"Explaining the Unexplainable: Chronic Fatigue Syndrome"

[A.B.]

They simply borrow the language of rational thought and science when they feel like it, but actually they have beliefs based on revelation, intuition, and a desire to prevail.

They dress like a scientist but think like a theologist. Here's the conclusion, now let's try to reconcile it with reality.

 

[duncan]

I keep going back and forth between the notion that most of this ilk are either dangerously cult-ish or something more akin to a juvenile comedy routine.

This morning, I am reminded of The Knights Who Say Nee!. I feel we should offer up a shrubbery. But my understanding is that once again they have changed their minds and are now insisting they be addressed as The Knights Who Say Ekki Ekki Ekki Pitang Zoom Boing!.

 

[Snowdrop]

For the BPS it's all good. They're prepared to use any language they think will be more scientific to make the point that they will not relent from even as their communication of concepts does an about face.

Yes, let's use brain--not mind--we wish to be scientific--but understand that the mind is still in charge (although we'll leave that as implicit).
Your mind is sending signals to your brain telling it to behave badly--you are still weak willed, undisciplined, possibly not to bright and lacking the fine character we find in our illustrious BPS selves--your mind--ah hem--we mean brain still needs correcting--there is no possible other explanation and resistance is futile (so give up now already and stop being vexatious).

It seems that at the same time we are being weak willed we are extremely strong willed and defiant.

 

[lansbergen]

It seems that at the same time we are being weak willed we are extremely strong willed and defiant.

 

[TiredSam]

It seems that at the same time we are being weak willed we are extremely strong willed and defiant.

Our stubborn insistence on our right to be weak-willed does really seem to annoy them.

 

[Woolie]

Closely related to this, there is also the confused thinking that equates any brain abnormality with psychological problem fixable by psychotherapy.

Yes, exactly, @A.B. In fact, any brain-based model of ME/CFS, irrespective of its sophistication, can lead us in only one direction: psychological/behavioural treatment. Or exercise-based approaches. This includes the fancier ones like Neil Harrison's. Harrison's model has been applied to other "unexplained" illnesses, and what came out of those was a recommendation for therapy and physio.

 

[duncan]

Yes, exactly, @A.B. In fact, any brain-based model of ME/CFS, irrespective of its sophistication, can lead us in only one direction: psychological/behavioural treatment. Or exercise-based approaches. This includes the fancier ones like Neil Harrison's. Harrison's model has been applied to other "unexplained" illnesses, and what came out of those was a recommendation for therapy and physio.

I'm not quite clear on this logic. What about BSE or brain cancer? Or Lyme encephalomyelitis? Psych/behavioral models are as useless in these as wishing on fairy dust. If ME involves chronic low grade brain inflammation that is sourced in some unknown pathogen in the brain...What then?

I have no tolerance for this BPS shit, but could we not be dealing with a primarily neurological disease that manifests as neuro-immune disorder?

I do appreciate how this concept can be (and already is) used against us by unscrupulous groups, but if there IS a stealth pathogen taking root in our brains, then we need to confront that, identify and own our disease, and dismiss attempts at BPS or similar manipulations.

If it is all immune-centric, I'm good with that, too. I am after the truth, as we all are. I'm just saying simply by our illness being rooted in the brain, doesn't necessarily make it a brain dysfunction, and doesn't mean we have to concede an inch to BPS peddlers.

It can mean it is a disease located in the brain, and we have to find a way to eradicate the pathogen, or mitigate its damage.

 

[Woolie]

'm not quite clear on this logic. What about BSE or brain cancer? Or Lyme encephalomyelitis?

Quite so, @duncan. But if you look closely at the brain models of ME/CFS, the dysfunctions are always seen as reversible. They are due to learning, and can therefore be unlearned.

If someone finds evidence for an actual pathogen active in our brains, or irreversible brain damage, then I'm listening. But as long as the brain abnormalities are seen as "reversible" and lead back only to psychology treatments and models, then its same old, same old.

The key when reading these articles is to focus on the suggested cause of the dysfunction described, irrespective of the terminology used (brain or mind). If the cause is learned experience - and the treatment is "unlearning" that experience - then we are talking about a psychological account. If the cause is tissue damage, actual pathogens, or learning in a very narrow biological sense (e.g., the way the immune system learns from exposure to pathogens), then its not a psychological model.

True though, that I should have qualified that earlier.

 

[duncan]

Yep. Agreed (not that you needed to qualify anything. I chalk up my not understanding to my afternoon fog. ) Thanks for clarifying.

 

[Bob]

Forty comments under the article. Ignore the first one - they get better immediately after that.

Edited to add: And then there are plenty of really bad ones, but @A.B. has carried out a spirited debunking of the pseudo-science! With the help of a few other great commenters.

 

[Snowdrop]

Actually I found the comments quite awful with a few very good exceptions.

 

[halcyon]

The comments are just getting bizarre. There are a lot of people singing the praises of Dr. Sarno and his book in a really unnatural way. Feels like someone was paid to post them.

 

[halcyon]

Oh I see why. Apparently Sarno and his TMS concept has a bit of a cult following.

http://www.tmswiki.org/forum/threads/article-on-chronic-fatigue-syndrome-by-dr-schubiner.12744/

 

[Woolie]

The comments are just getting bizarre. There are a lot of people singing the praises of Dr. Sarno and his book in a really unnatural way. Feels like someone was paid to post them.

Yea, its like looking at a page about spiritual healers or something. So many "believers" who have "seen the llight".

I'm fine with people being loose and free with their feelings about a treatment. If you think healing crystals changed your life, well that's great! Its just that these posters think they're being so much more "rational" than the crystal healer folks. It all sounds so plausible on the face of it, and nobody bothers to think any harder.

 

[Woolie]

Oh I see why. Apparently Sarno and his TMS concept has a bit of a cult following.

http://www.tmswiki.org/forum/threads/article-on-chronic-fatigue-syndrome-by-dr-schubiner.12744/

Man, @halcyon, this stuff is surreal! And I checked - these are real followers. Not just a bunch of folks paid to promote this stuff.

 

[halcyon]

I missed a lot the first time I read the article. There's a lot of horrible stuff in there. First, he links to these people who consider CFS and FM a 'psychophysiological disorder', which is a new one on me. Oh, and Schubiner is on their board of directors, he fails to mention that in the article. He (and one of the commenters) are also on Dr. Sarno's list of "TMS doctors" who he refers patients to.

I completely missed the "brain research" mentioned in the subtitle the first time around. He appears to be talking about this paper, which surprise surprise, is talking about central sensitivity syndromes.

 

[Woolie]

@halcyon, I looked at your links. I'm going to have nightmares tonight

 

[Dichotohmy]

I think its been mentioned here, or maybe in the comments section at Psychology Today, but this article is another example of fixating on the fatigue component of ME/CFS. I can speak for myself to say that fatigue isn't even in the top 10 of symptoms for me; and furthermore, I don't even really ever experience fatigue unless I'm in PEM.

Sadly, though, fatigue is an easy strawman to attack because its so vaguely defined and relatable by pretty much everyone. More insidiously, fatigue is also attributable to the equally vaguely-defined concept of depression, which the article has undertones of suggesting of etiology to ME/CFS and isn't surprising given the source.

 

[Woolie]

he equally vaguely-defined concept of depression,

I feel strongly about this too, @Dichotohmy. The term depression seems to be so ill-defined that you can now qualify as having a depressive disorder with no more than a period of low mood (which could be anything!). Even that doesn't seem necessary - sometimes, the label is given for a bit of unexplained insomnia or tiredness. Then people do studies and find that depression and fatigue often co-occur - well no wonder, that's one of the criteria that contributes to the diagnosis!

Putting ME aside, we're never going to get anywhere understanding the psychological problems that distress people if they are defined as loosely as this.

Welcome to PR, by the way!

 

[A.B.]

Forty comments under the article. Ignore the first one - they get better immediately after that.

Edited to add: And then there are plenty of really bad ones, but @A.B. has carried out a spirited debunking of the pseudo-science! With the help of a few other great commenters.

Unfortunately I got carried a way a bit. This stuff makes me angry. I hope that it made at least some of them realize how poorly supported by science this stuff is.

All the illnesses without objective markers need good science more than ever, because there is the risk of the literature being drowned in junk science reporting false associations and false positive outcomes. Science can only make progress if interventions that don't work are discarded properly.