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Online study: comments
Wednesday 19 November 2008
We’ve had a few members participate in the University of New England’s online ME/CFS study (see Saturday’s news item) – and they’re not entirely happy about some of the questions (latest comments first):
GH said on Friday 21 November:
“I have participated in the on-line questionnaire and I have the following comments (and note the comments of the other people on your site):
1. Ethical Issues - there are a number of issues here that need to be addressed:
(a) Physical Symptoms - One of the comments states that it exhausted them. There is an allowance in the study for addressing the stress or distress caused by the questionnaire. There is NO allowance for any exacerbation of physical symptoms of the condition. I personally believe this warrants a complaint to their ethics department. I believe that the University is responsible for any person that is made physically ill by the questionnaire, because they attempted it.
(b) Loaded Questions - There are numerous "loaded" questions in the questionnaire. Without putting too fine a point on it, the research is driven by the psychological/psychiatric school of thinking and this comes through in terms of the researcher's framing of questions. There is no allowance for the option that the question is not applicable ... My suggestion is to use one of the boxes in which "Other" appears in another question. Make reference to the question that is in dispute by number and state you disapproval ... Once again, I think that this should be taken up with the UNE ethics committee because it pre-supposes that there is a fear of exercise - it provides not option to describe where the apprehension comes from, or if indeed there is a fear. Personally I have no fear of exercise. I just know it will cause pain and fatigue and I pay the price accordingly. I am sure that many are familiar with the boom/bust cycle.
(c) Fatigue Assumption - There is a definite focus on fatigue here. That is fine. However, I take exception to way in which ME, CFS, FM and ME are portrayed in contrast to MS. In the latter case, it refers to MS related fatigue. MS is of course identifiable with a definite test and has endured that which ME, FM and CFS are currently enduring in terms of validity. In my view, the fact that the questionnaire fails acknowledge CFS related fatigue, ME related fatigue or FM related fatigue. This perpetuates the belief that there is little more than fatigue going on within these conditions when clearly this is not the case.
(d) ME/CFS - There is a reference to ME/CFS within the questionnaire, which leads me to conclude that there is a distinct misunderstanding in the research as to what is what when it comes to the definitions being utilised by the researcher.
One could assume that it is Fukuda et al (1994) definition of CFS that is being used here. However, the reference to ME/CFS is more reflective of the Canadian Guidelines or Carruthers et al (2003).
Nothing is clear here.
Those with CFS and those with ME/CFS are distinctly different due to the criteria under which they were diagnosed.
These are distinct groups of participants are they not? How can they suddenly jump from CFS and ME as distinct entities, then use ME/CFS? They don't ask any questions about ME/CFS.
The Australian Guidelines of Loblay et al (2002) place ME into the CFS definition, then use the Fukuda definition of CFS to identify patients (noting it allows for clinical judgement). In December 2007 the CDC made it very clear that ME is not CFS. If ME is not CFS, then ME is a distinct entity that has been identified and explains the symptoms, therefore disqualifies the participant with ME from CFS.
Ethically speaking there is no distinction as to what is being researched here. An ethics application requires that there be an identifiable cohort.
2. Grouping of Results - What is not clear from the questionnaire is how the researcher intends to use the results. Is the researcher going to group ME, CFS and Idiopathic CFS together into one heading of CFS???? If not, the data collected would be reported in accordance with their groups and reported distinctly. If the data is grouped as CFS, the data is false because they are not the same entity.
3. Focus on CBT and GET - Well this wasn't a surprise when you consider the psychological/psychiatric emphasis and the way in which the Australian Guidelines are directed towards fatigue. I also noted an emphasis upon medications that treat psychiatric conditions and other mental health problems. I take Lyrica ... but that wasn't on there. It demonstrates a lack of literature research when one does not offer other alternatives on the spectrum of treatments.
4. Nomenclature - The research quite clearly does NOT look at ME/CFS, ME or FM ... so one can only conclude that these three have been grouped into the banner of CFS. I do not and cannot see how that can be valid research when the population being examined is not the same and is being misrepresented as CFS. This is an issue that has to be brought before the UNE Ethics department. It is flawed research in my view.
Personally, if you are going to undertake this questionnaire - (and keep in mind it is by influencing such research with the reality of our situation that we can effect change) - use the boxes in which you can comment to comment on questions that do not allow you to be specific in your answer. Make it blatantly clear when you do NOT agree with the question, and state why not. If it said are you afraid ... then say no ... but clarify it.
There were numerous other issues, but quite frankly it is too much to go through in one single comment. Personally I believe that our peak body (or even our state bodies), should register a complaint to the UNE Ethics committee and point out how offensive the tone of this research is, how restrictive it is in its questions (almost biased in its approach towards a certain outcome ... "afraid" being an inference that people irrationally fear exercise when there is no attempt to gauge the apprehension or the reasons behind it).
JG said on Thursday 20 November:
“They are coming from the psychological viewpoint but I wonder if enough of our members and other people accessing our websites answer it they will change their minds.
I've completed the survey to see what it was like and to me some of the questions are loaded e.g. 'I am afraid that I will make my symptoms worse if I exercise'; my response was I'm not afraid - I know what will happen if I tried to exercise. I'm still back at the 'Can I walk to the letter box today?' stage.
Unfortunately, it is an online survey so you can't scribble notes like that - very frustrating. I hope to have the energy at some stage to write to them as an individual.”
AK said on Wednesday 19 November:
I have just attempted to do the survey. Most of the questions were multiple choice and, often, none of the options given described my situation at all. After about 45 minutes I dropped out of the study because I had become mentally exhausted. I wish I had not wasted my time and/or energy attempting the survey. I would not recommend this survey to ME/CFS sufferers.
MC said on Sunday 16 November:
“We would like to draw your attention to the latest research. For example the statement 'unhealthy behaviours (e.g. lack of exercise)' perspective regarding Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) does not appear take into account the key symptom of ME/CFS of post-exertional malaise. Post-exertional malaise includes a disproportionate loss of mental and physical stamina, rapid muscle and cognitive fatiguing and/or pain and a worsening of other symptoms following physical or mental activity. It can be delayed 24 hours or more and recuperation is prolonged, generally taking at least a day and sometimes weeks or months. The level of activity that worsens symptoms varies from person to person, hour to hour and day to day and can be minimal.
Clearly a study of ME/CFS needs to take into account the potential negative consequences of physical activity for people with ME/CFS.”
JH said on Sunday 16 November:
“I found it a little disconcerting on a few levels (scientifically and otherwise). I'd like to see their hypothesis. I hope I'm being naive in worrying that it might be designed to link fatigue in general to mental illness.
I found some of the questions to be narrow and there were some logical errors in my opinion. There is often room for concern with psychological research of this nature, especially when there is so much room of interpretation in the questions - which then might lead to more interpretation in the analysis (pre-statistical and statistical).”
We’ll post comments as they arise to keep you informed of the overall view of the study.
In the meantime, you can participate in the study here: