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
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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.
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.💕
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Thread-There's probably more to unpack here than X or my current flare will allow me to elaborate on.
From deflection to gaslighting and than on to dismissal of anything we #chronicpatients or even professionals say.
#ChronicPain #PainCareCrisis @DEAHQ federalregister.gov/documents/2024…
2-Section 306 of the Controlled Substances Act (CSA) (21 U.S.C. 826) requires the Attorney General to establish aggregate production quotas for each basic class of controlled substance in schedule I and II...
Maybe next letter writing campaign to the U.S. A.G?
#PainCareCrisis
3-DEA received 4,699 comments from people with chronic pain, patients (ADHD), pain advocacy associations, U.S. professional associations, U.S. nurses, and far more.
1-The most idiotic & insulting things those with #ChronicPain face is the implication or direct accusation that we 'just want opiates'.
The truth is, we ARE 'seeking' the meds from MDs we require for pain relief but usually ONLY AFTER trying almost everything else already.
2-When one is ill or injured they usually try the old standby's first vs before going to a doctor.
Ice, heat, OTC meds like Ibuprophen or Tylenol-Even both. Some try herbal supplements, massage, gentle exercise, diet, even acupuncture before seeking help from an MD.
#ChronicPain
3-Those w/#chronicillness have usually done their research & avoid medical offices/ER like the plague if at all possible.
From cost to gaslighting, we'd rather deal with our issues at home. But facts are, we require MDs help as THEY are the only ones who can RX meds we need.
1-Objective: SAVE LIVES.
Recently I said a #SafeSupply is the pinnacle of saving lives but I realized it's not; it's the FOUNDATION, upon which we build policies to actually save lives.
I'm going to refer to this moving forward as the GOLD STANDARD in reducing #DeathsOfDespair.
2-Drugs would be legalized. A safe, known potency supply of substances created by existing drug manufacturers. It would include supply for RX'd medicines as well as for OTC public, adult, sales and consumption. Similar to how alcohol is sold & consumed now. #SafeSupply
3-The BILLIONS UPON BILLIONS being funneled into the #DrugWar and the 'opioid crisis' would be put into improving efficacy and access to AFFORDABLE HEALTH CARE, including mental and dental health, while bridging gaps in regard to other #socialdeterminants of health.
1-#ChronicPain patients knew that the opioid 'guideline' re: prescribing practices was not law.
But as intended, PROP's 'guideline' shaped the Standard of Care re: #opioid prescribing practices so it might as well have been law.
Why?
Tort law.
Let's try and break it down.
2-Once PROP's ‘opioid guideline’ was published through CDC, prescribing practices started to formally change nationally and altered how doctors were to treat pain; altering the Standard of Care. This was crafted around an ‘opioids are dangerous drugs' narrative. #ChronicPain
3-The recommendations to instate a maximum morphine milligram equivalent altered things further in the practice of treating pain. It changed pain treatment recommendations for acute pain, post surgical pain control, and most of all, the way #ChronicPain was treated.
Let's break down #TheGreatOpioidLie.
1-"Over-prescribing was the cause of the opioid crisis."
First according to the Medical Board of CA, there is no legal definition of 'overprescribing'.
Second, it is a THEORY that the mandate to treat pain led to the overdose crisis
cont...
2-The Gov's own stats disprove the access theory. As access to RX meds declines we continued to see a steady increase in drug deaths.
Seems something else might have been a the heart of why we saw a rise in ODs and continue to see record numbers of PEOPLE dying. #ChornicPain
3-Could it have been the collective trauma we all experienced after 9/11, then we sent our loved ones off to war, and they were being sent home with broken bodies, then the financial collapse, outsourcing of manufacturing jobs, people losing homes, retirement, investment accts...
1-How is the #WarOnPainPatients being waged, let us count the ways...
You're probably seeing an MD because OTCs aren't working.
You're told ibuprophen works well for pain & offered an RX for ibuphropen.
You decline as you've been taking it OTC for months.
You just refused meds.
2-If you counter any aspects of #TheGreatOpioidLie, citing facts vs fiction...
It's can be charted that you're emotional-hostile-agitated.
'Drug seeking' behaviors.
*Women are often labeled hostile just for being in assertive when dealing with people in positions of power. 😔
3-If you have a #chronicillness that includes fatigue & pain syptoms and you taking an opioid...
It's the opioid making you somnolent, tired, depressed, not your illness or pain.
And this can be used as an excuse for an MD to taper or discontinue opioids or even benzos.