tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

BBC: course is 'exploiting people', says ex-GB rower

Former Team GB rower Oonagh Cousins was offered a free course of the contested
alternative treatment "Lightning Process" (LP) for her long Covid. She says: "They were trying to suggest that I could think my way out of the symptoms, basically". The BBC has secret recordings from an LP-course confirming patients are told they can recover by changing thoughts, language and actions.

@longcovid @mecfs

1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Responding to a BBC programme, Dr Edzard Ernst highlights data showing many are harmed by the Lighting Process and the lack of evidence for claims made.

He concludes: "Does anyone think that LP or its promoters are remotely serious?"

https://edzardernst.com/2024/05/almost-anyone-can-recover-from-long-covid-just-pay-a-lot-of-money-for-the-lightning-process-no-please-dont-i-was-joking/

@longcovid

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

"In communities of color, long-covid patients are tired of being sick and neglected"

Gift link = https://wapo.st/3wSGcYO

"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”

@longcovid @mecfs
#USpol #LongCovid #MEcfs #HealthCare

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New from an Italian team of authors:

Does PI-ME/CFS* recall #postCOVID (#PASC) syndrome?

Free full text:
https://www.sciencedirect.com/science/article/pii/S0168170224000868

*post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

#MEcfs #CFS #PwME #LongCovid @mecfs

18+ Trekhausen, to random
@Trekhausen@todon.eu avatar

This has been a challenging start to the year. I have finally fully left the little remote/home based work I did because of my Long-Covid and ill health after wrongly 'pushing through' in a state of constant PEM - just varying in intensity - relying on adrenaline surges, my partner caring for me, being pretty much housebound and making myself worse and worse. I regret not stopping sooner. I regret how much extra damage I have done. Though, I understand there was a interplay of structural and agency shaping my choices. I also know I am lucky to have had the choice to 'push through' and how many would not have been able to choose that even if they had wanted to. I have now got a lot of social security applications and appointments which, coming as no surprise, is fucking tough and challenging. The questions you have to answer, the awareness of all the ways the state tries to screw you. I am lucky to have a super supportive partner helping me with this, someone from a local charity helping and can't talk highly enough about the Benefits and Work guides!!!

Trekhausen,
@Trekhausen@todon.eu avatar

Solidarity with everyone who still wears a mask. Solidarity with everyone who has had friends and family turn their backs on them for being covid cautious. Solidarity with everyone who has Long-Covid and does all they can to make sure no-one else has to live through the daily difficulties we do. Solidarity to everyone fighting against ableism, eugenics, Social Darwinism and health supremacy. Solidarity to everyone who gets shouted at and abused for wearing a mask. Solidarity to everyone who keeps going despite the overwhelming hegemonic narrative that what we are living through is 'normal'. Solidarity to everyone sharing science and facts about how covid spreads and the dangers of covid. Solidarity with you.

DenisCOVIDinfoguy, to auscovid19
@DenisCOVIDinfoguy@aus.social avatar

Long Covid Patients Twice As Likely To Suffer From Depression & Anxiety | forbes.com

Study: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2818092?utm_source=For_The_Media&utm_medium=referral&utm_campaign=ftm_links&utm_term=042524

@auscovid19

Source: https://www.forbes.com/sites/anuradhavaranasi/2024/05/27/long-covid-patients-twice-as-likely-to-suffer-from-depression--anxiety/?sh=7b9f502d2822

“We found that depression and anxiety symptoms, sleep difficulties, cognitive difficulties, and disabling fatigue were all more prevalent in participants with current post-Covid condition than other US adults,” the authors wrote in their study published in JAMA Network Open. “More than a quarter of participants with current post-Covid condition who were experiencing psychiatric symptoms had not received treatment, and this represents an opportunity to improve access to mental health care in this population.” “People with post-Covid conditions may have more difficulty paying for counseling or therapy due to lost employment wages and greater costs of managing complications from COVID-19, or they may experience challenges obtaining health plan authorization for these supports,” the authors added. “With support from the US Department of Health and Human Services, healthcare systems are working to develop care pathways specific to post-Covid conditions. These pathways can integrate mental health services by, for example, incorporating routine mental health screening in follow-up for individuals recovering from COVID-19 and including mental health professionals in multidisciplinary post-Covid clinics.”
“When developing and delivering treatment programs, clinicians should be cognizant that people with PCC with or without psychiatric symptoms may be apprehensive about accessing care. These individuals have described experiencing stigma and medical gaslighting from clinicians, sometimes being told that their physical symptoms are psychosomatic,” the authors highlighted. The World Health Organization (WHO) defines long Covid or post-Covid conditions as persistent symptoms that occur for more than three months after surviving a Covid-19 infection. In a 2021 study published in the Journal of Neurology, Neurosurgery, and Psychiatry, researchers found that 26.4% of patients experienced depression and anxiety after a Covid-19 infection. Another 2021 study reported that 45% of its study participants who had Covid-19 were depressed.

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

A thread for twelve , 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.

1/13

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
BertoldScharf, to random German
@BertoldScharf@social.tchncs.de avatar

Kennt jemand einen Arzt/eine Ärztin in Hamburg, der sich mit auskennt? (Frag für eine Freundin, gerne RT)

justyourluck, to random
@justyourluck@masto.ai avatar

Everybody dies.

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 kills you, but will you care if you are so ill from , 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?

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

Out now, our latest News in Brief post covers , , and related news, advocacy and research from w/c 20th May.

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

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-534285/

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

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.

Tinu, (edited ) to random
@Tinu@mastodon.social avatar

Good day to you, fellow comrades in the resistance to fascism.

I come to you once more, to ask for your assistance

in defraying the costs of beating Leukemia with a monthly infusion

of baby unicorn tears.

Here's some photos of the fun times I had at chemo. I can accept your generous help via the links below.

https://Patreon.com/Tinu

https://account.venmo.com/u/TinuWrites

https://cash.app/$TinuWrites

/ @mutualaid

Tinu, (edited )
@Tinu@mastodon.social avatar

And to think I have to thank for bringing back the cancer I beat in 2016.

That. can bring back or cause cancer is in scholarly journals now.

But when I shared that the hospital oncologists said that is what happened, I was called every name.

Fun times.


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.

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:

"’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

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/

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
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!

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

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."

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