To wish Miranda Hart had written a different book?

[WWLD]

OK, I know I am, but for the 4th time in as many days, I've had someone suggest I read her book because "she cured herself from ME, you can too" (or something along those lines). I'm sure she had the best of intentions in writing it, I know she's said she's not claiming to be cured, or that it will work for everyone. However, if 4 intelligent people have taken the same thing from it, I'm worried.

I've had ME for nearly 35 years, I have tried many different things to try and help over those years. I've lived through the 'yuppie flu' and the whole NHS believing 'it's all in your head's, so I'm pissed off that someone with a platform is basically continuing this narrative. Especially coming out at the same time as the coroner's inquest report on the death of Maeve Boothby O'Neill.

As I said, I know I ABU, but I honestly thought we were getting somewhere.

For those saying she has Chronic Fatigue, not ME, they are the same thing. It’s a horrible condition, very misunderstood and very difficult to live with. Well-meaning people send me links, books, ideas constantly. It’s difficult some days to tell yourself it comes from a good place, which it does, because it’s just so bloody frustrating and exhausting. We’re not “just a bit tired” and the way it affects each individual varies so wildly, from those who still manage to work, to those who are bedridden and don’t even have the energy to chew food. OP I know where you’re coming from, I’m sorry.

I found ginger biscuits really good for hyperemesis. Obviously not a cure, but did help with the symptoms.
I have sympathy with OP as I have fibromyalgia and an autistic son so I'm used to well-meaning people giving me unsolicited advice!

Chronic Fatigue Syndrome is the same as ME. Chronic fatigue is a consequence of other conditions, it doesn't supplant their actual diagnosis or mean they have ME/CFS. That's why people are making the distinction.

I agree with you that people don't understand that chronic fatigue isn't just being tired and resting to feel better.

Have you read the book OP? As you rightly say she's not claiming she's cured but she has found ways to live more productively and more happily with her horrible, debilitating disease so it's only the 4 intelligent women you mention - ie your friends - who are saying she's cured herself ... I highly doubt they have actually read the book. Don't blame Miranda Hart, some people may find it helpful and encouraging to read the book so fair play to her for using her 'platform' in this way. There are many debilitating long term conditions which necessitate sufferers finding strategies to cope as best they can in the face of treatments not being effective, or non-existent, or coming with nasty side effects not just chronic fatigue, and its associated myalgias.

I haven’t read the book only saw her interviewed on tv. She didn’t cure herself of ME, she was treated for previously non diagnosed Lymes disease. Was she misdiagnosed with ME did she think she had ME? No idea. But fgs even Alex Jones can get the facts straight in a 20 min interview.

why can’t MN?

ME is not Chronic Fatigue. As I explained in my earlier post Chronic Fatigue Syndrome is not the same as Chronic Fatigue. Chronic Fatigue is one of the symptoms of ME, but not the only one. Others include orthostatic intolerance, cognitive problems, neurological problems, digestive issues and circulation difficulties to name just a few. However, the defining symptom of ME is Post Exertional Malaise, which is an inability to undertake levels of activity - physical or mental - without suffering an exacerbation of their symptoms and this is an absolutely crucial distinction. People with Chronic Fatigue may improve by gradually increasing the amount of activity they undertake. People with ME get WORSE when they increase their activity levels. Miranda had Chronic Fatigue as a result of Lyme Disease, not Chronic Fatigue Syndrome.

As someone with CFS, this is one of the worst things because actually after a diagnosis of CFS that lasts for more than 6 month it is literally indistinguishable form ME hence most medical tags being ME/CFS

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/#:~:text=Myalgic%20encephalomyelitis%2C%20also%20called%20chronic,of%20ME%2FCFS%20is%20unknown.

post viral fatigue has many symptoms, including but not exclusively PEM

it helps no one to gate keep medical labels, lets not be those people yeah?

Sorry you have ME too OP.

I agree, it can't have been ME. Imagine someone saying they had cured themselves of MS? Or MND?

We are getting somewhere withE, then when research reveals tests, the source of ME and treatment, there will be fewer people saying they've cured it themselves.

"Im afraid it is all about forcing yourself to do stuff even if your body is screaming no"

That's a good way to create flare ups that take a long time to sort out. Anyone new to having disastrous levels of fatigue I would advise to rest as much as their body is telling them to, as much as they are able.

I think what @Brightbluetowel was saying was chronic fatigue (which is a symptom of many conditions) is not the same as ME/CFS, not that CFS is not ME.

While I dislike the term CFS (for the very reason that it gets conflated with chronic fatigue as a symptom of something else), I think most of us accept that, currently, the terms are interchangeable.

Yes, as someone who had the condition for a number of years in my teens and 20s, I really hate the term chronic fatigue. It makes it seem like it's just excessive tiredness. No amount of rest helped my brain fog to stop or my muscles to stop twitching and being sore (although any exertion definitely made them worse). I prefer ME as a term. Some say that Myalgic Encephalomyeltis is a medically inaccurate description of the condition, so perhaps a different name altogether would be better.

The term CFS upsets me too. Obviously have to accept it, but if only it was just fatigue. For me the PEM is the most terrible thing. Fluey legs, twitching muscles, sore throat, heart palps and more are absolutely debilitating. I have pots too but m.e is the worst.

Yes, it's always a good idea to fact check. Here's Hart talking about getting a diagnosis "under the banner of ME" at one minute 15 into this interview:

https://www.bbc.co.uk/sounds/play/p0jwjssm

Unfortunately I'm not signed up. Can anyone give a brief summary?