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Admin Open-OH: Early Adopters Facebook - 14/08/2025 "Feedback requested on our resources! Hi @everyone, Over the past few months, we have been discussing our various resources with members of this group and our user co-design board to consider which resources are most appropriate for...

Elaros (company) https://www.elaros.com/ has lots of different apps. Two of them are for Long Term Conditions: 1. C19-YRS https://c19-yrs.com/ 2. Open-OH https://open-oh.com/

https://open-oh.com/blog/2024/09/09/how-we-are-able-to-support-the-development-of-open-oh/

This thread to discuss the coroner's report relating to the death of a person with ME/CFS, Sarah-Jayne Lewis. We have an In Memory thread for Sarah-Jayne, to remember her. Please note that this thread discusses difficult issues - consider if now is a good time for you to be reading this...

Call for oversight and scrutiny re Open-OH 08-06-25

Small update: I managed to get XaPoo added to my medical record! I now need to get it added to my 'Summary Care Record'. For some reason, despite my ME being my only long term debilitating condition it is not on my Summary Care record. It is frustrating that CFS is the only term referenced in...

Hi Maat, Let me know if this helps ME Association: https://meassociation.org.uk/medical-matters/items/pvfs-mecfs-long-covid/ "The World Health Organisation’s authoritative International Classification of Diseases (ICD-11 2022) recognises Post-Viral Fatigue Syndrome as the parent term in...

Thank you for the update. I will try the same I think. Did you meet any resistance in getting this change? Do you have any advice?

Hi there, I've been looking into this because of the recent government rhetoric on mental health claimants, campaign to end 'sick note culture' and intention to cut PIP payments. I've been wondering if ME was incorrectly classified as a mental health illness. My diagnosis is currently "Chronic...