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

SARS CoV

The first SARS (SARS CoV) virus was more lethal but killed less people.

The first SARS epidemic in 2003 featuring SARS-CoV now seems like a poor dress rehearsal for today’s SARS CoV-2 outbreak. With just 8,000 cases in total and 774 deaths, (compared to almost 1,000,000 cases and 4,000 plus deaths and rising rapidly) it seems hardly worth including in the same sentence.

Yet it was a “pandemic” (infecting people in 29 countries) that landed many in the hospital and it had a chillingly high death rate – almost ten percent. The first SARS virus was far more lethal than the second one we’re dealing with now.

A few studies that tracked the survivors suggested that 2003, like 2020 surely will be, was probably a banner year for new cases of chronic fatigue syndrome (ME/CFS) and/or fibromyalgia. That’s no surprise. We’ve known since the 2006 Dubbo study that a severe infection will leave a percentage of those infected with an ME/CFS-like condition.

The Toronto Outbreak

Like the present SARS-CoV-2 epidemic in the U.S. and other countries, the first SARS virus began its spread into Canada long before the authorities realized it was there or moved to stop it.

One woman returning from Hong Kong, who came down with a fever two days later sparked the pandemic in Toronto. She was dead in two weeks. Only after her son died a week later and several other family members became ill was a link made to a new infection spreading in Hong Kong.

A couple of weeks later, Toronto health authorities instituted emergency measures allowing them to track and detain anyone possibly infected. By the time the outbreak was over 345 people had been confirmed infected and 44  had died.

The Survivors

Several studies tracked the survivors. The first one – a year after the pandemic had passed – assessed lung functioning, provided a chest x-ray, had them do a 6-minute walk test, and assessed their quality of life. Most of the participants were health care workers.

All but two had been admitted to a hospital, 16% had ended up in intensive care and 9% had been put on a respirator.

While the lung functioning and chest x-rays were normal, fatigue (60%), difficulty sleeping (44%), and shortness of breath (45%) were common 12 months later. Only 13% said they’d fully recovered.  Eighteen percent demonstrated a reduced walking distance during the 6-minute walk test.

Thirty-seven percent reported significant reductions in their physical health, and 33% reported a significant reduction in their mental health.

After one year, 17% of patients had still not returned to work, and 9% more had not returned to their pre-SARS work levels.

The conclusion of the study was confounding, dismissing the physical deficits and focusing on mental health. After noting the high degree of fatigue, the problems with sleep, the reduced walking distance, the difficulty returning to work in a significant subset in the results, the authors concluded:

“Most SARS survivors had good physical recovery from their illness, but some patients and their caregivers reported a significant reduction in mental health 1 year later.”

A 110-person 2005 UK study, on the other hand, found significantly reduced exercise capacity and health status six months after the infection. Still another post-SARS study seemed strangely eager to put a gloss on the aftermath of the epidemic as well.

Despite reporting in the results that people aged over 40 experienced significantly reduced “health-related quality of life” over “multiple domains”, and that reduced lung functioning was associated with reduced SF-36 (functional scores) and a lower score on the walk test, the authors concluded that:

“Patients had good recovery of pulmonary function and HRQoL.”

Eight Years Later – Moldofsky’s Fibromyalgia Post-SARS Study

University of Toronto professor Harvey Moldofsky was under no such illusions. A kind of an unsung hero in the ME/CFS and FM world, Moldofsky has been exploring the sleep, pain and fatigue connection in FM, in particular, over the past 30 plus years.

In 2011 – 8 years after the SARS outbreak in Toronto – Moldofsky published a study “Chronic Widespread Musculoskeletal Pain, Fatigue, Depression and Disordered Sleep in Chronic post-SARS Syndrome; A Case-Controlled Study” comparing 22  post-SARS patients with fibromyalgia patients and healthy controls.

The Forgotten

The SARS threat long over, the medical world had moved on to focus whatever the next emergency was – cancer, heart disease, diabetes, Alzheimer’s, etc. leaving behind the SARS survivors to manage as best they could.

SARS patients unable to work

Eight years after the outbreak in Toronto a group of 50 former healthcare workers remained unable to work

Eight years later, noting that a group of 50 health care workers were still unable to work and were experiencing “musculoskeletal pain, profound weakness, easy fatigability, (and) shortness of breath that accompanied psychological distress” Moldofsky, a sleep researcher, dug deeper.

After assessing their physical and mood symptoms, Moldofsky put post-SARS survivors through a sleep study.

Results 

Moldofsky found, as he suspected, that the post-SARS patients looked very much like ME/CFS and FM patients. Along with the disabling fatigue and pain came non-refreshing sleep, more arousals at night and the mysterious alpha-wave intrusions that often disrupted sleep in the two diseases. Moldofsky also found a delayed entry into REM sleep and increased stage 2 NREM sleep.

One difference did stand out – the post-SARS patients experienced more fatigue and less pain than the FM patients did; i.e. they looked a bit more like chronic fatigue syndrome patients than FM patients.

Moldofsky came up with two possible explanations for the long term disability he saw: psychological trauma from the illness and the direct effects of the virus itself.

Noting that studies indicated the virus is able to spread throughout the brain including the hypothalamus, Moldofsky proposed the virus had produced a chronic neuroinflammatory state affecting sleep, pain sensitivity and energy levels. That hypothesis, of course, is identical to similar ones proposed for ME/CFS and fibromyalgia.

Ending the paper Moldofsky asserted that:

“A longer term, large scale study is needed to establish the contribution of epidemic and pandemic viral disease to the disordered sleep, chronic fatigue and somatic symptoms of chronic fatigue/fibromyalgia syndrome.”

While the 1918 flu pandemic involved the flu – not SARS-CoV-2 –  recovery was so often contracted that it spawned a syndrome known at the time as “encephalitis lethargica”.

The Present SARS Pandemic

That study has never been done, and now here we are with another potential nervous system infecting coronavirus.

SARS-CoV-2 virions

COVID-19 presents a unique opportunity to catch the emergence of post-infectious illness in its tracks.

Avindra Nath at the NIH reported that the virus can cause multiple central nervous system problems (dizziness, headache, impaired consciousness, epilepsy, meningitis, encephalitis as well as delirium, hallucinations, mood disorders, hypomania, anxiety, depression). (It can also hit the peripheral nervous system causing loss of smell, taste problems, neuralgia and muscle injury.)

According to one report, Nath stated that patients with multiple sclerosis, myasthenia gravis, dermatomyositis who are on immunotherapy are at higher risk of developing corona infection.

Severe Infections Found in Younger People

The virus’s lethality for older people is well-known but less well-known are the devastating effects it can have on the young and healthy. While they’re not dying at the rate of the elderly, younger people appear to be being hospitalized at a torrid clip.

Governor Cuomo recently reported that over 50% of coronavirus hospitalizations in New York City are between 18 and 49 years of age.

With models predicting millions may fall ill in the U.S. alone, the emerging SARS-CoV-2 cohort presents an immense opportunity to understand chronic post-infectious illnesses that will (hopefully) not come again.

Since studies indicate that the severity of illness greatly increases the risk of coming down with a post-infectious illness, the high numbers of younger people being hospitalized for COVID-19 suggests considerable numbers of people in the prime of their lives may have an ME/CFS-like illness in their future.

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.

Avindra Nath reported that “a lot of people have been asking about post-viral syndromes”, that it would be good to follow the many “postviral immune mediated diseases” (including ME/CFS), and that attempts are being made “to develop nationwide databases”.

Vicky Whittemore reported that the NIH has recognized a huge problem may be brewing, and that an opportunity exists to learn about post-infectious illnesses. She started talking about post-COVID-19 infection illnesses (e.g. sequelae) with Joe Breen and others at NIAID a couple of weeks ago, and have heard from several researchers who are interested.

Whittemore suggested that everyone who tests positive for COVID-19 get on a COVID-19 registry and she mentioned this one. (There may be others.)

It’s possible that ME/CFS holds clues to what hundreds of thousands of people may be experiencing over the next year and onwards. It’s clear that those having difficulty recovering from COVID-19 will hold clues to what has been happening with us as well. A vigorous research effort to understand their plight should provide a boon for us all.

The dark cloud that is the coronavirus could produce a silver lining after all.

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28 Comments

  • Liz

    April 2, 2020 at 1:21 pm - Reply

    Thank you Cort! This is all I can think about these days. There are already 1 – 2.5 million ME/CFS patients in the U.S. What a tragedy that we seem to need more to get the attention of the NIH!

    • Cort Johnson

      April 2, 2020 at 6:50 pm - Reply

      So true Liz. Here we have a huge cohort of people many of whom have a post–infectious onset. This kind of inattention, not just to ME/CFS, but to the long term effects of infections has been going on for a long, long time yet the long term effects – chronic illnesses for decades – are devastating in so many ways.

      Maybe they will wake up. Maybe so many people will have trouble recovering that they will HAVE to wake up.

  • Jean Sucec

    April 2, 2020 at 4:22 pm - Reply

    And I had just said this to a friend about 5 days ago, and here you state a lot of what I said because I DO understand viruses and what they do, and I for sure understand ME//CFS after having my life ripped out from under me 26 yrs ago and was diagnosed even by Dr. Bell as being in the top 2% of patients seen with ME/CFS and that was back in 2007 when I saw him What these virus’s do to the health of one’s body (and I was very healthy prior) and for sure do to the Central Nervous System, is horrible. I hope this Coronavirus and it entering through the sinues have given you a lot of new information on how many ME/CFS patients got sick like myself! Multiple viruses’ and bacterial infection all were found in my sinues and had acute sinus infection. Went into sinus surgery, and once they opened this up, they multiplied and spread even more and I became profoundly sick with pneumonia then and finally had to be put on an anti-TB drug just to clear my respritoary system. PLEASE do research more on why we got sick and how many people had sinus infections and things airborne causing these.

  • Joan

    April 2, 2020 at 6:27 pm - Reply

    Hi Cort

    You might be interested in this from The Lancet – Neurology published online April 1, 2020

    “Guillain-Barré syndrome associated with SARS-CoV-2 infection: causality or coincidence?”
    https://www.thelancet.com/pdfs/journals/laneur/PIIS1474-4422(20)30109-5.pdf.

    Be safe

    • Cort Johnson

      April 2, 2020 at 6:46 pm - Reply

      There you go…A possible “sequelae” of the infection showing up. One thing is for sure – this virus is getting enormous attention. Thanks Joan.

  • ihodgson

    April 3, 2020 at 5:41 am - Reply

    Guillain-Barré syndrome was also a consequence of the zika virus. The best explanation of ME/CFS is as a sequelae of a viral infection but no specific virus other than the Epstein Barr and glandular fever. So I do suspect that it may trigger ME/CFS in some of the infected people. I note that some of the Chinese researchers are saying that fatigue is an ongoing problem for many who have recovered – but its early days.

  • Yocheved A

    April 3, 2020 at 3:22 pm - Reply

    I’m 54, and have moderate to severe ME. I also got the virus ahead of the curve. I was sick for over a month and a half, but because of a shortage of tests, combined with a lack of knowledge about the virus, I was told “it’s just the flu”. Good thing I self isolated anyway! (Not that I felt like going anywhere.)

    I am getting really annoyed with the people who have been sick for 3 days, and are whinging “Oh, this is the worst thing EVER!” and then they’re over it by the end of the week.

    Something that no one is talking about, is that the virus exhausts your immune system, and leaves you wide open for all kinds of secondary infections. People need to be aware that just because they recovered from the virus, doesn’t mean they are free to go.

    • Cort Johnson

      April 3, 2020 at 5:09 pm - Reply

      Thanks for sharing Yocheved. It sounds like you’ve gotten over it and it took about 6 weeks which is what Dr. Klimas thought might be typical for people with ME/CFS.

      Interesting about the immune exhaustion – which Simmaron studies (http://simmaronresearch.com/2016/03/are-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-immune-exhaustion-disorders/ ) suggest is happening in longer duration ME/CFS patients. From reading I know the virus can leave the door open, in more severe cases, for bacterial invasion of the lungs (bacterial pneumonia) in healthy people.

      Dr. Klimas has provided some suggestions about way to metabolically bulk up the immune system. See her video on Youtube.

  • Cort Johnson

    April 3, 2020 at 4:55 pm - Reply

    Besides infectious mononucleosis, Coxiella burnetii (Q fever), or Ross River virus (epidemic polyarthritis) (https://pubmed.ncbi.nlm.nih.gov/16950834/?from_term=dubbo+chronic+fatigue+&from_sort=date&from_pos=4), giardia (https://pubmed.ncbi.nlm.nih.gov/30767352/?from_term=giardia+chronic+fatigue+&from_sort=date&from_pos=5), pumila virus, (https://pubmed.ncbi.nlm.nih.gov/31081420/?from_term=post-infectious+illness+&from_sort=date&from_pos=4) have produced post-viral illness states that look very much like ME/CFS.

  • Cort Johnson

    April 3, 2020 at 5:05 pm - Reply

    Also Borrelia – post-Lyme Treatment Syndrome (https://www.cdc.gov/lyme/postlds/index.html) patients who have had the proper treatments, apparently have beaten off the virus – and still have an ME/CFS-like illness.

    Even Ebola – if you check out recovered Ebola patients you will find increased headache (47.6% vs. 35.6%), fatigue (18.4% vs. 6.3%), muscle pain (23.1% vs. 10.1%), memory loss (29.2% vs. 4.8%), and joint pain (47.5% vs. 17.5%). – https://pubmed.ncbi.nlm.nih.gov/30855742/?from_sort=date&from_term=Nath+A&from_cauthor_id=32235173&from_page=8&from_pos=7

  • Christopher

    April 3, 2020 at 9:33 pm - Reply

    Cort,

    Thank you! This article is informative and means so much to us that suspect a caused our long term illness.

    Does this remind you of something?

    Just a thought, but, didn’t you once compose an interesting article on a ‍⚕️ in Chicago, “Lenny” something ‍♂️? Didn’t he freeze healthy college students blood pre-mono infection? Then go on to take samples on the same donors post-mono?

    I propose this when it comes to long term study of COVID-19 and reoccurring fatigue, pain, respiratory distress, diminished cognitive function, SLEEP issues:

    Experiments using the following:
    1) HEALTHY donors bloodwho won’t/CAN’T practice physical distancing, pre- infection, freeze .
    2) Same donors post, test + , .
    3) Same donors 1/3/5/7/10/15/20/25/30 years post initial + infection, . ‍♂️

    STUDY, STUDY, STUDY, and note differences not influenced by physiological aspects of aging!

    On another note,
    How is your LDN journey going? I’m on day 30 now. I won’t quit!

    You are an inspiration to us all Cort! Thank you! True inspiration. Exceptional journalist!

    Samuel Johnson once said:

    “Knowledge is of two kinds, we know it ourselves or we know where to find it.”

    I FIND it here brother!

    Oh, you get one more thank you. I recently had a telemedicine appointment. My doctor prescribed 50mg of Trazadone for better sleep . I shared your article with him! I slept great last night!

    Trazadone worked after 30 minutes of ingestion. LDN, on the other hand, well…

    LDN is a strange drug. Asked my ‍⚕️ to put me on the “Norwegian Protocol” (4.5mg one day/night) after experiencing little improvement at lower dosages for the last 30 days. LDN has NOT been easy! . But, I believe the interim mild suffering it sometimes causes me will one day lead to a huge endorphin boost I desperately need. I’m NOT looking for an immune modulator at a low LDN dose. I have leucocytosis. I am extremely interested in a full 50 mg dose of Naltrexone if titrating up from 9mg a day doesn’t work. I think you composed an article about this too, no? I will also gradually restart amino acid and cofactor uptake in an effort to improve , gut, immune system symptoms- primarily those affecting mitochondrial energy production, gut symbiosis, and cognitive function ( neurotransmitter production enhancement and efficiency).

  • MaggieL

    April 4, 2020 at 11:39 am - Reply

    Cort and Coxsackie B infection was what knocked me over in 1978. Fortunately for me our Infectious diseases Hospital was still open here in Melbourne at the time and I got definitive diagnosis. BUT a young family and heavy workload saw me trying to get back to my busy LIFE!

    But no 6 months later my body completely crashed into ME/CFS and never recovered.
    And yes I was a frontline worker nursing in a busy Childrens ward at the time of my infection so I really feel for those of us who also stand on the frontline today

  • Paolo Maccallini

    April 4, 2020 at 3:04 pm - Reply

    Hi Cort,

    thank you for this blog post, very interesting, as always. I would like to note that Encephalitis Lethargica was probably not due to the pandemic flu, despite they appeared in the same period. The causative agent of EL is still a matter of debate. Recently an enterovirus has been found in the samples from those who died of EL (Dourmashkin, RR et al. 2012). Two previous good references are the book by Oliver Sacks, “Awakenings”, and a 2010 book by Joel Vilensky, “Encephalitis Lethargica, during and after the epidemic”.

  • Cort Johnson

    April 4, 2020 at 7:46 pm - Reply

    Thanks Paolo for the update. I got the EL anecdote from Barry’s 1918 Flu book but it sounds like the science has moved on.

  • Cort Johnson

    April 4, 2020 at 7:47 pm - Reply

    Darn – if only so many of us had known to be more careful.

  • Cort Johnson

    April 5, 2020 at 8:11 pm - Reply

    Check out Courtney Craig’s take on whether the ME/CFS commnunity is going to get much larger.

    https://www.drcourtneycraig.com/blog/2020/3/23/is-the-mecfs-community-about-to-get-larger

  • Maschelle Mashburn

    April 6, 2020 at 12:54 pm - Reply

    I am consistently taken back to a severe viral illness that hit my lungs and produced a fever over 103° when I reflect on the timing of onset of my FMS/ME/CFS cluster of undeniably startling symptoms that doctors, unable to find an abnormal blood test, attributed to an anxiety disorder.

    Out of the blue.. I simply developed a horrific anxiety disorder with no stressors in my life. I also could no longer blow up a balloon (3 young children with birthday parties circa 1980’s = balloons and mom in charge of them.

    It was a startling new thing. New difficulty concentrating and organizing had me writing lists to keep me on task throughout my day.. and short-term memory loss so severe I’d check the locks 4 or 5 times a night. I couldnt remember having checked them.

    I had shortness of breath, chronic bronchitis (not a smoker) and a persistent wheeze and wracking cough that had me wearing a rib belt for years after I tore connective tissue and cracked 3 ribs coughing. Headaches with muscles cramping and twitching with severe photosensitivity (without actual migraine) laid me out, sleeping, for 5 days at a time began and happened so frequently I had a prescription for muscle relaxers and pain killers (allergic to anti-inflammatory meds across the board) for those horrible “attacks”.

    My hands couldn’t grip and hold onto things and would swell and put off palpable heat from repetitive motion injuries. I couldn’t bend my legs, reach forward or bend forward without triggering muscle cramps so severe I’d be sore for a week minimum after getting the cramp to let go.

    I slept day and night but wasn’t depressed and wasn’t refreshed. A sleep study years later showed skipped restorative stages of sleep, 47 awakenings with no recollection of having woken up and CNS Apnea lasting long enough to cause blood oxygen desaturation to 87% before I’d gasp for air. My muscles in my cheeks were too weak to allow a BiPap.. they’d puff out from the pressure of the air and I’d swallow it.. distending my stomach causing me to wake feeling like I was going to vomit only to burp upon sitting up for so long I couldn’t inhale… and I needed to!

    Night terrors with full on hallucinations. Dreaming when I looked to be awake and talking nonsense to the person/thing in my dream.. eyes wide open and the confused family member talking to me totally visible to me.. as was the subject in my dream. Both existing in the same moment in my consciousness (?).

    Extremely exaggerated startle reflex. Pounding, skipping, racing heart with severe shortness of breath (147 bpm resting, 160 standing in place) led to Beta Blockers I’m still taking 30 years later. Walking felt unnatural.. something I had to concentrate on. I began walking toe/heel instead of heel/toe. Difficulty swallowing.

    Unable to regulate my blood pressure and temperature. Both would be abnormally low. My skin was not healing after, say, stitches. I have so many scars from needing stitches and the wound popping open after the stitches were removed. When my doctor tried to leave the stitches in longer to allow for healing my skin would grow over the top of the stitches and they did not have dissolvable stitches at that time. I got tendonitis constantly.

    This all came on at once remember. It was not a gradual process. I couldn’t handle noise and I was used to juggling three children and a husband being a housewife and taking my job very seriously as a nurturer and homemaker as we’ve agreed When we married.

    I began having horrible problems with my gut. Painful painful cramping and being up in the restroom all night to the point I was fall asleep on the bathroom floor because the cramping was so bad I was afraid to leave the restroom. I even had problems with bleeding and had my first colonoscopy before I was 30 years old. They found inflammation. It hasn’t improved with time and that makes it nearly 29 years all of this has been going on.

    Also profuse sweating and hot flashes when I was not in menopause and then chilling. I have cysts all over my body which is part of what started all of the stitches. It was for removal of fist as they came on one after another and now I’m just one big lumpy person with cysts all over me.

    Emotionally I became unstable and cried very easily which goes on to this day and frustrates me as much as it does everybody else. My emotions are strong. They’re too strong now. I laugh louder than anybody else I know and I Cry just as fast and just as hard as I laugh. The extreme emotions I got everybody excited about thinking I suddenly had become bipolar in my late 20s early 30s and now we’ve decided that it’s actually the push/crash cycle of ME/CFS.

    I suddenly forgot how to ride a bike and couldn’t concentrate when my children or my husband was trying to talk to me. It traumatized my oldest child thinking suddenly I was uninterested and led to a big rift between my husband and I. After 17 years my marriage was so damaged by all of these symptoms that were affecting me in so many ways and me with no diagnosis, my husband had enough and we divorced. I tried to return to the workforce and found that I couldn’t concentrate or learn new things. I couldn’t keep a job. I was so confused in the simplest of jobs.

    Every single one of those things happened overnight and it was post-viral most definitely. I have no idea what the virus was but I do know I have scar tissue in the bottom lobe of one lung from the severity of that Viral attack on my lungs. Is one night I really bought into what the doctors are trying to tell me that it was some kind of anxiety or personality disorder. they were supposed to have the answers and I trusted them blindly until the time of the personal computer and then later Google came about and I was able to research as I became more and more debilitated and was studying fibromyalgia / my neurologist suggestion to see if it fit the symptoms I was having with muscles and weakness and pain. that’s how I found out what ME/CFS really was.

    I have been totally alienated from every person I’ve ever loved accept my daughters because they were younger when this happened and they know mom has always been like this as far as they can remember. but family members that didn’t live with me like my mother my brother my ex-husband all suspected an underlying drug or alcohol addiction when I was actually a teetotaler.

    It has been a very emotionally abusive experience and it’s taking its toll. I have no friends because they think I’m flaky and rude from Olive the things I’ve had to cancel and the things I forget that are very important to other people just like they are to me but my memory is so bad even writing it down now doesn’t help. I’ve said before the problems I have with reading and writing as well as speech when there’s too much going on around me or I’m becoming exhausted from having done too much and the tears always come when that’s going on.

    I don’t know how any doctor could think a sudden onset of so many things at once after being so so ill with a huge impact from a virus that attack my lungs and only my lungs well as well as body temperature because I did have that high fever.

    I wanted to just say all of this because it’s clicking for once in a fluid way at a time when it’s going to be very important to see how people are affected after the Coronavirus and if, after they recover from the Coronavirus, they develop all of the weird all at once.

    This is a terrible thing to have and I really hate the thought of people, how do you say it, coming down with this? How do you come down with ME/CFS and how do you catch it? this is a really unique opportunity to try to stop this thing in it’s tracks( if people come down with it) by having them go to bed and stay there for the first few years. there has to be a way to stop people from getting worse while the cytokine storm calms down.

    • Cort Johnson

      April 28, 2020 at 9:44 pm - Reply

      Wow Maschelle you have been through the wringer and yet here you are! Let me acknowledge you for your strength in all of this. I recognize so many symptoms. They are all of a piece including that weird emotional instability (which I think must be linked to the autonomic nervous system).What a strange thing. Let’s hope the medical world finally takes note of what a infection can do. I can’t help but think that anyone would be moved by your description.

      Thanks so much sharing in such a poignant fashion what ME/CFS has been like for you.

  • Joan

    April 9, 2020 at 5:33 pm - Reply

    Good morning, Cort.

    I thought this article on the Covid-19 and anticytokine therapy interesting . There may be some protection from Covid for those with immune mediated disorders who are on cytokine blockers.

    https://www.thelancet.com/pdfs/journals/lanrhe/PIIS2665-9913(20)30092-8.pdf

    and also the one describing actions being taken by rheumatologists during this Covid crisis.

    https://www.thelancet.com/pdfs/journals/lanrhe/PIIS2665-9913(20)30091-6.pdf

    A quote from the above article – “COVID-19 seems to be most fatal when it triggers a cytokine storm.”

    Cytokines are considered to be implicated in CFS/FM.

    It will be interesting to see the rheumatologist’s findings.

    On another topic, after years of lack of sleep, I sleep pretty well most nights now e.g. 7 hours undisturbed. I still experience and am limited by CFS/FM fatigue and general soreness but have not had any muscular pain for about a year. I attribute both of these improvements to a reduction of stress in my life and an ongoing healthy lifestyle, or as healthy as I can make it with my limitations – an anti inflammatory low carb diet, exercise (a very simple routine and walking, or even just movement of any kind), as I can do it, dealing with stress, practicing a positive outlook. I do believe that retraining/resetting the limbic system will help most of us. For medication I use, levothyroxine (by necessity), low dose Luvox. and some supplements. Robax works best for muscle soreness for me

    When I first got CFS/FM over 25 years ago, I was, at times, in severe pain, severely fatigued, muscularly weak, subject to PEM, had insomnia, muscular sore points, brain fog, gut issues… I was off work for two years. I am not over all of these but I am better in every regard. Of course, in the meanwhile, I am also more than 25 years older, which increases limitations apart from CFS/FM. I believe that extreme self care (mental and physical) can help most of us.

  • Deborah Cunningham

    April 13, 2020 at 8:57 pm - Reply

    Any opinions on what the relationship is of ‘cytokine storms’ to all this?

    • Cort Johnson

      April 28, 2020 at 9:35 pm - Reply

      Cytokine storms appear to be causing the worst cases of COVID-19 – leaving patients on ventilators or worse. Being on a ventilator is known to produce significant side effects similar to those seen in ME/CFS – so yes, the cytokine storms should be leading to many ME/CFS cases down the road.

  • Sean

    April 27, 2020 at 3:07 pm - Reply

    Did anyone check the blood types of the people who develop CFS? Could these people be rhesus negative? The virus is created in a lab & they usually use rhesus macaque monkeys, which (i think) would create a immune response in a person with rh- blood type

    Also are there any good supplements to take to help w the sleep cycle issue?

  • GEA

    April 29, 2020 at 12:45 pm - Reply

    Why does it appear likely that the Covid-19 current coronavirus pandemic caused by the ssRNA SARS-CoV-2 virus could trigger a worldwide spike in CFS/ME in the coming 6-18 months?
    https://lnkd.in/gsJqMtT

    • Cort Johnson

      May 3, 2020 at 9:10 pm - Reply

      Because ME/CFS is often triggered by infections and this is a big new infection.

  • martin

    May 24, 2020 at 11:52 am - Reply

    I had a relapse for 3 days after recovering 13 years ago. It included mild fatigue and jerking awake at night and some tinnitus. So I looked up CFS again and see that Dr Byron Hyde reckons ME is caused by an enterovirus infection which causes vasculitis injury to two parts of the brain. CFS are cause by a variety of other pathogens. ANyone know if there is any truth in this? As my Post Viral Fatigue Syndrome came down 6 months after a viral infection I don’t see how this can be myself and I am more with the portuguese guy’s smoldering infection theory on here somewhere. But Hyde has a new book out explaining his findings with images of his patients scans and stuff he says. Can anyone say anything about this enteorvirus theory causing a brain vasculitis and ME?

  • angela

    July 16, 2020 at 8:49 am - Reply

    Im hoping that this terrible pandemic will trigger governments to commit to researching FM and CFS so that those of us who have been suffering for years / decades are finally helped.