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.
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
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 modeling 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 the 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 about 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.
- Check out the simulations in this Washington Post article – to really get how rapidly an infection can spread. (Thanks Pat!)
- Several factors (infectious onset, immune exhaustion, poor sleep, sympathetic nervous system activation, etc.) suggest that people with ME/CFS/FM should probably be more careful with the coronavirus.
- Dr. Klimas, immunologist, reports that people with ME/CFS are modestly immune comprised and are probably a bit more likely to catch the virus
- Recent modeling efforts suggest the coronavirus is as contagious and almost as lethal as the HINI virus which triggered the 1918 flu pandemic. (There is, however, no indication that it will cause nearly as much trouble.)
- Both Arizona and Ohio health officials report that modeling efforts indicate that massive numbers of people are probably infected (70,000 in Arizona) and passing the virus around.
- Less than two months after the virus was first reported in the U.S. it has been found, despite very limited testing regimens, in 49 states.
- The State of Emergency announced by Donald Trump, an increased emphasis on getting test kits out, and the House measure indicate the feds are now moving forcefully to corral the virus.
- Modeling efforts indicate that strong “social distancing” measures taken early in an infection are critical to reducing misery, economic distress and death later on.
- China was able, through its aggressive actions, to throttle the outbreak in less than 20 days.
- Recent studies indicate that asymptomatic, apparently healthy people are able to spread the virus and are contributing significantly to its spread.
- Check out more protective measures and treatment regimens at the end of the blog.
- Both Solve ME’s and ME Action’s Advocacy days are going online.
Feds Finally Spring to Action
The current number of COVID-19 cases in the U.S. is “going very substantially down, not up.” President Trump, Feb 26th
“The 15 (cases in the U.S., within a couple of days, is going to be down to close to zero.” President Trump, Feb 26th
Remember two weeks ago? It was just a bit over two weeks ago, on February 26th, that President Trump reported that the number of infected Americans (then just 15) was going down and he thought it was going to be soon close to zero.
Two days ago, President Trump declared a State of Emergency that added up to $50 billion to fight the virus, gave the Secretary of Health broad new powers to waive rules and respond more proactively, and produced new efforts to dramatically increase the production of test kits, including the goal of developing a test that can determine if the virus is present within one hour.
The House measure that passed includes two weeks of increased paid family and medical leave, unemployment help, free virus testing, food aid, and federal funds for Medicaid. The fact that it does not include paid sick leave for everyone, however, means that some people who get sick are likely going to try to work through it – and will infect others. Still, it’s a major step forward.
President Trump and members of his administration are still stepping on their own message a bit. Just last Wednesday, Trump talked about infected people going to work and getting better – as most will – forgetting the more important part about them spreading the virus while doing so. Just three days ago, his Chief Economic Advisor, Larry Kudlow, said he thought the outbreak had been “contained” and urged Americans to “stay at work”.
The most important thing, though, is that the administration and Congress have gotten the message. The big question is: have they moved fast enough to corral the virus? Plenty of evidence suggests that the virus is not some superman that can’t be tamed. It can be tamed if we act quickly enough.
Is the Sun Still Shining?
“Working with many of the people who are watching this most closely, I don’t know of anyone who thinks there’s a good reason why we would not end up in a very similar position to Italy within two weeks. What is infuriating is that this was a very real possibility as soon as we saw what happened in Wuhan in January. We could have been preparing for this for two months.” Jeremy Konyndyk, Senior policy fellow at the Center for Global Development
”You’ve got to take potentially very disruptive actions when the sun is shining and the breeze is mild.” Dr. Carter Mecher – former director of medical preparedness policy at the White House during the Obama and Bush administrations.
The big question for the U.S. and undoubtedly other countries is whether the U.S. is Italy waiting to happen or whether it’s South Korea. Both were hit hard early; one has reported the highest death rates yet from the virus while the other, while it has a lot of cases, has reported very, very low death rates.
Confirmed infections in the U.S. are increasing every day.
A lot is apparently going to depend on how good we are at social distancing. Social distancing causes a great deal of pain economically in the short term but leaves us a heck of a lot better off in the long term.
Fauci Endorses Idea of a 14-Day National Shutdown
Yesterday, Anthony Fauci endorsed something approaching a 14-day “national shutdown… as much as we possibly could.” He stated, “I think we should really be overly aggressive and get criticized for overreacting”, and stated he didn’t believe that Americans were taking the virus seriously enough.
The CDC called for a halt to most gatherings of 50 people or more.
An interactive model, “How Much Worse the Coronavirus Could Get, in Charts“, put together by an infectious disease epidemiologist, shows why. It demonstrates the immense difference an aggressive approach to “social distancing” can make.
Note that even in the best of cases – with an “aggressive” social distancing effort starting today – the model predicts 535,000 people will be infected at the peak of the epidemic.
Contrast that, though, to the 9 million infections at peak – a number that could completely swamp our health care system – and the 100 million infections in total that it predicts will result if we use “mild” social distancing measures.
- Travel Ban-itis – President Trump has continually touted how effective his travel ban on China was, and has since instituted others. At one point he said it saved millions. Check out in this Washington Post simulation (second figure)why city lockdowns and travel bans don’t really work, particularly in large countries like China and the U.S. (Thanks Pat!)
How To Stop an Epidemic
China – the birthplace of the pandemic – appears, ironically, also to be showing us the way out. A fascinating overview “Coronavirus: Why You Must Act Now” (Thanks Betsy!) of what happened in China is illuminating.
China, like us, started off way behind the curve. For over a month, the virus spread through the population without China either knowing it was there or doing much about it. (It’s been present in the U.S. for almost two months now.)
Chart 7 shows that people in Hubei province started coming down with symptoms of the virus in early December.
It was not until December 26th, however, that Dr. Xiang, who later died from the disease, first noticed unusually severe cases of pneumonia and tried to alert the authorities. A week later, the Chinese authorities closed down the Hunan Seafood market and notified the World Health Organization that something was going on.
China reported its first death from the virus on January 11th – about a month after the virus first began to really appear. At that point, about 500 people a day were being infected in China, but because China’s test kits weren’t developed until January 13th, no one was being diagnosed.
The U.S. recorded its first death on February 29th – about a month after the virus was first found here. The fact that the U.S., even with its limited testing abilities, is already identifying 500 infected people a day (surely well below the true infected rate) suggests that, if this chart is correct, the virus may be spreading faster in the U.S. than it was in China. If the situation in the U.S. is analogous – a big leap, for sure – the virus may be producing thousands of new (and undiagnosed) infections every day here.
It wasn’t until January 18th that the Chinese actually diagnosed someone with the disease. On January 20th, the day Wuhan City was shut down, 2,500 people were contracting the disease. The next day, the Chinese government shut down 15 more cities and instituted extreme social distancing measures.
The effort had immediate effects. While the number of COVID-19 diagnoses would, because of ramped-up testing, dramatically increase for the next two weeks, the number of new infections began to drop dramatically.
By February 10th – just 20 days after Wuhan was shut down – China was essentially in the clear. Despite having 80,000 confirmed COVID-19 cases and over 3,000 deaths, China reported only 15 new cases yesterday. The U.S reported over 500 new ones. China’s effort demonstrates that social distancing can, if aggressively implemented, quickly bring even a raging epidemic to its knees.
This is presumably why Anthony Fauci is at least partially endorsing a short but dramatic nationwide shutdown. Two weeks would give the time for many people who are infected to largely fight off the virus – and become virus-free – leaving fewer to spread it.
- This Washington Post simulation (figure 3) hows why social distancing is one thing that can work. (Thanks Pat!)
Trust No One
Officials have been downplaying the role asymptomatic people have been playing in transmitting the virus for weeks. On March 1st, Secretary of Health Azar stated: “It [the containment strategy] really does depend on symptomatic presentation.” But today, CNN reported that half a dozen studies have shown that asymptomatic people are, in fact, playing a substantial role in spreading the virus.
CNN reported that Michael Osterholm, director of the Center for Infectious Disease Research and Policy at the University of Minnesota, stated: “We now know that asymptomatic transmission likely [plays] an important role in spreading this virus” and that it’s “absolutely clear” that asymptomatic infection “surely can fuel a pandemic like this in a way that’s going to make it very difficult to control.”
William Schaffner, a professor at Vanderbilt University School of Medicine and longtime adviser to the CDC, echoed Osterhelm’s thoughts:
“Asymptomatic and mildly symptomatic transmission are a major factor in transmission for Covid-19. They’re going to be the drivers of spread in the community.”
If asymptomatic transmission is occurring in anything approaching significant amounts, those statements makes perfect sense for a highly contagious virus that just needs a toehold to get started.
We’ll probably see “accepted wisdom” overturned several times before this saga is over.
For now – trust no one – whether they look healthy or not.
Testing, Testing, Testing
“Anyone who wants a test kit can have one: That’s the bottom line – President Trump – March 6th
“Frankly, the testing has been going very smooth.” President Trump – March 12th
Being able to test people, determine who is infected, and then isolate them and the people they’ve come into contact with, is obviously critical. We haven’t done so well at that.
Ashish Jha, Director of the Harvard Global Health Institute, stated that the U.S. response has been “much, much worse than almost any other country that’s been affected.” and used words like “stunning,” “fiasco” and “mind-blowing” to describe it.
A piece on NPR reported that as of March 11, while the U.K had performed 347 tests per million people, Italy 826 tests per million people, and South Korea a staggering 3,692 tests per million people, the U.S. had performed just 23 tests per million people. The Texas Tribune reported on March 11 that Texas’ largest public health lab can do a maximum of 26 tests per day.
Things are changing, though. Vice President Pence reported that 1.5 million test kits will be available this week.
- Roche – Roche reported that its “cobas 8800 system” can provide results within 4 hours and could provide millions of test a month.
- Questlabs – One of the biggest labs, Questlabs, reported a couple of days ago that it is approved to do coronavirus testing as well. A doctor’s approval is needed first and the sample must be delivered in a doctor’s office.
- Thermo Fisher – reported it plans to have up to 5 million test kits available within three weeks
Drive-Through Testing Coming to a City Near You? – China used drive-through testing to good effect. This quick, efficient way of testing exposes health care workers to less risk. Thus far, cities in cities in California, Colorado, Connecticut, Minnesota, New York, Texas, and Washington, have opened drive-through coronavirus testing stations.
The Weird Death Rate Figures
The death rate figures for some countries are so at odds with each other that one wonders if they can be trusted. Either something very different is happening in some of these countries, or the figures are off. Take Italy, for instance. Italy, with its 17,000 confirmed cases, has an astounding 7.1% death rate. Right now, South Korea with its 8,000 confirmed cases has a death rate of .89%. (The U.S. death, right now, is 2.1%.)
What is the difference between Italy and South Korea? Aging populations in Italy? Better resources in South Korea? It’s notable that the death rate in Wuhan province, China (2.3%) dropped dramatically in provinces outside of Wuhan (0.5%) where medical resources were more plentiful. It’s a very good question – and it suggests that the death rate figures might not be as solid as we might think.
Meanwhile, a chart on the Worldometer website demonstrates how dramatically more dangerous COVID-19 is for the elderly.
Another oddity – France reported that over half the coronavirus patients in intensive care unit there are under 50.
The Silver Lining to an Epidemic: Herd Immunity
Herd immunity is the silver lining to a raging COVID-19 epidemic. If enough people get infected and survive – and there’s no reason to think that the vast majority of people will not survive – they’ll develop an immunity to the virus – making it more difficult for it spread again. It’s called herd immunity. The virus will have so many fewer hosts that it will just peter out.
ME/CFS Doctors on COVID-19
Bateman Horne Center Q&A on March 18th
- Click here to register. Once registered, you will receive an email with a link to join the event and an invitation to submit your questions. First-time Zoom users will need to follow the prompts for installing the software. This is a safe and easy process to complete.
More Treatment Ideas
- Use saline nose drops to rinse off the areas where the virus would attach in your nose. This is because the virus goes up through the nose into your airways.
- Dr. Klimas suggest trying nose sprays with xylitol in the U.S. (and cellulose in Canada and Europe) that coat your nose, reducing the ability of viruses to bind to the mucosa in your nose. Look for the sprays in either the cold/flu or the allergy section of stores.
- If you have asthma – take your medicines to reduce lung inflammation – which could help viral entry.
- Don’t touch your eyes with antiseptic sprays. Some are very powerful. DeJurgen presented a horrific story of a woman who suffered severe eye damage after contaminating her eyes with antiseptic sprays.
- Practice pre-bed hygiene. Stop any virus particles in your nose and mouth from getting to your lungs while you sleep. Do this by washing your hands and face well with soap and warm water, including — on a finger — a quarter-inch into each nostril. Then, gently blow your nose. DON’T use those irrigating devices, like neti pots, that might force virus further inside! Brush your teeth and tongue, swish and spit, and gargle once or twice with an antiseptic mouthwash. Find out more here.
Natural Health Immune Support Ideas
- Dr. Klimas – Enhance immune function by enhancing their energy stores and reducing oxidative stress CoQ10 (ubiquinol 200 mg/day during high-stress times), NAC (600 mg/1-2x’s or more a day (not at bedtime), glutathione (liposomal), Vitamin C, carnitine. Do that first to build the cells up and then add methyl or hydroxy B-12, methylfolate, and immunovir from Canada (more potent), or isoprinosine in the U.S. to enhance NK cell cytotoxicity (be sure to hydrate well and take two days off weekly to prevent increased uric acid levels). Can help with respiratory tract infections.
- Dr. Teitelbaum – has been treating people with ME/CFS and FM for decades.
- Dr. Jockers – his “Natural Solutions” title is a bit much, but Jockers presents an excellent overview of the virus plus some common-sense alternative health suggestions.
- Dr. Maya Shetreat – provides a series on boosting your immune system and lungs and reducing your stress levels.
- Jill Carnahan – How to protect yourself.
- Amy Meyers – Ways to reduce stress naturally.
Advocacy Efforts Have Gone On-Line
Solve ME’s big Advocacy Day in April in Washington is now happening on-line.
- Millions Missing’s International May 12th Day is Going Online as well and check out ME Action’s COVID-19 Resource page
The Coronavirus Series From Health Rising
- Coronavirus #I: Dark Sun: Reflections on the Coronavirus as it Heads For Town
- Coronavirus #2: 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
- Coronavirus #3: Is the U.S. Becoming Italy? A Singapore Success Story, More Scary Models, Remdesivir to the Rescue?
- Coronavirus #4: Lipkin Gets Hit, Testing Woes, Could the Models Be Wrong, Ikea Ventilators?, and What’s Next (???)
- Coronavirus #5: Lipkin, Bateman and Klimas Talk Plus Treatment Updates
- Coronavirus #6: Will COVID-19 Leave An Explosion of ME/CFS Cases in its Wake?
- Coronavirus #7: Records Broken, An ICU Doctor Talks, The Peak is Coming, Hot Spots, Is it in the Air? Dr. Hyams on COVID-19
- Coronavirus #8: The Grand Experiment, Starting Up? Social Distancing – For 2 Years? WHO Did It?
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