Should we change our name: 'ME/CFS Skeptic'?

Should we change our name: 'ME/CFS Skeptic'?

Some people said it's confusing because it gives the impression that we are skeptical of ME/CFS (the illness) rather than claims and flawed research on ME/CFS.

Feel free to suggest alternative names in the comments below.

 

Skeptic: a person inclined to question or doubt accepted opinions.

 

If the aim is for the maximum number of people to understand immediately what your position is, without need of some however small amount of effort, background checks references or requirement of prior knowledge, then yes change it.

The name as is leaves room for misinterpretation, even though the meaning is ambiguous this is somewhat more likely to occur since skepticism directed toward the idea of this illness even being an illness, and of the characters and motivations of people who claim to have it, or those who’re labelled with it, is far more widespread and well established a practice, versus skepticism directed toward the treatment or non treatment practices for this this condition from those in authority and skepticism towards their claims of the necessity to publicly doubt and to and discriminate against those with the label or the symptom pattern, as part of this non treatment paradigm.
So comms wise for a non specific audience yes to change.

However that would mean losing at least some of the existing recognition for your site. Even if you were to gain it back potentially plus some.

More importantly the name is also very beneficial in its self as political message an act of reversal on the dominant narrative. The current name points to a reclaiming of skepticism and to what true skepticism can look like. Directed towards evaluating power and professional output and standards in research and medicine or lack there of, rather than the practice of punishing the hapless individuals who fall sick and passing this punitive practice off as some kind of professional or social act of ‘skepticism’. The name itself carries a powerful political message and I really like that. Excellent.



So it’s a good name now and it says what it means. Even if this may be an as yet unimaginable concept to an audience used to doubt that flows only downhill re this particular topic.


Also if your aim is to lure in a few people ‘skeptical’ of the illness into discovering your treasure trove of well researched information, then no keep it!

I voted randomly I may change my vote. I could go either way.

 

Exactly.

 

Sure. If people are at all curious about ME/CFS. Or open to developing a sense of curiosity.

But the difficulty with that approach is that most people are not in fact curious. Their own minds are either firmly made up or else they are assured that others have the problem handled in the correct manner or whatever doubts exist in the field, they’re sure that this problem is none of their business or problem to concern themselves with, if the experts are arguing with each other that’s their business.

If people were at any great scale curious or open to adopting an attitude of curiosity on the subject we’d not be where we are. The battle to ensure disengagement over interest or curiosity has already been won, and not by us.

 

I like the ambiguity in the name. It certainly made me curious to find out more.

 

ME/CFS Review
Inform ME(/CFS)

 

Something I like related to scepticism :

"It is bad enough that so many people believe things without any evidence. What is worse is that some people have no conception of evidence and regard facts as just someone else's opinion."

~ Thomas Sowell

Original tweet : https://x.com/DeryaTR_/status/1871909790504689963

 

Could be cultural/language differences that are playing a part too. As for me, it's very difficult to think that it's not showing scepticism, in negative meaning, about the (existence) of ME/CFS. Just like people "critical to EU" or "critical to foreigners" are actually very much holding just one opinion.

But this is just my opinion, the name is yours, and you should use whatever name you like the best! And as said, your name is already established and changing it might cause some more confusion.

 

Maybe just a small change, so you can keep the recognition but explains your aim/standpoint better. For example me/cfs research sceptic or me/cfs bps critic

 

I share this opinion (I'm from Yan's neighbouring country, with lots of cultural similarities).

 

I think you should change it.

ME/CFS [research] update(s)
ME/CFS research highlights

or digest, abstracts

 

I agree the name is ambiguous, but I also like the ambiguity. ME/CFS Skeptic sounds definite, sounds strong, which reflects your robust discussion and argument.

It may be that some people come to it misunderstanding what you are about, ie assuming you are sceptical about the existence of ME/CFS, but these are the very people who need to read your writings. Also I wonder if the ambiguity encourages new readers to consider the issues more deeply.

 

I quite like that the name has ME/CFS and sceptic in the title. But the exact phrasing “ME/CFS Skeptic” may scare off some more “casual” people. Especially when paired with your blogs questioning evidence a lot of people in the patient community have taken for granted, CPET/POTS etc.

For example I tried once to share your EDS blog to another support group and got a couple comments claiming it was “gaslighting”/“bps”. (Which is obviously ridiculous).

It’s hard being sceptical of accepted norms and figures, without making sure people don’t feel invalidated. Because you clearly aren’t invalidating their experience, but some people have tied their experience very close to the label it was given, and take questioning of the accuracy of the label as an invalidation on their experience. I experienced this myself when questioning the FND label, I think I upset quite a few people with the diagnosis.

I’m not sure what a good alternative would be, “Sceptic with ME/CFS”? Perhaps your name is the best of the alternatives, I certainly think “ME/CFS Skeptic” is far more memorable (and search engine optimised) than something like “ME Research Updates” or something.

I’m too torn on this, I won’t be voting in your poll. I really like the ring of “ME/CFS Skeptic”. But the first time I saw it I did indeed wonder if you were BPS because I interpreted as “scepticism towards the validity the syndrome construct that is ME/CFS”, and most people who are sceptical towards that turn out to be BPS.

Or alternatively, would it be possible to have a subtitle / slogan that clarifies. Ie. “ME/CFS Skeptic” (and under) “Building stronger evidence”/“Building the Evidence Base pwME deserve” or something less strong like “critical inquiry into a neglected illness”.

 

I personally like this ambiguity. Makes people who wouldn't look twice if it were the other way around take a peek they otherwise wouldn't dare if they knew it was actually criticizing the fashionable pseudoscience rather than fluffing it.

Especially when you look at 'professional skeptics' and how almost all of them gush over the blatant pseudoscience of psychosomatic ideology, thus exposing them as biased and not actually skeptical. It actually exposes how deep the problem goes.

 

@ME/CFS Skeptic when I first saw your name on the forum I remember being curious to know more about you and your thinking on ME and why you had chosen your name. Unfortunately, I am quite severely affected cognitively so I drift without following up on detail a lot, needing to be careful not to overload on too much information.

I like your name, but I can see the pluses and minuses.

 

I think that may largerly depend on your goals. For all I care you can name yourself XYZ and the analyses of your blogs would still remain as excellent as they have been.

However, I do think that it may be very possible that you might have a greater audience, go viral or something the like on Twitter if the name was a different one. Whether that is a meaningful goal might be a different question.

I hope more will listen to what you have said based on the merits of what is being said.