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

Figure 1 contains a literal circular argument - (CS) fatigue causes (CR) fatigue which cases (US) fatigue which apparently feeds back and causes (CS) fatigue.

This explains the rationale of Graded Exercise Therapy (GET), which is a type of Cognitive Behavioural Therapy. The idea is that there are expectancy effects (or "associative learning") that either cause or amplify "fatigue" associated symptoms and that this expectation/association can be unlearned in a controlled environment.

This is why GET is based on doing a similar amount of activity each day and does not focus on intensity of activity and subsequent rest periods, which is what would be required if GET was designed by an exercise physiologist and was focused on increasing fitness or conditioning.

But they are suggesting that the effect is not generalisable to all contexts as a way of explaining why GET may be ineffective.

 

This sounds like the stuff I'm reading from the Wessely School, Maudsley Hospital and Oxford psychiatry department in the 80s, so it's at least as "new" as the walkman.

Unsubstantiated derogatory prejudice dressed up as science.

 

Funny how perspective is everything. I thought that we patients learn how to ignore symptoms as much as possible.

 

How would this learning model seek to explain the "fatigue" of those with a clear relapsing/remitting illness. Is the remission also learned? How does one learn the cyclical behaviour and what caused the original cycle from which the behaviour is learned...allegedly?

 

Are you *expletive* kidding me?

 

If they actually did a proper study using objective outcome criteria:

• electronic activity monitoring - actimetry/actigraphy;
• ability to return to work/study;
• ability to do normal household activities;

and GET was shown not to work then, in a real world context, it is irrelevant. OK it might live on as some psychological mumbo jumbo ---something for those interested in that!

 

I think we need to be very cautious about "ability to return to work" as an objective criterion. It is becoming increasingly clear to me that much of this mumbo-jumbo was dreamt up at McMaster where it would appear that there was a close relationship with insurance companies whose sole interest and aim was to get people back to the workplace as soon as possible. It comes down to how one uses the word "ability".

I have an unproven suspicion that it was this close and obvious relationship which led to the area of "scholarship" having to be reinvented and the original expunged from the record. Who had ever heard of Arthur Cott - at least until I became such a bore on the subject.

And now @Medfeb has alerted me to the joys of the wisdom of James D Talmage the possibilities are endless.

Those who judge this criterion may not be objective.

 

How did my lymph nodes learn how to be sore and swollen?

What about all our other symptoms?

 

That's a good point. It's like these researchers genuinely believe that "fatigue" is the only real complaint that people with this illness have, and they just somehow ignore all the rest of the symptoms.

The more I think about it, the more I'm stunned that these people have gotten away with publishing what's essentially victim blaming disguised as science like this for decades. And somehow it's the patients that are cast as the bad guys in this whole sherade.

 

It's as if they've never actually talked (or listened) to a real patient.

 

I think that is the core problem in this whole field, actually. The patient voice and the lived experience has been systematically marginalized and ignored. That's the only way you can end up with false narratives that are so far removed from the actual experience of living with this illness and the symptoms that the patients describe.

With inventing the concept of "unhelpful illness beliefs" as the supposed core of this illness, the Wessely-school have effectively managed to silence and marginalize the voice of the patients for decades. If you, as a healthcare provider, subscribe to this false narrative, you will delude yourself into thinking you're actively harming your patients by listening to and believing them. Because if the core of the illness is "unhelpful illness beliefs", going along with their own experience of actually being sick will validate the experience and thus perpetuate it.

This is of course a delusional, false and unethical narrative, but it's been the dominant one in many parts of the healthcare sector.

 

That's precisely the Catch 22 we've been stuck in.

While it was "just" patients speaking out about harmful treatments and so on doctors wouldn't listen because it was part of our "delusion".

No one else woukd speak out because they didn't know what was going on. Why would they believe individual patients over a whole profession dedicated to healing?

The patient smearing publicity made sure that the general public stayed firmly on the side of the pro BPS establishment.

Worst of all - this was all being done under the guise of being for the patient's own good.

The "system" with it's guidelines and increased central control over treatment and patient care becomes part of the problem when it is unduly influenced by the status quo. Worse still they create a culture where those working within the system unquestioningly follow the guidelines issued.

Let's hope we're starting to see some of the links in this chain weaken.

 

I hope we're about 4 days away from one of the strongest links being cut with a metaphorical bolt cutter.

 

I hope so.....but even if the actual guidelines aren't much different than the draft ones we'll still have our work cut out for us.

A change in guidelines would be the first step and certainly give us some leverage to get things moving in the right direction but still an awful lot of heavy lifting to be done.

Individuals will still have to use the guidelines when docs who don't have a special interest and aren't up to date try to send them off for GET (or whatever they call it next) or CBT as a curative treatment.

As we've already seen in another thread BACME have had a conference on discussing the "new" hypothesis that perpetuates ME (dysregulation) completely ignoring the draft guidelines warn against GET so the hypothesis behind it is wholly irrelevant. I suspect they hope if they throw a new lot of meaningless words, as long as they're different words, at new patients then they can carry on doing the same treatment regardless.

I don't want to downplay the new guidelines. If they're like the draft then that's a huge step forward & I'm very grateful for everyone who's helped get us this far. Unfortunately, as progress was set back for over 3 decades by the BPSers we still have a long road ahead.

Edit - typo - replaced word are with aren't in first paragraph.

 

I have said this before but I will say it in capital letters in case someone form the BPS is monitoring this forum.

!!I DID NOT GET FATIGUE AT ALL FOR THE FIRST 10 YEARS I WAS ILL!!

I crashed if I did too much but had no idea I was doing too much until I suddenly could not do anything; I had extreme burning and muscle pain; my symptoms varied from hour to hour, day to day and week to week; I had OT and no temperature control; sudden paralysis; my speech and I had bulbar palsy; I had episodes of blindness, well I fit the definition of ME as Ramsay reported it in the days before CFS, that long ago time when fatigue was not a required or universal symptom.

 

Found this "research article" (using the term very loosely here) on the Twitter-profile belonging to the "candidate" behind the now infamous LP-study, btw. The article is very similar to her theories on what ME is, so by posting this I guess she's trying to give the impression that her view is "science based"?


https://twitter.com/user/status/1426124983403786244

 

IMO this 'stuff' should be covered by anti pollution regulations, like most stuff that is the end point of digestion is.

It's not science, it's not research, it's not therapy, it's not even opinion.

It's dogma.

Pure, unthinking (and proudly so), unquestioning, dogma.

 

Sci-hub link for those without other access - https://sci-hub.se/https://doi.org/10.1016/j.brat.2017.11.004

The mythical 'deconditioning gets a mention: