Long Covid Policy Congressional Panel | Solve M.E. & Global Interdependence Center

[@Patriciatjej]

Welcome to our ME-patients world. Been sick in M.E. for soon 18y.

[@KidCity1985]

Welcome to my world. 26 years.

[@TL-ch1xd]

Diagnosed with severe M.E. (incl. POTS, chranial instabilitet, Chiari, Mastcell activation, and H-EDS). Affected by severely debilitating physical, cognitive and mental symptoms since around 2003/2004. This is so much more than fatigue. My personality and mood can shift, I get symptoms that resemble ADHD, Autism and more. Extreme pressure in my skull, neck/spine/shoulder blade pain that is indescribable. Inability to understand and learn new easy tasks. Inability to focus and concentrate. I get burning, itching skin with face rashes and acne. Small wounds that takes over a month to heal. Inability to understand what I feel and want. Food intolerances, feeling poisoned in my head, pressure around eyes, anxiety, feeling like I’m crashed and severely beaten up and heavy like a rock (though I’m slim). Feeling like I have a hang over and like my body is going through the worst hormonal imbalance and like fight and flight response can’t ever switch off. Inability to relax (muscles contacting 24/7 on a deep level). Having to go to the bathroom directly after drinking (water and herbal tea). The list goes on. For me the ME is cyclic / relapsing between moderate to severe where it seems like I get a every other month - unprovoked flair ups (immune attacks, increased inflammation and reactivations of viruses and bacteria ?) where I can only lie and rest all my senses, my body and brain until a better week comes. If I do things my symptoms get worse in different degrees and I can feel a little better if I’m only completely still, quiet and alone - but that’s no life. It’s a constant balance between what kind of torture I’m choosing. At the same time it’s a hidden illness (and I do my best to act and seem healthy and “normal” the few times per year I manage to go out to meet a mutual friend to my sibling and I). I’ve changed my life, lifestyle, diet completely. Unfortunately, I have due to this - like so many others - also lost my social life, chance for a career, income/economy, identity, sense of self worth, self esteem etc. My sibling and I are the two only reasons I’m still here. What has gotten me from completely bedridden and unable to communicate and function at all has been strict diet, intermittent fasting and Biodynamic Chraniosacral Theraphy (thanks to my sister and my Chraniosacral practitioner who even came home to me to treat me at my bed). My heart goes out to everyone else who lives with this condition and has lost everything. I am so grateful for my sibling, I can’t imagine how those who are completely alone without anyone in their lives cope or even survive. ❤

[@TL-ch1xd]

PS And no I’m not naturally lazy or a complainer nor have I victim mentality. I’ve taken responsibility for my health and even questioning all the time how I think and behave etc. I struggled and tried to manage in silence for long until my system completa broke down. I did seek some medical advice and help from doctors before that - but no one knew what was wrong and told me to push through, exercise and to go to cognitive behavioural therapy - which I did. I have always been a person with drive, passion, ambition, zest for life and a love for other people and animals. I had goals and liked to work etc. So before getting diagnosed correctly, having to meet people in the medical field during years telling me things that I seemed to exaggerate, that everyone gets symptoms as we age etc. wasn’t the nicest as I at the same time was to I’ll and malfunctioning to express myself well in words.

[@KidCity1985]

@@TL-ch1xd I'm so sorry. 🥰

[@delawill40]

@@TL-ch1xd THANK YOU for posting this. A lot of what you described is very similar to what I experience. My ability to communicate that has become nearly impossible. I will try to look up info on the treatment you mentioned. Again THANKS for sharing the details that some of us are no longer able to communicate effectively.

[@TL-ch1xd]

@@delawill40 Thank you, and I wish you all the best. Yes, I have nowadays the luxury and extreme relief to be able to at times think completely clear and express myself well. I can try to write a thorough list here with things that have helped, when I can and if you like.

[@rosiep7337]

Welcome to my world 30 years!

[@luistirado88]

I have this disease. This is serious. Please find a cure for this.

[@davidnunes9147]

Like many of you, this is not new to me. I'm at 25 years. Luckily they're starting to take it seriously as a disease. Hopefully doctors won't be so dismissive anymore.