News about Long Covid including its relationship to ME/CFS 2020 to 2021

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rvallee said:
Long COVID in the Faroe Islands - a longitudinal study among non-hospitalized patients

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaa1792/6012625





One trend I've noticed is that initially the word was 2 weeks. Then in the early days of Long Covid it was up to 3 months, then 3-6 months. Now I've seen recently people being told by physicians that it may take 12-18 months. This is a terrible way to go about things, just kicking the can down the calendar, leaving people to fend for themselves in the hope that it will just magically go away. Reckless and irresponsible.


Some highlights:

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this is the same as my gp 30 yrs ago started of with fortnightly sicknotes then after 6months it became monthly sicknotes after 18 months he stopped mentioning improvement full stop . on the bright side he had no trouble whatsoever in giving me the M E diagnosis . plus a decade of trying to get my pain levels under some control .of course if he had bothered to warn me about over exertion my life at that time might of been more managable.
 
rvallee said:
Letter to: Long covid: doctors must assess and investigate patients properly

https://www.bmj.com/content/371/bmj...8LGjXFxWozyzZ3c8QpV3FQrXLUnmjL6s3G2cTAa8pmk_s
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This bit jumped out at me:

It saddens us to hear such low expectations from general practice and secondary care. This is a new disease, and we are surprised about the lack of professional curiosity to explain new and sometimes seemingly odd symptoms.
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Unlike those doctors, I'm not surprised in the slightest.


ETA: If their symptoms continue to linger, they'll soon experience more than just "a lack of professional curiosity". They'll get to experience the eye rolling and hostility usually reserved for us lesser mortals, not to mention the "waving away", "trivialising" and "mocking" of their symptoms.
 
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Pre-print: The Kids Are Not Alright: A Preliminary Report of Post-COVID Syndrome in University Students
Background Post-COVID syndrome is increasingly recognized by the medical community but has not been studied exclusively in young adults. This preliminary report investigates the prevalence and features of protracted symptoms in non-hospitalized university students who experienced mild-to-moderate acute illness.

Methods 148 students completed an online study to earn research credit for class. Data from COVID-19 positive participants with symptoms ≥28 days (N=22) were compared to those who fully recovered (N=21) and those not diagnosed with COVID-19 (N=58).

Results 51% of participants who contracted COVID-19 (N=43) experienced symptoms ≥28 days and were classified as having post-COVID syndrome; all but one (96%) were female. During acute illness the post-COVID group, compared to those who fully recovered, experienced significantly more chest pain (64% vs 14%; P=.002), fatigue (86% vs 48%; P=.009), fever (82% vs 48%; P=.02), olfactory impairment (82% vs 52%; P=.04), headaches (32% vs 5%; P<.05), and diarrhea (32% vs 5%; P<.05). Compared to those not diagnosed with COVID-19, the post-COVID syndrome group more frequently experienced exercise intolerance (43% vs. 0%; P<.001), dyspnea (43% vs. 0%; P<.001), chest pain (31% vs 7%; P=.002), olfactory impairment (19% vs 0%; P=.004), lymphadenopathy (19% vs 0%; P=.004), gustatory impairment (14% vs 0%; P=.02), and appetite loss (36% vs 14%; P=.02).

Interpretation Our results contradict the perception that this “yet to be defined” post-COVID syndrome predominantly affects middle-aged adults and suggest that exercise intolerance, dyspnea, chest pain, chemosensory impairment, lymphadenopathy, rhinitis, and appetite loss may differentiate post-COVID syndrome from general symptoms of pandemic, age, and academic related stress. These findings are also consistent with previous reports that females are more vulnerable to this post viral syndrome. Large-scale population-based studies are essential to discerning the magnitude and characterization of post-COVID syndrome in young adults as well as more diverse populations.
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https://www.medrxiv.org/content/10.1101/2020.11.24.20238261v2
 
I'm confused by this article.

Is this the doctor in this article?
https://twitter.com/mindfuldrg?lang=en

"At the beginning of 2020, when COVID-19 was still only in the peripheries of our awareness, I was recovering from neurosurgery. I have a rare neurological disease, tethered cord syndrome, and in October 2019 I had been through an invasive operation to detach my spinal cord from where it had connected to the surrounding tissue. Just 10 days later, I had another surgery to repair a CSF (cerebrospinal fluid) leak".

Further down she writes:

"Simple actions like showering, brushing my teeth or making food have become monumental tasks. My Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is worse. Minimal activity increases my symptoms which makes it extremely difficult to get back to continuing my neurosurgery recovery—using my recumbent bike, for example. I am beyond frustrated by this".
 
@Jonathan Edwards

No, she STILL has ME based on what she wrote: ""Simple actions like showering, brushing my teeth or making food have become monumental tasks. My Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is worse. Minimal activity increases my symptoms which makes it extremely difficult to get back to continuing my neurosurgery recovery—using my recumbent bike, for example. I am beyond frustrated by this".

The way I'm reading this is that long-Covid has made her "ME" worse, so it seems that surgery did not heal her "ME". It's still confusing.
 
Andy said:
Pre-print: The Kids Are Not Alright: A Preliminary Report of Post-COVID Syndrome in University Students

https://www.medrxiv.org/content/10.1101/2020.11.24.20238261v2
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Our results contradict the perception that this “yet to be defined” post-COVID syndrome
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Not so much a perception as an assumption that was turned into a strong assertion repeated ad nauseam. The perception is entirely in the mind of people who trust the assumption-based assertion coming from medical professionals who said those things, mere opinions, as if they were validated facts.

Maybe medicine should hold off making definitive assertions about things like that? And stop making assumptions and holding them as true no matter what the evidence shows? Sounds very reasonable to me. And yet here we are. Because it usually does when it comes to disease and underlying physiology. Somehow illness is a complete free-for-all of gut feeling. Double standards are rarely so flagrant.
 
I’m 33 Years Old. I Got COVID-19 Eight Months Ago. I’m Still Sick.

https://www.buzzfeednews.com/articl...ronavirus-longterm-symptoms-future-of-vaccine

I’m 33 years old. Before I got sick with COVID-19 in April, I was traveling nonstop for my work as a campaign reporter, with 12- to 14-hour days on my feet, sometimes working 10 or more days in a row. In between all that, I’d fit in hot yoga classes and jogs every couple of days.

The best way I can describe how I am now, at the end of this strange, horrible year, is that I wake up most days feeling like I drank a six-pack of beer the night before. Washing the dishes, doing my laundry, or walking a few blocks leaves me in need of a sit-down. It’s a sort of gritty feeling in my body, a woolly feeling in my brain. My breathing is up and down; when I'm tired, I forget words midsentence. I need at least 10 hours of sleep most nights. And if I push too hard, it’s not just laborious — it’s actually painful, from my lungs to my head to the stinging in my eyes.
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Month to month I can see that I’m very slowly getting some energy back — but there’s the constant possibility, which no one has been able to really rule out, that one of these setbacks will be so bad that I actually do end up in the hospital, or worse.

One day early on, I tried to do a YouTube yoga session “for when you’re sick” and ended up a sobbing mess on the mat instead because I didn’t have the energy to get past about three minutes.

I kept pushing myself to get back to work, as though by the force of sheer willpower I could stop being sick.
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In the absence of real medical guidance, we’re realizing that we need to learn how to live with this illness. Educating ourselves in these support groups is exhausting but necessary — something we’re learning from people who have for far longer dealt with other “invisible” illnesses like chronic fatigue and lupus. They’re all too familiar with what we’re dealing with now: when the medical profession doesn’t seem to have many answers for you, and the people around you find it hard to understand or even believe that you’re struggling.
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rvallee said:
One trend I've noticed is that initially the word was 2 weeks. Then in the early days of Long Covid it was up to 3 months, then 3-6 months. Now I've seen recently people being told by physicians that it may take 12-18 months. This is a terrible way to go about things, just kicking the can down the calendar, leaving people to fend for themselves in the hope that it will just magically go away. Reckless and irresponsible.


Some highlights:

Click to expand...


This was how my illness was treated. Every time I visited a dr I was given a new time frame for recovery and therefor nothing should be done about my suffering.
 
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