Article: Mystery illnesses are on the rise with women, whom doctors are dismissing as "nervous Nellies" Apr 2020

[Sly Saint]

"The Lady's Handbook for Her Mysterious Illness" author on the only recourse for ailing women who are being ignored

Until recently, being catapulted into a health crisis was typically a solitary affair. Even if you had the privilege of great support and help, you still got sick on your own. You searched for a treatment plan on your own. You kept all the other plates in your life spinning on your own. Now, of course, we're all a facing catastrophic illness together, learning what it feels like when the ground gives way under our feet. Which is why we can learn a few things from those who've been there.

"The prologue is typical of women like me," author and musician Sarah Ramey writes in her new memoir. "A simple and innocuous medical event — often with a gyro or gastro tilt — that should have resolved simply, but didn't." For years after a seemingly minor infection and procedure for it, Ramey was living inside the identity of a chronically ill woman — one for whom doctors had no answers, except that perhaps her symptoms were psychological in their roots.

..........It's very clear that just in the past couple of years a community has arisen over these symptoms. Yet there is a lot of false information out there, a lot of misinformation, a lot of snake oil. There is hope for the medical community, but in the meantime, what would you say to women who are experiencing these mysterious illnesses?

..........If you have really severe chronic fatigue syndrome or really severe mystery illness or really severe Lyme, there are some centers like the Center for Complex Diseases, the Bateman Horne Center. Stanford has a myalgic encephalomyelitis, which is the other name for chronic fatigue syndrome, [initiative].

https://www.salon.com/2020/04/07/ladys-handbook-for-her-mysterious-illness-sarah-ramey-book/

 

[MeSci]

"The Lady's Handbook for Her Mysterious Illness" author on the only recourse for ailing women who are being ignored



https://www.salon.com/2020/04/07/ladys-handbook-for-her-mysterious-illness-sarah-ramey-book/

Interesting.

I'm puzzled though by "We certainly see here in New York city that the people who are becoming infected and becoming very sick are young. Surprisingly young."

 

[adambeyoncelowe]

Interesting.

I'm puzzled though by "We certainly see here in New York city that the people who are becoming infected and becoming very sick are young. Surprisingly young."

Maybe young people are flouting the rules more?

 

[Cinders66]

Perhaps medicine should start insisting that before you label a persons symptoms as psychological they actually have to be able to prove that the person has psychological distress sufficient to explain their symptoms

 

[MEMarge]

Great idea @Cinders66.
BUT, they'd probably use a questionnaire asking things like:

• Are you sad that you can't do the things you used to do?
• Do you have difficulty getting to sleep?
• Do you worry that you are not going to get better?
• ........

and other "useful" questions!

 

[unicorn7]

Perhaps medicine should start insisting that before you label a persons symptoms as psychological they actually have to be able to prove that the person has psychological distress sufficient to explain their symptoms

That's the beauty of the psychological explanation. You can never prove it or disprove it, so it is always true.

Who can determine what is "sufficient psychological distress"? If you would get any of these problems form psychological distress, wouldn't warzones be flooded with people with me/cfs?

 

[NelliePledge]

Bloody cheek - one is not nervous at all.

 

[Cheshire]

What does a Nelly mean?

 

[Sly Saint]

What does a Nelly mean?

nelly
/ˈnɛli/


noun
noun: nelly; plural noun: nellies; noun: nellie

1. 1.
   informal
   a silly person.
2. 2.
   informal•offensive
   an effeminate homosexual man.

Phrases
not on your nelly — certainly not.
"Charlie shook his head vigorously. ‘Not on your nelly, mate.’"

 

[adambeyoncelowe]

nelly
/ˈnɛli/


noun
noun: nelly; plural noun: nellies; noun: nellie

1. 1.
   informal
   a silly person.
2. 2.
   informal•offensive
   an effeminate homosexual man.

Phrases
not on your nelly — certainly not.
"Charlie shook his head vigorously. ‘Not on your nelly, mate.’"

Also an elephant who packed her trunk and said goodbye to the circus...

And an Inuit person colloquially referred to as Eskimo Nell...

 

[Arnie Pye]

I actually think "nervous nelly" is rather more polite than the thoughts that go through a lot of doctors' heads. I've had the experience of having a doctor shout at me to "Get out of my office! There's nothing wrong with you!" He was wrong, and although it is poorly written I have the evidence in my medical records. I made sure I never saw him again, but I doubt he left anything polite in my medical records.

Edit : Grammar

 

[Hutan]

The reviews for

"The Lady's Handbook for Her Mysterious Illness"

are very good.

I'm not sure about this from the Amazon blurb though:

Ramey's pursuit of a diagnosis and cure for her own mysterious illness becomes a page-turning medical mystery that reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet and social connections to the state of our microbiomes.

It makes it sound as though chronic illnesses are a relatively new thing. And of course having enough sleep, a good diet and social connections are important for health, and maybe making changes to these helped Sarah Ramey, but it will be annoying if it is suggested that these are part of the solution to ME/CFS.

@RoseE, as you've read the book, what does Ms Ramey say about cause and treatments?
Edit - actually the article linked in the first post discusses Ms Ramey's ideas on cause and treatment a bit.

 

[Trish]

I haven't read the book but I have just read the article. I have to say I'm not very impressed.

I appreciate it is one person telling her own experiences, and I don't judge her for that, and it's important to share the message about misdiagnosis of physical illness as psychological.

But I wish people telling their stories would not make generalisations - like that it's a new illness, that it's all about women, that functional medicine has answers, that it's about the gut, that it's environmental - all these are assumptions and some of them are wrong.

I have bought the book on my ereader and will report back if I manage to read it.

 

[RoseE]

@RoseE, as you've read the book, what does Ms Ramey say about cause and treatments?

Actually I haven't read the book. I was just reporting that another member of M.E. Awareness NZ had, and had organised the interview on the RNZ.
With the forward notice of the interview we have a chance to prepare questions that might direct the interview - I understand that questions can be sent /texted in.

 

[Hutan]

I listened to the NZ radio interview, and it was helpful to our cause.
Here are some notes I made, but I expect it will be possible to listen to it.
Sarah Ramey came across as a calm and reasonable advocate and the focus was on believing the people who have variations on the ME/CFS, POTS, IBS, CRPS theme.

She feels the numbers of cases are increasing, arguing that there would have been more documentation if the number of people who are bed bound now had been around in previous times. I think that assumption is arguable.

The interviewer was sympathetic throughout. She made the point of the double whammy - being sick and then not being believed. Sarah agreed, noting 'to be told you are a bad person by the people you have gone to for help is quite difficult'.

Although the interviewer sometimes led with possible explanations such as an immune over-response and Sarah would somewhat agree, and added ideas about gut microflora, Sarah was clear that little is known. She specifically said that 'there has been very little funding for ME/CFS research'.

An interesting anecdote was how, although a psychological explanation made no sense to her, she was open to the treatments in the beginning. She had been sad about her situation and the pain and was given medication for depression. She reported how the medication had made her suicidal; when she stopped the medication the suicidal ideation went away. It was a nice illustration of how the treatments can make things worse, potentially actually creating psychological problems to be added to the medical notes.

She said it was 9 years and many doctor's appointments before a doctor actually commiserated with her, saying 'I'm so sorry that you have been through all this'.

Sarah asks medical practitioners to educate themselves, especially with the prospect of more cases following the Covid-19 viral infections. She says the ME/CFS etc syndromes are still not being taught in medical schools, but you don't need to go to the fringes of medicine to find out about the research being done. She mentioned research in places like Stanford and Harvard. She asked doctors to read about the experiences of these patients. And the main ask was to listen to patients and believe them, and provide supportive care. To accompany patients on the journey for answers.

In terms of things that have helped her, she mentioned the usual good food, sleep hygiene, stress management and LDN, but it was clear that she wasn't claiming these as cures. She classifies herself as 'moderate'.

So, as I said, this was a helpful item. Thanks to whoever organised it.

 

[Ravn]

Here are some notes I made, but I expect it will be possible to listen to it.

Good summary @Hutan. It's available on-demand here:

https://www.rnz.co.nz/national/prog...9885/sarah-ramey-women-with-a-mystery-illness

Note that the ME link in the programme notes goes to M.E.Awareness.nz

Sarah Ramey's The Lady's Handbook for her Mysterious Illness is a memoir and a manifesto for a radical overhaul of the health system. Sarah's story starts with a simple and innocuous diagnosis, a college-age UTI, the first clue in what became a debilitating and painful fifteen year health mystery story.

Sarah has written a book about WOMIs (Women with a Mystery Illness) - most commonly conditions such as Lyme disease, ME/Chronic Fatigue Syndrome or Fibromyalgia - so other WOMIs don't have to feel left out in the cold, as she did. Sarah tells Kathryn how, in defiance of being told her severe and chronic pain was likely psychosomatic, she saw more than one hundred and fifteen doctors in pursuit of a diagnosis.

As a musician Sarah Ramey goes by the name of Wolf Larsen, which began as a way to deal with her illness and solitude.

The Lady's Handbook for her Mysterious Illness is available now as an e-book, and will be in NZ bookstores in July.

 

[Andy]

A blog post that I'd thought we'd seen previously from the same author (I searched but couldn't find it on the forum)

When I first began research for my book about women with mysterious illnesses, I was overwhelmed. No two women were alike. The number of illnesses that qualified as mysterious was staggering. Lyme, post-treatment Lyme disease syndrome, candida, Epstein-Barr, Ehlers-Danlos, polycystic ovary syndrome, subclinical hypothyroid, dysautonomia, irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, nonceliac gluten sensitivity, heavy metal toxicity, environmental illness, sick building syndrome—I had started out with the intention of exploring intestinal health as it relates to chronic fatigue and women’s health, but as soon as I turned on my headlamp, women with mysterious illnesses of all kinds came hurtling out of the jungle, like giant moths to a tiny flame.

And so one of the first things I ever did was come up with a clarifying top-ten list regarding the problems contributing to the mysterious marginalization of the mystery illnesses. This list was not exactly a clue in figuring things out, but rather a series of clues making it clearer and clearer that there really was a veil tightly drawn before anyone who was trying to figure things out.

https://www.theparisreview.org/blog/2020/04/02/why-certain-illnesses-remain-mysterious/