An interesting article

[hodini]

Hi All and Happy New Year,
I have been in the thick of it the last few months so I have not had time to make an appearance, but I do think of those with whom I have communicated with (your all in my head LOL).

I thought some of you might find this article of interest since it sounded familiar in parts in controversy, ideology, etc.
https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue?utm_term=.syjmqBw0m#.qcymovM0m (Inside The Controversial Therapy For Chronic Fatigue Syndrome That Some Patients Call A “Cult”)

 

[plum]

Hi All and Happy New Year,
I have been in the thick of it the last few months so I have not had time to make an appearance, but I do think of those with whom I have communicated with (your all in my head LOL).

I thought some of you might find this article of interest since it sounded familiar in parts in controversy, ideology, etc.
https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue?utm_term=.syjmqBw0m#.qcymovM0m (Inside The Controversial Therapy For Chronic Fatigue Syndrome That Some Patients Call A “Cult”)

Hmmm.

I read the article and then had a look at the website. I can't say I'm impressed (for the Brits - "as featured on Lorraine Kelly"... televisions bonehead of boneheads, not a great endorsement). What I don't like is the opaque nature and the throwing in of the word 'neuroscience' as if this legitimates the whole thing.

The thing is hodini, as you know I have a bristling contempt for any kind of cultishness or manipulation. This seems to sail close to that vibe.

 

[Gigalos]

Great Post, Hodini! I love how your posts keep us aware to not become too cultish or manipulative and stay critical about how the idea is getting applied and distributed.

I agree with Plum. Although I get where this guy is coming from, I believe he applies it in a way that is more harmful than good to the idea that it is just a way of the body saying no. Making such claims as that you will get better permanently and that there is no possibility of relapse is just an example. He does it to increase the chance of success, but I feel he should be just frank and open about what he does and how it works according to his ideas.

One of the things that stands out for me in general is that people who suffer from CFS can react very aggressively when they get confronted with the idea that there may be a psychological driver of it all. I believe they either got confronted with it too many times as many doctors and laymen will tell them that is their first hunch, or they share some traits that makes their brain feel very threatened about it. Meanwhile medical doctors still don't have a clue about what it is and what sets it off. But my hat falls off when I see people claiming that CFS can be either psychogenic or real. What?? People who get better apparently suffered from the psychogenic variant and people who don't get better suffer from real CFS...?? Is that scientific evidence then?? I believe not. I hope the studies that Schubiner et al. are conducting right now will give doctors new tools to separate between mindbody and genuine conditions.

There are in my mind two drivers of mindbody symptoms:
1) stress about the mindbody symptoms (vicious cycle)
2) personal stressors; stuff that your brain interprets as dangerous. These stressors can be around all the time or can have a more episodical character, which also explains why some people suffer from TMS chronically and others episodically.

For some people resolving the stress about the symptoms is enough but for others it isn't as they either don't acknowledge, recognize or accept the stressors and why they are susceptible to them. [edit: or they do but are unable to change how they react to the stressors. Some people with other mindbody conditions also encounter this.] As science has no better explanation for stuff like CFS yet, this is my best explanation for why some people recovered and others didn't. It isn't scientific evidence either, but when you don't have any evidence at all, stick to the most straightforward theory. For me that is TMS.

enough rambling for a Saturday, cheers!

 

[Lainey]

Hello Gigalos

Guess I am unclear regarding the CFS controversy regarding the claim from some people that CFS can be either psychogenic or real. I agree with what you are saying regarding the absence of scientific evidence. Why do those with CFS cling to the idea that this could not be created by their minds?
My thoughts go to the reality of TMS in that TMS can and often does have accompanying body anomalies, such as herniated discs, worn cartilage, headaches, etc., but these body symptoms (real body issues) are not the cause of the pain. The pain can go away once the sufferer learns to accept the reality that their brain is creating this pain as a distraction to other, more disarming emotional issues.
Is the diagnosis of CFS more psychologically disarming for the sufferer? I guess I am rambling too. I have known CFS sufferers and also know they want to feel better. I wish them the best outcome possible.

Lainey

 

[Time2be]

if the method that is used is not described in the scientific paper that evaluates this method, then this is not a scientific paper. This seems to me pseudo-science. The whole setting of this therapy comes close to a cult, yes I think so. Whether CFS is more psychological or somatic, well I don’t know. The problem might be the distinction as such. And maybe there are to different types with different causes, like with irritable bowel syndrome and Crohn’s disease (though also Crohn’s disease has a strong psychosomatic component, but is a disease with tissue damage).
This is what I like with the TMS approach: it follows the rules for good science, making its theory, therapy, method and result public. It develops with the contributions of many therapists, doctors and even layman. And it is not dogmatic.

 

[Gigalos]

Regarding the aggressive reaction of some CFS sufferers on the idea that CFS might be psychogenic....I do believe CFS sufferers simply are fed up by people telling them from day 1 that they shouldn't moan and simply become active. They have become allergic to terms like psychogenic or psychosomatic and I fully understand that as it isn't fair. TMS teaches us that CFS is real, you are really exhausted from doing virtually nothing because real changes took place in the body as a result of spending your time chronically in survival-mode often without you even being aware of that. So to any CFS sufferer out there reading this thread, be aware of this difference, you aren't imagining your symptoms at all. Again, I have little evidence that CFS is always TMS, just as there is little evidence that it isn't always TMS. Btw I seriously doubt you can conquer it in a matter of two or three days, I think several months is a much more realistic prospect. Anyway, just explore the possibility is all I propose, don't dismiss it right away.

@Lainey I believe I read it somewhere in the article and/or the comments. To any CFS sufferers, I wish them the best outcome as well.