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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What made us ill in the first instance ?

Quilp

Senior Member
Messages
252
PACE is all about rehabilitation, it does nothing to address how or why we became ill in the first place.
This is where it becomes interesting because Wessely, White, Chadler, Sharpe all believe that we are 'trapped' in a cycle of restricting what we would otherwise able to do. They acknowledge an organic trigger, perhaps flu, glandular fever, but that when we get better we restrict ourselves.
I have been a member for over a year, and I see how smart some of you people are, I feel your sense of injustice, your frustrations. Many of you would be earning six figure salary's and then some. I find it utterly astonishing that you, you, and you are in a cycle whereby you deliberately restrict what you are ordinarily able to do, and this on a scale of millions upon millions of people. Wouldn't that be something if we were able to do that, and all before the internet came along. And why would we do such a thing ?
Pure fantasy, but this isn't fiction, this is deception of the highest order.

Kind regards, Mark
 

fla

Senior Member
Messages
234
Location
Montreal, Canada
Are most ME patients like me ie the opposite of a procrastinator? I naturally want to do things now rather than later and I want to do things as well as possible rather than half baked. Pacing does not come naturally to me so the "trapped in a cycle of restricting" theory could not be more wrong in my case.

For example the PACE trial story has peaked my interest and made me read more than usual and caused PEM (massive headaches in my case). If CBT/GET could help me in any way it would be to teach me to slow down, procrastinate more, and don't be a perfectionist because of PEM crashes. Just the opposite of the CBT/GET theory.
 

Marg

Senior Member
Messages
343
Location
Wetumpka Alabama
What made us ill in the firstinstance

You wrote exacrly what I was thiking. I do not like to procrastinate but maybe I should learn. There was a period that I could not do a thing so the world did not end. We jsut want to do good jobs and get things done and that is the way it should be. I always wondered what was the different between going the job right and a so called over achiever.
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Hi Mark. Quick comment. Do you have any friends, family, contacts who you know well who are very successfully deceived by all this? I do, and my knowledge of them leads me to the understanding that while this is indeed a form of deception, we just can't judge who the deceiver is and how conscious that deception is, all the way up and down. It really is mind-boggling to unravel, but my personal experiences with my family help me to understand that an incredible level of self-deception is possible based on a tiny and innocent-sounding false premise and a lifetime of confirmation bias. It's important to be aware that we really don't know what the origin of the deception is. There are Russian Dolls in this situation all the way up to the top and beyond. For example, it's entirely possible to analyse what you're saying and say that Freud/Fraud successfully deceived everyone, and everyone since then has fallen for that deception. For more religious-minded types, you might locate the deception with the devil himself, whispering in Wessely's ear. For those into ET it could be an alien deception of humanity...the truth is that we really don't know where the buck stops. I think that's really important to bear in mind when dealing with individuals, because on a small personal scale I can easily call my own brother and sister members of the neo-nazi conspiracy to supress ME if I take it all too far and worry about why they just won't listen...but I know that the truth is that they have just been very successfully deceived by other people who have been successfully deceived by other people who have been successfully deceived by an idea...I think, personally, that when it comes down to it the best tack is to identify the root, the idea, and blame the idea...
 

Merry

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
Hi Mark. Quick comment. Do you have any friends, family, contacts who you know well who are very successfully deceived by all this? I do, and my knowledge of them leads me to the understanding that while this is indeed a form of deception, we just can't judge who the deceiver is and how conscious that deception is, all the way up and down. It really is mind-boggling to unravel, but my personal experiences with my family help me to understand that an incredible level of self-deception is possible based on a tiny and innocent-sounding false premise and a lifetime of confirmation bias. It's important to be aware that we really don't know what the origin of the deception is. There are Russian Dolls in this situation all the way up to the top and beyond. For example, it's entirely possible to analyse what you're saying and say that Freud/Fraud successfully deceived everyone, and everyone since then has fallen for that deception. For more religious-minded types, you might locate the deception with the devil himself, whispering in Wessely's ear. For those into ET it could be an alien deception of humanity...the truth is that we really don't know where the buck stops. I think that's really important to bear in mind when dealing with individuals, because on a small personal scale I can easily call my own brother and sister members of the neo-nazi conspiracy to supress ME if I take it all too far and worry about why they just won't listen...but I know that the truth is that they have just been very successfully deceived by other people who have been successfully deceived by other people who have been successfully deceived by an idea...I think, personally, that when it comes down to it the best tack is to identify the root, the idea, and blame the idea...

Absolutely, Mark.

Through my years of illness I've been astonished time and again at the capacity of others for self-delusion - self-deception, as you say - this denial of illness or a denial of its seriousness. And I've come to see, also, that some human beings have little or no capacity for feeling empathy.
 

Enid

Senior Member
Messages
3,309
Location
UK
Hi Quilp, I must admit to not reading anything Wessely Sharpe White Chalder have to say anymore, they are so far off the mark and with increasing research findings - to put it bluntly irrelevant now. The PACE trial was flawed and simply confirms their ignorance about the illness ME we know.
 

SOC

Senior Member
Messages
7,849
Absolutely, Mark.

Through my years of illness I've been astonished time and again at the capacity of others for self-delusion - self-deception, as you say - this denial of illness or a denial of its seriousness. And I've come to see, also, that some human beings have little or no capacity for feeling empathy.

There are many people without empathy, I'm afraid, but I think there's an equally large (or larger) player -- FEAR. If it can happen to us, it can happen to them. They can't mentally pigeon-hole us like they did HIV/AIDS patients and claim they're not "like that" so it can't happen to them. :rolleyes:

We ARE them. A normal cross-section of humanity. They have no mental protection from the fear that they may be next. So it can't be a real illness. It has to be something they could control (even if we can't :rolleyes:) -- mental disturbance, laziness, character weakness.

The older I get, the more I realize how much the vast majority of the population is controlled by their own fear.
 

PNR2008

Senior Member
Messages
613
Location
OH USA
:In bed:I am and have been in bed for 10 days, writhing in pain (my usual pain meds are just marginally helping) and I feel faint after I'm already up. The fatigue is making me breathless and I'm taking less pain meds so the exhaustion isn't worsened by them. I'm eating salty foods, drinking plenty of liquids and keeping my painful legs above my heart. This scenario has happened before but never this long with little improvement. Why am I suffering so much? Because I crossed the line, the activity line. You know the one that keeps changing.:confused: In this case I walked my dog over a few days after getting over a broken ankle and PT. I was encouraged to exercise and even though I scrutinized every energy output I still got caught 1-2 days later for 10+ days. Nobody is going to tell me graduated exercise helps it makes me sick even if it feels good at the time doing it. In fact that's why I exercise for the feeling of well-being it produces at the time only to crash later and become bedridden for days or weeks. I'm not afraid of moving (went canopy zipping on my 59th birthday knowing full well the payment would be costly) I'm afraid of the later result. Also if I walk 3-4 times a week my muscles don't hurt less after time they hurt more until I'm housebound and bedridden. To illustrate my committment to moving for joy without moving too much, I've trained my German Shepherd , attached by short leash to bicycle's back axel to run along side me which she loves but look closer and notice my pedals aren't moving half the time because she's pulling me!!!!! Fear of exercise, I think not, fear of pain and devastating weakness, definitely.:thumbsup:
 

dannybex

Senior Member
Messages
3,565
Location
Seattle
There are many people without empathy, I'm afraid, but I think there's an equally large (or larger) player -- FEAR. If it can happen to us, it can happen to them.

Exactly. That's precisely what someone told me a year or two back when I asked him why so many don't believe CFS/ME exists, and/or why they kind of disappear from patients lives and/or don't want to talk about it if they're around. Deep down, deeeeeeeep down, they're afraid they could possible get it too, and that terrifies them.
 
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