Should we try to make our point during Coronavirus?

Not dead yet!

Well-Known Member
I was watching news about Coronavirus and I was thinking of all the "community spread" fears in the US. Our response to viruses in general is "Oh whatever, you're fine, go home and eat soup." It's medieval. We've created a medical environment of denial about anything that can spread in a contagion. Denial about Lyme, about parasites, about persistent EBV infection, about aftereffects of food poisoning. These (and others) are placed in the basket of "deplorables" as if they were beneath contempt. Tell a doctor you're afraid you may have a tapeworm because you rescued an animal that has them, and you will get scorned, even if you bring evidence of fevers, etc. So why wouldn't we be fools about Coronavirus? We've systematically denied that anything's wrong about so many things, it's hard to imagine we'd pay any attention now.

Am I putting it too harshly? Am I "capitalizing" on the global tragedy?

I don't know.

But I do feel this way.
 

Katherine Autry

Active Member
It makes me want to roll my eyes. There are so many terribly sick people here and now, being ignored and neglected. If I could trade 20 years of ME/CFS for a couple weeks of corona virus, I would, even if I were one of the 3% that actually end up dead from it. The exchange would be 20 good years I didn't get, and I'd say that's a really good trade.........As it is we are the living dead, aka Zombie Apocalypse, so we get less respect than completely and certifiably dead people.
 

GrammaLinda

Active Member
It makes me want to roll my eyes. There are so many terribly sick people here and now, being ignored and neglected. If I could trade 20 years of ME/CFS for a couple weeks of corona virus, I would, even if I were one of the 3% that actually end up dead from it. The exchange would be 20 good years I didn't get, and I'd say that's a really good trade.........As it is we are the living dead, aka Zombie Apocalypse, so we get less respect than completely and certifiably dead people.
 

serotone9

Member
What we should do is take advantage of this situation to ask the media why medical/health care professionals and researchers aren't doing more to address the immune system dysfunctions that people with ME/CFS clearly demonstrate that make them more susceptible to death from COVID-19. We should loudly demand an explanation for why the natural killer cell and other cytokine and immunolgical dysfunctions we have that are clearly documented in the research are being ignored and swept under the rug by the mainstream medical community, which puts us (and those we come in contact with in the wider community) at increased risk. We are at grave danger from being exposed to Coronavirus, much moreso than the general population, and our lives are being marginalized by the medical community. I want an explanation for why they're not doing anything to protect the health and welfare of vulnerable populations like those with ME/CFS.
 
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Not dead yet!

Well-Known Member
I"m afraid that I won't be able to tell if I do get Coronavirus until it's too late. I have to use a CPAP even though it's technically only marginally required for me. If I don't, I get my heart racing just after I fall asleep and I wake up gasping. I get out of breath all the time, sometimes it's asthma, other times not. I constantly feel like I have a flu. I have trouble knowing when I have an infection because my body always feels sick.

My pneumonia vaccine is out of date, I should get a new one, but I"m literally too weak to plan the visit, half tempted to go to a local pharmacy to get it. But I don't want the flu one with it. That's the last thing I need. The pneumonia one works well for me though. I was able to clear my sinuses, so I'm guessing that this weakness is just normal for me right now. I made a plan with my husband that if I can't clear my sinuses and start coughing, I'm going directly to a hospital.

I've been feeling unusually weak for a couple of weeks before the Coronavirus news started circulating. I started to feel weaker and weaker around the time China was building that new hospital in 10 days, actually about a week before that is when I started to feel odd (I think.. my sense of time is questionable). I thought it would pass by now. But it killed my sleep right away. Drugs for sleep only work for short periods on me.

All this "everything's fine... just wash your hands" nonsense smacks of how all infections are treated in the US. It seems like business as usual. :rolleyes:

I remember when my friend died of pneumonia, before I was ill. I remember thinking how weird it was to have someone die of an infection. Then I got ill for over 10 years, and now I understand perfectly how that can happen in the modern day. I just don't know how to make someone understand it, someone who isn't already sick.
 

Not dead yet!

Well-Known Member
OMG this is so satisfying to read in a dark humor sort of way: https://news.yahoo.com/cough-fever-not-enough-americans-find-as-strict-rules-limit-who-gets-tested-for-coronavirus-184704103.html

I literally have no love for the Trump admin, but it's not Trump's fault that Infectious Disease is practiced with such complete idiocy in the USA. What that person was told is nearly word for word what I was told by an ID doctor when I asked for further Lyme or other testing and listed the countries I had visited and the dates. She literally said that if I wanted to be tested for sleeping sickness I'd have had to have visited a specific valley in Africa within a year of making my complaint. And that even if she tested me and it was positive, she'd have to throw the result out because there was no reason to suspect I had it.

These are the people who are in charge of our health. The see no evil, speak no evil, hear no evil types. Nothing to see here, move along.

This is literally the first time I"ve felt sorry for Trump. Seeing him say "anyone can have a test if they want one" and then this. And I know what the truth is because I lived it long before now. For once, he just looks naive to me instead of malicious.
 

Not dead yet!

Well-Known Member
Someone mentioned this on reddit, there's an antiviral interferon therapy that works against coronavirus, why aren't we using it? https://www.telesurenglish.net/news/cuban-antiviral-used-against-coronavirus-in-china-20200206-0005.html

Another article: "
Treatment protocol includes the use of Interferon alpha 2B as one treatment option. This drug is developed and manufactured locally and is used to treat viral infections such as Hepatitis B and C, Varicella-zoster virus, HIV/AIDS and dengue fever.

Chinese medical authorities have chosen to use the Cuban drug to fight coronavirus because it is able to make up for Interferon deficiencies produced by the virus in the human body, and strengthen patients’ immune system, official newspaper Granma reported."
https://havanatimes.org/features/what-cuba-residents-are-being-told-about-coronavirus/

Sounds interesting.
 
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ono_desu

Member
Someone mentioned this on reddit, there's an antiviral interferon therapy that works against coronavirus, why aren't we using it? https://www.telesurenglish.net/news/cuban-antiviral-used-against-coronavirus-in-china-20200206-0005.html

Another article: "
Treatment protocol includes the use of Interferon alpha 2B as one treatment option. This drug is developed and manufactured locally and is used to treat viral infections such as Hepatitis B and C, Varicella-zoster virus, HIV/AIDS and dengue fever.

Chinese medical authorities have chosen to use the Cuban drug to fight coronavirus because it is able to make up for Interferon deficiencies produced by the virus in the human body, and strengthen patients’ immune system, official newspaper Granma reported."
https://havanatimes.org/features/what-cuba-residents-are-being-told-about-coronavirus/

Sounds interesting.
I'm actually talking to my doctor right now about treatment options for chronic ebv/chronic fatigue and i found a very promising treatment with an actual study https://pubmed.ncbi.nlm.nih.gov/12393655/
people were cured from malaise and fatigue according to the study. i have NO CLUE why I just found out about it.

it's called ebv-ctl therapy and it's in open expanded access protocol so technically anyone with elevated ebv antibodies can qualify. my plan b is interferon because it has some toxicity but honestly i have found studies that show promise for each treatment.

the company that does the first treatment is called atara they are based in california. I am very much looking forward to trying interferon or ebv ctl therapy. My doc is going to send an email with my symptoms/sore throat pictures/ and antibody levels next week and I'm *very* anxious for the reply lol.

But since interferon is used for both viral(chronic hepatitis) and auto immune(MS) conditions i think that its absolutely worth trying. theres people in japan getting cured from severe progressive chronic ebv with stem cell treatment so it makes sense that more moderate manifestations of ebv related condition will respond well to other less extreme forms of immune therapies!!
 

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