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Mind/Body

ukxmrv

Senior Member
Messages
4,413
Location
London
I'm not bitter. It's just irrelevant for my health. It was also irrelevant for my friends who died of cancer and HIV/AIDS in that none of these things saved their lives.

What my friends lost was the idea that something could save them. The ones who survived HIV/AIDS knew that they did so because they could get drugs. They saw so many people who didn't and who died.

Really sorry that you don't experience things in the same way Hip. I never had a spiritual sense so no loss there for me.

Music does still move me. Art and all my normal cultural appreciation is still there. I don't think that my "celebral hardware" is damaged in the same way as you. All my abilities to feel deeply in this way are still there.

Hope you are able to feel these things again. Really sympathise. Makes the disease even less easy to bear.
 

Hip

Senior Member
Messages
17,858
Really sorry that you don't experience things in the same way Hip. I never had a spiritual sense so no loss there for me.

Music does still move me. Art and all my normal cultural appreciation is still there. I don't think that my "celebral hardware" is damaged in the same way as you. All my abilities to feel deeply in this way are still there.

Hope you are able to feel these things again. Really sympathise. Makes the disease even less easy to bear.

In my case, as well as ME/CFS, I also suffer from anhedonia (lack of feeling the reward or pleasure in life's ordinary daily activities) and emotional flatness (blunted affect). These are not normally considered part of ME/CFS, though some ME/CFS patients do complain of these symptoms. Anhedonia and emotional flatness are both very common in schizophrenia; and anhedonia often arises as a sub-symptom of depression.

Anhedonia and emotional flatness have a tendency to make all the pursuits that gave meaning and pleasure in your life become flat and feel pointless.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
In my case, as well as ME/CFS, I also suffer from anhedonia (lack of feeling the reward or pleasure in life's ordinary daily activities) and emotional flatness (blunted affect). These are not normally considered part of ME/CFS, though some ME/CFS patients do complain of these symptoms. Anhedonia and emotional flatness are both very common in schizophrenia; and anhedonia often arises as a sub-symptom of depression.

Anhedonia and emotional flatness have a tendency to make all the pursuits that gave meaning and pleasure in your life become flat and feel pointless.

There is also the issue that in severe exhaustion nothing is fun. Thats not anhedonia as far as I am concerned, thats exhaustion. We want to do stuff, when we are not exhausted they are fun, when exhausted they are not fun. I am currently in an (expected) crash, though not currently a severe crash. The things I normally do for fun are not fun right now. However I still want to do things, stil have plans, and still know when I pull out of the crash these things will be fun again.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
As my ME went from mild to moderate my ability to meditate disappeared. I could no longer do so.

I tried to meditate to reduce my ME-related tension, but had to abandon attempts as it just brought on unpleasant feelings of dizziness.

Physical methods have reduced the tension (diet and supplements combined with more stringent pacing).
 

PhoenixDown

Senior Member
Messages
456
Location
UK
As my ME went from mild to moderate my ability to meditate disappeared. I could no longer do so.
I experienced something like this, it was rare that I did any sort of strict meditation, but whatever ability I had was lost, and an opposite state of meditation (a wired, unpeaceful, distractable, pain amplified state) slowly took over me, getting worse over the years (with distinct and indefinite worsening from poor sleep or being exposed to noxious noises without adequate quiet periods).

Problem is because people perceived it as mental rather than physical, no one thought there was any lasting harm done from not letting me sleep or not giving me peace, but of course certain skeptics keep telling us it doesn't matter whether we call it mental or physical since it "doesn't change treatment"™ .

I wonder what it will take to change their mind?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I know it would be understandable for us to feel a little bitter towards the now meaningless subjects and activities that were previously so meaningful in our lives. But I don't actually think that these subjects and activities have been "exposed" or have failed. They are still great cultural gems for humanity, that work well for those with a normal, healthy mind. It's just that we now don't have normal, healthy minds. Therefore this "cultural software" no longer runs on the dysfunctional "cerebral hardware" we have..

Hmm - don't think I agree with this, which maybe illustrates differences in what we think of as 'mind'.

I think that my mind is still normal, i.e. I have normal, rational beliefs, know how to behave with other people, etc. I'm not anhedonic, and am well-motivated with a generally positive mood (as opposed to when I was depressed, and I sympathise greatly for those who are - it is ghastly). My brain, OTOH, is at times dysfunctional in a similar way to my body, e.g. it can only do a limited amount before getting exhausted, and after over-exertion it suffers from PEM.

Maybe I'm disagreeing with myself now, as previously I was agreeing that mind was a function of brain (and body), I think, but I have sinus congestion as well as a bit of 'normal' brain fog at the moment so not able to think clearly. I think my mind is still normal though!

Very frustrating that I can't take in all the points in this thread as they are very interesting.
 

Enid

Senior Member
Messages
3,309
Location
UK
I wish I could say a thousand times - there is nothing wrong with reason, much to do with slow cognition/recognition, often painful hearing, sight(muscular) accommodation - keep going you guys it eases and does improve.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
The older I get living with this disease the less interested I become in theories.

...

Thank you AB and Hip for saying this so well

Yes. And thanks from me as well and to Alex. Very interesting thread. Just reading through in my relaxed state of my mind on the 'couch' :)



Hip, I don't think that ME and CFS distort the mind. I think that our desire to survive focuses the mind. All the other things become a luxury and an irrelevance if they do not help us. They lose their attractiveness when exposed.

Not sure I'd agree entirely with how you've said this but I get the sentiment. We are all 'horses for courses' and if something is felt to help someone else with this diagnosis that I feel doesn't help me - then good for them.

Generally...

I am not into passing judgement but equally I don't like to be preached at - don't suppose any of us do really. As for survival instinct - well I ask myself this every single day. And then I consider all those who have ended their lives and wonder if I am any stronger than they were: whilst knowing that I am probably not.

Survival is organic but something over-rides this organic need to live when people choose to end it all. I was at a mental health conference a while back - years ago I guess - and happened to say or imply to a chap that we were all victims: to which he replied 'No. We are survivors!'

Helps him I guess to think of it this way. Trouble is I still feel a victim. Not helpless entirely and I haven't given up - I am not meekly submitting; but still feel a victim of this crap.

Discussion relating to concepts like the mind are interesting in and of themselves - don't get me wrong - but the paper itself was interesting too. I studied ancient history for four years, so maybe I became more appreciative of the philosophy that influenced medicine and psychiatry.

Just don't ask me now to regurgitate anything specific. It's all 'ancient history' now with me I am afraid. Bottom line for me is that a patient presenting with a broken leg needs the broken leg fixed. How the leg came to be broken can be left for another day or might be irrelevant - but should be considered for obvious reasons.

And that consideration is where the problems can lie. That interpretation of events leading up to and including the main event itself. The question 'Why?' Enter philosophy and psychiatry and - for me - exit stage left.

Shame I can't get full access to that paper as I hadn't come across the hypothesis before and it looks like an interesting read :)
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Survival is organic but something over-rides this organic need to live when people choose to end it all. I was at a mental health conference a while back - years ago I guess - and happened to say or imply to a chap that we were all victims: to which he replied 'No. We are survivors!'

Helps him I guess to think of it this way. Trouble is I still feel a victim. Not helpless entirely and I haven't given up - I am not meekly submitting; but still feel a victim of this crap.

The two are not mutually exclusive. In a literal sense, victims are usually survivors, i.e. they usually survive what they are a victim of. It's very often true in the other sense too, in that being a victim can make you stronger, physically, mentally or both.

I doubt whether having ME has made many of us stronger physically, but I'm sure many of us have gained some mental strength from the battles, and in particular from interactions in places like this. Thank goodness for the internet. I wish I had had places like this to come to when I first became ill. I had to become weaker (culminating in a suicide attempt) before I became stronger.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
The two are not mutually exclusive. In a literal sense, victims are usually survivors, i.e. they usually survive what they are a victim of. It's very often true in the other sense too, in that being a victim can make you stronger, physically, mentally or both.

I doubt whether having ME has made many of us stronger physically, but I'm sure many of us have gained some mental strength from the battles, and in particular from interactions in places like this. Thank goodness for the internet. I wish I had had places like this to come to when I first became ill. I had to become weaker (culminating in a suicide attempt) before I became stronger.

Thanks. Was editing as you posted. I was trying - and clearly failing - to illustrate how we might each see the same thing differently. Now, I see my acknowledgement of 'victim-status' as an equally positive position. It means I don't fight as hard pointlessly - as I had before. I'm not the 'positive-thinking will see me through' kind of chap anymore - not that I really saw myself like that. I'm not endlessly searching for a 'cure' either. Or spending large sums on 'experts'.

My 'Got ME? Live with it' approach I guess. Acceptance. I can't beat it and, no, before you ask lol - I don't embrace the bastard like a friend either :) He has me under his boot but I ain't given up the ghost completely. He's the dominant buggar in this relationship although my good days are equivalent to me punching the buggar on the nose :)

n.b.

This is for illustrative purposes only you understand. I don't really think of my situation as some fat bloke sat on me! I did try to write as if the ME were a woman but the visuals didn't conjure the same image :) :)

Funny mood. Normal service will be resumed tomorrow. Apologies for any interruption to your viewing pleasure :alien:
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Thanks. Was editing as you posted. I was trying - and clearly failing - to illustrate how we might each see the same thing differently. Now, I see my acknowledgement of 'victim-status' as an equally positive position. It means I don't fight as hard pointlessly - as I had before. I'm not the 'positive-thinking will see me through' kind of chap anymore - not that I really saw myself like that. I'm not endlessly searching for a 'cure' either. Or spending large sums on 'experts'.

My 'Got ME? Live with it' approach I guess. Acceptance. I can't beat it and, no, before you ask lol - I don't embrace the bastard like a friend either :) He has me under his boot but I ain't given up the ghost completely. He's the dominant buggar in this relationship although my good days are equivalent to me punching the buggar on the nose :)

n.b.

This is for illustrative purposes only you understand. I don't really think of my situation as some fat bloke sat on me! I did try to write as if the ME were a woman but the visuals didn't conjure the same image :) :)

Funny mood. Normal service will be resumed tomorrow. Apologies for any interruption to your viewing pleasure :alien:

Nothing wrong with being a bit mad sometimes! :) I sometimes say it's only being mad that keeps me sane...

I too was in the mind that you are in with regard to believing that I couldn't beat ME, and was weary of trying this and that only to have no success. But last year, after being ill for 17 years, I finally came across the research that gave me renewed hope, which is the leaky-gut treatment, and it has made a significant difference. I am including some supplements that I tried briefly on their own before. Basically I was tinkering before rather than taking a co-ordinated approach: the right diet, the right supplements, and pacing more rigorously. Even if it doesn't cure me (and who knows...?), it has helped a lot and may produce continuing improvement.

So don't give up hope, but don't beat yourself up either.

I have my own way of dealing with The Bugger (not that it does any good). When I get worsened symptoms despite trying to do everything right, I tell it sternly "I AM NOT HAVING THIS!!!"

It ignores me of course.
 

PhoenixDown

Senior Member
Messages
456
Location
UK
How the leg came to be broken can be left for another day or might be irrelevant - but should be considered for obvious reasons.
That's a bad analogy and here's why. My leg is still being smashed on a daily basis, I can already identify some of the things that are smashing my leg however I need other people to accept that this is going on, so they will help stop or remove some of the things that are continuing to smash my leg. There also seems to be unknown factors smashing my leg (it's getting more broken by the way and soon I won't be able to feed myself or go to the toilet), but no one believes that my leg is even broken at all, let alone believe that it's getting worse. Getting a better diagnosis will mean more credibility, and hopefully society will then help me remove or fix some of the things that continue to smash my leg.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
That's a bad analogy and here's why. My leg is still being smashed on a daily basis, I can already identify some of the things that are smashing my leg however I need other people to accept that this is going on, so they will help stop or remove some of the things that are continuing to smash my leg. There also seems to be unknown factors smashing my leg (it's getting more broken by the way and soon I won't be able to feed myself or go to the toilet), but no one believes that my leg is even broken at all, let alone believe that it's getting worse. Getting a better diagnosis will mean more credibility, and hopefully society will then help me remove or fix some of the things that continue to smash my leg.

Maybe we are still living in the past then, Phoenix. Patient presents with a broken leg. It's visible. Doctor treats broken leg. But doctor doesn't see beyond said broken leg. In Ancient Times - as I was talking about - you'd be lucky to get treated for said broken leg. My analogy - whilst poor - is apt I think.

Today, the 'debate', the problem still concerns what is not visible. That's my problem too. Too many theories, too many opinions as to what could be causing me to break my leg all the time: and not enough people who understand how to fix it. But they are considering the problem at least.

And those considering it come from all angles/all disciplines. But in clinical practice - they only fix what they can see or think they can see. Of course I am not saying it is right or that it is wrong: just the way it is.

Look I'm having a shit day, Phoenix, so if it don't make any sense then I am not surprised. I think we are actually agreeing - I just have a 'funny' way of expressing it :)
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Maybe we are still living in the past then, Phoenix. Patient presents with a broken leg. It's visible. Doctor treats broken leg. But doctor doesn't see beyond said broken leg. In Ancient Times - as I was talking about - you'd be lucky to get treated for said broken leg. My analogy - whilst poor - is apt I think.

Today, the 'debate', the problem still concerns what is not visible. That's my problem too. Too many theories, too many opinions as to what could be causing me to break my leg all the time: and not enough people who understand how to fix it. But they are considering the problem at least.

And those considering it come from all angles/all disciplines. But in clinical practice - they only fix what they can see or think they can see. Of course I am not saying it is right or that it is wrong: just the way it is.

Look I'm having a shit day, Phoenix, so if it don't make any sense then I am not surprised. I think we are actually agreeing - I just have a 'funny' way of expressing it :)

I think PhoenixDown was using your 'broken leg' analogy and taking it further as an analogy for ME. I still have congested sinuses which are fogging my brain so I hope I am being clear! :confused:
 

A.B.

Senior Member
Messages
3,780
You can see that psychiatry uses the word "psyche" in a specific technical sense — a sense which includes mediating the body's responses to the physical environment.

That doesn't change a thing. The mind is still a metaphysical entity in this definition, objectively indistinguishable from other superstitions that today we think of as ridiculous.

It's not different than postulating that diseases for which we cannot find physical causes must certainly be caused by invisible evil spirits living within the body of the patient. Evil spirits which of course can only be driven out by a professional excorcist, who would certainly distinguish between different types of evil spirits and possessions according to behavior, thoughts and symptoms in the patient. The treatment would of course take a long time - evil spirits don't give up easily. When treatment fails, then the possibility that the patient has attracted the evil spirits with his or her own immoral behavior must be considered, etc. etc....
 

Hip

Senior Member
Messages
17,858
A.B. But that is what mind is, a metaphysical entity. Nobody is arguing with that.

Buddhists for example argue that everything is mind, and that the physical world that you think is so objective is in fact just a mental construction within your own mind. Can you prove otherwise? Since all the experience you have of the physical world is only found within your mind, how do you even know that the physical world is real? Buddhists view the physical world as some type of illusion that exists in the mind.

Myself, I don't fully subscribe to the Buddhist view. I think both mind and the physical world both exist, but are different in nature. Or at least I think this perspective works on a practical basis.

What I don't follow is your view that if you assume mind to exist, this automatically means that diseases for which we cannot find a physical cause must be caused by invisible evil spirits. That does not follow. It does not follow because there is no evidence for it. There is no evidence for any somatoform etiology of diseases.

This is why the idea of somatoform diseases will soon crumble and fade into history: because there is no evidence. I agree that the notion of somatoform disorders is akin to a primitive Medieval belief in evil spirits causing illness, and the sooner we remove somatoform disorders from the medical lexicon and from the medical textbooks, the better it will be for all of medicine.

Although there certainly are situations when ours minds can manifest into physical symptoms, such as in the case of shell shock or posttraumatic stress disorder for example.

But it seems to be that you want to throw the concept of mind into the bin for no other reason than your (entirely justified) antipathy towards the concept of somatoform diseases. I agree with your antipathy towards the idea of somatoform diseases, but that is no reason to throw away the concept of mind. That is called throwing the baby out with the bathwater.
 

A.B.

Senior Member
Messages
3,780
A.B. But that is what mind is, a metaphysical entity. Nobody is arguing with that.

Buddhists for example argue that everything is mind, and that the physical world that you think is so objective is in fact just a mental construction within your own mind. Can you prove otherwise?

The context makes all the difference. I'm not averse to philosophy, thought experiments, speculation and so on.

These are not the appropriate answer to illness though. You don't get better by telling yourself that it's going to get better soon, or that thinking differently will cure you. If I've learned anything due to my illness is that concrete help and interventions are needed most (not some fake compassion, or forced positive thinking, or brainwashing). Patients deserve to have their illness taken seriously.
 

Hip

Senior Member
Messages
17,858
A.B. You won't find a stronger critic of the concept of somatoform diseases than myself. When I have the time and energy, I want to write some articles online specifically exposing the fact that somatoform disorders have no evidence base whatsoever. If you look around online, there is very little in the way of good, solid criticism of somatoform disorders, and we need well-reasoned criticism of the somatoform concept, and its failure to gain any traction in terms of scientific proof.

Though we cannot completely discount the idea that some experiences can perturb the mind so severely that physical symptom then manifest out of the perturbed mind, with PTSD being an example of this.

So you still need to keep the "psyche" in psychoneuroimmunology, otherwise you would exclude the study of conditions like PTSD, or stress-related illnesses.

But I do think that the psyche's involvement in disease is rare and limited, and confined to conditions like PTSD. So I agree science needs to look primarily into dysfunctions of the brain and nervous system, not the psyche, when trying to uncover the causes of illnesses with mental and/or cognitive symptoms (illnesses such as ME/CFS, anxiety disorders, clinical depression, anorexia, bipolar, autism, schizophrenia, etc).
 

A.B.

Senior Member
Messages
3,780
A.B. You won't find a stronger critic of the concept of somatoform diseases than myself. When I have the time and energy, I want to write some articles online specifically exposing the fact that somatoform disorders have no evidence base whatsoever. If you look around online, there is very little in the way of good, solid criticism of somatoform disorders, and we need well-reasoned criticism of the somatoform concept, and its failure to gain any traction in terms of scientific proof.

Though we cannot completely discount the idea that some experiences can perturb the mind so severely that physical symptom then manifest out of the perturbed mind, with PTSD being an example of this.

I can't follow you. Stress is not a metaphysical entity, neither is the brain. Stress-brain interactions do not require a metaphysical entity in order to be understood.
 

Hip

Senior Member
Messages
17,858
Depends what you define as a metaphysical entity. Some would say that the number four is a metaphysical entity. You cannot find the number four anywhere in the physical world. You can have objects that possess the quality of "fourness" in the physical world (like four apples in a bowl), but not the pure concept of four.

Similarly, the notion of a perfect circle can be considered a metaphysical entity: you can have imperfect examples of circles in the physical world, but the concept of a perfect circle is itself metaphysical, as no perfect circles exist in the physical world.

Equally, you could consider any software (both in a computer, or in the brain — and by the latter I mean things we learn and store as data structures in the brain) as metaphysical.

These idea date back to Plato, and his theory of forms. Plato posited that there were three worlds: the physical world, the world of forms, and the chora (the world prior to all forms). Plato said that perfect circles could only exist in the world of forms, but never in the physical world. Only imperfect examples of circles can exist in the physical world. Plato said that the fact we can mentally conceive of a perfect circle indicates that our minds have access to the world of forms.

Thus Plato believed our mind has access to both the physical world (via our senses), and to the world of perfect forms. Plato's theory is taken very seriously, even today.


As far as the problems with psychiatry are concerned, I think the computer hardware/software analogy is useful to express the issues here. We can take the physical brain to be the hardware, and the learned information and learned responses we have acquired in life to be the software that runs on our physical brain. So the knowledge of how to ride a bike would be an example of brain software that we have learned, which exists as data stored in our brain.

I think what you are getting at (and I agree with you), is that psychiatry has historically often assumed that the causes of mental and/or cognitive diseases (diseases like ME/CFS, anxiety disorders, clinical depression, anorexia, bipolar, autism, schizophrenia, etc) are to be found in the software of the brain, and therefore, psychiatry has used what it considerers to be corrective measures (like psychotherapy) to fix what it assumes is broken brain software.

But throughout the whole of the 20th century, when psychiatry championed this software approach to mental and/or cognitive ill health, psychiatry never really got to the bottom of these diseases, and never discovered their causes. At best, they achieved some minor improvements in the symptoms.

So what psychiatry needs to do in the 21st century is now focus on the hardware side, focus on the physical brain, and study how dysfunctions in the physical brain cause mental and/or cognitive ill health. The physical side of the equation has for too long been neglected.

I think this is what you are getting at, A.B., and I am in agreement.

I have to say, though, that although I used to love these subjects and their hair-splitting concepts, these days, with ME/CFS, I unfortunately don't really have mental clarity to get into them anymore. (Or should that be: "I don't have the brain clarity"?)