Chronic fatigue syndrome and other ‘mystery’ neural-inflammatory illnesses are now widespread and we urgently need to understand them better, says US singer Sarah Ramey.
Her new book The Lady's Handbook for Her Mysterious Illness is both a memoir and a manifesto for a radical overhaul of the health system.
Photo: Julius Schlosburg
Ramey tells Kathryn Ryan her own 15-year battle for a diagnosis was horrific, as over 115 medical practitioners dismissed her extreme pain, brain fog, and lack of energy as psychosomatic, or maybe depression and anxiety.
The experience prompted Ramey to write a book about WOMIs (Women with a Mystery Illness) - who suffer, most commonly, conditions such as Lyme disease, ME/Chronic Fatigue Syndrome or Fibromyalgia - so other WOMIs don't suffer the despair and cognitive dissonance that results from having their conditions invalidated by doctors.
She says the cases are extremely common, with a huge number of women experiencing overlapping symptoms that the medical specialists are telling them aren’t actually real systemic problems, but merely psychosomatic in nature.
“The way I define a WOMI is a lot broader than I think sometimes in the mystery illness community the definition is pretty narrow, just talking about maybe only chronic fatigue syndrome, fibromyalgia, or Pots (Postural orthostatic tachycardia syndrome) … but I, in my research, in my experience, there is a family of neural-endocrine immune problems that run together, which is enormous," she says.
"It includes the auto-immune diseases, it includes mould illness and multiple chemical sensitivity, fibromyalgia and Lime disease. There’s a huge number of problems that all go together.
"So, when you look at them that way that type of aggregate, at least anyway in the United States, you’re looking at 15 million women.”
Men are also affected by the conditions, she said, but that these disproportionately affect women based on current statistics available. Seventy-five percent of auto-immune diseases are found within the female population. Figures also point to a similar scenario when it comes to chronic fatigue syndrome. The reasons are unknown.
The numbers of ‘mystery illnesses’, Ramey says, are also radically increasing, as well as awareness of these conditions.
“It’s an important point because frequently they will actually be dismissed with saying ‘oh, these have been here forever, but there’s more advocacy around them now, so we see them more.
“I think it would be quite difficult to find documentation of illnesses like that prior to about 30 or 40 years ago. Now, you can’t go out without meeting a WOMI. That was my experience the moment I started writing about this.”
People started coming out of the woodwork to tell their stories, which were remarkably similar, Ramey says.
Most spoke of the added pain of having their experience of their medical conditions minimised and dismissed by so-called specialists who lacked the diagnostic tools to deal with what they were presenting with.
“I had an incredibly severe and painful presentation of this type of problem. But for me, and this is true of most people I know, by far the most painful part was being told it was imaginary, that I made it up, that I was a liar, that I was an attention-seeker… To be told that over and over again is incredibly destructive to your psyche."
When Ramey was at university she had been fit, active and healthy. Then, everything changed and the trauma of a botched medical procedure triggered her illness.
It all started with a diagnosed urinary tract infection (UTI), which wouldn’t go away.
“I went to see a urologist, who told me I had a muscle spasm. So, it wasn’t a UTI anymore and I needed a procedure called a urethral dilation, which is supposed to be uncomfortable experience… It was the most painful thing I’ve ever experienced in my life, it was like being hit with a ball of lightning. Within 12 hours I had gone into septic shock and had to be hospitalised for a week and put on intravenous antibiotics for a month.
“It was that incident that much later we learned was, not just an unforeseen complication that couldn’t be explained, but actually there had been an accident in that procedure where I’d actually been injured. That incident is what kicked off two tracts of problems.
"One was the mechanical damage done by botched surgery and that caused an enormous amount of pelvic pain and dysfunction. The other was the more classic mystery illness – the chronic fatigue syndrome, where I was sleeping constantly, my muscles ached, and I was suddenly sensitive to everything. I had horrible brain fog.
“So that really all began overnight with that botched procedure… that’s very common for the development of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It comes on after a triggering event, such as a very serious viral infection, sepsis, a car accident. There’s a whole number of triggers that pretty clearly triggered the same sort of neural-immune response.”
"So little funding is going into research so it's uncertain, but it seems certain that a trigger event kicks off hyper-reactive inflammation that doesn’t turn off, similar to an auto-immune disease, which is a different type of triggered inflammation that doesn’t turn off and causes havoc in the body."
Ramey says she has tasted the type of medical narcissism that projects its own failures on to the patient - something she would repeatedly experience for years afterwards - when she attended a medical examination with her parents present while still at university.
“They were looking to see if there was a mechanical problem with the urethra itself - if I had a congenital problem. So he did this very painful test… where they fill up your bladder and I ended up fainting on the machine. Instead of this provoking a response like, ‘Oh, I’m so sorry you fainted, I’m sorry you hit your head, are you OK?’ Instead, the doctor became quite upset and stormed out of the room and set down after I had gotten dressed, with me and my parents, and he said ‘well, we’ve done the tests and it says you’re perfectly normal and what I’ve concluded, like so many other young women her age, is that Sarah’s problem is psychological’.
“He told this to my parents as if I wasn’t there at all… It was like being stabbed in the heart, but it was just the first time among hundreds of times that this sort of thing would be said.”
After being told repeatedly she had an anxiety disorder and depression, she decided to take the prescribed medicine and psychiatric treatment that proved to be near-fatal.
The repeated invalidation of her experience by the medical fraternity caused her to question herself, creating a type of hellish cognitive dissonance to add to her severe brain fog. Chemical treatment then pushed her to the edge.
“I did take the first anti-depressant I was put on, called Paxil. and within six months – I was sad before this because I was sick, not the other way around – I had become horrifically suicidal.”
Ramey's boyfriend at the time convinced her to get off the medication and the suicidal state went away.
Both her parents both being doctors didn’t help the situation, Ramey says. Neurological inflammation was and is still largely not on anyone’s radar.
After seeing 115 doctors and specialists, all tests come back negative. Then Ramey had a breakthrough in 2012 when a female physician expressed sorrow and empathy for her and referred her on.
Ramey's second doctor was a functional medicine doctor and he finally properly diagnosed her with chronic fatigue syndrome, fibromyalgia and postural orthostatic tachycardia syndrome (PoTS).
"It is a very commonly co-morbid with ME/CFS ...Then I was diagnosed with complex regional pain syndrome, which is very severe."
More recently, Ramey convinced a doctor to re-look at whether she had a mechanical injury in her pelvis that would explain the pain she had felt there since university.
“Low-and-behold there was a tremendous amount of damage right where I had been describing on the left side of the pelvic floor of the vagina that was a very dense mass of scar tissue that was entrapping all of those nerves. I had been describing that over and over and over again since the initial botched surgery and everyone had told me that it was a psychosomatic problem, it was a very real mechanical injury. It was very helpful, so I could draw a line in the sand that said ‘no, I’m not doing anymore ‘brain retraining', therapy or medications to heal my pelvic pain.”
Ramey says there is evidence to suggest that having a mystery illness like chronic fatigue syndrome is a predisposing factor in terms of whether or not a person develops complex regional pain syndrome (CRPS) - a form of chronic pain.
CRPS is another poorly understood condition that typically develops after an injury, a surgery, a stroke or a heart attack. Sufferers experience pain is out of proportion to the severity of the initial injury.
The fact is little we know little for certain about all of these overlapping symptoms as funding research has been extremely limited, Ramey says.
Ramey urges the medical fraternity to prepare for a possible rash of post-Covid inflammatory illnesses, as severe viruses are thought to trigger exaggerated neuroendocrine immune responses that account for a family of lifelong debilitating symptoms.
Her hope is that doctors read the studies and start believing patients when they present with these symptoms - and also push for more research to tackle the increasing number of cases.
"My plea to the field is to just educate yourselves. Start with ME/CFS, even if it’s just to familiarise yourself with something else that is being reported on quite a lot, which is post-Covid syndrome that is ME/CFS. Even just get ready for something that may be coming – familiarise yourself with the science that does exist. It’s there, it’s just not taught at medical schools.”
Ramey encourages doctors to read stories on what it’s like for patients to live with so they can provide better care and support.
“The disparity between what it’s actually like and what doctors think it’s like cannot be overstated.”
Coping with the condition involves basic care, which is still vitally important.
“I really found, in my long journey, that a lot of the things that seemed quite basic, like basic wellness – a diet of real food, really good sleep hygiene, move a little bit. I can’t do too much movement or exercise. All that stress management, things that sound kind of boring, they really do make a big impact, for me.
As a musician, Ramey goes by the name of Wolf Larsen, which began as a way to deal with her illness and solitude and was something creative and meaning she found she still had the capacity when going through her cycles of illness.
“Playing music for me has been a saving grace, it has given me this one thing I can do that is not stolen by the illness.”
The Lady's Handbook for Her Mysterious Illness is available now as an e-book and will be in NZ bookstores in July.
