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

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



The 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.



My 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.



Of 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.




Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

And don't forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.


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Comments

Nice going Mark. I very much look forward to hearing more from the two researchers about how exactly this project will meet it's aims; and I extend a warm welcome to Neil and Anna. Thanks for coming on-board :)
 
Welcome from me too. :)

Interesting too, in the light of some comments published by the weaseley school which said that participation in online support forums was an indicator of "poor recovery". :devil:
 
Welcome from me too. :)

Interesting too, in the light of some comments published by the weaseley school which said that participation in online support forums was an indicator of "poor recovery". :devil:
We're still waiting for the PACE results on membership of a patient support group as a predictor of treatment response. We had an indication from a conference poster that it made no difference either way, but it would be good to have some results. It would also be good to be able to compare and contrast effect on more objective and subjective outcome measures, to see if there was an difference.

I am a bit wary of having groups like this studied by academics, as it can go wrong and cause more harm than good, even with the best of intentions. (I briefly discussed this with Mette, another researcher looking at PR: http://forums.phoenixrising.me/inde...from-the-phd-student.22274/page-4#post-357171 )

Hopefully any judgements that are made will be discussed and debated with others on here, before being published, and presented as an expert opinion to be trusted.

But then, the greatest thing I have gained from the peer support on this forum is far greater scepticism of the way academia works, and a better understanding of the harm that has been done to those diagnosed with CFS by poorly done or misleadingly presented research - five years ago I'd have assumed research could only be a good thing! Hopefully this will lead on to work which is helpful for patients.

Welcome Neil and Anna - best of luck with not making things worse!
 
Welcome to the forums, Anna and Neil, and well done Mark for bagging such good researchers to do such an interesting project.

Looking forward to taking part!
 
I think too, that if you're doing the "Lightening-your-wallet-process" you are banned from using forums - in case you get support from the loonies there for the dangerous notion that ME is real.........
 
Very exciting stuff Mark - a great bonus to being studied is the ME/CFS education it will provide to the researchers. What a win-win all around!!
 
Dear Anna and Neil,

Welcome, and good luck with your studies!

I'm relatively new here, but I've already been struck by how much this website is a resource and inspiration for people.

I have not been a member of any other forum that is specifically devoted to one health issue/a set of interrelated health issues like this one is, so I don't have a lot of experience in the genre, but I get the impression that this is a pretty unique place.

What first impressed me was that there are so many members here who are willing to spend time and care to help other people with their questions and concerns. The help ranges from technical medical information to emotional support to shared humor.

As examples of how key a resource this site is, and how the site has influence far beyond its own pages, here are 2 external websites (blogs) that I ran across recently when I was doing an external search engine search on various "methylation" search terms, which frequently mention this site and quote information from it:
A. A blog called quixoticmeblog references PhoenixRising often. (When I searched his blog for the word "phoenix", it appeared to return 7 pages of results.) Example pages:
- http://quixoticmeblog.blogspot.com/2012/02/plunging-into-b12-protocol-today.html
- http://quixoticmeblog.blogspot.com/2013/01/my-methylation-panel-results.html
B. A blog called howirecovered also references PR often.
His summary of PR material:
- http://howirecovered.com/active-b12-therapy-faq/
His explanation of how PR was an inspiration for him:
- http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/page-138#post-356487

And below are just two examples of members of the site who have created educational tools that were at least partially inspired by PhoenixRising and then shared them, for free, with other PhoenixRising members, as well as with the general public on the internet:
A. Member caledonia who created 4 videos and posted them on Youtube:
Methylation Made Easy: parts 1,2,3,4 - videos
http://www.youtube. com/watch?v =o4uqEDK6BvM (to go to that address, take out the spaces in front of "com" and "=")
B. Member kday who created a genetic data analysis program that has become a standard tool for many on PhoenixRising, and for others too:
GeneticGenie, http://geneticgenie.org
He has recently been working with 23andMe.com on advancements regarding how his program interfaces with their customers' data:
http://forums.phoenixrising.me/inde...edback-on-appearance.23555/page-2#post-371966

I have a question regarding a couple of Mark Berry's initial concerns:
"Could we ensure that members would not be quoted without their permission?"
"How can we safeguard the privacy of our members and... not intrud[e] on the private and sensitive discussions that take place?
He said that he was reassured by you about this, but I am wondering how you will you handle these aspects of your research. Will you include quotations or other details of conversations in your published output? Will members be able to decide not to be included in your study?
 
I am a bit wary of having groups like this studied by academics, as it can go wrong and cause more harm than good, even with the best of intentions.
The key difference between this and other attempts, is that those involved are actually listening to us when it comes to making hypotheses and such. It is a big difference from an academic saying that they're going to study something regardless of how those who will be affected will actually feel about it.
 
Well done Mark for arranging it and getting some researchers going into who arent starting out in negative biased ways (something I wish could happen for all our studies done).

I have high hopes for this research.. I guess they plan to properly publish it somewhere once its completely? Im curious probably where?

"Hopefully any judgements that are made will be discussed and debated with others on here, before being published, and presented as an expert opinion to be trusted."

I was glad to hear that as often there is misunderstandings between ME/CFS researchers and the ones who have this illness themselves.

Anyway.. Im looking forward to what is will be coming out of all this. Places like PR (and PR itself) have played a huge role in my support, like many of us who just dont have good support in our lives nor good doctors. I think I'd truely be in a hole and very depressed trying to deal with my condition if it wasnt for places like these, instead.. Im living quite happily (well most of the time) with a very severe in my case illness. Ones around me cant believe how happy a person I can be even with all this. I have all you guys here to thank for that.
 
I am impressed, Mark, of how PR is always looking for ways to improve the site and the service to the patients/members.
I am excited about this project. I feel that it is a good collaboration where we can all benefit from the knowledge attained.
What I like about what Neil and Anna are proposing is the fact that they are seeking our input, advice and experience.
In my view, what is key to the success of this project is for Neil and Anna to be completely educated to the uniqueness of our illness. It is important for them to keep in mind how complex ME/CFS is and how it can involve so many body systems. Actually, everything about it is complex starting from diagnosis (which criteria?) to all the diverse symptoms that "might" be due to the illness - or they might not. The variety of potential treatments runs the full gamut of conventional and alternative therapies with no consensus as to what really works.

I think that it is because of this complexity that there is such a great need for this forum. We are learning together here and helping each other by comparing notes or by bringing new information to light.

If I had to have this disease, I am happy that it is now and not 25 years ago when there was no internet and the ability to access all this information at a click of a button. Before I discovered PR, I was sliding down fast into the abyss with the "care" of my GP who was totally misinformed about ME/CFS. Thank God I was able to find all this information which really helped me to direct my health.

I have a tremendous amount of gratitude towards PR - the people who run it and each and every member.
 
Dear all,

Many thanks on behalf of myself and Anna for your welcome. Mark has been incredibly helpful and supportive and we are all looking forward to taking this research forward. There is much that we can learn and I will dipping in and out of the forum to answer any questions and update you on the progress of the studies.

With very best wishes,

Neil
 
What a great idea, thanks to everyone involved. I will happily fill in any questionaire or join in any discussion that helps the research take place.
Before my latest relapse 5 years ago i was heavily involved in setting up peer to peer breastfeeding support groups and all the research shows that these are beneficial for mothers and in turn their babies. I can imagine on line support is a bit different -as 'normal' rules can sometimes be suspended, but all in all i believe peer to peer support to be very valuable in all areas of life.

How lucky we are to have PR now and other forums - when i was first ill all the support and info i could find on M.E came from 1 library book, with no access to other patients. In an illness where we are offered little or no medical help (or sometimes iatrogenic harm) we need to be able to conncect with other patients for support but also for advice on treatments and doctors who may be able to help us.

All the best,
Justy.
 
If I had to have this disease, I am happy that it is now and not 25 years ago when there was no internet and the ability to access all this information at a click of a button. Before I discovered PR, I was sliding down fast into the abyss with the "care" of my GP who was totally misinformed about ME/CFS. Thank God I was able to find all this information which really helped me to direct my health.
Similarly, I WISH that there had been some kind of support group available to me a long time ago. I became ill in 1995, and attempted to kill myself a year later, seeing no hope of regaining any quality of life and finding the early symptoms unbearable (especially the daily, unpredictable vomiting), not to mention loss of income and descent into dire poverty. Internet information about the illness (and I didn't know what was wrong with me until 1999 when I found out by chance from a video that was part of my undergraduate course work) could have helped me to identify the illness. Groups like this could have helped me to manage it properly instead of doing what almost all sufferers, encouraged by friends, family, doctors, etc., do - to push myself to try to get back to fitness.

How many of us might have recovered enough to get back to at least part-time work, save precious relationships, remain independent, etc., if we had had help of the kind available here? How many lives have been lost because such resources were not available...?

I would like to give a cautious welcome to this research. The researchers appear to have the right, positive attitude. The findings could help us in our ongoing, long-term battles with the psychoquacks who think that such forums are harmful (!). But I am aware that the best-laid plans...

On a positive note, PR :angel: ROCKS!!:thumbsup:
 
Dr Neil Coulson I do have a couple of questions for you if you don't mind:

Can you just confirm that the cost of this study is being picked up by your University, and that you intend to publish the results in a Journal. And also if you have a time-frame in mind from start to completion and publication?

The questions were raised elsewhere and I wanted to pass them along. Thanks in advance :)
 
Dear all, Many thanks on behalf of myself and Anna for your welcome. Mark has been incredibly helpful and supportive and we are all looking forward to taking this research forward. There is much that we can learn and I will dipping in and out of the forum to answer any questions and update you on the progress of the studies. With very best wishes, Neil
Thank you, Neil. There seems to be a lot of goodwill about the collaboration, and I'm sure it will be beneficial for all parties.

I had been hoping that you and Anna would sign up for accounts here so people would have the option to private-message you via this site instead of using external email to contact you (if they wanted to contact you privately for any reason), so I'm glad to see you have done that.

I have a question regarding a couple of Mark Berry's initial concerns that he mentioned having discussed with you:
"Could we ensure that members would not be quoted without their permission?"
"How can we safeguard the privacy of our members and... not intrud[e] on the private and sensitive discussions that take place?
He said that he was reassured by you about this, but I am wondering how you will you handle these aspects of your research.
--Will you include quotations from discussion threads or other details of conversations in your published output?
--Will members be able to decide not to be included in your study?

Apologies if Mark Berry already explained what your answers were and I just missed that part.

I noticed that there is currently an active thread here about how the site is indexed in search engines such as Google, and it explains that the content of all our posts (except for those in the "members only" part of the forum) are available to the whole world anyway, and I do appreciate that once they are in the public domain, they are open to be used/quoted by anyone for any reason.
 
First, Welcome to Neil and Anna - I'm really looking forward to your project.

What this field desperately needs is research that actually takes in the patient perspective, by asking them, just as you plan. This is in stark contrast to the approach Mark highlighted that relied solely on speculation to understand patient motives and behaviours:
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", ...Dividing these [forum member] 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...
[the authors speculate] 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.

...[They also] 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"..

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.
So the authors of this study started off with a worthwhile goal - looking at forum use in ME vs other illnesses. But sadly they simply relied on internet searches to generate their data, and at no point consulted patients using the forums as a way of understanding why patients actually used forums...
Mark said:
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.
Exactly - I'm actually still shocked that peer reviewers don't pick up such clear-cut example of likely selection bias explaining results. But maybe I shouldn't be anymore, given what else passes peer review.

And thanks for a fine article, Mark
 
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! :)