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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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The Abundant Energy Summit

whodathunkit

Senior Member
Messages
1,160
I do notice some perfectionist traits in myself, but these first appeared a few years before the illness. Blaming the illness of perfectionism is the fallacy of confounding correlation with causation. I have wondered whether "perfectionism", that is being preoccupied with doing things well, isn't the result of the person finding it increasingly difficult to do things as well as they were able to before.
I don't see it as much of a "blaming" situation as it is just looking for some of the other causes that could be bound up with this. I have been an almost impossible perfectionist my whole life (and usually falling far short of my self-imposed standards), and find it quite mentally exhausting while at the same time it's a trait I've been pretty proud of. Not taking a half-assed approach towards life's tasks (until sadly forced by physical circumstances, anyway) is IMO entirely admirable. However, I'm also pretty open to the idea that perfectionism and perhaps an excessive concern with detail could have helped "pre-exhaust" me before I got truly deep into my worst symptoms. IMO it doesn't make my physical symptoms my fault, regardless, for the simple fact that many people with the same personality traits that live the same kind of lifestyle I did don't wind with the same problems I've had. Something else that is out of my control is obviously at work.

Also, I don't quite see how the leap can be made that assigning a common personality trait to people suffering from ME/CFS implies that people can and should "cure" themselves simply by changing the way they act or think. Even if some idiots do think that (does Myhill, really?), who cares? They're WRONG. It's helfpul to take a look at and maybe try to change counter-productive behaviors, just because the less stress you have the better your physical body functions, regardless of whether or not you're sick, but anyone who actually believes changing behavior can affect a cure for ME/CFS should NOT be taken seriously and is therefore not worth any more thought. My take on blame is that the word typically implies an assignment by the blamer as well as an acceptance by the blamee. But it's really hard for someone to blame you for something when you truly don't give a flying crap what they think.

But while we're at it, I hafta wonder why assigning a non-physical trait like above average intelligence to ME/CFS sufferers is pretty much something that everyone likes to hear (I've read about that a time or two on PR), but when it's something like perfectionism or some other trait that might be perceived as negative, there's a pretty much universal disavowal and it turns out that such speculation is victim blaming.

I'm just thinking out loud here. I'm sure some will be offended by this, but that's not my intent. Really. It just seems a double-standard I've noticed before and I'm pointing it out just for purposes of discussion. I know there is actually quite a lot of patient blaming in the medical profession, and that ME/CFS people seem to get an unduly large share of it.

Sometimes it takes years before patients realize what is happening, especially when they have a milder form of ME. As your average doctor won't see the subtle signs (although in hindsight they were usually always present) and explain to you that your health is declining,
This was me. My own doctor had me tagged as a "non-responder" (which I found a little bit demeaning and discouraging, but I blew it off b/c she's a great doc who really does want to help people) until I lighted here and began experimenting with Freddd's protocol. She was truly surprised at my progress last year when I presented her with my experience. Then I went to her last week for my annual, and come to find out she's now prescribing injections of methylB12, methylfolate, carnitine, etc. :D

After being on PR and learning about the symptoms I think it's quite possible I could have gotten a diagnosis if I'd pursued it. But I didn't discuss all the symptoms I had with my doc because I just thought they were part of the general decline and I was cursed to be one of those people who ultimately didn't age well. I didn't even know some of the symptoms I had were actually quantifiable problems with names (like severe PEM).

Anyway, my personal feeling is that perhaps the genetics that predispose people with ME/CFS (or a preponderance of those symptoms) to higher intelligence and MAYBE a bit of perfectionism or some other common personality trait, etc., also have something to do with physiology and whether or not the symptoms of the syndrome manifest. But we don't know enough about genes yet to figure out the connections. Then if someone with these genetics gets infected with the wrong virus or parasite (most of which are probably unknown at this time), it's like a triple whammy, and you wind up with a very sick person with a very complex constellation of symptoms with no verifiable cause, that is very difficult to properly address.

I dunno. Again, just thinking out loud.

it's true that ken wilber flatlined and was very nearly dead at one point in 2006 due to ME, but he didn't stay dead ;)
Thanks, mango! Looking back, I suspect that's what I remember hearing, but didn't know he pulled through. I assumed he'd passed. I must've quit looking for new stuff from him because of that. Good to know he's still kicking, and apparently much healthier! :)

I have not accessed the material but looking at the webpage I am afraid any lab that sponsors this sort of thing is likely to sink further in my estimation. I find it difficult to see how a lab can maintain credibility as a reliable diagnostic service and at the same time sponsor stuff like this.
That's actually a pretty good endorsement, IMO. :D
 
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whodathunkit

Senior Member
Messages
1,160
Isn't it fair to say that everybody has some degree of perfectionism?
What I've noticed is that with most people, "good enough", is good enough with just about everything. IME (In My Experience, not In ME) the only people who think everyone is a perfectionist *are* the perfectionsts. This is because we don't understand that everyone doesn't look at stuff the way we do.

Also noticed that most people are perfectionists about a very few things. When the problems arise is when you're that way "globally" (as was I, YMMV).

Seriously. IME perfectionism can be a form of "mental myopia". The fact that most others generally don't share my zeal for it was a very hard thing for me to recognize and accept. It has caused me no end of grief in my employment.
 
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Seven7

Seven
Messages
3,444
Location
USA
Do not dismiss all of it, I have learn very valiable explanations in lay terms of why some things work and why others don't work, CoQ10, b12 .....

In this summits there is good info, you have to ignore some but you find some very good stuff.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I guess they would say that they are trying to inform patients of what types of testing is available if one is suffering with an unexplained illness but I have to say I did wonder who validated all the tests they offered. I can see that this could be a real problem.

Pam

I guess a lab has a justification for telling patients what tests there are if they are asked. But if the lab sponsors its own telling of patients its called advertising. And sponsoring a lot of other multibabble does not look good if you are claiming to provide a reliable testing service! It is intriguing that nobody in the UK would expect to be able to do both at once and get away with it, but in some places it seems to be different.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Isn't it fair to say that everybody has some degree of perfectionism? As long as it doesn't lead towards self-destructive behaviors or poor relationships with family or colleagues I don't see why it is frowned upon so much. I wouldn't see those sort of traits as negative. In a way it can be a positive trait because it means you'll go above and beyond to make sure something is correct and done properly.

There's a lot of job careers that being a perfectionist is almost a mandatory trait. These industries leave absolutely no room for error and the learning curve for entry level is intense but that is the new global standard. The whole world now is about dotting i's and crossing t's so basically no matter where you work you need some level of a perfectionist attitude. I dunno is that a fair statement? Interested to hear what others might say?
1)air-traffic controllers
2)pilots
3)laboratory technicians
4)validation/quality control
5)lawyers
6)accountants
7)programmers
8)biotechnology

Looks a fair statement to me. Interesting, and correct, that you did not put doctors in the list. I can think of some on the list that might be a bit wide of the mark at times too but air-traffic controllers and pilots certainly qualify. I remember a pilot friend pointing out that he had to get 100% on a revalidation exam every 6 months whereas doctors needn't bother with that (they do a bit now).

But it might be interesting to know the jobs PWME were doing when they got ill. There are studies of socioeconomic class, which are conflicting, but I am not aware of specific jobs. Has anyone seen anything like that? It could be possible that PWME tend to have a 'control freak' hypothalamus that is sensitive to crashing after infection. I am not saying I think it is at all likely but it would be reasonable science to try to get evidence for/against that.
 

Effi

Senior Member
Messages
1,496
Location
Europe
The whole world now is about dotting i's and crossing t's so basically no matter where you work you need some level of a perfectionist attitude.
I think there's a double interpretation of perfectionism. On the one hand you have perfectionism as in 'giving it your best and making sure the end result complies with certain quality standards'. Or dotting i's and crossing t's, as @redaxe says. This IMO is a positive thing. Without this, the world would be a pretty messy place.

On the other hand there is perfectionism as in 'however hard I try, it will never be good enough'. The outside world will see everything this person executes as more than perfect, but the perfectionist only sees flaws. IMO it is this interpretation that is meant when they talk about the link between being a perfectionist and developing me/cfs/fibro. Maybe there could be some scientific ground to this, i.e. some kind of chronic overload with people who constantly worry about not meeting impossibly high standards. But what they do is turn things around, saying: if you have ME, you must be a perfectionist, so if you stop being a perfectionist, you will be cured. That makes no sense at all.

Also, I don't quite see how the leap can be made that assigning a common personality trait to people suffering from ME/CFS implies that people can and should "cure" themselves simply by changing the way they act or think. Even if some idiots do think that (does Myhill, really?), who cares? They're WRONG. It's helfpul to take a look at and maybe try to change counter-productive behaviors, just because the less stress you have the better your physical body functions, regardless of whether or not you're sick, but anyone who actually believes changing behavior can affect a cure for ME/CFS should NOT be taken seriously and is therefore not worth any more thought.
I agree that we shouldn't take them seriously. And most of us don't. Even if they keep telling me I'm too this or too that and I brought it upon myself, I know it's not true. But the problem is that they do convince others that their crazy theories are true: other doctors, governments deciding which biomed research to fund, insurance companies deciding if you get paid or not, family and friends who might not support you because 'you brought it upon yourself', ... And that way what could be 'just' a crazy theory becomes a constant nuisance to patients, and sometimes even a direct danger to their wellbeing.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Yes, of course ultimately it's about selling, but that's what the capitalist world is about isn't it including in the world of health? In America all of health care is paid for isn't it?

Yes, exploitation is what capitalism is all about, and the Wall Street crowd are now dominating most aspects of healthcare, which is why doctors only get seven minutes per patient and most personal bankruptcies in the US involve medical debt.

Besides that, I strongly object to being told that mind magic and avoiding family drama will cure a severe chronic illness. It's an insult to me as an ME patient to conflate "fatigue" with ME - this is exactly what CDC has been doing for thirty freakin years, and here are these bozos claiming to be an "alternative" to the party line while actually promoting it!

If they want to peddle woo-woo to frazzled overworked folks who are barely hanging on, that's hardly better - they are still blaming people for being born into a society that uses people up and throws them away because they are now Useless Eaters. If they really want to help people they could do some real science (like Lenny Jason) or do some real politics, as in, how do we build a society based on cooperation instead of exploitation?
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Looks a fair statement to me. Interesting, and correct, that you did not put doctors in the list. I can think of some on the list that might be a bit wide of the mark at times too but air-traffic controllers and pilots certainly qualify. I remember a pilot friend pointing out that he had to get 100% on a revalidation exam every 6 months whereas doctors needn't bother with that (they do a bit now).

But it might be interesting to know the jobs PWME were doing when they got ill. There are studies of socioeconomic class, which are conflicting, but I am not aware of specific jobs. Has anyone seen anything like that? It could be possible that PWME tend to have a 'control freak' hypothalamus that is sensitive to crashing after infection. I am not saying I think it is at all likely but it would be reasonable science to try to get evidence for/against that.

I'm pretty sure I've seen several psychobabble papers (but can't recall the refs) talking about a history of 'perfectionism' in PWME. Interesting concept perfectionism. Rather than a 'personality trait'/maladaptive thinking It suggests to me the inability to screen out comparatively minor noxious stimuli - a little like neuropathic pain don't you think?
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
The psychoquackers can't have it both ways. First I have to eliminate all the negative character traits and thought patterns that are causing my ME. If my ME continues, it's because I haven't done the elimination or made the necessary changes well enough yet. If, despite my best efforts, my ME never improves with the psychobabble approach, it's always because I have somehow fallen short of making the necessary changes, erm, perfectly.

If I ever do make all the changes and eliminations and adaptions perfectly enough to guarantee that my ME will be cured, I will have now become a perfectionist, which causes ME. Damn, just when I was about to get better.

Psychoquackers demand perfection from patients, perfect acceptance, perfect obedience, perfect effort. The fact that we fail to reach their impossibly high standards of compliance is why we are still ill. They demand perfectionism, then damn us for it in the same breath.
 

whodathunkit

Senior Member
Messages
1,160
Rather than a 'personality trait'/maladaptive thinking It suggests to me the inability to screen out comparatively minor noxious stimuli - a little like neuropathic pain don't you think?
Yes, absolutely. May be a genetic component to that. Which could, possibly, also impose some sort of other physiological "preconditions" that dispose people towards certain illnesses (like ME/CFS or what have you).

But the problem is that they do convince others that their crazy theories are true: other doctors, governments deciding which biomed research to fund, insurance companies deciding if you get paid or not, family and friends who might not support you because 'you brought it upon yourself', ... And that way what could be 'just' a crazy theory becomes a constant nuisance to patients, and sometimes even a direct danger to their wellbeing.
Sadly, so true. I hope you don't think I'm arguing otherwise. It's a hard call because that mindset of you bring it on yourself is truly pernicious...but dismissing an idea that might help (note I did not say cure, I said help) some people because it's being perverted by entrenched interests isn't terribly productive, either.

The outside world will see everything this person executes as more than perfect, but the perfectionist only sees flaws.
That's me. Letting go of as much of that as I've been able to so far (still a ways to go) has been one of the greatest gifts I've ever managed to give myself. Quite a bit of relief from chronic stress involved in that. Perhaps coincidentally, perhaps not, working through some unproductive mindsets has been a big part of my journey the couple of years on PR.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I always wonder just what "alternative medicine" is supposed to mean. My family nurse practitioner admits she knows little about supplements. Does that mean supplements are "alternative", even though they can be researched and found to be useful or useless?

Or is a treatment "alternative" because it is based on a muddled theory that can't be tested, or hasn't been tested, like some of this event?

I reject the term 'alternative' in relation to medicine. Alternative to what?

Either it is logical and/or feasible or it is irrational. It may be natural, surgical or pharmaceutical.

I can't myself at properly at present as I have migraine and aphasia. I will change back tomorrow.

EDIT - boy - my words sure were muddled yesterday. "I can't express myself properly" and "I will check back tomorrow."
 
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whodathunkit

Senior Member
Messages
1,160
I reject the term 'alternative' in relation to medicine. Alternative to what?
Alternative to the current dominant paradigm of using only patentable pharmaceutical medications and surgery to effect healing.

Also alternative to the medical culture that values "quantifiable" lab results over symptoms. If your lab results are at the extreme end of normal but still within the normal range, you are not sick, even though you are manifesting all symptoms of an illness. Surely we've all been zapped at one time or another by that mindset...?
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
ugh. the perfectionism thing.

beyond the fact that there doesn't seem to be any solid science actually pointing to that, even if someone were able to produce some what good would it do practically?
If it is an inborn trait there is nothing to be done about that.
If it is behavioural we are back to victim-blaming, and again, if it "caused" the illness (dubious) what good does that do us without a time machine?

Not to mention we are back to goldilocks territory with all this perfectionism talk. Either your illness was caused be trying to hard or not trying enough depending on which psychobabbler you ask. its a one size fits all solution.

Not to mention, much like socio-economic status / income / IQ, when the majority of patients are undiagnosed it makes perfect sense that the ones who ARE diagnosed (and make it into studies) are going to be the ones with the resources and wherewithal to push for a diagnosis. until there is a defiinitive diagnostic test pinning down what "type" of person gets ME is nonsense.

It could be possible that PWME tend to have a 'control freak' hypothalamus that is sensitive to crashing after infection. I am not saying I think it is at all likely but it would be reasonable science to try to get evidence for/against that.
Please no. we already have a ridiculous amount of "research" about "behaviour" in people with ME. If research budgets were in the billions instead of millions that might be less of a problem. The Psychs have had a monopoly on the money for 20 years without producing anything useful.
 

whodathunkit

Senior Member
Messages
1,160
What I'm seeing in this thread is a lot of absolute language like "cause" and "cure". "Experts" bandying those words about in reference to behavioral therapy for ME/CFS patients should be shunned and constantly challenged. Maybe stoned.

If they're using less absolute language like "predispose" and "help", maybe an open mind wouldn't be such a bad thing.

What language are the people in the conference using?
 
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Effi

Senior Member
Messages
1,496
Location
Europe
I hope you don't think I'm arguing otherwise.
not in the slightest :)
but dismissing an idea that might help (note I did not say cure, I said help) some people because it's being perverted by entrenched interests isn't terribly productive, either.
I agree. Anything that helps relieve someones every day health situation is awesome. We're all different, so different things will work for each of us. Working through unproductive mindsets could absolutely be helpful to anyone, sick or healthy. I'm just so sick and tired of certain doctors belittlingly telling me at very first glance they know me better than I know myself, without listening to a single word I say, not caring about all the things that I have already done to get relief in my dire situation. Smirkingly repeating the same old baseless babble, like a broken record of a song you never even liked in the first place.
 

whodathunkit

Senior Member
Messages
1,160
Working through unproductive mindsets could absolutely be helpful to anyone, sick or healthy.
All's I was trying to say. :)

I'm just so sick and tired of certain doctors belittlingly telling me at very first glance they know me better than I know myself, without listening to a single word I say, not caring about all the things that I have already done to get relief in my dire situation. Smirkingly repeating the same old baseless babble, like a broken record of a song you never even liked in the first place.
Totally agreed. :love:

What I really hate is the "Well, you've done this a few times before but you've never done it with *me*" attitude, as if somehow the magical, precious touch of a new professional will change the Universe so the therapy works. :rolleyes:
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
So, are you ready to receive the wisdom of Ken Wilber and discover the true root causes of fatigue? :D
A little background here. Ken Wilber was part of the Lake Tahoe cohort--he was there with his wife relaxing after her chemotherapy. She died, he got ME/CFS. He is a smart cookie, though since his near death from 12 grand mal seizures a few years ago, to me, he seems to have lost a bit of his edge--we know how that works. He was trained in biochemistry and completed his Ph.D. in it except for the dissertation. At that point he discovered that his passion was philosophy.
Didn't he die...?:
Nearly, but not quite.
But after checking, turns out he has RNase Enzyme Deficiency Disease. He says the disease "is thought to be either fully or partially responsible for a host of illnesses,
He wrote that about 2002. His thinking has changed since then.

I haven't looked at this conference myself, but just wanted to give some background on Ken Wilber who has succeeded in writing about 20 very impressive books, mostly while lying on bed pecking on a laptop, in between bouts of feeling dreadfully ill. He has often said that it was lucky that his passion only required his brain, not his body.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I reject the term 'alternative' in relation to medicine. Alternative to what?

Either it is logical and/or feasible or it is irrational. It may be natural, surgical or pharmaceutical.

I can't myself at properly at present as I have migraine and aphasia. I will change back tomorrow.

Alternative medicine is an alternative to medicine. If an alternative treatment can be shown to be effective in scientific trials and the mechanism by which it works is understood, it becomes part of medicine. Using willow bark to alleviate headaches was alternative medicine, aspirin is now medicine.

Many alternative treatments are stuck in that category because they have consistently failed to show any medical benefits whatsoever. When drinking water or channelling energy can be shown in double-blind randomised tests to have any benefits at all apart from the pleasant feelings of quenching thirst or lying down and being pampered, then homeopathy and reiki would rightly become part of medicine. Until then they are alternative, or complementary, or whatever.
 

worldbackwards

Senior Member
Messages
2,051
I was just wondering, Myhill wouldn't be the first doctor to start out totally promising and helpful but then gradually roll over to the BPS camp. What do you guys think is the appeal?
Perhaps it's just easier to blame the patients when the treatment programme you propagate with evangelical zeal doesn't work very well. Better than guilt, I suspect.
 

worldbackwards

Senior Member
Messages
2,051
Isn't it fair to say that everybody has some degree of perfectionism? As long as it doesn't lead towards self-destructive behaviors or poor relationships with family or colleagues I don't see why it is frowned upon so much. I wouldn't see those sort of traits as negative. In a way it can be a positive trait because it means you'll go above and beyond to make sure something is correct and done properly.

There's a lot of job careers that being a perfectionist is almost a mandatory trait. These industries leave absolutely no room for error and the learning curve for entry level is intense but that is the new global standard. The whole world now is about dotting i's and crossing t's so basically no matter where you work you need some level of a perfectionist attitude. I dunno is that a fair statement? Interested to hear what others might say?
1)air-traffic controllers
2)pilots
3)laboratory technicians
4)validation/quality control
5)lawyers
6)accountants
7)programmers
8)biotechnology
I want to meet the psychiatrist who tells ATCs "well, you've just got to let these things slide..."