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News in Brief - October 2018
- Thread starter Trish
- Start date
Week beginning 1st October 2018
News
UK The October 01 release of the SNOMED CT UK Edition is now available from the NHS Digital public version of the SNOMED CT browser.
This UK release incorporates the addition of the parent "Disorder of nervous system" for CFS and terms under Synonyms, as approved and implemented for the July 2018 release of SNOMED CT International Edition.
Thread here post #162
Norway A petition against the National Competence Service for CFS/ME (BPS approach) has now reached over 4 500 signatures. Initiator Nina E. Steinkopf has written several blogposts explaining problematic aspects with the Competence Service. Last week she wrote about their research efforts.
Blog post here (Google translated) Thread post here.
.............................................................
In the media
CNN ''Indie pop sensation's disease became his muse''.
Ryan Prior has written about Belle & Sebastian musician Stuart Murdoch for CNN Health. Stuart Murdoch has had ME since the late 1980's. He has recently become an ambassador for Open Medicine Foundation and says that to shine a light on a disease that afflicts more than 17 million people worldwide could be the most important thing he ever does.
Article here Thread here
GQ Magazine ''Chronic fatigue syndrome: everything you need to know''. Short reasonably good article explaining CFS - making it clear it's real and quoting Charles Shepherd saying GET can be harmful.
Article here Thread here
.................................................................
Articles, blogs, talks, videos
Australia #MEAction ''National Committee will Issue Report on ME and CFS'' by Sasha Nimmo.
Raises concerns about the approach taken to ME by the National Health and Medical Research Council, and the lack of transparency in the process of producing the report.
Article here Thread here post #10
Trial by Error by David Tuller
''The CFS/ME Research Collaborative Conference''.
David Tuller attended the conference which had a biomedical focus. He reflects on the change since Esther Crawley left the CMRC, and shares some of his conversations and impressions.
Article here Thread here
Northern Ireland Talks by David Tuller and Brian Hughes on 2nd October at Newry: ''The PACE Trial: 'One Of The Greatest Scandals'.''
A brilliant double act! Brian Hughes placed PACE in the context of the wider crisis in psychology research, emphasising the unacceptability of using subjective outcome measures in unblinded trials, and outcome switching. David Tuller described his work challenging PACE, explored its flaws further, and asked if it is a case of research misconduct. The video has already been viewed over 8 000 times.
Video here Thread here
UK CMRC Conference some of the lecture videos are now available.
Videos here Thread here post #273
................................................................
Biomedical Research
Journal of Translational Medicine Review article ''Chronic viral infections in ME/CFS'' by Scheibenbogen et al (EUROMENE)
Concludes that more research is needed including longitudinal studies and biomarkers for diagnosis and subgrouping.
Paper here Thread here
Frontiers in Immunology ''CD24 expression and B cell maturation shows a novel link with energy metabolism: potential implications for patients with ME/CFS'' by Mensah et al
Paper here Thread here
................................................................
Current research news
Australia ''Epidemiology of Multiple Somatic Symptoms in the community, and its association with illness related cognitions'', Jones et al
Large longitudinal study which includes CFS as a somatization disorder.
Article by Sasha Nimmo of ME Australia expressing serious concern about the study: ''Macquarie University studies hypochondria in chronic fatigue syndrome, MCS and fibromyalgia''.
Trial information here ... ME Australia article here ... Thread here
USA CDC Awards NASN $ 1,2 Million Contract to develop school nurse led system to conduct active national surveillance for students who are chronically absent. This specifically includes ME/CFS.
Article here Thread here
UK Brighton and Sussex University Hospital and Medical School - Chronic Pain and Fatigue study with Fibromyalgia and ME/CFS patients. Tests include MRI and tilt table.
Thread here
UK ME/CFS Biobank samples will be used for a twelve-month study entitled “Role of Sirt1/NOS axis in vascular and immune homeostasis: A missing piece in the ME/CFS puzzle?” by Dr Francisco Westermeier a biochemist in Austria.
Thread here post #52
.............................................................
Petition
#MEAction ''Per Fink should not spread lies about ME at Columbia University''
The Danish physician Per Fink uses the diagnosis of Bodily Distress Syndrome (BDS) as a unified umbrella for a number of diseases, including ME. #MEAction demands Per Fink to be uninvited as a speaker at the 4th Columbia University Psychosomatic Conference in New York, Oct. 20th.
Petition here Thread here
..........................................................
Coming events
UK Sheffield ME and Fibromyalgia Group conferences.
18 October Charles Shepherd, 23/24 October David Tuller ''Scientific Integrity and Clinical Trials''. See the thread for booking details.
Thread here
............................................................
News
UK The October 01 release of the SNOMED CT UK Edition is now available from the NHS Digital public version of the SNOMED CT browser.
This UK release incorporates the addition of the parent "Disorder of nervous system" for CFS and terms under Synonyms, as approved and implemented for the July 2018 release of SNOMED CT International Edition.
Thread here post #162
Norway A petition against the National Competence Service for CFS/ME (BPS approach) has now reached over 4 500 signatures. Initiator Nina E. Steinkopf has written several blogposts explaining problematic aspects with the Competence Service. Last week she wrote about their research efforts.
Blog post here (Google translated) Thread post here.
.............................................................
In the media
CNN ''Indie pop sensation's disease became his muse''.
Ryan Prior has written about Belle & Sebastian musician Stuart Murdoch for CNN Health. Stuart Murdoch has had ME since the late 1980's. He has recently become an ambassador for Open Medicine Foundation and says that to shine a light on a disease that afflicts more than 17 million people worldwide could be the most important thing he ever does.
Article here Thread here
GQ Magazine ''Chronic fatigue syndrome: everything you need to know''. Short reasonably good article explaining CFS - making it clear it's real and quoting Charles Shepherd saying GET can be harmful.
Article here Thread here
.................................................................
Articles, blogs, talks, videos
Australia #MEAction ''National Committee will Issue Report on ME and CFS'' by Sasha Nimmo.
Raises concerns about the approach taken to ME by the National Health and Medical Research Council, and the lack of transparency in the process of producing the report.
Article here Thread here post #10
Trial by Error by David Tuller
''The CFS/ME Research Collaborative Conference''.
David Tuller attended the conference which had a biomedical focus. He reflects on the change since Esther Crawley left the CMRC, and shares some of his conversations and impressions.
Article here Thread here
Northern Ireland Talks by David Tuller and Brian Hughes on 2nd October at Newry: ''The PACE Trial: 'One Of The Greatest Scandals'.''
A brilliant double act! Brian Hughes placed PACE in the context of the wider crisis in psychology research, emphasising the unacceptability of using subjective outcome measures in unblinded trials, and outcome switching. David Tuller described his work challenging PACE, explored its flaws further, and asked if it is a case of research misconduct. The video has already been viewed over 8 000 times.
Video here Thread here
UK CMRC Conference some of the lecture videos are now available.
Videos here Thread here post #273
................................................................
Biomedical Research
Journal of Translational Medicine Review article ''Chronic viral infections in ME/CFS'' by Scheibenbogen et al (EUROMENE)
Concludes that more research is needed including longitudinal studies and biomarkers for diagnosis and subgrouping.
Paper here Thread here
Frontiers in Immunology ''CD24 expression and B cell maturation shows a novel link with energy metabolism: potential implications for patients with ME/CFS'' by Mensah et al
Paper here Thread here
................................................................
Current research news
Australia ''Epidemiology of Multiple Somatic Symptoms in the community, and its association with illness related cognitions'', Jones et al
Large longitudinal study which includes CFS as a somatization disorder.
Article by Sasha Nimmo of ME Australia expressing serious concern about the study: ''Macquarie University studies hypochondria in chronic fatigue syndrome, MCS and fibromyalgia''.
Trial information here ... ME Australia article here ... Thread here
USA CDC Awards NASN $ 1,2 Million Contract to develop school nurse led system to conduct active national surveillance for students who are chronically absent. This specifically includes ME/CFS.
Article here Thread here
UK Brighton and Sussex University Hospital and Medical School - Chronic Pain and Fatigue study with Fibromyalgia and ME/CFS patients. Tests include MRI and tilt table.
Thread here
UK ME/CFS Biobank samples will be used for a twelve-month study entitled “Role of Sirt1/NOS axis in vascular and immune homeostasis: A missing piece in the ME/CFS puzzle?” by Dr Francisco Westermeier a biochemist in Austria.
Thread here post #52
.............................................................
Petition
#MEAction ''Per Fink should not spread lies about ME at Columbia University''
The Danish physician Per Fink uses the diagnosis of Bodily Distress Syndrome (BDS) as a unified umbrella for a number of diseases, including ME. #MEAction demands Per Fink to be uninvited as a speaker at the 4th Columbia University Psychosomatic Conference in New York, Oct. 20th.
Petition here Thread here
..........................................................
Coming events
UK Sheffield ME and Fibromyalgia Group conferences.
18 October Charles Shepherd, 23/24 October David Tuller ''Scientific Integrity and Clinical Trials''. See the thread for booking details.
Thread here
............................................................
Week beginning 8th October 2018
News
Holland The Dutch Society of GP's has removed ME/CFS guidelines from its website. CBT and GET are no longer recommended treatments.
Article here Thread here
USA The USA is the only country to deviate from the WHO's ICD-10 placement for the terms ME, PVFS and CFS. The USA currently places CFS, the term typically used by US doctors, separately in the symptom chapter under Chronic Fatigue. This negatively impacts medical perception, clinical care, and insurance reimbursement. A proposal that CFS be moved back to the neurological chapter, that the term "SEID" be added as a new term, and that CFS, ME, PVFS, and SEID all be given separate codes, is under consideration. The deadline for comments on proposals is November 13.
Thread here
UK 250 doctors attended an ME/CFS workshop at Royal College of GP's conference. Speakers at the workshop were Doctors Purdie, Shepherd and Speight. There was also a stand at the conference run by ME charities.
Thread here
...........................................................
Trial By Error by David Tuller.
''My latest letter to Archives of Disease in Childhood''.
David Tuller appeals to Dr. Nick Brown, editor-in-chief of Archives of Disease in Childhood to move his "editor's note" about a clinical trial of Lightning Process so readers of the paper will see it, and to provide a deadline for completion of the process called "editorial consideration". The letter includes additional criticisms of the trial.
Blog post here Thread here
"My First Post on the IAPT Program"
David Tuller is going through some of the IAPT (Improving Access to Psychological Therapies) literature and reports on some "ridiculousness" from a document called National Curriculum for CBT in the Context of Long Term Persistent and Distressing Health Conditions.
Blog post here Thread here
...............................................................
Research
Molecular Neurobiology ''Immunosignature Analysis of ME/CFS'' by David M. Patrick et al (including Fluge & Mella)
Explores if there is an immunosignature specific for ME/CFS. The researchers were able to identify a 256-peptide signature that separates ME/CFS samples from healthy controls, suggesting that the hit-and-run hypothesis of immune dysfunction merits further investigation.
Study here Thread here
European Neurology Research article: ''Chronic Fatigue Syndrome: From Chronic Fatigue to More Specific Syndromes'' by Blitshteyn & Chopra.
Suggests a clinical paradigm shift is needed to separate out and treat appropriately conditions such as POTS and MCAS that have been included under the CFS/FM umbrella terms.
Article here Thread here
Health Psychology Open "Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review'' by Mark Vink and Alexandra Vink-Niese.
Excellent detailed analysis of the 2017 Cochrane review of GET for ME/CFS. Discusses flaws in the review and the trials on which it was based, the inadequate evidence on harms, and evidence from the the objective measures in the trials demonstrating that the treatments are ineffective.
Paper here Thread here
.....................................................
Conference and meeting reports
CMRC Conference, September 2018 videos now available and the MEA have produced a detailed conference report outlining the content of all the lectures.
On the forum a separate thread with video link has been created for each talk.
MEA report here
Link to all videos
Threads for each talk listed and linked here.
Stanford Symposium September 2018 videos now available. In order to facilitate discussion of each lecture, separate threads have been created.
List of threads and video links here post #84.
UK Forward-ME Group Minutes from 17th July 2018 have just been published. Topics discussed include NICE guidelines, CMRC, IAPT psychological treatment, PIP disability benefit.
Minutes here Thread here
..........................................................
Current research and research news
USA Stanford Neuroinflammation study is currently enrolling patients with severe ME.
#MEAction article here Thread here
SMCI Ramsay Awards for 2018 have been announced.
“Biomarkers of mitochondrial dysfunction and signaling in ME/CFS” Blomberg and Rosen.
Article here Thread here
“Characterization of Janus kinase (JAK) activation profiles in ME/CFS subgroups”, Lombardi.
Article here Thread here
“Extracellular vesicles fom ME/CFS Patients and their effect on human mast cells and microglia mediators secretion”, Theoharides
Article here Thread here
“Whole genome sequencing and analysis of ME/CFS”, Worthey.
Article here Thread here
OMF Meet the team at the ME/CFS Collaborative Research Center at Harvard, funded by OMF.
Article here Thread here
..........................................................
Useful Resources
MEA The ME Association recently made their publication the “ME/CFS/PVFS Clinical and Research Guide” available for kindle and other Amazon e-book readers.
Available here Thread here
....................................................................
Coming events
Australia An episode of the SBS current affairs TV program “Insight” on ME/CFS will be broadcast on 16th October. It is a panel discussion program and lasts 1 hour.
Details here Thread here
Sweden 2 conferences about ME on 17th and 18th Oct from the Swedish patient organisation RME. Title of the conferences are: Step by step - Topical research and possible treatments. Some lectures will be in English, others in Swedish. Both events will be streamed and familiar names are among the lecturers.
Livestream here and here Thread here
USA NIH: ME/CFS Telebriefing- October 23, 2018
Thread here
UK Action for M.E. AGM and Conference 28th November 2018. It will be live streamed.
Agenda and booking form here Thread here
............................................................
Action
UK Applications are invited for the CMRC Patient Advisory Group. Closing date 7th November.
Details here Thread here
UK #MEAction ''Meet with your MP about ME – Our Toolkit shows you how!''
Information here Thread here
USA #MEAction New York is organising a protest on 20th October against Per Fink speaking at a Psychosomatic conference. There is also a petition.
Occupy ME blog article here Thread here post #60
............................................................
News
Holland The Dutch Society of GP's has removed ME/CFS guidelines from its website. CBT and GET are no longer recommended treatments.
Article here Thread here
USA The USA is the only country to deviate from the WHO's ICD-10 placement for the terms ME, PVFS and CFS. The USA currently places CFS, the term typically used by US doctors, separately in the symptom chapter under Chronic Fatigue. This negatively impacts medical perception, clinical care, and insurance reimbursement. A proposal that CFS be moved back to the neurological chapter, that the term "SEID" be added as a new term, and that CFS, ME, PVFS, and SEID all be given separate codes, is under consideration. The deadline for comments on proposals is November 13.
Thread here
UK 250 doctors attended an ME/CFS workshop at Royal College of GP's conference. Speakers at the workshop were Doctors Purdie, Shepherd and Speight. There was also a stand at the conference run by ME charities.
Thread here
...........................................................
Trial By Error by David Tuller.
''My latest letter to Archives of Disease in Childhood''.
David Tuller appeals to Dr. Nick Brown, editor-in-chief of Archives of Disease in Childhood to move his "editor's note" about a clinical trial of Lightning Process so readers of the paper will see it, and to provide a deadline for completion of the process called "editorial consideration". The letter includes additional criticisms of the trial.
Blog post here Thread here
"My First Post on the IAPT Program"
David Tuller is going through some of the IAPT (Improving Access to Psychological Therapies) literature and reports on some "ridiculousness" from a document called National Curriculum for CBT in the Context of Long Term Persistent and Distressing Health Conditions.
Blog post here Thread here
...............................................................
Research
Molecular Neurobiology ''Immunosignature Analysis of ME/CFS'' by David M. Patrick et al (including Fluge & Mella)
Explores if there is an immunosignature specific for ME/CFS. The researchers were able to identify a 256-peptide signature that separates ME/CFS samples from healthy controls, suggesting that the hit-and-run hypothesis of immune dysfunction merits further investigation.
Study here Thread here
European Neurology Research article: ''Chronic Fatigue Syndrome: From Chronic Fatigue to More Specific Syndromes'' by Blitshteyn & Chopra.
Suggests a clinical paradigm shift is needed to separate out and treat appropriately conditions such as POTS and MCAS that have been included under the CFS/FM umbrella terms.
Article here Thread here
Health Psychology Open "Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review'' by Mark Vink and Alexandra Vink-Niese.
Excellent detailed analysis of the 2017 Cochrane review of GET for ME/CFS. Discusses flaws in the review and the trials on which it was based, the inadequate evidence on harms, and evidence from the the objective measures in the trials demonstrating that the treatments are ineffective.
Paper here Thread here
.....................................................
Conference and meeting reports
CMRC Conference, September 2018 videos now available and the MEA have produced a detailed conference report outlining the content of all the lectures.
On the forum a separate thread with video link has been created for each talk.
MEA report here
Link to all videos
Threads for each talk listed and linked here.
Stanford Symposium September 2018 videos now available. In order to facilitate discussion of each lecture, separate threads have been created.
List of threads and video links here post #84.
UK Forward-ME Group Minutes from 17th July 2018 have just been published. Topics discussed include NICE guidelines, CMRC, IAPT psychological treatment, PIP disability benefit.
Minutes here Thread here
..........................................................
Current research and research news
USA Stanford Neuroinflammation study is currently enrolling patients with severe ME.
#MEAction article here Thread here
SMCI Ramsay Awards for 2018 have been announced.
“Biomarkers of mitochondrial dysfunction and signaling in ME/CFS” Blomberg and Rosen.
Article here Thread here
“Characterization of Janus kinase (JAK) activation profiles in ME/CFS subgroups”, Lombardi.
Article here Thread here
“Extracellular vesicles fom ME/CFS Patients and their effect on human mast cells and microglia mediators secretion”, Theoharides
Article here Thread here
“Whole genome sequencing and analysis of ME/CFS”, Worthey.
Article here Thread here
OMF Meet the team at the ME/CFS Collaborative Research Center at Harvard, funded by OMF.
Article here Thread here
..........................................................
Useful Resources
MEA The ME Association recently made their publication the “ME/CFS/PVFS Clinical and Research Guide” available for kindle and other Amazon e-book readers.
Available here Thread here
....................................................................
Coming events
Australia An episode of the SBS current affairs TV program “Insight” on ME/CFS will be broadcast on 16th October. It is a panel discussion program and lasts 1 hour.
Details here Thread here
Sweden 2 conferences about ME on 17th and 18th Oct from the Swedish patient organisation RME. Title of the conferences are: Step by step - Topical research and possible treatments. Some lectures will be in English, others in Swedish. Both events will be streamed and familiar names are among the lecturers.
Livestream here and here Thread here
USA NIH: ME/CFS Telebriefing- October 23, 2018
Thread here
UK Action for M.E. AGM and Conference 28th November 2018. It will be live streamed.
Agenda and booking form here Thread here
............................................................
Action
UK Applications are invited for the CMRC Patient Advisory Group. Closing date 7th November.
Details here Thread here
UK #MEAction ''Meet with your MP about ME – Our Toolkit shows you how!''
Information here Thread here
USA #MEAction New York is organising a protest on 20th October against Per Fink speaking at a Psychosomatic conference. There is also a petition.
Occupy ME blog article here Thread here post #60
............................................................
Last edited:
Week beginning 15th October 2018
Headline news
Cochrane Reviews withdrawn
''Exercise therapy for Chronic Fatigue Syndrome'' by Lillebeth Larun et al. has been temporarily withdrawn according to a Reuters article.
Cochrane Exercise review here
Reuters ''Exclusive: Science journal to withdraw chronic fatigue review amid patient activist complaints'' by Kate Kelland.
This article is heavily biased, quoting Prof Colin Blakemore who gives the impression Cochrane has bowed to pressure from militant patients.
Reuters article here Thread here
Trial by Error by David Tuller ''Cochrane Withdraws Flawed Exercise Review''
Gives a clear explanation of the history of Cochrane CFS reviews for CBT and GET, and the importance of Tom Kindlon's and the late Robert Courtney's critiques of the exercise therapy review. Tuller outlines some of the key flaws in the trials included in the review. There is also a suggestion that Cochrane is considering moving CFS from the Common Mental Disorders group.
Article here Thread here
Chinese herbs for CFS Cochrane has announced it has withdrawn this review.
In a statement Cochrane writes as reason that the Cochrane Common Mental Disorders Group is currently undertaking a strategic portfolio assessment of all existing and planned reviews and protocols, including those relating to Chronic Fatigue Syndrome (CFS).
Link to Cochrane statement here Thread here
...................................................
Clinical guidelines news
UK NICE guidelines NICE have published their final scope for their review of the diagnosis and management guidelines for ME/CFS.
Guideline scope PDF here (9 pages) Thread here
Stakeholder comments and developers responses PDF here (354 pages)
List of members appointed so far to the Guideline Committee here Threadhere
BMJ Best Practice document for CFS/ME was updated by Prof. James Baraniuk in September 2018. Most of it is behind a paywall.
Prof Malcolm Hooper was one of the peer reviewers and has made his review public. He writes that Baraniuk was instructed to include input from other reviewers. Hooper's review describes the best practice document is not fit for purpose, and gives detailed reasons.
BMJ document here Hooper's review here Thread here
UpToDate clinical guidelines used by doctors worldwide has updated its CFS (ME/CFS) information. CBT/GET have not been removed but have been downgraded.
Thread here
...............................................................
Other news
UK ''Dialogues for a neglected illness'', a new ME/CFS project by the makers of the film ''Voices from the Shadows'' and with consultant support from the LSHTM Cure-ME team, has been awarded Wellcome funding.
Article here Thread here
........................................................
In the media
Australia
An episode of the SBS current affairs TV program “Insight” on ME/CFS was broadcast on 16th October. It is a panel discussion program and lasts 1 hour and includes input from patients, doctors and scientists.
Sydney Morning Herald newspaper article - ''I'm 33 and have been living in aged care for eight years'' by Ketra Wooding who has severe ME and chemical sensitivities and whose condition was made worse by GET. She was also featured in the SBS TV program. A very good and moving article.
SBS link here Article here Thread here
Germany Excellent article about Afflicted which, after a short paragraph about how Afflicted failed, concentrates on ME as one of the diseases that was misrepresented. Prof. Montoya, Prof. Davis, Linda Tannenbaum and Jamison Hill are cited. Science for ME is mentioned.
Article in German here Google translation into English here Thread here
...................................................
Trial By Error by David Tuller
''Per Fink in New York''
David explains the objections to the invitation of Per Fink to give 2 talks at a psychosomatic conference at Columbia University.
Article here Thread here
''The Psychosomatic Conference’s Pathetic Response''
Hard hitting reply to a weak response from the conference organiser.
Article here Thread here
''ME/CFS is not a psychosomatic illness''
Ian Lipkin, Director of the Center for Infection and Immunity and the Center for Solutions for ME/CFS at Columbia University, has written an open letter before the Conference where Per Fink is invited as speaker. The letter states that patients with ME have biological abnormalities that cannot be characterised as psychosomatic.
Blog post here Thread here
Virology Blog: ''My letter to organizer of 4th Columbia Psychosomatics Conference'' by Vincent Racaniello.
Racaniello emails Dr Landa, director of the conference, and lends support to the protests surrounding Per Fink's participation at the conference. He also urges her to give a proper response to David Tuller's email.
Article here Thread here
New York #MEAction organised a protest against Per Fink at the University.
Article here Press Release here
...................................................................
Useful resources
Unrest Continuing Education module video ''Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome''.
Excellent 12 minute video presented by Dr David Kaufman.
Part of the Unrest Continuing Education module, made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership with #MEAction.
YouTube video here Thread here
...........................................................
Biomedical Research
Scandinavian Journal of Pain ''Exercise-induce hyperalgesia, complement system and elastase activation in ME/CFS - a secondary analysis'' by Polli et al.
Small study with shows some inconsistent ''evidence for a potential link between immune system alteration and dysfunctional endogenous pain modulation.''
Paper here Thread here
..........................................................
Other Research
Frontiers in Pediatrics ''School Functioning in Adolescents With CFS'' by Knight et al.
Highlights the importance of looking at all aspects of school functioning, not just attendance, in helping children with CFS.
Paper here Thread here
Fatigue: Biomedicine, Health & Behavior ''Evaluation of ME/CFS education materials in local health departments'' by Brimmer et al.
Purpose was to identify methods used by local health departments on information about ME/CFS. Concludes that materials and outreach methods might require tailoring to local health departments as competing health priorities was the most common reason given for not using ME/CFS materials.
Paper here Thread here
Health and Quality of Life Outcomes ''Defining the minimally clinically important difference of the SF-36 physical function subscale for paediatric CFS/ME'' by Bridgen, Crawley et al.
Using questionnaires and interviews with small samples, concludes a change of 10 points in 6 months on the pediatric SF-36 physical functioning scale is clinically significant. No objective measures used.
Paper here Thread here
.............................................................
Current research
USA Stanford - Replication of a 2014 diffusion MRI study showing white matter abnormalities in patients is currently recruiting.
#MEAction article here Thread here
Norway The Comeback study at the University Hospital of North Norway, a research project on faecal transplantation on ME, is still recruiting. Patients can register as interested by private Facebook message to the researchers.
Facebook page here Thread here post #349
.....................................................
Conference video
Conference by Sheffield ME & Fibromyalgia Group with Dr. Charles Shepherd
Dr. Shepherd gave a broad overview of topical issues on ME.
Next week there will be two more talks, this time with David Tuller.
Video of Dr. Shepherd's lecture Thread here
.............................................................
Coming Events
Sheffield, UK, 23/24 October
David Tuller ''Scientific Integrity and Clinical Trials''. See the thread for booking details.
Thread here
Alabama, USA, 24th October
Lecture by Jarred Younger on ME
At Hudson Alpha Institute of Biotechnology, Alabama
Link here Thread here
Newry, Northern Ireland, 30th October
Lecture by Dr John Kerr will include information on his current biomedical research findings on identifiable ME subgroups and specifically targeted treatments.
Details and tickets here Thread here
Canterbury, New Zealand, 31st October
The Canterbury ME/CFS group has arranged a talk with update on research by Ros Vallings.
More info at ANZME's website here Thread here post #33
Oslo, Norway, 27th November
Open seminar about ME with lectures by David Tuller, Prof. Benedicte A. Lie and Prof. Karl Johan Tronstad. This open seminar is part of a 2-day research conference arranged by The Norwegian ME Association, The Norwegian Institute of Public Health and the National Competence Service for CFS/ME.
Tickets here Thread here
.......................................................
Petition
Norway Petition against the Norwegian national Competence Service with a BPS approach to ME is still going and has over 5 000 signatures so far.
Link to petition and how to sign here Thread here
........................................................
Headline news
Cochrane Reviews withdrawn
''Exercise therapy for Chronic Fatigue Syndrome'' by Lillebeth Larun et al. has been temporarily withdrawn according to a Reuters article.
Cochrane Exercise review here
Reuters ''Exclusive: Science journal to withdraw chronic fatigue review amid patient activist complaints'' by Kate Kelland.
This article is heavily biased, quoting Prof Colin Blakemore who gives the impression Cochrane has bowed to pressure from militant patients.
Reuters article here Thread here
Trial by Error by David Tuller ''Cochrane Withdraws Flawed Exercise Review''
Gives a clear explanation of the history of Cochrane CFS reviews for CBT and GET, and the importance of Tom Kindlon's and the late Robert Courtney's critiques of the exercise therapy review. Tuller outlines some of the key flaws in the trials included in the review. There is also a suggestion that Cochrane is considering moving CFS from the Common Mental Disorders group.
Article here Thread here
Chinese herbs for CFS Cochrane has announced it has withdrawn this review.
In a statement Cochrane writes as reason that the Cochrane Common Mental Disorders Group is currently undertaking a strategic portfolio assessment of all existing and planned reviews and protocols, including those relating to Chronic Fatigue Syndrome (CFS).
Link to Cochrane statement here Thread here
...................................................
Clinical guidelines news
UK NICE guidelines NICE have published their final scope for their review of the diagnosis and management guidelines for ME/CFS.
Guideline scope PDF here (9 pages) Thread here
Stakeholder comments and developers responses PDF here (354 pages)
List of members appointed so far to the Guideline Committee here Threadhere
BMJ Best Practice document for CFS/ME was updated by Prof. James Baraniuk in September 2018. Most of it is behind a paywall.
Prof Malcolm Hooper was one of the peer reviewers and has made his review public. He writes that Baraniuk was instructed to include input from other reviewers. Hooper's review describes the best practice document is not fit for purpose, and gives detailed reasons.
BMJ document here Hooper's review here Thread here
UpToDate clinical guidelines used by doctors worldwide has updated its CFS (ME/CFS) information. CBT/GET have not been removed but have been downgraded.
Thread here
...............................................................
Other news
UK ''Dialogues for a neglected illness'', a new ME/CFS project by the makers of the film ''Voices from the Shadows'' and with consultant support from the LSHTM Cure-ME team, has been awarded Wellcome funding.
Article here Thread here
........................................................
In the media
Australia
An episode of the SBS current affairs TV program “Insight” on ME/CFS was broadcast on 16th October. It is a panel discussion program and lasts 1 hour and includes input from patients, doctors and scientists.
Sydney Morning Herald newspaper article - ''I'm 33 and have been living in aged care for eight years'' by Ketra Wooding who has severe ME and chemical sensitivities and whose condition was made worse by GET. She was also featured in the SBS TV program. A very good and moving article.
SBS link here Article here Thread here
Germany Excellent article about Afflicted which, after a short paragraph about how Afflicted failed, concentrates on ME as one of the diseases that was misrepresented. Prof. Montoya, Prof. Davis, Linda Tannenbaum and Jamison Hill are cited. Science for ME is mentioned.
Article in German here Google translation into English here Thread here
...................................................
Trial By Error by David Tuller
''Per Fink in New York''
David explains the objections to the invitation of Per Fink to give 2 talks at a psychosomatic conference at Columbia University.
Article here Thread here
''The Psychosomatic Conference’s Pathetic Response''
Hard hitting reply to a weak response from the conference organiser.
Article here Thread here
''ME/CFS is not a psychosomatic illness''
Ian Lipkin, Director of the Center for Infection and Immunity and the Center for Solutions for ME/CFS at Columbia University, has written an open letter before the Conference where Per Fink is invited as speaker. The letter states that patients with ME have biological abnormalities that cannot be characterised as psychosomatic.
Blog post here Thread here
Virology Blog: ''My letter to organizer of 4th Columbia Psychosomatics Conference'' by Vincent Racaniello.
Racaniello emails Dr Landa, director of the conference, and lends support to the protests surrounding Per Fink's participation at the conference. He also urges her to give a proper response to David Tuller's email.
Article here Thread here
New York #MEAction organised a protest against Per Fink at the University.
Article here Press Release here
...................................................................
Useful resources
Unrest Continuing Education module video ''Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome''.
Excellent 12 minute video presented by Dr David Kaufman.
Part of the Unrest Continuing Education module, made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership with #MEAction.
YouTube video here Thread here
...........................................................
Biomedical Research
Scandinavian Journal of Pain ''Exercise-induce hyperalgesia, complement system and elastase activation in ME/CFS - a secondary analysis'' by Polli et al.
Small study with shows some inconsistent ''evidence for a potential link between immune system alteration and dysfunctional endogenous pain modulation.''
Paper here Thread here
..........................................................
Other Research
Frontiers in Pediatrics ''School Functioning in Adolescents With CFS'' by Knight et al.
Highlights the importance of looking at all aspects of school functioning, not just attendance, in helping children with CFS.
Paper here Thread here
Fatigue: Biomedicine, Health & Behavior ''Evaluation of ME/CFS education materials in local health departments'' by Brimmer et al.
Purpose was to identify methods used by local health departments on information about ME/CFS. Concludes that materials and outreach methods might require tailoring to local health departments as competing health priorities was the most common reason given for not using ME/CFS materials.
Paper here Thread here
Health and Quality of Life Outcomes ''Defining the minimally clinically important difference of the SF-36 physical function subscale for paediatric CFS/ME'' by Bridgen, Crawley et al.
Using questionnaires and interviews with small samples, concludes a change of 10 points in 6 months on the pediatric SF-36 physical functioning scale is clinically significant. No objective measures used.
Paper here Thread here
.............................................................
Current research
USA Stanford - Replication of a 2014 diffusion MRI study showing white matter abnormalities in patients is currently recruiting.
#MEAction article here Thread here
Norway The Comeback study at the University Hospital of North Norway, a research project on faecal transplantation on ME, is still recruiting. Patients can register as interested by private Facebook message to the researchers.
Facebook page here Thread here post #349
.....................................................
Conference video
Conference by Sheffield ME & Fibromyalgia Group with Dr. Charles Shepherd
Dr. Shepherd gave a broad overview of topical issues on ME.
Next week there will be two more talks, this time with David Tuller.
Video of Dr. Shepherd's lecture Thread here
.............................................................
Coming Events
Sheffield, UK, 23/24 October
David Tuller ''Scientific Integrity and Clinical Trials''. See the thread for booking details.
Thread here
Alabama, USA, 24th October
Lecture by Jarred Younger on ME
At Hudson Alpha Institute of Biotechnology, Alabama
Link here Thread here
Newry, Northern Ireland, 30th October
Lecture by Dr John Kerr will include information on his current biomedical research findings on identifiable ME subgroups and specifically targeted treatments.
Details and tickets here Thread here
Canterbury, New Zealand, 31st October
The Canterbury ME/CFS group has arranged a talk with update on research by Ros Vallings.
More info at ANZME's website here Thread here post #33
Oslo, Norway, 27th November
Open seminar about ME with lectures by David Tuller, Prof. Benedicte A. Lie and Prof. Karl Johan Tronstad. This open seminar is part of a 2-day research conference arranged by The Norwegian ME Association, The Norwegian Institute of Public Health and the National Competence Service for CFS/ME.
Tickets here Thread here
.......................................................
Petition
Norway Petition against the Norwegian national Competence Service with a BPS approach to ME is still going and has over 5 000 signatures so far.
Link to petition and how to sign here Thread here
........................................................
Week beginning 22nd October 2018
News
Cochrane Review of Exercise Therapy for CFS update
Following last week's Reuters' report that this review had been temporarily withdrawn, Cochrane have now added this note to the last page of the Review.
UK NICE guidelines committee appointments update
Additional names added to the list of appointments are causing serious concern - see thread discussion.
NICE committee list here Thread here post #106
UK Parliament MP Carol Monaghan met with David Tuller and UK coordinator for #MEAction Espe Moreno. The plan is to secure another ME debate at the UK parliament before the end of the year.
#MEAction article here Thread here
USA NIH telebriefing was held on 23rd October. NIH is looking at how to help increase ME/CFS research. There will be an NIH conference on ME/CFS in April 2019 including a day for young investigators.
Thread here
...................................................................
In the media
UK - BBC Wales Feature on ME and health care services for ME patients in Wales. Includes amongst others Dr. Charles Shepherd.
BBC article here Radio program Eye on Wales here Thread here
.........................................................................
Science for ME news
Annual report published The forum celebrates its first successful year with a report from the Management Committee to members including items on members activity levels and involvement, outreach and looking forward.
Report and thread here (members only)
................................................................
Trial By Error by David Tuller
A Statement in Support of Cochrane
The statement supports Cochrane's decision to temporarily withdraw the review on graded exercise therapy and ME. Goes through the most vital points of the critique against the review.
41 signatures.
Statement here Thread here
Where's My Apology, BMJ Open?
David Tuller has sent an e-mail to Dr. Fiona Godlee at The BMJ seeking an apology for untrue claims made by BMJ Open about his reporting.
Blog post here Thread here
.........................................................
Articles, blogs, videos etc.
Valerie Eliot Smith responds to a statement from Per Fink following the #MEAction demonstration and petition against his recent talk at Columbia University’s annual Psychosomatic Conference. The issue at core is the Karina Hansen case, where Valerie Eliot Smith refutes Per Fink’s claim that this case is not to be debated in public.
Valerie Eliot Smith’s response here Thread here post #8
#MEAction protests Per Fink at Columbia University - Here's what happened
Article from #MEAction about the demonstration against Per Fink's talk in New York and what happened during the 4th Columbia University Psychosomatic Conference.
Article here Thread here post #141
Occupy ME by Jennie Spotila - ''NIH Funding for ME Goes Down in 2018''
Article here Thread here
Sheffield ME and Fibromyalgia Group arranged two talks and Q&A with David Tuller.
Thread which includes recordings of the events here
...............................................................
Biomedical Research
Frontiers in Immunology - B Cell Biology ''CD24 expression and B cell maturation shows a novel link with energy metabolism: potential implications for patients with ME/CFS'' Mensah et al.
Full paper now published.
Paper here Thread here
European Journal of Translational Myology
''Old muscle in young body: an aphorism describing the Chronic Fatigue Syndrome'' by Pietrangelo et al.
Describes the results of in vitro muscle research. Hypothesises that patients with CFS are ''subjected to some of the problems typical for muscle aging, which is probably related to disorders of muscle protein synthesis and biogenesis of mitochondria.''
Article here Thread here
................................................................
Psychosocial Research
Journal of Health Psychology ''The development of an instrument to assess post-exertional malaise in patients with ME and CFS'' by Jason et al.
Describes the development of the new DePaul Post-Exertional Malaise Questionnaire.
Paper here Questionnaire PDF here Thread here
Scandinavian Journal of Pain ''Pain is associated with reduced quality of life and functional status in patients with ME/CFS'', Strand et al
Not a recommendation.
Paper here Thread here
PLOS ONE ''Cost-effectiveness of interventions for medically unexplained symptoms: A systematic review'', Wortman et al
Includes CFS. Vague conclusion that group might be more cost effective that individual interventions. Not a recommendation.
Paper here Thread here
Health Psychology ''Reciprocal associations between daily need-based experiences, energy, and sleep in chronic fatigue syndrome'', Campbell et al
Brief questionnaire based study suggests we are more frustrated and less satisfied when we are sicker and tireder (or something). Not a recommendation.
Paper here Thread here
...........................................................
Research recruitment
ME/CFS study participants needed at NIH
The NIH Intramural Clinical Study is still recruiting ME patients and controls.
Solve ME/CFS Initiative's article with sign up info here Thread here
..........................................................
Coming events
Boston, USA, 3rd November Massachusetts ME/CFS & FM Association invites you to: "How Investigative Journalism Succeeds in a Hostile Medical Environment: A conversation with David Tuller"
Link to event here Thread here
..........................................................
Petition
Finland: ME/CFS is not a functional disorder - we call for appropriate treatment
The petition is addressed to the ministers of the Finnish Ministry of Social Affairs and Health and asks them to initiate planning of treatment for ME/CFS on the basis of up-to-date scientific knowledge. Everyone can sign.
Petition here Thread here
...........................................................
News
Cochrane Review of Exercise Therapy for CFS update
Following last week's Reuters' report that this review had been temporarily withdrawn, Cochrane have now added this note to the last page of the Review.
Review here (Update note page 142) Thread here post #532
UK NICE guidelines committee appointments update
Additional names added to the list of appointments are causing serious concern - see thread discussion.
NICE committee list here Thread here post #106
UK Parliament MP Carol Monaghan met with David Tuller and UK coordinator for #MEAction Espe Moreno. The plan is to secure another ME debate at the UK parliament before the end of the year.
#MEAction article here Thread here
USA NIH telebriefing was held on 23rd October. NIH is looking at how to help increase ME/CFS research. There will be an NIH conference on ME/CFS in April 2019 including a day for young investigators.
Thread here
...................................................................
In the media
UK - BBC Wales Feature on ME and health care services for ME patients in Wales. Includes amongst others Dr. Charles Shepherd.
BBC article here Radio program Eye on Wales here Thread here
.........................................................................
Science for ME news
Annual report published The forum celebrates its first successful year with a report from the Management Committee to members including items on members activity levels and involvement, outreach and looking forward.
Report and thread here (members only)
................................................................
Trial By Error by David Tuller
A Statement in Support of Cochrane
The statement supports Cochrane's decision to temporarily withdraw the review on graded exercise therapy and ME. Goes through the most vital points of the critique against the review.
41 signatures.
Statement here Thread here
Where's My Apology, BMJ Open?
David Tuller has sent an e-mail to Dr. Fiona Godlee at The BMJ seeking an apology for untrue claims made by BMJ Open about his reporting.
Blog post here Thread here
.........................................................
Articles, blogs, videos etc.
Valerie Eliot Smith responds to a statement from Per Fink following the #MEAction demonstration and petition against his recent talk at Columbia University’s annual Psychosomatic Conference. The issue at core is the Karina Hansen case, where Valerie Eliot Smith refutes Per Fink’s claim that this case is not to be debated in public.
Valerie Eliot Smith’s response here Thread here post #8
#MEAction protests Per Fink at Columbia University - Here's what happened
Article from #MEAction about the demonstration against Per Fink's talk in New York and what happened during the 4th Columbia University Psychosomatic Conference.
Article here Thread here post #141
Occupy ME by Jennie Spotila - ''NIH Funding for ME Goes Down in 2018''
Article here Thread here
Sheffield ME and Fibromyalgia Group arranged two talks and Q&A with David Tuller.
Thread which includes recordings of the events here
...............................................................
Biomedical Research
Frontiers in Immunology - B Cell Biology ''CD24 expression and B cell maturation shows a novel link with energy metabolism: potential implications for patients with ME/CFS'' Mensah et al.
Full paper now published.
Paper here Thread here
European Journal of Translational Myology
''Old muscle in young body: an aphorism describing the Chronic Fatigue Syndrome'' by Pietrangelo et al.
Describes the results of in vitro muscle research. Hypothesises that patients with CFS are ''subjected to some of the problems typical for muscle aging, which is probably related to disorders of muscle protein synthesis and biogenesis of mitochondria.''
Article here Thread here
................................................................
Psychosocial Research
Journal of Health Psychology ''The development of an instrument to assess post-exertional malaise in patients with ME and CFS'' by Jason et al.
Describes the development of the new DePaul Post-Exertional Malaise Questionnaire.
Paper here Questionnaire PDF here Thread here
Scandinavian Journal of Pain ''Pain is associated with reduced quality of life and functional status in patients with ME/CFS'', Strand et al
Not a recommendation.
Paper here Thread here
PLOS ONE ''Cost-effectiveness of interventions for medically unexplained symptoms: A systematic review'', Wortman et al
Includes CFS. Vague conclusion that group might be more cost effective that individual interventions. Not a recommendation.
Paper here Thread here
Health Psychology ''Reciprocal associations between daily need-based experiences, energy, and sleep in chronic fatigue syndrome'', Campbell et al
Brief questionnaire based study suggests we are more frustrated and less satisfied when we are sicker and tireder (or something). Not a recommendation.
Paper here Thread here
...........................................................
Research recruitment
ME/CFS study participants needed at NIH
The NIH Intramural Clinical Study is still recruiting ME patients and controls.
Solve ME/CFS Initiative's article with sign up info here Thread here
..........................................................
Coming events
Boston, USA, 3rd November Massachusetts ME/CFS & FM Association invites you to: "How Investigative Journalism Succeeds in a Hostile Medical Environment: A conversation with David Tuller"
Link to event here Thread here
..........................................................
Petition
Finland: ME/CFS is not a functional disorder - we call for appropriate treatment
The petition is addressed to the ministers of the Finnish Ministry of Social Affairs and Health and asks them to initiate planning of treatment for ME/CFS on the basis of up-to-date scientific knowledge. Everyone can sign.
Petition here Thread here
...........................................................
Week beginning 29th October 2018
News
#MEAction Scotland launch their Manifesto.
Describes the current situation in Scotland and focuses lobbying targets on medical education, clinical guidelines, specialist provision and appropriate care including stopping CBT/GET treatments, and research funding.
Article with link to manifesto here Thread here
NICE guideline committee appointments update
All posts have been filled except posts for 2 nurses and a dietitian.
MERUK response here Thread here
IIMER response: ''NICE Guidelines Development - Turning a farce into a shambles'' here
MEA - no formal response yet. Some comments here post #336
AfME response here Thread discussion here post #339
Thread listing and discussing those who applied but were rejected here
UK Parliament A group of MP's led by Carol Monaghan and Nicky Morgan presented a request to the Backbench committee for a parliamentary debate. They highlighted the PACE trial, the imbalance in the newly appointed NICE guideline committee, the harms done by GET and need to remove it, unjustified care orders on children, and the need for proper medical provision.
Video here Thread here
.............................................................
In the media
UK The Guardian podcast ''What role should the public play in science?'' - Science Weekly podcast. 25 minutes.
Ian Sample speaks to Michael Sharpe (Oxford) and Kim Goldsmith (King’s College London) both PACE researchers. They discuss CFS and ME, PACE, and the Reuters' report about the Cochrane CFS Exercise therapy Review being withdrawn. As expected, sadly, the interview gives a complete misrepresentation of the situation.
Article and podcast here Thread here
UK SurreyLive ''Grandma with severe Chronic Fatigue Syndrome misses daughter's wedding and grandchildren's childhoods''.
Interview with severe ME sufferer Nancy Collins and with additional information from Charles Shepherd from the ME Association.
Article here Thread here
....................................................................
Trial by Error by David Tuller
''Trial by Error: Three Years On...''
David Tuller provides a summary of the last three years he has been working on examining the research behind CBT/GET as ME treatments. He also writes about the latest developments surrounding the Cochrane review on GET, and challenges misconceptions of conflict of interest in crowd funding for this work.
Blog post here Thread here
..............................................................
Not the Science Bit by Prof Brian Hughes
''The Triumph of Eminence-Based Medicine''
Prof. Hughes blogs about UK establishment vs research. Headwords are ME, the PACE-trial, the Cochrane review withdrawal and the recent Guardian podcast with PACE researchers about the withdrawal. Excellent article. Favourite quote:
.............................................................
Useful Resources
YouTube videos on PACE
Forum member Graham aka MEAnalysis has put together the last two of a total of four excellent short YouTube videos about the PACE trial. These videos are aimed at anyone who wants a simple summary of the situation.
Videos here Thread here
.............................................................
Reports of talks
New Zealand - Dr Ros Vallings, GP and ME expert, gave a talk about ME in Christchurch.
Thread with summary of key points here
Northern Ireland - Dr. Jonathan Kerr gave a talk ''ME/CFS Subtypes & Targeted Effective Treatments''.
Dr Kerr described his theories about ME/CFS, including EBV reactivation, psychological stress, autoimmunity, subgrouping and gene regulation.
Video here Thread here
............................................................
Biomedical research
Frontiers in Pediatrics ''Blood volume status in CFS/ME correlates with the presence or absence of orthostatic symptoms'' by C Van Campen et al
Small study which concludes: Adults with ME/CFS had a significantly lower blood volume if they had a clinical suspicion of OI compared to those without a clinical suspicion of OI, as well as a significantly lower blood volume compared to the expected value.
Study here thread here
Frontiers in Pediatrics ''Low sensitivity of abbreviated tilt table testing for diagnosing postural tachycardia syndrome in adults with ME/CFS'' by C M. van Campen et al.
Concludes that abbreviated tilt table testing misses a substantial proportion of those ultimately diagnosed with POTS during a 10-minute tilt table test, and should be abandoned for the clinical diagnosis and in epidemiology studies designed to estimate the prevalence of POTS among those with ME/CFS
Paper here Thread here
................................................................
Psychosocial Research
Applied Neuropsychology ''Feedback on underperformance in patients with CFS: The impact on subsequent neuropsychological test performance'' by Roor, Knoop et al
The methodology is so badly flawed that the results are meaningless. Not a recommendation.
Paper here Thread here
.................................................................
Biomedical studies recruiting participants
USA Stanford ME/CFS patients and healthy controls are needed as soon as possible for 5 different studies.
Details including contact information from Solve here Threads here
..............................................................
Upcoming events
Australia 26-27 Nov: CFS/ME International Conference 2018: RID/Research Innovation and Discovery
Organised by National Centre for Neuroimmunology & Emerging diseases. National and international speakers.
Programme here Tickets here thread here
Solve ME/CFS Initiative (SMCI) Webinar Nov. 29th 7-8 PM GMT
''You + M.E.: A community resource, built by the community''
SMCI's Chief Scientific Officer, Sadie Whittaker, invites ME patients to discuss further development of their biobank.
Registration here Thread here
................................................................
Edited to add quote from Brian Hughes article. I forgot quotes don't copy when you copy/paste a post!
News
#MEAction Scotland launch their Manifesto.
Describes the current situation in Scotland and focuses lobbying targets on medical education, clinical guidelines, specialist provision and appropriate care including stopping CBT/GET treatments, and research funding.
Article with link to manifesto here Thread here
NICE guideline committee appointments update
All posts have been filled except posts for 2 nurses and a dietitian.
MERUK response here Thread here
IIMER response: ''NICE Guidelines Development - Turning a farce into a shambles'' here
MEA - no formal response yet. Some comments here post #336
AfME response here Thread discussion here post #339
Thread listing and discussing those who applied but were rejected here
UK Parliament A group of MP's led by Carol Monaghan and Nicky Morgan presented a request to the Backbench committee for a parliamentary debate. They highlighted the PACE trial, the imbalance in the newly appointed NICE guideline committee, the harms done by GET and need to remove it, unjustified care orders on children, and the need for proper medical provision.
Video here Thread here
.............................................................
In the media
UK The Guardian podcast ''What role should the public play in science?'' - Science Weekly podcast. 25 minutes.
Ian Sample speaks to Michael Sharpe (Oxford) and Kim Goldsmith (King’s College London) both PACE researchers. They discuss CFS and ME, PACE, and the Reuters' report about the Cochrane CFS Exercise therapy Review being withdrawn. As expected, sadly, the interview gives a complete misrepresentation of the situation.
Article and podcast here Thread here
UK SurreyLive ''Grandma with severe Chronic Fatigue Syndrome misses daughter's wedding and grandchildren's childhoods''.
Interview with severe ME sufferer Nancy Collins and with additional information from Charles Shepherd from the ME Association.
Article here Thread here
....................................................................
Trial by Error by David Tuller
''Trial by Error: Three Years On...''
David Tuller provides a summary of the last three years he has been working on examining the research behind CBT/GET as ME treatments. He also writes about the latest developments surrounding the Cochrane review on GET, and challenges misconceptions of conflict of interest in crowd funding for this work.
Blog post here Thread here
..............................................................
Not the Science Bit by Prof Brian Hughes
''The Triumph of Eminence-Based Medicine''
Prof. Hughes blogs about UK establishment vs research. Headwords are ME, the PACE-trial, the Cochrane review withdrawal and the recent Guardian podcast with PACE researchers about the withdrawal. Excellent article. Favourite quote:
Article here Thread here
.............................................................
Useful Resources
YouTube videos on PACE
Forum member Graham aka MEAnalysis has put together the last two of a total of four excellent short YouTube videos about the PACE trial. These videos are aimed at anyone who wants a simple summary of the situation.
Videos here Thread here
.............................................................
Reports of talks
New Zealand - Dr Ros Vallings, GP and ME expert, gave a talk about ME in Christchurch.
Thread with summary of key points here
Northern Ireland - Dr. Jonathan Kerr gave a talk ''ME/CFS Subtypes & Targeted Effective Treatments''.
Dr Kerr described his theories about ME/CFS, including EBV reactivation, psychological stress, autoimmunity, subgrouping and gene regulation.
Video here Thread here
............................................................
Biomedical research
Frontiers in Pediatrics ''Blood volume status in CFS/ME correlates with the presence or absence of orthostatic symptoms'' by C Van Campen et al
Small study which concludes: Adults with ME/CFS had a significantly lower blood volume if they had a clinical suspicion of OI compared to those without a clinical suspicion of OI, as well as a significantly lower blood volume compared to the expected value.
Study here thread here
Frontiers in Pediatrics ''Low sensitivity of abbreviated tilt table testing for diagnosing postural tachycardia syndrome in adults with ME/CFS'' by C M. van Campen et al.
Concludes that abbreviated tilt table testing misses a substantial proportion of those ultimately diagnosed with POTS during a 10-minute tilt table test, and should be abandoned for the clinical diagnosis and in epidemiology studies designed to estimate the prevalence of POTS among those with ME/CFS
Paper here Thread here
................................................................
Psychosocial Research
Applied Neuropsychology ''Feedback on underperformance in patients with CFS: The impact on subsequent neuropsychological test performance'' by Roor, Knoop et al
The methodology is so badly flawed that the results are meaningless. Not a recommendation.
Paper here Thread here
.................................................................
Biomedical studies recruiting participants
USA Stanford ME/CFS patients and healthy controls are needed as soon as possible for 5 different studies.
Details including contact information from Solve here Threads here
..............................................................
Upcoming events
Australia 26-27 Nov: CFS/ME International Conference 2018: RID/Research Innovation and Discovery
Organised by National Centre for Neuroimmunology & Emerging diseases. National and international speakers.
Programme here Tickets here thread here
Solve ME/CFS Initiative (SMCI) Webinar Nov. 29th 7-8 PM GMT
''You + M.E.: A community resource, built by the community''
SMCI's Chief Scientific Officer, Sadie Whittaker, invites ME patients to discuss further development of their biobank.
Registration here Thread here
................................................................
Edited to add quote from Brian Hughes article. I forgot quotes don't copy when you copy/paste a post!
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