augieray, to random
@augieray@mastodon.social avatar

vaccines work to reduce risks. STUDY:

"Compared to unvaccinated cases, vaccinated cases had a similar or lower risk of all PCC categories except mental health disorders. Pre-infection vaccination was associated with reduced risk of several PCC outcomes and hence may decrease the long-term consequences of COVID-19."

https://www.nature.com/articles/s41467-024-48022-9

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Approximately 400 people protested on Saturday 11 may at Federal Square in Bern in Switzerland for better care for ME/CFS patients. Chantal Britt, president of the Long Covid Switzerland association helped to organize the protest. She pleaded to establish centers of expertise and promote research on ME/CFS.

Google translation:
https://www-rts-ch.translate.goog/info/suisse/2024/article/manifestation-a-berne-pour-une-meilleure-prise-en-charge-du-syndrome-de-fatigue-chronique-28499381.html?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

@longcovid
@mecfs

@mecfs_de

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From Jaime Seltzer:

"#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.

https://surveys.mayoclinic.org/jfe/form/SV_2auWxMckjo7s04u

1/n

@longcovid @mecfs

#LongCovid #MEcfs #PwME #PwLC #PEM #Research #Survey

SFPublicPress, to SF
@SFPublicPress@sfba.social avatar

Who was hit hardest by -19? Possibly immigrants in unprotected essential jobs. Osbaldo Varilla-Aguilar and others still face lingering, sometimes extreme symptoms.

From our partners at El Tecolote.

https://www.sfpublicpress.org/after-months-long-coma-this-latino-immigrant-worker-is-still-fighting-mysterious-symptoms/

augieray, to random
@augieray@mastodon.social avatar

I am concerned that even the most -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 .

Keep your eyes more on the risks we face today than what we MAY face tomorrow.

justyourluck, to random
@justyourluck@masto.ai avatar

Friend: "You're the only one of my friends who hasn't gotten on a plane and traveled"

The silent part I didn't say: (so I'm the smartest friend you have...)

Also unspoken ( MAYBE BECAUSE I HAVE AND CAN'T ALWAYS BREATHE EASILY AND I CAN'T STEP OUTSIDE FOR A BREAK FROM MY MASK IF I'M ON A PLANE!)

Them: "We're getting on a cruise"

Me not silent: "Can't believe you're getting on a petri dish"

Them: "We're fine. Relax"

Relax?

Me, broken the rest of the day.

violetblue, to random
@violetblue@mastodon.social avatar

New:

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 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...

Link: https://www.patreon.com/posts/pandemic-roundup-104782141

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!

timbray, (edited ) to random
@timbray@cosocial.ca avatar

Do you know someone with significant quality-of-life problems due to Long Covid?

Boosts appreciated.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@timbray I know some online but not in person. I do have a few in person friends who have ME/CFS.

ME/CFS is often post-viral. My own case was and I'm now on long term disability. About half of Long Covid cases meet the ME/CFS diagnostic criteria.

ahimsa_pdx, to disability
@ahimsa_pdx@disabled.social avatar

From The Sick Times:

"How to make spaces more accessible during the continuing pandemic"

https://thesicktimes.org/2024/05/23/how-to-make-spaces-more-accessible-during-the-continuing-pandemic/

"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."

#CovidIsNotOver #Covid #CovidCautious #LongCovid #Disability

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

"Long COVID advocates hammer Biden over ‘minimal funding’ in budget request"

https://thehill.com/policy/healthcare/4682533-long-covid-advocates-hammer-biden-over-minimal-funding-in-budget-request/

"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."

@longcovid

CaramelizedShallots, to random
@CaramelizedShallots@ohai.social avatar

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."

https://academic.oup.com/cardiovascres/article-abstract/120/6/623/7631430?login=false

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
DenisCOVIDinfoguy, to auscovid19
@DenisCOVIDinfoguy@aus.social avatar

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."

@auscovid19

Source: https://www.wsws.org/en/articles/2024/05/22/isjc-m22.html

programmablecat, to random
@programmablecat@post.lurk.org avatar

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.

DenisCOVIDinfoguy, to auscovid19
@DenisCOVIDinfoguy@aus.social avatar

Tasmania: "A senior obstetrician and gynaecologist who caught COVID during Burnie’s infamous hospital outbreak in 2020 is fighting his employer over ongoing effects, some 4 years later."

@TasmaniaHealth @GuyBarnett @auscovid19

Source: https://www.themercury.com.au/truecrimeaustralia/police-courts-tasmania/senior-burnie-doctor-fights-department-after-2020-covid-infection/news-story/d17abf7e91097ab0f2d00bc80bde1718

The doctor, who has not been identified, is pursuing the Department of Health for compensation, claiming he has never been able to return to full practice after first developing long Covid, and then a secondary injury of “distress and anxiety”. According to a newly-published Tasmanian Civil and Administrative Tribunal decision, the doctor was diagnosed with contracting Covid at his workplace – the North West Regional Hospital – on April 13, 2020. The media reported widely at the time that the hospital, and its neighbouring private hospital, were closed down due a Covid outbreak believed to have arisen from passengers on the Ruby Princess cruise ship. The hospitals underwent a deep clean and were quarantined for about a month. However the obstetrician, who took two months off work when he was initially infected, developed long Covid with “ongoing symptoms”. Due to those long Covid effects, as the tribunal noted in his management plan, the obstetrician lost his accreditation to perform certain surgical procedures. Late last year, he met with the hospital’s executive director of medical services, Elizabeth Deards, in a bid to have these credentials reinstated – but was told he’d need to undergo a neurocognitive assessment first. During her meeting with the obstetrician and his wife in 2023, Dr Deards said he appeared agitated, had obvious hearing difficulties, was easily distracted, and that his “narrative was disorganised, disjointed and, at times, abstract or bizarre”.

augieray, to random
@augieray@mastodon.social avatar

A policy analysis finds that the US CDC:

Downplays the serious impacts and aerosol transmission risks of #COVID19,

Has aligned public guidance with commercial and political interests over scientific evidence, and

Focuses on individual choice rather than emphasizing prevention and equity.
(1/2)

augieray,
@augieray@mastodon.social avatar

"Because emerging variants can already evade existing vaccines and treatments and #LongCOVID can be disabling and lacks definitive treatment, multifaceted, sustainable approaches to the #COVID19 pandemic are essential to protect people, the economy, and future generations."

https://www.ajpmfocus.org/article/S2773-0654(24)00026-9/fulltext#%20

augieray, to random
@augieray@mastodon.social avatar

“The greatest wealth is health,”

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.

https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm

ahimsa_pdx, to books
@ahimsa_pdx@disabled.social avatar

"Ten new books about Long Covid, chronic illness, and disability"

https://thesicktimes.org/2024/05/21/ten-new-books-about-long-covid-chronic-illness-and-disability/

"Here are ten recently published books on Long Covid, Myalgic Encephalomyelitis (ME), chronic illness, and disability."

Segebodo, to mecfs German
@Segebodo@chaos.social avatar

Die Rede-Beiträge von Prof. Gerner und Christian B. sind unglaublich ergreifend.

Welt-ME/CFS-Tag: Großkundgebung und in Freiburg
https://www.youtube.com/watch?v=3iX6pLQtvPk

why_not, to random German
@why_not@mastodon.social avatar


Long-Covid: Neue Anlaufstellen für Erkrankte in Niedersachsen!
Das Angebot richtet sich an Patienten:innen

  • mit Long-Covid-Erkrankung (Verdacht auf oder bereits gesichert)
  • mit Long-Covid-Erkrankung ähnlicher Symptomatik infolge einer anderen Infektion (post-akut)
  • mit Long-Covid-ähnlichen Symptomen nach einer SARS-CoV-2-Schutzimpfung (Post-Vac)
reederm, to ai
@reederm@qoto.org avatar

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
ThunderHoneySnow, to Podcast
@ThunderHoneySnow@mas.to avatar

Svetlana Blitshteyn: On the Front Line With Long Covid and POTS

A pioneer in dysautonomia with pearls on approaching patients with Long Covid and Postural Orthostatic Tachycardia Syndrome (POTS)

Podcast with transcript!!

https://erictopol.substack.com/p/svetlana-blitshteyn-on-the-front?r=ufv69&utm_campaign=post&utm_medium=web&triedRedirect=true

brianvastag, to Medicine
@brianvastag@sciencemastodon.com avatar

Informative interview with Svetlana Blitshteyn, a pioneering MD in treating (autonomic dysfunction), which has exploded with by @erictopol

https://erictopol.substack.com/p/svetlana-blitshteyn-on-the-front

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Upcoming BBC Radio 4 programme:

" : Mind Over Matter?"
https://www.bbc.co.uk/programmes/m001zg5q
20:00 May 21 UK time.

I was among a number of people from the ME community that Rachel spoke to to get background information. I'm hopeful this will be good.

A recording should be available later at the link I believe.

@longcovid @mecfs

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