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Please help with my postgrad diploma psychology research project!

Discussion in 'Active Clinical Studies' started by seekinganswers789, Dec 31, 2015.

  1. seekinganswers789

    seekinganswers789

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    Hi, how are you doing?

    My name is Stephanie, and I also have chronic fatigue syndrome (CFS). I am back at university part time and working on an exciting project around CFS and online forums.

    If you have 5-10 minutes (and may take less or more time depending on individual need), you are 18 years old or older, and experience the symptoms of CFS (either with or without a formal diagnosis), and have no other physical or mental diagnoses, or currently staying in hospital, go ahead and take a look.

    You can click the link below to see information first before deciding whether or not you wish to take part. There’s absolutely no pressure to do so, and even if you do, you are able to withdraw at any time without giving a reason. Your answers will be anonymous and kept confidential.

    https://lsbupsychology.qualtrics.com/SE/?SID=SV_ba72gRPS6UXLRsh

    If you can participate, it would be a huge help and contribute directly but anonymously to CFS research. If you have any questions about taking part, please let me know by contacting me on thomps20 at lsbu dot ac dot uk. Feel free to forward this link to anyone else who you think would be eligible.

    I'll be on this thread to answer any questions you may have.

    Thanks so much in advance for your time! :)
     
    Last edited: Jan 2, 2016
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Why is this based in a psychology department? Most of us want solutions to our physical illness, not yet another 'study' into how it affects social aspects of our lives.
     
  3. Mij

    Mij Senior Member

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    The questions are quite ridiculous for people suffering from a serious neuro-immune illness.

    In most ways my life is close to my ideal.
    In most ways my life is close to my ideal. The conditions of my life are excellent. I am satisfied with life. So far I have gotten the important things I want in life. If I could live my life over, I would change almost nothing.
    The conditions of my life are excellent.
    In most ways my life is close to my ideal. The conditions of my life are excellent. I am satisfied with life. So far I have gotten the important things I want in life. If I could live my life over, I would change almost nothing.
    I am satisfied with life.
    In most ways my life is close to my ideal. The conditions of my life are excellent. I am satisfied with life. So far I have gotten the important things I want in life. If I could live my life over, I would change almost nothing.
    So far I have gotten the important things I want in life.
    In most ways my life is close to my ideal. The conditions of my life are excellent. I am satisfied with life. So far I have gotten the important things I want in life. If I could live my life over, I would change almost nothing.
    If I could live my life over, I would change almost nothing.
     
  4. seekinganswers789

    seekinganswers789

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    Hi MeSci,

    Thanks for taking a look. This study is in no way intended to imply that this is a psychological illness - I have it myself, and like many , have lost a lot - my job, flat, had to drop out of uni (until recently). I'm a psychology student, so if it really was that 'easy', it seems that a psychology student could work it out. Clearly it's not that simple.

    This study looks at online forums and social support. There is a lot of literature indicating that there are associations between patients with all kinds of health conditions (brain injuries, stroke, heart disease etc) and outcomes, and the social support they receive. As social isolation is a big factor for people with CFS/ME, it's possible that online forums (such as this one) may be important and I was interested to see if there are any associations with wellbeing.

    I hope this answers your question.
     
    Last edited: Jan 2, 2016
    simeyss and justy like this.
  5. seekinganswers789

    seekinganswers789

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    Hi Mij,

    Thanks for taking a look at the questionnaire. You're under no obligation to answer all of the questions, and you are welcome to withdraw if you wish to. Just to note, some of the questions have been validated externally and can be used for other contexts, so if they seem a bit odd, that's why.

    Again, no pressure to answer them if you don't wish to.

    Many thanks
     
  6. helen1

    helen1 Senior Member

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    I'm curious as to why so many of your questions relate to fatigue, as for many patients, this is not a central issue. You have no questions about more pertinent symptoms such as gut issues, muscle weakness, sensitivity to noise and light, pain or dizziness. I'm wondering why.
     
  7. Denise

    Denise Senior Member

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    Sorry you have had health problems.
    How and when did you come across PR?

    As for the study -
    Without confirming a diagnosis, how do you know that respondents meet any definition of ME?
    Without careful characterization of participants, how can you say that your study will meaningfully reflect the situation of people with ME?
    We have had far too many studies that include vague diagnoses or include people thinking they may have ME. This leads to murky results that may negatively patients.
     
  8. sarah darwins

    sarah darwins I told you I was ill

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    I don’t think your title is well-chosen, Stephanie. More appropriate would be “Please help me with my undergraduate psychology research project”. The title as is comes across as a wee bit patronising.

    People here know how to make a difference: we give a few pennies any time we have them to well-established biomedical research programs which are working hard to figure out the mechanisms of the illness. Like this one: http://cfsresearchcenter.org/index.php?option=com_k2&view=item&layout=item&id=71&Itemid=722

    Good luck with your studies and happy and healthy new year.
     
    Wayne, MeSci and helen1 like this.
  9. seekinganswers789

    seekinganswers789

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    Hi Denise,
    Thanks for your kind words. I have found PR, and other similar forums, soo useful, and I just found them through online searching. I knew there were others going through this! I'm also aware that PR is very thorough and from what I can tell, up to date with everything, which is great.

    Thanks for looking at the study. Whilst I appreciate that there is a potential weakness in the study in that it's not exclusive to those with a formal diagnosis, and we can't check this, in order to reach as many people as possible who often can't leave the house because of the debilitating symptoms, the online questionnaire method can mean more people can respond, than say, in a face-to-face interview.

    I'm also focussing on people the answers from those who have experiences that are/ similar to CFS/ME, as we know people may think they have it but cannot get the diagnosis for some time. Even those who do not have it, but have similar symptoms, they may still benefit from the social support the study focuses on, so they would not be excluded from the potential benefits (if there are any).

    I hope that helps answer your questions :)
     
  10. A.B.

    A.B. Senior Member

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    You would want to make sure that people actually have a diagnosis of CFS, which should be made only after going through the lenghty medical investigation that is required to exclude all other diseases that could be producing the symptoms.

    It is a common misconception that CFS is all about "being tired all the time". Therefore if you do not require participants to have a formal diagnosis made by a doctor you cannot be confident that the data collected actually comes from patients with CFS.

    If you don't do this, then presenting your results as pertinent to CFS would be misleading.

    I hope you're aware that correlation does not equal causation. If you found a positive correlation between membership and illness severity, there are multiple possible explanations, the obvious explanation being that sicker patients are more likely to seek support in a support group. A causal effect can not be discovered with a poll like this.

    You would have to actually run a carefully controlled trial where patients are randomly assigned to a support group or an adequate control activity.
     
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    If this study is being carried out in the UK, why are the questions all in American? 'Gotten'; 'live my life over'...

    Oh - I have been so satisfied...distinction-grade Masters degree in medical science and condemned to poverty selling plants on ebay...

    There have been other studies into online communities. I think the last one involved Dr Neil Abbot(t?), but I can't find it on here now.

    EDIT - correction - Neil Coulson (see later for link)

    I commented on that thread that there were no questions about people joining online communities to gain practical and scientific knowledge and to collaborate on taking research forward, or campaigning and pressurising governments to fund more research, or getting clinical guidelines corrected, etc., etc. Although I believe that the reply was that the research permitted people to add such info, I was not sufficiently convinced that it was a good use of my time, so didn't participate.

    I doubt whether this one would be a good use of my time either.
     
    Last edited: Jan 1, 2016
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  12. seekinganswers789

    seekinganswers789

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    Hi Sarah,
    Thanks very much for your feedback. As you can see, I've changed the thread title as you've suggested. I really didn't intend any thing patronising, I just wanted to indicate that peoples' experiences were very valuable for the research. Clearly there are a lot bigger research programs going on, that people give a lot of their time too, so please accept my apologies.

    Thank you for your kind words of support, and a very happy and healthy new year to you too! :)
     
    sarah darwins and MeSci like this.
  13. Esther12

    Esther12 Senior Member

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    Haven't you heard... this is Phoenix Rising?! QMUL are currently presenting us as ferocious destroyers of research, and it seems that thanks to patients working online, we're in the midst of a fairly significant chunk of poor quality CFS research being debunked.

    http://www.virology.ws/2015/10/21/trial-by-error-i/

    Leading psychologist James Coyne has recently taken it upon himself to fight to have patient's concerns recognised... it seems that a few posts here are leading to the imminent collapse of the British medical Establishment and a fundamental reform of psychological research... maybe. That counts as a pretty worthwhile outcome.

    I'm sympathetic to students who are expected to do these sorts of questionnaire based 'research projects' as a part of their course, but imo, it would be much better to focus on picking apart the problems that they're are with this sort of research than doing more of it. This probably isn't what your supervisor wants to hear, and is unlikely to help you get a qualification though.

    It looks like Spada @ LSBU wasn't able to spot the problems with the PACE trial:

    http://forums.phoenixrising.me/index.php?threads/cbt-and-get-are-effective.37030/#post-590186
     
    MeSci, TiredSam, leela and 6 others like this.
  14. seekinganswers789

    seekinganswers789

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    Hi A.B.


    Thanks for your feedback. I agree this could be a potential weakness in the research, and I’ll be sure to write about it in the report.

    I agree that correlation is not the same as causation. As you say, there are many other potential factors which will affect the results, and so the write up needs to be very carefully considered. It would be great to investiagate this with a carefully controlled trial, and although this isn’t really possible at my level, there doesn’t seem to be any other similar research, so this could in fact be a starting point to inspire a PhD student or bigger research trials that you've outlined.

    I hope this addresses some of your concerns, and thanks for taking the time to have a look. Have a great and healthy new year.
     
  15. seekinganswers789

    seekinganswers789

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    Hi Helen1

    Thanks for your questions. I totally agree with you, that it would be useful to have more questions around symptoms. However, I was advised that in the introduction, people can decide from there whether they have CFS/ME rather than checking they have it with lots of symptom questions.

    The fatigue is in there just to get an idea of the severity with that symptom, and the dilemma is that to have more would mean it makes the questionnaire a lot longer and may possible exacerbate symptoms overall and make the questionnaire much less accessible (and a key point is to make it accessible).


    I do appreciate the need to have more around other symptoms, and I’ll be sure to discuss this.

    Thanks for your time, and a very happy new year.
     
  16. Denise

    Denise Senior Member

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    Pardon my skepticism but if PR and other forums have been so useful, how is it that you are only just now posting on PR.

    Accurate characterization of those being studied is essential to good research. I know that 84-91% of patients are not diagnosed and yet in order to be able to accurately diagnose them, a careful definition must be used.
    Simply asking for responses from people with similar symptoms to those of cfs (and there are many who would question the existence of cfs as an entity) or ME muddies anything to do with ME.
    And ME is not cfs.

    I would also suggest that most people (patients or not) are social beings to some degree or another. So it is reasonable to assume that people who have to endure any form of enforced isolation because of disease/other likely benefit from social interaction and support.
    I hope you can convince me that a study to demonstrate this is actually necessary rather than just something reasonable people would assume.
     
    MeSci and helen1 like this.
  17. seekinganswers789

    seekinganswers789

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    Hi MeSci

    Thanks for your feedback. I agree, some of the grammar could be tweaked, but because the wording has been externally validated, I’m not in a position to change it (a postgrad diploma student!).

    I’m really sorry that things have changed so much for you. Please feel free to ignore some of the questions or to withdraw from the study if it’s unsettling in anyway. It’s not intended to, at all, but I appreciate that some may be close to home.

    I’ve come across a couple of studies on online communities, but not quite in relation to some of the theories I’m investigating. I will look up Dr Neil Abbot(t) though, thanks for the name.

    Again, it’s totally up to you if you wish to take part, and it’s no problem at all if you want to ignore the whole thing!

    Wishing you a happy and healthy new year.
     
  18. seekinganswers789

    seekinganswers789

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    Hi Helen, I’ve created a new user id just for the purpose of the research. This is the case for other groups, as part of the ethics guidelines.

    I agree, we are social beings, and there is a lot of evidence that social interaction and support are important. With the changes in technology, and the increasing use of online forums, it could be argued that the way in which we are interacting and giving/ receiving social support is changing as well. For those whose physical social interactions are often reduced/ limited, I wonder about the significance of the specific role of online forums and their affect (if any ).

    Again, it’s up to you if you wish to take part, but if it’s not, it’s no problem at all!
     
    Last edited: Jan 2, 2016
  19. eafw

    eafw Senior Member

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    A much more interesting study would be why is it that psychologists and the medical establishment in general are so keen to propogate the idea that we can "think ourselves well" or cure disease with "positive" lifestyle changes (eg having more friends ?) Most of that sort of literature is bunk.

    There is a good case to made that social factors such as poverty and access to health services will affect the course of an illness, but I don't think that's what you're asking here - the questionnaire doesn't suggest that - and the main difference is that a proper understanding of those factors would lead you not to question the patients but the social institutions that are witholding resources that we need to recover.
     
  20. seekinganswers789

    seekinganswers789

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    Hi Esther12,

    I agree that there are some profound issues with some CFS research. As you say, we have to follow certain structures so I thought it would be good to learn more about CFS research along the way!
     
    Last edited: Jan 2, 2016

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