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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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Please post here if you're a medic who thinks CFS is primarily psychological!

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JPV

ɹǝqɯǝɯ ɹoıuǝs
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858
Esther-

I think you enjoy riling people up with specious arguments. You will write very intelligent things and in the next breath state something totally illogical or ostensibly 'ignorant', of which you couldn't plausibly be ignorant.

Hmmm... maybe he/she/it/them IS a Medical Mafia mole after all.
 
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13,774
I think you enjoy riling people up with specious arguments. You will write very intelligent things and in the next breath state something totally illogical or ostensibly 'ignorant', of which you couldn't plausibly be ignorant. ME/CFIDS is a physical disease, this has been proven beyond cavil. It is often co-morbid with depression and anxiety, just like other serious diseases. I am open to anxiety being a risk factor/minor cause and exaccerbator of the disease.

I think that the reason you think I just enjoy riling people up is that you believe it has been proven that CFS is a primarily physical disease. I think CFS probably is caused by physical rather than psychological problems but am really surprised so many people here think that this has been proven. It still seems uncertain to me. Those who view CFS as a primarily psychological condition are not just being dismissed as if they were homeopaths or psychics, but enjoy quite widespread respect and support. Their ideas are not widely thought to have been proven wrong.
 

MEKoan

Senior Member
Messages
2,630
Esther,

You truly do say the most remarkable things! I am left mute with amazement at many of the statements you make. Should you actually buy what you are putting out, there is no point in saying anything except to point you towards decades of research and politics. If you don't really buy it, I am equally stymied as to how to respond to you.

Truly, it's stunning!
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Blah, blah, blah, blah, blah...

I agree with JPV. One thing I have learned from my short time on forums is that there are always people that are only there for debate and arguments. It is really a waste of our precious energy. Moving on.
 

Frickly

Senior Member
Messages
1,049
Location
Texas
It's a dicey subject. After I started Gupta's program, which honestly I do not do regularly (I do other things much more) I started looking at how my activities and mind and emotions and everything affected me. I basically started observing myself and I came to the conclusion that EVERYTHING affects me! It like my system has been revved up for so long that I'm like a bundle of live nerves - they just twitch away at anything. For some reason physical activity is the greatest stressor of all but negative thoughts and negative emotions - about anything not just my body - put my body into an uproar. It wasn't until I turned my physical activity way down and achieved a little bit of relaxation and feeling of well-being that I was able to see how exquisitely sensitive my system was. Before my body was just in pain all the time. One I got it out of that zone I was able to see it more clearly.

I just wanted to add that this is also my experience. We have to remember that physical activity is not the only thing that takes energy. Our emotions can play a big part. To put it bluntly, our nervous systems are screwed up. This works for Cort and others and I think we should support each other. In my opinion.....If we can find a cause and a treatment we will not have any need for Gupta, CBT, ect.
 
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13,774
Should you actually buy what you are putting out, there is no point in saying anything except to point you towards decades of research and politics.

That does seem to be the only response people have: "There's proof in there somewhere - I'm sure of it."

Wouldn't it be useful for those who think it has been proven that CFS is a physical disease to have a more compelling argument ready to deploy? If all we have is a reference to 'years of research and politics' I really think it would be best to be more modest in our claims about our understanding of the nature of CFS. If there is clear proof that CFS is a physical condition, it doesn't seem to be widely known about.
 
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13,774
There's no proof yet that XMRV causes CFS, but there is ample proof there is a physiological cause. That's why the name was changed in the 90s to Chronic Fatigue Immune Dysfunction Syndrome - because they found evidence of immune dysfunction.

It is widely known in the CFS community.

It is widely ignored.

That's why folks can't believe you believe what you're saying. With all due respect to your right to say whatever you want whether you believe it or not.

We can't say "The proof that CFS is a primarily physical disease is that some people now call it CFIDS." This evidence of immune dysfunction doesn't seem to be consistent enough to allow a diagnostic test - and it's possible that psychological and behavioural abnormalities could result in some immune system changes. I don't think the evidence is as clear cut as you believe.
 

Sing

Senior Member
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1,782
Location
New England
Thinking vs Feeling

I read a page or two then skimmed the rest and would like to comment:

Esther12,

I've appreciated a lot of your posts and feel you bring a useful point of view, often, but a couple of times you've gotten involved in negative wrangles here. I used to study Jungian psychology and one of his ideas was about the opposition of thinking and feeling--that those for whom thinking is a dominant, superior mental function often have a more unconscious, less skilled and related feeling function.

Please forgive me for analyzing, but I see you as having a very adept thinking function with a more unconscious feeling function. Sometimes, as in this thread, your thinking runs with the ball, leaving behind your potential awareness of the feeling aspects of the situation. However when your posts show an awareness and integration between the two, I've really liked your contributions. My guess is that the most important discussion that needs to take place here is between thinking and feeling, rather than between the psychiatric contingent and patients' crew or between physical science and psychology.

See how you've ranged yourself on one side with the "sword of reason", thinking abstractly, etc., while on the other side are a number of people here who are emotionally upset trying to point out the realities you don't seem to be taking account of.

So, from my point of view there are indeed two sides which ought to be communicating but they are the aspects of reality which thinking attends to and those which feeling conveys. Considering these multiple aspects of reality in a more integrated way would be more successful as communications.

And for the rest of us, I feel that some members here have been rude to Esther12. I do not want us to be rude to each other, and try to drive each other away!

We need each other's different contributions and skills as we make our way forward. Why? Because we have been creating a particular culture, a society which accepts our realities, supporting and respecting ourselves. We have lacked this, as yet, in the dominant society and culture, but are aiming towards it as strongly and well as we can.

I hope that we call all return to better manners with each other, or else to abstain from engagement.

Thank you,

Sing
 

max

Senior Member
Messages
192
....Esther12...

I am almost embarrassed that I have wasted my time and energy reading your comments - it really is a joke - a sick one. Just what is your agenda here?

My wife has this wretched illness and suffers 24/7, every time I read your comments I feel you are insulting her - the same way I feel insulted by the psychiatric school - surely you got the message that your original suggestion was not welcomed after the first 20 or so replies and yet you continue - why?

If you rate the psychiatric torture method then go and indulge yourself and come back and let us know how you feel. - but please, drop it - enough is enough.
 
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13,774
Please forgive me for analyzing, but I see you as having a very adept thinking function with a more unconscious feeling function. Sometimes, as in this thread, your thinking runs with the ball, leaving behind your potential awareness of the feeling aspects of the situation.

Analyse away! I compeletely understand why you would think this.

I have tried to be sensetive to people's feelings, and a number of times have added provisos as a sop to the likely emotional reactions of others - but I really don't want that to lead to any sort of self-censorship on my part, or to the belief that I should not present certain points just because others might prefer not to read them. This is an obviously difficult topic for all of us affected by CFS, but if we want to try to develop an honest understanding of the way CFS is viewed and understood by others, and what the available evidence shows, I think we do need to be quite hard and uncompromising in our analysis. I certainly understand why some people would prefer to avoid this, and not read my posts or click on this thread (I got the impression some people hoped I would be insulted by their public joy at the realisation they could add me to 'ignore' - not at all. Feel free.)

I think that there often is a trade off between intellectual honesty and emotional sensetivity. I've tried to be sensetive to others here in a way that does not restrict the range of discussion, but I know that others would want more.

Max thinks that I'm insulting his wife and promoting psychiatric torture methods - when I've said nothing of the sort. With such a highly charged emotional topic the only way I could have avoided insulting anyone is by not saying anything that remotely contravenes the dominant beliefs here, and I'm just not able to be that passive.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
....Esther12...

I am almost embarrassed that I have wasted my time and energy reading your comments

You're not the only one. It's like watching a slow motion train-wreck.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
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858
dear-god-make-it-stop.jpg
 
K

_Kim_

Guest

Are we all that bored that this thread has gotten over 2,500 views?

A straightforward request to those that oppose this thread:

STOP POSTING

It can end here and now, but only if we all stop posting.

Restrain yourself.

The end.
 
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5,238
Location
Sofa, UK
A modest and hopefully constructive proposal

I'm very sorry Kim, but personally, I don't want the thread to die just yet. There is an element of what Esther12 is trying to say that I want to end up going somewhere productive. But you are quite right to point out that anyone who doesn't want the thread to continue would do well to ignore it.

This thread has actually been very helpful - to me, at least. It has been illuminating on many levels. It has helped me to understand the depth of feeling in situations like this, and it has changed my views about quite a few things. I am now a lot more understanding of why most people do not respond to situations like ours in the way Esther and I want to, and I can see that there's no point in trying to force them to. The way Esther and I think about things is an extremely unusual one, I think, and whether it is fantastically brave or merely completely foolhardy, after all my years, I can still never quite be sure. But I do know from my own experience that our position is almost never understood, and though I'm disappointed by that, I no longer expect other people to see things the same way.

I think Sing's post a little earlier was absolutely fantastic. One of the best posts I've ever read, for its intelligence and sensitivity. For myself, I accept that analysis 100%. Only problem is, it still doesn't change my unusual personality! But it is accurate in respect of myself, and it is the post of a true peacemaker.

What has disappointed me about this thread is that nobody has attempted to resolve the impasse by seeking to develop the proposal into any kind of a 'third way' or compromise solution, or to seek to develop common ground. Only Cort, as far as I can see, has contributed positively in this respect. So for now, I will restrict myself to presenting my own modest proposal, and if nobody is remotely interested in that either, I really will give up on promoting all these kinds of ideas here, and look for another place to achieve what I want in those areas. If this place is about something else, then so be it.

Here's my proposal. I desperately want to know the psychologists' answers to the questions Cort posed. I think their jobs give them a clear moral responsibility - and perhaps in some cases a legal responsibility - to make it clear to the public where they stand on those questions. And I hoped to get that clarification on public record from a means not dissimilar to the one that Esther suggested.

An all-out debate with them on this forum is obviously out of the question. Almost nobody wants it, and Esther, while I agree with you about so much, I think we have to respect that verdict. I'm not quite clear whether nobody even wants to see them publicly grilled elsewhere on these matters, or whether nobody would want to see something like a TV debate between someone like Wessely and one of our greatest advocates, but if nobody wants that I'd have to conclude they are afraid we are actually going to be proved wrong, or afraid that Wessely is a total genius, and if that's the case then that is the difference between us. I think the case that people present here is watertight.

So how about this? Could one or more of us email a series of relevant public figures - loads and loads of them, potentially - to get them to answer the questions Cort has raised. If you did lots of them you might even call it some kind of a survey. We could even get some relevant stats out of such a survey, and we could at least have a simple way to distinguish the bad guys from the very bad guys. :D I urge you all to consider the potential political benefits of obtaining public statements as to people's beliefs in 2010, whatever those beliefs might be. If they refuse to answer, they refuse to answer - and just as in science, a negative finding will still be a very useful piece of evidence...

To remind you of Cort's questions:


I would be very interested to know:

  • exactly what CBT is, ie. what different therapies it entails. Some of them such as pacing and sleep hygiene seem very normal. I'm not sure about the others. I'd really like a better understanding of what it is
  • What claims can they make about CBT - how effective is it in what percent of patients? I imagine that we'd find that it is helpful to some degree in some patients and not helpful at all in others. If so, how do they account for those patients it does not provide a cure for?
  • Are they really suggesting that CBT is the only possible treatment for CFS? And that research into patient physiology should not continue?
  • What kind of illness do they think ME/CFS is? Besides being allied with FM and others - what other illnesses do they believe it is most closely related to?
  • Could any of the physiological abnormalities in CFS suggest that CBT and other therapies like that could be helpful in some degree?

The questions would need rewording, and they aren't exactly the same as my own questions, and I'm sure there are more we could propose. IF anybody wants to get them to answer those sort of questions.

I can understand why nobody wants to let the wolf into the sheep pen. But if nobody here wants to see them publicly define their position, and nobody can see any benefit in that, then I think I will find that impossible to understand.
 
G

Gerwyn

Guest
That does seem to be the only response people have: "There's proof in there somewhere - I'm sure of it."

Wouldn't it be useful for those who think it has been proven that CFS is a physical disease to have a more compelling argument ready to deploy? If all we have is a reference to 'years of research and politics' I really think it would be best to be more modest in our claims about our understanding of the nature of CFS. If there is clear proof that CFS is a physical condition, it doesn't seem to be widely known about.

thereis none so blind than those who do not wish to see I dnt think it has ben proven it has been proven there is no scientific evidence re psychological causation at all clear
 
G

Gerwyn

Guest
I'm very sorry Kim, but personally, I don't want the thread to die just yet. There is an element of what Esther12 is trying to say that I want to end up going somewhere productive. But you are quite right to point out that anyone who doesn't want the thread to continue would do well to ignore it.

This thread has actually been very helpful - to me, at least. It has been illuminating on many levels. It has helped me to understand the depth of feeling in situations like this, and it has changed my views about quite a few things. I am now a lot more understanding of why most people do not respond to situations like ours in the way Esther and I want to, and I can see that there's no point in trying to force them to. The way Esther and I think about things is an extremely unusual one, I think, and whether it is fantastically brave or merely completely foolhardy, after all my years, I can still never quite be sure. But I do know from my own experience that our position is almost never understood, and though I'm disappointed by that, I no longer expect other people to see things the same way.

I think Sing's post a little earlier was absolutely fantastic. One of the best posts I've ever read, for its intelligence and sensitivity. For myself, I accept that analysis 100%. Only problem is, it still doesn't change my unusual personality! But it is accurate in respect of myself, and it is the post of a true peacemaker.

What has disappointed me about this thread is that nobody has attempted to resolve the impasse by seeking to develop the proposal into any kind of a 'third way' or compromise solution, or to seek to develop common ground. Only Cort, as far as I can see, has contributed positively in this respect. So for now, I will restrict myself to presenting my own modest proposal, and if nobody is remotely interested in that either, I really will give up on promoting all these kinds of ideas here, and look for another place to achieve what I want in those areas. If this place is about something else, then so be it.

Here's my proposal. I desperately want to know the psychologists' answers to the questions Cort posed. I think their jobs give them a clear moral responsibility - and perhaps in some cases a legal responsibility - to make it clear to the public where they stand on those questions. And I hoped to get that clarification on public record from a means not dissimilar to the one that Esther suggested.

An all-out debate with them on this forum is obviously out of the question. Almost nobody wants it, and Esther, while I agree with you about so much, I think we have to respect that verdict. I'm not quite clear whether nobody even wants to see them publicly grilled elsewhere on these matters, or whether nobody would want to see something like a TV debate between someone like Wessely and one of our greatest advocates, but if nobody wants that I'd have to conclude they are afraid we are actually going to be proved wrong, or afraid that Wessely is a total genius, and if that's the case then that is the difference between us. I think the case that people present here is watertight.

So how about this? Could one or more of us email a series of relevant public figures - loads and loads of them, potentially - to get them to answer the questions Cort has raised. If you did lots of them you might even call it some kind of a survey. We could even get some relevant stats out of such a survey, and we could at least have a simple way to distinguish the bad guys from the very bad guys. :D I urge you all to consider the potential political benefits of obtaining public statements as to people's beliefs in 2010, whatever those beliefs might be. If they refuse to answer, they refuse to answer - and just as in science, a negative finding will still be a very useful piece of evidence...

To remind you of Cort's questions:




The questions would need rewording, and they aren't exactly the same as my own questions, and I'm sure there are more we could propose. IF anybody wants to get them to answer those sort of questions.

I can understand why nobody wants to let the wolf into the sheep pen. But if nobody here wants to see them publicly define their position, and nobody can see any benefit in that, then I think I will find that impossible to understand.

The anwers are already in the public domain and they are totally unambiguous. thinking about things is fine as long as the thoughts are not confused with reality.Thinking can generate questions but unfortunately few if any objective answers.

One of the problems we face is that the psychos are already trying to construct a "a third way".They are repeatedly stating that in the "postmodern age" the traditional devision between the organic and the psychological is no longer appropiate. In objective terms this is not true but they are trying a relabelling excercise so that any illness of their choosing falls within their remitt

If you told them about your "unusual personality" they would take that as cast iron evidence that your"CFS" was of psychological origin

You would have to ask them to precisely define everyword they used or you would have little or no chance of understanding the true meaning of their apparently "very reanonable position"

The problem is not letting the wolf into the sheeps den rather than you would be dealing with a wolf in sheeps clothing
 

brenda

Senior Member
Messages
2,266
Location
UK
:eek::eek::eek::eek::eek:

Seriously folks, you had better put this energy into doing research on people who have healed themselves from ME/CFS and all serious illnesses.

Esthers idea is a non starter as the issue is not concerning logic and reasoning. It is about a deliberate move to take all sick people off SS. The answer is to get better.
 

brenda

Senior Member
Messages
2,266
Location
UK
further thoughts

Those who think that they only have to prove they have a virus/cfs and justice will be done - ie they will get their benefits and acknowledgment they really are ill are imo shooting for stars since we entered the new age of post modernism where there is no truth and therefore no justice.

I admit that modernism had its faults but our societies were built on Christian values and now, thank you atheists this will be overturned.

If anyone needs motivation then think that you need to recover for your lifes worth. I think it will come to that. The powers that be will not be moved and they are much stronger than we are. The only way to beat them is to recover your health. And as it takes so long it is best to get going asap.

My advice is raw at least 85% food, no coffee no alcohol no drugs but plenty of water to start healing from the cell up and if you cannot do that you are in denial of the real bad place you are in.
 

jeffrez

Senior Member
Messages
1,112
Location
NY
This discussion of postmodernism I admit I find interesting. My belief is that the reason the mainstream medical community and the psychologizers don't understand this illness is precisely because they are coming at it from the standpoint of modern medicine, which is limited and flawed in a very fundamental way. The problem is that we are no longer in modernism - as brenda has just pointed out, we are now in postmodernism. So their thinking is like 500 years old, and is now outdated, incomplete, and even erroneous. That's why they can't understand any of these so-called emerging disorders - chronic fatigue syndrome, gulf war syndrome, fibromyalgia, chemical sensitivities, etc. These are postmodern disorders, and they can't be understood from the incomplete and faulty perspective of modernism. It's like asking them to explain elements of quantum physics from the standpoint of newtonian mechanics. It can't be done and leads to all kinds of paradoxes and problems.

Unfortunately, however, they don't know they are behind, and they still "believe their own bullsh-t," as the colloquial phrase has it. Postmodernism has been defined as an "incredulity with metanarratives," but the mainstream doctors still believe all their metanarratives, i.e., the modernist european "enlightenment project" narratives, which were a reaction to what was perceived to be the superstitions of the medieval period (enlightenment vs. dark ages - light vs. dark, etc.), but which turned out to be as superstitious in their own way as the superstitions they were trying to cast off and eschew. So the thinking of all these mainstream doctors is rooted in thinking that is 500+ years old, and the ironic thing is that in their smugness they think they are "up to date" and "modern," and most of them don't even know that we (meaning we culturally, philosophically and from the standpoint of so-called knowledge) have moved beyond that now. They look as foolish from a postmodern perspective believing implicitly in their modern medicine and science as the people of the middle ages looked believing in witches' brew to the people of the modernist period. More than a little naive, if not actually quaint. Postmodern medicine = integrative medicine, which the mainstream usually scoffs at, not understanding that that is actually the future (or the present, really). "Modern" medicine is the past, and is outdated.
 
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