How research directions and patient experiences connect to the terms ME, CFS and future names

[Jonathan Edwards]

Moderation note: This thread was created by splitting off a discussion concerning a Times article about the sprinter Beth Dobbin. A number of posts below therefore refer to Beth and the article.
The Times article was shared here in the original thread: UK: Beth Dobbin -- BBC: The Olympic sprinter now bedbound for 22 hours a day


Thanks both.

Much of the article is very good and the emphasis on needing £15M for Sequence ME especially good.

The problem for me is that this is the same story we have heard for so long about "ME", the imaginary 'complex neuroimmune disease that affects multiple body systems'. Fifteen years ago I would have said "Ah, yes, OK, I don't think we have evidence that ever existed". Today I would say...

the same thing. The difference is that I have learnt that there is a real disease called ME/CFS or maybe even just CFS. Today I have been trawling through historical papers on CFS that are very much papers on ME/CFS and that I should have known about years back. They provide convincing data for neurophysiological changes that look very relevant to symptoms. The obsession with "ME" has obfuscated the research field for too long.

The crucial next step is to get interest from the medical scientific community - who rightly hold the research purse strings. Stories about ME will simply be ignored. The advocacy community is shooting itself in the foot. There will only ever be any interest when the ME folklore is abandoned. And that includes antihistamines and so on.

 

[V.R.T.]

The obsession with "ME" has obfuscated the research field for too long.

You could make a very strong case that the same is true about 'CFS'.

 

[V.R.T.]

There will only ever be any interest when the ME folklore is abandoned. And that includes antihistamines and so on.

Then there will never be any interest because patients won't give that stuff up without real treatments to replace that with.

The fault is not with patients who repeat the things doctors and researchers tell them. The medical science community should have opened those purse strings forty years ago. They didn't do and havent done it because of a false narrative about us that was politically convenient and used and disseminated cannily by people like Wessely. Not because some people take antihistamines.

Advocacy is a different matter but your statement paints and incredibly bleak picture if it is true. There is no way to stop people believing in this stuff en masse without the real science to replace it with. Plus Dobbin only says they have helped her sleep in this article (I know inflammation is a bugbear of yours). As we discussed before, even some people on this forum who are very skeptical about things like MCAS take antihistamines.

Surely the medical scientists will see the medical science that has been emerging and get involved because of that? Rather than what some patients believe or don't believe.

 

[Jonathan Edwards]

You could make a very strong case that the same is true about 'CFS'.

Not so much. The problem comes when Wessely and Sharpe and co degrade that to chronic fatigue. The research on CFS in psychiatry units in the 1990s is excellent - some of the best we have. There was no such excellent research in to 'ME'.

 

[Jonathan Edwards]

Then there will never be any interest because patients won't give that stuff up without real treatments to replace that with.

Well they won't if the media are fed this sort of story the whole time.

 

[Jonathan Edwards]

The medical science community should have opened those purse strings forty years ago. They didn't do and havent done it because of a false narrative about us that was politically convenient and used and disseminated cannily by people like Wessely. Not because some people take antihistamines.

I am beginning to see that this narrative is not quite right. People like Ted Dinan were doing very good research into CFS aka ME/CFS in the 1990s in psychiatry units. They had funds. Dinan continued in Ireland until around 2010. He has only just retired. Richard Edwards worked on the muscle side of CFS aka ME/CFS in the 1980s and 1990s and found nothing, despite having a large unit at UC funded by MRC. Ten years ago I racked my brains to think what research on the biomedical side would actually be worth doing and I couldn't think of anything. It was only when the GWAS was proposed that I saw that was something that should have been done earlier.

 

[Jonathan Edwards]

Advocacy is a different matter but your statement paints and incredibly bleak picture if it is true. There is no way to stop people believing in this stuff en masse without the real science to replace it with.

Why not? Why can't the advocacy groups get this right and put it across to journalists and members of support charities? Is it such a big ask to take a critical approach to evidence? The science is here with us now. We have fifty threads here on good quality data and a score on proposed projects. I am afraid I have little sympathy with people who cannot stop and check they have basic things right.

Surely the medical scientists will see the medical science that has been emerging and get involved because of that? Rather than what some patients believe or don't believe.

A number of scientists are already getting involved - we have a whole slew of them discussing their projects. It is fantastic. But that is research that will feed through in three to four years time - and only if funded. The task at present is to get the academic community who give out the grants to see the change. These are not generally people who will be doing the research on ME/CFS. A number of them will be clinicians, who need to see that this is not just more fairytales about ME but real science about ME/CFS. You can turn people's views around in half an hour if you get on the right wavelength. When I realised this was an area that deserved hard science it happened on the spot. I read Fluge and Mella's paper and was engaged enough to write a comment that was published in PlosONE and gave the Norwegians a lot of reassurance.

Why can't the advocacy people talk in the language of real medicine? They read it here, regularly. For some reason they don't want to engage.

 

[Utsikt]

The crucial next step is to get interest from the medical scientific community - who rightly hold the research purse strings. Stories about ME will simply be ignored. The advocacy community is shooting itself in the foot. There will only ever be any interest when the ME folklore is abandoned. And that includes antihistamines and so on.

Antihistamines for inflammation seems weird, but antihistamines for sleep is quite common.

But I do agree that the «specialists» and the advocacy groups really should know better - that have a duty to be well informed.

The bio-myths are definitively not helping our case, but it could be argued that the medical scientific community might have ignored ME/CFS still and just found other excuses for doing so. The diagnostic delay for endometriosis is about the same as ME/CFS in Norway, for example, despite being common and often visible when you go looking for it. It has only very recently started to get more public attention despite the patients being able to refer to robust biomedical pathology for decades.

There are informal hierarchies for disease prestige that are consistent throughout the entire healthcare system. We know from the legal science field that there exists «ideal patient» roles that you should fit into in order to get benefits in the courts.

For ME/CFS specifically, there are very powerful people that are willing to let patients starve to death in order to make sure their BPS delusions dominate. The Norwegian guideline process was hijacked by the BPS people from before it was even started, and everyone from Garner to Fink have worked hard to influence it. The insurance industry have poured millions and millions into BPS research and clinicians, and into lobbying and infiltrating the governmental organisations.

All of this is well established, and you could argue that the advocacy groups are not doing their job if they don’t account for it. Their job is to influence within the context of the real (and unjust) world, not in an ideal world. So their strategy isn’t exactly optimised for achieving change.

 

[Jonathan Edwards]

For ME/CFS specifically, there are very powerful people that are willing to let patients starve to death in order to make sure their BPS delusions dominate.

I agree. But the BPS approach is very much linked to the idea that 'the thinking is wrong' - the thinking is negative and embroidered and unreal. And that is exactly what "ME, the complex neuroimmune disease that affects multiple systems" is - wrong, negative and unreal. The reality is certainly negative enough, but why embroider it with half a dozen other abbreviations that don't really exist? Why not focus on the actuality? Why ignore key physiological data just because the paper has 'CFS' in the title?

The way to undercut the BPS people is to shake off all this stuff and just focus on the real science.

 

[ScoutB]

Ten years ago I racked my brains to think what research on the biomedical side would actually be worth doing and I couldn't think of anything.

It would take more knowledge of the risks and opportunities than I have to come up with something specific, but since the 80s there have been hundreds and hundreds of biomedical neuroscience studies of diseases like Parkinson's, including PET scans and autopsy research. We have had virtually none of this for ME/CFS (until now). I'm sure tools back then were much more limited than they are today, and that many of those Parkinson's studies were not much use, but it seems reasonable that if ME/CFS had the attention other diseases did some clever neuroscientist could have come along and thought of a useful question to ask. Especially given the prolactin results were already pointing to the pituitary/hypothalamus.

Not quite biomedical research, but better epidemiological data could have been collected at any time, and would have improved our lives by giving us an idea of what to expect trajectory/outcome-wise (how likely am I to be able to ever work again after 1, 2, 3, 4 etc years of illness? If I get better can I reasonably expect to stay that way or do people very often relapse? Are people who continue trying work more likely to become more ill? etc)

 

[Utsikt]

I agree. But the BPS approach is very much linked to the idea that 'the thinking is wrong' - the thinking is negative and embroidered and unreal. And that is exactly what "ME, the complex neuroimmune disease that affects multiple systems" is - wrong, negative and unreal. The reality is certainly negative enough, but why embroider it with half a dozen other abbreviations that don't really exist? Why not focus on the actuality? Why ignore key physiological data just because the paper has 'CFS' in the title?

The way to undercut the BPS people is to shake off all this stuff and just focus on the real science.

I completely agree it’s playing right into their hand. It also creates a lot of unnecessary barriers towards recognition from the people that would be able to see through the BPS charade and could have been impactful allies.

 

[rvallee]

You could make a very strong case that the same is true about 'CFS'.

There is a simple dynamic at play here: the ME part will no longer be emphasized when the CFS part no longer is. That is, people would tone down the biobabble if the psychobabble wasn't dominant. It's a two-wrongs thing but the root cause is the obsession with psychosomatic ideology.

It's simply a reaction. It's not productive, but there is no reaction without the first action, hard to blame people over this as long as psychosomatic models continue to ruin everything.

 

[rvallee]

The way to undercut the BPS people is to shake off all this stuff and just focus on the real science.

That's the problem. We can't focus on real science while they're out there accusing us of things we keep having to defend against, things that are cheap, simple and popular. There really is no right response to this, because this will only work when the investments pay off, and the investments still aren't there.

We can't undercut this. It sounds inspiring to say it but there is simply nothing that we can do right that will make things work out for the best until the science pays off, and it can't pay off because there is nothing we can do to make that happen until it's 100% done.

Good old Catch-22 illness: screwed if we do, screwed if we don't, screwed all around.

 

[Utsikt]

That's the problem. We can't focus on real science while they're out there accusing us of things we keep having to defend against, things that are cheap, simple and popular. There really is no right response to this, because this will only work when the investments pay off, and the investments still aren't there.

I can’t understand how it isn’t better for us to say truthful and accurate things than to say untrue or meaningless things. Surely we have a higher chance of getting through to someone that can be of help if it isn’t so incredibly easy to pick apart the arguments we are using?

And why is it not better to avoid playing right into their narrative about thinking we have something we don’t?

 

[Jonathan Edwards]

it seems reasonable that if ME/CFS had the attention other diseases did some clever neuroscientist could have come along and thought of a useful question to ask. Especially given the prolactin results were already pointing to the pituitary/hypothalamus.

Even now we are presented with a central nervous system black box. Neuroscientists have only managed to work with Parkinson's because of localising pathology. There is nothing in ME/CFS unless Felipe has found it. The decent work was done by psychiatrists, who had an interest in neurotransmitters.

I remember a ground round at UC only a few years back when a cardiologist challenged a neurologist to show his speciality could do science. The neurologist accepted defeat. Even with Alzheimer's it looks as if we have been looking at the wrong thing for ten years. Maye in PD too. And in migraine it looks as if the real problem only started to emerge ten years ago.

Not quite biomedical research, but better epidemiological data could have been collected at any time, and would have improved our lives by giving us an idea of what to expect

I am not so sure. People like Leslie Finlay and Tony Pinching understood the prognosis from seeing hundreds of people in the 1990s. Putting numbers on that does not make so much difference.

There should have been more research but biomedical research is not something you can just go and do and get results. Reading a spectrophotometer does not tell you what hypotheses you should be coming up with. Very few people learn how to get new answers. Very few know how to distinguish a good theory from a bad one - even when all the evidence is laid out. Lots of people here do, but that is presumably because they are drawn to a meeting place where that sort of critique thrives. Ultimately that is down to Mark from the old days and people like Graham and Bob who are no longer here.

 

[Jonathan Edwards]

That's the problem. We can't focus on real science while they're out there accusing us of things we keep having to defend against,

I don't actually see them out there doing that in the press any more. We have Paul Garner's social media explosions but most of the others have gone silent on ME/CFS. This Times piece was an opportunity to completely ignore the BPS people and put across the reality. It will have had no traction on the people holding the money.

It sounds inspiring to say it but there is simply nothing that we can do right

I disagree. At least don't shoot yourselves in the foot.

 

[Robert 1973]

People like Leslie Finlay and Tony Pinching understood the prognosis from seeing hundreds of people in the 1990s.

If that was so – and I believe it was – Finlay didn’t have the courage to tell his patients.

I was admitted to Finlay’s inpatient unit in Essex in 1999, and I continued to see him for several years thereafter. The CBT wasn’t the awful PACE-type CBT, and the staff were mostly kind, but it wasn’t particularly helpful and it did not help me to prepare for the life of severe disability I have had since. It was much more focussed on the prospect of recovery by making the right adaptations.

I told my parents that if I didn’t get better I was going to make damn sure he knew about it, even if that meant paying to see him privately, which was my only option after he discharged me from his NHS service. I did that for a few years until one day, with no warning or consultation, I received a very short letter telling me that he was discharging me from his private practice.

Several years after that my parents attended a talk in Brighton where he was a speaker. He told the audience that the prognosis for people like me (severe for 6 years when I was admitted) was very poor, and that patients were in no way at fault for their failure to recover. I sincerely wish that he had had the courage to tell me and everybody else that when I was his patient.

He did some helpful things, but I think he was intimidated by Wessely and I think that his inpatient facility in a neurology unit was missed opportunity.

 

[dave30th]

Today I have been trawling through historical papers on CFS that are very much papers on ME/CFS and that I should have known about years back.

can you link to some of these?

 

[hotblack]

The obsession with "ME" has obfuscated the research field for too long.

Isn’t the that obsession a backlash to some other things that have happened. You may have a point but perhaps are missing a rather importsnt part of the picture and the root cause.

We didn’t start the fire.

There is a simple dynamic at play here: the ME part will no longer be emphasized when the CFS part no longer is. That is, people would tone down the biobabble if the psychobabble wasn't dominant. It's a two-wrongs thing but the root cause is the obsession with psychosomatic ideology.

It's simply a reaction. It's not productive, but there is no reaction without the first action, hard to blame people over this as long as psychosomatic models continue to ruin everything.

Absolutely this. Well put.

That's the problem. We can't focus on real science while they're out there accusing us of things we keep having to defend against, things that are cheap, simple and popular.

Yes again. There’s plenty of us that do focus on the real science but still get treated like shit and suffer. This doesn’t happen in diseases which aren’t psychologised and open to debate in such a corrosive way.

 

[hotblack]

I can’t understand how it isn’t better for us to say truthful and accurate things than to say untrue or meaningless things.

I don’t think anyone is arguing for those things, not that I’ve seen in this thread. We all want to reduce misinformation.

The point being made is the same one that has been made dozens of times here and it is pushing back against an obsession or blind spot that seems to exist. Even if we were able to completely eradicate those ‘biobabble’ views (which no disease has managed to, they all have some doctors and patients with some odd ideas) we would still be treated poorly. The root cause of this problem lies elsewhere.