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

Project: I am studying for a PhD on the social implications of having a long term chronic illness, namely ME/CFS. As part of my research I am conducting:

A qualitative study on the online connections of people with ME/CFS and the relationships between these online connections and offline lives.

The purpose of this study is to understand the experiences of online usage in adults with ME/CFS and find out how this activity supports them in their everyday life. Gaining knowledge on how individuals use ME/CFS-related online sites for support, and how this fits in with their offline relations, will help us to look at providing better services to support management of the condition.

PPI request: I am looking for 5 people who have ME/CFS and use the internet in an ME/CFS-related way to form a steering group.

Level of engagement: to meet 3 times on zoom for 30-60 minutes in 2025:

1) To advise on interviewing topic guide

2) To discuss emerging findings

3) To discuss results & dissemination avenues.

The meetings will be attended by 6 PPI members and myself. It is possible to do 1:1 sessions if required.

Reimbursement: unfortunately there is no incentive available other than knowing you are leading research into improving the support offered to people with the illness.

Initial meeting: due to time constraints the first steering group meeting ideally needs to take place in January/early February.

Contact myself: DLS760@student.bham.ac.uk

 

Er, what's PPI? A quick search gives 'payment protection insurance' or 'Proton pump inhibitors'!

 

It is good to see people interested in research related to ME/CFS. But my question would be why asking abut internet use would help providing better services? At present we basically have no meaningful services and certainly no evidence-based interventions. Developing better services will require trials of particular modalities. Are there particular modalities that you think we could devise better trials for if we knew more about internet use? My guess is that it is so personal and variable (people here come and go) that no generalised conclusions are likely to emerge.

 

I wonder if this relates to this protocol also from Birmingham (Institute of Applied Health Research) ?

I'm not familiar with the institutions role in any past research into ME. I'd be keen to know how is the research being funded and what it's thrust is? It's not especially helpful to stereotype PwME as hyper online.

 

Welcome to the forum, @PhD Student @Bham

This was similar to my response. It's important, because your ask's quite a big one—they always are in ME/CFS.

It involves people using capacity they need for the basics of life and self-care, which is then not available for those things. It could even mean their symptoms worsen for a time.

People will make sacrifices if there's a good enough reason for the ask, of course. If it's a two-way benefit, where they can enjoy speaking with a researcher still in the early stages of their career and potentially help make the future better for people with ME/CFS.

But it's not like asking for something that only costs volunteers a bit of their time. In those cases people may be able to afford to be generous, or volunteer for things because they sound interesting.

Anyway, look forward to hearing more about your work.

 

Well, if this is Diane, you will find everything you could possibly want to know right here on S4ME I would say. 3000 people to talk to in open discussion, no holds barred. This is where I discovered everything about ME/CFS, as a health professional.


"Diane is studying for a Doctorate in Applied Health Research with the College of Medical and Dental Sciences. Looking at the social implications of long-term chronic illness, her PhD – using qualitative research methods – investigates how people with Malygic Encephalomyelitis/Chronic Fatigue Syndrome build and maintain social and community networks and relationships, both online and offline, in their daily lives. Diane has a personal and professional interest in living with chronic fatigue and its social construction, perception and understanding in society"


My guess is that the reality is that this request for PPI steering group members is a requisite of the college system - likely of the bigger 'system'. It is a hoop to jump through. I am sceptical of such rigmaroles but if a good dialogue ensued maybe people here would be prepared to play the college game as a not too onerous part of the bigger project.

Applied Health Research Units needs to be got up to speed on just how catastrophic the health care system's role has been for ME/CFS. Maybe some good papers could be produced.

 

Welcome @PhD Student @Bham it is fantastic that you are looking to establish patient involvement in your steering group and great that you are discussing this here at such an early stage.

It would be well worth looking at the Decode ME study, especially the relevant threads here, as, though it could not possibly be more different to your study, they have got their patient participation right, developed ME/CFS friendly materials and questionnaires and are looked on very favourably by the patient community.

Even before you get your steering group up and running there is a surprising amount of work done to ensure people with ME can participate effectively and on equal terms, especially if you are to also have input from people with severe ME.

We are a very diverse group but provide a hive mind that can be an unmatched resource into understanding existing ME/CFS research, how effective/relevant materials might be and how best to interact with the patient community.

ME/CFS has not been well served historically by psychosocial research, especially qualitative research, so we collectively are likely to robustly challenge research ideas, but this ultimately would result in a better understanding of our condition and in better research.

Obviously being predominantly patients and carers (though not exclusively) we are focused on how any research might directly benefit our community, but I hope we also recognise that if research helps deepen understanding of our experience that might have beneficial knock on effects even if there are no obvious short term practical outcomes.

For me one possible benefit would be to challenge the specialist ME/CFS clinical services’ and the BPS ideologically oriented researchers’ historical prejudice against such groups as ourselves or indeed any online support groups. Indeed some prominent researchers, particularly advocates of the controversial PACE study and supporters of exercise based interventions as curative treatment say, without evidence, that involvement in patient groups reduces your chances of recovery. But then they are attached, again without evidence, that false cognitions are a significant aspect of our condition.

I wish you well, and though I do not have the energy or cognitive resources to be involved in such as a steering group, I hope you also will want ongoing involvement in the forum so that I can at least participate in discussion at various stages.

 

Why now?

This quote from the Review paper abstract

This is the Norwegian reference for that statement (long block of text broken up for ease of reading)
The Social Media Experiences of Long-term Patients:... 2016

 

I hope that you use it to ask questions about how we use the internet for practical support. On this forum there are threads on ready meals, wheelchairs, pillows etc etc

 

@PhD Student @Bham

I appreciate that you show an interest in ME/CFS.

Please read this as context, and please don’t make any of the same mistakes.

https://melivet.com/2023/08/10/poor-quality-of-me-research/

Also, just because your professor says that something is «good enough», that doesn’t mean that it actually is «good enough». This forum is going to hold you to the highest of standards - far higher than most academics. Because our lives depend on it. It can make you a better researcher if you allow it to.

You should probably read this as well while you’re at it!

https://www.s4me.info/threads/long-...e-in-online-epistemic-communities-2025.42161/

 

Having looked at our other threads on this project it is further on than I had first realised, and wonder if discussion with such as ourselves could perhaps profitably have been started sooner at the literature review stage.

I still think it is great that there is the intention to include patient participation in the project steering group, but I suspect a more general discussion of the project here, either in a public thread or in a members only thread, would help to more effectively plan for specific involvement of people with ME/CFS in the steering group, and also be used to inform subsequent planning by the steering group.

 

@PhD Student @Bham

You need to assess what percentage of people with ME live alone. A great many did not live alone before they became sick. Relationships do not always survive one partner becoming sick long term.

Edit Add: Youngsters with ME (from as children or teen) who are too sick to school or socialise in person offline, can be able to school online, and via diverse online groups to develop meaningful social friendships that would not be possible offline.


Also investigate the loss of friendships/family relationships after becoming sick, which is not exclusive to ME, occurs with all severe chronic illness, but which is exacerbated for ME sufferers when their friends/relations have acquired distorted beliefs about the illness being in some part or wholly 'psychological', fully or partly psychosomatic, leading to erroneous beliefs that improvement or recovery is within the power of individual patients and if they don't improve/recover then it's their own fault.

Gaslighting by formerly trusted friends/relations. Patient blaming. Subsequent social abandoning of the sick former friend/relation.

For some pwME who live alone, moderately or severely sick, online communications are the *only* communications with any other human being at all, for days/weeks/months on end. Assuming they are even well enough physically and cognitively to navigate being online. For the first decade of ME I wasn't.

These days, the only person I see in person for weeks on end is my homecarer. In the first year of ME I went for many weeks without seeing a single other human being. It would be another 9 years before I was cognitively/spacially able to go online.

We don't just go online only to discuss illness, research, etc -

.

 

Really, really important message. For 99 % of people in my life, I only exist through my phone. I have not physically met anyone since July except for my parents, sisters and medical staff.

 

It's not even doctoral candidates who need to start by consulting with patient communities. It's their supervisors.

Otherwise, by the time researchers get face to face with patients, they can find they're surprisingly reluctant to answer their questions. From the patients' point of view, they look like the wrong ones.

I'm not suggesting that's specifically the case here, @PhD Student @Bham, just that it's part of a widespread pattern.

At work I used to get questions from Masters students that were based on how their tutors imagined my industry worked. They had no idea, so the students were often left feeling let down. They quickly grasped there was a yawning gap between theory and practice, and that extra work added a lot of pressure. It went on for 20-odd years; we'd have been happy to work with the tutors, but we never heard from them.

 

See also this discussion at the end of last year. Thesis - Hope for recovery after prolonged and unexplained fatigue, 2024, Andersen (Norwegian) | Science for ME for interview based research.

ETA:
Think UK, ME/CFS Final Delivery Plan due to be published at the end of the March, because this request is redicilously short notice for Jan/Feb participation.