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News in Brief - May 2022
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Week beginning 2nd May 2022
News, articles and advocacy
USA #MEAction met with the Office of Disability Employment Policy (ODEP), part of the U.S. Department of Labor (DOL), to present on community issues affecting people with ME and Long COVID and to offer policy recommendations.
Article here Thread here
UK Action for ME "Shaping our future together: our call for a national strategy for M.E." A 5 year plan including patient information and support, advocacy and research support and funding.
Article here Thread here
AfME's spring digital magazine is available. 40 pages including research and support.
Magazine here Thread here
UK Forward ME has published brief minutes of its steering group, including some changes in representatives, notes on discussions with the government Department of Health and Social Care, and a survey comparing UK chronic disease charities showing much lower ME organisations' funds.
Minutes here Thread here
ME/CFS Skeptic
The dark psychosomatic history of rheumatoid arthritis. A new blog post in the dark history of psychosomatic medicine series explores the theories of rheumatoid arthritis proposed by Franz Alexander and colleagues.
Article here Thread here
............
Long Covid news
Long COVID Physio will host the Long COVID Physio International Forum, a 2-day online forum, on September 9-10, 2022. Keynote speakers include Dr. Emma Stokes and Dr. David Putrino. Registration will open June 15, 2022.
Announcement here Thread here
Hungary
The Hungarian Academy of Sciences organized a conference on “The long COVID syndrome: Lingering illness after the pandemic”. Forum member Wyva has made a brief summary of the talks.
Thread here
Gez Medinger video interview with clinical psychologist Dr Sally Riggs
"Is There a Link Between Prior Trauma, Type A Personalities and Long Covid?"
Included in the News this week because of the concern it is causing on social media that Gez Medinger, who produces a video series on Long Covid, is getting caught up in spreading unevidenced anecodal claims that may can cause harm.
Video here (4 minutes) Twitter discussion here Thread here
Dr David Putrino Twitter thread that gives a contrasting view:'Today, we address the strained relationship between psychology, psychiatry and LongCovid. Much of this may also apply to pwME and other infection-associated chronic illnesses...'
Twitter thread here Thread here
Health Policy Partnership Can long COVID shift attitudes towards chronic fatigue?
Joe Farrington-Douglas whose mother suffered from ME, writes about Long Covid, ME and how our culture's view of chronic illness as a failure of willpower needs to change.
Article here Thread here
azcentral Why do people get long COVID? A virus called EBV, which causes multiple sclerosis, may hold cues
On research into long Covid and into the link between EBV and MS. ME is also mentioned as a disease that has been neglected. Researcher VanElzakker says it's probably going to take "some thoughtful, genuinely personalised medicine to figure out what's happening in each person".
Article here Thread here
The Guardian Opinion piece: I was a marathon runner with killer biceps - long Covid has stopped me in my tracks
Article here Thread here
..............
ME awareness month May 2022
See local, national and international organisations' websites and social media for information about events.
Thread here
Blue Sunday Tea Party 'On Sunday 15th May, people from all over the world will meet up online to chat and leave comments on each other’s posts. While doing so they’ll be enjoying tea and cake (or whatever their delicate digestive systems can manage) and donating what they can to M.E. charities and causes.'
Details here Thread here
World ME day 12th May
Solve M.E. has produced a three-part mini-series called Long Haul Voices. It features "individuals with ME/CFS and Long Covid, the experts devoted to improving their care, and the challenges surrounding these largely invisible, post-infection diseases that affect a rapidly growing population." The worldwide online launch of the series takes place on May 12, in honor of World ME Day.
Announcement here Thread here
#MEAction
On May 12th (10 am PDT/1 pm EDT/6 pm BST) there will be a global, virtual (online) event for Millions Missing.
Announcement here Thread here
World ME Alliance 'a collaborative of organisations from across the globe, is launching World ME Day on 12th May this year. This new initiative aims to bring together organisations and unify efforts to raise awareness and campaign together on Myalgic Encephalomyelitis (ME)'. The theme for the first year of World ME Day is #LearnFromME.
Details here Thread here
UK ME/CFS Priority Setting Partnership is planning to release its results on 12th May to coincide with World ME Day.
Thread here
............
Research news
UK Invest in ME Research
The 11th Biomedical Research into ME Research Colloquium 'ME and Long Covid: Emerging insights in mechanisms and complexity of post-viral fatigue' will take place on 18 - 19 May 2022 as a virtual event. This is a closed event for researchers.
The planned Clinicians Conference and International ME Conference 2022 are to be rescheduled because of the pandemic.
Colloquium details here Thread here
USA - NIH Intramural ME/CFS Study
#MEAction posted an update on the NIH Intramural ME/CFS Study that was started in 2016. Avindra Nath, principal investigator, said the study has identified consistent biological problems in ME/CFS patients.
Article here Thread here
..............
ME/CFS Research
Chest Journal
"Neurovascular Dysregulation and Acute Exercise Intolerance in ME/CFS: A Randomized, Placebo-Controlled Trial of Pyridostigmine" by Systrom et al
45 patients half placebo, half a single dose of Pyridostigmine given after an invasive cardiopulmonary exercise test (iCPET), then retested after 50 minutes.
From the abstract: Interpretation - Pyridostigmine improves peak VO2 in ME/CFS by increasing cardiac output and right ventricular filling pressures. Worsening peak exercise VO2, Qc, and RAP after placebo may signal the onset of post-exertional malaise. We suggest treatable neurovascular dysregulation underlies acute exercise intolerance in ME/CFS.
Paper here Thread here
BMJ Open
“Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey” by Vyas et al.
The authors conducted a survey using ME/CFS charities, support groups, and social media. The results indicate that ME/CFS has a large impact on quality of life, not only for patients but for their family members as well.
Article here Thread here
Internal Medicine Journal poster presentation
"Clinical improvement in patients with ME/CFS with synergistic effect of Colchicine and Spironolactone targeting inhibition of inflammasone activity" by Do Campo et al.
23 patients (19 females) with positive serology for EBV infection and ME/CFS were treated with spironolactone, with colchicine later added to the treatment plan. Patients reported some improvements, however this a clinic report, not a blinded or placebo controlled trial.
Poster here Thread here
.................
Long COVID research
Gastroenterology
"Post-acute COVID-19 is characterized by gut viral antigen persistence in inflammatory bowel diseases" by Zollner et al
Endoscopy study of 46 patients with pre-existing inflammatory bowel disease 8 or more months after Covid-19 infection found viral antigen persistence in the gut lining of those with Long Covid symptoms, and not in those without symptoms. 'The concept that viral antigen persistence instigates immune perturbation and post-acute COVID-19 requires validation in controlled clinical trials.'
Paper here Thread here
Journal of Infection and Public Health
“Post-viral mental health sequelae in infected persons associated with COVID-19 and previous epidemics and pandemics: Systematic review and meta-analysis of prevalence estimates” by Zürcher et al.
The authors conducted a systematic review of long-term health issues following major viral endemics.
Article here Thread here
.............
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
USA #MEAction met with the Office of Disability Employment Policy (ODEP), part of the U.S. Department of Labor (DOL), to present on community issues affecting people with ME and Long COVID and to offer policy recommendations.
Article here Thread here
UK Action for ME "Shaping our future together: our call for a national strategy for M.E." A 5 year plan including patient information and support, advocacy and research support and funding.
Article here Thread here
AfME's spring digital magazine is available. 40 pages including research and support.
Magazine here Thread here
UK Forward ME has published brief minutes of its steering group, including some changes in representatives, notes on discussions with the government Department of Health and Social Care, and a survey comparing UK chronic disease charities showing much lower ME organisations' funds.
Minutes here Thread here
ME/CFS Skeptic
The dark psychosomatic history of rheumatoid arthritis. A new blog post in the dark history of psychosomatic medicine series explores the theories of rheumatoid arthritis proposed by Franz Alexander and colleagues.
Article here Thread here
............
Long Covid news
Long COVID Physio will host the Long COVID Physio International Forum, a 2-day online forum, on September 9-10, 2022. Keynote speakers include Dr. Emma Stokes and Dr. David Putrino. Registration will open June 15, 2022.
Announcement here Thread here
Hungary
The Hungarian Academy of Sciences organized a conference on “The long COVID syndrome: Lingering illness after the pandemic”. Forum member Wyva has made a brief summary of the talks.
Thread here
Gez Medinger video interview with clinical psychologist Dr Sally Riggs
"Is There a Link Between Prior Trauma, Type A Personalities and Long Covid?"
Included in the News this week because of the concern it is causing on social media that Gez Medinger, who produces a video series on Long Covid, is getting caught up in spreading unevidenced anecodal claims that may can cause harm.
Video here (4 minutes) Twitter discussion here Thread here
Dr David Putrino Twitter thread that gives a contrasting view:'Today, we address the strained relationship between psychology, psychiatry and LongCovid. Much of this may also apply to pwME and other infection-associated chronic illnesses...'
Twitter thread here Thread here
Health Policy Partnership Can long COVID shift attitudes towards chronic fatigue?
Joe Farrington-Douglas whose mother suffered from ME, writes about Long Covid, ME and how our culture's view of chronic illness as a failure of willpower needs to change.
Article here Thread here
azcentral Why do people get long COVID? A virus called EBV, which causes multiple sclerosis, may hold cues
On research into long Covid and into the link between EBV and MS. ME is also mentioned as a disease that has been neglected. Researcher VanElzakker says it's probably going to take "some thoughtful, genuinely personalised medicine to figure out what's happening in each person".
Article here Thread here
The Guardian Opinion piece: I was a marathon runner with killer biceps - long Covid has stopped me in my tracks
Article here Thread here
..............
ME awareness month May 2022
See local, national and international organisations' websites and social media for information about events.
Thread here
Blue Sunday Tea Party 'On Sunday 15th May, people from all over the world will meet up online to chat and leave comments on each other’s posts. While doing so they’ll be enjoying tea and cake (or whatever their delicate digestive systems can manage) and donating what they can to M.E. charities and causes.'
Details here Thread here
World ME day 12th May
Solve M.E. has produced a three-part mini-series called Long Haul Voices. It features "individuals with ME/CFS and Long Covid, the experts devoted to improving their care, and the challenges surrounding these largely invisible, post-infection diseases that affect a rapidly growing population." The worldwide online launch of the series takes place on May 12, in honor of World ME Day.
Announcement here Thread here
#MEAction
On May 12th (10 am PDT/1 pm EDT/6 pm BST) there will be a global, virtual (online) event for Millions Missing.
Announcement here Thread here
World ME Alliance 'a collaborative of organisations from across the globe, is launching World ME Day on 12th May this year. This new initiative aims to bring together organisations and unify efforts to raise awareness and campaign together on Myalgic Encephalomyelitis (ME)'. The theme for the first year of World ME Day is #LearnFromME.
Details here Thread here
UK ME/CFS Priority Setting Partnership is planning to release its results on 12th May to coincide with World ME Day.
Thread here
............
Research news
UK Invest in ME Research
The 11th Biomedical Research into ME Research Colloquium 'ME and Long Covid: Emerging insights in mechanisms and complexity of post-viral fatigue' will take place on 18 - 19 May 2022 as a virtual event. This is a closed event for researchers.
The planned Clinicians Conference and International ME Conference 2022 are to be rescheduled because of the pandemic.
Colloquium details here Thread here
USA - NIH Intramural ME/CFS Study
#MEAction posted an update on the NIH Intramural ME/CFS Study that was started in 2016. Avindra Nath, principal investigator, said the study has identified consistent biological problems in ME/CFS patients.
Article here Thread here
..............
ME/CFS Research
Chest Journal
"Neurovascular Dysregulation and Acute Exercise Intolerance in ME/CFS: A Randomized, Placebo-Controlled Trial of Pyridostigmine" by Systrom et al
45 patients half placebo, half a single dose of Pyridostigmine given after an invasive cardiopulmonary exercise test (iCPET), then retested after 50 minutes.
From the abstract: Interpretation - Pyridostigmine improves peak VO2 in ME/CFS by increasing cardiac output and right ventricular filling pressures. Worsening peak exercise VO2, Qc, and RAP after placebo may signal the onset of post-exertional malaise. We suggest treatable neurovascular dysregulation underlies acute exercise intolerance in ME/CFS.
Paper here Thread here
BMJ Open
“Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey” by Vyas et al.
The authors conducted a survey using ME/CFS charities, support groups, and social media. The results indicate that ME/CFS has a large impact on quality of life, not only for patients but for their family members as well.
Article here Thread here
Internal Medicine Journal poster presentation
"Clinical improvement in patients with ME/CFS with synergistic effect of Colchicine and Spironolactone targeting inhibition of inflammasone activity" by Do Campo et al.
23 patients (19 females) with positive serology for EBV infection and ME/CFS were treated with spironolactone, with colchicine later added to the treatment plan. Patients reported some improvements, however this a clinic report, not a blinded or placebo controlled trial.
Poster here Thread here
.................
Long COVID research
Gastroenterology
"Post-acute COVID-19 is characterized by gut viral antigen persistence in inflammatory bowel diseases" by Zollner et al
Endoscopy study of 46 patients with pre-existing inflammatory bowel disease 8 or more months after Covid-19 infection found viral antigen persistence in the gut lining of those with Long Covid symptoms, and not in those without symptoms. 'The concept that viral antigen persistence instigates immune perturbation and post-acute COVID-19 requires validation in controlled clinical trials.'
Paper here Thread here
Journal of Infection and Public Health
“Post-viral mental health sequelae in infected persons associated with COVID-19 and previous epidemics and pandemics: Systematic review and meta-analysis of prevalence estimates” by Zürcher et al.
The authors conducted a systematic review of long-term health issues following major viral endemics.
Article here Thread here
.............
S4ME social media: Facebook, Twitter and YouTube
Last edited by a moderator:
Week beginning 9th May 2022
Post 1 of 2
UK news
NICE "NICE outlines steps needed to put ME/CFS guideline into practice"
'The NICE implementation statement highlights the areas that will have the most need to be considered by local commissioners and providers to comply with the recommendations in the guideline.' These include ensuring the availability of experts in secondary care to provide guidance to primary care, training, early paediatric diagnosis, and the need to review funding and staffing.
Article here Implementation statement here Thread here
Priority Setting Partnership has published 11 priorities for ME/CFS research chosen with public participation from patients, carers and clinicians. Topics include biological mechanisms underlying PEM and other aspects of the disease, and some suggested avenues to pursue such as mitochondria, the immune system and the nervous system, as well as treatments and management.
Article here Thread here
Parliament
"Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Announcements - Statement made on 12 May 2022"
Secretary of State for Health and Social Care, Sajid Javid, has made a written statement. 'Today, on World ME Day, I have two announcements to make to show that the Government is committed to better care and support for people living with ME/CFS and their families... Whilst there are currently no known cures or treatments for the condition, people with ME/CFS can be supported to manage their symptoms and maximise their quality of life.'
The statement commits to working on the Priority Setting Partnership recommendations: 'To support these research priorities, I will co-chair a roundtable with my Department’s Chief Scientific Adviser, Professor Lucy Chappell, to bring together experts on ME/CFS, including people with lived experience to discuss what needs to happen next.'
'Secondly, I am announcing the Government’s intention to develop a cross-Government delivery plan on ME/CFS for England, aligning with other devolved nations as appropriate.' this refers to the new NICE guideline, the PSP and the work of the All Party Parliamentary Group on ME/CFS.
Statement here Thread here
The All Party Parliamentary Group on ME have announced a meeting on the 25th May 2022 to launch their first report titled “Rethinking ME”.
“At this reception, we will reflect on the progress being made to improve recognition and understanding of ME amongst the medical profession and other relevant professions. We will hear directly from people ME on their desire for better care and support, and the Secretary of State for Health and Social Care, the Rt Hon Sajid Javid MP, will deliver keynote remarks.” Carol Monaghan MP, Member of Parliament for Glasgow North West (copied from the ME Association)
Action for ME is preparing a template letter to send to MP's
ME Association here Action for ME here Thread here
The Times "Sajid Javid promises radical action for patients debilitated by ME" by Sean O’Neill.
'Sajid Javid has promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition”.'
Article here (paywalled) Thread here
The Times "My daughter couldn’t be saved but there’s hope for other ME patients" by Sean O'Neill
A frank and heartbreaking account of Sean O'Neill's daughter Maeve's suffering from very severe ME/CFS and her death last year at the age of 27. O'Neill contrasts the state of the art treatment and care he has had for his leukemia with the lack of care Maeve suffered. 'I believe Maeve (like many people with this illness) suffered discrimination because there is a deeply embedded prejudice about the disease which permeates all levels of medicine and beyond.' The article ends: 'For those still living with ME, the hope held out by yesterday’s announcement will make life more bearable. For my beautiful girl, it is too late.'
Article here Thread here
The Times "Relative’s suffering triggered Sajid Javid’s ME crusade"
'Sajid Javid’s radical new approach to the debilitating condition myalgic encephalomyelitis was shaped by his experience with a family member.
The health secretary told The Times yesterday that a close relative suffered with ME, which affects at least 250,000 people in the UK and for which there is no diagnostic test, universally effective treatments or cure.'
Article here Thread here
Independent "I was raised by a mother who was battling ME – it’s not just ‘being tired’, it’s a devastating, life-defining disease
Sajid Javid has finally committed to tackling the ‘incredibly disabling condition’ in a moment that campaigners and victims have been fighting to reach for decades" by Ellie Fry.
Article here Thread here
Daily Mail "Hope for 250,000 ME patients as Sajid Javid promises radical new approach to tackling the 'incredibly disabling condition'"
Reports on Javid's statement but stated incorrectly that the NICE guideline remains unpublished and GET/CBT are still recommended. This was later amended after complaints.
Article here Thread here
..................
ME Awareness Month May 2022
The World ME Alliance is providing updates on World ME Day on May 12th on its website, using the hashtag #LearnFromME.
Web page here Thread here
USA
Solve ME have a range of advocacy month events, including recording 'a discussion about the importance of sharing our stories and raising our voices to create change!'. They also make available a video of 'a training session outlining best practices for your congressional meetings', and highlights both Long Covid and ME/CFS in advocacy work with members of Congress and the CDC.
Article with links to videos here Thread here
Open Medicine Foundation
May Momentum Tuesdays a webinar series of interviews with Directors of OMF Collaborative Research Centers. Alain Moreau, PhD, talks about a test to discriminate Fibromyalgia from ME/CFS using a stress test with an arm cuff to cause PEM and microRNA profiles. Duration 35 minutes.
Video here Thread here
Author and ME sufferer Karin Alvtegen has written a Facebook post encouraging people to support OMF via the Swedish patient organisation RME.
Facebook post here Thread here
OMF shares ME sufferer Christian Godbout's well written account of the history of neglect of ME.
Article here Thread here
CDC Emerging Infections shared on Twitter a link to their information on ME/CFS International Awareness Day
Tweet here Thread here
Minneapolis, Minnesota highlighted ME & Long COVID on World ME Day on May 12th with a City Resolution with a hearing.
Video here (first 9 minutes) Thread here
UK
Physios for ME are tweeting 'Seven slides for Physios' on aspects of ME/CFS during ME awareness week. Topics include what is ME, severity levels and PEM.
First tweet here Thread here
DecodeME has published for ME Awareness week some quotes from people with ME/CFS headed "Why DecodeME Matters To People With ME/CFS"
There is also an update on progress with the research.
Article here Update here Thread here
British Medical Association
"Known unknowns and as yet medically unexplained diseases" by David Strain, chair of the BMA board of science and medical advisor to Action for ME.
In an article for Global ME Day, Dr Strain points to Long COVID as an example, like ME/CFS, of a condition where there is currently no explanation and where patients are often stigmatised. He concludes: 'As good as our medical knowledge is, as impressive as the technology we use to support us, we need to accept that we do not yet have all of the answers. When a patient presents with a condition that we cannot explain, the problem is ours, not theirs.'
Article here Thread here
Gloucestershire Live
"Elderly woman bedridden for 26 years due to ME hits out at those who call those affected lazy" Veronica Jones describes her experience of living with severe ME and being given bad advice to exercise.
Article here Thread here
Newry Democrat "Join Joan and show your support this World ME Day" Joan McPartland tells her ME story and encourages people to volunteer 'to deliver an innovative new ME VR Experience. The experience will include a 6-minute animated film telling the real-life experiences of Northern Ireland patients and family carers, delivered via a VR headset. This is allowing practitioners to get a firsthand experience of witness what someone’s life is like, living with ME.'
Article here Thread here
New Zealand
ANZMES (supported by other NZ ME organisations) had a video World ME Day event featuring talks by Prof Tate, Dr Vallings and Dr Brooks.
Video here Thread here
Otago Daily Times "Long Covid link presents an opportunity: expert" Professor Tate on his recent work on the molecular signatures shared between long covid and ME/CFS.
Article here Thread here
Radio NZ report by Patrick Hadfield (president of ME/CFS support Auckland) for Learn from ME day: "How to tackle the Long Covid threat, and how not to" describes similarities between Long Covid and ME/CFS and discusses symptoms, treatment and the need for more research.
Article here Thread here
Stuff "Here comes the long-Covid tsunami" by Dr Siouxsie Wiles describes ME/CFS and warns that there will be many more cases following Covid infection, even in those vaccinated.
Article here Thread here
Australia
Emerge Australia Emerge Australia Medical Director Dr Richard Schloeffel joined CEO Anne Wilson to answer questions about ME/CFS including symptoms, diagnosis, management, GP education and clinical guidelines.
Article with link to video here Thread here
Research panel chaired by Research Manager, Michelle Tavoletti, included Paul Fisher, Chris Armstrong, Ken Walder and Sara Ballouz, answering community questions.
Twitter summary here Thread here
Sweden Short segment about ME on a morning TV show with Jenny Lundgren from the patient organisation RME who provides general information on ME and tells about her daughter who is an ME patient. Professor Jonas Bergquist says a large part of the problem lies in the central nervous system. There are no curative treatments but some symptom treatments. He emphasises the importance of pacing and support of the patients.
TV segment here Thread here
Norway Psychologist and ME sufferer Frøydis Lilledalen has written an opinion piece for a journal about psychology. She writes about the difficult debate about ME, the narrative of aggressive patients and how patients are tone policed.
Opinion piece here Thread here
..............
Continued in post 2 below
Post 1 of 2
UK news
NICE "NICE outlines steps needed to put ME/CFS guideline into practice"
'The NICE implementation statement highlights the areas that will have the most need to be considered by local commissioners and providers to comply with the recommendations in the guideline.' These include ensuring the availability of experts in secondary care to provide guidance to primary care, training, early paediatric diagnosis, and the need to review funding and staffing.
Article here Implementation statement here Thread here
Priority Setting Partnership has published 11 priorities for ME/CFS research chosen with public participation from patients, carers and clinicians. Topics include biological mechanisms underlying PEM and other aspects of the disease, and some suggested avenues to pursue such as mitochondria, the immune system and the nervous system, as well as treatments and management.
Article here Thread here
Parliament
"Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Announcements - Statement made on 12 May 2022"
Secretary of State for Health and Social Care, Sajid Javid, has made a written statement. 'Today, on World ME Day, I have two announcements to make to show that the Government is committed to better care and support for people living with ME/CFS and their families... Whilst there are currently no known cures or treatments for the condition, people with ME/CFS can be supported to manage their symptoms and maximise their quality of life.'
The statement commits to working on the Priority Setting Partnership recommendations: 'To support these research priorities, I will co-chair a roundtable with my Department’s Chief Scientific Adviser, Professor Lucy Chappell, to bring together experts on ME/CFS, including people with lived experience to discuss what needs to happen next.'
'Secondly, I am announcing the Government’s intention to develop a cross-Government delivery plan on ME/CFS for England, aligning with other devolved nations as appropriate.' this refers to the new NICE guideline, the PSP and the work of the All Party Parliamentary Group on ME/CFS.
Statement here Thread here
The All Party Parliamentary Group on ME have announced a meeting on the 25th May 2022 to launch their first report titled “Rethinking ME”.
“At this reception, we will reflect on the progress being made to improve recognition and understanding of ME amongst the medical profession and other relevant professions. We will hear directly from people ME on their desire for better care and support, and the Secretary of State for Health and Social Care, the Rt Hon Sajid Javid MP, will deliver keynote remarks.” Carol Monaghan MP, Member of Parliament for Glasgow North West (copied from the ME Association)
Action for ME is preparing a template letter to send to MP's
ME Association here Action for ME here Thread here
The Times "Sajid Javid promises radical action for patients debilitated by ME" by Sean O’Neill.
'Sajid Javid has promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition”.'
Article here (paywalled) Thread here
The Times "My daughter couldn’t be saved but there’s hope for other ME patients" by Sean O'Neill
A frank and heartbreaking account of Sean O'Neill's daughter Maeve's suffering from very severe ME/CFS and her death last year at the age of 27. O'Neill contrasts the state of the art treatment and care he has had for his leukemia with the lack of care Maeve suffered. 'I believe Maeve (like many people with this illness) suffered discrimination because there is a deeply embedded prejudice about the disease which permeates all levels of medicine and beyond.' The article ends: 'For those still living with ME, the hope held out by yesterday’s announcement will make life more bearable. For my beautiful girl, it is too late.'
Article here Thread here
The Times "Relative’s suffering triggered Sajid Javid’s ME crusade"
'Sajid Javid’s radical new approach to the debilitating condition myalgic encephalomyelitis was shaped by his experience with a family member.
The health secretary told The Times yesterday that a close relative suffered with ME, which affects at least 250,000 people in the UK and for which there is no diagnostic test, universally effective treatments or cure.'
Article here Thread here
Independent "I was raised by a mother who was battling ME – it’s not just ‘being tired’, it’s a devastating, life-defining disease
Sajid Javid has finally committed to tackling the ‘incredibly disabling condition’ in a moment that campaigners and victims have been fighting to reach for decades" by Ellie Fry.
Article here Thread here
Daily Mail "Hope for 250,000 ME patients as Sajid Javid promises radical new approach to tackling the 'incredibly disabling condition'"
Reports on Javid's statement but stated incorrectly that the NICE guideline remains unpublished and GET/CBT are still recommended. This was later amended after complaints.
Article here Thread here
..................
ME Awareness Month May 2022
The World ME Alliance is providing updates on World ME Day on May 12th on its website, using the hashtag #LearnFromME.
Web page here Thread here
USA
Solve ME have a range of advocacy month events, including recording 'a discussion about the importance of sharing our stories and raising our voices to create change!'. They also make available a video of 'a training session outlining best practices for your congressional meetings', and highlights both Long Covid and ME/CFS in advocacy work with members of Congress and the CDC.
Article with links to videos here Thread here
Open Medicine Foundation
May Momentum Tuesdays a webinar series of interviews with Directors of OMF Collaborative Research Centers. Alain Moreau, PhD, talks about a test to discriminate Fibromyalgia from ME/CFS using a stress test with an arm cuff to cause PEM and microRNA profiles. Duration 35 minutes.
Video here Thread here
Author and ME sufferer Karin Alvtegen has written a Facebook post encouraging people to support OMF via the Swedish patient organisation RME.
Facebook post here Thread here
OMF shares ME sufferer Christian Godbout's well written account of the history of neglect of ME.
Article here Thread here
CDC Emerging Infections shared on Twitter a link to their information on ME/CFS International Awareness Day
Tweet here Thread here
Minneapolis, Minnesota highlighted ME & Long COVID on World ME Day on May 12th with a City Resolution with a hearing.
Video here (first 9 minutes) Thread here
UK
Physios for ME are tweeting 'Seven slides for Physios' on aspects of ME/CFS during ME awareness week. Topics include what is ME, severity levels and PEM.
First tweet here Thread here
DecodeME has published for ME Awareness week some quotes from people with ME/CFS headed "Why DecodeME Matters To People With ME/CFS"
There is also an update on progress with the research.
Article here Update here Thread here
British Medical Association
"Known unknowns and as yet medically unexplained diseases" by David Strain, chair of the BMA board of science and medical advisor to Action for ME.
In an article for Global ME Day, Dr Strain points to Long COVID as an example, like ME/CFS, of a condition where there is currently no explanation and where patients are often stigmatised. He concludes: 'As good as our medical knowledge is, as impressive as the technology we use to support us, we need to accept that we do not yet have all of the answers. When a patient presents with a condition that we cannot explain, the problem is ours, not theirs.'
Article here Thread here
Gloucestershire Live
"Elderly woman bedridden for 26 years due to ME hits out at those who call those affected lazy" Veronica Jones describes her experience of living with severe ME and being given bad advice to exercise.
Article here Thread here
Newry Democrat "Join Joan and show your support this World ME Day" Joan McPartland tells her ME story and encourages people to volunteer 'to deliver an innovative new ME VR Experience. The experience will include a 6-minute animated film telling the real-life experiences of Northern Ireland patients and family carers, delivered via a VR headset. This is allowing practitioners to get a firsthand experience of witness what someone’s life is like, living with ME.'
Article here Thread here
New Zealand
ANZMES (supported by other NZ ME organisations) had a video World ME Day event featuring talks by Prof Tate, Dr Vallings and Dr Brooks.
Video here Thread here
Otago Daily Times "Long Covid link presents an opportunity: expert" Professor Tate on his recent work on the molecular signatures shared between long covid and ME/CFS.
Article here Thread here
Radio NZ report by Patrick Hadfield (president of ME/CFS support Auckland) for Learn from ME day: "How to tackle the Long Covid threat, and how not to" describes similarities between Long Covid and ME/CFS and discusses symptoms, treatment and the need for more research.
Article here Thread here
Stuff "Here comes the long-Covid tsunami" by Dr Siouxsie Wiles describes ME/CFS and warns that there will be many more cases following Covid infection, even in those vaccinated.
Article here Thread here
Australia
Emerge Australia Emerge Australia Medical Director Dr Richard Schloeffel joined CEO Anne Wilson to answer questions about ME/CFS including symptoms, diagnosis, management, GP education and clinical guidelines.
Article with link to video here Thread here
Research panel chaired by Research Manager, Michelle Tavoletti, included Paul Fisher, Chris Armstrong, Ken Walder and Sara Ballouz, answering community questions.
Twitter summary here Thread here
Sweden Short segment about ME on a morning TV show with Jenny Lundgren from the patient organisation RME who provides general information on ME and tells about her daughter who is an ME patient. Professor Jonas Bergquist says a large part of the problem lies in the central nervous system. There are no curative treatments but some symptom treatments. He emphasises the importance of pacing and support of the patients.
TV segment here Thread here
Norway Psychologist and ME sufferer Frøydis Lilledalen has written an opinion piece for a journal about psychology. She writes about the difficult debate about ME, the narrative of aggressive patients and how patients are tone policed.
Opinion piece here Thread here
..............
Continued in post 2 below
Week beginning 9th May 2022
Post 2 of 2
Other news, articles and advocacy
Germany
The Budget Committee of the Bundestag today decided to provide 5 million euros for clinical research into treatment options for ME/CFS and Long Covid. The clinical studies are to be carried out at several clinics under the guidance of the Charité – Universitätsmedizin Berlin.
Article here Thread here
Trial by Error by David Tuller An Interview With Mt Sinai's David Putrino About Long Covid, ME/CFS, and Related Issues
An interview about Putrino's "background and how we began treating long Covid patients, the symptoms of post-exertional malaise, the tendency to psychologist medical conditions like long Covid and ME/CFS, etc". Duration: 30 minutes
Interview here Thread here
Norway Recovery Norge promotes stories about the alternative treatment Lightning Process. They act as a user organisation for both ME and Long Covid in research projects and toward decision makers. They claim to have started up independently of LP coaches, but patient advocate Nina E. Steinkopf provides documentation in her latest article that an LP coach was among the founders of the organisation.
Article here (in English) Thread here
USA Centers for Disease Control The Stakeholder Engagement and Communication (SEC) call on May 13 had as its guest speaker Stephen Gluckman, MD, Professor of Medicine, Perelman School of Medicine, University of Pennsylvania on "The Management Options (yes there are management options) for People with ME/CFS".
Serious concern is being expressed on social media about this talk which included misinformation about ME/CFS, including recommending CBT and graded exercise therapy.
CDC meeting announcement here Thread here
Czech Republic
A proposal to develop clinical guidelines for ME/CFS in the Czech Republic was rejected. This is what the Czechian facebook group “Klub pacientù s myalgickou encefalomyelitidou/chronicky m únavovym syndromem” reports. According to them, the rejection was due to the Czech medical society JEP, which opposed the proposal through its chairman.
Article here Thread here
Doctors with ME
Doctors with ME Director Dr. Nina Muirhead presents new findings with her co-authors for the significantly greater negative impact of ME/CFS on the quality of life of family members compared to other conditions.
Article here Thread here
CBT Watch
In the blog article Mike Scott criticizes the book ‘CBT for Long-Term Conditions and Medically Unexplained Symptoms’ by Philip Kinsella and Helen Moya.
Article here Thread here
.................
Coming Events
The European ME Alliance is organizing a Roundtable of European Stakeholders and Policymakers on ME/CFS and post Covid in the Balkans. The event will take place online on Friday 27 May 14:00 CET.
Article here Thread here
UK - The All Party Parliamentary Group on Long Covid will hold a live online panel discussion to discuss the latest updates, research and Government action on Monday 16th May at 5.30pm.
Tweet with links here Thread here
UK - The Centre of Health, Medical and Environmental Humanities
Webinar: Challenging Disbelief and Disregard in relation to Medicine, Chronic Illness and Disability, 24th May 1-3pm BST.
'This webinar brings together academics and activists... It will focus on the relationship between disbelief/disregard and energy, first in relation to chronic illness/disability that involves energy limitation, and secondly in relation to the ways in which activism and advocacy in relation to medicine, chronic illness and disability takes, and depletes, energy.' Participants include Catherine Hale from the Chronic Illness Inclusion Project.
Details here Thread here
.................
ME/CFS research
HealthCare
The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS by Vink & Vink-Niese.
The authors criticize an article in the Lancet by leading proponents of the cognitive behavioural model (CBmodel) of ME/CFS.
Article here Thread here
Frontiers in Cellular Neuroscience
"The Pathobiology of ME/CFS: The Case for Neuroglial Failure" Renz-Polster et al
Review and hypothesis article: The authors list some current biological findings in ME/CFS, and two key symptoms - PEM and decreased cerebral blood flow. They hypothesise a unifying underlying pathobiology of 'central nervous system dysfunction due to impaired or pathologically reactive neuroglia'. They support this hypothesis with a literature review, and suggest it may also apply to some cases of Long Covid.
Article here Thread here
.................
Other research
Environmental Health Perspectives
"Evaluation of a Gene–Environment Interaction of PON1 and Low-Level Nerve Agent Exposure with Gulf War Illness: A Prevalence Case–Control Study Drawn from the U.S. Military Health Survey’s National Population Sample" by Haley et al.
and in the same journal: "Invited Perspective: Causal Implications of Gene by Environment Studies Applied to Gulf War Illness".
Highlighted in a BBC article "Sarin blamed for Gulf War Illness"
Paper here Articles here and here Thread here
.................
S4ME social media: Facebook, Twitter and YouTube
Post 2 of 2
Other news, articles and advocacy
Germany
The Budget Committee of the Bundestag today decided to provide 5 million euros for clinical research into treatment options for ME/CFS and Long Covid. The clinical studies are to be carried out at several clinics under the guidance of the Charité – Universitätsmedizin Berlin.
Article here Thread here
Trial by Error by David Tuller An Interview With Mt Sinai's David Putrino About Long Covid, ME/CFS, and Related Issues
An interview about Putrino's "background and how we began treating long Covid patients, the symptoms of post-exertional malaise, the tendency to psychologist medical conditions like long Covid and ME/CFS, etc". Duration: 30 minutes
Interview here Thread here
Norway Recovery Norge promotes stories about the alternative treatment Lightning Process. They act as a user organisation for both ME and Long Covid in research projects and toward decision makers. They claim to have started up independently of LP coaches, but patient advocate Nina E. Steinkopf provides documentation in her latest article that an LP coach was among the founders of the organisation.
Article here (in English) Thread here
USA Centers for Disease Control The Stakeholder Engagement and Communication (SEC) call on May 13 had as its guest speaker Stephen Gluckman, MD, Professor of Medicine, Perelman School of Medicine, University of Pennsylvania on "The Management Options (yes there are management options) for People with ME/CFS".
Serious concern is being expressed on social media about this talk which included misinformation about ME/CFS, including recommending CBT and graded exercise therapy.
CDC meeting announcement here Thread here
Czech Republic
A proposal to develop clinical guidelines for ME/CFS in the Czech Republic was rejected. This is what the Czechian facebook group “Klub pacientù s myalgickou encefalomyelitidou/chronicky m únavovym syndromem” reports. According to them, the rejection was due to the Czech medical society JEP, which opposed the proposal through its chairman.
Article here Thread here
Doctors with ME
Doctors with ME Director Dr. Nina Muirhead presents new findings with her co-authors for the significantly greater negative impact of ME/CFS on the quality of life of family members compared to other conditions.
Article here Thread here
CBT Watch
In the blog article Mike Scott criticizes the book ‘CBT for Long-Term Conditions and Medically Unexplained Symptoms’ by Philip Kinsella and Helen Moya.
Article here Thread here
.................
Coming Events
The European ME Alliance is organizing a Roundtable of European Stakeholders and Policymakers on ME/CFS and post Covid in the Balkans. The event will take place online on Friday 27 May 14:00 CET.
Article here Thread here
UK - The All Party Parliamentary Group on Long Covid will hold a live online panel discussion to discuss the latest updates, research and Government action on Monday 16th May at 5.30pm.
Tweet with links here Thread here
UK - The Centre of Health, Medical and Environmental Humanities
Webinar: Challenging Disbelief and Disregard in relation to Medicine, Chronic Illness and Disability, 24th May 1-3pm BST.
'This webinar brings together academics and activists... It will focus on the relationship between disbelief/disregard and energy, first in relation to chronic illness/disability that involves energy limitation, and secondly in relation to the ways in which activism and advocacy in relation to medicine, chronic illness and disability takes, and depletes, energy.' Participants include Catherine Hale from the Chronic Illness Inclusion Project.
Details here Thread here
.................
ME/CFS research
HealthCare
The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS by Vink & Vink-Niese.
The authors criticize an article in the Lancet by leading proponents of the cognitive behavioural model (CBmodel) of ME/CFS.
Article here Thread here
Frontiers in Cellular Neuroscience
"The Pathobiology of ME/CFS: The Case for Neuroglial Failure" Renz-Polster et al
Review and hypothesis article: The authors list some current biological findings in ME/CFS, and two key symptoms - PEM and decreased cerebral blood flow. They hypothesise a unifying underlying pathobiology of 'central nervous system dysfunction due to impaired or pathologically reactive neuroglia'. They support this hypothesis with a literature review, and suggest it may also apply to some cases of Long Covid.
Article here Thread here
.................
Other research
Environmental Health Perspectives
"Evaluation of a Gene–Environment Interaction of PON1 and Low-Level Nerve Agent Exposure with Gulf War Illness: A Prevalence Case–Control Study Drawn from the U.S. Military Health Survey’s National Population Sample" by Haley et al.
and in the same journal: "Invited Perspective: Causal Implications of Gene by Environment Studies Applied to Gulf War Illness".
Highlighted in a BBC article "Sarin blamed for Gulf War Illness"
Paper here Articles here and here Thread here
.................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 16th May 2022
Part 1 of 2 posts
News, articles, advocacy
UK Parliament The All Party Parliamentary Group on ME will launch their report "Rethinking ME" at an event on 25th May. It will be published on the group's new website.
Website here Thread here
British Medical Journal
"NICE sets out steps NHS must take to implement ME/CFS guidelines" by Ingrid Torjesen
See last week's news for the NICE statement. This article outlines the reasons and implications of NICE making such a statement, including the major changes needed to services for people with ME/CFS.
Article here MEA copy with comment by Dr Shepherd here Thread here
UK The Times following the Health Secretary's statement in support of better research and care for ME/CFS and 3 articles in the Times we reported last week, The Times has published letters in support from Action for ME's Sonya Chowdhury and Dr Strain, and from Prof Stephen Holgate.
Thread with letters here and here
Norway Patient advocate Sissel Sunde raised money to buy 82 copies of an interview book about ME to send to recipients such as the Royal Family, politicians, the Norwegian Medical Association and many more. She and four other patient advocates met with two MPs at the Parliament on May 12th to deliver one of the books, where they discussed ME and the situation for the patient group. Sissel Sunde has written a blog post with a summary and pictures. It includes link to a google translation of the article into English.
Blog post here Thread here
USA Solve ME video of a 20 minute advocacy discussion 'about sharing our stories to advocate for change.' These discussions are being held every Friday during advocacy month.
Video here Thread here
Canada Montreal Gazette "Quebec ME/CFS patients deserve access to new long-COVID clinics, advocates say. The network of clinics will focus on long COVID and Lyme disease, but not myalgic encephalomyelitis, leaving patients with the complex illness feeling forgotten again."
Article here Thread here
New Zealand Scoop Health "What Do You Know About ME? World ME Day Asks You To Learn More" Press release from 'Learn from ME' a collaborative of NZ ME organisations. It calls for better recongition of ME, better training for health professionals and more research funding. A second article points to the increase in ME/CFS cases with Long Covid.
Articles here and here Thread here and here
Serbia
Politika, one of the larger news sites in Serbia reports on chronic fatigue as a consequence of COVID-19. Ina Ignjatović, president of the Association of Patients with Chronic Fatigue Syndrome, is quoted in the article.
Article here Thread here
YouTube Beautiful ME Island Tour - AND This Island Raises Awareness For A Chronic Illness!
Lex Play makes popular video tours from the game Animal Crossing. In this video she visits the island Malana created by ME sufferer Lisa, The Unlikely Gamer. The island raises awareness about ME, and even has a Millions Missing Display. Duration: 19 min.
Video here Thread here
Disability Arts Online Action for ME publish a groundbreaking found poem laying bare the lived experience of chronic illness
"Phoebe Boag interviews artist and poet Alec Finlay about his found poem 'descriptions: a patient-led description of ME, composed from the words of people with ME', to be published on 9 June as a paperback book".
Interview here Thread here
VeryWell Health This website which aims to provide health articles for patients has published 2 problematic articles by Adrienne Delwo. Readers can comment, though responses are not published.
"An Overview of Central Sensitivity Syndromes" presents as fact the unproven hypothesis that ME/CFS, Fibromyalgia and other conditions are explained as CSS, and claims they overlap with a list of psychiatric conditions.
"Medications & Stimulants for Chronic Fatigue" promotes the use of stimulants, including those used in hyperactivity disorders, for CFS.
Articles here and here Thread here
UK Science Media Centre director Fiona Fox has now published a book: "Beyond the Hype - The Inside Story of Media's Biggest Controversies".
There is a chapter on ME/CFS. It claims balance, but the SMC's past record on ME/CFS makes that unlikely. She will be talking about it at the Hay Festival on 5th June.
Thread here
.................
Useful Resources
UK ME Association The 2022 Clinical & Research Guide (The ‘Purple Book’) is now on sale. 'The content of this extensive guide has been completely revised and brought right up to date by Dr Charles Shepherd (Hon. Medical Adviser) and the presentation has been greatly improved by Caroline Cavey...'
The MEA funds free copies for UK health professionals on request.
Order here Thread here
ME Ireland Talk and Q&A "Diagnosis and Management of Orthostatic Intolerance in ME/CFS" 'Cardiologists Professor Frans Visser and Dr Linda van Campen explain all about Orthostatic Intolerance in ME/CFS. This webinar was organised by the Irish ME/CFS Association and the Irish ME Trust'. Duration 1 hour 9 minutes.
Video here Thread here
................
Research news
USA research funding The Congressionally Directed Medical Research Programs at the U.S. Army Medical Research and Development Command has announced a $10 million research fund that is now open to applicants studying ME/CFS.
Solve ME article with links here Thread here
UK ME/CFS Biobank has been funded by the ME Association from the start. The MEA has announced a further donation of £175,000 for the next 2 years. "The appeal to other scientists working in the field is that it can be more cost-effective to purchase high-quality samples and data rather than (or as well as) having to recruit and take samples and data themselves."
Article here Thread here
Boston USA ME/CFS Researcher Michael VanElzakker is running a brain scan study at Massachusetts General Hospital and is currently recruiting patients and healthy controls.
Thread with links here
Open Medicine Foundation
Christopher Armstrong, PhD, is the Director of the OMF Supported Melbourne ME/CFS Collaborative. He provides updates on the Ocular Motor project to monitor eye behavior in ME/CFS patients, his work into studying Post Exertion Malaise, and more.
Video here (duration 32 minutes) Thread here
USA 'Solve M.E. CEO Oved Amitay and Dr. Leonard Jason 'recently co-authored a response to a Nature article linking Epstein-Barr virus (EBV) and multiple sclerosis (MS), and the possibility that EBV vaccines and antivirals could prevent MS. Jason and Amitay note the connection between ME/CFS and EBV call for similar research into preventive vaccines for ME/CFS'.
Article with copy of letter here Thread here
Canada ICanCME 'The Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network is a national research network of researchers, clinicians, and patient partners working to advance the understanding of ME and its biomedical research'. They have a website under development and produce a monthly e-newsletter.
Website here Thread here
UK NIHR (National Institute of Health and Care Research)
"Researching long COVID: addressing a new global health challenge"
'To date, more than £50 million of government funding has been invested in long COVID research projects'. The article lists 19 funded projects including biomedical studies and testing possible treatments.
Article here Thread here
UK Medical Research Council survey
'The MRC values the role of patients and the public in research and we have commissioned a public involvement review to inform the development of our new strategy.' Survey closes 27th May.
Survey here Thread here
Public Defence by Msc Riad Hajdarevic who will provide a trial lecture on the topic: "Lessons from the Covid-19 pandemic to provide a better understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)". It takes place June 3rd at 10.15 in Oslo, Norway and it's possible to stream the event.
More information here Thread here
.................
Research
Chronic Illness
"Cytokine network analysis in a community-based pediatric sample of patients with ME/CFS" by Jason et al.
Data was from a small number of patients and controls found in a large screening study. 'Patterns of plasma cytokine networks were analyzed'.
The abstract concludes: 'Our data imply biological differences between our three participant groups, with ME/CFS and S-ME/CFS participants demonstrating an inflammatory profile. Examining co-expression of cytokines may aid in the identification of a biomarker for pediatric ME/CFS'.
Abstract published online ahead of print here Thread here
Brain Nerve
Pub Med has published short abstracts of two articles in Japanese bracketed under the heading [Patients with ME/CFS Who Have Already Visited Some Medical Institutions: The Points of Diagnosis and Treatment]
Threads here and here
University of Bristol
“Improving the identification and treatment of co-morbid depression and/or anxiety in adolescents with Chronic Fatigue Syndrome (CFS/ME)” by M. Loades.
Maria Loades published her Ph.D. Thesis on the identification and treatment of co-morbid depression and/or anxiety in adolescents with CFS/ME. Several of her studies, however, received a critical review from S4ME forum members.
Thesis here Thread here
Health Expectations
“Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community” by Ireson et al.
The authors argue that patient testimonies are vital to understanding and treating Long Covid but that patients are frequently disbelieved, and their testimonies not taken seriously leading to stigma and epistemic injustice.
Article here Thread here
Systematic Reviews
“Intimate partner violence and women living with episodic disabilities: a scoping review protocol” by Campbell et al.
CFS was included in this review as an 'episodic disability' which was defined as “chronic conditions or diseases that are unpredictable in course and fluctuate between periods and levels of functional disability and wellness.”
Article here Thread here
...............
Continued in part 2
Part 1 of 2 posts
News, articles, advocacy
UK Parliament The All Party Parliamentary Group on ME will launch their report "Rethinking ME" at an event on 25th May. It will be published on the group's new website.
Website here Thread here
British Medical Journal
"NICE sets out steps NHS must take to implement ME/CFS guidelines" by Ingrid Torjesen
See last week's news for the NICE statement. This article outlines the reasons and implications of NICE making such a statement, including the major changes needed to services for people with ME/CFS.
Article here MEA copy with comment by Dr Shepherd here Thread here
UK The Times following the Health Secretary's statement in support of better research and care for ME/CFS and 3 articles in the Times we reported last week, The Times has published letters in support from Action for ME's Sonya Chowdhury and Dr Strain, and from Prof Stephen Holgate.
Thread with letters here and here
Norway Patient advocate Sissel Sunde raised money to buy 82 copies of an interview book about ME to send to recipients such as the Royal Family, politicians, the Norwegian Medical Association and many more. She and four other patient advocates met with two MPs at the Parliament on May 12th to deliver one of the books, where they discussed ME and the situation for the patient group. Sissel Sunde has written a blog post with a summary and pictures. It includes link to a google translation of the article into English.
Blog post here Thread here
USA Solve ME video of a 20 minute advocacy discussion 'about sharing our stories to advocate for change.' These discussions are being held every Friday during advocacy month.
Video here Thread here
Canada Montreal Gazette "Quebec ME/CFS patients deserve access to new long-COVID clinics, advocates say. The network of clinics will focus on long COVID and Lyme disease, but not myalgic encephalomyelitis, leaving patients with the complex illness feeling forgotten again."
Article here Thread here
New Zealand Scoop Health "What Do You Know About ME? World ME Day Asks You To Learn More" Press release from 'Learn from ME' a collaborative of NZ ME organisations. It calls for better recongition of ME, better training for health professionals and more research funding. A second article points to the increase in ME/CFS cases with Long Covid.
Articles here and here Thread here and here
Serbia
Politika, one of the larger news sites in Serbia reports on chronic fatigue as a consequence of COVID-19. Ina Ignjatović, president of the Association of Patients with Chronic Fatigue Syndrome, is quoted in the article.
Article here Thread here
YouTube Beautiful ME Island Tour - AND This Island Raises Awareness For A Chronic Illness!
Lex Play makes popular video tours from the game Animal Crossing. In this video she visits the island Malana created by ME sufferer Lisa, The Unlikely Gamer. The island raises awareness about ME, and even has a Millions Missing Display. Duration: 19 min.
Video here Thread here
Disability Arts Online Action for ME publish a groundbreaking found poem laying bare the lived experience of chronic illness
"Phoebe Boag interviews artist and poet Alec Finlay about his found poem 'descriptions: a patient-led description of ME, composed from the words of people with ME', to be published on 9 June as a paperback book".
Interview here Thread here
VeryWell Health This website which aims to provide health articles for patients has published 2 problematic articles by Adrienne Delwo. Readers can comment, though responses are not published.
"An Overview of Central Sensitivity Syndromes" presents as fact the unproven hypothesis that ME/CFS, Fibromyalgia and other conditions are explained as CSS, and claims they overlap with a list of psychiatric conditions.
"Medications & Stimulants for Chronic Fatigue" promotes the use of stimulants, including those used in hyperactivity disorders, for CFS.
Articles here and here Thread here
UK Science Media Centre director Fiona Fox has now published a book: "Beyond the Hype - The Inside Story of Media's Biggest Controversies".
There is a chapter on ME/CFS. It claims balance, but the SMC's past record on ME/CFS makes that unlikely. She will be talking about it at the Hay Festival on 5th June.
Thread here
.................
Useful Resources
UK ME Association The 2022 Clinical & Research Guide (The ‘Purple Book’) is now on sale. 'The content of this extensive guide has been completely revised and brought right up to date by Dr Charles Shepherd (Hon. Medical Adviser) and the presentation has been greatly improved by Caroline Cavey...'
The MEA funds free copies for UK health professionals on request.
Order here Thread here
ME Ireland Talk and Q&A "Diagnosis and Management of Orthostatic Intolerance in ME/CFS" 'Cardiologists Professor Frans Visser and Dr Linda van Campen explain all about Orthostatic Intolerance in ME/CFS. This webinar was organised by the Irish ME/CFS Association and the Irish ME Trust'. Duration 1 hour 9 minutes.
Video here Thread here
................
Research news
USA research funding The Congressionally Directed Medical Research Programs at the U.S. Army Medical Research and Development Command has announced a $10 million research fund that is now open to applicants studying ME/CFS.
Solve ME article with links here Thread here
UK ME/CFS Biobank has been funded by the ME Association from the start. The MEA has announced a further donation of £175,000 for the next 2 years. "The appeal to other scientists working in the field is that it can be more cost-effective to purchase high-quality samples and data rather than (or as well as) having to recruit and take samples and data themselves."
Article here Thread here
Boston USA ME/CFS Researcher Michael VanElzakker is running a brain scan study at Massachusetts General Hospital and is currently recruiting patients and healthy controls.
Thread with links here
Open Medicine Foundation
Christopher Armstrong, PhD, is the Director of the OMF Supported Melbourne ME/CFS Collaborative. He provides updates on the Ocular Motor project to monitor eye behavior in ME/CFS patients, his work into studying Post Exertion Malaise, and more.
Video here (duration 32 minutes) Thread here
USA 'Solve M.E. CEO Oved Amitay and Dr. Leonard Jason 'recently co-authored a response to a Nature article linking Epstein-Barr virus (EBV) and multiple sclerosis (MS), and the possibility that EBV vaccines and antivirals could prevent MS. Jason and Amitay note the connection between ME/CFS and EBV call for similar research into preventive vaccines for ME/CFS'.
Article with copy of letter here Thread here
Canada ICanCME 'The Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network is a national research network of researchers, clinicians, and patient partners working to advance the understanding of ME and its biomedical research'. They have a website under development and produce a monthly e-newsletter.
Website here Thread here
UK NIHR (National Institute of Health and Care Research)
"Researching long COVID: addressing a new global health challenge"
'To date, more than £50 million of government funding has been invested in long COVID research projects'. The article lists 19 funded projects including biomedical studies and testing possible treatments.
Article here Thread here
UK Medical Research Council survey
'The MRC values the role of patients and the public in research and we have commissioned a public involvement review to inform the development of our new strategy.' Survey closes 27th May.
Survey here Thread here
Public Defence by Msc Riad Hajdarevic who will provide a trial lecture on the topic: "Lessons from the Covid-19 pandemic to provide a better understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)". It takes place June 3rd at 10.15 in Oslo, Norway and it's possible to stream the event.
More information here Thread here
.................
Research
Chronic Illness
"Cytokine network analysis in a community-based pediatric sample of patients with ME/CFS" by Jason et al.
Data was from a small number of patients and controls found in a large screening study. 'Patterns of plasma cytokine networks were analyzed'.
The abstract concludes: 'Our data imply biological differences between our three participant groups, with ME/CFS and S-ME/CFS participants demonstrating an inflammatory profile. Examining co-expression of cytokines may aid in the identification of a biomarker for pediatric ME/CFS'.
Abstract published online ahead of print here Thread here
Brain Nerve
Pub Med has published short abstracts of two articles in Japanese bracketed under the heading [Patients with ME/CFS Who Have Already Visited Some Medical Institutions: The Points of Diagnosis and Treatment]
Threads here and here
University of Bristol
“Improving the identification and treatment of co-morbid depression and/or anxiety in adolescents with Chronic Fatigue Syndrome (CFS/ME)” by M. Loades.
Maria Loades published her Ph.D. Thesis on the identification and treatment of co-morbid depression and/or anxiety in adolescents with CFS/ME. Several of her studies, however, received a critical review from S4ME forum members.
Thesis here Thread here
Health Expectations
“Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community” by Ireson et al.
The authors argue that patient testimonies are vital to understanding and treating Long Covid but that patients are frequently disbelieved, and their testimonies not taken seriously leading to stigma and epistemic injustice.
Article here Thread here
Systematic Reviews
“Intimate partner violence and women living with episodic disabilities: a scoping review protocol” by Campbell et al.
CFS was included in this review as an 'episodic disability' which was defined as “chronic conditions or diseases that are unpredictable in course and fluctuate between periods and levels of functional disability and wellness.”
Article here Thread here
...............
Continued in part 2
Week beginning 16th May 2022
Part 2 of 2
Long COVID news
STAT Omitting long Covid from pandemic messaging is harmful for public health
Philosophy professors Danielle Wenner and Gabriela Arguedas Ramírez argues that lack of awareness and information about Long Covid "deprives the public of knowledge necessary to understand the risks of various activities, make informed decisions about risk-taking, and understand what is happening to them if they feel sick for an extended period".
Opinion piece here Thread here
UK Parliament The All Party Parliamentary Group on Coronavirus panel discussion 'Where are we on Long Covid' is available on YouTube. Duration 47 minutes. A 2 minute video of highlights from the meeting, including mention of ME/CFS now being more recognised, has been posted on Twitter by Adam @ABrokenBattery.
Video here Highlights here Thread here
The Body Pro Long COVID and Cognitive Dysfunction: Searching for Answers
Excellent interview by Terri Wilder with neurology professor Serena Spudich at Yale. She explains how an inflammatory response could cause cognitive problems. She is also working on a grant that will be looking at both COVID and ME/CFS.
Article here Thread here
MarketWatch 'This isn't just gonna go away': Long COVID is crashing the retirement hopes of many Americans
About the financial challenges of long COVID sufferer. Includes interview with JD Davids who has both ME/CFS and long COVID. He says he doesn't have the capacity to save money and that being chronically ill is a full-time job.
Article here Thread here
Podcast The Daily A Better Understanding of Long Covid
Interview with health and science reporter Pam Belluck who provides general information about Long Covid and also says this is an opportunity to bring more attention to other conditions as ME and fibromyalgia.
Podcast here Thread here
................
S4ME forum reorganisation
The S4ME forum structure has recently been reorganised, and it should now be easier to find threads on news and research for Long COVID and for other conditions related to ME/CFS. There are too many to list individually in the weekly news bulletin. They can be found in these forums:
Long Covid news including a long thread with media and social media news here
See the section above for some selected examples.
Psychosomatic news - ME/CFS and Long Covid includes threads on ongoing problems of psychologisation of many chronic diseases
Long Covid research Hundreds of research papers published already, including in the last week:
Decreased Fatty Acid Oxidation and Altered Lactate Production during Exercise in Patients with Post-acute COVID-19 Syndrome, 2022, de Boer et al
Paper here Thread here
Neuro-inflammatory disease following SARS-CoV-2 infection in children, 2022, Aubart et
Paper here Thread here
Predictors of Submaximal Exercise Test Attainment in Adults Reporting Long COVID Symptoms, 2022, Romero-Ortuno et al
Paper here Thread here
'Conditions related to ME/CFS' news and research
Topics covered include fibromyalgia, POTS (postural orthostatic tachycardia syndrome), Gulf War illness, irritable bowel syndrome. For example:
"The impact of Micro RNA-320a serum level on severity of symptoms and cerebral processing of pain in patients with fibromyalgia" by Hussein et al
Paper here Thread here
"Unexplained post-acute infection syndromes" by Iwasaki et al
A recent review paper gives an epidemiological overview of post-infectious illnesses up to and including Long Covid, looks at similarities including ME/CFS developing after many different infections, and points out the lack of research.
Article here Thread here
Psychosomatic research - ME/CFS and Long Covid
The view of ME/CFS as psychosomatic by some researchers has been extended to Long Covid, with papers being published purporting to find psychological factors connected with ME/CFS, and supporting the CBT and graded exercise approaches to treatment.
Other psychosomatic news and research
The same applies to related conditions such as fibromyalgia and irritable bowel syndrome and those classed as MUS (medically unexplained symptoms). Recent papers report studies on malingering here and alexithymia here
.................
S4ME social media: Facebook, Twitter and YouTube
Part 2 of 2
Long COVID news
STAT Omitting long Covid from pandemic messaging is harmful for public health
Philosophy professors Danielle Wenner and Gabriela Arguedas Ramírez argues that lack of awareness and information about Long Covid "deprives the public of knowledge necessary to understand the risks of various activities, make informed decisions about risk-taking, and understand what is happening to them if they feel sick for an extended period".
Opinion piece here Thread here
UK Parliament The All Party Parliamentary Group on Coronavirus panel discussion 'Where are we on Long Covid' is available on YouTube. Duration 47 minutes. A 2 minute video of highlights from the meeting, including mention of ME/CFS now being more recognised, has been posted on Twitter by Adam @ABrokenBattery.
Video here Highlights here Thread here
The Body Pro Long COVID and Cognitive Dysfunction: Searching for Answers
Excellent interview by Terri Wilder with neurology professor Serena Spudich at Yale. She explains how an inflammatory response could cause cognitive problems. She is also working on a grant that will be looking at both COVID and ME/CFS.
Article here Thread here
MarketWatch 'This isn't just gonna go away': Long COVID is crashing the retirement hopes of many Americans
About the financial challenges of long COVID sufferer. Includes interview with JD Davids who has both ME/CFS and long COVID. He says he doesn't have the capacity to save money and that being chronically ill is a full-time job.
Article here Thread here
Podcast The Daily A Better Understanding of Long Covid
Interview with health and science reporter Pam Belluck who provides general information about Long Covid and also says this is an opportunity to bring more attention to other conditions as ME and fibromyalgia.
Podcast here Thread here
................
S4ME forum reorganisation
The S4ME forum structure has recently been reorganised, and it should now be easier to find threads on news and research for Long COVID and for other conditions related to ME/CFS. There are too many to list individually in the weekly news bulletin. They can be found in these forums:
Long Covid news including a long thread with media and social media news here
See the section above for some selected examples.
Psychosomatic news - ME/CFS and Long Covid includes threads on ongoing problems of psychologisation of many chronic diseases
Long Covid research Hundreds of research papers published already, including in the last week:
Decreased Fatty Acid Oxidation and Altered Lactate Production during Exercise in Patients with Post-acute COVID-19 Syndrome, 2022, de Boer et al
Paper here Thread here
Neuro-inflammatory disease following SARS-CoV-2 infection in children, 2022, Aubart et
Paper here Thread here
Predictors of Submaximal Exercise Test Attainment in Adults Reporting Long COVID Symptoms, 2022, Romero-Ortuno et al
Paper here Thread here
'Conditions related to ME/CFS' news and research
Topics covered include fibromyalgia, POTS (postural orthostatic tachycardia syndrome), Gulf War illness, irritable bowel syndrome. For example:
"The impact of Micro RNA-320a serum level on severity of symptoms and cerebral processing of pain in patients with fibromyalgia" by Hussein et al
Paper here Thread here
"Unexplained post-acute infection syndromes" by Iwasaki et al
A recent review paper gives an epidemiological overview of post-infectious illnesses up to and including Long Covid, looks at similarities including ME/CFS developing after many different infections, and points out the lack of research.
Article here Thread here
Psychosomatic research - ME/CFS and Long Covid
The view of ME/CFS as psychosomatic by some researchers has been extended to Long Covid, with papers being published purporting to find psychological factors connected with ME/CFS, and supporting the CBT and graded exercise approaches to treatment.
Other psychosomatic news and research
The same applies to related conditions such as fibromyalgia and irritable bowel syndrome and those classed as MUS (medically unexplained symptoms). Recent papers report studies on malingering here and alexithymia here
.................
S4ME social media: Facebook, Twitter and YouTube
Last edited:
Week beginning 23rd May 2022
News, articles, advocacy
UK Parliament The All Party Parliamentary Group on ME chaired by MP Carol Monaghan launched its report 'Rethinking ME' at an event addressed by the Secretary of State for Health and Social Care, Sajid Javid.
The 37 page report gives an excellent overview of the problems with past misunderstanding and mistreatment of ME, and recommendations under 5 headings including biomedical research, medical care, children and young people, financial support, and Long Covid.
APPG's are interest groups with no power to influence government action unless ministers choose to do so. Sajid Javid pledged to lead a cross-government initiative on ME.
Website with link to report here Thread here
The Times "Sajid Javid rethinking ME after young relative’s battles" by Sean O'Neill. Describes some of Javid's relative's experience that he spoke about at the event, and his committment to action on the findings of the report.
Article here Thread here
British Medical Journal "Health secretary pledges more ME/CFS research as he reveals that relative has condition" by Ingrid Torjesen
Article here Thread her
UK BBC radio 4 Woman's Hour had an excellent section on ME/CFS with guest Sean O'Neill who spoke movingly about his daughter Maeve who died last year from very severe ME, and the lack of appropriate care. This followed his articles in the Times recently. Charles Shepherd also spoke well about the NICE guideline, and government recognition and support for implemenation of its recommendations.
Radio link here ME Association transcript here Thread here
Trial by Error by David Tuller Speaker at CDC Event Promotes CBT and "Very Gradual" GET
Despite CDC having removed recommendations of GET and CBT as treatments in 2017, GET was promoted during a talk by Stephen Gluckman at the agency's recent May Stakeholder Engagement and Communication call. Gluckman has also written educational materials about ME/CFS highlighting GET and CBT as interventions.
Article here Thread here
USA #MEAction is urging everyone to email Dr. Unger regarding outdated and harmful management recommendations presented during the May 13 CDC Stakeholder Engagement & Communication (SEC) Call. Listing graded exercise therapy (GET) as a management tool puts ME patients at risk. An email template is provided.
Article here Thread here
New Zealand Otago University held an online seminar on Long Covid including talks on the history of post viral illnesses including ME/CFS, biological cause, past mistakes with the psychological approach, lived experience, and the need for better support, but also some less helpful talks.
Thread with summary here and here
An article in Stuff reports the Disability Rights Commissioner saying 'Long Covid will be one of this generation's disability challenges'. Paula Tesoriero said adequate support for those with long Covid, and other chronic health and disability issues was needed.
Article here Thread here
Denmark "Facts and myths about chronic fatigue syndrome" by Per Fink et al
An article in a Danish medical journal criticising the NICE guidelines for ME/CFS which no longer recommends CBT/GET as treatments and also emphasises the importance of pacing. The authors claim this is based on the NICE committee's interpretation of evidence, not evidence itself, and that there's no need to update the clinical approach in Denmark in line with the new guidelines from UK.
Article here (paywalled) Thread here
Solve M.E. During week three of Advocacy Month, 325 advocates participated in 250 virtual meetings with Members of Congress over 3 days. There is still time for US residents to send messages to their elected officials using the Solve M.E. action center.
Announcement here Thread here
Canada In response to the news that ME/CFS patients would not be allowed access to Long Covid clinics, the AQEM, a patient group based in Quebec, has written an open letter to Quebec Health Minister Christian Dubé. The letter also points out that studies have drawn links between long COVID and ME/CFS since the beginning of the pandemic.
Article here Thread here
Germany
The influential German magazine Der Spiegel has published an article on Milena Hermisson a young patient and advocate with very severe ME/CFS. The title is: “Man kann sein Leben verlieren, ohne zu sterben” (in English: “You can lose your life without dying”).
Article here Thread here
Doctors with ME have received a donation to fund the setting up of a digital platform for their professional members to share resources and enable collaboration and planning.
Article here Thread here
Sweden Three paywalled articles about ME, one about the couple Fredrik and ME sufferer Cecilia, one an interview with researcher Jonas Bergquist who says that the health care for ME patients leads to deterioration, and one about ME sufferer Maria.
Articles here, here and here Thread here
UK book 'The Long Covid Self-Help Guide. Practical Ways To Manage Symptoms' by clinicians at the Oxford Long Covid Clinic. The British Journal of General Practice has a review by Prof Greenhalgh. The review indicates that the book suggests an overcautious psychological response 'may lead to a vicious cycle of low mood, reluctance to participate in activities, and worsening fatigue'.
Review here Thread here
UK Daily Mail "Long Covid? Don’t fall for quick-fix ‘cures’! Private clinics are marketing a range of therapies including supplements to help tackle the condition."
Article here Thread here
..............
Research news
Solve M.E. The Ramsay Research Grant Program has extended the application deadline until June 6, 2022. Details about the program, including how to apply, are on the Solve M.E. website.
Announcement here Thread here
Emerge Australia The video is now available of a research panel webinar with speakers including Paul Fisher, Chris Armstrong, Ken Walder and Sara Ballouz.
Video here Thread here
..............
Research and commentary
Molecular Omics
“Pre-Illness Data reveals Differences in Multiple Metabolites and Metabolic Pathways in Those Who Do and Do Not Recover from Infectious” by Jason et al.
The authors compared metabolic data of 18 people who recovered from infectious mononucleosis versus 18 people who went on to develop ME/CFS 6 months later. There were differences in glutathione metabolism, nucleotide metabolism, and the TCA cycle, differentiating both groups with more than 90% sensitivity and specificity.
Article here Thread here
Frontiers in Neurology Neuroinfectious Diseases
"Molecular Mechanisms of Neuroinflammation in ME/CFS and Long COVID to Sustain Disease and Promote Relapses" by Tate et al.
In this hypothesis paper Tate et al attempt to connect the findings of several small studies and hypotheses into a possible explanation for ME/CFS and Long COVID symptoms. Forum discussion raises concerns about the lack of replication of evidence used, and unevidenced assumptions about brain inflammation and the role of stress.
Article here Thread here
Annals of Internal Medicine
"A Longitudinal Study of COVID-19 Sequelae and Immunity: Baseline Findings" by Sneller et al
This first phase of a US National Institutes of Health study based on a self selected cohort concludes: 'Extensive diagnostic evaluation revealed no specific cause of reported symptoms in most cases'. The study is causing concern on social media as the tests done were standard tests unlikely to show differences, and there is evidence of the authors taking a psychological view of Long Covid.
Paper here Thread here
Archives of Community Medicine
“Comparing Operationalized Approaches for Substantial Reduction of Functioning in Chronic Fatigue Syndrome and Myalgic Encephalomyelitis” by Wiedbusch & Jason
This study looked at 5 different ways how researchers can define a substantial reduction in functioning from pre-illness levels, which is often required in ME/CFS case definitions.
Article here Thread here
Occupational Medicine
“Chronic fatigue syndrome and occupational status: a retrospective longitudinal study” by Hughes and Tuller
In this letter to the Editor, Brian Hughes and Tuller criticize a previous paper in the journal Occupational by the research team of Trudie Chalder. Claiming that “In several sections of the paper, the authors’ description of their own statistical findings is incorrect”, Hughes and Tuller ask for the study to be retracted. In their response, Chalder et al. accept there is a need for some clarification on certain points, but the authors stand by the paper’s key findings.
Letter here response by the authors here Thread here
The Science Bit by Brian Hughes Authors defend statistical errors, editor sees no evil
Hughes explains the errors of the Chalder et al's paper titled "Chronic fatigue syndrome and occupational status: a retrospective longitudinal study" published by the journal Occupational Medicine. Hughes and David Tuller wrote to the editor and asked for the paper to be retracted. Instead the paper chose to publish the Hughes-Tuller's letter together with a reply from the researchers and leave it at that. See item above.
Article here Thread here
Trial By Error by David Tuller An Innumerate Response from Chalder to Hughes-Tuller Comments on Bogus Data Analysis
A repost of Hughes-Tuller's critical letter to journal Occupational Medicine about the Chalder et al paper and of the researcher's response. Tuller says the journal's peer-review process failed spectacularly in this case and speaks poorly for the editor's judgment. See items above.
Article here Thread here
..............
Coming Events
Solve M.E. has the following three webinars scheduled in June:
Long Covid and Children with Dr. Peter Rowe
Tuesday, June 7, 11:00 am - 12:00 pm PDT
ME/CFS: NO problem? (NO = Nitric Oxide) with Francisco Westermeier
Monday, June 13, 10:00 am - 11:00 am PDT
How We Can See ME/CFS Inflammation in the Brain with Dr. Jarred Younger
Thursday, June 23, 10:00 am - 11:00 am PDT
Events page here Thread here
..............
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
UK Parliament The All Party Parliamentary Group on ME chaired by MP Carol Monaghan launched its report 'Rethinking ME' at an event addressed by the Secretary of State for Health and Social Care, Sajid Javid.
The 37 page report gives an excellent overview of the problems with past misunderstanding and mistreatment of ME, and recommendations under 5 headings including biomedical research, medical care, children and young people, financial support, and Long Covid.
APPG's are interest groups with no power to influence government action unless ministers choose to do so. Sajid Javid pledged to lead a cross-government initiative on ME.
Website with link to report here Thread here
The Times "Sajid Javid rethinking ME after young relative’s battles" by Sean O'Neill. Describes some of Javid's relative's experience that he spoke about at the event, and his committment to action on the findings of the report.
Article here Thread here
British Medical Journal "Health secretary pledges more ME/CFS research as he reveals that relative has condition" by Ingrid Torjesen
Article here Thread her
UK BBC radio 4 Woman's Hour had an excellent section on ME/CFS with guest Sean O'Neill who spoke movingly about his daughter Maeve who died last year from very severe ME, and the lack of appropriate care. This followed his articles in the Times recently. Charles Shepherd also spoke well about the NICE guideline, and government recognition and support for implemenation of its recommendations.
Radio link here ME Association transcript here Thread here
Trial by Error by David Tuller Speaker at CDC Event Promotes CBT and "Very Gradual" GET
Despite CDC having removed recommendations of GET and CBT as treatments in 2017, GET was promoted during a talk by Stephen Gluckman at the agency's recent May Stakeholder Engagement and Communication call. Gluckman has also written educational materials about ME/CFS highlighting GET and CBT as interventions.
Article here Thread here
USA #MEAction is urging everyone to email Dr. Unger regarding outdated and harmful management recommendations presented during the May 13 CDC Stakeholder Engagement & Communication (SEC) Call. Listing graded exercise therapy (GET) as a management tool puts ME patients at risk. An email template is provided.
Article here Thread here
New Zealand Otago University held an online seminar on Long Covid including talks on the history of post viral illnesses including ME/CFS, biological cause, past mistakes with the psychological approach, lived experience, and the need for better support, but also some less helpful talks.
Thread with summary here and here
An article in Stuff reports the Disability Rights Commissioner saying 'Long Covid will be one of this generation's disability challenges'. Paula Tesoriero said adequate support for those with long Covid, and other chronic health and disability issues was needed.
Article here Thread here
Denmark "Facts and myths about chronic fatigue syndrome" by Per Fink et al
An article in a Danish medical journal criticising the NICE guidelines for ME/CFS which no longer recommends CBT/GET as treatments and also emphasises the importance of pacing. The authors claim this is based on the NICE committee's interpretation of evidence, not evidence itself, and that there's no need to update the clinical approach in Denmark in line with the new guidelines from UK.
Article here (paywalled) Thread here
Solve M.E. During week three of Advocacy Month, 325 advocates participated in 250 virtual meetings with Members of Congress over 3 days. There is still time for US residents to send messages to their elected officials using the Solve M.E. action center.
Announcement here Thread here
Canada In response to the news that ME/CFS patients would not be allowed access to Long Covid clinics, the AQEM, a patient group based in Quebec, has written an open letter to Quebec Health Minister Christian Dubé. The letter also points out that studies have drawn links between long COVID and ME/CFS since the beginning of the pandemic.
Article here Thread here
Germany
The influential German magazine Der Spiegel has published an article on Milena Hermisson a young patient and advocate with very severe ME/CFS. The title is: “Man kann sein Leben verlieren, ohne zu sterben” (in English: “You can lose your life without dying”).
Article here Thread here
Doctors with ME have received a donation to fund the setting up of a digital platform for their professional members to share resources and enable collaboration and planning.
Article here Thread here
Sweden Three paywalled articles about ME, one about the couple Fredrik and ME sufferer Cecilia, one an interview with researcher Jonas Bergquist who says that the health care for ME patients leads to deterioration, and one about ME sufferer Maria.
Articles here, here and here Thread here
UK book 'The Long Covid Self-Help Guide. Practical Ways To Manage Symptoms' by clinicians at the Oxford Long Covid Clinic. The British Journal of General Practice has a review by Prof Greenhalgh. The review indicates that the book suggests an overcautious psychological response 'may lead to a vicious cycle of low mood, reluctance to participate in activities, and worsening fatigue'.
Review here Thread here
UK Daily Mail "Long Covid? Don’t fall for quick-fix ‘cures’! Private clinics are marketing a range of therapies including supplements to help tackle the condition."
Article here Thread here
..............
Research news
Solve M.E. The Ramsay Research Grant Program has extended the application deadline until June 6, 2022. Details about the program, including how to apply, are on the Solve M.E. website.
Announcement here Thread here
Emerge Australia The video is now available of a research panel webinar with speakers including Paul Fisher, Chris Armstrong, Ken Walder and Sara Ballouz.
Video here Thread here
..............
Research and commentary
Molecular Omics
“Pre-Illness Data reveals Differences in Multiple Metabolites and Metabolic Pathways in Those Who Do and Do Not Recover from Infectious” by Jason et al.
The authors compared metabolic data of 18 people who recovered from infectious mononucleosis versus 18 people who went on to develop ME/CFS 6 months later. There were differences in glutathione metabolism, nucleotide metabolism, and the TCA cycle, differentiating both groups with more than 90% sensitivity and specificity.
Article here Thread here
Frontiers in Neurology Neuroinfectious Diseases
"Molecular Mechanisms of Neuroinflammation in ME/CFS and Long COVID to Sustain Disease and Promote Relapses" by Tate et al.
In this hypothesis paper Tate et al attempt to connect the findings of several small studies and hypotheses into a possible explanation for ME/CFS and Long COVID symptoms. Forum discussion raises concerns about the lack of replication of evidence used, and unevidenced assumptions about brain inflammation and the role of stress.
Article here Thread here
Annals of Internal Medicine
"A Longitudinal Study of COVID-19 Sequelae and Immunity: Baseline Findings" by Sneller et al
This first phase of a US National Institutes of Health study based on a self selected cohort concludes: 'Extensive diagnostic evaluation revealed no specific cause of reported symptoms in most cases'. The study is causing concern on social media as the tests done were standard tests unlikely to show differences, and there is evidence of the authors taking a psychological view of Long Covid.
Paper here Thread here
Archives of Community Medicine
“Comparing Operationalized Approaches for Substantial Reduction of Functioning in Chronic Fatigue Syndrome and Myalgic Encephalomyelitis” by Wiedbusch & Jason
This study looked at 5 different ways how researchers can define a substantial reduction in functioning from pre-illness levels, which is often required in ME/CFS case definitions.
Article here Thread here
Occupational Medicine
“Chronic fatigue syndrome and occupational status: a retrospective longitudinal study” by Hughes and Tuller
In this letter to the Editor, Brian Hughes and Tuller criticize a previous paper in the journal Occupational by the research team of Trudie Chalder. Claiming that “In several sections of the paper, the authors’ description of their own statistical findings is incorrect”, Hughes and Tuller ask for the study to be retracted. In their response, Chalder et al. accept there is a need for some clarification on certain points, but the authors stand by the paper’s key findings.
Letter here response by the authors here Thread here
The Science Bit by Brian Hughes Authors defend statistical errors, editor sees no evil
Hughes explains the errors of the Chalder et al's paper titled "Chronic fatigue syndrome and occupational status: a retrospective longitudinal study" published by the journal Occupational Medicine. Hughes and David Tuller wrote to the editor and asked for the paper to be retracted. Instead the paper chose to publish the Hughes-Tuller's letter together with a reply from the researchers and leave it at that. See item above.
Article here Thread here
Trial By Error by David Tuller An Innumerate Response from Chalder to Hughes-Tuller Comments on Bogus Data Analysis
A repost of Hughes-Tuller's critical letter to journal Occupational Medicine about the Chalder et al paper and of the researcher's response. Tuller says the journal's peer-review process failed spectacularly in this case and speaks poorly for the editor's judgment. See items above.
Article here Thread here
..............
Coming Events
Solve M.E. has the following three webinars scheduled in June:
Long Covid and Children with Dr. Peter Rowe
Tuesday, June 7, 11:00 am - 12:00 pm PDT
ME/CFS: NO problem? (NO = Nitric Oxide) with Francisco Westermeier
Monday, June 13, 10:00 am - 11:00 am PDT
How We Can See ME/CFS Inflammation in the Brain with Dr. Jarred Younger
Thursday, June 23, 10:00 am - 11:00 am PDT
Events page here Thread here
..............
S4ME social media: Facebook, Twitter and YouTube
Last edited: