#longCOVID

[chronicillnesshumor]

[myalgicencephalomyelitiscfstom]

[longhaulerbear]

Imagine, for a moment, that you wake up one morning with a debilitating illness that won’t let go. Weeks and months pass, but the crushing fatigue, constant headaches, and aching muscles remain. You can’t think straight. Simply showering or doing the dishes leaves you floored for days at a time, and the unpredictable symptoms — shortness of breath, dizziness, a racing heart — ebb and flow without warning. You find your life as you knew it slipping away.

This is life with long Covid: a condition that transforms the familiar rhythms of daily life into a living nightmare and constant battle for energy and clarity. But what happens when the only hope of lessening its severity becomes an issue of equity?

We are two of the more than 400 million people worldwide who have experienced long Covid. While we are both over four years into this illness, there is still not a single FDA-approved treatment for this devastating condition. Given the slow pace of research and development, there is unlikely to be proven treatment for years — possibly decades.

For people with long Covid, finding some relief today rests in accessing promising medications that are already on the market. One of us, Charlie, received Plavix that was prescribed off-label and has since substantially improved his quality of life. He still remains mostly housebound, but the drug relieved two years of constant agony of not being able to take a normal breath. Blood thinners including Plavix have been shown to reduce long Covid symptoms, possibly because they reduce microclots and hyperactive platelets found in patients. However, many physicians are wary of prescribing them due to bleeding risks. We are not suggesting that Plavix will be right for everyone with long Covid — we share this experience as an example.

But there is a significant downside to this approach: Combing through countless resources and identifying potential treatment options requires money, educational attainment, and health insurance — as well as time, energy, and cognitive capacity, three things that are in short supply when you have long Covid. Even then, you must be able to meet with several physicians to find an informed and willing provider. If any one of these pieces is missing, people with long Covid are likely to be left without adequate care, particularly if they also face the barriers of  racial, ethnic and gender medical bias. This is yet another example of the already glaring health disparities in the U.S. The result is a health care system that continues to fail and harm the millions of people with long Covid, who must experiment on their own to manage their condition.

From personal experience, receiving an off-label drug required meeting with dozens of health care providers, including one along the way who said, “99% physicians would never prescribe it” due to concerns about its side effects. It took a total of 18 months to find a willing prescriber, and it was the only drug to alleviate the debilitating symptom of shortness of breath.

This is just one treatment among an entire portfolio of promising FDA-approved medications that we and others at the Patient Led Research Collaborative are working to collate, which includes well-known medications like low-dose naltrexone. These medications can be prescribed off-label and have provided some relief to people with long Covid. The evidence base for these treatments largely comes from the extensive literature on infection-associated chronic conditions as well as recent long Covid case studies and crowdsourced data through sources like CureID, Long COVID PharmD’s surveys, and support groups such as communities on Reddit.

Out of desperation, patients are using their limited energy to individually repeat the same web searches and reviews of the literature, then attempting to convince their physicians to prescribe treatments. Many physicians are uncomfortable prescribing off-label medications for long Covid even though one in five prescriptions in the U.S. is written for off-label use. The medical and research communities should be bringing treatment options, along with an assessment of their risks and benefits, to the patients. A national registry collecting data on current off-label drug use to treat long Covid could cost-effectively generate urgently needed safety and efficacy data.

To lessen the burden of long Covid on people with the condition, we need to get more information into the hands of physicians, while giving patients more decision-making authority. For example, there are high-quality guidelines for diagnosing and managing ME/CFS and POTS, at least one of which most people with long Covid have, yet medical gaslighting continues to run rampant and most medical schools do not educate physicians about these conditions.

Health care systems should also expand access to survey-based prescriptions for drugs that already have strong safety profiles. Multiple companies offer access to prescriptions after brief patient interactions, but they are generally not covered by insurance, are only available in some states, and do not always include sufficient information about risks or support for addressing side effects.

Further, the federal government must create pathways and incentives for drug repurposing with public health benefits.

Finally, all patients must be informed by their health care providers about treatment options and their risks and benefits, as well as adequately supported in cases where side effects occur.

Ultimately, finding cures requires many more high-quality clinical trials, and we desperately need “moonshot” funding to get us there. But in the short term there is so much more the health care system could be doing to provide meaningful care: We call upon the Department of Health and Human Services to find ways to approve, pay for, and collect and disseminate information about treatment options for long Covid and other infection-associated chronic conditions.

We all prefer making decisions based on gold-standard clinical trials, but if we do nothing while we wait for that data to be generated, people with long Covid will continue to experience debilitating symptoms, loss of income, homelessness, and death. Further, in the absence of guidance, people with long Covid will continue to self-manage their condition, investing in costly treatments and unregulated supplements.

With the support of the health care system, they would have much more comprehensive, readily available information on the risks these treatments might pose — including that certain treatments may help only a subset of people who try them. Patients have the right to make well-informed decisions about accessing promising drugs with reasonable safety profiles.

Without treatment, 400 million people worldwide could suffer indefinitely. “Do no harm” means providing access to treatments — not withholding them.

Julia Moore Vogel, Ph.D., MBA, is a long Covid patient-researcher at Scripps Research and the Patient Led Research Collaborative (PLRC). Charlie McCone is a long Covid patient advocate, is a member of the PLRC, and has served as a patient representative on the NIH RECOVER clinical trials arm.

[davidaugust]

“For the United States alone, the economic cost of long COVID is estimated to be $3 trillion over the next five years” and a projected 200 million people worldwide Long Covid in the next 10 years.

This is why wearing a mask, improving ventilation, avoiding crowds and getting fully vaccinated and boosted makes so much sense. Hopefully improvements will be made, but until then: avoiding COVID is the best way to avoid Long Covid.

Source: https://www.nature.com/articles/d41586-023-03225-w

[whatjanewore]

Long Covid: Personal Style Edit

Friday is Long Covid awareness day. I've had Long Covid for about 18 months. The biggest impact it's had on me is that I'm no longer able to work due to my main symptom of "fatigue."

You might be looking at these pictures and thinking I look like my usual self. What you can't see is that taking them is the only thing I did yesterday. I had to spend most of the day resting.

Long Covid fatigue is like when your phone has a really low battery and there's no charger, so you have to decide: What am I going to do with my 10% of energy today?

And then you realize every tiny thing that you've luckily never had to give a thought to takes energy. Like talking, listening, thinking, sitting up, putting on clothes, looking at a screen, just being out in the world around other people.

And your energy level never goes up!

After about 11 months I saw some measurable improvement: My battery level increased, and it continues to improve slowly. I can do more now than I could a year ago, but I'm still not able to work. I'm trying to be very patient, but it's hard. I miss working. I had awesome colleagues and I love working with college students.

Let me tell you about my outfits.

In the skirt picture, savvy style-watchers might notice the "deconstructed" vibe. This is because that's how I feel: deconstructed. Like I have these baby muscles that can't even lift a six-pack of Diet Coke. The spiky shoes and bracelets remind me of those images of the Covid virus itself that we used to see at the beginning of the pandemic.

The disco ball earrings are because I miss dancing and I'm hopeful I will be able to again.

Wig picture: why am I wearing math leggings, you ask? Because math is the language of science and somebody please do some more science and figure out this Long Covid thing! And thank you to those researchers who have been working on it already.

Please note: Long Covid is different for everyone, there are over 200 symptoms, and many people are much more debilitated and have been living with Long Covid far longer than I have. This is just what it has been like for me.

Special shoutout to my husband King Kaufman, who takes care of me like a boss.

[madelinenerdfighter]

The richochet article is out

Also the journalist did a tweet thread with highlights from the article if that's something that you're interested on sharing Facebook and Instagram won't let you share a news links from Canada https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19

@allthecanadianpolitics

[iammadelinepod]

QR code has links as well as in the GoFundMe to Media pieces that affirm my situation

https://gofund.me/cff39173

[the-sick-times]

We made a zine! To celebrate our first anniversary, we commissioned artist Katie Drackert to create a printable mini-magazine of our first year’s highlights, as well as top Long COVID and COVID-19 resources.

We wanted to bring The Sick Times offline and into coffee shops, art fairs, community centers, mask bloc distributions, and anywhere else our readers want to share our work. Please print it and distribute it widely!

You can download and print the zine using the file below, or read it online here.

[long-covid-protocol]

An Orthomolecular Protocol for Long COVID

Download full research paper in pdf format >here<

[ladycybercat]

I've been wanting to make a comic about fibro and cbd forever, but until I can manage that I wanted to share this important info. #covid #fibromyalgia #chronicpain #longcovid If you have questions about CBD oil I'll be happy to answer any questions. It took me a long time to find the right CBD for me. Everyone's biology is different and what works for me may not work for everyone. Don't give up, try different brands as they are often very different. Start low with dosing because CBD has a property where if you take too much for your system, it actually makes fatigue and pain worse. That's why it is NOT a one size fits all type of dosage. (which is really annoying) Good luck and I hope you feel better!

Posted using PostyBirb

[chronicillnesshumor]

[myalgicencephalomyelitiscfstom]

"Chronic fatigue" is part of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome, many cases of long Covid along with some other energy-limiting chronic illnesses / #spoonie conditions.

Its severity varies between individuals so some people can have more difficulty doing these activities than others. Also it can vary within the one individual from day to day so that some days they may be able to do a particular one of these activities and other days not.

[romythe]

The reason for the extreme fatigue associated with long covid has been discovered by Dutch scientists.

Turns out the mitochondria (energy centres) in the muscles are not working properly and muscle tissue wastes away.

I sincerely hope this will be a step towards something that can actually help people with long covid and definitely the stigma attached to it.

[october-rosehip]

Alt: a drawing of a brown haired, blue eyed elven man with multiple ear piercings, a nubbly green cloak, and a blue ribbon in his hair, in profile facing right. The colors are somewhat complex and the texture of the cream pastel paper with rough tooth shows through.

How do you colored pencil?

Personal life update, and colored pencil facts!

I’ve been struggling with my art since longcovid because I have a tremble I didn’t used to have and my grip strength is shot. Also my energy level is terrible, so I’ve been trying to find things to do that I can set down again if I find I need to go lay down RIGHT NOW. I started looking back into drawing materials instead of painting materials, and that’s when I found out...

PRISMACOLORS HAVE CHANGED MANUFACTURERS AND FORMULAS REPEATEDLY OVER THE LAST 30 YEARS. This was mind-blowing information to me, whose favorite medium used to be colored pencils, but starting in late college, I started to suck at them. Guess when the last Berol manufactured prismas left the shelves. I just never realized, and blamed myself.

Instead of trying different brands, I just painted more. But now...

Anyway this is drawn with Luminance.

[xianjaneway]

I didn't know this would be the last "normal" day of my life.

The next day, I came down with COVID.

Four months before vaccines were released to the public.

I developed Organizing Pneumonia, which required 5 months of home oxygen & steroid treatment.

The whirring, rhythmic sound of an oxygen machine gives my oldest child panic attacks to this day.

This is my youngest child (of 4). She wrapped herself up in a blanket to come see me, while I was working on some teak furniture we got from a woodworker's estate.