LUPUS UK are working with researchers at Cambridge University and patient groups to look more deeply at your views and experiences. This is to help raise awareness and highlight common difficulties including unmet medical and emotional needs with the hope of improving recognition and support.
Many of you kindly completed the online questionnaire about your journey to diagnosis and medical experiences. Cambridge University researchers have been interviewing some of you in more depth about your experiences and MelanieSloan from Cambridge will feedback to you all on the forum with some early findings soon.
We have decided that a very good way to raise awareness and include even more of the group's views is to look at posts and responses on this forum from over the past few years and analyse them for common themes. By publishing these (all anonymously) in a scientific journal (and possibly LUPUS UK leaflets), your combined views and experiences will reach a much wider audience and provide information about what YOU feel are the most important parts/challenges of living with lupus and other related diseases.
We are going to be asking some questions over the next few weeks about your experiences for the research study. Please feel free to answer as you would any other post; we will only use any quotes you have provided with your direct permission and they will be anonymised. Please follow the link below for a detailed information sheet.
Question 1: What makes a positive/negative medical appointment? - healthunlocked.com/lupusuk/...
Question 2: Can you describe how fatigue feels and the impact it has?
Question 3: Were you told it was "in your head"?
Question Four: Your thoughts about fibromyalgia diagnoses.
Question 5 - Your experience(s) of inequality