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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. Esther12

    Esther12 Senior Member

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    @Dr Neil Coulson : Hope we haven't scared you off.

    I expect that the cynicism of patients might be a bit unusual, especially considering that it seems you are instinctively pro-patient, and pro-patient empowerment. There is certainly less (no) faith in researchers than is normal, but I hope that this is seen as something which can be helpful as well as challenging.
    MeSci, WillowJ and Bob like this.
  2. leela

    leela Slow But Hopeful

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    I'd like to add that, much in the way this illness shifts significantly over time, so has my interest/purpose in visiting patient forums.

    I think this important fact about this illness, this forum, and life in general--its changeability and continuous state of flux--is the main reason, imo, studies and questionnaires of all kinds are flawed.

    Every single survey I have ever filled out I have had to "fudge", because even with "never", "sometimes" "often" or such things, I may have answered totally differently when I was well, in the first three years of the illness, or now. Or six months ago. Or last week. The part of human beings that remains stable and untouched by experiences of illness or wellness is not addressed in surveys.

    When I first came to the site, it was entirely to gain scientific insight and treatment information, which was new to me and harder to find elsewhere. Slowly, as I became sicker and more isolated, a sometimes-greater need for social interaction was met here. Both motivations wax and wane even now.

    Honestly, with all due respect, I think it is a waste of time and energy to studies/surveys like this. The information culled is automatically skewed and inaccurate because it is trying to make static something which is by its nature dynamic, and trying to quantify something which is unquantifiable in its mutlifaceted, multilayered complexity.

    In fact, if one shifts vantage drastically, one can see the forums as just one example of the way in which human beings are a collective intelligence operating in a state of dynamic, spontaneous, seamless collaboration between its differentiated parts for the benefit of parts and whole simultaneously. This would be a most interesting thing to study, perhaps.

    Human beings are not merely data. They are not the merely the data they exchange, either. Focusing on the data is a narrowing that almost entirely strips the subject of meaning, even while endeavouring to uncover that meaning.
    SOC, golden and rosie26 like this.
  3. WillowJ

    WillowJ Senior Member

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    I had a draft auto-saved on this thread but it disappeared.

    To answer your specific question, I think the Brief Cope form is fine, but none of the others (that you mentioned in the OP). Thanks for asking, and thanks for your interest in us. I think some of the ones in the other paper you posted looked interesting, too, but I didn't really have the energy to look at them properly.

    I think it would be best to include a narrative section, much more than in the other example papers (of the approx. two I looked at). Surveys invariably tell someone else's story. We don't usually get to tell our own story. Using lots of narrative would allow us to tell our own story.

    Some examples of papers using narrative would be the FDA's report, and this.
    Last edited: Dec 3, 2013
    Valentijn, Bob, rosie26 and 1 other person like this.
  4. Dr Neil Coulson

    Dr Neil Coulson

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    Dear all,

    Over the past 2-3 weeks you have been providing a lot of input with regards possible scales etc and directions for the research as well as expressing many reservations. I fully appreciate and welcome all thoughts and the challenge facing me now is to try and consider all these points and determine what the next step will be. This is not going to be an easy task since so many scales appear to be unhelpful (for the reasons described in previous posts). I hope in the new year to have arrived at some decision and will be able to report back.

    In the meantime - wishing you all the best for the festive season.

    Neil
    WillowJ, Esther12, SOC and 3 others like this.
  5. golden

    golden Senior Member

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    ^^ this.

    The survey will result in lies.

    It doesn't matter to me whether those lies will benefit me or hinder me.

    One reason i visit this forum was to be free from this.

    I am not understanding why PR keeps on requesting psychologists to study 'us'.

    'us' being a mass of misdiagnosed, missed diagnosis collective. The MDMDC.

    Best
    Golden
  6. Mark

    Mark Acting CEO

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    To be accurate, Golden, PR (actually, me) has only ever invited one psychologist to study the forums - Neil Coulson, to do this study.

    It's important that whatever we do is at the least acceptable to most members, so we will work hard on this to address as many of members' concerns as we possibly can.

    As to why, you only need to look at this paper to understand the need for good research in this area.
    Valentijn likes this.
  7. golden

    golden Senior Member

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    For the sake of accuracy then:

    Is this research being conducted by a one man band or a team?

    Also the psychologist before this was perhaps not directly invited, but was given permission to study 'us'.

    This was occurring well before I was made aware of it.

    What 'good psychological research ' can you possibly hope to gain?

    Best
    Golden
  8. Esther12

    Esther12 Senior Member

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    Best of luck with it Neil. Hope you have a fun x-mas.
  9. Esther12

    Esther12 Senior Member

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    An argument that even patients with CFS should be spoken to honestly and clearly, and should be allowed to make their own informed decisions about their health care?

    While it was mainly political action and activism which led to improvements in the way in which gay people were treated, 'supportive' psychological research was also used to provide a degree of cover for changes in the way in which the psychiatric profession 'treated' homosexuality.
    Valentijn likes this.
  10. golden

    golden Senior Member

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    1)Can you link me to the Surveys used on gay people which achieved the outcome you suggest?

    2) would you expand on how this survey will mean people with*** CFS*** are then 'spoken to honestly and clearly, and should be allowed to make their own informed decisions about their health care?'



    thanks
    Golden.
  11. Esther12

    Esther12 Senior Member

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    I'm not really sure what you're asking for a link to. eg: Evelyn Hooker's work was important for helping undo some of the harm done to gay people. I'd assume that a lot of the specific surveys used then are no longer in use today though.

    This thread has some posts from me when I was reading about this stuff: http://forums.phoenixrising.me/inde...hronic-fatigue-syndrome-a-controlled-s.19947/

    2) I don't think that any survey would do so, and I am deeply sceptical about the real validity of a lot of the questionnaires used in psychology. I also think that a lot of psychological work is more 'political' than 'scientific' - but that's not to say it cannot be of value. I think that lots of political research can be valuable or harmful, depending on how it is done and why.
    Last edited: Dec 19, 2013
  12. golden

    golden Senior Member

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    Thankyou Esther12.

    Yes , I was asking for a direct link to the Surveys. Thought it would be helpful.

    I will look over your link though shortly.

    I do answer some surveys even if i do have to 'fudge' a bit.

    I think a useful and much needed survey would be to address physical issues not psychological ones.

    For example, surely a very simple one could be :

    1) Have you been diagnosed with M.E.?
    Have you been diagnosed with C.F.S.?

    2) By your G.P. or consultant?
    3) Have you been tested for Coeliac Disease?

    Because I have never been tested for Coeliac disease. And there are more like me.

    I know it gets complicated because the testing isnt 100%.

    But current NHS guidelines state (i think) - thst CD should be ruled out.

    So, you have been offered CBT without getting appropriate physical testing done?

    This is an obvious area where the very BASICS are not being followed and a survey would highlight that.

    Then the survey can be expanded so data can be collected on what tests we have been given, the test ranges used , to help improve and highlight physical testing problems occurring.

    One could include asking about MRI and SPECT scans.

    I am very concerned about the misdiagnoses occurring.



    Even the POTS issue could be addressed in a survey.

    Maybe this has all already been done or wouldn't work.

    Best
    Golden
    Bob likes this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    This survey is looking at the use of Phoenix Rising and how such use has helped/not helped with various issues. The original thread is here.
  14. golden

    golden Senior Member

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    Thankyou MeSci. I hadn't seen that 'original thread'.

    Golden
    Last edited: Dec 19, 2013
  15. Mark

    Mark Acting CEO

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    Neil Coulson is leading the research. The first piece of research was done by a student of his, the next will be led by him, as explained in the original article. I don't know whether others will do some of the work and/or appear on the list of authors. Neil can answer that better than I.

    Even this is not true, though less misleading than the false claim you made earlier. A couple of people have approached us (quite some time ago) and asked if they could post a thread inviting members to complete a survey for some research they were doing. We said yes they could post about that; members were then free to discuss the surveys there with the researchers, and complete the survey(s) if they wanted to. Those surveys were not about Phoenix Rising forums and all we gave permission for was for them to post their forum thread about their studies.

    I am not sure which you are referring to. We published an article and had at least one forum thread and discussion about this research before it began.

    Too big a question to answer properly now but this was covered in the previous articles and threads.

    Personally I am looking for an honest and objective report on what types of functions the PR forums serve in members' lives, I'm hoping to gain some insight into what our strengths and weaknesses are as a community and what aspects we can improve in order to better serve our members' needs, and I'm hoping for evidence about the benefits and functions of forum membership in patients' lives. I also hope that solid evidence about the nature and value of the services we provide may eventually prove helpful in obtaining grant funding. Finally I anticipate that this research is likely to provide a useful and much more balanced counterpoint to some previous ropey and rather negative research into forum use by ME/CFS patients (in Scandinavia in particular).

    The overall aim is to explore the benefits of membership of an online community in patients' lives. Neil's previous research has demonstrated the value of community membership when studying forums for other medical conditions and I expect his research findings on us to be broadly similar to his previous studies, but of course we don't pre-judge what we expect him to find and I'm looking forward to the details and how we compare with other communities he's studied.
    MeSci, Kina and Valentijn like this.

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