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

Contrary to the hopes and reassurances of many, this is not something that will just go away magically.

https://twitter.com/user/status/1333837299394760710

 

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.

 

I am glad that doctors are recognising autonomic dysregulation in post-infectious illness. We need more research and treatments in this area.

 

This bit jumped out at me:

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.

 

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

 

NYC Health
COVID-19 Updates Dec 3 2020


https://www1.nyc.gov/assets/doh/dow...providers-dear-colleague-updates-12032020.pdf

 

https://twitter.com/user/status/1334237656562233346

I think she might be better to generally stay away from the recumbent bike she mentions a few times.

 

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".

 

It appears to be. She appears to be a clinical psychologist with a 'Psy D' or doctorate in psychology.
It also looks as if she may specialise in conditions like ME!

 

@Jonathan Edwards

In the article she is describing herself as having ME. I posted the quote above.

She had surgery and now she is suffering from ME and long-Covid?

 

No, I think she had ME and then had 'tethered cord' surgery (maybe for the ME) and now has Long Covid.

 

@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.

 

Yes, that is what read too.

 

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

 

https://twitter.com/user/status/1334888594062913536

 

ask Trudie.

 

elemental - How to Manage Long Covid-19 Symptoms and Fatigue by Megan E. Doherty
Covid-19 is new, but the ME/CFS community has dealt with long-haul-like symptoms for years. Here's how they cope.

 

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.