Protocol for a scoping review of how people with ME/CFS use the internet (2024) Shortland et al.

Abstract

Introduction: Myalgic encephalomyelitis (ME) is a chronic neurological illness affecting many bodily systems, commonly the nervous and immune systems. Also known as chronic fatigue syndrome (CFS), key symptoms are extreme fatigue, post-exertional malaise, cognitive problems and sleep disturbance. With reported higher levels of online activity for people with ME/CFS than other patient groups (Westerby 2013 cited in Ytre-Arne) it is crucial to gain more knowledge of usage characteristics and experience of online use, and its integration into everyday life. This scoping review protocol details the proposed methods for gaining insight into this little known phenomenon.

Methods and analysis: This review uses the methodological framework for conducting a scoping review by Arksey and O'Malley, with further guidance by Levac et al, and the Joanna Briggs Institute. It also refers to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols reporting guidelines. The following bibliographic databases will be searched: Embase, Medline, PsychINFO, Cinahl, AMED, and ASSIA, plus Web of Science, ProQuest Dissertations and Theses Global, Scopus, and Google Scholar for grey literature. Reference lists of included papers will be studied. Two reviewers will independently screen title abstracts, and then full text of studies against inclusion criteria. Remaining studies will be quality assessed using appropriate critical appraisal tools. Findings will be charted and mapped to gain in-depth knowledge of the use of the internet in people with ME/CFS.

Ethics and dissemination: The findings from this review will be disseminated through peer-reviewed publication and a report for leading charities of ME/CFS. The review will collect secondary data only and therefore does not need ethical approval.

Keywords: Chronic Disease; Fatigue; GENERAL MEDICINE (see Internal Medicine); Protocols & guidelines; Social Interaction.

full text here

My own comment: sigh.
All authors are from Birmingham, UK

 

"With reported higher levels of online activity for people with ME/CFS than other patient groups (Westerby 2013 cited in Ytre-Arne) it is crucial to gain more knowledge of usage characteristics and experience of online use, and its integration into everyday life. This scoping review protocol details the proposed methods for gaining insight into this little known phenomenon."

How, I wonder, does a review of existing knowledge lead to gaining "more knowledge of usage characteristics and experience of online use, and its integration into everyday life."? And I'm sure that the "leading charities of ME/CFS" can't wait to receive the promised report - I'm betting that it will be severely lacking on actual content.

Bio for corresponding author,
"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"

https://www.birmingham.ac.uk/staff/profiles/applied-health/shortland-diane.aspx

 

Following the new NICE guidelines and following the James Lind Alliance project trying to establish research priorities for ME, I wonder what part of the priorities did the authors felt they felt so compelled to research.

From my point of view the authors may read too much of the bad science and have it in their minds that what we are consuming online contributes to our chronic illness.

I would love it if any of the authors could come here and have a discussion with real people with lived experience.

 

No, I really don't think so. It's not even useful, let alone crucial. This is vanity research, it only serves the researchers' careers and does nothing to help people or gain insight or knowledge. For too many of us, there is no "everyday life", and this is in part because of pointless vanity pseudoresearch like this trying too hard to make it something it isn't, while ignoring what it is. As close to reality as what aristocrats knew of peasants' lives in old feudal systems.

What is it that they think can be gained from yet another such study? We're ill, isolated and gaslighted, the Internet is the only form of communication most of us have with the outside world and to each other. There's no need to go beyond that, but of course there is a desperate need to frame it differently, since, you know, we're "ill", not really ill.

 

What is concerning to me is that they won’t stop at a literature, review. They will then move on to social media and explore activism and perhaps surmise that it hurts patients because it prevents them to ‘get on with the program’ (CBT and GET) and get better. The ‘phenomena’ is so very likely to be explored with implied bias.

 

'lets do a review of how coeliacs use gluten free foods, so we can present gluten free foods as being a major part of what causes coeliac disease. We already know that they consume a lot more GF foods than people with other disorders (such as peanut allergy)'.

 

I have no reason to believe we do not have increased internet usage. This is only a surprise if you dismiss our level of disability. In about 2009 I was a participant in a study on how using Second Life affects people with ME, and this was an Australian and Canadian collaboration, though I do not recall what year it was published. Some years later I was in a study on how ME affects academic studies. I had a code name and everything. Such studies can have some small value, but typically are ignored if they have anything useful to contribute. Biomedical research is what will bring major change.

As for everyday life, the potential trap is thinking our lives are similar to the general population. My personal experience is I have to adapt to every change, and it can take years to figure out how to adapt usefully. I never catch up, but things can definitely be improved by adapting to some extent. I also have to adapt to every fad in medicine, particularly those involving psychogenic hypotheses or beliefs or guidelines. I struggle with medical ineptitude every year, as so probably nearly all of us do. This is not about medical incompetence for the most part, its about systemic ignorance of the issues, leading to suboptimal advice even for well informed doctors. Currently I am struggling with my state government who think I can jump through hoops like most people.

Biomarkers, treatments, cures, should be the research priorities.

 

At least 99 percent of my food comes from the Internet, as I cannot just jog down the shops even to the 2 local corner shops are up effectively unclimbable hills.

All of my bills are paid using the Internet, including my cable/Internet bill. Of course paying that wouldn't matter if I didn't have the Internet. As my electricity and gas would be cut off.

Everything I buy comes from the Internet.

So I'd imagine my Internet use may be higher than most, especially as I'm too ill to work, so that's another 10 hours or so, per day, than most people.

The Internet isn't why I am ill, the Internet is what keeps me alive.

I clearly remember, sort of, time before the Internet, and the online grocery shopping it enabled. If I was too I'll to go out I couldn't get food, I nearly starved at one point, i went from 13 stone down to 7 stone.

 

Skimming through the first part of the protocol, it looks like they did not manage to explain their intentions well in their abstract introduction. It now reads like a completely useless vanity study, like you can exchange "internet use" for pyjamas and say that because ME patients wear them more often than other chronically ill people "it is crucial to gain more knowledge of usage characteristics and experience of pyjama wearing, and its integration into everyday life".

However, from what I've seen skimming, it looks like they want to address the care and social situation of ME patients and how the internet is used to gain information and support in the absence of support via other channels. I think "crucial" is a hyperbole and I'd prefer it if they just interviewed patients directly to enhance their knowledge instead of indirect deducing from other papers or possible online harvesting, but I think milder of this after reading some of the full text and I get the impression the team genuinly wants to help.

 

It would be crucial if it examined how to provide support to people with ME who have irregular or even no access to the internet. Or how to provide adaptations to enable severely affected people use it more easily.

But studies that result in nothing actionable aren't crucial, and probably aren't going to achieve anything for patients.

 

Here is an interesting point regarding recent discussions.

OK so apparently you don't need to get it 'signed off' if you are using secondary data because you don't need permission to access something by virtue of 'someone else has already gone and got it'

but I do think that there needs to be a discussion whether this means it is 'ethical' - because:
1. 'things change' or information comes to light (and things have changed significantly regarding ME/CFS in that the new guideline has shown up it has been 'others' with the false beliefs whilst that accusation has been weaponised against us instead throughout old research) that should make you look at that material and the 'ethicalness' of its collection differently

I absolutely think there is a reasonable expectation that where 'accuracy' has been likely to have been discovered to have been distorted by these false beliefs and now disproven ideologies then the 'ethical stamp' shouldn't be taken as read going forwards.

I also wonder whether the false accusation/weaponisation of 'lack of insight' (which it turned out was the researchers' instead of the pwme) was used falsely as justification for such violations. There only needs to be a one-liner claiming 'mass hysteria' or a variation on it (or a reference to the eponymous crud about 'pwme who attend support groups') to show that access was signed off under potentially false pretences. ME/CFS was never caused or propagated by anything to do with online behaviour. It turns out. So justifying that privacy intrusion supposedly on that basis in the past needs to be remedied by said data being barred from being used?

2. there is something about the 'cumulation' of being targeted by research which hits a critical mass for a community. Particularly when using the flawed 'norms' of the literature search, when - due to old guidelines - most of that old stuff is based on wrong-thinking, but isn't being cleared out.

It's one thing someone having got permission 10yrs ago for one lot of primary data collection, it becomes quite another when we don't have a system that is looking at the context of whether effectively you have too many predating all the spaces of a minority.

That then becomes like someone's boss 'happenning to turn up to' a local nightclub when their staff are on a night out (and yes, I supposed they can move venues) vs said boss going around to all the nightclubs on most nights of the week - and what that would do regarding the employees feeling 'observed' and like their access to being able to enjoy themselves anywhere being limited by that. It could be something more functional of course, like the whatever clinic where people might expect privacy. It basically can be used as a tactic to make pwme not have access to anything 'norms' would have access to. Because noone wants to have their privacy infringed.

3. relates to the above point, that are we getting to a critical mass point regarding 'illness focused' groups, whilst also ignoring that people are whole persons as much as anyone else is so basically distorting these individuals completely? Yes I think so. And it's an approach that frankly is just weird and has no methodological appropriateness at all.

 

To emphasise the point more:

Would for example old data on ulcers, or MS after it was proven to be not psychosomatic still be ethically appropriate to be re-used when it was collected under the regime of and beliefs of that paradigm?

and be OK to not require ethical approval merely because it was secondary (someone else did it), with no questions about how it was being used or if that was appropriate these days given new knowledge and the circumstances of its collection and inferences?

If some of the famous psychology experiments that are now seen as ethically dodgy had data that had, at the time, been 'signed off' - would it still 'not need ethical approval' to re-use that data simply because it was now 'secondary' even though the retrospective circumstances mightn't pass ethical approval today?

 

Justified by some dodgy reference referred to in another reference - that they didn't even critique either the veracity and methodology of nor explain the precise context. 'higher online use' based on what? and compared to which 'other patient groups'. It isn't like this figure has come from an official google report, or from I guess them making sure they took a representative sample of individuals and they all agreed to have their internet use monitored.

I don't know who these other groups are, but in comparison to similar age-matched groups then I think it is made-up. In 2013 there was no way I, nor anyone else with ME/CFS could have kept up with the average health person on twitter and fb and so on. And as for colleagues interestingly at almost exactly that same timestamp I happen to have 6 colleagues all of us doing basically the same job on the same level and a discussion in the office made it clear 50% of us (not split by health) used online groceries and the other 50% were wedded to Aldi/Lidl

As far as I'm concerned you'd effectively be manufacturing that 'data' for said 'claimed outcome' in said reference. Particularly easy to do by only looking where you want to look, but also by trends that are very age-specific and situation-specific that every normal person can see and put their finger on around them if they open their eyes. You get a bunch of youngsters as 'the ME lot' and compare their internet use to a bunch of middle-aged 'other patients' and hey presto. And so on.

Most of the people even now in eg local support groups don't do online at all, certainly not social media and certainly even stronger by older age (and that's not because they did it 10yrs ago and stopped but because they never got into it). Same for pwme I know from outside said groups.