On rare instances when Medinah steps outside her residence, individuals nearby tend to cough, sneeze, and rub their eyes.
“I am the allergen,” shares the 23-year-old, preferring anonymity, with Sky News.
She belongs to a group of individuals affected by a condition so uncommon that it lacks an official medical designation.
It is simply referred to as People Allergic To Me – often abbreviated to PATM.
Medinah dedicated a year to searching online for her symptoms before discovering social media support communities and the term that had emerged there.
Throughout those months, she feared she was “losing her mind”: “I thought, yes, I’m going crazy now. But after a year of constant reactions from people, I finally understood this cannot be imagined, I can’t be insane, I’m witnessing this in real time.”
Symptoms resembling hay fever
Several members from those communities spoke to Sky News. They described how individuals developed hay fever-like symptoms upon their presence, stating that up to 90% of a crowd would begin coughing, choking, or sneezing when they arrived.
They outlined the significant toll of isolating themselves to evade these reactions. Some reported having suicidal thoughts, while others discussed losing friends, quitting jobs, and spending substantial amounts on potential treatments.
Last year brought a sliver of hope for PATM sufferers. A researcher in Japan published the first cohort study regarding the condition – indicating there could be a tangible cause.
In an interview with Sky News from Tokyo, Professor Yoshika Sekine from Tokai University elaborates on his findings after comparing the skin gases of 20 individuals with PATM to a control group of 24.
He observed that the PATM cohort exhibited “distinctive characteristic skin gas patterns,” with higher emissions of specific chemicals known to trigger respiratory symptoms in those exposed.
Among these, toluene – utilized in the production of explosives, paints, and plastics, as well as a solvent in certain types of paint thinner and adhesives – was noteworthy. According to Public Health England, it can irritate the eyes, nose, throat, and respiratory system; individuals with PATM emitted 39 times more than the control group.
Others chemicals identified by Prof Sekine as particularly significant included sulfur compounds with a “strong, foul odor,” and hexanol, known for its hay-like scent.
These substances are recognized for causing respiratory issues and skin irritation, and are associated with sick building syndrome – a condition acknowledged by the World Health Organization where individuals become ill due to the environment in which they reside or work.
The study concluded: “We must consider the possibility that the chemicals emitted by the PATM group may provoke chemical intolerance in those nearby.”
‘You feel as though you have no right to exist’
It has been approximately 18 months since Fahima began noticing adverse reactions from those around her.
“Wherever I go—be it a shop, while out, or even when walking past someone—people will sneeze and cough hysterically,” she explains to Sky News.
During this time, she has transitioned to working remotely. She has refrained from attending her nine-year-old son’s school performances because “I don’t want to affect the children.”
She prefers to shop during the early hours when it’s quiet. The school run is the only occasion she regularly departs her home.
“From the moment I wake up, my first thought is, how will people react to me today? I have to minimize my presence so as not to affect others.”
She claims that she also emits an odor that transitioned from sweat to a fish-like smell, and then to that of feces.
A medically recognized condition called trimethylaminuria (TMAU)—often referred to as “fish odor syndrome” due to the smell emitted by the sufferers— is frequently conflated with PATM.
However, there are PATM sufferers who assert that their symptoms do not come with a noticeable smell.
Dr. Robin Lachmann, a leading specialist in TMAU, informs Sky News that unlike PATM, TMAU is a condition “we comprehend well and can manage.”
A fundamental difference is that although those around a patient may find the odor unpleasant, “these reactions are not allergic in nature.”
Fahima underwent testing for TMAU, which returned negative results—but even obtaining the test required a year of “effort” on her part, she states.
“With PATM, doctors indicate that even if you desire testing, there’s no diagnosis available. There’s no treatment for it.”
The reactions Fahima experiences extend beyond involuntary coughs and sneezes; she also encounters insults and mistreatment.
“Honestly, I don’t blame people. Especially those experiencing allergic reactions towards us, as we are physically causing them distress, so I can’t expect other reactions from them.”
However, it is “exhausting,” she mentions, leading her to feel “profoundly disheartened.”
“It makes you feel as though you have no right to exist, almost. Because what justification do you have for being in a space that makes someone else uncomfortable?”
Fahima notes that the allergic responses fluctuate based on her diet. If she consumes excessive sugar, meat, or carbohydrates, the following day, she will notice an increase in sneezing among people.
Her son predominantly does not react to her, she adds, but if she eats meat, his responses are so severe that she will administer an antihistamine to him.
Prof Sekine acknowledges that while skin gases are typically influenced by diet, he has yet to establish a connection with PATM. Nevertheless, he has conversed with individuals who have seen improvements in their symptoms.
by eliminating dairy, enhancing their consumption of antioxidants, and focusing on nurturing beneficial gut bacteria.
He also explains why not every individual responds to those with PATM. He notes that it may relate to chemical sensitivity, with certain individuals reacting to very minute quantities present in the surrounding air.
Just as not everyone experiences hay fever during a peak pollen season, not all individuals will be sensitive to the increased chemicals emitted by the skin gases of PATM patients.
‘It’s merely psychological’
The individuals afflicted by PATM who shared their experiences with Sky News frequently mentioned they had been told the condition was “merely psychological.”
There exists a recognized psychological ailment similar to PATM, known as Olfactory Reference Disorder (ORD).
Individuals diagnosed with ORD hold a persistent belief that they are emitting an unpleasant odor, despite the absence of any actual smell, clarifies Professor David Veale, a consultant psychiatrist at the Nightingale Hospital.
This condition can have a “devastating” effect on people’s lives as they invest their energy in addressing what they perceive to be a problem while avoiding social settings due to fear of being “shamed, humiliated, or rejected,” he explains.
“They experience significant stress and disability from it. Yet no one can convince them that they are not emitting a smell. They believe others only say that to be kind.”
Professor Veale indicates that the distinction between PATM and ORD seems to lie in the fact that ORD patients fixate on their impressions of others’ thoughts regarding a nonexistent odor, while PATM sufferers note actual physical reactions in those around them.
Prof Sekine also highlights this distinction in his research, concluding that PATM is unique “in that it affects those nearby, at least based on accounts from individuals with PATM.”
Sandra, who preferred to remain anonymous, admits she earnestly pondered whether her condition could “be psychological” after her physician suggested she might have ORD.
“I experienced far too many incidents for that to hold true,” she states.
“I was even subjected to bullying at work about it in one of my jobs.”
Now in her late fifties, Sandra has endured the condition for 15 years. She claims she once had a successful career, but does not work any longer “partly due to the stress and anxiety this creates.”
Her initial encounter with PATM transpired when she returned to work following an illness, and her supervisor would have a “sneezing fit” each time he entered her office.
A thorough cleaning failed to resolve what she thought was a dust problem – and then she began to observe similar reactions from her colleagues, friends, and even her spouse.
“Eventually, it dawned on me that I must be the cause of this, which horrified me,” she recounts.
“When the reactions are at their peak, I start to react in a similar fashion, that is I feel allergic to myself.”
“I experience additional symptoms like a metallic taste in my mouth, an itchy throat, itchy skin with a mild rash on my abdomen, and occasional low-grade fever.”
However, causing others to react is the most distressing aspect: “It makes me feel terribly guilty to be the source of all this, leading to significant anxiety and depression as a result.”
Alex’s 24-year-old sibling Miguel first recognized PATM symptoms around a decade ago but did not divulge this information to his family until he turned 19.
Many individuals suffering from PATM note that their close relatives do not exhibit symptoms, and Alex does not perceive himself reacting to his brother.
He mentions it is difficult to ascertain if more people cough and sneeze around his brother, as it is such a common phenomenon — yet Miguel is hyper-aware of every cough or scratch of the nose. Someone having a coughing fit can compel him to stay in his room for days.
Alex recalls dining at a restaurant with their grandparents when Miguel first shared details about his condition, and his grandmother noted she could hear people “constantly coughing in the restaurant.”
“That seemed like an increase compared to what is typically normal. But how can you determine what is normal if you aren’t paying attention?”
PATM is often dismissed as simply “psychological” because “it sounds absurd,” Alex states. However, his primary concern upon his brother’s disclosure was to find a way to manage its impact on his mental well-being.
“That is the key issue — and after that, it doesn’t matter whether it is real or not.”
What triggers PATM?
The origins of PATM remain a mystery to both sufferers and researchers. Some report that their symptoms emerged during periods of heavy fast food consumption or intense stress.
Sufferers exchange theories about potential triggers: an unbalanced gut microbiome, fungal infections, or sinus issues.
“You become your own physician, your own medical team,” Medinah states. “I genuinely spend countless nights researching.”
Sandra and another individual interviewed by Sky News discovered that their PATM symptoms exacerbated following a course of antibiotics, while others have mentioned developing skin conditions prior to other symptoms.
MEBO Research, a small consortium of researchers examining rare genetic metabolic disorders, conducted preliminary studies on PATM without being able to identify a cause beyond an evident problem with the body’s “detoxification process.”
Mehmet Ali, MEBO’s director of community outreach and strategy, informs Sky News that PATM requires attention and investigation from the medical community.
Prof Sekine’s research also failed to identify a definitive cause — although he aims to uncover one. “I aspire to establish the criteria for what PATM constitutes and what it does not. This is a very challenging aspect,” he notes.
Without even a working definition of PATM, no formal diagnosis exists. NHS England informed Sky News that it adheres to NICE guidelines, which currently do not encompass PATM.
A NICE spokesperson stated it “can only evaluate treatments that have been approved by UK regulators… If they have not been licensed for PATM, we cannot endorse them for the condition.”
However, identifying a treatment seems a far-off aspiration for sufferers who share various remedies on social media platforms like Facebook and Reddit: a wide array of supplements, antibiotics, digestive enzymes, probiotics, and herbal remedies.
Sufferers undertake extreme measures in the search for solutions, including fasting; eliminating sugar, gluten, and dairy; adopting a raw vegan diet or its polar opposite, the “carnivore diet,” which involves eating solely meat, eggs, and dairy.
Nonetheless, what may offer one person temporary relief does not necessarily benefit another.
Sandra foresees no conclusion to her 15 years of suffering: “We are all merely waiting for a remedy with our lives effectively on hold, but I am nearly 60 now and lack confidence it will occur in my lifetime.”
‘It crushes you like nothing else ever could’
Amir, who opted for anonymity, remarks that without his family’s reliance on him, “I wouldn’t be here; that is how severe my feelings can be at times.”
He depicts his life as having become “truly, truly intolerable.” He explains that he has lost all his friends “because they cannot be in the same spaces as me,” and he even avoids attending the mosque.
“I conduct an experiment — I remain outside of the room to observe if anyone coughs, then enter the room for a few minutes. Most individuals will begin to react.”
Not every person with PATM who spoke to Sky News isolates themselves. Some manage to hold jobs and engage socially — yet none appear immune to the psychological ramifications of the condition.
They describe the solitude of not merely being physically isolated but also being misunderstood by medical professionals, friends, and family; the guilt stemming from the belief that they are making someone else ill; the hopelessness of facing the absence of treatment or a cure.
Medinah expresses her mental health as “shattered; it is virtually nonexistent.”
“Initially, it crushes you in a manner that nothing else ever has.”
She states she resigned from her position as a teaching assistant due to receiving “aggressive” responses and finds her life at a “complete standstill.”
She becomes emotional while discussing the future: “I feel no excitement whatsoever. I prefer not to contemplate it. The reality is so sorrowful. I can’t even visit the local park; I can’t do anything.”
Anyone experiencing emotional distress or suicidal thoughts can contact Samaritans for assistance at 116 123 or email jo@samaritans.org in the UK. In the United States, reach out to the nearest branch of Samaritans or call 1 (800) 273-TALK.