Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Research into Forum Use by People with ME/CFS

Discussion in 'General ME/CFS News' started by EllenBrady, Oct 15, 2012.

  1. EllenBrady

    EllenBrady

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    Hello,

    My name is Ellen Brady and I am a PhD student at the University of Manchester in the UK. As part of my research, I am looking at the views and experiences of patients with long term illnesses who use the Internet. Addressing this topic will add to previous research on the use of online discussion groups by patients, and help researchers and health professionals to understand the role that Internet forums play in the lives of chronically ill patients.

    In particular, I would like to know more about the experiences of people over the age of 18 with ME/CFS throughout the UK. In order to do this, I would like to interview a number of people with ME/CFS about their use of the Internet. I am interested in speaking to both frequent and infrequent Internet users, as I would like to talk to people with a range of views and experiences.

    These interviews will take place by phone or in person, whichever is easier for you, and will last 30 to 60 minutes. Everything that is said during the interview will be kept confidential. If you think you would like to take part, I can send you an information sheet with more details on the study.

    If you are based in the UK and would like further information, or to take part in the study, please contact me by email at ellen.brady@postgrad.manchester.ac.uk or by phone at 0161 275 7652.

    Thank you,
    Ellen
     
  2. Valentijn

    Valentijn WE ARE KINA

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    It looks like her PhD will be in Medicine, and her research is sociological involving chronic illness. Her undergrad degree was in psychology.

    No idea what sort of illness she thinks ME/CFS is, other than chronic :p
     
    Jarod likes this.
  3. If it's to see if such use is helpful for chroncially ill to still have social life etc and thus beneficient to their health/;ife, that's a good thing :)
    if it's soem psychobabble crap...folk won't be happy.

    Reason so many folk with ME/CFS are very bitter on forums is because of the vile bullsh*t we've had to put up with from our *OWN* governments: few things hurt and anger as much as betrayal
    plus the effects of the biological damage and changes to brain and endocrine systems (possibly also brain blood sugar levels?) and then the psyhological issues of chronic health problems, all add up to even me being a grumpy bastard at times :p

    I learned about digital art from forums, hence I got into it as a hobby, so that's very beneficial
    and I use Net to contact friends/fmaily, and learn lot of news on science etc

    Ellen
    just to note please, as ME is now an actual *lethal* illness by the defacto existance and admission of it as an organic cause of death on English death certificates, and British government classification of it and reaffirmation of that in Parliament itself, that any claims or beliefs of this being a psychological illness are completely unsustainable and maybe one day, cause for political inquiry and perhaps even legal action.
    On top of that, Hillsborough, Levenson Inquiry and others are breaking up the landscape of professional/political "omerta" and hypocrisy.
    I say this not to silence legitimate lines of research or enquiry, but as a note of warning to those out there who've forgotten their common sense, Humanity and oaths, or never understood simple bloody logic.
    Psychological and sociologicla research of disability issues, and of modern communications regarding such, is very worthwhile effort.
    Beyond that I'm very happy to help you :)

    And if I typo a lot, it's not because I'm a moron, it's because my hands *hurt a LOT*, and I have annoying as hell from of, meh, can't recall name of it, short term memory sort of "word blindness": I can't damn well see that something is typed wrong at times until I re-examine the post later on.
    Simple pride even of it's dumb (A man has to clutch at that, you know) and not wishing ot waste more time/energy are the reasons why I don't use a spell checker ;)

    (hope that's of some use to her :p)
     
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  4. Sushi

    Sushi Senior Member Albuquerque

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    Just a note, Ellen, 30 to 60 minutes is likely to be too much for many if not most ME patients.

    Sushi
     
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  5. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    hi, I'm not from the UK but I do wonder where you're going with this. Did you have something in mind on the one hand a little like The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review or or like Online focus groups as a tool to collect data in hard-to-include populations: examples from paediatric oncology?

    or on the other hand more like things I find from your institution such as Factors influencing engagement of patients in a novel intervention for CFS/ME: a qualitative study or Predictors of response to treatment for chronic fatigue syndrome or The association between tender points, psychological distress, and adverse childhood experiences: a community-based study?

    Are you, by any chance, familiar with Antibodies to parvovirus B19 non-structural protein are associated with chronic but not acute arthritis following B19 infection
    or Myalgic encephalomyelitis: International Consensus Criteria and some of the research it mentions?
    or Differences in metabolite-detecting, adrenergic, and immune gene expression after moderate exercise in patients with chronic fatigue syndrome, patients with multiple sclerosis, and healthy controls.
    or Politics, science, and the emergence of a new disease. The case of chronic fatigue syndrome.
    or Sexual abuse, physical abuse, chronic fatigue, and chronic fatigue syndrome: a community-based study.
    or the 2011 Trans-NIH ME/CFS Research Working Group State of the Knowledge Conference
    or Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue
    or Oxidative stress levels are raised in chronic fatigue syndrome and are associated with clinical symptoms.
    or Increased neutrophil apoptosis in chronic fatigue syndrome
    or Biomarkers in chronic fatigue syndrome: evaluation of natural killer cell function and dipeptidyl peptidase IV/CD26.
    or EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients-A case control study
    or Distinct cerebrospinal fluid proteomes differentiate post-treatment lyme disease from chronic fatigue syndrome.
    or Visible and near-infrared spectra collected from the thumbs of patients with chronic fatigue syndrome for diagnosis.

    thanks,
    willowj
     
  6. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Yes, this could lead to self-selection of less ill/more functional patients and possibly skew her research. (or is it only results that are skewed?)
     
    Min likes this.
  7. taniaaust1

    taniaaust1

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    Ellen.. I hope you come back and see the responses on this thread. The group you will be interviewing.. WILL not be the very sick ME/CFS group.. the very sick group.. there is no way many of us at this site could talk to someone on phone for 30-60mins.

    Typing posts on a forum is far far easier (as the mind can keep wandering or stopping without it causing big issues) then when using a phone where if ones mind drifts for just a few seconds one needs to ask the other to repeat what they said or just mummer an agreement while not even knowing what the other has just said (to cover up that one blanked out).

    Im often lucky to last 5 or 10 mins on a phone, its extremely tiring and hard (due to the amount of constant substained focus involved..which causes burn out) to follow convos and talk on a phone.

    Please note this fact for others if you ever publish your study..... that you are actually studying the ones who are weller due that they needed to be able to talk for a long time on a phone. I'd call the ones who could talk on phones which you are studying.. the minor CFS/ME group.

    Your study would be even more interesting if it was catering to the ones who are more disabled by this illness and often hence due to that, reliant on the internet for nearly all their social aspects etc. To this group forums are even more important for patients to gain medical info (as some of this group cant travel well to doctors), social support etc etc..
     
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  8. currer

    currer Senior Member

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    Is this sort of study the best use of scarce resources for medical research?

    I have two friends who died due to ME related causes - both young, both men. Quite apart from seeing many friends with ME suffer for years from lack of basic medical understanding of, and interest in, their disabling and prolonged sickness and the medical inability to understand or alleviate their symptoms.

    ME is a public health disaster. It affects the young and previously healthy, it disables, it destroys family life..

    No-one who understood the urgency and seriousness of this problem could propose such a study.

    We come to these forums because it is one place where we can find acknowledgement of these truths without politically motivated distortion of the discourse - which desires to disempower us and miniimise the reality of this illness.
     
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  9. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I recall an article on a survey of online habits of me/cfs patients in the last six months which was very disparaging to patients, inferring that if they were so sick how come they could spend so much time on the internet. There was also mention of patients using the internet to harrass researchers etc. I would be reluctant to take part in any such survey unless I absolutely trusted the researchers and knew what end use they had in mind. But then again maybe I am too cynical, lol.
     
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  10. EllenBrady

    EllenBrady

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    Hi everyone,

    Thank you all for your responses. Any feedback, insights or questions are very welcome, and I am grateful to all of you for taking the time to respond.

    To answer some of your questions, my research is looking at the role that social support from the Internet plays in people's lives. Usually, patients will receive social support from their family, friends and health professionals, and might attend some support groups or community groups. This support can take a few different forms, such as informational support, where someone might tell you about a new treatment, or emotional support, where someone might sympathise with you or share their own experiences.

    For patients with ME, as many of you have pointed out, finding people who have had similar experiences or have a similar perspective about your illness and its origins and symptoms can be difficult. Talking to people online can be a good way of getting in touch with other people with ME, and can be easier than travelling to meet people or talk to them face to face or on the phone. For these reasons, I am looking at the views and experiences of people with ME who use Internet forums, and how these compare to other sources of social support. While this is not a study that is addressing the cause or treatment of ME, it may help researchers, doctors and other health professionals understand the experiences of people with ME a bit better and learn about the sources of support and information used by people with ME.

    I realise that 30 to 60 minutes is quite a long interview (for anyone!) and I would be more than happy to do several shorter interviews, such as three ten minute interviews, if someone would like to take part but would not feel able to do it all in one go. I apologise for not saying that in my original post. I would like to speak to people with a range of views and experiences to make sure that the sample of interviewees is as broad as possible, but as you've said, that will involve certain amount of self-selection, where people who have particularly strong views about the topic or are at a level of 'wellness'.

    If anyone would like me to send them on a information sheet with more details about the study, then please send me a email (ellen.brady@postgrad.manchester.ac.uk). If you have any more questions then I'd be happy to answer them, either on here or by email.

    Thank you all again for your comments and I'm sorry about my inability to multi-quote!
     
    taniaaust1 likes this.
  11. Jenny

    Jenny Senior Member

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    Sounds like an interesting piece of research Ellen. Internet forums are a huge source of support for many of us, and hopefully work like yours will help in making them even more helpful.

    When I was able to work, I had a PhD student who was doing research on internet-based career counselling, and her work was able to usefully inform the developers of relevant websites.

    Jenny
     
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  12. jimells

    jimells Senior Member

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    EllenBrady - Thanks for your interest in our little patient community. As you probably now realize, you have stepped on a hornet's nest. I expect you understand that so many of us are cynical about research because of the huge volume of junk that never should've been published.

    We are desparate to see research that can directly inform our medical treatment and highlight how poorly we are treated by the institutions that claim to exist to help us. Please, use your training and resources on research that points in that direction.

    In my experience, half the doctors tell me I'm not sick; I just need 'therapy' and exercise. The other half says, "we can't help you and we don't know who can". Most folks here have had similar experiences. The maltreatment, disdain, ignorance, and lack of treatment directly prolongs our illness and suffering. A study that examined the attitudes of the medical industry and which treatment protocols are prescribed, and which are ignored, could shine a bright light on this despicable situation.

    Are you up to the challenge?
     
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  13. taniaaust1

    taniaaust1

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    Which all in turn leads so many of us having to get our support and often medical advice online and thou forums etc.. what she's studying is tieing in with all that. So this study could be important for those out there who currently let us down big time to be able to see that if done well. All "good" eg non biased research into ME/CFS could end up being helpful no matter what area the study is in.
     
    Jenny likes this.
  14. Snow Leopard

    Snow Leopard Hibernating

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    This is an excellent point and it can be a notable omission from studies like this. The very ill group tend to be socially isolated by their illness and forums play a key role. Not in terms of research (of treatments etc) or other uses that medical practitioners may think we use the internet for, but merely peer support. It can be a big deal to connect with others to see that you are not the only one who has to face serious difficulties due to disability.

    @EllenBrady,
    I'm not sure what the scope of your research is, but an interesting question would relate to how groups with different illnesses use the internet to organise in terms of advocacy and investigate the idea that those with more severe illnesses may have less of a voice in society as they are too ill to take part.
     
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  15. user9876

    user9876 Senior Member

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    moderated with many others
    EllenBrady
    One thought is that rather than have a verbal interview you could use a forum like structure to ask questions. The other approach is to do some sort of coding and discourse analysis on a forum. I know I've spoken to people in the past planning to do this type of thing on other (non illness related) forums.

    Then as a researcher you should address the question of what are the different usage patterns for different chronic illnesses and if you are looking at things like social structures being formed it is worth comparing with other forums.

    I've seen some research on internet use and ME and it has been really bad with little understanding of how people use the internet.[/quote]
     
  16. Jarod

    Jarod Senior Member

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    Hi Ellen,

    I'm opting out.

    I really can't see how a "forum use survey", coming out of the UK, is the best place to start earning trust from this community.

    This group has been undermined for 30 years. We been struggling with a biological disease made to look like a psychological disease by the establishment. Our diagnosis (CFS) has been diluted, changed, and given a meaningless name.

    The best reseach does not get funded and the best doctors never get the support they need to move ahead. No progress has been made in the diagnosis or treatment for decades.

    The most useless research somehow gets spread all over the major media information outlets and twisted in the most unfavorable light to it's unsuspecting consumers.

    Allow me to suggest a better place to start your survey.

    1) You might survey government agencies/universities/patients to explore what is causing so much interference researching biological treatments of ME.

    2) You might survey government agencies/universities/patients about what is interfering with productive diagnostics research.

    3) You could survey of journalists, and find out why/how the media continues to spread so much mis-information about our disease.

    4) Why there is no accountability from any government agencies for failing so miserably for so long.

    5) What is preventing to research money going to doctors who have demonstrated an ability to move the ball foward and work in patients best interest.

    Sorry to be so blunt, but giving input for what may really help, if you have any say in the matter.

    May truth and love guide you,

    Jarod

    edit: It's not hard to imagine your study turning into a nightmare for patients. Are they going to use your study to cut us all off disability because we can sit up in front of the computer? That's all I'm saying.

    You will find a extremely competant group of helpful people here if you decide to redesign your study for something taht is more likely to benefit us. Otherwise, please keep in mind how this information could potentially work against us. :thumbsup:
     
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  17. snowathlete

    snowathlete

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    Hi Ellen,

    As you can no doubt ascertain from the above posts, people with ME/CFS are a bit skeptical and distrusting of people's motives and beliefs in situations like these. Not without reason as we have been very badly treated by society, and have suffered alot. Nevertheless, I hope you don't take people's slightly prickly responses to heart. We're pretty nice people when we aren't in defensive mode.

    You might still find it difficult to overcome people's distrust because of some of the nonsense papers published about the illness in the past, particularly in the UK. If you persevere though and demonstrate views that are compatible with the reality of the illness then you'll be onto a winner and gain fast support.

    I think our use of the Internet is pretty standard for a chronically Ill group, except perhaps that with zero treatments available under the NHS that try to address the symptoms we have people probably turn to forums such as these for options sooner than with other conditions where there are better treatments available. My main reason for coming here originally was to find out about new research into the illness such as that being undertaken by Prof Ian Lipkin on the pathological cause of the illness. of course it's nice to meet other people in the same boat as you as well.
    Best
     
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  18. Valentijn

    Valentijn WE ARE KINA

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    We've also read published research papers twisting and bending results to absurd lengths. Such as how internet forum use interferes with the ability of the faith healers (psychologists) to miraculously make us well again. And how our physical functioning must be irrelevant to our lives and our medical condition if questionnaire responses say we think we feel better, but objective measurements say we're no more active than before.

    We get burned repeatedly by poorly-conducted and highly-spun psychological research, and I think some of us are worried that this will happen again and don't want to risk contributing to that.
     
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  19. Enid

    Enid Senior Member

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    Well reason we use the "Web" - not any old web but PR sites here bringing together latest science/medical research findings - known pathologies, experiences of treatments - how they have aided etc. Completly unknown (by design or ignorance in UK medicine) to understand the biology and we try to self treat. In fact the amount of discovery far surpasses any local GP or the UK NHS knowledge who turned a blind eye in favour of "all in your mind" since the Royal Free outbreak. We know the culprits.

    Ellen - look around (it may take weeks) and follow the scientific discoveries here.
     
  20. EllenBrady

    EllenBrady

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    Hi again everyone,

    Thanks again for all of your comments and responses. You've raised really interesting points around directions for the future of my research and other potential questions to consider and I will definitely take them on board.

    One question that's really hard to answer is what exactly I'm going to find and how that's going to be interpreted. While I can promise you that I don't have a hidden agenda and will not attempt to spin the findings, I can't promise you what I'm going to find because I haven't carried out the research yet. I am interested in the views and experiences of people with ME, and the findings will consist of the views and experiences of the people who contribute to this study. As many of you have noted, that will involve a certain amount of self-selection and will by no means be representative of the views of everyone with ME, or even everyone with ME who uses the Internet, but it will give an idea of the opinions of a sample of people with ME. This will hopefully in turn give researchers, doctors and other health professionals an idea of some of the experiences of people with ME, which may give them an insight into some of the areas that you've mentioned, such as how to work in a patient's best interest.

    Many of you have mentioned specific studies about the Internet and ME - if you know any further details about those studies or even had the titles to hand and could send them on to me, that would be greatly appreciated. I have tried to read as much as I can but I am sure that there are articles that I am missing.

    I also want to add that there is absolutely no need for anyone to opt out. This research is not associated with Phoenix Rising (though they kindly gave me permission to post here to about it) and no-one is under any obligation to take part. If anyone would like to do an interview, then that would be great, but I am also happy to answer questions and to receive comments and suggestions on here or by email (ellen.brady@postgrad.manchester.ac.uk) regardless.

    Thanks,
    Ellen
     
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