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 ,

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 can be disabling and lacks definitive treatment, multifaceted, sustainable approaches to the 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 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 . 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

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

C19LAP, to random
@C19LAP@mastodon.world avatar

Bishof said, “As a patient advocate, I urge insurance providers to reassess their policies and embrace a more inclusive approach that recognizes the ongoing challenges faced by Long Covid patients. It’s imperative that we support and protect these individuals, not isolate them further.”

https://clearhealthcosts.com/blog/2024/05/getting-a-new-life-insurance-policy-will-longcovid-be-a

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From

": Celebrating An Impactful Campaign"

https://www.meaction.net/2024/05/17/teachmetreatme-celebrating-an-impactful-campaign/

"We are THRILLED to share the rolling successes of our 'Teach ME Treat ME' campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months!"

Article has lots more details along with reports of other Millions Missing events! 😁

1/2

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar
ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for week starting May 13:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-533010/

This two part news summary includes articles, videos, research, advocacy, coming events, and more

@mecfs @longcovid

AndrewGiffordphotography, to mecfs
@AndrewGiffordphotography@mastodon.social avatar

The mighty mitochondria - from my photo project about ME/CFS

https://glass.photo/andrewgifford/6lp8OC9jPWMsaPWxnvRKfm

ALT: colour photo of raw egg on tin foil with lots of liquid filled capsules amongst the egg white, representing mitochondria in the cell

s4me, to mecfs
@s4me@med-mastodon.com avatar

A thread for eleven , and related research papers from w/c 13th 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.

1/12

yoboseiyo, to novid
@yoboseiyo@retro.pizza avatar

hey! johns hopkins is doing a survey about long covid! but they're having trouble finding CONTROLS, so if you've managed to avoid covid ( ) they wanna hear from you!

https://covid-long.com/

i took it! took about 30mins, and they ask about your vaccinations, so you might wanna have your card handy because they wanna know how many, what brand, and when. go help them out!

CaramelizedShallots, to random
@CaramelizedShallots@ohai.social avatar

>>MRI Abnormalities: 48.4% of pediatric patients with post-COVID-19 neurological symptoms showed MRI abnormalities.

Types of Lesions: Predominantly encephalitis/encephalopathy (73.3%)...

Vascular Abnormalities: 80% of patients with MRI abnormalities exhibited vascular issues, mainly affecting the middle cerebral arteries.

Neurological Manifestations: The spectrum of symptoms ranged from seizures to Alice in Wonderland syndrome.<<

https://tactnowinfo.substack.com/p/mri-study-reveals-high-incidence

grimalkina, to random
@grimalkina@mastodon.social avatar

I have enough followers on here (👋 💞) that I think it is worth a little thread on how I relate to social media and online conversations & try to cultivate community

  1. I am a person, not an object. I have personal thoughts, feelings, experiences, a family, & a life. Angry interactions from strangers & esp those interested in exploiting me as An Example Of Some Battle of Yours are dehumanizing & will get blocked (e.g.: "this is why those Ex Twitter people should be banned by default")
grimalkina,
@grimalkina@mastodon.social avatar
  1. Not everything I share is for everyone -- how could it be? Sometimes I make silly jokes, or sideways references; sometimes I might understand a word differently than you do or make a typo or don't finish a clause. I also have , which means managing my stress, fatigue, and exposure to threat is quite LITERALLY life and death for me.

I block anyone who reads into this as moral failing. I don't tolerate "you didn't mention x, therefore you must be evil and hate x" on social media.

AndrewGiffordphotography, to mecfs
@AndrewGiffordphotography@mastodon.social avatar

Living vicariously - from my photo project ME/CFS

https://glass.photo/andrewgifford/1lno0Uk0hXjqx1RPt8d3w4

ALT: colour photo of large stack of grey and blue blu ray discs


s4me, to mecfs
@s4me@med-mastodon.com avatar

Our latest News in Brief post gives headlines and links to further reading for , and related news and research from w/c 13th May.

Topics covered this week:
News, advocacy and articles
Research news
Crowdfunding
Coming events
& Research

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-533010/

tomkindlon, to coronavirus
@tomkindlon@disabled.social avatar

(pay wall)
"Parents of children with claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and... court cases and the threat of the child’s removal from the home."

https://inews.co.uk/news/parents-children-long-covid-accused-making-up-3034629

@longcovid

@covid19
@novid

justyourluck, to random
@justyourluck@masto.ai avatar

ONE BILLION

1,000,000,000

"By 2033, a billion people are expected to suffer from Long Covid - most of them in the economically active age groups."

https://www.manager-magazin.de/lifestyle/long-covid-konferenz-wir-muessen-uns-endlich-eingestehen-wie-gewaltig-dieses-problem-ist-a-4389644b-1795-4acf-bccf-759d6dce1982

The is STILL going on‼️

sucks more than you can imagine‼️

or as the WHO now says it spreads ‼️

with or better & Stay Safe‼️ 😷🫶

oldperl, to mecfs German
@oldperl@mastodon.online avatar

👇☝️ @longcovid

schaumburgernachrichten@schaumburg.social - Long Covid: Nehmen wir Betroffene nicht ernst genug? - Viele von Long Covid Betroffene fühlen sich nicht ernst genommen. Georg Schomerus forscht zur Stigmatisierung und sagt: Die Krankheit wird in der Tat missverstanden. Was es bedeuten kann, wenn selbst Ärztinnen und Ärzte die Symptome fehl­interpretieren. https://www.sn-online.de/gesundheit/long-covid-nehmen-wir-betroffene-nicht-ernst-genug-P3WNZKXRLNE4JOT6OVANSQ3M5I.html

themaskerscomic, to random
@themaskerscomic@forall.social avatar

I think it is really important we speak out against this bill as it could be copy-catted in other states, and its just messed up, so I started an email campaign: TIME-SENSITIVE!: Join the email campaign to stop HB 237 from passing in NC House of Representatives! If passed, this bill will make it illegal to wear a mask in public even for medical reasons, more info at https://the-maskers-comic.yolasite.com/stophb237 We need to send these emails out ASAP!

#hb237 #CovidIsNotOver #MaskUp #covid #LongCOVID #COVIDisAirborne

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