-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
News in Brief - July 2020
- Thread starter Trish
- Start date
-
- Tags
- news in brief
Week beginning 6th July 2020
General news
UK - DecodeME webinar The team answered about 30 questions from 2000 viewers about the planned genetic study, including who can participate, the time scale and processes involved. Those who have registered their interest will be kept updated by email. Duration 53 minutes.
Website and registration here Thread with video link here
Trial by Error by David Tuller
"Excellent News Coverage of UK Genetics Study in The Times"
A summary of the informative articles from The Times concerning ME and the funding of the DecodeME genetic study.
Article here Thread here
USA A new version of the document "Diagnosing and Treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)" has been released by the U.S. ME/CFS Clinician Coalition.
PDF file here Thread here
Canada Clinicians and administrators living in British Columbia are invited to fill out a short survey on treatment and care of Myalgic Encephalomyelitis. The survey, part of a community engagement project funded by the Vancouver Foundation, will be open until August 4, 2020.
Announcement here Thread here
USA - How to Stay at Home
Guest post in Psychology Today by patient-advocate Jenny Spotila.
Article here Thread here
..................
Covid-19 and ME
UK NICE (National Institute for Health and Care Excellence)
"Statement about graded exercise therapy in the context of COVID-19"
A short statement saying they are aware of concerns: 'it should not be assumed that the recommendations apply to people with fatigue following COVID19'. It states that the ME/CFS guideline is under review, and directs readers to a recent NHS guide for aftercare for Covid-19 inpatients.
Statement here MEAction article here Thread here
CNN "Coronavirus may cause fatigue syndrome, Fauci says"
Dr. Anthony Fauci said on a news conference this week that there's evidence some people develop a long-term fatigue syndrome from coronavirus. He said the symptoms resemble those seen in ME.
Article here Thread here
BBC Coronavirus: Thousands say debilitating symptoms last "for weeks"
On "long-haulers" of Covid-19. Includes interview with Prof. Paul Garner who is documenting his own illness after having been infected with the corona virus. He describes his condition now as being similar to CFS or ME.
Article here Thread here
Sweden Article from the newspaper Aftonbladet interviewing among others Prof. Jonas Bergquist who hopes research into Covid patients may also lead to breakthroughs in research into ME.
Article here (Paywalled and in Swedish) Thread here
Spiegel International "Many Stay Sick After Recovering From Coronavirus"
Article includes interview with ME researcher Carmen Scheibenbogen who says that it's too early to make a CFS diagnosis until six months after infection and that by then there's a good chance symptoms will have calmed down on its own. She adds: "Overexerting oneself or doing sports that exacerbate symptoms should definitely be avoided. This can make things worse"
Article here Thread here
BBC World News Section on long-term symptoms following Covid-19. Guests Fiona Lowenstein, Prof. Paul Garner and Dr. Avindra Nath. Prof. Garner says he finds the literature about ME very helpful for rehabilitation. Dr. Nath says there's a possibility that there may be an ongoing viral replication driving an immune response. A second possibility is that the virus is gone, but the immune system hasn't returned to baseline. A third possibility that there are still unknown factors. Duration 11 minutes.
Thread with video section here
Ireland Covid 19 & Chronic Fatigue Syndrome
ME patient and advocate Sarah O´Connell talks about ME, the situation for ME patients in Ireland and possible links between ME and Covid-19 in the radio program Saturday Live with Carol Dooley. Duration: 18 minutes
Program here Thread here
.................
Research
Human Arenas
“I Need to Start Listening to What my Body Is Telling Me.”: Does Mindfulness-Based Cognitive Therapy Help People with Chronic Fatigue Syndrome?" by O'Dowd and Griffith.
In this study, interviews were conducted with 9 ME/CFS patients after following an 8-week Mindfulness-Based Cognitive Therapy course. Both authors are Mindfulness-Based Programme teachers and have their own personal mindfulness practice.
Article here Thread here
.................
Advocacy
25% ME Group Severe M.E Day - 8th of August 2020
The 25% ME Group marks their 25 year anniversary this year. For the awareness day of severe ME 8th of August they want to feature short stories/pictures of how the illness affects severe ME sufferers. More information and campaigning material on their website.
Website here Thread here
.....................
S4ME social media: Facebook, Twitter and You Tube
General news
UK - DecodeME webinar The team answered about 30 questions from 2000 viewers about the planned genetic study, including who can participate, the time scale and processes involved. Those who have registered their interest will be kept updated by email. Duration 53 minutes.
Website and registration here Thread with video link here
Trial by Error by David Tuller
"Excellent News Coverage of UK Genetics Study in The Times"
A summary of the informative articles from The Times concerning ME and the funding of the DecodeME genetic study.
Article here Thread here
USA A new version of the document "Diagnosing and Treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)" has been released by the U.S. ME/CFS Clinician Coalition.
PDF file here Thread here
Canada Clinicians and administrators living in British Columbia are invited to fill out a short survey on treatment and care of Myalgic Encephalomyelitis. The survey, part of a community engagement project funded by the Vancouver Foundation, will be open until August 4, 2020.
Announcement here Thread here
USA - How to Stay at Home
Guest post in Psychology Today by patient-advocate Jenny Spotila.
Article here Thread here
..................
Covid-19 and ME
UK NICE (National Institute for Health and Care Excellence)
"Statement about graded exercise therapy in the context of COVID-19"
A short statement saying they are aware of concerns: 'it should not be assumed that the recommendations apply to people with fatigue following COVID19'. It states that the ME/CFS guideline is under review, and directs readers to a recent NHS guide for aftercare for Covid-19 inpatients.
Statement here MEAction article here Thread here
CNN "Coronavirus may cause fatigue syndrome, Fauci says"
Dr. Anthony Fauci said on a news conference this week that there's evidence some people develop a long-term fatigue syndrome from coronavirus. He said the symptoms resemble those seen in ME.
Article here Thread here
BBC Coronavirus: Thousands say debilitating symptoms last "for weeks"
On "long-haulers" of Covid-19. Includes interview with Prof. Paul Garner who is documenting his own illness after having been infected with the corona virus. He describes his condition now as being similar to CFS or ME.
Article here Thread here
Sweden Article from the newspaper Aftonbladet interviewing among others Prof. Jonas Bergquist who hopes research into Covid patients may also lead to breakthroughs in research into ME.
Article here (Paywalled and in Swedish) Thread here
Spiegel International "Many Stay Sick After Recovering From Coronavirus"
Article includes interview with ME researcher Carmen Scheibenbogen who says that it's too early to make a CFS diagnosis until six months after infection and that by then there's a good chance symptoms will have calmed down on its own. She adds: "Overexerting oneself or doing sports that exacerbate symptoms should definitely be avoided. This can make things worse"
Article here Thread here
BBC World News Section on long-term symptoms following Covid-19. Guests Fiona Lowenstein, Prof. Paul Garner and Dr. Avindra Nath. Prof. Garner says he finds the literature about ME very helpful for rehabilitation. Dr. Nath says there's a possibility that there may be an ongoing viral replication driving an immune response. A second possibility is that the virus is gone, but the immune system hasn't returned to baseline. A third possibility that there are still unknown factors. Duration 11 minutes.
Thread with video section here
Ireland Covid 19 & Chronic Fatigue Syndrome
ME patient and advocate Sarah O´Connell talks about ME, the situation for ME patients in Ireland and possible links between ME and Covid-19 in the radio program Saturday Live with Carol Dooley. Duration: 18 minutes
Program here Thread here
.................
Research
Human Arenas
“I Need to Start Listening to What my Body Is Telling Me.”: Does Mindfulness-Based Cognitive Therapy Help People with Chronic Fatigue Syndrome?" by O'Dowd and Griffith.
In this study, interviews were conducted with 9 ME/CFS patients after following an 8-week Mindfulness-Based Cognitive Therapy course. Both authors are Mindfulness-Based Programme teachers and have their own personal mindfulness practice.
Article here Thread here
.................
Advocacy
25% ME Group Severe M.E Day - 8th of August 2020
The 25% ME Group marks their 25 year anniversary this year. For the awareness day of severe ME 8th of August they want to feature short stories/pictures of how the illness affects severe ME sufferers. More information and campaigning material on their website.
Website here Thread here
.....................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 13th July 2020
News
Czech Republic Following the publication of an open letter on ME/CFS, organized by the Czech ME/CFS organization, a proposal to include ME/CFS in the clinical practice guidelines program was discussed at the guarantee commission in the presence of the Minister of Health. Olga Richterová, a member of the Chamber of Deputies has written two interpellations about this, one to Minister of Health and one to the Minister of Labour and Social affairs.
News here Thread here
Europe Several parliamentary questions were asked regarding the ME/CFS resolution including from Jordi Cañas (Spain, Renew), Kosma Złotowski (Poland, ECR) and Chris MacManus (Ireland, GUE/NGL). The questions ask how the European Commission will follow up on the ME/CFS resolution and whether it will allocate additional funding to research the long-term effects of Covid-19 and the link between the virus and ME/CFS.
Thread (with links to each of the questions) here
..................
Trial by Error by David Tuller
NICE on Exercise and Post-Covid Syndrome
A useful writeup on NICE's statement that recommendations of graded exercise therapy as fatigue treatment should not necessarily be applied to patients with fatigue following Covid-19. Tuller warns there is unfortunately still risk for post Covid fatigue being subjected to a "failed biospychosocial template".
Article here Thread here
.................
Covid-19 and ME
ME Association "Clinician’s Letter to NICE Results in Statement on Graded Exercise for Post-Covid-Syndrome"
Drs Charles Shepherd and William Weir wrote a letter to NICE several weeks ago, signed by other clinicians on the ME/CFS NICE guideline committee, warning of the dangers of using the ME/CFS guideline on GET for post Covid patients. This resulted in the short statement from NICE (see last week's news). The article also reports Prof. Paul Garner urging clinicians to advise pacing, not GET for post Covid patients, based on his own and other patients' experience.
Article here Thread here
The Bunker (Podcast) "Long COVID" - A new and hidden crisis
Interview with Prof. Paul Garner who talks about his experience with long Covid. He says the NICE guidelines on increasing exercise was completely inappropriate for him. What has helped him most is ME literature and learning about pacing. Duration 29 min.
Thread with link to episode here
The Conversation "Coronavirus: why are some people experiencing long-term fatigue?"
Prof. Frances Williams writes about some of the research on post covid fatigue and other post viral fatigue. She links to the Continuing Professional Development (CPD) course on ME/CFS at StudyPRN, by Dr Nina Muirhead, and stresses the importance of rest and pacing for patients.
Article here Thread here
Latin Post "Fauci Warns Chronic Fatigue-Like-Syndrome Lingering For Months or Years Among Young COVID-19 Patients"
Article refers to a recent interview of Dr. Anthony Fauci by Mark Zuckerberg where Fauci says some young people who tested positive from the coronavirus now suffer from post infection syndromes similar of CFS.
Article here Thread here
The Scientist "Could Covid-19 Trigger Chronic Disease in Some People?"
Article interviews among others ME researchers Avindra Nath, Alain Moreau and Mady Hornig. Avindra Nath (NIH) urges more resources to be allocated to research into ME and to "get lots of people interested in studying these patients".
Article here Thread here
Medscape Fauci to Medscape: "We're All In It Together and We're Gonna Get Through It"
An audio interview with Dr. Anthony Fauci about the pandemic. The interview lasts 43 minutes and is also available as a transcript. Dr. Fauci says that we need to be careful and that: "... it's extraordinary how many people have a post viral syndrome that's very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome".
Article here Thread here
...............
Podcasts, articles, videos
Podcast "How To Exercise If You Have Chronic Fatigue"
The Dr. Ruscio podcast interviewed Dr. Nancy Klimas, ME/CFS researcher and clinician. Apparently the interview covered more topics than the title suggests. The website has a text summary of the interview in addition to audio.
Website here Thread here
A Life Hidden "The Uncertainty of Life After Lockdown"
Another beautifully written article from Naomi Whittingham. This time on mixed emotions as society is opening up again and how inappropriate psychological therapy in the past has resulted into difficulties trusting her own judgement today when deciding upon what are the right precautions for her.
Article here Thread here
Video "CBT therapy for CFS. Why is it controversial? Medical Research and my Experience". Elinor Brown, a student with CFS describes her experience of a combination of antidepressants and CBT helping her with her comorbid depression and anxiety, but having no effect on her CFS symptoms.
Duration: 11 minutes.
Video here Thread here
............
Useful resources
MDPI Healthcare
"Severe ME in children" by Nigel Speight.
Dr Speight uses case reports of children diagnosed with severe ME to describe good and bad treatment and outcomes. He points to the danger of referral to doctors, especially psychiatrists, who do not understand ME and may misdiagnose Fabricated and Induced Illness. He describes the dangers of GET, and problems of medical neglect. Care including home visits from doctors, symptomatic treatment and rest are recommended.
Article here Thread here
..................
Research
Frontiers in Neuroscience - Autonomic Neuroscience
"Cognitive Function Declines Following Orthostatic Stress in Adults With ME/CFS" by van Campen et al.
Previous studies had shown cognitive dysfunction during head-up tilt testing (HUT) in people with ME/CFS. This study of 128 ME/CFS patients showed a decline on a cognitive test when done before and within five minutes after completing a HUT. These results occurred regardless of ME severity or comorbid FM or POTS.
Article here Thread here
GECCO: Genetic and Evolutionary Computation Conference
"Batch Correction of Genomic Data in Chronic Fatigue Syndrome Using CMA-ES" by Rincon et al.
And algorithm was developed 'to optimize the weights of a transformation function for batch correction'. It was tested on mRNA gene expression data from 3 CFS datasets. The authors say it 'remarkably improves the performance of classifiers on the task of diagnosing Chronic Fatigue', and suggest it is a steppingstone towards a reliable diagnostic test.
Article PDF here Thread here
BMJ Open
“Patients’ experiences with fluctuations in persistent physical symptoms: a qualitative study” by Barends et al.
This Dutch research team explored the experience of symptom fluctuation in a sample of 15 patients with medically unexplained symptoms (referred to as persistent physical symptoms). Symptom exacerbations were attributed to overstepping physical limits and/or the impact of negative emotions. Patients mentioned the importance of respecting their physical limits in order to prevent their symptoms from worsening and to experience fewer ups and downs.
Article here Thread here
Upcoming study from Sweden on cell biological/immunometabolic changes in ME. It will include samples from 200 ME patients and 400 controls. The study will also explore covid-19 and the cause of post viral syndromes. Led by Professor Anders Rosén and Eirini Apostolou, PhD, the researchers also include MDs Per Julin, Björn Bragée and Bo C Bertilson and professor Jonas Bergquist. [Edited to add the lead researchers].
Thread with more information here
....................
Coming events
International Association for CFS/ME Registration is now open for the IACFS/ME 2020 Virtual Conference. The conference is scheduled for Friday, August 21, from 10:00 AM to 3:30 PM Eastern Daylight Time (New York City, USA). There is a registration fee.
Details here Thread here
USA On Saturday, August 29th #MEAction will host a seminar for clinicians to discuss diagnostic criteria and management advice for post-viral ME/CFS. This seminar is NOT open to the general public but patients can share the information on social media or send a flyer to their doctor(s).
Details here Thread here
......................
Advocacy action
USA There's a bill pending in the U.S. House that, if passed, would significantly increase the NIH research funding for ME/CFS. Solve M.E. has an created automated process to help people contact their Congressional Representative and urge them to support H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act.
Details here Thread here
UK #MEAction has drafted a letter to be sent to MP's asking for a warning to be placed on the NICE ME/CFS guidelines about graded exercise therapy. The letter highlights the harm caused by exercise, and the implications for people with post Covid-19 fatigue who may develop ME and may be harmed by the current NHS England advice for Covid 'long haulers'.
#MEAction article and letter here Thread here
UK Priority Setting Partnership for ME/CFS
A last chance to apply to join the steering group for this project.
Closing date for applications Monday 20th July.
Details here MEAssociation article here Thread here
Severe ME Day 8th August
UK ME Association: "Raising Awareness of Severe ME – A Call for Your Case Studies". The MEA ask people who have, or have had, severe ME to write a short piece and send with a photo by 25th July.
The 25% ME Group are also asking for personal stories and photos.
MEA Details here 25% ME Group details here Thread here
...............
Fundraising
UK ME Association "A challenge where YOU can help to drive change in medical attitudes towards ME!" The MEA is hoping to raise £30,000 for its medical education scheme. Donations of any size will be invited in December. To start this funderaising campaign they are asking for pledges of at least £100 by 28th August.
Details here Thread here
....................
S4ME social media: Facebook, Twitter and You Tube
News
Czech Republic Following the publication of an open letter on ME/CFS, organized by the Czech ME/CFS organization, a proposal to include ME/CFS in the clinical practice guidelines program was discussed at the guarantee commission in the presence of the Minister of Health. Olga Richterová, a member of the Chamber of Deputies has written two interpellations about this, one to Minister of Health and one to the Minister of Labour and Social affairs.
News here Thread here
Europe Several parliamentary questions were asked regarding the ME/CFS resolution including from Jordi Cañas (Spain, Renew), Kosma Złotowski (Poland, ECR) and Chris MacManus (Ireland, GUE/NGL). The questions ask how the European Commission will follow up on the ME/CFS resolution and whether it will allocate additional funding to research the long-term effects of Covid-19 and the link between the virus and ME/CFS.
Thread (with links to each of the questions) here
..................
Trial by Error by David Tuller
NICE on Exercise and Post-Covid Syndrome
A useful writeup on NICE's statement that recommendations of graded exercise therapy as fatigue treatment should not necessarily be applied to patients with fatigue following Covid-19. Tuller warns there is unfortunately still risk for post Covid fatigue being subjected to a "failed biospychosocial template".
Article here Thread here
.................
Covid-19 and ME
ME Association "Clinician’s Letter to NICE Results in Statement on Graded Exercise for Post-Covid-Syndrome"
Drs Charles Shepherd and William Weir wrote a letter to NICE several weeks ago, signed by other clinicians on the ME/CFS NICE guideline committee, warning of the dangers of using the ME/CFS guideline on GET for post Covid patients. This resulted in the short statement from NICE (see last week's news). The article also reports Prof. Paul Garner urging clinicians to advise pacing, not GET for post Covid patients, based on his own and other patients' experience.
Article here Thread here
The Bunker (Podcast) "Long COVID" - A new and hidden crisis
Interview with Prof. Paul Garner who talks about his experience with long Covid. He says the NICE guidelines on increasing exercise was completely inappropriate for him. What has helped him most is ME literature and learning about pacing. Duration 29 min.
Thread with link to episode here
The Conversation "Coronavirus: why are some people experiencing long-term fatigue?"
Prof. Frances Williams writes about some of the research on post covid fatigue and other post viral fatigue. She links to the Continuing Professional Development (CPD) course on ME/CFS at StudyPRN, by Dr Nina Muirhead, and stresses the importance of rest and pacing for patients.
Article here Thread here
Latin Post "Fauci Warns Chronic Fatigue-Like-Syndrome Lingering For Months or Years Among Young COVID-19 Patients"
Article refers to a recent interview of Dr. Anthony Fauci by Mark Zuckerberg where Fauci says some young people who tested positive from the coronavirus now suffer from post infection syndromes similar of CFS.
Article here Thread here
The Scientist "Could Covid-19 Trigger Chronic Disease in Some People?"
Article interviews among others ME researchers Avindra Nath, Alain Moreau and Mady Hornig. Avindra Nath (NIH) urges more resources to be allocated to research into ME and to "get lots of people interested in studying these patients".
Article here Thread here
Medscape Fauci to Medscape: "We're All In It Together and We're Gonna Get Through It"
An audio interview with Dr. Anthony Fauci about the pandemic. The interview lasts 43 minutes and is also available as a transcript. Dr. Fauci says that we need to be careful and that: "... it's extraordinary how many people have a post viral syndrome that's very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome".
Article here Thread here
...............
Podcasts, articles, videos
Podcast "How To Exercise If You Have Chronic Fatigue"
The Dr. Ruscio podcast interviewed Dr. Nancy Klimas, ME/CFS researcher and clinician. Apparently the interview covered more topics than the title suggests. The website has a text summary of the interview in addition to audio.
Website here Thread here
A Life Hidden "The Uncertainty of Life After Lockdown"
Another beautifully written article from Naomi Whittingham. This time on mixed emotions as society is opening up again and how inappropriate psychological therapy in the past has resulted into difficulties trusting her own judgement today when deciding upon what are the right precautions for her.
Article here Thread here
Video "CBT therapy for CFS. Why is it controversial? Medical Research and my Experience". Elinor Brown, a student with CFS describes her experience of a combination of antidepressants and CBT helping her with her comorbid depression and anxiety, but having no effect on her CFS symptoms.
Duration: 11 minutes.
Video here Thread here
............
Useful resources
MDPI Healthcare
"Severe ME in children" by Nigel Speight.
Dr Speight uses case reports of children diagnosed with severe ME to describe good and bad treatment and outcomes. He points to the danger of referral to doctors, especially psychiatrists, who do not understand ME and may misdiagnose Fabricated and Induced Illness. He describes the dangers of GET, and problems of medical neglect. Care including home visits from doctors, symptomatic treatment and rest are recommended.
Article here Thread here
..................
Research
Frontiers in Neuroscience - Autonomic Neuroscience
"Cognitive Function Declines Following Orthostatic Stress in Adults With ME/CFS" by van Campen et al.
Previous studies had shown cognitive dysfunction during head-up tilt testing (HUT) in people with ME/CFS. This study of 128 ME/CFS patients showed a decline on a cognitive test when done before and within five minutes after completing a HUT. These results occurred regardless of ME severity or comorbid FM or POTS.
Article here Thread here
GECCO: Genetic and Evolutionary Computation Conference
"Batch Correction of Genomic Data in Chronic Fatigue Syndrome Using CMA-ES" by Rincon et al.
And algorithm was developed 'to optimize the weights of a transformation function for batch correction'. It was tested on mRNA gene expression data from 3 CFS datasets. The authors say it 'remarkably improves the performance of classifiers on the task of diagnosing Chronic Fatigue', and suggest it is a steppingstone towards a reliable diagnostic test.
Article PDF here Thread here
BMJ Open
“Patients’ experiences with fluctuations in persistent physical symptoms: a qualitative study” by Barends et al.
This Dutch research team explored the experience of symptom fluctuation in a sample of 15 patients with medically unexplained symptoms (referred to as persistent physical symptoms). Symptom exacerbations were attributed to overstepping physical limits and/or the impact of negative emotions. Patients mentioned the importance of respecting their physical limits in order to prevent their symptoms from worsening and to experience fewer ups and downs.
Article here Thread here
Upcoming study from Sweden on cell biological/immunometabolic changes in ME. It will include samples from 200 ME patients and 400 controls. The study will also explore covid-19 and the cause of post viral syndromes. Led by Professor Anders Rosén and Eirini Apostolou, PhD, the researchers also include MDs Per Julin, Björn Bragée and Bo C Bertilson and professor Jonas Bergquist. [Edited to add the lead researchers].
Thread with more information here
....................
Coming events
International Association for CFS/ME Registration is now open for the IACFS/ME 2020 Virtual Conference. The conference is scheduled for Friday, August 21, from 10:00 AM to 3:30 PM Eastern Daylight Time (New York City, USA). There is a registration fee.
Details here Thread here
USA On Saturday, August 29th #MEAction will host a seminar for clinicians to discuss diagnostic criteria and management advice for post-viral ME/CFS. This seminar is NOT open to the general public but patients can share the information on social media or send a flyer to their doctor(s).
Details here Thread here
......................
Advocacy action
USA There's a bill pending in the U.S. House that, if passed, would significantly increase the NIH research funding for ME/CFS. Solve M.E. has an created automated process to help people contact their Congressional Representative and urge them to support H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act.
Details here Thread here
UK #MEAction has drafted a letter to be sent to MP's asking for a warning to be placed on the NICE ME/CFS guidelines about graded exercise therapy. The letter highlights the harm caused by exercise, and the implications for people with post Covid-19 fatigue who may develop ME and may be harmed by the current NHS England advice for Covid 'long haulers'.
#MEAction article and letter here Thread here
UK Priority Setting Partnership for ME/CFS
A last chance to apply to join the steering group for this project.
Closing date for applications Monday 20th July.
Details here MEAssociation article here Thread here
Severe ME Day 8th August
UK ME Association: "Raising Awareness of Severe ME – A Call for Your Case Studies". The MEA ask people who have, or have had, severe ME to write a short piece and send with a photo by 25th July.
The 25% ME Group are also asking for personal stories and photos.
MEA Details here 25% ME Group details here Thread here
...............
Fundraising
UK ME Association "A challenge where YOU can help to drive change in medical attitudes towards ME!" The MEA is hoping to raise £30,000 for its medical education scheme. Donations of any size will be invited in December. To start this funderaising campaign they are asking for pledges of at least £100 by 28th August.
Details here Thread here
....................
S4ME social media: Facebook, Twitter and You Tube
Last edited:
Week beginning 20th July 2020 - Part 1
The research section is in part 2 in the next post.
News
Survey The European Federation of Neurological Associations (EFNA) conducted a survey on stigma and neurological disorders. 29% of the respondents (404 people in total) had ME, making it the largest illness group in the survey. Among the notable results, more than half (54%) of ME respondents said they have once delayed or avoided seeking medical advice because they felt embarrassed about their condition.
Survey here Thread here
USA On Thursday, July 23rd, Senator Ed Markey joined ME advocates Rivka Solomon, Ashanti Daniel, Jemel Aguilar, and Claudia Carrera for a Facebook Live event. Referring to pending legislation (HR 7057) Markey said, "I am your advocate...and I am going to work to make sure we get the 60 million dollars" for ME/CFS research. The session was recorded and is available online.
Facebook video here YouTube video here Thread here
...................
Other news, videos, blogs
UK Forward ME Minutes of meeting 10th July. Detailed minutes of topics discussed which included the DecodeME and Priority Setting Partnership projects, medical education, the NICE guidelines, child protection, and Post Covid-19 concerns.
Minutes here ME Research UK summary here Thread here
Health Control "It's not only drugs and medical devices that can cause harm"
Article by Caroline Struthers. A recent report from the Independent Medicines and Medical Devices Safety review recommends a new Patient Safety Commissioner and Redress Agency. They will, however, not be considering potential harm from psychosocial and behavioural interventions. If not changed, this will continue enabling harmful treatments such as GET/CBT for ME.
Article here Thread here
UK People's Book Prize The non-fiction prize has been won by Jessica Taylor Bearman for 'A Girl Behind Dark Glasses'. In an on-line award ceremony, Jessica said: "To be a finalist was an honour, but to win makes me feel like ME sufferers are being heard. I know that the ME community have supported me so much, and I really hope that people take away the seriousness of ME."
Article here Thread here
......................
Useful resources
Dialogues for a neglected illness "Hospital Admission - Issues and alternatives for severely ill ME/CFS patients"
The third excellent Severe ME/CFS video for the "Dialogues for a neglected illness" project. Informative texts and interviews with clinicians, patients and carers reveal the devastating consequences of hospitals not accommodating for severe ME and also how this can be dealt with in better ways. Duration: 15 minutes
Video here Thread here
.......................
Trial by Error by David Tuller
No Evidence for CBT and Other "Conversion Disorder" Therapies
About a Cochrane review titled "Psychosocial interventions for conversion and dissociative disorders in adults" which could not find evidence regarding any treatment effect. The 2010 pilot study on CBT for dissociative seizures (CODES), which Tuller recently has written about, was included in the review.
Article here Thread here
Another Letter About BMJ's Music Therapy Study
David Tuller has sent a letter to BMJ's research integrity coordinator asking for a time frame for their review of, and response to, his criticism of a Norwegian study of CBT and music therapy as treatment of chronic fatigue in adolescents after mononucleosis.
Article here Thread here
Why Won't BMJ Take Action on Music Therapy Study?
A letter from Professors Vincent Racaniello and Mady Hornig to the BMJ's research integrity coordinator asking for "a rapid resolution of the matters to which Dr. Tuller, along with us and other colleagues, first called your attention on 31 May 2020". Article also provides a summary of some of the flaws of the trial.
Article here Thread here
..................
Covid-19 and ME
STAT News "Chronic Fatigue Syndrome may hold keys to understanding post-Covid syndrome"
Opinion piece by David Tuller and Steven Lubet providing background information of how and why ME/CFS is so poorly understood. "We may now be paying the price for this longstanding disregard, given our urgent need for robust information about the possible long-term consequences of a virus that has already infected millions of people..."
Article here Thread here
The BMJ "NICE cautions against using graded exercise therapy for patients recovering from covid-19"
About the recent announcement from NICE that their current advice on GET as treatment for ME may be outdated and inappropriate for patients recovering from covid-19. The article provides information on PEM and the PACE trial. Also tells of Prof. Paul Garner's story after he was infected with covid-19 and his urge for proper centralised guidance on pacing. He now experiences PEM after exercise.
"Garner, who is coordinating editor of the Cochrane Infectious Diseases Group and one of the founders of the Cochrane Collaboration, said that he was “furious” when he read the 2007 NICE advice and the conclusions of the Cochrane review, which also support exercise therapy and mention uncertainty about the side effects of adaptive pacing."
Article here Thread here
Medscape Medics With "Long COVID" Call for Clinical Recognition
About clinicians that got infected with the corona virus and now suffer from serious after-effects. They ask for clinical recognition and more research. The article mentions that "a small number have also been left with chronic fatigue syndrome, which is poorly understood, and can be difficult to treat".
Article here Thread here
Human Events "COVID-19's Long-Term Effects Raise the Stakes of the Game"
Article by Henry I. Miller, M.S., M.D. who writes about the importance of avoiding infection with Covid-19 also due to its long-term consequences. He uses long-term adverse effects resembling of ME/CFS as example. He provides an introduction to ME/CFS and underlines the importance of prioritising research into "the pathophysiology of both the acute viral infection and its relationship to ME/CFS and other sequelae".
Article here Thread here
Each Other (journalism website) "Covid And Chronic Fatigue: We Must Learn From ME Patients’ Suffering" by Danni Watts.
The author describes the stigma and mistreatment of people with ME, including NICE still recommending GET, and highlights the case of Gigi Joseph-Garrison and her parents' 'appalling struggle to convince hospital staff her illness was not psychological.' The article concludes: 'Like all patients, we must treat people suffering long-term effects of Covid-19 with dignity, compassion and care – everything which ME patients have been denied. I live in hope that one day we can extend this care to ME patients, like me, too.'
Article here Thread here
UK - ITV News "What is Long Covid?"
Interview with film director Gez Medinger and with MD Sarah Jarvis. Medinger contracted the corona virus and is now suffering from long term symptoms. Dr. Jarvis says post covid symptoms are similar of ME. She warns against trying too much too soon and recommends pacing. Duration: 6 minutes
Interview here (YouTube) Thread here
Chicago Tribune COVID-19 patients could be at risk for chronic fatigue syndrome: "Your whole life can change if you get this"
Interview with ME sufferer and patient advocate Sanna Stella who advises patients with post virus symptoms to not push themselves. Dr. Leonard Jason says "if researchers get out ahead of this now, the medical field can start finding ways of accommodating people with post-viral fatigue.."
Article here Thread here
......................
Coming events
USA - Solve ME Webinar Thursday, July 30th
The You + M.E. Registry and Biobank is a collection of USA patient-reported data and biosamples (e.g. blood) from people living with ME/CFS and healthy controls. In this webinar, the Chief Scientific Officer, Dr. Sadie Whittaker, and new Solve M.E. CEO, Oved Amitay, will take a closer look at what the registry has to offer, and how to make the most it.
Register here Thread here
USA - Interagency ME/CFS Working Group Tuesday, August 11th
Led by NIH and CDC, U.S. Agencies are coming together to coordinate their efforts and facilitate stakeholder input through the new Interagency ME/CFS Working group. The first meeting will be VideoCast.
Details here Thread here
Solve M.E. webinar Thursday, August 27th
"Will COVID-19 lead to ME/CFS in some people?
Join Dr. Anthony L. Komaroff for a discussion of what we know so far about the connection between COVID-19 and ME/CFS, questions we should be asking, and the research efforts that are forming in response to this unique opportunity to understand post-viral illness."
Register here Thread here
......................
See the next post for the research section.
The research section is in part 2 in the next post.
News
Survey The European Federation of Neurological Associations (EFNA) conducted a survey on stigma and neurological disorders. 29% of the respondents (404 people in total) had ME, making it the largest illness group in the survey. Among the notable results, more than half (54%) of ME respondents said they have once delayed or avoided seeking medical advice because they felt embarrassed about their condition.
Survey here Thread here
USA On Thursday, July 23rd, Senator Ed Markey joined ME advocates Rivka Solomon, Ashanti Daniel, Jemel Aguilar, and Claudia Carrera for a Facebook Live event. Referring to pending legislation (HR 7057) Markey said, "I am your advocate...and I am going to work to make sure we get the 60 million dollars" for ME/CFS research. The session was recorded and is available online.
Facebook video here YouTube video here Thread here
...................
Other news, videos, blogs
UK Forward ME Minutes of meeting 10th July. Detailed minutes of topics discussed which included the DecodeME and Priority Setting Partnership projects, medical education, the NICE guidelines, child protection, and Post Covid-19 concerns.
Minutes here ME Research UK summary here Thread here
Health Control "It's not only drugs and medical devices that can cause harm"
Article by Caroline Struthers. A recent report from the Independent Medicines and Medical Devices Safety review recommends a new Patient Safety Commissioner and Redress Agency. They will, however, not be considering potential harm from psychosocial and behavioural interventions. If not changed, this will continue enabling harmful treatments such as GET/CBT for ME.
Article here Thread here
UK People's Book Prize The non-fiction prize has been won by Jessica Taylor Bearman for 'A Girl Behind Dark Glasses'. In an on-line award ceremony, Jessica said: "To be a finalist was an honour, but to win makes me feel like ME sufferers are being heard. I know that the ME community have supported me so much, and I really hope that people take away the seriousness of ME."
Article here Thread here
......................
Useful resources
Dialogues for a neglected illness "Hospital Admission - Issues and alternatives for severely ill ME/CFS patients"
The third excellent Severe ME/CFS video for the "Dialogues for a neglected illness" project. Informative texts and interviews with clinicians, patients and carers reveal the devastating consequences of hospitals not accommodating for severe ME and also how this can be dealt with in better ways. Duration: 15 minutes
Video here Thread here
.......................
Trial by Error by David Tuller
No Evidence for CBT and Other "Conversion Disorder" Therapies
About a Cochrane review titled "Psychosocial interventions for conversion and dissociative disorders in adults" which could not find evidence regarding any treatment effect. The 2010 pilot study on CBT for dissociative seizures (CODES), which Tuller recently has written about, was included in the review.
Article here Thread here
Another Letter About BMJ's Music Therapy Study
David Tuller has sent a letter to BMJ's research integrity coordinator asking for a time frame for their review of, and response to, his criticism of a Norwegian study of CBT and music therapy as treatment of chronic fatigue in adolescents after mononucleosis.
Article here Thread here
Why Won't BMJ Take Action on Music Therapy Study?
A letter from Professors Vincent Racaniello and Mady Hornig to the BMJ's research integrity coordinator asking for "a rapid resolution of the matters to which Dr. Tuller, along with us and other colleagues, first called your attention on 31 May 2020". Article also provides a summary of some of the flaws of the trial.
Article here Thread here
..................
Covid-19 and ME
STAT News "Chronic Fatigue Syndrome may hold keys to understanding post-Covid syndrome"
Opinion piece by David Tuller and Steven Lubet providing background information of how and why ME/CFS is so poorly understood. "We may now be paying the price for this longstanding disregard, given our urgent need for robust information about the possible long-term consequences of a virus that has already infected millions of people..."
Article here Thread here
The BMJ "NICE cautions against using graded exercise therapy for patients recovering from covid-19"
About the recent announcement from NICE that their current advice on GET as treatment for ME may be outdated and inappropriate for patients recovering from covid-19. The article provides information on PEM and the PACE trial. Also tells of Prof. Paul Garner's story after he was infected with covid-19 and his urge for proper centralised guidance on pacing. He now experiences PEM after exercise.
"Garner, who is coordinating editor of the Cochrane Infectious Diseases Group and one of the founders of the Cochrane Collaboration, said that he was “furious” when he read the 2007 NICE advice and the conclusions of the Cochrane review, which also support exercise therapy and mention uncertainty about the side effects of adaptive pacing."
Article here Thread here
Medscape Medics With "Long COVID" Call for Clinical Recognition
About clinicians that got infected with the corona virus and now suffer from serious after-effects. They ask for clinical recognition and more research. The article mentions that "a small number have also been left with chronic fatigue syndrome, which is poorly understood, and can be difficult to treat".
Article here Thread here
Human Events "COVID-19's Long-Term Effects Raise the Stakes of the Game"
Article by Henry I. Miller, M.S., M.D. who writes about the importance of avoiding infection with Covid-19 also due to its long-term consequences. He uses long-term adverse effects resembling of ME/CFS as example. He provides an introduction to ME/CFS and underlines the importance of prioritising research into "the pathophysiology of both the acute viral infection and its relationship to ME/CFS and other sequelae".
Article here Thread here
Each Other (journalism website) "Covid And Chronic Fatigue: We Must Learn From ME Patients’ Suffering" by Danni Watts.
The author describes the stigma and mistreatment of people with ME, including NICE still recommending GET, and highlights the case of Gigi Joseph-Garrison and her parents' 'appalling struggle to convince hospital staff her illness was not psychological.' The article concludes: 'Like all patients, we must treat people suffering long-term effects of Covid-19 with dignity, compassion and care – everything which ME patients have been denied. I live in hope that one day we can extend this care to ME patients, like me, too.'
Article here Thread here
UK - ITV News "What is Long Covid?"
Interview with film director Gez Medinger and with MD Sarah Jarvis. Medinger contracted the corona virus and is now suffering from long term symptoms. Dr. Jarvis says post covid symptoms are similar of ME. She warns against trying too much too soon and recommends pacing. Duration: 6 minutes
Interview here (YouTube) Thread here
Chicago Tribune COVID-19 patients could be at risk for chronic fatigue syndrome: "Your whole life can change if you get this"
Interview with ME sufferer and patient advocate Sanna Stella who advises patients with post virus symptoms to not push themselves. Dr. Leonard Jason says "if researchers get out ahead of this now, the medical field can start finding ways of accommodating people with post-viral fatigue.."
Article here Thread here
......................
Coming events
USA - Solve ME Webinar Thursday, July 30th
The You + M.E. Registry and Biobank is a collection of USA patient-reported data and biosamples (e.g. blood) from people living with ME/CFS and healthy controls. In this webinar, the Chief Scientific Officer, Dr. Sadie Whittaker, and new Solve M.E. CEO, Oved Amitay, will take a closer look at what the registry has to offer, and how to make the most it.
Register here Thread here
USA - Interagency ME/CFS Working Group Tuesday, August 11th
Led by NIH and CDC, U.S. Agencies are coming together to coordinate their efforts and facilitate stakeholder input through the new Interagency ME/CFS Working group. The first meeting will be VideoCast.
Details here Thread here
Solve M.E. webinar Thursday, August 27th
"Will COVID-19 lead to ME/CFS in some people?
Join Dr. Anthony L. Komaroff for a discussion of what we know so far about the connection between COVID-19 and ME/CFS, questions we should be asking, and the research efforts that are forming in response to this unique opportunity to understand post-viral illness."
Register here Thread here
......................
See the next post for the research section.
Week beginning 20th July 2020 - Part 2
Research
PLOS ONE
"Plasma proteomic profiling suggests an association between antigen driven clonal B cell expansion and ME/CFS" by Lipkin et al.
Analysis of the plasma proteomes of 39 ME/CFS patients and 41 healthy controls revealed a significant association between ME/CFS and the immunoglobulin heavy variable (IGHV) region 3-23/30. Stratifying those patients with and without self-reported irritable bowel syndrome showed some difference. 'Our findings are consistent with a significant association of ME/CFS with immune dysregulation and highlight the potential use of the plasma proteome as a source of biomarkers for disease.'
Paper here Thread here
Brain, Behavior & Immunity - Health
"Autoantibodies to Beta-Adrenergic and Muscarinic cholinergic receptors in ME patients – a validation study in plasma and cerebrospinal fluid from two Swedish cohorts" by Bynke, Bergquist et al.
Some significant differences were found in plasma levels of antibodies between patients and controls, validating earlier findings, but none were found in CSF, and no association was found between antibody levels and symptom severity levels on questionnaires.
Paper here Thread here
Work
The research articles on ME/CFS in the special edition of the scientific journal ‘Work’ have now become open-access (free to read).
Articles here Thread here
Work
"Graded exercise therapy doesn’t restore the ability to work in ME/CFS. Rethinking of a Cochrane review" by Vink & Vink-Niese.
Former physician and severe ME patient Mark Vink has published a detailed critique of the amended Cochrane review on exercise therapy for ME/CFS. The authors note multiple flaws in the review including “badly matched control groups, relying on an unreliable fatigue instrument as primary outcome, outcome switching, p-hacking, ignoring evidence of harms.” The authors also highlight that exercise therapy does not restore the ability to work.
Article here Thread here
Psychological Medicine
“Associations of physical and psychiatric conditions with chronic fatigue syndrome in Germany: an exploratory case-control study” by Jacob et al.
The authors used a large cohort of 19 800 German adults to study to investigate the associations of physical and psychiatric conditions with CFS. The results indicate that cancer, sleep disorders, and depression were strongly and positively associated with CFS.
Article here Thread here
Fatigue: Biomedicine, Health & Behavior
"ME outbreaks can be modelled as an infectious disease: a mathematical reconsideration of the Royal Free Epidemic of 1955" by Waters et al.
The authors apply a mathematical model for the spread of diseases to the Royal Free Hospital ME outbreak of 1955 and other cluster outbreaks. They conclude: 'By showing that the Royal Free and other ME attributed outbreaks fit the SIR disease model, we demonstrate that the McEvedy and Beard hysteria hypothesis is mathematically incorrect.'
Article here Thread here
ES Journal of Nutritional Health
"A Proposal for Explaining Progression from Light/Moderate to Severe Chronic Fatigue" by A. Höck.
The author discusses some of the biomedical ME/CFS research findings and suggests that nutritional deficiencies, particularly of Vitamin D3 cause mild idiopathic chronic fatigue to become severe ME.
Article here Thread here
.......................
Study participation
Australia From the Emerge Australia website: 'The ANCHOR project aims to estimate the number of people in Australia living with ME/CFS, and the social and economic burden of ME/CFS for individuals, their families and carers (both formal and informal), and Australian society more generally.'
'We invite people with ME/CFS and carers of people with ME/CFS to participate in online focus groups and/or interviews where we will ask questions and listen to people with ME/CFS and their carers about their lived experience of the disease.'
Details here Thread here
........................
S4ME social media: Facebook, Twitter and You Tube
......................
Research
PLOS ONE
"Plasma proteomic profiling suggests an association between antigen driven clonal B cell expansion and ME/CFS" by Lipkin et al.
Analysis of the plasma proteomes of 39 ME/CFS patients and 41 healthy controls revealed a significant association between ME/CFS and the immunoglobulin heavy variable (IGHV) region 3-23/30. Stratifying those patients with and without self-reported irritable bowel syndrome showed some difference. 'Our findings are consistent with a significant association of ME/CFS with immune dysregulation and highlight the potential use of the plasma proteome as a source of biomarkers for disease.'
Paper here Thread here
Brain, Behavior & Immunity - Health
"Autoantibodies to Beta-Adrenergic and Muscarinic cholinergic receptors in ME patients – a validation study in plasma and cerebrospinal fluid from two Swedish cohorts" by Bynke, Bergquist et al.
Some significant differences were found in plasma levels of antibodies between patients and controls, validating earlier findings, but none were found in CSF, and no association was found between antibody levels and symptom severity levels on questionnaires.
Paper here Thread here
Work
The research articles on ME/CFS in the special edition of the scientific journal ‘Work’ have now become open-access (free to read).
Articles here Thread here
Work
"Graded exercise therapy doesn’t restore the ability to work in ME/CFS. Rethinking of a Cochrane review" by Vink & Vink-Niese.
Former physician and severe ME patient Mark Vink has published a detailed critique of the amended Cochrane review on exercise therapy for ME/CFS. The authors note multiple flaws in the review including “badly matched control groups, relying on an unreliable fatigue instrument as primary outcome, outcome switching, p-hacking, ignoring evidence of harms.” The authors also highlight that exercise therapy does not restore the ability to work.
Article here Thread here
Psychological Medicine
“Associations of physical and psychiatric conditions with chronic fatigue syndrome in Germany: an exploratory case-control study” by Jacob et al.
The authors used a large cohort of 19 800 German adults to study to investigate the associations of physical and psychiatric conditions with CFS. The results indicate that cancer, sleep disorders, and depression were strongly and positively associated with CFS.
Article here Thread here
Fatigue: Biomedicine, Health & Behavior
"ME outbreaks can be modelled as an infectious disease: a mathematical reconsideration of the Royal Free Epidemic of 1955" by Waters et al.
The authors apply a mathematical model for the spread of diseases to the Royal Free Hospital ME outbreak of 1955 and other cluster outbreaks. They conclude: 'By showing that the Royal Free and other ME attributed outbreaks fit the SIR disease model, we demonstrate that the McEvedy and Beard hysteria hypothesis is mathematically incorrect.'
Article here Thread here
ES Journal of Nutritional Health
"A Proposal for Explaining Progression from Light/Moderate to Severe Chronic Fatigue" by A. Höck.
The author discusses some of the biomedical ME/CFS research findings and suggests that nutritional deficiencies, particularly of Vitamin D3 cause mild idiopathic chronic fatigue to become severe ME.
Article here Thread here
.......................
Study participation
Australia From the Emerge Australia website: 'The ANCHOR project aims to estimate the number of people in Australia living with ME/CFS, and the social and economic burden of ME/CFS for individuals, their families and carers (both formal and informal), and Australian society more generally.'
'We invite people with ME/CFS and carers of people with ME/CFS to participate in online focus groups and/or interviews where we will ask questions and listen to people with ME/CFS and their carers about their lived experience of the disease.'
Details here Thread here
........................
S4ME social media: Facebook, Twitter and You Tube
......................
Week beginning 27th July 2020
News
Music album release The album – ‘It’s Still M.E.’ by Kara Jane Spencer, a singer songwriter with severe ME, will be released on Severe ME day, 8th August. It can be downloaded and streamed wherever you buy your music, with the proceeds being donated to the ME Association’s Ramsay Research Fund.
ME Association article here Kara Jane's website here Thread here
Royal Free 1955 A twitter account with handle @RFH1955 about the historic cluster outbreak of ME at the Royal Free Hospital. "Its purpose will be to act as a newspaper timeline of the 1955 Royal Free Hospital outbreak - 65 years to the day when each headline appeared in the papers".
Twitter account here Thread here
"I have an advocate in Ed Markey"
The Daily Hampshire Gazette, a New England area newspaper, has published a letter to the editor written by long-time ME/CFS advocate Rivka Solomon.
Letter here Thread here
USA A new video with the title What is ME/CFS? has been released by the Bateman Horne Center. From the description: "Although the content is geared towards healthcare professionals, this video serves as an educational tool to assist family members, employers, teachers, and members of the general public ..." Duration 6 min.
Video here Thread here
...................
Trial by Error by David Tuller
Disinformation About Treatments for Post-Covid Syndrome
Concerns over CBT/GET being promoted as treatment approach to patients with post-Covid syndrome. "... no one should be offering solutions based on bogus and debunked claims of treatment success".
Article here Thread here
....................
Covid-19 and ME
UK ME Association "Update: Post-Covid Fatigue, Post/Long-Covid Syndromes, and ME/CFS" by Dr Charles Shepherd.
Dr Shepherd responds to concerns from some people with ME that Long Covid sufferers will get preferential treatment with NICE and the NHS compared with people with ME. He suggests research may help both groups, and provides an update dividing long Covid sufferers into 3 groups - post intensive care problems, ongoing Covid symptoms, and PVFS and ME symptoms.
Article here Thread here
The Science Bit "Post-Covid syndrome, Myalgic Encephalomyelitis, and the recurring pseudoscience of mass hysteria" by Prof Brian Hughes
Excellent article by professor in Psychology Brian Hughes on how disease outbreaks have been claimed as mass hysteria, using the 1955 outbreak at London's Royal Free Hospital, ME and Covid "long-haulers" as examples. "People with ME have been waiting decades for their dignity. It is a tantalising but poignant reality that COVID-19, in creating a cohort of post-viral long-haulers, may now be the event that finally brings attention to their plight".
Article here Thread here
Anil van der Zee "Your silence is killing M.E."
Another excellent blog post by Anil van der Zee, ME sufferer and forum member. "It took far too long to declare HIV a public health priority, to develop lifesaving drugs and deliver them to those in need of them most. Sadly ME has never been a public health priority and we are now seeing how this passivity towards this disease is biting us all big time in the bud; passivity, that much like in the early days of the HIV/AIDS crisis, proved a fatal mistake".
Article here Thread here
Der Tagesspiegel Good article from Germany about ME. With the pandemic and the possibility for it leading to more ME sufferers as background, the journalist tells the story of her friend Nora. How she became ill with ME and the devastating consequences of her disease.
Article here Thread here
Inside Sources "Warp Speed Help for COVID Long Haulers and ME/CFS"
Great article by patient advocate Rivka Solomon urging a scale up of research efforts into ME. "Do it for the millions disabled by ME/CFS. Do it for those newly afflicted with COVID, now at risk of getting LongCovid, and potentially ME/CFS".
Article here Thread here
MedRxiv preprint
"Persistent fatigue following SARS-CoV-2 infection is common and independent of severity of initial infection" by Townsend et al
128 participants, more than half reported fatigue at 10 weeks post infection (Chalder Fatigue Questionnaire). No association was found with severity of infection or inflammatory biomarkers. Association was found with female gender and pre-existing diagnosis of depresson/anxiety.
Article here Thread here
British Medical Journal letters
"Covid-19 and chronic fatigue" by Williams, Muirhead, Pariante
The authors highlight the need for doctors to understand the experiences of long Covid patients with chronic fatigue as described by Salisbury, and link to the medical education module on ME/CFS by Dr Nina Muirhead.
Salisbury article here Letter here Thread here
Other articles of interest
The Guardian "I'm a Covid-19 'long-hauler'. For us, there is no end in sight" by Jemma Kennedy.
Opinion piece here Thread here
World Neurology "Long-Haul COVID" by Avindra Nath MD and B. Jeanne Billioux MD
Article here Thread here
The Wall Street Journal "Suffering From Covid for Months - and Battling Murky Test Results Too"
Article here (Paywalled) Thread here
BMJ "What exactly is mild covid-19?" by prof Nisreen A Alwan
Article here Thread here
Science "From 'brain fog' to heart damage, COVID-19's lingering problems alarm scientists"
Article here Thread here
.....................
Research news
UK Invest in ME Research
Press release announces an increase in funding for research at the Norwich Research Park from the previously announced £500,000 to £625,000. 'The new pledge will cover the required funding for a clinical trial of Faecal Microbiota Transplantation (FMT) that will be performed alongside other high-quality biomedical research at the Quadram Institute'.
Press release here Thread here
Europe 4 million euros have been allocated to an Innovative Training Network (ITN) on functional disorders and medically unexplained symptoms. The project is called ETUDE, Encompassing Training in Functional Disorders across Europe, and will be coordinated by the academic hospital in Groningen, The Netherlands. One of the researchers behind the project is Judith Rosmalen.
Article here Thread here
Columbia University Center for Solutions for ME/CFS
"A Proteomics Study from the Center: Searching for the Criminal" by Dr. Anthony Komaroff.
Article about the study reported last week 'Plasma proteomic profiling suggests an association between antigen driven clonal B cell expansion and ME/CFS.' Komaroff reports the findings and discusses the implications for testing and treatment.
Article here Thread here
UK - ME Association 'Meet The Scientist: Professor Chris Ponting – DecodeME' by Dylan Murphy. Discussion of Prof Ponting's interest in ME, the planned study and the importance of patient involvement.
Article here Thread here
Video 'Amy Proal speaks with Mike VanElzakker about his research on the illness ME/CFS, with a focus on the neuroimaging techniques he uses to search for neuroinflammation in patients with the disease.' Duration 45 minutes.
Video here Thread here
New Zealand Otago University
"Retirement with a twist for extolled Professor".
Biochemistry professor and ME researcher, Warren Tate, has officially retired but intends to continue his work.
Article here Thread here
....................
Biomedical research
Journal of Clinical Medicine
"ME/CFS: Efficacy of Repeat Immunoadsorption" by Scheibenbogen et al.
5 ME/CFS patients who had clinical improvement following previous treatment with a five-day IA were retreated about two years later with a modified IA protocol. The treatment was well tolerated and 80–90% decline of total IgG and ß2AR-AB was achieved. 4 showed rapid improvement in several clinical symptoms, one did not improve.
Paper here Thread here
Brain Sciences
"Machine Learning Detects Pattern of Differences in Functional Magnetic Resonance Imaging (fMRI) Data between Chronic Fatigue Syndrome (CFS) and Gulf War Illness (GWI)" by Baranuik et al.
80 GWI (majority male) and 38 CFS (majority female) were assessed on a memory task before and after exercise. 'We concluded that CFS and GWI are significantly differentiable using a pattern of fMRI activity based on an ensemble machine learning model.'
Article here Thread here
Journal of Translational Medicine
"A systematic review of mitochondrial abnormalities in ME/CFS/systemic exertion intolerance disease" by Holden et al.
19 papers were included which investigated mitochondrial structural and functional differences in ME/CFS/SEID patients compared with healthy controls. The authors conclude that 'it is difficult to establish the role of mitochondria in the pathomechanisms of ME/CFS/SEID due to inconsistencies across the studies.'
Article here Thread here
Canadian Journal of Pain
"Case report: Association of small-fiber polyneuropathy with three previously unassociated rare missense SCN9A variants" by Kelly and Oaklander.
A patient with ME/CFS and small-fiber poyneuropathy improved with immunotherapy over several years. The authors conclude: 'These cases newly associate three novel amino acid–substituting SCN9A variants with immunotherapy-responsive neuropathy. Only larger studies can determine whether these are contributory or coincidental...'
Article here Thread here
....................
Other research
Utrecht University
"Comforting factors that influence the severity of fatigue and other somatic symptoms from the perspective of individuals with chronic fatigue syndrome: A concept mapping study" by Overgaauw
This master thesis by Eefje Overgaauw tried to study the underlying hierarchical structure of ‘soothing influences’ (such as music, social support, mindfulness etc.) on somatic symptoms from the perspective of individuals with CFS. However, only 7 patients with CFS provided relevant data.
Thesis here Thread here
JAMA
“Health Care Use and Costs of Children, Adolescents, and Young Adults With Somatic Symptom and Related Disorders” by Saunders et al.
This study looked at the healthcare utilization and costs of children and adolescents with ‘Somatic Symptom and Related Disorders’(SSRD). The authors define SSRD as disorders where psychological or emotional distress is experienced through physical symptoms and write that “there is overlap in the diagnostic classification of SSRDs with other conditions, such as fibromyalgia, irritable bowel syndrome, and chronic fatigue syndrome.”
Article here Thread here
In an invited commentary to this paper, Robert C Smith argues that severe unexplained symptoms should be seen as red flags prompting physicians to look for an associated depressive or anxiety disorder
Commentary here
University of Salamanca
In this Spanish review of GET and CBT for CFS, the author Cristina Polo Ferrandez argues that most studies have found positive effects and that therefore both treatments are safe and effective treatments for patients with CFS.
Article here Thread here
.....................
Coming events
USA On Friday, August 7, at 11:00 am Pacific Time, #MEAction will host a seminar called ME/CFS and COVID-19: Whats the connection? This seminar is only for post-COVID-19 “long haulers” - patients with suspected or confirmed SARS-CoV-2 infection with symptoms lasting two months or longer. Registration required.
Details here Thread here
Severe ME day Saturday 8th August.
A day to draw public attention to the suffering of those with severe ME, to honour them, and to remember those who have died. "The 25% ME Group celebrates its 25th anniversary this year. As part of this, we want to feature sufferers’ short stories/pics of how the illness affects them."
25% ME group stories and pictures here Thread here
.....................
S4ME social media: Facebook, Twitter and You Tube
News
Music album release The album – ‘It’s Still M.E.’ by Kara Jane Spencer, a singer songwriter with severe ME, will be released on Severe ME day, 8th August. It can be downloaded and streamed wherever you buy your music, with the proceeds being donated to the ME Association’s Ramsay Research Fund.
ME Association article here Kara Jane's website here Thread here
Royal Free 1955 A twitter account with handle @RFH1955 about the historic cluster outbreak of ME at the Royal Free Hospital. "Its purpose will be to act as a newspaper timeline of the 1955 Royal Free Hospital outbreak - 65 years to the day when each headline appeared in the papers".
Twitter account here Thread here
"I have an advocate in Ed Markey"
The Daily Hampshire Gazette, a New England area newspaper, has published a letter to the editor written by long-time ME/CFS advocate Rivka Solomon.
Letter here Thread here
USA A new video with the title What is ME/CFS? has been released by the Bateman Horne Center. From the description: "Although the content is geared towards healthcare professionals, this video serves as an educational tool to assist family members, employers, teachers, and members of the general public ..." Duration 6 min.
Video here Thread here
...................
Trial by Error by David Tuller
Disinformation About Treatments for Post-Covid Syndrome
Concerns over CBT/GET being promoted as treatment approach to patients with post-Covid syndrome. "... no one should be offering solutions based on bogus and debunked claims of treatment success".
Article here Thread here
....................
Covid-19 and ME
UK ME Association "Update: Post-Covid Fatigue, Post/Long-Covid Syndromes, and ME/CFS" by Dr Charles Shepherd.
Dr Shepherd responds to concerns from some people with ME that Long Covid sufferers will get preferential treatment with NICE and the NHS compared with people with ME. He suggests research may help both groups, and provides an update dividing long Covid sufferers into 3 groups - post intensive care problems, ongoing Covid symptoms, and PVFS and ME symptoms.
Article here Thread here
The Science Bit "Post-Covid syndrome, Myalgic Encephalomyelitis, and the recurring pseudoscience of mass hysteria" by Prof Brian Hughes
Excellent article by professor in Psychology Brian Hughes on how disease outbreaks have been claimed as mass hysteria, using the 1955 outbreak at London's Royal Free Hospital, ME and Covid "long-haulers" as examples. "People with ME have been waiting decades for their dignity. It is a tantalising but poignant reality that COVID-19, in creating a cohort of post-viral long-haulers, may now be the event that finally brings attention to their plight".
Article here Thread here
Anil van der Zee "Your silence is killing M.E."
Another excellent blog post by Anil van der Zee, ME sufferer and forum member. "It took far too long to declare HIV a public health priority, to develop lifesaving drugs and deliver them to those in need of them most. Sadly ME has never been a public health priority and we are now seeing how this passivity towards this disease is biting us all big time in the bud; passivity, that much like in the early days of the HIV/AIDS crisis, proved a fatal mistake".
Article here Thread here
Der Tagesspiegel Good article from Germany about ME. With the pandemic and the possibility for it leading to more ME sufferers as background, the journalist tells the story of her friend Nora. How she became ill with ME and the devastating consequences of her disease.
Article here Thread here
Inside Sources "Warp Speed Help for COVID Long Haulers and ME/CFS"
Great article by patient advocate Rivka Solomon urging a scale up of research efforts into ME. "Do it for the millions disabled by ME/CFS. Do it for those newly afflicted with COVID, now at risk of getting LongCovid, and potentially ME/CFS".
Article here Thread here
MedRxiv preprint
"Persistent fatigue following SARS-CoV-2 infection is common and independent of severity of initial infection" by Townsend et al
128 participants, more than half reported fatigue at 10 weeks post infection (Chalder Fatigue Questionnaire). No association was found with severity of infection or inflammatory biomarkers. Association was found with female gender and pre-existing diagnosis of depresson/anxiety.
Article here Thread here
British Medical Journal letters
"Covid-19 and chronic fatigue" by Williams, Muirhead, Pariante
The authors highlight the need for doctors to understand the experiences of long Covid patients with chronic fatigue as described by Salisbury, and link to the medical education module on ME/CFS by Dr Nina Muirhead.
Salisbury article here Letter here Thread here
Other articles of interest
The Guardian "I'm a Covid-19 'long-hauler'. For us, there is no end in sight" by Jemma Kennedy.
Opinion piece here Thread here
World Neurology "Long-Haul COVID" by Avindra Nath MD and B. Jeanne Billioux MD
Article here Thread here
The Wall Street Journal "Suffering From Covid for Months - and Battling Murky Test Results Too"
Article here (Paywalled) Thread here
BMJ "What exactly is mild covid-19?" by prof Nisreen A Alwan
Article here Thread here
Science "From 'brain fog' to heart damage, COVID-19's lingering problems alarm scientists"
Article here Thread here
.....................
Research news
UK Invest in ME Research
Press release announces an increase in funding for research at the Norwich Research Park from the previously announced £500,000 to £625,000. 'The new pledge will cover the required funding for a clinical trial of Faecal Microbiota Transplantation (FMT) that will be performed alongside other high-quality biomedical research at the Quadram Institute'.
Press release here Thread here
Europe 4 million euros have been allocated to an Innovative Training Network (ITN) on functional disorders and medically unexplained symptoms. The project is called ETUDE, Encompassing Training in Functional Disorders across Europe, and will be coordinated by the academic hospital in Groningen, The Netherlands. One of the researchers behind the project is Judith Rosmalen.
Article here Thread here
Columbia University Center for Solutions for ME/CFS
"A Proteomics Study from the Center: Searching for the Criminal" by Dr. Anthony Komaroff.
Article about the study reported last week 'Plasma proteomic profiling suggests an association between antigen driven clonal B cell expansion and ME/CFS.' Komaroff reports the findings and discusses the implications for testing and treatment.
Article here Thread here
UK - ME Association 'Meet The Scientist: Professor Chris Ponting – DecodeME' by Dylan Murphy. Discussion of Prof Ponting's interest in ME, the planned study and the importance of patient involvement.
Article here Thread here
Video 'Amy Proal speaks with Mike VanElzakker about his research on the illness ME/CFS, with a focus on the neuroimaging techniques he uses to search for neuroinflammation in patients with the disease.' Duration 45 minutes.
Video here Thread here
New Zealand Otago University
"Retirement with a twist for extolled Professor".
Biochemistry professor and ME researcher, Warren Tate, has officially retired but intends to continue his work.
Article here Thread here
....................
Biomedical research
Journal of Clinical Medicine
"ME/CFS: Efficacy of Repeat Immunoadsorption" by Scheibenbogen et al.
5 ME/CFS patients who had clinical improvement following previous treatment with a five-day IA were retreated about two years later with a modified IA protocol. The treatment was well tolerated and 80–90% decline of total IgG and ß2AR-AB was achieved. 4 showed rapid improvement in several clinical symptoms, one did not improve.
Paper here Thread here
Brain Sciences
"Machine Learning Detects Pattern of Differences in Functional Magnetic Resonance Imaging (fMRI) Data between Chronic Fatigue Syndrome (CFS) and Gulf War Illness (GWI)" by Baranuik et al.
80 GWI (majority male) and 38 CFS (majority female) were assessed on a memory task before and after exercise. 'We concluded that CFS and GWI are significantly differentiable using a pattern of fMRI activity based on an ensemble machine learning model.'
Article here Thread here
Journal of Translational Medicine
"A systematic review of mitochondrial abnormalities in ME/CFS/systemic exertion intolerance disease" by Holden et al.
19 papers were included which investigated mitochondrial structural and functional differences in ME/CFS/SEID patients compared with healthy controls. The authors conclude that 'it is difficult to establish the role of mitochondria in the pathomechanisms of ME/CFS/SEID due to inconsistencies across the studies.'
Article here Thread here
Canadian Journal of Pain
"Case report: Association of small-fiber polyneuropathy with three previously unassociated rare missense SCN9A variants" by Kelly and Oaklander.
A patient with ME/CFS and small-fiber poyneuropathy improved with immunotherapy over several years. The authors conclude: 'These cases newly associate three novel amino acid–substituting SCN9A variants with immunotherapy-responsive neuropathy. Only larger studies can determine whether these are contributory or coincidental...'
Article here Thread here
....................
Other research
Utrecht University
"Comforting factors that influence the severity of fatigue and other somatic symptoms from the perspective of individuals with chronic fatigue syndrome: A concept mapping study" by Overgaauw
This master thesis by Eefje Overgaauw tried to study the underlying hierarchical structure of ‘soothing influences’ (such as music, social support, mindfulness etc.) on somatic symptoms from the perspective of individuals with CFS. However, only 7 patients with CFS provided relevant data.
Thesis here Thread here
JAMA
“Health Care Use and Costs of Children, Adolescents, and Young Adults With Somatic Symptom and Related Disorders” by Saunders et al.
This study looked at the healthcare utilization and costs of children and adolescents with ‘Somatic Symptom and Related Disorders’(SSRD). The authors define SSRD as disorders where psychological or emotional distress is experienced through physical symptoms and write that “there is overlap in the diagnostic classification of SSRDs with other conditions, such as fibromyalgia, irritable bowel syndrome, and chronic fatigue syndrome.”
Article here Thread here
In an invited commentary to this paper, Robert C Smith argues that severe unexplained symptoms should be seen as red flags prompting physicians to look for an associated depressive or anxiety disorder
Commentary here
University of Salamanca
In this Spanish review of GET and CBT for CFS, the author Cristina Polo Ferrandez argues that most studies have found positive effects and that therefore both treatments are safe and effective treatments for patients with CFS.
Article here Thread here
.....................
Coming events
USA On Friday, August 7, at 11:00 am Pacific Time, #MEAction will host a seminar called ME/CFS and COVID-19: Whats the connection? This seminar is only for post-COVID-19 “long haulers” - patients with suspected or confirmed SARS-CoV-2 infection with symptoms lasting two months or longer. Registration required.
Details here Thread here
Severe ME day Saturday 8th August.
A day to draw public attention to the suffering of those with severe ME, to honour them, and to remember those who have died. "The 25% ME Group celebrates its 25th anniversary this year. As part of this, we want to feature sufferers’ short stories/pics of how the illness affects them."
25% ME group stories and pictures here Thread here
.....................
S4ME social media: Facebook, Twitter and You Tube