‘I walk into a room and people start coughing’: Rare condition makes people allergic to sufferers
On rare occasions that Medinah leaves her home, people around her will cough, sneeze and rub their eyes.
“I am the allergen,” the 23-year-old, who did not want her full name used, tells Sky News.
She is one of a group of people with a condition so rare it does not have an official medical name.
It is known simply as People Allergic To Me – often shortened to PATM.
Medinah spent a year online searching her symptoms before she found social media support groups and the name that had been coined there.
During those months, she worried she was “crazy”: “I thought, yes, I’m losing it now. But then after a year and the constant reactions with people, I just realised this cannot be in my head, I can’t be crazy, I’m seeing this in real time.”
Hay fever-type symptoms
Several of the people in those groups spoke to Sky News. They described people developing hay fever-type symptoms in their presence, saying as much as 90% of a room would start coughing, choking, or sneezing when they entered.
They detailed the immense toll of isolating themselves to avoid these reactions. Some said they had been suicidal; others talked of losing friends, giving up jobs, and spending hundreds of pounds on possible remedies.
Last year, PATM sufferers had a glimmer of hope. A researcher in Japan published the first cohort study on the condition – and it indicated there could be a physical cause.
Medinah has suffered from People Allergic To Me since 2020
Speaking to Sky News from Tokyo, Professor Yoshika Sekine from Tokai University describes what he found when he compared the skin gases emitted by 20 people with PATM to a control group of 24.
He discovered the PATM group had “very specific characteristic skin gas patterns”, giving off higher levels of certain chemicals that are known to provoke respiratory symptoms in people exposed to them.
One of them, toluene, is used in the manufacture of explosives, paints and plastics and as a solvent in some types of paint thinner and glue. It can cause irritation to the eyes, nose, throat and respiratory tract, according to Public Health England – and people with PATM emitted 39 times more of it than the control group.
The other chemicals Prof Sekine identified as being particularly important are sulphur compounds, which have a “very strong, pungent odour” and hexanol, which has a hay-like smell.
These chemicals are known to trigger respiratory symptoms and skin irritation and are both linked to sick building syndrome, a condition recognised by the World Health Organisation where people are made ill by the building in which they live or work.
The study concluded: “We must carefully consider the possibility that the chemicals emitted by the PATM group may induce chemical intolerance in those around them.”
‘You feel you don’t have the right to live’
It’s been about 18 months since Fahima started noticing reactions from people around her.
“Wherever I go, if I go into a shop, if I’m out, if I walk past someone, people will sneeze and hysterically cough,” she tells Sky News.
In that time, she’s shifted to working entirely from home. She has stopped attending her nine-year-old son’s school plays because “I don’t want to impact the children”.
She shops in the early, quiet hours. The school run is the only time she regularly leaves the house.
“From the minute I wake up, the first thought is, how are people going to react to me today? I have to minimise myself so that I don’t impact other people.”
She says she also gives off an odour that developed from sweat to fish and then faeces.
There is a medically recognised condition called trimethylaminuria (TMAU) – sometimes called “fish odour syndrome” for the smell sufferers emit – that is sometimes grouped together with PATM.
However, there are PATM sufferers who say their symptoms are not accompanied by any discernible smell.
Dr Robin Lachmann, one of the country’s leading doctors specialising in TMAU, tells Sky News that unlike PATM, TMAU is a condition “which we understand well and can treat”.
A key difference is that while people around the patient may find the odour unpleasant, “these responses aren’t allergic”.
Fahima took a test for TMAU which came back negative – but even getting the test took a year of “legwork” on her part, she says.
“With PATM, doctors say even if you want to get tested, there’s no diagnosis. There’s no way to treat it.”
The reactions Fahima gets aren’t just involuntary coughs and sneezes, she says, but insults and abuse.
“You know what? I don’t blame people. Especially the people that are having allergic reactions to us, we’re physically making them sick, so I don’t expect them to have any other reaction.”
But it’s “draining”, she says, and makes her “incredibly depressed”.
“It makes you feel like you don’t have the right to live, almost. Because why should you be in a place making someone else feel uncomfortable?”
Sufferers describe isolating themselves to avoid reactions from other people. Pic: iStock
Fahima says the allergic reactions vary depending on her diet. If she eats a lot of sugar, meat or carbohydrates, the following day she will notice a lot of people sneezing.
Her son mostly doesn’t react to her, she says, but when she eats meat his reactions are so severe she will give him an antihistamine.
Prof Sekine says while skin gases are typically influenced by diet, he hasn’t yet been able to find a link for PATM. But he has spoken to people who have improved their symptoms by cutting out dairy, increasing their intake of antioxidants and working on boosting good gut bacteria.
He also suggests why not everyone reacts to people with PATM. He says it could be to do with sensitivity to chemicals, with some people affected by very low doses in the air around them.
Just as not everyone suffers from hay fever when there’s a high pollen count, not everyone will be sensitive to the higher chemicals in the skin gases of PATM patients.
‘It’s all in your head’
The PATM sufferers who spoke to Sky News invariably said they had been told the condition was “all in their head”.
There is a recognised psychological condition that bears similarities to PATM called Olfactory Reference Disorder, or ORD.
People with ORD are preoccupied with the belief they are giving off a bad smell despite there being no odour, explains Professor David Veale, a consultant psychiatrist at the Nightingale Hospital.
It can have a “devastating” impact on peoples’ lives as they dedicate their energy to tackling the perceived problem and avoid social situations out of fear of being “shamed, humiliated, rejected”, he says.
“They are very stressed and very disabled by it. But no one can convince them that they can’t smell them. They think they’re just saying that to be nice.”
Prof Veale says the difference between PATM and ORD appears to be that ORD patients are preoccupied with their perceptions of what other people think about an imagined smell, while PATM sufferers perceive physical reactions in other people.
Prof Sekine also identifies this difference in his research, concluding PATM is unique “in that it affects the people around them, at least based on descriptions by people with PATM”.
File pic: iStock
Sandra, who did not want to use her real name, says she seriously considered whether her condition could “be in my head” after her doctor suggested she had ORD.
“I’d had too many incidents happen for that to be true,” she says.
“I was even bullied at work about it in one job.”
Almost 60, Sandra has lived with the condition for 15 years. She says she used to have a good career, but no longer works “partly due to the stress and anxiety that this causes”.
Her first sign of PATM came when she returned to work after a bout of sickness and her boss had a “sneezing fit” every time he came into her office.
A deep clean didn’t sort what she thought was a dust issue – and then she noticed other colleagues reacting in the same way, then friends and even her husband.
“Eventually it occurred to me that it must be me causing this, which filled me with horror,” she says.
“When the reactions are at their worst, I have a similar reaction myself, that is I become allergic to myself.
“I have other symptoms like a bad taste in my mouth, itchy throat, itchy skin with a mild rash on my abdomen and spiking mild temperature.”
But making others react is the worst part: “It makes me feel dreadfully guilty to be causing all of this and I have severe anxiety and depression as a result.”
Alex’s 24-year-old brother Miguel first noticed PATM symptoms about 10 years ago, but didn’t tell his family until he was 19.
Many people with PATM say close relatives do not get symptoms, and Alex does not notice himself reacting to his brother.
He says it’s also hard to say whether more people cough and sneeze around his brother because it’s such a commonplace thing – but Miguel will notice every cough or nose scratch, and someone having a coughing fit can be enough to make him stay in his room for days.
Alex recalls being at a restaurant with their grandparents when Miguel first told them about the condition, and his grandmother agreed she could hear people “just constantly coughing in the restaurant”.
“That seemed like an increase to what’s normal. But then how do you know what normal is if you’re not paying attention to it?”
PATM is easy to write off as “just” psychological because “it sounds ridiculous”, Alex says, but his first concern when his brother opened up about the condition was to find a way to cope with the impact on his mental health.
“That’s the important thing – and then it doesn’t matter whether it’s real or not.”
What causes PATM?
The cause of PATM is a puzzle to sufferers and researchers alike. Some people say their symptoms started during a time when they were eating a lot of fast food or experiencing high stress.
Sufferers trade theories about possible triggers: a disrupted gut microbiome, fungal infections, sinus problems.
“You’re like your own doctor, your own medical team,” Medinah says. “I literally stay up all night researching.”
Sandra and another person who spoke to Sky News found their PATM flared after a course of antibiotics, while others described developing skin issues before other symptoms.
MEBO Research, a small collective of researchers investigating rare genetic metabolic diseases, has conducted exploratory studies of PATM without being able to pinpoint a cause beyond an apparent issue with the body’s “detoxification process”.
Mehmet Ali, MEBO’s director of community outreach and strategy, tells Sky News PATM needs attention and research from the medical community.
Prof Sekine’s research also did not identify a cause – although it is his goal to find it. “I would like to define the criteria for what PATM is, and what it is not. This is a very difficult point,” he says.
Without even a criteria of what PATM is, there is no formal diagnosis. NHS England told Sky News it follows NICE guidelines, and there are none for PATM.
A spokesperson for NICE said it “can only look at treatments that are licensed by the UK regulators… If they have not been licensed for PATM, we cannot recommend them for the condition”.
But finding a treatment seems a distant dream to sufferers who share remedies on Facebook and Reddit: supplements of every variety, antibiotics, digestive enzymes, probiotics, herbal treatments.
Sufferers go to extreme lengths in search of solutions. Fasts; eliminating sugar, gluten and dairy; raw veganism and its opposite, the “carnivore diet” – essentially just eating meat, eggs and dairy.
But what might grant one person temporary relief doesn’t necessarily work for someone else.
Sandra sees no end to her 15 years of misery: “We are all just waiting for a cure with our lives in effect on hold but I’m nearly 60 now and not confident it will happen in my lifetime.”
‘It crushes you like nothing has crushed you before’
Amir, who did not want to use his real name, says without family relying on him “I wouldn’t be here, that’s how bad I feel sometimes”.
He describes a life that has become “really, really unbearable”. He says he has lost all his friends “because they can’t be in the same areas as me” and even avoids the mosque.
“I do an experiment – I stay out of the room to see if anyone is coughing, then go in the room for a few minutes. The majority of people will start reacting.”
Not everyone with PATM who spoke to Sky News isolates themselves. Some hold down jobs and socialise – but none seem immune to the mental health impacts of the condition.
They describe the loneliness of not just being physically isolated, but of being misunderstood by doctors, friends and family; the guilt of feeling you’re making another person ill; the despair of there being no treatment or cure.
Medinah describes her mental health as “shattered, it’s non-existent”.
“In the beginning it crushes you, it crushes you in a way that nothing has ever crushed you before.”
She says she quit her job as a teaching assistant because she was getting “aggressive” reactions, and now life is at a “complete stop”.
She gets emotional talking about the future: “I don’t feel excited at all. I don’t even like to think about it. The reality is so sad. I can’t even go to the local park, I can’t do anything.”
Anyone feeling emotionally distressed or suicidal can call Samaritans for help on 116 123 or email jo@samaritans.org in the UK. In the US, call the Samaritans branch in your area or 1 (800) 273-TALK.
The man who killed Conservative MP Sir David Amess was released from the Prevent anti-terror programme “too quickly”, a review has found.
Sir David was stabbed to death by Islamic State (ISIS) supporter Ali Harbi Ali during a constituency surgery at a church hall in Leigh-on-Sea in October 2021.
The killer, who was given a whole-life sentence, had become radicalised by ISIS propaganda and had been referred to the anti-terror programme Prevent before the attack.
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His case had been closed five years before, after just one meeting for coffee at a McDonald’s to deal with his interpretation of “haram” (forbidden under Islamic law), as well as texts and calls with an “intervention provider”.
Despite Prevent policy and guidance at the time being “mostly followed”, his case was “exited too quickly”, security minister Dan Jarvis told the House of Commons on Wednesday.
Following the publication of a review into Prevent’s handling of Southport child killer Axel Rudakubana earlier this month, Mr Jarvis said a Prevent learning review into Sir David’s killing would be released this week in a commitment to transparency over the anti-terror programme.
Matt Juke, head of counter-terrorism policing, said it is clear the management and handling of Ali’s case by Prevent “should have been better” and it is “critical” the review is acted on “so that other families are spared the pain felt by the loved ones of Sir David”.
Ali Harbi Ali was referred to Prevent twice before he stabbed Sir David to death. Pic: Met Police
The review found:
• Ali was referred to Prevent in 2014 by his school after teachers said his demeanour, appearance and behaviour changed from a previously “engaging student with a bright future” with aspirations to be a doctor to failing his A-levels and wanting to move to a “more Islamic state because he could no longer live among unbelievers”
• Prevent quickly took his case on and he was referred to Channel, part of the programme that aims to prevent involvement in extremism
• He was “exited from Prevent too quickly”, Mr Jarvis said, just five months later “after his terrorism risk was assessed as low”
• A review by police 12 months after he was released from Prevent “also found no terrorism concerns” and the case was closed. This was not uploaded for eight more months due to an “IT issue”
• People released from Prevent are meant to have a review at six and 12 months
• The assessment of Ali’s vulnerabilities “was problematic and outdated” as it did not follow the proper procedure, which led to “questionable decision-making and sub-optimal handling of the case”
• Ali’s symptoms were prioritised over addressing the underlying causes of his vulnerabilities – and support provided did not tackle those issues
• Record keeping of decisions, actions and rationale was “problematic, disjointed and lacked clarity”
• The rationale for certain decisions was “not explicit”
• Ali’s school was not involved in discussions to help determine risk and provide appropriate support – they were only called once to be told the “matter was being dealt with”
• A miscommunication led to only one intervention session being provided, instead of two.
Read more:
Sir David Amess’ daughter taking legal action
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Is the Prevent programme fit for purpose?
The review found most of the failures in Ali’s case would not be repeated today as the guidance and requirements are much clearer.
It said referrers, in Ali’s case his school, are kept informed and engaged, and different departments and agencies – not just police – have clear roles.
Which records need to be kept is now clear and guidance for detecting underlying vulnerabilities has changed and would have made a difference, the review added.
It said a Prevent “intervention provider” met Ali at a McDonald’s to deal with his understanding of “haram” (forbidden under Islamic law).
No risk assessment was made but they suggested one more meeting, however a breakdown in communication between the police and the provider meant there were no more meetings.
Training for providers is “substantially different” now and the review says this would not be repeated today, with the provider in question saying the process is “a completely different one today”.
However, the review said there are still problems – not just in Ali’s case – with the Vulnerability Assessment Form, an “incredibly complex document that is vital to Channel” and the progression of a case.
David Amess. Pic: Penelope Barritt/Shutterstock
It also found a more recent decision by the College of Police to only hold Prevent case data for five years “may prove to be problematic” and if Ali’s case material had been deleted under that ruling “it would have been nigh on impossible to conduct this review”.
Sir David’s daughter, Katie Amess, 39, last week welcomed the announcement to publish a review into Ali’s case but said every victim failed by Prevent deserves an inquiry, not just the Southport victims.
“We potentially wouldn’t be in the same situation today with repeat failings of Prevent had somebody had just listened to me back when it [her father’s killing] happened and launched a full public inquiry,” she told LBC.
Ms Amess said she believes if the Southport attack had not happened, the review into Prevent’s handling of her father’s killer would never have been released into the public domain.
Sir Keir Starmer has told the families of those killed in the Nottingham attacks that a judge-led public inquiry will start in “a matter of weeks”.
The families of Barnaby Webber, Grace O’Malley-Kumar and Ian Coates were told at an emotionally charged meeting at Number 10 that a “number of different agencies” would be scrutinised by the probe.
Students Mr Webber and Ms O’Malley-Kumar, both 19, and 65-year-old caretaker Mr Coates were killed by Valdo Calocane before he attempted to kill three other people in a spate of attacks in the city in June 2023.
Calocane was sentenced to an indefinite hospital order in January last year after admitting manslaughter by diminished responsibility and attempted murder.
The victims’ families met with Sir Keir Stamer at Downing Street on Wednesday. Pic: PA
Prosecutors accepted a plea of manslaughter after experts agreed his schizophrenia meant he was not fully responsible for his actions. The families said recently that he “got away with murder”.
Speaking outside Downing Street on Wednesday, Emma Webber said: “It’s the first bit of positive news that we’ve been able to have for a very, very long time. We’re still processing it.”
Dr Sanjoy Kumar added: “As we have always said as families, everywhere that Valdo Calocane intersected with the authorities, we were let down.”
He then said the public inquiry “has been fantastic news for all of us, we welcome it, we’ve been working so hard to it”.
“Everyone who has also suffered the way we had, we will make sure that changes come from our inquiry for the betterment of our country that makes… the land safer for all of us.”
Emma Webber said the inquiry was the ‘first bit of positive news’ for a while. Pic: PA
Mrs Webber also said the families were told the inquiry would be concluded within two years, and Dr Kumar thanked the prime minister “from a father to a father”.
During the meeting, Sir Keir said focusing on just one aspect of the case would not be right as he did not “think that will do justice,” and said it would be a statutory inquiry.
He added a retired judge is set to be appointed in due course, and said: “As soon as that happens, the process will start.”
Read more from Sky News:
Sir David Amess’ killer ‘exited’ from Prevent ‘too quickly’
NHS trust fined £1.6m over deaths of babies
The meeting came after NHS England’s report into Calocane’s mental health care in the lead-up to the attacks, which found treatment available to him “was not always sufficient to meet his needs”.
The report detailed four hospital admissions between 2020 and 2022 and multiple contacts with community teams before he was discharged to his GP because of a lack of interaction with mental health services.
It also found Calocane was allowed to avoid taking long-lasting antipsychotic medication as he did not like needles, and did not consider himself to have a mental health condition.
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