Learning to feel tired: A learning trajectory towards chronic fatigue, 2018, Lenaert et al.

Specifically mentions CFS:

Edited to add spacing

 

So they have never heard of cognitive fatigue then?

Imagining anything takes effort, particularly if you're also trying to figure out some way of doing something which will be easier, in the face of 'evidence' that this will be difficult to do.

It takes so much effort that many people, especially it seems some 'researchers' simply can't imagine something may be different from their beliefs on a subject. It's just so much less effort to keep doing the same thing, believing the same things, and ignoring any lunatics who say that thi is not reality.

 

Same for me but 5 years. Nothing like it until then. The whole obsession with fatigue is incredibly incompetent.

I also saw a ton of that in long haulers, although more commonly on a timeline of months.

 

This is my current personal perspective on fatigue:

Once a diagnosis of CFS is made you can be expected to be told your symptoms are about fatigue. I mean, its right there in the label. We do get regular fatigue, and it can be a problem, but it took a grad student listening to us to figure out most of it was not fatigue, it was something else, and measurable. The repeat CPET arose out of that. Now it does feel kind of like fatigue for many of us, but is "kind of like" the same as "exactly" fatigue? Highly atypical fatigue, maybe. Regular fatigue, sleepiness and tiredness can coexist with that, confusing the issue further in some cases.

There are a range of similar symptoms here, and we are told by some to label them all fatigue. We can have fatigue, but we typically have the other issues too.

The ME definitions attempt get around this confusion by having symptom clusters, the primary one of which is an energy/fatigue/fatigability cluster.

Long haulers are currently being told its all fatigue or some other label. Those labels are not reliable, and only objective science can establish what is actually going on.

These claims for learned fatigue have to explain the known physiology. Somehow they never do so.

 

Do an imaginary task, imagine how it might induce imaginary fatigue......

And there was I thinking unblinded research without objective measurements or dropped objective measurements had already set the bar as low as possible. Turns out there's a whole new level an ant couldn't even limbo under.

Why don't these people turn their imaginations to something useful like the nifty vending machines in The Heart of Gold (HitchHiker's Guide) where you just told it what you wanted and voilà.

Note - just don't ask it to make you a cup of tea.

 

Department for Work and Pensions (DWP) funded PACE and I think we have to accept that "cost", to the taxpayer, will be part of the appraisal of whether to fund a particular study --- ME/CFS costs £million --- therefore, funding this study makes sense. I think the fact that this research doesn't stack up in terms of economic benefit --- getting people back to work, school, higher education --- is the primary reason Governments shouldn't fund them.
If some intervention works in terms of - getting people back to work, school, higher education --- then it will logically mean the other bits of your life are likely to have improved. So this measure of being able to return to --work, school, higher education -- seems to be analogues to other indicators of improvement --- live independently, get on with whatever you want to do.

 

This seems to assume that people who are returned to work are, in fact, well enough to return, and capable of maintaining their work once they have returned to it. It ignores the possible gaming of the system by the DWP and insurance companies to return people to work to reduce, or exclude completely, further benefit to those who have returned to work but then have to cease. I recall this being a ploy of the DWP in the ealy 1990s - interestingly at about the time of the involvement of UNUM, though I am sure the DWP would have needed little assistance.

It seems to me that this is not an area of life where logical assumptions can be made. There is no syllogism which says that if you return to work, etc, then other bits of your life will improve.

 

Precisely. I had no "fatigue" until about 5 yrs ago - 15yrs after onset. And tbh i'm pretty sure that said 'fatigue' that i do now experience, is depression/mood related, since it improves with activity, while all other symptoms get vastly worse - so post activity the exhausted/sleepy feeling lifts but the weak, dizzy, in pain, sore throat, chills/sweats, faulty balance & proprioception, pin & needles, cognitive impairment etc etc etc get much worse.

 

Yea but I think we need indicators of whether interventions work E.g. these indicators (increased hours of employment, return to education ---) showed that PACE was a sham - so we need something. What's the alternative re indicators of whether an intervention works?

 

The patients tell you? Then you can discuss it in further depth...are their symptoms improving, can they do a bit more without payback etc.

The return to work or school business can be too easily gamed to make the numbers look good. Bums on seats just mean you actually managed to get there. It doesn't mean the patient isn't in excruciating pain and feeling extremely ill, it doesn't mean they're functioning cognitively. It just means they are physically present.

Also measures such as return to work or school albeit part time don't take into account the sacrifices made elsewhere. For example a person might be in bed for more than 50% of the time for less than two days a week on average. Going to work or school 3 half days a week might mean they spend most of the other four in bed, that they are far less active overall and their symptoms significantly worse most of the time. That is clearly not a success but could easily be made to look like one.

Just because something demonstrated that PACE didn't work I wouldn't assume it's an indication it's a reasonable measure.

 

The authors mistakenly assume this means that participants were actually experiencing more fatigue associated symptoms. But an alternative hypothesis is that watching the video clips simply induced response biases.

 

Indeed, or that the participants felt they were “supposed” to report more fatigue after this “imagination” exercise, otherwise they might be demonstrating their lack of imagination, and that might be a bad thing.

Healthy controls mightn’t see the shopping bags as heavy so perhaps they didn’t imagine they would be difficult to carry, and thus would imagine no fatigue or symptoms, because normally they wouldn’t have any after doing such a chore.

The less healthy person is left in a quandary however. If they report no thoughts of fatigue or symptoms, then perhaps the researchers would think they would also have no problem carrying those bags in reality, so the participants duly report the fatigue and symptoms they would expect to experience if they were asked to carry the bags.

The whole exercise is open to so much misinterpretation it’s surely worthless.

 

Spot on. Moreover, I soon realised that insisting to doctors that I didn't have "fatigue" (rather I feel "sick") confused them and complicated matters immensely.

Due to this, one psychiatrist even decided to try to set aside my ME/CFS diagnosis and diagnose me with somatic symptom disorder. (It didn't help that I told him I had terrible insomnia whereas he insisted that people with CFS were always tired and slept all the time.)

Patients learn to tell doctors what they expect to hear.


(And as an aside, my view is that research into ME/CFS is significantly negatively affected by this disconnect. Even too many non-BPS researchers are exploring hypotheses (for fatigue) that don't explain what patients really experience.)

 

The problem is that this was apparent to any rational person in about 1990 and was pointed out at the time. It didn't do any good. From that one must draw one's own conclusions.

 

Yes.

 

Of course a healthy person might think "oh yeah, grocery shopping. Boring.". One of those things you would rather lounge on the sofa reading a magazine than do or the more sporty might prefer a swim or a jog. It has to be done so they do it.

The person with limited energy and stamina who might also experience OI or pain has to prioritise. At the back of their mind "shopping" isn't just "shopping".

- You need to be up and dressed (even if not freshly washed).
- You need a list.
- You need to get there.
- You have to walk around the shop, load your trolley, unload your trolley and pack the shopping.
- You need to get it home.
- You need to at least put the chilled and frozen stuff away immediately.

You have to be able to do all of those things consecutively. Plus still be capable of some minimal food prep and eating.

All of it while feeling like you spent most of the day before up to your tonsils in vodka and redbull at a mad party where you either got mugged or run over on the way home.

The unfortunate problem is these folks don't seem to realise when you insist on looking at a problem from the perspective of a healthy person without a clue, you are looking at a completely different picture. A bit like one of those optical illusions. They think a task has a single value in the same way a kilo is the same weight no matter where in the world you are. Instead it's more like a unit of currency - it's value varies from country to country and can fluctuate rapidly from day to day depending on a wide range of factors.

So someone carrying a shopping bag to a pwME, even moderate ME, would probably be more akin to showing a healthy individual a clip of the London marathon and getting them to imagine how they might feel if they had to run it - without preparation or training.

Edit - inserted some accidentally deleted text & spelling

 

This is one of the big issues facing us. It even happens in BPS studies ... oh, wait, did I write that down?

 

Another potential issue with this type of cr@p.

The researchers seem keen to find an association with the imagery of shopping bags and cognitions that trigger fatigue.

In the rush to jump to their conclusion they forget about all the other mental associations people with health problems might have.

To physically go shopping is a massive undertaking that involves much more than just carrying a bag for a bit. It also eats into the amount of time and resource available for other things like food prep and basic self care. Pre pandemic & the rise of home delivery this is one task that many people would have loved someone to offer to do for us.

Especially, if they were already there doing their own shopping. Instead, they phone or come round and eat into our reserves telling us what we should be doing rather than helping take a little of the burden off so we might attempt some of those other things they recommend.

So shopping might have strong associations with the lack of help and support and also with the stigma of being seen as trying to get out of life's responsibilities when our days are filled with the struggles of meeting the basic responsibilities needed for survival.

Many people have financial problems, those who are on benefits are very aware the rug might be pulled out from under them with little or no notice. Barely able to make ends meet, shopping might just symbolise the constant worry. The tedium of going without this so you can afford to pay for your prescription or whatever. The old heat or eat dilemma.

Shopping when you have enough is a pleasurable thing, shall I go mad and buy the expensive biscuits? Then there's shopping for clothing, shoes, cosmetics, sports equipment, books. Whatever you're into there's a way of shopping for it that might be pleasurable. Unless you're no longer able to indulge because of finances and/or health problems.

So shopping can be a symbol of all kinds of loss. Including the feeling of being on the outer fringes of society, unable to participate in the things everyone else takes for granted.

The sense of loss that can be symbolised by shopping isn't just about hobbies or material things. The previous job or career you had or were building toward is gone. There's no light at the end of the tunnel in terms of effective treatment. This is a huge loss that goes far beyond finances. Loss of sense of control, of achievement, sense of identity, or pride in achievements and loss of status. Very hefty losses indeed.

All that loss, those potentially negative associations and yet all the researchers can see is "fatigue".

 

When I had my hip arthritis finally diagnosed about 4 years post ME diagnosis, my GP told me that swimming would be a good idea to help keep my hip muscles flexible and strong to support the joints. In principle, of course, this is sensible advice for someone without ME, but I told him it would be too exhausting for me. He looked at me a little strangely and asked me why, when I didn’t have to do a lot, I could just swim for ten minutes or so maybe three times a week until I got stronger and fitter. So I had to explain to him exactly what “going swimming” involves for someone with limited energy. I told him that far from just being able to “go”, what it meant for me was:

*getting out of bed
*getting dressed
*walking downstairs
*walking out to my car
*driving for 20 minutes
*parking my car
*walking from my car to the pool entrance
*walking from the door to the reception desk
*buying a ticket
*walking to the changing room
*getting undressed
*putting everything into a locker
*walking from the locker into the pool area
*walking from the pool area entrance to the pool side
*walking from the pool side to a ladder
*climbing down the ladder into the water
*ONLY THEN swimming for ten minutes
*climbing out of the pool up the ladder
*standing in the shower for five minutes and washing my hair
*walking back to the changing room
*drying myself off
*and then repeating the entire previous process from the “getting dressed” bit to the bed bit, but in reverse, and that going back to bed meant collapsing back into my bed completely exhausted and then not being able to do anything else for the best part of a month.

He saw my point.

But healthy people never actually stop to consider all the steps that are necessary to achieve something they see as easy and everyday because they’re simply focused on the activity itself. And to them it is easy - the activity is what’s important to them. But we have to focus on everything else because, quite often, the actual activity is the least exhausting part of the entire process - it’s the preparation and completion parts that cause us the issues. And no one who doesn’t have to consider that, unlike patients and their family member and friends who see what this costs us every day, understands that.

The strain of the mental and emotional energy calculations we have to make for Every. Single. Thing we do, (while also knowing that often we will get it wrong because of the unpredictable nature of ME) - deciding whether or not the thing we need to do has to be done or can be avoided, or whether something we want to do (because we need to have at least some quality of life) is worth the price it costs us in pain and increased symptom load - is incredibly stressful. And doing them while knowing that getting any one (or more) of them wrong could have devastating consequences for us, and making these decisions so many times a day over and over is one of the hardest things to deal with as part of this illness, I think. And it’s something so poorly understood by just about everyone else, most especially those who are charged with our medical care.