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.
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.
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'.
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.💕

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More from @ravensspirit68

Jan 16,
We've lost too many in this insane '#opioid' war.
The sick & injured are spending the last years of their lives fighting, suffering, begging MDs & GOV for the medicines they need to mediate their pain.
They say taking our medicines away is to 'save' people.
No one is being saved.
Death due to #Untreatedpain or #Undertreatedpain is death by a thousand cuts.

Read 10 tweets
Dec 6, 2021
How many ways can a pain patient be screwed out of getting needed medicine?
1st-By MDs.
2nd-By pharmacies.
3rd-By insurance companies.
4th-By DEA/GOV corruption/lies.
It's atrocious that this video hasn't gone viral.
#ViralVideo #Opioids #StopPainStigma
Read 6 tweets
Sep 27, 2021
It took 8 yrs of showing up & advocating for pain pts in a myriad of ways. Of giving a megaphone to many of the 'important' ppl. It took a while, but I learned from some of the best.
@StefanKertesz @maiasz @OldHeadFighta @speakingabtpain @funchefchick @headdock @BethDarnall
Maybe these people's stories will matter somehow down the line.
Thank you @GeneW22614687 for highlighting the heinous results of the 'opioid crisis' response. Thanks to Dr. Kline for his sacrifices for the pain community. 💔
Read 24 tweets
Sep 26, 2021
It's not by 'accident' that some of us are left out of the conversation, left off the 'lists' of the elite. Our voices relgated to the echo chamber; hundreds who have been fighting for JUSTICE for pain pts since the beginning, while fighting for our very lives. 😔 Image
2-I see based on most of the names that either you're all about addiction with a nod to CPPs, or a CPP who toes the 'moderate' opioid line...😔
People wonder why I'm angry? Why I've reached the end? Really?!
Fighting since before many were even aware of what was happening, while watching the 'opioid moderates' gain more and more traction, more and more CPP support.
Lauding those who support the chains around our necks. Image
Read 5 tweets
Sep 21, 2021
Almost three years ago, this was sent.
Among many more I'll include in this thread, along with form letter responses.
Our Representatives KNOW what is happening to us.
They have known all along.
2-Written Dec, 2018...😔
3- 2018 Regulations comment submission...
Read 9 tweets
Sep 21, 2021
Thread-1- Our President, today in his speech, cited specifically upholding Article 5.
The Universal Declaration of Human Rights.
How many of these basic HUMAN RIGHTS are people in the pain community being denied at this very moment...?
2-Article 5 states:
"No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment."

Ask any person being denied adequate pain treatment about the torture they endure day in and day out, every minute of the day and night.

@HRW confirmed it.
3-We can't uphold basic tennants of HUMAN RIGHTS in the U.S.
How can we preach to the world about what should be done in other countries?
How can we 'lead by example' on a world stage if we demonstrate a lack of concern for the most vulerable of our own?…
Read 5 tweets

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