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.

How You Can Help​

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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Posts relating to motivation in ME/CFS are now located here:

http://forums.phoenixrising.me/index.php?threads/motivation-and-me-cfs.24373/

Ema

 

Thank you very much everyone for your positive response, I do appreciate it. My apologies for not having chance to reply before now; I've had a bit of flooding in my flat to deal with which has rather set me back, but we'll get to all your questions in due course.

Particular thanks to Bluebell for pointing out some of the work by forum members that I wasn't aware of - great stuff!

Bluebell also asked a couple of key questions that I expect many others will be interested in, and we do want to clarify and discuss these details on this thread.

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?

In our preliminary discussions about this, the formula we came up with was that any quotes of posts by members would certainly be done anonymously (i.e. without mentioning their forum name), but also we felt that it would be appropriate to contact anybody who the researchers wanted to quote in the research to ask for their permission to quote them in the study - and not quote anybody without their permission. I think that's the best way to do this, but Anna and Neil may have more to say on this subject, and we're open to members' views on what they think would be best. We'll certainly take any other privacy-related concerns very seriously.

We have also discussed whether to cover the members-only sections, private groups, etc. Neil's intention really is to only cover the public threads, but I feel it would be good to in some way acknowledge that there may be other kinds of discussion in the less public sections of the forum and it would be good to know something about what kind of topics are covered there. That would give a more complete picture of what goes on within the forums - if we can figure out a fairly general way to do so that members are happy with. So I'd be interested in thoughts on that, but the default for now is just to cover public threads and there may not be time for Anna to do any more than that anyway.

Any further questions or comments on this subject would be most welcome.

 

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

We're hoping there will be two publications but there should be at least one. We can't really say where yet as that just depends how things work out. We're mindful that it would be far preferable for everything to be published in full open access and the plan is to publish preliminary results and further articles on PR at an early stage as the research proceeds. But it's hard to say anything definitive about publication details at this stage, there are too many factors to consider. Neil may have more to say about this.


[/QUOTE]
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.[/quote]
Thanks Tania, it's great to hear such positive comments about the value of the forums to you in living with and coping with ME/CFS. Hearing comments like this just makes my day!

 

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.

Thanks Nielk, I'm glad you share my excitement.

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 may be putting words in his mouth, but I think Neil would say (similar to what he noted at the end of the article) that what he's interested in and what he'll be studying is the benefits - and problems - and the nature and value of online peer support in general, so in that respect the details of the specific illness concerned should not need to be a particular focus for him. Having said that, I think it will probably be difficult for Neil and Anna not to learn a bit about ME/CFS along the way , and that's all to the good even if it's not really the focus of this research. Actually, it does seem fairly likely to me that there may be particular things about ME/CFS which are sufficiently unusual in comparison to other illnesses and other forums that they jump out and demand study and comment. It would be interesting to see whether that's the case or not, and how the nature of our forum discussions compares with other health-related forums. Neil has a lot of experience of other forums so I hope he'll have some interesting observations about that...but we'll just have to see what comes out...

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.

Again this is great to hear, thank you very much. You're quite right to highlight the importance of all the members and what they share here in making the forum what it is. Those of us helping to run it can help to set the right tone and keep things running smoothly, but ultimately that all means nothing without the many different kinds of contribution made by what I think is a quite remarkable and wonderful community of forum members.

 

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.

Thanks Justy.

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.

Quite so - I think so too. I recall an interesting discussion I had with Neil about how 'group therapy' and peer support is proven through trials, accepted and prescribed in a number of contexts, for a number of illnesses; so the value of people with similar experiences meeting and comparing notes - and supporting each other - is quite well accepted. (My own experience of group sessions for depression some years ago was extremely positive). So it seems very reasonable to expect that the same may be true of online support - but evidence will be needed to back that up of course, and it's also quite likely that there are significant differences and nuances in the online experience to be aware of as well. So I think it's an exciting frontier to be involved in and to study and there's great potential here.

 

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?

I can field those questions for now and Neil may add more later. First, yes the cost is absorbed as part of Neil's regular research activities; as I understand it there was no extra grant funding or similar needed...and PR isn't paying for the research. Second, as mentioned earlier we are hoping for either one or two publications in journals. And third, on time-frame, Neil can clarify the timescales in more detail but Anna's research should be complete by the end of the summer, and Neil's should be done in the next few months as well, so I think we're hoping for publication towards the end of this year or early next year, and preliminary results here in September or October this year. Neil can be more precise on that I think, but that's the rough idea.

 

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

Thanks Simon. I'm looking forward to comparing notes with you and Neil on the methodology of that particular study: the way they estimated forum use per prevalence in the population seemed...interesting...

 

Mark, there is one thought I had regarding this particular research on PhoenixRising and CFS/ME which I'm not sure how to describe, because I don't want to come across as implying anything that I am not intending to imply.

...I think I'll explain how I found this site and what my experience has been, and then describe that thought.

I am relatively new here. I lurked for a while before joining, and then lurked for a while longer before posting anything.

I first found out about this site by following a few links/mentions from other sites/blog articles.

Those other sites/blog articles were not about CFS/ME. They were about Vitamin B12 deficiency. I was trying to figure out why I had experienced sudden optic nerve damage, and I had begun to focus on Vitamin B12 and Folate as possible factors in my optic neuropathy.

The sites I was looking at and articles I was reading would often have comments about B12 deficiency by a dedicated private (not academically-affiliated) investigator of those issues (who goes by the screen name of "Freddd" on PhoenixRising). Some of what he described closely matched my own "puzzle pieces", so I tried to find his most recent internet comments, and that is what led me to check out PhoenixRising, to which he apparently moved as his main internet base (although I cannot be sure of that, it's just what it seemed like) a couple of years ago.

I then read many PhoenixRising threads by and featuring Freddd, and along the way I learned about Dr. Rich van Konynenburg, methylation, the MTHFR genes, etc.

I sent away to 23andMe to have my genes tested, found out that I do have the second worst combination of the two main MTHFR mutations (and therefore probably do have issues with Vitamin B12 and Folate), and then I ordered some blood tests to further investigate what is going on with my health. Along those lines, a number of the most dedicated, kind, and knowledgeable PhoenixRising forum members have helped me tremendously with my questions and decisionmaking.

I have also been searching more widely on the internet to learn about methylation and to decide what kind of methylation supplement protocol I might want to follow, in order to treat my optic neuropathy and other health issues. I decided to post a thread here containing the sources of methylation information that I had found, some of which had not been mentioned before on this forum, as a meager thank-you for all the help that I had received, and continue to receive, on PhoenixRising. That listing is: http://forums.phoenixrising.me/inde...tional-links-about-methylation-and-b12.23974/

I do not have a diagnosis of CFS/ME, and I have not sought one from a doctor. I have had awful fatigue and other symptoms for a couple of years, but I don't know what they are from, and I have had no help from doctors up to now. (Fortunately, my recent blood tests have pointed out a number of health issues that might be causing my problems, and there are many steps I can take now to see if I can correct them.)

I am interested in methylation, genetic research, sleep disturbances, and certain other topics that are discussed on PhoenixRising, and I enjoy chatting with lots of the members, but I cannot participate in the more focussed discussions about specific CFS/ME doctors, theories, treatments, and hardships because this is not in my realm of experience.

I don't know how many other people are attracted to PhoenixRising and end up being participants who actually don't have a diagnosis of CFS/ME and are just interested in some of the tangential topics (or in the congenial, knowledgeable company here), but my thought is that perhaps the researchers would want to tease out the multiple strands and maybe discount the folks like me, not include our range of activity here in various calculations they might do, and leave out our conversations from the quotes they pull -- because our underlying concern is not CFS/ME, we don't already have the diagnosis of CFS/ME, and perhaps are not looking to receive that diagnosis.

Maybe there aren't many people like that here -- at least ones who hang around and continue to participate.

I would expect, though, that there are a lot of "hits" on the site, and momentary visitors who don't register, who are looking for the general B12 deficiency information that led me here, and/or looking for non-CFS/ME material on MTHFR genetic mutations (which is connected also to autism, miscarriages, birth defects, neuropathy, etc.; for instance the research of Dr. Amy Yasko is talked about a lot here, but she primarily focuses on autism). These 'sidecar' populations that you kind of cater for, unintentionally and generously, might skew the numbers upwards, and skew the content of some of the conversation topics sideways, although that certainly does not take anything away from this site as one of the top CFS/ME sites in the world.

I'm not sure that I've explained myself very well, as I might have gotten a bit lost in my brain's pea-souper tonight! I think what I'm trying to say might be a recognizable factor to you. I do not mean to offend anyone or to suggest that artificial barriers should be constructed. All internet forums will have a wide range of participants who are there for a variety of reasons.

 

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!

 

Hello everyone,

Thanks for all the comments that this research has generated and i am very happy to answer any questions. Before I do, I thought i would mention that i have been researching online forums for about 8 years now and throughout this time there is one thing that is more important than anything else - and that is listening to the members who use them. For me, hearing the voice of the forum member is what it is all about as they truly know how, and in what ways, forums may impact on their lives. So for my part of the project - online survey - I shall be asking a range of questions but more importantly offering a range of response types (i.e. open ended questions) so that members can describe in their own words their experiences. I do not see value in research that neglects the member voice.

If anyone is interested I am happy to send any papers of past work i have done for you to take a look.

Some questions and answers:

1. Financial stuff - this research is unfunded. By that I mean - no organisation or charity has entered into a financial contract with me to do the research. Rather, it is unfunded - but that said - I am an employee of the University of Nottingham and so my time is paid for by my employer. Many studies by myself and colleagues are done this way and so in a sense - Nottingham Uni is picking up the bill. The online survey tool I will be using is something i already have a subscription to and so there is no additional cost attached to that.

2. Publication(s) - i believe in the value of publishing and sharing your findings with other professionals, members of support groups/forums and anyone with an interest in forums. The timetable is hard to pin down as I will need to design the survey, collect comments from representatives of PR, submit the necessary ethics application to my University ethics committee before running the survey. That said, I see much of this being done before Christmas and so once completed, written up and then submit to a journal for peer review and hopefully publication. Sadly, there is a great variability in the time it takes for some journals to deal with new submissions so that will remain an unknown for a while. However, the important point i want to make is that I plan to publish the findings of the survey but will seek input and suggestions as to what type of journal from forum members/moderators and those looking after the forum. There is likely to be several potential journals I can choose from.

3. Confidentiality/anonymity

a) the survey will have an explanation page at the start so everyone who wishes to consider participating will know what is expected of them and can make an informed decision. Those who wish to proceed will be required to tick a box indicating consent. They will also be asked to indicate whether they would mind if quotes from their open-ended responses were used in any dissemination output - this would be anonymous in the sense that all I might report would be female, 36 or male, 48 - but no other identifying information would be included. This tends to be the standard in this type of research and from experience most people, if not all, are fine with that. However, i feel it important to offer the opportunity to participate in the survey even if you prefer not to have any quotes taken from your answers.

b) the work by Anna is on messages and again we always strip away anything that can be used to personally identify the individual. Historically, we have worked with messages in the public domain (like many of those in PR) but we wish to go beyond just removing personally identifying information and ask each person whose messages we might potentially wish to quote from if this is ok? For example, we might identify a message written by A.N.Other that really captures a particular issue or theme and so it would be great if we could use that - but we would ask A.N.Other if that was ok? if not, we will seek an alternative and ask someone else.

We both very much appreciate the sensitivities surrounding the use of online messages and appreciate the fact that this is a deeply personal, emotive and difficult condition to live with - but we do want to be able to show the potential of forums and so, with appropriate permissions, we will use a handful of quotes to illustrate points. By doing so - we are allowing the voice to be heard rather than just my voice in the paper. As I said earlier - the member voice is sooooooo important to me and my work.

I do hope I have helped clarify a few things. If i have missed a question please accept my apologies - feel free to post it again or DM me and i can post reply.

All that said - very much looking forward to getting started.

best wishes,

Neil

 

Hello everyone,

Thanks for all the comments that this research has generated and i am I shall be asking a range of questions but more importantly offering a range of response types (i.e. open ended questions) so that members can describe in their own words their experiences. I do not see value in research that neglects the member voice.

If you are asking a lot of open ended questions you might want to make sure that people can answer your survey in parts over several days.

 

If you are asking a lot of open ended questions you might want to make sure that people can answer your survey in parts over several days.

Im seconding what user has said, many of the sickest members have trouble with surveys and cant do them if there isnt a way to save what is done and be able to come back and continue later answering later.

Surveys with ME/CFS people often take a lot longer to do too then those with other illnesses trying to do a survey, we are often needing more "think" and reading time . (I once did a survey that said the average time to do was 10mins... it took me 25mins).
.............

Ones like in Bluebell's situation, would like to know if the survey would be for all people using PR or just those who have ME/CFS. I know I talk to quite a few at times here who dont have CFS but have come in due to other things and they are interested like bluebell in various treatments talked a lot of about in PR, be it treating candida, treating their sleep issues or whatever. The PR (ME/CFS) community is very knowledable about so many different areas as we (ME/CFS) as a patient group have some many different issues which go on.

I think not only do we greatly aid the ME/CFS community but we also aid many other illness communities too.

 

PR isn't paying for the research.

That's probably a good thing in terms of ensuring no conflict of interest in the published findings.

 

I think that ME/CFS patient community 'activism' (many prefer the term 'advocacy') has been transformed since I became ill about 10 years ago. And I believe that this is because of the empowering nature of the internet. Internet groups were in their infancy 10 years ago. I think Phoenix Rising is about 8 years old? Before the internet, many patients were either completely or fairly isolated, relying on occasional newsletters for their information, from distant charities that didn't always represent their members' needs. Sporadic local groups, of limited means, provided some limited local support. Doctors often haven't got a clue how to deal with ME/CFS patients, and treatment offered from regular doctors is extremely limited.

The internet has increased patients' power infinitely. Now, when new information, or research, gets published, the patient community can share information, highlight good news, correct errors and challenge bad research immediately. We share, analyse and collate an enormous amount of information.

Also, clinicians and researchers are able to easily contact and collaborate with patients, and vice versa. Many researchers have reached out to patients via the forum.

And patients use forums to network and collaborate to make change offline...

Much of what the forum provides is an ability to create networks. The networks that are created do a lot of work that is carried out away from the forum. Patient community networks get involved in political advocacy, work with government agencies, and are involved in research or publishing efforts. Phoenix Rising members have had work published in newspapers and scientific journals. Some members of Phoenix Rising are scientists, researchers, or members of official advocacy organisations. And the power of the internet means that all of us can play a part in making change and helping to transform the situation for ME/CFS.

So I think that, as well as providing facilities to share information, provide emotional support, social support, share health and research news, discuss symptoms and diagnoses, to analyse research, to provide information about health care, and to share jokes, and to fundraise, etc etc etc (the list of activities on the forum seems almost unlimited) the forum also provides a means to create collaborative networks (or one very large extended network) which do an enormous amount of important and transformational work in numerous countries, all aimed at improving the lives of people with ME/CFS.

 

The internet has increased patients' power infinitely. Now, when new information, or research, gets published, the patient community can share information, highlight good news, correct errors and challenge bad research immediately.

It's not something I'd really thought about before, but I wouldn't be surprised if the internet and online forums like this one are a major force behind the gradual decline of the BPS monopoly on ME/CFS. Previously they could (and did) get away with saying pretty much anything about the causation and perpetuation of symptoms - the only people who cared enough to challenge them were a bunch of really sick people without easy access to their publications.

But now they face close scrutiny, and we have a platform from which to respond - both in informal blogs and forums, and via peer-reviewed journals where we can (somewhat) easily submit comments via their internet sites.

 

I agree that PR goes far beyond the emotional support provided by typical support groups. PR is an astonishingly rich source of information about treatments, doctors, current research, and advocacy opportunities.

Without PR, I would still be bedbound -- stuck with a string of GPs who not only know nothing, but actually believe dangerously incorrect information about my illness. My daughter -- who is currently in remission, in graduate school in engineering, and engaged to be married -- would not have finished college and would likely be bedbound as a result of the illness and the dangerously mistaken "treatment" of our local GP.

The knowledge of the pathophysiology of the illness (immune dysfunction, chronic infections, autonomic dysfunction) that allowed us to get proper treatment, we obtained here at PR. It wasn't available from our local doctors. It wasn't available at the CDC. It wasn't available from any accessible medical resource.

Information about getting access to that treatment was also not available. Local GPs had no clue (or inclination to find out) which doctors were providing appropriate medical care to ME/CFS patients. PR provided information in the form of articles and patient reports about which doctors were having some success with ME/CFS and which treatments they were using.

I think the research Neil and Anna are planning is valuable, not only in recognizing PR for its crucial contribution to ME/CFS patients, but for recording and defining PR's novel place in medical history.

 

If anyone is interested I am happy to send any papers of past work i have done for you to take a look.

Dr C,
Instead of fielding individual requests for these, maybe it would be a thought for you to put pdfs of (or hyperlinks to) some of your prior papers in your profile page area on this site?

 

I don't know how many other people are attracted to PhoenixRising and end up being participants who actually don't have a diagnosis of CFS/ME and are just interested in some of the tangential topics (or in the congenial, knowledgeable company here), but my thought is that perhaps the researchers would want to tease out the multiple strands and maybe discount the folks like me, not include our range of activity here in various calculations they might do, and leave out our conversations from the quotes they pull -- because our underlying concern is not CFS/ME, we don't already have the diagnosis of CFS/ME, and perhaps are not looking to receive that diagnosis.

Thanks for being so thoughtful and candid about this Bluebell. You're right that there are forum members who don't necessarily have an ME/CFS diagnosis, and some of the topics of interest to our core ME/CFS membership do overlap with other illnesses. We're a forum (and non-profit) for ME/CFS and NEID patients - but also our friends and family, carers, physicians, researchers and interested members of the public are more than welcome here. There are also many ME/CFS patients with missed diagnoses, and it's worth bearing in mind that there are several overlapping and similar conditions, like fibromyalgia and lyme disease, to consider as well.

So it seems to me there's just no easy way to draw the line on these matters, and although it might be preferable in some cases that a separate dedicated forum existed for other discrete and well-defined conditions, so long as the tangential discussions don't cause confusion or upset to our core ME/CFS membership, and they are related in some way to ME/CFS issues, I think it's fine that those discussions take place here. There are potentially some difficult questions for us here though, as an organization and as a forum. We will soon be introducing some new forum sections for discussion of alternative and missed diagnoses and overlapping conditions, and we'll have to all think carefully about the issues there because we are primarily an ME/CFS organization and forum; we'll have to decide how we want to maintain that focus while not excluding other legitimate related topics of discussion.

Anyway, all of that is indeed a significant issue for us I think, and one we'll have to continue to think about carefully, but as far as Neil's research is concerned I don't think it's really an issue. Neil's interest, and his study, is about how patients use online peer support, how it helps, what the problems may be, etc, and in studying the Phoenix Rising forums I don't think he will feel he needs to distinguish between the ME/CFS patients and non-ME/CFS patients on the forums. He may have more to add on this subject, but I think members can assume that if they're active members of the forums in good standing, then they are part of this community and should feel free to be part of this research.

 

There are also many ME/CFS patients with missed diagnoses, and it's worth bearing in mind that there are several overlapping and similar conditions, like fibromyalgia and lyme disease, to consider as well.

Definitely!

There also will be people who think that they have a few overlapping conditions and are trying to figure them out by searching the internet for info, and do not yet know that there is even a diagnosis called CFS/ME, but perhaps they have that first and foremost, and they will learn about it here and be able to pursue it with doctors and try new treatments.

So it seems to me there's just no easy way to draw the line on these matters, and although it might be preferable in some cases that a separate dedicated forum existed for other discrete and well-defined conditions....

I wasn't suggesting that there be completely separate forums for other conditions. (I don't think that you thought that I was suggesting this, but I just wanted to be clear about that.)

I think the present mix of topics in this forum is valuable and helpful to people. It seems to have evolved organically and is fulfilling needs. And of course people don't have to read about the topics that don't interest them.

When I wrote my long post above, I think I partially misunderstood Neil's research aim -- more on this below.

as far as Neil's research is concerned I don't think it's really an issue. Neil's interest, and his study, is about how patients use online peer support, how it helps, what the problems may be, etc, and in studying the Phoenix Rising forums I don't think he will feel he needs to distinguish between the ME/CFS patients and non-ME/CFS patients on the forums.

Ah, okay! I think that I misunderstood some of the aims of this research, because I didn't spend enough time reading your introduction to it , and I was going on a few of the later comments in this thread, which may have assumed that the study will have a slightly different focus and outcome than it is meant to have.

I was thinking that the study would partly look at how PhoenixRising is helping the CFS-ME community in particular, how it has achieved such a fast growth rate and name recognition in the CFS-ME sphere, attracted members who have CFS-ME living in many different countries, etc.

And in that sense, I just wanted to mention* that a certain proportion of PR's popularity, membership numbers, guest visitor numbers, discussion threads, mentions on other websites, etc., are not about CFS-ME as such, but about those other topics (MTHFR, genetic analysis, methylation in general, supplement use in general, etc.), and that those factors might need to be discounted by the researchers in order to get an accurate picture of the specifically-CFS-ME-related work of the site.

*I realized that this was obvious to many already!

However, if the study is more about online peer support in general terms, then of course there's no need to distinguish amongst the different populations here, the different reasons people are attracted to visit this particular site, and the different health conditions that people are seeking help with here.

In the case that the investigation and write-up will be somewhat generic and high-level (which is still very valuable!), you may want to temper the expectations of some members, who understandably are excited by the idea that the study will bring wider attention in academia, the press, the medical community, and elsewhere to PhoenixRising:
Quoting SOC just above, "I think the research Neil and Anna are planning is valuable, not only in recognizing PR for its crucial contribution to ME/CFS patients, but for recording and defining PR's novel place in medical history."
...There is so much of value regarding PhoenixRising that does deserve to be publicized, and it was easy for me to get carried away in my thoughts about what might be being planned.

 

there are many "users of internet forums" who never actually log in and post. Do you have a plan for identifying "lurkers" to see what they get from forums?

I dont post a lot on these forums so if I had not seen this you might never know that reading about the methylation protocol made quite a difference to my life. I am not fully recovered but it's made more difference than anything my doctors have done for me.

People who have found a complete solution to their health problems from internet forums tend to move on, leaving behind the more severely afflicted and/or those too poor to fund the test/supplements they need. So it is not surprising that that “active members [of the support group] reported greater symptom severity and less illness improvement than inactive members or dropouts” – but the dropouts may have dropped out precisely because their health improved as a result of using the forum. Do you ever contact the inactive to find out why they became inactive?