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News in Brief - May 2020
- Thread starter Trish
- Start date
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- news news in brief
Week beginning 4th May 2020
News
USA - Solve ME/CFS announced that they've sent out messages to the 3000+ people who pre-registered for their "You + M.E. Registry and Biobank" - be sure to check your email if you were on their list.
Registry website here Thread here
...................
Covid-19 and ME
University of Leicester, UK
"Patients at higher risk of developing ME after COVID-19 diagnosis" by Dr Nicola Clague-Baker, Associate Professor in the School of Allied Health Professions.
An excellent short article explaining ME, its symptoms including PEM, severity levels, and the need to avoid triggering PEM. The article is addressed particularly to professionals including physiotherapists working on rehabilitation of patients who remain sick after Covid-19 infection and who may develop ME.
Article here Thread here
Canada Radio-Canada interviewed Dr Alain Moreau about the OMF study looking for possible ME/CFS cases in post-COVID19 patients. The interview is in French but the forum post includes a link to an English version by Google translate.
Interview here Thread here
Germany Article from Berliner Zeitung about ME providing a summary of recent research and warning that the corona virus might be a trigger for the disease.
Article here (in German) Thread here
Science "Fact-checking Judy Mikovits, the controversial virologist attacking Anthony Fauci in a viral conspiracy video" by Enserink and Cohen.
Discredited scientist Mikovits, whose flawed work on XMRV virus and CFS was retracted, is now spreading fake news and nonsensical conspiracy theories about COVID-19 in a professional looking video widely shared on social media. This article demolishes some of her claims.
Article here Thread here
Norway 19 year old Alexandra, who has suffered from ME since she was 6, asks in an opinion piece the Minister of Health why he remembers healthy adolescents in the corona crisis, but seems to have forgotten about those with chronic illnesses.
Thread with link here
Australia "Thirty-five-year-old living in aged care reveals what life is like inside during this pandemic".
Article from SBS Insight about severe ME patient Ketra having to spend lock down in a care facility for elderly.
Article here Thread here
....................
Trial by Error by David Tuller
Merck Manual Still Disseminates GET/CBT Advice
Tuller writes about the online US medical guide Merck Manual's presentation of ME, which is outdated and endorses a GET/CBT approach. "That Merck believes these pages represent an accurate and medically up-to-date distillation of the state of play in this domain is disturbing".
Article here Thread here
My Letter to IBS Study's Corresponding Author
Letter here Thread here
Valerie Eliot Smith on COVID-19, ME and Legal Repercussions
A reblog of Valerie Eliot Smith (see item below)
....................
Articles, videos, other news
Blog by Valerie Eliot Smith "COVID-19, NICE and ME: towards litigation?"
The article examines the possibility of private litigation by ME patients harmed by Graded Exercise Therapy, placing this in the context of the delay in the NICE guideline update, the survey data submitted to NICE giving evidence of harm from GET, and the potential for GET being recommended to people who might develop ME following COVID-19.
Article here Thread here
Broken Battery "The PACE trial - Part 3: Criteria"
Another excellent video by forum member Adam pwme on how different diagnostic criteria for ME leads to inconsistent research results and harmful treatments. Duration: 4 minutes.
Thread with video here
ME International "Myalgic Encephalomyelitis - Understanding Diagnosis"
Information video about ME from the Colorado based organisation ME International. Includes history of ME, lived experience, walkthrough of diagnostic criteria and more. The video promotes the adoption of the International Consensus Criteria for ME (ICC) and the IC Primer. Duration: 20 min.
Thread with link to video here
USA The Washington Post has published an article written by the daughter of an ME patient in their parenting section: "My mom is limited by a disability, but she still shows up in all the ways that matter".
Article here Thread here
..................
Biomedical research
Frontiers in Pediatrics - Paediatric Neurology (Provisionally accepted)
"Review of the Quality Control Checks Performed by Current Genome-Wide and Targeted-Genome Association Studies on ME/CFS" by Sepulveda et al
A review of 4 GWAS and 2 TGAS from the last decade showed they had inconsistent findings. The lack of a biomarker can lead to some misclassification of patients. The authors recommend close collaboration between ME researchers and geneticists, high standards of quality control and open data sharing.
Article here Thread here
Research Gate preprint (not yet peer reviewed)
"Mitochondria and Immunity in Chronic Fatigue Syndrome" by Anderson & Maes.
A review and hypothesis article that looks at a wide range of biomedical CFS research. The abstract concludes with a hypothesis: 'The gut and immune cell mitochondria are proposed to be two important hubs that interact with the circadian rhythm in driving ME/CFS pathophysiology.'
Article here Thread here
...................
Research news and commentary
Planned research
"Epigenetics of Post-exertional Malaise in Patients With ME/CFS"
Vrije Universiteit Brussels, start date October 2020.
A randomised controlled trial with cross-over design. 80 patients with ME/CFS and 25 matched healthy controls. 'The primary aim is to assess genetic and epigenetic mechanisms of BDNF, COMT and HDAC genes in response to exercise and the stress task.'
Information here Thread here
USA: Brigham Women's Hospital
"Grand Rounds: Pathophysiology of Exercise Intolerance in Chronic Fatigue Syndrome" by David Systrom, MD
A video is available of this session held on May 5th. Duration 1:03 hours
Dr Systrom describes his work with invasive CPET, and his use of mestonin combined with GET with ME/CFS patients. He describes briefly his new clinical trial. A patient also describes her experience with this treatment.
Video here Thread here
The Kavli Trust "Promising results from trial of cancer drug in ME/CFS"
Article about the recent clinical study on the cancer drug cyclophosphamide from the ME/CFS research group at Haukeland University Hospital led by Øystein Fluge and Olav Mella. The Kavli Trust has supported their research into ME for several years.
Article here Thread here
Norway Opinions piece in a medical newspaper by ME patient Nina E. Steinkopf. She writes about several weaknesses in a recent trial on music therapy/CBT as treatment approach. She also warns against a planned trial on an alternative method as ME treatment and calls for research funds being prioritised for medical research.
Thread with translation here
...................
Advocacy
UK ME Association ME awareness month May 2020
Thread here
[Edit 11th May: The information posted here has been deleted. The MEA information from 2019 was posted in error].
....................
S4ME social media: Facebook, Twitter and You Tube
News
USA - Solve ME/CFS announced that they've sent out messages to the 3000+ people who pre-registered for their "You + M.E. Registry and Biobank" - be sure to check your email if you were on their list.
Registry website here Thread here
...................
Covid-19 and ME
University of Leicester, UK
"Patients at higher risk of developing ME after COVID-19 diagnosis" by Dr Nicola Clague-Baker, Associate Professor in the School of Allied Health Professions.
An excellent short article explaining ME, its symptoms including PEM, severity levels, and the need to avoid triggering PEM. The article is addressed particularly to professionals including physiotherapists working on rehabilitation of patients who remain sick after Covid-19 infection and who may develop ME.
Article here Thread here
Canada Radio-Canada interviewed Dr Alain Moreau about the OMF study looking for possible ME/CFS cases in post-COVID19 patients. The interview is in French but the forum post includes a link to an English version by Google translate.
Interview here Thread here
Germany Article from Berliner Zeitung about ME providing a summary of recent research and warning that the corona virus might be a trigger for the disease.
Article here (in German) Thread here
Science "Fact-checking Judy Mikovits, the controversial virologist attacking Anthony Fauci in a viral conspiracy video" by Enserink and Cohen.
Discredited scientist Mikovits, whose flawed work on XMRV virus and CFS was retracted, is now spreading fake news and nonsensical conspiracy theories about COVID-19 in a professional looking video widely shared on social media. This article demolishes some of her claims.
Article here Thread here
Norway 19 year old Alexandra, who has suffered from ME since she was 6, asks in an opinion piece the Minister of Health why he remembers healthy adolescents in the corona crisis, but seems to have forgotten about those with chronic illnesses.
Thread with link here
Australia "Thirty-five-year-old living in aged care reveals what life is like inside during this pandemic".
Article from SBS Insight about severe ME patient Ketra having to spend lock down in a care facility for elderly.
Article here Thread here
....................
Trial by Error by David Tuller
Merck Manual Still Disseminates GET/CBT Advice
Tuller writes about the online US medical guide Merck Manual's presentation of ME, which is outdated and endorses a GET/CBT approach. "That Merck believes these pages represent an accurate and medically up-to-date distillation of the state of play in this domain is disturbing".
Article here Thread here
My Letter to IBS Study's Corresponding Author
Letter here Thread here
Valerie Eliot Smith on COVID-19, ME and Legal Repercussions
A reblog of Valerie Eliot Smith (see item below)
....................
Articles, videos, other news
Blog by Valerie Eliot Smith "COVID-19, NICE and ME: towards litigation?"
The article examines the possibility of private litigation by ME patients harmed by Graded Exercise Therapy, placing this in the context of the delay in the NICE guideline update, the survey data submitted to NICE giving evidence of harm from GET, and the potential for GET being recommended to people who might develop ME following COVID-19.
Article here Thread here
Broken Battery "The PACE trial - Part 3: Criteria"
Another excellent video by forum member Adam pwme on how different diagnostic criteria for ME leads to inconsistent research results and harmful treatments. Duration: 4 minutes.
Thread with video here
ME International "Myalgic Encephalomyelitis - Understanding Diagnosis"
Information video about ME from the Colorado based organisation ME International. Includes history of ME, lived experience, walkthrough of diagnostic criteria and more. The video promotes the adoption of the International Consensus Criteria for ME (ICC) and the IC Primer. Duration: 20 min.
Thread with link to video here
USA The Washington Post has published an article written by the daughter of an ME patient in their parenting section: "My mom is limited by a disability, but she still shows up in all the ways that matter".
Article here Thread here
..................
Biomedical research
Frontiers in Pediatrics - Paediatric Neurology (Provisionally accepted)
"Review of the Quality Control Checks Performed by Current Genome-Wide and Targeted-Genome Association Studies on ME/CFS" by Sepulveda et al
A review of 4 GWAS and 2 TGAS from the last decade showed they had inconsistent findings. The lack of a biomarker can lead to some misclassification of patients. The authors recommend close collaboration between ME researchers and geneticists, high standards of quality control and open data sharing.
Article here Thread here
Research Gate preprint (not yet peer reviewed)
"Mitochondria and Immunity in Chronic Fatigue Syndrome" by Anderson & Maes.
A review and hypothesis article that looks at a wide range of biomedical CFS research. The abstract concludes with a hypothesis: 'The gut and immune cell mitochondria are proposed to be two important hubs that interact with the circadian rhythm in driving ME/CFS pathophysiology.'
Article here Thread here
...................
Research news and commentary
Planned research
"Epigenetics of Post-exertional Malaise in Patients With ME/CFS"
Vrije Universiteit Brussels, start date October 2020.
A randomised controlled trial with cross-over design. 80 patients with ME/CFS and 25 matched healthy controls. 'The primary aim is to assess genetic and epigenetic mechanisms of BDNF, COMT and HDAC genes in response to exercise and the stress task.'
Information here Thread here
USA: Brigham Women's Hospital
"Grand Rounds: Pathophysiology of Exercise Intolerance in Chronic Fatigue Syndrome" by David Systrom, MD
A video is available of this session held on May 5th. Duration 1:03 hours
Dr Systrom describes his work with invasive CPET, and his use of mestonin combined with GET with ME/CFS patients. He describes briefly his new clinical trial. A patient also describes her experience with this treatment.
Video here Thread here
The Kavli Trust "Promising results from trial of cancer drug in ME/CFS"
Article about the recent clinical study on the cancer drug cyclophosphamide from the ME/CFS research group at Haukeland University Hospital led by Øystein Fluge and Olav Mella. The Kavli Trust has supported their research into ME for several years.
Article here Thread here
Norway Opinions piece in a medical newspaper by ME patient Nina E. Steinkopf. She writes about several weaknesses in a recent trial on music therapy/CBT as treatment approach. She also warns against a planned trial on an alternative method as ME treatment and calls for research funds being prioritised for medical research.
Thread with translation here
...................
Advocacy
UK ME Association ME awareness month May 2020
Thread here
[Edit 11th May: The information posted here has been deleted. The MEA information from 2019 was posted in error].
....................
S4ME social media: Facebook, Twitter and You Tube
Last edited:
Week beginning 11th May 2020
ME Awareness
ME Awareness Day/Week/Month and #MillionsMissing May 2020
A big thank you to everyone who contributed and engaged with initiatives and events for the international awareness campaign. Many of the initiatives from 12th of May were shared on the forum, collected in thread here and some listed below.
#MEAction UK - #MillionsMissing 2020
Recording of event with speeches from patients, carers, doctors, researchers and Carol Monaghan MP. Duration 1 hour 54 minutes.
Post with recording here
Campaign film "I got a virus, I didn't die, but I never recovered"
Powerful film from "MEAction UK and #MEAction Scotland with contributions from several ME patients as well as prof. Chris Ponting and dr. Nina Muirhead. Duration: 7 min.
Thread with film here
CDC "ME/CFS International Awareness Day"
Information about the awareness day, its history and what health care providers, families and schools can do to support.
Website here Thread here
See ME song and video from Belgian artist Robin De Man and son Seppe. Post here
Sweden press release from patient organisation RME about launching an information campaign on PEM. Post here
The Florence Nightingale Museum joined forces with MEAction. Post here
M.E. Trust Fundraising by a marathon reading from Caroline Kingdon from the London School of Hygiene and Tropical Medicine. Post here
MECFS Canterbury Campaign film "Years in Lockdown". Post here
Norway Donation to ME research from the Norwegian ME Association. Post here
Australia Griffith Bridge and Ian O'Connor Building light up blue. Post here
Austria Mirabell Palace light up blue. Post here
EMEC Open letter by Evelien Van Den Brink asking the European parliament for sufficient funding for research into ME. Post here
France music video and summary of events. Post here
Germany summary of events and initiatives. Post here
Awareness song with a humorous take by Sarah Hunter. Post here
.....................
Trial by Error by David Tuller
Today is May 12th and Everyone's Missing
About how this year had a different marking of the ME Awareness Day, but also offers a hope that research into "the long-term sequelae of COVID-19 can help shed light on the mechanisms behind the development of chronic disease after an infectious illness"
Article here Thread here
More on that Norwegian CBT/Music Therapy Study
David Tuller walks us through a recent study on CBT and Music Therapy as treatment approach to CFS. The researchers concluded the treatment as feasible and acceptable, despite having results showing poorer performance from the intervention group than the control group.
Article here Thread here
.......................
News, articles, videos
Germany. Article on ME/CFS in the newspaper Berliner Zeitung titled “Corona könnte krankhaft - chronisches Erschöpfungssyndrom auslösen“. The article discusses the research of Carmen Scheibenbogen and Bhupesh Prusty. It also mentions the campaign by Millions Missing Germany to send postcards to Federal Minister of Health Jens Spahn, asking him to take action on ME/CFS.
Article here Thread here
Cochrane. Hilda Bastian, head of the independent advisory group, has started making a list of accessible published commentaries and critiques of the Cochrane review on exercise therapy for CFS.
Tweet here Thread here
Scotland Coverage from The Times on a campaign from Scottish ME patients urging ministers to withdraw the harmful treatment approach graded exercise therapy.
Article here (paywalled) Thread here
UK - Letter to NICE Olivia Blake, MP, member of the All Party Parliamentary Group on ME has written to NICE about the indefinitely delayed ME/CFS review. 'I hope you would agree that the risks posed to both current and future patients by the continued usage of graded exercise therapy and other harmful treatments shows an urgent need to resume rewriting NICE guidance for ME treatment, particularly as it is becoming clear Covid-19 will lead to many more people developing ME.'
Thread with letter here
A life Hidden This is love: An Appeal to Musicians
Naomi Whittingham writes about Kara who is seriously ill with ME and in an extremely fragile situation. Kara is also a gifted songwriter and has recorded vocals from her bed. She is asking for help from musicians to assist with fulfilling her music project.
BBC also wrote an article about Kara and Naomi's appeal.
Article here BBC article here Thread here
CDC "CDC Team Takes ME/CFS Around The World"
Head of the ME/CFS program Dr. Elisabeth Unger describes how her team impacts ME/CFS internationally and says: By incorporating the input of patients and healthcare providers, we hope to show that learning works best when everyone works together.
Article here Thread here
PEM information film Subtitles in Czech, Danish, Dutch, Finnish, French, German and Swedish added to short film about PEM from the Norwegian ME Association - Rogaland County.
Thread with film here
OMF Actress Jennie Jacques is OMF's newest Celebrity Ambassador.
In the announcement from OMF Jennie Jacques expresses a keen interest in the science behind ME/CFS and that she "hope to come up with creative ways to engage with researchers and ultimately use my platform to raise awareness and further educate people".
Announcement here Thread here
.......................
Covid-19 and ME
Center For Solutions For ME/CFS Will there be a Post-Covid-19 of ME/CFS?
In this article Dr. Anthony Komaroff from Harvard Medical School looks at previous epidemics and current research and concludes it is "entirely plausible that some cases of ME/CFS will develop in people who get COVID-19".
Article here Thread here
Physios for ME "Post Covid-19 Rehabilitation"
An information sheet to help physios start thinking about PVFS and ME if involved in post COVID rehabilitation. The sheet alerts physiotherapists to the possibility of post viral fatigue in Covid-19 patients and warns of the dangers of exercise based standard rehabilitation.
Document here Thread here
Huffington Post "Coronavirus Is Leaving People With Serious Fatigue"
Interviews with professor Paul Garner from Liverpool School of Tropical Medicine and dr. Charles Shepherd from the ME Association on Covid-19, post viral fatigue and activity management.
Article here Thread here
Iceland Article by the Morgunbladid where the patient organisation ME-félags ísland expresses concern of a possible increase of ME patients following the Corona virus. They also say the medical assessment for ME needs to be improved in order to provide the best treatments for the patients.
Article here (Icelandic) Thread here
.......................
Useful Resources
UK: Continuing Professional Development (CPD) Module on ME/CFS by Dr Nina Muirhead
Excellent free resource for medical students and professionals that includes diagnosis, post exertional malaise, the dangers of prescribing exercise, and care needs of patients. Participants learn through case studies. The module was developed by the CMRC Medical Education Group led by Dr Nina Muirhead, and leads to the award of a certificate.
Module here MEA article here
Introductory article by Dr Muirhead here Thread here
Australia and New Zealand: Continuing Medical Education Module on ME/CFS
"Busting the myths and redefining ME/CFS"
'This program was developed by ThinkGP in collaboration with Emerge Australia Inc and has been endorsed as part of the The Royal New Zealand College of General Practitioners (RNZCGP) continuing medical education program (CME).'
Module here ME Awareness NZ article here Thread here
..............................
Research news
UK: ME/CFS Biomedical Partnership reports that the decision on the application for funding of the planned Genome Wide Association Study (GWAS) has been delayed by the Covid-19 pandemic.
Thread here
UK Physios for ME, a group of physiotherapists in the United Kingdom with a special interest in ME has announced that they have secured funding for a new research project. The study is called “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 ME association provided funding for the study.
Article here Thread here
..........................
Research and review
Journal of Translational Medicine
A systematic review of metabolomic dysregulation in CFS/ME/SEID by Huth et al.
The Australian research team of Donald Staines and Sonya Marshall‑Gradisnik did a systematic review on metabolomic dysregulation in ME/CFS. 11 observational case-control studies were found. The authors conclude that “based on the data currently available, metabolomics does not contribute to the pathogenesis of CFS/ME/SEID.”
Article here Thread here
Journal of Psychosomatic Research
"The role of partners' fatigue and the patient-partner relationship in the outcome of cognitive behavioural therapy for chronic fatigue syndrome" by Braamse et al.
This Dutch research team reports that partners of patients with CFS have lower fatigue than controls and that fatigue in partners is not related to chronic fatigue patients' fatigue. After controlling for patients' baseline fatigue severity and functional impairment, only relationship dissatisfaction as reported by (female) patients significantly predicted worse treatment outcome.
Article here Thread here
Pilot and Feasibility Studies
"The feasibility and acceptability of an early intervention in primary care to prevent chronic fatigue syndrome (CFS) in adults: randomised controlled trial." By O’Dowd et al.
The research team of Prof. Esther Crawley has conducted a feasibility randomized trial to test an early intervention for fatigue of 1 to 4 months duration in primary care. The authors conclude that the trial was not feasible. There were problems with recruitment and some participants found the intervention problematic and did not relate to the therapeutic model.
Article here Thread here
.......................
Advocacy
USA The Solve ME/CFS group is working with Senator Ed Markey to get ME/CFS research funds included in the next COVID-19 package. They are working with Markey's staff now to finalize a Senate leadership letter. There will be a request soon (within a week?) asking folks to contact their senators to ask for their support.
Thread here
........................
Job vacancy
Sweden The ME/CFS Center at Stora Sköndal is hiring a doctor with specialist training in general medicine, neurology, immunology, rheumatology or pain.
Notice here (in Swedish) Thread here
......................
S4ME social media: Facebook, Twitter and You Tube
ME Awareness
ME Awareness Day/Week/Month and #MillionsMissing May 2020
A big thank you to everyone who contributed and engaged with initiatives and events for the international awareness campaign. Many of the initiatives from 12th of May were shared on the forum, collected in thread here and some listed below.
#MEAction UK - #MillionsMissing 2020
Recording of event with speeches from patients, carers, doctors, researchers and Carol Monaghan MP. Duration 1 hour 54 minutes.
Post with recording here
Campaign film "I got a virus, I didn't die, but I never recovered"
Powerful film from "MEAction UK and #MEAction Scotland with contributions from several ME patients as well as prof. Chris Ponting and dr. Nina Muirhead. Duration: 7 min.
Thread with film here
CDC "ME/CFS International Awareness Day"
Information about the awareness day, its history and what health care providers, families and schools can do to support.
Website here Thread here
See ME song and video from Belgian artist Robin De Man and son Seppe. Post here
Sweden press release from patient organisation RME about launching an information campaign on PEM. Post here
The Florence Nightingale Museum joined forces with MEAction. Post here
M.E. Trust Fundraising by a marathon reading from Caroline Kingdon from the London School of Hygiene and Tropical Medicine. Post here
MECFS Canterbury Campaign film "Years in Lockdown". Post here
Norway Donation to ME research from the Norwegian ME Association. Post here
Australia Griffith Bridge and Ian O'Connor Building light up blue. Post here
Austria Mirabell Palace light up blue. Post here
EMEC Open letter by Evelien Van Den Brink asking the European parliament for sufficient funding for research into ME. Post here
France music video and summary of events. Post here
Germany summary of events and initiatives. Post here
Awareness song with a humorous take by Sarah Hunter. Post here
.....................
Trial by Error by David Tuller
Today is May 12th and Everyone's Missing
About how this year had a different marking of the ME Awareness Day, but also offers a hope that research into "the long-term sequelae of COVID-19 can help shed light on the mechanisms behind the development of chronic disease after an infectious illness"
Article here Thread here
More on that Norwegian CBT/Music Therapy Study
David Tuller walks us through a recent study on CBT and Music Therapy as treatment approach to CFS. The researchers concluded the treatment as feasible and acceptable, despite having results showing poorer performance from the intervention group than the control group.
Article here Thread here
.......................
News, articles, videos
Germany. Article on ME/CFS in the newspaper Berliner Zeitung titled “Corona könnte krankhaft - chronisches Erschöpfungssyndrom auslösen“. The article discusses the research of Carmen Scheibenbogen and Bhupesh Prusty. It also mentions the campaign by Millions Missing Germany to send postcards to Federal Minister of Health Jens Spahn, asking him to take action on ME/CFS.
Article here Thread here
Cochrane. Hilda Bastian, head of the independent advisory group, has started making a list of accessible published commentaries and critiques of the Cochrane review on exercise therapy for CFS.
Tweet here Thread here
Scotland Coverage from The Times on a campaign from Scottish ME patients urging ministers to withdraw the harmful treatment approach graded exercise therapy.
Article here (paywalled) Thread here
UK - Letter to NICE Olivia Blake, MP, member of the All Party Parliamentary Group on ME has written to NICE about the indefinitely delayed ME/CFS review. 'I hope you would agree that the risks posed to both current and future patients by the continued usage of graded exercise therapy and other harmful treatments shows an urgent need to resume rewriting NICE guidance for ME treatment, particularly as it is becoming clear Covid-19 will lead to many more people developing ME.'
Thread with letter here
A life Hidden This is love: An Appeal to Musicians
Naomi Whittingham writes about Kara who is seriously ill with ME and in an extremely fragile situation. Kara is also a gifted songwriter and has recorded vocals from her bed. She is asking for help from musicians to assist with fulfilling her music project.
BBC also wrote an article about Kara and Naomi's appeal.
Article here BBC article here Thread here
CDC "CDC Team Takes ME/CFS Around The World"
Head of the ME/CFS program Dr. Elisabeth Unger describes how her team impacts ME/CFS internationally and says: By incorporating the input of patients and healthcare providers, we hope to show that learning works best when everyone works together.
Article here Thread here
PEM information film Subtitles in Czech, Danish, Dutch, Finnish, French, German and Swedish added to short film about PEM from the Norwegian ME Association - Rogaland County.
Thread with film here
OMF Actress Jennie Jacques is OMF's newest Celebrity Ambassador.
In the announcement from OMF Jennie Jacques expresses a keen interest in the science behind ME/CFS and that she "hope to come up with creative ways to engage with researchers and ultimately use my platform to raise awareness and further educate people".
Announcement here Thread here
.......................
Covid-19 and ME
Center For Solutions For ME/CFS Will there be a Post-Covid-19 of ME/CFS?
In this article Dr. Anthony Komaroff from Harvard Medical School looks at previous epidemics and current research and concludes it is "entirely plausible that some cases of ME/CFS will develop in people who get COVID-19".
Article here Thread here
Physios for ME "Post Covid-19 Rehabilitation"
An information sheet to help physios start thinking about PVFS and ME if involved in post COVID rehabilitation. The sheet alerts physiotherapists to the possibility of post viral fatigue in Covid-19 patients and warns of the dangers of exercise based standard rehabilitation.
Document here Thread here
Huffington Post "Coronavirus Is Leaving People With Serious Fatigue"
Interviews with professor Paul Garner from Liverpool School of Tropical Medicine and dr. Charles Shepherd from the ME Association on Covid-19, post viral fatigue and activity management.
Article here Thread here
Iceland Article by the Morgunbladid where the patient organisation ME-félags ísland expresses concern of a possible increase of ME patients following the Corona virus. They also say the medical assessment for ME needs to be improved in order to provide the best treatments for the patients.
Article here (Icelandic) Thread here
.......................
Useful Resources
UK: Continuing Professional Development (CPD) Module on ME/CFS by Dr Nina Muirhead
Excellent free resource for medical students and professionals that includes diagnosis, post exertional malaise, the dangers of prescribing exercise, and care needs of patients. Participants learn through case studies. The module was developed by the CMRC Medical Education Group led by Dr Nina Muirhead, and leads to the award of a certificate.
Module here MEA article here
Introductory article by Dr Muirhead here Thread here
Australia and New Zealand: Continuing Medical Education Module on ME/CFS
"Busting the myths and redefining ME/CFS"
'This program was developed by ThinkGP in collaboration with Emerge Australia Inc and has been endorsed as part of the The Royal New Zealand College of General Practitioners (RNZCGP) continuing medical education program (CME).'
Module here ME Awareness NZ article here Thread here
..............................
Research news
UK: ME/CFS Biomedical Partnership reports that the decision on the application for funding of the planned Genome Wide Association Study (GWAS) has been delayed by the Covid-19 pandemic.
Thread here
UK Physios for ME, a group of physiotherapists in the United Kingdom with a special interest in ME has announced that they have secured funding for a new research project. The study is called “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 ME association provided funding for the study.
Article here Thread here
..........................
Research and review
Journal of Translational Medicine
A systematic review of metabolomic dysregulation in CFS/ME/SEID by Huth et al.
The Australian research team of Donald Staines and Sonya Marshall‑Gradisnik did a systematic review on metabolomic dysregulation in ME/CFS. 11 observational case-control studies were found. The authors conclude that “based on the data currently available, metabolomics does not contribute to the pathogenesis of CFS/ME/SEID.”
Article here Thread here
Journal of Psychosomatic Research
"The role of partners' fatigue and the patient-partner relationship in the outcome of cognitive behavioural therapy for chronic fatigue syndrome" by Braamse et al.
This Dutch research team reports that partners of patients with CFS have lower fatigue than controls and that fatigue in partners is not related to chronic fatigue patients' fatigue. After controlling for patients' baseline fatigue severity and functional impairment, only relationship dissatisfaction as reported by (female) patients significantly predicted worse treatment outcome.
Article here Thread here
Pilot and Feasibility Studies
"The feasibility and acceptability of an early intervention in primary care to prevent chronic fatigue syndrome (CFS) in adults: randomised controlled trial." By O’Dowd et al.
The research team of Prof. Esther Crawley has conducted a feasibility randomized trial to test an early intervention for fatigue of 1 to 4 months duration in primary care. The authors conclude that the trial was not feasible. There were problems with recruitment and some participants found the intervention problematic and did not relate to the therapeutic model.
Article here Thread here
.......................
Advocacy
USA The Solve ME/CFS group is working with Senator Ed Markey to get ME/CFS research funds included in the next COVID-19 package. They are working with Markey's staff now to finalize a Senate leadership letter. There will be a request soon (within a week?) asking folks to contact their senators to ask for their support.
Thread here
........................
Job vacancy
Sweden The ME/CFS Center at Stora Sköndal is hiring a doctor with specialist training in general medicine, neurology, immunology, rheumatology or pain.
Notice here (in Swedish) Thread here
......................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 18th May 2020
ME Awareness month
UK ME Association For ME Awareness month, the MEA have posted a series of personal stories by people with ME, as well as linking to some free resources on symptom management, a reminder that the MEA can send information to your GP, and information about the new GP training module.
MEA link to articles here Media toolkit here Thread here
#MEAction A number of ME patients joined a virtual choir for #MillionsMissing 2020 and made a video while singing "You've Got a Friend"
Thread with video here
UK - Cure ME "Research Round-up: our work over the last year". As part of ME Awareness week, the UK ME/CFS Biobank team summarise their research with links to more detailed accounts.
Article here Thread here
....................
News, articles and webinar
USA Solve M.E. has announced their new President and CEO, Oved Amitay.
Press Release here Thread here
Cochrane Independent Advisory Group Hilda Bastian, head of the independent advisory group, has created an open sheet for additional links related to the Cochrane review on exercise for CFS. This list contains documents that are relevant to the review but didn’t fit the scope of the first list which focuses on commentaries and critiques.
Open sheet here Thread here
Anil van der Zee "The fear in my doctor's eyes"
Excellent article examining why medical consultations between doctors and ME patients often are difficult, and what can be done to better this situation.
Article here Thread here
Norway "The catch 22 of the ME debate"
Opinion piece by psychologist Grete Lilledalen in a medical newspaper on the importance of separating ME from general stress/burnout/fatigue and to always have faith in what the patient is telling.
Article here (Norwegian) Thread here
USA - INIM Webinar "Understanding ME/CFS Today: A Clinical & Research Approach" NSU Florida Institute for Neuroimmune Medicine'
Four lectures on Functional & Integrative Medicine, environmental, and nutrition approaches in patients with ME/CFS, and 'The Potential Role of Ocular and Otolaryngological Mucus Proteins in ME/CFS'. Duration 3 hours.
Video here Thread here
....................
Trial by Error by David Tuller
More Strangeness with that Norwegian CBT/Music Therapy Study
A second article presenting further problematic aspects — the protocol and statistical analysis plan — with this study on CBT and music therapy as treatment approach to chronic fatigue following Epstein-Barr virus infection in adolescents.
Article here Thread here
Norway's Double Whammy of Fuzzy Science
A third article on the CBT/Music Therapy study on its peer review process. Also discusses a recent news article on a planned study on the controversial alternative method Lightning Process. The article mentioned David Tuller's criticism of previous research into this method and omitted his academic credentials.
Article here Thread here
My Letter to Senior Author of Norway's CBT-Music Therapy Study
David Tuller asks prof. Wyller eight questions concerning his latest study on CBT and music therapy. Wyller is offered Virology Blog as platform for his response.
Article here Thread here
......................
Covid-19 and ME
World Confederation for Physical Therapy released the briefing paper "Rehabilitation and the vital role of physiotherapy". Thanks to Physios for ME it also includes on page 7 information about ME, PEM and harm associated with progressive physiotherapy.
Paper here Thread here and here
BMJ "Paul Garner: Covid-19 and fatigue — a game of snakes and ladders"
Opinion piece by professor of infectious diseases Paul Garner who has suffered from Covid-19 and is experiencing several symptoms that are familiar to ME. "I am reading materials about pacing and CFS/ME and listening to the CFS/ME community. I am taken aback that doctors have been so dismissive of what these patients have been saying for so long."
Article here Thread here
Emerge Australia "Coronavirus and ME — Simplified facts"
An excellent resource with information on all aspects of the pandemic in Australia, with links to sources of help — medical, social and financial, and state by state updates on control measures.
Article here Thread here
USA Open Medicine Foundation (OMF) has announced a new study: "a multi-year collaborative effort to unlock the triggering mechanisms of ME/CFS revealed through the study of post-COVID-19 patients."
Announcement here Thread here
UK - BACME The British Association for CFS/ME (BACME) has published a document titled: “Post-Viral Fatigue A Guide to Management.” The guideline aims to give advice to help people after an illness, such as a viral infection, to try to manage and reduce the fatigue that they may be experiencing. People who have developed post-viral fatigue and ME/CFS and carers of people with ME/CFS h were involved in writing the document.
Guide here Thread here
.....................
Biomedical research
Advances in Physical Education
"Heart Rate Thresholds to Limit Activity in ME/CFS Patients (Pacing): Comparison of Heart Rate Formulae and Measurements of the Heart Rate at the Lactic Acidosis Threshold during Cardiopulmonary Exercise Testing" by van Campen et al.
This study of 90 patients found the CPET threshold heart rate was not well predicted by calculations based on 55% of age related formula. The authors conclude the formula has limited application in clinical practice.
A Twitter thread by Todd Davenport of the Workwell Foundation who developed the formula points out that it is still useful for pacing, as it tends to underestimate the anaerobic ventilatory threshold, giving a safety margin to help prevent PEM.
Paper here Twitter thread here Thread here
Journal of Translational Medicine (preprint - not yet peer reviewed)
"Hemodynamics During the 10-Minute NASA Lean Test: Evidence of Circulatory Decompensation in a Subset of ME/CFS Patients" by Lee, Bateman et al.
75 patients with less than 4 years ME, 75 more than 10 years and 75 healthy controls. 'Circulatory decompensation characterized by increased heart rate and abnormally narrow pulse pressure was identified in a subgroup of ME/CFS patients who have been sick for <4 years. This suggests inadequate ventricular filling from low venous pressure.' This was less apparent in those sick for more than 10 years and controls. 'The 10-minute NLT is a simple and clinically useful point-of-care method that can be used for early diagnosis of ME/CFS and help guide OI treatment.'
Paper here Thread here
.....................
Other research
Cochrane review comments
ME/CFS patient and forum member Michiel Tack has posted detailed comments on the revised version of the Cochrane review on exercise therapy for CFS.
Comments and thread here
International Journal of Qualitative Studies on Health and Well-being
“Patients’ experiences and effects of nonpharmacological treatment for ME/CFS – a scoping mixed methods review” by Mengshoel et al.
This paper, written on behalf of the European Network on ME/CFS (EUROMENE), concludes that CBT reduces fatigue scores more than usual care or waiting list controls in patients with CFS. The effects of rehabilitation and activity-pacing were described as ‘inconsistent’.
Article here Thread here
Journal of Clinical Medicine
“Systematic Review of the Epidemiological Burden of ME/CFS Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology” by Estévez-López et al.
The authors found only three papers on the prevalence or incidence of ME/CFS in Europe (two in the UK and one in Iceland) that meet their their pre-specified inclusion criteria. They conclude: “By evidencing the paucity of epidemiological data on ME/CFS in Europe, our findings point to the pressing need for well-designed and statistically powered epidemiological studies.”
Article here Thread here
.....................
Advocacy
USA Solve M.E. has announced a new advocacy action with a deadline of Monday, May 25th. Please contact your Senators to ask them to support increased funding for post-viral disease research into ME/CFS.
Take action here Thread here
.......................
S4ME social media: Facebook, Twitter and You Tube
ME Awareness month
UK ME Association For ME Awareness month, the MEA have posted a series of personal stories by people with ME, as well as linking to some free resources on symptom management, a reminder that the MEA can send information to your GP, and information about the new GP training module.
MEA link to articles here Media toolkit here Thread here
#MEAction A number of ME patients joined a virtual choir for #MillionsMissing 2020 and made a video while singing "You've Got a Friend"
Thread with video here
UK - Cure ME "Research Round-up: our work over the last year". As part of ME Awareness week, the UK ME/CFS Biobank team summarise their research with links to more detailed accounts.
Article here Thread here
....................
News, articles and webinar
USA Solve M.E. has announced their new President and CEO, Oved Amitay.
Press Release here Thread here
Cochrane Independent Advisory Group Hilda Bastian, head of the independent advisory group, has created an open sheet for additional links related to the Cochrane review on exercise for CFS. This list contains documents that are relevant to the review but didn’t fit the scope of the first list which focuses on commentaries and critiques.
Open sheet here Thread here
Anil van der Zee "The fear in my doctor's eyes"
Excellent article examining why medical consultations between doctors and ME patients often are difficult, and what can be done to better this situation.
Article here Thread here
Norway "The catch 22 of the ME debate"
Opinion piece by psychologist Grete Lilledalen in a medical newspaper on the importance of separating ME from general stress/burnout/fatigue and to always have faith in what the patient is telling.
Article here (Norwegian) Thread here
USA - INIM Webinar "Understanding ME/CFS Today: A Clinical & Research Approach" NSU Florida Institute for Neuroimmune Medicine'
Four lectures on Functional & Integrative Medicine, environmental, and nutrition approaches in patients with ME/CFS, and 'The Potential Role of Ocular and Otolaryngological Mucus Proteins in ME/CFS'. Duration 3 hours.
Video here Thread here
....................
Trial by Error by David Tuller
More Strangeness with that Norwegian CBT/Music Therapy Study
A second article presenting further problematic aspects — the protocol and statistical analysis plan — with this study on CBT and music therapy as treatment approach to chronic fatigue following Epstein-Barr virus infection in adolescents.
Article here Thread here
Norway's Double Whammy of Fuzzy Science
A third article on the CBT/Music Therapy study on its peer review process. Also discusses a recent news article on a planned study on the controversial alternative method Lightning Process. The article mentioned David Tuller's criticism of previous research into this method and omitted his academic credentials.
Article here Thread here
My Letter to Senior Author of Norway's CBT-Music Therapy Study
David Tuller asks prof. Wyller eight questions concerning his latest study on CBT and music therapy. Wyller is offered Virology Blog as platform for his response.
Article here Thread here
......................
Covid-19 and ME
World Confederation for Physical Therapy released the briefing paper "Rehabilitation and the vital role of physiotherapy". Thanks to Physios for ME it also includes on page 7 information about ME, PEM and harm associated with progressive physiotherapy.
Paper here Thread here and here
BMJ "Paul Garner: Covid-19 and fatigue — a game of snakes and ladders"
Opinion piece by professor of infectious diseases Paul Garner who has suffered from Covid-19 and is experiencing several symptoms that are familiar to ME. "I am reading materials about pacing and CFS/ME and listening to the CFS/ME community. I am taken aback that doctors have been so dismissive of what these patients have been saying for so long."
Article here Thread here
Emerge Australia "Coronavirus and ME — Simplified facts"
An excellent resource with information on all aspects of the pandemic in Australia, with links to sources of help — medical, social and financial, and state by state updates on control measures.
Article here Thread here
USA Open Medicine Foundation (OMF) has announced a new study: "a multi-year collaborative effort to unlock the triggering mechanisms of ME/CFS revealed through the study of post-COVID-19 patients."
Announcement here Thread here
UK - BACME The British Association for CFS/ME (BACME) has published a document titled: “Post-Viral Fatigue A Guide to Management.” The guideline aims to give advice to help people after an illness, such as a viral infection, to try to manage and reduce the fatigue that they may be experiencing. People who have developed post-viral fatigue and ME/CFS and carers of people with ME/CFS h were involved in writing the document.
Guide here Thread here
.....................
Biomedical research
Advances in Physical Education
"Heart Rate Thresholds to Limit Activity in ME/CFS Patients (Pacing): Comparison of Heart Rate Formulae and Measurements of the Heart Rate at the Lactic Acidosis Threshold during Cardiopulmonary Exercise Testing" by van Campen et al.
This study of 90 patients found the CPET threshold heart rate was not well predicted by calculations based on 55% of age related formula. The authors conclude the formula has limited application in clinical practice.
A Twitter thread by Todd Davenport of the Workwell Foundation who developed the formula points out that it is still useful for pacing, as it tends to underestimate the anaerobic ventilatory threshold, giving a safety margin to help prevent PEM.
Paper here Twitter thread here Thread here
Journal of Translational Medicine (preprint - not yet peer reviewed)
"Hemodynamics During the 10-Minute NASA Lean Test: Evidence of Circulatory Decompensation in a Subset of ME/CFS Patients" by Lee, Bateman et al.
75 patients with less than 4 years ME, 75 more than 10 years and 75 healthy controls. 'Circulatory decompensation characterized by increased heart rate and abnormally narrow pulse pressure was identified in a subgroup of ME/CFS patients who have been sick for <4 years. This suggests inadequate ventricular filling from low venous pressure.' This was less apparent in those sick for more than 10 years and controls. 'The 10-minute NLT is a simple and clinically useful point-of-care method that can be used for early diagnosis of ME/CFS and help guide OI treatment.'
Paper here Thread here
.....................
Other research
Cochrane review comments
ME/CFS patient and forum member Michiel Tack has posted detailed comments on the revised version of the Cochrane review on exercise therapy for CFS.
Comments and thread here
International Journal of Qualitative Studies on Health and Well-being
“Patients’ experiences and effects of nonpharmacological treatment for ME/CFS – a scoping mixed methods review” by Mengshoel et al.
This paper, written on behalf of the European Network on ME/CFS (EUROMENE), concludes that CBT reduces fatigue scores more than usual care or waiting list controls in patients with CFS. The effects of rehabilitation and activity-pacing were described as ‘inconsistent’.
Article here Thread here
Journal of Clinical Medicine
“Systematic Review of the Epidemiological Burden of ME/CFS Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology” by Estévez-López et al.
The authors found only three papers on the prevalence or incidence of ME/CFS in Europe (two in the UK and one in Iceland) that meet their their pre-specified inclusion criteria. They conclude: “By evidencing the paucity of epidemiological data on ME/CFS in Europe, our findings point to the pressing need for well-designed and statistically powered epidemiological studies.”
Article here Thread here
.....................
Advocacy
USA Solve M.E. has announced a new advocacy action with a deadline of Monday, May 25th. Please contact your Senators to ask them to support increased funding for post-viral disease research into ME/CFS.
Take action here Thread here
.......................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 25th May 2020
News
Dialogues for a neglected illness - Severe & Very Severe ME/CFS
A sixth film from this important project enabled by the Wellcome Public Engagement Fund. Through interviews with doctors, carers and patients and with short, informative texts this film helps viewers gain an insight into the devastating realities of severe ME/CFS.
Duration 15 minutes
Introduction to the film project by the ME Association here.
Film here Thread here
Cochrane
Caroline Struthers, senior EQUATOR Research Fellow at the University of Oxford, has obtained parts of the correspondence between Cochrane and the Norwegian Institute of Public Health regarding the review on exercise therapy for CFS through a freedom of information request.
Email correspondence and forum discussion here
.............................
Articles
ScienceNorway "Cancer drug helped patients with chronic fatigue syndrome (CFS/ME)
A Norwegian research news site recently wrote about the clinical trial on Cyclophosphamide and ME. The article has now been translated into English and contains interviews with the researchers Ingrid G. Rekeland and Øystein Fluge.
Article here Thread here
BMJ "Inaccuracy in reporting CEBA part II"
Excellent comment by forum member Michiel Tack with critical analysis of the recent study on music therapy and CBT as treatment approach to ME. Through five arguments Tack reaches the conclusion: CBT combined with music therapy was associated with a high drop-out rate and lower activity levels than participants who received no intervention.
Comment here (BMJ) and here (PubPeer) Thread here
...................
Trial by Error by David Tuller
My Letter to Peer Reviewer of BMJ's CBT-Music Therapy Paper
David Tuller has written to Dr. Maria Loades, one of the peer reviewers of the recently published CBT-Music Therapy study. She is asked if she knew about and is surprised that this originally fully powered trial was published as a feasibility trial instead.
Letter here Thread here
Tack's Take on BMJ's CBT-Music Therapy "Feasibility Study"
A repost of Michiel Tack's "cogent and meticulously argued comment" of the recent CBT/Music Therapy study as treatment intervention. See item above.
Repost here Thread here
Two Letters to Dagbladet About Its ME Coverage
The Norwegian newspaper Dagbladet has published several articles promoting Lightning Process and CBT while disapproving patients critical of these approaches. Professor Jonathan Edwards and Dr David Tuller have both written excellent letters to Dagbladet in response to the first round of the articles.
Letters here Thread here
....................
Covid-19 and ME
Washington Post "Researchers warn covid-19 could cause debilitating long-term illness in some patients" by Brian Vastag and Beth Mazur.
Excellent article drawing parallels between post covid-19 symptoms, post viral fatigue syndrome and ME/CFS and describing research on post Covid-19 patients being done by the NIH, Mady Hornig, Ron Davis and others which may also provide useful information about ME/CFS.
Article here Thread here
USA As a result of advocacy work done by Solve M.E. and others, a group of 13 senators, led by Senator Ed Markey, have called for ME/CFS medical research funding in the upcoming Coronavirus Relief Package.
Press release here Thread here
.....................
Biomedical research news and fundraising
Morten group, Oxford A new website has been set up for the ME/CFS research group led by Dr Karl Morton of Oxford University. The site includes information about the researchers, projects and fundraising. Research projects include using Raman spectroscopy to look for a biomarker, and determining if abnormal profiles of L-form bacteria could be causal in ME/CFS. The Raman spectroscopy project, planned to start in January 2021, is fundraising and needs £300,000.
Website here Fundraising here Thread here
Open Medicine Foundation (OMF)
OMF has announced a new clinical trial "to understand potential disturbances in the tryptophan metabolism and to test the benefits of treating people with ME / CFS with Kynurenine."
Article here Thread here
................................
Biomedical research
Trinity College Dublin thesis
"Investigation into the Pathophysiology & the Objective Neurophysiological Measurement of Cancer-Related Fatigue" by C. O'Higgins.
This research compared pre treatment cancer related fatigue (CRF), CFS and healthy controls. Patients were given a fatiguing task (sustained isometric contraction) using a hand held dynamometer. Electroencephalography (EEG) and electromyography (EMG) changes measured during the task showed differences from healthy controls which the author suggests may be useful for explaining the central and peripheral mechanisms of fatigue and for objective clinical diagnosis.
Thesis here Thread here
......................
Other research
Clinical Child Psychology and Psychiatry
“Sleep problems in adolescents with CFS: A case-control study nested within a prospective clinical cohort” by Loades et al.
The research team of Trudie Chalder reports that adolescent CFS patients have more sleep problems compared to healthy controls and adolescents with asthma. A hierarchical linear regression found that most of the of the variance in insomnia scale score at follow-up was predicted by the combination of depression, trait anxiety and catastrophising at baseline.
Article here Thread here
Zeitschrift für Psychologie
“Do Women With Severe Persistent Fatigue Present With Fatigue at the Primary Care Consultation?” By Hartman et al.
This Dutch research team reports, surprisingly, that “more than half of the women with severe persistent fatigue did not visit their GP with fatigue as reason for encounter at all during the 4 years of study.” The authors conclude that “underdiagnosis of severe persistent fatigue is partly a consequence of patients not presenting or reporting this to their GP. The reasons for this behavior are not clear.”
Article here Thread here
Journal of Affective Disorders
“Do adolescents with Chronic Fatigue Syndrome (CFS/ME) and co-morbid anxiety and/or depressive symptoms think differently to those who do not have co-morbid psychopathology?” by Loades et al.
The authors grouped 205 adolescents with CFS on the basis of comorbid psychopathology. The thinking pattern of both groups was then compared. The authors conclude that the group with co-morbid psychopathology “tend to be negatively biased in their thinking, both generally and about their symptoms of fatigue specifically.”
Article here Thread here
Metabolites
“Letter to the Editor of Metabolites” by Hanson & Germain
Maureen Hanson and her postdoc Arnaud Germain have published a clarification of their statement that the worldwide prevalence rate of ME/CFS is likely over 65 million patients. They refer to several epidemiological studies and extrapolated a 0.86% prevalence estimate to the world population of 7.8 billion people.
Letter here Thread here
Journal of Psychosomatic Research
"Patterns of daytime physical activity in patients with chronic fatigue syndrome" by King et al.
This study used data from the PACE trial and grouped patients by their pattern of physical activity as measured by an accelerometer. Patients were grouped into one of four patterns: pervasively inactive (21%), pervasively active (11%), boom and bust (30%), or indeterminate (38%).The authors report that “pervasively inactive patients were more physically disabled, those in the pervasively active group were more anxious, and those in the boom and bust group had more sleep disturbance.”
Article here Thread here
University of Amsterdam
"Cognitive Behaviour Therapy for Chronic Fatigue Syndrome: Long-term Follow-up and Internet-based Treatment" by AJ. Janse
Anthonie Janse has published his PhD on cognitive behavioural therapy (CBT) for ME/CFS at the University of Amsterdam. His study tried to find predictors for long-term outcomes and develop an internet version of CBT for ME/CFS. Knoop and Bleijenberg were supervisors.
Thesis here Thread here
Washington University
“Modeling Disability: Softly Making the Invisible Visible by” L. Evan.
Libby Evan has published a Bachelor of Fine Arts thesis at Washington University on invisible disability that includes the story of a person with CFS.
Thesis here Thread here
......................
S4ME social media: Facebook, Twitter and You Tube
News
Dialogues for a neglected illness - Severe & Very Severe ME/CFS
A sixth film from this important project enabled by the Wellcome Public Engagement Fund. Through interviews with doctors, carers and patients and with short, informative texts this film helps viewers gain an insight into the devastating realities of severe ME/CFS.
Duration 15 minutes
Introduction to the film project by the ME Association here.
Film here Thread here
Cochrane
Caroline Struthers, senior EQUATOR Research Fellow at the University of Oxford, has obtained parts of the correspondence between Cochrane and the Norwegian Institute of Public Health regarding the review on exercise therapy for CFS through a freedom of information request.
Email correspondence and forum discussion here
.............................
Articles
ScienceNorway "Cancer drug helped patients with chronic fatigue syndrome (CFS/ME)
A Norwegian research news site recently wrote about the clinical trial on Cyclophosphamide and ME. The article has now been translated into English and contains interviews with the researchers Ingrid G. Rekeland and Øystein Fluge.
Article here Thread here
BMJ "Inaccuracy in reporting CEBA part II"
Excellent comment by forum member Michiel Tack with critical analysis of the recent study on music therapy and CBT as treatment approach to ME. Through five arguments Tack reaches the conclusion: CBT combined with music therapy was associated with a high drop-out rate and lower activity levels than participants who received no intervention.
Comment here (BMJ) and here (PubPeer) Thread here
...................
Trial by Error by David Tuller
My Letter to Peer Reviewer of BMJ's CBT-Music Therapy Paper
David Tuller has written to Dr. Maria Loades, one of the peer reviewers of the recently published CBT-Music Therapy study. She is asked if she knew about and is surprised that this originally fully powered trial was published as a feasibility trial instead.
Letter here Thread here
Tack's Take on BMJ's CBT-Music Therapy "Feasibility Study"
A repost of Michiel Tack's "cogent and meticulously argued comment" of the recent CBT/Music Therapy study as treatment intervention. See item above.
Repost here Thread here
Two Letters to Dagbladet About Its ME Coverage
The Norwegian newspaper Dagbladet has published several articles promoting Lightning Process and CBT while disapproving patients critical of these approaches. Professor Jonathan Edwards and Dr David Tuller have both written excellent letters to Dagbladet in response to the first round of the articles.
Letters here Thread here
....................
Covid-19 and ME
Washington Post "Researchers warn covid-19 could cause debilitating long-term illness in some patients" by Brian Vastag and Beth Mazur.
Excellent article drawing parallels between post covid-19 symptoms, post viral fatigue syndrome and ME/CFS and describing research on post Covid-19 patients being done by the NIH, Mady Hornig, Ron Davis and others which may also provide useful information about ME/CFS.
Article here Thread here
USA As a result of advocacy work done by Solve M.E. and others, a group of 13 senators, led by Senator Ed Markey, have called for ME/CFS medical research funding in the upcoming Coronavirus Relief Package.
Press release here Thread here
.....................
Biomedical research news and fundraising
Morten group, Oxford A new website has been set up for the ME/CFS research group led by Dr Karl Morton of Oxford University. The site includes information about the researchers, projects and fundraising. Research projects include using Raman spectroscopy to look for a biomarker, and determining if abnormal profiles of L-form bacteria could be causal in ME/CFS. The Raman spectroscopy project, planned to start in January 2021, is fundraising and needs £300,000.
Website here Fundraising here Thread here
Open Medicine Foundation (OMF)
OMF has announced a new clinical trial "to understand potential disturbances in the tryptophan metabolism and to test the benefits of treating people with ME / CFS with Kynurenine."
Article here Thread here
................................
Biomedical research
Trinity College Dublin thesis
"Investigation into the Pathophysiology & the Objective Neurophysiological Measurement of Cancer-Related Fatigue" by C. O'Higgins.
This research compared pre treatment cancer related fatigue (CRF), CFS and healthy controls. Patients were given a fatiguing task (sustained isometric contraction) using a hand held dynamometer. Electroencephalography (EEG) and electromyography (EMG) changes measured during the task showed differences from healthy controls which the author suggests may be useful for explaining the central and peripheral mechanisms of fatigue and for objective clinical diagnosis.
Thesis here Thread here
......................
Other research
Clinical Child Psychology and Psychiatry
“Sleep problems in adolescents with CFS: A case-control study nested within a prospective clinical cohort” by Loades et al.
The research team of Trudie Chalder reports that adolescent CFS patients have more sleep problems compared to healthy controls and adolescents with asthma. A hierarchical linear regression found that most of the of the variance in insomnia scale score at follow-up was predicted by the combination of depression, trait anxiety and catastrophising at baseline.
Article here Thread here
Zeitschrift für Psychologie
“Do Women With Severe Persistent Fatigue Present With Fatigue at the Primary Care Consultation?” By Hartman et al.
This Dutch research team reports, surprisingly, that “more than half of the women with severe persistent fatigue did not visit their GP with fatigue as reason for encounter at all during the 4 years of study.” The authors conclude that “underdiagnosis of severe persistent fatigue is partly a consequence of patients not presenting or reporting this to their GP. The reasons for this behavior are not clear.”
Article here Thread here
Journal of Affective Disorders
“Do adolescents with Chronic Fatigue Syndrome (CFS/ME) and co-morbid anxiety and/or depressive symptoms think differently to those who do not have co-morbid psychopathology?” by Loades et al.
The authors grouped 205 adolescents with CFS on the basis of comorbid psychopathology. The thinking pattern of both groups was then compared. The authors conclude that the group with co-morbid psychopathology “tend to be negatively biased in their thinking, both generally and about their symptoms of fatigue specifically.”
Article here Thread here
Metabolites
“Letter to the Editor of Metabolites” by Hanson & Germain
Maureen Hanson and her postdoc Arnaud Germain have published a clarification of their statement that the worldwide prevalence rate of ME/CFS is likely over 65 million patients. They refer to several epidemiological studies and extrapolated a 0.86% prevalence estimate to the world population of 7.8 billion people.
Letter here Thread here
Journal of Psychosomatic Research
"Patterns of daytime physical activity in patients with chronic fatigue syndrome" by King et al.
This study used data from the PACE trial and grouped patients by their pattern of physical activity as measured by an accelerometer. Patients were grouped into one of four patterns: pervasively inactive (21%), pervasively active (11%), boom and bust (30%), or indeterminate (38%).The authors report that “pervasively inactive patients were more physically disabled, those in the pervasively active group were more anxious, and those in the boom and bust group had more sleep disturbance.”
Article here Thread here
University of Amsterdam
"Cognitive Behaviour Therapy for Chronic Fatigue Syndrome: Long-term Follow-up and Internet-based Treatment" by AJ. Janse
Anthonie Janse has published his PhD on cognitive behavioural therapy (CBT) for ME/CFS at the University of Amsterdam. His study tried to find predictors for long-term outcomes and develop an internet version of CBT for ME/CFS. Knoop and Bleijenberg were supervisors.
Thesis here Thread here
Washington University
“Modeling Disability: Softly Making the Invisible Visible by” L. Evan.
Libby Evan has published a Bachelor of Fine Arts thesis at Washington University on invisible disability that includes the story of a person with CFS.
Thesis here Thread here
......................
S4ME social media: Facebook, Twitter and You Tube