• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

“Will COVID-19 Leave An Explosion of ME/CFS Cases in its Wake?”

Wally

Senior Member
Messages
1,167
I know the question about whether COVID-19 could also cause some patients to come down with ME/CFS has been discussed on the Forum, but I could not locate those threads or posts when I went searching for them. So, I am making a new thread for a link to an article by Cort Johnson (published today on the Simmaron Research website) to add to the discussion because I think it provides some additional information/thoughts on this topic.

See, http://simmaronresearch.com/2020/04/will-covid-19-leave-an-explosion-of-me-cfs-cases-in-its-wake/
Will COVID-19 Leave An Explosion of ME/CFS Cases in its Wake?


Cort Johnson

April 2, 2020
. . .
Opportunity Knocks

It’s possible that post-SARS illness cohort will be so large, affect so many younger people, and cause such losses in economic productivity that the NIH and other research institutions will, this time, focus considerable resources on the post-infectious consequences of having a severe infection.

The Dubbo studies and others have invariably found that the type of infection (bacterial or viral), the type of tissue it primarily infects (respiratory system, gut, brain) doesn’t matter. For the most part, after a period of time, the post-infectious illness patients look like each other: they look like ME/CFS/FM patients.

Using post-infectious ME/CFS patients to help understand what post-SARS patients will be going through seems to make perfect sense as well. Avindra Nath’s small, but comprehensively studied, ME/CFS group in the NIH’s intramural study, could provide clues for post-SARS studies. Expanding Nath’s ME/CFS cohort and using the study to help understand the massive hit SARS-CoV-2 is likely to produce, not today, not tomorrow, not in three months, but in the years to follow would make perfect sense.

Even more impactful would be rigorously following and studying the mass post-COVID-19 cohort that will emerge in order to understand how post-infectious diseases emerge and how to treat them. . . .
@Cort
 

nyanko_the_sane

Because everyday is Caturday...
Messages
655
That fact that I know of at least one person that claims to have ME from an exposure to a Coronavirus back in the 80's. I would say that there is a very good possibility.
 

lenora

Senior Member
Messages
4,913
This will prove to be interesting. As a survivor of the AIDS years, and the severe lack of Research into what was then termed CFS/FM, I'll hold my breath on more Research being done after the Coronavirus unless private money funds it. Of course we had to be turned into the bad guys, the lazy ones, people who are/were psychologically fragile (and who wouldn't be after a few years of this?) I encourage you to be very pro-active in making certain the spotlight stays on ME. If you stress the Coronavirus too much, the govt. will simply drop out as soon as it can make the necessary excuse.

Trust me, I waited through the non-existence of ME, that I must have psychiatric problems, that I couldn't get Workmen's Comp. unless I was blind and. I never did receive one cent in Disability, but that's fine. I learned, boy did I learn how to help people apply for it. The forms they needed, how to fill them, the info from their doctors'...you name it I learned it, and in the proceses I helped multitudes who deserved and needed it obtain the funds. Each state is often a bit different, the problem has to be renewed every so often, etc., but people are now getting funds. This wasn't occurring 34 years ago...oh, no! I also thought the Research into MS (and boy, does it get a fortune, and no I'm not saying they shouldn't BUT I did think the results would filter down to us) Boy, was I wrong...we never saw any of it and plenty of money has gone into MS Research (as it deserves to...these folks were us just a few years before us. I remember when MS was considered unproven; thus psychiatric), different viruses that could have become ours, but thanks to people like Dr. Davis, Nancy ????? (having one of these phase-outs that are new to me due to my autoimmune encephalitis, .and a number of other good doctors, we now have properly trained Researchers in our disease. Unless we can round up more private funds (and I think it can be done; it's been done in many diseases before and cos. are now giving doubling of an employee's donation), I don't think we can rely on the govt.

I'm not discouraging you from thinking you'll get help after the chronavirus outbreak, but I'm strongly encouraging you to take matters into your own hands. Raise money, talk to other groups, find out how they were able to breakthrough...perhaps it's time for an American-Overseas group of Researchers to make a presentation...whatever it is, make use of it because you want to be doing more than I am at age 73 and with the people I have in my life. Work together...and if necessary, do as I've done, I simply began as per usual one day and by the time it was mid-afternoon I knew I had to get out of it for a long time. Bear in mind that I'd been a fulltime volunteer for over 25 yrs. at that point. I did although I have sent money for Research, but you don't have to do the really tough stuff I was doing. You're a nice group, a smart group, a grateful group and I have a feeling you'll come up with something. Yours Lenora.
 
Last edited by a moderator:

Booble

Senior Member
Messages
1,390
I think so too. I don't know what I had in December/January but it had all the symptom of Covid-19. Except that it was in December before it got to the US. I was living in Honolulu right on the edge of Chinatown so who knows? Here it is April and I'm still blah.
 

Hip

Senior Member
Messages
17,824
I find that using the search query does not always work for me.🥴 I will “Report” myself 😜 to a Moderator, so they can hopefully delete this thread and add the article/post into the earlier thread.

I don't think it matters that there are two threads.

Sometimes a Google search of PR works better, that can be achieved by adding site:forums.phoenixrising.me into the search field of Google, like this.
 

lenora

Senior Member
Messages
4,913
I think so too. I don't know what I had in December/January but it had all the symptom of Covid-19. Except that it was in December before it got to the US. I was living in Honolulu right on the edge of Chinatown so who knows? Here it is April and I'm still blah.

When things die down a bit, why don't you have the COVID test? It may help put your mind at rest. Also remember this: With the flu, even tonsillitis it can take weeks, at least, before we feel like ourselves. Exhaustion is a huge part of it.

I had the Hong Kong Flu a very long time ago but still remember that the exhaustion was never-ending. I was going to both school and working and just fell asleep on the sofa afterwards. I was a teenage girl and for months I was wearing an undershirt b/c I was so cold. I was sick during that time and, for all I know, that was the beginning of ME. I've never skipped a flu shot since, that much I can tell you.

Sure we may not be carriers at this point, but we're still pretty sick people who really need to come home from work, go right to bed and let someone else cook. The body doesn't just heal overnight and we have to give it as much help as possible. Skip a shower for a night or two, you won't disintegrate & besides, you can buy fairly large dampened towelettes to use...on your face and body. I hope you'll feel better. Spend your weekends in nursing yourself in any easygoing way you can. I hope it passes. Yours, Lenora.
 
Last edited by a moderator:

lenora

Senior Member
Messages
4,913
Hey, listen, nyanko_the_sane....I'd be thrilled to have the govt. fund Research I don't want to see lives turned upside down the way mine was, how do I know that my children/grandchildren won't face it one day and yes, my heart literally hurts when I hear of young people who can no longer concentrate, have completed fine educations, those who can't get Workmen's Comp or jobs anywhere, marry or have children b/c they can't take the chance...it makes me mad. And I've talked to many, many of them...I know they're out there and the early years are often the hardest.

I haven't read the above yet, but over the years there have been many, many so-called matches for our illness. One hears about it.....and then it disappears forever. Like not all Doctors are created the same; nor are all Researchers. Most are highly committed and ethical, others...well, you just wonder about what's happening in their brains!! This is humanity, but I don't/won't buy into anything you read until it's a proven fact. I've known people from the very beginning of this epidemic (meaning there have been other epidemics). Most are dead now, but I know they all would feel the same way I do. We're not a mean lot, we don't wish harm on others b/c we understand what suffering can be like, we accept the lives we have. We actually get our kicks out of helping other people & it sustains us. Like I said though, you won't see this old fool fooled by another proof that ME is similar to COVID. Similar is not the same...and I hope real proof will accompany it. We've all searched long and hard for answers to this place we're stuck in, in the meantime we have lives to live and I hope you'll find your way with your life. . Yours, Lenora.
 
Last edited by a moderator: