2/

“Now, more than ever, we need a robust health system with well-paid staff, and a new focus on the research and treatment of post-viral illness.

Not as a psychosomatic phenomenon, but as a severely disabling physical disease that can and does kill people.”

#myalgicencephalomyeltis #ChronicFatigueSyndrome #PostViral #PostViralIllness #postviralsequelae #PostViralSyndrome #LongCovid @longcovid

Up until quite recently, Eric Topol did not believe in post-infection disorders. He was in the habit of making remarks that many disabled people found distressing and offensive.

You read as you like, of course, but I'm not interested in experts who took on *faith* that an entire class of diseases didn't exist for most of their career, and advised people based on what could only be described as a religious belief.

#PostViral #DisabilityMasto #LongCovid #MECFS

For #doctors (and people in general) who claim not to understand #PostCovid or #LongCovid:

Have you not heard of #GlandularFever/ #Mononucleosis (caused by #EpsteinBarr #EBV)? Do you remember high school when whole classes were wiped out for months? Some students came back after a month. Some a few months. Some off and on because they pushed too hard. Some never came back to school. Some had it reactivate years later.

It was accepted that this happened. Doctors knew this happened and tried to manage it the best they could because we couldn’t contain the virus. Parents accepted it.

#PostViral syndromes aren’t new and it’s amazing how short your memory is. This was the 1990s not the 1890s I’m referring to. It was endemic at that point. It’s happening again except this virus is far worse and we had a chance to control it. You can also catch it over and over and cause more and more damage.

Well, I'll be damned. I think the three days of antiviral actually worked. (To be clear, it was three days plus one day of recovery.)

Now I'm wondering whether I can get the same effect if I double up the antiviral for two days with one day of recovery each month. (It'll wreck my stomach, but could be worth the trouble.)

And what about microdosing? I have questions! (Do you have answers?)

#PostViral #DisabilityMasto #MECFS #MedMastodon

I'm spending three days #experimenting with a heavy-duty #antiviral to see if boosts my energy for the rest of the month.

The grogginess it causes is too reminiscent of my worst sick years (which makes me feel panicky).

What would help: If you would please reply with silly memes, absurd jokes, interesting stories, everyday magic, and goofiness, it would do wonders for keeping my mind off my mind.

(Thanks in advance for anything and everything.)

#PostViral #PleaseHelp #Fatigue

COVID isn’t just infecting you—it could be reactivating viruses that have been dormant in your body for years
https://fortune.com/well/2022/12/26/is-long-covid-chronic-fatigue-syndrome-myalgic-encephalomyelitis/
#LongCovid #longcovidkids #COVID19 #chronicfatigue #mecfs #postviral @FortuneMagazine

@schmutzie I wonder if this discovery about #Parkinsons might also apply to people like me who have #PostViral disorders because the mechanisms that cause the damage are quite similar.

In the same vein, I've also been wondering whether treatments that have worked for me like Low Dose Naltrexone (#LDN) and low dose psych meds with intense anti-inflammatory properties will be applied in the converse.

(Sooner than later, I hope.)

Would you like to learn more about Long Covid in children & young people?
View or Download our free support guide packed with info, signposting and research.
Chapters for families, children & young people, health care professionals & educational staff.
#hiddendisability #PostViral
#LongCovidKids #LongCovid #Support #Christmas #mecfs #Pans #Pots #Dysautonomia #mcas

https://www.longcovidkids.org/support-guide

So as I approach 6 months post-covid, I'm at the point where I am going to try eliminating gluten. I am however a pasta hound and for the last six months I have existed on things on toast or ready meals. Can any CFS/ME/covid long haulers who have made the switch please give me pointers, quick and easy recipies, advice etc. Thanks
#LongCovid #ME #CFS #PostViral #Fatigue

This is a disturbing read, but I hope abled people will read it and know what some people with disabilities are going through. This is from Canada, but it's happening the world over.

The disabled are choosing to die because they can’t afford to live
https://ipolitics.ca/2021/11/15/the-disabled-are-choosing-to-die-because-they-cant-afford-to-live/

"The inadequate money and care for people on provincial disability assistance is part of a larger societal bias that treats illness as a moral failing."

@ChronicIllness @MECFS #PostViral #Disabilities #Disabled