survey

English overview, http://www.steungroep.nl/images/her_keuring_WIA_of_WAO/Her_keuringen_algemeen/Summary Ervaringen met UWV150dpi.pdf Dutch full report...

https://www.actionforme.org.uk/news/%E2%80%8Bwe-need-your-help-connect-me-survey/

Full question: Do you have a healthcare plan that is consulted, adhered to and kept up to date every time you see a healthcare professional? Available answer options: Yes - fully in place from a GP Yes - partly in place from a GP Yes - fully in place from hospital ME/CFS service Yes - partly...

I wasn't sure where to post this but social and professional stigma around this disease seems kind of relevant to what psychosocial medicine claims to be about. It's a quick survey for a university project. So unlikely to be published research but it's quick to do.

Emerge Australia conducted a health and welfare survey of 600 Australians with ME/CFS, and has released a 77 page report of the findings. The survey covers a range of topics, including time to diagnosis, key symptoms experienced, treatments which were useful. Link to report...

" What should be considered in the design of a clinic to treat complex health conditions? By Cathie Powell Copyright © 2018 Bridges & Pathways. We have an urgent request for you to respond to this State Health Survey about ‘the need for a one-stop clinic for people with chronic and complex...

The report has an English summary from pages 9 - 12. ME-pasienters erfaring med rehabiliteringsopphold (ME patients' experiences with rehabilitation stays) Some of the main findings: Slightly more than half were satisfied with the rehabilitation stay About three out of four disagree or...

My good friend Catherine Hale who is lead researcher with Chronic Illness Inclusion Project has alerted me to this survey if anyone wishes to take part: https://mailchi.mp/c4d5906abe71/take-our-survey-on-chronic-illness-and-disability Ps. I have not yet taken the survey myself so can’t...

I was surprised that there doesn't seem to be a thread on this paper given it discusses a few times the survey that was run here. In this case, I found it difficult to know whether to put this in the biomedical or psychosocial research section. I didn't think it was a good fit for either...

The European ME Alliance has been a member organisation of the European Federation of Neurological Associations since 2015 (https://www.efna.net/emea/) This survey by EFNA includes M.E. https://www.surveymonkey.com/r/EFNA-YS It's open until 21st May and findings will be published on World...

Click http://www.meassociation.org.uk/ to take part, survey is in the centre panel of their homepage, scroll towards the bottom of the page to find it.

For those interested in participating in ME/CFS research. https://redcap.is.depaul.edu/surveys/?s=YJNCDPHXTH

" Mason Foundation ME CFS Biobank Survey The Mason Foundation is a charitable trust that supports medical and scientific research on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The Mason Foundation has engaged the Nous Group (Nous) to investigate the viability of establishing...

Organised by Our Voice, The Alliance Neurological Programme and Neurological Alliance of Scotland https://link.webropolsurveys.com/Participation/Public/0367b98c-80ed-4b95-afa7-9986c78bbf1d?displayId=Uni1393759

Thought this was an interesting survey; would be even more interesting to have a similar study from the last 5 years or so to compare with. https://academic.oup.com/fampra/article/22/4/389/662664 some statements to score on: I am irritated by these patients, I am filled with despair by such...

To go straight to the survey, it's on the MEA home page, http://www.meassociation.org.uk/, towards the bottom of the page, middle column. Options are: UK M.E. Biobank Role of infection Immune system dysfunction Mitochondrial function Neurological involvement e.g. inflammation, PoTS, and...

Severely affected ME (Myalgic Encephalomyelitis) analysis report on questionnaire 25% ME Group (UK) 2004 Link to survey ME 2008: What progress Action for ME and Association of Young People with ME (UK) 2008 Link to survey Ervaringen van de achterban van patiëntenorganisaties met de...

This was pointed out in a post on another thread but I thought it'd be interesting to have it in it's own thread. To what extent has the very positive publicity surrounding 'Unrest' changed public recognition and understanding of ME/CFS in the UK? Major improvement Partial improvement Slight...

From: National ME/FM Action Network http://mefmaction.com/images/stories/quest_newsletters/Quest112.pdf A supplement to this edition contains tables with statistics on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), Multiple Chemical Sensitivities (MCS) as well...