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Week beginning 3rd June 2019
Trial by Error by David Tuller
This week Dr Tuller has published six posts on Virology blog relating to the SMILE trial of the Lightning Process (LP) carried out on children at Bristol University. The trial was published in the Archives of Disease in Childhood (ADH), a BMJ journal, in 2017.
Since then Dr Tuller has written numerous letters pointing out the methodological and ethical issues that mean the trial should not have been published, and should be retracted. In June 2018 the journal published an obscurely placed editors' note but has taken no further action.
A recent review paper of CFS in children, lead author Dr Segal, used the SMILE trial as sole evidence to state that LP is an effective treatment. This, and the current NICE review, make it more urgent that the SMILE paper be retracted.
Time to Retract the LP Study; Letter to Archives of Disease in Childhood
Dr Tuller asks Dr Brown, editor-in-chief of ADH, to set a deadline to make a full response in order to protect children and prevent the paper being used to make recommendations.
Article with letter here Thread here
Professor Edwards’ Letter to BMJ’s Dr Godlee About the LP Study
Prof. Jonathan Edwards, an expert adviser to the NICE guideline ME/CFS review, has sent a letter to Dr Godlee, BMJ’s editorial director. He spells out serious ethical and child protection issues and methodological problems with the trial and the need for those with governance responsibilities to act.
Article with letter here Thread here
A Freedom of Information Request to Bristol About LP Study
Dr Tuller has sent FOI requests to Bristol University asking for answers to three questions about the SMILE paper. These include whether and when the trial investigators informed Bristol about the concerns raised by ADC, a copy of the researchers' response to ADC, and whether Bristol did its own investigation of the trial and, if so, a copy of the results.
Article here Thread here
Re-Visiting My Questions for the Science Media Centre about Bristol’s LP Study
Dr Tuller reprints his article from December 2017 about the role of the SMC in publicising the trial, to which the SMC never responded.
Article here Thread here
My Follow-Up Follow-Up with Dr Segal about LP Study Citation
Dr Tuller again asks Dr Segal to correct the statement in her Review article that LP is an effective treatment for children. He explains the urgency and asks her to set herself a deadline to amend or remove this statement.
Article with letters here Thread here
A Second Letter to LP Study’s Senior Author
Professor Alan Montgomery is the senior author of the SMILE paper. Dr Tuller wrote to him in January, without reply and has written to him again urging action to retract the paper.
Article with letter here Thread here
........................................................
In the Media
USA - The Stanford Daily ''Stanford Medicine professor (José Montoya) fired for violating University rules of conduct''.
Article here Occupy ME blog here Thread here
The Mighty ''U.K. TV Reporter Shares 'Bone-Crushing' ME/CFS Diagnosis to Highlight Invisible Disabilities'' by Renee Fabian.
Following last week's ITV item on Gary Burgess, this article describes ME/CFS and Gary's experiences living with it.
Article here Thread here
.............................................................
Articles, videos, blogs, announcements...
UK House of Lords In a written question the Countess of Mar asked about safeguarding of children treated with the Lightning Process and related evidence. The answer listed the different authorities involved in oversight, mentioned results of, and problems with, the SMILE trial and concluded LP ''cannot be suggested as a replacement for current specialised medical care.''
Thread with details here
Dx Revision Watch website has an update following a meeting on May 25th where the 72nd World Health Assembly voted unanimously to approve the draft resolution to adopt the Eleventh revision of the International Classification of Diseases.
Dx Revision Watch website here Thread here
Medium blog 'Meeting Whitney' by Jennifer Brea.
A moving account of a visit to Whitney Dafoe, who has very severe ME, is normally unable to tolerate visitors and is unable to speak so communicates with signs.
Article here Thread here
UK Quadram Institute ''ME/CFS: A coordinated, collaborative approach is vital to understanding the origins of this complex, debilitating condition''. The focus of their ME research is on the interactions between the immune system and the microbiota in the gut, much of it funded by Invest in ME Research.
Article here Thread here
Solve ME/CFS Initiative Carol Head announced earlier this spring that she will step down as President and CEO of the organisation. Maryellen Gleason will become their new Interim CEO.
Thread with more information here
USA Centers for Disease Control CDC ME/CFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call on June 3 included a talk: “Pacing in ME/CFS & Fibromyalgia” by Dr Alison Bested. This was not well received by the patient community who found the simple lifestyle advice and song trivial and patronising. #MEAction has written to Dr Unger of CDC to complain and to urge greater opportunities for patient involvement in these CDC events.
#MEAction article here Thread here
OMF Linda Tannenbaum, OMF Founder & CEO/President reports on her meeting with some of the ME community in Denmark, where she gave a talk about research and heard some patients' stories.
Thread with article here
ME Research UK Breakthrough magazine Spring 2019 is now available to read on line. It includes a report on the Parliamentary debate, a brief note on the CMRC plan to bid for a large project including greatly expanding the UK ME/CFS Biobank, and reports on research projects funded by MERUK.
Magazine PDF version here Thread here
IiMER Invest in ME Research Conference reports
Dr Chris Armstrong reflects on the separate days for young investigators, researchers and the public symposium. He highlights the positive benefits of researcher-patient interactions, and the value such meetings for research.
Dr Ros Vallings reports on the public symposium with summaries of all the talks.
Dr Armstrong's reflections here Dr Vallings report here Thread here
[edited 18th June to correct links]
........................................................
Research
Annals of the Rheumatic Diseases
''Investigating the role of TGF-beta and fatigue in CFS'' by Dibnah et al.
The study compared serum transforming growth factor-beta in a small sample of CFS patients and healthy controls and found no significant differences. There was a slightly significant relationship with fatigue levels in the CFS patients. Larger studies are needed to check this.
Paper here Thread here
Journal of Translational Medicine
''Orthostatic intolerance in CFS'' by Garner and Baraniuk.
Some of the 39 ME patients in the study had OI-like symptoms while recumbent as well as standing, some had POTS, and some had symptoms after exercise. The authors recommend OI be measured as part of clinical evaluation.
Paper here Thread here
Physiological Reports
''Abnormal blood lactate accumulation during repeated exercise testing in ME/CFS'' by Lien et al.
18 women with ME and 15 controls did a 2 day cardiopulmonary exercise test. Results included deterioration in physical performance and increase in Lactic acid accumulation (Laa) during exercise in patients with ME/CFS while it lowered Laa in healthy controls.
Paper here Thread here
Massey University New Zealand
Masters Degree thesis: ''The Timeline of Post Exertional Malaise in ME/CFS'', 2018, Nielsen.
People with ME and control groups did the 2 day Cardiopulmonary Exercise test with a 48 hour or a 72 hour interval between tests. Results included fatigue questionnaires suggesting slower recovery from PEM in the 48 hour than the 72 hour group.
Thread with link to thesis here
.............................................................
Fundraising
Solve ME/CFS Initiative
Special giving opportunity: Honoring the leadership of outgoing Solve M.E. President & CEO Carol Head. Matched funding up to $75,000 until the end of June 2019.
Donate here Thread here
.........................................................
Advocacy
UK - Carol Monaghan MP will be meeting with the Minister for Disabled People, Health and Work where she'll talk about access to benefits for ME patients. She asks for emails from people with experience with this issue by Friday 14th June.
Thread with Facebook announcement and contact details here
Bateman Horne Center Disrupting Disbelief
Good initiative from Bateman Horne Center which has created a website with information resources and advocacy tools for raising funds and awareness about ME.
Website here Thread here
USA - Solve ME/CFS Initiative Urgent action alert: Support a funding increase for ME/CFS!
Solve ME/CFS has provided an online form to contact Senators and urge them to support Senator Markey's requests for increasing funds for research into ME and to add ME to the Peer-Reviewed Medical Research Program.
Online form here Thread here
................................................
S4ME social media: Facebook, Twitter and You Tube.
Trial by Error by David Tuller
This week Dr Tuller has published six posts on Virology blog relating to the SMILE trial of the Lightning Process (LP) carried out on children at Bristol University. The trial was published in the Archives of Disease in Childhood (ADH), a BMJ journal, in 2017.
Since then Dr Tuller has written numerous letters pointing out the methodological and ethical issues that mean the trial should not have been published, and should be retracted. In June 2018 the journal published an obscurely placed editors' note but has taken no further action.
A recent review paper of CFS in children, lead author Dr Segal, used the SMILE trial as sole evidence to state that LP is an effective treatment. This, and the current NICE review, make it more urgent that the SMILE paper be retracted.
Time to Retract the LP Study; Letter to Archives of Disease in Childhood
Dr Tuller asks Dr Brown, editor-in-chief of ADH, to set a deadline to make a full response in order to protect children and prevent the paper being used to make recommendations.
Article with letter here Thread here
Professor Edwards’ Letter to BMJ’s Dr Godlee About the LP Study
Prof. Jonathan Edwards, an expert adviser to the NICE guideline ME/CFS review, has sent a letter to Dr Godlee, BMJ’s editorial director. He spells out serious ethical and child protection issues and methodological problems with the trial and the need for those with governance responsibilities to act.
Article with letter here Thread here
A Freedom of Information Request to Bristol About LP Study
Dr Tuller has sent FOI requests to Bristol University asking for answers to three questions about the SMILE paper. These include whether and when the trial investigators informed Bristol about the concerns raised by ADC, a copy of the researchers' response to ADC, and whether Bristol did its own investigation of the trial and, if so, a copy of the results.
Article here Thread here
Re-Visiting My Questions for the Science Media Centre about Bristol’s LP Study
Dr Tuller reprints his article from December 2017 about the role of the SMC in publicising the trial, to which the SMC never responded.
Article here Thread here
My Follow-Up Follow-Up with Dr Segal about LP Study Citation
Dr Tuller again asks Dr Segal to correct the statement in her Review article that LP is an effective treatment for children. He explains the urgency and asks her to set herself a deadline to amend or remove this statement.
Article with letters here Thread here
A Second Letter to LP Study’s Senior Author
Professor Alan Montgomery is the senior author of the SMILE paper. Dr Tuller wrote to him in January, without reply and has written to him again urging action to retract the paper.
Article with letter here Thread here
........................................................
In the Media
USA - The Stanford Daily ''Stanford Medicine professor (José Montoya) fired for violating University rules of conduct''.
Article here Occupy ME blog here Thread here
The Mighty ''U.K. TV Reporter Shares 'Bone-Crushing' ME/CFS Diagnosis to Highlight Invisible Disabilities'' by Renee Fabian.
Following last week's ITV item on Gary Burgess, this article describes ME/CFS and Gary's experiences living with it.
Article here Thread here
.............................................................
Articles, videos, blogs, announcements...
UK House of Lords In a written question the Countess of Mar asked about safeguarding of children treated with the Lightning Process and related evidence. The answer listed the different authorities involved in oversight, mentioned results of, and problems with, the SMILE trial and concluded LP ''cannot be suggested as a replacement for current specialised medical care.''
Thread with details here
Dx Revision Watch website has an update following a meeting on May 25th where the 72nd World Health Assembly voted unanimously to approve the draft resolution to adopt the Eleventh revision of the International Classification of Diseases.
Dx Revision Watch website here Thread here
Medium blog 'Meeting Whitney' by Jennifer Brea.
A moving account of a visit to Whitney Dafoe, who has very severe ME, is normally unable to tolerate visitors and is unable to speak so communicates with signs.
Article here Thread here
UK Quadram Institute ''ME/CFS: A coordinated, collaborative approach is vital to understanding the origins of this complex, debilitating condition''. The focus of their ME research is on the interactions between the immune system and the microbiota in the gut, much of it funded by Invest in ME Research.
Article here Thread here
Solve ME/CFS Initiative Carol Head announced earlier this spring that she will step down as President and CEO of the organisation. Maryellen Gleason will become their new Interim CEO.
Thread with more information here
USA Centers for Disease Control CDC ME/CFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call on June 3 included a talk: “Pacing in ME/CFS & Fibromyalgia” by Dr Alison Bested. This was not well received by the patient community who found the simple lifestyle advice and song trivial and patronising. #MEAction has written to Dr Unger of CDC to complain and to urge greater opportunities for patient involvement in these CDC events.
#MEAction article here Thread here
OMF Linda Tannenbaum, OMF Founder & CEO/President reports on her meeting with some of the ME community in Denmark, where she gave a talk about research and heard some patients' stories.
Thread with article here
ME Research UK Breakthrough magazine Spring 2019 is now available to read on line. It includes a report on the Parliamentary debate, a brief note on the CMRC plan to bid for a large project including greatly expanding the UK ME/CFS Biobank, and reports on research projects funded by MERUK.
Magazine PDF version here Thread here
IiMER Invest in ME Research Conference reports
Dr Chris Armstrong reflects on the separate days for young investigators, researchers and the public symposium. He highlights the positive benefits of researcher-patient interactions, and the value such meetings for research.
Dr Ros Vallings reports on the public symposium with summaries of all the talks.
Dr Armstrong's reflections here Dr Vallings report here Thread here
[edited 18th June to correct links]
........................................................
Research
Annals of the Rheumatic Diseases
''Investigating the role of TGF-beta and fatigue in CFS'' by Dibnah et al.
The study compared serum transforming growth factor-beta in a small sample of CFS patients and healthy controls and found no significant differences. There was a slightly significant relationship with fatigue levels in the CFS patients. Larger studies are needed to check this.
Paper here Thread here
Journal of Translational Medicine
''Orthostatic intolerance in CFS'' by Garner and Baraniuk.
Some of the 39 ME patients in the study had OI-like symptoms while recumbent as well as standing, some had POTS, and some had symptoms after exercise. The authors recommend OI be measured as part of clinical evaluation.
Paper here Thread here
Physiological Reports
''Abnormal blood lactate accumulation during repeated exercise testing in ME/CFS'' by Lien et al.
18 women with ME and 15 controls did a 2 day cardiopulmonary exercise test. Results included deterioration in physical performance and increase in Lactic acid accumulation (Laa) during exercise in patients with ME/CFS while it lowered Laa in healthy controls.
Paper here Thread here
Massey University New Zealand
Masters Degree thesis: ''The Timeline of Post Exertional Malaise in ME/CFS'', 2018, Nielsen.
People with ME and control groups did the 2 day Cardiopulmonary Exercise test with a 48 hour or a 72 hour interval between tests. Results included fatigue questionnaires suggesting slower recovery from PEM in the 48 hour than the 72 hour group.
Thread with link to thesis here
.............................................................
Fundraising
Solve ME/CFS Initiative
Special giving opportunity: Honoring the leadership of outgoing Solve M.E. President & CEO Carol Head. Matched funding up to $75,000 until the end of June 2019.
Donate here Thread here
.........................................................
Advocacy
UK - Carol Monaghan MP will be meeting with the Minister for Disabled People, Health and Work where she'll talk about access to benefits for ME patients. She asks for emails from people with experience with this issue by Friday 14th June.
Thread with Facebook announcement and contact details here
Bateman Horne Center Disrupting Disbelief
Good initiative from Bateman Horne Center which has created a website with information resources and advocacy tools for raising funds and awareness about ME.
Website here Thread here
USA - Solve ME/CFS Initiative Urgent action alert: Support a funding increase for ME/CFS!
Solve ME/CFS has provided an online form to contact Senators and urge them to support Senator Markey's requests for increasing funds for research into ME and to add ME to the Peer-Reviewed Medical Research Program.
Online form here Thread here
................................................
S4ME social media: Facebook, Twitter and You Tube.
Last edited:
Week beginning 10th June 2019
In the media
Australia - 7 news ''Chronic fatigue syndrome is a very real condition - here's what you need to know'' by Dr Heidi Nicholl, CEO of Emerge Australia.
Good introductory article describes some of the symptoms, biological findings and the importance of pacing. (linked TV interview only available in Australia)
Article here Thread here
Radio Canada ''Unraveling the mystery of ME/CFS'' by Maude Montembeault.
Article about Marie-France Barry who has had severe ME since 1999, and who, along with her healthy twin sister, is being studied by Dr Alain Moreau. Investigations include the effects in the blood of a small energy challenge using a blood pressure cuff, and micro-RNA molecules.
Thread with links to article here (in French with Google translation).
..................................................
Trial by Error by David Tuller
Hey BJGP, Where's That Correction about the Cost of MUS?
Editor of the British Journal of General Practice, Prof. Roger Jones, has in previous correspondence promised Dr Tuller to correct a factual error over-inflating the percentage cost of MUS to the NHS. Dr Tuller has written a new letter asking if the correction has been made.
Letter here Thread here
BJGP Correction Coming, BMJ Still Stonewalls
Dr. Tuller did in the end receive a reply from prof. Jones (see above item) explaining the correction is in the process of being done, and the reason for the delay. Dr. Tuller points out the contrast between BJGP and the BMJ (SMILE trial paper) when it comes to resolving matters.
Article here Thread here
A Letter to Bristol about my Recent FOI Request
Dr Tuller's FOI requests about the SMILE trial (see last week's news) generated an automated response reporting long delays. He has therefore put the questions directly to Sue Paterson, director of legal services at the University of Bristol, explaining the urgency because it involves safeguarding children.
Article with letter here Thread here
..................................................
Articles, blogs, videos etc
Science4ME "Q&A with members of the CureME/ UK ME/CFS Biobank team"
Committee Member Andy has once again done an interview with ME researchers based on questions from forum members. This time with the team at CureME at London School of Hygiene & Tropical Medicine. They talk about recent papers, how they work, the biobank, research, outreach and the importance of focus group. This is part 1 of the interview. Part 2 will be shared next week.
Thread with interview here
Denmark Danish Medical Journal has published a status article on CFS/ME. It mentions some of the progress from biomedical research, but still defines it as a functional disorder and claims there might be a subgroup of patients who'll benefit from GET.
Thread with link to article and google translation here
Awareness video "Children with ME"
Forum member Adam pwme has made an awareness video about children in UK who suffer from ME and the systematic injustice they're met with. Duration: 5 minutes.
Thread with video here
#MEAction ''Jaime Seltzer: Science Makes the Impact''. Article and 3 minute video. Jaime describes her work as #MEAction Science director including updating their Research Review (see below) and collaborating with researchers.
Article with video link here Thread here
#MEAction Research Summary of some of the potentially important biomedical research into ME and ME/CFS of the past 10 years. Compiled by the #MEAction team led by Jaime Seltzer and checked by researchers expert in each area.
Sections: Metabolism, Microbiome, Cardiovascular and Autonomic including post-exercise, and Immunological. Many reported findings are preliminary and need to be tested with larger studies. 6 pages plus 8 pages of references.
Article here Research summary pdf here Thread here
SWLondoner "This is ME"
About a short film by Josh Pickup who suffers from ME. The film presents the spoon theory. “People with chronic illnesses have to think consciously about how to delegate spoons for everything they need to do that day.”
Article here Thread with film here
Book: Artificial Intelligence and Inclusive Education
"Inclusive Education for Students with Chronic Illness - Technological Challenges and Opportunities" by Anna Wood.
Anna Wood draws on her own experience as a student with ME and writes about how artificial intelligence technologies can support students with chronic illness.
Chapter here (Abstract only) Thread here
Psychology of Men & Masculinities
"The real me shining through M.E.": Visualizing Masculinity and Identity Threat in Men with ME/CFS Using Photovoice and IPA - by L. Wilde et al
Explores three themes: Loss of Masculine Identity as Man with ME/CFS, Marginalization attached to ME/CFS and Masculinity and Coping with Dual Indentity by Adjustments, Assmiliation and Acceptance. Ten men with ME/CFS participated through self-authored photographs and interviews.
Abstract here Thread here
................................................
Research funding
Norway The Norwegian ME Association has announced that they are accepting applications for funds for clinical trials into ME and symptom relief. They have 1.3 million NOK for this purpose.
Announcement here Thread here
.................................................
Research
Brain, Behaviour and Immunity
''Patients with fibromyalgia and CFS show increased hsCRP compared to healthy controls'' by Groven et al.
This study found significantly higher levels of the inflammatory marker high-sensitivity C-reactive protein (hsCRP) in CFS and FM patients compared to healthy controls (about 50 people per group), with no significant difference between levels in CFS and FM.
Paper here Thread here
Neuropsychology
''Neuropsychological dysfunction in CFS and the relation between objective and subjective findings'' by Rasouli et al.
From the abstract it seems that the study did not find significant association between self reported and objective tests for cognitive function, but CFS patients showed some problems on objective tests with cognitive speed and attention.
Article here Thread here
International Journal of Therapy and Rehabilitation
''Gravity-induced exercise intervention in an individual with CFS/ME and POTS'' by Ballantine et al.
Case study of a patient with severe ME and POTS using a monthly exercise class over 6 months claims improvement in autonomic symptoms when upright. But some symptoms worsened, and data shown from other patients does not support claims of effectiveness of the treatment. Not a recommendation.
Article here Thread here
Archives of Diseases in Childhood
Letter: ''Illness duration, mood and symptom impact in adolescents with CFS/ME?'' by Neale et al.
Retrospective study of questionnaires completed at initial assessment of 109 patients at specialist clinics showed a longer self reported duration of illness was associated with higher prevalence of self-reported anxiety/depression, worry and symptom impact. More research is needed into reasons for delayed referral and the effect on outcome.
Letter here Thread here
Integrative Medicine Research
"Differential diagnosis between "chronic fatigue" and "chronic fatigue syndrome" by Chang-Gue Son
Gives a short background and information on prevalence of fatigue, idiopathic chronic fatigue and chronic fatigue syndrome. Offers a model to differentiate the diagnoses.
Paper here Thread here
................................................
Advocacy
#MEAction "Congressman Jack Bergman becomes champion for ME!"
After participating in a video conference about ME with advocates, Rep. Bergman decided to partner with ME patients and has already helped raising awareness on several occasions. #MEAction encourages people to send him an email and let him know how much it is appreciated.
Article here Thread here
................................................
S4ME social media: Facebook, Twitter and You Tube.
In the media
Australia - 7 news ''Chronic fatigue syndrome is a very real condition - here's what you need to know'' by Dr Heidi Nicholl, CEO of Emerge Australia.
Good introductory article describes some of the symptoms, biological findings and the importance of pacing. (linked TV interview only available in Australia)
Article here Thread here
Radio Canada ''Unraveling the mystery of ME/CFS'' by Maude Montembeault.
Article about Marie-France Barry who has had severe ME since 1999, and who, along with her healthy twin sister, is being studied by Dr Alain Moreau. Investigations include the effects in the blood of a small energy challenge using a blood pressure cuff, and micro-RNA molecules.
Thread with links to article here (in French with Google translation).
..................................................
Trial by Error by David Tuller
Hey BJGP, Where's That Correction about the Cost of MUS?
Editor of the British Journal of General Practice, Prof. Roger Jones, has in previous correspondence promised Dr Tuller to correct a factual error over-inflating the percentage cost of MUS to the NHS. Dr Tuller has written a new letter asking if the correction has been made.
Letter here Thread here
BJGP Correction Coming, BMJ Still Stonewalls
Dr. Tuller did in the end receive a reply from prof. Jones (see above item) explaining the correction is in the process of being done, and the reason for the delay. Dr. Tuller points out the contrast between BJGP and the BMJ (SMILE trial paper) when it comes to resolving matters.
Article here Thread here
A Letter to Bristol about my Recent FOI Request
Dr Tuller's FOI requests about the SMILE trial (see last week's news) generated an automated response reporting long delays. He has therefore put the questions directly to Sue Paterson, director of legal services at the University of Bristol, explaining the urgency because it involves safeguarding children.
Article with letter here Thread here
..................................................
Articles, blogs, videos etc
Science4ME "Q&A with members of the CureME/ UK ME/CFS Biobank team"
Committee Member Andy has once again done an interview with ME researchers based on questions from forum members. This time with the team at CureME at London School of Hygiene & Tropical Medicine. They talk about recent papers, how they work, the biobank, research, outreach and the importance of focus group. This is part 1 of the interview. Part 2 will be shared next week.
Thread with interview here
Denmark Danish Medical Journal has published a status article on CFS/ME. It mentions some of the progress from biomedical research, but still defines it as a functional disorder and claims there might be a subgroup of patients who'll benefit from GET.
Thread with link to article and google translation here
Awareness video "Children with ME"
Forum member Adam pwme has made an awareness video about children in UK who suffer from ME and the systematic injustice they're met with. Duration: 5 minutes.
Thread with video here
#MEAction ''Jaime Seltzer: Science Makes the Impact''. Article and 3 minute video. Jaime describes her work as #MEAction Science director including updating their Research Review (see below) and collaborating with researchers.
Article with video link here Thread here
#MEAction Research Summary of some of the potentially important biomedical research into ME and ME/CFS of the past 10 years. Compiled by the #MEAction team led by Jaime Seltzer and checked by researchers expert in each area.
Sections: Metabolism, Microbiome, Cardiovascular and Autonomic including post-exercise, and Immunological. Many reported findings are preliminary and need to be tested with larger studies. 6 pages plus 8 pages of references.
Article here Research summary pdf here Thread here
SWLondoner "This is ME"
About a short film by Josh Pickup who suffers from ME. The film presents the spoon theory. “People with chronic illnesses have to think consciously about how to delegate spoons for everything they need to do that day.”
Article here Thread with film here
Book: Artificial Intelligence and Inclusive Education
"Inclusive Education for Students with Chronic Illness - Technological Challenges and Opportunities" by Anna Wood.
Anna Wood draws on her own experience as a student with ME and writes about how artificial intelligence technologies can support students with chronic illness.
Chapter here (Abstract only) Thread here
Psychology of Men & Masculinities
"The real me shining through M.E.": Visualizing Masculinity and Identity Threat in Men with ME/CFS Using Photovoice and IPA - by L. Wilde et al
Explores three themes: Loss of Masculine Identity as Man with ME/CFS, Marginalization attached to ME/CFS and Masculinity and Coping with Dual Indentity by Adjustments, Assmiliation and Acceptance. Ten men with ME/CFS participated through self-authored photographs and interviews.
Abstract here Thread here
................................................
Research funding
Norway The Norwegian ME Association has announced that they are accepting applications for funds for clinical trials into ME and symptom relief. They have 1.3 million NOK for this purpose.
Announcement here Thread here
.................................................
Research
Brain, Behaviour and Immunity
''Patients with fibromyalgia and CFS show increased hsCRP compared to healthy controls'' by Groven et al.
This study found significantly higher levels of the inflammatory marker high-sensitivity C-reactive protein (hsCRP) in CFS and FM patients compared to healthy controls (about 50 people per group), with no significant difference between levels in CFS and FM.
Paper here Thread here
Neuropsychology
''Neuropsychological dysfunction in CFS and the relation between objective and subjective findings'' by Rasouli et al.
From the abstract it seems that the study did not find significant association between self reported and objective tests for cognitive function, but CFS patients showed some problems on objective tests with cognitive speed and attention.
Article here Thread here
International Journal of Therapy and Rehabilitation
''Gravity-induced exercise intervention in an individual with CFS/ME and POTS'' by Ballantine et al.
Case study of a patient with severe ME and POTS using a monthly exercise class over 6 months claims improvement in autonomic symptoms when upright. But some symptoms worsened, and data shown from other patients does not support claims of effectiveness of the treatment. Not a recommendation.
Article here Thread here
Archives of Diseases in Childhood
Letter: ''Illness duration, mood and symptom impact in adolescents with CFS/ME?'' by Neale et al.
Retrospective study of questionnaires completed at initial assessment of 109 patients at specialist clinics showed a longer self reported duration of illness was associated with higher prevalence of self-reported anxiety/depression, worry and symptom impact. More research is needed into reasons for delayed referral and the effect on outcome.
Letter here Thread here
Integrative Medicine Research
"Differential diagnosis between "chronic fatigue" and "chronic fatigue syndrome" by Chang-Gue Son
Gives a short background and information on prevalence of fatigue, idiopathic chronic fatigue and chronic fatigue syndrome. Offers a model to differentiate the diagnoses.
Paper here Thread here
................................................
Advocacy
#MEAction "Congressman Jack Bergman becomes champion for ME!"
After participating in a video conference about ME with advocates, Rep. Bergman decided to partner with ME patients and has already helped raising awareness on several occasions. #MEAction encourages people to send him an email and let him know how much it is appreciated.
Article here Thread here
................................................
S4ME social media: Facebook, Twitter and You Tube.
Week beginning 17th June 2019
News
Cochrane Review
'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al.
17th June 2019: Addition of new published note 'Cochrane’s Editor in Chief has received the revised version of the review from the author team with changes made in response to the complaint by Robert Courtney. The process has taken longer than hoped; the amended review is being finalised and it will be published during the next 2 months.'
Cochrane link here Thread here
USA Veterans Association had planned to change the name of CFS to SEID/CFS and use the Fukuda criteria. After feedback this has been withdrawn. ''VA intends to establish a work group to specifically address this condition''.
Thread with links here
...................................................
In the media
Wales ''S4C Documentary: Are ME patients being wronged by the government and NHS in Wales?''. ME Association article about a TV documentary in Welsh with English subtitles highlighting the experience of Natalie Price who has severe ME, and the lack of treatments and care for people with ME in Wales.
Article here Documentary on You Tube here Thread here
Australia ABC radio The Hookup Podcast with Nat Tencic ''Love and Chronic Fatigue Syndrome''.
Half hour podcast of a radio phone in discussion of the particular challenges of relationships and sex for people with CFS.
Podcast here Thread here
New Zealand - Stuff 'The mystery and life-wrecking result of Chronic Fatigue Syndrome'' by Dr Cathy Stephenson.
Very good clear article describing the symptoms, impact and importance of pacing.
Article here Thread here
...................................................
Articles, videos, blogs...
Science4ME "Q&A with members of the CureME/ UK ME/CFS Biobank team" part 2.
Continuation of @Andy's interview. A fascinating discussion of the work of the biobank team, including home visits to patients to collect data and samples, research projects all over the world using the samples including two projects made possible by crowdfunded donations, and future plans. 40 minute video.
Video here Thread here
EUROMENE European Network on ME/CFS.
New 2 page leaflet summarising what ME is, the lack of effective treatment, and the aims of the organisation to establish a network of researchers and clinicians, and promote research and awareness raising among professionals and the public.
Leaflet pdf here Thread here
proto "Energy Crisis"
Excellent article from Massachusetts General Hospital on some of the ongoing ME research in the USA by researchers including David Systrom, Michael VanElzakker and Jarred Younger.
Article here Thread here
ME Australia "Research update from the National Centre for Neuroimmunology and Emerging Diseases"
Short article reports that the NCNED team has analysed a new cohort of 12 ME patients and once again found faulty cell receptors.
Article here Thread here
Invest in ME Brief from the European Federation of Neurological Associations.
EFNA - an umbrella group representing pan-European neurology patient groups attended the Invest in ME conference last month and has written a short report.
Article here Thread here
Open Medicine Foundation Part of the OMF Conversation series.
Dr. Ron Tompkins, co-leader of the Harvard ME/CFS Collaborative Research Activities, interviews the long-time patient, advocate and doctor Alan Gurwitt. The conversation explores Dr. Gurwitt's experience with ME/CFS, the history of the disease, physician reactions, and recent developments.
Video here (29 minutes) Thread here
#MEAction ''Harvard hosts scientific symposium about ME''.
A report about talks given at the symposium held on June 8th, following the setting up of the OMF funded ME/CFS collaborative at Harvard and associated hospitals last year. Videos will be made available.
Article here Thread here
UK - Dialogues for a Neglected Illness The team who made the film Voices from the Shadows report on progress on their current project.
Thread here
BMJ Journals - Medical Humanities
''Current controversy: Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox'' by Michael Sharpe and Monica Greco.
Long opinion piece, not peer reviewed.
Describes CFS as 'illness-without-disease', meaning symptoms without pathology. Says 'illness focused treatments' (CBT/GET) are not liked by people with CFS because of 'moral connotations'. The writers attempt a philosophical discussion of this and conclude that the biopsychosocial model is a new approach to changing attitudes so patients can access the 'benefits'.
Not a recommendation.
Article here Thread here
Book chapter ''Unhealthy attachments: ME/CFS and the commitment to endure'' by Sally Munt, in the book 'Long term: essays on queer commitment'.
''This peer reviewed book chapter is an autoethnographic testimony to illness and endurance in queer subjects.''
Thread with link here
...................................................
Research
Nature - Scientific Reports
''Mental fatigue is linked with attentional bias for sad stimuli'' by Watanabe et al.
Abstract concludes: 'We demonstrated that acute mental fatigue induced by the long-lasting working memory task led to the alteration of cognitive processing of negative emotional information in the healthy volunteers.' The abstract does not make clear how this relates to the claim that CFS patients with depression or anxiety 'exhibit a vigilant attentional bias toward negative emotional stimuli.'
Article here Thread here
Clinical Child Psychology and Psychiatry
Letter: ''The risk of labelling CFS symptoms as unhelpful cognitive responses'' by Michiel Tack.
Tack responds to a study by Loades et al with adolescents with CFS. He argues that the author's interpretation of questionnaire data is flawed, and the conclusions drawn about catastrophising, illness beliefs and boom-bust activity as perpetuating factors are unjustified.
Letter here (paywalled, see thread for access) Thread here
BMJ Paediatrics Open
''Physical activity patterns among children and adolescents with mild-to-moderate CFS/ME'' by Crawley et al.
Full paper now available. Baseline data used from the MAGENTA trial for those with at least 3 days accelerometer data (138 of the 237 trial participants). Compared activity levels and patterns against questionnaire symptom and physical functioning data. Divided patients into 3 'classes'. Lower activity found in patients with worse symptoms. Suggests treatment plans should take account of initial activity levels.
Article here Thread here
Medical Hypotheses
''Suggested Pathology of Systemic Exertion Intolerance Disease: Impairment of the E3Subunit or Crossover of Swinging Arms of the E2 Subunit of the Pyruvate Dehydrogenase Complex Decreases Regeneration of Cofactor Dihydrolipoic Acid of the E2 Subunit'' by Bohne.
A speculative hypothesis in support of an untested patented treatment (not included).
Article here Thread here
....................................................
Conferences
Germany A ME/CFS conference took place in Hamburg on 22nd June, organized by the German Association for ME/CFS. Topics included diagnosis, therapy, research, circulatory disorders, legal issues, advocacy, and children with ME.
Thread with details here
Psychosomatic Medicine The 7th annual scientific conference of the European Association of Psychosomatic Medicine was held on 19th - 22nd June. Keynote lecture: 'The psychosomatic dream of integrated mental and physical care: only a dream?' by M. Sharpe et al. Sharpe's biography says 'He has published landmark clinical trials showing the benefit of integrated care for patients with cancer and patients with CFS.'
Thread with links to details here
New Zealand Conferences for physicians and GP's included speakers on MUS, the BPS approach and CBT/GET.
Threads here and here
....................................................
Advocacy
ME Research UK "Are you the Trustee with biomedical knowledge that we're looking for?"
ME Research UK is looking for a new member for their Board of Trustees and has prepared a role description and a FAQ for anyone interested in learning more.
Article here Thread here
............................................
Coming Events
Solve ME Webinar: Disability Insurance for ME/CFS, July 25th.
Disability Insurance Attorney Andrew Kantor will talk about navigating employer-sponsored disability process for ME/CFS patients.
Registration here Thread here
...................................................
S4ME social media: Facebook, Twitter and You Tube.
News
Cochrane Review
'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al.
17th June 2019: Addition of new published note 'Cochrane’s Editor in Chief has received the revised version of the review from the author team with changes made in response to the complaint by Robert Courtney. The process has taken longer than hoped; the amended review is being finalised and it will be published during the next 2 months.'
Cochrane link here Thread here
USA Veterans Association had planned to change the name of CFS to SEID/CFS and use the Fukuda criteria. After feedback this has been withdrawn. ''VA intends to establish a work group to specifically address this condition''.
Thread with links here
...................................................
In the media
Wales ''S4C Documentary: Are ME patients being wronged by the government and NHS in Wales?''. ME Association article about a TV documentary in Welsh with English subtitles highlighting the experience of Natalie Price who has severe ME, and the lack of treatments and care for people with ME in Wales.
Article here Documentary on You Tube here Thread here
Australia ABC radio The Hookup Podcast with Nat Tencic ''Love and Chronic Fatigue Syndrome''.
Half hour podcast of a radio phone in discussion of the particular challenges of relationships and sex for people with CFS.
Podcast here Thread here
New Zealand - Stuff 'The mystery and life-wrecking result of Chronic Fatigue Syndrome'' by Dr Cathy Stephenson.
Very good clear article describing the symptoms, impact and importance of pacing.
Article here Thread here
...................................................
Articles, videos, blogs...
Science4ME "Q&A with members of the CureME/ UK ME/CFS Biobank team" part 2.
Continuation of @Andy's interview. A fascinating discussion of the work of the biobank team, including home visits to patients to collect data and samples, research projects all over the world using the samples including two projects made possible by crowdfunded donations, and future plans. 40 minute video.
Video here Thread here
EUROMENE European Network on ME/CFS.
New 2 page leaflet summarising what ME is, the lack of effective treatment, and the aims of the organisation to establish a network of researchers and clinicians, and promote research and awareness raising among professionals and the public.
Leaflet pdf here Thread here
proto "Energy Crisis"
Excellent article from Massachusetts General Hospital on some of the ongoing ME research in the USA by researchers including David Systrom, Michael VanElzakker and Jarred Younger.
Article here Thread here
ME Australia "Research update from the National Centre for Neuroimmunology and Emerging Diseases"
Short article reports that the NCNED team has analysed a new cohort of 12 ME patients and once again found faulty cell receptors.
Article here Thread here
Invest in ME Brief from the European Federation of Neurological Associations.
EFNA - an umbrella group representing pan-European neurology patient groups attended the Invest in ME conference last month and has written a short report.
Article here Thread here
Open Medicine Foundation Part of the OMF Conversation series.
Dr. Ron Tompkins, co-leader of the Harvard ME/CFS Collaborative Research Activities, interviews the long-time patient, advocate and doctor Alan Gurwitt. The conversation explores Dr. Gurwitt's experience with ME/CFS, the history of the disease, physician reactions, and recent developments.
Video here (29 minutes) Thread here
#MEAction ''Harvard hosts scientific symposium about ME''.
A report about talks given at the symposium held on June 8th, following the setting up of the OMF funded ME/CFS collaborative at Harvard and associated hospitals last year. Videos will be made available.
Article here Thread here
UK - Dialogues for a Neglected Illness The team who made the film Voices from the Shadows report on progress on their current project.
Thread here
BMJ Journals - Medical Humanities
''Current controversy: Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox'' by Michael Sharpe and Monica Greco.
Long opinion piece, not peer reviewed.
Describes CFS as 'illness-without-disease', meaning symptoms without pathology. Says 'illness focused treatments' (CBT/GET) are not liked by people with CFS because of 'moral connotations'. The writers attempt a philosophical discussion of this and conclude that the biopsychosocial model is a new approach to changing attitudes so patients can access the 'benefits'.
Not a recommendation.
Article here Thread here
Book chapter ''Unhealthy attachments: ME/CFS and the commitment to endure'' by Sally Munt, in the book 'Long term: essays on queer commitment'.
''This peer reviewed book chapter is an autoethnographic testimony to illness and endurance in queer subjects.''
Thread with link here
...................................................
Research
Nature - Scientific Reports
''Mental fatigue is linked with attentional bias for sad stimuli'' by Watanabe et al.
Abstract concludes: 'We demonstrated that acute mental fatigue induced by the long-lasting working memory task led to the alteration of cognitive processing of negative emotional information in the healthy volunteers.' The abstract does not make clear how this relates to the claim that CFS patients with depression or anxiety 'exhibit a vigilant attentional bias toward negative emotional stimuli.'
Article here Thread here
Clinical Child Psychology and Psychiatry
Letter: ''The risk of labelling CFS symptoms as unhelpful cognitive responses'' by Michiel Tack.
Tack responds to a study by Loades et al with adolescents with CFS. He argues that the author's interpretation of questionnaire data is flawed, and the conclusions drawn about catastrophising, illness beliefs and boom-bust activity as perpetuating factors are unjustified.
Letter here (paywalled, see thread for access) Thread here
BMJ Paediatrics Open
''Physical activity patterns among children and adolescents with mild-to-moderate CFS/ME'' by Crawley et al.
Full paper now available. Baseline data used from the MAGENTA trial for those with at least 3 days accelerometer data (138 of the 237 trial participants). Compared activity levels and patterns against questionnaire symptom and physical functioning data. Divided patients into 3 'classes'. Lower activity found in patients with worse symptoms. Suggests treatment plans should take account of initial activity levels.
Article here Thread here
Medical Hypotheses
''Suggested Pathology of Systemic Exertion Intolerance Disease: Impairment of the E3Subunit or Crossover of Swinging Arms of the E2 Subunit of the Pyruvate Dehydrogenase Complex Decreases Regeneration of Cofactor Dihydrolipoic Acid of the E2 Subunit'' by Bohne.
A speculative hypothesis in support of an untested patented treatment (not included).
Article here Thread here
....................................................
Conferences
Germany A ME/CFS conference took place in Hamburg on 22nd June, organized by the German Association for ME/CFS. Topics included diagnosis, therapy, research, circulatory disorders, legal issues, advocacy, and children with ME.
Thread with details here
Psychosomatic Medicine The 7th annual scientific conference of the European Association of Psychosomatic Medicine was held on 19th - 22nd June. Keynote lecture: 'The psychosomatic dream of integrated mental and physical care: only a dream?' by M. Sharpe et al. Sharpe's biography says 'He has published landmark clinical trials showing the benefit of integrated care for patients with cancer and patients with CFS.'
Thread with links to details here
New Zealand Conferences for physicians and GP's included speakers on MUS, the BPS approach and CBT/GET.
Threads here and here
....................................................
Advocacy
ME Research UK "Are you the Trustee with biomedical knowledge that we're looking for?"
ME Research UK is looking for a new member for their Board of Trustees and has prepared a role description and a FAQ for anyone interested in learning more.
Article here Thread here
............................................
Coming Events
Solve ME Webinar: Disability Insurance for ME/CFS, July 25th.
Disability Insurance Attorney Andrew Kantor will talk about navigating employer-sponsored disability process for ME/CFS patients.
Registration here Thread here
...................................................
S4ME social media: Facebook, Twitter and You Tube.
Week beginning 24th June 2019
News
Norway The Norwegian ME Association has released a report on severe ME based on a survey of 586 ME patients and 198 carers. The report has been presented to the Norwegian Directorate of Health.
This important report is 224 pages long, and includes heart-wrenching comments from patients and carers about the needs of people with severe ME, and lack of appropriate services. The findings will be valuable in other countries too.
Link to report here (in Norwegian) Thread with English summary here
Australia ME Advocacy Network Australia (MEANA), formerly #MEAction Network Australia, was formed in 2016. It has now re-branded and is no longer an #MEAction affiliate. The organisation will continue to advocate for the needs of Australians with ME/CFS and their carers, and to collaborate with Australian and international groups.
Thread with details of Facebook announcement here
UK Parliamentary meeting on disability benefits.
The ME Association reports ''a meeting at the House of Commons on Tuesday 18th June 2019 with Justin Tomlinson MP, Minister of State for Disabled People, Health and Work to discuss problems faced by people with ME/CFS when claiming Employment and Support Allowance (ESA) and Personal Independent Payment (PIP).'' Those present included Dr Charles Shepherd and Carol Monaghan MP who used feedback from over 500 people with ME to make a detailed case for better informed and fairer disability assessments.
MEA report here Thread here
Cochrane Review
'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al.
Some of the correspondence between the review authors and Dr Tovey, the Cochrane Editor in Chief who retired at the end of May, has been made public. This indicates an ongoing disagreement over the revised review, with Dr Tovey suggesting that the review might need to be withdrawn if agreement could not be reached.
Thread with links here
..................................................
Trial by Error by David Tuller
Another Review Mentions LP Study and Prompts More Letters
Dr Tuller has written to Professor Shafran and Dr Bennett, co-authors of a review “A systematic review of randomised controlled trials using psychological interventions for children and adolescents with medically unexplained symptoms: A focus on mental health outcomes”. Dr Tuller explains the methodological and ethical problems with the SMILE LP trial cited by the authors of this review and asks them to act appropriately. Dr Tuller has also written again, with a long cc'd list of recipients, to Dr Fiona Godlee, BMJ editorial director to alert her to this further citation and urge swift action to safeguard children.
Article with letters here Thread here
An Update about the Pediatric MUS Systematic Review
Following up from the above letter, Dr Tuller reports further correspondence with the authors and his hopes that, given their more critical view of studies in the field, they might take appropriate action, as others have failed so far to do.
Article with letters here Thread here
..................................................
In the media
New Zealand Herald Online ''Children with ME/CFS get left behind in New Zealand's education system'' and ''Debate rages on chronic illness ME: Research derailed by idea it is psychological condition''.
Two very good articles by Natalie Akoorie. Paywalled.
Thread with links here
.................................................
Articles, reports, videos, blogs,...
Science for ME Video Q&A with Prof Simon Carding, Quadram Institute.
@Andy, the forum committee outreach coordinator, has interviewed Prof Carding about his work researching possible links between the gut microorganisms, leaky gut, immunology and ME. After an approach from Invest in ME four years ago, three PhD studentships have been jointly funded by the university and IiME. They are collaborating with researchers in other countries, and there are plans for a clinical trial of FMT (faecal microbiota transplantation). Donations to IiME are invited to help fund this.
Video here (45 minutes) Donate to IiME here Thread here
USA ''The Sleepy Girl Guide to Social Security Disability''. This blogger has gathered a long list of helpful advice on all aspects of applying for disability support in the USA.
Blog here Thread here
UK - Forward ME Minutes of meeting held 8th May 2019.
The report includes brief comments on the NICE guideline committee, the call to tender for a NICE project, current research, a stand at the GP conference, and Dr Weir and others briefing DWP benefits assessors about ME.
Minutes here Thread here
Solve M.E. EmPOWER ME Conference 2019 was held in May. They have released the video of a panel discussion ''Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome''. The panel included doctor, scientist/patient and carer/advocate.
Video here (1hr 16min) Thread here
The ME Global Chronicle, June 2019
New edition of 118 pages is out covering science, events, grassroots and international news.
Chronicle here Thread here
.................................................
Research funding applications
USA: OMF article ''Stanford Genome Technology Center Applies to NIH''
Dr Ron Davis and his team at Stanford have made grant applications to develop the technology for the nanoneedle and the red blood cell deformability devices for faster throughput, and to use them to expand the sample sizes tested. Other grant applications include technology for assay of mitochondrial function.
Dr Davis has talked about his research recently at the IiMER conference and in a Radio New Zealand interview.
OMF article here Thread here Thread with updates on talks here
UK: ME/CFS Research Review by Simon McGrath
''Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS''.
Researchers including Professor Chris Ponting, an expert in biomedical genomics, are asking the main UK research funders to finance a large Genome Wide Association Study for ME/CFS. Simon McGrath's blog explains clearly what a GWAS is, and what the method has already achieved in other diseases, and why it has potential to help unlock the causes of ME/CFS.
Article here Thread here
.................................................
Research
Journal of Health Psychology
''Monitoring treatment harm in ME/CFS: A freedom-of-information study of National Health Service specialist centres in England'' by McPhee, Baldwin, Kindlon and Hughes.
Responses from 38 clinics showed that they gave patients little or no warning of potential harms of GET, CBT and activity management. There was no adequate process for monitoring or recording harms and none were recorded, despite many patients dropping out. ''In light of these findings, we recommend that clinics develop standardised protocols for anticipating, recording, and remedying harms, and that these protocols allow for therapies to be discontinued immediately whenever harm is identified.''
Article here Thread here
BMC Public Health
''Unemployment and work disability in individuals with CFS/ME: a community-based cross-sectional study from Spain'' by Castro-Marrero et al.
1086 people with CFS/ME attending a specialist clinic completed questionnaires that showed that those unemployed or on extended sick leave had more and worse symptoms and lower function than those in work. The authors suggest these results may be useful in planning personalized work place adjustments and rehabilitation.
Article here Thread here
Societies
''Innovation in Assistive Technology: Voice of the User'' by Buchanan and Layton.
A very helpful open letter to assistive technology stakeholders from a user perspective. One author, who has been mostly bedbound for many years, writes: “As a disabled person and as a long-time expert assistive technology user, this is everything that I wish you knew and everything I wish you would do.”
Letter here Thread here
...............................................
S4ME social media: Facebook, Twitter and You Tube
News
Norway The Norwegian ME Association has released a report on severe ME based on a survey of 586 ME patients and 198 carers. The report has been presented to the Norwegian Directorate of Health.
This important report is 224 pages long, and includes heart-wrenching comments from patients and carers about the needs of people with severe ME, and lack of appropriate services. The findings will be valuable in other countries too.
Link to report here (in Norwegian) Thread with English summary here
Australia ME Advocacy Network Australia (MEANA), formerly #MEAction Network Australia, was formed in 2016. It has now re-branded and is no longer an #MEAction affiliate. The organisation will continue to advocate for the needs of Australians with ME/CFS and their carers, and to collaborate with Australian and international groups.
Thread with details of Facebook announcement here
UK Parliamentary meeting on disability benefits.
The ME Association reports ''a meeting at the House of Commons on Tuesday 18th June 2019 with Justin Tomlinson MP, Minister of State for Disabled People, Health and Work to discuss problems faced by people with ME/CFS when claiming Employment and Support Allowance (ESA) and Personal Independent Payment (PIP).'' Those present included Dr Charles Shepherd and Carol Monaghan MP who used feedback from over 500 people with ME to make a detailed case for better informed and fairer disability assessments.
MEA report here Thread here
Cochrane Review
'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al.
Some of the correspondence between the review authors and Dr Tovey, the Cochrane Editor in Chief who retired at the end of May, has been made public. This indicates an ongoing disagreement over the revised review, with Dr Tovey suggesting that the review might need to be withdrawn if agreement could not be reached.
Thread with links here
..................................................
Trial by Error by David Tuller
Another Review Mentions LP Study and Prompts More Letters
Dr Tuller has written to Professor Shafran and Dr Bennett, co-authors of a review “A systematic review of randomised controlled trials using psychological interventions for children and adolescents with medically unexplained symptoms: A focus on mental health outcomes”. Dr Tuller explains the methodological and ethical problems with the SMILE LP trial cited by the authors of this review and asks them to act appropriately. Dr Tuller has also written again, with a long cc'd list of recipients, to Dr Fiona Godlee, BMJ editorial director to alert her to this further citation and urge swift action to safeguard children.
Article with letters here Thread here
An Update about the Pediatric MUS Systematic Review
Following up from the above letter, Dr Tuller reports further correspondence with the authors and his hopes that, given their more critical view of studies in the field, they might take appropriate action, as others have failed so far to do.
Article with letters here Thread here
..................................................
In the media
New Zealand Herald Online ''Children with ME/CFS get left behind in New Zealand's education system'' and ''Debate rages on chronic illness ME: Research derailed by idea it is psychological condition''.
Two very good articles by Natalie Akoorie. Paywalled.
Thread with links here
.................................................
Articles, reports, videos, blogs,...
Science for ME Video Q&A with Prof Simon Carding, Quadram Institute.
@Andy, the forum committee outreach coordinator, has interviewed Prof Carding about his work researching possible links between the gut microorganisms, leaky gut, immunology and ME. After an approach from Invest in ME four years ago, three PhD studentships have been jointly funded by the university and IiME. They are collaborating with researchers in other countries, and there are plans for a clinical trial of FMT (faecal microbiota transplantation). Donations to IiME are invited to help fund this.
Video here (45 minutes) Donate to IiME here Thread here
USA ''The Sleepy Girl Guide to Social Security Disability''. This blogger has gathered a long list of helpful advice on all aspects of applying for disability support in the USA.
Blog here Thread here
UK - Forward ME Minutes of meeting held 8th May 2019.
The report includes brief comments on the NICE guideline committee, the call to tender for a NICE project, current research, a stand at the GP conference, and Dr Weir and others briefing DWP benefits assessors about ME.
Minutes here Thread here
Solve M.E. EmPOWER ME Conference 2019 was held in May. They have released the video of a panel discussion ''Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome''. The panel included doctor, scientist/patient and carer/advocate.
Video here (1hr 16min) Thread here
The ME Global Chronicle, June 2019
New edition of 118 pages is out covering science, events, grassroots and international news.
Chronicle here Thread here
.................................................
Research funding applications
USA: OMF article ''Stanford Genome Technology Center Applies to NIH''
Dr Ron Davis and his team at Stanford have made grant applications to develop the technology for the nanoneedle and the red blood cell deformability devices for faster throughput, and to use them to expand the sample sizes tested. Other grant applications include technology for assay of mitochondrial function.
Dr Davis has talked about his research recently at the IiMER conference and in a Radio New Zealand interview.
OMF article here Thread here Thread with updates on talks here
UK: ME/CFS Research Review by Simon McGrath
''Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS''.
Researchers including Professor Chris Ponting, an expert in biomedical genomics, are asking the main UK research funders to finance a large Genome Wide Association Study for ME/CFS. Simon McGrath's blog explains clearly what a GWAS is, and what the method has already achieved in other diseases, and why it has potential to help unlock the causes of ME/CFS.
Article here Thread here
.................................................
Research
Journal of Health Psychology
''Monitoring treatment harm in ME/CFS: A freedom-of-information study of National Health Service specialist centres in England'' by McPhee, Baldwin, Kindlon and Hughes.
Responses from 38 clinics showed that they gave patients little or no warning of potential harms of GET, CBT and activity management. There was no adequate process for monitoring or recording harms and none were recorded, despite many patients dropping out. ''In light of these findings, we recommend that clinics develop standardised protocols for anticipating, recording, and remedying harms, and that these protocols allow for therapies to be discontinued immediately whenever harm is identified.''
Article here Thread here
BMC Public Health
''Unemployment and work disability in individuals with CFS/ME: a community-based cross-sectional study from Spain'' by Castro-Marrero et al.
1086 people with CFS/ME attending a specialist clinic completed questionnaires that showed that those unemployed or on extended sick leave had more and worse symptoms and lower function than those in work. The authors suggest these results may be useful in planning personalized work place adjustments and rehabilitation.
Article here Thread here
Societies
''Innovation in Assistive Technology: Voice of the User'' by Buchanan and Layton.
A very helpful open letter to assistive technology stakeholders from a user perspective. One author, who has been mostly bedbound for many years, writes: “As a disabled person and as a long-time expert assistive technology user, this is everything that I wish you knew and everything I wish you would do.”
Letter here Thread here
...............................................
S4ME social media: Facebook, Twitter and You Tube