International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

Please help with my postgrad diploma psychology research project!

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

  1. Undisclosed

    Undisclosed

    Messages:
    10,133
    Likes:
    17,242
    This thread is now closed in order to edit the thread RE: multiple rule breaches.

    Thank you.
     
    Last edited: Jan 2, 2016
  2. Undisclosed

    Undisclosed

    Messages:
    10,133
    Likes:
    17,242
    This thread was closed due to multiple rule breaches and downright rudeness that the OP of this thread did absolutely nothing to deserve.

    The member asked permission to post the research beforehand. She was warned that she might get personally attacked as this seems to be an ongoing problem when students post their research here.

    This member also identified herself as a fellow patient who has been struggling back from debilitating symptoms in order to complete a post-grad program.

    What happened here?

    This is what appears to have happened. Some members saw “psychology” and “UK” and seem to have forgotten all about supporting a fellow patient trying to climb out of the same hole we are all in. Yes, there are legitimate areas where her survey could be improved. Often in Psychology courses you are stuck using questionnaires that might not be the best but it's all you can use because you must use some sort of valid test etc. It is not the student's fault when they are constrained by what their course/professors allow.


    How did this turn into a grilling of who she is, scapegoating her just for being a psychology student as if it's her fault related to what goes on in the UK re: BPS . There is constructive criticism and then there is the rude attacking of a member because you think they have certain motives, or represent some group of people or whatever.

    Why not give polite and sympathetic feedback instead of going into attack mode?

    We have lots of legitimate adversaries, but seekinganswers789 is not the one of them.

    This kind of thing needs to stop on Phoenix Rising. Every time a research thread like this is posted, the member posting gets personally attacked, has their education insulted, members start blaming them for things they have nothing to do with etc. These are all rule breaches.

    The bottom-line is, either provide constructive criticism or don't respond. It's perfectly fine to criticize a study as long as it is providing some kind of feedback that isn't centered on attacking a member. The key thing would be to criticize the research, not the researcher.

    Any further attacks on this thread will result in being banned from the thread. Any further off-topic posts will be removed.

    Thank you.
     
    Sean, hamster336, Mel9 and 12 others like this.
  3. seekinganswers789

    seekinganswers789

    Messages:
    23
    Likes:
    26
  4. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,227
    Canada
    Hi @seekinganswers789
    I can't fill out your survey as I have a number of other diagnosed illnesses.

    For any further research you may want to consider dropping this requirement as
    prior research shows ME&CFS patients have an average of 2.9 co-morbidities,
    see: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

    So the requirement for no other health conditions combined with self-diagnosis makes it possible you are completely eliminating all ME&CFS patients. which as others mentioned may mean you are studying patients with the symptom of chronic fatigue caused by a host of other diseases or circumstances.

    Any co-morbid condition is allowed by ME criteria (Canadian Consensus or International Consensus) as well as the SEID definition (IOM), provided they are adequately treated so the cannot adequately explain the patients ill health.

    Best of luck with your studies.
     
  5. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,813
    Likes:
    19,815
    UK
    Hello @seekinganswers789

    I too cannot participate as I have a number of secondary conditions now after 40 years of this horrible disease. I suspect the stipulation that those with additional conditions cannot respond will exclude many if not most of us, especially those who have been ill for many years.

    I wish you every success in your studies. (Some decades ago not long after Noah landed the Ark I too did a psychology degree and was all set to continue to work as an educational psychologist until ME intervened. I now view that as the only positive spin-off that ME provided in my life. ;) :))
     
    seekinganswers789 and Mel9 like this.
  6. daisybell

    daisybell Senior Member

    Messages:
    1,603
    Likes:
    7,384
    New Zealand
    I'm excluded as well by other conditions.
     
  7. Richard7

    Richard7 Senior Member

    Messages:
    598
    Likes:
    1,063
    Australia
    I already mentioned being excluded by other conditions, but I hope the year goes well and you manage to balance your illness and study.
     
    seekinganswers789 likes this.
  8. Mel9

    Mel9 Senior Member

    Messages:
    644
    Likes:
    1,585
    NSW Australia
    As psychiatrists and psychologists are involved in the discredited PACE trials, many in PR are fearful of these disciplines . However, away from ME CFS, these practitioners are tremendously helpful for those with mental illnesses. And I appreciate their interest in how PR helps us to feel connected while feeling generally physically wretched. I do not know how I would cope without the support from PR
     
    Last edited: Jan 6, 2016
    seekinganswers789 and Richard7 like this.
  9. seekinganswers789

    seekinganswers789

    Messages:
    23
    Likes:
    26
    Dear @Kyla, @Countrygirl, @daisybell, @Richard7, @Mel9


    Thank you so much for your feedback. I’m so sorry that you have other conditions to battle with as well. Kyla – thank you for this statistic and very helpful article. I wasn’t aware that the rate was so high. I did consult some people with CFS/ME before issuing the questionnaire, but by chance this didn’t apply to them so it didn’t come up! The intention was so that it would make sure it would focus on CFS/ME patients only, but as you say, even those experiencing the symptoms may be suffering from something else. I will see if I can open up the criteria.... I’m learning so much through this process and really mean it when I say I’m taking all of your constructive feedback to try and improve the quality of the research.

    Thanks also to you all for your supportive words. I want to make the best of this research as possible, along with managing my own symptoms.

    Mel9 – I understand why some are far from keen to take part, especially when the word ‘psychology’ comes up. However the subject areas I’m looking at, i.e. social support and social identity seem to be relevant to everyone, regardless of their age, health status etc. but wondered if the isolation experienced by debilitating conditions such as CFS/ME, would make online groups even more important. We shall see..

    Thanks again for your feedback and support.:thumbsup:
     
    Last edited: Jan 7, 2016
    Richard7, Mel9, daisybell and 2 others like this.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    8,001
    Likes:
    12,930
    Cornwall, UK
    I would say that the issue that makes ME/CFS more isolating than other chronic illnesses/disabilities, and may therefore make online support more important, is the attitude which has arisen from the incorrect yet widespread belief that it is not a real illness. This fallacy appears to have been deliberately created and disseminated by a small-but-influential group of psychiatrists. It has resulted, and continues to result, in rejection, disrespect and a lack of effective treatment. The media have ridiculed us, friends and families have treated us with contempt, benefits are refused, leaving us in poverty, often losing our homes. Many of us in the UK dare not even mention the illness to our doctors due to a justifiable fear of how they will react. At worst, we may be pressurised into undertaking exercise, turning a mild or moderate illness into a severe one.

    There have been a significant number of avoidable, tragic deaths, including of people here.

    Thus it is not surprising that psychiatry and psychology are not quite 'flavour of the month/decade/century' with sufferers!
     
    Karena, L'engle, Valentijn and 6 others like this.
  11. seekinganswers789

    seekinganswers789

    Messages:
    23
    Likes:
    26
    Hi @MeSci

    I would agree with you that the widespread belief that it’s not a real illness is a significant factor. From what I can see, the media in particular don’t help, especially when they put a sensationalist spin on a study to make out that it’s all in our heads and we just need to 'exercise more'. It does a disservice to patients and to those around them. They just want to sell papers. It’s beyond disgraceful. As you say, the fear of not telling your GP is totally justifiable.

    Not for a moment do I want to suggest it’s in anyone’s head, as I too struggle and know it’s not! But I can understand the caution, for the reasons you’ve given.
     
  12. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,992
    This has nothing to do with this particular survey, but I still feel like mentioning this here. One of the very first things the doctor told me after giving me the diagnosis was that I shouldn't google or join support groups etc, because "it's not good for people like you to cling to each other"...
     
    Ellie_Finesse, Helen, OhShoot and 5 others like this.
  13. Mel9

    Mel9 Senior Member

    Messages:
    644
    Likes:
    1,585
    NSW Australia

    I'm glad you didn't take that advice!
     
  14. Christian Godbout

    Christian Godbout

    Messages:
    27
    Likes:
    267
    In addition to the isolation that comes from the general skeptical attitude towards this illness, there is a another form of isolation ME/CFS sufferers experience (the more severe sufferers), one that stems from the nature of the illness itself, whereby the very act of interacting with others worsens their condition.

    This is a wicked form of isolation.

    If this thought could find a way into your research project @seekinganswers789, it would be just great, all the more since most people simply can't fathom such a thing: No matter how desperately some patients need support from a group such as this one, they must refrain or else they get worse (or they simply just can't - read and write, that is).
     
  15. Sean

    Sean Senior Member

    Messages:
    3,263
    Likes:
    18,043
    There is nothing inherently wrong with psych based studies. We should not be trying to stop psych studies, but we certainly should be making sure they are done and reported properly, and kept in their proper place in the scheme of things. If we want psych studies done that way, then we have to be prepared to get involved in and support the better ones.

    Good quality psych studies accurately reporting the secondary psycho-social burden we carry will be useful to us in arguing for a better deal. They might even show that a huge chunk of that burden has been imposed as a result of dodgy previous psych studies and therapies (e.g. PACE & CBT/GET).

    We don't want to alienate and bring down the whole of the psych field, just the dodgy bits of it.
     
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    8,001
    Likes:
    12,930
    Cornwall, UK
    and it seems to be very common for sufferers to find face-to-face and telephone interactions exhausting, hence the preferability of non-live ones, notably online, where we can go at our own pace.
     
  17. seekinganswers789

    seekinganswers789

    Messages:
    23
    Likes:
    26
    @mango – I’m also glad you didn’t take that advice!

    @Christian Godbout – this is a very important point, and indeed it is a cruel and wicked thing to suffer more when one tries to socialise. Keeping social connections is a stress in itself. Whilst I would argue that online forums are more accessible than, say face-to-face options, I would agree that they too, are limited and are just not a viable option for the more severe sufferers. I will definitely be including this point into the research project. It makes me wonder how many people are suffering in silence for so long. I just can’t fathom that existence, and I really think about those people sometimes.

    Thanks for your sentiments @Sean. I agree, that psych studies can play a part, but as you say, if done in the right way. To be clear, mine is nothing to do with what causes CFS/ME, but about the effect/change it has on social connections. It seems like obvious stuff to us patients, but there may be more room to investigate as a psych study. I will also be discussing the issues around the studies you mention.

    @MeSci – that was exactly my thinking. It gives control to us to respond how and when we can, and perhaps remove some of the stress of saying all that you want to say, in the right way etc. in a face-to-face interaction as well as dealing with any symptoms of travelling to see the person, their expectations etc.
     
    Sean and Countrygirl like this.
  18. seekinganswers789

    seekinganswers789

    Messages:
    23
    Likes:
    26
    Hi,

    Following your feedback here on PR I’ve gone back to the Ethics committee and widened the eligibility criteria so that it doesn’t matter if you have any other conditions along with CFS/ME, you can still take part. As @Kyla very helpfully pointed out, the chance of having other co-morbidities is high. I'm keen to hear from as many people as possible.

    So if you’ve been interested in the research, but previously been unable to take part, please take another look at the link as your answers are really appreciated and very valuable to the research. (@Richard7, @daisybell, @Countrygirl, @Kyla and anyone else!)

    Here is the link: https://lsbupsychology.qualtrics.com/SE/?SID=SV_ba72gRPS6UXLRsh

    Many thanks in advance
    :)
     
  19. Sean

    Sean Senior Member

    Messages:
    3,263
    Likes:
    18,043
    @seekinganswers789

    Thanks for that.

    Just to double check before I fill out your research questionnaire: Is this for patients anywhere, or just in the UK? (I am in Australia.)
     
  20. seekinganswers789

    seekinganswers789

    Messages:
    23
    Likes:
    26
    Hi @Sean

    This is a great question. I would love for you to fill out the questionnaire from Australia. It is for anyone across the world - not just in the UK. In fact, it makes the research even stronger to have responses from a range of locations worldwide. So yes please go ahead.

    Thank you so much for taking part :)
     
    Sean likes this.

See more popular forum discussions.

Share This Page