survey

http://whri.org/calling-all-physicians-specialists-allied-health-clinical-operations-leads-and-other-clinicians/ eta: also here https://www.bcmj.org/blog/seeking-physicians-input-what-your-experience-myalgic-encephalomyelitis

details here http://sacfs.asn.au/news/2020/07/07_02_survey_making_the_invisible_visible.htm @Penelope McMillan

From an email from The Neurological Alliance. Please tell us about your experiences during COVID-19 We want to know how you have been impacted by COVID-19, and how your treatment, care and support may have changed. We are emailing you because you previously completed the Neurological Alliance...

A project from what seems to be the Stanford Division of Pain Medicine surveying the patient community over the notion of pain catastrophising and how to better define and label it. I did not manage to offer an alternative name. I am not fond of the proffered alternatives either. It's pretty...

Originally intended to be published in a journal, Dr Hng has decided instead to release this into the public domain. https://drive.google.com/file/d/1R6MgsNuEjdj1fsfJds5bJ2MAACSogOXn/view Post on her Facebook page https://www.facebook.com/DrHng/posts/922049561548938

https://www.surveymonkey.co.uk/r/3MZWGQV From the email I received highlighting the survey

Note from Moderators: IiME created the EMEA, and also the EMECC (Clinicians Council) and the EMERG (Research Group). The EMEA is a member of EFNA (the European Federation of Neurological Associations). A number of threads have been merged to create this thread. ******************** Invest...

Stanford have a study to look at the effect of care giving during COVID-19 pandemic. It doesn't have to be of someone with COVID-19. This is a great opportunity to have input from ME caregivers. https://redcap.stanford.edu/surveys/index.php?s=RFL8CHMT3H DESCRIPTION: You are invited to...

http://covid19-survey.org/

TIME FOR A PROFESSIONAL RETHINK ON ME : Your heart is as important as your head - blog by Jane Colby https://uttingwolffspouts.com/2018/05/12/when-children-dont-get-well/

I just came across this survey but I can't see when it's from or how it came about. see tweet in Andys post below https://www.smartsurvey.co.uk/s/myalgicencephalomyelitissurvey anyone know anything about it? @chicaguapa eta: who's the rep for #MEaction Scotland here?

Cayla M Fappiano, USAF, James N Baraniuk, MD https://academic.oup.com/milmed/advance-article/doi/10.1093/milmed/usz471/5721123?searchresult=1

Hi all, Please consider completing this research survey from Marta Encefalomielitis Miálgica on Facebook's son : Hello! I am a fourth-year student at the University of Aberdeen studying a joint honours degree in International Relations-Sociology. I am currently doing my Bachelor's...

MEAction performed a survey earlier this year, gathering data to submit to NICE for their review of the ME guideline. I think there’s already a link to the full report on the forum but just in case, it can be found here...

This was highlighted in the December Invest in ME newsletter. https://www.surveymonkey.com/r/87GSGGY

Survey, https://apps.mhs.manchester.ac.uk/surveys/TakeSurvey.aspx?PageNumber=1&SurveyID=m4KKln9MH&Preview=true Participant Information Sheet, https://www.research.manchester.ac.uk/portal/files/145778415/Our_PIS_GDPR_UoM_oct_1_verion.pdf

I wrote this personal open letter as a response to taking a survey detailed on this thread. University of Liverpool survey: 'Emotional Distress in Chronic Fatigue Syndrome', 2019 I will post any reply I receive here too.

I've written a blog post about the recent amendment to the Cochrane review and how it doesn't address the major flaws. I will post the full text below as this makes it easier to quote and discuss...

Your experience of ME services - Survey report by #MEAction UK Article: https://www.meaction.net/2019/10/17/me-services-in-the-uk-not-fit-for-purpose/ Full report: https://www.meaction.net/wp-content/uploads/2019/10/Your-experience-of-ME-services-Survey-report-by-MEAction-UK.pdf Results...

Corsius et al. (2019). Zorg voor betere behandeling bij ME. Enquête onder ME-patiënten naar hun ervaringen met behandelingen bij ME. A new patient survey was published two days ago by the Dutch ME/CFS Association (ME/CVS Vereniging). It was conducted online in 2017 and had valid results for...