Alyssa Milano's long haul COVID-19 battle - Brain Fog
Posted Sep 23, 2020, 6:01 AM UTC
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Our advocates are helping to get those news articles about long-term effects out there, so that there is a big enough spotlight on it so we can’t be ignored anymore. Whatever attention they get can also be helpful for us in the long run. I actually have more hope now than I have in a long time.
Still, I totally get where you’re coming from. I’m on year 16. It’s a bit like living in the Twilight Zone seeing long-haulers use our language and cope with our symptoms, right? A lot of them will get better thankfully, but the ones who don’t may be the key to unlocking this thing finally, or at least making some real progress.
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Me too, my friend...me too. Hugs.
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Sir/ma'am/fine internet person - YEP! 100 percent get that. The attention to this is somewhat a slap in the face - I posted it because it's interesting but I can't escape that it's treated differently to more serious levels of this kind of problem that we face
If she was getting our treatment people would accuse her of just enjoying the attention she got during her active covid infection and wanting to maintain that attention whilst not having to return to work... The stupid notion that it's a fun thing to be housebound, disconnected from your communities and unable to tolerate environmental stressors and senses
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100% agreed! It's really surprising to me that people think this is something novel. Feeling hopeless makes sense in the world right now especially when you are chronically ill. I hope that you can find hope again soon.
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The type of coverage is new. Back when the Incline Village breakout happened, they simply called it Yuppie Flu. So at least this time they're not dismissing it.
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Maybe a lot of them need an expert to tell them what it is. (Not sure if that's from CYA or ego - on the part of both doctors and reporters.)
Maybe they were taught that CFS/ME is psychosomatic or something but THIS is real!
It would be nice if (when?) others state that it's the same as CFS, or very much like it. I dunno - we're not in control of that; I think I'll be glad if the research is done even if we aren't acknowledged. But that's me, now - you don't have to feel the same as I do, and I'll probably go back and forth between the two. :)
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Going on 22 years. Definitely getting worse.
I hate these covid people so much because they are stupid and getting all this attention from doctors while a large majority of us were blown off by doctors.
I also have hope that these people might help us. But the likely hood of finding a cure is really low.
I literally went to my gp, talked to her for an hour longer than my usual appointment, explained every little thing about cfs to her, just for her to blow me off and not let me see a specialist. Like wtf. How can you listen to my story of 22 out of 39 years of my life and just ignore it?
This is the nicest person I've ever met, and she blew me off. And now all I can think is these new cfs cases were idiot people who didn't wear a mask and poor them... ive literally been quarantined since late January, I rarely go out. A lot of these people don't wear masks over their nose, they don't give their kids masks. Like wtf is wrong with you. Don't take your kids to the store if they dont have masks. Logic 101.
Sorry, these people piss me off. Rant over.
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from around the 40 second mark of this video Alyssa Milano is describing her brain fog post COVID (she talks about muscles before that) and she does a pretty good (if brief) job of describing how Fog feels.
interesting the said her function is between 40-60% of normal, most of my acquaintances with CFS are (like me) sub 15% and a few (me in this ballpark) below 5%
e.g. if we tried to do 10 minutes worth of something we could do for around 6 hours when well we would incur serious PEM.
really is sounding like its either classic post-viral or actual moderate CFS, if any sympathy goes towards this (generally, not milano herself specifically) that would help us.
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Some people also just have brain fog without pem with various reasons like allergies, gut issues etc, although this covid mess definitely sounds more like cfs from what I know.
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To be fair, her function may have not had hit it’s low yet. For some of us, we were functioning well compared to others who have CFS. I had only muscle weakness for about five years. I was probably, what I consider, at 60%. I worked out some and worked long days, etc. Then i got pregnant, and it was the worse, most depressing time of my life. I lost practically most of my function, fell down the stairs, was stuck in bed most days, contemplated on getting an abortion. I stuck through it and had my baby. Another body crash happened. I was probably at 10% for a year and a half. My CFS was due to EBV and that virus took advantage of the changes in my body. It was horrible. For Alyssa Milano, it could get worse for her. I hope it doesn’t because no one deserves this but, CFS still needs more attention and research.
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I have lost sight of what my percentage is because I can’t remember normal, but in the beginning I would say I was at 20-40%.
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That's terrible for her, she has a daughter and that must be so difficult for their family.
On another note, I used to be a pretty big fan of hers, until she spoke out against Tara Reid's accusation of sexual assault against Joe Biden. I found that really hypocritical considering her previous stance supporting Dr. Christine Blasey Ford. I know this is not related to her health and I really do wish her well. I just can't support her career anymore, after that awful decision. I'm not even a Joe Biden supporter (I'm Green Party.)
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Yeah - I'm thinking the same things about her attacking Tara Reade etc.
Like you I'm also really sorry she's dealing with the same things we've all been for long, but, lost a lot of respect for her.
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I wonder if she has breast implants
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Not sure why you're getting downvoted because Breast Implant Illness (BII) is a very real thing. I've known several women who experienced it and whose health dramatically improved once they were out.
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People probably mistaking it for folks with lewd obsessions with Milano on Reddit - it was hard for me to infer what they meant till I saw your comment :)
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I’m a survivor of breast implant illness and it causes SEVERE brain fog. Everyone who’s downvoting do your research before you do so.
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Why did this video get so many dislikes? It's stuff that needs to be heard, we barely ever hear about Covid from the infected point of view.
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Anything Covid is very politicized and target of trolls and brigading, especially on Youtube. It's usually not even real people, ignore.
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Maybe with the surge of post viral illnesses with brain fog, more money will be invested in CFS research. It blows that it took THIS for people to pay attention to the issue. But I guess it’s better than nothing
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Alyssa Milano started the me too movement. If she turns to ME advocacy she could make monumental changes for us.
I cried watching this video of her, she doesn’t deserve this (none of us do) but god it’s heartbreaking and I’m so sad for her
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I'm confused by the hairloss thing. That amount looked pretty small for brushing your hair? But maybe I'm just not normal? I thought it was normal to lose up like 200 strands a day?
Anyway, you could tell she was really emotional in the video so it was pretty sad to see. Hopefully the coverage for COVID 19 long haulers makes a difference for CFS research!
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Yup. Interesting view... at these levels basic health is an emergent property... you either have or you don’t. Clueless people everywhere.
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It’s so devastating loose your ability to remember/recall words. It’s visible throughout her interview. I would not wish that symptom on anyone.
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I got CFS after getting mono and hair loss was a big problem for me in the beginning too.
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If she infected someone after having two negative tests, that's not her fault. (2:35)
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She does a good job describing it, but you can also see it. She stops in the middle of sentences and I can tell she’s looking for the right word. Sometimes she finds it and sometimes she just moves on or around it.
I hope that people will actually associate this with CFS instead of it just being about Covid. I’m definitely worried because it’s being called something different, and CFS may be overlooked yet again. But at least there will be research into it due to this.
Yep. I sent it to my wife for that reason. After 10 years I have all manner of tricks to mask my brain-flubs between pauses, filler words, posture changes, facial expressions etc