survey

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...

Hi, This is Lunarainbow’s mum. She is too ill to type now. I came across this survey and told her about it. She wanted me to post this to alert people. It looks like another bps survey to reiterate that ME is psychological illness. This survey has been posted on ME Support Facebook page by a...