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News in Brief - October 2019
- Thread starter Trish
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- news in brief
Week beginning 30th September 2019
News
Cochrane Review updated The delayed and controversial updated version of the review ''Exercise therapy for Chronic Fatigue Syndrome'' by Larun et al. has been published, along with an editor's note promising a full update starting in 2020. See research section below for more details and links.
European Union On 3 October, Dutch ME patient Evelien Van Den Brink made a powerful speech in the European parliament about the need for biomedical research into ME. Karim Berkouk, representative of the European Commission responded that the European Union does not fund individual diseases but that perhaps they could stimulate ME researchers more to apply to existing funding programs. A video and transcript of the meeting are available.
Video here Thread with transcript here
Germany: On 31 August, the German organization Fatigatio organized a ME/CFS symposium in Stuttgart. Speakers included Prof. Uta Behrends, Dr. Bhupesh Prusty, CEO of the Open Medicine Foundation Linda Tannenbaum and Vice-President European ME Alliance (EMEA) Nancy Van Hoylandt. The main topic of the conference was the connection between a viral trigger and the onset of the severe ME/CFS.
Info here Thread here
...................................
Trial by Error by David Tuller
Where Is Bristol's Review of Professor Crawley's Ethics Missteps?
After Dr Tuller brought several concerns regarding Prof. Crawley's work to the UK Health Research Authority (HRA), it requested Bristol University to conduct an investigation. The report was supposed to be ready by June, but is now three months overdue.
Article here Thread here
...................................
Media, videos, blogs, other news...
UK - Dr Myhill ''My Complaint to the GMC about the PACE authors''.
Dr Myhill writes: ''The Information Commissioner’s Office [ICO] has slapped a Decision Notice on the GMC. The GMC must release the evidence base for its determination not to investigate the PACE authors or admit that there was no evidence base for that decision.''
Article here Thread here
USA A representative for Solve ME/CFS Initiative attended the 2019 Annual Meeting of the Patient-Centered Outcomes Research Institute (PCORI) in Washington, D.C. The PCORI officially came into being in 2010 as part of the Affordable Care Act with a mission to assist patients, clinicians, purchasers, and policymakers to make better-informed healthcare decisions by advancing the quality and relevance of evidence about diseases and health conditions. Solve ME/CFS is working to urge the US Congress to reauthorize the PCORI.
Watch 2019 PCORI talks here Thread here
UK - Huffington Post "I Sometimes Feel Defeated By My Disability - And That's Okay"
Blogger and ME patient Pippa Stacey is balancing a UK campaign for more exercise among people suffering from long-term health condition by telling how she deteriorated after being advised to increase her physical activity level.
Article here Thread here
Australia Australian National University - Science, health and medicine: ''Helping doctors diagnose an invisible illness'' by Amanda Cox.
The article describes ME and the stigma patients suffer, and describes the new biobank as a step towards better diagnosis. “Unfortunately, people with ME/CFS have not only suffered a lack of care from the medical profession, but humiliation as well,” says Dr Lidbury.
Article here Emerge Australia link here Thread here
UK ME/CFS Biobank #Participant perspectives - 200 word stories from biobank participants about living with ME posted on their Facebook page.
They have also posted a 1 minute excerpt from Caroline Kingdon's talk at the recent Hope 4 M.E. & Fibro NI “Frontiers in M.E.” conference.
Thread with link here
UK - A Life Hidden blog by Naomi Whittingham. ''Beneath the surface, Part 2''.
The second of a series of 3 excellent critical articles about the BACME guidelines (the organisation of therapists treating ME in the UK).
''Here, in Part 2, I look more closely at the guidelines’ focus on deconditioning and graded exercise therapy (GET), as well as their failure to address issues of critical importance in severe ME.''
Article here Thread here
Norway "The Norwegian Public Health Institute's controversial ME-science"
Blog post by Nina E. Steinkopf about how NPHI is relying on controversial science and how this is harming ME patients.
Blog post here (in English translation) Thread here
USA A recording of the NIH ME/CFS Advocacy Call from August 19, 2019, has been posted. A transcript of the call is included.
Link here Thread here
#MEAction "Why Civil Disagreement and Respect Are Essential to the ME Movement" by Jenny Horner. Reflections on how to stay constructive when internal tensions arise within the ME advocacy community.
Article here Thread here
.......................................
Biomedical research
Massachusetts General Hospital Clinical Research day
Poster presentation: ''fMRI cerebrovascular responses in CFS, Preliminary findings'' Paula Lara Mejia, VanElzakker et al.
6 people with CFS underwent an fMRI scan at rest and during a breath holding challenge. Some showed impaired cerebrovascular reactivity.
Thread with poster here
............................................
Research methods
Blog post: Turning a blind eye to blinding: Michiel Tack has written a blog post about bias due to a lack of blinding, a frequent issue in ME/CFS research. Using the example of 18th-century mesmerism, Tack argues that randomizing patients into different intervention groups without accounting for the expectations of trial participants constitutes an unfair competition. “Although it is still frequently used today, randomizing patients and organizing a competition to see which intervention causes the largest improvements in reported health, is not a fair test. It’s a competition that can easily be won by interventions that are more aggressive in misleading patients or in instructing them to be more optimistic about their health.”
Blog here Thread here
.................................................
Updated Cochrane review
The review: The updated version of the Cochrane review ''Exercise therapy for chronic fatigue syndrome'' (Larun et al. 2019) has finally been published. The quality of evidence for several results such as serious adverse reactions has been downgraded to uncertain but the review still doesn’t include most of the objective outcomes. The conclusion now reads that the results apply to patients diagnosed according to the Fukuda or Oxford criteria and that “patients diagnosed using other criteria may experience different effects.”
Article here Thread here
Editor's note: In an accompanying comment, Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser acknowledges that the updated review does not resolve all questions. She explains that Cochrane is committed to the production of a full update of the Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group. Work on this update will start at the beginning of 2020 and involve partners from patient-advocacy groups.
Editorial comment here
Blog Post by Hilda Bastian: Health consumer advocate and PLOS blogger Hilda Bastian commented on the updated review. Bastian discloses that she had been directly involved in recent negotiations around the fate of the Cochrane review. She argues that the update is an improvement but that the review still over-estimates the strength of the evidence and its applicability. In her blog, Bastian suggests that it would have been reasonable to have the review withdrawn at the time of negotiations.
Blog here Thread here
............................................
Study recruitment
Norway The research group for ME/CFS at Haukeland University Hospital/Bergen University is inviting ME-patients living near Bergen to join a study which includes wearing a Fitbit Charge 3 for 6 months. The purpose is to find better measurement methods for future clinical trials.
Thread with more information here
............................................
Research fund
Australia The Mason Foundation is accepting applications for ME/CFS research grants of up to $120,000 per annum, for up to 3 years. Closing date 5th November 2019.
Details here Thread here
.............................................
Coming events
USA The Massachusetts ME/CFS & FM Association will hold their annual meeting
on Saturday, October 26, 2019. Keynote speaker Michael VanElzakker, PhD, will discuss "ME/CFS at the intersection of the nervous and immune systems."
Link here Thread here
.............................................
S4ME social media: Facebook, Twitter and You Tube
News
Cochrane Review updated The delayed and controversial updated version of the review ''Exercise therapy for Chronic Fatigue Syndrome'' by Larun et al. has been published, along with an editor's note promising a full update starting in 2020. See research section below for more details and links.
European Union On 3 October, Dutch ME patient Evelien Van Den Brink made a powerful speech in the European parliament about the need for biomedical research into ME. Karim Berkouk, representative of the European Commission responded that the European Union does not fund individual diseases but that perhaps they could stimulate ME researchers more to apply to existing funding programs. A video and transcript of the meeting are available.
Video here Thread with transcript here
Germany: On 31 August, the German organization Fatigatio organized a ME/CFS symposium in Stuttgart. Speakers included Prof. Uta Behrends, Dr. Bhupesh Prusty, CEO of the Open Medicine Foundation Linda Tannenbaum and Vice-President European ME Alliance (EMEA) Nancy Van Hoylandt. The main topic of the conference was the connection between a viral trigger and the onset of the severe ME/CFS.
Info here Thread here
...................................
Trial by Error by David Tuller
Where Is Bristol's Review of Professor Crawley's Ethics Missteps?
After Dr Tuller brought several concerns regarding Prof. Crawley's work to the UK Health Research Authority (HRA), it requested Bristol University to conduct an investigation. The report was supposed to be ready by June, but is now three months overdue.
Article here Thread here
...................................
Media, videos, blogs, other news...
UK - Dr Myhill ''My Complaint to the GMC about the PACE authors''.
Dr Myhill writes: ''The Information Commissioner’s Office [ICO] has slapped a Decision Notice on the GMC. The GMC must release the evidence base for its determination not to investigate the PACE authors or admit that there was no evidence base for that decision.''
Article here Thread here
USA A representative for Solve ME/CFS Initiative attended the 2019 Annual Meeting of the Patient-Centered Outcomes Research Institute (PCORI) in Washington, D.C. The PCORI officially came into being in 2010 as part of the Affordable Care Act with a mission to assist patients, clinicians, purchasers, and policymakers to make better-informed healthcare decisions by advancing the quality and relevance of evidence about diseases and health conditions. Solve ME/CFS is working to urge the US Congress to reauthorize the PCORI.
Watch 2019 PCORI talks here Thread here
UK - Huffington Post "I Sometimes Feel Defeated By My Disability - And That's Okay"
Blogger and ME patient Pippa Stacey is balancing a UK campaign for more exercise among people suffering from long-term health condition by telling how she deteriorated after being advised to increase her physical activity level.
Article here Thread here
Australia Australian National University - Science, health and medicine: ''Helping doctors diagnose an invisible illness'' by Amanda Cox.
The article describes ME and the stigma patients suffer, and describes the new biobank as a step towards better diagnosis. “Unfortunately, people with ME/CFS have not only suffered a lack of care from the medical profession, but humiliation as well,” says Dr Lidbury.
Article here Emerge Australia link here Thread here
UK ME/CFS Biobank #Participant perspectives - 200 word stories from biobank participants about living with ME posted on their Facebook page.
They have also posted a 1 minute excerpt from Caroline Kingdon's talk at the recent Hope 4 M.E. & Fibro NI “Frontiers in M.E.” conference.
Thread with link here
UK - A Life Hidden blog by Naomi Whittingham. ''Beneath the surface, Part 2''.
The second of a series of 3 excellent critical articles about the BACME guidelines (the organisation of therapists treating ME in the UK).
''Here, in Part 2, I look more closely at the guidelines’ focus on deconditioning and graded exercise therapy (GET), as well as their failure to address issues of critical importance in severe ME.''
Article here Thread here
Norway "The Norwegian Public Health Institute's controversial ME-science"
Blog post by Nina E. Steinkopf about how NPHI is relying on controversial science and how this is harming ME patients.
Blog post here (in English translation) Thread here
USA A recording of the NIH ME/CFS Advocacy Call from August 19, 2019, has been posted. A transcript of the call is included.
Link here Thread here
#MEAction "Why Civil Disagreement and Respect Are Essential to the ME Movement" by Jenny Horner. Reflections on how to stay constructive when internal tensions arise within the ME advocacy community.
Article here Thread here
.......................................
Biomedical research
Massachusetts General Hospital Clinical Research day
Poster presentation: ''fMRI cerebrovascular responses in CFS, Preliminary findings'' Paula Lara Mejia, VanElzakker et al.
6 people with CFS underwent an fMRI scan at rest and during a breath holding challenge. Some showed impaired cerebrovascular reactivity.
Thread with poster here
............................................
Research methods
Blog post: Turning a blind eye to blinding: Michiel Tack has written a blog post about bias due to a lack of blinding, a frequent issue in ME/CFS research. Using the example of 18th-century mesmerism, Tack argues that randomizing patients into different intervention groups without accounting for the expectations of trial participants constitutes an unfair competition. “Although it is still frequently used today, randomizing patients and organizing a competition to see which intervention causes the largest improvements in reported health, is not a fair test. It’s a competition that can easily be won by interventions that are more aggressive in misleading patients or in instructing them to be more optimistic about their health.”
Blog here Thread here
.................................................
Updated Cochrane review
The review: The updated version of the Cochrane review ''Exercise therapy for chronic fatigue syndrome'' (Larun et al. 2019) has finally been published. The quality of evidence for several results such as serious adverse reactions has been downgraded to uncertain but the review still doesn’t include most of the objective outcomes. The conclusion now reads that the results apply to patients diagnosed according to the Fukuda or Oxford criteria and that “patients diagnosed using other criteria may experience different effects.”
Article here Thread here
Editor's note: In an accompanying comment, Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser acknowledges that the updated review does not resolve all questions. She explains that Cochrane is committed to the production of a full update of the Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group. Work on this update will start at the beginning of 2020 and involve partners from patient-advocacy groups.
Editorial comment here
Blog Post by Hilda Bastian: Health consumer advocate and PLOS blogger Hilda Bastian commented on the updated review. Bastian discloses that she had been directly involved in recent negotiations around the fate of the Cochrane review. She argues that the update is an improvement but that the review still over-estimates the strength of the evidence and its applicability. In her blog, Bastian suggests that it would have been reasonable to have the review withdrawn at the time of negotiations.
Blog here Thread here
............................................
Study recruitment
Norway The research group for ME/CFS at Haukeland University Hospital/Bergen University is inviting ME-patients living near Bergen to join a study which includes wearing a Fitbit Charge 3 for 6 months. The purpose is to find better measurement methods for future clinical trials.
Thread with more information here
............................................
Research fund
Australia The Mason Foundation is accepting applications for ME/CFS research grants of up to $120,000 per annum, for up to 3 years. Closing date 5th November 2019.
Details here Thread here
.............................................
Coming events
USA The Massachusetts ME/CFS & FM Association will hold their annual meeting
on Saturday, October 26, 2019. Keynote speaker Michael VanElzakker, PhD, will discuss "ME/CFS at the intersection of the nervous and immune systems."
Link here Thread here
.............................................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 7th October 2019
....................................................
Trial by Error by David Tuller
More on the Revised Cochrane Review
David Tuller shares a useful compilation made by forum member Michiel Tack of all the changes made in the recent republished Cochrane review on graded exercise as CFS-treatment. It was particularly disappointing that the evidence for fatigue reduction through exercise is considered to have "moderate quality" instead of "low", and that PACE is considered to have low risk of selective reporting bias.
Article here Thread here
............................................
Media, videos, blogs, other news...
Bateman Horne Center video ''Overcoming barriers to access to care''
Dr Bateman talks under 4 headings - ignorance; nature of illness and lack of tools; financial constraints; and immobility and illness severity. She lists some useful resources, and gives tips for making the best use of medical consultations.
Video here (duration 1 hour) Thread here
ME Australia ''Meet the Scientists: Dr Elisha Josev''
Interview with a clinician-researcher investigating short-term and long-term effects of paediatric ME and CFS on brain structure and function.
Article here Thread here
Meet the Scientists: Interview with Australian Catholic University occupational therapists researching living with ME/CFS and occupational disruption.
Article here Thread here
Center for Solutions for ME/CFS "Ask Our Researchers - Video Q&A series"
A short video with Professor Anthony Komaroff summarising the most promising lines of current ME research: cell metabolism, immune system activation and epigenetics. Duration 6 minutes.
Video here Thread here
Cochrane review Commentary and discussion continues about the updated version of the review ''Exercise therapy for Chronic Fatigue Syndrome'' by Larun et al. (see last week's news).
Michiel Tack has detailed the main arguments against the review in a series of forum posts, also published by David Tuller (see above); and JaimeS has written an article for #MEAction.
#MEAction article here Thread here
.............................................
Biomedical research
Current study
''Tracking Peripheral Immune Cell Infiltration of the Brain in Central Inflammatory Disorders Using [Zr-89]Oxinate-4-labeled Leukocytes'' by J McConathy, University of Alabama.
Using brain PET/MRI and an investigational radioactive drug to track the location of leukocytes in the body to investigate neuroinflammation in fibromyalgia, CFS, and multiple sclerosis.
Clinical trials details here Thread here
..................................................
Psychosocial Research
Healthcare
''Differentiating Psychosomatic, Somatopsychic, Multisystem Illnesses and Medical Uncertainty'' by Bransfield & Friedman.
Robert Bransfield and Kenneth Friedman have written an extensive review on differentiating psychosomatic and somatic multisystem illnesses in cases of medical uncertainty. They argue that “a psychiatric diagnosis cannot be given solely based upon the absence of physical, laboratory, or pathological findings.” According to Bransfield and Friedman, “Many 'all in your head' conditions may be related to the microbiome and the immune system.”
Article here Thread here
Journal of Medical Internet Research
''Internet-Based Cognitive Behavioral Therapy for CFS Integrated in Routine Clinical Care: Implementation Study'' by Worm-Smeitink et al.
In this study the Dutch team of Hans Knoop tested whether stepped care for CFS was effective in routine clinical care. In stepped care patients are first offered an internet version of cognitive behavioral therapy (I-CBT) which is followed by face-to face CBT if needed. Worm-Smeitink et al. implemented I-CBT in five mental health care centers with nine treatment sites throughout the Netherlands. 100 patients were treated in the study. Although fatigue severity and disabilities were reduced, reduction of fatigue severity appeared smaller than in the randomized trials.
Article here Thread here
............................................
Advocacy
Sweden #MEvårdsaknas (MEcareMissing)
A protest action for better care for ME patients in Sweden. It was initiated when a promised specialist clinic for ME patients in the Region Västerbotten was cancelled. Includes a petition which will be delivered to the Director of Health at Region Västerbotten.
More information here (in Swedish) Thread here
USA #MEAction has relaunched the Postcards to Doctors project. Patients, along with friends and family, can send handwritten postcards to doctors urging them to take a continuing medical education course on ME.
Announcement here Thread here
USA #MEAction has published "Inside / Outside Activism: Why We Must Shout in the Streets and Sit at the Table" by ACT UP member Jim Eigo. This article discusses different strategies to use for ME advocacy.
Article here Thread here
USA Solve M.E. is creating a new volunteer working group called the Community Advisory Council (CAC). This group will hold online meeting to provide guidance and recommendations on Solve M.E. programs. Nominations for individuals to serve on this council, including self-nominations, will be accepted until December 20, 2019.
Announcement here Thread here
USA #MEAction is seeking patients, caregivers, and allies to join their Board of Directors. They are looking for candidates with "experience volunteering for a nonprofit organization and a passion for #MEAction’s mission." This group meets monthly virtually and once a year in person.
Announcement here Thread here
.............................................
Coming events
Sweden ME/CFS days 2019
The Swedish ME Association (RME) is organising two conferences about ME for the 12th year in a row. The conferences will be held in Stockholm Oct. 16th and in Umeå Oct. 17th. There will be live streaming on YouTube and among the lecturers are Jarred Younger and Jonas Bergquist.
More information here Thread here
Northern Ireland Hope 4 ME and Fibro event, 5 November, 19:00 – 21:00 GMT.
''What happens when design flaws are discovered in U.K. ME/CFS research, and future treatments depend on ethical research?''
Speakers Dr David Tuller and Dr Nigel Speight, with Dr William Weir joining the panel discussion.
Thread with details here
.............................................................
S4ME social media: Facebook, Twitter and You Tube
....................................................
Trial by Error by David Tuller
More on the Revised Cochrane Review
David Tuller shares a useful compilation made by forum member Michiel Tack of all the changes made in the recent republished Cochrane review on graded exercise as CFS-treatment. It was particularly disappointing that the evidence for fatigue reduction through exercise is considered to have "moderate quality" instead of "low", and that PACE is considered to have low risk of selective reporting bias.
Article here Thread here
............................................
Media, videos, blogs, other news...
Bateman Horne Center video ''Overcoming barriers to access to care''
Dr Bateman talks under 4 headings - ignorance; nature of illness and lack of tools; financial constraints; and immobility and illness severity. She lists some useful resources, and gives tips for making the best use of medical consultations.
Video here (duration 1 hour) Thread here
ME Australia ''Meet the Scientists: Dr Elisha Josev''
Interview with a clinician-researcher investigating short-term and long-term effects of paediatric ME and CFS on brain structure and function.
Article here Thread here
Meet the Scientists: Interview with Australian Catholic University occupational therapists researching living with ME/CFS and occupational disruption.
Article here Thread here
Center for Solutions for ME/CFS "Ask Our Researchers - Video Q&A series"
A short video with Professor Anthony Komaroff summarising the most promising lines of current ME research: cell metabolism, immune system activation and epigenetics. Duration 6 minutes.
Video here Thread here
Cochrane review Commentary and discussion continues about the updated version of the review ''Exercise therapy for Chronic Fatigue Syndrome'' by Larun et al. (see last week's news).
Michiel Tack has detailed the main arguments against the review in a series of forum posts, also published by David Tuller (see above); and JaimeS has written an article for #MEAction.
#MEAction article here Thread here
.............................................
Biomedical research
Current study
''Tracking Peripheral Immune Cell Infiltration of the Brain in Central Inflammatory Disorders Using [Zr-89]Oxinate-4-labeled Leukocytes'' by J McConathy, University of Alabama.
Using brain PET/MRI and an investigational radioactive drug to track the location of leukocytes in the body to investigate neuroinflammation in fibromyalgia, CFS, and multiple sclerosis.
Clinical trials details here Thread here
..................................................
Psychosocial Research
Healthcare
''Differentiating Psychosomatic, Somatopsychic, Multisystem Illnesses and Medical Uncertainty'' by Bransfield & Friedman.
Robert Bransfield and Kenneth Friedman have written an extensive review on differentiating psychosomatic and somatic multisystem illnesses in cases of medical uncertainty. They argue that “a psychiatric diagnosis cannot be given solely based upon the absence of physical, laboratory, or pathological findings.” According to Bransfield and Friedman, “Many 'all in your head' conditions may be related to the microbiome and the immune system.”
Article here Thread here
Journal of Medical Internet Research
''Internet-Based Cognitive Behavioral Therapy for CFS Integrated in Routine Clinical Care: Implementation Study'' by Worm-Smeitink et al.
In this study the Dutch team of Hans Knoop tested whether stepped care for CFS was effective in routine clinical care. In stepped care patients are first offered an internet version of cognitive behavioral therapy (I-CBT) which is followed by face-to face CBT if needed. Worm-Smeitink et al. implemented I-CBT in five mental health care centers with nine treatment sites throughout the Netherlands. 100 patients were treated in the study. Although fatigue severity and disabilities were reduced, reduction of fatigue severity appeared smaller than in the randomized trials.
Article here Thread here
............................................
Advocacy
Sweden #MEvårdsaknas (MEcareMissing)
A protest action for better care for ME patients in Sweden. It was initiated when a promised specialist clinic for ME patients in the Region Västerbotten was cancelled. Includes a petition which will be delivered to the Director of Health at Region Västerbotten.
More information here (in Swedish) Thread here
USA #MEAction has relaunched the Postcards to Doctors project. Patients, along with friends and family, can send handwritten postcards to doctors urging them to take a continuing medical education course on ME.
Announcement here Thread here
USA #MEAction has published "Inside / Outside Activism: Why We Must Shout in the Streets and Sit at the Table" by ACT UP member Jim Eigo. This article discusses different strategies to use for ME advocacy.
Article here Thread here
USA Solve M.E. is creating a new volunteer working group called the Community Advisory Council (CAC). This group will hold online meeting to provide guidance and recommendations on Solve M.E. programs. Nominations for individuals to serve on this council, including self-nominations, will be accepted until December 20, 2019.
Announcement here Thread here
USA #MEAction is seeking patients, caregivers, and allies to join their Board of Directors. They are looking for candidates with "experience volunteering for a nonprofit organization and a passion for #MEAction’s mission." This group meets monthly virtually and once a year in person.
Announcement here Thread here
.............................................
Coming events
Sweden ME/CFS days 2019
The Swedish ME Association (RME) is organising two conferences about ME for the 12th year in a row. The conferences will be held in Stockholm Oct. 16th and in Umeå Oct. 17th. There will be live streaming on YouTube and among the lecturers are Jarred Younger and Jonas Bergquist.
More information here Thread here
Northern Ireland Hope 4 ME and Fibro event, 5 November, 19:00 – 21:00 GMT.
''What happens when design flaws are discovered in U.K. ME/CFS research, and future treatments depend on ethical research?''
Speakers Dr David Tuller and Dr Nigel Speight, with Dr William Weir joining the panel discussion.
Thread with details here
.............................................................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 14th October 2019
NICE guideline call for evidence has now closed.
UK #MEAction has submitted a detailed response to the NICE guideline committee's call for evidence on three topics relating to early management and ongoing review of patients with ME, and patients' experiences of treatments. The response included 111 studies, surveys and trials.
Article here Submission here Thread here
UK #MEAction survey results ''ME services in the UK not fit for purpose''.
An online survey of UK people with ME had 1900 respondents in two weeks.
Far more patients receiving initial advice to be more active deteriorated than those advised to do less; patients reported lack of ongoing support; and most wanted current services reorganised or replaced with consultant led clinics and ongoing expert support, not CBT and GET.
The excellent detailed report has been submitted to the NICE guideline committee.
Article here Report here Thread here
.........................................
S4ME news
News from the committee
The Science for ME Management Committee has posted its second annual report to members. It includes sections on membership and activity levels; reports from the committee and moderation teams; financial and technical reports; outreach and social media; and a look forward.
Thread with report here (members only)
The influence of the Cochrane review on GET
Members of the forum have started a thread on the influence of the Cochrane review on graded exercise therapy (GET) for CFS on medical guidelines throughout the world. The review has influenced CFS guidelines in Denmark, Germany, Australia and other countries. Information on France, Spain and other European countries is still lacking.
Thread here
..........................................
Media, videos, blogs, other news...
Science for ME Video Q&A. @Andy interviews Dr Michael VanElzakker, a neuroscience researcher of Massachusetts General Hospital and Harvard Medical School about his research into ME/CFS and related topics. A fascinating glimpse of some of the research using different scans, with preliminary findings of possible hypoperfusion in the brain, and work with patients before and after exercise. Duration 1 hour.
Video here Thread here
UK Action for ME Conference and AGM was held on 15th October and was livestreamed. Highlights included the results of their recent 'big survey' with over 4000 respondents. The majority who had GET reported harms. Issues raised in panel discussion included problems with BPS research, medical training, and reporting harms. AGM reports included pilot advocacy and mentoring projects. The video will be put on You Tube.
Thread here
Canada The ME/FM Society of BC (British Columbia) are launching a new website, HealthFinder4ME.org, to list Canadian health care professionals who are "ME and Fibromyalgia friendly." Recommendations are made by patients. The beta version will focus on British Columbia only, future versions will apply Canada wide.
Announcement here Thread here
ME/CFS Alert LLewellyn King has released a new episode of his show. He interviews OMF Scientific Advisory Board member and Co-director of the OMF-funded Harvard Collaboration, Ronald G. Tompkins, MD, ScD. Dr Tompkins is an engineer as well as a doctor/researcher and discusses some of his work combining these skills, and the collaboration between Harvard and Stanford on ME research.
Video here Thread here
............................................
Biomedical research and hypotheses
Frontiers in Immunology
''Naltrexone restores impaired transient receptor potential melastatin 3 ion channel function in natural killer cells from ME/CFS patients'' by Cabanas et al.
The Griffith University team (Australia) continue their research on ion channels in NK cells using a small number of ME patients and controls. The abstract concludes: 'Our results demonstrate, for the first time, and based on novel patch clamp electrophysiology, potential pharmaco-therapeutic interventions in ME/CFS.'
Paper here Thread here
International Journal of Molecular Sciences
''Neuroimmunology: What Role for Autoimmunity, Neuroinflammation, and Small Fiber Neuropathy in Fibromyalgia, CFS, and Adverse Events after Human Papillomavirus Vaccination?'' by Ryabkova et al.
For CFS the authors ''propose a concept of “autoimmune hypothalamopathy” for its pathogenesis.''
Article here Thread here
Metabolism
''Neuroinflammation disorders exacerbated by environmental stressors'' by O'Callaghan and Miller.
A hypothesis article suggesting CFS, Gulf War Illness and 'chemobrain' are disorders with chronic 'sickness behaviour' symptoms caused by neuroinflammation in the absence of neurodegeneration, and may be caused by exposure to environmental toxins and stressors.
Article here Thread here
Frontiers in Pharmacology
''Open Trial of Vitamin B12 Nasal Drops in Adults With ME/CFS: Comparison of Responders and Non-Responders'' by van Kampen et al.
55 patients used nasal drops for 3 months. Those who felt some improvement had higher B12 at the end, and were a bit more active. Double blind trial needed to see whether these results are real or placebo effect.
Paper here Thread here
USA Patent application
''Methods of treating diseases resulting from a maladapted stress response''.
The makers of the drug Cortene have updated their patent application. They hypothesise that CFS is caused by a maladaptive stress response.
Thread with details here
............................................
Other research
Fatigue: Biomedicine, Health & Behavior
“The DePaul Symptom Questionnaire-2: a validation study” by Bedree et al.
The research team of Leonard Jason at the University of Chicago has created an updated version (DSQ-2) of The DePaul Symptom Questionnaire, a long list of questions that help in making the diagnosis of ME or CFS. DSQ-2 includes all items from the previous version but clarifies some ambiguities and adds extra questions to assess symptoms from more recent diagnostic criteria. The new questionnaire was tested in a sample of 399 patients with ME or CFS. New items to assess post-exertional malaise scored particularly high and dominated the factor analysis.
Article here Thread here
.............................................
Coming events
New Zealand Christchurch, 31st October, 6.45 - 8 pm.
Dr Eiren Sweetman from the University of Otago will overview recent key research findings on ME/CFS.
Thread with details here
.............................................
S4ME social media: Facebook, Twitter and You Tube
NICE guideline call for evidence has now closed.
UK #MEAction has submitted a detailed response to the NICE guideline committee's call for evidence on three topics relating to early management and ongoing review of patients with ME, and patients' experiences of treatments. The response included 111 studies, surveys and trials.
Article here Submission here Thread here
UK #MEAction survey results ''ME services in the UK not fit for purpose''.
An online survey of UK people with ME had 1900 respondents in two weeks.
Far more patients receiving initial advice to be more active deteriorated than those advised to do less; patients reported lack of ongoing support; and most wanted current services reorganised or replaced with consultant led clinics and ongoing expert support, not CBT and GET.
The excellent detailed report has been submitted to the NICE guideline committee.
Article here Report here Thread here
.........................................
S4ME news
News from the committee
The Science for ME Management Committee has posted its second annual report to members. It includes sections on membership and activity levels; reports from the committee and moderation teams; financial and technical reports; outreach and social media; and a look forward.
Thread with report here (members only)
The influence of the Cochrane review on GET
Members of the forum have started a thread on the influence of the Cochrane review on graded exercise therapy (GET) for CFS on medical guidelines throughout the world. The review has influenced CFS guidelines in Denmark, Germany, Australia and other countries. Information on France, Spain and other European countries is still lacking.
Thread here
..........................................
Media, videos, blogs, other news...
Science for ME Video Q&A. @Andy interviews Dr Michael VanElzakker, a neuroscience researcher of Massachusetts General Hospital and Harvard Medical School about his research into ME/CFS and related topics. A fascinating glimpse of some of the research using different scans, with preliminary findings of possible hypoperfusion in the brain, and work with patients before and after exercise. Duration 1 hour.
Video here Thread here
UK Action for ME Conference and AGM was held on 15th October and was livestreamed. Highlights included the results of their recent 'big survey' with over 4000 respondents. The majority who had GET reported harms. Issues raised in panel discussion included problems with BPS research, medical training, and reporting harms. AGM reports included pilot advocacy and mentoring projects. The video will be put on You Tube.
Thread here
Canada The ME/FM Society of BC (British Columbia) are launching a new website, HealthFinder4ME.org, to list Canadian health care professionals who are "ME and Fibromyalgia friendly." Recommendations are made by patients. The beta version will focus on British Columbia only, future versions will apply Canada wide.
Announcement here Thread here
ME/CFS Alert LLewellyn King has released a new episode of his show. He interviews OMF Scientific Advisory Board member and Co-director of the OMF-funded Harvard Collaboration, Ronald G. Tompkins, MD, ScD. Dr Tompkins is an engineer as well as a doctor/researcher and discusses some of his work combining these skills, and the collaboration between Harvard and Stanford on ME research.
Video here Thread here
............................................
Biomedical research and hypotheses
Frontiers in Immunology
''Naltrexone restores impaired transient receptor potential melastatin 3 ion channel function in natural killer cells from ME/CFS patients'' by Cabanas et al.
The Griffith University team (Australia) continue their research on ion channels in NK cells using a small number of ME patients and controls. The abstract concludes: 'Our results demonstrate, for the first time, and based on novel patch clamp electrophysiology, potential pharmaco-therapeutic interventions in ME/CFS.'
Paper here Thread here
International Journal of Molecular Sciences
''Neuroimmunology: What Role for Autoimmunity, Neuroinflammation, and Small Fiber Neuropathy in Fibromyalgia, CFS, and Adverse Events after Human Papillomavirus Vaccination?'' by Ryabkova et al.
For CFS the authors ''propose a concept of “autoimmune hypothalamopathy” for its pathogenesis.''
Article here Thread here
Metabolism
''Neuroinflammation disorders exacerbated by environmental stressors'' by O'Callaghan and Miller.
A hypothesis article suggesting CFS, Gulf War Illness and 'chemobrain' are disorders with chronic 'sickness behaviour' symptoms caused by neuroinflammation in the absence of neurodegeneration, and may be caused by exposure to environmental toxins and stressors.
Article here Thread here
Frontiers in Pharmacology
''Open Trial of Vitamin B12 Nasal Drops in Adults With ME/CFS: Comparison of Responders and Non-Responders'' by van Kampen et al.
55 patients used nasal drops for 3 months. Those who felt some improvement had higher B12 at the end, and were a bit more active. Double blind trial needed to see whether these results are real or placebo effect.
Paper here Thread here
USA Patent application
''Methods of treating diseases resulting from a maladapted stress response''.
The makers of the drug Cortene have updated their patent application. They hypothesise that CFS is caused by a maladaptive stress response.
Thread with details here
............................................
Other research
Fatigue: Biomedicine, Health & Behavior
“The DePaul Symptom Questionnaire-2: a validation study” by Bedree et al.
The research team of Leonard Jason at the University of Chicago has created an updated version (DSQ-2) of The DePaul Symptom Questionnaire, a long list of questions that help in making the diagnosis of ME or CFS. DSQ-2 includes all items from the previous version but clarifies some ambiguities and adds extra questions to assess symptoms from more recent diagnostic criteria. The new questionnaire was tested in a sample of 399 patients with ME or CFS. New items to assess post-exertional malaise scored particularly high and dominated the factor analysis.
Article here Thread here
.............................................
Coming events
New Zealand Christchurch, 31st October, 6.45 - 8 pm.
Dr Eiren Sweetman from the University of Otago will overview recent key research findings on ME/CFS.
Thread with details here
.............................................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 21st October 2019
Part 1. See the next post for the section on research.
News
UK NHS Health Research Authority (HRA)
''Report of a publications review jointly commissioned by the HRA and the University of Bristol''.
David Tuller had reported to the HRA that 11 of Prof. Crawley's research papers had used the same ethics approval reference number.
The panel reported that most of the papers were research, not service evaluation, and agreed that the cited ethics approval did not apply to them, yet they concluded no further ethical approval was required. Inexplicably, they classed the school absence study as service evaluation.
A few minor changes to the publications were required, but no retractions, and, it appears, no disciplinary action.
Announcement here Full report here Thread here
Germany On November 21 to 22 the Charité Fatigue Center Berlin will be organizing its 1st Meeting on Chronic Fatigue in Immune-mediated disorders. The meeting is a non-public event for invited guests. Expected speakers include Carmen Scheibenbogen, Luis Nacul, Bhupesh Prusty, Oystein Fluge, Modra Murovska of the EUROMENE Network and many others.
Flyer here Thread here
Australia The CEO of the Australian Government National Heath and Medical Research Council, Prof Anne Kelso, has written a letter to stakeholders in response to the ME/CFS Advisory Committee's report submitted in April. Kelso says she has ''...decided that NHMRC should develop clinical guidance on ME/CFS.'' She recognises that ''current Australian advice, published by the Royal Australasian College of Physicians in 2002, needs to be updated and replaced.''
Report and letter here Thread here
..................................
Trial by Error by David Tuller
Bristol's Report Due Soon; Slides from My Oxford Talk
In anticipation of the report from Bristol University's investigation regarding concern of prof. Crawley's work, which was due this week (see item above).
The article also includes slides from a talk Tuller just gave in Oxford on Crawley's trial of the "woo-woo Lightning Process".
Article here Thread here and here
....................................
Media, video, blogs, podcast, other news...
UK Sheffield ME and FM group conference was held on 24th October. Speaker Prof. Brian Hughes on 'Controversies and Cock-ups in ME research: The Role of Human Failings'. Topics covered included the replication crisis in research, with human factors such as therapeutic alliegance leading to bias in published research with real world consequences for patients. He discussed the PACE trial, and said the so called biopsychosocial model of ME is actually a psychiatric model.
Talk duration 1hr 4min. Q&A duration 26min.
You tube talk here Q&A here Thread with details here
UK - Open letter to Action for ME. Forum member Trish has written a personal open letter to Sonya Chowdhury, Chief Executive of Action for ME, about their web page about Graded Exercise Therapy which still suggests GET as a treatment approach for patients to consider. Concerns include misuse of evidence on efficacy, misplaced trust in 'experts', and underplaying the seriousness of harm. An alternative version is suggested warning against GET.
Thread with letter here
Broken Battery What is ME?
Forum member Adam pwme has made a 7 minute long video which is a good introduction to ME with useful facts and quotes as well as statements from doctors, patients and advocates.
Thread with video and transcript here
Finland The general broadcast Yle: "Sannin, 15, not the first case: At least three young people with CFS have been assigned to a children's home".
Article about a demonstration held in Tampere, Finland this week protesting against young ME patients being taken from their families. "The situation between families and university hospitals has been controversial for years. An now it's only getting worse".
Article here Thread with google translation of article here
Norway The Norwegian ME Association has written a letter to the editor in a medical newspaper asking for an earmarked allocation for Fluge/Mella and their team's research into ME to be reinstated in the national budget.
Thread with link to letter and google translation here
Canada CBC News "New research into CFS"
Excellent article and video about ME and the new Interdisciplinary Canadian Collaborative ME Research Network, ICanCME. Interviews with patient Marie-Josée Ménard and researchers Alain Moreau and Ron Davis.
Article here Video here (2.38 min) Thread here
Cochrane: Michiel Tack has written a blog post on why the Cochrane review, despite its recent amendment is still flawed and misleading. He argues that treatment effects found in the review are (1) small and lower than some estimates of the minimal clinically important difference (2) no longer statistically significant at follow-up and (3) contradicted by objective measurements. Tack argues that there is currently no plausible mechanism for the effectiveness of exercise therapy in CFS and that the treatment effects found are better explained as bias due to a lack of blinding.
Blog here Thread here
USA: Center for Solutions for MECFS The NIH funded ME/CFS research centers held their second annual ME/CFS Consortium Meeting, with the collaborating research centers presenting new findings in MECFS research.
Thread with twitter link here
UK SEN Magazine Article by Mary-Jane Willows of Action for ME: ''ME and you'' describes some of the effects of ME on children and the need for schools to adapt and support. Discussion on the thread questions the emphasis on getting sick children to attend school even for very short visits, with planned gradual increases, rather than focus on home based education provision.
Article here Thread here
Portugal Mike's EU Marathons
Mike Harley has spoken to three Portuguese ME patients. They describe a bleak situation in Portugal with no exclusive group or association for ME/CFS, little knowledge among doctors and little awareness in general.
Interview here Thread here
Medical Error Interviews ''The banality of medical evil'' (part 1)
Scott Simpson interviews Hillary Johnson, journalist, ME sufferer, and author of Osler's Web.
Duration 1hr 12 min. Interview starts at 05:30 minutes. Contains advertising.
Thread with links to podcast and summary here
.....................................................
Research funding and grants
Australia The Australian government is calling for proposals for its $3m Targeted Call for Research (TCR) into ME/CFS. Applications open from 23 Oct 2019 to 29 January 2020.
Details here Thread here
UK ME Association has announced research grants:
The UK ME/CFS Biobank (£99,766) - to sustain and expand for 2 years.
Dr Karl Morten and the University of Oxford (£69,150) - exploring the plasma factors in ME/CFS and their impact on mitochondrial function, including comparison with other fatiguing illnesses.
Dr Keith Geraghty and the University of Manchester (£25,000) - on diagnosis and appropriate early care, to help inform the NICE guidelines.
Article here Thread here
..............................................
Advocacy
#MEAction petition ''Tell the NIH Institute Director, Dr. Walter Koroshetz, that his “plan” for ME is NOT ENOUGH. This plan is not funded enough, not outcomes-focused enough and not urgent enough...''
Petition here Thread here
..............................................
Fundraising
OMF The Open Medicine Foundation has opened a fundraising campaign with a large offer of matched funds to double and triple donations. The money is used for ME research at Stanford and its collaborators at Harvard and Uppsala. A separate website gives details of the Harvard group's work, including information about a heart preload failure study.
Details here Thread here Harvard website here Thread here
...............................................
Coming events
Solve ME/CFS Initiative Webinars ''Advances in ME/CFS Research and Clinical Care''
October 29: Dr Travis Craddock on a genetic predisposition pilot study.
November 14: Dr Amy Proal on the microbiome and persistent pathogens driving chronic symptoms.
December 12: Charmian Proskauer on prevalence, demographics and costs using data mining on insurance records.
Thread with details here
Norway CFS/ME Research Conference Nov. 25th-26th
The Norwegian ME Association, the Norwegian Institute of Public Health and Oslo University Hospital are organising a research conference with both national and international speakers. The Norwegian ME Association will in addition be organising an open conference on Nov. 26th. with main focus on PEM.
More information here Thread here
UK CMRC Conference The CFS/ME Research Collaborative conference will take place on 10th and 11th March 2020. CMRC members can book now, others after 18th November. Speakers include Chris Ponting, Alain Moreau, Sadie Whittaker, Heidi Nicholl, Neil Harrison and Dan Peterson.
Details here Thread here
.......................................
Continued in the next post.
Part 1. See the next post for the section on research.
News
UK NHS Health Research Authority (HRA)
''Report of a publications review jointly commissioned by the HRA and the University of Bristol''.
David Tuller had reported to the HRA that 11 of Prof. Crawley's research papers had used the same ethics approval reference number.
The panel reported that most of the papers were research, not service evaluation, and agreed that the cited ethics approval did not apply to them, yet they concluded no further ethical approval was required. Inexplicably, they classed the school absence study as service evaluation.
A few minor changes to the publications were required, but no retractions, and, it appears, no disciplinary action.
Announcement here Full report here Thread here
Germany On November 21 to 22 the Charité Fatigue Center Berlin will be organizing its 1st Meeting on Chronic Fatigue in Immune-mediated disorders. The meeting is a non-public event for invited guests. Expected speakers include Carmen Scheibenbogen, Luis Nacul, Bhupesh Prusty, Oystein Fluge, Modra Murovska of the EUROMENE Network and many others.
Flyer here Thread here
Australia The CEO of the Australian Government National Heath and Medical Research Council, Prof Anne Kelso, has written a letter to stakeholders in response to the ME/CFS Advisory Committee's report submitted in April. Kelso says she has ''...decided that NHMRC should develop clinical guidance on ME/CFS.'' She recognises that ''current Australian advice, published by the Royal Australasian College of Physicians in 2002, needs to be updated and replaced.''
Report and letter here Thread here
..................................
Trial by Error by David Tuller
Bristol's Report Due Soon; Slides from My Oxford Talk
In anticipation of the report from Bristol University's investigation regarding concern of prof. Crawley's work, which was due this week (see item above).
The article also includes slides from a talk Tuller just gave in Oxford on Crawley's trial of the "woo-woo Lightning Process".
Article here Thread here and here
....................................
Media, video, blogs, podcast, other news...
UK Sheffield ME and FM group conference was held on 24th October. Speaker Prof. Brian Hughes on 'Controversies and Cock-ups in ME research: The Role of Human Failings'. Topics covered included the replication crisis in research, with human factors such as therapeutic alliegance leading to bias in published research with real world consequences for patients. He discussed the PACE trial, and said the so called biopsychosocial model of ME is actually a psychiatric model.
Talk duration 1hr 4min. Q&A duration 26min.
You tube talk here Q&A here Thread with details here
UK - Open letter to Action for ME. Forum member Trish has written a personal open letter to Sonya Chowdhury, Chief Executive of Action for ME, about their web page about Graded Exercise Therapy which still suggests GET as a treatment approach for patients to consider. Concerns include misuse of evidence on efficacy, misplaced trust in 'experts', and underplaying the seriousness of harm. An alternative version is suggested warning against GET.
Thread with letter here
Broken Battery What is ME?
Forum member Adam pwme has made a 7 minute long video which is a good introduction to ME with useful facts and quotes as well as statements from doctors, patients and advocates.
Thread with video and transcript here
Finland The general broadcast Yle: "Sannin, 15, not the first case: At least three young people with CFS have been assigned to a children's home".
Article about a demonstration held in Tampere, Finland this week protesting against young ME patients being taken from their families. "The situation between families and university hospitals has been controversial for years. An now it's only getting worse".
Article here Thread with google translation of article here
Norway The Norwegian ME Association has written a letter to the editor in a medical newspaper asking for an earmarked allocation for Fluge/Mella and their team's research into ME to be reinstated in the national budget.
Thread with link to letter and google translation here
Canada CBC News "New research into CFS"
Excellent article and video about ME and the new Interdisciplinary Canadian Collaborative ME Research Network, ICanCME. Interviews with patient Marie-Josée Ménard and researchers Alain Moreau and Ron Davis.
Article here Video here (2.38 min) Thread here
Cochrane: Michiel Tack has written a blog post on why the Cochrane review, despite its recent amendment is still flawed and misleading. He argues that treatment effects found in the review are (1) small and lower than some estimates of the minimal clinically important difference (2) no longer statistically significant at follow-up and (3) contradicted by objective measurements. Tack argues that there is currently no plausible mechanism for the effectiveness of exercise therapy in CFS and that the treatment effects found are better explained as bias due to a lack of blinding.
Blog here Thread here
USA: Center for Solutions for MECFS The NIH funded ME/CFS research centers held their second annual ME/CFS Consortium Meeting, with the collaborating research centers presenting new findings in MECFS research.
Thread with twitter link here
UK SEN Magazine Article by Mary-Jane Willows of Action for ME: ''ME and you'' describes some of the effects of ME on children and the need for schools to adapt and support. Discussion on the thread questions the emphasis on getting sick children to attend school even for very short visits, with planned gradual increases, rather than focus on home based education provision.
Article here Thread here
Portugal Mike's EU Marathons
Mike Harley has spoken to three Portuguese ME patients. They describe a bleak situation in Portugal with no exclusive group or association for ME/CFS, little knowledge among doctors and little awareness in general.
Interview here Thread here
Medical Error Interviews ''The banality of medical evil'' (part 1)
Scott Simpson interviews Hillary Johnson, journalist, ME sufferer, and author of Osler's Web.
Duration 1hr 12 min. Interview starts at 05:30 minutes. Contains advertising.
Thread with links to podcast and summary here
.....................................................
Research funding and grants
Australia The Australian government is calling for proposals for its $3m Targeted Call for Research (TCR) into ME/CFS. Applications open from 23 Oct 2019 to 29 January 2020.
Details here Thread here
UK ME Association has announced research grants:
The UK ME/CFS Biobank (£99,766) - to sustain and expand for 2 years.
Dr Karl Morten and the University of Oxford (£69,150) - exploring the plasma factors in ME/CFS and their impact on mitochondrial function, including comparison with other fatiguing illnesses.
Dr Keith Geraghty and the University of Manchester (£25,000) - on diagnosis and appropriate early care, to help inform the NICE guidelines.
Article here Thread here
..............................................
Advocacy
#MEAction petition ''Tell the NIH Institute Director, Dr. Walter Koroshetz, that his “plan” for ME is NOT ENOUGH. This plan is not funded enough, not outcomes-focused enough and not urgent enough...''
Petition here Thread here
..............................................
Fundraising
OMF The Open Medicine Foundation has opened a fundraising campaign with a large offer of matched funds to double and triple donations. The money is used for ME research at Stanford and its collaborators at Harvard and Uppsala. A separate website gives details of the Harvard group's work, including information about a heart preload failure study.
Details here Thread here Harvard website here Thread here
...............................................
Coming events
Solve ME/CFS Initiative Webinars ''Advances in ME/CFS Research and Clinical Care''
October 29: Dr Travis Craddock on a genetic predisposition pilot study.
November 14: Dr Amy Proal on the microbiome and persistent pathogens driving chronic symptoms.
December 12: Charmian Proskauer on prevalence, demographics and costs using data mining on insurance records.
Thread with details here
Norway CFS/ME Research Conference Nov. 25th-26th
The Norwegian ME Association, the Norwegian Institute of Public Health and Oslo University Hospital are organising a research conference with both national and international speakers. The Norwegian ME Association will in addition be organising an open conference on Nov. 26th. with main focus on PEM.
More information here Thread here
UK CMRC Conference The CFS/ME Research Collaborative conference will take place on 10th and 11th March 2020. CMRC members can book now, others after 18th November. Speakers include Chris Ponting, Alain Moreau, Sadie Whittaker, Heidi Nicholl, Neil Harrison and Dan Peterson.
Details here Thread here
.......................................
Continued in the next post.
Week beginning 21st October 2019
Part 2 - Research
Biomedical research
NeuroImage Clinical
''Intra brainstem connectivity is impaired in CFS'' by Barnden et al.
Analysed fMRI correlations to directly test connectivity within and from the brainstem in 45 patients with ME (Fukuda) and 27 healthy controls. Found, during a task, reduced connectivity in ME patients between some specific parts of the brainstem that correlated with symptom severity. The authors say this could explain many ME symptoms.
Paper here Thread here
Medical Xpress
''Brain studies show CFS and Gulf War illness are distinct conditions'' by Georgetown University Medical Center.
Prof James Baraniuk's team presented findings from 2 related studies a the Society for Neuroscience AGM. Brain activation during a working memory task was compared between pre- and post-exercise fMRI studies, and between CFS and GWI groups. Both groups showed similar midbrain and brain stem activation before exercise, but different afterwards, with more activation in CFS and less in GWI, showing they are 'related but distinctly different disorders'.
Article here Thread here
Medicine
''Evidence of altered cardiac autonomic regulation in ME/CFS - A systematic review and meta-analysis'' by Nelson et al.
64 studies included that measured heart rate or heart rate variability in a range of situations including physical and mental activity and tilt table testing.
Authors conclude differences in HR parameters indicate that ME/CFS patients have altered autonomic cardiac regulation.
Article here Thread here
University College London - PhD thesis
''Investigations of B cell phenotype and metabolic function in patients with ME/CFS'' by Fane Mensah.
From the impact statement: 'This thesis describes the finding of a significant phenotypic marker, CD24, on B cells of ME/CFS patients in comparison to HC.'
Thesis here Thread here
..............................................
Other research
Community Psychology in Global Perspective
"How psychiatric referrals influence stigmatization in patients with ME and CFS: An examination of American and British models" by Terman et al.
The research team from the University of Chicago has developed a new ME and CFS Stigma Scale. In the present study, this scale was just to measure perceived stigma and estrangement in a sample of British and American patients with a self-reported diagnoses of ME or CFS. The results showed little difference between both groups but there was an association between psychiatric referrals and greater levels of perceived stigma and estrangement.
Article here Thread here
Journal of General Internal Medicine
"Rethinking the Standard of Care for ME/CFS" by Friedberg et al.
In this publication Fred Friedberg, Madison Sunnquist, and Luis Nacul point out problems with research into cognitive behavior therapy (CBT) and graded exercise therapy (GET) in ME/CFS. According to the authors, this research has used a flawed disease model, overly broad illness criteria and controversial claims of recovery and clinical improvement. As an alternative to CBT and GET, Friedberg et al. suggest using the energy envelope theory to minimize post-exertional malaise and appropriate pharmacological treatments to help manage individual symptoms of ME/CFS.
Article here Thread here
Annals of Medicine
“The Effect of Comorbid Medical and Psychiatric Diagnoses on CFS” by Natelson et al.
Natelson et al. report that comorbid psychiatric diagnoses in CFS patients are associated with psychological symptoms such as depression and mental fatigue but do not act as a symptom multiplier. According to the authors, the data “suggest that depression and/or anxiety are independent disease processes from CFS.” In contrast, the presence of other medically unexplained syndromes such as irritable bowel syndrome and fibromyalgia did impact the illness “such that the more of these that co-exist the more health-related burdens the patient has.”
Article here Thread here
...........................................
S4ME social media: Facebook, Twitter and You Tube
Part 2 - Research
Biomedical research
NeuroImage Clinical
''Intra brainstem connectivity is impaired in CFS'' by Barnden et al.
Analysed fMRI correlations to directly test connectivity within and from the brainstem in 45 patients with ME (Fukuda) and 27 healthy controls. Found, during a task, reduced connectivity in ME patients between some specific parts of the brainstem that correlated with symptom severity. The authors say this could explain many ME symptoms.
Paper here Thread here
Medical Xpress
''Brain studies show CFS and Gulf War illness are distinct conditions'' by Georgetown University Medical Center.
Prof James Baraniuk's team presented findings from 2 related studies a the Society for Neuroscience AGM. Brain activation during a working memory task was compared between pre- and post-exercise fMRI studies, and between CFS and GWI groups. Both groups showed similar midbrain and brain stem activation before exercise, but different afterwards, with more activation in CFS and less in GWI, showing they are 'related but distinctly different disorders'.
Article here Thread here
Medicine
''Evidence of altered cardiac autonomic regulation in ME/CFS - A systematic review and meta-analysis'' by Nelson et al.
64 studies included that measured heart rate or heart rate variability in a range of situations including physical and mental activity and tilt table testing.
Authors conclude differences in HR parameters indicate that ME/CFS patients have altered autonomic cardiac regulation.
Article here Thread here
University College London - PhD thesis
''Investigations of B cell phenotype and metabolic function in patients with ME/CFS'' by Fane Mensah.
From the impact statement: 'This thesis describes the finding of a significant phenotypic marker, CD24, on B cells of ME/CFS patients in comparison to HC.'
Thesis here Thread here
..............................................
Other research
Community Psychology in Global Perspective
"How psychiatric referrals influence stigmatization in patients with ME and CFS: An examination of American and British models" by Terman et al.
The research team from the University of Chicago has developed a new ME and CFS Stigma Scale. In the present study, this scale was just to measure perceived stigma and estrangement in a sample of British and American patients with a self-reported diagnoses of ME or CFS. The results showed little difference between both groups but there was an association between psychiatric referrals and greater levels of perceived stigma and estrangement.
Article here Thread here
Journal of General Internal Medicine
"Rethinking the Standard of Care for ME/CFS" by Friedberg et al.
In this publication Fred Friedberg, Madison Sunnquist, and Luis Nacul point out problems with research into cognitive behavior therapy (CBT) and graded exercise therapy (GET) in ME/CFS. According to the authors, this research has used a flawed disease model, overly broad illness criteria and controversial claims of recovery and clinical improvement. As an alternative to CBT and GET, Friedberg et al. suggest using the energy envelope theory to minimize post-exertional malaise and appropriate pharmacological treatments to help manage individual symptoms of ME/CFS.
Article here Thread here
Annals of Medicine
“The Effect of Comorbid Medical and Psychiatric Diagnoses on CFS” by Natelson et al.
Natelson et al. report that comorbid psychiatric diagnoses in CFS patients are associated with psychological symptoms such as depression and mental fatigue but do not act as a symptom multiplier. According to the authors, the data “suggest that depression and/or anxiety are independent disease processes from CFS.” In contrast, the presence of other medically unexplained syndromes such as irritable bowel syndrome and fibromyalgia did impact the illness “such that the more of these that co-exist the more health-related burdens the patient has.”
Article here Thread here
...........................................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 28th October 2019
Trial by Error by David Tuller
The HRA's Letter about the Investigation of Bristol Research
David Tuller posts a letter he received from the Health Research Authority together with their report on their investigation of 11 studies from Prof. Crawley and Bristol University. The investigation was done by an anonymous panel of three people, confirming Tuller's reports of misuse of the wrong ethics approval for the studies, but suggesting only minor adjustments as correction.
Article with letter here Thread here
Bristol, It Is Time to Withdraw Your Complaints to Berkeley
A letter from David Tuller to Bristol University asking for a withdrawal of their complaints to Berkeley University for Tuller's "actions and behaviour", because as Tuller says: "My critiques of Professor Crawley's work have been substantive and well-founded".
Letter here Thread here
How Bristol Investigators Avoided Ethical Review (Reprise)
A repost of a previous blog post describing in depth how eleven studies with lead investigator prof. Crawley got qualified as "research" instead of as "service evaluation".
Article here Thread here
The HRA's Letter to Berkeley's Chancellor
Chief executive Teresa Allen from Health Research Authority has sent a letter to Tuller's university Berkeley saying HRA has "identified and implemented a number of improvements as a direct consequence of David's concerns ..."
Letter here Thread here
.............................
Media, video, blogs, other news
A Life Hidden Beneath the Surface, Part 3
Naomi Whittingham's third and final article analysing the British Association of CFS/ME (BACME) guidelines on severe ME. The articles provide thorough information on why and how their BPS model is wrong and offers helpful advice for better approaches.
Article here Thread here
Conference video ''Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue'', by Dr Lucinda Bateman.
A useful talk for doctors. Topics: questionnaires including SF-36 and HUA (hours of upright activity); PEM and the importance of staying in the energy envelope; orthostatic intolerance; and cognitive dysfunction. Duration 56 minutes.
Video here Thread here
UK Invest in ME Research booklet ''WE ME: a community and ME''
Sections describing ME briefly; fictional examples to illustrate poor professional knowledge; experiences of patients and carers; the IiMER led European organisations and the Norwich research centre; and an appeal for funds.
Information and booklet here PDF version here Thread here
Open Medicine Foundation (OMF) Christopher Armstrong, PhD, science Liaison for OMF, is the guest speaker on episode #46 of Uninvisible Podcast, a podcast which focuses on invisible conditions and invisible chronic illness.
Podcast here Thread here
............................
Research funding news
Solve ME/CFS Initiative Ramsay Grant Program 2019. The researchers and projects have been announced. Topics to be studied include T-cells; a possible immune defect (class II MHC deficiency); postural contributors to PEM; blood and CSF microbiome and virome; endothelial function; and brain perfusion before and after exercise. Each project will receive about 30 to 50 thousand dollars for a year.
Details here Thread here
.............................................
Biomedical research
European Heart Journal
''Paradigm shift to disequilibrium in the genesis of orthostatic intolerance in patients with CFS'' by K Miwa.
Patients with CFS were tested for disequilibrium and POTS. Those with disequilibrium were more severely affected and often unable to complete the 10 minute standing test. The author concludes that disequilibrium is an important cause of OI in some CFS patients.
Paper here Thread here
............................
Advocacy
#MEAction has published a letter sent to NIH Institute Director, Dr. Koroshetz, explaining that the current NIH plan for ME research is not enough. The letter lists five actions needed to accelerate ME research. #MEAction has set up a petition so that all who agree can sign on.
Petition here Thread here
USA The Solve ME/CFS group has announced dates for next year's ME/CFS Advocacy Week - April 19 to 26, 2020. The week includes online actions as well as in-person events in Washington, DC.
Announcement here Thread here
............................
Coming Events
Europe Invest in ME Research has announced that they will be hosting overlapping European researcher (EMERG) and clinician (EMECC) workshops over several days in November.
Information here Thread here
USA Dr Ron Davis is scheduled to give a presentation at Princeton University on November 20, 2019. The topic is ''Immune and hematologic characteristics of ME/CFS''. This talk is free and open to the university community and the public.
Details here Thread here
...........................
S4ME social media: Facebook, Twitter and You Tube
Trial by Error by David Tuller
The HRA's Letter about the Investigation of Bristol Research
David Tuller posts a letter he received from the Health Research Authority together with their report on their investigation of 11 studies from Prof. Crawley and Bristol University. The investigation was done by an anonymous panel of three people, confirming Tuller's reports of misuse of the wrong ethics approval for the studies, but suggesting only minor adjustments as correction.
Article with letter here Thread here
Bristol, It Is Time to Withdraw Your Complaints to Berkeley
A letter from David Tuller to Bristol University asking for a withdrawal of their complaints to Berkeley University for Tuller's "actions and behaviour", because as Tuller says: "My critiques of Professor Crawley's work have been substantive and well-founded".
Letter here Thread here
How Bristol Investigators Avoided Ethical Review (Reprise)
A repost of a previous blog post describing in depth how eleven studies with lead investigator prof. Crawley got qualified as "research" instead of as "service evaluation".
Article here Thread here
The HRA's Letter to Berkeley's Chancellor
Chief executive Teresa Allen from Health Research Authority has sent a letter to Tuller's university Berkeley saying HRA has "identified and implemented a number of improvements as a direct consequence of David's concerns ..."
Letter here Thread here
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Media, video, blogs, other news
A Life Hidden Beneath the Surface, Part 3
Naomi Whittingham's third and final article analysing the British Association of CFS/ME (BACME) guidelines on severe ME. The articles provide thorough information on why and how their BPS model is wrong and offers helpful advice for better approaches.
Article here Thread here
Conference video ''Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue'', by Dr Lucinda Bateman.
A useful talk for doctors. Topics: questionnaires including SF-36 and HUA (hours of upright activity); PEM and the importance of staying in the energy envelope; orthostatic intolerance; and cognitive dysfunction. Duration 56 minutes.
Video here Thread here
UK Invest in ME Research booklet ''WE ME: a community and ME''
Sections describing ME briefly; fictional examples to illustrate poor professional knowledge; experiences of patients and carers; the IiMER led European organisations and the Norwich research centre; and an appeal for funds.
Information and booklet here PDF version here Thread here
Open Medicine Foundation (OMF) Christopher Armstrong, PhD, science Liaison for OMF, is the guest speaker on episode #46 of Uninvisible Podcast, a podcast which focuses on invisible conditions and invisible chronic illness.
Podcast here Thread here
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Research funding news
Solve ME/CFS Initiative Ramsay Grant Program 2019. The researchers and projects have been announced. Topics to be studied include T-cells; a possible immune defect (class II MHC deficiency); postural contributors to PEM; blood and CSF microbiome and virome; endothelial function; and brain perfusion before and after exercise. Each project will receive about 30 to 50 thousand dollars for a year.
Details here Thread here
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Biomedical research
European Heart Journal
''Paradigm shift to disequilibrium in the genesis of orthostatic intolerance in patients with CFS'' by K Miwa.
Patients with CFS were tested for disequilibrium and POTS. Those with disequilibrium were more severely affected and often unable to complete the 10 minute standing test. The author concludes that disequilibrium is an important cause of OI in some CFS patients.
Paper here Thread here
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Advocacy
#MEAction has published a letter sent to NIH Institute Director, Dr. Koroshetz, explaining that the current NIH plan for ME research is not enough. The letter lists five actions needed to accelerate ME research. #MEAction has set up a petition so that all who agree can sign on.
Petition here Thread here
USA The Solve ME/CFS group has announced dates for next year's ME/CFS Advocacy Week - April 19 to 26, 2020. The week includes online actions as well as in-person events in Washington, DC.
Announcement here Thread here
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Coming Events
Europe Invest in ME Research has announced that they will be hosting overlapping European researcher (EMERG) and clinician (EMECC) workshops over several days in November.
Information here Thread here
USA Dr Ron Davis is scheduled to give a presentation at Princeton University on November 20, 2019. The topic is ''Immune and hematologic characteristics of ME/CFS''. This talk is free and open to the university community and the public.
Details here Thread here
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S4ME social media: Facebook, Twitter and You Tube
For next months news see this thread:
News in Brief - November 2019
News in Brief - November 2019