https://www.tandfonline.com/doi/full/10.1080/21641846.2024.2303887 ABSTRACT Purpose Myalgic Encephalomyelitis (ME) is a chronic neurological illness 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 conditions, more knowledge of characteristics and experience of online use in everyday life is needed. This scoping review systematically identified, appraised and synthesised what is known on how people with ME/CFS use the internet. Method The following bibliographic databases were searched: Embase, Medline, PsychINFO, Cinahl, AMED, and ASSIA, plus Web of Science, ProQuest Dissertations & Theses Global, Scopus, and Google Scholar for grey literature. Two reviewers independently screened title-abstracts, and full text of studies against inclusion criteria. Remaining studies were quality-assessed using appropriate critical appraisal tools. Results Many people with ME/CFS go online daily to gain information and share experiences of their illness including difficulties with family, friends and doctors. Reciprocity of emotional and social support was found with a sense of in-group belonging and empowerment. Validation was sought online, and identity renegotiation took place. Some replacement of offline social support for online engagement was reported. Online lay expertise was seen to improve offline health professional relations but not replace them. Conclusions The internet is a valued source of support for people with ME/CFS in terms of sharing of experiences, legitimacy, empowerment, and integration into people’s everyday lives. The extent of interrelating of online and offline lives is not clear however and needs further investigation. KEYWORDS: Myalgic encephalomyelitis chronic fatigue syndrome internet use social support online
Given the title of the study is 'how people with ME/CFS use the internet', the conclusion, while sympathetic, seems way too narrow. The internet is not just a source of social support. As @Wonko noted on a related thread, we order food and other things we need. Much like other people use the internet, and particularly like other people with restricted mobility use the internet. Those of us who work probably work online. We do our tax returns, we manage our finances, we research the best options for things we want to buy. We communicate with people about things that have nothing to do with our illness or emotional support. We use it to campaign, to advocate. Young people with ME/CFS use the internet to study online, to keep in touch with their teachers. We watch films and tv shows, we listen to music, we watch sports events, we play online games. We listen to the radio, we get our news about the world. The results section makes it seem that people with ME/CFS are passive and hyper-focused on their illness, complaining about our difficulties and seeking solace from each other. Well yes, that happens. But for most people with ME/CFS, that is only a small part of what they use the internet for. Those Results seem to entirely miss most of the practical and recreational things that we use the internet for. I am really struggling to see the utility of the next phase of this project which is to interview people with ME/CFS about their internet use. I wonder what tangible benefit further investigation would bring. I would so much rather this researcher used their time to analyse e.g. the online information resources about ME/CFS. For example, how accurate are the resources governments provide about ME/CFS?
The next stage of the project is discussed here: Request for Steering Group members to guide a study on online connections of people with ME/CFS and their offline lives
The abstract reads like they are talking about wild ducks or something, creatures without a voice that you can only study from from what other people said about them. I had a question about the claim Apart from the obvious question -is it needed, and does the community think this is neccesary?- I wondered where were these higher levels of online activity reported? When I looked into the paper, it said Reference 13 is a paper by Ytre-Arne on Norwegian bloggers with ME. And that paper says: Knudsen et al (link) is a Norwegian psychology paper from the University of Bergen and King's College psychiatry Dept., its references full of the known psychiatrisation crew, that treats "CFS/ME"as a "functional somatic syndrome" and used harvested data from Norwegian internet fora on "CFS/ME" (2), breast cancer, prostate cancer, chronic pain, back and neck conditions, mental disorders (2), anxiety, depression and dependency, anxiety and depression, drug and alcohol dependency, and obsessive compulsive disorder, to conclude that "CFS/ME online forums had more than ten times the relative activity of any other disorder or condition related forum." Edited to add: The paper thanks Simon Wessely - who has spent decades portraying ME as a mass hysteria, its patients a victim of false illness beliefs influenced by patient orgs and contact with other patients - "for valuable comments in the process of this study." (It also contains this beauty: "Despite the potential benefits of online support, the high level of activity observed in the CFS/ME group may seem contradictory given their core symptoms of fatigue and lack of energy. However, this apparent contradiction may be explained by emerging evidence regarding the pre-morbid personality risk factors for CFS/ME.") Moe (link to abstract) is a computer paper on blogging in Norway. I find none of these compelling references. Unless I have missed something (early morning), Shortland et al itself uses a weak substantiation for that claim, and their source's sources also do not provide a good foundation. All based on a single country, and the only non-blog-based paper is one from the psychosomatic movement that harvested info -without permission- from online fora and compared Norwegian ME patient's internet use (living in a country with a strong psychosomatic presence in protocol and healthcare if I'm not mistaken) with mostly forums of psychiatric issues and one type of non-chronic illness. None of this can be used to properly substantiate Shortland et al's "With reported higher levels of online activity for people with ME/CFS than other conditions..." like it is elaborately compared with other chronic conditions and something that occurs in every ME/CFS population and for all online activity. Edited to add: Shortland et al themselves say Knudsen et al is not of adequate quality (see post #9 below) - yet at first glance, besides some publications on Norwegian blogging, that seems to be the basis of their claim on higher levels of online activity compared to other conditions.
I agree with your whole post, but I'm also finding it problematic that this is "the next phase" at all. When I read your post I thought: why did they not start with interviewing patients and getting a feel for the people and their situation, instead of treating ME patients like mute, alien creatures in a petri dish? And then I saw my response to this study's protocol: I still stand by this. Frankly, due to a combination of the low quality I've seen, the seemingly low awareness of the researchers, and the attitude towards patients, I find this project quite exploitative as it appears the most it will be able to do is provide funding, employment and publication for the authors without any real benefit, respect or meaningful interaction with the people they say they study. (If they had known their stuff, actively interacted with their studied people -about them with them- and had done solid work, it would be a whole other story for me). * Maybe I'm being too harsh, but I'm quite fed up with this type of about-them-without-them half-work. Based on the assumption that it is all well-meant (from the protocol I got the notion they were meaning to be helpful), it can still be wrong. * *Edited it with a strike-through. I still think this study, or these types of study, risk having too little regard for what they are doing, using people's lives and illnesses for publications which do more for the author than the actual people written about, but the reason for a literature-first approach might be PhD requirements, like Hutan pointed out below. I'd still not be happy with that, but that would make my remark not right for this particular study.
Nice analysis @Arvo That Knudsen paper rang bells. We actually have quite an extensive analysis of it here: Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study by Knudsen et al. 2012 Needless to say, we did not find it produced evidence of people with ME/CFS having unusually high use of the internet, or even unusually high use of online forums e.g.
I do think it is well-meant, but they certainly have not looked critically at the papers they cite. I expect they were required to do a literature review first, as is common in a PhD. So, I understand why they did what they did. But maybe it is time that things were done differently, starting with talking with the community to work out what research would be valued.
To be clear, I think the authors are well-meant as well (I edited a bit before your reply, I hope it's clearer now), it's just that that does not necessarily guarantee good research or a good publication, and it's the patients who will be harmed by it. That being said, I just read the introduction and skimmed the rest of the paper. Like with the protocol, though I have some issues, in general I like the research topic of this paper, provided it is done with care and it sticks to the actual whole question or a well-defined specific one on social support. I agree with Hutan's comment in post #2, e.g. it's too much focused on social support and medical information, which is too narrow a scope for the reality of the research question "How do people with ME/CFS use the internet?" I also still think that what they think to achieve might be too "rosey"; despite their broad research question they home in on social support, and about how online and offline interact they say e.g.: To think that a study on internet use will "inform healthcare practice social support initiatives and aim to improve services to those housebound with ME/CFS", given the current situation, is rather..... optimistic. Even if it had the potential to do that, if the social support aspects of ME patient's internet use stem from isolation due to stigmatisation and neglect, then you're informing these "healthcare practise social support initiatives" not based on what ME patients inherently need, but on what they need due to a bad situation - would that be made clear? And would it then not be better to work on the stigmatization and neglect instead of a consequence of it? I think this study direction might use a bit of streamlining/"tightening" on what it wants and how exactly this would benefit patients beyond a rose-tinted glasses view. (Or it needs to communicate it better.) Anyway, I'm sidetracking. That could certainly be it. I wish they'd debated that then. I'm guessing that would be a decades-old traditional requirement, and not always the best place to start when you're studying people, particularly marginalized people, despite authorities asking for it. The researchers are studying a marginalized group that has to deal with harmful prejudice due to active stigmatization by pseudo-scientific ablism, particularly via these types of studies where they are psychologically judged and talked about, usually by healthy outsiders. Not about them without them should be the aim in these sort of studies IMO.
Continuing on this, I saw that Shortland et al actually mentioned Knudsen et al. They say: So it's not good that that same study is found at the basis of what they say about internet use by ME/CFS patients:
As in this further piece from Norway 'giving the patients a voice' discussed here from 2024? Thesis - Hope for recovery after prolonged and unexplained fatigue, 2024, Andersen (Norwegian) | Science for ME Conversely, what perpetuates illness, especially, severe - over focussing on symptoms, unhelpful beliefs etc. not our fault that patients become severe following treatment. All of which may be eventually used retrospectively to shore up this 'next phase', a seemingly implementation step already taken by NHS England during the UK ME/CFS Delivery Plan discussion process (and prior to publication now due for the end of March) further upstream. They need some UK based evidence, and quickly. Just a theory mind you. Medically unexplained symptoms - NHS Updated 5 June 2024 Next review date 5 June 2027
