The inspiration
Because so much time was wasted arguing about whether fibromyalgia was real, I think scientific understanding of the illness is still at least 20 years behind where it should be. My career has been dedicated to correcting this and fast-forwarding fibromyalgia into the realm of modern medicine. To do that takes some novel approaches which is why I have created with the FibroStories Database.
The FibroStories database provides a revolutionary way that people with fibromyalgia can learn from each other's experiences about what works and what doesn't, and find comfort in knowing we are not alone.
Over the past twenty years working in the field of fibromyalgia medicine I have observed a few things repeatedly and consistently. First, humans with fibromyalgia are hungry for connection. We want to know we are not alone and not crazy. We are searching for hope as we ride this frustrating and isolating journey.
Hearing other peoples fibromyalgia stories helps us realize we are not alone in this battle. It builds community and defeats isolation. The stories might make you cry, make you angry, make you laugh out loud in recognition. Just knowing you are not alone can reduce the suffering associated with fibromyalgia.
We also want desperately to learn from the experiences of other people. Every time I attend an event that brings people with fibromyalgia together there is so much vital information exchanged in the moment. "Have you tried acupuncture?" "Did going gluten free help you?" "Have you found a yoga video that is fibro-friendly?" All this valuable data exchange is temporary and lost as soon as the event ends.
The same thing happens in The Fibro Show comment section on Youtube. Viewers ask questions or leave comments that rapidly disappear into the abyss of the comments section. (Also I am truly terrible at keeping up with comments on YouTube, my apologies everyone!)
I also feel sometimes like my brain is a sponge filled with the accumulated repository of information from the thousands of patients I have spoken with over the past 20 years. However human brains can be rather leaky, and add a touch of fibro fog and it's even worse! And sadly brains are not searchable by indexing or key words.
So all of this valuable information exists, but has not been useful as a resource to the community because it has been siloed, disorganized and spread all over the place. Observing this over the years, I wished there was some way this vital information could be preserved. Could it be gathered and organized to help people living with fibromyalgia, scientists studying fibromyalgia, and doctors treating fibromyalgia?
For years I dreamt of finding a way people could share their fibromyalgia experiences into a confidential, searchable database to enable us to truly learn from each other. For example, if a newly diagnosed patient is wondering if they should try going gluten free, they could enter the question in a searchable database and hear 20 other people's experiences. This adds much more data into their personal decision-making process. Or what if you want to know if anyone has found benefit from low-dose naltrexone, or psilocybin, or that sketchy supplement you saw on social media?
Of course I don't mean giving or asking for medical advice. I will always emphasize the important caveat that we all respond differently to interventions, so what works for one person might not work for another. "The body does not read the textbook" is one of my favorite medical quips. This is exactly why treating a chronic illness like fibromyalgia requires ongoing experimentation.
As each of us personally try new treatments and approaches we are own individual research experiments. We are human guinea pigs, and learn lots of useful information from our own experiences but that data stays within us. However when we combine data from lots of individual guinea pig experiments and make it accessible for others to access, then it starts to become much more useful scientifically and from a treatment perspective. We each are only a sample size of one. But if hundreds of "n of 1" data points are combined together, now we are learning from many guinea pigs. And as sample sizes grow they provide increasingly more useful and generalizable information. I hope this database experiment can help fast-track fibromyalgia medical care and research.
In this initial project, I am asking for anyone who has fibromyalgia and wants to share their stories to answer 22 questions about their experience in video format These recordings will then be indexed into a searchable archive available to the public but only at the level you approve.
The interview questions
- How many years have you had fibromyalgia?
- What symptoms did it start with and how did your illness progress?
- Do you think your fibromyalgia was triggered by a trauma, injury, or illness? If so, what type and please share any information about this that you feel comfortable sharing.
- Approximately how long did it take from first symptoms until you received a diagnosis of fibromyalgia?
- Estimate how many doctors and health care providers you saw before you were diagnosed with fibromyalgia? What type of health care provider ultimately gave you the diagnosis (PCP, rheumatologist, pain specialist etc)?
- Which of these fibromyalgia symptoms (fatigue, brain fog, or pain) bother you the most? How do each of these symptom interfere with your life?
- What part of your body has the most pain? How would you describe that pain (burning, aching, throbbing, stabbing etc.)?
- Do you feel your muscles are tender, achy or painful?
- Do you get restful, restorative sleep? How do you feel when you wake up in the morning?
- What tends to trigger a fibromyalgia flare (acute worsening of symptoms)?
- What helps you get out of a flare?
- What three medications, supplements or treatments have you found the MOST helpful overall to reduce fibromyalgia symptoms?
- What fibromyalgia treatments do you feel were the biggest waste of time, energy or financial resources?
- Have you found any dietary changes helpful to reduce fibromyalgia symptoms? If so, please describe.
- Have you ever tried acupuncture for fibromyalgia? Was it helpful?
- Have you ever tried low dose naltrexone (LDN) for fibromyalgia? Did you find it helpful to reduce pain or other symptoms?
- Have you ever tried myofascial release (MFR) or other therapies specifically directed at the fascia? If so, did you find it helpful to reduce pain?
- What self-care actions (like yoga, exercise, setting boundaries, pacing activities) have you found the most helpful.
- What has been the hardest part about having fibromyalgia?
- What's the worst thing a health care provider or loved one has ever said to you about fibromyalgia?
- How would you describe what having fibromyalgia feels like to someone who does not have it?
- Is there anything else you want to share about your fibromyalgia journey? Any words of wisdom or encouragement you want to share with a newly diagnosed person?
Hopefully this experiment can grow and evolve after this initial project. My dream is to create a living, growing fibromyalgia research universe (Fibro-Re-Verse?) where researchers and people living with fibromyalgia can submit questions to be answered by the community. I also hope these stories can be an important record keeping of the fibromyalgia patient experience. Maybe this is a way to harness the power of AI for good, to complement but not replace human voices.
The database
I think I found a way to accomplish these goals that does not require a large grant from Lady Gaga (although I remain, as ever, interested in talking with her about funding a Fibromyalgia Research Institute!) A company called Their Story offers a secure oral history video platform that harnesses AI to create a searchable database. They use AI responsibly and take privacy really seriously.
Here's how it works: You record yourself on video answering a series of written questions (or down the road by doing a one on one video interview with a human just like a Zoom call). That video interview is transcribed by AI, and the transcript checked for accuracy and corrected by a human. Both AI and a human generate key words for indexing. Keyword indexing is the process of assigning descriptive words (keywords) to digital content to make it searchable and discoverable within databases. When done manually by a human it is time consuming and imperfect.
But here is where this platform get really amazing. TheiryStory uses AI that does semantic searching, or context-based searching. For example if you ask "What is the best way to explain fibromyalgia to a child?" and the specific word "child" was never added as a keyword during the manual indexing process, the keyword search would miss the interviews where people spoke about telling their daughter about fibromyalgia. A context-based search would find those interviews because it gathers from the context that a daughter is another way to refer to a child.
Here's another demonstration of the potential value of this type of database. What if a researcher is writing a review article about common side effects of low dose naltrexone? They could include real people's experiences gleaned from the database and actually publish the answers (anonymously of course) in a review article about low-dose naltrexone. This could replace the time-consuming and expensive process of creating a survey, sending it out to hundreds of patients, gathering and organizing the responses, etc. Expediting the process of getting scientific information out to other researchers, health care providers and people with fibromyalgia is exactly what we need to get caught up!
The safety rails
Sharing in this way is a generous donation of your time and lived experience that I deeply appreciate and take very seriously. If you are freaked out by the use of AI in this project (and it's understandable if you are), or about privacy there are some very important protections in place.
First, we use only fake names to publicly identify interviews, your real name and other identifying details will never be published. Although all interviews are recorded on video, the video or audio is only published in the database if you have approved that level of publishing.
You choose to what extent your information will be published in the database:
- written transcript only (most private)
- written transcript plus audio read aloud by Dr. Ginevra or another narrator
- written transcript plus audio (your voice but no image, like a podcast)
- written transcript plus audio and video (least private but most helpful)
Including audio and video is ideal because of the emotional resonance that comes from from visual communication. But the choice is entirely yours, and ANY level of usage of your information is a generous and valuable gift.
You can also change your preferences later, and at any time request all your data be withdrawn completely by sending an email to contact@fibroresearch.org.
In order to make the most of your generously submitted time and information, on occasion clips of related content may be extracted and combined for educational purposes at here at fibroresearch.org (home of The Fibromyalgia Research Library and The FibroStories Database). For example, a montage of clips of five people sharing their personal experience with a new medication might be published alongside a post reviewing how that medication works in the body.
Privacy protections in place
1) All interviews are publicly identified by a fake names only. Be creative, think of it like a pseudonym you might use if you were writing a risqué novel. The name you wished your parents had given you. Or your favorite plant or flower or food or artist or actor, perhaps combined in a creative way. So you will only ever be identified on the database by "Chance Radish" or "Mango Lavender" or whatever fake name you have designated.
2) Legally we do have to gather your real name but it will never be published and is only accessible to authorized staff of the Fibromyalgia Research Library.
3) Your information will never be sold or used for marketing purposes.
4) Any researchers or scientists using the database may not publish any information extracted from The FibroStories Database without first getting prior consent so we so we can verify it meets our strict privacy requirements. Any researchers please email us at contact@fibroresearch.org.
Read the full terms and conditions here
I hereby give this recording as a donation to the Fibrostories Database and the Fibromyalgia Research Library, for such historical and scholarly purposes as they see fit. The information provided in your interview joins a searchable, anonymous database that can help scientists, health care providers, and others with fibromyalgia.
By signing this consent you give permission for your information to be published in the FibroStories Database and The Fibromyalgia Research Library at www.fibroresearch.org, but only at the content level you have specified.
You choose the level of information you are willing to have published in the searchable database. Although all interviews are recorded on video, you can limit publication on the database to 1) written transcript only 2) written transcript read aloud by Dr. Ginevra or other narrator 3) written plus audio or 4) written plus audio and video. You can also withdraw your consent at any time and request that all your information be removed from the database by sending an email to contact@fibroresearch.org.
Your privacy is our top priority. Your data will never be sold or used for any commercial or marketing purposes. The only identifying information that will ever appear publicly in the database is a fake name. Your real name will NEVER appear anywhere publicly in the searchable database.
The FibroStories Database, the Fibromyalgia Research Library, Ginevra Liptan and Ginevra LLC reserve the exclusive rights to the content of any submitted interview including the reproduction, distribution, and display in print, visual, electronic, or other available media. We reserve the right to post clips of related content for educational purposes on The Fibromyalgia Research Library at www.fibroresearch.org, and via email newsletter to subscribers of Dr. Ginevra's Fibromyalgia News.
On occasion, we may want to share a portion of video, audio or written content in an external forum for educational purposes, such as The Fibro Show on Youtube. This will never be done without obtaining your prior written consent and is completely voluntary. In order to ask for your permission we will contact you via email, mail or phone.
The Fibromyalgia Research Library, FibroStories Database, Ginevra Liptan, Dr. Ginevra, Ginevra LLC and www.fibroresearch.org can assume no responsibility for misuse of literary or copyright restrictions by users of unrestricted material beyond prevailing professional ethics and standards.
Information in the database is for educational/research purposes only and does not constitute medical advice. Always discuss any new medications or treatment with your own personal health care provider. You must not give, request or receive medical advice in this forum.
Meet the Fibrostories Database
Feeling inspired?
A brief how-to video will be one of the first things you see when you click the link. These interviews are designed to be casual and conversational, not formal or as if you are reading an essay. Just grab a cup of tea, sit down and chat! It can be helpful to review the questions beforehand and jot down a few notes ahead of time to counteract fibrofog. Each response can be as short or as long as you want, and you can also skip any questions you don't want to answer. At the end you can choose to rerecord the entire video interview if not satisfied, but we are looking for reality not perfection here. You can see my imperfect example as the first entry in the database (I always experiment on myself first!). Skip any questions you don't want to answer, and you can rerecord your session as many times as you like before hitting submit. You can also do it in several sessions. After recording your video interview, you will read and agree to the terms and conditions and dictate what level your information will be published in the database.
Want to help but this video interview is just not for you?
Whether it's privacy, AI or other concerns, I know this interview project is not right for everyone. There are some other ways to help. Share this page with others who might want to participate and sign up for my email newsletter Fibromyalgia News to be notified about future opportunities. You can also support the project financially by purchasing a copy of my book, The FibroManual which is available in paperback, kindle and now audiobook form.