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

You cannot blame the MRC for that. The MRC is not designed to 'come up with' anything. It is a source of funds and a mechanism for deciding what to fund. I am not convinced that much that was worth funding ever got turned down to be honest.

I am not aware of recent work showing any anomalies that look reliable. The muscle unit at UCL had much better methodology than anything I have seen recently. The person I think most involved was David Jones who is the least arrogant person you are ever likely to get - very self-effacing.

 

Are we completely sure of that. I seem to recall that there was a group, which included Mowbray and, I think, Tyrell and Kerr, who claimed that they could not get funding because all the money went on PACE. However, I have forgotten the details.

There was also the story @Graham told about funding applications receiving approval from two assessors, and very low marks from the third - presumed to represent psychiatry interests.

Perhaps we just do not know enough about the details.

EDited for gibberish

 

I have heard of many submitted projects and to be honest I would not have recommended funding the great majority. I don't think money going to PACE would have stopped more money going to other projects. Most of the virus stuff I have seen looked pretty poor quality.

But my main point was that the MRC does not 'come up with' projects as a rule. The recent CMRC structure has been a curious hybrid but still strictly speaking separate from MRC and submitting an application to MRC.

 

As I understand it, there are two separate issues: 1) the general problems with the NHS, and other national health systems for which governments are responsible, and 2) the specific problem of the system’s failure of people with ME/CFS, responsibly for which lies with governments, institutions, organisations and individuals, much as @Sean said above.

I’m not sure I agree. Rightly or wrongly, Shell and Esso’s job is to maximise profits for their shareholders. It is the responsibility of governments, consumers and society to ensure that they are incentivised to protect the environment. The job of doctors is to improve people’s health – whatever system they are working in. If the system they are working in is failing those whose health they are responsible for improving, then they have a moral and professional responsibility to try to change the system. That means speaking out, as so many doctors are now doing when they themselves are experiencing ME/CFS-like symptoms following acute covid-19.

Sorry if I’ve missed where you explained this, but who or what are you suggesting is to blame for the lack of progress that has been made in understanding ME and helping patients for the past 30 years? What do you think should have been done that wasn’t?

I accept that there has been a lack of high quality research proposals but who is responsible for that? If nobody is responsible, that is a failure of the system. Who is responsible for that? Those within the system or those to whom it is accountable (ie government) or both?

This overlaps to some extent with some of the questions I asked you on your Winter Reflection thread, which I’d be very interested to hear your thoughts on:

Sorry, too many questions, but I hope you can answer them, as I think it helps us to understand where we need to focus our attention to effect the necessary changes.

 

I am a committed socialist and I grew up in a world where what you say seemed to be true. But since the 1980s I don't think this has been a reality anywhere much.

The doctor's job is to improve the health of their customers. The oil company's job is to provide fuel to support well-being in other ways. I remember well an American College of Rheumatology meeting where the opening speaker congratulated New Orleans on their relations with BUSINESS. In other words for US physicians, medicine is business and always has been. They may not have shareholders but they need to earn a living. Academics in the US have to find their own salaries through thinking up sexy grant proposals.

The ethos in the UK was different in the 1950-1980 period but since then has been fairly close to the US. GPs are paid to not refer people to specialists. Specialists are paid to fill the slots chosen by their independent commercial hospital trust. Job descriptions are about doing that, not helping people.

Doctors like me have tried to change the system by saying that things are being done wrong. But management was imposed from outside by government and management was only interested in a commercial approach. I am not sure what is so different from Esso. Surely Esso employees should also try to change a system that pollutes the seas and causes global warming. OK doctors used to have a Hippocratic oath but surely altruistic responsibilities apply to everyone?

During the Covid business colleagues have repeatedly said that they are banned from speaking out by the management. So what are they supposed to do? Some seniors in protected positions blow the whistle but nobody seems to take much notice. Independent SAGE pointed out what needed to be done but the same incompetent team are in place and we are doing as badly as anyone.

As I have said many times, the problem with understanding the illness is mostly that it is too difficult to know where to start. People have looked at obvious things like muscle physiology and common genes and found nothing.

As for helping people with ME in terms of providing a supportive service, that I think is a reflection of the general penny pinching that has brought almost all medical services close to a halt. There are lots of things to say but I think as much as anything the central problem is the anachronistic primary care system that encourages buck passing on the cheap. Primary care should be abolished. People should be seen by experts at day one. It would be cheaper but the 'internal market' has prevented anyone from seeing the way forward. The change is occurring spontaneously in many areas, where people who used to be GPs now work in hospitals as first port of call not just for emergencies but for everything. Buck-passing becomes nonsense when it is passing to yourself.

 

This reminds me - not sure why - of when I was in hospital with ME, and the high-and-mighty senior doctor ignored/pooh-poohed the apparently junior doctor with him who started to take an interest in what I was saying re my illness and to ask me more questions. I often wonder what happened to the junior doctor. He was well-and-truly shut up on this occasion.

 

By experts you mean specialists, right? How would patients know which specialists they should go to?

 

They can ask the receptionist in the front hall. If they are pregnant they can see an obstetrician. If they have a swollen joint, a rheumatologist. If they have ME they should at least be offered an interview with someone reasonably familiar with the problem or who can swiftly pass them on to someone who is. Anything is better than being seen by someone who is supposed to know a little bit about every sort of problem and nothing much about any of them.

 

'....the anachronistic primary care system that encourages buck passing on the cheap....' mmm!What you say above sounds spot on Jonathan.

.....People should be seen by experts at day one. It would be cheaper but the 'internal market' has prevented anyone from seeing the way forward...." Agreed!


I have just finished "Runaway Medicine' by Carolyn Barber MD who says pretty much the same as you.

A reviewer says,

Eye opening book about critical medical issues.

This is an eye opening book about what is good medical practice. It covers the issue of over doctoring and prescribing and the forces that keeps it happening. Dr Barber uses both her personal experiences as a doctor and patient together with interesting references to published medical research to hit her points home. Highly recommended as everyone should know about how the system may not always be geared towards your best health interest.'

 

In some disciplines there are very few of them around.

A recent (last year) jaw-dropping example I got from an ENT consultant I saw in my local NHS hospital - I was seeing him about chronic Eustachian Tube Dysfunction that has been going on, intermittently but frequently, for well over a decade. He looked in my ears and pretended that he could see my eustachian tubes. He then told me "Your brain knows you are quite deaf and therefore it thinks your ears are blocked."

 

Sometimes I have the impression that the higher one's qualification, the more bullsh*t comes out of one's mouth (with a few exceptions, including @Jonathan Edwards). When in hospital I often found the nurses talked more sense than the doctors, again with exceptions. I had one nurse come and sit with me and share the same kind of conclusion.

 

Seeing a lot of that dynamic with LC clinics and physicians vs. physios. Lots and lots of bad comments about rude doctors. Lots of appreciation for physios, even though they can't do much more than say most of the stuff they found on social media. Basic decency is seriously missing out of medicine, it's entirely optional. The system trains emotionless robots, except without the efficiency of what an actual robot would do. Many do better than this but those who strictly follow the training... yiiish. Purely technically skills with no humanity aren't much more helpful in medicine than in any other profession.

 

But, under a capitalist system, it isn’t. If Shell or Esso were able to make more money by doing something other than selling oil they would have a legal responsibility to their shareholders to do that. Eventually all oil companies will stop selling oil. Some will go bust and others will diversify. That is quite different to a state owned national health service whose purpose and responsibly is, and always should be, to improve the nation’s health.

Although I know far less about it than you, I mostly agree with you about the problems with health services in the UK and elsewhere. But I’m not at all convinced that things would have been much different for people with ME/CFS under the type of system we had from 1950-80. As you observed, Norway spends a lot more on health per capital than the UK but ME patients don’t seem to have fared any better over there.

I agree that it is difficult, and that its difficulty has inhibited progress, but I don’t think is too difficult to have solved or at least to have made a lot more progress than we have by now. [edited to change “I think” to “I don’t think”]

As I’ve said before, I think a big part of the problem is that not enough of the right people (like you) have been applying their minds to trying to solve it. They seem to be either unaware, uninterested, or have been deterred for other reasons – including perhaps fear that they could waste their career finding nothing.

I’ve probably used this example before but I think it’s instructive to look at how and why some of the hardest mathematical problems have been solved. In 1900 David Hilbert published 23 of what he considered to be the most important problems in mathematics, and arranged an international conference which attracted the best mathematical minds in the world to focus their attention on those problems. Most of the problems were eventually solved – many by people whose interest in those problems was stimulated by Hilbert.

Similarly, when the space shuttle Challenger crashed, understanding what caused it was a very hard problem to solve. But the US government didn’t just sit on its hands waiting for people to come up with ideas. It formed the Rogers Commission and appointed some of best scientific minds in the country, including Richard Feynman who has no experience of aviation accidents, to sit on it and come up with ideas.

After 30 years – and nearly 30 years of hell for me personally – it’s not enough for governments and research funding agencies to shrug their shoulders and say “sorry [not that they’ve ever apologised] we’ve just not had enough high-quality research proposals”. When it was apparent that that was the problem, they should have been proactive in trying to stimulate the interest of the smartest people in science and medicine. That might not be their job, but I’m saying it should be, or if not their’s then some other body’s.

As you know, I think part of the strategy should have been (and should still be) ring-fencing funds, which carry over to the next year if not enough high-quality proposals are received. I also think there should have been an orchestrated campaign to encourage the right sort of people to enter the field – making it clear that this is a serious medical problem that needs to be solved and that there was plenty of money available for high-quality proposals. (The exact opposite of what SW and SMC did.) And maybe there should have been something like the Rogers commission too. I know the MRC was involved in setting up the CMRC but that seemed to be worse than useless for years, largely because the wrong people were involved. And as far as I recall it was mostly because of his friendship with Simon McGrath that Chris Ponting became involved – not because anyone at the MRC or the CMRC scouted him, as they should have.

Perhaps more of the right sort of people might have applied their minds to trying to solve ME if services had been better (along the lines you suggested to NICE in your testimony). I’ve always thought that good services follow on from good research but maybe the reverse is true too, as good services would increase understanding of the issues and potentially encourage more of the right sort of people to focus their attention on them. Maybe that will start to happen following the new guideline.

In the meantime, I can’t accept that governments and funding bodies should just wait passively for random scientists to come up with high-quality research proposals, when that type of laissez faire approach has failed for so long.

 

I see all your points @Robert 1973

I think this is crucial. Research has to be based on a deep clinical familiarity with the problem to be studied. It is likely to be almost a complete waste of time for people to dream up projects in a lab without at least one of the team having seen a hundred patients with the problem personally.



The only other thing I would add is that although we still think we have a publicly owned health care system we probably don't. I think GPs are still self-employed or employed by practices. Practices and hospitals may be non-profit organisations but they are not government owned very often. I suspect a lot of hospitals are effectively owned by the shareholders of the private partners who built them - at least as collateral.

 

Don't we already have enough people specialising in MUS? Admittedly they have no interest in finding explanations.

 

Adrian is making the reasonable point that it might be useful to have specialists who were good at identifying conditions with a range of symptoms that might fall under a variety of specialisms. examples might be Haemochromatosis and Wilson's disease - both abnormalities of metal metabolism that can produce symptoms of all sorts.

How you deal with triage is something that could benefit from a lot of study but I suspect the ideal situation is to have most clinicians doing both some general or semi-general triage work and some specialised work. That has always been the pattern to a degree but it could be done better.

 

...now, is that a double bluff. or not?

 

In my case specialists did order all the tests that might actually have shown something. The first suggestion it might be ME/CFS came from an endocrinologist who also ordered an MRI to exclude other things. Before that the GP only ordered repeated complete blood counts and gave unwanted reassurance (because by then I had no doubt there was a serious problem and just wanted to know what it was rather being reassured it was nothing).

 

I am not convinced there was not enough good quality proposals put to the MRC. Derek Pheby asks for money to ask people with ME what symptoms they experienced which would have given us data as a start.

Also, the research they funded was of poor quality. They awarded a fortune to the PACE trial which was based on a theory of deconditioning yet there had never been any research to see if deconditioning occurred in ME. Money for a treatment for a symptom that had never been shown to exist in a significant number of patients. Would a study into the treatment of itchy ears in rheumatoid arthritis be classed as good quality?

Studies based on questionnaires were prioritised.

I think that it was very easy to claim that no good proposals were put forward but that was very easy to say. Thousands of patients were becoming ill with a lifelong highly disabling disease yet more effort was put into stigmatising the illness than looking for treatments.

If it was all perfectly reasonable, that is no one was deliberately sabotaging a biomedical view rather than psychological there would have been plenty of available ways to support people with ME. Automatic review by an OT to see what aids would help for instance yet this was withheld in case it made us think the were really ill.

Anything that suggested the BPSers were wrong was squashed

Both here and in the US lots of interesting small scale studies found things but were never funded for large scale trials.

Only fatigue was considered important so we would be swamped in any trials bey people with other diseases.

A lot of effort was put into making it seem we were treated properly and it was bothersome and delusional patients who were complaining. I can see why doctors were taken in but it is actually a rewriting of history.

There has always been a tendency in science to go beyond the evidence. Just because a trial is negative does not mean there is nothing to find or that nothing would be found if things were tweaked a bit.

Research has shown that ME muscle cell respiration is abnormal in vitro. This means that any experiments done on muscles in vivo did not show it up. The experiments were no doubt done in good faith, but there is something wrong in ME muscles they did not prove there was nothing wrong and certainly not that it was psychological which is how it was used.

Quite frankly the extreme pain I get in my muscles is in itself proof that something is far wrong with our muscles. Myalgia in the name means it is not uncommon and I got it when I was very active too.