Thread by @e_portch

Seeking #pwME (pre-COVID w/ or wo/ viral trigger OR COVID-triggered) for a £ online questionnaire examining medical stigma & social media use. Info below, direct questionnaire link & unroll @ end of 🧵. Please RT unrolled 🧵#MECFS #myalgicE #LongCovid #pwLC #NEISVoid(1/18)

Compensation: £15 Amazon voucher for full completion (emailed to you) with partial compensation available (2/18)

Eligibility criteria: a) 18 years+, b) View &/or engage with social media content posted by &/or about ME/CFS &/or Long-COVID at least weekly, c) Currently reside in/received diagnosis, & most or all care in UK (3/18)

d) Have been diagnosed w/ ME/CFS either (a) before March 2020 & this was not attributable to a COVID-19 infection (viral OR non-viral trigger), or (b) after March 2020 & this was attributable to a COVID-19 infection (4/18)

Justification for inclusion criteria: We recognise that many w/ ME/CFS symptoms are undiagnosed & that obtaining a diagnosis can be labour-intensive & frustrating. We do not wish to minimise or delegitimise anyone’s experience, but reason that those wo/ a diagnosis may: (5/18)

a) still be undergoing tests to rule out other conditions, b) have a separate sub-type of Long-COVID which does not include PEM/PESE/PENE, c) experienced insufficient interactions with medical professionals to enable completion of section 2 of our Q (6/18)

You will be asked to complete an online questionnaire with 3 sections: 1) diagnostic and demographic info, 2) interactions with medical professionals, 3) use of social media to engage/ interact w/ content about ME/CFS & Long-COVID (7/18)

Ways we have tried to accommodate symptom load: 1) Qs can be completed in ~1 hour, 2) Info sheet and instructions are available in audio & downloadable format, 3) You can skip any Q you don’t want to answer & can write as little /much as you want (8/18)

4) you can enlist others to help you read/complete the Qs, 5) you can withdraw from the study at any time, and for any reason, simply by closing your browser window (9/18)

6) We include bail-out points where you can permanently stop completing the study in exchange for partial compensation (Amazon gift voucher, here you can decide whether you would like us to delete or retain your partial data) (10/18)

7) The Q progressively saves your answers so you can complete across multiple, self-paced sittings within a 2-week period, as long as you access the study via the same device & browser (11/18)

Preserving your anonymity:
The only identifiable info you will provide is your email address (in request of full/partial compensation). This will be permanently deleted from our records once compensation is granted & will never be associated with your study data (12/18)

Withdrawal: To help us monitor withdrawal, pls attempt to fully or partially complete (using a bail-out point) the study within 2 weeks. At 2 weeks we will delete your partial response & will be unable to send partial compensation as we will not have your email address (13/18)

We are recruiting in batches. The study link (below) may be disabled for a short time between batches. This will not prevent existing participants from continuing to complete the Q across self-paced sittings. I will RT when the Q is reopened (14/18)

Other disclosures: 1) Our funding has NOT come from a source that could alternatively fund the critical biomedical research that all #pwME and #pwLC desperately need (15/18)

2) Our research team comprises psychologists (academic, not clinical) and #pwME. We ALL ascribe to the evidence-based biomedical model of aetiology and we have NO affiliation with BPS proponents (16/18)

This study has obtained ethical approval from Bournemouth University’s Science, Technology and Health Research Ethics Panel (Approval #: 48319) (17/18)

Finally, here is the direct link to the Q: bournemouthpsych.eu.qualtrics.com/jfe/form/SV_ey… (18/18)

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