Catastrophism, Myalgic Encephalomyelitis-Chronic Fatigue Syndrome and Fibromyalgia: how research questions ‘construct’ realities, 2025, Oter-Quintana+

[SNT Gatchaman]

Catastrophism, Myalgic Encephalomyelitis-Chronic Fatigue Syndrome and Fibromyalgia: how research questions ‘construct’ realities
Oter-Quintana; Alameda-Cuesta

Letter to the Editor. No abstract.

Link (Enfermería Clínica (English Edition)) [Paywall]

 

[SNT Gatchaman]

Over the past few years, we have been involved in several research projects involving people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). In reviewing the literature to contextualise this research, we were struck by the number of studies interested in catastrophising. Defined as ''cognitive and emotional processes encompassing magnification of pain-related stimuli, feelings of helplessness, and a generally pessimistic orientation'', our initial impression, based on previous research experience, was that this was a less studied phenomenon in populations affected by other health problems.

To confirm this impression, we conducted a simple literature search in three of the main health science databases […] we explored the phenomenon of catastrophising in other clinical conditions where it might also occur in the context of coping responses due to its impact on people's lives. These were chronic kidney disease, cardiovascular disease, chronic obstructive pulmonary disease, and cancer.

The results of our searches confirmed our intuition that the proportion of records retrieved referring to catastrophism is significantly higher when the study population consists of people affected by ME/CFS and FM. […] it is worth considering why this phenomenon is of greater interest for people affected by ME/CFS and FM. A possible answer to this question could be found in the history of ME/CFS and FM, diseases that predominantly affect women and which, partly due to gender bias, are replete with references to the psychosocial model of illness.

in the case of conditions such as ME/CFS and FM, the application of the psychosocial model has contributed to the psychologisation of the condition, explaining the emergence and persistence of clinical symptoms in terms of certain characteristics/conditions of the subjects themselves. The interest in catastrophising in this population would be nothing more than a manifestation of this tendency.

Far from being trivial, we believe that this recourse to the psychological/emotional contributes to the stigmatisation of those affected and to the invisibility of the pathophysiological processes involved in the development of these diseases. A question mark is therefore placed as to whether these are "real patients", with the result that they may be subject to experiences of vulnerability and even exclusion from the social and healthcare system. The burden of proof is placed on the sick person, rather than reflecting on the limits of the clinical or research perspective itself. […] this is a responsibility we should never forget when designing our research studies.

 

[Andy]

"it is worth considering why this phenomenon [catastrophising] is of greater interest for people affected by ME/CFS and FM"

I appreciate the main content of this letter, but I was struck by this. They seem to think that because something is being researched that it is of interest to the patient community, when I'm sure that catastrophising is probably one of the things of least interest to the vast majority of patients. The question rather is why is catastrophising of greater interest to particular researchers and funders who enabled these studies.

 

[SNT Gatchaman]

I think that's a language issue Andy. It struck me too but I re-read it as "it is worth considering why this phenomenon [catastrophising] is of greater interest for when concerning people affected by ME/CFS and FM". Ie why is it of interest to researchers?

 

[Utsikt]

I feel like they are being too nice to the researchers here. If they believe that the researchers are «constructing» a reality with their selection of questions as their title implies, it can’t amount to anything less than research misconduct.

 

[dratalanta]

"it is worth considering why this phenomenon [catastrophising] is of greater interest for people affected by ME/CFS and FM"

I appreciate the main content of this letter, but I was struck by this. They seem to think that because something is being researched that it is of interest to the patient community, when I'm sure that catastrophising is probably one of the things of least interest to the vast majority of patients. The question rather is why is catastrophising of greater interest to particular researchers and funders who enabled these studies.

Like others, I thought this was just unfortunate use of English. I understood “this phenomenon is of greater interest for people affected by ME/CFS and FM” to mean “this phenomenon is of greater interest to researchers in relation to people affected by ME/CFS and FM”. Many researchers have a bad habit of using “for X” to mean “in relation to X”. That’s fine for algebra, but not so good when X is a group of people.

Perhaps the author could clarify?

As you say Andy I don’t know think anyone interested in meaningful research would still be interested in ME catastrophising which has been investigated repeatedly and turns up nothing.

 

[NelliePledge]

I feel like they are being too nice to the researchers here. If they believe that the researchers are «constructing» a reality with their selection of questions as their title implies, it can’t amount to anything less than research misconduct.

They probably are being too professionally polite but they definitely deserve a chunk of credit for putting pen to paper on this

 

[Utsikt]

They probably are being too professionally polite but they definitely deserve a chunk of credit for putting pen to paper on this

Absolutely! I understand why they would not go further to protect their personal interests, but it’s a stark contrast to the BPS lobby that says whatever they want about us.

It’s a step in the right direction, but we’re not going to get to the end if everyone else keeps beating around the bush.

 

[Yann04]

I understand why they would not go further to protect their personal interests, but it’s a stark contrast to the BPS lobby that says whatever they want about us.

To be fair — the BPS do that also out of personal interest.

Protecting careers and pet theories — getting funding from insurance companies and welfare averse governments.

 

[rvallee]

I feel like they are being too nice to the researchers here. If they believe that the researchers are «constructing» a reality with their selection of questions as their title implies, it can’t amount to anything less than research misconduct.

Criminal negligence, even. Fraud. Disaster of choice. It borders on genocide, although we are not related or unified by anything and don't constitute a people, but as governments are concerned this is definitely democide, social murder. Except the medical profession is 100% responsible for this, as governments are only acting on what the medical profession believes and themselves act on.

This is just what happens when people work from a conclusion out, and fill the details as they make them up. The ideologues still have nothing. They will never build anything. Not a single thing.

 

[bobbler]

They probably are being too professionally polite but they definitely deserve a chunk of credit for putting pen to paper on this

Agreed. For once the correct subjects/sample are getting studied - let's hope it is the beginning of the right questions and people being looked at.

I suspect those two things interact as people with certain preferences attract themselves into roles where this is perhaps not just accepted but allowed to flourish. You can get paid for enforcing your belief system. There might be another group that simply doesn't have the tools to understand the sophism and point out the gaps in their colleagues' assertions and makes a judgement call that they personally have no advantage to questioning it. And then there are probably others.

This is an interesting starting point for someone to flag and posit as a big old question for them to explain and see how coherent they are, and whether/who pauses for a bit of self-reflection across those different groups.

I can imagine for example pasting this link onto the following thread: Brain Retraining treatment for ME/CFS and Long COVID - discussion thread | Page 13 | Science for ME

But it mightn't be productive as it is the bystanders and those who are open-minded to look at what they and others are doing and why, rather than those who've invested themselves to a huge extent into something based on said values, that need to be reminded of these nagging questions and how things should be being continually looked at etc.

It is important stuff but I imagine that there are all sorts of conventions or processes for change (people don't open their eyes to what they, or a friend or colleague they don't think 'is a bad person', have been up to as long as you give them excuses to bury themselves in the victim role and use faux offence) that need to be considered - and different parts of academic subjects might have different limits (apparently sociology can describe but doesn't offer solutions necessarily for example).

It is a sad truth that even if the poor behaviour comes from the other person too often the toys out of pram moment is very productive as a way to keep something someone doesn't want talked about off the table. And ergo of silencing those harmed by it who needed the status quo to be discussed, and the bystander to not errantly play the 'not getting involved' card by pretending it must be a two-way in some form argument rather than bullying/injustice/whichever flavour of one-sidedness etc. So effective that it has become a tactic and standard behaviour (if it wasn't before) for certain types of people, and I think there is an over-representation of this type involved in certain roles and areas.


It is clever to find patterns and ask why a whole area has ended up so out of kilter, as well as kind of something you'd think would be basic hygiene/the norm that processes would pick up for most professions

There is probably also lessons within this regarding culture and further methodological issues for certain professions and subject areas. For example it seems that many doing projects for courses find themselves hamstrung due to many factors we have discussed elsewhere (supervisor, play game, literature, need to get a job before you can make change - but also it sounds like they simply aren't given enough time, or credit for it if they did, to do a piece of research that would be 'proper').