"Health-care experts and medical studies have found that racist myths about Black people … coupled with physicians’ biases, mean Black patients are more likely to be seen as drug-seeking and described negatively in electronic medical records."
“Who gets diagnosed with Long Covid, it’s socially and economically skewed”
A thread for twelve #MECFS, #LongCovid and related research papers from w/c 20th May 2024.
Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.
Not everybody becomes chronically ill from a disabling pathogen.
Live till you die is the goal, not suffer till you die.
You may not care if #Covid kills you, but will you care if you are so ill from #LongCovid, making food to survive takes every ounce of your energy for that day? Will you care then?
Because that's what way too many people are living right now.
Do you have somebody lined up who will take care of you indefinitely?
I am concerned that even the most #COVID19-cautious experts are losing their focus. Everything from them is becoming H5N1 all the time. They're moving on.
TWO AMERICANS have bird flu. It does NOT transmit human-to-human. This could change, but that isn't today's risk.
10 MILLION Americans will get another COVID infection this month--during our "low" point--and 1 million or more of them will develop #LongCovid.
Keep your eyes more on the risks we face today than what we MAY face tomorrow.
"#MEAction’s narrative activity study with Mayo Clinic opens today! We’re looking for people with ME/CFS or Long COVID with PEM to share their experiences.
The survey will be open from 5/24/2024 to 6/23/2024."
Long survey (estimate says 20-90 minutes?) but you can do it in sections and come back.
Who was hit hardest by #covid-19? Possibly immigrants in unprotected essential jobs. Osbaldo Varilla-Aguilar and others still face lingering, sometimes extreme symptoms. #sf#longcovid
CDC: infections "likely" growing in 13 states (seems like they'd be the ones who could find out for sure!), global wave heats up, UK parents of #longcovid kids accused of lying, snakes force Wales vax centre closure, China warns citizens about New Zealand surge, a peek at my next book, and more...
Also, a harrowing list of Aotearoa school covid in the past week; UK, Australia, Singapore and many other countries are getting hammered by a new variant. Ugh!
"According to a Centers for Disease Control (CDC) report from September of last year, around 18 million adults reported dealing with long COVID as of 2022."
"A blueprint for radical inclusion and living a full, safer life within the context of Covid-19 exists.
Many mutual aid groups and initiatives advocating for clean air and continued Covid-19 safety are emerging all over the world using technology and layers of protection to help mitigate the spread of viruses."
Increase in risk in cardiovascular events now up to 3 years after covid infection. I guess I won't be stopping the nattokinase any time soon.
From Ruth Ann Crystal, MD:
"Three years after COVID infection, adults had an increased risk of all major adverse cardiovascular and cerebrovascular events including heart attack, stroke, heart failure, atrial fibrillation and myopericarditis with an odds ratio of 1.73."
Chinese study finds association between viral persistence and Long COVID.
"Overall, the results provide significant new evidence that viral persistence is associated with Long COVID and that the quantity of virus remaining in tissues is associated with the risk of developing Long COVID."
i think the hardest thing about becoming inflicted with a debilitating chronic illness in your 30’s is having to reset your understanding of your own body, your capacity, your energy, and learning to be even more understanding, forgiving, and kind to yourself
and giving yourself time to grieve the person you used to be
i’m still there in that space.
i’m also still convincing myself that my dreams and goals don’t have to change. its the steps i’m taking to achieve them is what has to change.
Roman poet Virgil said this over 2,000 years ago. For some reason, it seems an awful lot of people need to be reminded of this in 2024.
The rise of Long #COVID19 we experienced after the holiday surge has diminished back to 2023 levels. Still, more than 1 in 20 American adults reported symptoms of Long COVID in April. More than 1 in 25 experience activity limitations from #LongCOVID. And 1 of every 83 have significant limitations.
Does HIPAA Even Exist for Large Corporations? -- PART 2
Today I got my official reply to my HHS Office of Civil Rights complaint of 5/3/24 against CVS for violating HIPAA regulations. The minor and rather impressive miracle here is that I got a signed letter from an attorney in only 17 days with relevant regulations and interpretations attached. Good so far.
The result was that they are not going to pursue a formal complaint -- instead they are going to "resolve this matter informally through the provision of technical assistance to CVS."
HHS OCR points out that "a covered entity must maintain reasonable and appropriate administrative, technical, and physical safeguards to prevent intentional or unintentional use or disclosure of PHI in violation of the Privacy Rule and to limit its incidental use and disclosure pursuant to otherwise permitted or required use or disclosure.... Further, under the Security Rule, with certain exceptions, the use of encryption is addressable; i.e., not mandatory." [red emphasis mine]
HHS further states under Reasonable Safeguards that "It is not expected that a covered entity’s safeguards guarantee the privacy of protected health information from any and all potential risks. Reasonable safeguards will vary from covered entity to covered entity depending on factors, such as the size of the covered entity and the nature of its business."
If HHS OCR actually in fact offers this technical assistance in a meaningful way, that WOULD satisfy my complaint -- not that anyone is asking me. This was almost certainly a stupid screw-up by someone in CVS Info Tech programming the canned computer "after visit summary" process to send out way too much information in unencrypted format to people who received a COVID booster at a CVS. If CVS STOPS doing this, I'm good.
To recap -- I received an after-visit summary not only listing what COVID booster med I received, but also my DOB, home address, and all the answers to my screening questionnaire including my answers to whether or not I have ever had a seizure, a bleeding disorder, am currently pregnant, am immunocompromised (including from cancer), have a history of myocarditis, and many other questions.
I will waste my time writing HHS OCR back to thank them and to remind them that to the best of my knowledge I never signed a release for disclosure (which apparently has no legal bearing here?), and that in this new age of AI every major tech company is incorporating AI into EVERYTHING. If I had a Gmail account, Google would have all my medical information from this CVS after visit summary email and likely would be utilizing AI to monetize it in some way.
I suppose the good news here for small psychotherapy practices is that if this is close to acceptable practice for even a giant company like CVS, then maybe we have little to worry about when it comes to client privacy. Heck -- why not just email client PHI to them without getting releases first? Why have encrypted client portals for communication?
-- Michael
**Does HIPAA Even Exist for Large Corporations? -- PART 1**
I don't care if anyone knows I just got a COVID vaccine. Most people don't care.
However, CVS Pharmacy just sent me an after-visit report across unencrypted Internet to my email address.
The form included such fields as:
-- My Full Name
-- **DATE OF BIRTH!**
-- My Full Home Address
-- Medication Administered
-- Date and Time of Appointment
-- Name of Pharmacist I saw
-- Name of Doctor at CVS overseeing it all
-- Name and Address of my Primary Care Doctor
Also:
-- All the answers to my *screening questionnaire!* including my yes/no answers to multiple medical conditions such as heart problems, immunocompromise, seizures & other brain problems, and pregnancy.
So many things wrong here. This is almost enough information for identity theft (lacking only SSN). It gives away LOTS of my medical information. If I had a Gmail email address, Google would now have all this information. What if I was a pregnant female in the southern USA where Attorney Generals are starting to track state of pregnancy for later prosecution if women go out-of-state for abortions or have a suspicious (to them) miscarriage?
**How does CVS get away with this when smaller medical offices have to be so careful?**
Michael Reeder, LCPC
#AI #EHR #medicalnotes #progressnotes #healthcare #patientportal #HIPAA #dataprotection #infosec @infosec@a.gup.pe #doctors #hospitals #CVS #COVID #sars-cov-2 #longcovid #severecovid#covidisnotover #pharmacy #vaccine
Informative interview with Svetlana Blitshteyn, a pioneering MD in treating #dysautonomia (autonomic dysfunction), which has exploded with #LongCovid by @erictopol