............
Other items of interest
NBC New York 'New Public Health Dilemma': Long COVID Symptoms, Risks & Unknowns
Article here Thread here
RTÉ Radio 1 Living with Long Covid
Radio program here Thread here
............
S4ME social media: Facebook, Twitter and YouTube
Week beginning 28th March 2022
News, articles and advocacy
ScienceNorway What is going on in the bodies of ME/CFS patients?
English translation of a thorough summary of current research into ME. Includes interviews with several researchers including Prof. Tronstad who says: "ME/CFS is hugely under-researched. It's a major social problem, and it's completely irresponsible not to try to figure it out".
Article here Thread here
Norway The newspaper Dagsavisen is following up a previous article where the severe ME sufferer Aurora after a long battle is still left without adequate help. Social worker and Parliament member Marian Hussein has asked the Minister of Health and Care Services to answer how ME patients should be ensured a better health service. Hussain says the way ME patients are treated shows we have a human view that is not worthy of our time.
Article here Thread here
Independent Australia "Disability advocates condemn neglect of chronic fatigue syndrome sufferers" by Natalie Hodgins.
The article describes the harm done to people who are still being prescribed CBT and GET as advised by the GP organisation. This advice also leads to people being denied disability support. Long Covid patients are being similarly harmed. A petition will be submitted to the Australian Government and the Disability Royal Commission at the end of this month.
Article here Thread here
Sydney Morning Herald ‘Crushing exhaustion’: Long COVID takes toll on young patients. A clinic treating Long Covid patients says its patients 'will participate in a rehabilitation program, including a graded exercise program to build up endurance and strength and psychological treatments for fatigue.'
Article here Thread here
News.com.au 'Don't have this treatment for long Covid'
ME/CFS sufferer Alice Rumble tells how she deteriorated following treatment with GET at a fatigue clinic in Australia and that the Royal Australian College of GP's continues to recommend GET and CBT for ME despite the US and UK having removed these treatments from their guidelines. "As Australia faces the reality of a large emerging cohort of people succumbing to long Covid, it is essential we ensure they are not harmed by dangerous, outdated treatments".
Article here Thread here
Canada - Montreal Gazette The link between long COVID and a medical mystery
Claudine Prud'homme is a member of the scientific committed of the Association Québécoise de l’Encéphalomyélite Myalgique (AQEM) which has tried to raise the alarm about connections between Long Covid and ME/CFS but feel they've been ignored. Alain Moreau says "We weren't equipped before the pandemic to take care of people with ME/CFS, so imagine now". Simon Décary says: "We know there's a link, because we have the evidence of the overlap of the clinical symptoms. But is it exactly the same biological process? That we don't know yet".
Article here Thread here
...........
Fundraising
USA The University of California, Berkeley, is crowdfunding to support the post of Dr David Tuller during the month of April with a goal of $67,000. "I am once again seeking funds to continue my work on ME (including iterations), 'medically unexplained symptoms,' and now long Covid."
Donate here Thread here
UK - Dr Keith Geraghty is crowdfunding to support his work researching ME/CFS at the University of Manchester. The target has been reduced to £16,000.
Donate here Thread here
..............
Research
Translational Medicine
"Diagnosis of ME/CFS With Partial Least Squares Discriminant Analysis: Relevance of Blood Extracellular Vesicles" by González-Cebrián et al
The statistical method used (PLS-DA) analyses data from large numbers of variables from small numbers of patients and controls (15 of each). From the abstract: 'To the best of our knowledge, this study is the first to provide a PLS-DA model for the accurate diagnosis of severe ME/CFS based on a discreet combination of variables. In addition, we used for the first time Raman fingerprints of EVs [extracellular vesicles] to enhance the ability to discriminate severely affected ME/CFS patients from healthy subjects.'
Paper here Thread here
JCI Insight
"Plasma metabolomics reveals disrupted response and recovery following maximal exercise in ME/CFS" by Germain, Hanson et al.
The team 'monitored the evolution of 1,157 plasma metabolites in 60 ME/CFS cases (45 female) and in 45 matched healthy controls (30 female) before and after two maximal Cardiopulmonary Exercise Test challenges separated by 24 hours. Between group differences were found in some metabolic pathways. 'Numerous altered pathways were observed to depend on glutamate metabolism, a crucial component to the homeostasis of many organs in the body, including the brain.'
Paper here Thread here
Journal of Neuroscience Research
"Volumetric differences in hippocampal subfields and associations with clinical measures in ME/CFS" by Thapaliya, Staines et al
This study compared volumes of some parts of the brain in 25 patients who met Fukuda criteria only, 18 patients who met ICC criteria and 25 healthy controls. They found left hippocampal subiculum, presubiculum, and fimbria volumes were significantly larger in ME/CFS ICC patients compared with HC, but not for ME/CFS Fukuda patients. The authors conclude that 'the strict case definitions are essential in investigation of the pathophysiology of ME/CFS' and that the study 'confirms hippocampal involvement in the cognitive and memory problems of ME/CFS ICC patients.'
Paper here Thread here
Journal of Gastroenterology and Hepatology
"No difference in serum levels of B-cell activating receptor and antibodies against cytolethal distending toxin B and flagellin in post-infectious irritable bowel syndrome and chronic fatigue syndrome after Giardia infection" by Hanevik et al.
The authors conclude '...BAFF, anti-CdtB, or anti-flagellin antibodies cannot be considered as universal biomarkers for IBS or CFS.'
Paper here Thread here
Journal of Health Psychology
“Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with ME/CFS” by Hunt et al.
Keith Geraghty and colleagues argue that “people with Long Covid appear not to have experienced the same level of negative stereotyping, discrediting and exclusion from epistemic activities within medicine, compared with people living with ME/ CFS.” The article discusses potential explanations for this including the prevalence of Long Covid and the social power of the collective patient voice.
Article here Thread here
Psychological Medicine
“A distinctive profile of family genetic risk scores in a Swedish national sample of cases of fibromyalgia, irritable bowel syndrome, and chronic fatigue syndrome compared to rheumatoid arthritis and major depression” by Kendler et al.
The authors used Swedish national registers to quantify the familial genetic risk for various disorders. The results suggest that patients with fibromyalgia have a relatively unique family genetic risk score profile which differs markedly from rheumatoid arthritis and depression. A similar but less marked pattern of genetic risks was seen for chronic fatigue syndrome.
Article here Thread here
Central Asian Journal of Medical Hypotheses and Ethics
“A classification system for post-acute sequelae of SARS CoV-2 Infection” by Jason & Islam
The authors propose a 5-part classification system for post-acute sequelae of SARS CoV-2 infection (PASC) and argue that “ if the patient has been sick for 6 or more months, it is important to determine whether the person has met the ME/CFS criteria.”
Article here Thread here
...........
Coming events
UK: Conference: MitOX 2022 - 8th April 2022
This conference at Oxford University on mitochondrial research is free online.
Short talks and posters on cancer metabolism, neuroscience, diabetes, mitochondrial disorders and general mitochondrial biology.
Booking here Thread here
Chicagoland PASC Rounds A conference on April 28th where Leonard A. Jason, PhD will give a short lecture titled "Similarities and Differences between Long COVID and ME and CFS".
Registration here Thread here
...........
Other items of interest
Trial by Error by David Tuller Can Someone Please Slap a Warning Label on this Exercise-and-Rehab Long Covid Study?
Tuller walks us through the flaws with the UK study REGAIN which is currently recruiting people hospitalised for Covid-19. They will be treated with rehabilitation exercise, but there's no mention of PEM/PESE in the study protocol nor the participant information sheet.
Article here Thread here
UK Parliament The APPG (All party parliamentary group) on Coronavirus has produced a report on Long Covid with 10 recommendations including more research funding and guidance for employers, education and health services. A debate titled 'Long Covid: Impact on the Workforce' was held on 31st March.
Report here Debate transcript here Thread here
UK Evening Standard
"MP admits almost collapsing in Commons chamber due to long Covid"
In an article about the parliamentary debate on Long Covid, Shadow Health Minister Andrew Gwynn describes his own experience of needing adjustments at work.
Article here Thread here
UK - Long Covid Kids Members of the charity handed in letters to the Prime Minister's office to raise awareness of the estimated 119,000 young people in the UK with Long Covid, and to demand action.
Website here Express article here Thread here
BMJ Thorax
"Joint patient and clinician priority setting to identify 10 key research questions regarding the long-term sequelae of COVID-19" by Evans et al.
This paper, with a long author list including Trudie Chalder reports the results of a UK Priority Setting Partnership process conducted with input from Long Covid patients and clinicians early in 2021. The 10 research priorities range across causes, prognosis, and treatment including rehabilitation and psychological support.
Paper here Thread here
RNZ Warnings about Long Covid
Audio interview with among others Dr. Anna Brooks
Interview here Thread here
Long Covid Podcast Ziyad Al-Aly, Doctor & Researcher
Interview here Thread here
BBC News 'I've had long Covid for two years now'
Article here Thread here
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S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
ScienceNorway What is going on in the bodies of ME/CFS patients?
English translation of a thorough summary of current research into ME. Includes interviews with several researchers including Prof. Tronstad who says: "ME/CFS is hugely under-researched. It's a major social problem, and it's completely irresponsible not to try to figure it out".
Article here Thread here
Norway The newspaper Dagsavisen is following up a previous article where the severe ME sufferer Aurora after a long battle is still left without adequate help. Social worker and Parliament member Marian Hussein has asked the Minister of Health and Care Services to answer how ME patients should be ensured a better health service. Hussain says the way ME patients are treated shows we have a human view that is not worthy of our time.
Article here Thread here
Independent Australia "Disability advocates condemn neglect of chronic fatigue syndrome sufferers" by Natalie Hodgins.
The article describes the harm done to people who are still being prescribed CBT and GET as advised by the GP organisation. This advice also leads to people being denied disability support. Long Covid patients are being similarly harmed. A petition will be submitted to the Australian Government and the Disability Royal Commission at the end of this month.
Article here Thread here
Sydney Morning Herald ‘Crushing exhaustion’: Long COVID takes toll on young patients. A clinic treating Long Covid patients says its patients 'will participate in a rehabilitation program, including a graded exercise program to build up endurance and strength and psychological treatments for fatigue.'
Article here Thread here
News.com.au 'Don't have this treatment for long Covid'
ME/CFS sufferer Alice Rumble tells how she deteriorated following treatment with GET at a fatigue clinic in Australia and that the Royal Australian College of GP's continues to recommend GET and CBT for ME despite the US and UK having removed these treatments from their guidelines. "As Australia faces the reality of a large emerging cohort of people succumbing to long Covid, it is essential we ensure they are not harmed by dangerous, outdated treatments".
Article here Thread here
Canada - Montreal Gazette The link between long COVID and a medical mystery
Claudine Prud'homme is a member of the scientific committed of the Association Québécoise de l’Encéphalomyélite Myalgique (AQEM) which has tried to raise the alarm about connections between Long Covid and ME/CFS but feel they've been ignored. Alain Moreau says "We weren't equipped before the pandemic to take care of people with ME/CFS, so imagine now". Simon Décary says: "We know there's a link, because we have the evidence of the overlap of the clinical symptoms. But is it exactly the same biological process? That we don't know yet".
Article here Thread here
...........
Fundraising
USA The University of California, Berkeley, is crowdfunding to support the post of Dr David Tuller during the month of April with a goal of $67,000. "I am once again seeking funds to continue my work on ME (including iterations), 'medically unexplained symptoms,' and now long Covid."
Donate here Thread here
UK - Dr Keith Geraghty is crowdfunding to support his work researching ME/CFS at the University of Manchester. The target has been reduced to £16,000.
Donate here Thread here
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Research
Translational Medicine
"Diagnosis of ME/CFS With Partial Least Squares Discriminant Analysis: Relevance of Blood Extracellular Vesicles" by González-Cebrián et al
The statistical method used (PLS-DA) analyses data from large numbers of variables from small numbers of patients and controls (15 of each). From the abstract: 'To the best of our knowledge, this study is the first to provide a PLS-DA model for the accurate diagnosis of severe ME/CFS based on a discreet combination of variables. In addition, we used for the first time Raman fingerprints of EVs [extracellular vesicles] to enhance the ability to discriminate severely affected ME/CFS patients from healthy subjects.'
Paper here Thread here
JCI Insight
"Plasma metabolomics reveals disrupted response and recovery following maximal exercise in ME/CFS" by Germain, Hanson et al.
The team 'monitored the evolution of 1,157 plasma metabolites in 60 ME/CFS cases (45 female) and in 45 matched healthy controls (30 female) before and after two maximal Cardiopulmonary Exercise Test challenges separated by 24 hours. Between group differences were found in some metabolic pathways. 'Numerous altered pathways were observed to depend on glutamate metabolism, a crucial component to the homeostasis of many organs in the body, including the brain.'
Paper here Thread here
Journal of Neuroscience Research
"Volumetric differences in hippocampal subfields and associations with clinical measures in ME/CFS" by Thapaliya, Staines et al
This study compared volumes of some parts of the brain in 25 patients who met Fukuda criteria only, 18 patients who met ICC criteria and 25 healthy controls. They found left hippocampal subiculum, presubiculum, and fimbria volumes were significantly larger in ME/CFS ICC patients compared with HC, but not for ME/CFS Fukuda patients. The authors conclude that 'the strict case definitions are essential in investigation of the pathophysiology of ME/CFS' and that the study 'confirms hippocampal involvement in the cognitive and memory problems of ME/CFS ICC patients.'
Paper here Thread here
Journal of Gastroenterology and Hepatology
"No difference in serum levels of B-cell activating receptor and antibodies against cytolethal distending toxin B and flagellin in post-infectious irritable bowel syndrome and chronic fatigue syndrome after Giardia infection" by Hanevik et al.
The authors conclude '...BAFF, anti-CdtB, or anti-flagellin antibodies cannot be considered as universal biomarkers for IBS or CFS.'
Paper here Thread here
Journal of Health Psychology
“Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with ME/CFS” by Hunt et al.
Keith Geraghty and colleagues argue that “people with Long Covid appear not to have experienced the same level of negative stereotyping, discrediting and exclusion from epistemic activities within medicine, compared with people living with ME/ CFS.” The article discusses potential explanations for this including the prevalence of Long Covid and the social power of the collective patient voice.
Article here Thread here
Psychological Medicine
“A distinctive profile of family genetic risk scores in a Swedish national sample of cases of fibromyalgia, irritable bowel syndrome, and chronic fatigue syndrome compared to rheumatoid arthritis and major depression” by Kendler et al.
The authors used Swedish national registers to quantify the familial genetic risk for various disorders. The results suggest that patients with fibromyalgia have a relatively unique family genetic risk score profile which differs markedly from rheumatoid arthritis and depression. A similar but less marked pattern of genetic risks was seen for chronic fatigue syndrome.
Article here Thread here
Central Asian Journal of Medical Hypotheses and Ethics
“A classification system for post-acute sequelae of SARS CoV-2 Infection” by Jason & Islam
The authors propose a 5-part classification system for post-acute sequelae of SARS CoV-2 infection (PASC) and argue that “ if the patient has been sick for 6 or more months, it is important to determine whether the person has met the ME/CFS criteria.”
Article here Thread here
...........
Coming events
UK: Conference: MitOX 2022 - 8th April 2022
This conference at Oxford University on mitochondrial research is free online.
Short talks and posters on cancer metabolism, neuroscience, diabetes, mitochondrial disorders and general mitochondrial biology.
Booking here Thread here
Chicagoland PASC Rounds A conference on April 28th where Leonard A. Jason, PhD will give a short lecture titled "Similarities and Differences between Long COVID and ME and CFS".
Registration here Thread here
...........
Other items of interest
Trial by Error by David Tuller Can Someone Please Slap a Warning Label on this Exercise-and-Rehab Long Covid Study?
Tuller walks us through the flaws with the UK study REGAIN which is currently recruiting people hospitalised for Covid-19. They will be treated with rehabilitation exercise, but there's no mention of PEM/PESE in the study protocol nor the participant information sheet.
Article here Thread here
UK Parliament The APPG (All party parliamentary group) on Coronavirus has produced a report on Long Covid with 10 recommendations including more research funding and guidance for employers, education and health services. A debate titled 'Long Covid: Impact on the Workforce' was held on 31st March.
Report here Debate transcript here Thread here
UK Evening Standard
"MP admits almost collapsing in Commons chamber due to long Covid"
In an article about the parliamentary debate on Long Covid, Shadow Health Minister Andrew Gwynn describes his own experience of needing adjustments at work.
Article here Thread here
UK - Long Covid Kids Members of the charity handed in letters to the Prime Minister's office to raise awareness of the estimated 119,000 young people in the UK with Long Covid, and to demand action.
Website here Express article here Thread here
BMJ Thorax
"Joint patient and clinician priority setting to identify 10 key research questions regarding the long-term sequelae of COVID-19" by Evans et al.
This paper, with a long author list including Trudie Chalder reports the results of a UK Priority Setting Partnership process conducted with input from Long Covid patients and clinicians early in 2021. The 10 research priorities range across causes, prognosis, and treatment including rehabilitation and psychological support.
Paper here Thread here
RNZ Warnings about Long Covid
Audio interview with among others Dr. Anna Brooks
Interview here Thread here
Long Covid Podcast Ziyad Al-Aly, Doctor & Researcher
Interview here Thread here
BBC News 'I've had long Covid for two years now'
Article here Thread here
...........
S4ME social media: Facebook, Twitter and YouTube