The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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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 eafw

    Thanks for your feedback. I hear what you’re saying, and as somebody who has also experienced this, I would not intend to write a project to say CFS patients just need positive thoughts to heal.

    I appreciate this is a big and complex issue, but I think the data is only one part of it, but how you interpret and discuss it is the key part. Ultimately, this is a small scale project that cannot tackle the whole conundrum, so I will just do my best!
     
  2. Sea

    Sea Senior Member

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    In what way do you expect that the knowledge you gain from this going to benefit CFS research?
     
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  3. seekinganswers789

    seekinganswers789

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    Hi Sea, it would contribute to my CFS research project. If it's good perhaps somebody else may extend the project later on. It's obviously not big clinical research like some of the other studies on here, but perhaps it's a seed!
     
    Last edited: Jan 2, 2016
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear Stephanie,
    Can you explain how you might be able to answer that from polling PR? How would you establish 'making a difference'?

    I appreciate that you are trying to learn about research but if you were my student I think I might be keen for you to learn first that research very often cannot achieve what it sets out to achieve. Maybe the most important conclusion to draw from PR is that its members know a lot more about psychology than academic psychologists! As a physician that is certainly my impression.

    When I had students doing a dissertation I always gave the best marks to those who asked a question and ended up saying it was the wrong question and another question might be more interesting - i.e. they had learnt something about questions. Your supervisors might be less lateral thinking, I realise, but one can perhaps hope.

    But to get back to the point. Can you explain how you are going to get information that answers your question? I would be interested to hear if you can.
     
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  5. L'engle

    L'engle moogle

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    Yeah that's a bit problematic for many of us. I understand you really mean well. I myself am very reluctant to answer any survey where the information could be 'used for other contexts'. While your own research may be very admirable, the survey answers could be taken out of context and used by different entities, for their own subjective research ends.

    I'm sorry that you are getting so much negative response to your research but I'm wondering, have you considered why your research might be getting funded and who else might have an interest in collecting psychological data from ME/CFS patients?

    Unfortunately people in this community are cautious for very good reason. We've had to be.
     
  6. Richard7

    Richard7 Senior Member

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    Well, I cannot help. I have other conditions: migraine; visual impairment etc. So I have not gone past the first page and don't know what sort of questions you are asking and cannot really comment on them.

    I will say that I find the second, third and fourth opinions that you can get in patient communities can be very useful. I remember finding this particularly useful with migraine, as other patients knew much more about the side effects of the medications I was taking or being advised to take than my non-migrainer doctor ever would.

    With CFS, where most doctors know nothing, or "know" to many things that are not true, the need for those second and third opinions is greater.

    As I have mentioned elsewhere on PR I had major issues with anxiety and panic that I and my health professionals were treating as psychological for years (4). It was only on this site that I learned about POTS, and only when I was trying to deal with POTS that I discovered that the anxiety was caused by the POTS.


    It changes the fact of isolation, with respect to access to opinions and knowledge, but it is just correspondence.
    It's not going to replace a traditional social network. No one here is going to check on me if I have a fall or other accident and fail to make a social engagement or help me move house.

    I cannot say that it changes my sense of social engagement or isolation. That really is a health issue. When I am better I see more people but feel more isolated, when I am sicker brain fog makes most thought and feeling impossible.

    To be clear: when I say that I see more people and feel more isolated when I feel better, it is just that I do and think and feel more when I am better. One cause, feeling better, leads to many consequences.

    Are you distinguishing between facts of isolation and senses of isolation?
     
  7. barbc56

    barbc56 Senior Member

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    @seekinganswers789

    What might be a more helpful approach is to share your experiences about your illness with others here on PR.

    This might generate more questions/hypothesis to be investigated. I realize that time may be of the essence for you, been there, done that, but in the long run it might add some depth to your research.

    I speak as someone with a postgrad degree in psychology as well as a patient. While my education was valuable, very valuable, in many ways I have learned more from being a patient.

    Best wishes.

    Barb

    This is not to imply that you have to be a patient to understand what we are going through but it certainly helps. There's not just one way to learn but you probably already know this.
     
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    And don't be put off or intimidated by any of us here.
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    @seekinganswers789

    I'm sorry to hear that you may have ME. I haven't read this thread but I'm sure by now you are getting a picture of how debilitating this illness can be.

    To help you know more about ME for your own health (ME can often be much like MS in that some people get an episode of illness that seems to remit and even years later get more ill and the ME symptoms progress) here is some info you may not yet be familiar with:

    The US Institute of Medicine report on ME:
    http://iom.nationalacademies.org/~/media/Files/Report Files/2015/MECFS/MECFS_ReportBrief.pdf

    Clinical guidelines (pg 2) while not perfect often used to guide a diagnosis of ME: http://www.meao.ca/files/ME-Overview-English.pdf

    Millions of people have been suffering for decades many severely and no on in medicine has listened while our quality of life has greatly diminished and indeed some of us have chosen to end our life and more of us have contemplated it. Not because we are mentally unwell but because we are so very physically sick and all we have been offered is pyschologising of our illness (false illness beliefs) and psychological treatments--for decades of severe illness.

    What I'm trying to say is we are up to our eyeballs in psychological help. We want and need real treatment--we want our life back.
    This is not about our being just really tired. And many of us might feel it's a real disservice to this community to be offered the lucky chance to be part of more psychology no matter what kind how well meaning or how well done.

    I suggest you spend some time getting familiar with Leonard Jason's work on the subject. Hr has pretty much covered the psych aspect of ME for a long time.

    best wishes to you in the new year.

    For your own research into ME for your own health you may also want to know that progress is being make into biological research by Ian Lipkin/Mady Hornig--Columbia University https://www.mailman.columbia.edu/pu...-evidence-chronic-fatigue-syndrome-biological

    And the Open Medicine Institute http://www.openmedicinefoundation.org/mecfs-severely-ill-big-data-study/

    These links may help familiarise you with real ME as opposed to the propaganda that the news media has reported for decades.
     
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  10. Valentijn

    Valentijn Senior Member

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    If you have a useless sample, how is the situation at all improved by making it a larger useless sample?

    So what are you studying? ME? CFS? Chronic fatigue? This is all sounding terribly muddled, to the extent that I can't imagine anything coherent coming from the data being gathered.

    And the fatigue questions are pretty irrelevant and impractical to answer. I have no idea if you're actually asking about "fatigue", which is not a central issue in ME/CFS, or if you want us to pretend the questions are asking about something relevant instead, like disability.

    Are you fatigued? What's your experience of ME/CFS that has lead you to believe these are appropriate questions to use in researching ME/CFS?
     
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  11. sarah darwins

    sarah darwins I told you I was ill

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    Well done, Stephanie. It's best to be straightforward about these things.

    Sorry if you find the reception here frosty but if you've spent time on the forum you can't have expected too much else. Many members here are extremely ill and have been for many years or decades. Most of us would say that ME has destroyed our lives. There are people here on feeding tubes, people who can barely walk, people with serious breathing difficulties etc etc. Properly diagnosed ME, for want of a better expression, is a devastating illness.

    Many people here feel that psychology has done nothing but harm to patients, especially in the UK, where behaviourists have seemingly gone out of their way to discourage biomedical research and to actively discourage frontline medical doctors from carrying out any sort of biomedical testing.

    Plenty of us have had to go to the private sector, often travelling overseas, in order to get medical testing done. The results are often eye-opening.

    Although your research is pretty innocuous in itself, and may have some value, the fact that yet again we are confronted with a psychological perspective on ME/CFS is enough to rub salt into deep wounds. My feeling, and I think it's shared by many here, is that psychology has been far too involved in ME and, for the present at least, should be actively discouraged from taking any further interest.

    There is some great biomedical work coming online now and it's high time that was given primacy. The situation is changing fast in the USA. We would all like to see the UK following suit.

    There's no harm in seeking to ask if engagement with online forums is helpful to chronically ill people. Please just consider opening up your research to all chronic illnesses, not just this one. As far as I'm concerned, that issue is of no less and no more importance to people with ME than to people with any other serious illness.
     
  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    PS

    Asking about fatigue (like sooooo many before you) is pointless. Fatigue is way too general a symptom--and is a symptom of ever so many illnesses. I fail to see what possible value this could be for us people with ME. What contribution do you imagine this making to this very ill community?
     
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  13. taniaaust1

    taniaaust1 Senior Member

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    It's completely wrong to even refer to your study as being anything to do with CFS if you are accepting people without diagnoses as many people with undiagnosed mental health conditions who may be in denial about them and choose instead to think they have CFS may enter your study so this isn't a "CFS" study (or just those who are undiagnosed with other things) and its completely dishonest portraying it as such.. Rather you should just say you are studying the affects of online social support in those who simply have "fatigue"esp if you are refering to fatigue in your questions and not putting focus on the other CFS symptoms too.

    Too many people out there do not know what CFS is and confuse this with "chronic fatigue' which is something which is seen in so many different things. So please portray your study connecting that you are studying people with fatigue and not CFS ones.
     
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  14. taniaaust1

    taniaaust1 Senior Member

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    Why wouldn't it be any different for us then any other disease which leaves patients often housebound and bedridden? I don't understand why you are even separating out CFS with this as to be able to have social interactions is an important factor for any severely disabiling disease.

    Of cause online social interactions are important to people who are hostage in their homes like prisions due to being too ill to even be able to leave their houses or without the support to be able to do so eg I cant leave my house unless I have someone with me to ring an ambulance if I collapse and to push my wheelchair which ME/CFS has forced me to have to have.

    Now though being able to have social interactions at times are important to us, this doesn't mean at all it "cures" or actually helps our ME/CFS in general. Feeling very happy cause we've just had a great chat to someone, doesn't make us well.

    (many of us, myself included have previously taken part in study just like you are doing now. It isn't uncommon but thought Ive filled out more then one questionaire on this before, I haven't seen research published in this).

    You say you don't want those with physical illnesses to do your survey, that doesn't make any sense at al if you are studying ME/CFS as most of us with ME have been given physical coexisting conditions due to the ME/CFS eg most of us have testable autonomic dysfuction on tilt table testing so have comorbid diagnoses (issues with our BP and/or heart regulation), others of us are showing immune problems on testing as part of our ME/CFS. I'd be discluded from participating due to the severity of my ME/CFS causing physical conditons.
     
    Last edited: Dec 31, 2015
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  15. Snowdrop

    Snowdrop Rebel without a biscuit

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    @CFS_for_19_years

    She mentions that it's a post grad diploma. I think that might mean that she's in the US and the diploma is online. I believe it would otherwise be a degree. Although I suppose the same complaint holds for the online programs.

    I can understand how people gravitate to something that they have a personal connection to and I'm almost inclined to say we are a special case. So much psych research has been proffered no matter the results it doesn't offer any respite from the illness itself. When I come here to PR I definitely do not come here to discover a new psychological insight. What does it matter if the truth is that forums prove to be helpful by way of research data.

    As a sick person who wants to get well I have real trouble understanding how so much of what goes on in psychology to be meaningful.
    I feel PR to be of help to me, it seems almost common sense that I would being house bound. It speaks to the nature of being human and being social which is to say just pretty ordinary and normal.

    If psychologists want to understand other human beings and what they're about I suggest hanging out at the pub. There's no reason to need to quantify what you learn since there will always be exceptions and the best way for the next person to discover the same is to be a life long student of human nature--by interacting with others. After all what are you going to do run around insisting that people with chronic illness really ought to hang out on forums? If they want to do that I think they can probably figure that out on their own.
     
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  16. Richard7

    Richard7 Senior Member

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    It is a degree, if you go to the universitiy's website and look around you will find that the postgrad research degrees they offer are Phd, Msc, PgDip and PgCert.

    According to wikipeadia in the UK a PgDip is 2/3 as much work as a Msc but considered to be at the same level.

    https://en.wikipedia.org/wiki/Postgraduate_diploma
     
    Last edited: Dec 31, 2015
  17. Sea

    Sea Senior Member

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    I can see that it would be helpful to you but I'm sorry I cannot see how it would be of any benefit to patients. Not now and not in the future. Some people find it helpful to be part of a support group and some people don't. I doubt they need a psychologist to tell them that.
     
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Got the name wrong - it's Neil Coulson. Here is one of his threads.

    Thanks for the health wishes, but after 20 years it seems unlikely. I don't think that wishes will help, however well-meant.

    I hope that you recover sooner. As you may know from reading threads here, younger people have better prospects. My only hope for reasonable financial security now is a state pension this year.
     
  19. snowathlete

    snowathlete

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    I don't think we should be too harsh on the OP. I agree with many of the comments about the host of flaws in this undertaking but of course she is being taught/supervised by people in psychology, who as evidenced by the published research over the years, have exceptionally weak scientific standards when it comes to CFS.

    What is needed of course is exceptionally high standards in such a disease due to its complexity and to tighten the focus of the research such that patients might be willing to take part.

    As it is, I expect most feel like me that they don't want to encourage weak research and learning as the disease desperately needs strongly robust research and learning. This is true whether it is psychosocial research or not, but we've seen a lot more weak psychological research being produced.

    From the OP's point of view the question she might have to ask herself Is whether her target is just to get the qualification (in which case, given psychology's low standards of scientific rigour in CFS this ought to suffice, assuming she can convince enough people to take the survey) or whether she wants to produce something of any actual value alongside that aim.

    As an aside, if I were a psychology student then I think I would be looking at the more obvious angles, which bizarrely have not been covered much but where truth exists. 1) that psychology is proven of no help in CFS despite the promoted behavioural theories which claim it should help. 2) that patients with CFS might benefit instead from honest and strict psychological support on diagnosis purely to come to terms with having such an awful physical disease.
     
  20. seekinganswers789

    seekinganswers789

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    Dear @Jonathan Edwards, @minkeygirl, @Large Donner, @L’engle, @Richard7, @barbc56, @Snowdrop, @Valentijn, @sarah darwins, @taniaaust1 @CFS_for_19_years, @Sea @MeSci @snowathlete @TiredSam, @Iansbergen, @Mij


    Thank you for all of your comments and for the helpful names and links with further information.


    My intention is to do a fairly simple project on CFS, and I appreciate that, as with most research, there are a host of weaknesses that need to be addressed. I am thankful for your comments so that I can discuss them in the report, for example looking at people with fatigue rather than CFS.


    If you are interested, I’m a part time postgraduate diploma student, which means that I’m doing the equivalent course as an undergraduate.


    My aim is just to get this study done and get through the course. I am struggling with symptoms myself, so just being able to hand something in is my goal. At the same time, I wish to learn more about CFS/ME and online forums as they have helped me, personally, though of course there are other things they don’t do because it’s online.

    I know there is so much more research, which you all seem to be very knowledgeable and up to date about, and clearly there will be issues with the study at this level. In terms of usefulness, I wanted to at least raise awareness around the topic with my tutor.


    I’m just trying to do my best given that last year I struggled to write an email.

    If you would like more information on the theories I’m looking at in addition to the information given on the information sheet which comes up when you click the link, please see the debrief at the end of the questionnaire. The term wellbeing is used in the literature as it covers various positive psychological outcomes, but I’m specifically looking at life satisfaction.


    Again, the plan isn’t to tell anyone to do anything in the report, just to discuss the data in a careful and considered way and raise some points for further discussion.


    I am not funded by anybody to do this, but doing it as part of the psych diploma course. I understand why people are very cautious and that even doing the survey may make symptoms worse, so of course, if that’s the case, please don’t feel obliged to take part and thank you for your time.

    Thank you.
     
    Last edited: Jan 2, 2016

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