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

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Cort

Phoenix Rising Founder
I apologize for not emphasizing the very important point that people can and have are still do get very damaged by CBT practitioners. People under the influence of these practitioners do what people with CFS do, unfortunately, all the time; they try to ignore and push through their symptoms and end up in worse shape than ever, and sometimes severely, severely disabled. Its a horrible outcome; it happens with CBT and without it.

I would also note in my little overview the damage that the overemphasis on CBT has done to entire populations of patients who need medical treatment and can't even begin to get it because of that.

I am slowly building a 'lifestyle section' on my website. I'm sure that some people will be offended by parts of it but it's emphasizes that unless you find the right activity level for yourself any kind of behavioral - to use a terrible word - practice is basically impossible.

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.

So now I watch and try to kind of manipulate my thoughts and I'm much more careful about my activity levels - which means very limited walks of any duration. As long as I stay within my energy envelope those things help. If I push out of it they lose any power they have very quickly.

But people hate any idea that watching ones thoughts can help - so that's a problem! I think of CFS as being a very depleted, overstressed system - for whatever reason (infection, brain damage, inflammation) that makes everything matter everything - activity levels, medications, thoughts, foods, chemicals, emotions...everything. I can only handle the smallest amounts of medications - its the same thing. I put that in the same category as everything else - a supersensitive system.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Cort you said, "But people hate any idea that watching ones thoughts can help - so that's a problem!"

I'll just speak for myself; "watching ones thoughts" is not what I mean when I say "CBT." To me they are completely different things. Completely.

QUOTE FROM CORT: I think of CFS as being a very depleted, overstressed system - for whatever reason (infection, brain damage, inflammation) that makes everything matter everything - activity levels, medications, thoughts, foods, chemicals, emotions...everything. I can only handle the smallest amounts of medications - its the same thing. I put that in the same category as everything else - a supersensitive system.

I don't disagree with this. But this has nothing to do with CBT as it is being used with ME/CFS.

I think we need all kinds of help from changing our thoughts, to spiritual practices, to finding ways to calm our nervous systems, to relationships, to counseling, to communities, to more laughter. But these have nothing to do with CBT as it is taught and used with ME/CFS.

Strategies that tell us that our illness is based on wrong illness beliefs are completely different from strategies that will teach us how to better manage and live with our illness.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Ideas like this are being discussed on other threads.

Here's a post from biopsychobabble on the thread My son & i are giving the lightning process a go.

QUOTE FROM BIOPSYCHOBABBLE: The increased sympathetic nervous system activity and chronic arousal (if relevant) may be a consequence of the body and mind trying to compensate for the increased demands and limitations imposed on it. Excessive stimulation would of course have negative consequences, especially when the tolerance for it is reduced. I have tried various techniques that Countrygirl would call "de-arousing", these help induce a sense of relaxation/peace/centredness but do not improve the underlying baseline status of CFS even after months of practice. However, I do think they can be helpful to symptoms, especially for preventing and managing post-exertion symptom exacerbation.

I think this explains it well.
 
Messages
13,774
Esther12, after coming across your posts so many times and not commenting on them, I've decided you do not pay attention to the posts of others. If you did, you would not write the posts you do.

It would be great if you could quote an example so I can have a look at what you mean.

This explains a lot. I think many of us on the forum have made an assumption, based on the frequency of your posts, that you read more here on the forums, including the many medical references available here than you actually do.

What is it that's required for an illness to be classed as a neuro-immune disease? I've tried looking into this, and haven't found any clear answers - I found someone saying it was something the WPI had come up with, and it doesn't seem to be a widely used term. If it's a term the WPI created for use with CFS, then CFS will, by definition, be a neuro-immune disease, but I'm not sure if that label really tells us much about the nature of CFS.

I try to be open about the fact I'm poorly read on the medical literature (there's a lot of it, and it's generally rather dire). I read a fair bit when I was first ill, then stopped because it all seemed such drivel, and have since forgotten a lot. I've started to read up on it again since the XMRV news.

You might benefit from reading more of the medical information available. Have you perhaps thought of getting psychological help with your illness? I'm not being flip or sarcastic, I'm serious. That would perhaps give you an opportunity to have an honest conversation with someone who believes ME is a psychological illness. But if I were you, I'd become as educated as possible, first.

I'm sure I would benefit from reading more of the medical information available.

Whenever I pursue psychological help I'm met by psychologists who insist I am not psychologically ill! After my most extensive assessment the psychologist told me that my symptoms were "entirely physical in nature". Personally I'm no more convinced by that than if a doctor were to argue that because they could not find what was physically making me ill, it must be psychological. Arguments from ignorance do not allow for that sort of confidence. This is what's so frustrating - no-one ever wants to claim I, as an individual, am psychologically ill - but the leading researchers in the illness I've been diagnosed with insist that I am, based on randomised controlled trials on people with some similar symptoms.

You're right about this thread probably turning into more of a squabble than anything else. I believe that your intentions were good, but am really surprised that you didn't foresee what would happen. I'm not surprised that you aren't aware of how lacking in empathy you seem to be. That's not a criticism of your character either, it's just an observation over the past months. You've grown on me over the months, Esther, but now as you have admitted, you have been holding back.

When I've started fairly blunt and honest discussions with extremist Islamists, some of them were offended, but many were able to recognise that my approach was more respectful than the obsequious pandering that many western liberals think is required. I mean it as a sign of respect when I write with the assumption that people are able to rise above their own emotional attachments and respond to my points (which are almost never motivated by malice) as they are, rather than seeing any break with the party line as a danger which must be stamped out. It's not a lack of empathy, but maybe a misplaced optimism. I don't see where I've even been blunt here either!

I have to admit, I really didn't think anyone would believe that encouraging such a discussion would be dangerous. I expected some to think it was a waste of time - but I just assumed that they'd be happy to ignore it.
 

Lily

*Believe*
Messages
677
Wow Esther, I don't know quite what to say, I at a loss for words. I think your questions deserve an answer and I'm about pooped out for today. I can only say that neuroimmunology has been around for a while, and I can assure you that it was not initiated by WPI. Some neuroimmune diseases are MS, Parkinson's and Alzheimer's and a few others I can't seem to think of at the moment.

Now that you mention it, I do remember you saying before that you have seen psychologists and they do not believe you have a psychological illness. Same here. But I never doubted it.

I don't know what else to say. ......you're just coming from a really different place than most of us, and I don't know how to help you.
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
Esther12,

I think this whole idea of your thread is rather naive.

You don't seriously think a Medic who believes CFS is primarily psychological is going to post in this thread (under cover) do you?

This whole concept is only going to stir up negative emotions & re-open old wounds.

How about suggesting a thread title to promote a positive outlook & generate some uplifting & inspiring conversation?

Not rake over or attack a single Medico foolish enough to reply.

Apparently Wessely looks at this board. Other doctors and psychologist probably do to. I've been told some are under-cover (I've even been accused of being one of them). Wouldn't it be great to be able to have an serious and honest discussion with one of them?

In public they always seem rather evasive, or else utterly disinterested in the clearly disordered thoughts of their patients, but here they can use an alias and just discuss their ideas and the evidence they thinks supports them without fear of compromising their position.

I'm sure a lot of us have distorted views as to what the psychologisers think, and it would be great to be set straight. Most of the time it seems the psychologisers and patients just talk past each other: We blame them for being slippery, dishonest and manipulative. They blame us for being militant and refusing to entertain even the possibility that psychology could helpful. Lets see!

Please?

(Edited the title for clarity. Hard to do with so few letters!)
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Esther12,

I think this whole idea of your thread is rather naive.

You don't seriously think a Medic who believes CFS is primarily psychological is going to post in this thread (under cover) do you?

Not only that, but really... what's the point?

If the intent is to recruit an individual from this field in order to engage in debate with them in the hopes of converting them to our point of view and gain support from them, yes this is EXTREMELY naive.

The vast majority of practitioners in the medical field are complete and utter sociopaths that are driven by greed and allegiance to their even greedier corporate masters. The attitude directed towards of those with CFS are entirely designed to conform to these monied interests.

Hell, even the handful of doctors that we have left, who are well intentioned, are mostly incompetent and of little help.

As far a I'm concerned, we are pretty much on our own to heal ourselves.
 
G

Gerwyn

Guest
I apologize for not emphasizing the very important point that people can and have are still do get very damaged by CBT practitioners. People under the influence of these practitioners do what people with CFS do, unfortunately, all the time; they try to ignore and push through their symptoms and end up in worse shape than ever, and sometimes severely, severely disabled. Its a horrible outcome; it happens with CBT and without it.

I would also note in my little overview the damage that the overemphasis on CBT has done to entire populations of patients who need medical treatment and can't even begin to get it because of that.

I am slowly building a 'lifestyle section' on my website. I'm sure that some people will be offended by parts of it but it's emphasizes that unless you find the right activity level for yourself any kind of behavioral - to use a terrible word - practice is basically impossible.

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.

So now I watch and try to kind of manipulate my thoughts and I'm much more careful about my activity levels - which means very limited walks of any duration. As long as I stay within my energy envelope those things help. If I push out of it they lose any power they have very quickly.

But people hate any idea that watching ones thoughts can help - so that's a problem! I think of CFS as being a very depleted, overstressed system - for whatever reason (infection, brain damage, inflammation) that makes everything matter everything - activity levels, medications, thoughts, foods, chemicals, emotions...everything. I can only handle the smallest amounts of medications - its the same thing. I put that in the same category as everything else - a supersensitive system.

How are you defining stresed here.Stress caused elevation of the HPA axis as does anxiety and depression.Autonomic dysregulation is cetainly involved .I am not sure what you mean by supersensitive.therapeutic intervention of any kind can be very useful with anyone in reframing and coming to terms with their limitations.

No psychological tratment of any kind has ever been shown to have any effect on the core illness symptoms so none have a claim to work as a treatment for ME

When people(not you0 propagate literature purporting CBT to be a treatment for ME or "working" it creates an enormous problem.

The problem is that Medics are taught to initiate treatments based on diagnosis.Therefore if CBT is advocated as a treatment then in the mind of a Dr the the diagnosis is psychological.Wesselly knows this this is why he uses the word.
 
G

Gerwyn

Guest
Sleep hygine and pacing are nothing to do with CBT


Effective as intreatment 0%

CBT is not a cure period whatever the psychos "think" assuming they do that of course

You cant cure the physiological with the psychological They like to define terms their own way of course but they will not tell you they are doing that PURE TRICKERY.
 
G

Gerwyn

Guest
@parvofighter:

"One of the reasons I come to this forum is because this is a community of patients who "get it"."

I come here mainly for XMRV news... But I've never liked the idea of spending my time getting information from people with similar beliefs to me - doing so can make us soft (I think that's one of the problems with the psychologisers). I'm a bit of a lefty, but get my news mainly from Fox News, The Economist, Daily Dish and Daily Mail - I don't want to only read the views of those who I think 'get it'. A healthy forum needs a wide range of beliefs to be presented for examination and discussion. I think that some people here are far too willing to jump down the throats of those they see as heretical, while ignoring the errors made by those they see as being on the right side. I don't think this is healthy.

"The last thing that seriously ill ME/CFS patients need is someone to plant the seed of doubt that this complex neuro-immune disease is all their fault; that the remitting/relapsing nature of this disease proves we're neurotic."

This is a reoccuring theme with me. Where-ever I go, I get in trouble for spreading doubt. On religious websites, atheist websites, political websites - here. I like doubt. I think we too easily slip into a misplaced confidence in our own beliefs, and a casual dismissal of these we disagree with. I try to avoid that, and remind myself of my uncertainties and the weaknesses of my own arguments. I understand that this can be unsettling and will use up energy - some people may think that it is better to avoid acknowledging their own doubts so that they can function more effectively. I'm not that interested in the 'functional' approach - I want to try to believe what's most likely to be true, and am quite willing to make sacrifices for this aim.

Generally, I'm willing to impose my doubt upon others, and don't think we have a right to avoid arguments and debate. But given that many people are seriously ill here, and lacking the normal resources for debate, self-criticism, etc, I try to be a little softer; make it clear that people do not need to respond and can ignore my comments. I think that the fact I sometimes feel an urge to self-censor so I don't get sucked into a pointless squabble is a bad thing for the forum (as well as a refelction of my own weakness).

I think that having CFS and engaging seriously with the debate about it's nature is especially difficult. I often feel like I'm trapped in a first year philosophy dilema (How do we know what we know?) but unable to take the usual dismissive and pragmatic way out because of the unknown cause of my illness. These emotional strains may well be best avoided, but I find myself drawn to the arguments because I'm interested in the truth and genuinely uncertain as to what that may be. I think that being able to have a serious and honest discussion with a proponent of the psychological view of CFS would be a helpful way of clarifying my own ideas. Currently I'm unable to take them seriously, and it would be great to be able to talk this over with them and see if 1) there really is nothing but quackery to thier beliefs or 2) they have some ideas which I've just been previously unable to understand or they've been unwilling to communicate clearly.

"You give the psycholobby too much credit if you believe they can brainwash us."

I said that I wasn't worried about it. I think someone else mentioned it.

"Your dismissal of forum members is palpable, as is your indifference to genuinely upsetting seriously ill patients. "

Others had raised concerns that any such discussion would just provide fodder to show how unreasonable we were, and I was saying that I did not think that need be the case.

I've read your post on the BMJ and thought it was very interesting. Thanks.


I come here mainly for XMRV news... But I've never liked the idea of spending my time getting information from people with similar beliefs to me - doing so can make us soft (I think that's one of the problems with the psychologisers). I'm a bit of a lefty, but get my news mainly from Fox News, The Economist, Daily Dish and Daily Mail

Those "news sources" are peddlars of propaganda we dont really need anymore of such "views" and "beliefs" do we? We do however need facts

This is a reoccuring theme with me. Where-ever I go, I get in trouble for spreading doubt

In this area there is nothing to doubt the science speaks for itself It is mothing to do with misplaced confidence in our beliefs. The ones who ignore the science have that problem

thGenerally, I'm willing to impose my doubt upon oers, and don't think we have a right to avoid arguments and debate

That is a truly remarkable statement not only are you willing to impose your wholly subjective viewpoints on others but you deny their right not to engage in a debate about such speculation WOW

g the nBut given that many people are seriously ill here, and lackinormal resources for debate, self-criticism, etc, I try to be a little softer; make it clear that people do not need to respond and can ignore my comments

In this area there is nothing to debate re psychological causation and ME sufferers have no need to be self critical .The psychos ,on the other hand, do have a great need to engage in such reflection but apparently permanently lack the resourses to do so.

I think that having CFS and engaging seriously with the debate about it's nature is especially difficult

No one can seriously enter into a debate about the nature of the illness there is no no scientific debate possible

I often feel like I'm trapped in a first year philosophy dilema (How do we know what we know?) but unable to take the usual dismissive and pragmatic way out because of the unknown cause of my illness.

you have just highlighted the problem those two "knows" have different meanings.The argument is nothing but a product of the irrationality of language.Substitute different words and the problem vanishes.

Our Psycho friends know all to well the irrationality of words using terms like cure and treatment outside their normal context and create abnormal meanings

Do you seriously think you can have an honest conversation with such people


 

jeffrez

Senior Member
Messages
1,112
Location
NY
I try not to even engage with the "psychologizing" crowd. They are among the most smug, ignorant and close-minded people on the planet, no exaggeration. A respected Harvard MD points to over 4,000 studies that validate CFS as a PHYSICAL disease or disorder. The psychologizers ignore absolutely any and all evidence showing that the disease is physiological. They will ignore any lab test, any patient complaint, any physical evidence at all to maintain their fixed false beliefs. That's the definition of being delusional.

Where are the studies proving CFS is a psychological disorder? They don't have any. They have only opinion, with no proof. When you persist in believing your own unfounded opinion without proof while ignoring all the actual, physical, objective evidence, that makes you irrational and delusional. There is no point in arguing, debating or discussing with a delusional person - in fact, the psychologizers themselves acknowledge that the opposite is the case, that the best way to deal with a delusion is not to encourage it.

Because the evidence shows that they would not give up their delusions even if a physical cure were found -- they don't give them up now even though the scientific evidence is so heavily weighted against them -- that signifies to me that discussion or "debate" with these people would be fruitless and pointless. They need antipsychotic medication and possibly supportive psychotherapy, not debate. They need a medical intervention for their delusional beliefs. Like the paranoiac, no amount of "discussion" is going to shake their convictions. And CBT won't work for them, either, at least not on its own. They need medication. Otherwise, they will just continue to maintain their delusional, irrational belief system without insight no matter what the 4,000+ scientific studies show. Sad, but the evidence shows it's true.
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
@parvofighter:

"Others had raised concerns that any such discussion would just provide fodder to show how unreasonable we were, and I was saying that I did not think that need be the case.

Esther I think you've misrepresented people's concerns here in a key way. I, for example, am NOT concerned that fodder will be made available to show how unreasonable people are, because I don't think people are actually unreasonable in their concerns about the psychiatric paradigm and the way its proponents represent the community. I am concerned about how directly engaging with those proponents would allow them to MISREPRESENT, using ad hominem, the concerns of the community. It is a entirely different concern.

You've managed, in your above sentence, to misrepresent stated concerns as people trying to hide the 'unreasonableness' of the community, when that's not the case at all.

QUOTE=Esther12;61302]@parvofighter:

"This is a reoccuring theme with me. Where-ever I go, I get in trouble for spreading doubt. On religious websites, atheist websites, political websites - here. I like doubt. I think we too easily slip into a misplaced confidence in our own beliefs, and a casual dismissal of these we disagree with. I try to avoid that, and remind myself of my uncertainties and the weaknesses of my own arguments. I understand that this can be unsettling and will use up energy - some people may think that it is better to avoid acknowledging their own doubts so that they can function more effectively[/QUOTE]

Has it occurred to you that people may not be entertaining the same 'doubts' as you because they've rationally, after analysing the evidence available, come to the decision that their position is reasonable and that 'doubt' would be misplaced? Or is it only your 'doubts' that are reasonable?
 

creekfeet

Sockfeet
Messages
553
Location
Eastern High Sierra
In the long months when my children and I were misdiagnosed, I open-mindedly entertained the possibility that we were all suddenly depressed. I had no problem with a psychological diagnosis if it fit. All I wanted was a clear diagnosis so we could get on with treatment.

I really did not want a diagnosis for which there was no clear treatment.

I only wish that if we all had to suddenly become ill, it could have been an illness that had a clear and helpful prescription.

I've studied for three years now and it's clear to me that we have a physical ailment.

Sick in bed for three years? Rendered impoverished, lost everything, all but homeless, forced to move twice? Damn right there's some psychological trauma.

Yes, psychological support can help us, as it can help cancer and MS patients.

No, psychology cannot provide a cure, not any more than it can for cancer or MS patients.

At least, not for what my kids and I got.
 
R

Robin

Guest
Whenever I pursue psychological help I'm met by psychologists who insist I am not psychologically ill! After my most extensive assessment the psychologist told me that my symptoms were "entirely physical in nature". Personally I'm no more convinced by that than if a doctor were to argue that because they could not find what was physically making me ill, it must be psychological. Arguments from ignorance do not allow for that sort of confidence. This is what's so frustrating - no-one ever wants to claim I, as an individual, am psychologically ill - but the leading researchers in the illness I've been diagnosed with insist that I am, based on randomised controlled trials on people with some similar symptoms.

The only way you can really test your doubt, Esther, is by following the advice of the CBT/GET gulags: remind yourself that your body is not really ill, and engage in physical activity. If you really have ME/CFS, I guarantee you will no longer be confused after that.

I'm just unclear about why this type of debate, whether it's an internal conversation or something engaged on the forum with members of the Wessely school -- is constructive for you? After years of this illness I have no doubt that what I'm suffering from is 100% physical, and thus no interest in epistemology. I suspect you're trying to rectify the cognitive dissonance of official research and patient experience, but, I think that's futile. I'm sure you can easily come up with historical examples, both politically and medically, of the people in charge being wrong.

You yourself started a thread about the placebo effect and the problem of self-reported patient outcomes in RCTs and you must be aware of the glaring cohort questions, too. Sometimes the answers are the most simple: maybe people will not to admit to being psychologically ill because they are not. (I say this as someone who has a strong streak of psychiatric illness in her family and no shame about it. I would prefer to be somatic because it would be a lot easier to get well.) The strongest argument against the Wessely school is there there are still so many sick people. Those interventions are not getting people off of disability -- I suspect the numbers are steadily growing. If I were the UK government -- Wessely, White and friends would be so fired.

I have to admit, I really didn't think anyone would believe that encouraging such a discussion would be dangerous.

Because people have been really hurt and their lives destroyed by the Wessely school dominating research for so many years?

What is it that's required for an illness to be classed as a neuro-immune disease? I've tried looking into this, and haven't found any clear answers

Did you try wiki? http://en.wikipedia.org/wiki/Neuroimmunology

Neuroimmunology is the study of how the manifestation of infection (cytokines) and inflammation affect the central nervous system. (Did you see the Light study about elevated cytokines in CFS after exercise?) I don't know if there is an "official" classification, it's just an area of medical science. My friend works in a neuroendocrine lab and studies neurological disease affected by cortisol (and other hormones) though they're not classified as neuroendocrine. His campus also has a neuroimmunology lab which studies autoimmune-type diseases. MS and lupus are examples. But neuroimmunology could also be influenza, or, spinal cord damage. Understand now?

The WPI, judging by this VIPdx page, believes that CFS is a disorder of viral pathways and they have a whole flow chart about the lab tests they use to diagnose it! My guess is that the choice of name for the WPI was an issue of politics. The Whittemore Peterson Institute for Chronic Fatigue Syndrome is less likely to get funding than the Whittemore Peterson Institue for Neuroimmune Disease!
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Wow Esther, I don't know quite what to say, I at a loss for words. I think your questions deserve an answer and I'm about pooped out for today. I can only say that neuroimmunology has been around for a while, and I can assure you that it was not initiated by WPI. Some neuroimmune diseases are MS, Parkinson's and Alzheimer's and a few others I can't seem to think of at the moment.

Now that you mention it, I do remember you saying before that you have seen psychologists and they do not believe you have a psychological illness. Same here. But I never doubted it.

I have to concur with Lily. Been reading your posts for a while now Esther. Personally I think you do qualify for a psychological diagnosis. Normally I wouldn't say that to a person, but you are unusual in that you actually seem to want a psych diagnosis. I really think you should go back and get a second opinion from the psychiatrists, because I think they are wrong.

Good luck!
 

Lily

*Believe*
Messages
677
I have to concur with Lily. Been reading your posts for a while now Esther. Personally I think you do qualify for a psychological diagnosis. Normally I wouldn't say that to a person, but you are unusual in that you actually seem to want a psych diagnosis. I really think you should go back and get a second opinion from the psychiatrists, because I think they are wrong.

Good luck!

Yes, Esther, I agree with Garcia, and just wanted to clarify when I said "I never doubted it", I was referring to myself. And I also agree with Robin's suggestion of trying CBT/GET or other physical activity. I do wish you well, as I think you seem quite lost in a sad sort of way.
 
Messages
13,774
Re CBT:

One of the times I was psychologically assessed was to see if I was eligible for CBT (I wasn’t). My partner has paid for it privately, and found it to be useful for helping with sleep problems. The therapist didn’t think that they could help with the broader aspects of the illness saying: “You seem to be dealing well with a very difficult situation”.

I think that there’s some controversy over what exactly constitutes CBT (I mean amongst CBT practitioners, rather than just on this forum). I know that a lot here will automatically associate CBT with the rather dishonest and manipulative approach promoted by Chalder etc, but that is not the only way CBT can be used with CFS patients. It is a difficult illness to live with, and for some patients I expect CBT will be able to help them with aspects of it.

You don't seriously think a Medic who believes CFS is primarily psychological is going to post in this thread (under cover) do you?

This whole concept is only going to stir up negative emotions & re-open old wounds.

How about suggesting a thread title to promote a positive outlook & generate some uplifting & inspiring conversation?


I don’t know. We know some read the site. If I was them, I’d want to present my ideas to a sceptical audience as a way of testing them. Forum threads can get off track – but so long as both sides are genuinely interested in an honest discussion I think this would be a good venue: it allows for something close to a ‘conversation’, but with a clear record of what was said, and how arguments were developed.

Not only that, but really... what's the point?

If the intent is to recruit an individual from this field in order to engage in debate with them in the hopes of converting them to our point of view and gain support from them, yes this is EXTREMELY naive.

I really want to get a better understanding of why they think their beliefs are reasonable. There seems to have been a total breakdown in communication between patients and psychologisers and I worry that this means we are misunderstanding them and they us.

I think discussions between opposing viewpoints are always a good thing.

No one can seriously enter into a debate about the nature of the illness there is no no scientific debate possible

I really don’t think it’s that clear cut at the moment. To me, it really doesn’t seem as if this debate is over, for example: If it was really so one sided, then shouldn’t the debate be won at wikipedia, and CFS classed as a physical illness? When I read discussions between those who claim CFS has been proven to be a physical illness, and those who are still unsure, it never seems to end in a clear victory for certainty that CFS is a physical illness.

I think some others had raised points similar to the rest of your post, which I replied to at the time. Ta.

There is no point in arguing, debating or discussing with a delusional person - in fact, the psychologizers themselves acknowledge that the opposite is the case, that the best way to deal with a delusion is not to encourage it.

LOL. But both sides are trying not to engage with the other’s delusions!

I think this is unfair on whoever is genuinely demented: I feel that I have a responsibility to them to show that their beliefs are unreasonable – just as they should feel a responsibility to explain to me why they think my beliefs are unreasonable. Otherwise we just segregate into little sub-groups, all feeling smugly superior to the deluded others.

@monkeybusiness : Thanks for the e-mail.

Esther I think you've misrepresented people's concerns here in a key way. I, for example, am NOT concerned that fodder will be made available to show how unreasonable people are, because I don't think people are actually unreasonable in their concerns about the psychiatric paradigm and the way its proponents represent the community. I am concerned about how directly engaging with those proponents would allow them to MISREPRESENT, using ad hominem, the concerns of the community. It is a entirely different concern.

You've managed, in your above sentence, to misrepresent stated concerns as people trying to hide the 'unreasonableness' of the community, when that's not the case at all.

If the emotional outbursts you were concerned about were reasonable, then surely it would be preferable to have them used as examples of our extremism, as on a public forum context and explanations can be seen, where as when the psychologisers reference private correspondence or personal experiences no-one can check up on them and they’re generally just given the benefit of the doubt.


Has it occurred to you that people may not be entertaining the same 'doubts' as you because they've rationally, after analysing the evidence available, come to the decision that their position is reasonable and that 'doubt' would be misplaced? Or is it only your 'doubts' that are reasonable?

Of course.

The only way you can really test your doubt, Esther, is by following the advice of the CBT/GET gulags: remind yourself that your body is not really ill, and engage in physical activity. If you really have ME/CFS, I guarantee you will no longer be confused after that.

I'm just unclear about why this type of debate, whether it's an internal conversation or something engaged on the forum with members of the Wessely school -- is constructive for you? After years of this illness I have no doubt that what I'm suffering from is 100% physical, and thus no interest in epistemology. I suspect you're trying to rectify the cognitive dissonance of official research and patient experience, but, I think that's futile. I'm sure you can easily come up with historical examples, both politically and medically, of the people in charge being wrong.

You yourself started a thread about the placebo effect and the problem of self-reported patient outcomes in RCTs and you must be aware of the glaring cohort questions, too. Sometimes the answers are the most simple: maybe people will not to admit to being psychologically ill because they are not. (I say this as someone who has a strong streak of psychiatric illness in her family and no shame about it. I would prefer to be somatic because it would be a lot easier to get well.) The strongest argument against the Wessely school is there there are still so many sick people. Those interventions are not getting people off of disability -- I suspect the numbers are steadily growing. If I were the UK government -- Wessely, White and friends would be so fired.

I certainly agree that there are problems with the way CBT and GET are researched and promoted, but I don’t think the fact that I have found GET to be unhelpful proves that my own psychological and emotional responses ar not a significant factor in my illness.

Indeed – the fact that the psychological research surrounding CFS seems so weak could even make it more likely CFS has a significant psychological component: if it did do, would you really trust those guys to have identified it? I certainly am not impressed by the psychological research that surround CFS, but I’d still be really interested to discuss it all with someone who is.


Because people have been really hurt and their lives destroyed by the Wessely school dominating research for so many years?

I don’t really think that follows. All the more reason to discuss these things with them imo.

Did you try wiki? http://en.wikipedia.org/wiki/Neuroimmunology

Neuroimmunology is the study of how the manifestation of infection (cytokines) and inflammation affect the central nervous system. (Did you see the Light study about elevated cytokines in CFS after exercise?) I don't know if there is an "official" classification, it's just an area of medical science. My friend works in a neuroendocrine lab and studies neurological disease affected by cortisol (and other hormones) though they're not classified as neuroendocrine. His campus also has a neuroimmunology lab which studies autoimmune-type diseases. MS and lupus are examples. But neuroimmunology could also be influenza, or, spinal cord damage. Understand now?

The WPI, judging by this VIPdx page, believes that CFS is a disorder of viral pathways and they have a whole flow chart about the lab tests they use to diagnose it! My guess is that the choice of name for the WPI was an issue of politics. The Whittemore Peterson Institute for Chronic Fatigue Syndrome is less likely to get funding than the Whittemore Peterson Institue for Neuroimmune Disease!

Thanks a lot for that link.

I’m still not entirely clear on it all – it has psycho-somatic illnesses in the ‘see also’ section, and it seemed a bit ambiguous as to why and illness would be classed as neuro-immune, but it was still interesting.

I have to concur with Lily. Been reading your posts for a while now Esther. Personally I think you do qualify for a psychological diagnosis. Normally I wouldn't say that to a person, but you are unusual in that you actually seem to want a psych diagnosis. I really think you should go back and get a second opinion from the psychiatrists, because I think they are wrong.

I don’t want a psychological diagnosis – I’m just interested in the truth. If I’m psychologically ill, then I’d want a psychological diagnosis and an explanation as to why it was made. If not, then I want the medical community to acknowledge that.

I certainly want to be unusual though.

Yes, Esther, I agree with Garcia, and just wanted to clarify when I said "I never doubted it", I was referring to myself. And I also agree with Robin's suggestion of trying CBT/GET or other physical activity. I do wish you well, as I think you seem quite lost in a sad sort of way.

To me, a prior certainty in your own sanity seems more likely to be indicative of madness than an acknowledgement of the difficulty of coming to such a conclusion.
 

jeffrez

Senior Member
Messages
1,112
Location
NY
LOL. But both sides are trying not to engage with the other’s delusions!

I think this is unfair on whoever is genuinely demented: I feel that I have a responsibility to them to show that their beliefs are unreasonable – just as they should feel a responsibility to explain to me why they think my beliefs are unreasonable. Otherwise we just segregate into little sub-groups, all feeling smugly superior to the deluded others.

But lab tests that are abnormal and that are consistent with the scientific literature show that those are not delusions. The psychologizers refuse to accept the fact of laboratory data and tests that show they are wrong, which means they are irrational.

Or is it actually the case that my blood is now "delusional," too? Is my white count really 9, but it only "thinks" it's 1.9? Does my blood need CBT to understand that it really has more cells than it thinks it has? Are the lab techs who report all the abnormal findings also "delusional?" Is the WBC or the NK cell function actually normal, but because of their delusion they keep writing in the wrong number, test after test, year after year?

Right - the whole world is "delusional," but the psychologizers -- who ignore abnormal laboratory tests and 4,000+ studies of scientific research that corroborates the significance of the abnormalities -- have it all figured out. How convenient for them. What geniuses these people are. They have figured out a way for abnormal laboratory results to actually mean you are "normal." What do we need lab tests for, then, if everyone who has an abnormal number is actually fine, and just needs CBT to overcome what they think ails them? Abnormal tests are meaningless according to the psychologizers -- when they want them to be. How convenient.

In fact, these people are completely ignorant -- the source of their delusions -- and they then project their ignorance onto us in the form of their psychologizing beliefs. It's no different from when people were poisoned by contaminated rye bread, developed ergot alkaloid poisoning, and were called "witches." The psychologizers of the time had no idea of brain chemistry, serotonin, ergot alkaloid poisoning, or anything related to neurobiology, so they projected their ignorance onto the victim, branding them "witches." And that's exactly what these psychologizers do. It's no different at all, except to the extent that they are actively ignoring actual scientific data and laboratory results to maintain their fixed, false beliefs.

So that is what's called a delusion, and the evidence points to the fact that they are delusional. The blood, the lab techs, and the scientists performing the scientific research aren't all delusional. What they all say is corresponding to observed reality. The psychologizers, by contrast, are ignoring that observed reality to maintain their wrong beliefs, which is called delusion and psychosis. Trying to turn that back on the PWC is just a projection of their own ignorance and delusion. The observable facts prove it.
 

free at last

Senior Member
Messages
697
Why is it that people directly affected by the illness can have self doubt, even though there memory tells them its not possible to get temperatures of over 101 f just because your a bit panicky or anxious. Once that happens enough times, then clearly one is fighting infection. Not mental illness. But yet psychiatrists of the all in your mind school, never have doubt about your illness, They are so cock sure there right ? even though they cant get in your body and tell 100% that indeed they are right.

Why do you think they are so sure of there beliefs to generalize over every single patient they see ?

Because they have to be

. If they ever say sorry im not sure anymore in this particular case what this could be, then there theorys fall and crumble to the floor. I bet my case was ignored by simon, ( put to one side ) while a more easily explainable case would be used to bolster there theorys. You cant ignore the hard core physical cases, because it dont fit in, If there is uncertainty, then it all becomes a guessing game. Ahhh now we know why they do that.

They have to be 100% sure that its all in our heads, because if there not, then they cant generalize between patients anymore, and there theorys become unworkable, very clever Simon, so very clever of you

where do they ever say I THINK ITS IN YOUR MIND BUT IM NOT POSITIVE, what then if said such illness changes somewhat, the tempertures stop, but all the other symptoms you were getting with the temp, continues exactly the same, physical symptoms like burming chest irratation, weakness, sweating while asleep. nausea, pale complexion, ( that is not there during remission ) Private parts shrinking, when really ill. yea i did say that. Then the shrinks will say,

OK when you was getting the temperatures you was ill, but when they stopped, you was just mentally ill from that moment on.
Come on give us a break, by now you get to know all the physical things that were happening to your body when the temperatures were happening, Its a bit unlikely the sever chest irratation that continued without the temps ( but had it with the temperatures ) is suddenyly all in your mind lol. Simon would have us belive it is, Whats the point in talking with that Person ? Damm pointless

If any psychatrists are not this stupid then maybe its worth a chat but otherwise, you guessed it DONT BOTHER.

When Sophia Mirza was sectioned, i would be interested what Psychaitrist was asked for there opinion on her in the court. ( i assume there was a hearing ? ) Could have been Simon, but i dont really know. ? may have been someone else,

Who ever gave there oh so perfect 100% cock sure assesment of her, Probably should be charged with manslaughter. As long as this debate continues like this, then theres the danger this will happen again. No wonder we want Judy M to be right, No wonder we want the WPI to be right, What else have we got right now. I changed my mind its a bad idea, we need to fight these mothers with Science, And only then will we be sure that another poor innocent young girl wont be misdagnosed, and treated so shamefully. If anyone else treated another human being like that, they would be arrested, These people are still FREE, Its just wrong, its just all Wrong. I pray the WPI are right, its time these people got struck off or discredited.

As for me i hope they all catch ME and then they can section themselves.

lets never let them forget what they did to her. Debating over coffee, doesnt seem enough does it. Do a good job Judy plz
Mark thank you for your kind words.

Sorry about my typing skills
Neil
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
Esther12, pretty much every single one of your posts seems to indicate that you know nothing of the difference between CFS and CFIDS. They are two entirely different entities. CFS was a condition often caused by people who were just tired. The fatigue could come from anywhere. That term was wrongfully used to phase out CFIDS. CFIDS is Chronic IMMUNE Dysfunction, and it is known to be caused by real physical causes with real tests that prove that. I think you have latched onto the CFS name and you enjoy provoking a community of genuinely physically ill people or you wouldn't be here. You've already stated that you enjoy inciting debates (fights) in several communities. By your own admission, you are a trouble maker that should not be encouraged.

Many of the people here got sick after a viral illness. Many of us are also advanced Lyme disease. We suffer daily with many real physical symptoms including high white cell counts, Hashimoto's Hypothyroidism, severe Post Orthostatic Tachycardia during which our blood pressure drops alot and had been fully documented as well as our irregular heartbeat from it. And a whole host of other things that are REAL. How dare you come into a community of people who suffer more than most people can imagine in a life time and bring up that they may only think they are ill.

You fully ignored my other post to you suggesting you start your very own forum some place else because you want a captive audience here. You enjoy causing trouble and you seem to have now targeted a community of very physically ill people to do so. There is no other reason for you to be here bringing up this subject. There is no debate here. The people here are physically sick, there is nothing to debate about that. There is however, something to debate when it comes to a person who enjoys creating trouble and upsetting a group of very physically ill people.
 
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