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

[Firestormm]

Taken from a post yesterday on mecfsforums:

EDIT: Apparently I can't repost the content of this post. I have been informed it was made by a member of said forum in the 'member's only area'. Anyway, you can read it in full on the link above. So I have removed it. Hope what remains is alright Patricia.

If anyone would be willing to complete the survey it can be found here: https://www.survey.bris.ac.uk/kcl/me-cfs

I did the survey to see what it was all about - words don't tend to evoke any feelings in me whatsoever so my answers were reflective of this.

The contact us revealed:

For questions relating to this survey or the use of BOS at King's College London, please contact:

Alicia Hughes

Alicia.hughes@kcl.ac.uk

I guess the 'research' is happening whether we like it or not, so perhaps it isn't such a bad idea to complete this survey and help ensure a more reflective contribution.

 

[Cheshire]

attention and concentration difficulties???

Here's the first page of her "research" which turns to be not that much about cognitive disfunction....

 

[Firestormm]

attention and concentration difficulties???

Here's the first page of her "research" which turns to be not that much about cognitive disfunction....
View attachment 7788

Part of her research. I am not in any way defending it. But it is 'out there' and unless we contribute then the results will perhaps reveal things that are unreflective. Or don't complete it. I don't personally care very much.

 

[Cheshire]

unless we contribute then the results will perhaps reveal things that are unreflective.

I'm afraid with such questions (the whole questionnaire is of that kind) any things revealed will be unreflective...
This whole thing is probably of no importance, but once again, they are treating us like dumbs, talking of "understanding attention difficulties", when thay yet "know" the answer: our undriven emotions and maladaptive thougts are leading us to develop CFS.

Another example:

 

[Little Bluestem]

What is the difference between 'Not at all distressing' and 'Neutral'?

 

[Firestormm]

What is the difference between 'Not at all distressing' and 'Neutral'?

All my answers were neutral if it helps. I don't feel emotional/have feelings about words and their use particularly one way or another. I guess 'not distressing' would mean you definitely don't find the word emotional.

To be honest I glossed over much of it - my brain refused to try and interpret the meaning...

 

[Marco]

I am asking people with CFS/ME to complete a short survey (5-10 mins) rating a list of words in terms of how emotive and relevant to your experience of CFS they are.

And this helps in "understanding more about the attention and concentration difficulties that many people report" in what way?

Rhetoric question. Maybe I should ask Alicia directly?

ETA - Rhetoric(al) question - now that pisses me off!

 

[Firestormm]

And this helps in "understanding more about the attention and concentration difficulties that many people report" in what way?

Rhetoric question. Maybe I should ask Alicia directly?

Well we have only what she said above to go on. I presume she wants to identify words - one way or another - before she embarks on the main project... or something. Yeah contact her. Might be useful Might not.

How many people here react when 'fatigue' gets plastered all over the press? Gods know what she'll do with the results Marco: and they ain't spillin' no beans.

 

[A.B.]

Garbage in, garbage out. The idea that negative thoughts cause CFS is garbage, therefore the "study" will be garbage. They are not trying to understand anything, they're trying to collect data to support their pseudoscience and continue their charlatan careers.

No patient should work with these people.

 

[chipmunk1]

they want to find out if the word "infection" triggers a cortisol release in you so that they can blame your health problems on cortisol overproduction caused by your anxious thoughts... beware..

i don't think this has anything to do with attention difficulties rather than how you react emotionally to certain words which is the cornerstorne of CBT: Challenges in life are not the problem, how your mind reacts to them is and how your mind reacts to them is influenced by your cognition and your atttude.

They believe because you cannot cope or you overreact you make yourself ill by producing too much cortisol which then causes attention problems and cognitive impairment.

http://www.kcl.ac.uk/innovation/groups/projects/cfs/patients/causes.aspx

The pressures of life
Both from research and anecdotal evidence, it is now clear that anyone under stress is more likely to become fatigued and/or ill. Some of the reasons for this are only just becoming clear and are the subject of a new field of medicine -psychoneuroimmunology. As the name suggests, this studies the links between life events, the way we perceive and cope with those events, the functioning of our brain and nervous system and the functioning of our immune system.

Personality Factors: It is now clear that a tendency towards hostility and aggression is positively correlated with a tendency towards heart disease. Recent evidence has shown that a tendency to suppress strong emotion and to avoid conflict is positively correlated with the development of certain types of cancer. Is there any type of personality that is more likely to develop Fatigue?

What can keep fatigue going?
How we cope makes a difference
Take the example of heart disease. Rehabilitation from a heart problem can take a variety of courses. In one scenario the individual becomes fearful of any exertion, believing that this increases the likelihood of another heart problem. They feel helpless and under threat of death. If they are a smoker or drinker or over-eater it is possible that they resort to more of these behaviours because of the stress. They become anxious and demoralized.

The combination of inactivity, fear, helplessness and use of food and drugs does indeed make them more likely to another cardiac incident.
In an alternative scenario, the same individual adopts an approach of gradual re-introduction of exercise, reduction of stress and stressors and develops a feeling of being in control of their recovery. Prognosis thus improves.

More subtly, in recovery from cancer, the individual's beliefs about outcome have been shown to be important. On receiving diagnoses, individuals who adopt either the fighting it attitude, or who go into denial, have a better chance of survival than those who feel hopeless and helpless. Prognosis in recovery can be improved by helping people change the way they manage their illness

http://www.kcl.ac.uk/innovation/groups/projects/cfs/patients/physiology.aspx#cortisol

Mental functioning: Anxiety may affect mental functioning in a number of ways and contribute to the following: Mood disturbance; e.g. irritability, being easily upset, Inability to concentrate, forgetfulness, indecisiveness, restlessness; e.g. fidgety, can't sit still, tendency to go over things again and again.

Conclusions
As we said there is good evidence to show that all of the above effects are reversible by a programme of gradual physical rehabilitation. Learning to spot and deal with sources of stress is also important. Lastly, not worrying too much about symptoms is probably crucial The more one worries about a symptom, the more one focuses on it, and the more stress this generates, which in turn worsens the symptoms.[/QUOTE]

I am a researcher in CFS/ME, my sister suffers from this condition and has done for many years- hence my interest in research in this area.

[satire]Why is she still ill? With connections to the best CBT therapists and the King's college should be well in no time.

Or maybe the availability of cognitive and behavioural therapies is actually correlated with worsening of symptoms? Just ask Karina Hansen.
[satire]

 

[Marco]

Well we have only what she said above to go on. I presume she wants to identify words - one way or another - before she embarks on the main project... or something.

Could be although if it was a simple matter of identifying key words relating to attention and concentration difficulties then why not frame the questions in terms of how they affect daily functioning rather than how 'emotive' or 'relevant'?

I suspect there may not be any more to it than what's collected from this questionnaire.

 

[Valentijn]

I feel sorry for her sister. Assuming the sister with ME/CFS actually exists.

 

[A.B.]

I feel sorry for her sister. Assuming the sister with ME/CFS actually exists.

I have wondered how many of these stories are made up by the psychoquacks just to come across as trustworthy. There is a paternalistic attitude in psychology and psychiatry where it is considered perfectly acceptable, even good, to manipulate patients with lies just to get them to do treatment because the treatment is seen as perfect, and patients are seen as little children that are unable to make good decisions by themselves.

 

[chipmunk1]

What is the difference between 'Not at all distressing' and 'Neutral'?

One of the two makes you less guilty than the other.

 

[biophile]

KCL make a lot of claims without so much as a single reference to back them up.

Most of the CFS stuff is more unproven assumption/ideology/speculation than researched fact.

Here is at least one reference for them to examine for all their positive psychology in cancer care:

"Positive psychology in cancer care: bad science, exaggerated claims, and unproven medicine."

http://www.ncbi.nlm.nih.gov/pmc/articles/pmid/20146038/

 

[chipmunk1]

KCL make a lot of claims without so much as a single reference to back them up.

Most of the CFS stuff is more unproven assumption/ideology/speculation than researched fact.

Here is at least one reference for them to examine for all their positive psychology in cancer care:

"Positive psychology in cancer care: bad science, exaggerated claims, and unproven medicine."

http://www.ncbi.nlm.nih.gov/pmc/articles/pmid/20146038/

Peterson [1] concluded that “positive psychology will rise or fall on the science on which it is based (p. xxiii).” Using this standard, positive psychology has fallen in its treatment of these four important areas of inquiry that are highly relevant to Annals readers. We call on positive psychology’s leadership, which to this point has fostered a destructive exuberance in the four areas we have reviewed, to challenge positive psychologists to rededicate themselves to a positive psychology based on scientific evidence rather than wishful thinking.

Conclusion
We urge positive psychologists to rededicate themselves to a positive psychology based on scientific evidence rather than wishful thinking.

 

[Firestormm]

So then. I take you lot wont be completing the survey?

 

[lansbergen]

So then. I take you lot wont be completing the survey?

No way. Anything patients say will be misused.

 

[A.B.]

So then. I take you lot wont be completing the survey?

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.

 

[chipmunk1]

No way. Anything patients say will be misused.

The way the survey is structured hints that they already know what they are looking for and are fishing for correlations.

pile of shit that is the BPS model

A pile of Freud? The BPS was created by someone who was trained in psychoanalysis.