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

July 22, 2013

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.

 

 

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.

donate

 

110 comments

{ 110 comments… read them below or add one }

Firestormm July 22, 2013 at 6:22 am

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 :)

peggy-sue July 22, 2013 at 7:00 am

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:

Esther12 July 22, 2013 at 7:15 am
peggy-sue

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!

Sasha July 22, 2013 at 7:30 am

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!

peggy-sue July 22, 2013 at 9:10 am

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………

SpecialK82 July 22, 2013 at 5:39 pm

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!!

Bluebell July 22, 2013 at 5:48 pm

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?

Snow Leopard July 22, 2013 at 9:45 pm
Esther12

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.

taniaaust1 July 23, 2013 at 12:21 am

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.

Firestormm July 23, 2013 at 1:31 am
Sasha July 23, 2013 at 1:46 am

Nice coverage – a good advert for us, actually!

Nielk July 23, 2013 at 6:53 am

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.

Dr Neil Coulson July 23, 2013 at 7:12 am

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

justy July 23, 2013 at 7:40 am

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.

MeSci July 23, 2013 at 8:32 am
Nielk

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:

Firestormm July 23, 2013 at 10:14 am

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 :)

Bluebell July 23, 2013 at 10:31 am
Dr Neil Coulson

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.

Simon July 23, 2013 at 1:29 pm

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:

Phoenix Rising Team

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...


Phoenix Rising Team

[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

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

jimells July 23, 2013 at 2:20 pm

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! :)

Ema July 23, 2013 at 3:11 pm

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

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

Ema

Mark July 23, 2013 at 7:15 pm

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.

Bluebell

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. :)

Mark July 23, 2013 at 7:24 pm
taniaaust1

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! :)

Mark July 23, 2013 at 7:38 pm
Nielk

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 :D , 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.

Mark July 23, 2013 at 7:47 pm
justy

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.

Mark July 23, 2013 at 7:54 pm
Firestormm

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.

Mark July 23, 2013 at 7:59 pm
Simon

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…;)

Bluebell July 23, 2013 at 9:30 pm

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! :sleep: 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.

Valentijn July 23, 2013 at 9:42 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! :)

:p

Dr Neil Coulson July 24, 2013 at 3:18 am

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

user9876 July 24, 2013 at 3:50 am
Dr Neil Coulson

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.

taniaaust1 July 24, 2013 at 4:52 am
user9876

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.

MeSci July 24, 2013 at 6:20 am
Mark

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.

Bob July 24, 2013 at 9:20 am

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.

Valentijn July 24, 2013 at 9:47 am
Bob

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.

SOC July 24, 2013 at 11:31 am

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.

Bluebell July 24, 2013 at 2:22 pm
Dr Neil Coulson

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?

Mark July 24, 2013 at 4:14 pm
Bluebell

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.

Bluebell July 24, 2013 at 9:38 pm
Mark

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.

Mark

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.

Mark

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. :)

tatt August 7, 2013 at 11:33 am

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?

Firestormm August 7, 2013 at 11:56 am

tatt very good point about the 'lurchers' and this being a public forum means you don't need to be a member of course to view the goodies :)

EllenGB August 11, 2013 at 4:24 am

I don't post much and as a scientist, have problems with some info. Fora with scientist are stronger. What we need though is for patients to get info on a subject from someone who actually knows about that subject. I'm no expert in chemistry so wouldn't interpret chemical data. A lot of other scientists appear to fele happy to interpret psych lit and they usually get it wrong. Patients should be pickier. There are psychs with ME and who know ME inside out. Don't know of a single group who have knowledgeable psychs to guide them. Ergo: confusion. Patient population has been subjected to lot of trollling which have made psych appear as major source of mess when editors are rarely psychs. They decide what is published. And they tend to decide not to publish critical articles of the CBT model. We need to deal with that. Just check out the BMJ and Lancet on CFS. Last time either published a biomed paper was 1995 (Lane, BMJ.). All editors of BMJ have not been psychs as far as I know but bullies have been going on and on about individuals rather than arguments too long. The main problem is intolerance, not psychiatry. Hence no knowledgeable psych helping big groups. Undermines advocacy.

user9876 August 11, 2013 at 5:08 am
Firestormm

tatt very good point about the 'lurchers' and this being a public forum means you don't need to be a member of course to view the goodies :)

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 have done some analysis on other non medical forums in the past and I noticed quite a few members who hadn't accessed a forum passed the day they registered. I think these forums might have required registration for access.

Sasha August 11, 2013 at 5:14 am
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 have done some analysis on other non medical forums in the past and I noticed quite a few members who hadn't accessed a forum passed the day they registered. I think these forums might have required registration for access.

I wonder how much the stats reflect the mechanics of logging in. If you don't tick the box to stay logged it, you're thrown out after half an hour. I'm permanently logged in but actually here for very little of the time in total. Some people might only bother to log in if they're going to post a message.

Firestormm August 11, 2013 at 5:37 am

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! :)

MeSci August 11, 2013 at 5:37 am
tatt

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?

I wonder whether a lot of members are too ill to participate?

MeSci August 11, 2013 at 5:39 am
Firestormm

tatt very good point about the 'lurchers' and this being a public forum means you don't need to be a member of course to view the goodies :)

There are dogs using the forum?! o_O

biophile August 11, 2013 at 8:26 am

Despite no apparent charges or arrests for the alleged criminal activities for which people in the general population are charged or arrested daily, it has nevertheless been claimed or implied that 50-100 ME militants in the UK are as dangerous as animal rights extremists, and more dangerous that insulting Islam or visiting Iraq and Afghanistan, or going over Niagara falls in a barrel. It has even been claimed that there is a dedicated police unit monitoring the situation.

Patient forums are supposedly a breeding ground of paranoia and radicalism, and occasionally there is some indication that they are being observed by the sort of people that promote or believe in the above themes. Not to mention the default dismissal of criticisms as being borne from extremist patients who do not understand the mind-body connection, fear the stigma of mental illness, and would rather everyone stay unwell than admit to their own psychological problems.

So are a few of these lurking "guests" such people who take all that literally? If so, perhaps they could stay and genuinely learn a thing or two about why many patients are frustrated and critical in general, without sorting to the common simplistic explanations and inaccurate stereotypes or woefully inadequate sound-bites?

Dr Neil Coulson August 12, 2013 at 12:47 am

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

biophile August 12, 2013 at 3:41 am

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?

Firestormm August 12, 2013 at 5:07 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?

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:

Gods I feel old sometimes :nerd:

MeSci August 12, 2013 at 6:19 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! :eek:

Bob August 12, 2013 at 7:13 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 at 7:20 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 at 10:23 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 at 10:46 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 at 11:07 am
Mark

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

:D:rofl::thumbsup:

Nielk August 12, 2013 at 11:12 am

..and so we are the;

lo – leftovers
rm- remains
us – unshakables

peggy-sue August 12, 2013 at 11:19 am

It wasn't me!:D

(I was absent when it happened.)

MeSci August 12, 2013 at 11:23 am
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 at 11:23 am

Is everybody now allowed to give their own perspectives?

peggy-sue August 12, 2013 at 11:27 am

We appear to have veered off-topic…

Nielk August 12, 2013 at 11:32 am
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 at 12:06 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 :D

Bob August 12, 2013 at 12:37 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 at 1:05 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 :D

WillowJ August 12, 2013 at 5:20 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 at 5:26 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 at 6:10 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 at 6:14 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 at 6:18 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 at 12:57 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 at 2:12 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 13, 2013 at 11:11 pm
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 at 12:26 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 at 10:40 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 at 11:26 am

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 at 11:37 am

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 at 11:59 am
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 at 12:13 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 at 12:31 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 at 4:45 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 at 5:03 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 11, 2013 at 11:05 pm

is there a survey somewhere?

MeSci September 12, 2013 at 1:50 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 at 1:56 am
roxie60

:lol::lol::lol:;)

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

Bob September 12, 2013 at 5:34 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 at 6:07 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 at 6:42 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 at 6:51 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 at 7:05 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 at 7:10 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 at 7:13 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 at 7:15 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 at 9:35 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 at 9:51 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 at 10:03 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 at 11:31 am

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 at 2:15 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 at 2:27 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 at 2:30 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?

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