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News in Brief - July 2022
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Week beginning 4th July 2022
News, articles, advocacy
Australia The Victoria state government website BetterHealth has an excellent guide on CFS. It includes PEM as the core feature, and recommends pacing and rest.
Webpage here Thread here
Scotland "ME/CFS NICE guideline: stakeholder review" by the Scottish Government Healthcare Quality and Improvement Directorate
'An independently-produced stakeholder review of the NICE guideline on ME/CFS. It makes recommendations regarding the implementation of the guideline in Scotland, and identifying and addressing priorities for service improvement in ME/CFS care.'
Document here Thread here
Electric Lit Sooner or Later, We'll All Belong to the Kingdom of the Sick
Interview with author Meghan O'Rourke on her book "The invisible kingdom" about chronic diseases as autoimmune disease, ME/CFS, chronic Lyme disease, fibromyalgia, Long Covid and more. "One of the central questions in my book is, why is it so hard for people with these kinds of diseases to get a diagnosis? One of the answers I came to was that this paradigm of heterogeneous response to infection isn’t fully understood, and we haven’t availed ourselves of the tools to diagnose, treat, and help support these patients."
Article here Thread here
Valerie Eliot Smith The Poisoned Well: a history of ME in 20 tweets
In this blog post barrister Valerie Eliot Smith shares a Twitter thread she wrote for the International ME Awareness month providing a summary of the history of ME and why we're not at a better place today. "... this painful history is not being acknowledged on a scale which properly reflects the appalling and now irreparable damage caused to the patient community over the last 50 years".
Article here Thread here
Byline Times Are We Giving the Wrong Advice to People with Long COVID?
About Long Covid patients being advised graded exercise therapy in NHS despite having PEM. Mentions comparisons with ME and that the new NICE guidelines now excludes GET as treatment.
Article here Thread here
The Guardian Who's clapping now? UK healthcare workers with long Covid have been abandoned
Opinion piece by Kelly Fearnley and Shaun Peter Qureshi on the shortsightedness of not supporting NHS workers with long Covid.
Article here Thread here
USA A document with recommendations for research priorities, design, and oversight for Long Covid has been created by a team of patient-led organizations. A government briefing on this topic (White House and HHS Call on Reports Addressing the Long-Term Effects of COVID-19) is scheduled for July 15 at 4 PM Eastern Time.
Webinar registration here Document (PDF) here Thread here
Trial by Error by David Tuller A Letter About the Inflated Prevalence Rate of Functional Neurological Disorder
About how experts in functional neurological disorders (FND) tend to exaggerate its prevalence by ignoring diagnostic criteria. Includes a letter from Tuller to a Yale professor who in a recent paper claimed FND is diagnosed in 16% of outpatient neurology consultations.
Article here Thread here
................
Research news
USA A recording of the 2022 Institute for Neuro-Immune Medicine (INIM) Conference, held on June 10, has been posted to YouTube. The slides are also available.
Video here Thread here
Bateman Horne Center A new blog post "Why the 10-Minute NASA Lean Test?" discusses their recent paper 'Orthostatic Challenge Causes Distinctive Symptomatic, Hemodynamic and Cognitive Responses in Long COVID and ME/CFS'.
Paper here Blog post here Thread here
Australia Griffith University Queensland National Centre for Neuroimmunology and Emerging Diseases is recruiting people with ME/CFS, other post viral sympoms and healthy controls for a study 'Genotyping analysis in ME/CFS'.
Details here Thread here
DecodeME – A ‘Treasure Map’ By Professor Chris Ponting and Simon McGrath. The article, also available as a podcast, uses the metaphor of a treasure map that the researchers hope will lead to specific areas for future research, which may in turn lead to treatments to test.
Article here Thread here
WSWS An interview with microbiologist Dr. Diane E. Griffin on Long COVID and viral RNA persistence
Dr. Griffin is an expert in host immune responses to viral infections and has published a paper reviewing why viral RNA persists in hosts post acute infections. She is hopeful research into Long COVID will provide an understanding of lingering symptoms after apparent clearance of virus.
Article here Thread here
UK BMJ Open
"Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership" by van der Feltz-Cornelis et al.
Conditions included fatigue, but specifically not ME/CFS for which separate research priorities were published recently. Priorities listed include care pathways, clinician training, and other general topics relating to patient care. No specific approaches to diagnosis, treatment or biomedical research are included, leaving it open for those wishing to justify more psychological research.
Paper here Thread here
.................
Research
European Society of Medicine Medical Research Archives
Two papers from the same research team:
"Comparison of the Degree of Deconditioning in ME/CFS Patients with and without Orthostatic Intolerance" by van Campen & Visser
18 healthy controls (HC) and 122 ME/CFS patients without hypotension or tachycardia on tilt testing were studied. Orthostatic intolerance was assessed with tilt table testing of cerebral blood flow(CBF) and cardiac index (CI) and deconditioning with a CPET. The abstract concludes:
'In ME/CFS patients without hypotension or tachycardia there is no relation between the %VO2 peak during CPET and the %CBF and %CI reduction during tilt testing, whether or not patients have an abnormal CBF reduction during tilt testing. It suggests again that deconditioning does not play an important role in OI.'
Paper here Thread here
"The higher resting heart rate in ME/CFS patients compared to healthy controls: relation with stroke volume" by van Campen & Visser
Data from 474 ME/CFS patients who had been referred for tilt table testing were analysed, 314 with a normal heart rate and blood pressure response and 160 with POTS during tilt-testing, and 56 healthy controls. From the conclusion: 'Patients and healthy controls showed a significant and inverse relation between the SVI (stroke volume index) and heart rate at rest. [...] The difference of patients with heart rate above the upper limit versus between the upper limit and lower limit deserves further investigation and may have therapeutic implications.'
Paper here Thread here
.................
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
Australia The Victoria state government website BetterHealth has an excellent guide on CFS. It includes PEM as the core feature, and recommends pacing and rest.
Webpage here Thread here
Scotland "ME/CFS NICE guideline: stakeholder review" by the Scottish Government Healthcare Quality and Improvement Directorate
'An independently-produced stakeholder review of the NICE guideline on ME/CFS. It makes recommendations regarding the implementation of the guideline in Scotland, and identifying and addressing priorities for service improvement in ME/CFS care.'
Document here Thread here
Electric Lit Sooner or Later, We'll All Belong to the Kingdom of the Sick
Interview with author Meghan O'Rourke on her book "The invisible kingdom" about chronic diseases as autoimmune disease, ME/CFS, chronic Lyme disease, fibromyalgia, Long Covid and more. "One of the central questions in my book is, why is it so hard for people with these kinds of diseases to get a diagnosis? One of the answers I came to was that this paradigm of heterogeneous response to infection isn’t fully understood, and we haven’t availed ourselves of the tools to diagnose, treat, and help support these patients."
Article here Thread here
Valerie Eliot Smith The Poisoned Well: a history of ME in 20 tweets
In this blog post barrister Valerie Eliot Smith shares a Twitter thread she wrote for the International ME Awareness month providing a summary of the history of ME and why we're not at a better place today. "... this painful history is not being acknowledged on a scale which properly reflects the appalling and now irreparable damage caused to the patient community over the last 50 years".
Article here Thread here
Byline Times Are We Giving the Wrong Advice to People with Long COVID?
About Long Covid patients being advised graded exercise therapy in NHS despite having PEM. Mentions comparisons with ME and that the new NICE guidelines now excludes GET as treatment.
Article here Thread here
The Guardian Who's clapping now? UK healthcare workers with long Covid have been abandoned
Opinion piece by Kelly Fearnley and Shaun Peter Qureshi on the shortsightedness of not supporting NHS workers with long Covid.
Article here Thread here
USA A document with recommendations for research priorities, design, and oversight for Long Covid has been created by a team of patient-led organizations. A government briefing on this topic (White House and HHS Call on Reports Addressing the Long-Term Effects of COVID-19) is scheduled for July 15 at 4 PM Eastern Time.
Webinar registration here Document (PDF) here Thread here
Trial by Error by David Tuller A Letter About the Inflated Prevalence Rate of Functional Neurological Disorder
About how experts in functional neurological disorders (FND) tend to exaggerate its prevalence by ignoring diagnostic criteria. Includes a letter from Tuller to a Yale professor who in a recent paper claimed FND is diagnosed in 16% of outpatient neurology consultations.
Article here Thread here
................
Research news
USA A recording of the 2022 Institute for Neuro-Immune Medicine (INIM) Conference, held on June 10, has been posted to YouTube. The slides are also available.
Video here Thread here
Bateman Horne Center A new blog post "Why the 10-Minute NASA Lean Test?" discusses their recent paper 'Orthostatic Challenge Causes Distinctive Symptomatic, Hemodynamic and Cognitive Responses in Long COVID and ME/CFS'.
Paper here Blog post here Thread here
Australia Griffith University Queensland National Centre for Neuroimmunology and Emerging Diseases is recruiting people with ME/CFS, other post viral sympoms and healthy controls for a study 'Genotyping analysis in ME/CFS'.
Details here Thread here
DecodeME – A ‘Treasure Map’ By Professor Chris Ponting and Simon McGrath. The article, also available as a podcast, uses the metaphor of a treasure map that the researchers hope will lead to specific areas for future research, which may in turn lead to treatments to test.
Article here Thread here
WSWS An interview with microbiologist Dr. Diane E. Griffin on Long COVID and viral RNA persistence
Dr. Griffin is an expert in host immune responses to viral infections and has published a paper reviewing why viral RNA persists in hosts post acute infections. She is hopeful research into Long COVID will provide an understanding of lingering symptoms after apparent clearance of virus.
Article here Thread here
UK BMJ Open
"Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership" by van der Feltz-Cornelis et al.
Conditions included fatigue, but specifically not ME/CFS for which separate research priorities were published recently. Priorities listed include care pathways, clinician training, and other general topics relating to patient care. No specific approaches to diagnosis, treatment or biomedical research are included, leaving it open for those wishing to justify more psychological research.
Paper here Thread here
.................
Research
European Society of Medicine Medical Research Archives
Two papers from the same research team:
"Comparison of the Degree of Deconditioning in ME/CFS Patients with and without Orthostatic Intolerance" by van Campen & Visser
18 healthy controls (HC) and 122 ME/CFS patients without hypotension or tachycardia on tilt testing were studied. Orthostatic intolerance was assessed with tilt table testing of cerebral blood flow(CBF) and cardiac index (CI) and deconditioning with a CPET. The abstract concludes:
'In ME/CFS patients without hypotension or tachycardia there is no relation between the %VO2 peak during CPET and the %CBF and %CI reduction during tilt testing, whether or not patients have an abnormal CBF reduction during tilt testing. It suggests again that deconditioning does not play an important role in OI.'
Paper here Thread here
"The higher resting heart rate in ME/CFS patients compared to healthy controls: relation with stroke volume" by van Campen & Visser
Data from 474 ME/CFS patients who had been referred for tilt table testing were analysed, 314 with a normal heart rate and blood pressure response and 160 with POTS during tilt-testing, and 56 healthy controls. From the conclusion: 'Patients and healthy controls showed a significant and inverse relation between the SVI (stroke volume index) and heart rate at rest. [...] The difference of patients with heart rate above the upper limit versus between the upper limit and lower limit deserves further investigation and may have therapeutic implications.'
Paper here Thread here
.................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 11th July 2022
News, articles, advocacy
Trial by Error by David Tuller
"Professor Crawley Promotes Acceptance and Commitment Therapy for CBT Failures"
A critical look at an abstract from Prof. Crawley and colleagues titled: "Why Should ACT Work When CBT Has Failed? a Study Assessing Acceptability and Feasibility of Acceptance and Commitment Therapy (ACT) for Paediatric Patients With Chronic Fatigue Syndrome/myalgic Encephalomyelitis (CFS/ME)".
Article here Thread here
"My Letter to BMJ Paediatrics Open About Missing Peer Reviews for Crawley Paper"
A letter to the Editor-in-Chief of the journal BMJ Paediatrics Open about missing links for the peer review history of a paper from last October with Prof. Crawley as senior author, asking if this indicates there was no peer review.
The paper, 'Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome' is the one on which the conference abstract referred to in the above item is based.
Paper here Letter here Thread here
Norway A majority of the National Committee for Medical and Health Research Ethics (NEM) surprisingly approved a controversial study on the alternative method Lightning Process as treatment for ME. The study is run by an LP coach. A minority of the committee believes the research fellow's strong self-interest and prominent role requires solid research methods for the study to have credibility and that potential for physical side effects has not been sufficiently taken into account.
NEM's assessment here (in Norwegian) Thread here
UK Forward ME "Report from a meeting with the Royal College of GPs on implementing the NICE Guideline on ME/CFS" Dr Charles Shepherd.
Background information was supplied to the RCGP before the meeting between 6 representatives of Forward ME and 3 from the RCGP. They discussed education of GP's and the role of primary care.
Report here Thread here
UK ME Association has been writing to health providers in England whose web based information about ME/CFS is still based on the old guidelines. Some have responded by taking down the outdated material.
Thread about Norfolk here
Lucy Writers Our Words, Our Lives: Writing and M.E.
The writers Nasim Marie Jafry, Laura Elliott, Henry Anderson, JP Seabright and Louise Kenward on writing with ME. "..finding a creative voice can be an antidote to the injustice suffered by M.E. patients or the inadequacy of mainstream narratives of sickness.."
Article here Thread here
Norway Media articles about a couple where the wife is suffering from severe ME. The municipality refuses to cover expenses for a stay at an institution with expertise on severe ME and says it's challenging to secure the patient's rights when they have to make decisions based on an outdated national ME guideline.
Articles here and here Thread here
Freakonomics, MD: "Could Long Covid Help Treat Other Chronic Illnesses?"
This podcast (episode 45) talks about ME/CFS research in the USA. It includes interviews with Winston Blick (ME/CFS patient), Ronald Davis, Anthony Komaroff, and Vicky Whittemore. A full transcript is also available.
Podcast here Thread here
Serbia
The Serbian website Klinika has published an interview withProf. Dr. Branislav Milovanović on ME/CFS. The article states that ME/CFS is a devastating multisystem illness while Prof. Dr. Milovanović highlights that a central problem is that doctors are not educated about ME/CFS during their training.
Article here Thread here
Australia ABC article "Long-COVID sufferers unable to access disability payments say they need more support"
Article here Thread here
4bc podcast "TeleHealth cuts to hit most vulnerable"
Anne Wilson, CEO of Emerge Australia calls for the Federal Government to reassess its plan to cut some telehealth services and charge the cost for longer consultations directly to patients.
Podcast here Thread here
BMJ
"Long covid patients travel abroad for expensive and experimental “blood washing”" by Madlen Davies
This investigation feature article reports many people spending tens of thousands of Euros on experimental treatments for Long Covid that treat microclots with HELP apheresis and anticlotting drugs. Some report no benefit, others claim it has led to significant improvement. There is concern about the commercialisation, lack of oversight, and promotion on social media of a treatment that can cause harm and for which there has not been any clinical trial.
Article here Thread here
............
Research news
Dr Baraniuk Webinar A recording of Dr James Baraniuk's May 17 webinar, "Nociplastic pain in ME/CFS and overlap with migraine & other disorders" is now available. Dr Baraniuk explains his research findings from MRI studies of exercise-induced changes in brain blood flow. 'We propose that dysfunction of these systems in the midbrain and brainstem may provide a unifying pathogenic mechanism to explain the heightened experiences of interoception in ME/CFS and allied conditions.' Duration 1:30 hours.
Video here Thread here
Open Medicine Foundation has released a video (1 hour) where Robert Phair, PhD, talks about the Itaconate Shunt Hypothesis for ME/CFS.
Video here Thread here
................
Coming Events
Genetics Symposium
Action for M.E. and the MRC Human Genetics Unit, University of Edinburgh are holding a genetics research symposium on 14th September 2022, at the University of Edinburgh and online. Open to all. More details to come later.
Thread here
.............
Research
Nature Translational Psychiatry
"No replication of previously reported association with genetic variants in the T cell receptor alpha (TRA) locus for ME/CFS" by Ueland et al.
In a genome wide association study of samples from over 2000 people with ME/CFS and healthy controls, variants previously reported in a much smaller study did not replicate. Some other possible genetic associations were found but did not reach statistical significance after correcting for multiple comparisons.
Paper here Thread here
Frontiers in Neurology
"Animal Models for Neuroinflammation and Potential Treatment Methods" by Tamura et al
In this mini review article the authors suggest that neuroinflammation in ME/CFS, as indicated in scanning studies, may lead to potential treatments using drugs that have an anti-inflammatory effect on neuroinflammation in animal models.
Article here Thread here
Springer Nature
"Could the kynurenine pathway be the key missing piece of ME/CFS complex puzzle?" by Kavyani et al.
This review article looks at some of the biomedical research findings for ME/CFS and the lack so far of consistent results. The authors hypothesise that abnormalities in the kynurenine pathway, which plays a central role in cellular energy production, may be involved.
Article here Thread here
Nature Scientific Reports
"Hyperbaric oxygen therapy improves neurocognitive functions & symptoms of post-COVID condition: randomized controlled trial" by Zilberman-Itskovich
After 40 sessions of HBOT or sham treatment, the treatment group showed some improvement in symptoms and in brain perfusion in some regions on MRI scans. The authors conclude 'HBOT’s beneficial effect may be attributed to increased brain perfusion and neuroplasticity in regions associated with cognitive and emotional roles'.
Paper here Thread here
Journal of Medical Internet Research
"The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome and Related Diseases: A Protocol for the You + ME Registry Research Platform" by Ramiller et al.
This paper talks about the patient data collected for Solve M.E.'s You + ME Registry.
Paper here Thread here
Healthcare
"Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research" Model by Baxter.
The 25% ME Group devised a questionnaire for members who had experience of being enterally and parenterally fed. The paper described the results of 5 patients who filled in the questionnaire.
Article here Thread here
ResearchGate
“Towards a critical psychology of chronic fatigue syndrome: Biopsychosocial narratives and UK welfare reform” by Joanne Hunt
This article takes a critical psychology perspective in examining how a biopsychosocial of ME/CFS narrative came to dominate, focusing on power structures created by associations between academic-clinicians, UK government and the health insurance industry in the context of UK welfare reform.
Article here Thread here
Brain
“Fear conditioning as a pathogenic mechanism in the postural tachycardia syndrome” by Norcliffe-Kauffmann
This article conducted a standing test on 28 patients with POTS and 21 controls. Patients had higher somatic vigilance and a more pronounced anticipatory tachycardia before assuming an upright posture. The authors conclude, controversially, that “these findings suggest that the postural tachycardia syndrome is a functional psychogenic disorder.”
Article here Thread here
.............
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
Trial by Error by David Tuller
"Professor Crawley Promotes Acceptance and Commitment Therapy for CBT Failures"
A critical look at an abstract from Prof. Crawley and colleagues titled: "Why Should ACT Work When CBT Has Failed? a Study Assessing Acceptability and Feasibility of Acceptance and Commitment Therapy (ACT) for Paediatric Patients With Chronic Fatigue Syndrome/myalgic Encephalomyelitis (CFS/ME)".
Article here Thread here
"My Letter to BMJ Paediatrics Open About Missing Peer Reviews for Crawley Paper"
A letter to the Editor-in-Chief of the journal BMJ Paediatrics Open about missing links for the peer review history of a paper from last October with Prof. Crawley as senior author, asking if this indicates there was no peer review.
The paper, 'Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome' is the one on which the conference abstract referred to in the above item is based.
Paper here Letter here Thread here
Norway A majority of the National Committee for Medical and Health Research Ethics (NEM) surprisingly approved a controversial study on the alternative method Lightning Process as treatment for ME. The study is run by an LP coach. A minority of the committee believes the research fellow's strong self-interest and prominent role requires solid research methods for the study to have credibility and that potential for physical side effects has not been sufficiently taken into account.
NEM's assessment here (in Norwegian) Thread here
UK Forward ME "Report from a meeting with the Royal College of GPs on implementing the NICE Guideline on ME/CFS" Dr Charles Shepherd.
Background information was supplied to the RCGP before the meeting between 6 representatives of Forward ME and 3 from the RCGP. They discussed education of GP's and the role of primary care.
Report here Thread here
UK ME Association has been writing to health providers in England whose web based information about ME/CFS is still based on the old guidelines. Some have responded by taking down the outdated material.
Thread about Norfolk here
Lucy Writers Our Words, Our Lives: Writing and M.E.
The writers Nasim Marie Jafry, Laura Elliott, Henry Anderson, JP Seabright and Louise Kenward on writing with ME. "..finding a creative voice can be an antidote to the injustice suffered by M.E. patients or the inadequacy of mainstream narratives of sickness.."
Article here Thread here
Norway Media articles about a couple where the wife is suffering from severe ME. The municipality refuses to cover expenses for a stay at an institution with expertise on severe ME and says it's challenging to secure the patient's rights when they have to make decisions based on an outdated national ME guideline.
Articles here and here Thread here
Freakonomics, MD: "Could Long Covid Help Treat Other Chronic Illnesses?"
This podcast (episode 45) talks about ME/CFS research in the USA. It includes interviews with Winston Blick (ME/CFS patient), Ronald Davis, Anthony Komaroff, and Vicky Whittemore. A full transcript is also available.
Podcast here Thread here
Serbia
The Serbian website Klinika has published an interview withProf. Dr. Branislav Milovanović on ME/CFS. The article states that ME/CFS is a devastating multisystem illness while Prof. Dr. Milovanović highlights that a central problem is that doctors are not educated about ME/CFS during their training.
Article here Thread here
Australia ABC article "Long-COVID sufferers unable to access disability payments say they need more support"
Article here Thread here
4bc podcast "TeleHealth cuts to hit most vulnerable"
Anne Wilson, CEO of Emerge Australia calls for the Federal Government to reassess its plan to cut some telehealth services and charge the cost for longer consultations directly to patients.
Podcast here Thread here
BMJ
"Long covid patients travel abroad for expensive and experimental “blood washing”" by Madlen Davies
This investigation feature article reports many people spending tens of thousands of Euros on experimental treatments for Long Covid that treat microclots with HELP apheresis and anticlotting drugs. Some report no benefit, others claim it has led to significant improvement. There is concern about the commercialisation, lack of oversight, and promotion on social media of a treatment that can cause harm and for which there has not been any clinical trial.
Article here Thread here
............
Research news
Dr Baraniuk Webinar A recording of Dr James Baraniuk's May 17 webinar, "Nociplastic pain in ME/CFS and overlap with migraine & other disorders" is now available. Dr Baraniuk explains his research findings from MRI studies of exercise-induced changes in brain blood flow. 'We propose that dysfunction of these systems in the midbrain and brainstem may provide a unifying pathogenic mechanism to explain the heightened experiences of interoception in ME/CFS and allied conditions.' Duration 1:30 hours.
Video here Thread here
Open Medicine Foundation has released a video (1 hour) where Robert Phair, PhD, talks about the Itaconate Shunt Hypothesis for ME/CFS.
Video here Thread here
................
Coming Events
Genetics Symposium
Action for M.E. and the MRC Human Genetics Unit, University of Edinburgh are holding a genetics research symposium on 14th September 2022, at the University of Edinburgh and online. Open to all. More details to come later.
Thread here
.............
Research
Nature Translational Psychiatry
"No replication of previously reported association with genetic variants in the T cell receptor alpha (TRA) locus for ME/CFS" by Ueland et al.
In a genome wide association study of samples from over 2000 people with ME/CFS and healthy controls, variants previously reported in a much smaller study did not replicate. Some other possible genetic associations were found but did not reach statistical significance after correcting for multiple comparisons.
Paper here Thread here
Frontiers in Neurology
"Animal Models for Neuroinflammation and Potential Treatment Methods" by Tamura et al
In this mini review article the authors suggest that neuroinflammation in ME/CFS, as indicated in scanning studies, may lead to potential treatments using drugs that have an anti-inflammatory effect on neuroinflammation in animal models.
Article here Thread here
Springer Nature
"Could the kynurenine pathway be the key missing piece of ME/CFS complex puzzle?" by Kavyani et al.
This review article looks at some of the biomedical research findings for ME/CFS and the lack so far of consistent results. The authors hypothesise that abnormalities in the kynurenine pathway, which plays a central role in cellular energy production, may be involved.
Article here Thread here
Nature Scientific Reports
"Hyperbaric oxygen therapy improves neurocognitive functions & symptoms of post-COVID condition: randomized controlled trial" by Zilberman-Itskovich
After 40 sessions of HBOT or sham treatment, the treatment group showed some improvement in symptoms and in brain perfusion in some regions on MRI scans. The authors conclude 'HBOT’s beneficial effect may be attributed to increased brain perfusion and neuroplasticity in regions associated with cognitive and emotional roles'.
Paper here Thread here
Journal of Medical Internet Research
"The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome and Related Diseases: A Protocol for the You + ME Registry Research Platform" by Ramiller et al.
This paper talks about the patient data collected for Solve M.E.'s You + ME Registry.
Paper here Thread here
Healthcare
"Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research" Model by Baxter.
The 25% ME Group devised a questionnaire for members who had experience of being enterally and parenterally fed. The paper described the results of 5 patients who filled in the questionnaire.
Article here Thread here
ResearchGate
“Towards a critical psychology of chronic fatigue syndrome: Biopsychosocial narratives and UK welfare reform” by Joanne Hunt
This article takes a critical psychology perspective in examining how a biopsychosocial of ME/CFS narrative came to dominate, focusing on power structures created by associations between academic-clinicians, UK government and the health insurance industry in the context of UK welfare reform.
Article here Thread here
Brain
“Fear conditioning as a pathogenic mechanism in the postural tachycardia syndrome” by Norcliffe-Kauffmann
This article conducted a standing test on 28 patients with POTS and 21 controls. Patients had higher somatic vigilance and a more pronounced anticipatory tachycardia before assuming an upright posture. The authors conclude, controversially, that “these findings suggest that the postural tachycardia syndrome is a functional psychogenic disorder.”
Article here Thread here
.............
S4ME social media: Facebook, Twitter and YouTube
Last edited:
Week beginning 18th July 2022
News, articles, advocacy
USA The CDC has posted a data collection proposal for public comments, "School-Based Active Surveillance (SBAS) of ME/CFS Among Schoolchildren." Deadline for comments is Sept. 20, 2022.
Website here PDF here Thread here
Trial by Error by David Tuller Mom Speaks Out About NHS "Abuse" of Daughter; Norway Approves Lightning Process Study
On an article from The Times about a teenager with severe ME who is experiencing an abusive hospital stay. "Parents and kids caught in the grips of practitioners at National Health Service facilities often decline to speak out about mistreatment, for fear of medical and legal repercussions. In this case, the mother, Joanne McKee, has taken the opposite step and gone public".
Also on the surprising ethical approval of a study on LP as treatment for ME "even though the proposal remains riddled with methodological and ethical problems" (see last week's news brief).
Article here Thread here
UK ME Association "MEA writes to Torbay and South Devon ME/CFS service about their ‘Fact Sheet’ on ME/CFS"
Dr Charles Shepherd continues his excellent work sending letters to NHS regional ME/CFS services about their outdated online resources.
MEA article with letter here Thread here
USA The National Academies of Sciences, Engineering, and Medicine has published a lengthy report titled, "Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop" (pre-publication copy)
Report here Summary here Thread here
The Lancet "Improving the engagement of scientists with the media" by Philip Ball.
In his review of Fiona Fox's (Science Media Centre) recent book, Ball uncritically quotes Fox's inaccurate and derogatory characterisation of ME patients, and compounds the offence by placing this in a paragraph about violent animal rights extremists.
Article here (paywalled) Thread here
The Lancet A letter from USA by Youchai Re'em
A psychiatrist shares his thoughts based on consultations with Long Covid patients and writes about challenges the patients are facing. "While I can offer support or psychiatric treatment, I cannot offer much more. Who treats the crushing post-exertional symptoms, immune dysregulation, or vasculopathy?".
Article here (Paywalled) Tweet with whole article here Thread here
The Pharmaceutical Journal Chronic fatigue: it is time to take its treatment more seriously
Includes an interview with Dr. Julia Newton who says there's little research on ME, despite fatigue being a common phenomenon. Mentions the updated NICE guidelines and removal of GET/CBT as treatment approaches. Also mentions some current research projects. Unfortunately the article seems to confuse tiredness and fatigue with ME.
Article here Thread here
California Society of Anesthesiologists Experiencing Long Covid as a physician and a patient
Zeest Khan, MD has been diagnosed with ME/CFS after having been infected with Covid-19. She shares her experiences as patient and offers colleagues information she wants them to have in order to be the doctor these patients need. "Given the scale of Covid-19, we cannot disregard its disabling aftermath; we would be wrong to continue dismissing other virally-mediated disorders like ME/CFS".
Article here Thread here
Australia Sydney Morning Herald "‘Sobering, staggering numbers’: Half a million Australians to get long COVID in coming months" by Kate Aubusson
'Australia is facing a surge in long COVID-19 cases, say doctors at Sydney’s St Vincent’s Hospital, who warned that the burden of the protracted disease would be borne chiefly by women and the critical healthcare and education sectors where they comprise the bulk of employees.'
Article here Thread here
...................
Research news
ME Research UK currently has an open call for applications for research grants. 'We welcome proposals from researchers wishing to investigate the causes, consequences and treatment of ME/CFS'.
The deadline for submissions for this call is 5 p.m. BST on Friday 16 September 2022.
Details here Thread here
Australia Griffith University is recruiting to a study 'Ion Channel Dysfunction in ME/CFS'. Participants donate a blood sample and fill in an online questionnaire.
Details here Thread here
Video presentations are available on Facebook by Thapaliya and Barnden
related to this study published in 2021: 'Diffusion tensor imaging reveals neuronal microstructural changes in ME/CFS' by Thapaliya et al
Thread with links here
Video presentations from an NCNED conference in 2021 are now available on Facebook:
"Gastrointestinal symptoms, diet and health-related quality of life in ME/CFS" by Breanna Weigel. Duration 17 minutes
Thread with link here
"Disability Measures & their Potential Applications for ME/CFS patients" by Rebekah Maksoud. Duration 15-minutes.
Thread with link here
Solve M.E. has put recordings of two of their recent webinars online:
"Is There a Herpesviruses-Related Antibody Signature In Patients With ME/CFS?"
Presentation by Ramsay Grant researcher Nuno Sepúlveda, PhD. Recorded on July 13, 2022.
Video here Thread here
"New Hope for Diagnosing and Treating Post-Infection Illnesses"
Discussion with Dr. Steven Deeks and Dr. David Hardy. Recorded on July 21, 2022.
Video here Thread here
USA Open Medicine Foundation (OMF) has posted another research update. In this video Ron Davis and Janet Dafoe discuss how DNA & RNA technology is being used to advance research into ME/CFS, Long Covid and other diseases.
Video here Thread here
...................
Research
BMC Neurology
"Protocol: DecodeME: community recruitment for a large genetics study of ME/CFS" by @Andy Devereux-Cooke et al
This will be the largest Genome Wide Association Study (GWAS) for ME/CFS, and is hoped will provide clues for future research directions. The aim is to recruit 20,000 people with ME/CFS and 5,000 with Long Covid also diagnosed with ME/CFS.
This article describes the process of planning, ethics approval, recruitment, diagnosis, collection of data and samples, and the plans for analysis and publication. The authors include people with ME/CFS and carers who are part of the research team.
Article here DecodeME website here Thread here
International Journal of Molecular Sciences
"Metabolomic Evidence for Peroxisomal Dysfunction in ME/CFS" by Lipkin et al.
Metabolomic analysis of plasma from 106 ME/CFS cases and 91 controls.
The ME/CFS group had significantly decreased levels of plasmalogens and phospholipid ethers, phosphatidylcholines and sphingomyelins, and elevated levels of dicarboxylic acids. Machine learning algorithms differentiated ME/CFS or subgroups from controls. 'Our findings provide the first metabolomic evidence of peroxisomal dysfunction, and are consistent with dysregulation of lipid remodeling and the tricarboxylic acid cycle. These findings, if validated in other cohorts, could provide new insights into the pathogenesis of ME/CFS...'
Paper here Thread here
Blog by John Duncan about this paper here Thread here
MedRxiv preprint (not yet peer reviewed)
"Multi-omics provide evidence for an anti-inflammatory immune signature and metabolic alterations in patients with Long COVID Syndrome – an exploratory study" by Kovarik et al.
A 'broad exploratory screening study' using plasma multi-omics on 3 groups - vaccinated and uninfected; symptom free post infection; and Long Covid. 'In summary, here we present evidence for a specific anti-inflammatory and highly characteristic metabolic signature in LCS which could serve for future diagnostic purposes and help to establish rational therapeutic interventions in these patients.' The authors suggest the metabolic finding is 'characteristic for CFS.'
Preprint here Thread here
Die Innere Medizin
“Post-COVID-Syndrom mit Fatigue und Belastungsintoleranz: Myalgische Enzephalomyelitis bzw. Chronisches Fatigue-Syndrom” by Renz-Polster & Scheibenbogen
In this German article, Carmen Scheibenbogen discusses ME/CFS and Post-COVID syndrome. The paper states that “In the next few years, therefore, a doubling of the number of people affected by ME/CFS must be expected.”
Article here Thread here
Frontiers in Medicine
“The Qigong of Prolong Life With Nine Turn Method Relieve Fatigue, Sleep, Anxiety and Depression in Patients With Chronic Fatigue Syndrome: A Randomized Controlled Clinical Study”
This Chinese randomized trial investigated the effect of Prolong Life with Nine Turn Method (PLWNT) on ME/CFS symptoms compared to cognitive behavioral therapy (CBT). No significant differences between groups were found.
Article here Thread here
Medical Humanities
“Making space for disability studies within a structurally competent medical curriculum: reflections on long Covid” by Joanne Hunt
This article discusses long Covid through a disability studies lens. It briefly mentions ME/CFS and reported harms resulting from graded exercise therapy, stating: “these harms could thus equally be understood as arising from a lack of co-production and patientcentredness at all levels of the health system.”
Article here Thread here
...................
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
USA The CDC has posted a data collection proposal for public comments, "School-Based Active Surveillance (SBAS) of ME/CFS Among Schoolchildren." Deadline for comments is Sept. 20, 2022.
Website here PDF here Thread here
Trial by Error by David Tuller Mom Speaks Out About NHS "Abuse" of Daughter; Norway Approves Lightning Process Study
On an article from The Times about a teenager with severe ME who is experiencing an abusive hospital stay. "Parents and kids caught in the grips of practitioners at National Health Service facilities often decline to speak out about mistreatment, for fear of medical and legal repercussions. In this case, the mother, Joanne McKee, has taken the opposite step and gone public".
Also on the surprising ethical approval of a study on LP as treatment for ME "even though the proposal remains riddled with methodological and ethical problems" (see last week's news brief).
Article here Thread here
UK ME Association "MEA writes to Torbay and South Devon ME/CFS service about their ‘Fact Sheet’ on ME/CFS"
Dr Charles Shepherd continues his excellent work sending letters to NHS regional ME/CFS services about their outdated online resources.
MEA article with letter here Thread here
USA The National Academies of Sciences, Engineering, and Medicine has published a lengthy report titled, "Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop" (pre-publication copy)
Report here Summary here Thread here
The Lancet "Improving the engagement of scientists with the media" by Philip Ball.
In his review of Fiona Fox's (Science Media Centre) recent book, Ball uncritically quotes Fox's inaccurate and derogatory characterisation of ME patients, and compounds the offence by placing this in a paragraph about violent animal rights extremists.
Article here (paywalled) Thread here
The Lancet A letter from USA by Youchai Re'em
A psychiatrist shares his thoughts based on consultations with Long Covid patients and writes about challenges the patients are facing. "While I can offer support or psychiatric treatment, I cannot offer much more. Who treats the crushing post-exertional symptoms, immune dysregulation, or vasculopathy?".
Article here (Paywalled) Tweet with whole article here Thread here
The Pharmaceutical Journal Chronic fatigue: it is time to take its treatment more seriously
Includes an interview with Dr. Julia Newton who says there's little research on ME, despite fatigue being a common phenomenon. Mentions the updated NICE guidelines and removal of GET/CBT as treatment approaches. Also mentions some current research projects. Unfortunately the article seems to confuse tiredness and fatigue with ME.
Article here Thread here
California Society of Anesthesiologists Experiencing Long Covid as a physician and a patient
Zeest Khan, MD has been diagnosed with ME/CFS after having been infected with Covid-19. She shares her experiences as patient and offers colleagues information she wants them to have in order to be the doctor these patients need. "Given the scale of Covid-19, we cannot disregard its disabling aftermath; we would be wrong to continue dismissing other virally-mediated disorders like ME/CFS".
Article here Thread here
Australia Sydney Morning Herald "‘Sobering, staggering numbers’: Half a million Australians to get long COVID in coming months" by Kate Aubusson
'Australia is facing a surge in long COVID-19 cases, say doctors at Sydney’s St Vincent’s Hospital, who warned that the burden of the protracted disease would be borne chiefly by women and the critical healthcare and education sectors where they comprise the bulk of employees.'
Article here Thread here
...................
Research news
ME Research UK currently has an open call for applications for research grants. 'We welcome proposals from researchers wishing to investigate the causes, consequences and treatment of ME/CFS'.
The deadline for submissions for this call is 5 p.m. BST on Friday 16 September 2022.
Details here Thread here
Australia Griffith University is recruiting to a study 'Ion Channel Dysfunction in ME/CFS'. Participants donate a blood sample and fill in an online questionnaire.
Details here Thread here
Video presentations are available on Facebook by Thapaliya and Barnden
related to this study published in 2021: 'Diffusion tensor imaging reveals neuronal microstructural changes in ME/CFS' by Thapaliya et al
Thread with links here
Video presentations from an NCNED conference in 2021 are now available on Facebook:
"Gastrointestinal symptoms, diet and health-related quality of life in ME/CFS" by Breanna Weigel. Duration 17 minutes
Thread with link here
"Disability Measures & their Potential Applications for ME/CFS patients" by Rebekah Maksoud. Duration 15-minutes.
Thread with link here
Solve M.E. has put recordings of two of their recent webinars online:
"Is There a Herpesviruses-Related Antibody Signature In Patients With ME/CFS?"
Presentation by Ramsay Grant researcher Nuno Sepúlveda, PhD. Recorded on July 13, 2022.
Video here Thread here
"New Hope for Diagnosing and Treating Post-Infection Illnesses"
Discussion with Dr. Steven Deeks and Dr. David Hardy. Recorded on July 21, 2022.
Video here Thread here
USA Open Medicine Foundation (OMF) has posted another research update. In this video Ron Davis and Janet Dafoe discuss how DNA & RNA technology is being used to advance research into ME/CFS, Long Covid and other diseases.
Video here Thread here
...................
Research
BMC Neurology
"Protocol: DecodeME: community recruitment for a large genetics study of ME/CFS" by @Andy Devereux-Cooke et al
This will be the largest Genome Wide Association Study (GWAS) for ME/CFS, and is hoped will provide clues for future research directions. The aim is to recruit 20,000 people with ME/CFS and 5,000 with Long Covid also diagnosed with ME/CFS.
This article describes the process of planning, ethics approval, recruitment, diagnosis, collection of data and samples, and the plans for analysis and publication. The authors include people with ME/CFS and carers who are part of the research team.
Article here DecodeME website here Thread here
International Journal of Molecular Sciences
"Metabolomic Evidence for Peroxisomal Dysfunction in ME/CFS" by Lipkin et al.
Metabolomic analysis of plasma from 106 ME/CFS cases and 91 controls.
The ME/CFS group had significantly decreased levels of plasmalogens and phospholipid ethers, phosphatidylcholines and sphingomyelins, and elevated levels of dicarboxylic acids. Machine learning algorithms differentiated ME/CFS or subgroups from controls. 'Our findings provide the first metabolomic evidence of peroxisomal dysfunction, and are consistent with dysregulation of lipid remodeling and the tricarboxylic acid cycle. These findings, if validated in other cohorts, could provide new insights into the pathogenesis of ME/CFS...'
Paper here Thread here
Blog by John Duncan about this paper here Thread here
MedRxiv preprint (not yet peer reviewed)
"Multi-omics provide evidence for an anti-inflammatory immune signature and metabolic alterations in patients with Long COVID Syndrome – an exploratory study" by Kovarik et al.
A 'broad exploratory screening study' using plasma multi-omics on 3 groups - vaccinated and uninfected; symptom free post infection; and Long Covid. 'In summary, here we present evidence for a specific anti-inflammatory and highly characteristic metabolic signature in LCS which could serve for future diagnostic purposes and help to establish rational therapeutic interventions in these patients.' The authors suggest the metabolic finding is 'characteristic for CFS.'
Preprint here Thread here
Die Innere Medizin
“Post-COVID-Syndrom mit Fatigue und Belastungsintoleranz: Myalgische Enzephalomyelitis bzw. Chronisches Fatigue-Syndrom” by Renz-Polster & Scheibenbogen
In this German article, Carmen Scheibenbogen discusses ME/CFS and Post-COVID syndrome. The paper states that “In the next few years, therefore, a doubling of the number of people affected by ME/CFS must be expected.”
Article here Thread here
Frontiers in Medicine
“The Qigong of Prolong Life With Nine Turn Method Relieve Fatigue, Sleep, Anxiety and Depression in Patients With Chronic Fatigue Syndrome: A Randomized Controlled Clinical Study”
This Chinese randomized trial investigated the effect of Prolong Life with Nine Turn Method (PLWNT) on ME/CFS symptoms compared to cognitive behavioral therapy (CBT). No significant differences between groups were found.
Article here Thread here
Medical Humanities
“Making space for disability studies within a structurally competent medical curriculum: reflections on long Covid” by Joanne Hunt
This article discusses long Covid through a disability studies lens. It briefly mentions ME/CFS and reported harms resulting from graded exercise therapy, stating: “these harms could thus equally be understood as arising from a lack of co-production and patientcentredness at all levels of the health system.”
Article here Thread here
...................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 25th July 2022
News, articles, advocacy
Trial by Error by David Tuller
"A Conversation with Patient Advocate Adam "Beyonce Holes" Lowe"
Advocate and ME/CFS patient Adam Lowe who was part of the committee that developed the new NICE guidelines talks about recent developments as the ongoing implementation of the new guidelines, the new report from the All-Party Parliamentary Group on ME and former health minister Javid's call for increased effort for this disease.
Video here Thread here
Professor Chalder Reports CBT Does Not Work for Post-Stroke Fatigue, Calls for More Research
Despite negative results in a recent paper from Chalder et al on CBT as treatment for Post-Stroke Fatigue, the authors conclude another trial of same design is feasible. "If the funding world functioned normally, this sort of report about a feasibility study for an intervention would undermine the likelihood of obtaining support for a full-scale trial. Funders presumably want to invest in research that is likely to provide actionable findings".
Article here Thread here
UK Guardian Opinion: "I gave up hope of a cure for my chronic condition. And it’s made me happier than ever before"
Keith Kahn-Harris describes his 30 years living with ME/CFS. 'For 30 years, I tried to ‘fight’ it. In the end, I found relief in embracing my identity as a person with a disability.' He recognises that his experience would be very different if he had no support. 'Giving up hope requires a safety net. The challenge for our society is to enable others with chronic conditions and disabilities to give up hope without giving up everything else'. There are mixed views on the value of this type of media article in forum discussion.
Article here Thread here
UK ME Association is providing updates on responses to letters from Dr Shepherd asking local NHS providers to remove outdated online materials.
Thread with list here
...................
Research news
IACFSME Conference The 4 day virtual conference of the International Association for CFS/ME took place this week, with a series of workshops, keynote addresses, short presentations and poster presentations.
The details of events, along with initial reports on some sessions attended by forum representatives, are posted on 4 threads. Attendees will have access to videos of all the sessions in coming weeks, so further reports will be added when available. S4ME also live tweeted some sessions.
Twitter thread here
Day 1 workshops thread here
Day 2 talks including keynote David Systrom; metabolomics; immunology here
Day 3 including Keynote Akiko Iwasaki on Immunology of long COVID; provocation studies using 2 day CPET here
Day 4 including POTS; immunology; treatments; public health here
Open Medicine Foundation Dr Alain Moreau et al are planning a study called RASPBERRY-ME (an acronym). 'The overarching goal of RASPBERRY-ME project is the characterization of the biomolecular signature of ME using Label-free Raman Spectroscopy (RS) and machine learning models.'
Article here Thread here
Paolo Maccallini blog 'Tryptophan metabolites in cerebrospinal fluid of ME/CFS patients'
An analysis if data from a study by Baraniuk et al. concludes that there are no stasticially significant differences in tryptophan, kynurenine, serotonin, Kyn/Trp, and Ser/Trp in cerebrospinal fluid of 44 ME/CFS patients compared with 21 sedentary controls.
Thread on the Baraniuk study here Blog post here Thread here
...................
Psychosocial Research
International Journal of Behavioral Medicine
“Response Shift After Cognitive Behavioral Therapy Targeting Severe Fatigue: Explorative Analysis of Three Randomized Controlled Trials” by Müller et al.
The Dutch research team of Hans Knoop reports that CBT seems to induce response shift, a change in the meaning of patients’ self-evaluation, but that this did not affect the intervention effect.
Article here Thread here
Disability & Society
“Holistic or harmful? Examining socio-structural factors in the biopsychosocial model of chronic illness, ‘medically unexplained symptoms’ and disability.” By Joanne Hunt
Hunt criticizes a particular interpretation of the biopsychosocial model. She argues that it has caused harm to the chronically ill and that this harm derives from “an empirically unsubstantiated, neoliberal narrative emphasising the role of personal responsibility and effort in ‘recovery’ from ill-health.”
Article here Thread here
Quality of Life Research
“Assessing sleep and pain among adults with ME/CFS: psychometric evaluation of the PROMIS® sleep and pain short forms” by Yang et al.
This study used data from the Multi-Site ME/CFS study to evaluate the psychometric properties of pain and sleep questionnaires of the patient-reported outcome measurement information system® (PROMIS).
Article here Thread here
...................
Coming Events
UK DecodeME webinar Wednesday 3rd August, 3 - 4pm on Zoom and Facebook Live. 'You’re invited to the next DecodeME webinar. This webinar will be a chance to hear updates about the study and more about the DecodeME questionnaire. You can also have your questions answered.'
Register for webinar here Thread here
NIH The next NIH ME/CFS telebriefing is scheduled for August 26, 3:00 - 4:00 PM Eastern Time. The meeting will include updates from the NIH and a presentation by Lily Chu, vice president of IACFS/ME, on the IACFS/ME 2022 Virtual Medical and Scientific Conference. No registration required.
Zoom link here Thread here
...................
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
Trial by Error by David Tuller
"A Conversation with Patient Advocate Adam "Beyonce Holes" Lowe"
Advocate and ME/CFS patient Adam Lowe who was part of the committee that developed the new NICE guidelines talks about recent developments as the ongoing implementation of the new guidelines, the new report from the All-Party Parliamentary Group on ME and former health minister Javid's call for increased effort for this disease.
Video here Thread here
Professor Chalder Reports CBT Does Not Work for Post-Stroke Fatigue, Calls for More Research
Despite negative results in a recent paper from Chalder et al on CBT as treatment for Post-Stroke Fatigue, the authors conclude another trial of same design is feasible. "If the funding world functioned normally, this sort of report about a feasibility study for an intervention would undermine the likelihood of obtaining support for a full-scale trial. Funders presumably want to invest in research that is likely to provide actionable findings".
Article here Thread here
UK Guardian Opinion: "I gave up hope of a cure for my chronic condition. And it’s made me happier than ever before"
Keith Kahn-Harris describes his 30 years living with ME/CFS. 'For 30 years, I tried to ‘fight’ it. In the end, I found relief in embracing my identity as a person with a disability.' He recognises that his experience would be very different if he had no support. 'Giving up hope requires a safety net. The challenge for our society is to enable others with chronic conditions and disabilities to give up hope without giving up everything else'. There are mixed views on the value of this type of media article in forum discussion.
Article here Thread here
UK ME Association is providing updates on responses to letters from Dr Shepherd asking local NHS providers to remove outdated online materials.
Thread with list here
...................
Research news
IACFSME Conference The 4 day virtual conference of the International Association for CFS/ME took place this week, with a series of workshops, keynote addresses, short presentations and poster presentations.
The details of events, along with initial reports on some sessions attended by forum representatives, are posted on 4 threads. Attendees will have access to videos of all the sessions in coming weeks, so further reports will be added when available. S4ME also live tweeted some sessions.
Twitter thread here
Day 1 workshops thread here
Day 2 talks including keynote David Systrom; metabolomics; immunology here
Day 3 including Keynote Akiko Iwasaki on Immunology of long COVID; provocation studies using 2 day CPET here
Day 4 including POTS; immunology; treatments; public health here
Open Medicine Foundation Dr Alain Moreau et al are planning a study called RASPBERRY-ME (an acronym). 'The overarching goal of RASPBERRY-ME project is the characterization of the biomolecular signature of ME using Label-free Raman Spectroscopy (RS) and machine learning models.'
Article here Thread here
Paolo Maccallini blog 'Tryptophan metabolites in cerebrospinal fluid of ME/CFS patients'
An analysis if data from a study by Baraniuk et al. concludes that there are no stasticially significant differences in tryptophan, kynurenine, serotonin, Kyn/Trp, and Ser/Trp in cerebrospinal fluid of 44 ME/CFS patients compared with 21 sedentary controls.
Thread on the Baraniuk study here Blog post here Thread here
...................
Psychosocial Research
International Journal of Behavioral Medicine
“Response Shift After Cognitive Behavioral Therapy Targeting Severe Fatigue: Explorative Analysis of Three Randomized Controlled Trials” by Müller et al.
The Dutch research team of Hans Knoop reports that CBT seems to induce response shift, a change in the meaning of patients’ self-evaluation, but that this did not affect the intervention effect.
Article here Thread here
Disability & Society
“Holistic or harmful? Examining socio-structural factors in the biopsychosocial model of chronic illness, ‘medically unexplained symptoms’ and disability.” By Joanne Hunt
Hunt criticizes a particular interpretation of the biopsychosocial model. She argues that it has caused harm to the chronically ill and that this harm derives from “an empirically unsubstantiated, neoliberal narrative emphasising the role of personal responsibility and effort in ‘recovery’ from ill-health.”
Article here Thread here
Quality of Life Research
“Assessing sleep and pain among adults with ME/CFS: psychometric evaluation of the PROMIS® sleep and pain short forms” by Yang et al.
This study used data from the Multi-Site ME/CFS study to evaluate the psychometric properties of pain and sleep questionnaires of the patient-reported outcome measurement information system® (PROMIS).
Article here Thread here
...................
Coming Events
UK DecodeME webinar Wednesday 3rd August, 3 - 4pm on Zoom and Facebook Live. 'You’re invited to the next DecodeME webinar. This webinar will be a chance to hear updates about the study and more about the DecodeME questionnaire. You can also have your questions answered.'
Register for webinar here Thread here
NIH The next NIH ME/CFS telebriefing is scheduled for August 26, 3:00 - 4:00 PM Eastern Time. The meeting will include updates from the NIH and a presentation by Lily Chu, vice president of IACFS/ME, on the IACFS/ME 2022 Virtual Medical and Scientific Conference. No registration required.
Zoom link here Thread here
...................
S4ME social media: Facebook, Twitter and YouTube
For next week's news go to this thread:
News in Brief - August 2022
News in Brief - August 2022