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

[Lou B Lou]

A prominent 1996 ITV evening News piece announcing the name Chronic Fatigue Syndrome and 'psychological factors'.




The Royal Medical Colleges Report of 1996. Prelude to the roll out of CBT/GET. CBT/GET was in the NHS in pockets well before the full rollout of the clinics in the mid 2,000s. I was prescribed CBT/GET by a neurologist at a CFS clinic in 1997 after diagnosis.

“After this report, doctors do believe that slowly and hopefully surely they're beginning better to understand the complex causes of the illness and even how better to treat it”​

The message:

'Chronic Fatigue Syndrome'

'Fatigue'– see the word FATIGUE in big letters up on the screen behind the newsreader?

“The Report concludes the approach to treatment should be a psychological one as well as medical.”

Transcript:

“What doctors used to call me ME. They said it does exist and should be more properly called chronic fatigue syndrome. There's still no adequate medical explanation for it. The experts say it could be triggered by viruses, but there's also a psychological factor“​

Film/short interview with Ondine Upton (of AFME) …..

Newsreader:

“The Report recognizes for the first time that the illness does exist and concludes the approach to treatment should be a psychological one as well as medical. Many patients have their illnesses triggered by a virus. But in terms of long-term disability, are psychological factors important?”​

Wessely:
“Well, of course they are. I mean, uh, in most illnesses they are, and they are particularly important in this area. It would be an odd world if they weren't. They need to be addressed with equal seriousness to physical factors.”​

Newsreader:
“So, farewell then, ME. And hello, the Chronic Fatigue Syndrome, the new preferred name for this illness, which continues to baffle the medical profession. Although after this report, doctors do believe that slowly and hopefully surely they're beginning better to understand the complex causes of the illness and even how better to treat it. But the report offers little immediate hope for sufferers like Ondine Upton. For them and her, the future remains uncertain.”​

(My underlining)

 

[Jonathan Edwards]

GPS, nurses, consultants in hospitals, ‘specialist’ services, pretty much everyone patients interact with in the NHS.

Yes, the staff that people with ME/CFS have got dumped on and the staff being geared up to continue with the Delivery Plan via HERITAGE and 'helpful' charities. These are not the people who will turn around research funding or turn around services.

 

[rvallee]

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?

Oh it's better, it just has zero meaningful impact one way or another. It's not the reason we can't break through with anything, it's not even a reason. People bring up all sorts of biobabble about all sorts of things regarding their health, it also makes no meaningful difference to how they are treated by their physicians.

This just sets us up for disappointment. The idea that if only we could get everyone to speak wisely and accurate all the time then every blocked door would open up for us. None of that actually matters, there isn't a single actual decision being made anywhere, in a clinic or in a department conference room, where some of our advocates, or individual patients in a consult room, not saying the perfect things makes any difference at all. All those decisions are made upstream without any regard for fact and long before we open our mouths.

The situation we are in is a classic oppressor dynamic. We have zero influence on anything, our opponents have it all. There is no partial piercing of that bubble, it only ever bursts in a single shot, with no in-between progress. This doesn't mean that it won't matter or that we shouldn't try to do our best. Most of us are, but there should be no expectation that if we could get everyone to fall in line with "the S4ME way" anything good would happen out of it until the scandal blows wide open. Then it will definitely matter, retrospectively, but until then we are doing everything we can as best as we can while our opponents are just derping it out farting in general directions and winning every battle, simply because they have the full balance of power.

In his loving memory, to quote captain Picard: It is possible to commit no mistakes and still lose. That is not a weakness. That is life.

 

[Sasha]

I would have thought what I write here made things plain enough. I don't see any article being more widely distributed. If organisations were happy to distribute it we wouldn't be having this discussion.

But what you write here isn't succinct and drawn together into a single article. It's bits and pieces here and there, and if all it is is a few forum posts, it's not presented as something that should carry weight.

It's just like writing for Queios - your Quieos pieces probably contain mostly things you've said here, scattered about the forum, but it's bringing them together as a single thing to read that makes the concepts accessible and impactful.

Everyone in medicine knows that we have special words for conning patients into thinking we take them seriously when we don't - functional, for one. If the public are not aware then I am not sure trying to reach out with an article out medical bad faith is a good way to go.

If PwME are not aware then they need to know, so that they know they're not being taken seriously and can take whatever action possible to protect themselves, via individual or collective action. Ignorance is not bliss here.

But even simply an explanation of how doctors interpret what PwME say - as opposed to explaining how to interpret what doctors say - could be a huge step forward, especially if the charities back it. Otherwise, patients are constantly shooting themselves and their fellow PwME in the foot.

 

[MrMagoo]

The thing is I and others have had a different experience to you. Never brought up ME or neuroimmune or anything and yet get the same reaction. Tried exactly the approach you propose as a solution, given only sound information like our fact sheets (including the one written by Jonathan). We have tried to have a frank discussion and yet still get treated as if this is in our heads and not worthy of support. Despite being seriously ill. And things have gone backwards in places. I’m even denied a flu jab now (which I had managed to get for a few years) because of how little my current GP thinks of ‘CFS’.

This is why I don’t think it’s about what we say to doctors, it’s their preconceptions and misunderstanding that are the problem. I agree it’s dangerous and exhausting. But sadly what we say does not matter, we can’t fix this by using the right magic words. I really wish we could. Maybe writing something more will help there be a few less patients spreading things that aren’t based in science, maybe it will reduce the noise at the periphery. But the healthcare professionals and the system they work within are where the problem lies and the misinformation is worst and it is that which most urgently needs addressing.

I get mine at the chemist, I appreciate that isn’t a solution if you can’t go to the chemist though.

 

[Jonathan Edwards]

The Royal Medical Colleges Report of 1996.

Yes, that seems to be the point where the CFS concept move on to a CBT target. Wessely was still working on MHC genetics at that point but the shift had occurred.

The Report recognizes for the first time that the illness does exist

This is interesting in that it confirms that the medical profession had developed a consensus that ME as proposed by Acheson was a non disease.

And surely this final piece from Trevor Phillips(?) is pretty reasonable?:

“So, farewell then, ME. And hello, the Chronic Fatigue Syndrome, the new preferred name for this illness, which continues to baffle the medical profession. Although after this report, doctors do believe that slowly and hopefully surely they're beginning better to understand the complex causes of the illness and even how better to treat it. But the report offers little immediate hope for sufferers like Ondine Upton. For them and her, the future remains uncertain.”

Except that this shift had occurred nearly ten years earlier with the recognition that epidemics of ME/CFS type illness were not likely to be due to some special"ME" mystery virus and that 'post-viral fatigue' was not an adequate description because there wasn't always a link to a viral illness.

 

[Jonathan Edwards]

But what you write here isn't succinct and drawn together into a single article. It's bits and pieces here and there, and if all it is is a few forum posts, it's not presented as something that should carry weight.

OK so it's already in the Qeios pieces.

I never write things to carry weight. I write what I think makes sense. Whether that carries weight is up to the reader to decide.

 

[obeat]

But even simply an explanation of how doctors interpret what PwME say - as opposed to explaining how to interpret what doctors say - could be a huge step forward, especially if the charities back i

The charities won't back it! Patients try the NHS, then they try the private practitioners, then they try the 101 quack cures online.

MEA should be putting out review articles like ME/ CFS Science writes.

We couldn't even get DwME to collaborate with S4ME.

 

[Jonathan Edwards]

If PwME are not aware then they need to know, so that they know they're not being taken seriously and can take whatever action possible to protect themselves, via individual or collective action.

Surely this is the job of the advocacy groups, not me. Some of them are paid a salary to write stuff about this. The advocacy groups won't touch it because it is 'too negative'. And that is the problem this whole discussion is about.

 

[hotblack]

I get mine at the chemist, I appreciate that isn’t a solution if you can’t go to the chemist though.

Yes, that’s the problem, can’t get around the house let alone out of the or to the chemist. Thanks though

It was also what my GP said. If you are the GP responsible for someone who has severe ME/CFS and your response to them seeking support is ‘go to the chemist, do you want a referral to a psychologist, no it’s fine we know all about people with CFS we have lots of them’. Well, you get the idea I’m sure…

 

[NelliePledge]

I have the same expereince as @Lou B Lou, I get the sense the term is used by GPs relatively interchangeably - chronic fatigue is a contraction

Yep or even just fatigue

 

[MrMagoo]

Yes, that’s the problem, can’t get around the house let alone out of the or to the chemist. Thanks though

It was also what my GP said. If you are the GP responsible for someone who has severe ME/CFS and your response to them seeking support is ‘go to the chemist, do you want a referral to a psychologist, no it’s fine we know all about people with CFS we have lots of them’. Well, you get the idea I’m sure…

Yeah I’d get a different GP

 

[rvallee]

The people in the research community who think there is neuroinflammation are hampering things I would agree by making baseless claims not on any real evidence - but they are referring to the same ME/CFS as we are in so far as it is a syndrome defined by CCC/IoM criteria.

Bit tangential but there is a popular meme in the last few years about depression being caused by brain inflammation. Mainly because the chemical imbalance meme was exposed as a lie, and because of the need to maintain a pretense of taking it seriously with some trendy biobabble, even though most physicians clearly think of it as a vaguely psychosocial issue, and it's not causing any problem.

Depression, despite being far more vague than ME/CFS, is not respected any less for it, in fact most pwME are incorrectly coded with it even if we don't fit the vague criteria for it. It's frankly far more likely that by this definition depression is not actually one single thing, closer for it to idiopathic chronic fatigue than ME/CFS, with its defining PEM. It's most likely to be many things, each with their own root cause, they simply happen to look alike without the right tools.

So all the BS about language, definition and criteria are just a false diversion, excuses people make to explain their own behavior, to try to rationalize what are fundamentally irrational judgments. This is very common in all human affairs. Without science, humans are winging all of it, every single time, and most of the time we don't have good reasons for why we don't things, we just rationalize them after the fact, more often than not with the idea that the idea is good because we are good and thoughtful and so on. Just like everyone is an above-average driver.

There seems to be this idea from @Jonathan Edwards that those physicians' opinions are grounded in deep analysis but everything I have seen out of various research and discussion of everything medical that isn't rooted firmly in biology, which by definition is what makes up most of mental health, screams that there is no such deep analysis, none at all. Frankly it's mostly derpy nonsense. Every claim is just rationalization, and all of them will pop like the bubble itself when we are on the other side of the looking glass. Almost everyone will admit to that once it's no longer fashionable to pretend that the emperor's clothes are whatever color is trendy to pretend they are this season.

 

[Lou B Lou]

Yes, that seems to be the point where the CFS concept move on to a CBT target. Wessely was still working on MHC genetics at that point but the shift had occurred.

The Report recognizes for the first time that the illness does exist

This is interesting in that it confirms that the medical profession had developed a consensus that ME as proposed by Acheson was a non disease.

And surely this final piece from Trevor Phillips(?) is pretty reasonable?:

“So, farewell then, ME. And hello, the Chronic Fatigue Syndrome, the new preferred name for this illness, which continues to baffle the medical profession. Although after this report, doctors do believe that slowly and hopefully surely they're beginning better to understand the complex causes of the illness and even how better to treat it. But the report offers little immediate hope for sufferers like Ondine Upton. For them and her, the future remains uncertain.”

Except that this shift had occurred nearly ten years earlier with the recognition that epidemics of ME/CFS type illness were not likely to be due to some special"ME" mystery virus and that 'post-viral fatigue' was not an adequate description because there wasn't always a link to a viral illness.

Jonathan Edwards: 'And surely this final piece from Trevor Phillips(?) is pretty reasonable?':

“So, farewell then, ME. And hello, the Chronic Fatigue Syndrome, the new preferred name for this illness, which continues to baffle the medical profession. Although after this report, doctors do believe that slowly and hopefully surely they're beginning better to understand the complex causes of the illness and even how better to treat it..."

The "how better to treat it" was CBT/GET. The entire newspiece was spin and positioned Wessely as 'the expert' on national news.

 

[hotblack]

Surely this is the job of the advocacy groups, not me. Some of them are paid a salary to write stuff about this. The advocacy groups won't touch it because it is 'too negative'. And that is the problem this whole discussion is about.

Exactly! That and how do we stop it? I assumed part of the solution is getting so many people to join CAB (see post below) that the advocacy groups have a smaller audience or support base to draw from? Do you think we can do it without that? It would be good to hear what approach you think would work or be most efficient/effective. You have more conversations either them than most of us

Post in thread 'How research directions and patient experiences connect to the terms ME, CFS and future names'

Saturday at 10:10 AM

On a purely practical basis we are not going to get patients to let go of some of the unscientific ideas if we don’t offer an alternative here and now for the problems people face.

To those who here and in other threads have pushed back let me try to explain why I think this is important. This forum is a great home of the value of the science, the community believes in it and shares the goals of stopping misinformation. And yet even here the ‘campaign against biobabble’ (or CAB as I’ll call it) and the arguments made by some have not been wholeheartedly embraced. Why is that?

We’ve...

• hotblack

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[Sasha]

OK so it's already in the Qeios pieces.

I don't think that what you've just said about how doctors interpret what patients say to them, and the effect that has on patients individually and collectively, and how you see the penny drop with doctors when you yourself have put things another way, is in your Quieos pieces.

And if it's scattered across them in what are essentially academic articles, they're in effect not accessible to brainfogged patients, most of whom won't be used to reading things presented in that high-level way.

I never write things to carry weight. I write what I think makes sense. Whether that carries weight is up to the reader to decide.

But what you're saying is important, and PwME need to hear it. The way for it to carry weight - and it should, if it's true and important - is to get it out there in a short, clear, accessible format, not as bits scattered across the forum or across Queios articles. Putting all that stuff together is beyond the vast majority of patients.

What you said in your post that I quoted was surprising to me, hopeful and powerful. I can see it being impactful.

Patients have no way of knowing what doctors really think, because doctors won't tell us. The only person who can tell us what doctors think is another doctor, who is having honest conversations with them.

 

[Sasha]

The charities won't back it! Patients try the NHS, then they try the private practitioners, then they try the 101 quack cures online.

MEA should be putting out review articles like ME/ CFS Science writes.

We couldn't even get DwME to collaborate with S4ME.

The charities might not back it yet but the more PwME start to take and talk about the accurate view of things, the harder it will be for charities to avoid joining it. Like influencing government, it's a process that begins at the grassroots.

 

[Jonathan Edwards]

The "how better to treat it" was CBT/GET. The entire newspiece was spin and positioned Wessely as 'the expert' on national news.

Yes, but the final paragraph was fair enough. We need to disentangle different issues and not tar everything with one brush.

 

[Sasha]

Surely this is the job of the advocacy groups, not me. Some of them are paid a salary to write stuff about this. The advocacy groups won't touch it because it is 'too negative'. And that is the problem this whole discussion is about.

Is that really why the advocacy groups aren't saying it? (Genuine question - I don't know what they think, either!)

And if it is, can we directly address with them why that 'too negative' fear is not helping things?

And if we can't get the advocacy groups to take that approach, we're just left with ourselves.

I also think that as advocacy groups, they don't have that 'inside track' that you do as a doctor.

(I don't mean to pile the responsibility for writing something on you - it was just a suggestion - but I'm trying to think of how we can tackle this problem, which seems an important one where you have insights that I'm not seeing anywhere else.)

 

[Jonathan Edwards]

It would be good to hear what approach you think would work or be most efficient/effective.

Just keep talking to anyone who wants to talk, in the knowledge that others who need to hear are probably dropping in fairly often.