Pippa Stacey, who is taking a BSc in Psychology in Education at the University of York, has asked us to publicise her survey on the use Cognitive Behaviour Therapy as a tool in the management of ME/CFS. If you would like to take part, please read her request below.
Pippa writes:
I am looking for participants with ME/CFS to take part in a research questionnaire for my university dissertation. The questionnaire can be accessed on both computer and mobile devices, and should take no longer than 25 minutes to complete. You can also save your responses partway through to return to later, should you need to take a break. The results from this study may be used in future research but your responses will be kept anonymous throughout the study, so that you cannot be identified from your individual answers.
The purpose of the study is to examine the use of Cognitive Behavioural Therapy (CBT) in the management of ME/CFS. The questionnaire aims to investigate the opinions of patients towards CBT, and also how these opinions differ according to factors such as age, location, occupational status and more. If you have had CBT in the past, you will also be invited to share your experiences.
Though this research is for a psychology dissertation and focuses on a psychological management approach, the research will in no way imply that ME/CFS is a psychological condition. As an ME/CFS sufferer myself, I aim to critically evaluate the use of CBT and question the way it is delivered in this debilitating physical condition.
If you have any concerns or questions about this research prior to completing the questionnaire, please feel free to contact me at PLS504@york.ac.uk.
Click on this link to find the survey: https://york.qualtrics.com/SE/?SID=SV_b1QJJj33F2QXz81
Why?
The discredited PACE trials attempted this. Why persist in looking at CBT?
Why not?
The point of this survey is to help someone continue their education and if along the way people can share experiences of CBT, thus shedding more light on a weakening therapy method wouldn’t it be even more beneficial?
Completed in less than 20 mins. Could be completed quicker but I took the time to fill in free-form responses. I see no harm completing this survey.
Don’t waste your time with a dissertation that has no place in ME. We need Neurologists and students who will study ME for the serious neurological disease that it is please.
I’m sorry, this kind of response gives us a bad name. Refusing to answer this survey won’t turn the student in question into a neurologist, will it? Did you actually read what was written. This student is already sympathetic. She is doing a study of our views of CBT. I used it as a way of making my own opinion more widely known. If the survey had been biased, I would have abandoned it. How can you live up to your user name if you say no to everything. No one will study ME if the people with ME always insist that the answers are already known.
Oh, dear; what next? A survey on experiences of turning lead into gold?
PS. Why is the illustration of the survey only showing the top 2 results and the ‘VERY SATISFIED’ with a tick in the box in RED? Seems like coercion or at best manipulation to me!
Just want people to recognise how the brain can be tricked into putting what others would like rather than what you really think. After all it is about behaviour and the brain!
I filled it in I see no harm in education of someone who has probably been mislead by her tutors.
Very easy to complete, and it purely asking for our opinions on CBT.
This study is not in the slightest bit anti-ME, it is a very positive thing for us.
Thank-you, Pippa, for asking what we actually think about CBT.
Good luck with it!
Hi Pippa. I have a suggestion. Edit your post so that the photo has ‘very unsatisfied’ or nothing clicked. While I understand that you are an ME patient and this is not a pro-CBT survey, the photo can easily mislead people.
My mistake. I’ll see if I can edit that photo now to remove the big red tick – or supply a different one, if I can’t.
I also think it would be a good idea to put the definition of what you mean by CBT here and at the beginning of the survey. There is the definition of CBT that the world uses, which is to solve problems and change unhelpful thinking and behavior. In contrast the UK PACE trial and its proponents define ME/CFS as false illness belief, curable by CBT. “CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue. The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant’s symptoms and disability. Therapeutic strategies guided participants to address unhelpful cognitions, including fears about symptoms or activity by testing them in behavioural experiments. These experiments consisted of establishing a baseline of activity and rest and a regular sleep pattern, and then making collaboratively planned gradual increases in both physical and mental activity. Furthermore, participants were helped to address social and emotional obstacles to improvement through problem-solving.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065633/
After seeing the main story about the PACE Trial. Do you still agree that CBT surveys are really necessary?
If we all had the support of the general public, family, friends and most of all Doctors like those, we would be far less likely to need CBT!
I don’t disagree with CBT in its rightful place, but wouldn’t a genuine acceptance of ME as a neurological disease be far better? Think of all the extra funding which could be raised if everyone knew our struggle and the terrible suffering that people are undergoing without any help at all – even CBT.
Then we would be able to really step up the research and find a cure.
PS Thank you Tony for removing the big red tick. It hasn’t gone unnoticed the change in outcomes, but I’ll overlook that one!
I don’t believe in tick box health assessments either. How do you assess peoples health in a box that has no way of explaining the different symptoms, hours, days and our individuality as human beings?
Bring back the system of face to face appointments lasting longer than 10 minutes please.
I think the TGI Friday news says it all. CBT didn’t do much for many at all. Sorry but we need real help.
I must say that the general attitude of posters has rather upset me. Has the red mist descended on so many people when they read the letters CBT that they have lost all or most of their ability to reason?
The original purpose of this article seems to be to help someone attempting to continue their education, which isn’t the most easy of things to do in the current climate of study fees increasing and tutors leaving for other opportunities. Never mind how difficulties increase tenfold when suffering with M.E. and even writing becomes difficult for the reasons of fatigue, aches, pains and concentration impairment to name a few.
Just ask yourselves how you would feel if the information collected in this survey went on to point out how it would be better to find different types of therapy for different situations instead of relying so heavily on one type for all?
Jbob. My comments are to help people suffering from ME to understand how easily it is to be pressured into thinking the wrong thing. If you are told ME or CFS is a psychological/psychiatric illness and don’t know any different, Then it places a label, a false label on a person.
You can easily, as many have said in the past think you are going mad when Doctors and health professionals say that.
I just want to get priorities right for sufferers. CBT may have a place, but it is not a priority and when embarking on a course of CBT, then people should do it for the right reasons.
We need diagnosis as a priority and it must be classed as a neurological disease first so everyone knows that. Then CBT can help sufferers to cope through that process. Sadly the clinics and psychiatrists do not help by including a false illness belief or putting seriously ill patients through exercise that causes damage.
Information is crucial, as knowledge of the illness is so important.
I do hope that having ME herself that this student tackles the questionnaire appropriately and can help us all.