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News in Brief - September 2021
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Week beginning 30th August 2021
News, articles and advocacy
UK DecodeME update
The DecodeME team has provided an update with the news that the project start date will be delayed for a few weeks in order to carry out further testing to ensure security and data protection at the study's web portal. Also included is the good news that the project has received the necessary ethics approval; and a picture of the 'spit kit' that will be sent to participants.
Thread with details here
New Zealand
GP Dr Cathy Stephenson presented to the RNZCGP General Practice Conference on 7th August. Title: "From Harm to Help: Promoting an evidence based shift in our understanding of ME/CFS"
The slides with audio of this excellent presentation are now available.
Slides and audio here (30 mins) Thread here
New Zealand Dr Lynette Hodges, an Exercise Physiologist and senior lecturer at Massey University, spoke at a research seminar in Christchurch about her research into the abnormal physiological response to exercise in ME/CFS.
Video here (35 minutes) Thread here
IACFSME 2021 Virtual Conference Conference coverage
"Emerging data point to underlying Autoimmunity in ME/CFS" in Medscape here
Report by dr. Sarah J. Dalziel and dr. Rosamund Vallings here
Thread here
USA Coverage from David Tuller and Medscape of the recently published US ME/CFS Clinician Coalition's guideline.
Trial by Error by David Tuller "While NICE Waffles, US Specialists Publish New Clinical Guidelines for ME/CFS" Article here
Medscape "Trending Clinical Topic: Chronic Fatigue Syndrome" Article here
Thread here
USA - CDC
Slides and a transcript are now available from the CDC ME/CFS Stakeholder Engagement and Communication (SEC) call held on May 13, 2021. The guest speaker, Dr. Dane B. Cook, discussed results from exercise testing in the Multi-Site Clinical Assessment of ME/CFS (MCAM) study. Results showed that when ME/CFS patients and controls were matched for physical fitness, the former were breathing slower but deeper during the exercise test.
Presentation here Slides here Transcript here Thread here
Marathon Mike
Marathon Mike is running a marathon in each of the 27 EU member countries to raise awareness of ME/CFS and funds for biomedical research. This time, he interviewed two ME/CFS patients in Germany: Johanne and Claudia, ahead of his race in the Hamburg Marathon on 12 September.
Article here Thread here
................
UK - NICE ME/CFS Guideline
Guidelines NICE announces roundtable discussion for paused ME/CFS guideline
Short article about the planned roundtable event by NICE "to better understand the issues raised during the guidelines consultation, in accordance with issues raised during the pre-publication period of the final guideline".
Article here Thread here
Science for ME letter to NICE.
On 30th August the S4ME management committee sent an email urging NICE to publish the guideline without further delay and asking a series of questions including the purpose, potential outcomes and practical arrangements of the roundtable meeting. "The announcement first of the pause and then of the roundtable, and the lack of clear explanations of the purpose, agenda and next steps has caused considerable concern to our members who are relying on the new guideline to enable them to access appropriate compassionate care."
Thread with the letter here
Trial by Error by David Tuller A Letter Urging NICE to Publish ME/CFS Guideline Without Delay
In this open letter to chief executive of NICE, Professor Gillian Leng, over 100 scientists, clinicians, academics and other experts call on NICE to publish the ME/CFS Guideline."Making changes at this late stage or cancelling publication altogether would represent a victory of vested professional interests over the rights of patients to receive care consistent with the available research."
Letter here Thread here
Physios for ME response to delayed NICE Guidelines
"The last minute delay to publication of the NICE Guidelines has shocked everyone involved in the process, including Physios for ME. As stakeholders we had already taken part in the lengthy and in-depth consultation process and we find it difficult to understand what more can be discussed given the finalised guidelines were based on a robust analysis of the current evidence base."
Response here Thread here
The Guardian "Withdrawal of planned guidance on ME upsets patients" Science correspondent Natalie Grover outlines the stated reasons for the pause in publication of the guideline, and some of the history. Grover quotes Jonathan Edwards, Michael Sharpe and others, but over emphasises the psychological versus physical, and patients versus scientist arguments.
Article here Thread here
Valerie Eliot Smith Legal opinion and legal advice: the "paused" NICE guidelines for "ME/CFS"
Barrister Valerie Eliot Smith's summary of the legal position surrounding the pause of the NICE guideline.
Article here Thread here
.................
Biomedical research
Journal of Translational Medicine
"Sex-specific plasma lipid profiles of ME/CFS patients and their association with pain, fatigue, and cognitive symptoms" by Nkiliza, Klimas et al
This study used lipidomic analysis on plasma from 50 each of patients and matched controls. Some sex specific differences were found, and some correlations with symptoms. The authors conclude that this 'suggests a possible role of these lipids in promoting immune dysfunction and inflammation which may be among the underlying factors driving the clinical presentation of fatigue, chronic pain, and cognitive difficulties in ill patients'.
Paper here Thread here
Frontiers in Systems Neuroscience
"Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Result in Sustained Improvement in ME/CFS" by Pereira, Bateman et al.
'InTiME sought to show that an acute dose of subcutaneous CT38s in ME/CFS patients, could safely induce sustained symptom improvement..'
A small open label trial with 14 people with ME/CFS using a range of different doses found some short term changes in self reported mean daily symptom score at lower infusion levels, but decreases in measured activity levels leave interpretation of the outcomes unclear. The abstract concludes 'The trial supports the hypothesis that CRFR2 is upregulated in ME/CFS, and that acute CRFR2 agonism may be a viable treatment approach warranting further study'.
The drug company Cortene's press release describes the results as 'preliminary evidence of a cure for ME/CFS'.
Paper here Thread here
Journal of the American College of Cardiology
"Chronic Fatigue Syndrome and Cardiovascular Disease: JACC State-of-the-Art Review" by Natelson et al
The authors summarise research evidence showing cardiovascular findings in CFS, highlighting 'Patients with ME/CFS typically have small hearts, low stroke volume, and low total blood volume, and some have OI.' They conclude that there is a need for more studies, includinging whether deconditioning is a factor.
Article here Thread here
................
Other research
Health Expectations
‘A life I can cope with’. An alternative model of cognitive behavioural therapy (CBT) for CFS/ME” by Clark & Holttum
The authors conducted interviews with 13 adults who had engaged in CBT at a specialist ME/CFS service. The type of CBT aimed at improved management of the illness, rather than increasing activities and challenging unhelpful beliefs.
Article here Thread here
................
Coming events
UK Sussex and Kent ME/CFS Society conference in Brighton on Friday afternoon 29th October. Speakers include Dr Jessica Eccles, Dr Alan Stewart, Dr Charlotte Thompson and NHS Sussex-wide CFS/ME Service clinicians.
Thread here
.................
Covid-19, Long Covid and ME
The Atlantic Long-Haulers are fighting for their future
In this brilliant in-depth article Ed Yong shows how academia has failed patients with ME and related conditions, and is now about to fail Long Covid patients unless the research moves forward with patients as partners.
Article here Thread here
The Scientist Mechanisms of Long COVID Remain Unknown but Data Are Rolling In
This article presents some current hypotheses about Long Covid and provides a global overview of some of the ongoing Long Covid studies. It also mentions that possible links between ME/CFS and Long Covid are explored.
Article here Thread here
New Atlas Long COVID and chronic fatigue syndrome share striking similarities
Article about the recent paper "Redox imbalance links COVID-19 and ME/CFS" from Paul, Komaroff et al. with comments from Mady Hornig who "welcomes the long-overdue attention and suggests insights gleaned from novel studies into long COVID could hopefully lead to new treatments for all kinds of post-viral illnesses".
Article here Thread here
The Long Haul: What Every Person Should Know About Long COVID
A recording of an August 25th webinar discussing Long COVID, moderated by Terri Wilder of #MEAction, with panelists Dr. Jennifer Curtin, Chimere Smith, and Wilhelmina Jenkins, is now available.
Video here Thread here
Medical Device Network "Will there ever be a test for chronic fatigue syndrome?"
About attempts of developing a biomarker for ME, and how research into Long Covid might be moving this work forward. Comments from Dr. David Strain and Dr. Charles Shepherd.
Article here Thread here
DW News Recovered, but still not healthy: How long COVID affects people around the world
News segment on Long Covid and ME. Professor Carmen Scheibenbogen presents three hypotheses for ME and Dr. David Strain says 1/3 long Covid patients suffers very badly. Duration 12 minutes.
YouTube video here Thread here
Ireland
An article in the Irish Times discusses the possible links between ME/CFS and long covid. NUI Galway-based economist Dr John Cullinan is quoted saying that the economic cost of ME/CFS in Europe is in the region of €40 billion per annum – a figure that is likely to increase as a result of Covid.
Article here Thread here
ABC News "What is long covid and what are the symptoms?" 8 minute interview with Dr. Richard Schloeffel who says long covid is not dissimilar to postviral syndromes and CFS.
Interview here Thread here
.................
S4ME social media: Facebook, Twitter and You Tube
News, articles and advocacy
UK DecodeME update
The DecodeME team has provided an update with the news that the project start date will be delayed for a few weeks in order to carry out further testing to ensure security and data protection at the study's web portal. Also included is the good news that the project has received the necessary ethics approval; and a picture of the 'spit kit' that will be sent to participants.
Thread with details here
New Zealand
GP Dr Cathy Stephenson presented to the RNZCGP General Practice Conference on 7th August. Title: "From Harm to Help: Promoting an evidence based shift in our understanding of ME/CFS"
The slides with audio of this excellent presentation are now available.
Slides and audio here (30 mins) Thread here
New Zealand Dr Lynette Hodges, an Exercise Physiologist and senior lecturer at Massey University, spoke at a research seminar in Christchurch about her research into the abnormal physiological response to exercise in ME/CFS.
Video here (35 minutes) Thread here
IACFSME 2021 Virtual Conference Conference coverage
"Emerging data point to underlying Autoimmunity in ME/CFS" in Medscape here
Report by dr. Sarah J. Dalziel and dr. Rosamund Vallings here
Thread here
USA Coverage from David Tuller and Medscape of the recently published US ME/CFS Clinician Coalition's guideline.
Trial by Error by David Tuller "While NICE Waffles, US Specialists Publish New Clinical Guidelines for ME/CFS" Article here
Medscape "Trending Clinical Topic: Chronic Fatigue Syndrome" Article here
Thread here
USA - CDC
Slides and a transcript are now available from the CDC ME/CFS Stakeholder Engagement and Communication (SEC) call held on May 13, 2021. The guest speaker, Dr. Dane B. Cook, discussed results from exercise testing in the Multi-Site Clinical Assessment of ME/CFS (MCAM) study. Results showed that when ME/CFS patients and controls were matched for physical fitness, the former were breathing slower but deeper during the exercise test.
Presentation here Slides here Transcript here Thread here
Marathon Mike
Marathon Mike is running a marathon in each of the 27 EU member countries to raise awareness of ME/CFS and funds for biomedical research. This time, he interviewed two ME/CFS patients in Germany: Johanne and Claudia, ahead of his race in the Hamburg Marathon on 12 September.
Article here Thread here
................
UK - NICE ME/CFS Guideline
Guidelines NICE announces roundtable discussion for paused ME/CFS guideline
Short article about the planned roundtable event by NICE "to better understand the issues raised during the guidelines consultation, in accordance with issues raised during the pre-publication period of the final guideline".
Article here Thread here
Science for ME letter to NICE.
On 30th August the S4ME management committee sent an email urging NICE to publish the guideline without further delay and asking a series of questions including the purpose, potential outcomes and practical arrangements of the roundtable meeting. "The announcement first of the pause and then of the roundtable, and the lack of clear explanations of the purpose, agenda and next steps has caused considerable concern to our members who are relying on the new guideline to enable them to access appropriate compassionate care."
Thread with the letter here
Trial by Error by David Tuller A Letter Urging NICE to Publish ME/CFS Guideline Without Delay
In this open letter to chief executive of NICE, Professor Gillian Leng, over 100 scientists, clinicians, academics and other experts call on NICE to publish the ME/CFS Guideline."Making changes at this late stage or cancelling publication altogether would represent a victory of vested professional interests over the rights of patients to receive care consistent with the available research."
Letter here Thread here
Physios for ME response to delayed NICE Guidelines
"The last minute delay to publication of the NICE Guidelines has shocked everyone involved in the process, including Physios for ME. As stakeholders we had already taken part in the lengthy and in-depth consultation process and we find it difficult to understand what more can be discussed given the finalised guidelines were based on a robust analysis of the current evidence base."
Response here Thread here
The Guardian "Withdrawal of planned guidance on ME upsets patients" Science correspondent Natalie Grover outlines the stated reasons for the pause in publication of the guideline, and some of the history. Grover quotes Jonathan Edwards, Michael Sharpe and others, but over emphasises the psychological versus physical, and patients versus scientist arguments.
Article here Thread here
Valerie Eliot Smith Legal opinion and legal advice: the "paused" NICE guidelines for "ME/CFS"
Barrister Valerie Eliot Smith's summary of the legal position surrounding the pause of the NICE guideline.
Article here Thread here
.................
Biomedical research
Journal of Translational Medicine
"Sex-specific plasma lipid profiles of ME/CFS patients and their association with pain, fatigue, and cognitive symptoms" by Nkiliza, Klimas et al
This study used lipidomic analysis on plasma from 50 each of patients and matched controls. Some sex specific differences were found, and some correlations with symptoms. The authors conclude that this 'suggests a possible role of these lipids in promoting immune dysfunction and inflammation which may be among the underlying factors driving the clinical presentation of fatigue, chronic pain, and cognitive difficulties in ill patients'.
Paper here Thread here
Frontiers in Systems Neuroscience
"Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Result in Sustained Improvement in ME/CFS" by Pereira, Bateman et al.
'InTiME sought to show that an acute dose of subcutaneous CT38s in ME/CFS patients, could safely induce sustained symptom improvement..'
A small open label trial with 14 people with ME/CFS using a range of different doses found some short term changes in self reported mean daily symptom score at lower infusion levels, but decreases in measured activity levels leave interpretation of the outcomes unclear. The abstract concludes 'The trial supports the hypothesis that CRFR2 is upregulated in ME/CFS, and that acute CRFR2 agonism may be a viable treatment approach warranting further study'.
The drug company Cortene's press release describes the results as 'preliminary evidence of a cure for ME/CFS'.
Paper here Thread here
Journal of the American College of Cardiology
"Chronic Fatigue Syndrome and Cardiovascular Disease: JACC State-of-the-Art Review" by Natelson et al
The authors summarise research evidence showing cardiovascular findings in CFS, highlighting 'Patients with ME/CFS typically have small hearts, low stroke volume, and low total blood volume, and some have OI.' They conclude that there is a need for more studies, includinging whether deconditioning is a factor.
Article here Thread here
................
Other research
Health Expectations
‘A life I can cope with’. An alternative model of cognitive behavioural therapy (CBT) for CFS/ME” by Clark & Holttum
The authors conducted interviews with 13 adults who had engaged in CBT at a specialist ME/CFS service. The type of CBT aimed at improved management of the illness, rather than increasing activities and challenging unhelpful beliefs.
Article here Thread here
................
Coming events
UK Sussex and Kent ME/CFS Society conference in Brighton on Friday afternoon 29th October. Speakers include Dr Jessica Eccles, Dr Alan Stewart, Dr Charlotte Thompson and NHS Sussex-wide CFS/ME Service clinicians.
Thread here
.................
Covid-19, Long Covid and ME
The Atlantic Long-Haulers are fighting for their future
In this brilliant in-depth article Ed Yong shows how academia has failed patients with ME and related conditions, and is now about to fail Long Covid patients unless the research moves forward with patients as partners.
Article here Thread here
The Scientist Mechanisms of Long COVID Remain Unknown but Data Are Rolling In
This article presents some current hypotheses about Long Covid and provides a global overview of some of the ongoing Long Covid studies. It also mentions that possible links between ME/CFS and Long Covid are explored.
Article here Thread here
New Atlas Long COVID and chronic fatigue syndrome share striking similarities
Article about the recent paper "Redox imbalance links COVID-19 and ME/CFS" from Paul, Komaroff et al. with comments from Mady Hornig who "welcomes the long-overdue attention and suggests insights gleaned from novel studies into long COVID could hopefully lead to new treatments for all kinds of post-viral illnesses".
Article here Thread here
The Long Haul: What Every Person Should Know About Long COVID
A recording of an August 25th webinar discussing Long COVID, moderated by Terri Wilder of #MEAction, with panelists Dr. Jennifer Curtin, Chimere Smith, and Wilhelmina Jenkins, is now available.
Video here Thread here
Medical Device Network "Will there ever be a test for chronic fatigue syndrome?"
About attempts of developing a biomarker for ME, and how research into Long Covid might be moving this work forward. Comments from Dr. David Strain and Dr. Charles Shepherd.
Article here Thread here
DW News Recovered, but still not healthy: How long COVID affects people around the world
News segment on Long Covid and ME. Professor Carmen Scheibenbogen presents three hypotheses for ME and Dr. David Strain says 1/3 long Covid patients suffers very badly. Duration 12 minutes.
YouTube video here Thread here
Ireland
An article in the Irish Times discusses the possible links between ME/CFS and long covid. NUI Galway-based economist Dr John Cullinan is quoted saying that the economic cost of ME/CFS in Europe is in the region of €40 billion per annum – a figure that is likely to increase as a result of Covid.
Article here Thread here
ABC News "What is long covid and what are the symptoms?" 8 minute interview with Dr. Richard Schloeffel who says long covid is not dissimilar to postviral syndromes and CFS.
Interview here Thread here
.................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 6th September 2021
News, articles and advocacy
Science Norway ME/CFS may be linked to failure in energy supply to the cells
The article provides a good explanation of the recent papers from Tronstad, Fluge, Mella et al on metabolic phenotypes and pathomechanisms in ME. Professors Tronstad and Saugstad are interviewed.
Article here Thread here
Video: Understanding Your Patient Rights with a Focus on ME/CFS
A recording of this August 13th webinar, hosted by the Human Health Project, is now available on their YouTube channel.
Video here Thread here
NICE guideline Following NICE's announcement on 17th August that it was pausing publication of the guideline, it annouced a roundtable meeting would be held in mid September. This week it announced the meeting has been moved to October. Some patient organisations, including S4ME have been invited to send a representative to the meeting. NICE has not made public any further details.
Thread discussion here (members only)
..............
Research
Medicina
"Clinical Profile and Aspects of Differential Diagnosis in Patients with ME/CFS from Latvia" by Krumina et al
65 outpatients at a clinic in Riga answered questionnaires with the aim of
distinguishing ME/CFS patients from those with fatigue. Conclusions included: 'Fatigue, myalgia, arthralgia and sleep disturbances tend to be more prevalent in the ME/CFS patients compared to the non-ME/CFS patients' and 'nonsteroidal anti-inflammatory drugs are the most commonly used pharmacological drug class that reduces ME/CFS symptoms'.
Paper here Thread here
Open Forum Infectious Diseases
“Long COVID and post-infective fatigue syndrome – a review” by Sandler et al.
A group of investigators of the international Collaborative on Fatigue Following Infection (COFFI) conducted a systematic review fatigue after infections and made recommendations for clinical and research approaches to assessment of fatigue following COVID-19.
Article here Thread here
................
Coming events
UK - Oxfordshire ME Group for Action (OMEGA) 18th September, 2.30pm.
AGM and talk by Dr Karl Morten on his biomedical research into ME and related conditions. The talk will be via zoom and is free.
Register here Thread here
UK - Action for ME Webinar on 28 September, 3 – 4pm.
Action for ME has held its AGM and published its annual report.
In the webinar Chief Executive, Sonya Chowdhury and Medical Advisor, Dr David Strain will talk about AfME's plans for the future. Questions can be submitted in advance.
Registration here Thread here
...............
Covid-19, Long Covid and ME
inews Attitudes to long Covid are straight out of the ME playbook - history must not be allowed to repeat itself
Excellent opinion piece by health journalist Sarah Graham based on a panel discussion about the psychologisation of illness she participated in last month with, among others, Professor Brian Hughes. "Medical science has a real opportunity here to reject the psychologisation of illnesses it doesn’t understand, and instead focus its energies on figuring them out."
Article here Thread here
Times Radio Catch up with Kait Borsay
Segment about Long Covid and ME with Dr. David Strain, Dr. Asad Khan and Sonya Chowdhury. Starts after 1h 6m.
Programme here Thread here
Other items of interest
news24 Covid-19: Clearer picture of long Covid slowly emerging
Article here Thread here
Medpage Today For Many, 'Long COVID' Becoming Chronic Fatigue
Article here Thread here
...............
S4ME social media: Facebook, Twitter and You Tube
News, articles and advocacy
Science Norway ME/CFS may be linked to failure in energy supply to the cells
The article provides a good explanation of the recent papers from Tronstad, Fluge, Mella et al on metabolic phenotypes and pathomechanisms in ME. Professors Tronstad and Saugstad are interviewed.
Article here Thread here
Video: Understanding Your Patient Rights with a Focus on ME/CFS
A recording of this August 13th webinar, hosted by the Human Health Project, is now available on their YouTube channel.
Video here Thread here
NICE guideline Following NICE's announcement on 17th August that it was pausing publication of the guideline, it annouced a roundtable meeting would be held in mid September. This week it announced the meeting has been moved to October. Some patient organisations, including S4ME have been invited to send a representative to the meeting. NICE has not made public any further details.
Thread discussion here (members only)
..............
Research
Medicina
"Clinical Profile and Aspects of Differential Diagnosis in Patients with ME/CFS from Latvia" by Krumina et al
65 outpatients at a clinic in Riga answered questionnaires with the aim of
distinguishing ME/CFS patients from those with fatigue. Conclusions included: 'Fatigue, myalgia, arthralgia and sleep disturbances tend to be more prevalent in the ME/CFS patients compared to the non-ME/CFS patients' and 'nonsteroidal anti-inflammatory drugs are the most commonly used pharmacological drug class that reduces ME/CFS symptoms'.
Paper here Thread here
Open Forum Infectious Diseases
“Long COVID and post-infective fatigue syndrome – a review” by Sandler et al.
A group of investigators of the international Collaborative on Fatigue Following Infection (COFFI) conducted a systematic review fatigue after infections and made recommendations for clinical and research approaches to assessment of fatigue following COVID-19.
Article here Thread here
................
Coming events
UK - Oxfordshire ME Group for Action (OMEGA) 18th September, 2.30pm.
AGM and talk by Dr Karl Morten on his biomedical research into ME and related conditions. The talk will be via zoom and is free.
Register here Thread here
UK - Action for ME Webinar on 28 September, 3 – 4pm.
Action for ME has held its AGM and published its annual report.
In the webinar Chief Executive, Sonya Chowdhury and Medical Advisor, Dr David Strain will talk about AfME's plans for the future. Questions can be submitted in advance.
Registration here Thread here
...............
Covid-19, Long Covid and ME
inews Attitudes to long Covid are straight out of the ME playbook - history must not be allowed to repeat itself
Excellent opinion piece by health journalist Sarah Graham based on a panel discussion about the psychologisation of illness she participated in last month with, among others, Professor Brian Hughes. "Medical science has a real opportunity here to reject the psychologisation of illnesses it doesn’t understand, and instead focus its energies on figuring them out."
Article here Thread here
Times Radio Catch up with Kait Borsay
Segment about Long Covid and ME with Dr. David Strain, Dr. Asad Khan and Sonya Chowdhury. Starts after 1h 6m.
Programme here Thread here
Other items of interest
news24 Covid-19: Clearer picture of long Covid slowly emerging
Article here Thread here
Medpage Today For Many, 'Long COVID' Becoming Chronic Fatigue
Article here Thread here
...............
S4ME social media: Facebook, Twitter and You Tube
Last edited:
Week beginning 13th September 2021
News, articles and advocacy
UK - NICE ME/CFS guideline
There has been no further public announcement from NICE about the planned roundtable meeting in October, following the pause to publication of the guideline in August. Discussion of rumours and possible ramifications continues in the members only area of the forum. The S4ME committee has reported to members on its correspondence with NICE.
Threads here and here (members only)
Trial By Error by David Tuller
"An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline". The letter has been sent again, now signed by 150+ experts and 100+ organizations and groups from UK and around the world, including Science for ME.
Letter here Thread here (members only)
Denmark Excellent opinion piece from Madelleine Müller in the newspaper Information. She explains the serious consequences it has for ME patients that the disease is viewed as a functional disorder in Denmark and also tells of a general lack of knowledge about ME.
Article here (Danish) Thread here
Sweden Worrying news about a private digital rehabilitation company starting up a 4 week programme for ME/CFS patients in collaboration with a ME clinic in the region Västerbotten. The Swedish patient organisation RME has provided a comment on social media that the company seems to lack specialist expertise about ME and appear to apply rehabilitation models from other diseases. RME does not endorse the rehabilitation programme.
Thread with more information and links here
Mike's EU Marathons
Marathon Mike successfully finished the marathon of Hamburg on 12 September. Before the race, he interviewed Johanne and Claudia, two patients with ME/CFS about the current situation in Germany.
Article here Thread here
..................
Research
Biomolecules
"Evaluation of Immune Dysregulation in an Austrian Patient Cohort Suffering from ME/CFS" by Lutz et al
In a retrospective data analysis of routine blood tests in 262 ME/CFS patients, '64.9% had a reduction or deficiency in at least one of the listed immune parameters. In contrast, 26.3% showed signs of immune activation or inflammation.' The authors conclude, 'results confirmed the relevance of immune dysfunction in ME/CFS'. They suggest this may lead to biomarkers and treatment.
Paper here Thread here
Journal of Clinical Medicine
"Complement Component C1q as a Potential Diagnostic Tool for ME/CFS Subtyping" by Castro-Marrero et al.
In this Spanish study of 250 carefully phenotyped female ME/CFS cases, 'The results show three symptom-based clusters, classified as severe, moderate, and mild, presenting significant differences (p < 0.05) in five blood parameters. Unexpectedly the study also revealed high levels of circulating complement factor C1q in 107/250 (43%) of the participants, placing C1q as a key molecule to identify an ME/CFS subtype/subgroup with more apparent pain symptoms'. The authors suggest these results have important implications for diagnosis and treatment.
Paper here Thread here
Journal of the American College of Cardiology
"Compression Garment Reduces Orthostatic Tachycardia and Symptoms in Patients With Postural Orthostatic Tachycardia Syndrome" by Kate Bourne et al (research not specific to ME/CFS).
30 POTS patients did a 10 minute tilt table test with 4 different levels of compression ranging from none to full abdominal and leg compression. 'Abdominal and lower body compression reduced heart rate and improved symptoms during HUT in adult patients with POTS. These effects were driven by improved stroke volume with compression'.
Paper here Thread here
BJOG Journal of Obstetrics and Gynaecology
"Impact of a mid-urethral synthetic mesh sling on long-term risk of systemic conditions in women with stress urinary incontinence" by Mueller et al.
This population study in NHS England patients over 10 years did not find any increase in incidence of ME/CFS, fibromaylgia or autoimmune conditions in 88 947 women who had mesh surgery when compared with 3389 women who had non-mesh surgery.
Paper here Thread here
BMC Family Practice
“The general practitioners perspective regarding registration of persistent somatic symptoms in primary care: a survey” by Kitselaar et al.
The authors conducted a survey among 259 GP’s in the Netherlands on registration of Persistent somatic symptoms (PSS) in primary care. PSS-related syndrome codes were reportedly used by 91.5% of GPs, but this was primarily the case for the code for irritable bowel syndrome.
Article here Thread here
IACFS/ME Virtual Conference
“Misrepresentation of ME/CFS in Media Images: A Picture Tells a 1,000 Words. What Story Are We Telling?” by McMillan et al.
In this conference poster, The authors reported a systematic search of images in articles on research into Chronic Fatigue Syndrome. Of 298 articles found, only 17 contained a realistic depiction of a person with ME/CFS.
Abstract here Thread here
.................
Coming events
Webinars The next in the weekly series of 5 webinars organised by the Northern Ireland group, Hope 4 ME & Fibro, is on 22 September.
"Post-exertional Symptom Exacerbation – Activity and Rest/ Physiotherapy Advice" with Physios for M.E.
Thread with details here
.................
Covid-19, Long Covid and ME
fitNorthEast Fatigue and post-exertional symptom exacerbation in Covid
Useful article by physiotherapy student Shahistha Haque on Long Covid and rehabilitation. She informs about pacing as activity management and the importance of avoiding triggering post-exertional symptom exacerbation (PESE).
Article here Thread here
Video: "COVID Long Haulers and the Connection to ME/CFS" by Dr. Bateman
A recording from August 2021 of Dr. Lucinda Bateman speaking about "post-acute sequelae of COVID-19 (PASC), Long Haul COVID, ME/CFS, and orthostatic intolerance/dysautonomia" is now available.
Video here Thread here
.................
S4ME social media: Facebook, Twitter and You Tube
News, articles and advocacy
UK - NICE ME/CFS guideline
There has been no further public announcement from NICE about the planned roundtable meeting in October, following the pause to publication of the guideline in August. Discussion of rumours and possible ramifications continues in the members only area of the forum. The S4ME committee has reported to members on its correspondence with NICE.
Threads here and here (members only)
Trial By Error by David Tuller
"An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline". The letter has been sent again, now signed by 150+ experts and 100+ organizations and groups from UK and around the world, including Science for ME.
Letter here Thread here (members only)
Denmark Excellent opinion piece from Madelleine Müller in the newspaper Information. She explains the serious consequences it has for ME patients that the disease is viewed as a functional disorder in Denmark and also tells of a general lack of knowledge about ME.
Article here (Danish) Thread here
Sweden Worrying news about a private digital rehabilitation company starting up a 4 week programme for ME/CFS patients in collaboration with a ME clinic in the region Västerbotten. The Swedish patient organisation RME has provided a comment on social media that the company seems to lack specialist expertise about ME and appear to apply rehabilitation models from other diseases. RME does not endorse the rehabilitation programme.
Thread with more information and links here
Mike's EU Marathons
Marathon Mike successfully finished the marathon of Hamburg on 12 September. Before the race, he interviewed Johanne and Claudia, two patients with ME/CFS about the current situation in Germany.
Article here Thread here
..................
Research
Biomolecules
"Evaluation of Immune Dysregulation in an Austrian Patient Cohort Suffering from ME/CFS" by Lutz et al
In a retrospective data analysis of routine blood tests in 262 ME/CFS patients, '64.9% had a reduction or deficiency in at least one of the listed immune parameters. In contrast, 26.3% showed signs of immune activation or inflammation.' The authors conclude, 'results confirmed the relevance of immune dysfunction in ME/CFS'. They suggest this may lead to biomarkers and treatment.
Paper here Thread here
Journal of Clinical Medicine
"Complement Component C1q as a Potential Diagnostic Tool for ME/CFS Subtyping" by Castro-Marrero et al.
In this Spanish study of 250 carefully phenotyped female ME/CFS cases, 'The results show three symptom-based clusters, classified as severe, moderate, and mild, presenting significant differences (p < 0.05) in five blood parameters. Unexpectedly the study also revealed high levels of circulating complement factor C1q in 107/250 (43%) of the participants, placing C1q as a key molecule to identify an ME/CFS subtype/subgroup with more apparent pain symptoms'. The authors suggest these results have important implications for diagnosis and treatment.
Paper here Thread here
Journal of the American College of Cardiology
"Compression Garment Reduces Orthostatic Tachycardia and Symptoms in Patients With Postural Orthostatic Tachycardia Syndrome" by Kate Bourne et al (research not specific to ME/CFS).
30 POTS patients did a 10 minute tilt table test with 4 different levels of compression ranging from none to full abdominal and leg compression. 'Abdominal and lower body compression reduced heart rate and improved symptoms during HUT in adult patients with POTS. These effects were driven by improved stroke volume with compression'.
Paper here Thread here
BJOG Journal of Obstetrics and Gynaecology
"Impact of a mid-urethral synthetic mesh sling on long-term risk of systemic conditions in women with stress urinary incontinence" by Mueller et al.
This population study in NHS England patients over 10 years did not find any increase in incidence of ME/CFS, fibromaylgia or autoimmune conditions in 88 947 women who had mesh surgery when compared with 3389 women who had non-mesh surgery.
Paper here Thread here
BMC Family Practice
“The general practitioners perspective regarding registration of persistent somatic symptoms in primary care: a survey” by Kitselaar et al.
The authors conducted a survey among 259 GP’s in the Netherlands on registration of Persistent somatic symptoms (PSS) in primary care. PSS-related syndrome codes were reportedly used by 91.5% of GPs, but this was primarily the case for the code for irritable bowel syndrome.
Article here Thread here
IACFS/ME Virtual Conference
“Misrepresentation of ME/CFS in Media Images: A Picture Tells a 1,000 Words. What Story Are We Telling?” by McMillan et al.
In this conference poster, The authors reported a systematic search of images in articles on research into Chronic Fatigue Syndrome. Of 298 articles found, only 17 contained a realistic depiction of a person with ME/CFS.
Abstract here Thread here
.................
Coming events
Webinars The next in the weekly series of 5 webinars organised by the Northern Ireland group, Hope 4 ME & Fibro, is on 22 September.
"Post-exertional Symptom Exacerbation – Activity and Rest/ Physiotherapy Advice" with Physios for M.E.
Thread with details here
.................
Covid-19, Long Covid and ME
fitNorthEast Fatigue and post-exertional symptom exacerbation in Covid
Useful article by physiotherapy student Shahistha Haque on Long Covid and rehabilitation. She informs about pacing as activity management and the importance of avoiding triggering post-exertional symptom exacerbation (PESE).
Article here Thread here
Video: "COVID Long Haulers and the Connection to ME/CFS" by Dr. Bateman
A recording from August 2021 of Dr. Lucinda Bateman speaking about "post-acute sequelae of COVID-19 (PASC), Long Haul COVID, ME/CFS, and orthostatic intolerance/dysautonomia" is now available.
Video here Thread here
.................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 20th September 2021
News, articles and advocacy
USA Dr Ron Davis at Stanford University led a meeting of scientists researching ME/CFS recently. It was a virtual meeting attended by about 100 scientists. The agenda and list of those who attended have been made public.
Thread here
Hungary
S4ME forum member Wyva launched the first Hungarian ME/CFS website. Includes a section with information for doctors listing the most important literature.
Website here Thread here
Mike's EU Marathons - Croatia
Mike Harley ran the marathon of Zagreb to raise awareness of ME/CFS and funds for more biomedical research into the illness. He also conducted an interview with two patients, Ivan and J about what life is like for them living with ME/CFS in Croatia.
Article here Thread here
................
NICE ME/CFS guideline
NICE "Update on the NICE ME/CFS guideline roundtable discussion"
On 21st September NICE posted a short update. The roundtable meeting will be held on 18th October in London, chaired by Professor Dame Carol Black. Quote: Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said: “We acknowledge that patients will be concerned about these further developments in what has been a long and difficult guideline process. We hope that by holding a roundtable discussion we can understand the issues raised by the professional bodies to inform NICE’s thinking on the next steps for publication of the guideline.”
Announcement here Thread here
The Medical Independent "Evidence-based medicine is not about consensus" by George Winter
This short article on an Irish medical website questions NICE's action in pausing the ME/CFS guideline, and concludes: 'Well, the moment has arrived and the right action is to publish the new guidelines. If resignees and certain Royal colleges are not prepared to endorse “rigorous methodology and process” they must be ignored. What must not be ignored are those who continue to suffer daily from ME/CFS.'
Article here Thread here
....................
Research survey
University of Leicester Physiotherapy Department
"An international survey of experiences and attitudes towards Pacing using a heart rate monitor for people with ME/CFS" Chief Investigator – Dr Nicola Clague-Baker.
'People with ME often use heart rate monitors to pace their activities but there has been very little research exploring the use and peoples experiences of this approach. The aim of this study is to explore the experiences of and attitudes towards pacing with a heart rate monitor in people with ME.'
The researchers request completion by 15th October.
Physios for ME article here Information sheet with link to survey here Thread here
.....................
Research
Clinical Neurophysiology Practice
"Cerebral blood flow remains reduced after tilt testing in ME/CFS patients" by Van Campen, Rowe, Visser
60 patients were studied, with a range of severity, and with and without POTS. Results highlighted include:
'Cerebral blood flow in ME/CFS patients remains abnormal 5 minutes post-tilt test.
Post cerebral blood flow abnormalities do not depend on hemodynamic results and on end-tidal carbon dioxide pressures during the tilt-test.
Post cerebral blood flow abnormalities are most severe in more severely diseased ME/CFS patients.'
Paper here Thread here
IACFSME virtual conference August 2021
Some abstracts and poster presentations from this conference have been shared online. These include:
"ME/CFS Dependence on Social Institutions: Violence, Abuse, Neglect and Exploitation" by Geoffrey Hallmann
Abstract here Thread here
"Two Symptoms Accurately Identify Post-exertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue" by Davenport et al
Abstract here Thread here
"Ventilatory Functioning During Serial Cardiopulmonary Exercise Testing in People With and Without ME/CFS" by Davenport et al
Abstract here Thread here
"In a pilot study, three classes of electroencephalogram (EEG) brain waveforms significantly predicted IOM criteria ME/CFS diagnosis" by Dowell et al.
Poster here Thread here
________
Chronic Illness
“Patient perceptions of infectious illnesses preceding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” by Jason et al.
Researchers from the University of Chicago conducted a large study of 1773 ME/CFS patients from multiple sites in several countries. 60% of patients reported a variety of infectious illnesses before the onset of ME/CFS. The most frequently reported infectious illness was Mononucleosis although over 100 other infectious illnesses were mentioned.
Article here Thread here
BMJ Opinion
“To speed progress in treating chronic conditions, engage patients and caregivers as research partners” by Jeffrey Lubell
In this blog article, the parent of a 17-year old daughter with Ehler’s Danlos Syndrome argues that patients and carers should be engaged as partners in scientific research. He writes: “I would encourage researchers to see patients not just as data collectors, but as partners for generating hypotheses for future evaluation.”
Article here Thread here
The Journal of Pediatrics
“The Presentation of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Influenced by the Presence or Absence of Joint Hypermobility” by Vogel et al.
The research team of Peter Rowe from John Hopkins University compared ME/CFS patients with and without joint hypermobility. In contrast to the researchers' hypotheses, they found few differences between the two groups.
Article here Thread here
Journal of Health Psychology
“The ‘medically unexplained symptoms’ syndrome concept and the cognitive-behavioral treatment model” by Scott et al.
In this commentary, the authors, which include Keith Geraghty, Joan Crawford, and David Marks, criticize the cognitive-behavioral treatment model for medically unexplained symptoms (MUS).
Article here Thread here
Medicina
“Turning a Corner in ME/CFS Research” by Pheby et al.
In this editorial, the authors highlight papers of the special issue on ME/CFS in the journal Medicina. They also comment on recent events in the UK, writing: “If NICE accepts the position of those lobbying for changes to the new guideline on ME/CFS, it will be putting itself at variance with expert opinion in much of the rest of the world.”
Article here Thread here
.....................
Coming events
NIH ME/CFS Advocacy Call
The Trans-NIH ME/CFS Working Group will host a webinar on October 22, 2021 at 3:00 pm Eastern Time, noon Pacific Time. The guest speaker will be Rakib Rayhan, M.D., Ph.D., Department of Neurology, Medstar Georgetown University Hospital. Pre-registration is not required.
Details here Thread here
.....................
Covid-19, Long Covid and ME
Trial by Error by David Tuller Good Long Covid Coverage from Atlantic; Skeptical Coverage from New Yorker and Others
David Tuller's long and hard work is surfacing as background information in articles about Long Covid. For instance in Ed Yong's recent article "Long-haulers are fighting for their future" in the Atlantic where the PACE trial is described as a "now-discredited study". But there are also examples of articles dismissive of both Tuller's work and of Long Covid.
Article here Thread here
Utah's CW30 IN FOCUS Discussion: September's COVID-19 Update
12 year old Arabella is suffering from Long Covid and tells how it has impacted her life. Also a short interview with Dr. Brayden Yellman from Bateman Horne Center on similarities to ME/CFS. He advises Long Covid patients to not push themselves and to find knowledgable doctors.
News segment here Thread here
.....................
S4ME social media: Facebook, Twitter and You Tube
News, articles and advocacy
USA Dr Ron Davis at Stanford University led a meeting of scientists researching ME/CFS recently. It was a virtual meeting attended by about 100 scientists. The agenda and list of those who attended have been made public.
Thread here
Hungary
S4ME forum member Wyva launched the first Hungarian ME/CFS website. Includes a section with information for doctors listing the most important literature.
Website here Thread here
Mike's EU Marathons - Croatia
Mike Harley ran the marathon of Zagreb to raise awareness of ME/CFS and funds for more biomedical research into the illness. He also conducted an interview with two patients, Ivan and J about what life is like for them living with ME/CFS in Croatia.
Article here Thread here
................
NICE ME/CFS guideline
NICE "Update on the NICE ME/CFS guideline roundtable discussion"
On 21st September NICE posted a short update. The roundtable meeting will be held on 18th October in London, chaired by Professor Dame Carol Black. Quote: Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said: “We acknowledge that patients will be concerned about these further developments in what has been a long and difficult guideline process. We hope that by holding a roundtable discussion we can understand the issues raised by the professional bodies to inform NICE’s thinking on the next steps for publication of the guideline.”
Announcement here Thread here
The Medical Independent "Evidence-based medicine is not about consensus" by George Winter
This short article on an Irish medical website questions NICE's action in pausing the ME/CFS guideline, and concludes: 'Well, the moment has arrived and the right action is to publish the new guidelines. If resignees and certain Royal colleges are not prepared to endorse “rigorous methodology and process” they must be ignored. What must not be ignored are those who continue to suffer daily from ME/CFS.'
Article here Thread here
....................
Research survey
University of Leicester Physiotherapy Department
"An international survey of experiences and attitudes towards Pacing using a heart rate monitor for people with ME/CFS" Chief Investigator – Dr Nicola Clague-Baker.
'People with ME often use heart rate monitors to pace their activities but there has been very little research exploring the use and peoples experiences of this approach. The aim of this study is to explore the experiences of and attitudes towards pacing with a heart rate monitor in people with ME.'
The researchers request completion by 15th October.
Physios for ME article here Information sheet with link to survey here Thread here
.....................
Research
Clinical Neurophysiology Practice
"Cerebral blood flow remains reduced after tilt testing in ME/CFS patients" by Van Campen, Rowe, Visser
60 patients were studied, with a range of severity, and with and without POTS. Results highlighted include:
'Cerebral blood flow in ME/CFS patients remains abnormal 5 minutes post-tilt test.
Post cerebral blood flow abnormalities do not depend on hemodynamic results and on end-tidal carbon dioxide pressures during the tilt-test.
Post cerebral blood flow abnormalities are most severe in more severely diseased ME/CFS patients.'
Paper here Thread here
IACFSME virtual conference August 2021
Some abstracts and poster presentations from this conference have been shared online. These include:
"ME/CFS Dependence on Social Institutions: Violence, Abuse, Neglect and Exploitation" by Geoffrey Hallmann
Abstract here Thread here
"Two Symptoms Accurately Identify Post-exertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue" by Davenport et al
Abstract here Thread here
"Ventilatory Functioning During Serial Cardiopulmonary Exercise Testing in People With and Without ME/CFS" by Davenport et al
Abstract here Thread here
"In a pilot study, three classes of electroencephalogram (EEG) brain waveforms significantly predicted IOM criteria ME/CFS diagnosis" by Dowell et al.
Poster here Thread here
________
Chronic Illness
“Patient perceptions of infectious illnesses preceding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” by Jason et al.
Researchers from the University of Chicago conducted a large study of 1773 ME/CFS patients from multiple sites in several countries. 60% of patients reported a variety of infectious illnesses before the onset of ME/CFS. The most frequently reported infectious illness was Mononucleosis although over 100 other infectious illnesses were mentioned.
Article here Thread here
BMJ Opinion
“To speed progress in treating chronic conditions, engage patients and caregivers as research partners” by Jeffrey Lubell
In this blog article, the parent of a 17-year old daughter with Ehler’s Danlos Syndrome argues that patients and carers should be engaged as partners in scientific research. He writes: “I would encourage researchers to see patients not just as data collectors, but as partners for generating hypotheses for future evaluation.”
Article here Thread here
The Journal of Pediatrics
“The Presentation of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Influenced by the Presence or Absence of Joint Hypermobility” by Vogel et al.
The research team of Peter Rowe from John Hopkins University compared ME/CFS patients with and without joint hypermobility. In contrast to the researchers' hypotheses, they found few differences between the two groups.
Article here Thread here
Journal of Health Psychology
“The ‘medically unexplained symptoms’ syndrome concept and the cognitive-behavioral treatment model” by Scott et al.
In this commentary, the authors, which include Keith Geraghty, Joan Crawford, and David Marks, criticize the cognitive-behavioral treatment model for medically unexplained symptoms (MUS).
Article here Thread here
Medicina
“Turning a Corner in ME/CFS Research” by Pheby et al.
In this editorial, the authors highlight papers of the special issue on ME/CFS in the journal Medicina. They also comment on recent events in the UK, writing: “If NICE accepts the position of those lobbying for changes to the new guideline on ME/CFS, it will be putting itself at variance with expert opinion in much of the rest of the world.”
Article here Thread here
.....................
Coming events
NIH ME/CFS Advocacy Call
The Trans-NIH ME/CFS Working Group will host a webinar on October 22, 2021 at 3:00 pm Eastern Time, noon Pacific Time. The guest speaker will be Rakib Rayhan, M.D., Ph.D., Department of Neurology, Medstar Georgetown University Hospital. Pre-registration is not required.
Details here Thread here
.....................
Covid-19, Long Covid and ME
Trial by Error by David Tuller Good Long Covid Coverage from Atlantic; Skeptical Coverage from New Yorker and Others
David Tuller's long and hard work is surfacing as background information in articles about Long Covid. For instance in Ed Yong's recent article "Long-haulers are fighting for their future" in the Atlantic where the PACE trial is described as a "now-discredited study". But there are also examples of articles dismissive of both Tuller's work and of Long Covid.
Article here Thread here
Utah's CW30 IN FOCUS Discussion: September's COVID-19 Update
12 year old Arabella is suffering from Long Covid and tells how it has impacted her life. Also a short interview with Dr. Brayden Yellman from Bateman Horne Center on similarities to ME/CFS. He advises Long Covid patients to not push themselves and to find knowledgable doctors.
News segment here Thread here
.....................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 27th September 2021
News, articles and advocacy
Crowdfunding Trial By Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Fall 2021
A crowdfund to support David Tuller's position and crucial work as Senior Fellow in Public Health and Journalism, UC Berkeley, from January through June of 2022. The crowdfunding aims to raise $64,000 USD and ends October 31st.
Crowdfunding here Thread here
South Africa Informative radio interview about ME with Retha Viviers, ME CFS Foundation South Africa founder and director. Program: Weekend Breakfast with Refiloe Mpakanyane. Duration: 15 minutes.
Interview here Thread here
Sweden Member of Parliament Maria Stockhaus has submitted a motion to the Parliament on improving diagnostics and treatment of ME and including information about ME in medical education.
Motion here Thread here
................
UK - NICE ME/CFS guideline
Commentary on the pause and rountable meeting continues in the media and on social media, and discussion on the forum. Some are listed below:
Dr Karl Morton (Oxford University ME researcher) statement here Thread here
Invest in ME research correspondence with NICE here Thread here
Norwegian ME Association letter to NICE (in English) here Thread here
Daily Telegraph article (paywalled) “How I became a target for the ME militants” by Dr Michael Fitzpatrick (not a recommendation) here Thread here
Legal action Solicitor Peter Todd has posted on Twitter:
'I have today sent@NICEComms a letter before claim under the judicial review pre-action protocol regarding its decision of 17th August 2021 to pause publication of its updated guidelines on the diagnosis and management of ME/CFS.
The letter before claims seeks agreement by NICE to revert to follow its procedures as set out in its manual no later than noon on Wednesday 6th October 2021, in default of which we intend to issue proceedings asking the High Court to intervene. Any roundtable must be held after publication of the guidelines.'
Tweet here Thread here
....................
Biomedical research
Research Square preprint (not yet peer reviewed)
"Molecular evidence of autophagy impairment as serum level of ATG13 is elevated in patients with ME and CFS" by Roy et al
Dr Peterson and researchers from Simmaron Research study of two patients and 2 controls, and checked the findings with further small numbers of patients and controls.
Paper here Thread here
Medicina
"ME/CFS: A Neurological Entity?" by Gandasegui et al
A narrative review of ME/CFS neurological and dysautonomia studies.
Article here Thread here
Medicina
“A Comprehensive Examination of Severely Ill ME/CFS Patients” by Chang et al.
This paper reports the main results of the Severely Ill Patient Study (SIPS) funded by the Open Medicine Foundation. While lower morning cortisol levels were observed in the patients compared to controls, antibody and antigen measurements showed no evidence for acute infections by common viral or bacterial pathogens.
Article here Thread here
Solve M.E.
Solve M.E. has announced their 2021 list of Ramsay Researchers, a program "designed to build a workforce, with a special focus on early-career investigators, and to allow researchers to generate data to support larger grant applications."
Details here Thread here
NIH Webinar - Beyond the Symptom: The Biology of Fatigue
Recordings of both days of this webinar are now available on the NIH website.
Day 1 here Day 2 here Thread here
....................
Other research
Brain Behavior and Immunity
“Understanding Long Covid: Nosology, social attitudes and stigma” by Byrne
The author points out a resistance to accept parallels between Long Covid and comparable post-viral syndromes ME/CFS because the latter has historically been subject to stigma. She argues that this “resistance risks endorsing the stigma associated with such existing conditions.”
Article here Thread here
International Journal of Educational Technology in Higher Education "Loneliness in online students with disabilities qualitative investigation for experience, understanding and solution" by Kotera et al
Nine participants, two of them with CFS. The researchers found that self-paced online learning was regarded positively and eliminated stigma, but also that a sense of loneliness was reported.
Article here Thread here
....................
Coming events
Sweden Free digital conference 13th October from 13.00-17.00 on zoom. The conference is aimed at health care personnel, researchers and decision makers within health care. One of the lectures will be in English by professor Anthony Komaroff who'll provide an overview of international ME/CFS research.
More information and sign-up here Thread here
.....................
Covid-19, Long Covid and ME
Northwest Suburban College Covid-19: Where are we now? Talking about the pandemic from all perspectives by the Experts!
Webinar with Prof. Leonard Jason as one of the lecturers. Title of his talk is "COVID-19 Symptoms Among Long-Haulers and those with ME/CFS". Begins at 2 hours 7 minutes.
Webinar here Thread here
Sweden Radio programme about ME and Long Covid. Includes Professor Jonas Bergquist who says comparative studies of both diseases are underway and that this is a unique opportunity to follow patients after a viral infection. Kerstin Helling, president of the Swedish ME patient organisation, RME, says research into long Covid can draw on knowledge from research into ME. Duration 20 min.
Radio programme here (Swedish) Thread here
The Conversation Social media, activism, trucker caps: the fascinating story behind long COVID
Professor Deborah Lupton on how patients have mobilised to increase awareness about Long Covid and that this "is the latest of a history of patient-led support, information sharing, activism, fund raising and involvement in research". She gives HIV/AIDS and CFS as other examples of patient-led research and activism.
Article here Thread here
Independent.ie Doctors urged to look out for chronic fatigue syndrome in long Covid patients
Associate Professor in Physiotherapy Nicola Clague-Baker recently held a lecture in Dublin's Trinity College on Long Covid and ME. In this article she provides good information about ME, PEM and Long Covid. "There seems to be a link between long Covid and ME with potential there for long COVID patients to develop ME".
Article here Thread here
Action for M.E. Webinar - Long Covid and Myalgic Encephalomyelitis
"Join us to hear from our Chief Executive, Sonya Chowdhury and our Medical Advisor, Dr David Strain about our exciting plans for the future." Duration: 58 minutes.
YouTube video here Thread here
VeryWell Health What long COVID Awareness Means for People with Chronic Illnesses
Great article about similarities between Long Covid and other conditions as ME and that previously neglected illnesses now may receive more awareness together with Long Covid. Comments from among others Dr. Nina Muirhead who says “Whilst it feels frustrating...I think that the wave of interest in long COVID will pull up all the little boats of chronic conditions" and that long Covid will make "patient experts more culturally acceptable".
Article here Thread here
The Atlantic Festival Science journalist Ed Yong provides a short summary of his reporting of Long Covid and ME and how research efforts must change in order to meet the needs of patients. "Long Haulers, people with ME/CFS, and others with chronic illnesses, don't have time for science to do its incremental stumble, for dogma about disease to gradually shift, for academia's gate-keeping mechanisms to slowly buckle. They need a transformative, patient-centred approach to research. They need science that acts in service of solving urgent problems, instead of padding the publication records of researchers." Duration: 4 minutes.
YouTube film here Thread here
Other items of interest
Royal College of Nursing From chronic fatigue to long COVID
Article here Thread here
BreakingNews.ie 'We need to get the word out there' - Irish long Covid patients share their stories
Article here Thread here
Digital Journal Long COVID and the connection with chronic fatigue syndrome
Article here Thread here
Time Can Breakthrough Infections Lead to Long COVID? For an Unlucky Few, Yes
Article here Thread here
The Atlantic What Even Counts as Science Writing Anymore? - Ed Yong
Article here Thread here
.....................
S4ME social media: Facebook, Twitter and You Tube
News, articles and advocacy
Crowdfunding Trial By Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Fall 2021
A crowdfund to support David Tuller's position and crucial work as Senior Fellow in Public Health and Journalism, UC Berkeley, from January through June of 2022. The crowdfunding aims to raise $64,000 USD and ends October 31st.
Crowdfunding here Thread here
South Africa Informative radio interview about ME with Retha Viviers, ME CFS Foundation South Africa founder and director. Program: Weekend Breakfast with Refiloe Mpakanyane. Duration: 15 minutes.
Interview here Thread here
Sweden Member of Parliament Maria Stockhaus has submitted a motion to the Parliament on improving diagnostics and treatment of ME and including information about ME in medical education.
Motion here Thread here
................
UK - NICE ME/CFS guideline
Commentary on the pause and rountable meeting continues in the media and on social media, and discussion on the forum. Some are listed below:
Dr Karl Morton (Oxford University ME researcher) statement here Thread here
Invest in ME research correspondence with NICE here Thread here
Norwegian ME Association letter to NICE (in English) here Thread here
Daily Telegraph article (paywalled) “How I became a target for the ME militants” by Dr Michael Fitzpatrick (not a recommendation) here Thread here
Legal action Solicitor Peter Todd has posted on Twitter:
'I have today sent@NICEComms a letter before claim under the judicial review pre-action protocol regarding its decision of 17th August 2021 to pause publication of its updated guidelines on the diagnosis and management of ME/CFS.
The letter before claims seeks agreement by NICE to revert to follow its procedures as set out in its manual no later than noon on Wednesday 6th October 2021, in default of which we intend to issue proceedings asking the High Court to intervene. Any roundtable must be held after publication of the guidelines.'
Tweet here Thread here
....................
Biomedical research
Research Square preprint (not yet peer reviewed)
"Molecular evidence of autophagy impairment as serum level of ATG13 is elevated in patients with ME and CFS" by Roy et al
Dr Peterson and researchers from Simmaron Research study of two patients and 2 controls, and checked the findings with further small numbers of patients and controls.
Paper here Thread here
Medicina
"ME/CFS: A Neurological Entity?" by Gandasegui et al
A narrative review of ME/CFS neurological and dysautonomia studies.
Article here Thread here
Medicina
“A Comprehensive Examination of Severely Ill ME/CFS Patients” by Chang et al.
This paper reports the main results of the Severely Ill Patient Study (SIPS) funded by the Open Medicine Foundation. While lower morning cortisol levels were observed in the patients compared to controls, antibody and antigen measurements showed no evidence for acute infections by common viral or bacterial pathogens.
Article here Thread here
Solve M.E.
Solve M.E. has announced their 2021 list of Ramsay Researchers, a program "designed to build a workforce, with a special focus on early-career investigators, and to allow researchers to generate data to support larger grant applications."
Details here Thread here
NIH Webinar - Beyond the Symptom: The Biology of Fatigue
Recordings of both days of this webinar are now available on the NIH website.
Day 1 here Day 2 here Thread here
....................
Other research
Brain Behavior and Immunity
“Understanding Long Covid: Nosology, social attitudes and stigma” by Byrne
The author points out a resistance to accept parallels between Long Covid and comparable post-viral syndromes ME/CFS because the latter has historically been subject to stigma. She argues that this “resistance risks endorsing the stigma associated with such existing conditions.”
Article here Thread here
International Journal of Educational Technology in Higher Education "Loneliness in online students with disabilities qualitative investigation for experience, understanding and solution" by Kotera et al
Nine participants, two of them with CFS. The researchers found that self-paced online learning was regarded positively and eliminated stigma, but also that a sense of loneliness was reported.
Article here Thread here
....................
Coming events
Sweden Free digital conference 13th October from 13.00-17.00 on zoom. The conference is aimed at health care personnel, researchers and decision makers within health care. One of the lectures will be in English by professor Anthony Komaroff who'll provide an overview of international ME/CFS research.
More information and sign-up here Thread here
.....................
Covid-19, Long Covid and ME
Northwest Suburban College Covid-19: Where are we now? Talking about the pandemic from all perspectives by the Experts!
Webinar with Prof. Leonard Jason as one of the lecturers. Title of his talk is "COVID-19 Symptoms Among Long-Haulers and those with ME/CFS". Begins at 2 hours 7 minutes.
Webinar here Thread here
Sweden Radio programme about ME and Long Covid. Includes Professor Jonas Bergquist who says comparative studies of both diseases are underway and that this is a unique opportunity to follow patients after a viral infection. Kerstin Helling, president of the Swedish ME patient organisation, RME, says research into long Covid can draw on knowledge from research into ME. Duration 20 min.
Radio programme here (Swedish) Thread here
The Conversation Social media, activism, trucker caps: the fascinating story behind long COVID
Professor Deborah Lupton on how patients have mobilised to increase awareness about Long Covid and that this "is the latest of a history of patient-led support, information sharing, activism, fund raising and involvement in research". She gives HIV/AIDS and CFS as other examples of patient-led research and activism.
Article here Thread here
Independent.ie Doctors urged to look out for chronic fatigue syndrome in long Covid patients
Associate Professor in Physiotherapy Nicola Clague-Baker recently held a lecture in Dublin's Trinity College on Long Covid and ME. In this article she provides good information about ME, PEM and Long Covid. "There seems to be a link between long Covid and ME with potential there for long COVID patients to develop ME".
Article here Thread here
Action for M.E. Webinar - Long Covid and Myalgic Encephalomyelitis
"Join us to hear from our Chief Executive, Sonya Chowdhury and our Medical Advisor, Dr David Strain about our exciting plans for the future." Duration: 58 minutes.
YouTube video here Thread here
VeryWell Health What long COVID Awareness Means for People with Chronic Illnesses
Great article about similarities between Long Covid and other conditions as ME and that previously neglected illnesses now may receive more awareness together with Long Covid. Comments from among others Dr. Nina Muirhead who says “Whilst it feels frustrating...I think that the wave of interest in long COVID will pull up all the little boats of chronic conditions" and that long Covid will make "patient experts more culturally acceptable".
Article here Thread here
The Atlantic Festival Science journalist Ed Yong provides a short summary of his reporting of Long Covid and ME and how research efforts must change in order to meet the needs of patients. "Long Haulers, people with ME/CFS, and others with chronic illnesses, don't have time for science to do its incremental stumble, for dogma about disease to gradually shift, for academia's gate-keeping mechanisms to slowly buckle. They need a transformative, patient-centred approach to research. They need science that acts in service of solving urgent problems, instead of padding the publication records of researchers." Duration: 4 minutes.
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Other items of interest
Royal College of Nursing From chronic fatigue to long COVID
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BreakingNews.ie 'We need to get the word out there' - Irish long Covid patients share their stories
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Digital Journal Long COVID and the connection with chronic fatigue syndrome
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Time Can Breakthrough Infections Lead to Long COVID? For an Unlucky Few, Yes
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The Atlantic What Even Counts as Science Writing Anymore? - Ed Yong
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