'I am not mad, Morgellons IS real': Thousands claim to suffer from the agonising skin condition but doctors say it is psychological
Victoria Vigors who says Morgellons disease has driven her to the brink of suicide
It sounds like something from a horror film: an illness that causes an itchy, crawling sensation all over the body, tiny coloured fibres that ooze out of the skin, and painful sores.
For Victoria Vigors, this began last summer when a strange oily substance ‘leaked’ out of her scalp. After a few weeks, her whole body was affected and, to her alarm, tiny white granules started to ‘come out’ of her pores.
‘I was terrified,’ says Victoria, who lives near Dartford, Kent, with husband Dan, 28, an electrician, and their 15-month-old son Riley. ‘I felt my body had been invaded and I had no idea how to stop it.’
Yet despite such dramatic symptoms, a
succession of doctors told the 26-year-old catering assistant they could
find nothing physically wrong with her.
oily substance had disappeared by the time she went to her GP, who told
her she had damaged her skin herself and, without carrying out any
tests, that the granules were ‘clothing fibres and pet hairs’.
and anxious, Victoria turned to the internet for answers and was amazed
to discover that thousands of men and women suffer similar symptoms.
was an unusual new illness called Morgellons disease – and there was no
known cure. Armed with this information, she went to a number of
different doctors, but was shocked to find that, according to the
British medical establishment, the condition does not exist.
was told it was a psychological illness – ‘delusions of parasitosis’ –
that made her believe her body was infested with parasites or non-living
organisms. She was prescribed anti-psychotic drugs and skin creams to
alleviate the itching.
situation drove her to such despair that she contemplated suicide. ‘It’s
hard to explain to someone who hasn’t experienced it just how dreadful
permanently itching skin can be. I would fall asleep at night, only to
wake up in the early hours feeling as if bugs were crawling all over
me. Nothing could stop it,’ she says.
‘I told my husband that if this disease didn’t kill me, then I would kill myself,’ she says. ‘He was shocked, but he and my mum are being very supportive.
‘It is devastating to be dismissed as mad when you know you have a physical illness. Morgellons is real. Everybody who has seen the samples of fibres I have collected accepts that – except the doctors.’
To fight the symptoms, Victoria bathes twice a day in diluted Dettol or salt water and puts Vaseline and nappy cream on her skin – all tips she picked up online. At least, she says, she is not in much physical pain and, unlike many Morgellons sufferers, she is not covered in sores.
The cause of the condition has become the subject of wild speculation, with claims that it is the result of biological warfare or an X-Files-style alien invasion. Some accuse doctors of a global cover-up, claiming Morgellons is caused by genetically modified foods and organophosphates in pesticides.
In the UK, the Department of Health has said only that its policy was ‘to investigate the symptoms of each person who suffers from this condition on an individual basis’, initially through GPs, and that any treatment would be ‘tailored to their individual needs’.
But in the US, which has the highest number of sufferers, it is beginning to be viewed more seriously. After pressure from campaigners and more than 40 Senators, including Hillary Clinton and the pre-White House Barack Obama, the US Centres for Disease Control and Prevention launched a $1million study into the condition in 2006. The results were published last week and concluded that ‘most materials collected from participants’ skin were composed of cellulose, probably of cotton origin.
‘No common underlying medical condition or infectious source was identified, similar to more commonly recognised conditions such as delusional infestation.’
Hilary Clinton and Barack Obama, pre-White House, applied pressure for an investigation into the disease and what its causes are
Psychiatrists welcomed the findings, but campaigners have rejected them and vowed to continue the fight for Morgellons to be recognised as a physical disease.
There are experts who believe Morgellons is an emerging disease, with no known cause or cure.
Yet most doctors claim that the crawling sensations are symptomatic of a mental rather than physical illness, and that the fibres are skin debris or are substances from the patient’s environment, such as food, dust and clothes, and carpet fibres.
The only thing patients have in common, they say, is that they have self-diagnosed after reading about the illness online. So what is the truth
Morgellons was named in 2001 by Mary Leitao, an American, after her son Drew developed sores and she discovered, using a toy microscope, that he was covered in tiny red, blue and black fibres. She took the name from 17th Century French medical papers that described a condition that caused children’s backs to grow coarse hairs (although there is no suggestion that the symptoms are linked to modern cases).
There are experts who believe Morgellons is an emerging disease, with no known cause or cure
Doctors dismissed her concerns and suggested she had Munchausen syndrome by proxy, a mental illness in which a parent pretends their child is sick or harms him to gain medical attention.
Angry and frustrated, Leitao set up the Morgellons Research Foundation, which has since been contacted by more than 12,000 people. Sufferers include folk singer Joni Mitchell, who described it as ‘a weird incurable disease that seems as if it is from outer space’.
In Britain, Jo Simmons, 37, set up Morgellons UK, a campaigning and support group. It has 200 members. ‘I’d had symptoms since 2001 – an itchy scalp, bites on my skin,’ says Ms Simmons, an environmental scientist. ‘But they got worse and started to affect my life.’
White particles, which she describes as ‘like tiny eggs’, and transparent fibres started to ‘come out’ of her pores. In 2007, she examined her skin under a microscope and saw small sores and entwined red and blue fibres.
After researching internet forums, she now washes with salt. ‘It works,’ she says. ‘It draws out the white matter from under the skin and lessens the itching.’
Jo also sprays herself with green tea, takes peppermint ‘internally and externally’, and sprays her carpets and fabrics with vinegar.
‘I believe Morgellons is an infection that can cause neurological disturbance,’ says Jo. ‘We need the medical community to find out what it is.’ But medical experts insist Morgellons is a psychiatric condition. Professor Peter Lepping, of Glyndwr University in Wales, a consultant psychiatrist and a leading British expert on delusional infestations, has seen many patients complaining of itching and crawling sensations and claiming fibres and ‘eggs’ are coming out of their bodies. But when fibre samples are examined, he finds they are ‘dead skin, dust or other things from their environment such as wool and cotton. Everyone is covered in millions
Mary Leitao with her children and young son, Drew, who developed the unexplained condition
of microscopic particles. The difference is that Morgellons patients look for them. ‘Some have genuine itching or oily sensations caused by sweat or an infection, but are delusional about the cause,’ says Prof Lepping.
‘They make it worse by scratching and opening sores, and by applying chemicals that further harm the skin, perpetuating the delusion. Patients examine themselves, often for hours, with a microscope or magnifying glass. They use tweezers or even knives to extract samples, and take photographs of alleged pathogens and lesions. Many post their findings on the internet.
‘They visit doctors, dermatologists, entomologists, microbiologists and tropical disease specialists but will not accept any contradiction of their delusional beliefs, despite there being no medical evidence to confirm their claims,’ says Prof Lepping. He describes Morgellons as a manifestation of ‘cyberchondria’ and says Morgellons ‘has become a real mass phenomenon . . . a socially transmitted disease over the internet’.
He and his colleagues are convinced that the disease has been spread as people read about it online, match it with their symptoms and declare themselves sufferers.
‘Morgellons appears only in developed countries that are internet-literate,’ he says. ‘Patients often go to the doctor and say, “I have Morgellons.” They have already made up their minds.’
Prof Lepping is adamant 90 per cent of sufferers can be cured with anti-psychotic drugs, but most will refuse to take them as they do not think they are mentally ill.
‘They visit doctors, dermatologists,
entomologists, microbiologists and tropical disease specialists but will
not accept any contradiction of their delusional beliefs, despite there
being no medical evidence to confirm their claims,’ says Prof Lepping
‘That’s when they turn to the internet again, read that doctors are allegedly lying to them, and take dangerous advice to do things such as wash themselves in bleach and other products that can damage their skin,’ he says. ‘It becomes a self-fulfilling prophecy.’
Yet Dr Anthony Bewley, a consultant dermatologist in East London who has treated Morgellons patients, says an open mind is needed. ‘I take it seriously, look for any evidence and will do skin biopsies [where samples of skin are cut out to be tested in a lab] if necessary.’
Dr Bewley often has a psychiatrist involved in the treatment, but stresses that this is ‘not because we think it’s all in the patient’s head, but because we want to treat them holistically. The condition can be very stressful’.
He offers sufferers medication for the itching and also treatments for the skin, including creams, antibiotics and ultraviolet-light treatment. ‘Many have improved or found that the condition resolves,’ he says.
At the University of California, Davis, Prof Lynn Kimsey says that ten per cent of the thousands of people she has seen with the symptoms do have skin parasites – usually rat-mites or scabies.
She believes that symptoms are caused by a range of nerve and brain-chemistry damage, often linked to drug use or hormonal problems, including the menopause, and exacerbated by stress. ‘Loneliness, and the stress that causes, is also a factor,’ she says, adding that the internet has exacerbated the problem, with people self-diagnosing and self-medicating.
Prof Kimsey says the medical community has treated Morgellons sufferers ‘shabbily’ and failed to look for underlying causes.
Colleague Randy Wymore, director of the university’s Centre for the Investigation of Morgellons, says: ‘The fibres are not simply textile contamination and the black specks are not tiny blood clots, ground pepper or other materials suggested by some physicians. Morgellons is an actual pathology and not a purely psychiatric disorder. Delusions don’t fabricate physical evidence from thin air.’ There’s no evidence to suggest it is contagious but Wymore says where the fibres come from remains a mystery. ‘Once that is known, a treatment should be forthcoming.’
In Kent, Victoria is managing her symptoms as best she can, helped by sleeping tablets and antidepressants. She has undergone two psychiatric assessments, which concluded she was not delusional.
As a mother, she is worried that Riley may develop the condition. ‘I hesitate every time before I go to kiss or cuddle him,’ she says. Indeed, when they are together, he occasionally flicks his hand across his face as if irritated by an itch.
‘I have to fight a battle with my body every day,’ she says. ‘I am not mad and I will fight until doctors accept that Morgellons is a physical illness. Only then will they be able to find a cure.’