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Jennifer Brea 49m
But I think many ME patients don’t realize this b/c we tend to follow only “our” scientists.
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Jennifer Brea 50m
This isn’t an advocacy strategy. It’s a science/seeking answers strategy. If the researchers don’t link up, it’s going to take us 10x longer to solve this. I think patients have a role to play in ensuring that happens.
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Jennifer Brea 50m
There are already many researchers working on this (researching mast cells in ME, genetic connection between EDS+ME, and POTS research is finding the same autoantibodies as in ME research).
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Jennifer Brea 55m
Replying to @painandcats_
Oh you don’t need to! I was just confused. Thanks!
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Jennifer Brea 55m
The issue is already confused. Very. I think the only way to sort it out is to acknowledge it and try to accelerate the science that will help us understand how to properly categorize, diagnose and treat everybody.
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Jennifer Brea 56m
When and went to the dyautonomia international conference, they met ppl who would meet the diagnostic criteria for ICC-ME who simply had a different diagnosis.
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Jennifer Brea 56m
It is only by seeking care in these different fields that I’m able to get the kind of care IMHO everyone should have.
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Jennifer Brea 1h
And if I see an neurosurgeon for my intracranial hypertension, I’m going to get much better care for that even though it was an ME doc who was the first to suggest Diamox.
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Jennifer Brea 1h
But if I see a cardiologist w/ a dyautonomia specialty who sees patients with I’m going to get much better POTS care than from my ME specialist. If I see an MCAS specialist, I’m going to get much better care for my MCAS, even if my ME doc also treats MCAS.
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Jennifer Brea 1h
They often have specific expertise ME docs do not. I do consider all of this a part of my ME (all of the symptoms of my co-morbidities are in the ICC).
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Jennifer Brea 1h
Whether or not we call them separate things, or they are indeed are separate things, there are research communities and specialists clinicians around each of these diagnoses.
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Jennifer Brea 1h
Doctor who sees nothing but complex cases that often spend years undiagnosed: “You are a curve ball.”
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Jennifer Brea 2h
Replying to @GemzME
If you find interesting links/studies, you can always go to the “Discussion” tab of any page and paste the link. That way it’s there in the future to incorporate into the page if you feel better. Or for someone else if they come along and decide to update the page.
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Jennifer Brea 2h
That’s awesome!!! Your contributions would be much appreciated.
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Jennifer Brea 2h
I wish there was a strong ethic among nurses to not wear perfume and scented hair products to work. It’s a bit like a teacher showing up to kindergarten covered in peanut dust. (Nurses, you know I love you but seriously, scent-free should be a thing.)
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Jennifer Brea 2h
Some reasons possibly why :)
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Jennifer Brea 3h
So many wonderful stories and insights but don’t forget to use the hashtag so others can read them!
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Jennifer Brea 3h
One last thing (and then I’ll leave you alone, John), here is a study from last year on abnormal mast cell populations in patients w/ ICC-ME: this /= to MCAS but could explain why PWME are more prone to MCAS.
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Jennifer Brea 3h
You know, I had written about mast cell + Coxsackie here and completely forgot about it! If you have anything more to add, please do feel free to hit “edit”
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Jennifer Brea 3h
Replying to @painandcats_
So weird but Twitter won’t let me retweet this....I can retweet pretty anything except a few specific tweets on your timeline. This one is ghosted out. (I can “like” but not RT)
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