The Guardian by George Monbiot: Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen?

[Countrygirl]

https://www.theguardian.com/comment...eve-bothby-oneill-me-chronic-fatigue-syndrome

Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen?​

George Monbiot

Chronic fatigue syndrome is as physiological as a broken leg. For the sake of those who have it, we must learn all we can from this tragic case
Fri 18 Oct 2024 06.00 BST
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How could this happen in the 21st century? This question could apply to many issues, but this one sends you reeling. A brilliant and lively young woman with a common illness was repeatedly disbelieved, dismissed and given inappropriate treatment, until she starved to death. It is a terrible result of the most remarkable situation I’ve ever encountered in either medicine or journalism.
Last week, the coroner at the inquest into the death of Maeve Boothby O’Neill published her damning report on the prevention of future deaths. Maeve was suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition afflicting hundreds of thousands in the UK. ME/CFS robs those who have it of energy. Severe cases can shut down every aspect of their lives.


We now know this illness is as physiological as a broken leg. In many cases it seems to be triggered by viral infection. Scientists are just beginning to unlock the causes of the disease: for the first time, blood markers appear to have been found.
Maeve died in 2021 at the age of 27. The inquest heard that she faced a “culture of disbelief” in the health service. Dr William Weir, a consultant specialising in ME, had warned that many of the staff Maeve saw “still hold an outdated understanding that ME/CFS has psychological causes”. They attributed the symptoms to “deliberately perverse behaviour”. Maeve was offered cognitive behavioural therapy and graded exercise therapy that made her condition worse.
Though her inability to eat was entirely physical, she was placed on a ward for people with eating disorders. Appallingly, one consultant considered sectioning her under the Mental Health Act. The coroner ruled that provision for patients with severe ME “was and is nonexistent”.
Such treatment is all too familiar to ME/CFS patients. But why? How did a mistaken view – that the illness is largely psychological – come to prevail? The story harks back to one of the strangest political groups ever to have emerged in the UK.

The Revolutionary Communist party (RCP) was one of many leftist groupuscules to emerge in the 1970s. But it distinguished itself with a cruel and brutal libertarianism. It campaigned against bans on tobacco advertising, child sexual abuse images, landmines and the ownership of handguns. It claimed that animals have no rights, that global heating is a good thing, that environmentalists are like Nazis. It attacked strikers and gay rights campaigners. By taking extreme rightwing positions while calling itself left, it wrongfooted almost everyone...........................................................................

 

[Viala]

Blaming some political party 50 years ago for what is happening now is another form of gaslighting and it's shifting the blame towards other people. Where is the current government? I don't like this last section quoted, politicians in many countries use this rhetoric to blame the preceding parties for everything, meanwhile they do nothing themselves to change things.

Why can't they change it? Are they so bad at what they're doing that even if they are in power, they can't change anything? So we don't need them if they are useless. I also don't like mixing here things like environmentalism, sexual abuse and orientation, ME/CFS has nothing to do with that and it will only divide people further reading the article and shift the focus from the main problem, which is current governments' reluctance to act.

It's not THAT DIFFICULT to listen to sick people that have been telling everyone that it's a physical disease and to listen to other doctors and scientists who have been saying this for a long time. It's not that difficult to introduce mandatory training to doctors and to ban dismissing ME/CFS and ban claiming it's psychological. It's not that difficult to create places where we can get help and some agency where we could write complains about abusive doctors. It can be written in one law act and be fully functional within one year. But somehow, somehow it's not possible, because half a century ago communists where in charge and also some few not docile enough sick people were a little angry.

So it's good that we see more articles about what happened, but this is not net free article, it has also another agenda, which is not ok. They also called some ME/CFS people abusive, in an article about a young women starved to death by public medical care. That's classical DARVO. They shouldn't even mention that here. It's suggesting somehow that we are the problem, it's subtle but people reading this article will remember that, meanwhile the main blame gets diffusion of responsibility.

It's about word associations, we read:
'... that ME/CFS patients were irrationally refusing treatment and abusing those who offered it'
while it should be
'doctors have abused ME/CFS patients for years and harassed them when they rightfully refused to participate in torturous exercises and informed doctors that these procedures were harming them'.

I find this article highly manipulative.

 

[Hip]

I find this article highly manipulative.

Manipulative, in what way?

This is an excellent article that details how the Science Media Centre, which has a lot of press influence, is still pushing the "all in the mind" psychogenic and biopsychosocial view of ME/CFS (not surprising given chief "all in the mind" proponent Simon Wessely is a founding member of the SMC).

The SMC's stance on ME/CFS thus is a significant factor which hinders the necessary change in understanding of ME/CFS. Many newspapers take their cue from the SMC, and if the SMC are saying ME/CFS is "all in the mind", that is bad.

Journalist George Monbiot has also written other good articles on ME/CFS.

 

[Pearshaped]

Blaming some political party 50 years ago for what is happening now is another form of gaslighting and it's shifting the blame towards other people. Where is the current government? I don't like this last section quoted, politicians in many countries use this rhetoric to blame the preceding parties for everything, meanwhile they do nothing themselves to change things.

Why can't they change it? Are they so bad at what they're doing that even if they are in power, they can't change anything? So we don't need them if they are useless. I also don't like mixing here things like environmentalism, sexual abuse and orientation, ME/CFS has nothing to do with that and it will only divide people further reading the article and shift the focus from the main problem, which is current governments' reluctance to act.

It's not THAT DIFFICULT to listen to sick people that have been telling everyone that it's a physical disease and to listen to other doctors and scientists who have been saying this for a long time. It's not that difficult to introduce mandatory training to doctors and to ban dismissing ME/CFS and ban claiming it's psychological. It's not that difficult to create places where we can get help and some agency where we could write complains about abusive doctors. It can be written in one law act and be fully functional within one year. But somehow, somehow it's not possible, because half a century ago communists where in charge and also some few not docile enough sick people were a little angry.

So it's good that we see more articles about what happened, but this is not net free article, it has also another agenda, which is not ok. They also called some ME/CFS people abusive, in an article about a young women starved to death by public medical care. That's classical DARVO. They shouldn't even mention that here. It's suggesting somehow that we are the problem, it's subtle but people reading this article will remember that, meanwhile the main blame gets diffusion of responsibility.

It's about word associations, we read:
'... that ME/CFS patients were irrationally refusing treatment and abusing those who offered it'
while it should be
'doctors have abused ME/CFS patients for years and harassed them when they rightfully refused to participate in torturous exercises and informed doctors that these procedures were harming them'.

I find this article highly manipulative.

I think George monbiot was and is well meaning, he has some other good (!) articles.
but you‘ve got a point here that some things better should not have been mentioned, and I share your concern that the wrong details will be left in people‘s minds.
That is actually a concern I often have. Some people think every article will help us, well history shows it doesnt..

I think Monbiot knows things got in the wrong direction over time but wonder if he grasps that its first and foremost not politics but Drs minds that need to change now and almost everything would solve itself..

 

[BrightCandle]

In the inquest there was some suggestion that various doctors and nurses held psychology concerns around Maeve's condition, a few notes here and there and some decisions that weren't justified sufficient otherwise depending on how much you believe the doctor and nurses testimonies. Maeve died because they refused to feed her via a tube. They held the belief that TPN tube feeding would rapidly lead to sepsis and she wouldn't survive that sepsis infection. They dismissed the use of PEG/PEJ feeding as suggested by William Weir. As such the doctors in charge of her care believed her death was not preventable.

I don't personally agree since we have all seen Whitney survive on initially TPN, get sepsis and survive on antibiotics and then move to PEJ feeding. We also know of other patients in the UK who have survived similar interventions and are fed at home this way.

The idea was raised by Sean O'Neill at the inquest that psychological views were the cause but the amount of evidence heard at the inquest for that was actually small. I think it played a part in their failure to track food intake, in their failure to prescribe sufficient nutrition and their failures to avoid PEM or take it into account properly in her care. Gastroenterology made a flawed analysis of the disease and the options available to them.

Its something I think a lot of the press coverage is getting wrong.

 

[Viala]

It's not about the topic, but how it is written. Keywords are crucial, that's how media and politicians operate today because they know how human mind works. That's why we hear 'climate change' so often, it's like advertisement. Someone can write well and still mislead people. There should be hundreds of articles about medical abuse, using these specific words. Yet the word abusive was associated here mostly with ME/CFS folks and not just once.

The SMC's stance on ME/CFS thus is a significant factor which hinders the necessary change in understanding of ME/CFS. Many newspapers take their cue from the SMC, and if the SMC are saying ME/CFS is "all in the mind", that is bad.

Someone approved those SMC guys. The government has their hands tied and can't do nothing for decades. They were quick during covid.

 

[Viala]

I think George monbiot was and is well meaning, he has some other good (!) articles.
but you‘ve got a point here that some things better should not have been mentioned, and I share your concern that the wrong details will be left in people‘s minds.
That is actually a concern I often have. Some people think every article will help us, well history shows it doesnt..

I think Monbiot knows things got in the wrong direction over time but wonder if he grasps that its first and foremost not politics but Drs minds that need to change now and almost everything would solve itself..

I am glad that you can see that as well.
I guess the solution here is the law needs to be changed and that's what government should do. Somehow they didn't do anything for decades, it's nothing new. So why they didn't do anything. Is it the fault of people in NHS, NICE, SMC? Yes, but who are they reporting to? Someone sanctioned them and keeps them there all the time. My take is it's as political as medical.

The only way doctors will change their behaviour is when they will be obliged to do so by law. Only the government can do that. By law doctors need to follow the procedures. Make psychologising ME/CFS illegal and the problem will be gone overnight. PEM and 6 months fatigue citeria are quite clear to be enough to propose ME/CFS diagnosis and provide care. Make GET and anything resembling it illegal as well, unless the patient feels well and wants to try it.

It is not possible in a logical world to consider this disease as psychological for so long. These people in power are not ignorant by keeping it like this, and as long as no one will address the main issue, which is that it's all happening with government's approval no matter what party is it, nothing will change or it will change very slowly.