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Advice and comments requested on forthcoming online survey

Discussion in 'Latest ME/CFS Research' started by Dr Neil Coulson, Nov 10, 2013.

  1. Dr Neil Coulson

    Dr Neil Coulson

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    Dear all,

    I posted a message a while back with regards the forthcoming online survey about the role of peer online support communities. I wanted to start a new thread with this post so it has more prominence and that people have the chance to engage with it and make any comments they think relevant. I was worried my post was lost at the end of the other forum thread so here it is below. Many thanks, Neil.




    Hello everyone,

    I wanted to provide an update on progress and to seek your input into the study development.

    By way of an update

    Since I last posted I have been working on the development of the online survey that will form one part of the two part project (outlined in earlier posts). I am at the point where I am deciding what measures to include in the online survey and for this I thought it would be helpful and transparent to seek your input. The survey thus far includes:

    - background details about respondents
    - use of the PR forum (e.g. joining, no. of messages)
    - motivations for using the PR forum
    - open ended questions about online experiences of the PR forum

    THEN

    I intend to use a series of validated measures to tap into various cognitive factors and relate these to some of the variables included above. From chatting to Mark I understand that there is a range of experience and familiarity with some of these measures and I thought it would be helpful to list those that I am proposing to include (in addition to those above) but to seek suggestions from the membership of any other measures that people might feel useful. At the end of the day I would like to examine whether participation in the PR forum is related to any measures of well-being (broadly defined) and this has informed my choice of measures so far.

    Measures to be included

    CFS Illness Perception Questionnaire
    HADS - a measure of anxiety and depression
    Life Orientation Test - a measure of optimism
    Brief Cope - a measure of coping

    AND SUGGESTIONS FOR ANY OTHER IMPORTANT MEASURES??????

    At this point I wondered if any members with views on any other measures that might be relevant could suggest them to me? I have ideas but I would really like to engage with you and find out from your own past experiences any measures that you have worked with, read about or you are aware of that would be useful. I am also conscious of survey length so will have to make a judgment call if several are suggested but it is important to me to include measures that are validated, are understandable to members and the wider academic community and which tap into salient aspects of the CFS/ME experience (and which may be related to participation in the PR forum). I'd welcome your thoughts - either on this forum or directly via email if that is easier (neil.coulson@nottingham.ac.uk).

    Once confirmed - I then apply for ethics approval from my Institution and then when granted we can go live with the survey.

    I look forward to hearing from you and many thanks in advance - I truly appreciate your time.

    Best wishes to all,

    Neil
    Esther12 likes this.
  2. Dr Neil Coulson

    Dr Neil Coulson

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    I should add. My suggestions above are not fixed in stone - i will be reviewing the feedback and making decisions accordingly. Please feel free to suggest any scales that members would widely endorse. I appreciate there are many complex issues and so your thoughts and valuable experiences are especially helpful. Neil
    Esther12 likes this.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    What background details will you be requiring, and what will you do with them?

    Are you going to be including practical benefits from using Phoenix Rising, as discussed on the previous thread, and not just perception/well-being-type benefits? Many of us are here to learn more about the condition and what we can do to improve our health, and others are desperate for practical help such as personal and home care, mobility aids and benefits.
    SOC, rosie26, WillowJ and 2 others like this.
  4. Bob

    Bob

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    In my opinion, the HADS questionnaire is completely inappropriate for ME/CFS patients, for the same reasons discussed elsewhere on the forum.

    Furthermore, investigating comorbid psychological symptoms of ME/CFS patients is a controversial and complex area of research.
    That's not to say it shouldn't be done under certain circumstances, but I wonder if it is worth including a depression/anxiety questionnaire in this study at all, seeing as the main basis of the study is not a psychological investigation of ME/CFS patients?
    A full psychological evaluation of patients will not be made for this study, and any questionnaire results may throw up some controversial results, because of the difficulties & complexities involved in diagnosing ME/CFS.
    As the full context of any apparent psychological symptoms will not be investigated in this study, I question the usefulness and appropriateness of including any depression/anxiety questionnaire.

    It's a sensitive issue for ME patients, because of the way comorbid psychological symptoms have been misrepresented by some in the research community to attempt to define ME/CFS as a cognitive-behavioural illness.
    If the levels of depression/anxiety for patients using this forum is published, using an inappropriate questionnaire (or if unexpected results are published using any questionnaire), then I can almost guarantee that it will cause some disquiet on the forum. (It would be a shame for the study to get a negative reception on the forum simply because of the inclusion of an inappropriate depression/anxiety questionnaire.)

    I'm familiar with the HADS questionnaire, but not the other questionnaires.
    Would it be possible for you to provide links to information about the other questionnaires, so we could assess them please?
    Last edited: Nov 10, 2013
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  5. Esther12

    Esther12 Senior Member

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    Thanks a lot for asking about patient opinions on this.

    I'd agree with most of the comments already posted. I'd assume that Coulson would be aware/have thought about most of what I'm going to say, but not much harm can come from saying it anyway.

    A lot of the problems with these sorts of questionnaires stems from the fact that they're too often assumed to measure something other than individual's answers to the questions being asked. Also, as the experiences and social situations of those with CFS often come with peculiarities, it can be difficult to account for confounding factors, eg: research indicating more personality disorders amongst those with CFS compared to healthy controls. When comparisons are done with other groups with ill health, those differences disappear (imo because the questionnaires used wrongly class those in difficult social situations as having personality disorders, rather than because those with personality disorders are more likely to develop MS), but that hasn't stopped stigmatising and unwarranted claims being promoted by some researchers.

    Also, CFS is unusually quacky, and I'd have thought that this would affect a lot of patient attitudes. eg: the optimism test:

    1. In uncertain times, I usually expect the best.
    [2. It's easy for me to relax.]
    3. If something can go wrong for me, it will.
    4. I'm always optimistic about my future.
    [5. I enjoy my friends a lot.]
    [6. It's important for me to keep busy.]
    7. I hardly ever expect things to go my way.
    [8. I don't get upset too easily.]
    9. I rarely count on good things happening to me.
    10. Overall, I expect more good things to happen to me than bad.

    There is a danger that results from a test like this could be used to argue that disability in CFS is perpetuated by an abnormal lack of optimism, when the same results could also be used to argue that CFS patients have become jaded and cynical following misguided attempts to medicalise their cognitions and promote 'optimism' as a treatment, along with the regular disappointment that this leads to.

    For results from a test like that to be used as a measure of patient's cognitive/emotional tendencies rather than just the reality that they face, we would need some good evidence as to how reasonable it is for CFS patients to be optimistic about their future, compared to whichever groups their results are being measured up against. (I know this is not how things like this are normally done, but I really think that it is potentially dangerous to assess the cognitions of minority groups in terms other than those of 'rationality' and 'truth'. I would expect that gay people in Saudi Arabia would tend to be assessed as less optimistic than normal, and more likely to suffer from a 'personality disorder' - there is a danger that this is interpreted as a justification for those with power to assert authority over them, medicalising their own behaviour and preferences).

    I've only had a quick look at Brief Cope (here for others interested: http://www.psy.miami.edu/faculty/ccarver/sclBrCOPE.html ) but it looks like this could also be affected by the level of quackery and prejudice that surrounds CFS. CFS is unusual, in that it is so likely to lead to medical staff being actively unhelpful (imo - in their opinion I'm sure it's the patient's fault). I don't know if there are results for Brief Cope from groups facing similar problems, which could allow for meaningful comparisons.

    Also, to some extent, I think that you will need to make a judgement about the morality of the way CFS has been treated. Are my beliefs (that CFS is unusually quacky, that doctors are often actively unhelpful, and that a lot of researchers spin results in a way that harms patients) reasonable and fair - or a result of my own cognitive biases? Are the social problems reported by many CFS patients to be the result of the work of some of those psychiatrist who claim to be experts in this condition really just patients trying to deny their psychological problems, and run from the stigma of mental illness? Or is it that the poor quality of psychiatric research in this area has done real harm, and the researchers responsible for this deserve to be criticised?

    re: "- use of the PR forum (e.g. joining, no. of messages):"

    I'd have thought that this would allow a lot of members to be identified. I'm not sure if this matters.

    Another thing re optimism/pragmatism/rationality/etc: I would say that being on this forum has led to me feeling less optimistic, more angry, more worried, and more absorbed in intractable problems. That's largely because I was in a slightly naive bubble of faith, and did not think it was possible that in the 21st century a medical condition could be treated as badly as CFS has been. I've now read a lot of medical papers, checked a lot of references (often used misleadingly) and come to see how some truly repulsive quackery has been imposed upon me without consent, and led to doctors intentionally promoting a misguided optimism which served to distort my own actions and views. I would rather think honestly and clearly, and be informed about these problems, than be back in a bubble. I'm not sure that there are many questionnaires of assessing mental health that are intended to measure this sort of improvement though.

    Also, I'd like to suggest that you discuss your results here before writing your final paper, in order to allow patients to discuss/challenge/agree with your interpretation of results. (After this slightly rambling post, I can understand some hesitancy in agreeing to do this).
    Last edited: Nov 10, 2013
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  6. wdb

    wdb Admin

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    Would you be able to post some rough outline of the proposed methodology of the study. I'm particularly interested in how you would be able to attribute what you measure to the influence of actual forum usage rather that to other factors that may be common amongst the type of person that is attracted to online forums. Will there for example be inclusion criteria, control groups, will you measure people who don't use forums, have them use forums and measure them again...
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  7. barbc56

    barbc56 Senior Member

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    I think these are all very important points but I can't find the original thread which might answer some of my questions. Can someone post this? Thanks!
  8. Kina

    Kina Moderation Team Lead

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  9. WillowJ

    WillowJ Senior Member

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    In my opinion, it would be best to use something like the SF-36 (all the sections). I'm aware that this is a licensed test, however, and I don't recall what funding you have. There are some measures at WHO which appear to be free, but I haven't checked to see whether they are routinely used in research: http://www.who.int/classifications/icf/en/

    I think the HADS was modified for use in ill populations but it still could have some issues.

    If you must try to correlate it with health (rather than simply taking the narrative), I would look for measures including physical and general health being used in other diseases which are typically taken seriously.

    Generally speaking, most measures of psychological well-being are not designed for ill populations (download from Ellie Stein); they tend to sort our problems of illness (e.g. feeling we will be perceived differently because of illness, not being as capable as our peers because of our illness, needing to stick to particular diets or routines because of our illness, feeling stigmatized or at odds with our doctors or society because of a badly misunderstood illness, expecting negative things to happen because we have complications from our illness, having symptoms because of our illness [and the case definitions don't always cover all the symptoms and not all doctors are smart enough to know what illness is what]) into problems of psyche, rather than a rational interpretation of the world as it is for us because of our illness.

    This can be partially got around by using other similarly ill groups as controls, but most people will still interpret this as: "Illness causes neuroticism and other disturbances of psyche", not, "The questionnaire is nonspecific", which would be more correct.

    One must be particularly careful in a disease which is not well described physiologically, because any allegation of psychiatric disturbance will be taken as indication that psychotic behaviours are causal or are implicitly associated with that particular disease, and will increase the stigma of it and contribute to the difficulty getting medical care and social support (for this disease and any comorbid conditions, or for a condition misdiagnosed as CFS or ME), even if the paper takes care to word the conclusions differently.

    I expect your hypothesis is that forum membership increases wellbeing, but there are a lot of other coping strategies as well. Forum membership works for us--we are still here; we are a self-selected group. Some people leave forums because they prefer to think about other things (or for other reasons), and they find other ways to cope. A study by Jason shows that long-term patients increase coping. I think there are probably a multiplicity of ways to do this and a forum is just one of them.

    I strongly recommend that you not try to tie coping to forum membership, as it will probably turn out that there is no association, so it could backfire for us (i.e. we tend to get blamed for our choices of association and education, and if you can't prove this is superior, your paper will be added to the psychobabble sticks used to beat us with).

    Any type of support group or contact with the broader patient community could possibly be a better bet (e.g. many patients are connected through Twitter or other means, and not necessarily through a more defined setting like a local or national support group or a forum like this one).
    Last edited: Nov 11, 2013
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  10. Dr Neil Coulson

    Dr Neil Coulson

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    Yes - the idea is to offer a means through which the range of benefits derived from engagement with PR can be identified, described and disseminated. I have noted from the previous forum thread about practical benefits and will be looking at ways to ask about them. There will most definately be open-ended questions so there is always a space where something that hasn't come up elsewhere in the survey has a space.
  11. Dr Neil Coulson

    Dr Neil Coulson

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    Yes - the idea is to offer a means through which the range of benefits derived from engagement with PR can be identified, described and disseminated. I have noted from the previous forum thread about practical benefits and will be looking at ways to ask about them. There will most definately be open-ended questions so there is always a space where something that hasn't come up elsewhere in the survey has a space.

    Thanks for all these helpful comments. One thing to re-emphasise is that the purpose of the research is to explore how participation in the PR forum may help members. The challenge is to identify appropriate scales and methods through which everyone feels they can communicate these benefits. In the open-ended questions this is easy - and allows opportunity to discuss any issue of relevance and importance to a member. In terms of using standardised validated scales - it is important to use accepted scales that can be used in the scientific report writing and eventual publication. For example, if participation reduces perceived loneliness than a standard measure of loneliness would be needed. The challenge is there is so many to choose from, a lot of differing opinions etc. Not going to be an easy task so thank you for all your comments
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  12. Dr Neil Coulson

    Dr Neil Coulson

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    The study will involve members of the forum voluntarily completing an online survey (hosted by Bristol Online Surveys) that will ask about background demographic factors, use of PR (e.g. no. of messages, date of joining and a few other measures of engagement) together with a range of psychosocial measures validated in the literature. Naturally, in such a cross-sectional 'snap shot' type study conclusions and interpretations concerning causaility are difficult hence we are going to invite people to complete a few (not as many) measures 3 months later. This way we can attempt (sample size permitting) to analyse the longitudinal data in a way that permits interpretations of causality. In other work, we have found that increased engagement leads to improved coping and this in turn leads to improvements in psychosocial wellbeing. I am trying to see if the same holds true (amongs other questions i have) in this forum etc.

    At the end of the day, this exploratory work is perhaps the starting point and I am mindful of the limitations of such research but one has to start somewhere. Thanks for your comments - very welcome
    aimossy likes this.
  13. Dr Neil Coulson

    Dr Neil Coulson

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    Just on the point of identifying people from 'no of messages etc'. To date, all research that I have done uses self-report measures of forum engagement but PR is a wonderful forum in that more objective measures are available i.e. joining date, no of messages - i will be using these figures as part of my assessment of engagement but in any report - none of those will be individually reported so nobody will be identifiable.
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  14. Dr Neil Coulson

    Dr Neil Coulson

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    Members might be interested in this work i published with a former PhD student. It was sadly cross sectional but you will see the development of a basic model - this is along the lines of what i am trying to do - though hopefully with longitudinal element. Apols - it was the uncorrected proof but all the basic information is there.

    Neil
  15. Dr Neil Coulson

    Dr Neil Coulson

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    Here it is (I hope) N

    Attached Files:

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  16. meandthecat

    meandthecat

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    Esther I would double like you if I could
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I am having reservations about participating in this research for reasons given by others. The emphasis seems to be mainly on psychology and perception of rather intangible benefits from online support, with practical benefits significantly subservient to these.

    I note that @Mark said in his introductory message on the original thread (my bolding)

    I'm not sure if @Mark intended this, but the order in which he cites the benefits may reflect the relative importance of the cited benefits, at least to some degree.

    I previously participated in an other ME forum but was saddened and frustrated by the lack of scientific discussion and expertise there, and having to see participants suffering from following official guidance and 'treatment'. Most knew little or nothing about science, and could not follow or trust scientific info I posted because it did not come from the authorities (e.g. health service).

    The big difference to me about PR is the can-do attitude, and the impressive amount of knowledge available to tap into and discuss.

    I would like to see a more rigorous, structured assessment of the practical benefits obtained here, not just open-ended questions. I suggested some on the original thread.

    I think that account should also be taken of the fact that there are many participating sufferers who have a lot of expertise in relevant fields, and this is a place where they can develop and test theories, cite scientific research, etc. We are not all laypersons just looking for a little emotional support! Many of us are trying to expedite progress in the science of ME.
    SOC likes this.
  18. Helen

    Helen Senior Member

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    @Dr Neil Coulson

    I have a question that you might have answered already, but I haven´t been able to find it. What is the aim of the study , described as short and concrete as it has to be in official documents? Is there any official presentation of the study that we could get to read ? I think it would be of great value before giving comments that might be of some help for you.

    To me, it seems to be many psychologically oriented tests so far, though the main purpose for all people here are to get our physical ability back. The most typical symptom for ME/CFS is PEM, post exertional malaise, according to the experienced and knowledgable Dr. Daniel Peterson.

    ME/CFS is not related to more depressions than in a normal population according to Swedish ME-doctors and researchers (and also Dr.Peterson). They are surprised to se how few people with ME/CFS that have a diagnosed depression though their hard struggle with physical limitations.

    There is a scale from 1-100 that can be used to describe how disabled a person is. I´m sorry I can´t find the name of it now, but maybe someone could help with that. I am sure some people here could tell with the help of that scale how much better they have gotten thanks to advice from PR forum, if they still are here. But also there are people who are not getting better, or worse, of many reasons, mainly because of bad doctors and too little research and resources for this illness. (only a few of the more than 17.000 millions with this disease are getting some kind of help). Therefore we are lucky to have a forum of this great quality, but I wish I didn´t have to spend time being here. Would like to live my life as before I got sick.
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  19. Simon

    Simon

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    Hi

    A few thoughts on your scales:

    1. I agree with the other commenters that if you use psychological scales you need to allow for the confounding effects of ill-health, and ME/CFS specifically. Very often pyschological research in CFS fails to do that (there again very often researchers make no effort to consult with their subjects).

    2. It might be useful to include physical and real world measures too such as the SF36 scale already mentioned, and the AYME Functional ability scale which has the huge advantage of having being validated with ME/CFS patients. I would be surprised if the forum, fine though it is, has any effect on functioning, but it might be useful to sub-group forum users by illness severity.

    3.
    I'd be pretty-surprised if the forum were to have any effect in as short a time as 3 months. Apart from anything else, many people will have been using the forum for quite a while so any gains might have already stabalised. Is there a reason for choosing 3 months, as opposed to 6 months or a year? Apart from the obvious one of gettng results sooner.

    I hope this doesn't sound too critical, it is meant to be constructive and I applaud the fact that you are making such an effort to engage.
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  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'd be extremely surprised (and very disheartened) if no one reported functional improvements as a result of using the forums! In fact, I am fairly sure that people are already reporting improvements in various threads after following advice from others, or reading scientific papers and acting on them. I think I am one such, although I can't remember whether I made my own changes before or after joining (would have to check).

    It might usually take more than 3 months though, I agree. First people have to find their way around the forums and threads and locate those where the required help might be found.

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