To wish Miranda Hart had written a different book?

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

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

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, 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.

"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.

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.

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?

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.

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?

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.

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.

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!

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.

This is a brilliant summary.

And why it is so frustrating when people think that because they or someone they knew got better from chronic fatigue just by thinking themselves better, that doesn't mean someone who is not getting better from it must be thinking negatively/not accepting their condition etc.

I really hope more research can be done because I want everyone to have that moment where doctors understand the mechanics of what is going on in their body. It's so clear ME has a substantial neurological component.

I was about to try and write similar without causing distress to others, but you did it way better! So I've amended and chopped my comment down!

There is lots of misunderstanding still about M.E. amongst doctors and scientists.

I used to have a GP, now retired, whose personal opinion off the record was that Fibromyalgia, CFS and ME are all the same disease with a differentiated emphasis on symptoms. That was her opinion and the private opinion of some other doctors she said, although she said some doctors simply don't believe it exists full stop and she told me to start growing a think skin, because I was going to be confronted with much scepticism thinking from professionals.

I have personally also been told by a consultant that he didn't believe in anything except Myalgic Encephalomyelitis. Fibromyalgia and chronic fatigue syndrome were, in his opinion and his own words to me: 'doctors not doing their jobs properly' His words not mine.

The problem is CFS has always had a more fluid origin than M.E., which was said to come on very suddenly and is actually classified as a central nervous system disorder. CFS was said to come on gradually and have any number of origins; post viral, accident, trauma, autoimmune disease, pituitary gland dysfunction. Hence the potential to get better once identifying a possible cause is greater.

I have also heard stories similar to some poster's here, people using certain apps or NLP or certain therapies and they are 'cured'. If you think of chronic fatigue as a cluster of symptoms with fatigue being the all encompassing one rather than as a disease (I neither agree or disagree) then it's less hard to understand how one person can appear to do better than others and that some people will never find the cause, and even if they find the cause, may still not be able to improve enough to recover, whilst another person finds their way and appears to recover.

So you can have a group of people with CFS who recover - end result is improvement in quality of life

Another group with CFS who do not recover/get worse/recover partially - end result is a poorer/severely poor quality of life

A group with Myalgic Encephalomyelitis who may have sporadic periods of doing better, but never recover and can get sick to the point of death - end result can be a very greatly deteriorated quality of life

The middle and and especially the latter group particularly, is vulnerable to any suggestions by well meaning people, but especially people of status and authority that there lies simple cures that simply involve rethinking, reframing stress etc. The DWP actually spent money trying to debunk the condition existed at all to save money and if you refused to do graded exercise (a therapy they are still selling just calling it by a different name) then that was proof that you had a psychological illness and liked being ill and you put in the same category as 'drug seekers' - that's how vulnerable this group is.

In regards to CFS there is mainstream medical speculation about various causes including circulation issues, and small cell neuropathy. I am not up to date on any current theories.

PEM needs specific outlining. Most everyone will feel more tired after activity if they are already running on low energy reserves after all. The difference is how extreme it is. Besides becoming bed bound and in some cases, unable to eat, not being able to even talk, reduced to stuttering and slurring my words like an alcoholic who has been drinking for days or (apologies) someone with a brain injury is the result of doing something as simple as a trip to the cinema on the previous day. Someone said something about Audiobook and I had to smile. It's too hard (and painful) to concentrate on something like that without constant rewinding to the point of not bothering anymore on a bad day. Although hey people may be different.

Maranda Hart didn't have ME did she had undiagnosed lymes disease. I do think it should be considered when dealing with chronic fatigue but it's not the same thing so that would be my answer, I don't have Lyme disease
It's not even comparing apples with pears it's comparing apples, with fish.

Epic

My neurologist will be thrilled at all the money saved on meds.

I have only listed to a bit so far (after my curiosity was piqued this morning) but so far it is just waffle that doesn't really say anything. Am curious to get further in

I am very much at peace with my chronic illness. Have planned my life to work around it.

But what really made the big difference was doctors discovering a medication that works for Myasthenia and discovering the tests that diagnose it in more cases.

Surely some of this "positive energy" should be directed at wishing for more research into the physical causes can be directed and wishing people would accept it does have a physical cause albeit one that hasn't being diagnosed yet. I don't think it is negative thinking to be frustrated at ignorant assumptions

I don't feel hugely sorry for myself but also I refuse to accept that toxic positivity ( where society expects me to feel relentlessly cheerful because someone else has it worse/it makes them less uncomfortable ) is the solution.

YANBU.

Here's the level of "science" included in Hart's book, where she's describing how some woo woo dipshit did an "experiment" where he spoke kindly to one bowl of rice and nastily to another:

“The bowl spoken badly over started going mouldy in a way the other didn’t. I KNOW! Talk about the power of words.”

And yet she is also feels qualified to write things like this, where she's talking abut the "brain rewiring" model, which is basically the old lightning process :

"It’s slowly filtering down from neuroscientists’ studies over the last four or five decades to GP surgeries and becoming the understood universal answer in the healing of many chronic illnesses, in particular ME/CFS, fibromyalgia, food and chemical insensitivities, and now long Covid."

The UNDERSTOOD UNIVERAL ANSWER, everyone! It's here!!! Such fun!

I wonder why people are still suffering?

There is an element of glass half full/half empty about how many of us deal with chronic illness.
I’m a glass half full. I accept my ill health and work around it. I have learned not to crave a different life and not to try and keep up or envy others apparent wonderful lives. My life is great, I just can’t always join in like I used to. I have found other ways to live a fulfilling life.
Maybe because I have others around me who are in a worse position I feel lucky to be in a better position.
My younger sister is currently on the end of life pathway. She is mid fifties, had bc aged 33, diagnosed with Parkinson’s 4yrs ago and then stage 4 ovarian cancer a month ago. Her life plan had to change after her bc diagnosis. She has been an inspiration to us all since she always pushed herself to achieve as much as her body and mind allowed her. She was still running until a couple of months ago.
I never feel that life has been cruel to me, I have a long history of medical problems, I just look at my sister and think how lucky I have been to be a mother and to continue in my beloved career, something my sister was unable to enjoy.

The op may never get better, adjusting to this and living your best possible life is the solution.

100%

Chronic fatigue syndrome/m.e is NOT the same as chronic fatigue. The former is a condition with immune and neurological symptoms of which fatigue is a part. The latter describes chronic fatigue by literally any cause.

exactly this

I get what you’re saying and there does seem to be strong evidence that an ongoing level of permanent recovery is possible if you can get to that point within 5 years of symptoms starting. Unfortunately it seems that after that 5 years it becomes extremely unlikely that a person with ME will make a full recovery to pre-illness life.

It’s amazing you found something that worked for you and you were able to recover. However for most that’s not the reality and it feels totally unfair. Perhaps if the knowledge we have now about the condition was available a few decades ago and we weren’t instead exposed to harmful treatments then more of us would have recovered. Once you are multiple decades in it’s hard not to feel resentful that you can’t recover in a way others have or that you potentially made yourself worse by following treatments that were recommended at the time and are now known to be harmful. That’s not your fault for recovering but there is a level of resentment/jealousy from those who are still ill as it appears to them that it’s reinforcing the narrative that they could get better if they just tried harder.

Im one of 18,000 people who have submitted DNA to a research project which is trying to identify the underlying cause which will hopefully lead to a diagnostic test and reliable treatment. We want to be better but when you’ve spent decades being told ‘just try this, it worked for someone I know’ and then it doesn’t it’s extremely disheartening.

Im fortunate in many ways, I’m not as ill was I was a decade ago, I’m able to work part time from home, I can travel, I can do things I enjoy. I have to balance my life with rest and quiet, I follow a clean diet, no alcohol, take supplements, go to yoga when I’m able, get fresh air, engage in therapy, have regular Accupuncture. I agree that the brain is key to improving a large number of health concerns, I think a lot of people experience physical symptoms as a result of trauma responses they are unaware of. Through therapy I’ve made a significant improvement to my chronic headaches and tackled the anxiety I developed from being ill. This has helped improve my quality of life but I’m still not well. Those with ME are extremely resistant to suggestions of anything to do with the brain because of past theories of it being ‘all in your head’ or ‘just depression’. People are very sensitive about this, which is entirely understandable given the years of disbelief, dismissal and misunderstanding by the wider world. This was perpetuated further in recent years by the suggest CBT was a suitable treatment when in fact it is only useful in the process of learning to accept and live with your diagnosis, it will not improve your symptoms but potentially could prevent falling into depression as a result of them.

I’m no longer bed bound but my life is limited by my condition and I constantly have to ensure I’m pacing. I seem to have reached the ceiling of the healthiest I can be, so I work hard to maintain that but I know it’s a potential for it to come crashing down at any point. There is so much that has been taken from me because of my illness and I’ve had to come to terms with that. I’m not resentful of anyone who is able to recover, I wouldn’t wish for anyone to have to live with this.

Like @WWLD I’m frustrated by the continued public perception that anyone can recover if they just try harder or try this new thing. Books like Miranda’s aren’t saying she’s found a cure but the fact is most people won’t have read it and will just see a headline about chronic illness and recovery and conclude that’s what it is, further perpetuating a false narrative that causes harm to those who are still ill.

Im happy you’re doing well and am sorry you were misunderstood by those in the community.

The biggest problem with this discussion is the conflation of ME with Chronic Fatigue. These are two different things. CFS means Chronic Fatigue Syndrome, and has been used to refer to ME, although this has long been a disputed use of terminology by the ME community. Chronic Fatigue can be caused by many conditions, as mentioned by PPs and therefore may often be alleviated when those conditions are treated. ME (CFS) has, as a defining criteria, the presence of PEM - Post-exertional Malaise. This means that symptoms are made worse by exertion and this may make the long term level of illness worse. Many people on this thread are referring them as if they are the same thing and I have seen no reference to PEM.
So, whilst I totally understand people who recover from Chronic Fatigue saying that they were able to recover using approaches similar to that detailed by Miranda, this is not appropriate for people with ME. As far as I can see she had Chronic Fatigue caused by Lymes Disease which was misdiagnosed as ME/CFS.