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I’ve been reading your roadmap. You’ve done a very impressive job with that as well. Thank you, for all that.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Anatomy of an enterovirus / Coxsackie B virus outbreak — overt illnesses and subclinical symptoms
- Thread starter Hip
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Judee
Psalm 46:1-3
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There is this from the NIH too...a very brief explanation but I think it also shows how serious this disease can be and how minimum expenditure of energy can make us worse: https://www.nih.gov/mecfs/about-mecfs
Praying for your situation. I caught this when I was young. We eventually had to switch to homeschooling for me...I just couldn't get to a school anymore.
Even getting through the schoolwork with homeschooling was difficult. Thankfully my Mom was not pressured by school officials. That would have put so much stress on both of us so I can really feel for you and your son.
You're right it's awful that when we're dealing with such a draining illness, people cannot even have that degree of understanding and compassion.
Judee
Psalm 46:1-3
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- 4,497
- Location
- Great Lakes
I'm sad to hear this. I had noticed you posting on PR less frequently and wondered.
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I’m so sorry to hear you have been dealing with this for so long. We are at almost seven years, and more battles than I can count. My son has been suffering with this since the age of eight. He is now 15.
Originally he only had two 1 & 5 elevated titers. Today I finally got the doctors office to release a copy of his lab. His titers are elevated in all, 1-6. His doctor is trying to dismiss it as past infection. I think I’ll save that battle for another day.
Right now I’m trying to fight off the school trying to force me to release all his medical records, & court.
It’s frustrating how not on top of viral infections, & the devastating impacts they can have, the medical community is. It’s an exhausting battle, & I was already exhausted from the illness.
I really appreciate you directing me to the ME/CFS. It’s like you filled in my brain lag for me. I don’t know how many more years could have passed with all the stress. I have a trial with the school the day after tomorrow, which I’m hoping gets rescheduled. Maybe then there may be a chance to do something with the Me/CFS before the next one.
I’m keeping you in my prayers, and again thank you so much for the direction, & all the great information.
Originally he only had two 1 & 5 elevated titers. Today I finally got the doctors office to release a copy of his lab. His titers are elevated in all, 1-6. His doctor is trying to dismiss it as past infection. I think I’ll save that battle for another day.
Right now I’m trying to fight off the school trying to force me to release all his medical records, & court.
It’s frustrating how not on top of viral infections, & the devastating impacts they can have, the medical community is. It’s an exhausting battle, & I was already exhausted from the illness.
I really appreciate you directing me to the ME/CFS. It’s like you filled in my brain lag for me. I don’t know how many more years could have passed with all the stress. I have a trial with the school the day after tomorrow, which I’m hoping gets rescheduled. Maybe then there may be a chance to do something with the Me/CFS before the next one.
I’m keeping you in my prayers, and again thank you so much for the direction, & all the great information.