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News in Brief - December 2021
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Week beginning 29th November 2021
News, articles and advocacy
Europe
On 1 December, the European petition for biomedical research on ME/CFS was discussed by Members of the Committee on Petitions of the European Parliament. Evelien Van Den Brink, patient and chair of the European ME Coalition, gave a speech and highlighted the inaction of the European Commission. A recording of the meeting is available online.
Article here Thread here
Bateman Horne Center Dr Bateman has written a guide for doctors treating Covid-19 in patients with underlying ME/CFS or severe Fibromyalgia. This short pdf document includes notes on symptoms of ME/CFS, care needs and medical treatment suggestions.
PDF guide here Thread here
Cochrane
Caroline Struthers, Senior EQUATOR Research Fellow at Oxford University, has written to Toby Lasserson, Deputy Editor-in-Chief, Cochrane about problems with the review on exercise therapy for ME/CFS.
Article here Thread here
The Netherlands
The Dutch ME/CVS Stichting has created a tool to help and support young people with ME/CFS. The project is registered as a best practice in the area of stigma, discrimination, and isolation.
Article here Thread here
UK Priority Setting Partnership Survey - final week
UK residents with ME/CFS, carers and clinicians have until 13th December to choose their top 10 from a list of research areas to be prioritised for future research on ME/CFS.
Question list here Survey here Thread here
UK DecodeME "Podcast Review: The Challenges Facing ME/CFS Patients and the Future of Personalised Treatments" by Ara Schorscher-Petcu
This review published in BioNews praised the patient perspective given in the recent Genetics Podcast (see 8th November news), but hoped to hear more on scientific progress on understanding the mechanisms of ME/CFS.
Article here Thread here
...................
NICE ME/CFS guideline
UK ME organisations have produced template letters for people with ME/CFS to send to their GP about the new NICE ME/CFS guideline.
Action for ME article here Thread with links here
Sweden Sten Helmfrid, Kerstin Heiling and Sture Eriksson wrote an opinion piece about the NICE guideline for the Journal of the Swedish Medical Association. They ask for the guideline to "be a turning point for how patients with ME/CFS are treated and how the illness is portrayed in the public sphere". The opinion piece has been translated into English and is available at Researchgate.
Article here (English) and here (Swedish) Thread here
Science Norway published an opinion piece by an LP coach who criticised the NICE guideline and urged the Norwegian health authorities to ignore it. The opinion piece received several reactions:
Benedikte Monrad-Krohn and Øistein Jansen replied with their own opinion piece in Science Norway. They conclude that Norway should follow NICE and update its own guideline.
Article here Thread here
Professor Brian Hughes has also responded to the opinion piece that criticises the NICE guideline with an excellent 8 post Twitter thread.
'It is frankly embarrassing to see such pseudoscientific conspiratorialism presented as 'science opinion''
Twitter here Thread here
On the other hand, Professor Paul Garner has written a nonsensical tweet.
Thread with link to tweet here
David Tuller wrote an article titled: Lightning Process Star Complains About NICE; Struthers Nudges Cochrane to Keep Up
Tuller's guess is that the coach is upset because the NICE guideline specifically bars the method she's selling. He also writes about a letter that Caroline Struthers recently sent to Cochrane's Deputy Editor-in-Chief concerning a collaborative agreement between NICE and Cochrane. In the letter she is "seeking reassurance that NICE will manage the risk posed by potentially delegating important decisions about the quality of evidence influencing NICE's recommendations to an outside, self-regulated organisation". See also item above.
Article here Thread here
......................
Research news
USA - Center for solutions for ME/CFS Community Advisory Committee Introduces Guidelines to Accelerate Meaningful ME/CFS Research
Summary from the NIH's ME/CFS Collaborative Research Center consortium from October where the Community Advisory Committee participated and presented its work.
Article here Thread here
Australia - Open Medicine Foundation
An Update from Dr. Chris Armstrong, Director of the Melbourne ME/CFS Collaboration.
A team of 7 scientists and students are working on 15 projects including mitochondrial metabolism and the nitrogen hypothesis; and eye movements and their relationship to fatiguability in ME/CFS.
Article here Thread here
UK Karl Morten's Research group at Oxford University have given an update on their projects on Twitter. They include using Raman spectroscopy and ideas they are exploring for future studies.
Tweets here Thread here
........................
Other conditions and topics related to ME
JACC: Heart Failure
"Use of Cardiopulmonary Stress Testing for Patients With Unexplained Dyspnea Post–Coronavirus Disease" by Mancini et al
'The authors performed CPET and symptom assessment for ME/CFS in 41 patients with PASC 8.9 ± 3.3 months after COVID'. The abstract concludes: 'Circulatory impairment, abnormal ventilatory pattern, and ME/CFS are common in patients with PASC. The dysfunctional breathing, resting hypocapnia, and ME/CFS may contribute to symptoms. CPET is a valuable tool to assess these patients'.
Paper here Thread here
NPR "For patients with long COVID, chronic fatigue syndrome may offer a guiding star"
Article includes interviews with among others ME sufferer and Body Politic board member Alison Sbrana and Jamie Seltzer from MEAction who says "We definitely need to make use of the path that we've beaten down over time and start basing our hypotheses off of what we've seen in these diseases with other labels"
Article here Thread here
John Hopkins University - Hub Young people, long Covid
Contains interview with among others Dr. Peter Rowe, director of the Chronic Fatigue Clinic at Johns Hopkin's Children's Center who says that the cardinal symptoms of CFS are also cardinal symptoms of long COVID. He also says that the severity of the initial illness often predicts chronic symptoms in mononucleosis, but that doesn't always seem to be the case with Covid-19.
Article here Thread here
Patient-led Research Collaborative has written an open letter regarding the RECOVER initiative to study Long COVID where they share concerns that the initiative "is in grave danger of failing at its goals". They suggest a "comprehensive and adequately resourced patient engagement structure" and that post-viral illness experts (including ME) must be integrated into the Initiative. Organisations and individuals can co sign the letter.
Open letter here Co sign here Thread here
Philly Voice Chronic fatigue syndrome may provide valuable insights into long COVID
Article here Thread here
........................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
Europe
On 1 December, the European petition for biomedical research on ME/CFS was discussed by Members of the Committee on Petitions of the European Parliament. Evelien Van Den Brink, patient and chair of the European ME Coalition, gave a speech and highlighted the inaction of the European Commission. A recording of the meeting is available online.
Article here Thread here
Bateman Horne Center Dr Bateman has written a guide for doctors treating Covid-19 in patients with underlying ME/CFS or severe Fibromyalgia. This short pdf document includes notes on symptoms of ME/CFS, care needs and medical treatment suggestions.
PDF guide here Thread here
Cochrane
Caroline Struthers, Senior EQUATOR Research Fellow at Oxford University, has written to Toby Lasserson, Deputy Editor-in-Chief, Cochrane about problems with the review on exercise therapy for ME/CFS.
Article here Thread here
The Netherlands
The Dutch ME/CVS Stichting has created a tool to help and support young people with ME/CFS. The project is registered as a best practice in the area of stigma, discrimination, and isolation.
Article here Thread here
UK Priority Setting Partnership Survey - final week
UK residents with ME/CFS, carers and clinicians have until 13th December to choose their top 10 from a list of research areas to be prioritised for future research on ME/CFS.
Question list here Survey here Thread here
UK DecodeME "Podcast Review: The Challenges Facing ME/CFS Patients and the Future of Personalised Treatments" by Ara Schorscher-Petcu
This review published in BioNews praised the patient perspective given in the recent Genetics Podcast (see 8th November news), but hoped to hear more on scientific progress on understanding the mechanisms of ME/CFS.
Article here Thread here
...................
NICE ME/CFS guideline
UK ME organisations have produced template letters for people with ME/CFS to send to their GP about the new NICE ME/CFS guideline.
Action for ME article here Thread with links here
Sweden Sten Helmfrid, Kerstin Heiling and Sture Eriksson wrote an opinion piece about the NICE guideline for the Journal of the Swedish Medical Association. They ask for the guideline to "be a turning point for how patients with ME/CFS are treated and how the illness is portrayed in the public sphere". The opinion piece has been translated into English and is available at Researchgate.
Article here (English) and here (Swedish) Thread here
Science Norway published an opinion piece by an LP coach who criticised the NICE guideline and urged the Norwegian health authorities to ignore it. The opinion piece received several reactions:
Benedikte Monrad-Krohn and Øistein Jansen replied with their own opinion piece in Science Norway. They conclude that Norway should follow NICE and update its own guideline.
Article here Thread here
Professor Brian Hughes has also responded to the opinion piece that criticises the NICE guideline with an excellent 8 post Twitter thread.
'It is frankly embarrassing to see such pseudoscientific conspiratorialism presented as 'science opinion''
Twitter here Thread here
On the other hand, Professor Paul Garner has written a nonsensical tweet.
Thread with link to tweet here
David Tuller wrote an article titled: Lightning Process Star Complains About NICE; Struthers Nudges Cochrane to Keep Up
Tuller's guess is that the coach is upset because the NICE guideline specifically bars the method she's selling. He also writes about a letter that Caroline Struthers recently sent to Cochrane's Deputy Editor-in-Chief concerning a collaborative agreement between NICE and Cochrane. In the letter she is "seeking reassurance that NICE will manage the risk posed by potentially delegating important decisions about the quality of evidence influencing NICE's recommendations to an outside, self-regulated organisation". See also item above.
Article here Thread here
......................
Research news
USA - Center for solutions for ME/CFS Community Advisory Committee Introduces Guidelines to Accelerate Meaningful ME/CFS Research
Summary from the NIH's ME/CFS Collaborative Research Center consortium from October where the Community Advisory Committee participated and presented its work.
Article here Thread here
Australia - Open Medicine Foundation
An Update from Dr. Chris Armstrong, Director of the Melbourne ME/CFS Collaboration.
A team of 7 scientists and students are working on 15 projects including mitochondrial metabolism and the nitrogen hypothesis; and eye movements and their relationship to fatiguability in ME/CFS.
Article here Thread here
UK Karl Morten's Research group at Oxford University have given an update on their projects on Twitter. They include using Raman spectroscopy and ideas they are exploring for future studies.
Tweets here Thread here
........................
Other conditions and topics related to ME
JACC: Heart Failure
"Use of Cardiopulmonary Stress Testing for Patients With Unexplained Dyspnea Post–Coronavirus Disease" by Mancini et al
'The authors performed CPET and symptom assessment for ME/CFS in 41 patients with PASC 8.9 ± 3.3 months after COVID'. The abstract concludes: 'Circulatory impairment, abnormal ventilatory pattern, and ME/CFS are common in patients with PASC. The dysfunctional breathing, resting hypocapnia, and ME/CFS may contribute to symptoms. CPET is a valuable tool to assess these patients'.
Paper here Thread here
NPR "For patients with long COVID, chronic fatigue syndrome may offer a guiding star"
Article includes interviews with among others ME sufferer and Body Politic board member Alison Sbrana and Jamie Seltzer from MEAction who says "We definitely need to make use of the path that we've beaten down over time and start basing our hypotheses off of what we've seen in these diseases with other labels"
Article here Thread here
John Hopkins University - Hub Young people, long Covid
Contains interview with among others Dr. Peter Rowe, director of the Chronic Fatigue Clinic at Johns Hopkin's Children's Center who says that the cardinal symptoms of CFS are also cardinal symptoms of long COVID. He also says that the severity of the initial illness often predicts chronic symptoms in mononucleosis, but that doesn't always seem to be the case with Covid-19.
Article here Thread here
Patient-led Research Collaborative has written an open letter regarding the RECOVER initiative to study Long COVID where they share concerns that the initiative "is in grave danger of failing at its goals". They suggest a "comprehensive and adequately resourced patient engagement structure" and that post-viral illness experts (including ME) must be integrated into the Initiative. Organisations and individuals can co sign the letter.
Open letter here Co sign here Thread here
Philly Voice Chronic fatigue syndrome may provide valuable insights into long COVID
Article here Thread here
........................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 6th December 2021
News, articles and advocacy
Europe
On 1 December 2021, the Committee on Petitions of the European Parliament (PETI) held a second discussion of petition 0204/2019 on biomedical research on ME/CFS. Evelien Van Den Brink, co-founder of the European ME Coalition (EMEC), gave a brief update on the current situation and highlighted the lack of action by the European Commission. Several Members of Parliament urged the Commission to make research funds for ME/CFS available.
Article here Thread here
NICE ME/CFS guidelines Freedom of Information
"Text-message lobbying of senior NICE staff by individuals at NHS England and the Royal College of Psychiatrists in days before ME/CFS guideline pause" by Dom Salisbury
This blog article discusses material made public through an FOI request to NICE, and another to NHS England. It reveals attempts made by a member of the Royal College of Psychiatrists, and by the mental health team at NHS England, to persuade NICE not to publish the Evidence reviews and/or the Guideline.
Article here Thread here (members only)
The Canary "An FOI reveals a rot at the heart of parts of the medical establishment" by Steve Topple, covers the same FOI material, '... they paint a picture of attempted subversion of NICE procedures and potentially even corruption.'
Article here Thread here (members only)
Denmark
A Danish journal about neurology has published three articles about the NICE guidelines. Psychologist Peter La Cour is supportive of the new guidelines, Professor Per Fink is not. The articles mention the protests from the Royal College of Physicians.
Thread with links and quotes here
MEAction UK video Q&A with two members of the NICE ME/CFS guideline committee, lay member Adam Lowe and nurse Caroline Kingdon held on 30th November, is now available on YouTube. Duration 1 hour 11 minutes.
Video here Thread here
A Life Hidden The Truth (and Myths) About Positivity and Determination
Good reflections from Naomi Whittingham around positive thinking and disability. "The emphasis should be on honouring one's own unique challenges; not on denying their existence".
Article here Thread here
Sweden TV4 had a short news segment about the opening of an ME ward at Norrland University Hospital. Professor Jonas Bergquist was interviewed and said we now know more about underlying causes to ME.
News segment here Thread here
Norway A recent lecture from an ongoing research project about the meeting between the health care services and ME patients has been uploaded to YouTube. Researcher Anne Kielland gives an excellent presentation about harmful relations between health services and ME patients including analyses and examples of power structures in disfavour of the patient group.
Lecture here (Norwegian only) Thread here
..............
Research and commentary
Preprints
“You + ME Registry: A Research Platform to Facilitate Clinical and Therapeutic Discoveries in ME/CFS and Related Diseases” by Ramillier et al.
In this preprint, members of the Solve ME/CFS Initiative describe how they set up the You + ME Registry which collects data from patients with ME/CFS, Long COVID, and healthy controls. The registry also includes a symptom tracking app and a biorepository.
Article here Thread here.
Journal of Translational Medicine
“The maintained attention assessment in patients affected by ME/CFS: a reliable biomarker?” by Murga et al.
This Spanish study reports that while general cognition remains preserved in most ME/CFS patients, maintained attention is clearly deficient compared to healthy controls.
Article here Thread here
Chronic illness
“Using Communities of Practice Theory to Understand the Crisis of Identity in CFS/ME” by Murray & Turner.
This study explored the crisis of identity, given that ME/CFS is often met with skepticism or disbelief. The authors set up a closed Facebook group to gather qualitative data from 22 ME/CFS patients. They conclude that “Participation in supportive communities enables CFS/ME identities to emerge as a platform for positive change.”
Article here Thread here
Occupational Medicine
“Chronic fatigue syndrome and occupational status: a retrospective longitudinal study” by Stevelink et al.
The research team of Trudie Chalder reports occupational data on 316 patients who provided data after received specialized treatment for ME/CFS. Only a small proportion changed their work status (loosely defined) following treatment.
Article here Thread here
Trial by Error by David Tuller 'Professor Chalder Messes Up Again in New Paper on CFS and Employment Outcomes' and 'More on that Disastrous Employment Paper from Professor Chalder and Colleagues'.
About mis-statements of statistics in the above paper on CFS and occupational status. "Clearly, these statements need to be formally corrected. Also, the journal clearly needs to investigate why its peer review process failed so dramatically".
The second article raises many other issues with the data, including the high drop out rate, and the authors' continuing focus on what they judge to be patients' "unhelpful beliefs".
Articles here and here Thread here and here
..............
Coming events
CDC Stakeholder Engagement and Communication (SEC) Calls
Zoom webinar December 16th at 3:00 PM ET. Agenda: "Updates from CDC" by Elizabeth Unger, PhD, MD. "Is ME/CFS Another Face of Long Covid?" by Hector Bonilla, MD. Q&A.
More information and registration here Thread here
...............
Other conditions and topics related to ME
Archives of Rheumatology
"The evaluation of nailfold capillaroscopy pattern in patients with fibromyalgia" by Benlidayı et al.
30 patients and 30 matched controls. Significant between group differences were found in several nailfold capillary features using a digital microscope under a magnification of 200X. Within the FM group these measures were not related to symptoms or to whether they had joint hypermobility.
Paper here Thread here
Medscape "In Long COVID, CPET Finds Abnormalities Other Tests Don't"
Article by Miriam Tucker with comments from among others Dr. David Systrom who says data from a recent trial on CPET in Long Covid patients align with prior work in PASC and ME/CFS.
Article here Thread here
Other items of interest
Washington Square News Patient group says Langone long COVID research forgets patients
Article here Thread here
Barron's Where Are the Workers? Millions Are Sick With 'Long Covid.'
Article here Thread here
Yahoo Long COVID patients and doctors detail the growing 'mass disabling event' in America
Article here Thread here
IDEAS.TED.COM I was a healthy 38-year-old... but now I have long COVID
Article here Thread here
The Washington Post Long Covid is destroying careers, leaving economic distress in its wake
Article here (paywalled) Thread here
..............
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
Europe
On 1 December 2021, the Committee on Petitions of the European Parliament (PETI) held a second discussion of petition 0204/2019 on biomedical research on ME/CFS. Evelien Van Den Brink, co-founder of the European ME Coalition (EMEC), gave a brief update on the current situation and highlighted the lack of action by the European Commission. Several Members of Parliament urged the Commission to make research funds for ME/CFS available.
Article here Thread here
NICE ME/CFS guidelines Freedom of Information
"Text-message lobbying of senior NICE staff by individuals at NHS England and the Royal College of Psychiatrists in days before ME/CFS guideline pause" by Dom Salisbury
This blog article discusses material made public through an FOI request to NICE, and another to NHS England. It reveals attempts made by a member of the Royal College of Psychiatrists, and by the mental health team at NHS England, to persuade NICE not to publish the Evidence reviews and/or the Guideline.
Article here Thread here (members only)
The Canary "An FOI reveals a rot at the heart of parts of the medical establishment" by Steve Topple, covers the same FOI material, '... they paint a picture of attempted subversion of NICE procedures and potentially even corruption.'
Article here Thread here (members only)
Denmark
A Danish journal about neurology has published three articles about the NICE guidelines. Psychologist Peter La Cour is supportive of the new guidelines, Professor Per Fink is not. The articles mention the protests from the Royal College of Physicians.
Thread with links and quotes here
MEAction UK video Q&A with two members of the NICE ME/CFS guideline committee, lay member Adam Lowe and nurse Caroline Kingdon held on 30th November, is now available on YouTube. Duration 1 hour 11 minutes.
Video here Thread here
A Life Hidden The Truth (and Myths) About Positivity and Determination
Good reflections from Naomi Whittingham around positive thinking and disability. "The emphasis should be on honouring one's own unique challenges; not on denying their existence".
Article here Thread here
Sweden TV4 had a short news segment about the opening of an ME ward at Norrland University Hospital. Professor Jonas Bergquist was interviewed and said we now know more about underlying causes to ME.
News segment here Thread here
Norway A recent lecture from an ongoing research project about the meeting between the health care services and ME patients has been uploaded to YouTube. Researcher Anne Kielland gives an excellent presentation about harmful relations between health services and ME patients including analyses and examples of power structures in disfavour of the patient group.
Lecture here (Norwegian only) Thread here
..............
Research and commentary
Preprints
“You + ME Registry: A Research Platform to Facilitate Clinical and Therapeutic Discoveries in ME/CFS and Related Diseases” by Ramillier et al.
In this preprint, members of the Solve ME/CFS Initiative describe how they set up the You + ME Registry which collects data from patients with ME/CFS, Long COVID, and healthy controls. The registry also includes a symptom tracking app and a biorepository.
Article here Thread here.
Journal of Translational Medicine
“The maintained attention assessment in patients affected by ME/CFS: a reliable biomarker?” by Murga et al.
This Spanish study reports that while general cognition remains preserved in most ME/CFS patients, maintained attention is clearly deficient compared to healthy controls.
Article here Thread here
Chronic illness
“Using Communities of Practice Theory to Understand the Crisis of Identity in CFS/ME” by Murray & Turner.
This study explored the crisis of identity, given that ME/CFS is often met with skepticism or disbelief. The authors set up a closed Facebook group to gather qualitative data from 22 ME/CFS patients. They conclude that “Participation in supportive communities enables CFS/ME identities to emerge as a platform for positive change.”
Article here Thread here
Occupational Medicine
“Chronic fatigue syndrome and occupational status: a retrospective longitudinal study” by Stevelink et al.
The research team of Trudie Chalder reports occupational data on 316 patients who provided data after received specialized treatment for ME/CFS. Only a small proportion changed their work status (loosely defined) following treatment.
Article here Thread here
Trial by Error by David Tuller 'Professor Chalder Messes Up Again in New Paper on CFS and Employment Outcomes' and 'More on that Disastrous Employment Paper from Professor Chalder and Colleagues'.
About mis-statements of statistics in the above paper on CFS and occupational status. "Clearly, these statements need to be formally corrected. Also, the journal clearly needs to investigate why its peer review process failed so dramatically".
The second article raises many other issues with the data, including the high drop out rate, and the authors' continuing focus on what they judge to be patients' "unhelpful beliefs".
Articles here and here Thread here and here
..............
Coming events
CDC Stakeholder Engagement and Communication (SEC) Calls
Zoom webinar December 16th at 3:00 PM ET. Agenda: "Updates from CDC" by Elizabeth Unger, PhD, MD. "Is ME/CFS Another Face of Long Covid?" by Hector Bonilla, MD. Q&A.
More information and registration here Thread here
...............
Other conditions and topics related to ME
Archives of Rheumatology
"The evaluation of nailfold capillaroscopy pattern in patients with fibromyalgia" by Benlidayı et al.
30 patients and 30 matched controls. Significant between group differences were found in several nailfold capillary features using a digital microscope under a magnification of 200X. Within the FM group these measures were not related to symptoms or to whether they had joint hypermobility.
Paper here Thread here
Medscape "In Long COVID, CPET Finds Abnormalities Other Tests Don't"
Article by Miriam Tucker with comments from among others Dr. David Systrom who says data from a recent trial on CPET in Long Covid patients align with prior work in PASC and ME/CFS.
Article here Thread here
Other items of interest
Washington Square News Patient group says Langone long COVID research forgets patients
Article here Thread here
Barron's Where Are the Workers? Millions Are Sick With 'Long Covid.'
Article here Thread here
Yahoo Long COVID patients and doctors detail the growing 'mass disabling event' in America
Article here Thread here
IDEAS.TED.COM I was a healthy 38-year-old... but now I have long COVID
Article here Thread here
The Washington Post Long Covid is destroying careers, leaving economic distress in its wake
Article here (paywalled) Thread here
..............
S4ME social media: Facebook, Twitter and YouTube
Week beginning 13th December 2021
Dialogues for a Neglected Illness
This project funded by the Wellcome Foundation has produced a series of excellent videos on different aspects of ME/CFS. The films have been made by Natalie Boulton and Josh Biggs. The final two films have been released this week:
Revised prologue A dangerous model abandoned as NICE seeks to reform care for ME:CFS patients in 2021
This 11 minute video features researchers, clinicians and patients explaining why GET and CBT are ineffective and harmful. Relevant sections are quoted from the new NICE guideline. The video is dedicated to the memory of Graham McPhee.
Video here Thread here
Final film: The Tangled Story of ME/CFS: Controversy, Denigration and Ignorance.
A hard hitting overview of the history of misunderstanding, bad science and mistreatment of people with ME/CFS. Duration 1 hour 11 minutes. It will also be available as separate chapters.
Chapter 1 - ME: the Story Begins
Chapter 2 - ME is rebranded as a psychogenic illness: chronic fatigue syndrome
Chapter 3 - A confusing medley of names and definitions undermines research efforts
Chapter 4 - The widespread and pernicious impact of a careerist psychiatric lobby
Chapter 5 - The devastating failure of the medical profession
Chapter 6 - Fundamental Systemic Injustice
Video here Thread here
...............
Norway - responses to the UK NICE ME/CFS guideline
The NICE guideline from UK has spurred ongoing debates about ME in several newspapers.
Georg Espolin Johnson MD says in Aftenposten that the guideline is not representing a final answer as there's been debate about it in the UK. He wants further exploration of how psychology is a contributing factor of development and perpetuation of ME.
Dr. Johnson's opinion piece here Thread here
Professor Rolf Rønning wrote in Dagsavisen about how and why ME patients became an underclass in healthcare.
Prof. Rønning's opinion piece here Thread here
An open letter in Aftenposten signed by 235 ME patients replies to criticism against the NICE guideline made in a previous opinion piece. The letter says the guideline gives them hope and that they don't find it right that a minority who are against the guideline should be above biomedical research, international health authorities and the majority of patients.
Open letter here Thread here
Professor emeritus and psychiatrist Einar Kringlen claimed in Klassekampen that there are no scientific evidence for ME and predicts that it will disappear within ten years. He received a reply from professor Petter C. Borchgrevink saying Kringlen is displaying contempt for the patient group. Another reply came from professors Ola Didrik Saugstad and Rolf Rønning calling Kringlen's ignorance catastrophic.
Prof. Kringlen's opinion piece here Prof. Borchgrevink's opinion piece here Professors Saugstad/Rønning's opinion piece here Thread here
.................
Other news, articles and advocacy
Centers for Disease Control and Prevention (CDC)
On 16 December 2021, there was a CDC stakeholder engagement call. Dr. Beth Unger stated that the evidence review the CDC had contracted, and which received criticism from the ME/CFS community, will be published on the CDC website but not in a peer-reviewed journal.
Thread here
UK Priority Setting Partnership
Over 2000 people voted for their top ten research priorities. The next stage is a series of 3 online workshops in March 2022. UK volunteers are invited to apply by 11th January to participate in these to help narrow down to an overall top ten.
Details here Thread here
UK Employer News "Invisible disabilities: Supporting your colleagues with ME/CFS" by Lisa Baker
Highlights the new NICE guideline and the need for employers to recognise the needs of employees with ME/CFS and those with Long Covid.
Article here Thread here
................
Research and commentary
Frontiers in Physiology - Exercise Physiology
"Markers of Cardiac Autonomic Function During Consecutive Day Peak Exercise Tests in People With ME/CFS" by Nelson et al
2 day CPETs were carried out with 16 people with ME/CFS and 10 healthy controls in order to see whether heart rate characteristics could be used to differentiate people with ME/CFS. Although there was a significant between group difference in heart rate recovery, low sensitivity and specificity limit its potential usefulness as a biomarker.
Paper here Thread here
Frontiers in Neurology
"Lessons From Heat Stroke for Understanding ME/CFS" by Stanculescu, Bergquist et al
This hypothesis article gives an overview of the pathophysiological mechanisms during heat stroke and describes similar mechanisms found in ME/CFS. The authors suggest: 'The human studies and animal models of heat stroke provide an explanation for the self-perpetuation of homeostatic imbalance centered around intestinal wall injury, which could also inform the understanding of ME/CFS.'
Article here Thread here
Virology Blog
“Trial By Error: A Letter to Occupational Medicine From Brian Hughes & Me About Prof Chalder’s Latest Disaster”
David Tuller and Brian Hughes criticize a recent paper by the research team of Trudie Chalder on the occupational status of ME/CFS patients. They highlight multiple statistical errors in how the results were presented and ask the journal to retract the paper.
Article here Thread here
.................
Other conditions and topics related to ME
UK Parliamentary Office of Science and Technology
"Long COVID: The long-term health effects of COVID-19"
A rapid response briefing paper on Long covid including epidemiology, symptoms, effects of vaccines, lack of treatment, research, NHS provision, unknowns and research needs. It covers both adults and children.
Article here Thread here
Patient Why is ME/CFS research key to understanding long COVID
On how research into the interconnection between Long Covid and CFS/ME will benefit both.
Article here Thread here
WYPR Living with long haul COVID: Views from doctors, advocates, survivors
50 minute radio programme on Long Covid and post viral illnesses. Guests: Dr. Alba Azola and Dr. Ann Parker - co-directors of the Johns Hopkins Post-Acute COVID-19-team, Emily Taylor - director of advocacy and community relations as Solve M.E. and patient advocate Chimére Smith.
Programme here Thread here
Gez Medinger Long Covid vs ME/CFS - Why There's Much We Can Learn From The Similarities
A conversation between Long Covid patient advocate Gez Medinger and Dr. Ronald Tompkins MD, chief medical officer of OMF and co-director of the ME/CFS collaboration at Harvard affiliated hospitals. Duration: 34 minutes.
YouTube video here Thread here
Other items of interest
Global News Why are they still sick? The latest clues in the mystery of COVID-19 long haulers
Article here Thread here
..................
S4ME social media: Facebook, Twitter and YouTube
Dialogues for a Neglected Illness
This project funded by the Wellcome Foundation has produced a series of excellent videos on different aspects of ME/CFS. The films have been made by Natalie Boulton and Josh Biggs. The final two films have been released this week:
Revised prologue A dangerous model abandoned as NICE seeks to reform care for ME:CFS patients in 2021
This 11 minute video features researchers, clinicians and patients explaining why GET and CBT are ineffective and harmful. Relevant sections are quoted from the new NICE guideline. The video is dedicated to the memory of Graham McPhee.
Video here Thread here
Final film: The Tangled Story of ME/CFS: Controversy, Denigration and Ignorance.
A hard hitting overview of the history of misunderstanding, bad science and mistreatment of people with ME/CFS. Duration 1 hour 11 minutes. It will also be available as separate chapters.
Chapter 1 - ME: the Story Begins
Chapter 2 - ME is rebranded as a psychogenic illness: chronic fatigue syndrome
Chapter 3 - A confusing medley of names and definitions undermines research efforts
Chapter 4 - The widespread and pernicious impact of a careerist psychiatric lobby
Chapter 5 - The devastating failure of the medical profession
Chapter 6 - Fundamental Systemic Injustice
Video here Thread here
...............
Norway - responses to the UK NICE ME/CFS guideline
The NICE guideline from UK has spurred ongoing debates about ME in several newspapers.
Georg Espolin Johnson MD says in Aftenposten that the guideline is not representing a final answer as there's been debate about it in the UK. He wants further exploration of how psychology is a contributing factor of development and perpetuation of ME.
Dr. Johnson's opinion piece here Thread here
Professor Rolf Rønning wrote in Dagsavisen about how and why ME patients became an underclass in healthcare.
Prof. Rønning's opinion piece here Thread here
An open letter in Aftenposten signed by 235 ME patients replies to criticism against the NICE guideline made in a previous opinion piece. The letter says the guideline gives them hope and that they don't find it right that a minority who are against the guideline should be above biomedical research, international health authorities and the majority of patients.
Open letter here Thread here
Professor emeritus and psychiatrist Einar Kringlen claimed in Klassekampen that there are no scientific evidence for ME and predicts that it will disappear within ten years. He received a reply from professor Petter C. Borchgrevink saying Kringlen is displaying contempt for the patient group. Another reply came from professors Ola Didrik Saugstad and Rolf Rønning calling Kringlen's ignorance catastrophic.
Prof. Kringlen's opinion piece here Prof. Borchgrevink's opinion piece here Professors Saugstad/Rønning's opinion piece here Thread here
.................
Other news, articles and advocacy
Centers for Disease Control and Prevention (CDC)
On 16 December 2021, there was a CDC stakeholder engagement call. Dr. Beth Unger stated that the evidence review the CDC had contracted, and which received criticism from the ME/CFS community, will be published on the CDC website but not in a peer-reviewed journal.
Thread here
UK Priority Setting Partnership
Over 2000 people voted for their top ten research priorities. The next stage is a series of 3 online workshops in March 2022. UK volunteers are invited to apply by 11th January to participate in these to help narrow down to an overall top ten.
Details here Thread here
UK Employer News "Invisible disabilities: Supporting your colleagues with ME/CFS" by Lisa Baker
Highlights the new NICE guideline and the need for employers to recognise the needs of employees with ME/CFS and those with Long Covid.
Article here Thread here
................
Research and commentary
Frontiers in Physiology - Exercise Physiology
"Markers of Cardiac Autonomic Function During Consecutive Day Peak Exercise Tests in People With ME/CFS" by Nelson et al
2 day CPETs were carried out with 16 people with ME/CFS and 10 healthy controls in order to see whether heart rate characteristics could be used to differentiate people with ME/CFS. Although there was a significant between group difference in heart rate recovery, low sensitivity and specificity limit its potential usefulness as a biomarker.
Paper here Thread here
Frontiers in Neurology
"Lessons From Heat Stroke for Understanding ME/CFS" by Stanculescu, Bergquist et al
This hypothesis article gives an overview of the pathophysiological mechanisms during heat stroke and describes similar mechanisms found in ME/CFS. The authors suggest: 'The human studies and animal models of heat stroke provide an explanation for the self-perpetuation of homeostatic imbalance centered around intestinal wall injury, which could also inform the understanding of ME/CFS.'
Article here Thread here
Virology Blog
“Trial By Error: A Letter to Occupational Medicine From Brian Hughes & Me About Prof Chalder’s Latest Disaster”
David Tuller and Brian Hughes criticize a recent paper by the research team of Trudie Chalder on the occupational status of ME/CFS patients. They highlight multiple statistical errors in how the results were presented and ask the journal to retract the paper.
Article here Thread here
.................
Other conditions and topics related to ME
UK Parliamentary Office of Science and Technology
"Long COVID: The long-term health effects of COVID-19"
A rapid response briefing paper on Long covid including epidemiology, symptoms, effects of vaccines, lack of treatment, research, NHS provision, unknowns and research needs. It covers both adults and children.
Article here Thread here
Patient Why is ME/CFS research key to understanding long COVID
On how research into the interconnection between Long Covid and CFS/ME will benefit both.
Article here Thread here
WYPR Living with long haul COVID: Views from doctors, advocates, survivors
50 minute radio programme on Long Covid and post viral illnesses. Guests: Dr. Alba Azola and Dr. Ann Parker - co-directors of the Johns Hopkins Post-Acute COVID-19-team, Emily Taylor - director of advocacy and community relations as Solve M.E. and patient advocate Chimére Smith.
Programme here Thread here
Gez Medinger Long Covid vs ME/CFS - Why There's Much We Can Learn From The Similarities
A conversation between Long Covid patient advocate Gez Medinger and Dr. Ronald Tompkins MD, chief medical officer of OMF and co-director of the ME/CFS collaboration at Harvard affiliated hospitals. Duration: 34 minutes.
YouTube video here Thread here
Other items of interest
Global News Why are they still sick? The latest clues in the mystery of COVID-19 long haulers
Article here Thread here
..................
S4ME social media: Facebook, Twitter and YouTube
Last edited:
Week beginning 20th December 2021
Seasons Greetings to all our readers
News, articles and advocacy
USA - Solve M.E. Advocacy Month 2022 Survey
Solve ME is expanding their annual Advocacy Week to Advocacy Month which will be throughout May 2022. They have made a survey so that people can offer feedback and ideas for them to use in their planning of events, training and policy asks.
Survey here Thread here
Trial By Error by David Tuller Mayo Clinic Treatment Plan Cites "Deconditioning," "Perfectionism," and CBT
About Mayo Clinic's poor record when it comes to ME/CFS, including a seriously misinformed ME treatment plan from the main Mayo campus in Rochester, USA.
Article here Thread here
Medscape A Fresh Look at Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Diagnosis and Management of a Multisystem Illness
An online Continuing Education Medical (CME) course about ME with lectures from three doctors and a short quiz. Mentions PEM, POTS and other useful knowledge for clinicians.
CME course here Thread here
The Netherlands
The Dutch ME/CFS Research program has launched its first call for proposals. It focuses on developing an ME/CFS registry and biobank and has a budget of 10 million euros. The call is intended for research consortia, who can apply for funding to support their collaboration and conduct research on ME/CFS. The deadline is March 1, 2022.
Article here Thread here
Lectures "ME-konferanse Stryn" organised a digital ME conference in April. Lectures by professor Mady Hornig on immune signatures and Anne Kielland on health care services have been uploaded on YouTube with English subtitles.
Prof. Mady Hornig's lecture here Anne Kielland's lecture here Thread here
UK Forward ME has sent a review of 2021 to its members.
Key points include the publication of the NICE guideline, collaboration between UK ME charities, and the need for medical education.
Review here Thread here
Denmark The local newspaper Ugeavisen Esbjerg has over a long time covered the treatment of ME patients in Denmark where the disease is viewed as a functional disorder. The newspaper has closely followed a family with a daughter who suffers from severe ME. Now the daughter, Marie Louise Ilsøe Gustavussen, has written and shared her account about a health care system who failed her and caused further deterioration instead of help.
Marie Louise's account here (Danish) Thread with links to more articles here
Psychology Today
“Differentiating Fibromyalgia, Depression, and CFS” by Kristen Fuller
In a problematic blog post on the relationship between fibromyalgia, depression and chronic fatigue syndrome, Fuller argues that certain personality traits are associated with the development of fibromyalgia and depression.
Article here Thread here
The Canary "ME: the year in review – sickness, lies, and subversion"
Steve Topple gives his perspective on the year for people with ME in the UK, with the ups and downs of the NICE guideline and media responses, and the arrival of Long Covid. He links to a series of tweets responding to his invitation to share positive moments.
Article here Thread here
..............
Research and commentary
Medicina
"Orthostatic Symptoms and Reductions in Cerebral Blood Flow in Long-Haul COVID-19 Patients: Similarities with ME/CFS" by van Campen et al.
Tilt table tests on small samples of people with Long Covid and ME/CFS showed similar results. Cerebral blood flow was reduced compared with healthy controls. The ten Long Covid patients fulfilled ME/CFS diagnostic criteria.
Paper here Thread here
Journal of Clinical Medicine
"Patients with ME/CFS Greatly Improved Fatigue Symptoms When Treated with Oxygen-Ozone Autohemotherapy" by Tirelli et al.
In this Italian study 200 patients had one or two treatments in which 200 ml of their blood was drawn, treated with Oxygen-Ozone and returned. A significant proportion of the patients scores on a fatigue questionnaire improved from before treatment to one month after treatment. There was no control group, and no long term follow up reported.
Paper here Thread here
bioRxiv Preprint (not yet peer reviewed)
"A Cartography of Differential Gene Methylation in ME/CFS: Different Network Roles in the Protein-Protein Interactions Network Play Different, Biologically Relevant, Roles" by Wilberforce and Riva
Analysis of data aggregated from 3 studies pointed to some hub genes that relate to immune system processes, mitochondrial function and dopamine signalling.
Article here Thread here
Trial By Error
“An Exchange of Letters Concerning Professor Chalder’s Latest Disaster of a Paper”
David Tuller and Brian Hughes have published about their correspondence with an assistant editor at Occupational Medicine concerning a problematic ME/CFS paper by the research team of Trudie Chalder. The assistant editor invited them to submit a letter to the journal while Tuller & Hughes call for retraction of the paper.
Article here Thread here
ME/CFS Skeptic
“2021: Looking back at a year of ME/CFS research”
This blog post gives and overview and summary of the most interesting findings in ME/CFS research in 2021.
Article here Thread here
..............
Other conditions and topics related to ME
IPS 'With Long Covid, there's a minimisation push'
Informative interview with professor Brendan Delany from the Faculty of Medicine at Imperial College London about Long Covid. He warns against treating Covid-19 as an acute condition only, and brings in the history of neglect of complex medical illness after viral illness.
Article here Thread here
The Guardian Don't dismiss Omicron as 'mild'. Take it from a Covid long-hauler by JD Davids
Article here Thread here
...............
S4ME social media: Facebook, Twitter and YouTube
Seasons Greetings to all our readers News, articles and advocacy
USA - Solve M.E. Advocacy Month 2022 Survey
Solve ME is expanding their annual Advocacy Week to Advocacy Month which will be throughout May 2022. They have made a survey so that people can offer feedback and ideas for them to use in their planning of events, training and policy asks.
Survey here Thread here
Trial By Error by David Tuller Mayo Clinic Treatment Plan Cites "Deconditioning," "Perfectionism," and CBT
About Mayo Clinic's poor record when it comes to ME/CFS, including a seriously misinformed ME treatment plan from the main Mayo campus in Rochester, USA.
Article here Thread here
Medscape A Fresh Look at Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Diagnosis and Management of a Multisystem Illness
An online Continuing Education Medical (CME) course about ME with lectures from three doctors and a short quiz. Mentions PEM, POTS and other useful knowledge for clinicians.
CME course here Thread here
The Netherlands
The Dutch ME/CFS Research program has launched its first call for proposals. It focuses on developing an ME/CFS registry and biobank and has a budget of 10 million euros. The call is intended for research consortia, who can apply for funding to support their collaboration and conduct research on ME/CFS. The deadline is March 1, 2022.
Article here Thread here
Lectures "ME-konferanse Stryn" organised a digital ME conference in April. Lectures by professor Mady Hornig on immune signatures and Anne Kielland on health care services have been uploaded on YouTube with English subtitles.
Prof. Mady Hornig's lecture here Anne Kielland's lecture here Thread here
UK Forward ME has sent a review of 2021 to its members.
Key points include the publication of the NICE guideline, collaboration between UK ME charities, and the need for medical education.
Review here Thread here
Denmark The local newspaper Ugeavisen Esbjerg has over a long time covered the treatment of ME patients in Denmark where the disease is viewed as a functional disorder. The newspaper has closely followed a family with a daughter who suffers from severe ME. Now the daughter, Marie Louise Ilsøe Gustavussen, has written and shared her account about a health care system who failed her and caused further deterioration instead of help.
Marie Louise's account here (Danish) Thread with links to more articles here
Psychology Today
“Differentiating Fibromyalgia, Depression, and CFS” by Kristen Fuller
In a problematic blog post on the relationship between fibromyalgia, depression and chronic fatigue syndrome, Fuller argues that certain personality traits are associated with the development of fibromyalgia and depression.
Article here Thread here
The Canary "ME: the year in review – sickness, lies, and subversion"
Steve Topple gives his perspective on the year for people with ME in the UK, with the ups and downs of the NICE guideline and media responses, and the arrival of Long Covid. He links to a series of tweets responding to his invitation to share positive moments.
Article here Thread here
..............
Research and commentary
Medicina
"Orthostatic Symptoms and Reductions in Cerebral Blood Flow in Long-Haul COVID-19 Patients: Similarities with ME/CFS" by van Campen et al.
Tilt table tests on small samples of people with Long Covid and ME/CFS showed similar results. Cerebral blood flow was reduced compared with healthy controls. The ten Long Covid patients fulfilled ME/CFS diagnostic criteria.
Paper here Thread here
Journal of Clinical Medicine
"Patients with ME/CFS Greatly Improved Fatigue Symptoms When Treated with Oxygen-Ozone Autohemotherapy" by Tirelli et al.
In this Italian study 200 patients had one or two treatments in which 200 ml of their blood was drawn, treated with Oxygen-Ozone and returned. A significant proportion of the patients scores on a fatigue questionnaire improved from before treatment to one month after treatment. There was no control group, and no long term follow up reported.
Paper here Thread here
bioRxiv Preprint (not yet peer reviewed)
"A Cartography of Differential Gene Methylation in ME/CFS: Different Network Roles in the Protein-Protein Interactions Network Play Different, Biologically Relevant, Roles" by Wilberforce and Riva
Analysis of data aggregated from 3 studies pointed to some hub genes that relate to immune system processes, mitochondrial function and dopamine signalling.
Article here Thread here
Trial By Error
“An Exchange of Letters Concerning Professor Chalder’s Latest Disaster of a Paper”
David Tuller and Brian Hughes have published about their correspondence with an assistant editor at Occupational Medicine concerning a problematic ME/CFS paper by the research team of Trudie Chalder. The assistant editor invited them to submit a letter to the journal while Tuller & Hughes call for retraction of the paper.
Article here Thread here
ME/CFS Skeptic
“2021: Looking back at a year of ME/CFS research”
This blog post gives and overview and summary of the most interesting findings in ME/CFS research in 2021.
Article here Thread here
..............
Other conditions and topics related to ME
IPS 'With Long Covid, there's a minimisation push'
Informative interview with professor Brendan Delany from the Faculty of Medicine at Imperial College London about Long Covid. He warns against treating Covid-19 as an acute condition only, and brings in the history of neglect of complex medical illness after viral illness.
Article here Thread here
The Guardian Don't dismiss Omicron as 'mild'. Take it from a Covid long-hauler by JD Davids
Article here Thread here
...............
S4ME social media: Facebook, Twitter and YouTube
Week beginning 27th December 2021
News, articles and advocacy
Media articles from 2021 A thread has been made with a compilation of media articles from 2021 about ME. The list is based on the news brief and includes 99 articles.
Thread with list here
UK Priority Setting Partnership
A reminder that the next stage is a series of 3 online workshops in March 2022. UK volunteers are invited to apply by 11th January to participate in these to help narrow down to an overall top ten.
Details here Thread here
NICE
Caroline Struthers, Senior EQUATOR Research Fellow at the University of Oxford, has written to Gillian Leng, the outgoing CEO of the National Institute for Health and Care Excellence (NICE) regarding NICE’s collaboration with Cochrane.
Article here Thread here
Dialogues for a Neglected Illness Natalie Boulton has written an article about the final year working on this project. She thanks those who contributed, lists organisations using the videos and encourages people to share the prologue with their doctors.
Article here Dialogues website here Thread here
................
Research
Medicina
"Compression Stockings Improve Cardiac Output and Cerebral Blood Flow during Tilt Testing in ME/CFS Patients: A Randomized Crossover Trial" by van Campen et al.
'In ME/CFS patients with orthostatic intolerance symptoms, cardiac output and CBF are significantly reduced during a tilt test. These abnormalities were present without demonstrable heart rate and blood pressure changes and were ameliorated by the use of compression stockings.'
Paper here Thread here
Journal of Psychiatric Research
"Hair cortisol levels in women with medically unexplained symptoms" by Fischer et al.
Found no significant differences in hair cortisol levels between healthy controls and women grouped together with ME, FM or IBS. Neither childhood trauma nor chronic stress was correlated with hair cortisol.
Paper here Thread here
Journal of Back and Musculoskeletal Rehabilitation
"Assessment of systemic joint laxity in the clinical context: Relevance and replicability of the Beighton score in chronic fatigue" by Bernhoff et al
149 ME/CFS patients attending a clinic in Sweden were assessed for systemic joint laxity. The Beignton scale alone was not found to be a reliable diagnositic measure.
Paper here Thread here
Journal of Clinical Medicine
"Male vs. Female Differences in Responding to Oxygen–Ozone Autohemotherapy (O2-O3-AHT) in Patients with ME/CFS" by Chirumbolo et al
In a second paper on a study we reported last week the authors highlight better outcomes in females than males.
Paper here Thread here
.................
Other conditions and topics related to ME
Solve M.E. Solve Long Covid Initiative
Solve M.E. has announced the launching of Solve Long Covid Initiative.
President and CEO Oved Amitay states in an email update about the launch: "This initiative will allow us to continue to expand capacity and investment in programs such as the You+ME Registry, our federal advocacy, the Ramsay Research Grand Program, and more - strengthening our response to this emerging crisis while ensuring that progress made will benefit everyone with a "long haul" disease".
More information here Thread here
Australia RACGP Guideline: Caring for patients with post–COVID-19 conditions
Outlines the role of GP's in caring for patients including when to refer to specialists. The guidance for post viral fatigue symptoms includes pacing.
Guideline here Thread here
St. George News 'We're not the same people': Southern Utahns, others share struggles with long-haul COVID symptoms
Includes interview with Dr. Brayden Yellman from Salt Lake City's Bateman Horne Center who calls Long Covid a form of ME/CFS and says that fighting back and using physical therapy to get back to normal is the worst thing to do.
Article here Thread here
The Guardian Fatigue is an oppressive cocoon. It has made me seek joy wherever I can
Wise reflections from Dr. Frances Ryan on post viral fatigue and chronic illness: "I have not "overcome" anything, but I am happy and hopeful. I am also absolutely knackered. This is not the narrative society is used to. They don't make Hallmark movies about someone never learning to walk again. But I think it is a much more important story".
Article here Thread here
..................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
Media articles from 2021 A thread has been made with a compilation of media articles from 2021 about ME. The list is based on the news brief and includes 99 articles.
Thread with list here
UK Priority Setting Partnership
A reminder that the next stage is a series of 3 online workshops in March 2022. UK volunteers are invited to apply by 11th January to participate in these to help narrow down to an overall top ten.
Details here Thread here
NICE
Caroline Struthers, Senior EQUATOR Research Fellow at the University of Oxford, has written to Gillian Leng, the outgoing CEO of the National Institute for Health and Care Excellence (NICE) regarding NICE’s collaboration with Cochrane.
Article here Thread here
Dialogues for a Neglected Illness Natalie Boulton has written an article about the final year working on this project. She thanks those who contributed, lists organisations using the videos and encourages people to share the prologue with their doctors.
Article here Dialogues website here Thread here
................
Research
Medicina
"Compression Stockings Improve Cardiac Output and Cerebral Blood Flow during Tilt Testing in ME/CFS Patients: A Randomized Crossover Trial" by van Campen et al.
'In ME/CFS patients with orthostatic intolerance symptoms, cardiac output and CBF are significantly reduced during a tilt test. These abnormalities were present without demonstrable heart rate and blood pressure changes and were ameliorated by the use of compression stockings.'
Paper here Thread here
Journal of Psychiatric Research
"Hair cortisol levels in women with medically unexplained symptoms" by Fischer et al.
Found no significant differences in hair cortisol levels between healthy controls and women grouped together with ME, FM or IBS. Neither childhood trauma nor chronic stress was correlated with hair cortisol.
Paper here Thread here
Journal of Back and Musculoskeletal Rehabilitation
"Assessment of systemic joint laxity in the clinical context: Relevance and replicability of the Beighton score in chronic fatigue" by Bernhoff et al
149 ME/CFS patients attending a clinic in Sweden were assessed for systemic joint laxity. The Beignton scale alone was not found to be a reliable diagnositic measure.
Paper here Thread here
Journal of Clinical Medicine
"Male vs. Female Differences in Responding to Oxygen–Ozone Autohemotherapy (O2-O3-AHT) in Patients with ME/CFS" by Chirumbolo et al
In a second paper on a study we reported last week the authors highlight better outcomes in females than males.
Paper here Thread here
.................
Other conditions and topics related to ME
Solve M.E. Solve Long Covid Initiative
Solve M.E. has announced the launching of Solve Long Covid Initiative.
President and CEO Oved Amitay states in an email update about the launch: "This initiative will allow us to continue to expand capacity and investment in programs such as the You+ME Registry, our federal advocacy, the Ramsay Research Grand Program, and more - strengthening our response to this emerging crisis while ensuring that progress made will benefit everyone with a "long haul" disease".
More information here Thread here
Australia RACGP Guideline: Caring for patients with post–COVID-19 conditions
Outlines the role of GP's in caring for patients including when to refer to specialists. The guidance for post viral fatigue symptoms includes pacing.
Guideline here Thread here
St. George News 'We're not the same people': Southern Utahns, others share struggles with long-haul COVID symptoms
Includes interview with Dr. Brayden Yellman from Salt Lake City's Bateman Horne Center who calls Long Covid a form of ME/CFS and says that fighting back and using physical therapy to get back to normal is the worst thing to do.
Article here Thread here
The Guardian Fatigue is an oppressive cocoon. It has made me seek joy wherever I can
Wise reflections from Dr. Frances Ryan on post viral fatigue and chronic illness: "I have not "overcome" anything, but I am happy and hopeful. I am also absolutely knackered. This is not the narrative society is used to. They don't make Hallmark movies about someone never learning to walk again. But I think it is a much more important story".
Article here Thread here
..................
S4ME social media: Facebook, Twitter and YouTube