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Coronavirus Pt. II: Scary Models, 8 Reasons People with ME/CFS and Fibromyalgia Should Be Careful


Senior Member
This is a repost of an article from Health Rising about specific concerns ME/CFS patients should have about coronavirus. To summarize the article, take care of yourself and avoid the virus since we have immune system abnormalities. These abnormalities need to be considered with respect to coronavirus, since it may reduce our resistance to Covid-19. We need to be aware of the limitations ME imposes on us and adapt accordingly. Anyway, the article has suggestions for self care for ME patients during this time of Covid-19 pandemic.
Coronavirus Pt. II: Scary Models, 8 Reasons People with ME/CFS and Fibromyalgia Should Be Careful, How to Stop an Epidemic, Why You Should Trust No One and More
by Cort Johnson | Mar 15, 2020
Link: https://www.healthrising.org/blog/2...hronic-fatigue-syndrome-fibromyaglia-careful/

Eight Reasons People with Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia Should Take Care
Please note, if it’s not obvious, that I’m not a doctor – I’m a patient. Take these musings as you will. We don’t know if people with ME/CFS or FM are more at risk of: a) getting COVID-19; or b) coming down with a severe case of it they do. Because both appear to be quite heterogenous diseases, it’s possible that some people will be at lowered risk while others will be at higher risk.

It’s hard to tell how much risk people with ME/CFS and FM are from COVID-19. Elderly people with a serious disease are at the highest risk.
Thus far, the studies coming out of China suggest that having diseases like hypertension, cardiovascular diseases and diabetes, particularly in combination with older age (>65), increase the risk of mortality. Note that diseases thought to have more in common with ME/CFS or FM such as multiple sclerosis, rheumatoid arthritis and migraine are not on the list.
There are some broad factors, however, which suggest people with ME/CFS and/or FM might want to take extra care.
1. Infectious Onset – the most obvious one; if a nasty infection started off your illness – what might a possibly nastier infection do?
2. Poor Sleep – Studies indicate that people getting reduced levels of sleep (<6 hours) are far more likely to come down with a cold than those getting normal amounts of sleep.
During sleep, pathogen-fighting immune cells move to the lymph nodes where they search for evidence of a pathogen. If they find it, those immune cells mount a furious (and metabolically expensive) immune response. Unfortunately, poor sleep also reduces the metabolic reserves our immune cells need to fight off infections!
Plus, having insomnia or late bedtimes reduces hormones that are produced during early sleep which enhance T-cell activity and promote pathogen defense. All in all, now is a good time, if you haven’t, to implement some sleep hygiene protocols.
3. Reduced Natural Killer Cell Cytotoxicity – reduced NK cell cytotoxicity (NK cell killing ability) is a hallmark of ME/CFS. Because NK cells are amongst the first immune cells to encounter a pathogen, a good NK cell response might be able to ward off an infection before it gets started. A poor one, on the other hand, might give a pathogen more time to get settled. I don’t know if there’s any evidence, though, that people with ME/CFS and/or FM are more susceptible to colds.
4. Activated Stress Response – The low heart rate variability (HRV), common in both ME/CFS and FM, suggests hyperactivation of the sympathetic nervous system (SNS) (fight or flight system) has occurred. Activated SNS responses are associated with Th2 dominance in the immune system which translates into a reduced ability to fight pathogens such as viruses (and increases risk of autoimmunity). They’ve also been associated with poor sleep in ME/CFS.
5. Immune Exhaustion / Altered Immune Networking – The Hornig/Lipkin cytokine studies in the blood and cerebral spinal fluid suggest a state of immune exhaustion may be present. Dr. Klimas’s immune networking studies – showing odd and blunted networking – back that idea up as well. Dr. Klimas reported that ME/CFS patients are “modestly immunocompromised” and are “a little more” at risk than others.
6. Brainstem Issues – Several Australian studies suggest that damage to the brainstem has occurred in ME/CFS. A recent COVID-19 study (thanks Helen!) demonstrates that the virus can invade the brainstem, in particular, and the brain as well. Invasion of the brainstem could be contributing to the breathing problems found in severe cases. (The virus can also apparently invade the gut at times.)
7. Lack of Exercise – It turns out that exercise is darn good for your immune system. Studies indicate that regular exercise improves immune health and enhances our ability to fight off infections.
8. Bedrest increased bed rest is associated with reduced levels of the IL-2 cytokine which tells our T and B lymphocytes and NK cells to go out and fight off invaders; i.e. possibly reducing the immune system once again.
All in all – lots of reasons to limit your contacts, rest as much as possible, do things that are relaxing and calming and take care of yourself.
On the brighter side, Dr. Teitelbaum urges people with ME/CFS and FM not to panic. He stated that he’s never seen people with these diseases die from the flu, and he doesn’t expect, as nasty as this bug can be, that they will from COVID-19.
Scary Models and Super Freaks

COVID-19 may be as contagious and nearly as lethal as the HINI flu that sparked the 1918 pandemic but there’s no reason to believe it will have the same effects.
The “scary model” was the Institute for Disease Modeling study which calculated that COVID-19 is as contagious and almost as lethal as the HINI flu virus that sparked the 1918 flu pandemic. The “super freak” was that COVID-19 is as contagious and almost as lethal as the HINI flu virus that sparked the 1918 flu pandemic and killed more people than the bubonic plague and HIV/AIDS has to date.
The Institute’s model also asserts that after HINI, COVID-19 is the most transmissible and severe flu virus the world has encountered over the past 100 years.
That’s scary but it’s clear that whatever happens with COVID-19, it’s not going to be anything like the Spanish Flu. While we travel more and are more connected (a minus), the Spanish Flu took place during wartime when the movements of huge numbers of soldiers across the U.S. exacerbated the epidemic, the health care system was a joke compared to what it is now, we have many more tools, we’re better informed, and we’re starting to take the precautions needed to ward off the worst effects.
One of the most disturbing aspects of the “Spanish flu” – which incidentally appears to have originated in the U.S. – was how devastating it was for young people. That is not happening with COVID-19.
Trying Not to Be Seattle
Two weeks ago “I probably would have said that there’s a possibility that this will become endemic.” Now, “I think given our government’s public health response, I’m much more alarmed that this probably will become endemic.” Angela Rasmussen, a Columbia virologist
Seattle is one city we know COVID-19 got in early (mid-January) and has spread. Genetic analyses indicated that, as of late February, the virus had been spreading for at least six weeks. Statistical modeling done in early March suggested that 500 to 600 cases of COVID-19 were probably present in the Seattle area.
Washington’s health care system began reeling early. Two weeks ago, Tom Staiger, UW Medical Center’s medical director, wrote, “We are currently exceptionally full and are experiencing some challenges with staffing” and asked staff to expedite discharges; i.e. open up more beds.
Later modelling efforts suggested that unless strong social distancing measures were taken, Washington was looking at 400 deaths and 25,000 infections by early April. Another model projected that social distancing — limiting contacts with others — could reduce deaths caused by infections acquired in the next month in the Seattle region (one of the hardest hit regions) by 75 percent (from 400 to 100).
Since then, schools have been closed, large gatherings banned, farmer’s markets shuttered, and small groups discouraged. Yesterday, the New York Times reported 421 confirmed cases in Washington and 34 deaths. If the earlier modeling was correct, the authorities are still missing hundreds and hundreds of cases. It’ll be very interesting for the rest of us to see how Washington does.
Are We Already Seattle?
“What we should be doing is absolutely much different. Not business as usual.” Anthony Fauci​
The United State’s big problem – and we are not alone is this – is that we won’t know how much coronavirus is out there until testing ramps up. Arizona’s Director of Health, Dr. Cara Christ, reported yesterday that the CDC’s models suggest that 70,000 people in Arizona are now infected with the virus. That’s an incredible number given that only 12 people in the state have been diagnosed with it, but that’s what ABC news is reporting, Dr. Christ said. To date, Arizona, population 7.2 million, has only tested about 150 people.
Dr. Amy Acton, Director of the Ohio Department of Health, believes a similar scenario is happening in Ohio:
“We know now, just the fact of community spread says that at least 1%, at the very least, 1% of our population is carrying this virus in Ohio today. We have 11.7 million people.”​
Let’s hope those numbers are an exaggeration. If they’re anywhere close to being accurate, the cat truly is out of the bag and every major city is basically, or soon will be, where Seattle is. The virus is everywhere.
It might not be that surprising. We know, after all, that COVID-19 is a very impressive traveler. Consider that it was just January 19th, that first documented case of COVID-19 showed up in the U.S. in the form of a 35-year-old man with a cough and subjective fever at an urgent care clinic in Snohomish County, Washington. (He’d returned from Wuhan city.)
Less than 2 months later, even with our very limited testing regimen, the virus is not just in California, New York and Texas; it’s in North Dakota, Alaska, Idaho and Montana as well. In fact, it’s been found in every state of the union except one. A couple of days ago, a person on the Navajo Indian Reservation, a large but rather remote reservation in northern Arizona, tested positive. Think what it took for the virus to get there.
The missing state – West Virginia, population 1.86 million – has tested a grand total of 31 people. (It’s there.)
The Chinese timeline indicates demonstrates the explosive growth the virus can achieve. The number of infections in China jumped from 550 on January 22nd, to 2,000 by January 26th, to 6,500 by January 27th, to almost 12,000 on February 1st. (As Peyo points out, some of the jump is due to increased testing.) The U.S. went from 15 cases on February 29th to 2,500 on March 14th – and that’s, again, with quite restricted testing.
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Senior Member
Haven't read the whole article yet, but so far, it's really good. Thanks for sharing!
You are welcome. It just so happens I have another autoimmune condition called interstitial cystitis (IC). This autoimmune condition affects the bladder. They now know there are several different types of interstitial cystitis. The type I have causes ulceration in the bladder. This type was found to be associated with viral infection: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4556646/

This said, I've spent the last two years looking into antiviral drugs and herbal remedies. I did have improvement with from IC with prescribed antiviral meds. I've heard some ME patients getting reprieve from antivirals. I finally got my doctor to prescribe them, but he quit so I experimented with them only briefly.

However, during this time I did pursue learning about herbal antivirals. Here are some articles about herbal antiviral remedies. BTW, I read an article about how licorice helped with SARS, another coronavirus. I must state I'm not a doctor, I have no studies to share as of yet to corroborate if these herbal remedies are at all effective with Covid-19 or ME CFS.

Also, I haven't yet used myself as a guinea pig to see if herbal antivirals healed ME or IC. I surely will use myself as a guinea pig in future. So check with me later about that. In the mean time, I'm sharing this information, in the hopes it's useful. My attitude is, thought they don't cure Covid-19 but they can't hurt. Knowledge is power, it's important, and I want to share anything which can be helpful in any way, even remote. So here's some articles for you to read about natural antivirals. Enjoy and take care of yourself!


Mouse girl

Senior Member
Herbs can and do hurt people. They are not regulated or tested and many of them have been known to cause organ damage, sooooo..........I wouldn't put your hopes on them. One thing to always remember is that alternative medicine means that it is not medicine. If herbs worked, we wouldn't need to have drugs at all. Are some helpful to some.....maybe but there isn't any real proof. They studied herbs for centuries and they get many drugs from parts of herbs, often taking out the harmful elements etc. There are always studies that aren't real, that have no scientific relevance that will have claims of curing and helping everything and anything. In 25 years of being very ill and being involved with the illness community, I have never seen any evidence of people being helped by alternative methods. I've seen many people lose hundreds of thousands of dollars and more on them. I've lost time and money trying all of it. Diet may have helped me, but I don't know either. People will hold onto their beliefs over fact for some reason I don't understand. Look at the anti viral peeps. Steve Jobs said that his biggest regret of his life was not listening to his MD's and buying into alternative medicine. He had a chance of being cured since they caught his cancer early and could operate, he choose alternative. He warned his friends who had cancer to listen to their doctor before they died. So, yeah. Herbs have have been studied for viral infections, including the flu, they do not work. You can certainly try them, but make sure you monitor yourself for side effects and don't take them long term as that is where you see organ damage. I'm not sure why there has been such hard core anti science going on in the world, but it is scary and damaging to humans, the environment and the world at large. Don't believe everything you read, especially on the internet. Learn how to think scientifically, looks for reliable sources, see if studies have good parameters, are peer reviewed and large scale or long term.

Rufous McKinney

Senior Member
If herbs worked, we wouldn't need to have drugs at all.

Many drugs are obtained from: herbs.

I use chinese traditional herbs, and they are from companies who test them, unlike most stuff produced in the US. These herbs are often very effective and I would not chose to live without them. They are part of an herbal system and I do not self prescribe. I work with a very talented expert, who understands how to mix and deal with the variation in bodies necessary to successfully resolve these issues.

Just recently, my Primary Physician recommended herbs for me, rather than the Pharmaceuticals which came with debilitating side effects.

I agree that just throwing things down because you read something someplace is NOT a good idea- in part because herbs CAN actually be very effective, or have effects that need to be fully understood. And they interact.

And is anybody's doctor monitoring their livers?


Senior Member
U.S. Atlanta
Eight Reasons People with Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia Should Take Care

I can’t argue caution and I sure wouldn’t want to test this idea... but being a proponent of the HEPA activation theory (research) I feel like my immune system is in overdrive and I’m less likely to get with COVID-19. I don’t get colds or other common infirmities. Maybe it’s the case and we who are of this subgroup might experience a silver lining. Nevertheles, caution and the wind make for strange bedfellows=&

Mouse girl

Senior Member
And we must always remember, that there are endless unethical people and companies out there who take advantage of desperate patients willing to try anything and everything. People complain about big pharma without realizing that alternative medicine is much more corrupt and just as big. Making big profits off of desperately ill patients are unethical and immoral. And yes, like I said, many medicines come from herbs but the drugs have the properties that work and in the right does and take out other properties that can harm etc. Chinese medicine is also well known for killing animals that are going extinct. Chinese medicine also causes horrific trafficking and torture of animals for completely fake claims that the torture makes the animal products have magic powers. Now, these products aren't in all herbs, of course, but it's good to be informed. I remember I used to take some herb supplement many years ago for fevers and I thought it actually worked. Cut to.....that herb product being banned because it had Tylenol in it (which is why it worked for fevers) but they didn't say it had Tylenol in it so people died by taking too much. I wish more sick people could talk to old people who saw what life was like without modern medicine or vaccines. You don't find mentally well old people who are anti vaxxers because they know better.


Senior Member
United Kingdom
My B lymphocytes have been low in the past but I don't think my NK cells ever have on full blood work (I've had that done so many times I've lost count). Interesting point anyway, siberian ginseng used to make my immune system almost perfect, I was able to fend off a terrible cold and sore throat relatively easily. I can't take it anymore though as the personality changes are not pleasant. But I wonder what effect it had to cause such a good overall immune system response. It doesn't appear to do much for NK cell proliferation or number according to one study.