You are here: Simmaron ResearchPathogensFrom the Tahoe Outbreak to COVID-19 Dr. Peterson and Simmaron Take on the Coronavirus – and ME/CFS

From the Tahoe Outbreak to COVID-19 Dr. Peterson and Simmaron Take on the Coronavirus – and ME/CFS

“Testing is so important to everyone in our community, especially front-line workers and people who are at higher risk of severe disease. Simmaron is excited to serve our neighbors and lead the way to broader testing, so we help keep Nevada safe and learn more about this outbreak.” Courtney Miller, President of Simmaron’s Board.

Peterson COVID-19

COVID-19 brought Dr. Peterson’s mind back to the first infectious disease outbreak he’d encountered – the 1984 Incline outbreak – which helped introduce ME/CFS to the U.S.

As Dr. Daniel Peterson watched an infectious disease outbreak bear down on his community like a freight train, his mind flashed back to a time, almost over 35 years ago, when a mysterious infectious event had sent scores of sick people to his office.

The pathogen in what became the infamous 1984 Incline Village outbreak, which helped to put chronic fatigue syndrome (ME/CFS) on the map, has never been definitively identified. The inability to identify it has had significant ramifications: the patients weren’t believed and the paltry CDC investigation chalked their symptoms up to hysteria.

Being able to identify the original pathogen could have changed much for those involved and for how the disease was portrayed. Decades later, some of those afflicted still remain ill with chronic fatigue syndrome (ME/CFS). Theirs and Dr. Peterson’s lives took a course change that no one could have anticipated.

Since then Dr. Peterson focused specifically on the post-infectious cohort of ME/CFS patients. He was one of the few doctors to use Ampligen – an immune modulator – and introduced the use of the powerful antiviral Vistide to the field. He brought decades of experience dealing with post-infectious illnesses to the formation of the Simmaron Research Foundation ten years ago.

Report From Paris: Peterson Reports Antiviral (Vistide) Effective in Treating Herpesvirus Infected Chronic Fatigue Syndrome (ME/CFS) Patients

In the decade since, at the core of Dr. Peterson and Simmaron’s research has been a unique collaboration with Columbia University’s Center for Infection and Immunity (CII), led by Dr. Ian Lipkin. CII’s Dr. Mady Hornig is also a member of Simmaron’s Scientific Advisory Board.

Together, they have published 8 peer-reviewed manuscripts assessing the immune response across blood, spinal fluid and microbiota, identifying multiple subsets of ME/CFS and characterizing post-infectious immune patterns. The NIH’s current intramural study of ME/CFS focused on post-infectious patients is an overdue but pivotal, and it turns out timely, acknowledgment of the role of infection in triggering this chronic disease.

Dr Nath Talks on the ME/CFS NIH Intramural Study

Thirty-five years after Tahoe’s CFS outbreak much has changed. We have technologies that can identify a pathogen almost in the blink of an eye. The identity of the SARS-CoV-2 virus hasn’t been in doubt since early January.

Some issues remain however. The low coronavirus testing capability in the North Tahoe region meant that even today many, probably most people infected with the virus, were not going to get tested – leaving them in anxious limbo, tying Dr. Peterson’s hands to some extent, and leaving a key question unanswered.

Catching it in the Act

This time the coronavirus offered the opportunity to catch ME/CFS in the act.

This time the coronavirus offered the opportunity to catch ME/CFS in the act.

That question involved ME/CFS. Peterson knew that COVID-19 – the illness associated with the SARS-CoV-2 virus – was likely to birth an immense ME/CFS cohort. This time the outbreak presented a unique opportunity to catch the process of coming down with ME/CFS in the act. It also presented an opportunity to educate a whole generation of doctors about post-infectious illnesses and ME/CFS.

That could only really happen, though, if Dr. Peterson and other doctors and researchers knew their patients had been infected with the coronavirus. COVID-19, after all, will be taken seriously. The common cold will not. It was critical, therefore, to get people tested.

Just as inadequate testing tied Peterson’s hands almost 40 years ago, shortages in vital test kit components were tying his hands today.

Solving the Testing Snafu

What to do? Dr. Peterson and the Simmaron Research Foundation had formed a strong connection with Coppe Labs – an FDA CLIA certified pathogen testing lab with high-complexity clinical testing status.  The founder of the lab, Dr. Konstance Knox, actually sits on the Simmaron Research Foundation’s Scientific Advisory Board. Dr. Knox has been testing ME/CFS patients for viral infection, reactivation and antibodies for decades.

Coppe labs

Dr. Peterson, the Simmaron Research Foundation and Coppe labs collaborated to bring a new coronavirus test to the North Tahoe region.

Peterson, Simmaron staff, and Knox brainstormed. The nasopharyngeal swabs currently being used to identify the virus were available but the viral media they needed to be placed in was not.  But what about the urogenital swabs being used for some rapid polymerase chain reaction test (PCR) testing? They could be shipped frozen in saline to labs for testing.

An application for an Emergency Use Authorization (EUA) from the Food and Drug Administration to collect and test samples using that technique was granted. So was an application to provide an IgG antibody test.

Gunnar Gottschalk, PhD, Simmaron’s Clinical Research Director and emerging scientist trained by Dr. Peterson, Simmaron and Rush University, led the effort.

“The supply chain crisis has severely hindered the nation’s COVID-19 testing capability. We repurposed materials and sought a creative solution which helped our collaborative team achieve FDA authorization rather quickly for both the PCR and the IgG antibody test. This ingenuity, along with the hard work of our research staff, places us in a position to be the leader for COVID-19 testing in Northern Nevada.”

Over the past several weeks, over 500 people have been tested in the Tahoe area for the virus. Since getting approval, the Simmaron Research Foundation has been seeking local funding to allow it to test economically disadvantaged residents.

This Time It’s Different

This time it’s different.  Many of those sickened by the virus will not have to live in limbo. Doctors will be able to follow COVID-19 treatment guidelines knowing that their patients actually have COVID-19. Doctors will be able to treat patients and track their stages of recovery without being ostracized or looked down up. Simmaron can help elucidate the long term impacts of this virus and use that to inform our understanding of chronic ME/CFS.

This time, if pandemic patients develop ME/CFS, doctors will know they did so not because of an unidentified, usually benign cold virus but because of COVID-19 – a fearsome pathogen we know can wreak havoc on many systems of the body. They won’t be able to sweep ME/CFS under the rug with claims of hysteria, depression or somatization like they did 35 years ago.

Knowing COVID-19 is involved is a potential game changer not just for the patients who have trouble recovering, and the doctors treating them, but for the field of ME/CFS itself. The opportunity exists for this disease to finally be taken seriously.

Finally, it shouldn’t pass notice that simply by taking center stage in the Northern Tahoe COVID-19 testing effort, the Simmaron Research Foundation – which is devoted to understanding and treating ME/CFS – is spreading the word on ME/CFS and publicly rooting it in the science of post-viral disease – something the world is likely soon to become all too familiar with.

To learn more about Simmaron Research’s COVID-19 testing effort:

Email: covid19@simmaron.com
Visit: simmaronresearch.com

To donate to Simmaron Research, visit: https://donatenow.networkforgood.org/SimmaronResearch

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23 Comments

  • JAVEN morell

    June 15, 2020 at 1:53 pm - Reply

    Is Dr. Cheney involved at all with sr. Peterson and his research? I saw him over thirty years ago. Miss seeing his name. Sincerely, hipjaven@gmail.com

  • carol perry

    June 15, 2020 at 5:25 pm - Reply

    Kudos to Dan Peterson on the collaboration. For him, what a long strange trip it’s been.

  • Dakota

    June 15, 2020 at 5:43 pm - Reply

    As always, thank you so much Cort for sharing this.

    Cort, do you mind me asking if Dr. Peterson has ever shed light on what he thinks happened in the 1984 outbreak – specifically if he has any pulse or inkling on a specific pathogen (environmental, etc.)?

    I often wonder why there haven’t been really any reported similar outbreaks/epidemics in the US in the last 29 years (I know Londonville, NY & Yerington, NV were reported shortly after Incline Village) and what Dr. Peterson thinks of that. I find it very interesting that there is almost no records (at least publicly) since about 1990 of similar instances of these reported epidemics that were seen in the 1980’s…

  • Celia Harrison

    June 15, 2020 at 5:46 pm - Reply

    But what about the millions of us who have suffered for so long? What about our destroyed lives? What about all the doctors who abused us? What about the layers of PTSD? In my case DES caused damage to my immune system and drug companies paid off lawyers to sabotage legal cases, what about all those people who for decades have smugly worked to harm so many people increasing suffering sadistically? I was a nurse when I got sick taking care of the sickest people in the community, I was workplace bullied for calling in sick, had economic hardships, was abused by doctors I worked with and had to listen to them make jokes about Chronic Fatigue Syndrome at the nurses station standing there so sick, dizzy and in pain I have no idea how I survived working. I got sick from a very dangerous virus but was not treated like a hero, I was treated like garbage for decades. What kind of a country allows people to be treated this way? I had to by myself, for myself do research to figure out a program to get better. Thank you to everyone who wrote or made videos about what helped them get better.

  • Cort Johnson

    June 15, 2020 at 6:13 pm - Reply

    Dr. Cheney left Incline Village at some point during the outbreak. To my knowledge he and Dr. Peterson have not worked together since then.

  • Cort Johnson

    June 15, 2020 at 6:15 pm - Reply

    No kidding. Another outbreak – but things are different now. Hopefully with all the media coverage of the problems recovering from the virus the NIH will finally start really funding post-viral illnesses.

  • Cort Johnson

    June 15, 2020 at 6:16 pm - Reply

    I don’t know Dakota but I will try and find out. It’s a good time to dig into what happened back then. It was a much different time for both the patients and the doctors involved.

  • Cort Johnson

    June 15, 2020 at 6:18 pm - Reply

    I’ve wondered the same thing Dakota….What happened to the outbreaks? My guess is that they must be continuing in some places.

  • Cort Johnson

    June 15, 2020 at 6:39 pm - Reply

    Hi Celia, it would be nice indeed if some apologies were forthcoming – and maybe they will be. We shall see. Obviously there’s no undoing the past there’s only coming to terms with it. The world was a more ignorant place then – and it will be less ignorant tomorrow than it is today. Maybe our goal now is to make it so that others don’t have to endure similar things.

  • konijn

    June 15, 2020 at 9:03 pm - Reply

    it is like I was afraid of, me/CFS is going to be post viral fatigue? And those who had bad luck to not be able to prove it started with an infection (no bloodwork done) and those who had other triggers are once again left in the dark and the cold.

  • SueAnn Hendren

    June 15, 2020 at 10:14 pm - Reply

    Yes, Celia. All of the above for me, too.

  • Betty Mekdeci

    June 15, 2020 at 10:39 pm - Reply

    I was first diagnosed in 1984. I had been to San Francisco that year. My original diagnosis was chronic encephalopathy and immune deficiency. This was before CEBV, CFS, CFIDS and the latest ME/CFS were put forth as ridiculous names for a very serious illness. My original diagnosis was made by a immunologist/allergist who was doing research with a professor of immunology at our local university.

    I later became a patient of Dr. Paul Cheney off and on for many years. Dr. Cheney told me that the outbreak of CFS actually started in San Francisco and LA.

    In 1986, Dr. Ablashi, working in the Gallo Aids lab, discovered a virus that killed cells so efficiently, they had trouble keeping it alive long enough to study it. When they finally did manage to do this, they found it was killing B cells and named it HBLV (Human B Lympotropic Virus). Later, they discovered that the virus was also affecting T cells so they named it HHV-6. At that point in time, HHV-6 had a suspected prevalence in the population of around 30%.

    How do I know all this? I convinced my original doctor to take blood samples from a local support group members and an unaffected control family member. (This was before we knew that the virus could affect more than one member of a family).

    We waited and waited, but the Gallo lab refused to give us the results.

    At some point in time, HHV-6 was deemed to be the cause of roseola in infants. But, then HHV-6 was split into HHV-6 A and B (very odd). HHV-6 B was estimated to have a prevalence of 80% or more in the population, but no one knows the prevalence of HHV-6 A.

    I have been absolutely convinced that HHV-6 A is the cause of the epidemic of CFC that spread from LA and San Francisco to Truckee and Incline Village.

    I am also absolutely convinced that toxic exposures can cause the virus to reactivate and that HHV-6A in combination with toxic exposures in the Gulf are the cause of Gulf War Syndrome.

    At last a study has been done that finds this exact mechanism for CFS. In a nutshell, HHV-6 A inserts itself into the DNA of some individuals and ME/CFS begins after a sequence of severe environmental exposures, injuries or infections.

    https://health.ucsd.edu/news/releases/Pages/2020-04-27-for-me-cfs-patients-viral-immunities-come-at-lifelong-cost.aspx

    Although this press release above discusses only HHV-6, the actual paper below discusses HHV-6A

    https://www.immunohorizons.org/content/4/4/201

  • Esther Siebert

    June 16, 2020 at 12:43 am - Reply

    Hi Cort, I hope you are staying safe! I have been sick for 34 years now and was in Tahoe during the year before I got ME/CFS. Also, I am currently sick with a respiratory infection for two weeks but have not had a Covid19 test cause my doctor wants me to stay home. Are Dr. Peterson and/or Simmaron offering the chance for long distance testing? My initial virus was EBV and I got sick in 1986. I’d like to know if I have Covid19 and would also like to help contribute to this research. Best, Esther

  • dejurgen

    June 16, 2020 at 7:56 pm - Reply

    @Dakota:
    “I often wonder why there haven’t been really any reported similar outbreaks/epidemics in the US in the last 29 years… I find it very interesting that there is almost no records (at least publicly) since about 1990 of similar instances of these reported epidemics that were seen in the 1980’s”
    I suspect early snow machines. If I am correct the Lake Tahoe area was a ski resort with snow machines using water from a lower and thus warmer lake.
    I have written on the topic before on either simmaronresearch or healthrising with links for those interested. It should be traceable by a good search engine.
    The water from the lower and warmer lake could have had plenty of micro organisms. Some of them have no trouble surviving a very short time of freezing (for example bacteria causing Legionaires disease) or far stronger freezing (viruses, many labs store them in the freezer to keep them longer alive).
    These snow machines create a very fine mist able to carry the surviving pathogens all over the village as a sort of blanket. For any pathogen that can transmit air borne, that’s the ultimate dream.
    Shortly after the Lake Tahoe outbreak, the world learned to know Legonaires disease and the risk of industrial installations using and spraying tiny droplets in many forms. Since then, regulation has been far more strict on all those machines in order to reduce the risk very very much and it’s one of the regulations that seems to be actually enforced fairly well in the industrialized world. With it, the pathogen spreading machines were replaced by far safer ones.
    The same holds for some water evaporating industrial coolers used for example to generate electricity on a smaller scale.

  • RonP

    June 17, 2020 at 2:50 am - Reply

    Lake Tahoe is never warm or cool, in mid summer hundreds of kids on the beach but none to go near the water. However they may have used a smaller body of water, mountain communities have unique systems, some you would not believe. That is were my suspicions went but they must have tested the that?? Ya Think??
    BTW: I just read, many Sars2 patients are still sick after 60 days.
    This does not have FATIGUE in it’s name.

  • Lora

    June 17, 2020 at 2:05 pm - Reply

    Thank you, Cort! Most Excellent Article! I am watching closely at the trials of Leronlimab as a possible benefit to some of our unlying conditions..
    Hats off to both these Drs., Research Ctr. as well All!
    Patient and Preservance is upstanding quality to be Proud of!

  • Sarah LaBelle

    June 17, 2020 at 8:27 pm - Reply

    @Dakota, that was Lyndonvile, New York, where Dr David Bell was the local pediatrician. That out break began in 1985, per the article about Bell on Wikipedia. https://en.wikipedia.org/wiki/David_Sheffield_Bell

  • Dakota

    June 19, 2020 at 4:04 pm - Reply

    Lyndonvile, thank you for correcting me Sarah!

    I just still don’t understand that there were these specific outbreaks in the 80’s….and then all these outbreaks just stopped? What happened? What does Dr. Peterson, Dr. Cheney, Dr. Bell think of this phenomenon? Do they think the symptom presentation from an outbreak patient differs than all of the one-off patients seen in society? Those are the questions/answers I’m curious about.

  • Scotty

    June 20, 2020 at 8:50 pm - Reply

    I believe some have thought that the Incline Village outbreak was due to a moldy environment. I also think I read that the high school in Truckee had mold in it, and that could explain why many got ill. Even if this were true, I don’t believe it would explain the transmission of illness to others that had no interaction with the high school. Does anyone have any thoughts on this?

    • Cort Johnson

      June 21, 2020 at 4:07 pm - Reply

      Mold undoubtedly contributed to some people’s illness but you have to ask if pathogenic types of mold suddenly spread through a community. I’m no expert in mold but I’ve never heard that. Mold can make you very ill but it can’t like viruses be spread from person to person.

  • Dakota

    June 23, 2020 at 12:14 pm - Reply

    Cort, forgive my ignorance, but is it assumed that the Incline Village epidemic was of a community spread (person to person) origin?

    Forgive my ignorance again in asking out loud, but I still don’t understand how it only has been recorded that one year (1984) in Incline Village if it was attributed to mold or environmental, wouldn’t this occurrence be more frequent than just that one breakout..?

    • Cort Johnson

      July 6, 2020 at 4:26 pm - Reply

      I would think so.

  • elisabeth

    June 26, 2020 at 11:17 pm - Reply

    Was deze uitbraak ook in maart 1985 in Nederland? Van sommigen en mezelf weet ik dat ze toen ziek werden en ME kregen