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New Research to Explore Role of Online Peer Support on Phoenix Rising Forums

Mark Berry introduces Dr Neil Coulson and Anna Maddison from the University of Nottingham, and their new 2-part research project with Phoenix Rising

globe-86244_640The most rewarding part of my work with Phoenix Rising is meeting people who tell me that treatment information they have found on our forums has dramatically changed their lives and their health, or that the forums provide them with valuable social and emotional support in their isolation and are a vital ‘lifeline’ for them. After all, the forums are a central part of Phoenix Rising’s work – they are the largest ME/CFS forums in the world, and how I found the organization in the first place – and the non-profit provides and manages these forums in the hope and belief that they are a valuable resource to the ME/CFS community.

But a lot of my time as a forum moderator is spent dealing with problems, grievances, and criticism. We work very hard to deal with those issues in order to make the forums a pleasant and supportive environment, but when so much of your time is spent handling the negative aspects, it’s not always easy to assess the big picture and get a reliable sense of whether the positives outweigh the negatives.

So I would love to know: just how valuable are the Phoenix Rising forums? Exactly what kind of benefits do they bring to the lives of our members? What types of conversations do our members hold on the forums, and what purposes do they serve? How can I demonstrate to potential funders and skeptical friends that the forums are a genuinely valuable resource for ME/CFS patients? How do our forums compare with other online health forums; what do we do well and what can we improve? Is there anything that our members are looking for that we don’t yet provide?

When I first met Dr Neil Coulson a little over a year ago, I soon realized that I had stumbled upon the perfect way to answer some of these questions.

Dr Neil Coulson

Dr Neil Coulson is Associate Professor in Health Psychology at the University of Nottingham, and he has been researching the experience of patients who access and use online forums for the past 8 years. His work has focused on understanding the positive ways that peer support can help individuals in times of need, and to date he has worked across a range of long term conditions including HIV/AIDS, various cancers, infertility and Huntington’s disease.

I met Dr Coulson when I was following up on a research student of his who had asked if she could post on our forums to invite our members to complete a survey for her research project. When I learned that her supervisor worked at the University of Nottingham, where I also work part-time, it was easy to read up on his research interests and contact him to assess where this research was coming from. Members – myself included – were understandably concerned and somewhat suspicious about a psychologist investigating ME/CFS, so I took the opportunity to meet with Neil. I took note of the various concerns that members had expressed, and raised them with him.

nottingham_uni_groupMy concerns evaporated rapidly as Neil and I discussed his research interests, and we quickly discovered that we shared a passionate interest in the value of online patient communities. As his homepage at the University explains, “Dr Neil Coulson is an international expert in the role of online support communities and healthcare. His work has demonstrated the important role online communities play in empowering patients as they attempt to cope with the challenges of long term conditions. In particular, he has published a number of pioneering papers which have explored the provision of social support between community members (e.g. Coulson, Buchanan & Aubeeluck, 2008).”

Neil isn’t the only researcher to have studied online support communities, but he does appear to be the only researcher in the world who has made this area his primary focus. It was clear to me from our conversations that he had a deep understanding of the issues, and of the revolutionary potential of online communities for healthcare support. The happy coincidence that he is based within a mile of my own home seemed an opportunity too good to pass up! We began to explore the possibilities for a research project…

The research to date

The only published research that I am aware of regarding the use of online forums by ME/CFS patients is a a Norwegian study which found that “individuals suffering from CFS/ME appear to be much more active in their use of online discussion forums than sufferers of other somatic or mental health conditions”, although the limited range of conditions used for comparison and the methodology of searching for forums through Google, using the Norwegian language, seem to offer rather limited evidence for this conclusion: only 12 forums were identified, 2 of which were ME forums and 2 of which had only 1 member between them. The 12 forums studied were identified by looking at the first 10 Google search results for a list of 11 conditions which the authors say are relatively common in the young adult population: CFS/ME, fibromyalgia, whiplash, electromagnetic hypersensitivity, diabetes, cancer, anxiety, depression, drugs and alcohol dependency, neck and back conditions and chronic pain. The resulting table shows that the researchers only found 2 forums, other than the ME forums, with over 500 members, but they did find 2 large ME forums with 4,000 members between them. Dividing these numbers by the estimated number of patients in the population gave them a figure for ME/CFS of 50.5 forum members per 1,000 patients (5%); 10 times that of any other forum they found.

While the paper’s speculation as to the reasons for this apparently high rate of forum use rightly noted that “individuals suffering from a stigmatized condition of unknown aetiology may use the internet to look for explanations of symptoms or to seek out alternative treatments”, realized that “many patients also report feeling dissatisfied and having negative experiences in dealing with health services”, and wondered whether there might be “something specific about those suffering from CFS/ME and their experiences within the traditional healthcare system which drives them to seek alternative sources of support and information”; the authors stopped short of concluding that these observations might suggest a major inadequacy in the healthcare provision and approach to treatment available to ME/CFS patients.

Instead, they wondered whether the problem might be that “many CFS/ME sufferers are ‘action prone’; with a tendency for lifelong traits of over-activity”, suggested that “Internet forum activity may also be reinforced by the creation of in-group identity and pre-morbid personality traits”, and worried that “strong in-group identity within discussion forums may lead users away from ‘real life’ social support, therapeutic engagement and effective, evidence-based interventions”…by which they presumably mean those same ‘evidence-based interventions’ that drive ME/CFS patients “to seek alternative sources of support and information”. They also noted with concern the finding of Friedberg et al, in a study of 32 active and 135 inactive members of one support group, that “active members [of the support group] reported greater symptom severity and less illness improvement than inactive members or dropouts” – and tellingly they didn’t question whether this might indicate that the sickest are more likely to use such support groups, rather than the support groups themselves causing their illness severity and lack of improvement.

It’s hard not to feel that behind this paper lies a fear – or perhaps an assumption – that the use of online support groups by ME/CFS patients is likely to be harmful to patients, and the authors give the appearance of being concerned about the threat that forums pose to the model of ME/CFS that they presumably support. That impression seems consistent with the authors’ note that they “wish to thank Professor Simon Wessely…for valuable comments in the process of this study” and their acknowledgement of financial support from the Institute of Psychiatry, King’s College London and the NIHR Biomedical Research Centre for Mental Health at the South London and Maudsley NHS Foundation Trust.

The paper concludes that “more knowledge on the type and quality of information provided in online forums is urgently needed”, suggesting that a critique of the information presented by ME/CFS forums is considered desirable by these researchers. In this context, an exploration of the positive and negative experiences of our own forum by an expert in online health communities would seem to be a useful contribution to the research literature.

The Big Idea

As I chatted with Dr Coulson, my head began to spin as I contemplated the potential benefits to Phoenix Rising, and to the wider community, of a research project exploring the value of the Phoenix Rising forums. We would all gain a better understanding of just what goes on in our forum discussions and what purposes those discussions might serve. We could explore the experience of forum members and find out what members value most about our forums – and importantly, what we can improve. High-quality, free, independent research into our services! We would hopefully end up with published evidence regarding the benefits our forums provide, which could be extremely valuable for promoting the forums and applying for funding. We would benefit from the insights of a (the?) world-leading researcher in the study of online health communities. And the perspective of the researchers seemed highly likely to enhance the quality of the literature on online forums for ME/CFS.

Question MarksOf course, there were (and are) still many concerns to address as well. How can we safeguard the privacy of our members and ensure that the research fairly represents the spread of activity on the forums while at the same time not intruding on the private and sensitive discussions that take place? What engagement would forum members be able to have in discussing the details of the research process? Could we ensure that members would not be quoted without their permission? Would members be properly consulted about the nature of the questions they would be asked, and have an opportunity to make suggestions about the study design?

Happily, Neil was able to reassure me on all these concerns, demonstrating remarkable understanding and sensitivity to the issues of privacy and consultation. Both Neil and Anna are keen to engage openly with members about these issues, and members will have an opportunity to raise their concerns and discuss the details of the research on the discussion thread for this article.

And so, with the support of Phoenix Rising, Dr Coulson and Anna Maddison have offered to undertake a two-part research project that seeks to explore and understand the role of peer-to-peer online support for individuals living with ME/CFS. I hope that forum members will be as excited as I am about this project, and embrace the opportunity to explore the value of our forum experience and improve the services that Phoenix Rising provides. Over now to Neil and Anna to introduce their plans for the research…

A two-part plan

The project is divided into two parts with each part being led by a separate researcher. What follows is a brief overview together with a little background about the researcher. We think it is important that you know who is involved and why they are working in this area and that you feel part of the process.

Part 1 – exploring the conversations that take place online

Anna Maddison

My name is Anna Maddison and I am currently studying for my Masters in Health Psychology at the University of Nottingham. Previous to this I studied my undergraduate degree in Psychology at the University of Dundee. My interest in ME/CFS arose about three years ago after I suffered severely from post-viral fatigue syndrome, and the following year my mother was diagnosed with ME. From these experiences of living with a similar illness myself and watching my mother struggle I came to understand the frustration surrounding the lack of concrete science and the unpredictable fluctuations the illness can take. I am fortunate that my academic background has provided the skills necessary to research and understand a lot about ME, and to now have the opportunity to carry out my own research in an area related to the patient experience of this illness.

The research I will be undertaking will be exploring the topics of conversation that arise between members of the forum. With the support and guidance of my supervisor Dr Coulson, together with Mark Berry from Phoenix Rising, I hope to identify the main areas of discussion and gain a valuable insight into how online peer support may function. I am keen to identify the positive ways through which individuals can help each other through forum engagement.

I am open to questions about this research.  If any should arise please feel free to email me at lwxalma@nottingham.ac.uk, or post on the forum discussion thread for this article.

Part 2 – listening to the experiences of forum members

Dr Neil Coulson

Hi, my name is Neil and I have been working for the past 8 years researching online forums for individuals and families affected by long term conditions. I am passionate about peer support and I hope through this work to be able to identify and describe the positive (and negative) experiences that members of the Phoenix Rising community have in relation to forum engagement. Later this summer (Sept-Oct) I will be uploading a link to a web-based survey that aims to listen to your own experiences of the forum. I will be asking a mix of open-ended questions as well as more ‘tick box’ style questions in order to build up a rich insight into your online experiences and to help us understand why peer support can be so valuable. In addition, this survey is being used as an opportunity to listen to your thoughts about how things are going thus far on the forum and whether you have any suggestions for improvement going forward.

Like Anna, I am very happy to chat to anyone who has any questions and my email is neil.coulson@nottingham.ac.uk

And finally…

We appreciate the challenges of living with this condition and our research is not intended to comment in any way about the illness per se – but rather to explore how helping each other online can make a difference. The findings from both parts of the project will be made available in summary form through the Phoenix Rising website and we hope you will welcome this opportunity to engage with us in this very worthwhile piece of research.

 

 

Sign the petition to get ME/CFS a research budget of $250 million a year!
There's a US petition and a global solidarity petition here with a long-term target of 50,000 signatures. Time we were on an equal per-patient funding basis with similar diseases!

 

{ 110 comments… add one }

  • MeSci August 12, 2013, 7:19 am
    Firestormm

    Gods I feel old sometimes :nerd:

    I wish you wouldn't. You're a spring chicken compared to me, so every time you talk about being old, that makes me ancient! 😮

  • Bob August 12, 2013, 8:13 am
    Firestormm

    Well. Learn something new every day! I was under the now realised, mistaken impression, that IIRC on certain comments related to some – I dunno – cell or gene or something! :redface:

    Ah, a translation! Thanks for that Firestormm. I'd been wondering about that one for a while.
    It also took me months to figure out what 'BPS' means! (bio-psycho-social) (I think)

    some other basics…

    lol – laugh out loud
    rofl – foll on floor laughing
    FWIW – for what it's worth
    WYSIWYG – what you see is what you get

  • MeSci August 12, 2013, 8:20 am
    Bob

    Ah, a translation! Thanks for that Firestormm. I'd been wondering about that one for a while.
    It also took me months to figure out what 'BPS' means! (bio-psycho-social) (I think)

    some other basics…

    lol – laugh out loud
    rofl – foll on floor laughing
    FWIW – for what it's worth
    WYSIWYG – what you see is what you get

    It's quite ironic that IIRC is the one I forget most often! I had to look it up (again).

    I thought that BPS was being used to mean British Psychological Society.

  • Sushi August 12, 2013, 11:23 am
    Bob

    Ah, a translation! Thanks for that Firestormm. I'd been wondering about that one for a while.
    It also took me months to figure out what 'BPS' means! (bio-psycho-social) (I think)

    some other basics…

    lol – laugh out loud
    rofl – foll on floor laughing
    FWIW – for what it's worth
    WYSIWYG – what you see is what you get

    But heaven help those using google translate to read here! :confused:

    Sushi

  • Mark August 12, 2013, 11:46 am
    biophile

    IIRC, some people moved on to a brand new forum primarily because they were frustrated or unsatisfied with the moderation here during the heated debate that occurred during the XMRV saga? And/or Cort's ties to the CAA?

    Hmm…if we're raking over that one, I think there were a number of reasons behind that breakaway, I couldn't confidently say what the primary reason was. I think there were a few mistakes made over time which built up a bit, but there was certainly a lot of anger when Cort began to warn that it was looking like XMRV might not pan out, and that issue seemed to be a key catalyst. In my opinion, the moderation at that time was of a very good standard.

    And I'd phrase it as Cort's "supposed", "alleged" or "imagined" ties to the CAA.

    From what I understand, the breakaway forum then split further after an argument between two of its founders (about moderation?), and then the breakaway from the breakaway split again…though I haven't really kept up with developments since then, and much as I do miss some of the people who left, thinking about it all does tend to remind me of this sketch (parental advisory: swearing).

  • Firestormm August 12, 2013, 12:07 pm
    Mark

    … thinking about it all does tend to remind me of this sketch (parental advisory: swearing).

    :D:rofl::thumbsup:

  • Nielk August 12, 2013, 12:12 pm

    ..and so we are the;

    lo – leftovers
    rm- remains
    us – unshakables

  • peggy-sue August 12, 2013, 12:19 pm

    It wasn't me!:D

    (I was absent when it happened.)

  • MeSci August 12, 2013, 12:23 pm
    Mark

    From what I understand, the breakaway forum then split further after an argument between two of its founders (about moderation?), and then the breakaway from the breakaway split again…though I haven't really kept up with developments since then, and much as I do miss some of the people who left, thinking about it all does tend to remind me of this sketch (parental advisory: swearing).

    :):D:lol:

    Maybe it all boils down to the fact that "We are all individuals"…:D

  • Roy S August 12, 2013, 12:23 pm

    Is everybody now allowed to give their own perspectives?

  • peggy-sue August 12, 2013, 12:27 pm

    We appear to have veered off-topic…

  • Nielk August 12, 2013, 12:32 pm
    Roy S

    Is everybody now allowed to give their own perspectives?

    As long as it is done in a respectful way. (IMO – I'm not a moderator)

  • rosie26 August 12, 2013, 1:06 pm

    lol

    Thanks Firestormm and Bob

    I finally know what FWIW means now ! Spent ages trying to work that one out, no success !

    We really need an abbreviations thread, yikes. I hadn't come across the IIRC until now, sounds more like a medical abbreviation 😀

  • Bob August 12, 2013, 1:37 pm
    MeSci

    :):D:lol:

    Maybe it all boils down to the fact that "We are all individuals"…:D

    I'm not… 😉

  • Firestormm August 12, 2013, 2:05 pm
    Dr Neil Coulson

    Hi,

    Yes – in the survey I shall be asking about engagement with the forum and that typically maps on to what some people call 'lurkers' and 'posters' – though I plan to go beyond this simple distinction and be more detailed. The comment about those who have moved on is very pertinent and something that would be fascinating to research. However, for now – the plans are to focus on current members but i do acknowledge that future research may usefully seek to explore the reasons shy people move on and drop out of forums.

    Best wishes,

    Neil

    Evening Neil,

    Don't know quite what your research will make of that little lot (above) but at least it shows we have a good sense of humour 😀

  • WillowJ August 12, 2013, 6:20 pm
    MeSci

    It's quite ironic that IIRC is the one I forget most often! I had to look it up (again).

    I thought that BPS was being used to mean British Psychological Society.

    I never could find an internet site to supply the meaning of that one, so you two have done better than me. Thankfully I have a gaming friend who knows all the abbreviations and could tell me what it means.

  • WillowJ August 12, 2013, 6:26 pm
    user9876

    Looking at the login stats for the forum is interesting from this respect
    Online now: 205 (members: 23, guests: 182)
    At the moment but this proportion of guests to members seems pretty typical of the few times I've noticed it.

    I think, though I am not certain, that those of us who tend to have a few tabs open inflate the statistics.

  • Mark August 12, 2013, 7:10 pm
    WillowJ

    I think, though I am not certain, that those of us who tend to have a few tabs open inflate the statistics.

    For some stats like number of views of a particular thread, probably, but I think those particular numbers will be unique visitors, by IP address.

  • taniaaust1 August 12, 2013, 7:14 pm
    Firestormm

    Sasha I am similar. I tend to leave myself logged in and the internet on all the time in the background. Sometimes even when I am in bed! :)

    Me too. Im often not here at all when Im logged in.

  • Esther12 August 12, 2013, 7:18 pm

    Doesn't it count you only if you have loaded a page recently? eg, if you load a really long article, then you could count as not being on-line, even while you're still reading it.

  • MeSci August 13, 2013, 1:57 am
    WillowJ

    I never could find an internet site to supply the meaning of that one, so you two have done better than me. Thankfully I have a gaming friend who knows all the abbreviations and could tell me what it means.

    I just use an ordinary search engine. That usually finds the answers very quickly.

  • user9876 August 13, 2013, 3:12 am
    Mark

    For some stats like number of views of a particular thread, probably, but I think those particular numbers will be unique visitors, by IP address.

    One thing that might be interesting is to try to locate the various IP addresses. I was thinking a break down by country would be interesting.

  • Little Bluestem August 14, 2013, 12:11 am
    rosie26

    We really need an abbreviations thread, yikes.

    Here is one that is a couple of years old. Don't follow the link in it.

  • WillowJ August 14, 2013, 1:26 am
    MeSci

    I just use an ordinary search engine. That usually finds the answers very quickly.

    for most abbreviations, I find this to be true. For some strange reason, I couldn't find that particular one.

  • peggy-sue September 11, 2013, 11:40 am

    I'm posting to say that Anna has written to me to ask if she can use a comment of mine, and to say that I am sorry, but I declined. The comment chosen looked, on it's own and out of context, like a seriously prejudiced and uneducated gut response of hatred of all psychiatrists, on the gounds of being psychatrists.
    It was a comment based on the fact that the person supported the bio-psycho-social model, which, I'm afraid to me, renders them unqualified for dealing with PWME.

    And yes, it was a grumpy gut response, using a short-cut to make my decision, but PWME have to use a lot of short-cuts!

    I felt that if the comment was used, just on its own, not being read by folk who know a bit more about me and my qualifications, it would reflect badly on us all as a community.
    (I have an 2i Hons BSc in Psychology '95 – also from Dundee uni, Anna. A very, very highly cognitively biased department, which subscribes to dualism. Fortunately, I did a couple of very good courses with the OU first, and had had a professional background in parmacological research (also at Dundee).
    It was highly amusing arguing with Alan Kennedy over the existance of the "mind" and "rational logic", over my enthusiasm for the brain and the importance of emotions and unconscious motivation.
    He was the one who got angrier and angrier and angrier, (heehee – emotions!) while I remained calm. Then he got his own back by refusing to let me do a PhD – but at least he admitted it was because "the department did not have any lecturers suitably qualified to supervise me". They didn't have any lecturers suitably qualified to teach me a BSc either, but it didn't stop them taking my Science degree fees.)

  • MeSci September 11, 2013, 12:26 pm

    I had a request to use two comments and said yes. One of them demonstrated scientific curiosity and a desire for scientific rigour, and the other was humorous, so I don't think Anna is choosing comments in a way designed to make us look bad. Maybe yours would have illustrated how frustrated our situation can make us, but I understand your reluctance. I might have felt the same.

    I did an OU Psych course – Social Psychology: Personal Lives, Social Worlds – and my font has changed since I pasted that and I can't change it!

    It covered a broad range of psych theory including Freudian BS but also biological psychology, which I liked very much!

  • peggy-sue September 11, 2013, 12:37 pm

    I'm keen to support this endeavour, it was a difficult decision!

    This is the comment.

    "Just a shame he's a psychiatrist who doesn't know what science is and who supports "evidence"-based medicine, as opposed to biologically based medicine. He doesn't understand enough to be able to criticise PACE – in fact, he supports it. I don't trust him one iota"

    What do you think, MeSci?

    I'm quite happy to discuss this here.

    The best course I ever did was the OU's Biology: Brain and Behavior, a course specifically designed to give psychologists enough basic scientific knowledge to be able to understand Gerald Edelman's theory of consciousness and Neural Darwinism.

    I had such high hopes for Psychology as a proper science after that course – but it is taking the rest of the world and academia in general an awfully long time to catch up with the OU.:cry:

  • MeSci September 11, 2013, 12:59 pm
    peggy-sue

    I'm keen to support this endeavour, it was a difficult decision!

    This is the comment.

    "Just a shame he's a psychiatrist who doesn't know what science is and who supports "evidence"-based medicine, as opposed to biologically based medicine. He doesn't understand enough to be able to criticise PACE – in fact, he supports it. I don't trust him one iota"

    What do you think, MeSci?

    My initial thoughts are that I would be quite happy for this to be quoted apart from the last sentence, as it rather negates the emphasis on scientific rigour that precedes it! It's the sort of thing I might say too, but would hesitate to type on a forum, although I probably have done so in the heat of the moment sometimes.

    peggy-sue

    The best course I ever did was the OU's Biology: Brain and Behavior, a course specifically designed to give psychologists enough basic scientific knowledge to be able to understand Gerald Edelman's theory of consciousness and Neural Darwinism.

    I had such high hopes for Psychology as a proper science after that course – but it is taking the rest of the world and academia in general an awfully long time to catch up with the OU.:cry:

    I wanted to do Brain and Behaviour but was deterred by the animal experimentation. Luckily I was able to take the module 'Issues in Brain and Behaviour' at Masters level with no requirement for experimentation, and if I recall correctly it was very human-focused.

  • peggy-sue September 11, 2013, 1:13 pm

    I did not harm the woodlice I put in the runway to see which way they would turn at the end, they all survived. Honest!

    I'm aware of your strong feelings about animal experimentation, I do understand how, in so many ways we are different to other animals (as all animals are to each other – I don't give humans any special place apart from being the most destructive species to have existed) but it was that course that showed me how much alike we all are too, particularly in behaviour.
    Not so much for drug experimentation and biochemical-systems!
    I really see tissue culture as being the way forward for that. :)

    Thanks for your opinion! I think I agree with you about perhaps it just being that last sentence that looks "iffy".
    But I was feeling "Iffy" at the time.
    (Don't tell Grumpy – he'll get jealous.)

  • Esther12 September 11, 2013, 1:31 pm

    I feel pretty put out – no-one wants to use my posts in their research!

    Peggy sue, I was just talking to someone else about the danger of speaking casually in a way which can be taken as instinctive anti-psychiatry. When I was first posting here I'd always try to be clear about distinguishing between different approaches to CBT, different psych models, etc. As I got more used to the cultural norms here, it was easy to slip into writing more casually on the assumption that people here would understand me, and that if there was any confusion, I could clear it up by discussing it.

    I do sometimes needlessly detail specific criticisms of, for example, the way in which results from PACE were presented, just to avoid making general criticisms that cannot be checked. It is an unnatural way of writing though.

    It is hard to predict how one will come across when there seem to be so many prejudices about CFS patients and their concerns.

  • roxie60 September 11, 2013, 5:45 pm
    MeSci

    It's quite ironic that IIRC is the one I forget most often! I had to look it up (again).

    ROTFL

  • roxie60 September 11, 2013, 6:03 pm
    jimells

    Hello Dr Neil and Anna. I am very much looking forward to the results of your research, and especially to Valentijn 's analysis of it! :)

    :lol::lol::lol:;)

  • WillowJ September 12, 2013, 12:05 am

    is there a survey somewhere?

  • MeSci September 12, 2013, 2:50 am
    peggy-sue

    I did not harm the woodlice I put in the runway to see which way they would turn at the end, they all survived. Honest!

    The OU normally killed all animals at the end of educational experiments (and of course research ones, which is standard).

    When I was studying, 'Biology: Brain and Behaviour' included rats and day-old chicks.

    Nothwithstanding the repeated insistence of Heads of Biology that biology students had to have hands-on experience in animal experiments to be biologists,

    • I got my degrees without such experiments :)
    • The OU no longer has animal experiments in education! :)

    Sorry – we've gone rather off-topic! :redface:

  • MeSci September 12, 2013, 2:56 am
    roxie60

    :lol::lol::lol:;)

    I feel a sub-text there – something like "You had better get it right, or else…" 😀

  • Bob September 12, 2013, 6:34 am
    WillowJ

    is there a survey somewhere?

    I don't think there is yet. I think the researchers are currently exploring the forum.

  • peggy-sue September 12, 2013, 7:07 am

    I think Esther has summed up my reservations very accurately – so I'm quoting your post here and now Esther.:hug:

    "@Peggy sue, I was just talking to someone else about the danger of speaking casually in a way which can be taken as instinctive anti-psychiatry. When I was first posting here I'd always try to be clear about distinguishing between different approaches to CBT, different psych models, etc. As I got more used to the cultural norms here, it was easy to slip into writing more casually on the assumption that people here would understand me, and that if there was any confusion, I could clear it up by discussing it."

    I do hope Anna is reading this. I think it's an important point.

  • Bob September 12, 2013, 7:42 am

    Yes, I think a lot of us are casually disparaging towards 'psychiatrists', and fail to clarify exactly what we mean. We have got into discussions on the forum previously, about our failure to clarify what we mean. Our comments need to be interpreted in the context that they are meant. We all know what we mean, but others who are not aware of the history of ME, will not know what we mean. I try to use the term "psych-lobby" (psychiatric lobby) which refers to those who work within the field of ME/CFS who aggressively push the (unproven) hypothetical model of illness that defines ME/CFS as a maladaptive cognitive-behavioural disorder based on fear, and an avoidance of exercise, leading to deconditioning. The theory is that the illness can be treated and 'reversed' with cognitive therapy and exercise therapy. There are so many reasons why ME/CFS is not deconditioning. For example, some of us lead semi-active lives, and some of us are able to do limited exercise daily, but still we are ill. And we can have sudden and severe relapses, which clearly are not the result of 'sudden' deconditioning. Relapses are a result of the symptom of 'post exertional malaise', which is a delayed and prolonged adverse physical reaction to minimal exertion that is not relieved by rest. And then there's the results from CBT and GET research which prove that CBT and GET make no difference to physical disability, and very limited difference to self-reported symptoms. But when we challenge the cognitive-behavioural model of illness, we are accused by the psych-lobby of being prejudiced against mental health disorders. This isn't the case, of course. Some of us have experienced mental health separately to the ME/CFS, such as depression and anxiety, and we have no problem with them being labelled as mental health issues, because that is an appropriate label. ME/CFS is, of course, categorised as a neurological illness by the WHO and the UK government.

    The following quote is from a post that was part of a conversation between myself, and a visitor to the forum with a professional psychological background, who wasn't happy with our apparent generalisations re psychologists and psychiatrists. I explained to the visitor that we are guilty of too often using casual language in relation to psychiatrists, and that none of us actually have bad feelings towards psychologists and psychiatrists in general. It is only the psychiatric lobby involved in ME/CFS whose work we strongly disagree with, because we believe it is damaging in many ways:

    Bob

    Members of this forum often generalise about 'psychiatrists', and I often refer to the 'psychiatric-lobby'. But we don't mean psychiatrists in general. Our comments have to be interpreted in the context in which they are meant: We are referring to members of the cognitive-behavioural school of thought for CFS, which promotes the cognitive-behavioural model of illness. (i.e. CFS is caused by fear-avoidance-deconditioning etc.)

    Of course not all psychiatrists are the same, and I think we should all be very careful to distinguish exactly what we mean when we make disparaging comments about psychiatrists.

    http://forums.phoenixrising.me/inde…n-cfs-and-depression.24786/page-2#post-378837

  • Esther12 September 12, 2013, 7:51 am
    peggy-sue

    I think Esther has summed up my reservations very accurately – so I'm quoting your post here and now Esther.:hug:

    "@Peggy sue, I was just talking to someone else about the danger of speaking casually in a way which can be taken as instinctive anti-psychiatry. When I was first posting here I'd always try to be clear about distinguishing between different approaches to CBT, different psych models, etc. As I got more used to the cultural norms here, it was easy to slip into writing more casually on the assumption that people here would understand me, and that if there was any confusion, I could clear it up by discussing it."

    I do hope Anna is reading this. I think it's an important point.

    Also though, I see no real reason to assume Anna did not already understand this – we don't know the context in which she thought the quote would be useful. Their are unfortunate prejudices about CFS patients – but I'm sure that us CFS patients can also be unduly paranoid about being misrepresented by researchers!

  • peggy-sue September 12, 2013, 8:05 am

    " but I'm sure that us CFS patients can also be unduly paranoid about being misrepresented by researchers!"
    Exactly!
    That was why I thought it would be a good idea to discuss it – I'm tied up in knots – it can be hard to untangle how much reservation is due to which different parts of my personal motivations behind it.

  • Bob September 12, 2013, 8:10 am
    peggy-sue

    " but I'm sure that us CFS patients can also be unduly paranoid about being misrepresented by researchers!"
    Exactly!
    That was why I thought it would be a good idea to discuss it – I'm tied up in knots – it can be hard to untangle how much reservation is due to which different parts of my personal motivations behind it.

    If you're not comfortable with a quote being used, then I think you should just go with those feelings, then you won't regret anything later. It would have been easier for you to make an informed decision if you had been provided the context in which your quote was being used.

  • Esther12 September 12, 2013, 8:13 am
    Bob

    If you're not comfortable with a quote being used, then I think you should just go with those feelings, then you won't regret anything later. It would have been easier for you to make an informed decision if you had been provided the context in which your quote was being used.

    Although I guess that could make it harder to do what the researcher felt was a balanced piece of work.

  • peggy-sue September 12, 2013, 8:15 am

    If it were being used to demonstrate the sort of mental and linguistic short-cuts we do use when talking with other PWME that could be used to misrepresent us if taken out of context, that would be grand.

    (and now, I need a strong cup of coffee after having managed to cobble such a long sentence together and double and triple check that I am saying what I hope to be saying….:cautious: )

  • MeSci September 12, 2013, 10:35 am
    Esther12

    I'm sure that us CFS patients can also be unduly paranoid about being misrepresented by researchers!

    I'm not – I'm just rationally paranoid! :snigger:

  • peggy-sue September 12, 2013, 10:51 am

    It was Peter Rice (who I have mentioned before as the lovely psychiatrist who helped me beat the booze) who gently told me;
    "You are not paranoid. They ARE out to get you."

  • alex3619 September 12, 2013, 11:03 am

    Context is everything. There is a shared context for most of us in this and related communities, and we are dealing with an area in which ambiguity and redefinition abound. For example, when we discuss CBT in the context of ME, it has only superficial resemblance to CBT used to assist in other disorders. Indeed, I would have never consented to CBT for ME, yet I have undertaken CBT for stress management (back in the 80s when there was really only one kind of CBT).

    In terms of the PACE trials and ambiguity, a patient can be simultaneously severely disabled, normal, and abnormal. If that isn't ambiguity I don't know what is. Of course this can be defended on the grounds that these are technical and specific definitions, but the problem is that most people will not know that, including most doctors and casual readers. So they use standard definitions a lot I suspect, and derive entirely the wrong message. The concern with many of us is that this is deliberate, and a way of promoting their research via distortion and rhetoric and not evidence and reason.

    On paranoia, if you have an evidentiary and rational basis to think people are working against you, its not paranoia. Its a realistic appraisal. This does not necessarily mean a conspiracy though. If a DWP work assessment goes against a disabled person in the UK, while there are undoubtedly deep political shenanigans going on at upper echelons, its highly likely that the staff from DWP are not in any conspiracy … but they are still working against the interests of that disabled person if the system is flawed, the assessment is flawed, and medical history is ignored.

    A lot of what I write is embedded in context. While I often take care to disambiguate or define context, on the fly I usually wont do so, and sometimes I don't get that disambiguation and context definition right. This is a very difficult area, and it always pays to ask people what they mean. Most are happy to explain.

    While I forget the details, I have many times got into long and complex debates with other patients, arguing various points until suddenly, hours later, we realize we have the same viewpoint but the language is getting in the way. If this can happen with people who are already aware of many of these issues, how much easier is it to happen with people coming from completely outside the area with little background knowledge?

  • MeSci September 12, 2013, 12:31 pm

    and sometimes brain fog appears to reduce our IQ and vocabulary by about 50%, so things just don't come out right!

  • Bob September 12, 2013, 3:15 pm
    alex3619

    In terms of the PACE trials and ambiguity, a patient can be simultaneously severely disabled, normal, and abnormal. If that isn't ambiguity I don't know what is.

    You missed a couple: Severely disabled, substantially physically impaired, abnormal, normal and recovered, all at the same time!

  • alex3619 September 12, 2013, 3:27 pm
    MeSci

    and sometimes brain fog appears to reduce our IQ and vocabulary by about 50%, so things just don't come out right!

    Oh, MeSci , only 50%? I am completely jealous! :eek::devil::alien::ill: (;) ) At my worst I have no vocabulary … it doesn't exist and communication is impossible. Fortunately that is only a little of the time, and not at all the median experience. At my best though, again very rare, my language skills are way beyond what they are now.

  • alex3619 September 12, 2013, 3:30 pm
    Bob

    You missed a couple: Severely disabled, substantially physically impaired, abnormal, normal and recovered, all at the same time!

    I haven't personally checked the recovered versus the severely disabled – so while suspecting it was right, I wasn't willing to say it. It would be nice to nail down the criteria for each in a single short article, showing again just how ludicrous the PACE trial was, and especially the media and medical response to it. How can rational people not pick up on this stuff?