ME/CFS Support Group online forums

[Hutan]

A survey from a patient support charity about whether they should support the promotion of brain retraining therapies in their patient forum and the responses we had to it got me thinking about the phenomenon of the ME/CFS Support Group online forum. It seems as though every self-respecting support group feels it has to offer an online forum now. I'm not sure that it's a good thing. It takes a lot of resources to run a safe forum.

First you need the Support Group management to be sensible and make good rules for the online forum. Then, it takes manpower, actually quite a lot of it, to monitor the forum and apply and interpret the rules. You need people to be moderators, and they need to be sensible too. In a situation as contested and uncertain as ME/CFS, all of those things are pretty major asks. Most of the time the online forums will be poorly monitored and/or manned with volunteers who come with their own ideas of what good therapies are. Given they are volunteers, it is a bit harder to control them than if they were paid staff. And given the forums are online, it is a lot harder to ensure that everyone is who they say they are.

I think many ME/CFS Support Groups probably underestimate the effort required to run a good online forum and the risks to their members and to the reputation of the Support Group if they get things wrong.

An online ME/CFS forum is really vulnerable to people promoting treatments. Members who have been here a while will have seen the difficult times we have had working out how to strike the right balance of openness to new ideas and to ensuring member safety - and we have a good alignment of our committee, the rules, the moderators, and, to a large extent, our members to help us step through the minefield. If I was a profiteer offering an ME/CFS therapy or wanted to promote the BPS paradigm and the concept of FND, it would probably be a smart move to encourage under-resourced online ME/CFS forums, and then fill them up with recovery stories.

'Promoting' covers a lot of things, not just overt advertising, or allowing proponents to formally present their treatment offering. Do you ban people reporting that they have found an unevidenced treatment helpful? Or do you try to ensure there is good information about risks and likely benefits and the backgrounds of the people involved, and leave people to make their own decisions - while knowing that desperate people may well try anything that someone says might help, no matter how implausible? Factors such as the risk and the cost of the treatment are considerations.

I hope eventually, our forum might be able to offer fact sheets on some of the commonly promoted therapies, and a fact sheet on how to evaluate any therapy before deciding to try it. That way, when someone in a support organisation's Facebook forum posts how great e.g. homeopathy or the Lightning Process is, the moderators could link to something that helps people decide if it is something they want to try.

 

[Dolphin]

On a forum I'm on, someone recently mentioned they felt improvements with the Lightning Process.

Aside: I believe testimonials for the LP are one of the least reliable given you are trained to say you are doing well and not mention impairments or symptoms.

Anyway one person respond by simply posting a link to the MEpedia entry on it.
It seemed to be a useful way to respond that involved little energy or drama.

 

[Ravn]

This question goes right to the heart of what a patient support organisation should be

Fact: patients will seek out places where they can talk about their own and other patients’ treatment experiments and they will want to try things based on that

So is it better for a patient support organisation to provide a platform and have at least some level of influence on the information patients encounter? That would require a huge amount of resources as Hutan outlines, and it would come with the risk of the org being seen to be supporting treatments for which there’s no evidence, even if they put out statements to the contrary

Or is it better to stay well clear and instead be there as a reliably evidence-based source of information if or when a patient is ready to receive it, after the reality check of a few rounds of dashed hopes?

I’m inclined towards the latter because I suspect a well-moderated platform would drive most people in their search-for-anything-to-do-and-try phase away anyway as at that stage they’d be feeling the moderators are too negative

How do patient organisations for other illnesses handle this tension? Even the most uncontroversial diseases like cancer are full of ‘treatments’ ranging from useless to harmful. And the patients there are just as desperate as we are, at least if their mainstream treatments have failed. Do their organisations provide platforms to discuss these 'treatments'? Beyond a patient reporting something they tried in their FB group and the moderator replying with some diplomatic version of 'no evidence, beware of risks'

 

[Hutan]

Such good points @Ravn.

I’m inclined towards the latter because I suspect a well-moderated platform would drive most people in their search-for-anything-to-do-and-try phase away anyway as at that stage they’d be feeling the moderators are too negative

We see ME/CFS patient support organisations making statements about treatments like 'what works for one person may not work for another' - and I think a part of the reason for that is that they want to maximise membership. Even if you think the Lightning Process is pernicious rubbish or homeopathy is utter nonsense, the support organisation might not say that, because they don't want to alienate the people who might leave a great bequest to the organisation in their will.

That's even truer for things like CoQ10, where, despite there being no evidence supporting its use for ME/CFS, clinicians promote it and lots of people with ME/CFS use it. So, a big chunk of an organisation's members will think it's useful. Even the ones who have tried it and decided it didn't help them may be very loyal to the clinicians. Again, the support organisation isn't going to want to annoy those members and undermine the clinicians that they rely on to help promote their organisation and the cause of ME/CFS by telling people that there's no evidence that CoQ10 is helpful.

How do patient organisations for other illnesses handle this tension? Even the most uncontroversial diseases like cancer are full of ‘treatments’ ranging from useless to harmful. And the patients there are just as desperate as we are, at least if their mainstream treatments have failed. Do their organisations provide platforms to discuss these 'treatments'? Beyond a patient reporting something they tried in their FB group and the moderator replying with some diplomatic version of 'no evidence, beware of risks'

I really like this question. I've looked at a few national Multiple Sclerosis and cancer Patient support organisations and I don't think they have online forums. They generally provide well curated resources. Sometime they will offer online sessions facilitated by a nurse. The more local organisations tend to have face to face groups, and nurse home visits, but they don't seem to have online forums. Of course, the situation with ME/CFS is a bit different, and 24/7 online support for us can be a source of great comfort and a lifeline.

But, I think the comparison does indicate that a patient charity, and certainly a national patient charity, does not need to offer an online forum to be credible. In fact, probably the opposite. I suspect it is better to maintain a sort of dignity above the discussions of whether the coffee enema or LDN have helped; to keep well clear of the possibility of being hijacked by profiteers.


I'd be really interested to hear from staff of the organisations who run online forums (I think Emerge, UK MEA, AfME and the Norway MEA all have them?). And from people who have had a go participating in those forums. Do you think the effort involved in setting a forum up and running it is worthwhile? Do you think it helps the organisation meet its aims? If yes, what do you think is making it work well?

 

[Trish]

I tried the UK Action for ME forum briefly a few years ago. It seemed to be moderated by one individual who only allowed a single thread for sharing research news. The thread was pretty inactve. There seemed to be only about a dozen active members who chatted about their lives and experiments with treatments, at the time I think it was something herbal. It was more like a low key small virtual social club.

Of course many groups have a Facebook presence which acts as a sort of forum for discussion, but by the nature of FB discussions are ephemeral, and I find pretty unsatisfactory. They need to be moderated. I followed the MEA one for a while but rarely look at it now. I tried joining a couple of MEAction closed FB groups but again the rapid disappearance of discussions and lack of structure of FB defeated me.

 

[Trish]

Stated ethos, rules and moderators are absolutely key, I think, to how a forum operates and evolves. It has been a fascinating and at times very time consuming and occasionally stressful experience being a mod on this forum.

I think our success so far has been to a very great extent due to Hutan's work behind the scenes as lead moderator. Most members are probably barely aware of the amount and quality of work that happens behind the scenes to keep a forum sticking to its defined purpose without being derailed by those with other purposes.

Even with paid staff to act as moderators, if a patient organisation is going to run a forum of any great value to its members, it will need to work hard to ensure it doesn't get hijacked by promoters of bad advice and worse. And it's hard to know how much real demand there is for such forums, or whether they will end up as either a small social club for a few people or a place to share experimentation and promote quackery.

As we have found, there seems to be only a tiny minority of pwME, clinicians and researchers who want to join open discussion and critique of research.