New study finds factor that dictates level of pain and fatigue in ME.........*******!!!!!!!

[peggy-sue]

There's also Susan (eeeeek!) Blakemore. Studied "the paranormal" for years and years before admitting there's nothing to it and it's a waste of time, effort and resources

 

[user9876]

I find myself wondering what other parameters folk can think of that might correlate with sets of symptoms.

Height? Birthday month? Birthday year? The time of day? The FTSE index?
The number of freckles on the left-hand side of your nose?

Invent enough personality traits and some of them will correlate with something. Law of averages!

I wonder if there is a different effect. It can be hard to get a diagnosis of ME many GPs just send people away as they don't know what is wrong. So often to get a diagnosis and see people claiming to be experts you need to be persistant and have an expectation that doctors will do their job. You also need a certain level of intelligence and education to navigate your way through an unco-operative health system.

So they see some bias in the people they are seeing and instead of thinking why this might be they assume it is the cause. My guess is that this assumption is due to their underlying belief that unexplained disease must be all in the mind. They then set out to 'prove' their underlying biases with disfunctional experiments.

 

[Marlène]

Just look at the names who did the "study": Prof B Van Houdenhove who is supposed to be retired. He advices the belgian government and social security. This kind of people should be in front of justice.

I suffer daily trigeminal neuralgia since the age of six, that is 35 years now and thanks to these psycho guys I suffered needless for 33 years. Children are not supposed to have pain unless they don't like school, are abused, ... which was not the case but nobody wanted to take action. It is only when I ended up in a wheelchair a neurologist was willing to prescribe medication. My life has changed drastically.

So now Van Houdenhove is saying people suffering are not well adapted again? He should really retire and stop working. Having a degree is definitively not a guarantee for not talking nonsense.

Pain is something that should be treated by neurologists.

 

[Hip]

Though the conclusions of this study are ludicrous, based on the idea that there are psychogenic causes for physical disease — an idea more appropriate to witchdoctors and ancient tribal medicine than modern 21st century science, the empirical finding of the study (namely that perfectionist traits are associated with ME/CFS) is likely valid, and this finding may be of relevance under an alternative interpretation. I will here offer such a alternative interpretation, based on an infectious etiology for perfectionism, as follows:

I can definitely attest to the fact that I had perfectionist traits long before I developed ME/CFS from a respiratory virus I caught.

I was always well aware of my perfectionist traits, and though they served me well in my professional life, I often speculated to myself what might make a person become something of a perfectionist. In my case, I concluded that adopting this perfectionist disposition was my strategy for coping with the bad memory and ADHD I always had. Perfectionism is an exaggerated focus in getting the details right and well-organized, and I believe this focus on detail and organization helps you to learn and remember the details when you have a bad memory and slow learning.

Now, given that many mental diseases and mental conditions such as ADHD are being linked to biochemical causes — particularly of late to infectious and brain inflammation-mediated causes — this makes me wonder whether my bad memory and ADHD (which led me to become a perfectionist) were themselves underpinned by some infection and inflammatory condition, much in the same way as ME/CFS is strongly linked to infectious etiologies and inflammation.

So, if I already had some infectious pathogen in my body, driving my bad memory, ADHD and perfectionism, this same pathogen might also predispose me to later acquiring ME/CFS. This would explain the statistical association between perfectionism and ME/CFS found in the study.

This alternative and better (even if I say so myself!) interpretation of the study's findings nicely explains this statistical association between perfectionism and ME/CFS in terms of them both being due to physical causes, most likely infection and brain inflammation.

 

[Hip]

As a quick survey: who here with ME/CFS would say that they had or have perfectionist traits?

 

[peggy-sue]

I do. I had an alcoholic narccissitic mother. Nothing to do with infection.
Everything to do with nothing I ever did was good enough.
(I come home from school with top marks in the class, 98%. I get; "What happened to the missing 2%?")
It served me well as a lab technician. My work was incredibly accurate.
It serves me well with my interest in art. I can spot flaws, I can recognise an artist's "hand" rather than have to look for a signature.

 

[Esther12]

I do. I had an alcoholic narccissitic mother. Nothing to do with infection.
Everything to do with nothing I ever did was good enough.
(I come home from school with top marks in the class, 98%. I get; "What happened to the missing 2%?")
It served me well as a lab technician. My work was incredibly accurate.
It serves me well with my interest in art. I can spot flaws, I can recognise an artist's "hand" rather than have to look for a signature.

Sorry to hear about your troubles Peggy-Sue.

In some ways you sounded the opposite to me.

I thought my parents praised me too much (it was a bit annoying, but most parent are about their kids, and certainly preferable to them being alcoholic narcissists). I was happy to aim for Bs, and if I got much higher than the minimum required for an A I'd be annoyed that I'd done too much work. For our science GCSEs, our science teacher was going around and helping everyone in the class improve their marks. The person next to me was trying to move from 39/40 to 40/40. She got to me and said: "You're probably not that bothered are you?" "I think I've done well enough." I got to spend the hour drawing cartoons while everyone else worked away. (Looking back... I do cringe at how I unconcerned I was about my results. I was just confident I could get a mix of As and Bs, and that was all I thought I'd need).

In most ways I'm not at all perfectionist, but there are areas where I seen to have unusually high standards for myself. I do think that I try to be unusually morally honest (which is not the same as virtuous - I just don't like bad moral arguments). I really dislike pragmatism, and that could be seen as a form of intellectual perfectionism? Really though, I just don't like quackery. Actually - it could well not be that I have unusually high standards, but that there is an acceptance of unusually low standards around CFS. It's only since I've started reading lots of psychosocial CFS research that I've come to think of myself as being unusually demanding in this area.

More generally: I've found that some psychological questionnaires for assessing perfectionism are really poor at taking account of the problems caused by ill health. eg from memory: Someone agreeing with the statement 'I am often unable to do things as well as I would like' is seen as evidence of their self-critical perfectionism, when it could just reflect that someone is suffering from health problems which often prevent them from doing things to even quite low standards. With CFS, where some think it's morally acceptable to encourage patients to believe that their loss of capacity is a result of deconditioning or a fear of exercise, and there are a lot of prejudices related to this within society, it is particularly likely that patients will not have been able to lower their standards in a way which accounts for their reduced capacity - but I don't think it's sensible to view this as a result of perfectionism.

 

[peggy-sue]

Oooh, I have exceptionally high standards too! I don't need to look at the price of something. If it's the thing I like - it will be the most expensive. Give me cashmere over acrylic any day. Quality over quantity, any time.
But I don't think that's got anything to do with being a perfectionist.
(I'm just a snob. )

 

[Marlène]

I became a perfectionist some years after I got sick. Does that count too?

My life has become so small, so limited, living in one single room, ... I just want things to be perfect now. Life is precious, it can be all over tomorrow. Why should I accept a second hand diagnosis of some overrated psychiatrist whose only interest is to prove he's right and cash in money from the government?

These people are the reason I was unable to raise my children for years, lost my job, my income, my social life, ...
These people should better be perfectionists themselves in order to deliver some serious research papers.

 

[Esther12]

These people should better be perfectionists themselves in order to deliver some serious research papers.

Trudie Chlader has been promoting the perfectionist thing for CFS. She's the one who, following PACE, was describing her treatments as getting patients as 'back to normal' even when they were still more sick than was needed to be classed as suffering from 'severe and disabling fatigue' according to the criteria used at the start of the trial. I can't help but think: "Be more perfectionist Trudie! Stop being such a quack."

I think that most people would recognise the standards these CFS researchers set for themselves is not high enough.

 

[biophile]

I just posted this on another thread :

There is a difference between "perfectionism" worsening the management of an illness vs patients with that illness being generally characterized by perfectionism. IIRC for CFS research, evidence for the former is not that convincing, and the latter has already been debunked.

Good points Esther12. Considering the poor backwater standards in psychological and psychiatric research on ME/CFS, perhaps some researchers in these fields could benefit from a little more "self-critical perfectionism".

 

[peggy-sue]

There might be some trouble with chalder's interpretation of perfectionism.
I mean, she's qualified as a nurse, but via certain machinations, avoiding any qualifications or work to justify it, she managed to progress to "doctor" and now to "professor".

You'd have to have pretty low standards to accept these qualifications under those circumstances.

The psychs really are good at relabelling things to make them appear to be something they're not, aren't they?

 

[Marlène]

@ peggy-sue
Isn't that called manipulation?

Information control
1. Use of deception

a. Deliberately holding back information
b. Distorting information to make it acceptable
c. Outright lying

Thought Control
1. Need to internalize the group’s doctrine as “Truth”

a. Map = Reality
b. Black and White thinking
c. Good vs. evil
d. Us vs. them (inside vs. outside)​

2. Adopt “loaded” language (characterized by “thought-terminating
clichés”). Words are the tools we use to think with.
These “special” words constrict rather than expand understanding.
They function to reduce complexities of experience into trite, platitudinous
“buzz words”.
3. Only “good” and “proper” thoughts are encouraged.
4. Thought-stopping techniques (to shut down “reality testing”
by stopping “negative” thoughts and allowing only “good”
thoughts); rejection of rational analysis, critical thinking, constructive
criticism.
5. No critical questions about leader, doctrine, or policy seen
as legitimate
6. No alternative belief systems viewed as legitimate, good, or
useful

4. Excessive use of guilt

a. Identity guilt

1. Who you are (not living up to your potential)
2. Your family
3. Your past
4. Your affiliations
5. Your thoughts, feelings, actions

b. Social guilt
c. Historical guilt​

5. Excessive use of fear

a. Fear of thinking independently
b. Fear of the “outside” world
c. Fear of enemies
d. Fear of losing one’s “salvation”
e. Fear of leaving the group or being shunned by group
f. Fear of disapproval​

6. Extremes of emotional highs and lows.
7. Ritual and often public confession of “sins”.
8. Phobia indoctrination : programming of irrational fears of ever
leaving the group or even questioning the leader’s authority. The
person under mind control cannot visualize a positive, fulfilled
future without being in the group.

Source: http://freedomofmind.com/Info/BITE/bitemodel.php​

 

[alex3619]

Oooh, I have exceptionally high standards too! I don't need to look at the price of something. If it's the thing I like - it will be the most expensive. Give me cashmere over acrylic any day. Quality over quantity, any time.
But I don't think that's got anything to do with being a perfectionist.
(I'm just a snob. )

Hi peggy-sue, its not about snobbery its about common sense. You can buy a cheap item, replace it umpteen times ... or buy an expensive (and quality, not just overpriced) item and it lasts decades. I like things that last. Bye, Alex

PS Marlene, I don't know how reliable Steve's info is, but it certainly interesting. Manipulative strategies in psychobabble is one of the things I am researching. They are mind manipulators by trade after all.

One of the first things you learn in systems theory is the map is not the territory. I have a particular dislike to black-and-white-no-grey and dogmatic thinking.

 

[alex3619]

The psychs really are good at relabelling things to make them appear to be something they're not, aren't they?

Relabelling and redefining (the other way to change things) is their modus operandi. That will be a huge section in my book as I list the many many many times they have done this.

 

[Holmsey]

I've just had a mail through from the Action for ME website indicating that there is backlog in moderating comments due to holidays and the like, however this has now been resolved with respect to those comments posted against this paper.

 

[biophile]

I have a particular dislike to black-and-white-no-grey and dogmatic thinking.

There are also problems involving the grey: false middle ground. I do not strictly mean the middle ground fallacy (truth is the compromise between two positions), but where a position is being falsely presented as middle ground.

For example, the ME/CFS controversy is often simplistically portrayed as psychological vs organic. Proponents of the cognitive behavioural model (CBM) of CFS present their views as an enlightened or reasonable middle ground between these two "extreme" positions. They essentially claim that ME/CFS is a psycho>somatic illness, where functional physical symptoms are primarily perpetuated by cognitive and behavioural factors. Technically it would be a strawman to interpret this position as the extreme psychological position ("pure" mental illness). However, as the latter position has no legitimate support and has been dismissed by almost everyone involved, it is not really a contender in the debate. In other words, the psychological pole of the controversy, by default, falls to the CBM of CFS.

Proponents of the CBM present themselves as transcending above the controversy of naive dualism. They apparently believe* the controversy is about the extreme positions of psychological vs organic, and the stigma of mental illness (* this could be a diversion tactic, to avoid answering to the criticism, rather than a genuine interpretation). Lloyd and van der Meer's response to the PACE Trial controversy was a classic recent example of this. Whereas in reality it is the CBM and its proponents which are being heavily criticized for the lack of acknowledgement for organic pathology and the over-emphasis on cognitive and behavioural factors. The ME/CFS controversy really involves the CBM vs subtle organic pathology which may or may not involve a limited degree of other types of factors seen in other chronic illnesses.

 

[alex3619]

Hi biophile, I prefer to describe their model as the Dysfunctional Belief Model, rather than CBM, for which CBT and GET are therapies. The reason I do that is so most of the arguments against them are not targeting CBT or cognitive approaches per se, but the particular hypothesis they use to justify a cognitive approach.The arguments do not necessarily apply to CBM generally, only to the specific variant.That variant is however captured by the concept that they are discussing cognitive and behavioural factors that they claim are perpetuating ME or CFS.

They claim they avoid naive dualism, but the act like people who are extremely dualist, and their arguments follow from a dualist position. Its sophistry. I do think your comment that this is a diversionary tactic is likely to be correct, but assigning motivation is always problematic. I can discuss what, that is the effect is diversionary, but never be certain as to why they are doing it.

I think many people with long term CFS and ME are badly in need of appropriate psychiatric/psychological assistance. This is unfortunate because the failure of the psychiatric profession to adopt an evidence based approach (as opposed to their claim of evidence based medicine) has alienated the patient population, and understandably so. Psychological and psychiatric strategies do not appear to address the primary issues in ME or CFS, but instead would be useful to enhance management. By trying to claim they can affect causation, and badly failing to demonstrate this with research, they are missing their primary opportunity to help.

Attention is further diverted from this by their claim that we resist treatment because of psychiatric stigma, a claim which I cannot see has any basis in fact. Is it possible that they do see patients with idiopathic chronic fatigue who are afraid of a psychiatric label? I think its possible, that would require investigation. However based on myself and all the patients I have come into contact with, I doubt it applies to more than a small minority, and most of those probably do not have ME.

Their argument is black and white because they do not provide caveats, nor attempt to deal with alternative or condradictory findings. They simply ignore them, or use ridicule to refute them rather than evidence. Defence of their position is thus political and not scientific. Now they do appear to make concessionary comments, but then proceed to ignore them in their studies. They are not internally consistent.

They claim to practice biopsychosocial medicine, but in practice they appear to use eclectic psychiatry of the most extreme kind.

Bye, Alex

 

[biophile]

Hi Alex. Good points. The CBM of CFS is simply applying classic CBT principles, and traditional concepts of functional illness, to ME/CFS. It is not really innovative or original. I agree that motivations are too speculative. However, their dismissal of criticism as simply being borne from naive dualism and the stigma of mental illness, at the very least is a strawman which displays their own ignorance. As they do such a poor job at addressing the criticism (poorer than what would be expected from people with their level of education and academic position), diversionary tactics are suspected.

Regarding the "resistance" to psychiatric treatment, their views may vary on that issue, but it is my general impression that they tend to view ME/CFS patients as characteristically-prone to somatic attribution of their symptoms even when "stress" etc are allowed as contributory factors. So patients are more likely to insist that they are physically ill rather than mentally ill. Unsurprising when a virus apparently triggered their symptoms and they experience it as a physical illness. However, there are also speculations that patients lack psyche-soma differentiation or lack the insight to detect whether their symptoms are the physical effects of psychological issues. The CBM of CFS focuses more on the supposed perpetuating factors than the initial causes, which is a classic principle of traditional CBT.

I think patients just want a diagnosis which matches their symptoms, one which has some explanatory power as well as descriptive power. A patient is not going to be satisfied with a diagnosis of primary MDD or GAD if depression or anxiety is not their main problem but ME/CFS symptoms are. I guess it is possible, as you said, that some patients with ICF do not want a "psychiatric label", but Wessely's own research suggests that CFS patients in general do not have particularly negative views of psychiatry. He has also stated that the patients he sees do not criticize his approach, it is the fringe element and patient advocates who do. Sharpe made a similar comment about PACE Trial participants vs critics.

What is probably happening is that most new patients meeting broad CFS criteria are rather open about possible causes and solutions to their illness, including psychosocial factors. However, the rarer patients who meet stricter criteria and remain ill, become increasingly skeptical or frustrated as the years roll by, and with the CBM/DBM of CFS when it fails them or they discover that it is at the center of the status quo response to ME/CFS which failed them, and finally end up becoming staunch vocal critics against it, even if they still accept a psyche-soma connection. That is how I myself gradually turned from a mind over body idealist into someone who would now be regarded as one of the "fringe radicals" for analyzing and critiquing the CBM/DBM of CFS and the evidence base of CBT/GET. I was somewhat impressed with the evidence at first, but probing deeper changed all that.

I highly doubt that patients just wake up ill one day with highly critical views. There is a whole process involved, and coverage of the controversy rarely takes into consideration this context, or the years of suffering and analysis which have shaped peoples' views from ordinary citizen to (pseudo) "fringe radical".

 

[alex3619]

Hi biophile, I mostly agree with your analysis. The rest I am merely unsure of, I don't disagree with you.

"there are also speculations that patients lack psyche-soma differentiation or lack the insight to detect whether their symptoms are the physical effects of psychological issues" ... this made me laugh. It is of course what I consider the problem with most psychosomatic medicine - the "experts" can't tell them apart, I think patients often have more insight than the "experts". The "experts" wish to infer psychological cause on the basis of an hypothesis that has never been verified and has been resoundingly refuted on a case by case basis an extremely large number of times. It would be an inductive fallacy to infer that their repeated resounding failures mean they could never be right, but my position on this is that they are expressing an unproven hypothetical model of illness that at best must be considered experimental and controversial.

As soon as patients realize a lot of the psychiatry they are being told is babble, they react accordingly. This is not surprising. When you realize that multiple "experts" have consistently and repeatedly lied to you on issues that are central to your health and wellbeing, trust is broken. To regain that trust will require an extraordinary level of integrity and solid science ... at least for me it would. I still see no signs of either.

CBT is basically brainwashing: selective alteration of cognitive processes. Used carefully its a valuable tool. Used inappropriately I see it as dangerous. It necessarily requires cooperation from the patient. If its being used inappropriately, then it follows that inducing, persuading or coercing the patient is an abuse of power, and a violation of medical ethics. The question though is how do you prove one application is inappropriate, and another is appropriate?

I have heard/read Wessely state that CFS patients are afraid of psychiatric stigma, if I recall correctly. I am aware, however, that what they state at one point is not what they state at another. Because I have not yet done timeline analyses of these I do not know if this represents a slowly evolving viewpoint, or a vascillating viewpoint that varies with the audience. Its something I hope to investigate in a year or two. It may also vary person by person.

Bye, Alex