Chronic Fatigue Syndrome’s Spiritual Causes and Cures – plus woo

[slysaint]

Not sure if this article has been posted (from Last year); it might breach the forum regs @Kina (?)
But it does do a 'nice job' on PACE:

https://wp.nyu.edu/therevealer/2016...fatigue-syndromes-spiritual-causes-and-cures/

"Medicine’s failure to explain or effectively treat ME/CFS has created a cottage industry of sorts, a panoply of cure-focused websites and books that offer help and hope to sufferers."

"ME/CFS provides us with yet another sad but fascinating way to view the medical industry’s gendered approach to suffering, pain and fatigue."

"The effectiveness of self-help solutions for ME/CFS was confirmed by a splashy study published in the British medical journal, The Lancet, in 2011. The study given the acronym PACE for the treatments it supported—Pacing, Activity, and Cognitive behavior therapy: a randomized Evaluation—found that the real cures for ME/CFS were not pharmaceutical or scientific but plucky determination. In short, the study advises sufferers to get some exercise, a good psychotherapist, and some gumption."

 

[slysaint]

In search of more 'woo woo' (thanks @JaimeS for pointing these out to me!)
Infuriating Youtube webinar. Some of the slides:





Slide three is a revelation.

 

[SilverbladeTE]

My thoughts on such bozos

 

[hellytheelephant]

....I'm more worried about slide 3- something about riding out of a womb on a bike..?!?!?
I wonder if I could use my mobility scooter instead...

 

[Mohawk1995]

I would call myself a believer and I still have trouble following this article. To me there are some very simple questions in form (not substance) that need to be addressed before an honest discussion of ME and spirituality can occur. Contemplating the answers is not necessarily a waste of time while it isn't an automatic answer to the cure for ME either. I can tell you that I have contemplated much of what is mentioned in the article over my life and especially that last 10 years or so. At the risk of breaking Forum Rules I will not go further.

 

[JaimeS]

In search of more 'woo woo' (thanks @JaimeS for pointing these out to me!)
Infuriating Youtube webinar. Some of the slides:

View attachment 20698
...okay.
View attachment 20699
...worse, but... ugh... okay.
View attachment 20700
Here's where even my willing suspension of disbelief wobbles and crashes to the ground. I have so many thoughts, guys.

Repressed guilt is sore muscles? Why not anger? Why not fear? Why not anxiety? I mean, if we're really linking it to "holding our bodies in a tight and uncompromising position" being the only source of muscle soreness (itself a ridiculous statement, but okay), wouldn't any such emotion do this? Why have we linked guilt to it? What possible reason can we have to link this particular emotion over others?

HEADACHES are a result of lack of communication... with oneself? Why not a sign of frustration? Why not anger? Why not excess of focus? Once again, while I see that we could connect emotional states to headaches, I find myself baffled as to why we've chosen one -- and only one -- emotion to connect to them.

Poor immune function... anything that goes against our inner peace. That's 'stress'. Okay. I was born with IgA deficiency, which is genetic. It's not caused by emotional stressors unless my blob-of-cells-self was crying in the womb. Wait, probably my mom has it. Maybe it was caused by her emotions, and she passed the results of those toxic emotions to me! This makes sense, if you're Freud.

HOW IS TOXIC A SYMPTOM.

HOW IS CANDIDA ANGER. CANDIDA IS A PATHOGEN WHY.

I cannot.

View attachment 20701

Here we lose grasp not only of logic but grammar leaves the building as well:

"Is life get better for you everyday?" --> "Is life getting better for you every_day?"

If you are ready I will show you the fast and easy way?

....sure. I've been waiting. What is the fast and easy way?

-J

 

[Mohawk1995]

One thing I have learned by living with not only one, but two people in the family with an Invisible illness. No one suffering has time or energy for "platitudes" or "flights of fancy". Life is generally far too painful, raw and messy to spend time on those. It is also richer and any joy we experience is deeper. It is more real. To me a discussion on spirituality or faith should necessarily go to those topics and not a bunch of words on a slide.

 

[Valentijn]

Slide three is a revelation.

She seems to have missed one.

Emotional signs:

• Vomiting = Reading psychobabble

 

[Woolie]

How can we get it through these people's heads that their daft ideas cause us real harm? Makes me just want to scream and swear.

Peddlers of psychobabble, alternative claptrap and spiritual nonsense, please note: We are not your f***ing plaything, to be used to peddle whatever brand of personal belief you are most fond of. We are real people, and every piece of nonsense you write about us hurts us - both psychologically and practically (in terms of public perception that our illness is "reversible").

Would it be okay to rant on about MS or Lupus being a spiritual disorder? No, because that's offensive to the sick, and people would be outraged. But somehow, because we're seen as crazy, we just don't count.

No-one should be allowed to speculate about an illness in print without actually consulting a person who has that illness. Period. That is NOT OKAY.

 

[Chrisb]

Yes, but admit it. They may be right when suggesting an association between candida and frustration and anger.

 

[A.B.]

How can we get it through these people's heads that their daft ideas cause us real harm? Makes me just want to scream and swear.

Appeal to their reason and educate them by referencing the IOM, NIH, etc. and pointing out that the scientific evidence points towards a serious systemic disease, in contrast to the common misconception that it's a lifestyle & stress related disorder that is reversible by modifying behaviour or consulting a therapist.

This sometimes works, but often the person is too invested into this idea. Natural human tendency to not easily change important beliefs.

I don't see this working when there is a conflict of interest. One can then only hope to educate other readers, and also point out the COI.

No-one should be allowed to speculate about an illness in print without actually consulting a person who has that illness. Period. That is NOT OKAY.

Problem is that many of these people claim to have suffered from CFS, and of course, to have recovered thanks to whatever they're selling.

I don't believe that means they didn't suffer from it. I do think it means they didn't suffer from it long enough or severely enough to start questioning the explanation society gave them for their condition.

And of course, whenever there is a spontaneous remission or recovery, a new "I recovered thanks to x" story is born. What is the name for that, survivorship bias?

 

[Woolie]

Problem is that many of these people claim to have suffered from CFS, and of course, to have recovered thanks to whatever they're selling.

I don't believe that means they didn't suffer from it. I do think it means they didn't suffer from it long enough or severely enough to start questioning the explanation society gave them for their condition.

Yea, true. I can feel that candida coming on again.....

What is the name for that, survivorship bias?

Yea, I was just reading about that the other day. You see it everywhere. Where would TED talks be without it? "Keep on with that dream of yours to create a multibillion dollar digital software empire. Look at me, I did and it worked!"

 

[Woolie]

What is the name for that, survivorship bias?

Ha, just thinking. My father and grandfather were both lucky enough not to go to war in WW2 (protected occupations). I guess there be a heck of lot of folks like me out there now, and not so many with less fortunate relatives...

 

[lansbergen]

I don't believe that means they didn't suffer from it. I do think it means they didn't suffer from it long enough or severely enough to start questioning the explanation society gave them for their condition.

Could very well be right.