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

Jonathan Edwards said:
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.
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Absolutely. Suited them to scratch each others' backs.
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.
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Yes.
 
re GM article; loved that he linked to this

Rapid Response:
Re:History of prejudice

which included
That standoff includes the psychosocial school directing in 1992 that
in patients with ME, the first duty of the doctor is to avoid
legitimisation of symptoms2; in 1994 ME was described by them as merely "a
belief"3; in 1996 they recommended that no investigations should be
performed to confirm the diagnosis4; in 1997 they referred to ME as a
"pseudo-disease diagnosis" 5, and in 1999 they said about ME patients:
"Those who cannot be fitted into a scheme of objective bodily illness yet
refuse to be placed into and accept the stigma of mental illness remain
the undeserving sick of our society and our health service" 6.
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https://www.bmj.com/rapid-response/2011/11/03/rehistory-prejudice-0
 
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I just thought I would point out that, having looked up the quotation cited by Hooper in the rapid response, the article on the treatment process in the CIBA material is from David Mechanic of Rutgers University.
 
While I don't disagree with comments here about the articles mentioned in posts above I personally am going to save the largest share of my gratitude to the people who spoke out on our behalf before covid made all of this so obvious.

I admit that part of the problem would have been getting management to agree to any article telling the truth about the BPS fictional account of ME yet I expect few tried. I suppose this is just how the world works but still. There were people who did speak when it was not so easy.
They have my highest respect.

There still needs to be an accounting in the media of how they aided and abetted what is truly a public health disaster by not doing what is the most central role of journalism -- to (among other things) expose untruth, malfeasance, and political interference & mishandling of public money.
 
Great article. That being said, and not that the article does this, but I think there may be some backlash from long-covid to me/cfs connections, at least at this stage. Those without me/cfs-like symptoms (and the article mentions this is only 1 category) are maybe right to fear the comparisons and stigma. And I hope there isn't because that could be a very bad thing for me/cfs in losing an ally in the long-covid groups.
 
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.
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I think the public and therefore the government would care a great deal more if doctors and other medical professionals had been speaking out about ME/CFS for the past 30 years or more. I come from a medical family and have great respect for many individual doctors (including you and the handful of others who have spoken out) but I feel very let down by the medical profession as a whole.
 
Robert 1973 said:
I think the public and therefore the government would care a great deal more if doctors and other medical professionals had been speaking out about ME/CFS for the past 30 years or more.
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I see what you mean but isn't this expecting things back to front?
It is a bit like expecting Esso and Shell not ensure they do not pollute the sea, without bothering to ask them. If challenged Esso could say 'all we know is that we were asked to find people some oil, if we bothered about the sea others would have done it cheaper'.

Individual medics and scientists are told to 'set out your stall' when applying for jobs (I was, literally) and compete for attracting support. They are not told to work on the most important things.

The parts of the science community that do have a responsibility are the MRC and NIHR. MRC has had ME as a priority since about 2000 and was funding work on muscle metabolism back in the 1980s. I genuinely think that the absence of more biomedical research until now has been the lack of worthwhile studies to do. When I acted as MRC advisor this recent time around the GWAS project was the one thing that looked worthwhile, apart from maybe some actimetry studies.

Perhaps more relevantly, NIHR was deliberately set up by the people's representatives in Parliament to find ways to make health care provision cheap and 'on message' with an emphasis on prevention and keeping people away from expensive care. That was the people's decision, not the medics and scientists, although there was no shortage of politicos ready to be given important sounding titles to run it.

Considering that ME is a relatively uncommon condition I am not sure that it has actually been that neglected. It is just that (a) it has provided very few useful leads and (b) some incompetent people moved in to take advantage of political opportunities in the 1990s. What I was a bit disappointed at was the Monbiot steered completely clear of the incompetence of PACE. People at UCL were doing their best to find metabolic changes in ME in the 1980s. That should not be denied. Good people worked hard on it. The real problem is that the agenda has changed for political reasons. In the 2000s there was a huge expansion of clinics for chronic pain and fatigue as part of an agenda for keeping things low tech. The BOS people fed into that but actually although this was going on all around me at UCH in the 2000s I never heard anything about Wessely or White or PACE. They simply followed the trend I think.

I guess the worry about Monbiot's statement is that the MRC can very reasonably say that it is unfair and that they had tried their best - with special status for the condition. I can see Fiona Watt saying that, Mark Walport, Colin Blakemore. And that means they can avoid the charge that they let through rubbish research.

It is all part of the need for oversight to be done by people other than those who are actually doing the work. And that has to be driven by public demand - because the public is the customer. There has been no public demand - not even to deal with bad cancer death figures and high perinatal mortality.
 
Jonathan Edwards said:
MRC has had ME as a priority since about 2000 and was funding work on muscle metabolism back in the 1980s.
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Presumably that would have been the work of Edwards. The other one. The problem there was that he seemed to believe that if he could find nothing wrong with the muscle, then there was nothing wrong. And "You can cure your effort syndrome if you really want to".

There was no wider perspective provided by those who funded him.
 
Jonathan Edwards said:
Perhaps more relevantly, NIHR was deliberately set up by the people's representatives in Parliament to find ways to make health care provision cheap and 'on message' with an emphasis on prevention and keeping people away from expensive care. That was the people's decision
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It was only the people's decision if the people were informed and consulted, and we weren't.

There has been no public demand - not even to deal with bad cancer death figures and high perinatal mortality.
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People give huge amounts of money to the cancer charities, and put enormous efforts into fundraising. I think that's because those are the bits they can actually control, whereas (a) realising that that government research isn't prioritised on a rational basis and (b) trying to achieve anything via your MP are both very difficult.
 
strategist said:
Outside the UK there's on average even more neglect of ME/CFS, going as far as not even recognizing it. How can one explain that, if not with a systemic problem that affects medical research, medical practice, policy as a whole?
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I am not denying that there is a systemic problem that affects medical research, medical practice and policy. I am simply saying that it is naive to blame scientists and medics any more than blaming fisherman for overfishing.

chrisb said:
Presumably that would have been the work of Edwards. The other one. The problem there was that he seemed to believe that if he could find nothing wrong with the muscle, then there was nothing wrong. And "You can cure your effort syndrome if you really want to".
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Edwards did not believe that until after several years of finding nothing he concluded that there was nothing to find. Remember that I worked on his floor in the Rayne Institute for a couple of years. The people doing that work - David Jones, Joan Round, Mike Rennie, were all excellent and sympathetic scientists. They just ended up finding nothing. David Jones moved elsewhere and tried to continue the work with MR spectroscopy I think but found nothing of note. Richard Edwards said some stupid things in the end but it was not that he had not tried to find things. He would not have studied ME if he did not think he was going to find something.
 
Sasha said:
It was only the people's decision if the people were informed and consulted, and we weren't.
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Sorry but that is back to front. The existence of ME, under whatever name, has been public knowledge for a century or more. The public is consulted every time there is an election. People can elect to have adequate health care and research or to make do with an inadequate disorganised system. I realise that the electoral system is constraining but people were very happy to vote for health care to be marginalised at a time of prosperity.
 
Jonathan Edwards said:
Edwards did not believe that until after several years of finding nothing he concluded that there was nothing to find
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I'm sure that, in a sense, you are right. There is one thing that troubles me, though. The comment about curing effort syndrome was made in a paper in 1986. This view was probably held for some years before that. Can we be sure that papers written after 1986 were not prejudiced by this previously held belief?
 
Jonathan Edwards said:
Sorry but that is back to front. The existence of ME, under whatever name, has been public knowledge for a century or more. The public is consulted every time there is an election. People can elect to have adequate health care and research or to make do with an inadequate disorganised system. I realise that the electoral system is constraining but people were very happy to vote for health care to be marginalised at a time of prosperity.
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I think we might have better government if we had a PR system --- 44% of the vote should get you 44% of the seats not an 80 seat majority. As for the resulting pooling of MP seats; I've found a previous MP to be pretty useless so having a pool to choose from seems OK.

But yes people were happy to see lower taxes; however, when they needed the health service they found it under resourced --- there's a link!
 
Jonathan Edwards said:
Sorry but that is back to front. The existence of ME, under whatever name, has been public knowledge for a century or more. The public is consulted every time there is an election. People can elect to have adequate health care and research or to make do with an inadequate disorganised system. I realise that the electoral system is constraining but people were very happy to vote for health care to be marginalised at a time of prosperity.
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Every time there is an election, we have the option of voting basically for two parties with stances on multiple issues, and those stances can be similar or different, depending on the issue. We only get to vote for a party - we don't get to vote on the individual issue. People don't vote on what to do about the NHS - we are only allowed to vote for a fixed set of positions on a complex of issues - for example, leave Europe + rely on the market to save the planet + reduce regulation, etc.

And which issues get priority is heavily media-driven and party-driven. If neither drive the election to be about the NHS, then it isn't.

Sorry to be persistent about this but I'm politically involved on certain issues and yet constantly frustrated by how difficult it is to do anything about them as a citizen, in the face of the overwhelming power of vested interests and the absence of any useful form of participative democracy such as citizen's juries, properly run referenda, and so on.

Also, I think that seeing the public as not being willing to support the NHS saps the will to do anything about it. Important to face that reality if it's true, but I don't think it is. I think that right now, with such focus on the NHS, is the time to raise the issue.
 
I agree with @Sasha - MP's reflect their parties views and priorities, not those of their constituents.

I struggle to see how people, who aren't involved with healthcare in some way, could possibly be expected to realise there are issues, when even now we are being misdirected by the authorities, and in the UK it's always been the line, from all the 'authorities' including healthcare, that the NHS is the best, envied across the world.

If we have the best, and everyone else envies us for it, then why would anyone be concerned?

This goes to the top, and the middle, and the top of the middle - we are being misinformed - in the latest situation as well as in the past.

How can the 'public' possibly be expected to realise a need to prioritise healthcare when we are constantly being told that the NHS is fantastic, envied by everyone, receiving record levels of investment etc.

The problem isn't with the 'public' the problem is with those misdirecting them, feeding them, placating them, with 'fake news' - the problem is with the ones doing this, the ones who should know the actual state of play, whose job is to do so, those who, if they don't know, are too incompetent to be in post, the problem is with the government.

Both of them have stood, and been elected, with manifestos that say that whilst the NHS os the 'best' the NHS is a high priority, with no other options but what they put forward. Both of them have 'not entirely been forthright' re what actually happens and their promises, but it's a choice between 2 prescripted options, with many other factors involved in who gets voted for.

Both of them, as the current mob are only the current mob.
 
Sasha said:
Sorry to be persistent about this but I'm politically involved on certain issues and yet constantly frustrated by how difficult it is to do anything about them as a citizen, in the face of the overwhelming power of vested interests and the absence of any useful form of participative democracy such as citizen's juries, properly run referenda, and so on.
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I'm not disagreeing with you – or anyone else for that matter – but my MP, and his very long-standing predecessor, would say exactly the same. Just swap the word 'citizen' for 'MP'.

So much of the work and energy of a political party is focused on the drive to be seen to oppose other political parties, irrespective of what the other actually says or does. Prominent politicians who fail to challenge others' policies are presented as weak, and this is amplified by the media; the system is one of the best barriers to real progress that it's possible to imagine.
 
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