Copy of E-mail with response....
Student Researcher:
Laura Hamilton
Email:
L.Hamilton4@herts.ac.uk
Supervisor:
Dr David Wellsted
Email:
d.m.wellsted@herts.ac.uk
Hello. I just finished taking your fibromyalgia/cfs survey. There was something more I felt needed to be said. It seems that the premise behind your survey is to link lack of exercise, depression, negative feelings and isolation as the causes of fibromyalgia and CFS. Your survey has what I like to refer to as the "What came first the chicken or the egg problem". This is a common issue with psychological fibromyalgia and CFS surveys and studies. I will try to explain what I mean. Your study assumes that depression, negative outlook, and isolation led to fibromyalgia and CFS symptoms and that is the way it is geared. However, it is often the complete opposite. A person becomes ill with FMS or CFS, is then in pain and fatigued, and is UNABLE to have the same exercise regimen, family life, social life and work ethic they had before. Further, often when counseling fails to cure their illness, they loose the emotional support of any family and friends who believe FMS or CFS is purely a psychosomatic illness. The belief is that they are not trying hard enough or are mentally ill. The events I described then lead to the depression, isolation and negative feelings described in your survey. However, If a person were to answer your depression, negative feelings and isolation related questions on your survey with the selection often or some similar selection, your study is geared in such a way that you will assume depression, negative feelings, and isolation are the cause of their illness and not the result of the illness.
What I am trying to say is that your survey is not objective, it is subjective and therefore very biased. I suggest that you start over with another survey that is worded better. For example, you could have asked if the person was depressed or isolated or experienced negative feelings before they had FMS and/or CFS, but you did not.
Thank you for your time and consideration.
Sincerely,
Dear
Thank you for your considered responses to our survey. We always appreciate feedback from the people who take part in our studies.
We agree with you entirely, and we had tried in the opening pages of the survey to say that what we are interested in is how people respond to being ill. We do not take a particular view about what kind of illness people have. Most of the work of our group is with people who have illnesses such as Renal Failure or Rheumatoid Arthritis.
In particular we agree that the common finding that depression is associated with illnesses such as fibromyalgia or CFS is not informative.
What we want to know from this survey is how people respond to being ill. We understand your view that in many cases illnesses such as fibromyalgia and CFS may lead to a person being unable to engage in the activities that they had taken for granted up to that point in their lives. Indeed it is well understood that this change in life circumstances is very challenging, and can lead to all sorts of difficulties in a persons life such as not being able to continue working, depression, complications for families and friends and so on. In fact one particular point of view suggests that becoming depressed is a natural response to illness so that the body can recover (I am not sure whether this is correct, the evidence is difficult to obtain).
What we do know is this. People who have certain kinds of understanding about their illness (for our work in people with Rheumatoid Arthritis or Renal Failure) have more clinical problems over time; the consequences can sometimes be very severe. An example of this is where the person believes that their illness will be cured when clearly this is not possible (for example in Rheumatoid Arthritis), or the person believes that they have very little control over their illness or the symptoms they experience.
The first question we will try to address with this study is whether the kinds of views the person holds about their illness (eg how long lasting the person believes the illness might last, and whether the person believes they can do anything about the symptoms they experience) is related to how active the person is. Activity here might mean a lot of different things obviously not just visiting the gym. For our survey we believe that the kinds of responses that people give might be influenced by whether they are feeling down or depressed. By including these kinds of questions we can adjust for depression and anxiety in looking for the relationships we are interested in just looking to see whether people are depressed or not is not useful.
For this study we have used a number of questionnaires that are widely used, so we can be sure that the responses we are getting are reliable. The problem for us is that if we try to develop new questionnaires then we cannot be sure initially that the questions used are appropriate or the responses are reliable. This may cause us some problems as the tone of the questions might not be helpful for people with illnesses such as yours.
Your feedback is useful as we can start to think again about the opening pages of our survey, and perhaps whether we need to reconsider the questionnaires we use next time round we should probably be much more direct about our view of the nature of illnesses such as CFS or fibromyalgia. In the mean time if we can give you any more information, please let us know.
Regards
David and Laura
My response to them:
Well, this is the first time I have gotten a decent response from someone doing a psychological study on FMS and CFS. What a surprise. Usually when a person does this kind of survey on FMS and CFS, it is with the purpose of proving depression, trauma or some other type of psychosomatic illness is the cause of CFS or FMS. I apologize for making assumptions.