Advice and comments requested on forthcoming online survey

[Esther12]

One thing to re-emphasise is that the purpose of the research is to explore how participation in the PR forum may help members. The challenge is to identify appropriate scales and methods through which everyone feels they can communicate these benefits. In the open-ended questions this is easy - and allows opportunity to discuss any issue of relevance and importance to a member. In terms of using standardised validated scales - it is important to use accepted scales that can be used in the scientific report writing and eventual publication. For example, if participation reduces perceived loneliness than a standard measure of loneliness would be needed. The challenge is there is so many to choose from, a lot of differing opinions etc. Not going to be an easy task so thank you for all your comments

re validity: I'm not entirely confident that a lot of validated scales are truly valid measures of what they claim to be assessing. That's not to say that these scales are of no value, but their results can be misused, and there is probably more concern about this amongst CFS patients than most other patient groups.

With a lot of this stuff, you will probably come up against an unusual level of caution from CFS patients because of past problems. Even if you're keen to encourage patients being informed, and making their own decisions about how to respond to health problems, there's still concern about how others could try to interpret your findings, and concern about whether the judgements made about how patients should respond to ill health (what is adaptive and what is mal-adaptive) may be used as reasons to limit the real autonomy of patients.

eg of worry with the loneliness example: Could it be that lonelier patients are more likely to spend time posting, so there's a positive association here, even if posting leads to a reduced sense of loneliness? *checks post count* - I'm fine though! Having seen problems in the past, I'm instinctively cautious about the ways in which questionnaires are often used.

It does sound like a tricky area of research. Thanks for trying to get our views on it, and best of luck with it all.

PS: I'm afraid that I have not had a chance to read the paper posted, so all that I said above could be utterly redundant! Fingers crossed.

 

[Mark]

I'm not sure if @Mark intended this, but the order in which he cites the benefits may reflect the relative importance of the cited benefits, at least to some degree.

I really don't think there's any significance to the order in which I put the words 'lives' and 'health' in terms of prioritising them relative to each other. If anything, I think I tend to put the word I want to emphasise most at the end of a list because I suspect it sticks in the mind a bit more that way. But more often, in a sentence like that, I would base it on how it scans and sounds - how easy it is to read aloud.

But anyway, to me it's fairly evident that we are here with a variety of aims, and the forums fulfill many different functions for different people. Whilst improved health would of course be the most valuable thing that any of us could hope for, emotional support and sharing ways of coping with our situation are also very important for many people. For some people, a place to collaborate on projects or organise political campaigns might be the most important thing we provide. I would ideally like the study to explore and measure all the benefits (and perhaps also identify any downsides) of our experience as Phoenix Rising forum members. What is the most important thing that people are looking for here, and what kind of benefit does the forum most provide in practice? Those to me sound like good questions to study. If we know the answers, that might help us with our thinking about how we should organise the forums and what new services and projects we should work on next.

Demonstrating statistically improved health overall of forum members, over some time period, compared with non-forum members...I guess that would be the holy grail but it sounds quite ambitious to me. I suspect it might be more revealing, and more likely to be productive, to hear individual stories of how members have found information on the forums that has had dramatic beneficial effects on their health. I mentioned that I've heard a few anecdotal accounts of that nature, and of course I'd be very interested in hearing some more stories like that.

I'm not sure whether any standard measure of physical functioning is going to give you that insight into how the forums are helping members' health. Long-term members may well have worse physical function than recent members, if it's the sickest who are more likely to stick around here. Some proportion of patients in general might improve over time but that might not tell us anything about ME (similarly to what PACE did). So it would take a very well-designed and long-term study, with some kind of solution to the problem of what constitutes a 'control', to get good data on this question of whether a given forum, in general, improves members' health. I think that's the holy grail and perhaps the next big step for his research as far as Neil's concerned, and I'm sure he'll do what he can to pursue that aim with us if possible - and I think getting some [baseline?] SF-36 data would be a very good idea towards that aim.

I do share members' concerns about the weaknesses of some of the anxiety and depression measures etc - I quite agree that when I answer some of those questions, I quite consciously find myself saying in my mind "well, yes, but that's just because I can't do that any more, not because I feel bad - and you're going to interpret my answer to that question wrongly, aren't you?"...so there's a genuine problem there, no doubt about it - but at the same time, if we could investigate whether forum membership tends to increase or decrease those kind of factors, and know how much they may be a problem for a proportion of our members, that would be valuable information I think. So we need to find the right ways of measuring these factors and that's where I'm hoping members can help, by positively suggesting specific alternative scales that don't have those weaknesses.

 

[Bob]

Many good points have been raised above.

I think there's been some discussion about whether it would be helpful to distinguish forum users based on the length of their illness, or the length of their forum membership.

I agree that such distinctions may help to give some meaningful insights, as I think recently diagnosed patients and long-term patients probably use the forum in different ways.

Recently diagnosed patients may be looking for information about their illness, treatments and illness managing techniques.
Such information may lead to short-term changes in health, e.g. if symptom management techniques are implemented.
Whereas long-term patients have most of the information that they require about tynd use the forum for other purposes, such as social support, following the scientific literature and sharing news about research developments etc etc etc.

Also, the social support to be found on the forum might make a big difference to the lives of newcomers to the forum. Whereas, for long-term members, the social support may be an essential source of comfort but is a constant.

As a long-term patient, using the forum will not now lead to any short-term improvements in my illness or sense of well-being.
I already know how to manage my illness, and my symptoms increase and decrease over time, according to the events in my life and how carefully I managed my activities.

Using the forum does have many benefits for me, including social benefits, but these benefits are a stable/consistent part of my life so no changes will be seen in my sense of well-being over a period of 3 months. However, if the internet was withdrawn from me then there may well be a deterioration in my sense of well-being over time.

@Dr Neil Coulson, I should also mention that all of my comments are meant constructively, and I'm grateful for the opportunity to give feedback before the study has started.

 

[Little Bluestem]

For example, if participation reduces perceived loneliness than a standard measure of loneliness would be needed. The challenge is there is so many to choose from, a lot of differing opinions etc. Not going to be an easy task so thank you for all your comments

I think that participation in this forum reduces loneliness, real and perceived. However, I would expected many of us to still rank as fairly lonely. A forum is not the same as in-person friends and a social life. We are less lonely with the forum than we would be without it. Are there any standard measures that will show that? It is indeed not going to be an easy task.

 

[MeSci]

Many good points have been raised above.

I think there's been some discussion about whether it would be helpful to distinguish forum users based on the length of their illness, or the length of their forum membership.

I agree that such distinctions may help to give some meaningful insights, as I think recently diagnosed patients and long-term patients probably use the forum in different ways.

Recently diagnosed patients may be looking for information about their illness, treatments and illness managing techniques.
Such information may lead to short-term changes in health, e.g. if symptom management techniques are implemented.
Whereas long-term patients have most of the information that they require about tynd use the forum for other purposes, such as social support, following the scientific literature and sharing news about research developments etc etc etc.

Also, the social support to be found on the forum might make a big difference to the lives of newcomers to the forum. Whereas, for long-term members, the social support may be an essential source of comfort but is a constant.

As a long-term patient, using the forum will not now lead to any short-term improvements in my illness or sense of well-being.
I already know how to manage my illness, and my symptoms increase and decrease over time, according to the events in my life and how carefully I managed my activities.

I think this is too generalised. I am a long-term sufferer, but only found out about promising lines of self-treatment in the last year or so, because I had been too busy trying to keep the wolf from the door to have time to read and analyse the research properly.

So I had been doing the wrong things for 16-17 years, and some of those for most of my life, and only after coming across info on one or more forums and finding time to read up on it was I able to start improving my health - and I have.

I very much doubt whether I am alone in this.

 

[Hope123]

This is a bit different from what it sounds like you are trying to accomplish but this review of patient-reported outcome measures might be of interest. Basically, many measures used in ME/CFS are not well tested/ validated with the best validated being the SF-36.

http://www.ncbi.nlm.nih.gov/pubmed/21590511

Something which might be interesting to measure is self-efficacy; not familiar with the standardized scales myself but sure there is probably something out there related to health and self-efficacy. Do people tend to try new things or try different treatments for longer duration, etc. with social support online? Are they more likely to feel like they have some control over their health than those without social support (online or off)?

As a researcher, you're probably well aware of faulty inferences from data. Some studies in the past have seem to imply that support groups (in-person) don't help because people aren't getting "better" but I've always thought it was the reverse --e.g. the people who've improved don't need support groups anymore and thus have left; the people who are sick still need them.

If you look up Leonard Jason, a community psychologist, you'll see his papers related to depression and anxiety in CFS. He prefers to use some version of the SCID when diagnosing people; the problem, as others have posted, with some depression/ anxiety standardized scales is they include somatic symptoms (common to CFS and depression) as evidence of depression or allow the researcher to make a decision about whether a symptom is caused by psychological vs. medical causes. That can be very biased as we have studies in the US showing up to 85% of clinicians (doctor, nurses, etc.) a priori believe this to be a psychiatric disorder despite education by various groups that it is a non-psychiatric condition.

 

[MeSci]

I've had a possibly-useful idea that could both help Neil formulate his study questions and encourage people to participate in the research who may lack interest due to the psychosocial focus.

Has there ever been a poll here to ask people what made them start using this site? I think that the best kind would be one where each potential reason has a range of options ranging from 'Not important' to 'Very important' rather than putting reasons in order of importance. I find the latter difficult as several factors are often of equal importance.

So reasons could include 'emotional support', 'scientific research participation', 'scientific information', 'help with benefits/work', etc. Maybe a short thread could precede the poll asking for suggestions for inclusion so as to avoid the risk of leaving out something important.

 

[caledonia]

If you want to show some kind of progress of "getting better" in the proposed 3 month time frame, I think you'll need to catch people right as they come to the forum for the first time. Then follow up with the same people in 3 months.

If people haven't had much support before, they'll get social support, help with applying for disability, info about pacing, treatment info they've never heard of and so on. This has a bigger impact early on.

Once you get past the basics, and you're here long term, you're not going to see as much change. And I've been on forums for so long, I can't really remember why or how I started in the first place. I know why I stay though, and know why I like this particular forum better than others.

Maybe break it into two groups - newbies and long time users. Then you can see how the benefits change over time.

 

[MeSci]

If you want to show some kind of progress of "getting better" in the proposed 3 month time frame, I think you'll need to catch people right as they come to the forum for the first time. Then follow up with the same people in 3 months.

If people haven't had much support before, they'll get social support, help with applying for disability, info about pacing, treatment info they've never heard of and so on. This has a bigger impact early on.

Once you get past the basics, and you're here long term, you're not going to see as much change. And I've been on forums for so long, I can't really remember why or how I started in the first place. I know why I stay though, and know why I like this particular forum better than others.

Maybe break it into two groups - newbies and long time users. Then you can see how the benefits change over time.

Again, I think it will be hard to generalise according to length of time in the forum system. PR is a huge resource - in fact it was this size and complexity that put me off joining at first - I feared that I would never get the hang of using it!

Some people may only dip in to the system occasionally, and may take months or more to happen upon a section that helps them.

 

[Esther12]

Again, I think it will be hard to generalise according to length of time in the forum system. PR is a huge resource - in fact it was this size and complexity that put me off joining at first - I feared that I would never get the hang of using it!

Some people may only dip in to the system occasionally, and may take months or more to happen upon a section that helps them.

I think that a potential 'harm' that could come from PR is that there is a lot of posts from a lot of different people with contradictory views, and often not the best evidence to support the claims being made. A new patient could easily end up wasting a lot of time and effort if they just happened upon some confidently made but false claim from a random poster.

There are quite a lot of critical and sceptical posts too, but the forum is so big that that people can end up find almost any claim.

Overall, I think that this is the best way to have a forum - lots of room for different views, and for people to question one another, discuss the evidence, etc, on the basis of equality and without people being able to claim any particular expertise or authority over matters. It does make it a bit of a mess for new patients posters though.

 

[caledonia]

Again, I think it will be hard to generalise according to length of time in the forum system. PR is a huge resource - in fact it was this size and complexity that put me off joining at first - I feared that I would never get the hang of using it!

Some people may only dip in to the system occasionally, and may take months or more to happen upon a section that helps them.

How about looking only at people who are regular users, not occasional dippers? Or maybe you could compare if regular users get more out it than occasional dippers.

 

[SOC]

As a researcher myself, I'm finding it hard to understand how you will be able to handle the massive number of confounding factors in order to draw any kind of rational cause-effect relationships. Many assumptions will need to be made in order to consider confounding factors negligble. Among the confounding factors I can see right off the bat are: length of illness, length of membership, time between diagnosis and joining PR, heterogeneity of patient group, possibility of people without the illness participating and lack of clear diagnoses in participants, existence or not of comorbid psychological conditions, the multitude of ways to use/approach PR -- for knowledge, for emotional support, and so on.

It appears to me that there is an assumption that PR acts primarily as an emotional support group. While it does indeed act in that capacity, I question whether that is its primary function. Many of us are here for the shared scientific and clinical knowledge of a poorly understood illness, or to remain aware of advocacy issues, and the emotional support is icing on the cake. A look at the vast array of subforums at PR shows where our focus lies, and the majority of the subforums are not about emotional support or even lifestyle management -- they are about treatment and advocacy.

I wonder about the 3 month timeframe as well. Experienced members are not likely to have a change in their emotional well-being or coping skills in that time period. A measure of emotional well-being over a three month time period is likely to be more a measure of the change in the political situation re ME/CFS or the success or failure of recent research than it is any measure of the emotional value of PR itself.

I suggest that a cleaner approach would be to study only new members who stay at least three months. That is the member subgroup likely to show a psychological benefit from finally finding a group of people who understand the illness. Beyond that initial period, I don't think continued membership is going to show significantly changed emotional/psychological well-being in three months. The outcome measures listed related to depression, anxiety, or psychological coping skills aren't likely to show any change over three months in experienced members.

Outcome measures that might demonstrate a change in experienced members over 3-12 months would be things more like: knowledge of illness, knowledge of physical coping strategies (pacing, HR monitoring), accessing appropriate medical care, or awareness of and/or participation in advocacy issues.

 

[Helen]

@SOC
So well formulated. Thanks. I must say I hesitate for any result , as so many "one-liners" from studies can be turned against us as a group, and the fact that ME/CFS is primarily physical.

@Dr Neil Coulson
Sorry to be sceptic about your study, but as we don´t have a full acceptance for our diagnose and disease, our situation is very different to e.g. people with diabetes or cancer. Anything that might be seen as psychosomatic will do harm to people with ME/CFS. Too many doctors are ignorant of all the published studies that show the physical aspects of this disease, so we do all we can to avoid more of any kind of psychosomatic discussions connected to us.

Hope this is possible to understand though English isn´t my mother tongue.

 

[MeSci]

I'd love to multi-like @SOC's message 32!

It's probably been said here before, but a major reason why ME sufferers are so much more active (sic?) in forums is that we get very little help of any kind in the 'real world' unlike people with diabetes, cancer, heart disease and other better-understood and treated illnesses. Before such forums existed we were left horrifically alone to cope with our illness. Ignored, disbelieved, mocked, rejected, left without financial support or practical help, given dangerous advice, etc., etc. Forums like this have been transformative in so many ways.

Back to the research: another confounding factor may be a very high level of self-selection. Those who are unhappy with the focus of the questions will be less willing/likely to participate than those whose main reasons for using the forums match the focus of the questions.

 

[peggy-sue]

I had been hoping you might gain some insight from posts about the true nightmare of trying to deal with authorities and benefits and getting some practical help - the sort of help that would be readily available to somebody equally disabled but with a recognised disease (at least in countries where help is available without paying for it).

There are some heart wrenching tales documented here of folk being grilled while unable to even hold themselves upright, far less listen and comprehend what is going on...and still being denied any help - but having to suffer even more for months after having made the attempt because of the payback.

That is the story we need to be told. The appalling discrimmination we suffer. The hopelessness we feel about the psychologisation and denial of the horror of ME.

 

[aimossy]

I am on the droop now mentally but when its comes to psychology research and in this context of this forum......it all depends on the slant the researcher is taking or looking to show.
this project seems to be aimed to show the benefit of this forum for a group of people that are marginalised in society and with decreased quality of life.....in saying that im not meaning to be negative about myself or anyone else or us as a group.
what sort of questions will be in the survey.....is it a collation of what we report in a way that will not somehow end up being derogatory?
Are they yes or no questions? about what topics?
if you want something to be objective you have to objectively report what people state and be accurate in the reporting.
brains gone now.
maybe I haved missed a post about this side of it already.

 

[Firestormm]

@aimossy Methinks I am 'on the droop' too now . Nothing is making much sense. Back to bed for me

 

[Bob]

There are quite a number of posts in this thread in which we have discussed why we use the forum, how it helps our lives, what life would be like without it, and the difficulties we face in our lives directly through our contact with health services and indirectly through vested interests attempting to label our illness as a self-induced cognitive-behavioural disorder. So, in the study, it would be nice to have space and perhaps specific questions to allow us to air our thoughts (and grievances) in relation to these specific issues. That might be a very nice opportunity for patients to tell their stories.

 

[peggy-sue]

To be honest, I do not want to participate in a study which is primarily based in any psychological stuff.

There are far too many of them already, they're just a waste of resources, time and effort.

How many folk are out there, desperate for URGENT psychological help (for example, with addiction, which should be addressed at the time an addict decides they want help), who are shoved on 18 month waiting lists, by which time the moment and impetus is lost, who are being denied help they need because therapists are being wasted on the business of denying ME?

 

[SOC]

I am on the droop now mentally

Love that phrase! It's a perfect description of the not good, but not dreadful days that make up a significant part of my life now. Serious overdoing will definitely crash me, with all that implies -- pain, exhaustion, flu-like symptoms. But I'm too knowledgeable about the illness now to do that to myself. Minor overdoing, though, is harder to judge in advance so I often put myself "on the droop" trying to extend my boundaries just a little bit more.