Using Data Mining and Time Series to Investigate ME and CFS Naming Preferences 2023 Bhatia and Jason

Abstract

There have been numerous iterations of naming convention specified for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). As health care turns to “big data” analytics to gain insights, the Google Trends database was mined to ascertain worldwide trends of public interest in several ME- and CFS-related search categories between 2004 and 2019. Time series analysis revealed that though “Chronic Fatigue Syndrome” remains the predominant search category in the ME and CFS field, the interest index declined at a rate of 2.77 per month during the 15-year study period. In the same time period, the interest index in “ME/CFS Hybrid” terms increased at a rate of 3.20 per month. Potential causal mechanisms for these trends and implications for patient sentiment analysis are discussed.

Paywall, https://journals.sagepub.com/doi/abs/10.1177/10442073231154027

 

Facebook post from ME Research UK about this paper, my bolding.

"ME and CFS are recorded separately by the World Health Organisation, with both being classified as diseases of the nervous system. Each has their own separate history. The USA now has a specific category for ME/CFS in the International Classification of Diseases, and the idea of Systematic Exertional Intolerance Disease (SEID) was floated in 2015 but within ME, ME/CFS, CFS/ME, CFS, and SEID what do people actually search for online?

Prof Lenny Jason has co-authored a study https://bit.ly/3Yj4G5i paywall) shows that 'Chronic Fatigue Syndrome' remained the most searched for term between 2004 and 2019 but was declining. ME/CFS and CFS/ME searches are rising at a greater rate than CFS is falling and SEID has failed to find any traction. ME as a term fluctuated the most.

The authors suggest "We believe that increased usage of the name ME/CFS represents a shift toward the nontrivialization of ME and CFS" whilst also reporting views that ME should be reserved as a term for those "with more severe disability and symptoms". Thereafter patients who meet the 2015 Institute of Medicine clinical criteria could be classified as ME/CFS patients and those who fail to meet either critria deliniated as having CFS."

https://www.facebook.com/MEResearch...CdNaHgdzhk33MUPVXeiWrqCCyvJ9pe4Bt14pvkbxw6FLl

 

I expect that many people who are chronically tired will search for "chronic fatigue", and are likely to come across comments about "ME/CFS is not chronic fatigue" and therefore start searching for "ME/CFS".

While this isn't totally useless information (it can help educate people and direct resources), I do hope that it doesn't lead to more wastage along the lines of "Let's solve ME by renaming it!"

 

That's a terrible idea. ME, CFS, and all the other names refer to the same disease and everyone with ME experiences severe disability. Nobody will take ME/CFS seriously unless we call it ME, ME/CFS, or something else serious. That's why I exclusively refer to my illness as ME, lack of encephalitis or myalgia be damned. CFS needs to die.

 

As far as I can see, it's a nonsense proposal which would create more confusion and stigma while solving nothing.

 

Looking at how often terms were searched for is nonsense for starters because a search for ME is not very helpful. I just did and on the first page of results I get a merry mix of the Merriam-Webster and Cambridge dictionaries, a few Montenegro sites, a Queensland bank, a T-shirt shop and yes, further down, also a couple of actual ME sites mixed in.

Most people quickly learn to use CFS or ME/CFS as search terms instead, thereby artificially inflating the apparent popularity of the terms, even if outside their Internet searches the same people always use ME. I do.

As for revisiting, again again, the debate about ME and CFS being different beasts...

Maybe some day in the future, when we have biomarkers to conclusively separate out different diseases from within the ME/CFS umbrella - if indeed there are different diseases (I suspect there are but it's too early to be dogmatic about it) - then we can look at this again. But right now there's nothing to gain except all manner of confusion.

Agree. CFS as a stand-alone term must die, and the sooner the better.

 

Both ME and CFS have baggage attached to them that continues to cause confusion. Going with the name Systemic Exertion Intolerance Disease would have been good.

I like the idea of a name that revolves around disrupted recovery from activity.

It highlights the postexertional phase.
Most people should intuitively understand that repeated exertion can only be tolerated in proportion to one's ability to recover.
It explains why we need rest after activities.

 

Yes, SEID is definitely better than either.

But Ramsey’s disease for me. Or Royal Free disease, as it’s my local trust and they’d pretty much have to set themselves up as a centre of excellence out of institutional pride.

 

I would support any name that portrays it as serious and gains popular support. ME, SEID, Ramsay's Disease, whatever.

I propose PEM syndrome because it makes no claims about the etiology and highlights its hallmark symptom, which is badly neglected.

 

That’s sensible, although one drawback would be that on entering mainstream discourse PEM, like brain fog and indeed fatigue, may be used carelessly by healthies to describe occasional annoyances.

I’ve been wondering how any name change would gain effect, and on the offchance that anyone else cares, have started a thread here.

 

That would probably get few searches, because unless you already know that feeling worse the day after exertion is an actual syndrome, why would you search for "PEM"? Feeling constantly tired would likely lead to searching for "chronic fatigue", and if you could convince the search engines to top the list with an explanation of the differences between CFS, ME/CFS, and various other terms and similar syndromes, people could find the right path to useful information easily.

 

That would understate the fact that there is no need for exertion to feel ill and awful all the time. Lots of people struggle precisely with the "but I didn't even do anything! why am I crashing?!"

Not that things are any better right now, but there is a lot of misunderstanding that leads to people assuming we are otherwise fine unless we overexert. Even if the line were drawn at any exertion, many of us feel sick and awful all the damn time.

In fact I find the emphasis on PEM problematic for the same reason. At least PESE implies a baseline presence, as you can't exacerbate something unless it is already there.

Classification for this is hugely problematic given that it changes over time. What does someone have when they have ME, then are crummy for months without PEM, then relapse? Did they have ME the whole time? We continue being sunk by old mistakes. The entire terminology has to be reworked from scratch, it's awful and massively counterproductive.

 

Also, some of us have symptoms that aren't worsened by exertion, yet we still feel lousy all the time. I've been shovelling snow for several hours a day the last few days, and that doesn't affect my ME symptoms in any noticeable way. I also no longer get PEM from physical activity, but the general ME symptoms remain, so PEM is a very common effect of the disease, not an essential part of it. From my perspective, SEID doesn't describe my disease. CFS doesn't fit, since it's not normal fatigue (I'm feeling real normal fatigue right now). I don't know whether ME technically fits either, since we don't know the real mechanism. Until we do know what the real mechanism is, I don't see anything to gain by arguing about the name or changing it.

If the problem is people unable to find information about "why they feel lousy/tired all the time and worse some time after exertion" then there are better ways of solving that.

 

The problem with renaming the disease is that at this point, all the proposed (and used) names are purely guesses about the defining qualities of the disease, and by applying an ignorantly-chosen name, we apply a bias for how to study it. If even a few people fit all the other criteria but lack PEM, then defining it as a PEM (or exertion intolerance) disease is misleading. Naming it a fatigue disease is misleading too, since there's no proof that our fatigue-like symptom has any relation to regular fatigue.

My proposal for a name: "Mysterious Disease #1".