Thread by @ravensspirit68

Covid #LongHaulers please take note.
Those in the #MEcfs community has been down the Post Viral Sydrome road for decades now.
The CDC is fully aware of our plight, but has done little in the way of research or help.
#ThisNeedsToChange
Thread...

2-It begins, usually, with an infection.
For the majority of #MyalgicEncephalomyelitis pts it was the Epstein Barr Virus. But there are other infections that lead to #MEcfs as well. In almost every case the person knows that from that point, they were never the same again.

3-For some the progression is slow, fits & starts of decline.
Many continue with some sense of 'normalcy' in life for years. For others the onset of their post viral syndrome happens immediately and functional decline deterioration of all body systems is rapid.
#LongCovid #MEcfs

4-Many will first notice issues with digestion, metabolism, profound fatigue with minimal exertion.
What #MEcfs patients know all too well is the standard prescription of being told to 'exercise' your way back to health does only more harm.

#LongCovid #MyalgicEncephalomyelitis

5-Arrythmia and drops in blood pressure when going from sitting to standing, (#POTS), is another issue that often surfaces, along with cognitive issues referred to as 'brain fog' by those in the #ChronicIllness community.

6-There are so many other debilitating symptoms that arise.
When seeking help, you're usually told that your labs look pretty good.
The unspoken insinuation that the MD feels your symptoms are likely all in your head.
Many are referred to a psychologist at this point.
#LongCovid

7-The only saving grace is that w/#Covid19 & #LongCovid we have a more direct and obvious connection to the reality of Post Viral Syndrome. We'll also likely have a lot of medical professionals that contract it. Which may lead to funding for research and hopefully, treatment.

8-In closing, as one who has had #MyalgicEncephalomyelitis for 38 yrs, first I encourage all those with #LongCovid to LISTEN TO YOUR BODY.
While remaining as functional as possible is vital, learn when to stop. doon't 'push' too hard when your body is it's at it's limit.

9-Second-We in the #MEcfs community KNOW what you're experiencing is all too REAL.
It's important to stand up for yourself when confronted by those who will insist you're 'fine' or tell you your lived experience is 'all in your head'.
#LongCovid

10-Third-That being said, it is NORMAL to feel frustrated, depressed, angry, and even sad faced with the loss of who you once were.
There is no shame in any of it, and no shame in expressing those feelings or asking for help.
The #MEcfs community's here, to offer support.💕