#longCOVID

[myalgicencephalomyelitiscfstom]

Most Troubling Symptoms in ME/CFS and Long COVID Patients. The bar graph shows the frequency of symptoms reported by patients with ME/CFS (blue) & Long COVID (red)

From: "Patient-Reported Treatment Outcomes in ME/CFS and Long COVID"

"Most Troubling Symptoms"

From: "Patient-Reported Treatment Outcomes in ME/CFS and Long COVID"

[chronicillnesshumor]

[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

[thatonebirdwrites]

*KNOCKS ON WOOD*

I just got on disability. It is literally saving my life as it was backdated far enough so that I can go on Medicare next month. The backpay I used for an accessible bathroom. It pays my housing, utilities, healthcare bills, pet costs, and food/amenities. Without it I'm kind of fucked and won't be able to afford the meds I need. I fear the worst. But then, it's not like I haven't faced off with Death and Pain before. Those two play a long game with me, and so far I'm winning. But why do I fear the worst?

Project 2025's changes are fairly lethal and damaging to the survival of most marginalized populations, and especially disabled people. Trumpocalypse filled his advisors with Project 2025 assholes. If not Project 2025, they'll try to destroy as much of the government's social programs to harm the most vulnerable people because they're cruel. They tried that last time and judges stopped them, but they packed the courts last time. So we'll see who is left to act as obstructions. Seems they're starting with a major spectacle of ICE raids. WEird TikTok shenanigans. And stopping all NIH grant funding. This means the research on my chronic illnesses no longer has funding. Whether they can continue any current research is unknown. Whether I'll ever see treatments or cures in my lifetime is unknown. Whether research on my chronic illness will continue or whether Trumpocalypse decides it should be cut is unknown. The treatment I have currently is not great but it's keeping me alive. I had high hopes on the research finding better treatments, and maybe even getting in on a LongCovid study. That hope is dashed as Trumpocalypse mentioned wanting to cease/defund research on infectious diseases (including Covid and LongCovid and Sars and bird flu). We already don't have a pandemic response team because Biden failed to rebuild that. Instead, he doubled down on Trumpocalypse-like policies of denial and obfuscation and defunding. Friends died because of these shitty policies. And now, just as disabled folks predicted, Trumpocalypse is tearing down what they can to cause the most harm. This is a Death Administration, who are okay with us dying as long as billionaires profit. it'll be a miracle if I survive these four years. But then I've survived: Falling off a 500 foot bluff, drowning in Gulf of Mexico, SA, death threats, knocked unconscious due to falling face-first into concrete, transphobic attack, lost in the wilderness for a day with no water, hospitalized due to suicide attempt, hospitalized due to temporary paralyzation of right side... Death and I got this deal, you see. We play tag. I've been winning so far, but I'm not sure how much longer that'll last. You see, Death sneaked in a cheat -- LongCovid and my other nasty chronic illnesses -- so we'll see who wins this next few rounds. Since I need to finish my fics, I'm determined to win. Got a few tricks up my sleeve.

[gesundheit-politik]

Gilt natürlich auch für PostVACC und ME UND MECFS ohne Corona 👍

[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

[oculiauris]

ME/CFS & Long/Post Covid: Warum richtige Diagnosen so wichtig sind

ME/CFS (Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom) ist eine schwere neurologische Multisystemerkrankung – keine psychische Krankheit. Trotzdem wird sie oft falsch eingeordnet, genau wie Long/Post Covid. Das führt zu Behandlungen mit Psychotherapie oder Psychopharmaka, die die Lage der Betroffenen oft verschlechtern.

Was viele nicht wissen:

Long Covid/Post Covid können virale Auslöser wie z. B. auch EBV und ähnliche Viruserkrankungen für ME/CFS sein. Diese Zustände werden aber oft verwechselt oder nicht ernst genug genommen.

Das Ergebnis?

Fehldiagnosen und falsche Therapien, die die Gesundheit der Betroffenen schwerwiegend verschlechtern.

Dabei gibt es klare wissenschaftliche Nachweise:

Tests wie die 2-Tages-Spiroergometrie zeigen, dass ME/CFS eine körperliche Erkrankung ist – messbar und real.

Es ist dringend nötig, ME/CFS und Long/Post Covid ernst zu nehmen, nicht zu verwechseln und besser zu behandeln. Jede Fehldiagnose/falsche Therapie bedeutet weiteres Leid für die Betroffenen.

🚨Teile bitte diesen Beitrag, um aufzuklären und mehr Bewusstsein zu schaffen!🚨

©️®️CWG, 29.01.2025

#LongCovid #mecfs#postvacc #PostCovid #Impfung #oculiauris #cwg64d #mehilfe #mecfsNORDHESSEN #nichtgenesenkids #nichtgenesen #liegenddemo #millionsmissinggermany #dgmecfs

[iammadelinepod]

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

https://gofund.me/cff39173

[long-covid-protocol]

An Orthomolecular Protocol for Long COVID

Download full research paper in pdf format >here<

[myalgicencephalomyelitiscfstom]

[chronicillnesshumor]

[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.

[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

[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.