UK Guardian: ME left me bed bound for nearly five years. A potted plant helped me rebuild my life

I read the article in the Guardian. I didn't find it that insulting as the poor woman has clearly been extremely ill and isn't really "recovered" in any meaningful sense of the word. She just got a plant and it gave her a reason to keep going in life.

I think the world is divided into 2 types of people. Those with ME or friends and family members with ME, and those with no experience of ME. The former group will read an article like this and know that nobody recovers from ME because they got given a potted plant. The latter group have zero interest in ME, and won't even read the article. They will move onto far more interesting stories, like the woman with 100 raccoons in her garden!
Articles like this are just cheap filler for the newspaper. They don't influence anyone. Nobody really gives a damn about them.
 
Lou B Lou said:
She is blocking critical tweeters and hiding their tweets.
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I do get the impression that she really means well here. Some of the bad language comes from the Guardian and not her, or maybe tries too hard to be optimistic about a little improvement to a horrible quality of life. I get the frustration but people are being way too harsh on her. It's not ideal and doesn't really help the cause, but this is very far from Paul Garner and his ilk, almost total opposite.

What's especially sad is that sometimes people just want to tell their story, it gets misrepresented, and everyone is unhappy for it. All because of systemic failure that wants to push a particular version of reality. She has improved a bit, she is far from recovered.

It's all mostly damning of how badly medicine has failed us, that what should be a very sad story of loss and grief is turned into inspiration porn, for something that literally no one aspires to. To go back from severe ME to being able to simply find a little joy in life is an experience so completely detached from reality that it can make sense to us. It just won't make sense to the health care professionals and the general public, who will take away from this that "oh, of course, you can simply recover from 'the moods' by finding a bit of joy in life, just like depression". Or whatever. That's their problem. They make it our problem, but it's sad how much infighting this systemic failure and discrimination leads to.
 
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This was the original post I read full of misinformation from a PSYCHIATRIST.

Great story. #MECFS Recovery through gardening. This resonates with the concept of ikigai, a Japanese term meaning “a reason for being."

From a neuroscience perspective, the concept of ikigai is about engaging multiple domains: cognitive, physical, and emotional. I explore this in my video on the neuroscience of ikigai, where I discuss the therapeutic impact of finding purpose-driven activities.
https://twitter.com/user/status/1844523164732436769
 
Exactly re psychiatrist. But she was thanking replies when they congratulated her on her 'recovery'. I think she might have been a bit overwhelmed about her book release to give accurate replies so things were misinterpreted as usual on social media.
 
Mij said:
This was the original post I read full of misinformation from a PSYCHIATRIST.

Great story. #MECFS Recovery through gardening. This resonates with the concept of ikigai, a Japanese term meaning “a reason for being."

From a neuroscience perspective, the concept of ikigai is about engaging multiple domains: cognitive, physical, and emotional. I explore this in my video on the neuroscience of ikigai, where I discuss the therapeutic impact of finding purpose-driven activities.
https://twitter.com/user/status/1844523164732436769
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Psychiatry tends to have a different definition of recovery.
Not necessarily back to as you were before. We've seen this trying to be spun in paediatrics
 
Mij said:
Exactly re psychiatrist. But she was thanking replies when they congratulated her on her 'recovery'. I think she might have been a bit overwhelmed about her book release to give accurate replies so things were misinterpreted as usual on social media.
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I imagine it would be overwhelming to get loads of social media posts.
Personally I am no longer on Xitter as I dislike the environment which has many similarities to being in a crowded stadium. Not conducive to considered discussion.
 
I thought the media were beginning to understand the reality. First the piece in the Times about some quackery, then this, and now a new piece in the Telegraph taking a pop at "sickfluencers" has just appeared.

If you'd like to read something different, there was an article in PLOS Global Health a couple of days ago, apparently written by a consultant at Barts, entitled "Listening to the voices of the medically silenced" (Link | PDF):
Doctors learn to be sceptical of patients in their training. This is even ingrained in medical language with phrases such as “she claimed”, “she denied” commonplace [10]. Patients with conditions for which there are few objective signs, diagnostic criteria and known effective treatments such as fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often report they are dismissed or shut down by doctors [11].
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Diagnosis relies on patient testimony rather than laboratory or radiological investigations, which is viewed as inherently untrustworthy. Doctors prefer certainty–diseases where the pathophysiology is understood, diagnosis straightforward and potentially curable, such as myocardial infarctions [12]. Consequently, patients with conditions such as fibromyalgia experience epistemic injustice and become further marginalised as these receive less research and policy attention, leaving knowledge gaps unfilled.
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However, patients have fought back collectively to be heard and created real change, a prominent example being HIV/AIDS activists. If we are serious about improving healthcare, we must include patients at every level in education, policy, service development and research. They should be offered adequate renumeration, training, supervision and pastoral support, and shown their input has resulted in action.
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To address health inequity, it is increasingly urgent that we listen to and amplify the voices of those who have been historically silenced. This will require a shift in power from those who have benefitted from their silence. Are we ready to listen?
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rvallee said:
I do get the impression that she really means well here. Some of the bad language comes from the Guardian and not her, or maybe tries too hard to be optimistic about a little improvement to a horrible quality of life. I get the frustration but people are being way too harsh on her. It's not ideal and doesn't really help the cause, but this is very far from Paul Garner and his ilk, almost total opposite.

What's especially sad is that sometimes people just want to tell their story, it gets misrepresented, and everyone is unhappy for it. All because of systemic failure that wants to push a particular version of reality. She has improved a bit, she is far from recovered.
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Trish said:
I didn't read the article so negatively. It came across to me as someone who was very sick, gradually improved and while improving found joy in plants which helped her feel more positive.
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I agree with both of you. She has said that she recovered a bit, and that gardening then helped her quality of life. A problem is the slipperiness of the word 'recovered' - 'improved' versus 'cured'.
 
Being facetious, I have over thirty house plants in my home, though that also includes half a dozen or so that belong to my goddaughter who does not have room for them in her current temporary accommodation. So I look forward to a total remission in my ME imminently.

Just one problem, I have lived with house plants all my adult life and my ME is of some thirty years standing. I could not manage all these plants without help with watering and repotting etc. My goddaughter’s plants are in the attic and I may only manage to get up there to check on them myself once a month or even less.

I can understand that for someone new to caring for plants a pot plant may help in reducing your focus to a much smaller scale, helping cope with the confinement of moderate or severe ME, contributing to a sense of mental wellbeing. However that is irrelevant to any underlying health condition.

(PS Some may see my love of plants a psychiatric issue. I confused the invigilators by taking a different plant into the exam room for each of my first degree’s finals, apparently there was nothing about this in the official guidelines. And I have even been known to take a bonsai camping in the Lake District.)
 
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NelliePledge said:
Right but that’s down to the psychiatrist putting their own spin. Nothing to do with the writer.
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And despite the author elsewhere saying she isn't recovered and in the article saying how it was a very slow, gradual process to even make it to the garden for 5 minutes, he decided that he is correct and anyone correcting him is wrong. Apparently a problem of language with recovery, which everyone with chronic illness defines as "no longer ill", but medicine has so thoroughly distorted that it can mean literally anything they want.

So, exactly the same problem as conspiracy theorists. People want to make their own version of reality, and the psychosomatic ideology is basically the ultimate "make the reality you wish it was" process. The moon is a reflector dish for weather manipulation and is the real cause of climate change in a plan by secret lizard people leaders to cull humanity. You can wish yourself ill, and you can wish yourself healthy back again. Not any real difference here. It's all nonsense. Different nonsense. Still nonsense.

Lately I've been veering towards an understanding of knowledge where past or current facts are pretty much entirely irrelevant. They just don't matter. At all. They can always be distorted to fit a narrative. Only the future matters, predictions. If someone can predict an outcome or, better yet, influence an outcome as they predict it would, that matters. People will respect that. Especially if it's possible to make money with it. They will acknowledge it, even if they don't like it. But as soon as a millisecond of time has passed, it doesn't matter anymore. Those facts may as well not have happened. And experts are no different than the general public at it. Not even a little. The pandemic has exposed this flaw whole. It's all so very disappointing.

No wonder so many MDs hate social media. It's exposing them as people who know a lot of stuff, but also talk so much made-up nonsense and mostly fail at making accurate predictions about most things, barely better than a coin toss, if not worse. I don't really see the same in other fields of expertise. Health is just its own beast, since subjective experience is the only thing where expertise is mostly irrelevant.
 
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