Pilot survey for attention and concentration study

[ME/CFS Researcher]

I am doing some research with King's College London into the attention and concentration difficulties that many people with CFS/ME experience. This research aims to understand these issues further by developing neurological tasks which assess attention and concentration.

The research is at it's very early stages and before we can start developing neurological tasks, we need to first understand people's experiences of CFS/ME. In order to gain a better understanding of the issues people with CFS/ME face, we have conducted in-depth interviews with people with CFS/ME.

We are now circulating a survey in order to gather quantitative data to reflect the wide range of issues people experience and the differing degrees to which people find these issues distressing.

The survey is not part of the main study but rather is intended to inform the direction of the research and the development of the neurological tasks.

If you would be happy to take part the survey should take 5-10 minutes and you can save your responses and come back to it if you need a break.

Here's the link to the survey: https://www.survey.bris.ac.uk/kcl/cfs_me

Your participation would be greatly appreciated!

 

[Sasha]

I am doing some research with King's College London into the attention and concentration difficulties that many people with CFS/ME experience.

Hi - just wondering who is on the research team - including the principal investigator and anyone else whose name would be on the research when it's published.

 

[A.B.]

You will be asked to rate a list of words in terms of how personally emotive or distressing you feel they are. I.e. the degree to which the word brings to mind an unpleasant or distressing emotion related to your CFS.

So you're fishing for data to support your hypothesis that ME/CFS is caused by negative thoughts and beliefs. And you call it a study about "attention and concentration". As if you had any interest in reality. No, this is just about promoting the pile of shit that is the BPS model which is used against patients, denying them proper medical care, biomedical research, and disability pensions.

 

[Wildcat]

.
Who is funding the study, what is the amount of funding for this study, and who are the researchers?
.

 

[Helen]

I don´t find the survey scientific , nor the way it is presented. I think it is an insult to ask us to participate on these conditions.

 

[chipmunk1]

To be honest i am not seeing how the questions are related to attention. They seem to asses how one reacts emotionally to certain words. Isn't that related more to cognition and how you process things emotionally?

I can't see how this benefits patients. It is already known what symptoms we have.

Could you describe in more detail what exactly you are researching, the description is very vague an not consistent with the survey.

If it is related to BPS psychrrhea i won't participate. The most distressing word i know is "Biopsychosocial"

 

[Cheshire]

With all due respect, the scientific basis of your survey seems very thin...


How do you verify people answering this online questionnaire are people suffering from ME/CFS and not wrongly self-diagnosed /misdiagnosed people or people who have nothing to do with the disease?



Is there a control group (healthy people, people suffering from comparable conditions…)? If not how do you expect to use these data not knowing in what they differ from other groups?



Your survey is all about emotions related to health matters, in which way do you think understanding those interactions in people with ME is important for a study about attention and concentration?


I'm also very surprised that a direction of the research held in King's College needs some basic info about ME/CFS patient before starting a research.

 

[A.B.]

Cheshire, these are good questions, but they probably know exactly what they're doing. Do you really think that a researcher needs to be educated about study design? I don't exclude that standards at King's College have dropped so low, but I think it's more likely that they know exactly what they're doing.

 

[Cheshire]

Do not worry for me, I am pretty aware they know what they are doing.
But all those basic and somehow naive questions need to be answered.

 

[chipmunk1]

[satire] maybe this survey will look less suspicious if they explain how they will use the data against patients.[satire]

 

[Roy S]

There is a previous thread started July 9 on this subject:

http://forums.phoenixrising.me/inde...culties-in-chronic-fatigue-syndrome-me.31314/
　
This reminds me of an old cartoon I saved. Two researchers are excitedly watching two dogs as they ring a bell. One dog says to the other "They want me to salivate but I'll be damned if I'll give them the satisfaction."
　
　

 

[Valentijn]

Hey, @ME/CFS Researcher - maybe you can explain how your research fits into ME/CFS as a neurological disease defined by the CCC or ICC. And exactly how do you believe that chronically low blood pressure, immune dysfunction, and our abnormal 2-day CPET results interact with our "emotional" reactions to certain terms?

Please do something relevant in the field for a change, or go get a real job. Either way, stop lying to and about ME/CFS patients - enough is enough.

 

[peggy-sue]

I did do the initial survey, I would like the researcher to know that the only word which upset me was "fatigue", becuase I do not have fatigue, I have ME.

"Fatigue" as a word upsets me because of the abuse perpetrated on sufferers via the use of this vile word.

If she wants to really do something about attention and concentration, she would be better off using the dual task paradigm whereby folk are required to do both a word recognition task and an artithmetical task at the same time, under time constraints.

This sorts out the difference between simple logo recognition and actual working memory.

It was used extensively by a Dr. Gerald Matthews in the field of personality research. It's a simple computer programme, should be easy enough to track down. I used it in my thesis.

 

[Sidereal]

I am doing some research with King's College London into the attention and concentration difficulties that many people with CFS/ME experience. This research aims to understand these issues further by developing neurological tasks which assess attention and concentration.

The research is at it's very early stages and before we can start developing neurological tasks, we need to first understand people's experiences of CFS/ME. In order to gain a better understanding of the issues people with CFS/ME face, we have conducted in-depth interviews with people with CFS/ME.

The word you are looking for is "neuropsychological" not "neurological". Such tests of attention have existed for nearly 100 years and are in daily use by clinical neuropsychologists all over the world.

 

[NK17]

ME/CFS Researcher is MIA (Missing In Action)?
I see I'm not the only one on this brand new PR's thread waiting for explanations and names, which professional scientists would have no problem to provide .
Let's be patient and courteous, let's wait and see.

 

[Bob]

I am doing some research with King's College London into the attention and concentration difficulties that many people with CFS/ME experience. This research aims to understand these issues further by developing neurological tasks which assess attention and concentration.

I think it would be polite and proper to identify yourself and the team you are working with.

 

[Wildcat]

.
I have had neuro-cognitive function testing. None of the tests included rating emotional distress (or non distress) responses to specific words. Can you explain why the whole of the questionaire is asking the person to rate their levels of emotional distress (or non-distress) to specific words? What does that have to do with the Neurological disease ME (WHO ICD 10 G 93.3)? What is the purpose of this research? Have similar studies been done on people with the WHO ICD G categorised disease MS (for example)?

Sorry, thats a lot of questions. There is no rush to answer, in your own time.
.

 

[TigerLilea]

>>>Recalling a time when you were experiencing your worst symptoms, please rate these words in the degree to which they bring to mind an unpleasant or distressing emotion related to CFS.<<<

@ME/CFS Researcher

Seriously???? This survey is a load of crap and a complete waste of my time. The only time I get distressing emotions related to CFS/ME is when I read of yet another British researcher or journalist who still hasn't gotten the message that CFS/ME is NOT a psychological illness. When are you going to start researching a biological cause for our illness? If someone could find an explanation for my unrelenting fatigue since going on antibiotics for two very badly infected teeth which resulted in me having a very bad cough and cold for six months, I wouldn't have attention and concentration difficulties. I do not have wrong thinking and I am not deconditioned. I have a physical illness that needs to be researched to find a cause and a cure.

"Only a fool does the same thing over and over again and expects to get different results."

 

[A.B.]

Recalling a time when you were experiencing your worst symptoms, please rate these words in the degree to which they bring to mind an unpleasant or distressing emotion related to CFS.

Shouldn't these questions be neutral? This one is almost begging the reader to make a connection between illness and emotions.

 

[Isabelle]

I suggest that a more useful survey would involve questions about why people with ME (PWME) distrust researchers from King’s College.

King’s College promotes a bastardised form of Cognitive Behavioural Therapy (CBT). It has little to do with CBT as discussed by Dr David Burns (Stanford University) in his book “Feeling Good.” CBT in its pure form is a useful energy conservation technique and valuable in the management of any chronic illness. I believe Dr Burns has now developed a new approach and moved beyond CBT, acronym TEAM. The E stands for empathy. It involves the patient evaluating the therapist’s performance and rating it. If the therapist can put aside their ego and respond to the criticism, without defensiveness, it deepens the therapeutic relationship and speeds the rate of recovery. Perhaps King’s College could invite Dr Burns to speak about this new approach, and especially about the concept of empathy. It would prevent you from posting surveys like this. You would realize that asking PWME to associate words with an emotional response was insulting and inappropriate. You would be able to empathise.

I would be willing to rate the performance of the researchers, and the standard of research on ME/CFS emanating from King’s College.