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News in Brief - April 2020
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Week beginning 30th March 2020
News and media
USA Solve M.E. is partnering with UCLA (University of California, Los Angeles) Iris Cantor Women’s Health Center to expand ME/CFS research.
Announcement here Thread here
USA The audio recording of the NIH ME/CFS Advocacy Call on March 17, 2020 (with guest speaker Leonard Jason, Ph.D., DePaul University) is now available.
Recording here Thread here
USA The Open Medicine Foundation (OMF) has published their March 2020 newsletter - a 2019 "Year In Review" for OMF.
Newsletter here Thread here
UK Invest in ME Research March newsletter is out. It includes notification of the cancellation of this year's conference, and tentative dates for the next conference week, 25th to 29th May 2021. Also updates on working with European collaborators and publicising a Dutch study of ME/CFS patients and Covid-19.
Newsletter here Thread here 2021 Conference thread here
ME and PEM An information film in English about PEM (Post Exertional Malaise). Made by the Norwegian ME Association - Rogaland County and available on YouTube and Facebook.
Duration: 3 minutes.
Thread with film here
.........................
Covid-19 and ME
UK ME Association Latest Covid-19 information from Dr Charles Shepherd published 31st March. A comprehensive article covering many issues of concern to people with ME.
Article here Thread here
The Economist 1843 - Notes on isolation, from those who know it well
Together with a former hostage and an astronaut, author and ME/CFS sufferer Susanna Hislop shares her thoughts on isolation in the age of the Corona virus.
Article here Thread here
RSVP Live "Woman with ME shares fears over coronavirus" Article from Ireland about Corina who suffers from ME and is dependent on carers, which might leave her more vulnerable for picking up the virus.
Article here Thread here
Trial by Error A Long-Time Patient Reflects on a Stay-At-Home World
A re-post of an article from Sarah Sweet from March 26th. The article was first published by the Canadian TVO and titled "Ive been self-isolating (more or less) for 13 years. Here's some advice".
Article here Thread here
........................
Research
Brain, Behavior & Immunity
"MCP-1 is Increased in Patients with CFS and FM, whilst several other immune markers are significantly lower than healthy controls" by Groven et al.
About 50 each of female ME (Fukuda), FM patients and healthy controls had a range of blood markers tested. A few were found to show between group differences.
Article here Thread here
Nature - Scientific Reports
"Systemic Hyperalgesia in Females with Gulf War Illness, Chronic Fatigue Syndrome and Fibromyalgia" by Surian and Baraniuk.
The physical sign of systemic hyperalgesia (tenderness) was assessed in 920 women using pressure dolorimetry on traditional tender points. The women with GWI, CFS and FM were shown to have systemic hyperalgesia compared to sedentary controls.
Article here Thread here
Autoimmunity Reviews
"A Unifying Hypothesis of the Pathophysiology of ME/CFS: Recognitions from the finding of autoantibodies against ß2-adrenergic receptors" by Wirth and Sheibenbogen.
The authors found specific autoantibodies in a subset of patients. '...we would expect their functional disturbance to result in vasoconstriction and hypoxemia.' These findings are consistent with reported hypoperfusion and metabolic changes found in other studies. 'Here we try to develop a unifying working concept for the complex pathomechanism of ME/CFS based on the presence of dysfunctional autoantibodies against ß2AdR and M3 acetylcholine receptor and extrapolate it to the pathophysiology of ME/CFS without an autoimmune pathogenesis.'
Article here Thread here
Allergy, Asthma & Clinical Immunology
"The presence of overlapping quality of life symptoms in primary antibody defciency (PAD) and chronic fatigue syndrome (CFS)" by Bansal et al.
Using self-completed postal questionnaires Bansal et al. found that 16% of 188 patients with PAD had symptoms compatible with CFS, a percentage that is significantly higher than in the general population. While the presence of signifcant fatigue correlated with the presence of anxiety and depression, there was no association with self-reported lung damage.
Article here Thread here
........................
S4ME social media: Facebook, Twitter and You Tube
News and media
USA Solve M.E. is partnering with UCLA (University of California, Los Angeles) Iris Cantor Women’s Health Center to expand ME/CFS research.
Announcement here Thread here
USA The audio recording of the NIH ME/CFS Advocacy Call on March 17, 2020 (with guest speaker Leonard Jason, Ph.D., DePaul University) is now available.
Recording here Thread here
USA The Open Medicine Foundation (OMF) has published their March 2020 newsletter - a 2019 "Year In Review" for OMF.
Newsletter here Thread here
UK Invest in ME Research March newsletter is out. It includes notification of the cancellation of this year's conference, and tentative dates for the next conference week, 25th to 29th May 2021. Also updates on working with European collaborators and publicising a Dutch study of ME/CFS patients and Covid-19.
Newsletter here Thread here 2021 Conference thread here
ME and PEM An information film in English about PEM (Post Exertional Malaise). Made by the Norwegian ME Association - Rogaland County and available on YouTube and Facebook.
Duration: 3 minutes.
Thread with film here
.........................
Covid-19 and ME
UK ME Association Latest Covid-19 information from Dr Charles Shepherd published 31st March. A comprehensive article covering many issues of concern to people with ME.
Article here Thread here
The Economist 1843 - Notes on isolation, from those who know it well
Together with a former hostage and an astronaut, author and ME/CFS sufferer Susanna Hislop shares her thoughts on isolation in the age of the Corona virus.
Article here Thread here
RSVP Live "Woman with ME shares fears over coronavirus" Article from Ireland about Corina who suffers from ME and is dependent on carers, which might leave her more vulnerable for picking up the virus.
Article here Thread here
Trial by Error A Long-Time Patient Reflects on a Stay-At-Home World
A re-post of an article from Sarah Sweet from March 26th. The article was first published by the Canadian TVO and titled "Ive been self-isolating (more or less) for 13 years. Here's some advice".
Article here Thread here
........................
Research
Brain, Behavior & Immunity
"MCP-1 is Increased in Patients with CFS and FM, whilst several other immune markers are significantly lower than healthy controls" by Groven et al.
About 50 each of female ME (Fukuda), FM patients and healthy controls had a range of blood markers tested. A few were found to show between group differences.
Article here Thread here
Nature - Scientific Reports
"Systemic Hyperalgesia in Females with Gulf War Illness, Chronic Fatigue Syndrome and Fibromyalgia" by Surian and Baraniuk.
The physical sign of systemic hyperalgesia (tenderness) was assessed in 920 women using pressure dolorimetry on traditional tender points. The women with GWI, CFS and FM were shown to have systemic hyperalgesia compared to sedentary controls.
Article here Thread here
Autoimmunity Reviews
"A Unifying Hypothesis of the Pathophysiology of ME/CFS: Recognitions from the finding of autoantibodies against ß2-adrenergic receptors" by Wirth and Sheibenbogen.
The authors found specific autoantibodies in a subset of patients. '...we would expect their functional disturbance to result in vasoconstriction and hypoxemia.' These findings are consistent with reported hypoperfusion and metabolic changes found in other studies. 'Here we try to develop a unifying working concept for the complex pathomechanism of ME/CFS based on the presence of dysfunctional autoantibodies against ß2AdR and M3 acetylcholine receptor and extrapolate it to the pathophysiology of ME/CFS without an autoimmune pathogenesis.'
Article here Thread here
Allergy, Asthma & Clinical Immunology
"The presence of overlapping quality of life symptoms in primary antibody defciency (PAD) and chronic fatigue syndrome (CFS)" by Bansal et al.
Using self-completed postal questionnaires Bansal et al. found that 16% of 188 patients with PAD had symptoms compatible with CFS, a percentage that is significantly higher than in the general population. While the presence of signifcant fatigue correlated with the presence of anxiety and depression, there was no association with self-reported lung damage.
Article here Thread here
........................
S4ME social media: Facebook, Twitter and You Tube
Last edited:
Week beginning 6th April 2020
Trial by Error by David Tuller
CROWDFUNDING
David Tuller has initiated a new crowdfunding campaign through Berkeley University in order to continue his important reporting on ME/CFS, MUS and related subjects.
The goal for now is $40,000, with a new round in October.
Crowdfunding here Thread here
A Non-Covid Post about KCL's Rejection of My FOI Request
Tuller's FOI requests concerning the licensing deal for Mahana Therapeutics was rejected by Kings College London.
Article here Thread here
A Post About Lupus and MUS, Not COVID
About a recent study which shows a high number of misdiagnoses of Lupus, which again leaves the patients vulnerable for treatments as the Improving Access to Psychological Therapies program instead of specialist care.
Article here Thread here
...................
Covid-19 and ME
The Globe and Mail Scientists warn COVID-19 could lead to neurological complications in some patients.
Article has comments from among others Dr. Mady Hornig, who names ME/CFS as an example of chronic neurological problem in the aftermath of a coronavirus infection.
Article here Thread here
Bateman Horne Center "Useful medical information when treating COVID-19 in patients with underlying ME/CFS and severe fibromyalgia (FM)"
Two page document including quick tips on management and a brief overview of current evidence of underlying ME pathology.
Article here Thread here
A life Hidden "Life in Lockdown: What Matters When All Is Lost"
Naomi Whittingham with wise reflections on the Corona situation from a severe ME patient's point of view. "As the world gains a new sense of togetherness and a wish for a kinder society beyond the pandemic, it is time for the chronically ill (and those who care for them) to be seen with new eyes".
Article here Thread here
Oregon Live "Seabiscuit" author Laura Hillenbrand on coronavirus symptoms: It felt "like I was breathing through Gauze"
Hillenbrand also talks about suffering from ME/CFS and how that has prepared her for the pandemic.
Article here Thread here
..................
Articles about ME
Sweden Articles about ME in the healthcare magazine Vårdfokus. Interview with ME patient Cim and ME researcher Jonas Bergquist who is optimistic for the future and says a drug trial will be starting in the autumn.
Thread with link to articles and translation here
New Zealand Doctor The April 2020 issue of the New Zealand Doctor publication includes an in-depth 'How to Treat' clinical update article on ME/CFS by Cathy Stephenson and Rose Silvester.
Article here Thread here
The article links to information sheets on PEM and pacing available on the M.E. Awareness NZ website.
PEM the basics here PEM for clinicians here Pacing here
...................
Biomedical research
Plos one
"The effect of ME/CFS severity on cellular bioenergetic function" by Tomas et al.
Mitochondrial function in PBMC's (peripheral blood mononuclear cells) was analysed in moderate and severe ME patients and healthy controls.
Both ME groups had mitochondrial impairment, but only the severe ME group had glycolytic impairment. The authors suggest this may explain the more severe phenotype.
Paper here Thread here
..................
Other research
The Medical Journal of Australia
"Chronic fatigue syndrome: progress and possibilities" by Sandler & Lloyd.
In this review, Australian researchers Carolina Sandler and Andrew Lloyd discuss the scientific literature on CFS, which they describe as “an enigmatic clinical entity which challenges patients, health care providers and researchers alike.” According to the authors, “the field is plagued by a repetitive history of initial enthusiasm and failed replication in clinical trials.” They emphasize a “lack of a diagnostic test, validated biomarker, clear pathophysiology or curative treatment.”
Article here Thread here
Healthcare
"The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of ME/CFS: A Report from the European Network on ME/CFS" (EUROMENE) by Pheby et al.
In this paper, members of the EUROMENE Working Group 3 identify challenges and pitfalls in estimating the economic cost of ME/CFS. The authors note, for example, that many ME/CFS patients remain undiagnosed which makes it difficult to obtain representative information through the use of service utilisation data.
Article here Thread here
Frontiers in Psychiatry
"Emotional Awareness Correlated With Number of Awakenings From Polysomnography in Patients With ME/CFS —A Pilot Study" by Bileviciute-Ljungar and Friberg
This Swedish research group reports a correlation between scores on the Level of Emotional Awareness Scale (LEAS) and the number of awakenings measured with polysomnography (a sleep study) in 23 ME/CFS patients.
Article here Thread here
..................
Survey
NUI Galway
"Investigating the social and pain experiences of people with CFS/ME"
Tara O’Carroll, a masters student of Health Psychology at The National University of Ireland, Galway, has started a research project to investigate pain experiences in people with ME/CFS. The research project is being supervised by Dr Sinéad Conneely. Patients can fill in an anonymous survey for the project online.
Info here Thread here
..................
Advocacy
USA The Solve ME/CFS Initiative has published the schedule for this year's ME/CFS Advocacy Week. Events will be take place online from April 19 to April 26. Advocates are still needed to represent Alaska, Arkansas, Kentucky, Nebraska, and Wyoming - please register by Friday, April 10th.
Schedule here Thread here
USA Join the 2nd Annual EmPOWER M.E. Roundtable on Monday, April 20th at 1pm ET for an online education workshop, “Navigating Public and Private Disability Insurance with ME/CFS.”
Register here Thread here
UK The ME Association and ME Awareness Week, Monday 11th to Sunday 17th May. Events have been cancelled but ME Awareness week will take place on social media.
"The Lost Years, Symptoms and The Coronavirus"
The MEA has chosen two themes this year: 'The lost years' (things people with ME have missed out on), and 'Focus on symptoms', including stories from people with ME who have had coronavirus or been affected by the restrictions.
Article here Thread here
...................
S4ME social media: Facebook, Twitter and You Tube
Trial by Error by David Tuller
CROWDFUNDING
David Tuller has initiated a new crowdfunding campaign through Berkeley University in order to continue his important reporting on ME/CFS, MUS and related subjects.
The goal for now is $40,000, with a new round in October.
Crowdfunding here Thread here
A Non-Covid Post about KCL's Rejection of My FOI Request
Tuller's FOI requests concerning the licensing deal for Mahana Therapeutics was rejected by Kings College London.
Article here Thread here
A Post About Lupus and MUS, Not COVID
About a recent study which shows a high number of misdiagnoses of Lupus, which again leaves the patients vulnerable for treatments as the Improving Access to Psychological Therapies program instead of specialist care.
Article here Thread here
...................
Covid-19 and ME
The Globe and Mail Scientists warn COVID-19 could lead to neurological complications in some patients.
Article has comments from among others Dr. Mady Hornig, who names ME/CFS as an example of chronic neurological problem in the aftermath of a coronavirus infection.
Article here Thread here
Bateman Horne Center "Useful medical information when treating COVID-19 in patients with underlying ME/CFS and severe fibromyalgia (FM)"
Two page document including quick tips on management and a brief overview of current evidence of underlying ME pathology.
Article here Thread here
A life Hidden "Life in Lockdown: What Matters When All Is Lost"
Naomi Whittingham with wise reflections on the Corona situation from a severe ME patient's point of view. "As the world gains a new sense of togetherness and a wish for a kinder society beyond the pandemic, it is time for the chronically ill (and those who care for them) to be seen with new eyes".
Article here Thread here
Oregon Live "Seabiscuit" author Laura Hillenbrand on coronavirus symptoms: It felt "like I was breathing through Gauze"
Hillenbrand also talks about suffering from ME/CFS and how that has prepared her for the pandemic.
Article here Thread here
..................
Articles about ME
Sweden Articles about ME in the healthcare magazine Vårdfokus. Interview with ME patient Cim and ME researcher Jonas Bergquist who is optimistic for the future and says a drug trial will be starting in the autumn.
Thread with link to articles and translation here
New Zealand Doctor The April 2020 issue of the New Zealand Doctor publication includes an in-depth 'How to Treat' clinical update article on ME/CFS by Cathy Stephenson and Rose Silvester.
Article here Thread here
The article links to information sheets on PEM and pacing available on the M.E. Awareness NZ website.
PEM the basics here PEM for clinicians here Pacing here
...................
Biomedical research
Plos one
"The effect of ME/CFS severity on cellular bioenergetic function" by Tomas et al.
Mitochondrial function in PBMC's (peripheral blood mononuclear cells) was analysed in moderate and severe ME patients and healthy controls.
Both ME groups had mitochondrial impairment, but only the severe ME group had glycolytic impairment. The authors suggest this may explain the more severe phenotype.
Paper here Thread here
..................
Other research
The Medical Journal of Australia
"Chronic fatigue syndrome: progress and possibilities" by Sandler & Lloyd.
In this review, Australian researchers Carolina Sandler and Andrew Lloyd discuss the scientific literature on CFS, which they describe as “an enigmatic clinical entity which challenges patients, health care providers and researchers alike.” According to the authors, “the field is plagued by a repetitive history of initial enthusiasm and failed replication in clinical trials.” They emphasize a “lack of a diagnostic test, validated biomarker, clear pathophysiology or curative treatment.”
Article here Thread here
Healthcare
"The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of ME/CFS: A Report from the European Network on ME/CFS" (EUROMENE) by Pheby et al.
In this paper, members of the EUROMENE Working Group 3 identify challenges and pitfalls in estimating the economic cost of ME/CFS. The authors note, for example, that many ME/CFS patients remain undiagnosed which makes it difficult to obtain representative information through the use of service utilisation data.
Article here Thread here
Frontiers in Psychiatry
"Emotional Awareness Correlated With Number of Awakenings From Polysomnography in Patients With ME/CFS —A Pilot Study" by Bileviciute-Ljungar and Friberg
This Swedish research group reports a correlation between scores on the Level of Emotional Awareness Scale (LEAS) and the number of awakenings measured with polysomnography (a sleep study) in 23 ME/CFS patients.
Article here Thread here
..................
Survey
NUI Galway
"Investigating the social and pain experiences of people with CFS/ME"
Tara O’Carroll, a masters student of Health Psychology at The National University of Ireland, Galway, has started a research project to investigate pain experiences in people with ME/CFS. The research project is being supervised by Dr Sinéad Conneely. Patients can fill in an anonymous survey for the project online.
Info here Thread here
..................
Advocacy
USA The Solve ME/CFS Initiative has published the schedule for this year's ME/CFS Advocacy Week. Events will be take place online from April 19 to April 26. Advocates are still needed to represent Alaska, Arkansas, Kentucky, Nebraska, and Wyoming - please register by Friday, April 10th.
Schedule here Thread here
USA Join the 2nd Annual EmPOWER M.E. Roundtable on Monday, April 20th at 1pm ET for an online education workshop, “Navigating Public and Private Disability Insurance with ME/CFS.”
Register here Thread here
UK The ME Association and ME Awareness Week, Monday 11th to Sunday 17th May. Events have been cancelled but ME Awareness week will take place on social media.
"The Lost Years, Symptoms and The Coronavirus"
The MEA has chosen two themes this year: 'The lost years' (things people with ME have missed out on), and 'Focus on symptoms', including stories from people with ME who have had coronavirus or been affected by the restrictions.
Article here Thread here
...................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 13th April 2020
News
USA - On April 13, NIH announced two new funding opportunities for ME/CFS research. Researchers can submit a grant to fund a study using either of these two funding mechanisms.
Announcements here and here Thread here
USA - On April 14, 2020, the NIH updated the entry for ME/CFS on their rare diseases website.
Link here Thread here
.......................
Covid-19 and ME
New Scientist Could the coronavirus trigger post-viral fatigue syndromes?
Short article discussing this questions with input from among others Dr Charles Shepherd from the ME Association who says: "It's quite likely that some people will be developing a post-viral fatigue syndrome, which may then lead into an ME/CFS-like illness".
Article here Thread here
UK survey: Chronic illness and the impact of the coronavirus pandemic.
Organised by the Chronic Illness Inclusion Project, the aim of this survey is to gather evidence for an inquiry by the UK Parliament’s Women and Equalities Committee into the unequal impact of coronavirus (Covid-19) on people with protected characteristics. This will be used to provide evidence to the UK government. Closes 22nd April.
Survey here Thread here
New Zealand survey The Office for Disability Issues is running a weekly survey on the issues and risks being experienced by disabled people in the COVID-19 environment. Each week the ODI will close the survey, analyse the results, and report them to government agencies, disability organisations and the Minister for Disability Issues.
Survey here Thread here
European ME Association (EMEA): The Dutch ME/CFS patient organization “ME/CVS Stichting Nederland” has developed a questionnaire to investigate COVID-19 in patients with ME/CFS. It invites all ME/CFS patient organizations in the Netherlands and other EMEA member countries to participate in the study.
Article here Thread here
The study design, however, has received criticism for lacking information about its goals and methodology. Following a blog post by Lou Corsius, one scientist has announced to withdraw from the study.
Criticism here
.......................
Trial by Error by David Tuller
Berkeley Crowdfunding Month, Coronavirus Edition
The second week of the crowdfunding to ensure that Tuller's important work on reporting on ME/CFS, MUS and related subjects can continue.
Article here Thread here Crowdfunding here
Revisiting Mahana and Irritable Bowel Syndrome...
Tuller writes again to Mahana's CEO and co-funder Robert Paull where he points out that the study behind their licenced online CBT program was clinically insignificant.
Letter here Thread here
A Follow-Up to the Follow-Up Letter to Mahana
Another letter to Mahana's CEO and co-funder Robert Paull providing the background information for why Tuller has taken an interest in the research behind their online CBT program.
Letter here Thread here
Oxford-NHS Recommends GET/CBT for Post-COVID "CFS" Patients
Tuller discusses this recent but outdated and highly problematic pamphlet from the Oxford Health NHS Foundation.
Article here Thread here
......................
Video and podcast
Action CIND - The video for the March 24th webinar on Post-Exertional Malaise, presented by members of Workwell Foundation, is now available on Vimeo.
Video here Thread here
Its Not All About ME - Podcast One Family Four Kids with ME part one
Conversations with the two reflective teenagers and siblings Sean and Niamh who both suffers from ME along with their two other siblings. They talk among other about coping with ME, education, lack of help and assistance, hobbies and projects and hope for the future.
Thread with podcast here
......................
Biomedical research
Journal of Cellular and Molecular Medicine.
"Unravelling ME/CFS: Gender‐specific changes in the microRNA expression profiling in ME/CFS" by Cheema, Klimas et al.
'This is the first ME/CFS exercise challenge study which evaluated gender differences in ME/CFS utilizing miRNA expression profiles. The results of this study have highlighted: (a) miRNAs that are differentially expressed in ME/CFS, (b) altered miRNAs induced by exercise challenge in ME/CFS, (c) gender influenced miRNAs and their differential expression in response to exercise in disease state and finally (d) fasting induced miRNA difference, emphasizing the possible role they may play in the ME/CFS‐associated disease biology.'
Paper here Thread here
Frontiers in Immunology
"Autoimmunity-Related Risk Variants in PTPN22 and CTLA4 Are Associated With ME/CFS With Infectious Onset" by Scheibenbogen et al.
In a study of 300 ME patients and 200 healthy controls, those ME patients with an infectious onset showed a higher frequency of two genetic markers related to autoimmunity than the non infectious onset and healthy controls. 'Both genes play a key role in regulating B and T cell activation.'
Professor Ponting reports on the forum thread that this was not replicated in the larger UK biobank data set.
Paper here Thread here
Preprint (not peer reviewed)
"Physical activity measures in patients with ME/CFS: correlations between peak oxygen consumption, the physical functioning scale of the SF-36 questionnaire, and the number of steps from an activity meter" by Rowe et al.
In a retrospective study of 99 female patients, there was a significant correlation between the three measures (taken at different times), but a large variation was observed between the three measures in individual patients, making the use of a single measure inadequate. 'Integrating the three modalities may be useful for patient care by detecting overt discrepancies and may aid study designs aimed at improving exercise capacity.'
Article here Thread here
Pain Medicine
"Processing of Laser-Evoked Potentials in Patients with Chronic Whiplash-Associated Disorders, CFS, and Healthy Controls" by Goudman et al.
From the abstract: 'Laser-evoked potentials (LEPs) are among the reliable neurophysiological tools to investigate patients with neuropathic pain, as they can provide an objective account of the functional status of thermo-nociceptive pathways. [...] EEG responses of heat-sensitive Aδ fibers in patients with cWAD and CFS revealed no significant differences from the responses of HCs. These findings thus do not support a state of generalized central nervous system hyperexcitability in those patients.'
Paper here Thread here
Università Cattolica del Sacro Cuore
Student thesis: "Potential role of microbiome in CFS/ME" by Guiseppe Lupo.
Found differences in oral and fecal microbiome between people with ME and healthy controls, and suggests that these support an autoimmune hypothesis.
Thesis here Thread here
........................
Other research
Chinese Journal of Integrative Medicine
Acupuncture for Chronic Fatigue Syndrome: An Overview of Systematic Reviews by Yin et al.
This Chinese research group has studied systematic reviews and meta-analyses on acupuncture in CFS. Of 10 reviews found, 8 were Chinese and the methodological quality of all included studies was critically low.
Article here Thread here
BMJ Paediatrics Open
Cognitive–behavioural therapy combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study by Malik et al.
This Norwegian research group conducted a small randomized trial of CBT combined with music in adolescents patients with post-infectious chronic fatigue. Although compliance was high, only 43 of 91 eligible participants agreed to participate and there was a higher drop-out rate in the intervention group (28%) compared to the control group (4%). No statistically significant differences are reported as the trial was underpowered to test the efficacy of the intervention.
Article here Thread here
University of Bristol
A qualitative exploration of treatment preference in paediatric randomised controlled trials by Lucy Beasant.
Beasant, a research associate at the University of Bristol has published her doctoral thesis. It investigates treatment preference in randomized controlled trials of children with acute uncomplicated appendicitis or ME/CFS. FITNET-NHS, SMILE and MAGENTA are among the trials studied.
Thesis here Thread here
British Journal of Occupational Therapy
Energy management education and occupation-related outcomes in adults with chronic diseases: A scoping review by Farragher et al.
The authors did a systematic search of studies energy management education (EME) in various chronic diseases. They conclude that EME has been found to improve outcomes in several studies in multiple sclerosis but that in other illnesses, the evidence is limited and inconclusive. There is a section on CFS where the PACE trial and its limitations are briefly mentioned.
Article here Thread here
......................
Advocacy
UK Priority Setting Partnership facilitated by the James Lind Alliance
This was announced at the CMRC conference last month.
The aim of the project is to identify research priorities for future funding.
Applications from patients, carers and professionals are invited to join the steering group, and close on Monday 20th April at 5pm.
Details here Thread here
USA The EmPOWER M.E. Roundtable online forum - "Navigating Public and Private Disability Insurance with ME/CFS" - is scheduled for Monday, April 20th at 1pm ET. Please register now to hear legal and medical experts share advice on applying, appealing, and documenting your case for Public and Private Disability Insurance with ME/CFS.
Register here Thread here
.....................
Fundraising
David Tuller - see above.
University of Oxford – Understanding the causes of ME/CFS. MEA article describes the planned project, led by Dr Karl Morten, which is crowdfunding for projects in three European centres. '...the recent identification of high levels of L-form bacteria in the blood of ME/CFS patients suggests a compromised immune system could be a biological cause of the illness...'
MEA article here Donate here Thread here
.......................
S4ME social media: Facebook, Twitter and You Tube
News
USA - On April 13, NIH announced two new funding opportunities for ME/CFS research. Researchers can submit a grant to fund a study using either of these two funding mechanisms.
Announcements here and here Thread here
USA - On April 14, 2020, the NIH updated the entry for ME/CFS on their rare diseases website.
Link here Thread here
.......................
Covid-19 and ME
New Scientist Could the coronavirus trigger post-viral fatigue syndromes?
Short article discussing this questions with input from among others Dr Charles Shepherd from the ME Association who says: "It's quite likely that some people will be developing a post-viral fatigue syndrome, which may then lead into an ME/CFS-like illness".
Article here Thread here
UK survey: Chronic illness and the impact of the coronavirus pandemic.
Organised by the Chronic Illness Inclusion Project, the aim of this survey is to gather evidence for an inquiry by the UK Parliament’s Women and Equalities Committee into the unequal impact of coronavirus (Covid-19) on people with protected characteristics. This will be used to provide evidence to the UK government. Closes 22nd April.
Survey here Thread here
New Zealand survey The Office for Disability Issues is running a weekly survey on the issues and risks being experienced by disabled people in the COVID-19 environment. Each week the ODI will close the survey, analyse the results, and report them to government agencies, disability organisations and the Minister for Disability Issues.
Survey here Thread here
European ME Association (EMEA): The Dutch ME/CFS patient organization “ME/CVS Stichting Nederland” has developed a questionnaire to investigate COVID-19 in patients with ME/CFS. It invites all ME/CFS patient organizations in the Netherlands and other EMEA member countries to participate in the study.
Article here Thread here
The study design, however, has received criticism for lacking information about its goals and methodology. Following a blog post by Lou Corsius, one scientist has announced to withdraw from the study.
Criticism here
.......................
Trial by Error by David Tuller
Berkeley Crowdfunding Month, Coronavirus Edition
The second week of the crowdfunding to ensure that Tuller's important work on reporting on ME/CFS, MUS and related subjects can continue.
Article here Thread here Crowdfunding here
Revisiting Mahana and Irritable Bowel Syndrome...
Tuller writes again to Mahana's CEO and co-funder Robert Paull where he points out that the study behind their licenced online CBT program was clinically insignificant.
Letter here Thread here
A Follow-Up to the Follow-Up Letter to Mahana
Another letter to Mahana's CEO and co-funder Robert Paull providing the background information for why Tuller has taken an interest in the research behind their online CBT program.
Letter here Thread here
Oxford-NHS Recommends GET/CBT for Post-COVID "CFS" Patients
Tuller discusses this recent but outdated and highly problematic pamphlet from the Oxford Health NHS Foundation.
Article here Thread here
......................
Video and podcast
Action CIND - The video for the March 24th webinar on Post-Exertional Malaise, presented by members of Workwell Foundation, is now available on Vimeo.
Video here Thread here
Its Not All About ME - Podcast One Family Four Kids with ME part one
Conversations with the two reflective teenagers and siblings Sean and Niamh who both suffers from ME along with their two other siblings. They talk among other about coping with ME, education, lack of help and assistance, hobbies and projects and hope for the future.
Thread with podcast here
......................
Biomedical research
Journal of Cellular and Molecular Medicine.
"Unravelling ME/CFS: Gender‐specific changes in the microRNA expression profiling in ME/CFS" by Cheema, Klimas et al.
'This is the first ME/CFS exercise challenge study which evaluated gender differences in ME/CFS utilizing miRNA expression profiles. The results of this study have highlighted: (a) miRNAs that are differentially expressed in ME/CFS, (b) altered miRNAs induced by exercise challenge in ME/CFS, (c) gender influenced miRNAs and their differential expression in response to exercise in disease state and finally (d) fasting induced miRNA difference, emphasizing the possible role they may play in the ME/CFS‐associated disease biology.'
Paper here Thread here
Frontiers in Immunology
"Autoimmunity-Related Risk Variants in PTPN22 and CTLA4 Are Associated With ME/CFS With Infectious Onset" by Scheibenbogen et al.
In a study of 300 ME patients and 200 healthy controls, those ME patients with an infectious onset showed a higher frequency of two genetic markers related to autoimmunity than the non infectious onset and healthy controls. 'Both genes play a key role in regulating B and T cell activation.'
Professor Ponting reports on the forum thread that this was not replicated in the larger UK biobank data set.
Paper here Thread here
Preprint (not peer reviewed)
"Physical activity measures in patients with ME/CFS: correlations between peak oxygen consumption, the physical functioning scale of the SF-36 questionnaire, and the number of steps from an activity meter" by Rowe et al.
In a retrospective study of 99 female patients, there was a significant correlation between the three measures (taken at different times), but a large variation was observed between the three measures in individual patients, making the use of a single measure inadequate. 'Integrating the three modalities may be useful for patient care by detecting overt discrepancies and may aid study designs aimed at improving exercise capacity.'
Article here Thread here
Pain Medicine
"Processing of Laser-Evoked Potentials in Patients with Chronic Whiplash-Associated Disorders, CFS, and Healthy Controls" by Goudman et al.
From the abstract: 'Laser-evoked potentials (LEPs) are among the reliable neurophysiological tools to investigate patients with neuropathic pain, as they can provide an objective account of the functional status of thermo-nociceptive pathways. [...] EEG responses of heat-sensitive Aδ fibers in patients with cWAD and CFS revealed no significant differences from the responses of HCs. These findings thus do not support a state of generalized central nervous system hyperexcitability in those patients.'
Paper here Thread here
Università Cattolica del Sacro Cuore
Student thesis: "Potential role of microbiome in CFS/ME" by Guiseppe Lupo.
Found differences in oral and fecal microbiome between people with ME and healthy controls, and suggests that these support an autoimmune hypothesis.
Thesis here Thread here
........................
Other research
Chinese Journal of Integrative Medicine
Acupuncture for Chronic Fatigue Syndrome: An Overview of Systematic Reviews by Yin et al.
This Chinese research group has studied systematic reviews and meta-analyses on acupuncture in CFS. Of 10 reviews found, 8 were Chinese and the methodological quality of all included studies was critically low.
Article here Thread here
BMJ Paediatrics Open
Cognitive–behavioural therapy combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study by Malik et al.
This Norwegian research group conducted a small randomized trial of CBT combined with music in adolescents patients with post-infectious chronic fatigue. Although compliance was high, only 43 of 91 eligible participants agreed to participate and there was a higher drop-out rate in the intervention group (28%) compared to the control group (4%). No statistically significant differences are reported as the trial was underpowered to test the efficacy of the intervention.
Article here Thread here
University of Bristol
A qualitative exploration of treatment preference in paediatric randomised controlled trials by Lucy Beasant.
Beasant, a research associate at the University of Bristol has published her doctoral thesis. It investigates treatment preference in randomized controlled trials of children with acute uncomplicated appendicitis or ME/CFS. FITNET-NHS, SMILE and MAGENTA are among the trials studied.
Thesis here Thread here
British Journal of Occupational Therapy
Energy management education and occupation-related outcomes in adults with chronic diseases: A scoping review by Farragher et al.
The authors did a systematic search of studies energy management education (EME) in various chronic diseases. They conclude that EME has been found to improve outcomes in several studies in multiple sclerosis but that in other illnesses, the evidence is limited and inconclusive. There is a section on CFS where the PACE trial and its limitations are briefly mentioned.
Article here Thread here
......................
Advocacy
UK Priority Setting Partnership facilitated by the James Lind Alliance
This was announced at the CMRC conference last month.
The aim of the project is to identify research priorities for future funding.
Applications from patients, carers and professionals are invited to join the steering group, and close on Monday 20th April at 5pm.
Details here Thread here
USA The EmPOWER M.E. Roundtable online forum - "Navigating Public and Private Disability Insurance with ME/CFS" - is scheduled for Monday, April 20th at 1pm ET. Please register now to hear legal and medical experts share advice on applying, appealing, and documenting your case for Public and Private Disability Insurance with ME/CFS.
Register here Thread here
.....................
Fundraising
David Tuller - see above.
University of Oxford – Understanding the causes of ME/CFS. MEA article describes the planned project, led by Dr Karl Morten, which is crowdfunding for projects in three European centres. '...the recent identification of high levels of L-form bacteria in the blood of ME/CFS patients suggests a compromised immune system could be a biological cause of the illness...'
MEA article here Donate here Thread here
.......................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 20th April 2020
News
Open Medicine Foundation "OMF Adds a Fourth ME/CFS Collaborative Research Center"
The center is at CHU Sainte-Justine/Université de Montréal in Québec, Canada and directed by Dr. Alain Moreau. The research team will be focusing on causes and diagnostics.
Announcement here Thread here
Europe The advocacy group of Evelien Van Den Brink and Francis Martin now has an official name: European ME Coalition (EMEC). They have also created a website that provides an overview of their advocacy campaigns. It is still possible to sign their petition asking for more biomedical ME research in Europe.
Website here Thread here
.....................
Covid-19 and ME
UK Opposition to Oxford Health NHS Foundation Trust: “Coping with Coronavirus: Fatigue”
Physios for ME have written a letter, addressed to the Chief Executive of the Trust and signed by health professionals and representatives of patient organisations. The letter asks for immediate withdrawal of a leaflet called 'Coping with the Coronavirus', produced by Oxford NHS Psychological Response group, and offers their own document, currently in preparation, as a replacement.
The leaflet, which advised the CBT/GET approach for those suffering post viral fatigue following Covid-19 infection, has now been withdrawn.
Physios for ME article with link to letter here Oxford NHS document here Thread here
Trial by Error by David Tuller
"My Follow-Up Freedom-of Information Request to Oxford Health"
As Oxford Health NHS Foundation Trust removed their pamphlet, Tuller has sent them an additional FOI request for documentation in connection to that decision.
Article here Thread here
UK ME Association Free leaflet "Coronavirus and Welfare Benefits" An update from the MEA Welfare Benefits Advisor, Anne Innes.
Article with link to leaflet here Thread here
UK - The Guardian "Disabled people left off coronavirus vulnerable list go without food"
ME patients mentioned as one of several groups not being included on the UK government's list of those vulnerable to coronavirus. As a consequence they are not being prioritised by supermarkets for online delivery.
Article here Thread here
UK - The Guardian "COVID lockdown opening up world for people with disabilities"
As many people currently are confined to their homes, virtual solutions for participation increases. This increases accessibility also for disabled people. Article includes the story of severe ME sufferer Paula Knight who now could join a concert from her bedroom.
Article here Thread here
....................
Articles, videos, resources ...
Broken Battery "The PACE trial - Part 2: Harm"
Another excellent video from forum member Adam pwme on the harm caused by the PACE trial. Includes quotes and clips with experts, patients and politicians on exercise and ME. Duration 5.50 minutes
Thread with video here
UK Sheffeld ME & Fibromyalgia Group
"Gut Microbes in Health and Disease"
Professor Simon Carding, expert in Mucosal Immunology and ME researcher, was the guest speaker at the online spring event this week. Duration 1hr 12 min.
You Tube video here Thread here
USA The transcript of the CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call from Feb. 6, 2020, is now available.
Transcript (PDF) here Thread here
USA Medscape has provided a new Continuing Medical Education (CME) course on ME/CFS. It is called “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Case-Based Learning Module” and authored by Dr. Stephen J. Gluckman. Medical professionals can earn credits by completing the course.
Article here Thread here
Trial by Error by David Tuller
"More on the Mahana Mess…"
A further letter tto one of the gastroenterologists listed as a science adviser to Mahana Therapeutics with questions about their IBS treatment claims.
Article here Thread here
....................
Biomedical research
Journal of Translational Medicine
"Altered muscle membrane potential and redox status differentiates two subgroups of patients with chronic fatigue syndrome" by Jammes et al
In this French study of 72 ME/CFS patients, 39 had marked M-wave alterations during and after exercise. Plasma levels of several chemicals were measured and found to differ between the two groups. The authors suggest that measurement of ORP (oxidation-reduction potential) may help to improve the diagnosis of ME/CFS.
Paper here Thread here
Immunohorizons
"Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in ME/CFS" by Schreiner et al.
In vitro experiments used serum from small samples of ME/CFS patients and controls. The abstract concludes: 'HHV-6 reactivation in ME/CFS patients activates a multisystem, proinflammatory, cell danger response that protects against certain RNA and DNA virus infections but comes at the cost of mitochondrial fragmentation and severely compromised energy metabolism.'
Paper here Thread here
Metabolites
Review article "Metabolomics in Central Sensitivity Syndromes" by Miller et al.
The authors list many unexplained syndromes, most of which include pain, and including CFS, as Central Sensitivity Syndromes. The article summarises some of the biomedical findings for each condition and concludes that so far no biomarker has been found for any of them, but biochemical differences are being found.
Article here Thread here
ME/CFS Research Review
"The best evidence yet that immune system problems can cause ME/CFS?"
Simon McGrath's commentary on the recently published paper: 'Human Leukocyte Antigen alleles associated with ME/CFS' by Fluge, Mella et al.
McGrath says 'This new research is easily the best study yet of HLA alleles (gene variants) in ME/CFS. It finds links between at alleles of least two HLA genes and ME/CFS...' and gives a clear explanation of what this means.
Article here Thread here
......................
Other research
Fatigue: biomedicine, health & behavior
"Patient experiences and the psychosocial benefits of group aquatic exercise to reduce symptoms of ME/CFS: a pilot study" by Broadbent et al.
This Australian team investigated the experience of self-paced aquatic exercise in 11 patients with ME/CFS. The analysis found that group aquatic exercises reduced social isolation and was enjoyable without exacerbating symptoms. The forum thread includes a discussion of different kinds of exercise regimes in ME/CFS.
Article here Thread here
.....................
Advocacy
UK #MillionsMissing #MEAction are organising a video. They have written a script and are inviting participation by submitting a video of yourself reading a line of the script. Deadline Monday 27th April.
Thread with details here
New Zealand For International ME/CFS Awareness Day on the 12th of May, MECFS Canterbury is planning to release a video showing the public that the level 4 "Lockdown" is what many people with ME/CFS have been living through for years due to being house or bed bound.
Thread with details of how to contribute here
New Zealand ME Awareness NZ survey: "2020 Survey - Living with ME in NZ".
'We hope you will be able to participate. We want your story of living with ME included in the results. We need to let the NZ government know about some of the realities of life with ME!'
Thread with link to survey here
USA This year's ME/CFS Advocacy Week (April 21-26) may be almost over but it's not too late to contact your senators and your representative. A recent press release from Solve ME/CFS warns that the COVID-19 pandemic may greatly increase the number of ME/CFS patients and urges Congress to increase ME/CFS research funding.
Details here Thread here
....................
Fundraising
Berkeley crowdfunding for David Tuller to continue his work on ME, CFS, MUS and related issues for the next six months has reached $29,500 of the $40,000 goal. The closing date for donations is May 04, at 11:59 PM PDT.
Donate here Thread here
.....................
S4ME social media: Facebook, Twitter and You Tube
News
Open Medicine Foundation "OMF Adds a Fourth ME/CFS Collaborative Research Center"
The center is at CHU Sainte-Justine/Université de Montréal in Québec, Canada and directed by Dr. Alain Moreau. The research team will be focusing on causes and diagnostics.
Announcement here Thread here
Europe The advocacy group of Evelien Van Den Brink and Francis Martin now has an official name: European ME Coalition (EMEC). They have also created a website that provides an overview of their advocacy campaigns. It is still possible to sign their petition asking for more biomedical ME research in Europe.
Website here Thread here
.....................
Covid-19 and ME
UK Opposition to Oxford Health NHS Foundation Trust: “Coping with Coronavirus: Fatigue”
Physios for ME have written a letter, addressed to the Chief Executive of the Trust and signed by health professionals and representatives of patient organisations. The letter asks for immediate withdrawal of a leaflet called 'Coping with the Coronavirus', produced by Oxford NHS Psychological Response group, and offers their own document, currently in preparation, as a replacement.
The leaflet, which advised the CBT/GET approach for those suffering post viral fatigue following Covid-19 infection, has now been withdrawn.
Physios for ME article with link to letter here Oxford NHS document here Thread here
Trial by Error by David Tuller
"My Follow-Up Freedom-of Information Request to Oxford Health"
As Oxford Health NHS Foundation Trust removed their pamphlet, Tuller has sent them an additional FOI request for documentation in connection to that decision.
Article here Thread here
UK ME Association Free leaflet "Coronavirus and Welfare Benefits" An update from the MEA Welfare Benefits Advisor, Anne Innes.
Article with link to leaflet here Thread here
UK - The Guardian "Disabled people left off coronavirus vulnerable list go without food"
ME patients mentioned as one of several groups not being included on the UK government's list of those vulnerable to coronavirus. As a consequence they are not being prioritised by supermarkets for online delivery.
Article here Thread here
UK - The Guardian "COVID lockdown opening up world for people with disabilities"
As many people currently are confined to their homes, virtual solutions for participation increases. This increases accessibility also for disabled people. Article includes the story of severe ME sufferer Paula Knight who now could join a concert from her bedroom.
Article here Thread here
....................
Articles, videos, resources ...
Broken Battery "The PACE trial - Part 2: Harm"
Another excellent video from forum member Adam pwme on the harm caused by the PACE trial. Includes quotes and clips with experts, patients and politicians on exercise and ME. Duration 5.50 minutes
Thread with video here
UK Sheffeld ME & Fibromyalgia Group
"Gut Microbes in Health and Disease"
Professor Simon Carding, expert in Mucosal Immunology and ME researcher, was the guest speaker at the online spring event this week. Duration 1hr 12 min.
You Tube video here Thread here
USA The transcript of the CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call from Feb. 6, 2020, is now available.
Transcript (PDF) here Thread here
USA Medscape has provided a new Continuing Medical Education (CME) course on ME/CFS. It is called “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Case-Based Learning Module” and authored by Dr. Stephen J. Gluckman. Medical professionals can earn credits by completing the course.
Article here Thread here
Trial by Error by David Tuller
"More on the Mahana Mess…"
A further letter tto one of the gastroenterologists listed as a science adviser to Mahana Therapeutics with questions about their IBS treatment claims.
Article here Thread here
....................
Biomedical research
Journal of Translational Medicine
"Altered muscle membrane potential and redox status differentiates two subgroups of patients with chronic fatigue syndrome" by Jammes et al
In this French study of 72 ME/CFS patients, 39 had marked M-wave alterations during and after exercise. Plasma levels of several chemicals were measured and found to differ between the two groups. The authors suggest that measurement of ORP (oxidation-reduction potential) may help to improve the diagnosis of ME/CFS.
Paper here Thread here
Immunohorizons
"Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in ME/CFS" by Schreiner et al.
In vitro experiments used serum from small samples of ME/CFS patients and controls. The abstract concludes: 'HHV-6 reactivation in ME/CFS patients activates a multisystem, proinflammatory, cell danger response that protects against certain RNA and DNA virus infections but comes at the cost of mitochondrial fragmentation and severely compromised energy metabolism.'
Paper here Thread here
Metabolites
Review article "Metabolomics in Central Sensitivity Syndromes" by Miller et al.
The authors list many unexplained syndromes, most of which include pain, and including CFS, as Central Sensitivity Syndromes. The article summarises some of the biomedical findings for each condition and concludes that so far no biomarker has been found for any of them, but biochemical differences are being found.
Article here Thread here
ME/CFS Research Review
"The best evidence yet that immune system problems can cause ME/CFS?"
Simon McGrath's commentary on the recently published paper: 'Human Leukocyte Antigen alleles associated with ME/CFS' by Fluge, Mella et al.
McGrath says 'This new research is easily the best study yet of HLA alleles (gene variants) in ME/CFS. It finds links between at alleles of least two HLA genes and ME/CFS...' and gives a clear explanation of what this means.
Article here Thread here
......................
Other research
Fatigue: biomedicine, health & behavior
"Patient experiences and the psychosocial benefits of group aquatic exercise to reduce symptoms of ME/CFS: a pilot study" by Broadbent et al.
This Australian team investigated the experience of self-paced aquatic exercise in 11 patients with ME/CFS. The analysis found that group aquatic exercises reduced social isolation and was enjoyable without exacerbating symptoms. The forum thread includes a discussion of different kinds of exercise regimes in ME/CFS.
Article here Thread here
.....................
Advocacy
UK #MillionsMissing #MEAction are organising a video. They have written a script and are inviting participation by submitting a video of yourself reading a line of the script. Deadline Monday 27th April.
Thread with details here
New Zealand For International ME/CFS Awareness Day on the 12th of May, MECFS Canterbury is planning to release a video showing the public that the level 4 "Lockdown" is what many people with ME/CFS have been living through for years due to being house or bed bound.
Thread with details of how to contribute here
New Zealand ME Awareness NZ survey: "2020 Survey - Living with ME in NZ".
'We hope you will be able to participate. We want your story of living with ME included in the results. We need to let the NZ government know about some of the realities of life with ME!'
Thread with link to survey here
USA This year's ME/CFS Advocacy Week (April 21-26) may be almost over but it's not too late to contact your senators and your representative. A recent press release from Solve ME/CFS warns that the COVID-19 pandemic may greatly increase the number of ME/CFS patients and urges Congress to increase ME/CFS research funding.
Details here Thread here
....................
Fundraising
Berkeley crowdfunding for David Tuller to continue his work on ME, CFS, MUS and related issues for the next six months has reached $29,500 of the $40,000 goal. The closing date for donations is May 04, at 11:59 PM PDT.
Donate here Thread here
.....................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 27th April 2020
News
Europe On Thursday, April 30th, the Committee on Petitions of the European Parliament (PETI) adopted the Motion for a Resolution on additional funding for biomedical research on Myalgic Encephalomyelitis. All 30 votes were in favour of the resolution, there were no abstentions. The European parliament has issued a press release about the vote titled: "Underfunding of biomedical research into Myalgic Encephalomyelitis is unjustified, say MEPs."
Press release here Thread here
UK - Retirement of the Countess of Mar
"Stalwart champion of the ME community retires after distinguished parliamentary career" by Dr Charles Shepherd, ME Association.
Margaret, Countess of Mar retired from the House of Lords on 1st May. Lady Mar set up Forward ME in 2008 and has led the group bringing together ME organisations and politicians since then. 'Her chairmanship of the Forward-ME Group, her constant willingness to be involved with promoting biomedical research, improving medical education, asking parliamentary questions and securing the PACE trial debate, and helping with difficult individual cases. Above all just being there to give sage advice when needed.'
MEA article here Thread here
...................
Covid-19 and ME
Mady Hornig, Columbia University
"What does COVID-19 portend for ME/CFS?"
Open letter from Mady Hornig MD shared via Solve CFS. "Investment in research into the association of SARS-Cov-2 infection with ME/CFS has never been more timely or well-leveraged"
Open letter here Thread here
UK ME Association
"Covid-19 and Post-viral Fatigue Syndrome" by Dr Charles Shepherd
After an introduction highlighting reports of PVFS after covid-19 infection,
this 8 page leaflet explains the symptoms of PVFS and ME/CFS, and management of convalescence using pacing. Topics include nutrition, sleep, returning to work and finances.
Article with link to leaflet here Thread here
Sweden "ME/CFS can increase dramatically after the pandemic"
MD Björn Bragée with an opinion piece in a Swedish medical news site where he advice doctors to be alert of patients developing ME post Covid-19.
Thread with link to translation here
UK - The Guardian "Lingering and painful: the long and unclear road to coronavirus recovery"
Article includes statements from Dr. James Gill and Prof. Carmine Pariante worrying there might be an increase of chronic fatigue syndrome due to Covid-19.
Article here Thread here
UK - The Daily Telegraph
"Coronavirus could cause secondary illnesses including chronic fatigue syndrome, experts warn - New medical papers suggest the contagion can get deep into our vascular system and even our brains" by Sarah Newey
Concludes with a comment from Prof Simon Wessely “We don’t know whether Sars-Cov-2 does or does not [cause CFS/ME]. But we need to set up cohort studies of those infected by this agent as soon as possible, and follow people up for the short, medium and long term.”
Article here Thread here
.................
Trial by Error by David Tuller
Another Nudge to Mahana's Gasteroenterology Advisers
Article here Thread here
Oxford Health's Response to My Freedom of Information Request
A response from the Oxford NHS Foundation Trust about their pamphlet on coronavirus and fatigue, which got pulled. They won't tell who's behind the Psychosocial Response Group that wrote the pamphlet and says "it has been taken down from trust sites for further review".
Response here Thread here
Norway’s Proposed Lightning Process Trial
David Tuller reports that Live Landmark, a long-time LP practitioner and proponent, has proposed an LP study affiliated to her enrolment in a graduate program in psychology. It has financial support but not yet ethical approval. Tuller links to and article by Nina Steinkopf, a blogger and activist who has been tracking the situation.
Article here Thread here
..................
Articles, videos, other news...
Norway ME-conference in Stavanger this autumn will be postponed till September 2021. It will keep the same program with among others Dr. Ian Lipkin and Dr. Ron Davis as lecturers.
Website here Thread here
Medscape CME (Continuing Medical Education) "ME/CFS: A Case-Based Learning Module" by Stephen Gluckman, MD.
Aimed at primary care physicians, nurses and other health practitioners, this module covers diagnosis, monitoring and 'evidence based approaches that alleviate/eliminate ME/CFS targeted symptoms.'
Thread with link here
MSD Manual (US): "Chronic fatigue syndrome" by Gluckman updated and revised April 2020
Despite being by the same author this takes a different approach, recommending CBT and GET treatments.
Thread with link here
Blog "Untangling the MUS web: How badly have UK proponents of Medically Unexplained Symptoms (MUS) misled the medical community?" This anonymous Facebook post published by Opposing MEGA takes a critical view on the concept of MUS and the scientific research behind it.
Article here Facebook post here Thread here
...................
Research News
Open Medicine Foundation (OMF) just announced three new projects as part of #MayMomentum, their fundraising campaign in solidarity with May 12th ME/CFS International Awareness Day. From their website: "OMF is funding two new pilot treatment trials, Mestinon and Kynurenine, and a study to track ICU patients with COVID-19, with the expectation that some may develop ME/CFS."
Announcement here Thread here
Science The scientific journal ‘Medicina’ from publisher MDPI will issue a special issue called "ME/CFS: Causes, Clinical Features and Diagnosis". Guest Editor is Prof. Derek Pheby. Deadline for manuscript submissions is 31 December 2020. The Article Processing Charge (APC) for publication in this open-access journal is 1500 CHF (Swiss Francs).
Announcement here Thread here
.....................
Biomedical Research
Frontiers in Medicine - Family Medicine and Primary Care
"Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study" by Rekeland, Mella, Fluge et al
In a Phase II open label study with no control group, 40 patients with ME/CFS were treated with cyclophosphamide. There was some overall improvement in scores on fatigue and physical function questionnaires and step counts, with a higher response rate in 12 patients with a particular genetic variant. The authors caution that this is a preliminary study and no conclusion should be drawn until a large double blind study has been carried out. The drug has serious side effects and should only be used in ME/CFS as part of a clinical trial.
Paper here Thread here
PLOS ONE
"A systematic review of neurological impairments in ME/CFS using neuroimaging techniques" by Maksoud, Marshall-Gradisnik et al.
55 studies were included in this review. All papers assessed neurological or cognitive differences using neuroimaging techniques. Differences were found in adult ME/CFS patients compared with healthy controls, but were not consistent across studies.
Review here Thread here
Ohio State University Student thesis
"The Role of EBV-dUTPase in Modulating Neuro-Immune Dysfunction Associated with ME/CFS" by Hasik.
In experiments on mice treated with EBV-dUTPase, upregulation of some of mRNA was found brain tissue. The author suggests this might be associated with some ME symptoms such as pain, but further research is needed.
Thesis here Thread here
...................
Other Research
UK Centre for Welfare Reform
"Energy Impairment and Disability Inclusion - TOWARDS AN ADVOCACY MOVEMENT FOR ENERGY LIMITING CHRONIC ILLNESS" by Catherine Hale et al.
A 90 page report of a patient led study that included a survey and focus group. 'We found compelling evidence that there is common experience and shared knowledge among people with chronic illness that is not heard or represented beyond our online networks, despite being a large subsection of the disabled population. [...] we propose strategies for amplifying our voice going forward.'
Report here Thread here
Fatigue: Biomedicine, Health & Behavior
"Solving the ME/CFS criteria and name conundrum: the aftermath of IOM" by Jason & Johnson.
In this paper Leonard Jason and Madeline Johnson from DePaul University, Chicago reflect on diagnostic criteria for ME/CFS and the recommendations in the 2015 report by the Institute of Medicine. The authors propose to develop a consensus on a research case definition by all key ME/CFS stakeholders.
Article here Thread here
Unpublished
Dr. Hng has published a survey on doctors' knowledge and understanding of ME. 44 questionnaires were returned and analyzed. While a majority of doctors indicated have seen some ME patients, only 27% of respondents reported having previously received formal teaching on ME. 89% of respondents did not know how to diagnose ME. 93% did not feel confident dealing with ME patients
Survey here Thread here
......................
Surveys
Norway The Norwegian ME Association has a short online survey on ME patient's experience with alternative treatments.
Survey here Thread here
...................
Advocacy
Germany As street protests had to be cancelled due to the COVID-19 outbreak, MillionsMissing Germany is announcing a new campaign: postcards to the Health Minister Jens Spahn. The campaign is supported by all German patient organizations - the German ME/CFS Society, Fatigatio e.V. and the Lost Voices Foundation.
Announcement here Thread here
USA Emily Taylor of Solve M.E. has posted results from this year's Solve ME/CFS Advocacy Day. There's also a "thank you" video that you can share with your Congress member via twitter.
Video here Thread here
#MEAction UK appeal to NICE
'Thousands add messages to 6m long card'. A response to the NICE decision not to add a warning about the dangers of GET to the current ME/CFS guideline. NICE has delayed all guideline updates to focus on Covid-19. 'We initially delayed sending this card, so as to allow NICE time to focus on their response to the pandemic. However, as increasing numbers of people with COVID-19 are reporting post-viral complications, it is more important than ever that NICE read the messages from our community.'
#MEAction UK article here Thread here
..................
Fundraising news
UC Berkeley crowdfunding for David Tuller's work on ME, CFS, MUS and related conditions for the six months July to December 2020, has achieved its target $40,000. Ends on May 04, at 11:59 PM PDT.
Donate here Thread here
..................
S4ME social media: Facebook, Twitter and You Tube
News
Europe On Thursday, April 30th, the Committee on Petitions of the European Parliament (PETI) adopted the Motion for a Resolution on additional funding for biomedical research on Myalgic Encephalomyelitis. All 30 votes were in favour of the resolution, there were no abstentions. The European parliament has issued a press release about the vote titled: "Underfunding of biomedical research into Myalgic Encephalomyelitis is unjustified, say MEPs."
Press release here Thread here
UK - Retirement of the Countess of Mar
"Stalwart champion of the ME community retires after distinguished parliamentary career" by Dr Charles Shepherd, ME Association.
Margaret, Countess of Mar retired from the House of Lords on 1st May. Lady Mar set up Forward ME in 2008 and has led the group bringing together ME organisations and politicians since then. 'Her chairmanship of the Forward-ME Group, her constant willingness to be involved with promoting biomedical research, improving medical education, asking parliamentary questions and securing the PACE trial debate, and helping with difficult individual cases. Above all just being there to give sage advice when needed.'
MEA article here Thread here
...................
Covid-19 and ME
Mady Hornig, Columbia University
"What does COVID-19 portend for ME/CFS?"
Open letter from Mady Hornig MD shared via Solve CFS. "Investment in research into the association of SARS-Cov-2 infection with ME/CFS has never been more timely or well-leveraged"
Open letter here Thread here
UK ME Association
"Covid-19 and Post-viral Fatigue Syndrome" by Dr Charles Shepherd
After an introduction highlighting reports of PVFS after covid-19 infection,
this 8 page leaflet explains the symptoms of PVFS and ME/CFS, and management of convalescence using pacing. Topics include nutrition, sleep, returning to work and finances.
Article with link to leaflet here Thread here
Sweden "ME/CFS can increase dramatically after the pandemic"
MD Björn Bragée with an opinion piece in a Swedish medical news site where he advice doctors to be alert of patients developing ME post Covid-19.
Thread with link to translation here
UK - The Guardian "Lingering and painful: the long and unclear road to coronavirus recovery"
Article includes statements from Dr. James Gill and Prof. Carmine Pariante worrying there might be an increase of chronic fatigue syndrome due to Covid-19.
Article here Thread here
UK - The Daily Telegraph
"Coronavirus could cause secondary illnesses including chronic fatigue syndrome, experts warn - New medical papers suggest the contagion can get deep into our vascular system and even our brains" by Sarah Newey
Concludes with a comment from Prof Simon Wessely “We don’t know whether Sars-Cov-2 does or does not [cause CFS/ME]. But we need to set up cohort studies of those infected by this agent as soon as possible, and follow people up for the short, medium and long term.”
Article here Thread here
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Trial by Error by David Tuller
Another Nudge to Mahana's Gasteroenterology Advisers
Article here Thread here
Oxford Health's Response to My Freedom of Information Request
A response from the Oxford NHS Foundation Trust about their pamphlet on coronavirus and fatigue, which got pulled. They won't tell who's behind the Psychosocial Response Group that wrote the pamphlet and says "it has been taken down from trust sites for further review".
Response here Thread here
Norway’s Proposed Lightning Process Trial
David Tuller reports that Live Landmark, a long-time LP practitioner and proponent, has proposed an LP study affiliated to her enrolment in a graduate program in psychology. It has financial support but not yet ethical approval. Tuller links to and article by Nina Steinkopf, a blogger and activist who has been tracking the situation.
Article here Thread here
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Articles, videos, other news...
Norway ME-conference in Stavanger this autumn will be postponed till September 2021. It will keep the same program with among others Dr. Ian Lipkin and Dr. Ron Davis as lecturers.
Website here Thread here
Medscape CME (Continuing Medical Education) "ME/CFS: A Case-Based Learning Module" by Stephen Gluckman, MD.
Aimed at primary care physicians, nurses and other health practitioners, this module covers diagnosis, monitoring and 'evidence based approaches that alleviate/eliminate ME/CFS targeted symptoms.'
Thread with link here
MSD Manual (US): "Chronic fatigue syndrome" by Gluckman updated and revised April 2020
Despite being by the same author this takes a different approach, recommending CBT and GET treatments.
Thread with link here
Blog "Untangling the MUS web: How badly have UK proponents of Medically Unexplained Symptoms (MUS) misled the medical community?" This anonymous Facebook post published by Opposing MEGA takes a critical view on the concept of MUS and the scientific research behind it.
Article here Facebook post here Thread here
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Research News
Open Medicine Foundation (OMF) just announced three new projects as part of #MayMomentum, their fundraising campaign in solidarity with May 12th ME/CFS International Awareness Day. From their website: "OMF is funding two new pilot treatment trials, Mestinon and Kynurenine, and a study to track ICU patients with COVID-19, with the expectation that some may develop ME/CFS."
Announcement here Thread here
Science The scientific journal ‘Medicina’ from publisher MDPI will issue a special issue called "ME/CFS: Causes, Clinical Features and Diagnosis". Guest Editor is Prof. Derek Pheby. Deadline for manuscript submissions is 31 December 2020. The Article Processing Charge (APC) for publication in this open-access journal is 1500 CHF (Swiss Francs).
Announcement here Thread here
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Biomedical Research
Frontiers in Medicine - Family Medicine and Primary Care
"Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study" by Rekeland, Mella, Fluge et al
In a Phase II open label study with no control group, 40 patients with ME/CFS were treated with cyclophosphamide. There was some overall improvement in scores on fatigue and physical function questionnaires and step counts, with a higher response rate in 12 patients with a particular genetic variant. The authors caution that this is a preliminary study and no conclusion should be drawn until a large double blind study has been carried out. The drug has serious side effects and should only be used in ME/CFS as part of a clinical trial.
Paper here Thread here
PLOS ONE
"A systematic review of neurological impairments in ME/CFS using neuroimaging techniques" by Maksoud, Marshall-Gradisnik et al.
55 studies were included in this review. All papers assessed neurological or cognitive differences using neuroimaging techniques. Differences were found in adult ME/CFS patients compared with healthy controls, but were not consistent across studies.
Review here Thread here
Ohio State University Student thesis
"The Role of EBV-dUTPase in Modulating Neuro-Immune Dysfunction Associated with ME/CFS" by Hasik.
In experiments on mice treated with EBV-dUTPase, upregulation of some of mRNA was found brain tissue. The author suggests this might be associated with some ME symptoms such as pain, but further research is needed.
Thesis here Thread here
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Other Research
UK Centre for Welfare Reform
"Energy Impairment and Disability Inclusion - TOWARDS AN ADVOCACY MOVEMENT FOR ENERGY LIMITING CHRONIC ILLNESS" by Catherine Hale et al.
A 90 page report of a patient led study that included a survey and focus group. 'We found compelling evidence that there is common experience and shared knowledge among people with chronic illness that is not heard or represented beyond our online networks, despite being a large subsection of the disabled population. [...] we propose strategies for amplifying our voice going forward.'
Report here Thread here
Fatigue: Biomedicine, Health & Behavior
"Solving the ME/CFS criteria and name conundrum: the aftermath of IOM" by Jason & Johnson.
In this paper Leonard Jason and Madeline Johnson from DePaul University, Chicago reflect on diagnostic criteria for ME/CFS and the recommendations in the 2015 report by the Institute of Medicine. The authors propose to develop a consensus on a research case definition by all key ME/CFS stakeholders.
Article here Thread here
Unpublished
Dr. Hng has published a survey on doctors' knowledge and understanding of ME. 44 questionnaires were returned and analyzed. While a majority of doctors indicated have seen some ME patients, only 27% of respondents reported having previously received formal teaching on ME. 89% of respondents did not know how to diagnose ME. 93% did not feel confident dealing with ME patients
Survey here Thread here
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Surveys
Norway The Norwegian ME Association has a short online survey on ME patient's experience with alternative treatments.
Survey here Thread here
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Advocacy
Germany As street protests had to be cancelled due to the COVID-19 outbreak, MillionsMissing Germany is announcing a new campaign: postcards to the Health Minister Jens Spahn. The campaign is supported by all German patient organizations - the German ME/CFS Society, Fatigatio e.V. and the Lost Voices Foundation.
Announcement here Thread here
USA Emily Taylor of Solve M.E. has posted results from this year's Solve ME/CFS Advocacy Day. There's also a "thank you" video that you can share with your Congress member via twitter.
Video here Thread here
#MEAction UK appeal to NICE
'Thousands add messages to 6m long card'. A response to the NICE decision not to add a warning about the dangers of GET to the current ME/CFS guideline. NICE has delayed all guideline updates to focus on Covid-19. 'We initially delayed sending this card, so as to allow NICE time to focus on their response to the pandemic. However, as increasing numbers of people with COVID-19 are reporting post-viral complications, it is more important than ever that NICE read the messages from our community.'
#MEAction UK article here Thread here
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Fundraising news
UC Berkeley crowdfunding for David Tuller's work on ME, CFS, MUS and related conditions for the six months July to December 2020, has achieved its target $40,000. Ends on May 04, at 11:59 PM PDT.
Donate here Thread here
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