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News in Brief - December 2020
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Week beginning 30th November 2020
News, articles and videos
Dialogues for a neglected illness
Three new information films about ME have been added from this excellent project. All three are under the main headline "Patient's Accounts - Symptoms" and the new films are about Cognitive Impairment (duration 18 min), Sleep (duration 12 min) and Orthostatic Intolerance (duration 11 min).
Films here Thread here
Europe
The European Commission answered a formal question by Belgian Member of the European Parliament Pascal Arimont on how it will ensure funding biomedical research into ME/CFS. The Commission responded that its services “are currently working closely with the Member States in order to address under-investigated conditions, of which ME/CFS is a paradigmatic example, in the first work programme of Horizon Europe.”
Response here Thread here
Sweden The Swedish patient organisation RME announced last week on Facebook that Stora Sköndal is closing their popular national ME clinic. This week RME published a press release calling this a catastrophe for ME patients here. RME has also written a letter to Stockholm Regional Council urging them to enable a continuation of the clinic. Stora Sköndal has an update about the news on their website here. The medical newspaper Dagens Medicin has an article here (paywalled).
Thread here
The Faculty Lounge "How Britain's New NICE Guidelines Repudiate the CBT/GET School of ME/CFS Treatment"
A repost of professor Brian Hughes' excellent article on the NICE guideline draft titled "No More Mr NICE Guy..." from Nov. 21 at his blog The Science Bit.
Article here Thread here
NIH Advocacy call The video, transcript, and related information from the NIH ME/CFS Advocacy Call on November 5th are now available on the NIH ME/CFS website.
Link here Thread here
.....................
Research news
The Scientist Blood MicroRNA Patterns Linked to Chronic Fatigue Syndrome.
Thorough article from Katarina Zimmer about Alain Moreau's team's latest publication on a distinct mircoRNA signature in ME patients following a stress test. Also has comments about the study from Mady Hornig and Frances Williams.
Article here Thread here
Lecture with Prof. Jonas Bergquist Lecture in Swedish with updates from the research center for ME/CFS in Uppsala. Provided by the Norwegian ME Association. Duration: 44 min.
Webinar here Thread here
...........
Biomedical research
Pain Medicine
"High Prevalence of Perineural Cysts in Patients with Fibromyalgia and Chronic Fatigue Syndrome" by Hulens et al
Tarlov cysts (TCs) are nerve root dilations resulting from pathologically increased cerebrospinal fluid pressure. These cysts initially affect sensory neurons and axons in dorsal root ganglia and produce sensory symptoms (pain and paresthesia). TCs were observed in 39% of scans examined retrospectively from 197 FM and/or CFS patients. This is three times the rate seen in the general population. The authors conclude 'This observation supports the hypothesis that symptomatic TCs, FM, and CFS may share the same pathophysiological mechanism, i.e., moderately increased cerebrospinal fluid pressure, causing irritation of neurons and axons in dorsal root ganglia.'
Article here Thread here
Network and Systems Medicine
"Informatics Inference of Exercise-Induced Modulation of Brain Pathways Based on Cerebrospinal Fluid Micro-RNAs in ME/CFS" by Narayan, Baraniuk et al.
Five micro-RNA's had higher levels in subjects who rested overnight (nonexercise n=45) compared to subjects who had exercised before their lumbar punctures (n=15). After extensive machine analysis the authors concluded: 'The reduction of this combination of miRNAs in cerebrospinal fluid after exercise suggested upregulation of phosphoinositol signaling pathways and altered adhesion during the post-exertional malaise of ME/CFS'. There was no healthy control group post exercise comparison.
Article here Thread here
..............
Other research
Preprints.org (not yet peer reviewed)
"A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomics Working Group of the European Network on ME/CFS (EUROMENE)" by Pheby et al.
The socioeconomics Working Group of EUROMENE did a systematic review on GPs’ knowledge and understanding of ME/CFS. 33 relevant papers were identified. Quantitative surveys of GPs demonstrated that a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it.
Pre-print here Thread here
...............
Study recruiting
Cardiff University - International online study
"Measuring the Impact of ME/CFS on the Patient and Family using the EQ5D and FROM-16 questionnaire" Dr Nina Muirhead et al.
November 2020 to March 2021. Target 500 participants (must be over 18).
The aim of this project to explore the impact ME/CFS has on people with ME/CFS and their family members. To help with this, two quality of life questionnaires will need to be completed by participants, one by the patient, the other by a family member.
Survey here ME Association article here Thread here
...................
Coming events
DecodeME Webinar On Wednesday 16 December from 5:15-6:15pm.
The Management Team is hosting their second free webinar Q&A, open to all.
Details of how to submit questions and participate here Thread here
...............
Fundraising
UK ME Association Christmas Appeal
Part of the appeal is 'big giving' from 1st to 8th December. Fundraising is for their medical education campaign, particularly important with the new NICE guideline being published next April.
Details here Thread here
.......................
Covid-19 and ME
The Observer "Long Covid: 'is this now me forever?'"
Long Covid sufferer, Eleanor Morgan, writes of her own and others' experiences of long Covid, but adds incorrect statements suggesting psychological factors cause and perpetuate CFS, including childhood trauma and catastrophising.
Dr Charles Shepherd of the ME Association has written to the newspaper asking for immediate correction, providing correct information, and including a link to the new NICE guideline. David Tuller has included Charles Shepherd's letter in his article: "The Observer Slips Up; ME Association Responds", and followed up with: "Thoughts on the Observer, The Guardian, and Paradigm Shift". #MEAction wrote a letter to the editor at the Guardian asking for a correction or removal of the article.
Article here Charles Shepherd's letter here David Tuller's articles here and here #MEAction's letter here
Thread here
CTV News "Struggling with other illness during COVID-19"
Cathleen Dennis got West Nile virus in 2012 and later developed ME. She talks about ME, similarities to post Covid, the lack of knowledge and research on post viral illness and the need for research into Long Covid to dovetail with ME. Duration 4m
Video here Thread here
The Guardian "Is long Covid contagious and can children get it?: your questions answered"
Q&A including two questions about ME. Says Long Covid and CFS have overlapping symptoms, but that fatigue in Long Covid can also have other causes. On whether ME patients are more susceptible to long Covid it says this is not known, but that ME patients should avoid infections in general due to risk of relapse.
Article here Thread here
Elemental "How to Manage Long Covid-19 Symptoms and Fatigue" by Megan E. Doherty.
Advice for Long Covid sufferers based on the experience from the ME/CFS community.
Article here Thread here
Other items of interest
Neuroscience Letters "Neurological issues during COVID-19: An overview" by Avindra Nath et al
Article here Thread here
Cover "Insurers must prepare for 'Long Covid'"
Article here Thread here
ContagionLive interviews Mady Hornig MA, MD
"Studying COVID-19 Long Haulers" here
"Can COVID-19 Morph into Other Serious Health Issues?" here
"Dealing with a COVID-19 Diagnosis" here
Thread here
British Journal of Nursing "Supporting recovery from Covid-19"
Paper here Thread with summary here
MedicalExpress "The COVID 'longhaulers' behind a global patient movement"
Article here Thread here
Press release "Chronic Disease Stakeholders Join SOLVE M.E. in Push for Federally Funded Research into Long COVID"
Press release here Thread here
...............
S4ME social media: Facebook, Twitter and You Tube
News, articles and videos
Dialogues for a neglected illness
Three new information films about ME have been added from this excellent project. All three are under the main headline "Patient's Accounts - Symptoms" and the new films are about Cognitive Impairment (duration 18 min), Sleep (duration 12 min) and Orthostatic Intolerance (duration 11 min).
Films here Thread here
Europe
The European Commission answered a formal question by Belgian Member of the European Parliament Pascal Arimont on how it will ensure funding biomedical research into ME/CFS. The Commission responded that its services “are currently working closely with the Member States in order to address under-investigated conditions, of which ME/CFS is a paradigmatic example, in the first work programme of Horizon Europe.”
Response here Thread here
Sweden The Swedish patient organisation RME announced last week on Facebook that Stora Sköndal is closing their popular national ME clinic. This week RME published a press release calling this a catastrophe for ME patients here. RME has also written a letter to Stockholm Regional Council urging them to enable a continuation of the clinic. Stora Sköndal has an update about the news on their website here. The medical newspaper Dagens Medicin has an article here (paywalled).
Thread here
The Faculty Lounge "How Britain's New NICE Guidelines Repudiate the CBT/GET School of ME/CFS Treatment"
A repost of professor Brian Hughes' excellent article on the NICE guideline draft titled "No More Mr NICE Guy..." from Nov. 21 at his blog The Science Bit.
Article here Thread here
NIH Advocacy call The video, transcript, and related information from the NIH ME/CFS Advocacy Call on November 5th are now available on the NIH ME/CFS website.
Link here Thread here
.....................
Research news
The Scientist Blood MicroRNA Patterns Linked to Chronic Fatigue Syndrome.
Thorough article from Katarina Zimmer about Alain Moreau's team's latest publication on a distinct mircoRNA signature in ME patients following a stress test. Also has comments about the study from Mady Hornig and Frances Williams.
Article here Thread here
Lecture with Prof. Jonas Bergquist Lecture in Swedish with updates from the research center for ME/CFS in Uppsala. Provided by the Norwegian ME Association. Duration: 44 min.
Webinar here Thread here
...........
Biomedical research
Pain Medicine
"High Prevalence of Perineural Cysts in Patients with Fibromyalgia and Chronic Fatigue Syndrome" by Hulens et al
Tarlov cysts (TCs) are nerve root dilations resulting from pathologically increased cerebrospinal fluid pressure. These cysts initially affect sensory neurons and axons in dorsal root ganglia and produce sensory symptoms (pain and paresthesia). TCs were observed in 39% of scans examined retrospectively from 197 FM and/or CFS patients. This is three times the rate seen in the general population. The authors conclude 'This observation supports the hypothesis that symptomatic TCs, FM, and CFS may share the same pathophysiological mechanism, i.e., moderately increased cerebrospinal fluid pressure, causing irritation of neurons and axons in dorsal root ganglia.'
Article here Thread here
Network and Systems Medicine
"Informatics Inference of Exercise-Induced Modulation of Brain Pathways Based on Cerebrospinal Fluid Micro-RNAs in ME/CFS" by Narayan, Baraniuk et al.
Five micro-RNA's had higher levels in subjects who rested overnight (nonexercise n=45) compared to subjects who had exercised before their lumbar punctures (n=15). After extensive machine analysis the authors concluded: 'The reduction of this combination of miRNAs in cerebrospinal fluid after exercise suggested upregulation of phosphoinositol signaling pathways and altered adhesion during the post-exertional malaise of ME/CFS'. There was no healthy control group post exercise comparison.
Article here Thread here
..............
Other research
Preprints.org (not yet peer reviewed)
"A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomics Working Group of the European Network on ME/CFS (EUROMENE)" by Pheby et al.
The socioeconomics Working Group of EUROMENE did a systematic review on GPs’ knowledge and understanding of ME/CFS. 33 relevant papers were identified. Quantitative surveys of GPs demonstrated that a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it.
Pre-print here Thread here
...............
Study recruiting
Cardiff University - International online study
"Measuring the Impact of ME/CFS on the Patient and Family using the EQ5D and FROM-16 questionnaire" Dr Nina Muirhead et al.
November 2020 to March 2021. Target 500 participants (must be over 18).
The aim of this project to explore the impact ME/CFS has on people with ME/CFS and their family members. To help with this, two quality of life questionnaires will need to be completed by participants, one by the patient, the other by a family member.
Survey here ME Association article here Thread here
...................
Coming events
DecodeME Webinar On Wednesday 16 December from 5:15-6:15pm.
The Management Team is hosting their second free webinar Q&A, open to all.
Details of how to submit questions and participate here Thread here
...............
Fundraising
UK ME Association Christmas Appeal
Part of the appeal is 'big giving' from 1st to 8th December. Fundraising is for their medical education campaign, particularly important with the new NICE guideline being published next April.
Details here Thread here
.......................
Covid-19 and ME
The Observer "Long Covid: 'is this now me forever?'"
Long Covid sufferer, Eleanor Morgan, writes of her own and others' experiences of long Covid, but adds incorrect statements suggesting psychological factors cause and perpetuate CFS, including childhood trauma and catastrophising.
Dr Charles Shepherd of the ME Association has written to the newspaper asking for immediate correction, providing correct information, and including a link to the new NICE guideline. David Tuller has included Charles Shepherd's letter in his article: "The Observer Slips Up; ME Association Responds", and followed up with: "Thoughts on the Observer, The Guardian, and Paradigm Shift". #MEAction wrote a letter to the editor at the Guardian asking for a correction or removal of the article.
Article here Charles Shepherd's letter here David Tuller's articles here and here #MEAction's letter here
Thread here
CTV News "Struggling with other illness during COVID-19"
Cathleen Dennis got West Nile virus in 2012 and later developed ME. She talks about ME, similarities to post Covid, the lack of knowledge and research on post viral illness and the need for research into Long Covid to dovetail with ME. Duration 4m
Video here Thread here
The Guardian "Is long Covid contagious and can children get it?: your questions answered"
Q&A including two questions about ME. Says Long Covid and CFS have overlapping symptoms, but that fatigue in Long Covid can also have other causes. On whether ME patients are more susceptible to long Covid it says this is not known, but that ME patients should avoid infections in general due to risk of relapse.
Article here Thread here
Elemental "How to Manage Long Covid-19 Symptoms and Fatigue" by Megan E. Doherty.
Advice for Long Covid sufferers based on the experience from the ME/CFS community.
Article here Thread here
Other items of interest
Neuroscience Letters "Neurological issues during COVID-19: An overview" by Avindra Nath et al
Article here Thread here
Cover "Insurers must prepare for 'Long Covid'"
Article here Thread here
ContagionLive interviews Mady Hornig MA, MD
"Studying COVID-19 Long Haulers" here
"Can COVID-19 Morph into Other Serious Health Issues?" here
"Dealing with a COVID-19 Diagnosis" here
Thread here
British Journal of Nursing "Supporting recovery from Covid-19"
Paper here Thread with summary here
MedicalExpress "The COVID 'longhaulers' behind a global patient movement"
Article here Thread here
Press release "Chronic Disease Stakeholders Join SOLVE M.E. in Push for Federally Funded Research into Long COVID"
Press release here Thread here
...............
S4ME social media: Facebook, Twitter and You Tube
Week beginning 7th December 2020
News, articles and videos
Dialogues for a neglected illness
Two new information films have been added from this excellent project. These are the last films under the headline "Patient's Accounts - Symptoms" and are about "Pain" (Duration 12 minutes) and "Hypersensitivity" (Duration 13 minutes).
Films here Thread here
UK NICE ME/CFS guideline
The following note has been added to the front page of the current guideline:
NICE guideline here Forward ME website here Letter here
#MEAction UK article here Thread here
BJGP "Today's best practice will be rubbished tomorrow"
Retired GP Charles Todd on why and how some treatments are still used even though they are outdated and even can be harmful to patients. Uses ME as an example: "The voice of patients has been crucial in challenging the usefulness of graded exercise therapy and CBT in chronic fatigue syndrome, resulting in these being dropped as recommended treatments by NICE".
Article here Thread here
Sheffield ME & Fibromyalgia Group
Discussion with Dr. David Tuller on the NICE draft guideline for ME.
Video conversation from 7th December. Duration 58 minutes.
Video here Thread here
France Millions Missing France published a letter on ME/CFS and long COVID that was sent to various health authorities in France. The letter includes more than 150 references and has a long list of supporters including Eric Topol and Elisabeth Bik.
Letter here Thread here
New Zealand On Wednesday 9 December, the New Zealand TV1 Breakfast show interviewed Professor Warren Tate and former rugby player Richie Barnett about ME/CFS. On Thursday 10 December the radio show ‘The Panel” on Radio New Zealand also included an interview with Prof. Warren Tate about ME/CFS. Written media in New Zealand picked up on the news story as well, highlighting that ME/CFS is not psychosomatic.
TV interview here Thread with links to other media appearances here
Sweden Karolinska Institutet: Half-time control: Björn Bragée
Zoom meeting titled: Clinical findings in Pain, Exhaustion Syndrome and ME/CFS.
Thread with slides and summary here
Sweden Radio interview with author and ME sufferer Karin Alvtegen who talks about coping with living with ME. Duration: 16 minutes.
Interview here Thread here
Australia ME/CFS South Australia has a new website.
Website here Thread here
....................
Trial by Error by David Tuller
FDA Approves Web-CBT for IBS; GET/CBT as Tomorrow's "Rubbish"
The US Food and Drug Administration is approving a web-based CBT treatment for IBS from Mahana Therapeutics, despite its research results being hyped. Tuller has already done a lot of work on this and expects to do more once Mahana announce the news publicly. Tuller also writes about a recent BJGP article where a CBT/GET approach to CFS is categorised as "rubbished" practice (see item above).
Article here Thread here
GP Group Removes Online GET/CBT Medical Training Program
The PACE-based CFS/ME module for GPs "METRIC" developed by the Royal College of General Practitioners has been taken offline after the new NICE draft. Tuller provides context and asks if this means the main author professor Carolyn Chew-Graham has changed her mind regarding a GET/CBT approach for ME.
Article here Thread here
Letter to Author of Removed GET/CBT Training Program for GPs
Tuller has written an open letter to professor Carolyn Chew-Graham concerning the removal of METRIC (see above item): "In sum, the long-Covid phenomenon appears to have led to a shift in your thinking about the relative value in post-viral syndromes of pacing versus the GET/CBT approach, and now a GET/CBT training module you wrote has been taken down. Given these developments and your prominent role in this domain of medicine, it would be helpful if you could clarify your current position on treatments for ME/CFS."
Letter here Thread here
....................
Research
HRB Open Research
"Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study" by Cullinan et al.
In this study, interviews were conducted with 15 ME/CFS patients and 6 informal carers, to consider costs related to ME/CFS in Ireland. The authors of this research project include several members of the Irish ME/CFS Association such as Science for ME forum member Tom Kindlon.
Article here Thread here
BMJ
"Rapid response to: Long covid: doctors must assess and investigate patients properly" by Muirhead N.
Doctor Nina Muirhead has written a BMJ rapid response where she argues that “Identifying ME/CFS patients amongst, and alongside, those with ‘chronic COVID-19’ is vital.”
Article here Thread here
Clinical Child Psychology and Psychiatry
"Paediatric chronic fatigue syndrome: 25 year perspective" by Loades et al.
In this review, the authors (which include Trudie Chalder and Esther Crawley) look back at 25 years of research on CFS in children and adolescents. They conclude that “compared to 25 years ago, we now understand more about the symptom presentation, behavioural responses and the cognitive and emotional features of CFS in adolescents particularly, although less is known about primary school aged children”.
Article here Thread here
Journal of Psychosomatic Research
“Perfectionism, depression and anxiety in chronic fatigue syndrome: A systematic review” by Wright et al.
In this systematic review that includes seven studies, the authors conclude that maladaptive perfectionism is associated with greater depression in persons with CFS.
Article here Thread here
....................
Advocacy
Petition #HelpHolgerNow - Keep a severe pwME from forced institutionalization
#MEAction is hosting a petition to prevent the severe ME patient Holger from forced institutionalized psychiatric care against his will in Sweden. The appeal is launched by Holger's family.
Petition here Thread here
.....................
Fundraising
CureME Christmas Appeal
London School of Hygiene and Tropical Medicine is asking for donations to enable research into biological effects of Long Covid and any similarities to ME/CFS.
Appeal here Thread here
................
Covid-19 and ME
inews "Long Covid: Your questions answered by an expert studying the condition"
Interview with Professor Frances Williams from Kings College London. ME is also mentioned and Prof. Williams says ".. I think it's very reasonable to expect there to be similarities. There is the same sort of cytokine reactions implicated in both illnesses".
Article here Thread here
Ed Yong, award winning science journalist, held a lecture titled "Our Pandemic Winter: Darkness, Hope, and COVID-19" for Cooper Union where he said that as illnesses like ME, dysautonomia etc have been long dismissed, doctors now have very little to offer long haulers.
Lecture here Thread here
The Lancet "Facing up to long COVID"
Editorial underlining the importance of not repeating mistakes from the past with Long Covid patients but omitting some important details. As reaction the ME Association with Dr. Shepherd stated: Whilst it is good to see The Lancet covering Long COVID in an editorial, it is disappointing to find there is no information on the important clinical and pathological overlaps between ME/CFS and Long COVID that we have been highlighting since May".
Article here Reaction from the ME Association here Thread here
Solve ME/CFS Initiative "COVID Long Haulers and the ME/CFS Community: Joining Forces for Progress"
Webinar from 10th December with Hunter Howard (Global Pandemic Coalition), Karyn Bishof (COVID-19 Longhauler Advocacy Project), Oved Amitay (CEO Solve M.E.) and Emily Taylor (Director of Advocacy, Solve M.E.). Duration 52 minutes.
Webinar here Thread here
........................
S4ME social media: Facebook, Twitter and You Tube
News, articles and videos
Dialogues for a neglected illness
Two new information films have been added from this excellent project. These are the last films under the headline "Patient's Accounts - Symptoms" and are about "Pain" (Duration 12 minutes) and "Hypersensitivity" (Duration 13 minutes).
Films here Thread here
UK NICE ME/CFS guideline
The following note has been added to the front page of the current guideline:
This follows letters from Forward ME and its member organisations asking NICE to follow the Scottish Health Department's example by issuing a warning against GET/CBT treatments for ME; and from #MEAction UK who highlighted the harms from GET.
NICE guideline here Forward ME website here Letter here
#MEAction UK article here Thread here
BJGP "Today's best practice will be rubbished tomorrow"
Retired GP Charles Todd on why and how some treatments are still used even though they are outdated and even can be harmful to patients. Uses ME as an example: "The voice of patients has been crucial in challenging the usefulness of graded exercise therapy and CBT in chronic fatigue syndrome, resulting in these being dropped as recommended treatments by NICE".
Article here Thread here
Sheffield ME & Fibromyalgia Group
Discussion with Dr. David Tuller on the NICE draft guideline for ME.
Video conversation from 7th December. Duration 58 minutes.
Video here Thread here
France Millions Missing France published a letter on ME/CFS and long COVID that was sent to various health authorities in France. The letter includes more than 150 references and has a long list of supporters including Eric Topol and Elisabeth Bik.
Letter here Thread here
New Zealand On Wednesday 9 December, the New Zealand TV1 Breakfast show interviewed Professor Warren Tate and former rugby player Richie Barnett about ME/CFS. On Thursday 10 December the radio show ‘The Panel” on Radio New Zealand also included an interview with Prof. Warren Tate about ME/CFS. Written media in New Zealand picked up on the news story as well, highlighting that ME/CFS is not psychosomatic.
TV interview here Thread with links to other media appearances here
Sweden Karolinska Institutet: Half-time control: Björn Bragée
Zoom meeting titled: Clinical findings in Pain, Exhaustion Syndrome and ME/CFS.
Thread with slides and summary here
Sweden Radio interview with author and ME sufferer Karin Alvtegen who talks about coping with living with ME. Duration: 16 minutes.
Interview here Thread here
Australia ME/CFS South Australia has a new website.
Website here Thread here
....................
Trial by Error by David Tuller
FDA Approves Web-CBT for IBS; GET/CBT as Tomorrow's "Rubbish"
The US Food and Drug Administration is approving a web-based CBT treatment for IBS from Mahana Therapeutics, despite its research results being hyped. Tuller has already done a lot of work on this and expects to do more once Mahana announce the news publicly. Tuller also writes about a recent BJGP article where a CBT/GET approach to CFS is categorised as "rubbished" practice (see item above).
Article here Thread here
GP Group Removes Online GET/CBT Medical Training Program
The PACE-based CFS/ME module for GPs "METRIC" developed by the Royal College of General Practitioners has been taken offline after the new NICE draft. Tuller provides context and asks if this means the main author professor Carolyn Chew-Graham has changed her mind regarding a GET/CBT approach for ME.
Article here Thread here
Letter to Author of Removed GET/CBT Training Program for GPs
Tuller has written an open letter to professor Carolyn Chew-Graham concerning the removal of METRIC (see above item): "In sum, the long-Covid phenomenon appears to have led to a shift in your thinking about the relative value in post-viral syndromes of pacing versus the GET/CBT approach, and now a GET/CBT training module you wrote has been taken down. Given these developments and your prominent role in this domain of medicine, it would be helpful if you could clarify your current position on treatments for ME/CFS."
Letter here Thread here
....................
Research
HRB Open Research
"Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study" by Cullinan et al.
In this study, interviews were conducted with 15 ME/CFS patients and 6 informal carers, to consider costs related to ME/CFS in Ireland. The authors of this research project include several members of the Irish ME/CFS Association such as Science for ME forum member Tom Kindlon.
Article here Thread here
BMJ
"Rapid response to: Long covid: doctors must assess and investigate patients properly" by Muirhead N.
Doctor Nina Muirhead has written a BMJ rapid response where she argues that “Identifying ME/CFS patients amongst, and alongside, those with ‘chronic COVID-19’ is vital.”
Article here Thread here
Clinical Child Psychology and Psychiatry
"Paediatric chronic fatigue syndrome: 25 year perspective" by Loades et al.
In this review, the authors (which include Trudie Chalder and Esther Crawley) look back at 25 years of research on CFS in children and adolescents. They conclude that “compared to 25 years ago, we now understand more about the symptom presentation, behavioural responses and the cognitive and emotional features of CFS in adolescents particularly, although less is known about primary school aged children”.
Article here Thread here
Journal of Psychosomatic Research
“Perfectionism, depression and anxiety in chronic fatigue syndrome: A systematic review” by Wright et al.
In this systematic review that includes seven studies, the authors conclude that maladaptive perfectionism is associated with greater depression in persons with CFS.
Article here Thread here
....................
Advocacy
Petition #HelpHolgerNow - Keep a severe pwME from forced institutionalization
#MEAction is hosting a petition to prevent the severe ME patient Holger from forced institutionalized psychiatric care against his will in Sweden. The appeal is launched by Holger's family.
Petition here Thread here
.....................
Fundraising
CureME Christmas Appeal
London School of Hygiene and Tropical Medicine is asking for donations to enable research into biological effects of Long Covid and any similarities to ME/CFS.
Appeal here Thread here
................
Covid-19 and ME
inews "Long Covid: Your questions answered by an expert studying the condition"
Interview with Professor Frances Williams from Kings College London. ME is also mentioned and Prof. Williams says ".. I think it's very reasonable to expect there to be similarities. There is the same sort of cytokine reactions implicated in both illnesses".
Article here Thread here
Ed Yong, award winning science journalist, held a lecture titled "Our Pandemic Winter: Darkness, Hope, and COVID-19" for Cooper Union where he said that as illnesses like ME, dysautonomia etc have been long dismissed, doctors now have very little to offer long haulers.
Lecture here Thread here
The Lancet "Facing up to long COVID"
Editorial underlining the importance of not repeating mistakes from the past with Long Covid patients but omitting some important details. As reaction the ME Association with Dr. Shepherd stated: Whilst it is good to see The Lancet covering Long COVID in an editorial, it is disappointing to find there is no information on the important clinical and pathological overlaps between ME/CFS and Long COVID that we have been highlighting since May".
Article here Reaction from the ME Association here Thread here
Solve ME/CFS Initiative "COVID Long Haulers and the ME/CFS Community: Joining Forces for Progress"
Webinar from 10th December with Hunter Howard (Global Pandemic Coalition), Karyn Bishof (COVID-19 Longhauler Advocacy Project), Oved Amitay (CEO Solve M.E.) and Emily Taylor (Director of Advocacy, Solve M.E.). Duration 52 minutes.
Webinar here Thread here
........................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 14th December 2020
News, articles and videos
Germany On December 10, the patient organizations Deutsche Gesellschaft für ME/CFS, Fatigatio e.V., Lost Voices Stiftung and MillionsMissing Deutschland had a positive meeting with representatives of the Federal Ministry of Health and the Federal Ministry of Education and Research. A short summary report of the meeting has been made available on social media.
Summary here Thread here
The Netherlands While the Dutch already had a decent report on ME/CFS by their Health Council and a promising research agenda, their clinical guidelines still recommended GET/CBT. "Zorginstituut" has now finally decided to change these. Dutch patient organisations have requested this for a long time. The new NICE guideline will be used as a starting point.
Announcement here Thread here
M.E. Centraal/Finland "Helsinki University Hospital's outpatient clinic for Functional Disorders treats ME/CFS patients"
ME/CFS has been defined as a functional disorder by the Finnish Ministry of Social Affairs and Health. M.E. Centraal provides in this article some examples of the appalling consequences this has had for Finnish ME patients.
Article here Thread here
Science Media Centre - New Zealand "Researchers claim proof chronic fatigue syndrome is a bodily disease - Expert Reaction"
Expert comments on recent studies from Prof. Tate et al on mitochondrial dysfunction and epigenetic similarities in CFS. Comments are by Prof. Tony Hicket, Dr. Carolyn Wilshire, Dr. Lynette Hodges, Dr. Rosamund Vailings and Dr. Hemakumar Devan.
Article here Thread here
Norway Special care service for severe ME patients to open in spring 2021.
The institution Røysumtunet will soon have 12 places available for severe ME patients. This offer has been developed in close cooperation with the Norwegian ME Association. They also hope to be able to facilitate for research projects into ME.
Article here (Norwegian) Article in English provided by EMEA here Thread here
The ME Association "New Leaflet: Pensions- obtaining an ill-health pension, prognosis & permanency in ME/CFS"
Article by Dr. Charles Shepherd from the ME Association with a summary of their new leaflet.
Article here Thread here
US - CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call
The transcript, audio and slideshow from the September 23rd phone meeting are now available on the CDC website.
Transcript/audio/slides here Thread here
Solve ME/CFS Initiative Emily Taylor, Director of Advocacy and Community Relations has written an open letter to the author of an article in Psychology Today which contained outdated and incorrect statements about ME/CFS.
Letter here Thread here
..................
New draft NICE guideline for ME/CFS
BMJ Editorial "Updated NICE Guidelines on chronic fatigue syndrome"
In this guest editorial professors Lynne Turner-Stokes and Derick T Wade oppose the removal of CBT/GET as treatment approaches for ME in the NICE draft guideline. BMJ editorial here
The editorial has received excellent responses from forum members.
Professor Emeritus Jonathan Edwards and expert witness in the guideline process calls the editorial "ill-informed, confused and unhelpful" and explains why here.
Vice-chair of the Belgian ME/CFS Patient organisation 12ME, Michiel Tack, lists and responds to several problematic statements in the editorial here.
Professor in psychology Brian Hughes has written an article about the BMJ editorial on his blog The Science Bit titled "Expert reaction to the BMJ editorial calling for the abandonment of standards" here.
Thread here
Physios for ME "View on NICE Guidelines"
Physios for ME have submitted their response to NICE draft guidance for ME/CFS with key focus on physiotherapy management. Their review document can be read in full at their website, where they've also provided a summary of key impressions and recommendations.
Response here Thread here
Scottish Sunday Express "Invest in research to let us be part of Scotland's future".
Excellent piece by Emma Shorter from #MEAction Scotland drawing parallels between ME and Long Covid, describing the devastating consequences of GET as treatment approach and about NICE's draft guideline with its removal of GET. She calls for a removal of GET in Scottish guidance as well and for more research funding for ME.
Thread with article here
..................
Research news
DecodeME Update from this research project that they will be working with Solve ME to sign up study participants when launching in May. DecodeME will be licensing the You and ME registry digital platform which can be accessed by a computer or smartphone.
More information here Thread here
The University of Edinburgh is advertising a post of Administration Manager for DecodeME. Details here
DecodeME The video of the second webinar by the Decode ME study management team, recorded on Wednesday 16 December, has now been made available on YouTube (one hour). The comments section lists questions asked along with time stamps to allow viewers to skip to a specific section of the video.
Video here Thread here
Solve ME/CFS Initiative The Webinar hosted by Solve ME/CFS Initiative on the NIH’s research on post-exertional malaise is now available on YouTube. Speakers include Barbara Stussman and Brian Walitt.
Thread with video here
..................
Trial by Error by David Tuller
Professors Chalder and Crawley Join Forces to Push CBT for Kids
A critical look at the publication "Paediatric chronic fatigue syndrome: 25 year perspective" by professors Chalder, Crawley et al. Summarised: "..this 25-year review already smells like an antique".
Article here Thread here
...................
Biomedical research
Journal of Translational Medicine "Viruses belonging to Anelloviridae or Circoviridae as a possible cause of chronic fatigue" by Bjørn Grinde
Argues for a further investigation of a possible role of anello- and circoviruses in relation to CFS. "They normally replicate at a low level, but their activity increases in an immune suppressed host; and there are cases where they do reach the brain."
Paper here Thread here
Frontiers in Immunology "Impact of Long-Term Cryopreservation on Blood Immune Cell Markers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Implications for Biomarker Discovery" by Elisabet Gómez-Mora et al
"Our findings show that some of the previously identified immune markers in T and NK cell subsets become unstable after cell biobanking, thus limiting their use in further immunophenotyping studies for ME/CFS".
Paper here Thread here
....................
Other research
Healthcare
“Could Cognitive Behavioural Therapy Be an Effective Treatment for Long COVID and Post COVID-19 Fatigue Syndrome? Lessons from the Qure Study for Q-Fever Fatigue Syndrome” by Vink and Vink-Niese
In this paper, Dutch ME/CFS patient and physician Mark Vink makes a detailed analysis of the Qure study: a trial of doxycycline and cognitive behavioural therapy for patients suffering from Q fever fatigue syndrome. Vink and Vink-Niese conclude that the Qure study suffered from several serious methodological problems such as relying on one subjective primary outcome and ignoring the objective measurements of activity levels.
Article here Thread here
Journal of Translational Medicine
“Potential causal factors of CFS/ME: a concise and systematic scoping review of factors researched” by Muller et al.
This Norwegian research team did a systematic review of primary studies that examined potential causal factors of ME/CFS. 1161 primary studies were included published between January 1979 and June 2019. The most common investigated topics were: immunological (297 studies), psychological (243), infections (198), and neuroendocrinal (198).
Article here Thread here
Journal of the Royal Society of Medicine
“Measuring improvement and deterioration in myalgic encephalomyelitis/chronic fatigue syndrome: the pitfalls of the Chalder Fatigue Questionnaire” by Kirke K.
Science for ME forum member Karen Kirke has published an excellent letter to the editor in response to Adamson et al.’s audit of the South London and Maudsley Persistent Physical Symptoms Research and Treatment Unit.
Letter here Thread here
Journal of Clinical Medicine
“The Prospects of the Two-Day Cardiopulmonary Exercise Test (CPET) in ME/CFS Patients: A Meta-Analysis” by Lim et al.
In this study, Korean researchers from Daejeon University did a systematic review of two-day cardiopulmonary exercise test results in ME/CFS patients compared to controls. 5 studies were included. The difference between patients and controls was highly significant for workload at the ventilatory threshold. The authors conclude that their results “show the potential of the two-day CPET to serve as an objective assessment of PEM in ME/CFS patients.”
Article here Thread here
......................
Covid-19 and ME
NICE "Covid-19 rapid guideline: managing the long-term effects of Covid-19".
This underwhelming guideline has spurred several reactions from the ME field. Covid-19 rapid guideline here.
Dr. Charles Shepherd from the ME Association says to the Guardian: "... it is very disappointing to find that much of what we have learned about symptoms management in ME/CFS, especially the importance of having a period of post-infection convalescence followed by pacing and carefully keeping within an energy envelope, has not been acknowledged or incorporated into this guideline" here.
Action for ME states on their website that they "are concerned to see no mention of the likelihood of developing M.E./CFS following Long Covid" and that "if those experiencing post-exertional malaise, a hallmark symptom of M.E./CFS, are treated following this guideline, they may experience a worsening of symptoms" here.
Thread here
The Atlantic "How Science Beat the Virus" by Ed Yong
Thorough overview article on the scientific approach to Covid-19 where ME is mentioned in section 4 as one disease that likely will benefit from this effort. "It's an opportunity we cannot lose", says Dr. Fauci on research into long-haul symptoms.
Article here Thread here
Other items of interest
healthing.ca "Will COVID unlock the secrets of chronic fatigue?"
Article here Thread here
Vox "The many strange long-term symptoms of Covid-19, explained"
Article here Thread here
Harvard Health Publishing "What are the long-lasting effects of COVID-19?"
Article here Thread here
......................
S4ME social media: Facebook, Twitter and You Tube
News, articles and videos
Germany On December 10, the patient organizations Deutsche Gesellschaft für ME/CFS, Fatigatio e.V., Lost Voices Stiftung and MillionsMissing Deutschland had a positive meeting with representatives of the Federal Ministry of Health and the Federal Ministry of Education and Research. A short summary report of the meeting has been made available on social media.
Summary here Thread here
The Netherlands While the Dutch already had a decent report on ME/CFS by their Health Council and a promising research agenda, their clinical guidelines still recommended GET/CBT. "Zorginstituut" has now finally decided to change these. Dutch patient organisations have requested this for a long time. The new NICE guideline will be used as a starting point.
Announcement here Thread here
M.E. Centraal/Finland "Helsinki University Hospital's outpatient clinic for Functional Disorders treats ME/CFS patients"
ME/CFS has been defined as a functional disorder by the Finnish Ministry of Social Affairs and Health. M.E. Centraal provides in this article some examples of the appalling consequences this has had for Finnish ME patients.
Article here Thread here
Science Media Centre - New Zealand "Researchers claim proof chronic fatigue syndrome is a bodily disease - Expert Reaction"
Expert comments on recent studies from Prof. Tate et al on mitochondrial dysfunction and epigenetic similarities in CFS. Comments are by Prof. Tony Hicket, Dr. Carolyn Wilshire, Dr. Lynette Hodges, Dr. Rosamund Vailings and Dr. Hemakumar Devan.
Article here Thread here
Norway Special care service for severe ME patients to open in spring 2021.
The institution Røysumtunet will soon have 12 places available for severe ME patients. This offer has been developed in close cooperation with the Norwegian ME Association. They also hope to be able to facilitate for research projects into ME.
Article here (Norwegian) Article in English provided by EMEA here Thread here
The ME Association "New Leaflet: Pensions- obtaining an ill-health pension, prognosis & permanency in ME/CFS"
Article by Dr. Charles Shepherd from the ME Association with a summary of their new leaflet.
Article here Thread here
US - CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call
The transcript, audio and slideshow from the September 23rd phone meeting are now available on the CDC website.
Transcript/audio/slides here Thread here
Solve ME/CFS Initiative Emily Taylor, Director of Advocacy and Community Relations has written an open letter to the author of an article in Psychology Today which contained outdated and incorrect statements about ME/CFS.
Letter here Thread here
..................
New draft NICE guideline for ME/CFS
BMJ Editorial "Updated NICE Guidelines on chronic fatigue syndrome"
In this guest editorial professors Lynne Turner-Stokes and Derick T Wade oppose the removal of CBT/GET as treatment approaches for ME in the NICE draft guideline. BMJ editorial here
The editorial has received excellent responses from forum members.
Professor Emeritus Jonathan Edwards and expert witness in the guideline process calls the editorial "ill-informed, confused and unhelpful" and explains why here.
Vice-chair of the Belgian ME/CFS Patient organisation 12ME, Michiel Tack, lists and responds to several problematic statements in the editorial here.
Professor in psychology Brian Hughes has written an article about the BMJ editorial on his blog The Science Bit titled "Expert reaction to the BMJ editorial calling for the abandonment of standards" here.
Thread here
Physios for ME "View on NICE Guidelines"
Physios for ME have submitted their response to NICE draft guidance for ME/CFS with key focus on physiotherapy management. Their review document can be read in full at their website, where they've also provided a summary of key impressions and recommendations.
Response here Thread here
Scottish Sunday Express "Invest in research to let us be part of Scotland's future".
Excellent piece by Emma Shorter from #MEAction Scotland drawing parallels between ME and Long Covid, describing the devastating consequences of GET as treatment approach and about NICE's draft guideline with its removal of GET. She calls for a removal of GET in Scottish guidance as well and for more research funding for ME.
Thread with article here
..................
Research news
DecodeME Update from this research project that they will be working with Solve ME to sign up study participants when launching in May. DecodeME will be licensing the You and ME registry digital platform which can be accessed by a computer or smartphone.
More information here Thread here
The University of Edinburgh is advertising a post of Administration Manager for DecodeME. Details here
DecodeME The video of the second webinar by the Decode ME study management team, recorded on Wednesday 16 December, has now been made available on YouTube (one hour). The comments section lists questions asked along with time stamps to allow viewers to skip to a specific section of the video.
Video here Thread here
Solve ME/CFS Initiative The Webinar hosted by Solve ME/CFS Initiative on the NIH’s research on post-exertional malaise is now available on YouTube. Speakers include Barbara Stussman and Brian Walitt.
Thread with video here
..................
Trial by Error by David Tuller
Professors Chalder and Crawley Join Forces to Push CBT for Kids
A critical look at the publication "Paediatric chronic fatigue syndrome: 25 year perspective" by professors Chalder, Crawley et al. Summarised: "..this 25-year review already smells like an antique".
Article here Thread here
...................
Biomedical research
Journal of Translational Medicine "Viruses belonging to Anelloviridae or Circoviridae as a possible cause of chronic fatigue" by Bjørn Grinde
Argues for a further investigation of a possible role of anello- and circoviruses in relation to CFS. "They normally replicate at a low level, but their activity increases in an immune suppressed host; and there are cases where they do reach the brain."
Paper here Thread here
Frontiers in Immunology "Impact of Long-Term Cryopreservation on Blood Immune Cell Markers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Implications for Biomarker Discovery" by Elisabet Gómez-Mora et al
"Our findings show that some of the previously identified immune markers in T and NK cell subsets become unstable after cell biobanking, thus limiting their use in further immunophenotyping studies for ME/CFS".
Paper here Thread here
....................
Other research
Healthcare
“Could Cognitive Behavioural Therapy Be an Effective Treatment for Long COVID and Post COVID-19 Fatigue Syndrome? Lessons from the Qure Study for Q-Fever Fatigue Syndrome” by Vink and Vink-Niese
In this paper, Dutch ME/CFS patient and physician Mark Vink makes a detailed analysis of the Qure study: a trial of doxycycline and cognitive behavioural therapy for patients suffering from Q fever fatigue syndrome. Vink and Vink-Niese conclude that the Qure study suffered from several serious methodological problems such as relying on one subjective primary outcome and ignoring the objective measurements of activity levels.
Article here Thread here
Journal of Translational Medicine
“Potential causal factors of CFS/ME: a concise and systematic scoping review of factors researched” by Muller et al.
This Norwegian research team did a systematic review of primary studies that examined potential causal factors of ME/CFS. 1161 primary studies were included published between January 1979 and June 2019. The most common investigated topics were: immunological (297 studies), psychological (243), infections (198), and neuroendocrinal (198).
Article here Thread here
Journal of the Royal Society of Medicine
“Measuring improvement and deterioration in myalgic encephalomyelitis/chronic fatigue syndrome: the pitfalls of the Chalder Fatigue Questionnaire” by Kirke K.
Science for ME forum member Karen Kirke has published an excellent letter to the editor in response to Adamson et al.’s audit of the South London and Maudsley Persistent Physical Symptoms Research and Treatment Unit.
Letter here Thread here
Journal of Clinical Medicine
“The Prospects of the Two-Day Cardiopulmonary Exercise Test (CPET) in ME/CFS Patients: A Meta-Analysis” by Lim et al.
In this study, Korean researchers from Daejeon University did a systematic review of two-day cardiopulmonary exercise test results in ME/CFS patients compared to controls. 5 studies were included. The difference between patients and controls was highly significant for workload at the ventilatory threshold. The authors conclude that their results “show the potential of the two-day CPET to serve as an objective assessment of PEM in ME/CFS patients.”
Article here Thread here
......................
Covid-19 and ME
NICE "Covid-19 rapid guideline: managing the long-term effects of Covid-19".
This underwhelming guideline has spurred several reactions from the ME field. Covid-19 rapid guideline here.
Dr. Charles Shepherd from the ME Association says to the Guardian: "... it is very disappointing to find that much of what we have learned about symptoms management in ME/CFS, especially the importance of having a period of post-infection convalescence followed by pacing and carefully keeping within an energy envelope, has not been acknowledged or incorporated into this guideline" here.
Action for ME states on their website that they "are concerned to see no mention of the likelihood of developing M.E./CFS following Long Covid" and that "if those experiencing post-exertional malaise, a hallmark symptom of M.E./CFS, are treated following this guideline, they may experience a worsening of symptoms" here.
Thread here
The Atlantic "How Science Beat the Virus" by Ed Yong
Thorough overview article on the scientific approach to Covid-19 where ME is mentioned in section 4 as one disease that likely will benefit from this effort. "It's an opportunity we cannot lose", says Dr. Fauci on research into long-haul symptoms.
Article here Thread here
Other items of interest
healthing.ca "Will COVID unlock the secrets of chronic fatigue?"
Article here Thread here
Vox "The many strange long-term symptoms of Covid-19, explained"
Article here Thread here
Harvard Health Publishing "What are the long-lasting effects of COVID-19?"
Article here Thread here
......................
S4ME social media: Facebook, Twitter and You Tube
Best wishes for 2021 to all our readers from the news team Week beginning 21st December 2020
UK NICE ME/CFS draft guideline
Submissions to the consultation on the draft guideline
The draft was published on 10th November for a consultation period that ended on 22nd December. ME organisations welcomed the removal of treatments that aim to improve or cure ME/CFS using fixed increment graded exercise or directive CBT. However, there remain significant areas of concern, particularly the continued inclusion of equally poorly evidenced physical activity programs and CBT for psychogical support. Other problems identified by S4ME members included clinical diagnostic criteria and redefinition of terms. After extensive feedback from S4ME members, a small team worked hard to turn the comments into a comprehensive S4ME submission.
Other stakeholders have also consulted their members and made submissions.
Draft NICE ME/CFS guideline here Thread here
S4ME submission PDF here Thread with S4ME submission as posts here
Physios for ME here #MEAction here Action for ME here Thread here
BMJ Editorial
BMJ recently published a controversial guest editorial by professors Lynne Turner-Stokes and Derick T. Wade opposing NICE's removal of CBT/GET as treatment approaches for ME in its guideline draft. The editorial has received several critical rapid responses (see last week's news brief). A new rapid response was submitted by Professor Brian Hughes, Professor Vincent Racaniello and Dr. David Tuller.
Rapid response in BMJ here Thread here
David Tuller has also written the article "BMJ Pushes Back Against New NICE Draft"
Article here Thread here
................
Other news
Sweden The Swedish Brain Foundation (Hjärnfonden) has an interview with Camilla Engstrand who has suffered from ME for five years. The interview is titled: The disease stole my life.
Article here Thread here
...................
Research news
UK - Physios for ME have received ethics committee approval for their study: "Feasibility of investigating oxygen consumption (VO2), heart rate, blood pressure, lactic acid levels and activity levels of people with Myalgic Encephalomyelitis during normal daily activities". The study is planned to start in spring 2021.
Article here Thread here
UK - University of Bristol
“Exploring the Feasibility of ACT for Children and young people with CFS/ME who have been receiving Treatment for more than 12 months or 12 sessions, in preparation for an RCT.” By Crawley et al.
The research team of Professor Esther Crawley at the University of Bristol is recruiting patients for ExFACTR, a study that will explore the use of Acceptance and Commitment Therapy as an alternative treatment for children and young people with ME/CFS.
Announcement here Thread here
....................
Biomedical research
Antioxidants and Redox Signaling
"Are Circulating FGF21 and NT-proBNP promising novel biomarkers in ME/CFS" by Domingo et al.
21 ME/CFS patients (Fukuda criteria) and 20 healthy controls studied. They found significant differences in blood markers related to antioxidant capacity and inflammatory markers. From the abstract: 'These findings lead to the hypothesis that elevated FGF21 and NT-proBNP levels and the association between NT-proBNP and inflammation may be promising novel diagnostic and therapeutic targets in ME/CFS.'
Article here Thread here
.....................
Other research
Medicina
ME/CFS: "Organic Disease or Psychosomatic Illness? A Re-Examination of the Royal Free Epidemic of 1955" by Underhill and Baillod.
The authors, who were Royal Free medical students at the time of the outbreak, interviewed 27 staff 58 years after the outbreak, examined medical records from the time, and the 1970 paper by McEvedy and Beard that claimed the outbreak was epidemic hysteria. Results: 'Twenty-seven ex-Royal Free hospital staff, including six who had developed ME, provided descriptions typical of an infectious illness affecting the lymphatic, muscular, and nervous systems, and were not consistent with epidemic hysteria.'
Article here Thread here
Clinical Infectious Diseases
“Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study” by Jason et al.
In this study the research team of Leonard Jason in Chicago, report that 23% of students who experienced an Epstein-Barr infection met criteria for ME/CFS 6 months later. At baseline, those who developed ME/CFS had more physical symptoms and immune irregularities, but not more psychological symptoms, than those who recovered.
Article here Thread here
......................
Covid-19 and ME
The WSJ "Experimental Drugs Aim to Treat Long-Haul Covid Patients"
Article here Thread here
The Atlantic "The Mysterious Link Between COVID-19 and Sleep"
Article here Thread here
.......................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 28th December 2020
News, videos, articles
MECFS Skeptic 2020: looking back at a year of ME/CFS research
Forum member Michiel Tack has made a comprehensive overview and summary of the most interesting research findings of 2020.
Article here Thread here
Compilation of the biggest media articles about ME from 2020 based on the forum's News in Brief.
Thread here
Solve ME/CFS - Research 1st Newsletter
The Winter 2020 issue of the Research 1st newsletter is available with an update on the You + ME Registry and Biobank.
PDF version here Thread here
JAX ME/CFS CRC Happy New Year from the JAX ME/CFS Team!
A short update from the research team. "We have recently made some exciting changes to our immune profiling panels to add additional analyses, and have begun our immune profiling experiments on our samples. Our collaborations with the Cornell and Columbia ME/CFS Centers are also running at full speed, and we are hoping to begin an additional collaboration soon with the Bateman Horne Center to collect samples from patients who previously had COVID-19, and have since been experiencing ME/CFS-like symptoms, or “long-COVID.”"
Article here Thread here
Ron Davis Two large articles about Ron Davis' research into ME/CFS and the book about his work titled "The Puzzle Solver" which is out this month.
The Scientist - A Geneticist's Quest to Understand His Son's Mysterious Disease
Article here Thread here
Al Jazeera - A Geneticist's biggest challenge: Curing his own son
Article here Thread here
ME/CFS Alert with Llewellyn King and Deborah Waroff - Episode 121: Interview with Dr. Byron Hyde of the Nightingale Research Foundation
"In this interview Dr. Byron Hyde, founder of the Nightingale Research Foundation in Ottawa, Canada, emphasizes the brain and enteroviruses. He also emphasizes his belief that Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are separate issues." Duration 30 minutes.
Thread with video here
A Life Hidden Is There Hope in a New Year?
Wise reflections by Naomi Whittingham on entering 2021.
Article here Thread here
...............
Trial by Error by David Tuller
Psych Issues Do Not Predict ME/CFS, New Chicago Study Shows
On data from the recently published "Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study" by Leonard A. Jason et al. "After reviewing their data on risk factors for developing ME/CFS after a bout of mononucleosis, Jason and his colleagues reached this firm conclusion: “At baseline, those who developed ME/CFS had more physical symptoms and immune irregularities, but not more psychological symptoms, than those who recovered.”"
Article here Thread here
.................
Covid-19 and ME
Medrxiv preprint
"Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact" by Davis et al.
In this international web-based survey of suspected and confirmed COVID-19 cases, 3,762 respondents from 56 countries participated. Among the many symptoms mentioned, fatigue, post-exertional malaise and cognitive dysfunction were the most frequently reported after 6 months.
Article here Thread here
CDC Broad Agency Announcement concerning Covid-19 also mentions research into ME/CFS
Announcement here Thread here
Fox13News "Covid-19 Long Haulers search for answers while doctors do the same"
Includes interviews with Drs Lucinda Bateman and Braden Yellman from Bateman Horne Center who say this is real and an opportunity to study patients with post-viral illnesses beyond just Covid-19.
Article here Thread here
The BMJ "NICE guideline on Long Covid fails to acknowledge important clinical and pathological overlaps with ME/CFS"
Rapid response by Dr. Charles Shepherd from the ME Association to a recent BMJ editorial about the NICE guideline on post-covid syndrome. "The NICE guideline contains no specific guidance on the management of any of the common symptoms of long covid. This is a serious omission which requires urgent attention"
Response here Thread here
The Guardian "I'm a consultant in infectious diseases. 'Long Covid' is anything but a mild illness".
Opinion piece by Joanna Herman about her experience with Long Covid. It also had some misunderstandings concerning Long Covid comparison with "straight forward" post viral syndrome. The opinion piece received two replies pinpointing similarities between Long Covid and ME/CFS.
Opinion piece here Replies here Thread here
#MEaction "NIH Hosts Workshop on Long COVID - Read the Summary"
The #MEAction website has posted an overview of the 2-day NIH workshop on Long COVID that was held on December 3-4, 2020.
Article here Thread here
BBC Covid-19: The similarities between 'long Covid' and ME
Quotes from ME sufferer Gary Campion, advocate Joan McParland and Dr. Charles Shepherd as well as OT Lorraine Henry on similarities. Article also mentions the removal from NICE of CBT/GET as treatment approach.
Article here Thread here
Other items of interest
WLRN "Long Haul Journeys With COVID19: South Florida Research Hopes To Track Lingering Symptoms" (includes interview with Dr. Nancy Klimas)
Article here Thread here
The Atlantic "Where Year Two of the Pandemic Will Take Us" by Ed Yong
Article here Thread here
Scientific American "The Problem of 'Long Haul' COVID"
Article here Thread here
....................
S4ME social media: Facebook, Twitter and You Tube
News, videos, articles
MECFS Skeptic 2020: looking back at a year of ME/CFS research
Forum member Michiel Tack has made a comprehensive overview and summary of the most interesting research findings of 2020.
Article here Thread here
Compilation of the biggest media articles about ME from 2020 based on the forum's News in Brief.
Thread here
Solve ME/CFS - Research 1st Newsletter
The Winter 2020 issue of the Research 1st newsletter is available with an update on the You + ME Registry and Biobank.
PDF version here Thread here
JAX ME/CFS CRC Happy New Year from the JAX ME/CFS Team!
A short update from the research team. "We have recently made some exciting changes to our immune profiling panels to add additional analyses, and have begun our immune profiling experiments on our samples. Our collaborations with the Cornell and Columbia ME/CFS Centers are also running at full speed, and we are hoping to begin an additional collaboration soon with the Bateman Horne Center to collect samples from patients who previously had COVID-19, and have since been experiencing ME/CFS-like symptoms, or “long-COVID.”"
Article here Thread here
Ron Davis Two large articles about Ron Davis' research into ME/CFS and the book about his work titled "The Puzzle Solver" which is out this month.
The Scientist - A Geneticist's Quest to Understand His Son's Mysterious Disease
Article here Thread here
Al Jazeera - A Geneticist's biggest challenge: Curing his own son
Article here Thread here
ME/CFS Alert with Llewellyn King and Deborah Waroff - Episode 121: Interview with Dr. Byron Hyde of the Nightingale Research Foundation
"In this interview Dr. Byron Hyde, founder of the Nightingale Research Foundation in Ottawa, Canada, emphasizes the brain and enteroviruses. He also emphasizes his belief that Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are separate issues." Duration 30 minutes.
Thread with video here
A Life Hidden Is There Hope in a New Year?
Wise reflections by Naomi Whittingham on entering 2021.
Article here Thread here
...............
Trial by Error by David Tuller
Psych Issues Do Not Predict ME/CFS, New Chicago Study Shows
On data from the recently published "Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study" by Leonard A. Jason et al. "After reviewing their data on risk factors for developing ME/CFS after a bout of mononucleosis, Jason and his colleagues reached this firm conclusion: “At baseline, those who developed ME/CFS had more physical symptoms and immune irregularities, but not more psychological symptoms, than those who recovered.”"
Article here Thread here
.................
Covid-19 and ME
Medrxiv preprint
"Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact" by Davis et al.
In this international web-based survey of suspected and confirmed COVID-19 cases, 3,762 respondents from 56 countries participated. Among the many symptoms mentioned, fatigue, post-exertional malaise and cognitive dysfunction were the most frequently reported after 6 months.
Article here Thread here
CDC Broad Agency Announcement concerning Covid-19 also mentions research into ME/CFS
Announcement here Thread here
Fox13News "Covid-19 Long Haulers search for answers while doctors do the same"
Includes interviews with Drs Lucinda Bateman and Braden Yellman from Bateman Horne Center who say this is real and an opportunity to study patients with post-viral illnesses beyond just Covid-19.
Article here Thread here
The BMJ "NICE guideline on Long Covid fails to acknowledge important clinical and pathological overlaps with ME/CFS"
Rapid response by Dr. Charles Shepherd from the ME Association to a recent BMJ editorial about the NICE guideline on post-covid syndrome. "The NICE guideline contains no specific guidance on the management of any of the common symptoms of long covid. This is a serious omission which requires urgent attention"
Response here Thread here
The Guardian "I'm a consultant in infectious diseases. 'Long Covid' is anything but a mild illness".
Opinion piece by Joanna Herman about her experience with Long Covid. It also had some misunderstandings concerning Long Covid comparison with "straight forward" post viral syndrome. The opinion piece received two replies pinpointing similarities between Long Covid and ME/CFS.
Opinion piece here Replies here Thread here
#MEaction "NIH Hosts Workshop on Long COVID - Read the Summary"
The #MEAction website has posted an overview of the 2-day NIH workshop on Long COVID that was held on December 3-4, 2020.
Article here Thread here
BBC Covid-19: The similarities between 'long Covid' and ME
Quotes from ME sufferer Gary Campion, advocate Joan McParland and Dr. Charles Shepherd as well as OT Lorraine Henry on similarities. Article also mentions the removal from NICE of CBT/GET as treatment approach.
Article here Thread here
Other items of interest
WLRN "Long Haul Journeys With COVID19: South Florida Research Hopes To Track Lingering Symptoms" (includes interview with Dr. Nancy Klimas)
Article here Thread here
The Atlantic "Where Year Two of the Pandemic Will Take Us" by Ed Yong
Article here Thread here
Scientific American "The Problem of 'Long Haul' COVID"
Article here Thread here
....................
S4ME social media: Facebook, Twitter and You Tube