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

Jonathan Edwards said:
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.
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I think this represents how research funding is organized traditionally in the UK. Academics come up with ideas and put them to the various review boards and then they get funded or not. Its not a proactive approach to identifying areas that are important and doing things to encourage research in these areas - this is what I think is needed.

With DecodeME it was slightly different because this came from a proposal from the CMRC put to the MRCs strategy board who were particularly keen on the GWAS part.

I think the MRC have tried to do a bit for example encouraging the CMRC but they don't seem to have done much to really aim to really build capability in particular research areas where it is lacking.

I went to a talk a couple of years ago where a different research council I don't remember much of what was said but I do remember that they had different funding mechanisms such as the review boards along with special calls and a comment that different research areas used the different mechanisms. I also have memories of initiative so try to bring academics (and industry) together in areas that were considered important and where multidisaplinary research was thought valuable.

So I've long wondered if the MRC could take a more strategic approach to research (and they may do behind the scenes) rather than relying on getting good proposals in areas where people aren't working. Good research proposals will come when good researchers are encouraged to look into ME and where there is good opportunity for funding to make the effort worthwhile (and I don't mean funding bad research).
 
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 contacted my MP yesterday and included a link to George Monbiot's article. He replied helpfully. He has already been useful in Parliamentary debates, and in signing the letter to the Lancet.

I think we need to pursue more effective advocacy with our elected representatives. We are not going to get an immediate response: it will take work but long covid will involve people in every constituency so it's possible that MPs will be more open to contact. George Monbiot's article is an excellent starting point for anyone wanting to contact their MP. We don't necessarily need a formal campaign. Individuals can do this.
 
The researchers failed to assess a single patient or interview a single doctor. Their conclusions were largely based on one observation: that the syndrome affected more women than men. Therefore, they reasoned, it was likely to be psychosomatic.

In other words, this wasn’t science but misogyny. In the 1990s, the condition was characterised by some doctors as a “belief” and a “pseudo-disease”. Patients were dismissed in the media as malingerers, their illness characterised as “yuppie flu”.
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George Monbiot cleverly avoids the word "psychological" in the above section, and in the whole article. Which doesn't allow anyone to come back with that nonsense about psychological v. physical, or psychological illnesses being stigmatised by ME sufferers. Instead he uses "psychosomatic", "belief", "pseudo-disease" and "malingerers". A good example of how to discuss the issues without walking into the trap posed by the word "psychological", all its baggage, and the tiresome and predictable misdirections of the BPS brigade. Just don't use the bloody word, there are plenty of others to describe the abuse we've had to face.
 
I am a bit tired having driven to London to take up an offer of Pfizer vaccine first dose somehow wangled by a relative (also a doctor) under them with two different life threatening illnesses who was high priority - or maybe just because they had screwed up calling people in having opened the freezer full of vaccine - who knows.

But at this point I would simply say
1. I agree with all the points being made. It is very complicated.
2. @Sasha said
Sasha said:
People don't vote on what to do about the NHS
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and I guess in a nutshell that is my point. If this pandemic gets any more out of hand we are going to see many millions dead and patterns of life change out of all recognition for maybe half a century. And all because we threw away the knowledge we had in the 1970s about infectious disease and decommissioned all the fever hospitals and, more importantly, our political representatives thought that flights to Lanzarote would be more vote-catching than saving lives.

Why didn't people put health care at the top of their priorities?
I don't pretend to know the answer.
 
Another angle: I was really querying whether Monbiot was taking an easy way out dissing scientists and medics.

Because the paper he writes for, the Guardian, has done its darnedist to support the sort of touchy feely BPS rubbish that is the real problem.

I guess the point is that you cannot have it both ways. You cannot say that science is rubbish what matters is people and then turn round and say why haven't the scientists looked after the people.
 
It seems that it's the scientists turn to explain how we got into a situation where ME/CFS has been neglected and nobody involved in pandemic modeling predicted long covid.

To me the best answer as usual seems to be BPS influence. They succeeded in trivializing inconvenient problems and these are two of the outcomes.
 
Jonathan Edwards said:
I am a bit tired having driven to London to take up an offer of Pfizer vaccine first dose somehow wangled by a relative (also a doctor) under them with two different life threatening illnesses who was high priority - or maybe just because they had screwed up calling people in having opened the freezer full of vaccine - who knows.
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Congratulations on getting a jab!

more importantly, our political representatives thought that flights to Lanzarote would be more vote-catching than saving lives.

Why didn't people put health care at the top of their priorities?
I don't pretend to know the answer.
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I think if you took a poll of actual people rather than the handful in power, it would show that the vast majority agreed with you.
 
Sasha said:
I think if you took a poll of actual people rather than the handful in power, it would show that the vast majority agreed with you.
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In a sense I agree but in a sense I think that is wishful thinking. The politics of western democracies has recently been bedevilled by the fact that nearly half of the population seem to vote for things that are not only bad but not in those voters' interests. Artefacts of electoral systems have made it look like more than half. We should probably not drift into general politics but there are an awful lot of people around who think that 'the NHS is hugely wasteful' or 'far too many drugs are prescribed' or... I will leave it there.
 
Jonathan Edwards said:
In a sense I agree but in a sense I think that is wishful thinking. The politics of western democracies has recently been bedevilled by the fact that nearly half of the population seem to vote for things that are not only bad but not in those voters' interests. Artefacts of electoral systems have made it look like more than half. We should probably not drift into general politics but there are an awful lot of people around who think that 'the NHS is hugely wasteful' or 'far too many drugs are prescribed' or... I will leave it there.
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Perhaps we should be going more evidence-based in this discussion! This 2017 survey by the King's Fund is cheering, for instance. I'm not familiar enough with the area to know which would be the best data sources on public opinion but that seems not a bad start.

I think it's important to know whether there's a winnable battle there because if so, it's people exactly like you (retired, experienced senior medics who can speak freely) who will win it.
 
Sasha said:
Perhaps we should be going more evidence-based in this discussion! This 2017 survey by the King's Fund is cheering, for instance.
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It would be cheering if one could be sure it meant what it seemed to. Just as patients will tell therapists that their treatment is wonderful, even if they are a bit worse people can be relied on to say the NHS is great. And of course it is. (Or it was before it completely collapsed about two weeks ago.) But they then go back to shopping and walking the dog. If your roof is leaking you don't say 'oh, yes, roofs are a great idea' and forget the water ruining the carpet.

I just think if people value something it is up to them to show it really matters by getting off their backsides a bit more than filling in a nice questionnaire. especially when what they say they value is now unrecognisable and failing on almost all the major criteria.

But I am not sure I can do much. I did what I could - I handed in my resignation after my medical director failed to even bother to answer may concerns about provision of services. I don't think it achieved anything for others. It allowed me to take up new interests like ME and philosophy. Doctors as advocates are the most impotent of all in this. If they blow the whistle they are pariahs. Change has to come from the customers, but I am always happy to advise.
 
Jonathan Edwards said:
Another angle: I was really querying whether Monbiot was taking an easy way out dissing scientists and medics.
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I’ve not managed to read all the comments since my last post yet, so apologies if I’m misunderstanding the point, but I think it’s important to remember the last paragraph and sentence of George’s article (my bold):

“We need massive research programmes into both long Covid and ME/CFS, coupled with better information for doctors. But above all, we need something that currently seems a long way off. A government that gives a damn.”
 
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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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Barry said:
Absolutely. Suited them to scratch each others' backs.
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There was a nasty confluence of, um, interests between academic psychiatrists out to make a name and empire, a public health system being endlessly defunded and desperate to find savings, a private insurance industry trying to maintain their endless profits & growth, a science journal system increasingly distorted by profit motive, rabid government and social security hating ideologues around every corner, a media and a voting population either unable or unwilling to face up to this stuff, etc.

Without any one of those groups, this stuff can't happen. They all have a critical role. Plenty of blame to go around.
 
DigitalDrifter said:
I don't think it's intuitive at all. Prescribing exercise for the illness that causes patients to be harmed by exercise, seems counter-intuitive. Sounds like disbelief.
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Unfortunately it is unintuitive for those who do not understand ME/CFS. The reality that pwME really can be harmed by exercise still escapes most people, including most medical professionals. That pwME's physiology is broken somehow and responds abnormally to exercise, even though the mechanism for that is as yet unknown. But I think the iron grip the BPS shamans and their enablers have had is now weakening, and hopefully a good new NICE guideline will significantly assist with that. Hopefully there will be a snowball effect, and some of the less bold but nonetheless influential journalists will start to report more of the truth.
 
I don't remember the MRC ever being much use to us, at least I was never excited by anything they came up with, I would remember that. At one point money was available for research but it was used for BPS stuff and things like fatigue in liver disease, nothing that we wanted.

Everything was done using fukuda or oxford except by the likes of Vance Spence who published as fukuda but knew what they were looking for in patients.

The studies that found nothing wrong with muscles were obviously looking in the wrong place as recent work has shown anomalies highlighting the fact that asserting there is nothing there just because you haven't found it is the height of arrogance especially if you use it to make up a completely spurious ide of patients having a fear of exercise that led to the massive mistreatment of patients.

This was the era where it was acceptable to have a poll of doctors to see whether they agreed that ME was a "non disease" where were any medical voices raised against that abomination.

That was my life and that of my friends they trashed so I am entitled to be angry and question their professionalism.
 
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