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News in Brief - June 2022
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Week beginning 30th May 2022
News, articles, advocacy
UK i-news " ‘Doctors need to start believing us’: This is what ME patients say Sajid Javid needs to change" reports on the Health Secretary's statement (see last week's news) and tells the stories of 3 patients, including experiences of serious misunderstanding of ME/CFS and mistreatment by clinicians.
Article here Thread here
UK Science Media Centre book Three articles raise issues with the chapter on ME/CFS in the Science Media Centre CEO Fiona Fox’s recent book “Beyond the Hype: The Inside Story of Science’s Biggest Media Controversies”.
Lucibee's blog "SMC uncritically reinforces the orthodoxy"
'Just because a scientist is perceived as eminent and influential, does not mean they are always correct. A problem occurs when such a small group seeks to protect themselves from the more diverse group by actively seeking to limit criticism by denouncing any opposing view as “activism” or even “extremism”. The main failing here is that the SMC have defended a body of evidence without ensuring its veracity.'
Article here Thread here
Trial by Error by David Tuller Science Media Centre Chief Compares Patient Advocates to Nazis
"...it is disingenuous for Fox to conflate criticism of the GET/CBT research with the alleged aggressive and disturbed actions of what would seem to be a tiny minority..."
Tuller also quotes several of the critical reviews of the book on Amazon.
Article here Thread here
The Science Bit by Brian Hughes 'Cancel culture' paranoia and other right-wing hysterics reveal medical conservatism's true colours
"This is an outright attempt to diminish critics by juxtaposing them with the horrors of the Holocaust."
Article here Thread here
CDC Podcast Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M-E-C-F-S): Better Understanding of a Complex Illness
Dr. Beth Unger provides a general introduction to ME, but forum members are puzzled over unfounded claims made concerning stress as possible causal factor for the disease. Duration 16 min.
Podcast here Thread here
Trial by Error by David Tuller Deja Vu All Over Again with Proposed Lightning Process Study in Norway
An overview of the situation concerning a planned LP study and the process of its ethical approval. Tuller also provides some background information about LP, a patient organisation founded by practitioners and a recent website dedicated to negative experiences with the method.
Article here Thread here
Sweden
Paywalled article where professor Jonas Bergquist says there are major similarities around fatigue when it comes to Long Covid and ME, but that ME patients typically have no known lasting lung impact. He says they are finding similar disturbances in cell functions and that the two research field can benefit from each other.
Article here Thread here
Two paywalled articles in a local newspaper about two ME sufferers on living with ME.
Articles here and here Thread here
Norway
A newspaper article about the Norwegian Labour and Welfare Administration requiring an ME sufferer to undergo a gastric sleeve operation as ME treatment. The patient is no better after the surgery, and now has to be treated with CBT before she can get disability benefits. A spokesperson for the Labour and Welfare Administration says it doesn't matter for them that US and UK no longer recommend CBT as treatment for ME.
Article here Thread here
USA "Long COVID is far more prevalent than you might think"
A short segment (about 7 minutes) of the NPR Here & Now podcast talks with Columbia University physician and professor Mady Hornig who herself has been battling long COVID.
Audio here Thread here
................
Research
Aging and Disease
"The Role of Kynurenine Pathway and NAD + Metabolism in ME/CFS" by Dehhaghi et al
A hypothesis paper built on limited evidence, hypotheses and assumptions, and that concludes by suggesting a clinical trial of the nutritional supplement NAD+.
Paper here Thread here
................
Coming Events
Solve M.E. has the following three webinars scheduled in June:
Long Covid and Children with Dr. Peter Rowe
Tuesday, June 7, 11:00 am - 12:00 pm PDT
ME/CFS: NO problem? (NO = Nitric Oxide) with Francisco Westermeier
Monday, June 13, 10:00 am - 11:00 am PDT
How We Can See ME/CFS Inflammation in the Brain with Dr. Jarred Younger
Thursday, June 23, 10:00 am - 11:00 am PDT
Events page here Thread here
..................
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
UK i-news " ‘Doctors need to start believing us’: This is what ME patients say Sajid Javid needs to change" reports on the Health Secretary's statement (see last week's news) and tells the stories of 3 patients, including experiences of serious misunderstanding of ME/CFS and mistreatment by clinicians.
Article here Thread here
UK Science Media Centre book Three articles raise issues with the chapter on ME/CFS in the Science Media Centre CEO Fiona Fox’s recent book “Beyond the Hype: The Inside Story of Science’s Biggest Media Controversies”.
Lucibee's blog "SMC uncritically reinforces the orthodoxy"
'Just because a scientist is perceived as eminent and influential, does not mean they are always correct. A problem occurs when such a small group seeks to protect themselves from the more diverse group by actively seeking to limit criticism by denouncing any opposing view as “activism” or even “extremism”. The main failing here is that the SMC have defended a body of evidence without ensuring its veracity.'
Article here Thread here
Trial by Error by David Tuller Science Media Centre Chief Compares Patient Advocates to Nazis
"...it is disingenuous for Fox to conflate criticism of the GET/CBT research with the alleged aggressive and disturbed actions of what would seem to be a tiny minority..."
Tuller also quotes several of the critical reviews of the book on Amazon.
Article here Thread here
The Science Bit by Brian Hughes 'Cancel culture' paranoia and other right-wing hysterics reveal medical conservatism's true colours
"This is an outright attempt to diminish critics by juxtaposing them with the horrors of the Holocaust."
Article here Thread here
CDC Podcast Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M-E-C-F-S): Better Understanding of a Complex Illness
Dr. Beth Unger provides a general introduction to ME, but forum members are puzzled over unfounded claims made concerning stress as possible causal factor for the disease. Duration 16 min.
Podcast here Thread here
Trial by Error by David Tuller Deja Vu All Over Again with Proposed Lightning Process Study in Norway
An overview of the situation concerning a planned LP study and the process of its ethical approval. Tuller also provides some background information about LP, a patient organisation founded by practitioners and a recent website dedicated to negative experiences with the method.
Article here Thread here
Sweden
Paywalled article where professor Jonas Bergquist says there are major similarities around fatigue when it comes to Long Covid and ME, but that ME patients typically have no known lasting lung impact. He says they are finding similar disturbances in cell functions and that the two research field can benefit from each other.
Article here Thread here
Two paywalled articles in a local newspaper about two ME sufferers on living with ME.
Articles here and here Thread here
Norway
A newspaper article about the Norwegian Labour and Welfare Administration requiring an ME sufferer to undergo a gastric sleeve operation as ME treatment. The patient is no better after the surgery, and now has to be treated with CBT before she can get disability benefits. A spokesperson for the Labour and Welfare Administration says it doesn't matter for them that US and UK no longer recommend CBT as treatment for ME.
Article here Thread here
USA "Long COVID is far more prevalent than you might think"
A short segment (about 7 minutes) of the NPR Here & Now podcast talks with Columbia University physician and professor Mady Hornig who herself has been battling long COVID.
Audio here Thread here
................
Research
Aging and Disease
"The Role of Kynurenine Pathway and NAD + Metabolism in ME/CFS" by Dehhaghi et al
A hypothesis paper built on limited evidence, hypotheses and assumptions, and that concludes by suggesting a clinical trial of the nutritional supplement NAD+.
Paper here Thread here
................
Coming Events
Solve M.E. has the following three webinars scheduled in June:
Long Covid and Children with Dr. Peter Rowe
Tuesday, June 7, 11:00 am - 12:00 pm PDT
ME/CFS: NO problem? (NO = Nitric Oxide) with Francisco Westermeier
Monday, June 13, 10:00 am - 11:00 am PDT
How We Can See ME/CFS Inflammation in the Brain with Dr. Jarred Younger
Thursday, June 23, 10:00 am - 11:00 am PDT
Events page here Thread here
..................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 6th June 2022
News, articles, advocacy
UK Parliament The Health Secretary Sajid Javid held a roundtable meeting with researchers, representatives of patients and patient organisations, and of research funding bodies. Those present report a useful meeting.
Tweet from Javid here Thread here
USA Centers for Disease Control (CDC) A seven-page transcript of the update by Dr Elizabeth Unger on the CDC ME/CFS Program as presented at the May 2022 conference call is now available.
Update here Thread here
USA Updates on ICD-11 classifications for use in the USA have been posted on the CDC website.
CDC details here Thread here
#MEAction has released several short video clips from their May 12th #MillionsMissing event. These video clips are also useful for sharing on social media.
YouTube channel here Thread here
#MEAction has also announced a new Scientific & Medical Advisory Board.
Details here Thread here
Sweden
The Swedish Social Insurance Agency has published a new report showing that patients with ME/CFS and with fibromyalgia are more likely to be declined sickness benefit. It also shows that there are high regional differences in rejection rates.
Report here Media coverage from Sverige Radio here and here Blog from Mitt Eremitage here (automatic translated) Thread here
Norway The newspaper Dagsavisen writes about a letter from the Directorate of Labor and Welfare emphasising that patients with ME or with drug addiction require particularly in-depth assessment from the Norwegian Labour and Welfare Administration. Researcher Anne Kielland calls this practice a formalisation of the stigmatisation of ME patients.
Article here Thread here
Nina E. Steinkopf has written about UK Science Media Centre's role as a PR agency and sees similarities to how the organisation Recovery Norge operates. She provides several examples the organisation's campaigning and urges media to be critical.
Article here Thread here
UK Science Media Centre More on SMC director Fiona Fox's chapter on ME/CFS in her book 'Beyond the Hype...' (see previous weeks' news)
Law and Health blog by barrister Valerie Eliot Smith examines the whether a legal case can be made for defamation of individuals identifiable, though not named, in the chapter. The article concludes 'My final observation is that, regardless of whether or not this chapter contains defamatory material, its tone is very ill-advised. This raises the inevitable question of whether someone who is capable of demonstrating such poor judgment should have remained as chief executive of such an influential media organisation for the last twenty years.'
Article here Thread here
Amazon reviews To date there are 21 one star reviews on Amazon, all focused on the ME/CFS chapter.
Of particular interest is an excellent long review headed “Bad science, sloppy writing and a history of dodgy stories” by Adam Lowe (@adambeyoncelowe) who was a lay member of NICE ME/CFS guideline committee and is therefore able to point to the many inaccuracies in Fox's account.
Another excellent review by Robert (@Robert 1973) titled "Misleading and offensive" looks at some of Fox's dubious past political activities as described in an article by George Monbiot, and points to better sources of information on ME/CFS.
A comprehensive review by Mr A takes points made by Fox and refutes each in turn.
Reviews here Thread here Thread with copy of Adam's review here
Thread with copy of Robert's review here Mr A's review here
Twitter thread Adam (@abrokenbattery, @Adam pwme) has written an excellent twitter thread challenging, with extensive evidence, many of Fox's statements in the chapter. 'The chapter on ME/CFS "First they came for the communists" is biased, inaccurate and offensive.'
Twitter thread here Thread here
...............
Research news
UK DecodeME The initial testing, rewriting and ethical approval of the questionnaire for participants is now complete and the first batch of 500 randomly chosen participants will receive their invitations in the next few weeks by email. Once this is successfully completed the rest of the 25000 participants will be invited.
Website here Thread here
Ron Davis research update. Cort Johnson has written an article about the latest developments in Ron Davis's ME/CFS research, including hair mineral analysis, and the ongoing difficulties getting NIH funding for ME/CFS research.
Article here Thread here
Why I think FND is bullshit
On her blog “Don't believe the hype” Harriet Carroll criticizes the diagnosis of functional neurological disorder (FND).
Article here Thread here
Research
Research Square
“The occurrence of hyperactivated platelets and fibrinaloid microclots in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)” by Nunes et al.
This perprint reports that blood and plasma of ME/CFS patients were statistically far more hypercoagulable as judged by thromboelastography compared to controls. The authors speculate that fibrinaloid microclots might cause ischaemia and account for ME/CFS symptoms.
Article here Thread here
medRxiv
“Impact of imperfect diagnosis in ME/CFS association studies” by Malato et al.
In this preprint, the authors argue that misdiagnosis in ME/CFS studies might be one of the reasons why results fail to reproduce. They conducted a simulation study to quantify the needed statistical power to detect a disease association under the assumption of misdiagnosis.
Article here Thread here
BJPsych Open
“Mental health outcomes in patients with a long-term condition: analysis of an Improving Access to Psychological Therapies service” by Moss-Morris et al.
The authors report that having a long-term health condition has a negative effect on mental health outcomes in IAPT services, independent of associated variables such as severity of baseline mental health symptoms, ethnicity and social deprivation.
Article here Thread here
................
Coming events
IACFS/ME 2022 Virtual Medical and Scientific Conference
July 27 - 30, 9 AM - 5 PM EDT
Registration is now open for this online conference. It will focus on biomedical, behavioral, and public health aspects of ME/CFS and associated comorbidities. Part of the conference will be devoted to COVID-19 and its relevance to ME/CFS research and clinical care.
Details here Thread here
..................
Other items of interest
Missoulian Missed risk: Long COVID threat extends far beyond pandemic
"... what if the big risk wasn't death or system collapse, but debilitating illness?". The article has some mentions of ME/CFS and PEM.
Article here Twitter thread by Tom Kindlon about the article here Thread here
CBS News Transcript: Dr. Walter Koroshetz on "Face the Nation," June 5, 2022
Koroshetz on Long Covid: "There's a condition called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, that looks almost identical to what we're seeing".
Article here Thread here
Psychiatric Times Neurological and Neuropsychiatric Complications of COVID-19
A report from the 2022 American Psychiatric Association Annual Meeting where Avindra Nath, MD spoke about Long Covid and its effect on the brain. He says it's possible that Long Covid, ME/CFS, Gulf War Illness and post Lyme disease syndrome are related and suggests more clinical trials with immunomodulatory agents as well as more research on biomarkers for neuronal injury.
Article here Thread here
.......................
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
UK Parliament The Health Secretary Sajid Javid held a roundtable meeting with researchers, representatives of patients and patient organisations, and of research funding bodies. Those present report a useful meeting.
Tweet from Javid here Thread here
USA Centers for Disease Control (CDC) A seven-page transcript of the update by Dr Elizabeth Unger on the CDC ME/CFS Program as presented at the May 2022 conference call is now available.
Update here Thread here
USA Updates on ICD-11 classifications for use in the USA have been posted on the CDC website.
CDC details here Thread here
#MEAction has released several short video clips from their May 12th #MillionsMissing event. These video clips are also useful for sharing on social media.
YouTube channel here Thread here
#MEAction has also announced a new Scientific & Medical Advisory Board.
Details here Thread here
Sweden
The Swedish Social Insurance Agency has published a new report showing that patients with ME/CFS and with fibromyalgia are more likely to be declined sickness benefit. It also shows that there are high regional differences in rejection rates.
Report here Media coverage from Sverige Radio here and here Blog from Mitt Eremitage here (automatic translated) Thread here
Norway The newspaper Dagsavisen writes about a letter from the Directorate of Labor and Welfare emphasising that patients with ME or with drug addiction require particularly in-depth assessment from the Norwegian Labour and Welfare Administration. Researcher Anne Kielland calls this practice a formalisation of the stigmatisation of ME patients.
Article here Thread here
Nina E. Steinkopf has written about UK Science Media Centre's role as a PR agency and sees similarities to how the organisation Recovery Norge operates. She provides several examples the organisation's campaigning and urges media to be critical.
Article here Thread here
UK Science Media Centre More on SMC director Fiona Fox's chapter on ME/CFS in her book 'Beyond the Hype...' (see previous weeks' news)
Law and Health blog by barrister Valerie Eliot Smith examines the whether a legal case can be made for defamation of individuals identifiable, though not named, in the chapter. The article concludes 'My final observation is that, regardless of whether or not this chapter contains defamatory material, its tone is very ill-advised. This raises the inevitable question of whether someone who is capable of demonstrating such poor judgment should have remained as chief executive of such an influential media organisation for the last twenty years.'
Article here Thread here
Amazon reviews To date there are 21 one star reviews on Amazon, all focused on the ME/CFS chapter.
Of particular interest is an excellent long review headed “Bad science, sloppy writing and a history of dodgy stories” by Adam Lowe (@adambeyoncelowe) who was a lay member of NICE ME/CFS guideline committee and is therefore able to point to the many inaccuracies in Fox's account.
Another excellent review by Robert (@Robert 1973) titled "Misleading and offensive" looks at some of Fox's dubious past political activities as described in an article by George Monbiot, and points to better sources of information on ME/CFS.
A comprehensive review by Mr A takes points made by Fox and refutes each in turn.
Reviews here Thread here Thread with copy of Adam's review here
Thread with copy of Robert's review here Mr A's review here
Twitter thread Adam (@abrokenbattery, @Adam pwme) has written an excellent twitter thread challenging, with extensive evidence, many of Fox's statements in the chapter. 'The chapter on ME/CFS "First they came for the communists" is biased, inaccurate and offensive.'
Twitter thread here Thread here
...............
Research news
UK DecodeME The initial testing, rewriting and ethical approval of the questionnaire for participants is now complete and the first batch of 500 randomly chosen participants will receive their invitations in the next few weeks by email. Once this is successfully completed the rest of the 25000 participants will be invited.
Website here Thread here
Ron Davis research update. Cort Johnson has written an article about the latest developments in Ron Davis's ME/CFS research, including hair mineral analysis, and the ongoing difficulties getting NIH funding for ME/CFS research.
Article here Thread here
Why I think FND is bullshit
On her blog “Don't believe the hype” Harriet Carroll criticizes the diagnosis of functional neurological disorder (FND).
Article here Thread here
Research
Research Square
“The occurrence of hyperactivated platelets and fibrinaloid microclots in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)” by Nunes et al.
This perprint reports that blood and plasma of ME/CFS patients were statistically far more hypercoagulable as judged by thromboelastography compared to controls. The authors speculate that fibrinaloid microclots might cause ischaemia and account for ME/CFS symptoms.
Article here Thread here
medRxiv
“Impact of imperfect diagnosis in ME/CFS association studies” by Malato et al.
In this preprint, the authors argue that misdiagnosis in ME/CFS studies might be one of the reasons why results fail to reproduce. They conducted a simulation study to quantify the needed statistical power to detect a disease association under the assumption of misdiagnosis.
Article here Thread here
BJPsych Open
“Mental health outcomes in patients with a long-term condition: analysis of an Improving Access to Psychological Therapies service” by Moss-Morris et al.
The authors report that having a long-term health condition has a negative effect on mental health outcomes in IAPT services, independent of associated variables such as severity of baseline mental health symptoms, ethnicity and social deprivation.
Article here Thread here
................
Coming events
IACFS/ME 2022 Virtual Medical and Scientific Conference
July 27 - 30, 9 AM - 5 PM EDT
Registration is now open for this online conference. It will focus on biomedical, behavioral, and public health aspects of ME/CFS and associated comorbidities. Part of the conference will be devoted to COVID-19 and its relevance to ME/CFS research and clinical care.
Details here Thread here
..................
Other items of interest
Missoulian Missed risk: Long COVID threat extends far beyond pandemic
"... what if the big risk wasn't death or system collapse, but debilitating illness?". The article has some mentions of ME/CFS and PEM.
Article here Twitter thread by Tom Kindlon about the article here Thread here
CBS News Transcript: Dr. Walter Koroshetz on "Face the Nation," June 5, 2022
Koroshetz on Long Covid: "There's a condition called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, that looks almost identical to what we're seeing".
Article here Thread here
Psychiatric Times Neurological and Neuropsychiatric Complications of COVID-19
A report from the 2022 American Psychiatric Association Annual Meeting where Avindra Nath, MD spoke about Long Covid and its effect on the brain. He says it's possible that Long Covid, ME/CFS, Gulf War Illness and post Lyme disease syndrome are related and suggests more clinical trials with immunomodulatory agents as well as more research on biomarkers for neuronal injury.
Article here Thread here
.......................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 13th June 2022
News, articles, advocacy
Sweden
The Swedish Parliament has supported a motion to ask the Government to explore how a National Competence Centre for ME/CFS can be established.
Motion here Thread here
Emerge Australia website now includes guidance for health professionals including diagnosis (IOM criteria), management and support (pacing, rest and symptomatic treatments) and two continuing professional development modules.
Website here Thread here
Trial by Error by David Tuller Does Functional Neurology Disorder Account for a Third of Outpatient Neurology Consults?
Tuller shows that claims that a large proportion of neurology consultations concern FND are based on bad data: "In short, the documented prevalence of FND among outpatients attending neurology clinics, according to the revised description of the condition and the data collected by top experts, is less than 6%–not 16% and certainly not a third."
Article here Thread here
The Science Bit
Medical haste, COVID-19, and the mythology of “Medically Unexplained Symptoms". In this blog post, Brian Hughes, psychologist, writer, and university professor working in Galway, Ireland, explores the psychologizing of physical illnesses.
Article here Thread here
UK - The Guardian "UK doctors with long Covid say they have been denied disability benefits" Doctors are finding their applications for personal independence payments rejected despite severe disability.
Article here Thread here
Southwest Connector In his own words: advocating for ME/CFS
Patient advocate Billy Hanlon from #MEAction shares his story as ME sufferer and raises awareness for both ME and Long Covid.
Interview here Thread here
BBC Radio 5 Interview with Dr. Binita Kane
@ABrokenBattery provides on Twitter highlights from this interview where Dr. Binita Kane talks about the severity of Long Covid. She says that had we invested the research into postviral illnesses (such as ME) before, we would not have been in such a pickle now with Long Covid.
Twitter thread here Thread here
Time Why So Many Long COVID Patients Are Reporting Suicidal Thoughts
The article includes some information about the dismissal of ME. Adriane Tillman and Jaime Seltzer from #MEAction are interviewed. Seltzer says "research on mental health needs to better account for the realities of chronic illness".
Article here Thread here
ME/CFS Skeptic
A new blog post explores the dark psychosomatic history of peptic ulcer. Repressed emotions and stress were considered its main cause until the 1980s when an Australian doctor discovered the role of Helicobacter pylori.
Article here Thread here
..................
Research news
Pilot study in Norway with Daratumumab
Fluge et al. are recruiting six moderate/severe ME patients for a pilot trial with the anti-cancer monoclonal antibody Daratumumab at Haukeland University Hospital.
Thread with more information here
UK Action for ME and ME Research UK are jointly funding a PhD studentship on the genetic basis of ME/CFS. 'This new project will look at a specific type of genetic variation called Retrotransposon Insertion Polymorphism'.
Article here and here Thread here
Action for ME is also part funding research by Dr Karl Morton and a PhD student on 'the role for the microbiome and leaky gut as a symptom of M.E./CFS and other conditions associated with chronic disease.'
Article here Thread here
Australia Researchers at Monash University are recruiting people with ME/CFS to a study aimed at developing an ocular motor marker for ME/CFS.
Thread with contact links here
USA The Bateman Horne Center is recruiting patients for a clinical research study: "Endothelial Function and Upright Activity in ME/CFS and Long COVID." The study will last one week and requires one in-person clinic visit.
Details here Thread here
USA Open Medicine Foundation (OMF) has posted a 15 minute interview with Ron Davis where he gives a research update on a new project: The Itaconate Pathway study.
Video here Thread here
USA Solve ME has posted a recording from their June 13 webinar "ME/CFS: NO problem?" featuring Francisco Westermeier, PhD. The topic is nitric oxide (NO) production in ME/CFS patients.
Video here Thread here
................
Research
Journal of Translational Medicine
“Treatments of chronic fatigue syndrome and its debilitating comorbidities: a 12-year population-based study” by Leon et al.
The authors published data on 6306 patients identified as having CFS during the period 2000–2012 using the National Health Insurance Research Database of Taiwan.
Article here Thread here
Journal of Translational Medicine
"Combination of whole body cryotherapy with static stretching exercises reduces fatigue and improves functioning of the autonomic nervous system in Chronic Fatigue Syndrome" by Kujawski et al.
Found some improvements in symptoms 'associated with changes in cardiovascular and autonomic function' after a 2 week program of cryotherapy and stretching treatments. The authors conclude this supports further studies.
Paper here Thread here
Current Developments in Nutrition
"Intracellular Nutritional Biomarker Differences in ME/CFS Subjects and Healthy Controls" by Krishnakumar et al.
In this small study (11 patients, 10 controls) some differences were found in intracellular nutrients that relate to energy production.
Paper here (abstract only) Thread here
....................
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
Sweden
The Swedish Parliament has supported a motion to ask the Government to explore how a National Competence Centre for ME/CFS can be established.
Motion here Thread here
Emerge Australia website now includes guidance for health professionals including diagnosis (IOM criteria), management and support (pacing, rest and symptomatic treatments) and two continuing professional development modules.
Website here Thread here
Trial by Error by David Tuller Does Functional Neurology Disorder Account for a Third of Outpatient Neurology Consults?
Tuller shows that claims that a large proportion of neurology consultations concern FND are based on bad data: "In short, the documented prevalence of FND among outpatients attending neurology clinics, according to the revised description of the condition and the data collected by top experts, is less than 6%–not 16% and certainly not a third."
Article here Thread here
The Science Bit
Medical haste, COVID-19, and the mythology of “Medically Unexplained Symptoms". In this blog post, Brian Hughes, psychologist, writer, and university professor working in Galway, Ireland, explores the psychologizing of physical illnesses.
Article here Thread here
UK - The Guardian "UK doctors with long Covid say they have been denied disability benefits" Doctors are finding their applications for personal independence payments rejected despite severe disability.
Article here Thread here
Southwest Connector In his own words: advocating for ME/CFS
Patient advocate Billy Hanlon from #MEAction shares his story as ME sufferer and raises awareness for both ME and Long Covid.
Interview here Thread here
BBC Radio 5 Interview with Dr. Binita Kane
@ABrokenBattery provides on Twitter highlights from this interview where Dr. Binita Kane talks about the severity of Long Covid. She says that had we invested the research into postviral illnesses (such as ME) before, we would not have been in such a pickle now with Long Covid.
Twitter thread here Thread here
Time Why So Many Long COVID Patients Are Reporting Suicidal Thoughts
The article includes some information about the dismissal of ME. Adriane Tillman and Jaime Seltzer from #MEAction are interviewed. Seltzer says "research on mental health needs to better account for the realities of chronic illness".
Article here Thread here
ME/CFS Skeptic
A new blog post explores the dark psychosomatic history of peptic ulcer. Repressed emotions and stress were considered its main cause until the 1980s when an Australian doctor discovered the role of Helicobacter pylori.
Article here Thread here
..................
Research news
Pilot study in Norway with Daratumumab
Fluge et al. are recruiting six moderate/severe ME patients for a pilot trial with the anti-cancer monoclonal antibody Daratumumab at Haukeland University Hospital.
Thread with more information here
UK Action for ME and ME Research UK are jointly funding a PhD studentship on the genetic basis of ME/CFS. 'This new project will look at a specific type of genetic variation called Retrotransposon Insertion Polymorphism'.
Article here and here Thread here
Action for ME is also part funding research by Dr Karl Morton and a PhD student on 'the role for the microbiome and leaky gut as a symptom of M.E./CFS and other conditions associated with chronic disease.'
Article here Thread here
Australia Researchers at Monash University are recruiting people with ME/CFS to a study aimed at developing an ocular motor marker for ME/CFS.
Thread with contact links here
USA The Bateman Horne Center is recruiting patients for a clinical research study: "Endothelial Function and Upright Activity in ME/CFS and Long COVID." The study will last one week and requires one in-person clinic visit.
Details here Thread here
USA Open Medicine Foundation (OMF) has posted a 15 minute interview with Ron Davis where he gives a research update on a new project: The Itaconate Pathway study.
Video here Thread here
USA Solve ME has posted a recording from their June 13 webinar "ME/CFS: NO problem?" featuring Francisco Westermeier, PhD. The topic is nitric oxide (NO) production in ME/CFS patients.
Video here Thread here
................
Research
Journal of Translational Medicine
“Treatments of chronic fatigue syndrome and its debilitating comorbidities: a 12-year population-based study” by Leon et al.
The authors published data on 6306 patients identified as having CFS during the period 2000–2012 using the National Health Insurance Research Database of Taiwan.
Article here Thread here
Journal of Translational Medicine
"Combination of whole body cryotherapy with static stretching exercises reduces fatigue and improves functioning of the autonomic nervous system in Chronic Fatigue Syndrome" by Kujawski et al.
Found some improvements in symptoms 'associated with changes in cardiovascular and autonomic function' after a 2 week program of cryotherapy and stretching treatments. The authors conclude this supports further studies.
Paper here Thread here
Current Developments in Nutrition
"Intracellular Nutritional Biomarker Differences in ME/CFS Subjects and Healthy Controls" by Krishnakumar et al.
In this small study (11 patients, 10 controls) some differences were found in intracellular nutrients that relate to energy production.
Paper here (abstract only) Thread here
....................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 20th June 2022
News, articles, advocacy
UK Physios for ME celebrate their 3 year anniversary. The 4 physios have nearly finished writing a book “Physiotherapy Management of ME/CFS”, and are overseeing 5 research projects with more planned, presented at conferences, contributed as stakeholders to the new NICE guideline, and provide advice and education for physios. 'We have been overwhelmed with the support from the ME community for all of these projects, and the knowledge and dedication of the people with ME who we collaborated with.'
Article here Thread here
ME conference in Sweden The Swedish patient organisation RME is organising a new ME conference for October 2022 in Stockholm, Malmö and in digital version.
Program and more information here Thread here
France
In January, Inserm, the French National Institute of Health and Medical Research published an extended article on ME/CFS featuring interviews with French ME/CFS clinician-researchers including Jean-Dominique de Korwin, François Jérôme Authier, and Alaa Ghali.
Article here Thread here
Austria
More than 20.000 people signed a petition demanding the government educate doctors on ME/CFS and invest in research. Unfortunately, the government responded that it sees no reason to take action.
Response government 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 Temperature Dysregulation.
Article here Thread here
UK Parliament Following the roundtable meeting with Health Secretary Sajid Javid reported 2 weeks ago, several working groups have been set up. The group on education and attitudes is to be chaired by Prof Stephen Holgate and Dr Nina Muirhead.
Thread here
Doctors with ME have produced an article and video "Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review - Replacing Working Group Glass Ceilings with Enforceable Minimal Standards" suggesting that, because of resistance from some clinicians, the working groups need to be able to mandate change. Forum discussion raises concerns that the material overcomplicates a useful message.
Article and video here Thread here
Podcast The Ezra Klein Show - What We Do - and, Frustratingly, Don't - Know About Long Covid
Good interview with Dr. Lekshmi Santhosh who provides updated, general information on Long Covid and has a couple of brief mentions of ME.
Podcast and transcript here Thread here
ME/CFS Skeptic
The dark psychosomatic history of peptic ulcer part II: this second blog post in the series details psychosomatic theories of peptic ulcers before the discovery of Helicobacter pylori.
Article here Thread here
Mike's EU Marathons Mike Harley raised over £300 for Invest In ME from his Liechtenstein marathon.
Race report here Thread here
.............
Research news
USA The Bateman Horne Center is recruiting patients for a study called RESTORE ME to test oxaloacetate, a nutritional supplement, in ME/CFS patients. The study requires four in-person clinic visits.
Details here Thread here
USA Open Medicine Foundation (OMF) has posted the next video in their series of research updates. In this video Ron Davis talks about a $1.6 million grant from the DOD to study manganese and its role in ME/CFS.
Video here Thread here
.............
Research and commentary
Frontiers in Medicine - Family Medicine and Primary Care
"Orthostatic Challenge Causes Distinctive Symptomatic, Hemodynamic and Cognitive Responses in Long COVID and ME/CFS" by Vernon et al
42 people with Long COVID, 26 ME/CFS and 20 healthy controls were studied just before, during, immediately after, 2 and 7 days following completion of the NASA Lean Test (NLT). The two patient groups showed worsened symptoms, pulse pressure and cognitive test results after the NLT compared to healthy controls.
Paper here Thread here
University of Oslo - PhD thesis
"Immunogenetic Studies In ME/CFS" by Riad Hajdarevic
The thesis (in English and Norwegian) begins with a summary of 3 papers on Hajdarevic's research into immunology and genetics in ME/CFS.
Thesis here Thread here
Brain, Behavior and Immunity
"The genetics of ME: A commentary on Hajdarevic et al." by Ponting & McGrath
ME/CFS Research Review
"Norwegians publish the biggest ME DNA study yet and show we need even bigger studies" a summary article about the above by Simon McGrath
The article comments on points raised in Hajdarevic et al study including finding no support for genetic differences other studies had reported. Ponting and McGrath highlight the importance of large studies such as DecodeME, accurate diagnosis of participants, and patient involvement in research.
Article here Summary here Thread here
Cancer research
Poster presentation abstract: "Increased risks of cancer and autoimmune disease among the first-degree relatives of patients with ME/CFS" by Moslehi et al
Pedigree data was analysed from 59 people with ME/CFS and 54 matched controls. The authors suggest the results may lead to clues to an underlying mechanism.
Abstract here Thread here
Frontiers in Psychology
“The Link Between Energy-Related Sensations and Metabolism: Implications for Treating Fatigue” by Filippi et al.
The authors investigate the link between sensation of fatigue and different components of energy metabolism.
Article here Thread here
Clinical and Experimental Rheumatology
“The Montreal Cognitive Assessment Test (MoCA) as a screening tool for cognitive dysfunction in fibromyalgia” by Alkana et al.
This study examined whether the Montreal Cognitive Assessment (MoCA) test is a valid measure of cognitive assessment in fibromyalgia patients, by comparing it to a comprehensive computerised cognitive assessment battery.
Article here Thread here
Frontiers in Neurology
“Altered Effective Connectivity of Resting-State Networks by Tai Chi Chuan in Chronic Fatigue Syndrome Patients: A Multivariate Granger Causality Study” by Li et al.
The authors explored the influence of Tai Chi Chuan exercise on brain functional networks in CFS patients.
Article here Thread here
Long Covid research - some recent examples
MedRxiv Pre-print
"Post-acute COVID-19 cognitive impairment and decline uniquely associate with kynurenine pathway activation" Brew et al
In this Australian study 128 people who had mild to moderate acute Covid-19 had their cognitive function and some blood markers assessed at intervals over 12 months. The authors suggest the association found between cognitive decline and kynurenine pathway activation is a potential therapeutic target.
Paper here Thread here
MedRxiv preprint
"Cardiopulmonary exercise testing to evaluate post-acute sequelae of COVID-19 (“Long COVID”): a systematic review and meta-analysis" by Durstenfeld et al.
Suggests reduced exercise capacity is not just deconditioning, and 'may be multifactorial or related to underlying autonomic dysfunction.'
Article here Thread here
..............
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
UK Physios for ME celebrate their 3 year anniversary. The 4 physios have nearly finished writing a book “Physiotherapy Management of ME/CFS”, and are overseeing 5 research projects with more planned, presented at conferences, contributed as stakeholders to the new NICE guideline, and provide advice and education for physios. 'We have been overwhelmed with the support from the ME community for all of these projects, and the knowledge and dedication of the people with ME who we collaborated with.'
Article here Thread here
ME conference in Sweden The Swedish patient organisation RME is organising a new ME conference for October 2022 in Stockholm, Malmö and in digital version.
Program and more information here Thread here
France
In January, Inserm, the French National Institute of Health and Medical Research published an extended article on ME/CFS featuring interviews with French ME/CFS clinician-researchers including Jean-Dominique de Korwin, François Jérôme Authier, and Alaa Ghali.
Article here Thread here
Austria
More than 20.000 people signed a petition demanding the government educate doctors on ME/CFS and invest in research. Unfortunately, the government responded that it sees no reason to take action.
Response government 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 Temperature Dysregulation.
Article here Thread here
UK Parliament Following the roundtable meeting with Health Secretary Sajid Javid reported 2 weeks ago, several working groups have been set up. The group on education and attitudes is to be chaired by Prof Stephen Holgate and Dr Nina Muirhead.
Thread here
Doctors with ME have produced an article and video "Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review - Replacing Working Group Glass Ceilings with Enforceable Minimal Standards" suggesting that, because of resistance from some clinicians, the working groups need to be able to mandate change. Forum discussion raises concerns that the material overcomplicates a useful message.
Article and video here Thread here
Podcast The Ezra Klein Show - What We Do - and, Frustratingly, Don't - Know About Long Covid
Good interview with Dr. Lekshmi Santhosh who provides updated, general information on Long Covid and has a couple of brief mentions of ME.
Podcast and transcript here Thread here
ME/CFS Skeptic
The dark psychosomatic history of peptic ulcer part II: this second blog post in the series details psychosomatic theories of peptic ulcers before the discovery of Helicobacter pylori.
Article here Thread here
Mike's EU Marathons Mike Harley raised over £300 for Invest In ME from his Liechtenstein marathon.
Race report here Thread here
.............
Research news
USA The Bateman Horne Center is recruiting patients for a study called RESTORE ME to test oxaloacetate, a nutritional supplement, in ME/CFS patients. The study requires four in-person clinic visits.
Details here Thread here
USA Open Medicine Foundation (OMF) has posted the next video in their series of research updates. In this video Ron Davis talks about a $1.6 million grant from the DOD to study manganese and its role in ME/CFS.
Video here Thread here
.............
Research and commentary
Frontiers in Medicine - Family Medicine and Primary Care
"Orthostatic Challenge Causes Distinctive Symptomatic, Hemodynamic and Cognitive Responses in Long COVID and ME/CFS" by Vernon et al
42 people with Long COVID, 26 ME/CFS and 20 healthy controls were studied just before, during, immediately after, 2 and 7 days following completion of the NASA Lean Test (NLT). The two patient groups showed worsened symptoms, pulse pressure and cognitive test results after the NLT compared to healthy controls.
Paper here Thread here
University of Oslo - PhD thesis
"Immunogenetic Studies In ME/CFS" by Riad Hajdarevic
The thesis (in English and Norwegian) begins with a summary of 3 papers on Hajdarevic's research into immunology and genetics in ME/CFS.
Thesis here Thread here
Brain, Behavior and Immunity
"The genetics of ME: A commentary on Hajdarevic et al." by Ponting & McGrath
ME/CFS Research Review
"Norwegians publish the biggest ME DNA study yet and show we need even bigger studies" a summary article about the above by Simon McGrath
The article comments on points raised in Hajdarevic et al study including finding no support for genetic differences other studies had reported. Ponting and McGrath highlight the importance of large studies such as DecodeME, accurate diagnosis of participants, and patient involvement in research.
Article here Summary here Thread here
Cancer research
Poster presentation abstract: "Increased risks of cancer and autoimmune disease among the first-degree relatives of patients with ME/CFS" by Moslehi et al
Pedigree data was analysed from 59 people with ME/CFS and 54 matched controls. The authors suggest the results may lead to clues to an underlying mechanism.
Abstract here Thread here
Frontiers in Psychology
“The Link Between Energy-Related Sensations and Metabolism: Implications for Treating Fatigue” by Filippi et al.
The authors investigate the link between sensation of fatigue and different components of energy metabolism.
Article here Thread here
Clinical and Experimental Rheumatology
“The Montreal Cognitive Assessment Test (MoCA) as a screening tool for cognitive dysfunction in fibromyalgia” by Alkana et al.
This study examined whether the Montreal Cognitive Assessment (MoCA) test is a valid measure of cognitive assessment in fibromyalgia patients, by comparing it to a comprehensive computerised cognitive assessment battery.
Article here Thread here
Frontiers in Neurology
“Altered Effective Connectivity of Resting-State Networks by Tai Chi Chuan in Chronic Fatigue Syndrome Patients: A Multivariate Granger Causality Study” by Li et al.
The authors explored the influence of Tai Chi Chuan exercise on brain functional networks in CFS patients.
Article here Thread here
Long Covid research - some recent examples
MedRxiv Pre-print
"Post-acute COVID-19 cognitive impairment and decline uniquely associate with kynurenine pathway activation" Brew et al
In this Australian study 128 people who had mild to moderate acute Covid-19 had their cognitive function and some blood markers assessed at intervals over 12 months. The authors suggest the association found between cognitive decline and kynurenine pathway activation is a potential therapeutic target.
Paper here Thread here
MedRxiv preprint
"Cardiopulmonary exercise testing to evaluate post-acute sequelae of COVID-19 (“Long COVID”): a systematic review and meta-analysis" by Durstenfeld et al.
Suggests reduced exercise capacity is not just deconditioning, and 'may be multifactorial or related to underlying autonomic dysfunction.'
Article here Thread here
..............
S4ME social media: Facebook, Twitter and YouTube
Week beginning 27th June 2022
News, articles, advocacy
USA #MEAction After meeting with #MEAction last month the Office of Disability Employment Policy (ODEP), part of the US Dept. of Labor, has updated the previously outdated ME/CFS information on their website.
Article here Thread here
Australia The National Health and Medical Research Council (NHMRC) no longer recommends graded exercise therapy on its website. The section headed 'Information for clinicians' consists of 4 links, including the 2021 NICE ME/CFS guideline and the 2017 Paediatric Primer.
NHMRC here Thread here
Europe
Member of the European Parliament Pascal Arimont and his colleagues submitted a question on the “lack of tangible results following Parliament’s resolution of 18 June 2020 on funding for biomedical research on ME/CFS and the fight against long COVID”.
Article here Thread here
UK NHS ME/CFS services for children and young people. Documents produced by some paediatric services still recommend CBT and GET as treatments for ME/CFS, in contradiction to the 2021 NICE guideline. The ME Association has written to some to express concern, including one in East Kent that advises continuing exercise regardless of symptoms. As a result the East Kent online document has been removed. The MEA has also written to the Norfolk hospitals which still recommend GET.
MEA articles here and here Thread here and here
Mad in America
“The UK’s IAPT Service Is an Abject Failure”. In this article, Michael Scott criticizes the Improving Access to Psychological Therapies (IAPT) program in the United Kingdom. CFS is mentioned as a long-term physical condition treated within IAPT.
Article here Thread here
#MEAction has launched a new podcast called Chronically Complex. The first episode features an interview with Meghan O'Rourke, author of The Invisible Kingdom.
Announcement here Thread here
LP-stories is a Norwegian website collecting stories about ME sufferers' experience with the controversial alternative method Lightning Process. The stories have been translated into English and a new story from T. Knutsen has recently been added.
'I am among those who in a hallelujah-mode have been preaching the Lightning Process. Today I am ashamed, embarrassed and sorry for the pain I may have inflicted on others who are ill.'
New story here Thread here
Sweden Two short news segments about ME from the public broadcaster SVT. One about Eleanor who never recovered from mononucleosis and developed severe ME. Her mother talks about the struggle to get a diagnosis and the lack of help to this patient group. In the second segment senior doctor Alm says ME is challenging, as that the name is inaccurate, there's not a lot of knowledge and the symptoms are shared with other illnesses.
First segment here Second segment here Thread here
UK BBC ABrokenBattery shares on Twitter a news segment from BBC Look North about Stephen who developed ME after Covid vaccination. The story was also included in the 6 O'clock Edition with statement from the North Cumbria Integrated Care Trust claiming that psychological therapies and physiotherapy have shown positive impact on ME.
Tweets here and here Thread here
Long Covid news
Canada A fact sheet for managing post-Covid-19 fatigue and PEM, meant for health professionals in Quebec, has been provided by the INESS (Institut national d'excellence en santé et en services sociaux). This document is in French.
PDF here Thread here
Off-Kilter Podcast "The Long Haul": Inside the Patient Advocacy Revolution of the COVID Era
Part 1 of 2 episodes on Long Covid, patient advocacy and post viral illness. Guests are Lisa McCorkell from Patient Led Research Collaborative, Netia McCrery from COVID-19 Longhauler Advocacy Project and Ryan Prior from #MEAction.
Podcast here Thread here
Australia on Long Covid
ABC radio program: "'Mass disabling event': Long COVID is hitting Australian workplaces";
University of Sydney opinion article: "'Long COVID' presents a major health challenge - how can Australia be prepared?"
OzSage media statement: "Australia must plan now for a significant burden of disease and disability due to Long COVID"
ABC here UoS here OzSage here Thread here
..............
Research news
Dr. Jarred Younger Presents: How We Can See ME/CFS Inflammation In the Brain.
In this video Dr Younger describes his ongoing research that builds on his previously published work that found higher brain temperatures in people with ME/CFS, which he says is indicative of inflammation. Research includes NIH funded replication of the brain temperature study with a larger group of patients; developing new methods to learn about causes of the raised temperature, including activated microglia and what might be activating them; and clinical trials of possible treatments.
Video here (duration 1 hour) Thread with summary here
UK - Physios for ME are doing an interview-based study exploring the use of transcutaneous vagus nerve stimulation by people with ME. 'Data collection is ongoing, and we would like to talk to more people, particularly those who did not find any benefits.'
Article with contact details here Thread here
NIH The NIH has contacted participants of a previous research study to announce a new spin-off study of mitochondrial function in muscle tissue in ME/CFS.
Thread here
Germany
It has been reported that Berlin Cures no longer wants to make a commitment to make their drug BC007 available for a ME/CFS study. The company seems to focus on a multicenter trial for Long Covid.
Tweet here Thread here
The Guardian Can our mitochondria help to beat long Covid?
Dr. David Systrom are among those interviewed and says: "In both ME/CFS and long Covid it's most likely that these are acquired forms of mitochondrial dysfunction, perhaps related to the initial infection itself or an autoimmune response to a virus or both". The article mentions an ongoing clinical trial at Oxford University on an amino acid cocktail (AXA1125) as treatment for fatigue.
Article here Thread here
Sweden Funding announcement by the Swedish Cancer Society:
Infections and autoimmunity: risk factors for chronic fatigue syndrome and subsequent B cell lymphoma and chronic lymphocytic leukemia development
Anders Rosén, Linköping University, Sweden
Details here Thread here
...............
Coming Events
USA "White House and HHS Call on Reports Addressing the Long-Term Effects of COVID-19"
A briefing on the status of plans to address Long COVID will be held on Friday, July 15, at 4 PM Eastern Time. Registration required.
Register here Details here Thread here
...............
Research and commentary
Journal of General Internal Medicine
“Bias in Exercise Trials for ME/CFS: the Importance of Objective Outcomes and Long-term Follow-up”. In this excellent letter, Michiel Tack criticises a paper by Sharpe and colleagues that claimed graded exercise therapy and cognitive behavioural therapy are effective treatments for ME/CFS. Robert Saunders has already written a letter which hasn’t been published yet by the journal. Sharpe and colleagues have written a brief response to the letters by Tack and Saunders.
Letter Tack here Response Sharpe et al. here Thread here
BJ Psych Open (a journal of the Royal College of Psychiatrists)
"Why Should ACT Work When CBT Has Failed? a Study Assessing Acceptability and Feasibility of Acceptance and Commitment Therapy (ACT) for Paediatric Patients With CFS/ME" by Crawley et al.
19 young people for whom CBT was ineffective had several sessions of ACT. 4 dropped out. 12 interviewed found the treatment acceptable.
The authors open the abstract with incorrect information that NICE recommends CBT/GET, and a unsubstantiated claim that only 15% do not fully recover within a year of treatment with the clinic's CBT for fatigue.
Paper here Thread here
Sports Medicine
"The use of oxygen as a possible screening biomarker for the diagnosis of chronic fatigue" by Pifarré et al
22 women with CFS and 22 healthy controls did a single CPET (cardiopulmonary exercise test). Three factors related to oxygen consumption were combined mathematically to form what the authors say could be used as a screening biomarker for CFS. However, this would need to be replicated in larger samples and with controls matched for fitness.
Paper here Thread here
Journal of Translational Medicine
"Oxaloacetate Treatment For Mental And Physical Fatigue In ME/CFS and Long-COVID fatigue patients: a non-randomized controlled clinical trial" by Cash and Kaufman
From the conclusion: 'This small, non-randomized open-label dose escalating “Proof-of-Concept” clinical trial yielded impressive highly significant improvements in fatigue in both ME/CFS patients and Long-COVID patients.'
However, claims made for efficacy based on the Chalder Fatigue questionnaire were not supported by any significant improvement on the Fatigue Severity Scale, and the data used as the placebo comparator for this 6 week open label trial was from an unrelated trial over 26 weeks.
Paper here Thread here
Long Covid research
Cell "Mild respiratory COVID can cause multi-lineage neural cell and myelin dysregulation" by Monje et al. (17 authors include Nath and Putrino)
In this study partly in mice and partly in humans, the authors conclude:
'These findings illustrate similar neuropathophysiology after cancer therapy and respiratory SARS-CoV-2 infection which may contribute to cognitive impairment following even mild COVID.'
Paper here Thread here
..............
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
USA #MEAction After meeting with #MEAction last month the Office of Disability Employment Policy (ODEP), part of the US Dept. of Labor, has updated the previously outdated ME/CFS information on their website.
Article here Thread here
Australia The National Health and Medical Research Council (NHMRC) no longer recommends graded exercise therapy on its website. The section headed 'Information for clinicians' consists of 4 links, including the 2021 NICE ME/CFS guideline and the 2017 Paediatric Primer.
NHMRC here Thread here
Europe
Member of the European Parliament Pascal Arimont and his colleagues submitted a question on the “lack of tangible results following Parliament’s resolution of 18 June 2020 on funding for biomedical research on ME/CFS and the fight against long COVID”.
Article here Thread here
UK NHS ME/CFS services for children and young people. Documents produced by some paediatric services still recommend CBT and GET as treatments for ME/CFS, in contradiction to the 2021 NICE guideline. The ME Association has written to some to express concern, including one in East Kent that advises continuing exercise regardless of symptoms. As a result the East Kent online document has been removed. The MEA has also written to the Norfolk hospitals which still recommend GET.
MEA articles here and here Thread here and here
Mad in America
“The UK’s IAPT Service Is an Abject Failure”. In this article, Michael Scott criticizes the Improving Access to Psychological Therapies (IAPT) program in the United Kingdom. CFS is mentioned as a long-term physical condition treated within IAPT.
Article here Thread here
#MEAction has launched a new podcast called Chronically Complex. The first episode features an interview with Meghan O'Rourke, author of The Invisible Kingdom.
Announcement here Thread here
LP-stories is a Norwegian website collecting stories about ME sufferers' experience with the controversial alternative method Lightning Process. The stories have been translated into English and a new story from T. Knutsen has recently been added.
'I am among those who in a hallelujah-mode have been preaching the Lightning Process. Today I am ashamed, embarrassed and sorry for the pain I may have inflicted on others who are ill.'
New story here Thread here
Sweden Two short news segments about ME from the public broadcaster SVT. One about Eleanor who never recovered from mononucleosis and developed severe ME. Her mother talks about the struggle to get a diagnosis and the lack of help to this patient group. In the second segment senior doctor Alm says ME is challenging, as that the name is inaccurate, there's not a lot of knowledge and the symptoms are shared with other illnesses.
First segment here Second segment here Thread here
UK BBC ABrokenBattery shares on Twitter a news segment from BBC Look North about Stephen who developed ME after Covid vaccination. The story was also included in the 6 O'clock Edition with statement from the North Cumbria Integrated Care Trust claiming that psychological therapies and physiotherapy have shown positive impact on ME.
Tweets here and here Thread here
Long Covid news
Canada A fact sheet for managing post-Covid-19 fatigue and PEM, meant for health professionals in Quebec, has been provided by the INESS (Institut national d'excellence en santé et en services sociaux). This document is in French.
PDF here Thread here
Off-Kilter Podcast "The Long Haul": Inside the Patient Advocacy Revolution of the COVID Era
Part 1 of 2 episodes on Long Covid, patient advocacy and post viral illness. Guests are Lisa McCorkell from Patient Led Research Collaborative, Netia McCrery from COVID-19 Longhauler Advocacy Project and Ryan Prior from #MEAction.
Podcast here Thread here
Australia on Long Covid
ABC radio program: "'Mass disabling event': Long COVID is hitting Australian workplaces";
University of Sydney opinion article: "'Long COVID' presents a major health challenge - how can Australia be prepared?"
OzSage media statement: "Australia must plan now for a significant burden of disease and disability due to Long COVID"
ABC here UoS here OzSage here Thread here
..............
Research news
Dr. Jarred Younger Presents: How We Can See ME/CFS Inflammation In the Brain.
In this video Dr Younger describes his ongoing research that builds on his previously published work that found higher brain temperatures in people with ME/CFS, which he says is indicative of inflammation. Research includes NIH funded replication of the brain temperature study with a larger group of patients; developing new methods to learn about causes of the raised temperature, including activated microglia and what might be activating them; and clinical trials of possible treatments.
Video here (duration 1 hour) Thread with summary here
UK - Physios for ME are doing an interview-based study exploring the use of transcutaneous vagus nerve stimulation by people with ME. 'Data collection is ongoing, and we would like to talk to more people, particularly those who did not find any benefits.'
Article with contact details here Thread here
NIH The NIH has contacted participants of a previous research study to announce a new spin-off study of mitochondrial function in muscle tissue in ME/CFS.
Thread here
Germany
It has been reported that Berlin Cures no longer wants to make a commitment to make their drug BC007 available for a ME/CFS study. The company seems to focus on a multicenter trial for Long Covid.
Tweet here Thread here
The Guardian Can our mitochondria help to beat long Covid?
Dr. David Systrom are among those interviewed and says: "In both ME/CFS and long Covid it's most likely that these are acquired forms of mitochondrial dysfunction, perhaps related to the initial infection itself or an autoimmune response to a virus or both". The article mentions an ongoing clinical trial at Oxford University on an amino acid cocktail (AXA1125) as treatment for fatigue.
Article here Thread here
Sweden Funding announcement by the Swedish Cancer Society:
Infections and autoimmunity: risk factors for chronic fatigue syndrome and subsequent B cell lymphoma and chronic lymphocytic leukemia development
Anders Rosén, Linköping University, Sweden
Details here Thread here
...............
Coming Events
USA "White House and HHS Call on Reports Addressing the Long-Term Effects of COVID-19"
A briefing on the status of plans to address Long COVID will be held on Friday, July 15, at 4 PM Eastern Time. Registration required.
Register here Details here Thread here
...............
Research and commentary
Journal of General Internal Medicine
“Bias in Exercise Trials for ME/CFS: the Importance of Objective Outcomes and Long-term Follow-up”. In this excellent letter, Michiel Tack criticises a paper by Sharpe and colleagues that claimed graded exercise therapy and cognitive behavioural therapy are effective treatments for ME/CFS. Robert Saunders has already written a letter which hasn’t been published yet by the journal. Sharpe and colleagues have written a brief response to the letters by Tack and Saunders.
Letter Tack here Response Sharpe et al. here Thread here
BJ Psych Open (a journal of the Royal College of Psychiatrists)
"Why Should ACT Work When CBT Has Failed? a Study Assessing Acceptability and Feasibility of Acceptance and Commitment Therapy (ACT) for Paediatric Patients With CFS/ME" by Crawley et al.
19 young people for whom CBT was ineffective had several sessions of ACT. 4 dropped out. 12 interviewed found the treatment acceptable.
The authors open the abstract with incorrect information that NICE recommends CBT/GET, and a unsubstantiated claim that only 15% do not fully recover within a year of treatment with the clinic's CBT for fatigue.
Paper here Thread here
Sports Medicine
"The use of oxygen as a possible screening biomarker for the diagnosis of chronic fatigue" by Pifarré et al
22 women with CFS and 22 healthy controls did a single CPET (cardiopulmonary exercise test). Three factors related to oxygen consumption were combined mathematically to form what the authors say could be used as a screening biomarker for CFS. However, this would need to be replicated in larger samples and with controls matched for fitness.
Paper here Thread here
Journal of Translational Medicine
"Oxaloacetate Treatment For Mental And Physical Fatigue In ME/CFS and Long-COVID fatigue patients: a non-randomized controlled clinical trial" by Cash and Kaufman
From the conclusion: 'This small, non-randomized open-label dose escalating “Proof-of-Concept” clinical trial yielded impressive highly significant improvements in fatigue in both ME/CFS patients and Long-COVID patients.'
However, claims made for efficacy based on the Chalder Fatigue questionnaire were not supported by any significant improvement on the Fatigue Severity Scale, and the data used as the placebo comparator for this 6 week open label trial was from an unrelated trial over 26 weeks.
Paper here Thread here
Long Covid research
Cell "Mild respiratory COVID can cause multi-lineage neural cell and myelin dysregulation" by Monje et al. (17 authors include Nath and Putrino)
In this study partly in mice and partly in humans, the authors conclude:
'These findings illustrate similar neuropathophysiology after cancer therapy and respiratory SARS-CoV-2 infection which may contribute to cognitive impairment following even mild COVID.'
Paper here Thread here
..............
S4ME social media: Facebook, Twitter and YouTube
For next week's news go to this thread:
News in Brief - July 2022
News in Brief - July 2022