MEAction NOW
A
thread 1/3
Hello 👋🏼 Spoutible 🐳 community
I'd like to spread awareness about an illness ME/CFS that impacts 2.2 M 🇺🇲 and 17 M 🌎🌏

You must've never heard about it - it impacts me. TODAY I am HOPING🤞🏼 YOU🫵🏼 will spare a few mins to learn about it and share about it.

Thank you 🙏🏼
MEAction NOW @MEActNOW
Several studies show that #MECFS is one of the most debilitating chronic illnesses. Many patients have symptoms around the clock and have lost many of the things that really matter: social network, career, leisure activities etc. Your support may mean the world.
#MEAwarenessHour

🙏🏼 ECHO/Share

ht
03:27 PM - May 01, 2024
05:53 PM - May 01, 2024
Avatar Avatar Avatar
0
16
41
MEAction NOW
A
thread 2/3
Me/CFS is a spectrum illness. Patients range from severe (unable to work, bed bound, unable to socialize, Walk, talk much, in many cases they can't eat properly either as they have developed allergies etc), moderate, mild.
In mild cases too, it's pretty bad due to PEM - Post Exertional Malaise.
05:57 PM - May 01, 2024
0
7
MEAction NOW
A
thread 3/3
Please see my pinned spout to understand PEM - which is a hallmark MECFS symptom.

I was severe for many years - I got a bit better, but most patients don't improve much. It's known to be triggered after infections in many cases and onset gradually in some.

Thank you for reading this message.

htt
06:00 PM - May 01, 2024
0
7
MEAction NOW
A
🙏🏼I am so grateful to not be bed bound anymore.

Most (70%) start after a viral or bacterial infection, some are gradual onset and some are from exposure to toxins.

Mine was first acute mercury poisoning from improper drilling of amalgam fillings and then an infection...
In response to Jonathan Meyers.
11:11 AM - May 02, 2024
2
1
Jonathan Meyers
A
In response to MEAction NOW.
Not to say it can't be all or mostly viral (we see this with "long COVID") but the role of toxic exposure is very often under-recognized because a) the effects aren't immediate and b) doctors are terrible about exploring & recognizing toxic exposure as a cause, c) symptoms seem vague to doctors.
11:57 AM - May 02, 2024
1
1
MEAction NOW
A
In response to Jonathan Meyers.
With gulfwar illness associated MECFS the toxic exposure has been understood.
Since I got mercury poisoning first, I detoxed, many terrible symptoms went away, but then got sick and had an EBV reactivation. EBV is the mystery to solve.
Mold toxins play a role as well.
Detox doesn't cure us though ☹️
12:21 PM - May 02, 2024
2
1
Jonathan Meyers
A
In response to MEAction NOW.
Glad to hear you are not bed bound and I hope you continue to improve. Some theorized that viruses are mostly to blame (book: Osler's Web) but I generally think toxic exposure (like mercury & often pesticides) creates the injury and then infections (inc. viral) have secondary impacts causing CFS.
11:53 AM - May 02, 2024
0
1

 

{{ notificationModalContent }} {{ promptModalMessage }}