i would take the placebo effect if it worked....i don't think i'm susceptible to fake cures...i've tried so many alleged treatments that supposedly helped...and they didn't do anything for me...and these were allegedly proven treatments. The only thing that seemed to help was when i had a minor surgery (about 2 hours)...I felt great after...went home and did laundry even though I hadn't slept the night before..and it lasted for a while. i think it was about a year later the exhaustion started setting in again....i sometimes wonder if the anestsia allowed my brain to work right for a couple hours.
jmitw said:i would take the placebo effect if it worked....i don't think i'm susceptible to fake cures...i've tried so many alleged treatments that supposedly helped...and they didn't do anything for me...and these were allegedly proven treatments. The only thing that seemed to help was when i had a minor surgery (about 2 hours)...I felt great after...went home and did laundry even though I hadn't slept the night before..and it lasted for a while. i think it was about a year later the exhaustion started setting in again....i sometimes wonder if the anestsia allowed my brain to work right for a couple hours.
The body is amazingly complicated. You just never know what it’ll respond to, in a good way.
FDA-approved treatments that helped a number of my friends left me feeling miserable, with no improvements. In my severe years, I never knew when I crossed that invisible line of too much (minor) activity that would throw me into a relapse of days or weeks. I do remember a study done at Kessler 30 odd years ago. Some patients were thrown into severe relapses after 90 seconds on an exercise bike. The upshot was found to be a near-total of intolerance for aerobic exercise.
OTOH, a small but significant number of patients were able to tolerate some non-aerobic exercise, such as tai chi.
No matter how much proof there is, the general public is not going to grasp the real consequences of COVID morbidity. The coming swell of long COVID may have a marked effect on healthcare soon. Since we are still learning how survivors fare after recovering from the different variants, deciding how to prepare for the near future is going to involve efforts that will extend beyond the coming elections. Some long COVID advocates are already raising voices against political motives to downplay the seriousness of long COVID and return to normal for the sake of the economy (Hunt, et al., 2022). Denying its impact would also help suppress support for the rise in welfare spending needed to accommodate long COVID chronic illness and long-term disability.
Perhaps the biggest obstacle to making appropriate policy changes is going to be accepting that long COVID is a real illness. Long COVID symptoms are similar to those of postinfectious fatigue syndromes following known infectious diseases. They also are similar to those of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) (Komaroff, et al., 2021) and so long COVID patients have been subject to the kind of dismissive treatment ME/CFS sufferers have gotten to know all too well. However now, there is awareness of long COVID that didn’t grow easily for ME/CFS and other contested illnesses before social media existed (Hunt, et al., 2022). Another factor that may be even more important is the number of health professionals who are more knowledgeable about chronic illness and whose complaints are less likely to be ignored (Wall, 2021).
This pandemic presents an opportunity to work together for the benefit of people with long COVID, ME/CFS, and other illnesses with unexplained symptoms. A good thing that has come from having so many health professionals stricken with COVID is that many doctors now feel better able to understand the needs of patients with chronic conditions that have no definitively identified cause (Taylor, et al., 2021). Having a doctor that doubts your symptoms is still going to be a problem but one way to counter that is to be your own best advocate. Doing your own research is not going to be easy with all the available misleading information and also because the virus is constantly changing. Social workers and public health officials will hopefully step up because they are prepared to connect long COVID patients with valid sources of information.
Taylor, A. K., Kingstone, T., Briggs, T. A., O’Donnell, C. A., Atherton, H., Blane, D. N., & Chew, G. C. A. (2021). “Reluctant pioneer”: A qualitative study of doctors’ experiences as patients with Long COVID. Health Expectations, 24(3), 833–842.
Wall, D. (2021). The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19. AMA Journal of Ethics, 23(7), 590–595.
Komaroff, A. L., & Lipkin, W. I. (2021). Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of post-acute COVID-19 syndrome. Trends in Molecular Medicine, 27(9), 895–906.
Hunt, J., Blease, C., & Geraghty, K. J. (March 27, 2022). Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Journal of Health Psychology https://doi.org/10.1177/13591053221084494
Educational demands are putting teachers and all school staff at risk, both in physical and mental health. With already low salaries, the added strain of working in this pandemic has led to very high rates of social workers and teachers leaving their jobs (Lerner & Pollack, February 23, 2022). Relaxing masking rules in spite of a two-year history of novel variants appearing has also been a problem when those making the decisions aren’t the workers directly affected. While newer variants haven’t always caused hospitals to be saturated with serious cases, contracting even a mild case is not without potential harm weeks and months after recovery (Lieberman, April 27, 2022). Since there was a long delay in approving vaccination for school-aged children, long COVID also began to affect them, too, even though the narrative was that COVID wasn’t a problem for children (US Dept. of Ed., 2021). Long COVID can induce neurological damage (Douaud, et al., 2022) and immunological dysfunction (Phetsouphanh, et al., 2022) among other organ system harm that can last many months after recovery with some cases still persisting for more than a year.
Even before this pandemic, America was already experiencing a rising burden of neurological disorders that require long-term medical care (Feigin, et al., 2021). Based on U.S. data from Worldometer (see link in References) the U.S. may now have accumulated 4M cases of long COVID in each of the pandemic’s two years, twice the average yearly rate of strokes, TBIs and AD & other dementias combined, 2.04M (Feigin, et al., 2021). America’s healthcare system operates without universal coverage and there is already a widespread problem with medical bankruptcy. The high cost of medical care will reinforce this trend since poorer people are apt to wait to see if things improve before risking a hospital visit that could cost several thousand dollars.
Lerner, J., & Pollack, H. (2022, February 23) Social workers are the unsung heroes of the pandemic. The Washington Post. https://www.washingtonpost.com/outlook/2022/02/23/social-workers-burnout-pandemic-unappreciated/
Lieberman, M. (April 27, 2022). 1 in 5 American Educators report having long COVID symptoms. Education Week. https://www.edweek.org/leadership/1-in-5-educators-say-theyve-experienced-long-covid/2022/04
Feigin, V. L., Vos, T., Alahdab, F., Amit, A. M. L., Bärnighausen, T. W., Beghi, E., Beheshti, M., Chavan, P. P., Criqui, M. H., Desai, R., Dhamminda Dharmaratne, S., Dorsey, E. R., Wilder Eagan, A., Elgendy, I. Y., Filip, I., Giampaoli, S., Giussani, G., Hafezi-Nejad, N., Hole, M. K., Murray, C. J. L. (2021). Burden of Neurological Disorders Across the US From 1990-2017: A Global Burden of Disease Study. JAMA Neurology, 78(2), 165–176.
https://coronavirus.data.gov.uk/details/cases UK Data22M total cases – 191K deaths (with COVID on the death certificate) = 21.8 M recoveredAt least 10% of those 21.8M recovered cases had long COVID (1M per year)2.18M of 68.5M (total UK population) is 3.2% of the population
https://www.worldometers.info/coronavirus/country/us/ US Data83M total cases – 1.02M deaths = 82M recoveredAt least 10% of those 82M recovered cases had long COVID (4M per year)8.2M of 334.5M (total US population) = 2.4% of the population
Douaud, G., Lee, S., Alfaro-Almagro, F. et al. SARS-CoV-2 is associated with changes in brain structure in UK Biobank. Nature 604, 697–707 (2022).
Phetsouphanh, C., Darley, D.R., Wilson, D.B. et al. Immunological dysfunction persists for 8 months following initial mild-to-moderate SARS-CoV-2 infection. Nat Immunol 23, 210–216 (2022).
The U.S. Department of Education, (July, 2021). Long COVID under Section 504 and the IDEA: A Resource to Support Children, Students, Educators, Schools, Service Providers, and Families. https://sites.ed.gov/idea/files/ocr-factsheet-504-20210726.pdf
Here's an excellent opinion piece on the risk of long covid, in WaPo, by Ezekiel Emanuel.
shoshannah said:Here's an excellent opinion piece on the risk of long covid, in WaPo, by Ezekiel Emanuel.https://www.washingtonpost.com/opinions/2022/05/12/stop-dismissing-long-covid-pandemic-symptoms/
I'm glad to see sometime with authoritative knowledge and a loudspeaker (WashPo) is also saying similar things to what I've been imploring people to avoid.
please do what you can to avoid getting COVID. Especially repeat infections.
Reviving this thread to bring news of exciting research results, announced this morning my time. I’m not sure if you’ll have heard:
https://www.abc.net.au/news/2022-08-11/long-covid-and-chronic-fatigue-syndrome-pathology-overlap/101318522Our morning news included parts of an interview about the findings, mentioning the impacted mechanisms - I’ll admit I haven’t heard or read all the article but it sounds promising. I noted the academic paper will be published in Journal of Molecular Medicine.
Continued research has shown some alarming data from an experimental model displaying neurological damage due to COVID-19 infection. Synaptic pruning appears to be turned up to an excessive level.
Please be careful. Please continue to wear a mask indoors. Omicron variants are still present. Look at the hospitalization rates around the US and in other countries.Another reason to wear a mask indoors is the recent rise in respiratory syncytial virus (RSV) and other respiratory maladies. Have you heard about this going around? It's called "not COVID" and whatever it is, a mask will reduce your chances of getting it, too.
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