Hey, RFK, what if this was considered one of your loved ones?

On July 24, 2024, John examined optimistic for Listeria, whereas within the ICU. John’s pattern was genetically linked, by Complete Genome Sequencing, to a cluster of Listeria related to potatoes from Mexico.

Determine: SNP-tree of sequences of REP pressure uploaded to the general public sequence repository at 
NCBI.

On July 16, 2024, John was admitted to the hospital with a headache, facial drooping, dizziness, and an irregular MRI. His household feared he was having an aneurysm. 

Every week later, on July 22, 2024, John was intubated and sedated within the ICU, the place he remained for 5 weeks, combating for his life towards bacterial meningitis attributable to Listeria. 

When John was first admitted to ICU, he had been hospitalized for per week with signs; it took one other three days of testing to find out that Listeria was the reason for his sickness. John was on a ventilator and a number of IV drips to maintain him alive within the ICU. He was comatose and unresponsive for not less than per week. At one level, he was so swollen with fluids and meds, he couldn’t even shut his eyes. 

After roughly 5 weeks within the ICU, John was transferred to a rehab hospital for long run acute care (LTAC). He was minimally attentive to his household for the primary a number of months in LTAC. He remained unable to maneuver, converse, swallow, or see with out double imaginative and prescient. He developed strain wounds that required critical care , together with a specialised mattress. He remained on the IV antibiotic drip for 12 weeks, till blood examined decided that the micro organism had been killed; nevertheless, the large results of the an infection included a number of abscesses in his brainstem and cerebellum, and his mind was left swollen and infected. 

John remained on the ventilator till the top of November 2024. He was solely in a position to sit in a wheelchair, propped with pillows for half-hour at a time. John began to obtain PT, OT, and speech remedy. Throughout this time, John encountered a number of infections together with UTIs, bronchitis, and pinkeye. 

John spent eight months on the rehab hospital and continued to enhance very slowly and to regain some power. However the harm was obvious, as his spouse particulars: 

He made good points in communication, nevertheless it grew to become obvious that his cognitive notion and character had been affected by the harm from the Listeria an infection. It’s devastating to see the one you love undergo a lot and devastating on an entire completely different degree to attempt to assist and have them hallucinating that you’re another person and there to hurt them. To see my husband, my accomplice in life, have each a part of his physique and thoughts affected  is one thing I’ll by no means unsee or unfeel. 

In March 2025, John was transferred to expert nursing, nevertheless it shortly grew to become obvious that this was not the correct degree of look after him. In three weeks on the facility, EMS was known as for John thrice; twice, he had pulled out his personal trach tube as a result of it had develop into clogged with secretions and he couldn’t breathe, and as soon as as a result of he had fallen and not one of the nurses might carry him. John’s psychological well being deteriorated as properly, with him saying he felt uncared for and like he was left there to die. Subsequently, as a result of a scarcity of nursing care, John ended up within the ICU with pneumonia, the place he stayed for 10 days and, as soon as once more, almost died. He was discharged again to the rehab hospital, to start out the cycle another time—LTAC, rehab, after which insurance coverage pushing him out the door to expert nursing. His spouse writes: 

I fear and analysis consistently about the place John will be positioned and the extent of care I can get for him. He requires help to  stroll, bathe, costume or handle himself. He’s on a feeding tube as a result of he can not swallow with out aspirating. He has tracheostomy that could be everlasting in addition to the feeding tube. He can converse however may be very obscure initially, as half of his face stays paralyzed. He can not write as a result of lack of superb motor expertise, and he can solely learn with issue as a result of double imaginative and prescient. He was not too long ago identified with Cerebellar Cognitive Affective Syndrome, for which there’s not therapy and no remedy. John’s long-term reminiscence stays intact, however his short-term reminiscence, emotional regulation, and impulse management are all affected. 

John has by no means made it residence since being admitted to hospital care final July. He might by no means make it residence, as his medical wants, each bodily and psychological, stay advanced. John is a beloved, profitable, vibrant, wholesome, clever and opinionated man who headed up a household and a enterprise. John is the Chief Inventive Officer, CEO, and founding member, of our enterprise. Coming to phrases with the adjustments in our enterprise construction and ensuring we’re nonetheless offering the identical ranges of pondering and execution has been an almost full-time job, past managing John’s care. Fortunately, John’s considerate management previous to his sudden disappearance gave us an efficient blueprint to maintain going and sustaining our degree of efficiency, however to say that this time has been tense is frankly the understatement of the 12 months.  I solely sleep as a result of I’m too mentally exhausted to remain awake at a sure level. 

Primarily, our total life has been dominated and utterly turned the wrong way up by John’s sickness since he was admitted. I’ve struggled to be a mother or father to our 15-year-old son whereas my hours (actually and mentally) are dominated by managing John’s care. I fear for my son’s psychological well being whereas attempting to take care of my very own and to be an engaged and concerned mother. 

The model of the husband, father, brother, buddy, uncle, and boss all of us knew, beloved and trusted is gone. A shadow model of John stays in place, and due to the complexity of his medical wants, we don’t know for the way lengthy. It has been harrowing to observe him undergo for the higher a part of a 12 months now. He has mentioned he wished he had died final July. What does one even say to that? On the time I used to be so grateful  that John lived… however seeing how depressing he’s now, I don’t really feel grateful in any respect. I really feel that my finest buddy and husband John did die then, and I’m a widow to a residing individual… and that may be a really terrible place to exist for each of us.

Almost one 12 months later we’re nonetheless looking for the conclusive hyperlink between John’s devastating Listeria sickness and all of the others unwell and sure Mexican potatoes.  Query?  The place is our FDA and CDC and the State of Texas within the investigation?

Complete genome sequencing (WGS), which determines the total nucleotide sequence of a bacterium’s genetic make-up, is now the gold commonplace for laboratory surveillance and investigation of outbreaks of foodborne infections.

With WGS, outbreaks are detected quicker when they’re smaller, and extra outbreaks are being solved and managed than ever earlier than. WGS has an unsurpassed excessive decision by detecting adjustments on the degree of the constructing stones of the genetic code of the micro organism. The decision is so excessive that small variations could be noticed inside a single bacterial pressure and subsequently a pressure by WGS isn’t outlined by one sequence however somewhat by a gaggle of extremely related sequences, e.g. differing from one another by as much as 10 variations. Biologically, micro organism with related sequences doubtless share a current widespread ancestor. Alongside the identical traces, it’s a fundamental assumption in outbreak surveillance that micro organism with very related sequences doubtless come from the identical supply even when collected over prolonged time intervals.

Very quickly after WGS was launched within the surveillance, meals security specialists realized that outbreaks with only a few instances may happen over lengthy intervals, typically years. The time period “low and sluggish” was launched to explain these outbreaks. Nevertheless, even now the meals security authorities hardly ever actively search for these outbreaks. They examine them once they accidently stumble into them when isolates from a meals or the meals atmosphere match isolates from historic sufferers, or affected person isolates in present outbreak investigations match seemingly sporadic instances from years in the past. An instance of the latter is the Listeria outbreak linked to Blue Bell ice cream in 2015. 

It’s well-known that bacterial strains might persist for years within the meals manufacturing methods and that such contamination has prompted outbreaks. For instance, a specific pressure of Salmonella Enteritidis prompted two outbreaks related to almonds from California within the Nineties, which result in the implementation of obligatory fumigation of almonds for human consumption. A pressure of Salmonella Newport prompted outbreaks yearly within the 2000s related to tomatoes produced within the Delmarva area. A newer instance is a pressure of Shiga toxin-producing E. coli inflicting a number of outbreaks related to produce grown within the South Western US. Scientists on the Middle for Illness Management and Prevention (CDC) got here up with a reputation, REP-strains (wanting Repeating, Rising or Persistent) for such strains. REP-strains might trigger outbreaks with completely different meals automobiles if the last word supply is outdoors the meals manufacturing methods (e.g. the latter E. coli outbreaks) or with only one car if a selected manufacturing system has been contaminated (e.g. the Salmonella outbreaks).

After the implementation of WGS it has  been realized that some REP-strains might trigger ‘low and sluggish’ outbreaks which can be neither detected nor investigated as a result of the outbreak alerts are weak and the sicknesses are too unfold out in time to be caught by the detection  algorithms utilized by the general public well being authorities. This can be a disgrace, as a result of a REP-strain downside that appears small in a one-year time-frame could also be a giant and vital public well being situation that must be addressed if it persists for years. The wealth of sequence information  within the GenomeTrakr community within the public sequence repository, SRA, on the Nationwide Middle for Biotechnology data (NCBI) might simply be used to detect such giant “low and sluggish” outbreaks.

Lately, scientists found a REP-strain within the SRA, when engaged on John’s case.  They had been checking sequences of Listeria monocytogenes and found a gaggle of 130 extremely associated sequences submitted to the database between 2016 and now (Desk and Determine).

These sequences confirmed as much as 23 variations (“SNP-differences”) between them with a mean of simply 6 SNPs, a distinction that’s typically seen in Listeria outbreaks. 97 sequences had been from human medical isolates within the US submitted by PulseNet USA and 33 had been from potatoes (32) and an apple (1) submitted by the Mexican Service for the Nationwide Well being for Meals Security and Meals High quality (SENASICA) with meals origin listed as USA. Distribution of sequence submissions by 12 months is seen within the desk beneath.

Desk: Listeria isolates of REP pressure submitted the general public sequence repository at NCBI by 12 months and supply.

The distribution by 12 months peaked between 2017 and 2022 from a low begin. Since 2022 there was just a few infections yearly. Two sequences have up to now been submitted in 2025. Sadly, the state distribution of the medical isolates isn’t offered within the database. CDC or the Meals and Drug Administration (FDA) has not talked about something about outbreaks or outbreak investigations associated to this REP-strain on their web-sites, so it’s unclear if they’ve ever investigated it throughout one of many peaking years or over the entire time-period. That is odd, for the reason that whole variety of instances is excessive and 32 of the sequences originate from a possible meals supply. That is absolutely a possible long-lasting outbreak that needs to be investigated. 

The assets to the CDC and FDA, significantly affecting worldwide actions, have been drastically lowered this 12 months. Whereas the administration suggests these cuts handle inefficiencies with out compromising core capabilities, meals security scientists dispute this declare. Investigating the cluster with this REP-strain might present vital clues to settle this dispute testing the businesses’ capabilities in home and worldwide outbreak investigation and administration, highlighting the significance of sustaining strong meals security applications.

Hey, FDA, CDC and State of Texas.