top of page

Community Code of Conduct

To help us ensure that NURA Community is as safe, inclusive and supportive to members as possible, please adhere to the rules below: 

  1. No abuse, unkindness or harassment. This is self-explanatory. Treat fellow members with consideration and respect.

  2. Please avoid assuming the role of a medical professional. We encourage all members to share their knowledge and personal experiences and, based on these, offer support and advice to other members. However, please bear in mind that each person's situation is unique and what works for one person may not work for another. Let's foster a supportive environment where members can exchange ideas and support each other without assuming the role of medical professionals.

  3. No gatekeeping or dismissing other members' experiences. Everyone’s experience of their illness is unique, and what some find helpful, others won’t. Being respectful of people’s experiences, even when they may not align with your own, is key to maintaining a harmonious community. People from all points of the spectrum of illness severity are welcome here, including those without a formal diagnosis.

  4. No selling or promoting personal services or harmful treatments or ideas. We want NURA to be a trustworthy source of information and education for patients and their loved ones. Please refrain from promoting discredited treatment approaches like Graded Exercise Therapy (GET), as well as any suggestion of psychosomatic origins of illness. We generally discourage the promotion of "brain retraining" programmes as a treatment for Long COVID or ME/CFS due to their pseudo-scientific elements and potential for harm. However, we welcome critical discussion. Whilst we ask that you refrain from recommending brain retraining programmes to other NURA Community members, you may of course describe specific strategies that helped you (i.e. relaxation techniques, breathing exercises) without making unsubstantiated claims (“doing this will cure you”). Please don’t provide any links to websites selling brain retraining programmes. 

  5. Privacy. Protect your own - and others' - privacy. Please don't share any personal details, such as phone numbers, email addresses or home addresses, in public spaces or during live events. Additionally, keep all content shared within NURA Community confidential; refrain from sharing posts, comments or interactions with others outside of the community. Protecting privacy ensures trust and safety. If you're unsure, ask a host or moderator for guidance. Let's create a supportive space where everyone feels safe sharing. 

  6. No unsolicited research requests or questionnaires. NURA is a community where people with Long COVID, ME/CFS and commonly co-occurring conditions, and their partners and carers, come for support, connection and advice. Our focus is on fostering a safe and inclusive environment where people are heard respected.

  7. When participating in our community spaces, please avoid overtly political discussions. Our community is made up of people with diverse backgrounds and beliefs. By refraining from political comments, we aim to create an inclusive space where all members feel comfortable expressing themselves without fear of political bias.

  8. Safeguarding. We take the health and safety of our community members very seriously. If you see any posts or messages that cause you serious concerns about the safety of another member, please let us know.

bottom of page