Request for Steering Group members to guide a study on online connections of people with ME/CFS and their offline lives

I can't reply in more detail right now, but just wanted to say hello and thank you for providing this additional relevant context/information

 

Many thanks for the extra information, Diane. I am actually quite (pleasantly) surprised by this because I review grant proposals on a regular basis and pretty much all of them require a formal account of PPI plans in order to be even considered for funding. I may be old fashioned but I see that as a bureaucratic intrusion that will not make much difference to whether there is genuine engagement with patients of the sort yo u are clearly interested in. It is a box to tick.

As I indicated before, I think you could get a huge amount of information just from raising the questions you might want to ask on a thread here. You are likely to get scores of answers and they will be in a format where people can update their comments based on active discussion.

The two problems I see with a few interviews are that
1. The people interviewed are not going to be a representative sample - you can bet your shirt on that for all sorts of practical reasons.
2. Their answers will be heavily flavoured by trying to 'help' your research. Patients always do this, I can say from a lifetime experience of interacting with patients in research.

The advantage of S4ME is that people tend to be wise to these problems. There is a depth of understanding of research methodology here that you will find in very few academic units.

Research has to provide generalisable statements. An album of holiday snaps may be a good account of a past holiday but it tells us nothing about any other holidays. I am not clear how you can get generalisable information from a few interviews that are not going to go beyond the obvious. Some people spend hours on the net, others don't. Some find it a lifeline. Others use it for specific queries. And some stuff on the net is great and some stuff lousy.

The bottom line would seem to be impact on 'services' and I would be very interested to know what hypotheses one might raise as to what that could be -general or specific. We have e-learning modules from the MHS on ME/CFS; what matters is not so much how many people use the net as whether the modules are any good - and they don't seem that hot. A recommendation to provide more net-based services is only going to be valid if the stuff is any good - and there is a major risk of it being worse than useless.

Just some thoughts.

 

I wonder if there's a useful question about people's access to the internet, and the impact on them of a lack of access?

I don't only mean people who haven't got a device that meets their needs or who can't afford broadband. There are significant numbers who have internet access in theory, but are only able to use it infrequently and / or for short periods due to severe illness.

I've never experienced severe ME/CFS, but I can imagine something of the isolation I might feel if I didn't even have access to an online community who all 'get it'.

If part of a research programmes looked at the challenges severely affected people face and any strategies they think could help them, it could have a practical application as well as an academic one. Even if only for ME/CFS charities and NHS websites!

 

I wonder if you can also take into account that people's skills at using the internet vary considerably which will impact how and what use they make of internet based resources.
Currently cannot process more thoughts but this should be considered from the outset.