UK: Aberdeen Uni: Major new study aims to increase understanding of fatigue

What I'm saying is that we already know the specifics of fatigue in severe ME, and literally nobody cares. PEM and complete inability to exert yourself even minimally and do pretty much anything in life. In what other illness do they struggle to recruit patients for studies because they are too sick to participate? I'd really like to know. I don't think there are any. Yes, there are some edge cases of heart failure or cancer patients with extreme fatigue that may look like ME but those people are on the brink of death so it's a totally different thing. And even then, most people who are on the brink of death are still not as fatigued as severe ME.

If using AI to spoon-feed obvious information to doctors will change their mind I'm all for it. But i don't see why this would do anything when they have ignored literally everything else we have thrown at them. Even if this study managed to find specific fatigue signatures, doctors would just send you to a psychologist if they found the ME fatigue signature. I already know what they will say: ME fatigue is too extreme and without any biological abnormality so this study proves it's psychogenic.

POTS literally has a diagnostic test with a specific orthostatic intolerance signature yet nobody thinks it's real. If doctors think ME is psychological, why would they take any fatigue signature seriously, other than to confirm you have a psychological condition? They already do a similar thing with FND. I don't get how this would help.

We literally can't win. If ME fatigue has a specific signature, it's the signature of psychosomatic fatigue. If it doesn't, we go back to the previous issue of fatigue being a generic symptom that doctors don't take seriously. You can't reason with people when they are this biased.

 

Fatigue is 90% of my ME. Always has been.

 

There was a doctor in Alberta, Canada, working on ME research several years ago who said that one of the biggest problems with doctors diagnosing someone with fatigue was the fact that they couldn't distinguish between the different types of fatigue.

I'm editing my message as I realized that I missed out the point of this doctor's comment. She said that if doctors actually listened to what patients were telling them about their fatigue, they would realize that there were differences in how a patient describes the fatigue of ME/CFS, compared to something like clinical depression or burning the candle at both ends and being burned out as a result. She said that they were three very distinct things but most doctors don't pay attention.

 

People who have it may be able to.

When I developed inflammatory arthritis, it came with a new type of fatigue. My GP didn't believe I could tell the difference, but it was fairly obvious to me. The new type was a pretty constant line across a graph, whereas my ME fatigue looks like a child's impression of the Himalayas; also, it wasn't tied up with pain in the same way (painkillers partially relieve my ME fatigue, but had no effect on this). I knew when it began, I knew when it started to fade out once I was on treatment and the condition was damped down, and I knew when it flared again once or twice.

I don't know what this says about the nature of fatigue, but a specialist might if they listen to enough of these accounts.

 

This is a bad faith argument because there has been radio silence on severe ME by doctors for over 40 years.

Let's assume that the issue really was that doctors can't tell fatigue patients apart. A good place to start then would be an illness where fatigue is the main characteristic and can become so extreme you can't even participate in studies or feed yourself. An illness where the difference is clear cut, and there's absolutely no way you could mistake it anything other than what it is. If only there was an illness like that, hmm...

Instead, after decades we still have articles putting ME fatigue in the same basket as depression or stress because it's just so hard to tell them apart. I'm not referring to this study specifically, AI could be promising I'm just saying in general.

When doctors are throwing their hands in the air like this it's clear that they are bullshitting. I've interacted with many over the years and I've seen this behavior over and over. "Oh sorry we can't do it it's too hard". Really?

If you can tell apart Parkinson's from MS surely you can also tell apart a severe ME patient from someone who has depression. People with depression improve after 5 minutes of exercise, people with ME get worse. It's literally so easy.

Why do ME patients get diagnosed with depression even if they don't have any mood issues? Is it because the two are indistinguishable, or is it because of bad faith? Why do they get diagnosed with anxiety if they have POTS? Is it because it's impossible to tell the two apart? Not like POTS had a biomarker or anything...

 

To be clear, i like that they are using AI to study fatigue. What i don't like is that 1) they go with the obvious BS narrative that a doctor can't tell tired and extreme fatigue apart and 2) even if they do find something specific about ME fatigue no doctor will take it seriously.

Not sure what can be done about point 2, but at least they could have avoided point 1.

 

So you're saying there is really no point me hanging around S4ME, sitting on committees, advising on research project or anything because I don't really care, and Chris Ponting doesn't care and Luis Nacul doesn't care anyway?

Your argument makes no sense to me. You claim that PWME can tell that their fatigue is different from fatigue in other conditions. How does that make it such that doctors can tell? They don't have the symptoms. They have to ask you to describe them.

And how do you know people with cancer or heart failure do not feel like PWME? Have you been in that situation? Ask Kitty says, it seems likely that there are some important differences but hard to describe except in terms of profile - steady or up and down maybe. And that is how doctors often make diagnoses. In RA the symptoms follow patterns during the day and over weeks. This is how proper medical science is done - we study DETAIL.

The situation would be the same for nausea. Nobody yet has told me what is different about fatigue in ME other than its profile (i.e. PEM) and nobody has ever told me in what way one nausea is different from another. But the profile of nausea will easily distinguish food poisoning from metastatic breast cancer. One comes on suddenly and goes away, the other creeps up over weeks. And we can see how that tells us something we can make sense of in terms of causation.

The key problem with ME is getting an idea of the structure of the cause - is it a feedback loop or a persistent infection or a metabolic defect or what? In medical science you study profiles of diseases to get a handle on such things. Then you have some chance of looking in the right place.

If this sort of research were dismissed by PWME I would simply lose interest and assume they weren't serious about having their illness understood. I might even think they don't want their illness understood. But fortunately I hear a lot of people who take a more constructive approach!

 

I have developed a muscle specific fatigue. It feels like some muscles in the thigh are weak, and when exercised begin sending fatigue and "injured and sensitive" signals. The key is that I can feel it locally in the muscles but also as generalized fatigue and malaise that has no specific location. Maybe if that problem is less severe, people don't notice much wrong with their muscles but still feel the nonlocal fatigue and malaise?

But that might have more to do with the muscle problems I have developed than ME/CFS.

 

"literally nobody" was a way of saying. Clearly that's not true, there's a very small minority of researchers and doctors who do care. But then again, you can find a very small minority of scientists that deny climate change too so that's not really saying much. I'm not belittling ME researchers, but they are such a small and irrelevant minority in the grand scheme of things that their voices are not really heard at all. I do not blame them and applaud them for trying their best.

My point was that I don't think anybody outside of small ME circles will care. For us, it might give some insights yes. I suppose it's better than nothing, but I don't particularly like the narrative they went with that you need to look at the granular details to tell what's going on and at the same time lumping together types of fatigue that are so extremely different from one another.
As you say, doctors simply needed to ask the patients some questions and take their answers in good faith. I don't think they struggle to tell stress or depression apart from ME fatigue because they lack attention to detail and need help from AI to rectify that, I think they simply don't take the answers you give them in good faith. I doubt this study is going to change that. I've lost count of how many neurologists told me that my fatigue isn't real and that I can " do anything i want", while i was trying my best to describe every little detail. Same thing goes for cognitive impairment. I describe in granular detail my limitations and the answer: "it's not true, you don't have cognitive impairment. Consider yourself lucky". I mean, if me telling the same things to the AI and the AI relaying them to the doctors will get them to start taking the situation seriously i'm all for it but i doubt it will happen lol.

The narrative of the premise does not sound good, but if they do solid science I'm all for it. I hope they do. Perhaps it is not wise to judge a book from it's cover, but i've heard the same BS narratives for so long I feel like it's good to call people out on it. I wouldn't assume good science to happen on faulty premises but happy to be proven wrong.

 

I didn't mean to say that people like JE or Pointing don't care, apologies. What I meant is that for every person who is by our side there is an army that is against us. I don't think that is because doctors are trying their best to look at the details and failing, like the premise of this article implied. It's more that they don't care to look, and even if you spoon-feed them the information they will ignore it.

 

Afaik our understanding of the fatigue in ME is that it is extreme and exertion makes it worse. This ought to be enough for a doctor to take it seriously but it isn't a sufficient understanding of how the symptoms change over time.

Symptoms in many people fluctuate wildly over time but we have no idea in what way and that's important to know - are there patterns?

I would personally like to see more longitudinal research. In addition to symptom tracking and actimetry also biobanking. If you compare blood omics between a good week/month and a bad week/month can you see a process unfolding? Is there some correlation between symptoms and molecular profile even in one individual.

 

Thanks @Jonathan Edwards - really good to have expert commentary on how actimetry may be useful and therefore, how it can & should be researched.
There's a new policy, within Horizon Europe, i.e. aimed at addressing the systemic underfunding of diseases like ME/CFS. That may provide another route to investigate this further.

 

I am not sure that this is true. Many people are too ill to carry out essential daily activities and have to rely on carers to help them to do just these tasks, much like people with ME. It would make sense that they refuse to participate in studies because it would be too much of a burden for them.

Further, we are not sure that PEM is completely specific to ME. People with metabolic diseases apparently experience a similar pattern following exertion.

I agree with the sentiment but it is a short-sighted view. Even if identifying different disease-specific fatigue signatures may not help people with ME immediately with regards to the medical care that they receive, it should certainly help researchers, especially with improving case definitions of ME/CFS (to avoid misdiagnoses and thus the contamination of a cohort in a study). This would increase the quality of biomedical research on the disease, which is paramount to finding both its biological underpinnings as well as treatments.

 

We'll see what comes from it. Hopefully it won't be along the lines of Chalder, Moss-Morris, White, Crawley, et al. You know, the "experts." Given the track record, I can't help but have some fear. Maybe it will lead to some paradigm shifting like the IOM Report did. Hope that it is not just some aspirational dream. Time will tell. In the meantime, we wait.

 

I recall that Jonathan motioned that the MRC group he was part of, tasked with identifying potential research, identified GWAS (since funded - Chris Ponting's project) only other thing was this i.e. actimetry (Fitbit type devices).
Great to see this (actimetry) progressed.

 

if they can do that i think it would be useful.

The only thing that worries me is these 2 statements...

(my bolding)
It worries me that what will come out of it is something akin to
'this study shows definitively that people who are less active get more fatigue and have more fatigability'..... 'therefore building more activity into everyday life is the answer'.

which we already kind of know, but that just isnt that simple when it comes to ME...
but that will still be sxtrapolated & applied to us & the story will go... 'since ME/CFS is just another form of fatigue, then what we've been saying all along to PwME - that they just need to find a way to do more... has now been confirmed'.

I hope that isnt what will happen.

@Jonathan Edwards said up thread that the lead researcher sounds sensible, & he knows a lot more about this stuff than i do, so i will keep an open mind.

 

This is exactly where my fear is coming from, @JemPD

 

I haven't been able to read the actual paper in full here but have read the comments. I do certainly agree with concerns about how things are going to be mapped time-wise as ME is indeed ripe and has suffered from those who see what they want to see. Any subject doing poor correlation-based stuff saying iller people do less and so the reverse is the cause will be a nightmare. The patterns and really working out how to pick these out is going to be key in authenticating patient testimony and picking through what indeed might be variation across a diverse cohort.

This study, or the concept in theory, is interesting timing for me as I was about to respond to the Knoop paper noting that one of the major issues I think with the area is that somehow the field of 'fatigue' hasn't moved onto the elementary stages of even mapping the different fatigue concepts. It just became so long I didn't know how to post, because there genuinely are so many 'bits' bundled under what influences what someone at a point of time is meaning when they say 'tired'. Are they measuring what they think they are measuring (I genuinely think that they think* they've discovered something genius in their 'perception of doing more is what mediates fatigue' vs other BPS because of their pseudophil making them sound so self-convinced even though it defies logic).

From whether they've had coffee or done a small jog on the spot to wake their brain, played some music to get themselves going or jus had someone either geeing them up or doing a bit of mind-games on 'how has your fortnight gone, oooh well when you think about it that sounds like quite an achievement bla'. Then you have actual fatiguability, combined with what someone has done in the run-up, and when, how their night's sleep went - which is different to how they are sleeping in general before that and whether it is refreshing or they have aches and pains, and if you'd had someone try and find an awkward room having done a difficult journey then waited to speak to someone who made them fill out endless forms.

These are all very different measures and none are controlled for - which is particularly weird for a subject that believes itself to be part of psychology which is supposed to be all about spotting and understanding these layers in order to be precise in methods for getting to the bottom of certain concepts or actions.

If you have been mentally exhausted then does what you say on that form end up much lower than what someone who is actually more exhausted but had an easy run in with a cup of coffee and their favourite tunes put down when the questions are badly phrased? almost certainly - because noone knows what they are asking.

I'd keep going for however long doing what I could and found that when over-threshold then it would affect ability to rest and at some point you'd be feeling invincible (not really but for ME level) then wired-tired and then 'out' level of exhaustion people couldn't imagine when I was less severe. Fatigue is insulting in describing all this, it's lying down unable to support your own head and arms then sliding over to the side at some point stuck in the exact same position just totally done. Those who have had to be in the world with ME are the ones who have been able to acknowledge fatigue the least because of what we've had done to us and the culture towards us. So how are we being asked to describe the little feelings normal people might get whenever that we can't even imagine because we've had to push through it all or whatever patronising term psychs came up with. It's bodily deep-bone-aches when you are walking on already tired and PEM'd shins.

So my big question is also whether if it is going to cover 'ME/CFS' will it cover the illness bits that get lumped as fatigue and are exertion-related but are nothing like what other concepts of tiredness are? I think people don't realise what a hard question it is to ask someone with ME to describe how they feel, and symptoms in relation to things and to feel they've done it justice after the fact. For a start it is a big task, and we are working against an egg-timer of energy in trying to be self-aware of things we just have to get on with on top of trying to communicate something that the receiver is often absolutely adamant to mishear. SO I can very much understand the concerns if only tiny bits of a phenomenon might be noted because of these various reasons