King's College: Understanding Attention difficulties in Chronic Fatigue Syndrome/ ME

[Firestormm]

It would only serve to perpetuate the pile of shit that is the BPS model. Patients should unite to boycott it, and educate other patients to do the same. It only continues to exist because patients are desperate, naive, or get tricked into it. The BPS model deliberately uses misinformation so it's easy to mistake it for a useful approach. For example, on the CFS site of King's College, the words CBT and GET don't appear anywhere, or here in this "study" which looks a lot like they're not trying to understand attention difficulties but trying to demonstrate that CFS patients react negatively to certain words, which will undoubted be presented as causative factor. And in the case the data doesn't support the conclusion, they will torture it until it confesses.

I wonder if this constitutes a personal attack as I completed the survey as I said above Am I desperate, naive, or maybe I was 'hoodwinked'.. hmm... I shall go consult my Ouija board about the possible motives behind this survey as well as ponder for hours why indeed I did chose to complete it: NOT! Jees.

I am out of here.

 

[user9876]

I think there is an issue in the way the structure the scales. Generally, symmetric scales (with odd numbers of responses with the same number above and below a neutral value) are believe to be best. Likert items generally take this form. Sometimes with Likert items a forced scale is used in that it doesn't allow a neutral answer so as to force the person answering a question to give an opinion.

Here though there is one answer below and multiple above a neutral value which amongst other things means that distance between different answers will be different and answers cannot be used with a lot of stats techniques. Assigning numbers and quoting the mean value becomes wrong the mode (most common) is ok though.

 

[chipmunk1]

http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/attitudes-and-cancer

group support, individual therapy, mindfulness, and relaxation techniques can be used to help reduce distress and cope with the emotions that come with a cancer diagnosis.

Personality traits and cancer
For many years there have been those who were convinced that people with certain personality types were more likely to get cancer. The common thought was that neurotic people and introverts were at the highest risk of cancer. Along with that, some believed that personality affected the outcome of cancer – the likelihood that a person with cancer might die.

Most of the study results on the subject tended to show no link between personality and cancer, but a few seemed to support the idea. Experts noted that many of these published studies were smaller, poorly designed, or not very well controlled. This means that their results were more likely to be due to bias or random chance. Also, some journals tended to publish the studies that suggested there was a link and reject those that showed no link. People are then more likely to read or hear about the few studies that seemed to show a link but not hear about those that didn’t show any link.

In 2010, the largest and best-designed scientific study to date was published. It looked at nearly 60,000 people, who were followed over time for a minimum of 30 years. This careful study controlled for smoking, alcohol use, and other known cancer risk factors. The study showed no link between personality and overall cancer risk. There was also no link between personality traits and cancer survival.

Does a positive attitude affect cancer?
People with cancer and their families may feel guilty about their emotional responses to the illness. They may feel pressure to keep a “good attitude” at all times, which is unrealistic. This feeling of pressure can come from within themselves, from other people, or both. Sadness, depression, guilt, fear, and anxiety are all normal parts of grieving and learning to cope with major life changes. Trying to ignore these feelings or not talking with others about them can make the person with cancer feel lonely. It can also make the emotional pain worse. And some people feel guilty or blame themselves when they can’t “stay positive,” which only adds to their emotional burden.

King's College got caught with their pants down.

 

[Valentijn]

I did answer the survey - because they are going to get responses from their own non-ME "fatigue" patients, who they encourage to see their problems as being emotional and stress-related. So it's nice to make it a little harder for them to equate the responses of their cherry-picked fatigue patients with those from real ME patients.

I didn't try to make myself "feel" anything in response to the words. If I had, it would have been what I thought I would be expected to feel. But in reality, I didn't feel any emotional response to any those terms in the context of ME. Why should I? They're just symptoms.

If looking for an emotional reaction, maybe they should have tried "sectioning", "psychobabble", "secondary illness gains", "irrational psychosomatic theories", and "Sir Wessely"

The disease doesn't upset me. The idiotic politics around it do.

 

[alex3619]

So far most of the old stress/disease or positive-psych/disease research has been debunked. Its still possible, because we know that stress hormones can damage the body, but the sweeping hyperbolic claims made by some are looking very unlikely. There is also empirical evidence that stress is often not good. However stress can have positive effects too - its more about complicated biology that is not my area of expertise, than it is about psychology.

 

[chipmunk1]

i am not sure if not doing the survey would help. Possibly we would soon see the next headline: Sufferer's lack of interest in ME research shows secondary illness gain greater than expected..

 

[A.B.]

King's College got caught with their pants down.

The way they present this information is called "weasel words".

Wikipedia explains this better than I can:

A weasel word (also, anonymous authority) is an informal term[1] for words and phrases aimed at creating an impression that a specific and/or meaningful statement has been made, when in fact only a vague or ambiguous claim has been communicated, enabling the specific meaning to be denied if the statement is challenged. A more formal term is equivocation.

 

[alex3619]

If looking for an emotional reaction, maybe they should have tried "sectioning", "psychobabble", "secondary illness gains", "irrational psychosomatic theories", and [name deleted as its distressing]

The disease doesn't upset me. The idiotic politics around it do.

 

[alex3619]

The way they present this information is called "weasel words".

Wikipedia explains this better than I can:

Funny, I find this all over the psychobabble literature.

 

[alex3619]

I suspect it doesn't matter how this is surveyed, or the outcome, I suspect they might either drop it or spin it. If you answer truthfully, and we all do the survey, they could say "subgroups". If we refuse to respond, then @A.B. is right, they will say we have no interest, or are afraid of psych. If anyone starts putting in stacked answers, like "not concerned" (which is usually the case for me for the sample questions on this thread, with very rare exceptions only on a really bad day), then they might use this as an excuse to delete answers from the sample. Its no-win. If they were really concerned they would organize a properly defined cohort, but if they did that they would have to admit they used Oxford criteria.

 

[chipmunk1]

Which of the following acronyms produce an emotional response in you:

BS
CBT
BPS
SW
GET
BSBSBS

 

[alex3619]

Which of the following acronyms produce an emotional response in you:

BS
CBT
BPS
SW
GET
BSBSBS

The first five? The last one I have to think about, and thinking switches off emotions. But it doesn't affect my energy. As far as emotions go its more about derision, scorn, contempt - generally the dark side of mirth.

But saying BS three times makes it true, doesn't it? I mean if you believe in magical babble, how the mind can perform miracles, why not Elves and the Law of Threes?

 

[Esther12]

This looks like the most hilarious BPS study yet. Desperate to see the final paper.

 

[jimells]

I'm constantly amazed at all the fraud, corruption, and outright lies that spew forth from scientific researchers today. Sure is getting hard to see the signal through the noise...

 

[shahida]

If patients can participate why not mess it up by saying 'neutral' to everything? Although as everyone's saying it probably wont matter much- they'd just go on to the next thing. And so the merry go round goes on.......

 

[Esther12]

@maxwhd linked to this:

http://www.kcl.ac.uk/iop/news/recor...ify-how-online-rumours-affect-our-health.aspx

It will classify online rumours into four categories: speculation, controversy, misinformation (something untrue spread unwittingly) and disinformation (something untrue spread with malicious intent). It will also automatically categorise rumours to assess their authority, such as news outlets, journalists, experts, eye witnesses, members of the public or automated ‘bots’. By looking at users’ history and background, it will help spot where Twitter accounts have been created purely to spread false information.

...

The project is a collaboration between the University of Sheffield, King’s College London, the Universities of Warwick, Saarland (Germany) and MODUL University Vienne (Austria), as well as four companies, ATOS (Spain), iHub (Kenya), Ontext and swissinfo.ch

I wonder how they'd class PACE's claims on recovery?

 

[Sean]

I smell an(other) arse-covering propaganda blitz coming on.

The 'dangers' of the internet to psychological health is one of Wessely's favourite hobby horses, despite his oft predicted great online psycho-pandemic having yet to arise. He thinks we should all just trust the doctors and not worry our pretty little heads.

Bollocks to that.

 

[chipmunk1]

I smell an(other) arse-covering propaganda blitz coming on.
The 'dangers' of the internet to psychological health is one of Wessely's favourite hobby horses, despite his oft predicted great online psycho-pandemic having yet to arise. He thinks we should all just trust the doctors and not worry our pretty little heads.

strange world they are living in. SW thinks the internet is dangerous but didn't he write that Chernobyl radiation wasn't so dangerous as most of the negative health effects were caused by negative thinking and that the aluminum poisoned water in Camelford had only negative effects if you believed it.

Therefore i conclude the Internet is only dangerous if you believe it. (and i don't)

His danger scale must be something like:

information > aluminum > radiation > infection

Also when it comes to misinformation then the KCL should start with their own website first before moving on to the entire internet. They still have that cancer personality nonsense on their website.

 

[Antares in NYC]

This "study" is pure garbage.

Sick and tired of papers endorsing the "Peter Pan principle" to this disease:
'If you only truly believe it, you will get cured on your own. Clap if you believe! Clap harder!'

Waste of time, effort, and money.

 

[cmt12]

I just want to say I do not believe negative thoughts or thoughts of any kind are the cause. I am not a follower of Freud or his theories. It is a continuous stress SIGNAL that I believe is at the root of the problem. Okay, I'll leave it alone now.

So, why do some people experience relief and even claim to be cured by CBT, or the Lightening Process, or Gupta? If you read what I wrote about repression, the repression point, and energy allocation then you will understand. If you are just across the repression point and barely symptomatic, these techniques will allow the symptoms to be shoved below by de-stressing. Stress requires energy so preventing stress frees up energy that can be used to repress symptoms. This is why so many people who experience relief using these techniques will almost always have their symptoms come back later. For those of us that are worse, our symptoms can not be repressed no matter how much de-stressing or positive thinking we do.

Now, I'm curious how any other theory can explain how people can get substantial symptom relief to the point where they feel cured using these techniques? Unless you rationalize it by saying they never had CFS/ME to begin with.