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

Comments section mostly positive but..

Yet ME/CFS has been disgracefully neglected by science and medicine.

This is simply bullshit. The lack of a discovery of a mechanism, or of effective ways to manage it, is not for want of trying.

And do you remember what happened to the leading researcher from London who tried to study it? He won't go near it now, and who could blame him.

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    DrY213
    emmmgeee
    19 minutes ago

    0
    I've heard similar stories of researchers being harassed by M.E. activists, it's similar to what happened during the AIDS crisis and though it's obviously completely counterproductive, probably just reflects desperate patients frustrated at the lack of control over their lives and the way their illness is viewed.
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Would anyone with an Guardian account like to put them right?
 
John Mac said:
Comments section mostly positive but..



Would anyone with an Guardian account like to put them right?
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I think the comment tells it all. What researcher would give up researching because the patients were angry? And if it was a psychiatrist that would be completely absurd. I don't think this sort of comment does that much harm and may expose the ridiculous stance of the BPS crowd.

I actually think there is a hint of naivety in Monbiot's statement - that ME has been neglected by science and medicine. If the public leave scientists and doctors to scrabble for what resources they can, having asked them to solve all these problems, then it is difficult to hold 'science' or 'medicine' responsible. I decided to become an academic doing research rather than just treat patients. I rather innocently thought that if I had a good idea to piursue it would be funded. No way. Most researchers spend the majority of their working hours fighting for scraps of funding. Monbiot's main point is closer to the mark - that we have a government that does not care a damn.
 
Is lack of care really an adequate explanation for the fact that historically no country has seriously attempted to help us patients?

In my opinion attributing negative psychological traits to a large group of people (the people in the governments around the world) doesn't work as explanation.
 
John Mac said:
Comments section mostly positive but..



Would anyone with an Guardian account like to put them right?
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I do personally know a professor who had to shelve her research into viral involvement in M.E. 20 years ago due to the actions of activists. The grant money was lost and she never researched M.E. again.

That said, these are very rare occurrences and obviously aren't a reason for why M.E. research stalled.
 
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It's an excellent article isn't it. Very skillful to be able to cover so much in so few words. I felt quite emotional reading it. I really respect George as a journalist and subscribe to his mailing list so it feels very validating to hear him write about ME. I think I'll contact him via his website to say thank you when I have some energy!
 
strategist said:
Is lack of care really an adequate explanation for the fact that historically no country has seriously attempted to help us patients?

In my opinion attributing negative psychological traits to a large group of people (the people in the governments around the world) doesn't work as explanation.
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Yes, it is sometimes a lack of care, but other times inappropriate treatments masquerading as care, which can be closer to borderline abuse.
 
strategist said:
Is lack of care really an adequate explanation for the fact that historically no country has seriously attempted to help us patients?
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I would say so. Surely if no government has attempted to help patients they must not care. By definition if they cared they would have done something.

I agree that responsibility can get spread too thin and one might ask exactly who it is that is not caring but pretty much by definition if the politicians in charge cared they would do something. Unless of course they decide that this would upset people who elected them who they assume do not care. I don't really mind which it is. Whoever is ultimately the motivation of public policy clearly did not care.
 
Jonathan Edwards said:
I would say so. Surely if no government has attempted to help patients they must not care. By definition if they cared they would have done something.
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I think it's more likely that the politicians have been manipulated by BPS people, mostly with misleading research papers.

What BPS people have always said (usually between the lines) that ME/CFS is a made up illness by people who are very confused and in need of psychotherapy and an exercise therapist. If one accepts this as true, then there is no need to invest anything into biomedical research.

All these years the biomedical and the biopsychosocial approach have been in competition and while the biomedical side has honestly reported their null results or corrected false claims (e.g. XMRV) the BPS side has delivered a constant stream of exaggeration and outright lies that on superficial examination look credible. The logical consequence is that to an ignorant observer like the average politician and their science advisors, the biomedical approach just didn't look like it could deliver any solutions while the BPS side looked like it was making progress and delivering results.
 
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I would say that "lack of care" is simply the absence of care, which is bad enough in itself of course. But for pwME medical interventions can be much worse than absence of care, because such treatments are active interventions that are deeply flawed.

Doing nothing to a person with hypothermia is lack of care, whereas pouring icy water over them would be a flawed intervention.
 
strategist said:
What BPS people have always said (usually between the lines) that ME/CFS is a made up illness by people who are very confused and in need of psychotherapy and an exercise therapist. If one accepts this as true, then there is no need to invest anything into biomedical research.
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I don't buy that. If the public and the government cared it would be transparently obvious to them that nothing useful was being achieved. Caring means being prepared to check that things are the way they should be - like caring that rivers are not polluted or that airline pilots are properly trained.

The BPS people really only played an opportunistic role to my mind. The government wanted a cheap way to sweep things under the carpet and reduce social security benefits so some psychiatrists piped up that they could deal with it.

Barry said:
I would say that "lack of care"
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I was using the word 'care' in the sense of 'I don't care a damn' - i.e. in the sense of having no interest.

The general point that I am trying to make is that if you work in health care for long enough you get the clear message that the public and government by and large do not really care whether or not they have put in place adequate medical systems. As of this week that has become something of a stark reality, unless you live in Australia or New Zealand. There are huge complaints if the broadband is a bit slow here and there but almost nothing about there not being the resources to eat with basic medical needs.
 
Jonathan Edwards said:
The general point that I am trying to make is that if you work in health care for long enough you get the clear message that the public and government by and large do not really care whether or not they have put in place adequate medical systems. As of this week that has become something of a stark reality, unless you live in Australia or New Zealand. There are huge complaints if the broadband is a bit slow here and there but almost nothing about there not being the resources to eat with basic medical needs.
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But how do we know what the public care about? The public don't have a mouthpiece, and the reporting of our views in the media is not unbiased.
 
Obviously this information is available from youtube.

People care about boots/shoes, unboxing of items they will never own, and kittens.

They do not care about healthcare as videos about it are neither aspirational nor do they make them feel good.
 
Sasha said:
But how do we know what the public care about? The public don't have a mouthpiece, and the reporting of our views in the media is not unbiased.
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The public have mouthpieces - they are called members of parliament, whom they elect and whom they can lobby locally. My neighbourhood constantly lobbies our MP about dustbins and about burglaries and about planning permissions and having mosques built in Golders Green and about car parking and about airports and noise but nobody ever says anything about the fact that our hospitals have no beds to deal with basic surgery etc.

The current situation is instructive. There was a specific point where Keir Starmer suddenly realised that the policy on Covid was disastrously wrong. Up to that point he had been happy to believe the government advisors. None of the political parties in the UK has been adequately informed about the healthcare situation.

It is completely crazy that someone should have to wait two months for an appointment to be assessed for a possible diagnosis of rheumatoid arthritis.

And I know that the public do not really care because I chat to people regularly and they are completely unaware that health care funding is grossly inadequate. A professor of anatomy friend of mine who used to work for me was recently shocked to hear that Norway spends nearly three times as much per head on healthcare as the UK. He thought the UK had the best system in the world still. He thought I was going to say how much more we spent. People simply have no idea - presumably because they cannot be bothered to inform themselves.

The current situation in medical research is so gummed up with politics and bureaucracy that almost nothing useful gets done. Productivity has taken a nosedive. I just think it is naive to say 'science' and 'medicine' have ignored needs of people. The scientists and medics are struggling just to get basic treatment to people and to find money to pay their admin overheads. Almost every time I chat to a fellow scientist online now they sound as if they are pretty much ready to give up because nothing works and they are under so much pressure just to do day to day things.
 
Jonathan Edwards said:
The public have mouthpieces - they are called members of parliament, whom they elect and whom they can lobby locally.
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I think that's an over-optimistic view of MPs! They aren't our mouthpieces. They're their own, and their party's. The best we can do is lobby them but we can't force them to adopt our positions and speak up on our behalf.

My neighbourhood constantly lobbies our MP about dustbins and about burglaries and about planning permissions and having mosques built in Golders Green and about car parking and about airports and noise but nobody ever says anything about the fact that our hospitals have no beds to deal with basic surgery etc.
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I've never lobbied my MP about the NHS but I would if I was aware of the issues. But I'm not. It's not that I don't care, it's that I don't know, and that's an issue with the media, which is not unbiased or free of government influence.

The current situation is instructive. There was a specific point where Keir Starmer suddenly realised that the policy on Covid was disastrously wrong. Up to that point he had been happy to believe the government advisors. None of the political parties in the UK has been adequately informed about the healthcare situation.
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Isn't that another indication that it's not knowing, not not caring?

And I know that the public do not really care because I chat to people regularly and they are completely unaware that health care funding is grossly inadequate.
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Again, not knowing! Not not caring.
 
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Jonathan Edwards said:
The public have mouthpieces - they are called members of parliament, whom they elect and whom they can lobby locally. My neighbourhood constantly lobbies our MP about dustbins and about burglaries and about planning permissions and having mosques built in Golders Green and about car parking and about airports and noise but nobody ever says anything about the fact that our hospitals have no beds to deal with basic surgery etc.

The current situation is instructive. There was a specific point where Keir Starmer suddenly realised that the policy on Covid was disastrously wrong. Up to that point he had been happy to believe the government advisors. None of the political parties in the UK has been adequately informed about the healthcare situation.

It is completely crazy that someone should have to wait two months for an appointment to be assessed for a possible diagnosis of rheumatoid arthritis.

And I know that the public do not really care because I chat to people regularly and they are completely unaware that health care funding is grossly inadequate. A professor of anatomy friend of mine who used to work for me was recently shocked to hear that Norway spends nearly three times as much per head on healthcare as the UK. He thought the UK had the best system in the world still. He thought I was going to say how much more we spent. People simply have no idea - presumably because they cannot be bothered to inform themselves.

The current situation in medical research is so gummed up with politics and bureaucracy that almost nothing useful gets done. Productivity has taken a nosedive. I just think it is naive to say 'science' and 'medicine' have ignored needs of people. The scientists and medics are struggling just to get basic treatment to people and to find money to pay their admin overheads. Almost every time I chat to a fellow scientist online now they sound as if they are pretty much ready to give up because nothing works and they are under so much pressure just to do day to day things.
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Sadly I agree with everything you said and if I was better informed then I'd support it even more strongly.

My neighbour (a medical physicist) has pointed out to me that bangs for bucks the NHS delivers an incredible amount - an acquaintance has pointed out that compared to Slovenia the UK spends less on health. So the NHS needs to be prioritised - more bucks.

A friend works in Alzheimer's research in the US, via mutual friends I've heard of the struggle to fund research - Alzheimer's threatens to bankrupt counties so if that isn't funded then you can see the problem.

From memory you've (Jonathan) summed up the problem previously - people don't care until they're in need of health care --- this forum is made up of an unrepresentative group of people --- we care because we/our family members need support.
 
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