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

Bloody cheek - one is not nervous at all.

 

What does a Nelly mean?

 

The reviews for

are very good.

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

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.

 

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.

 

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.