Why do patients with ME have issues with "psychological factors"??

percyval577

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Very nice quite at the end:
"Tuberculosis, Multiple Sclerosis, Parkinson’s etc. These were all once considered diseases caused by or perpetuated by a patient’s psychological or behavioral factors. These theories were solely based on the beliefs of quite influential academics. That was the reason why these theories were considered true but as history taught us, they were completely unfounded. Just as we still see happening with ME. Something really needs to change and you know it will. The more biomedical research will progress, the more the current model for ME will evaporate. It will make room for proper psychological support that will be in line with what patients suffering from this disease do indeed need. I’m just not really sure why it’s not, at a persistent speed, happening as we speak? Seriously what’s the hold up?"

I know that I am mentally in peace with myself, accordingly i have experienced this at different stages of my life. I don´t let destroy any selfconfidence by any "authority" who needs to be "selfconfident" when doing their job.


It´s rather a lack of humanity and trustworth communication. And a serious one if one only could consider that some of us are technically not able to be in peace with themself. In my case there was an atomic bomb exploiding in my head. However, such a lack is made by the society in the whole (in some sense).

One might joke that such theories of psychosomatic disorder in fact consider the inventers and some disciples of such theory themself as being "well in the most important" (their soul), whereas these ill people "are not". And properbly it´s not only a joke ...
 

Moof

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Yes, it's outrageous that some people who have poor mental health alongside their ME have, in effect, been debarred from getting treatment for it, simply because they're worried their physical ill-health won't then be taken seriously. The so-called 'professionals' who've created this situation should be deeply ashamed of themselves.
 
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Right, no one disputes that psychological factors can influence how we feel on a day to day basis, the key is that cognitive or behavioral factors are not the central perpetuating factors.

If CBT was delivered as a supportive/adjunct therapy, rather than promoted as leading to remission (without objective evidence of a reduction in disability), then views in the community would be far less polarised.
 

alex3619

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they're worried their physical ill-health won't then be taken seriously
Its not just being worried, some have been so badly treated by such "help" that they will never consider it again. I think Nancy Klimas once said she sees many cases of PTSD in us because of how the medical profession treated us. Examples include throwing a child into a pool to force them to swim and reveal they were not really sick.
 

alex3619

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If CBT was delivered as a supportive/adjunct therapy, rather than promoted as leading to remission (without objective evidence of a reduction in disability), then views in the community would be far less polarised.
I have no problem with classical CBT if it suits the patient to have it. The CBT variant used in ME, particular with GET, is abominable. I have undergone classical CBT myself, and though it did not help much it wasn't a complete waste either.
 

Moof

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Ironically, the most professional medical treatment I've ever had was from psychiatrists and psychologists. I had severe weight loss caused by gastroparesis when I first developed ME in my teens, and at the time (mid-1970s) anorexia nervosa was being talked about a lot. My GP was determined this is what I had, and referred me to four different mental health services.

All of them discharged me after a couple of sessions, saying that I showed no symptoms of eating disorders or mental ill-health, and the last one wrote back to my GP asking him to stop referring me to clinics in different areas of the city in the hope of getting the diagnosis he favoured. They were absolutely great, and whilst I was pretty baffled as to why I'd been referred to them, seeing how they worked was an interesting and positive experience. If all psychiatrists and psychologists worked to their standards – assessing the patient as they found them, without applying politically-influenced theories – we'd never have had an issue.
 

alex3619

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If all psychiatrists and psychologists worked to their standards – assessing the patient as they found them, without applying politically-influenced theories – we'd never have had an issue.
Yes. The issues in psychiatry can mostly be resolved if psychiatrists, as a profession, raised their standards to a high level.

In case anyone is unaware, I was first diagnosed with CFS (Holmes) by a psychiatrist. I think I was rediagnosed like 3 extra times, but I have no clear recollection of that any more.
 

sb4

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I have had a similar experience to @Moof. I've been refered to 3 psychiatrists and all 3 seem to have agree'd that I'm relatively normal psychologically and that my symptoms seemed to be physical. Hasn't stopped some doctors from dx me with anxiety or only looking to treat my mood, of which I explain, again and again, is not a problem.
 

percyval577

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Hasn't stopped some doctors from dx me with anxiety or only looking to treat my mood, of which I explain, again and again, is not a problem.
One doctor said to me that I might proof it (???). I didn´t know that there ever could be a proof for it. So, the chance to "proof" it right in the moment was to say that this is - of course - not possible.

But if you are only a patient, and the doctor can - of course - treat everything ... But it is needed to say that such mind is dangerous.
 

alex3619

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I didn´t know that there ever could be a proof for it.
First, there might be soon. However there is a way right now to get close to proof.

CFS and ME are defined by collections of symptoms. You cannot prove ME or CFS. You can prove individual problems that match those symptoms. The list I like to start with, and this is only up to 1954 so there are lots more, is with a tilt table test, a quantitative EEG, a repeat CPET and a sleep study. Mass spectrometry belongs on that list, but its not validated yet.

So you can prove the collection of symptoms to a significant extent, with objective evidence. However this has major issues that have been discussed elsewhere. When you look at diseases with that collection of proven problems, you wind up with only two diagnostic choices ... CFS or ME.

Right now we are looking at right heart filling issues, low blood volume, circadian disorders and probably a great many more as having tests that show objective abnormalities. With a bunch of such findings behind a patient it becomes very hard to dismiss that a patient has a severe physical disorder, regardless of whether or not they are willing to put a name to it.
 

Judee

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Tuberculosis, Multiple Sclerosis, Parkinson’s etc. These were all once considered diseases caused by or perpetuated by a patient’s psychological or behavioral factors.
I even saw a movie from the '70's a while back where the doctors were arguing if a child's asthma attacks were fully psychosomatic or only partially so. :mad:

It possibly could be a comfort to know that other diseases have gone through this process but it is not.

What really frustrates me is how doctors can state something definitively when they know research and science is always progressing and being reevaluated. We really know so little about the body even at this stage to make such all or nothing statements but still they do so constantly. :jaw-drop::bang-head:
 
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percyval577

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@alex3619, thank you for the intervention,

but it was meant the other way round: I should prove that I have no psychological problems.
You get the point, I guess.

It turned out later then that the doctor had never heard about me/cfs, and I was only on the way to recall this disease.
It might have been a trick to find out what it is about the patient. But I am afraid this adroit skill then had mixed up with a real confusion about human nature (and I was again not a member of the society).
 

alex3619

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I should prove that I have no psychological problems.
If all the symptoms, or at least the vast majority, are proved to be physical, there are only spurious grounds for claiming psychological problems. The issue with proving you do not have psychological problems is the criteria for psychological problems is so broad that nearly everyone in the population could be said to have psychological or even psychiatric problems. The criteria are not objective and are too inclusive.

That is not to say we do not have cognitive problems, and sometimes we do have psychiatric symptoms, we are not immune. Its just that its easier to show we have the full range of ME symptoms, with objective tests, than to fight things on problematic psychological grounds.

One psychiatrist in court said once that if you had a lot of psychiatrists giving their own diagnoses they would all be different.

PS For example I would qualify for a diagnosis of dyscalculia, which is considered psychiatric, yet is a standard ME symptom. Its simply sufficient cognitive impairment to damage capacity to do math.
 

percyval577

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I try to answere to your interesting and difficult issues (because I really would like to ...).
The issue with proving you do not have psychological problems
is the criteria for psychological problems
is so broad that nearly everyone in the population could be said to have psychological or even psychiatric problems.
It would be denying the human soul if you would need to prove anywhere that you are fine (without psychological problems), because being fine is always a task - and within human communication.
Therefore it could/should rather only be recognized as a joke to prove that you havn´t any "problems".
Given the huge complexitiy of the human soul there are of course every then and when some "problems".

However, you are (and ever will be in a basic sense) right to say "it would be so broad". And this seems to me the core "task" to humans, to solve any "problems" (and thereby indeed steadily such abstract problem).

But the question is of course if you need to mention any problems because they would be serious enough to cause a state of "illness" (which would be neccessary here but also of limited power). Maybe easlily you make a mouse to an elephant.
And here my doctor - typically in either way I think - went miss.
1.
Assume that the doctor knew that if I would have tried somehow to prove that I have no problems, the doctor could - in their view of my complaints - immedialty have said: "He needs a psychologlist, because he doesn´t understand/feel the human nature which consists of a perpetuation and not of a block ´being fine (without problems)´". But then, as I refused to prove anything, the docotor said to themself: "Ok, with any psycholgist here is nothing to gain. We need to apply tougher methods."
It may sound like a joke, but this is how it ran.

2.
It might also be possible that the docotor really meant that I should prove such nonsense. And I am from germany, so with a small chance it might be even more considerable.

Anyway, it needs to be pointed out I think that the mentioning of - inferior, normal, productive - problems is contraproductive (and can lead eg to what in english is called "selfconsciousness", great word btw). So, that does indeed not mean that these/such "problems" wouldn´t be of importance. It´s rather a matter for culture ... culture needs to be recognized as a task, which may lead again to selfconsciousness ... it´s a task without any end.
... the criteria for psychological problems is so broad that nearly everyone in the population could be said to have psychological or even psychiatric problems. The criteria are not objective and are too inclusive.
....
Its just that its easier to show we have the full range of ME symptoms, with objective tests, than to fight things on problematic psychological grounds.
 
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Wolfcub

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....Because mind and body can not be truly separated. Goodness knows why western medicine has split these apart widely. You either have psych. issues, or you have physical issues, or if neither can be figured out and slotted neatly into categories, then you might have "psychosomatic" issues!

We are living systems with mental/emotional/physical relationships constantly going on. Feel sick? You are going to feel "down" too. Feel "down"? You may not have much appetite....etc. They are all linked.

One day medicine will accept that we are whole beings not just parts to be split off and analyzed separately in fragments. Goodness knows when that will be.

It's long been known, for instance, that a dose of the flu can make someone depressed for a certain time afterwards. It's something that often comes with the flu. Doctors can understand that. So I can also see that something that drags down the whole system physically for an extended time, can have effects on emotions and thought processes.
 
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I'm a psychologist. I consider it unethical and dangerous to discount a physical illness and treat it as a mental health problem. I have ME/CFS and I get really pissed when people ask if I'm treating my "depression". I'm not depressed; I'm sick. I have patients with cancer. I don't analyze their illness; I help them deal with the consequences of it.
 
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percyval577

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What really frustrates me is how doctors can state something definitively when they know research and science is always progressing and being reevaluated. We really know so little about the body even at this stage to make such all or nothing statements ...
:thumbsup: And what is it. Is it megalomania? Is it lack of assurance? Is it crime? Is it negligence?
One psychiatrist in court said once that if you had a lot of psychiatrists giving their own diagnoses they would all be different.
... maybe we will never know.
 
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alex3619

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I'm a psychologist. I consider it unethical and dangerous to discount a physical illness and treat it as a mental health problem. I have ME/CFS and I get really pissed when people ask if I'm treating my "depression". I'm not depressed; I'm sick. I have patients with cancer. I don't analyze their illness; I help them deal with the consequences of it.
:balloons::)