What will be the threshold for calling ME/CFS a 'disease' and are we already across it?

[Sasha]

We've had some discussion before of what the criteria are for calling something a 'disease' rather than 'an illness' and I know we're all desperate to cross that threshold and be able to go around shouting, 'I told you! I've got a proper disease!'

But I have forgotten the criteria and the threshold is anyway looking a bit blurry. Will genetic associations take us over the threshold, and why haven't the ones we've already seen reported done so? What about the Zhang et al. study? @Jonathan Edwards's theory should be getting published as a Qeios preprint tomorrow, but what level and type of empirical confirmation of it (or bits of it) would be needed for us to have a 'disease'? What other front-runners could get us over the threshold? And who decides when we've crossed it?

 

[Jonathan Edwards]

It's pretty much as long as a piece of string I think. There is no generally agreed definition of a disease even if I have my own preference. I am not sure it is very good PR to focus on it too much. The Doctors will all be rolling their eyes and saying 'Ha, so now they think they have a Real Disease - say no more'. What matters is that we have evidence for the diagnosis of ME/CFS picking out some identifiable and specific biological processes.

 

[V.R.T.]

The Doctors will all be rolling their eyes and saying 'Ha, so now they think they have a Real Disease - say no more'.

At what point, or what threshold of evidence, do you suspect they will stop rolling their eyes?

 

[Jonathan Edwards]

At what point, or what threshold of evidence, do you suspect they will stop rolling their eyes?

When there are effective treatments I am pretty sure they will. Before that it is pretty hard to see in the crystal ball!!

 

[Mij]

I'm fine with referring to it as a syndrome for the time being.

 

[Sasha]

When there are effective treatments I am pretty sure they will. Before that it is pretty hard to see in the crystal ball!!

But surely if we get some solid biochemical links, that should be the threshold for any rational doctor? My fear is that we could be waiting another five or ten years for an even half-effective treatment, and being not seen as having a disease, is, as we know, not just socially damaging but physically dangerous. If we think the 'disease' transition won't happen when it should, shouldn't we be making a plan to tackle that?

 

[Jonathan Edwards]

any rational doctor

How often have you met a rational doctor?

And as I said, I think getting hung up on 'disease' terminology is likely to be counterproductive. Within medicine we don't even think about whether something is a 'disease'.

 

[BrightCandle]

But surely if we get some solid biochemical links, that should be the threshold for any rational doctor? My fear is that we could be waiting another five or ten years for an even half-effective treatment, and being not seen as having a disease, is, as we know, not just socially damaging but physically dangerous. If we think the 'disease' transition won't happen when it should, shouldn't we be making a plan to tackle that?

We aren't in control of what doctors do. They are only interested once a treatment has hit the necessary evidence for it to be available on the NHS list of standard treatments and at that point they might be willing do a clinical diagnosis and rule out other conditions to try the ME/CFS treatment. The idea that anyone, including government, has any more control than pushing on a piece of string is delusional. There is no oversight for the healthcare industry it does as it pleases. I am not even sure if an authorised treatment will be enough, this disease seems to be treated with a great deal of prejudice currently, leading to patients dying unnecessarily and without any consequences.

 

[Sasha]

How often have you met a rational doctor?

I have no way of knowing, because thus far, it mostly hasn't felt safe for me to have a frank and rational discussion about my ME/CFS, and even when I've spoken frankly, I don't know whether I'm being lied to in response.

But I'd like to believe that a large proportion of people, including doctors, are willing to change their position when good evidence comes up, particularly if it's a topic that they haven't invested themselves in and won't lose face or feel stupid about it when they find that they've been misled in the past.

We know that PwME die because of current attitudes - so when we reach an evidence threshold that shows it's not all in our heads and that a bit of exercise would fix us, we need to take action, and fast.

 

[Peter T]

I understand the emotional significance of names and labels (and of course their ‘social’ implications), but personally what I see as the first step to changing medical views is identifying the biological underpinnings and hopefully meaningful treatment (s).

 

[Utsikt]

We know that PwME die because of current attitudes - so when we reach an evidence threshold that shows it's not all in our heads and that a bit of exercise would fix us, we need to take action, and fast.

We already have that. There is nothing that indicates that it’s all in our heads, and PACE, MAGENTA, etc. showed that exercise does not work.

Imo, what we need is either a super clear biomarker, or an effective treatment. Because frankly, the people that don’t get it now won’t ever get it without one of those two advancements.

 

[Sasha]

We already have that. There is nothing that indicates that it’s all in our heads, and PACE, MAGENTA, etc. showed that exercise does not work.

I don't think that we do. There's nothing reliable that shows that it's in our bodies, and so people are defaulting to the idea that it's all in our heads. AFAIK, PACE and MAGENTA showed that GET doesn't work, not that exercise doesn't work - I don't think there was any evidence that they actually managed to get anyone moving much, so one could argue that they simply failed to persuade people to move and that the PwME would have done great if they'd only exercised.

Imo, what we need is either a super clear biomarker, or an effective treatment. Because frankly, the people that don’t get it now won’t ever get it without one of those two advancements.

I think there's probably a massive middle ground of people not invested in the BPS idea who would quite happily switch away from it if the wind blew the other way. I don't want us to have to wait for a biomarker or an effective therapy. We know that lives are at stake.

 

[Utsikt]

I don't think that we do. There's nothing reliable that shows that it's in our bodies, and so people are defaulting to the idea that it's all in our heads.

There is also nothing reliable that shows it’s all in our heads. Or just a bit in our head. Nothing. Yet as you say, people are willing to believe that’s that case without any evidence.

So we need evidence the opposite way, and that’s only going to come from a biomarker or a treatment.

I think there's probably a massive middle ground of people not invested in the BPS idea who would quite happily switch away from it if the wind blew the other way.

I have not seen any evidence of that, but I’d love to be proven wrong.

I don't want us to have to wait for a biomarker or an effective therapy. We know that lives are at stake.

I don’t want to wait either, but I don’t see any other options to create substantial widespread change, and not just case by case campaigning.

 

[Sasha]

There is also nothing reliable that shows it’s all in our heads. Or just a bit in our head. Nothing. Yet as you say, people are willing to believe that’s that case without any evidence.

So we need evidence the opposite way, and that’s only going to come from a biomarker or a treatment.

As I understand it, solid evidence of disease would also come from genetic association studies (such as Zhang, if we were more certain of the methodology), or some empirical confirmation of a theory such as that of @Jonathan Edwards that wouldn't necessarily be consistent enough across individuals to be a biomarker, but could be.

 

[Kitty]

There's nothing reliable that shows that it's in our bodies, and so people are defaulting to the idea that it's all in our heads.

Not only a default, it's more active than that. There are dog whistles still being blown.

A proportion of people will follow those without ever realising they're being manipulated, because to them it sounds like a reasonable opinion from qualified clinicians.

Some of the manipulation might stop or shift when we get treatment (I don't see the importance of a biomarker either, and don't care whether or not it's called a disease).

What worries me more is that there will be people with a diagnosis of ME/CFS who are left behind, perhaps because they don't respond to a treatment or their pre-screening doesn't look right. They might have a difficult time of it for all kids of reasons, but especially if the BPS theorists switch all their interest to them.

I don't think we can predict most aspects of how it will shake out, though.

 

[Utsikt]

As I understand it, solid evidence of disease would also come from genetic association studies (such as Zhang, if we were more certain of the methodology), or some empirical confirmation of a theory such as that of @Jonathan Edwards that wouldn't necessarily be consistent enough across individuals to be a biomarker, but could be.

In theory, that would be solid evidence. But I’m not sure it would be enough to create change. Because people could still say, without any evidence, that you don’t have whatever JE is talking about. Only s test or a treatment would be proof for individuals, and that’s what I suspect we need for widespread change.

 

[Yann04]

There is also nothing reliable that shows it’s all in our heads. Or just a bit in our head. Nothing. Yet as you say, people are willing to believe that’s that case without any evidence.

Because that’s been the medical default since basically forever.

If we can’t see anything wrong with you, we can’t find anything wrong with you, then you have:
“Hysteria -> Neurasthenia -> Conversion disorders -> Functional Disorders”
and god know what other “memes” have been made up repackaging the same idea.

I have not seen any evidence of that, but I’d love to be proven wrong.

Maybe not in the UK or Norway. But in most of the world, the average physician has never heard of ME/CFS before, they are a blank slate.

 

[Utsikt]

Maybe not in the UK or Norway. But in most of the world, the average physician has never heard of ME/CFS before, they are a blank slate.

Mine had not either going by her answers when I asked questions eariler, but that didn’t stop her from saying whatever she thought I had was psychosomatic!

 

[Sasha]

In theory, that would be solid evidence. But I’m not sure it would be enough to create change. Because people could still say, without any evidence, that you don’t have whatever JE is talking about. Only s test or a treatment would be proof for individuals, and that’s what I suspect we need for widespread change.

There could still be a struggle at the individual level but a global shift in perception would make that a lot less likely, IMO. I think we'll have lots of doctors switching views and forgetting that they ever thought otherwise.

 

[Kitty]

nly s test or a treatment would be proof for individuals, and that’s what I suspect we need for widespread change.

I don't think a test IS proof to be honest. Anyone with personal experience of them will know they're usually interpretations, not litmus paper tests.

But yes, treatment will definitely change things, even if it fails for some.

I'm only familiar with the UK, but being treated by an NHS consultant also shifts the needle. The reasoning goes "If there was something really wrong with you, wouldn't you have a consultant?"

[Last sentence edited slightly]