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

"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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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').