In regard to the event by Human Health Project, “Finding Credible Information Online,” which was held on June 11, 2021, three panelists discussed their shared experiences in living with fibromyalgia. They also gave insights on the importance of finding credible information online. The first panelist, Katarina Zulak from Canada, started by talking about her own personal experience with fibromyalgia, which is a condition that causes pain in muscles throughout the body. Katarina also discussed how finding reliable information online, including from search engines such as Google and healthcare websites such as WebMD, helped her to find the right diagnosis for her fibromyalgia. Katarina had shared the online information she found with her OBGYN that helped lead to the correct diagnosis. After receiving her diagnosis, Katarina was able to receive a course of treatment for her fibromyalgia from a pain clinic. While the treatment from this pain clinic did not fully cure Katarina from her fibromyalgia, Katarina’ recovery and treatment was nevertheless helpful in reducing some of her symptoms. In addition, Katarina also discussed what to look for when finding credible information online. These include seeking out published articles, which can be helpful for a patient to consult with their doctor regarding questions, that are also peer reviewed and include references. 

Another panelist, Kelly Mitchell from Northern Ireland, discussed her experience with fibromyalgia and the painful symptoms she experienced. While Kelly initially thought that her illness may be due to rheumatoid arthritis, a general practitioner’s input led to the correct diagnosis for Kelly, regarding her having fibromyalgia. Kelly noted that her illness with fibromyalgia had negatively affected her professional work and social life due to her painful symptoms. However, despite the challenges Kelly faced, Kelly made positive changes in her life as she coped with her fibromyalgia. While Kelly noted that she initially shifted her work schedule due to her illness, this was beneficial for her as it allowed her to work part-time and focus on treating her symptoms from fibromyalgia. Kelly also noted that she had also undertaken activities since her diagnosis, including meditation, to help destress and decrease her symptoms from fibromyalgia. The notion of finding credible information online is also an important point, because it can be helpful to patients who have been diagnosed with fibromyalgia, such as Kelly, who seek to learn more information regarding their illness.  

Finally, panelist Lynne Matallana, from the US, also discussed her experience with fibromyalgia. Lynne’s illness, while unfortunate and severe, also led her to take positive action in her life. Lynne founded the nonprofit organization that she also serves as the President of, which is the National Fibromyalgia Association. Lynne also gave some insightful and important information regarding fibromyalgia. This includes making sure that a diagnosis for fibromyalgia that is given for a patient is actually correct, as symptoms for fibromyalgia overlap with other illnesses. She also talked about ways for people to cope with living with fibromyalgia, including setting realistic expectations that can be helpful to patients. In addition, Lynne also had relevant information about ways to find credible information online regarding fibromyalgia as well as other health related information. She noted that it is also beneficial to look for additional sources to find health related information, if a prior source does not prove to be informative.

Overall, these panelists discussed important information in regard to living with fibromyalgia, as well as regarding finding credible information online. These experiences and insights shared by Katarina, Kelly, and Lynne were significant and can  ultimately be useful to a wide range of patients and individuals.  

More information about the HHP online event, “Finding Credible Information Online,” can be found here: https://humanhealthproject.org/event/finding-credible-information-online/

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Human Health Project (HHP) Programs HHP is a comprehensive holistic health literacy charity. Explore our Shared Patient Information on health conditions like Migraine and Lupus, featuring Causes/Triggers, Treatments, outcomes, and side effects (more conditions being added). Dive into our Learning Academy's short patient education video courses covering topics like Your Rights as a Patient, How to Research Online as an ePatient, and Peer-led Patient Advocacy Workshops. Don't miss our upcoming and past Peer-to-Peer event videos.