George Monbiot on ME/CFS, PACE, BPS and Long Covid

I think it's a very good article. He manages to raise a lot of key issues in quite a short piece, and the links within the article expand on the information for anyone actually interested. I hope a lot of medical and political people read it and want to know more.

I fear a public inquiry may be the wrong vehicle, as there are powerful voices who will argue the case for rehab and defend CBT/GET. A judge brought in to gather information and draw conclusions would be likely to 'both sides' the issue rather than seeing the truth.
 
I fear a public inquiry may be the wrong vehicle, as there are powerful voices who will argue the case for rehab and defend CBT/GET. A judge brought in to gather information and draw conclusions would be likely to 'both sides' the issue rather than seeing the truth
And this has always been the problem.

So, in addition to everything else we have been denied, including the most basic human right to healthcare and dignity, we are also, by default, denied access to justice and change.


Edit: This is why we pin our hopes on science and it the same reason biomedical science has not been adequately funded
 
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A few years ago, when the Guardian was regurgitating SMC propaganda and giving column inches to prominent BPS advocates, getting this type of article published in this newspaper seemed almost inconceivable. It is testament to the progress that has been made that George has written this and his previous articles on ME/CFS. Many members of this forum have contributed to that progress and some have contributed directly to his articles – providing content and giving feedback on drafts.

I am hugely grateful to him for his advocacy, for his ability to communicate clear messages about the issues, and for his diligence in trying to get the details right. I hope this article will lead to wider discussion and put pressure on governments and other bodies to effect positive change.

The Guardian will inevitably get a flood of replies from the false hope pedlars and braintrainers - I can only hope they confine them to the letters page rather than a right-to-reply article.
 
A public inquiry sounds like it could give publicity and accountability we want. So I thought I’d try to explain a bit more on why it is not what we need. Hopefully this helps people understand the position, it’s largely based in the weird nuances of process and some political geekery.

In short they are long slow, expensive and often sprawling processes which don’t necessarily lead to anything. As @Trish covers they often have a bit of a ‘listening to all sides’ and weighing up different arguments aspect and they’re can be used to kick things into the long grass rather than make decisions.

Do we really want to hear ‘we are awaiting the results of the public inquiry’ in response to every question or call for change for the next 5+ years and also spend the millions we could instead use to fund SequenceME or other research?

The IfG has written extensively on the problems and the HoC library has a recent report too
https://www.instituteforgovernment.org.uk/public-inquiries

So what could we do instead?

IMHO we need to be clearly focused on the lack of care for the most severe, why this and avoidable harms and tragedies continue to happen, what processes the NHS has in place to deal with the most severely affected and if they don’t (we know they don’t) then they need to fix that.

This is doable now. We largely need the will and someone to be made responsible for change. That would have a strong clear message of recognition and intent, improve the situation for some and give us all something to build upon. Make solving this someone’s job, both politically (assign a minister) and practically (assign a senior civil servant and someone in NHS England and each of the other regions to ensure ICBs deliver).

We have had inquests and prevention of future deaths reports already. They should have clout but need acting upon. The responses from the relevant parts of the NHS needs to be scrutinised, the message that continuing as things are is unacceptable made clear and anything positive rolled out nationally.

A focussed parliamentary select committee inquiry could give as much public visibility as a public inquiry and could also bring in experts and ask some hard questions of government and the NHS. This would have the advantage of being parliamentary rather than ministerial and cross party too.

The Health Secretary could just set up a similarly focused or time limited review if they deemed this issue important. They clearly haven’t until now.

Maybe there are other NHS processes too, I’m not as familiar or sure how useful they’d be. But ideally, if we want change, we’d remove finger pointing and blame and focus on the systemic problems and implementation of fixes. But someone needs to be given responsibility for doing so, responsibility for us. That’s the heart of the problem and why we’re left, we are nobody’s problem.
 
Thank you again, George, for at least giving a shit and trying.

A public inquiry wont work while the people subverting the entire process are still in the major positions of power. What you have to do is name them and expose what they are doing. You can't solve a process that is being driven and funded by government with more government, you have to make it publicly unacceptable to continue abusing the patients in order to save on the disability and health bills. This is not just medicine doing this, its being driven by government and supported by every pillar of society including the legal and justice system. Its a great crime against humanity.
I think it's a very good article. He manages to raise a lot of key issues in quite a short piece, and the links within the article expand on the information for anyone actually interested. I hope a lot of medical and political people read it and want to know more.

I fear a public inquiry may be the wrong vehicle, as there are powerful voices who will argue the case for rehab and defend CBT/GET. A judge brought in to gather information and draw conclusions would be likely to 'both sides' the issue rather than seeing the truth.
A public inquiry could work if the right people are running it and asking the right questions.

But I am not optimistic, and certainly not in any useful time frame.

This is what totally irks me. Defaming very ill people rather than finding what's causing the illness and treating it has cost billions, because it causes loss of a notable part of the work force; it would have actually been cheaper by now to have taken the disease seriously for what it is, a disease and not 'anxiety' or whatever, found the cure, and got people back to work.
It is bizarre beyond words. Even from the most cynical and mercenary angle the only sane practical answer is to find actual solutions. Yet it seems that everything is being done to stop that happening, to instead just perpetuate the gross deceit and failure, and make us keep paying even more for it.

This is a level of sustained corruption and fraud, and outright hostility, abuse, and cruelty that is rare indeed anywhere, anytime. Frankly, it is bordering on outright sadism at times, with some seeming to take great perverse delight in publicly denying, humiliating, and hurting us as much as possible, and then blaming us for it all.

It is a hate crime, par excellence.
 
A minor point but I was impressed how George got across the idea that someone can be horribly unwell then PEM is added on top of that, sometimes information can give the false idea that we are OK in between the crashes which is not universally true, particularly for the more severe.

Though the article raised the issue of the very severe I think we can not stress enough that in the UK, but also more widely, the very severe are effectively excluded from health care, perhaps the opposite of what we see in other conditions, and those that are unlucky enough to be admitted (with eating and swallowing issues) to hospital face care that may watch them die of starvation and dehydration.
 
We have had inquests and prevention of future deaths reports already. They should have clout but need acting upon. The responses from the relevant parts of the NHS needs to be scrutinised, the message that continuing as things are is unacceptable made clear and anything positive rolled out nationally.

A focussed parliamentary select committee inquiry could give as much public visibility as a public inquiry and could also bring in experts and ask some hard questions of government and the NHS. This would have the advantage of being parliamentary rather than ministerial and cross party too.
I think a parliamentary select committee inquiry is a better idea. It was the science and technology select committee inquiry on research integrity in 2017/18 which forced researchers who received public funds for research to publish all results of the research, even if they were null results, among many other recommendations.
 
A public inquiry sounds like it could give publicity and accountability we want. So I thought I’d try to explain a bit more on why it is not what we need. Hopefully this helps people understand the position, it’s largely based in the weird nuances of process and some political geekery.

In short they are long slow, expensive and often sprawling processes which don’t necessarily lead to anything. As @Trish covers they often have a bit of a ‘listening to all sides’ and weighing up different arguments aspect and they’re can be used to kick things into the long grass rather than make decisions.

Do we really want to hear ‘we are awaiting the results of the public inquiry’ in response to every question or call for change for the next 5+ years and also spend the millions we could instead use to fund SequenceME or other research?

The IfG has written extensively on the problems and the HoC library has a recent report too
https://www.instituteforgovernment.org.uk/public-inquiries

So what could we do instead?

IMHO we need to be clearly focused on the lack of care for the most severe, why this and avoidable harms and tragedies continue to happen, what processes the NHS has in place to deal with the most severely affected and if they don’t (we know they don’t) then they need to fix that.

This is doable now. We largely need the will and someone to be made responsible for change. That would have a strong clear message of recognition and intent, improve the situation for some and give us all something to build upon. Make solving this someone’s job, both politically (assign a minister) and practically (assign a senior civil servant and someone in NHS England and each of the other regions to ensure ICBs deliver).

We have had inquests and prevention of future deaths reports already. They should have clout but need acting upon. The responses from the relevant parts of the NHS needs to be scrutinised, the message that continuing as things are is unacceptable made clear and anything positive rolled out nationally.

A focussed parliamentary select committee inquiry could give as much public visibility as a public inquiry and could also bring in experts and ask some hard questions of government and the NHS. This would have the advantage of being parliamentary rather than ministerial and cross party too.

The Health Secretary could just set up a similarly focused or time limited review if they deemed this issue important. They clearly haven’t until now.

Maybe there are other NHS processes too, I’m not as familiar or sure how useful they’d be. But ideally, if we want change, we’d remove finger pointing and blame and focus on the systemic problems and implementation of fixes. But someone needs to be given responsibility for doing so, responsibility for us. That’s the heart of the problem and why we’re left, we are nobody’s problem.
Good points. Absolutely nothing has come of the revelations from the covid inquiry, nobody has been punished and the NHS is still acting as if covid is spread by droplets as official policy, as was revealed at the inquiry.
 
I thought this was a very well written article. Very grateful it's been written.

I'm mixed on the public inquiry line because it is true in a moral sense. It's just not the best tactics for us in terms of getting safe care and the progress that will bring treatments quickly.
 
I'm mixed on the public inquiry line because it is true in a moral sense. It's just not the best tactics for us in terms of getting safe care and the progress that will bring treatments quickly.
I agree. I felt it was reasonable to include it in the article as it highlights the seriousness of the scandal but it probably wouldn’t help at the moment.

A focussed parliamentary select committee inquiry could give as much public visibility as a public inquiry and could also bring in experts and ask some hard questions of government and the NHS.
This seems like a good idea. I wonder if this is what we should be lobbying for. Perhaps something to raise with ForwardME.
 
A minor point but I was impressed how George got across the idea that someone can be horribly unwell then PEM is added on top of that, sometimes information can give the false idea that we are OK in between the crashes which is not universally true, particularly for the more severe
Very true.

I also want to acknowledge and praise the graphic artistic image attached to the article. Could have just gone with usual stock photo of an exhausted person as so many do.

This image mirrored the content of the article and reinforces the message
 
I’ve just remembered that I submitted a formal proposal for a Health Select committee inquiry (with some input from Margaret Mar) about 10 years ago when Sarah Wollaston was chair. She warned me in advance that they receive hundred of proposals and so the probability of success was low.

In retrospect, I can see that my proposal was weakened by the emphasis that I put on the evidence of biomedical abnormalities and it would have almost certainly be counterproductive if my proposal had been accepted at that time.

However, things have moved on since then, so I wonder if might be worth reconsidering. Layla Moran is now the chair of the committee and I seem to remember she has been helpful to people with ME/CFS (although I can’t remember the details).
 
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George Monbiot on BlueSky:

“Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you

“With great thanks to the hundreds of people who gave me their testimonies. If I hadn't said "stop" after a few hours, it might have been thousands. The sheer scale of this scandal is hard to get your head around.”


 
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