Advancing Myalgic Encephalomyelitis Research to Transform Healthcare | Dr. Alain Moreau, PhD
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- Опубликовано: 25 авг 2024
- Dr. Alain Moreau discusses how myalgic encephalomyelitis research can transform healthcare and presents the challenges and opportunities ahead.
Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022.
Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Thankyou so much, all of you who are doing a tremendous job, to solve ME and autoimmune disease!
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Absolutely groundbreaking! Thank you from an ME+FM+EDS+POTS+NEURO+IMMUNE person. (U.K)
I know exactly how you feel! I was just diagnosed last year by a geneticist with hEDS and HAT at 52 years of age. I have MCAD from the Hereditary Alpha Tryptasemia. Was diagnosed with POTS over 15 years ago. My earliest symptoms started at birth with GI and respiratory/immune problems. I have seen doctors all my life and as a young adult was given multiple psychiatric diagnoses despite my continuing and worsening physical problems. At 36 I had to go on disability from my job as an RN and haven’t been able to live a normal life since. For ten years I did what you did, made a photos diary, noted my symptoms as they occurred and created a medical timeline. I took this to one of my specialist and asked him to take a look. The conditions affect every body system and all testing for the autoimmune disorders kept coming back negative. The doctor thought that something was causing it all and it started in childhood, so genetic causes needed to be considered! You said the same, your symptoms started with joint pain and other symptoms in childhood, maybe you could be evaluated by a geneticist? I knew hEDS was a possibility, but I had never even heard of HATS. I knew what mast cell disease was, but not that their is a genetic test to see if you have an extra Alpha Tryptase gene, therefore making too much tryptase! So much of what you described has been attributed to HATS. My geneticist thought at first that it even explained my joint pain and hyper -mobility. After a year of collecting further family history and medical info it was determined that both hEDS were the diagnosis. I hope you are able to get a concrete diagnosis, despite what many doctors say, it really can help you cope with things and you are never too old to get correctly diagnosed! Actually, I think the older you get and the longer you go undiagnosed, the more important it is that you continue to seek your diagnosis! You are not crazy and the symptoms have not been all in your head, despite what doctors and other people in your life have told you or intimated to you. Carrying all of those feelings along with you for years, becomes a heavy burden that you shouldn’t have to shoulder. It’s difficult to not let belittling comments, continued dismissal of real symptoms or the attributing everything to a mental illness get the better of you at times! All of this because none of the medical community has been able to figure out your medical mystery and instead of just admitting that they throw their own insecurities onto their patients! I thought it was first so no harm! Best wishes to you!😊
Absolutely fascinating. I can see such great potential in this line of research. Thank you so much for your insight and your efforts.
Mthfr gene