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LETTER OF COMPLAINT Today the Science for ME team sent the following letter to the Cochrane Complaint email address: ______________________ To Cochrane Complaints team, Dear Madam or Sir, We are writing to make a complaint about the handling post publication of the 2019 review "Exercise...

PETITION UPDATE 22 Oct: The office of the Editor-in-Chief replies OCT 21, 2023 — In our letter of 8th October addressed to the Chief Executive of Cochrane, we asked for "clear answers to the following questions: 1. Will the 2019 Larun review that Dr Soares-Weiser acknowledged was flawed four...

And the petition update posted on 18 October: PETITION UPDATE 18 October 2023: Cochrane's quality control processes are broken OCT 18, 2023 — On the 8th October, we sent a letter to Catherine Spencer, Chief Executive of Cochrane. You can find a copy of the letter here. In the letter, we...

For completeness, the petition update that was posted on 8 October: PETITION UPDATE 8 October - Global solidarity OCT 8, 2023 — Last week we passed the 4th anniversary of the publication of the flawed 2019 version of the Cochrane review 'Exercise Therapy for CFS' by Larun, Brurberg...

We have today received the following email from the Office of the Cochrane Editor in Chief: Thank you for your email. The 2019 version of the review has undergone thorough editorial scrutiny and the matter is closed. For any new concerns about this topic, the process is to pass them to the...

We have today sent the following email: cspencer@cochrane.org cc editorinchief@cochrane.org cochrane.iag@gmail.com gcleng@doctors.org.uk ___________________ To Catherine Spencer, Chief Executive, Cochrane cc Karla Soares-Weiser, Editor-in-Chief Hilda Bastian, Independent Advisory Group...

As of today (18 September 2023), Science for ME has still not received any response from Cochrane other than acknowledgement of receipt. On the 17 September, the forum committee sent the following followup email to a substantial number of Cochrane officers and Hilda Bastian. It notes the...

Thanks The forum committee acknowledges the considerable effort made by @Trish in drafting the letter and by forum staff in general in facilitating this advocacy effort. We would also like to thank the many members who have added their support to the letter and who have encouraged others to also...

Organisations supporting the letter and campaign International Science for ME ME Global Chronicle World ME Alliance Physios for ME European ME Coalition (EMEC) Austria WE&ME Foundation Australia Emerge Australia Belgium 12ME (Belgium) Millions Missing Belgique Canada Millions Missing Canada...

Attachment to the letter ___________________________________ Part 1: The old Cochrane Exercise Review First published 10 February 2015, revised 5 times. Exercise therapy for chronic fatigue syndrome Information gives the history of all reviews on this topic including the following: October...

Following member discussions, a forum poll and discussions by forum staff and the committee, the following letter has now been sent by email to the Editor-in-chief, Karla Soares-Weiser, and copies to the Governing board, Cochrane Council, Consumer Engagement and Hilda Bastian, head of the IAG...

No decision about a Science for ME submission to the consultation has been made yet. We have created some threads for members to discuss each section of the consultation and, if they wish, post copies of their submissions. These threads have links to the interim plan and to the consultation...

2.30 pm - 3.30 pm COVID-19 2 Covid-19 infection in patients with ME/CFS– an update John Chia, EV Med Research, USA A classification system for post-acute sequelae of SARS CoV-2 infection Leonard Jason, DePaul University, USA Prevalence, clinical correlations and predictors of fatigue and...

1.30 pm - 2.30 pm PUBLIC HEALTH 2 Engaging patients and caregivers in teaching health professional students about ME/CFS: A workshop model Cathy Kline, Gloria Gray, University of British Columbia, Canada Chronic Absenteeism and ME/CFS: A Nurse-Led Approach to Establish the School-Based Active...

11.00 - 12.15 am TREATMENT An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with ME/CFS Nicola Clague-Baker, University of Liverpool, England Stellate ganglion block (SGB) improves symptoms of ME/CFS: a case series Luke Liu...

We have four threads, one for each day of the conference. Please add the following to these threads: * reports from forum members attending the conference * tweets and reports from other social media * your thoughts about the information presented. * any questions you would like asked of...

4.00 - 4.40 pm PROVOCATION STUDIES Plasma proteomics reveals a distinct response to maximal exercise and recovery pattern between females and males ME/CFS subjects Arnaud Germain, Cornell University, USA Comprehensive gene expression profiling of the immune system in ME/CFS Andrew Grimson...

3.00 pm - 4.00 p, PUBLIC HEALTH 1 How to ensure the voice of the severely affected ME/CFS patient is heard in research Helen Baxter, 25% ME Group, United Kingdom Identifying healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis Rosie Twomey, University of...

12.40 - 1.40 pm KEYNOTE ADDRESS Immunology of long COVID Akiko Iwasaki,Yale University, USA 1.40 pm -2.40 pm COVID-19 1 Identifying prevalence of a ME/CFS diagnosis post-COVID and pre-existing conditions that may increase the likelihood of a positive ME/CFS Ali Boolani, Clarkson University...

11 am - 11.40 Provocation Studies 1 Recovery from 2-day cardiopulmonary exercise testing in persons with ME/CFS Geoffrey E. Moore, Ithaca College/ Cornell University, USA Physical activity levels in ME/CFS before and after a 2-Day Cardiopulmonary Exercise Test Protocol Candace N. Receno...