Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study by Knudsen et al. 2012

Abstract
Objectives
To examine the level of activity in online discussion forums for chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) compared to other disorders. We hypothesized the level of activity to be higher in CFS/ME online discussion forums.

Design
Observational study

Setting
Norway, which has more than 80% household coverage in internet access, September 2009

Participants
Twelve Norwegian disorder-related online discussion forums

Main outcome measures
Number of registered users and number of posted messages on each discussion forum

Results
Two forums were targeted towards individuals with CFS/ME. These forums had the highest number of registered users per estimated 1,000 cases in the population (50.5 per 1,000 and 29.7 per 1,000), followed by a site for drug dependency (5.4 per 1,000). Counting the number of posted messages per 1,000 cases gave similar indications of high online activity in the CFS/ME discussion forums.

Conclusions
CFS/ME online forums had more than ten times the relative activity of any other disorder or condition related forum. This high level of activity may have multiple explanations. Individuals suffering from a stigmatized condition of unknown aetiology may use the internet to look for explanations of symptoms or to seek out alternative treatments. Internet forum activity may also be reinforced by the creation of in-group identity and pre-morbid personality traits. More knowledge on the type and quality of information provided in online forums is urgently needed.

 

Saw this study because it was tweeted by Kristian Gundersen:

 

They looked at the number of members and post of online forums for different patient groups in Norway in 2009, then corrected those figures for the prevalence of each condition. Both the number of users and posts was much (more than 20 times) higher for ME/CFS than for other patient groups. This table summaries the main findings.


At the end the authors offer two possible explanations for their findings. On the one hand, they write: "The ease of access and anonymous nature of the internet might be particularly appealing for those feeling stigmatized and suffering restricted mobility.19 Internet forums may also be helpful when CFS/ME sufferers report feelings of frustration and dissatisfaction with the treatment offered by the medical profession."

On the other hand they note: "While it is likely that the support provided within online groups may have some benefits, there is a also a risk that strong in-group identity within discussion forums may lead users away from ‘real life’ social support, therapeutic engagement and effective, evidence-based interventions."

I suspect the latter is the reason why Gunderson shared the paper. I personally think there many more plausible explanations for the increased participation of ME/CFS patients in online fora such as stigma in the outside world, medical uncertainty, restricted mobility, lack of other options for things to do (participating on internet fora or social media is often one the last things severe ME patient can still do).

 

The authors seem to have poor knowledge of ME/CFS. Looking at the abstract, they fail to propose the obvious explanation: patients have exertion intolerance and orthostatic intolerance and so they don't leave home much. The internet is a way to connect to the outside world.

The other explanation is that the healthcare system and society is failing ME/CFS patients more than other patient groups, and so ME/CFS patients react by creating their own support systems.

 

It seems to me that part of the explanation for the authors' conclusion lies in the acknowledgements: "We wish to thank Professor Simon Wessely, Professor Ingvard Wilhelmsen and members of Network for Psychiatric Epidemiology (NEPE) for valuable comments in the process of this study."

The authors say that "During the selected week of online monitoring there were no major health stories in the media which could have lead to an increase in internet activities", but that doesn't exclude news around a disease (or a related topic) that is not considered as "major" and that forum users might talk about at length (e.g. a research article). For each patient forum, they should have checked whether the most active discussions were about disease-related news, but they don't state whether they did so. I suppose not. That being said, I would still expect most discussions to revolve around around support, symptoms and treatments.

A slightly more technical issue: "For the majority of the forums, the total number of posted messages at a certain time could be read from a counter on each forum’s main website." If the researchers didn't create an account on each forum, the post counter on the main page might not have included posts in sections that aren't visible to guests -- so they could have missed some.

 

It was also just mentioned in this new article promoting Wyller :

 

Predictable. Well / healthy people viewing a group from their POV and forming opinions on what they think is going on.

Hello, I'm here firstly, because I can't be out and about. Also, I am no longer alone with this illness feeling isolated. And this is a place for advocacy to stop to ridiculous nonsense and inhumane treatment of people for the benefit of eminent careers and to press for science.

ME/cfs has TEN times more gaslighting TEN times more careless, lazy, stupid poor quality non-science disguised as research and way more than TEN times less proper funding for disease burden. So if you're looking for over the top magnitude of disproportions of a thing you can start there.

This spot left deliberately blank . . .
(where expletives would be for the idiocy of the BPS cabal belief system).

ETA: the BPS cabal have never understood power imbalance.

 

There have been some studies which show boom and bust isn't a good way to describe the activity patterns of people with ME/CFS as the variations were no different to the controls.

 

Yes good point. I guess more accurately they presently are not understanding the fallout and their being held accountable for having run everything their way all to their advantage with only their narrative of decades being what people know.

Yet it may be that they understand this too and are stuck fighting because no loss to them is acceptable.

 

Bolding mine.

Well, I was always told I didn't seem the type to suffer fools gladly nor blindly believe what I was told without checking it out for myself & I'm happy to find myself among others with similar pre morbid personality traits.

Welcome...we like rigorous scientific research, we like to discuss and analyse it. We don't tolerate gaslighting of members, personal smears nor attacks when discussing the science. Can you handle it?

 

pre-morbid personality traits.

They want to define a pathological personality trait as one that does not meekly and blindly submit to their 'authority'.

 

I don't know much about the other disorders that were used for comparison, but I expect that most of them have actual medical services available: tests and treatments. We have nothing but the forums. If a new discovery about ME comes out, these forums are the easiest place to find out about them.

 

It's "interesting" (not!) that they did not compare ME/cfs to more illnesses that are poorly understood and difficult to treat.

Why did they not compare ME/CFS to migraine, endometriosis, chronic Lyme disease, POTS/dysautonomia? These are just a few of the illnesses that I see discussed on twitter by A LOT of folks. And I know there are several POTS/dysautonomia forums.

So, aren't they comparing apples to oranges?

 

Very good point.

 

The most likely reason is that patients have a great deal of unmet human needs and this is the only available outlet for seeking help for those needs.

 

I don't follow this crap carefully so I may be off message here.

This bit jumped out at me "may lead users away from ‘real life’ social support, therapeutic engagement and effective, evidence-based interventions". Basically I read this as we've cornered the market in Shamanism come over to us and do not be distracted by thoughts that your illness is biomedical --- it's all in your mind and thinking it's biomedical in fact undermines the "interventions" which will work i.e. ours.
Well if they're doing such a great job then how come the people they treat are not "post intervention" resuming their normal healthy lives? Oh I suppose they'd point to Paul Garner and his miracle cure from Long covid.

Science is supposed to work along the lines measure pre-intervention baseline measure post-intervention baseline - did the intervention work? It's designed to get around the fact that we delude ourselves. So these guys need to objectively measure the effect of their intervention - it's not rocket science e.g. they could use activity monitors.

As I see it the problem with the internet is folks who have some knowledge/education who are really quite dangerous since you need to do some work to see how they're cheating - most people don't do the work since they're not impacted.

They really are frustrating.

 

‘real life’ social support, therapeutic engagement . i have not seen any evidence of society at least in the uk willing to provide any meaningful support or medical engagement with people who have a m e c f s diagnosis . why is it that academics think these things exist it is like all those papers that compare things with the usual treatment as in abandonment by the medical profession . i have had to fight again and again just to keep my basic benefit of course the very nature of the benefits system has made my health and a great many other peoples health much worse ironically leading to claims for other health related benefits.