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

But is there a difference between post-viral fatigue, and post-viral syndromes?

My friend had post-viral fatigue after glandular fever/mono in her early 40s. I just checked with her and she didn't experience a whole variety of symptoms, only brain fog and feeling as if she was wearing 19th century diving gear. It was overwhelming – it sounds much worse than my ME fatigue when I'm not in an active flare-up – but uncomplicated.

 

@Kitty

https://meassociation.org.uk/wp-con...-Following-Coronavirus-Infection-30.04.20.pdf

WHAT IS POST VIRAL FATIGUE (PVF) AND POST-VIRAL FATIGUE SYNDROME (PVFS)? Some degree of post-viral fatigue (PVF) or debility is a fairly common occurrence after any type of viral infection. Fortunately, in most cases, this is short lived and there is a steady return to normal health over a period of a few weeks.
However, in some cases, a full return to normal health takes months rather than weeks. Additional symptoms may also develop, where the term postviral fatigue syndrome (PVFS) may be a more appropriate diagnosis.

 

Thank you for the link, I didn't realise that was out there. The friend's PVF took about 10 months to resolve (she was unable to work at all for seven months and had to do a gradual return), but fortunately she did make a full recovery. She never developed PEM or apparent immune symptoms.

 

@Kitty

My initial 'recovery' from my viral onset took 9 months. I was well enough to return to work, only to relapse 4 weeks later and became permanently disabled.

 

https://pubs.rsna.org/doi/10.1148/radiol.2020202040
COVID-19 –associated Diffuse Leukoencephalopathy and Microhemorrhages

 

I've been passing this leaflet from the ME Association on to people reporting post-covid symptoms. They seem to find it useful, however the response to the implication that they could have PVFS (and CFS down the track) is often "but I'm not really fatigued".

Of course, I said exactly the same thing over 20 years ago after not recovering from EBV when doctors suggested that I had CFS.

 

I wasn't feeling fatigued during my viral onset for 9 months, but I couldn't stand or walk for very long. It wasn't "fatigue".

The ME doctor I saw in 1992 asked if I had weakness or fatigue, and I said I don't know, but it's not weakness.

 

My husband had a post viral fatigue syndrome after a bad flu when he was forced back to work 3 days after being bedridden with a high fever because we had an arrogant GP who would not give him a sick line. He got thin, pale, exhausted for almost a year but we never ever considered it was the same as I had.

I had no fatigue just lots of strange neurological things and problems with temperature, standing and so on. basically I became paralysed long before I could experience fatigue.

I am all conflicted about this post covid thing. I am sorry for people who are ill and it sounds MEish rather than fatigue but where was everyone when I was being told my subconscious did not want to work? Maybe more sympathy for us instead of calling us terrorists would have found a treatment that was available to everyone getting sick now.

But then the not so good side of my nature wonders all the time where everyone is when our children are being taken from us but we are so discriminated against no one acknowledges we exist.

Not proud of these thoughts and they are fleeting, no point dwelling on grievances, and then I wonder whether there is going to be a whole generation of people joining our ranks as they are forced to exercise and I get angry with the ones who do it to us and see a wonderful opportunity for themselves with another load of patients' suffering. Keep them ill, make money "treating" them for years.

Will research into post-covid find treatments and better care for us or will Showalter bring out another book saying we are now saying we don't just get fatigue because we are jumping on another bandwagon.

I am just depressed about everything. My limited life has closed in, the treatments I got that kept me from being completely bedridden have stopped for 3 months and I can barely move, can't see my children and grandchildren and worried I will never feel safe enough to go out into the world again.

Oh no, foreseeing I would be depressed after forty years is obviously why I got ME in the first place!!!

 

I've talked to my family about this and they too said "this is a chance, this time they can't just say its in people's head. There is worldwide attention now".

Well...

Maybe I'm overly pessimistic but for me this feels like a giant..litmus test. If the BPS BS is being accepted here without major backlash, how are things ever supposed to change for US.

 

German article: Barely enough air to breathe: a family tells about their Corona odyssey
https://www.nordbayern.de/region/la...e-erzahlt-von-ihrer-corona-odyssee-1.10199632

 

We don't have an appropriate thread and its not worth creating one just yet, but this is post COVID related. I have seen anecdotal claims that medical bills for survivors range from $10k to $1100K. People may survive the virus but wind up with massive debt. This may be a severe issue that potential new ME patients have to face.

 

I'd like to propose a thought experiment for all you s4me people, starting with what do EBV and SARS-2 (or SARS-1) have in common in terms of infecting cells and causing disease?

 

I'm not feeling confident, but: EBV infects B cells, SARS-2 can infect T cells?

Edit: or is it that both can infect the endothelium?

 

https://www.jns-journal.com/article/S0022-510X(20)30282-3/fulltext
COVID-19-associated delayed posthypoxic necrotizing leukoencephalopathy

 

It's not any single thing that I'm looking for, but a list and hopefully we might spot some clear patterns.

 

https://www.thesun.co.uk/fabulous/1...-viral-fatigue-struggling-walk-panic-attacks/

 

Ramsay wrote that he saw low grade fever (100) in ME patients. I've never had a fever despite my sudden viral/vertigo onset.

High fevers appears to be a common symptom with COVID?

Reading all these news stories about post COVID does trigger memories though

 

Ditto. It takes me forever to read articles like that one by Brian Vastag & Beth Mazur in the Washington Post.

I read a paragraph or two, start crying, and have to take a break from reading.

 

Fox10 Phoenix "Today is day 93": People report experiencing COVID-19 symptoms that last for months

Dr. Mady Hornig, an immunologist and professor of epidemiology at Columbia University who is currently researching the long-term effects of a viral infection like COVID-19, has been confronted with an array of concerning symptoms that have persisted in patients, as well as herself.

Hornig can personally attest to the variety of symptoms that have been reported in coronavirus patients, ever since she began to experience COVID-19 symptoms herself in April that have continued to impact her daily life for the past 11 weeks.

...

Hornig has been researching one particular illness that has previously been linked to other coronaviruses like SARS and MERS.

According to the CDC, coronaviruses are a large family of viruses that are common in people and many different species of animals. Many people have previously experienced a coronavirus in the form of the common cold. But COVID-19 has not previously been identified in humans

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness Hornig said has been found in patients who have recovered from coronaviruses such as SARS. The CDC cites a 2015 report from the nation’s top medical advisory body, the Institute of Medicine, which says that an estimated 836,000 to 2.5 million Americans suffer from ME/CFS.

...

“ME/CFS is an urgent public health crisis based on what is happening in our country right now,” says Emily Taylor, Director of Advocacy and Community Relations at Solve M.E. “Evidence suggests that a virus as serious and widespread as COVID-19 could ignite rapid and significant growth in the ME/CFS population in just 36 months This is a very real, science-based concern, adding an even stronger sense of urgency to take action today. We must get the attention of our country’s leaders.”

 

Pretty good article!

Hornig seems to have developed POTS:

I have seen many reports of people with COVID-19 saying they had it but only for a few weeks. Hopefully this is the case for her. It would be incredibly useful to be able to tell what physiological changes this involves.

I wonder at what point this will begin to factor in the public health decisions. Medicine is already unable to deal with the millions of us, it can't possibly manage millions more. Herd immunity must be avoided at all costs.