Acronyms and Initialisms

[johnwhitnall]

Acronyms and initialisms are shortened forms. They replace full names and special terms in text. Use them only if people recognise and understand them. Please take the time to write in full , this is a very helpful site, some people (including me) don’t always recognise the shortened terms. Stay Well

[AussieNeil Partner Administrator]

John, for instances where members don't first explain acronyms and abbreviations used in their posts/replies, we do have this pinned post covering those which are commonly used.

healthunlocked.com/cllsuppo...

Neil

[johnwhitnall in reply to AussieNeil]

Thanks Neil, if I don’t understand an acronym I look it up,. I fully understand people using them if it is a long term , CLL for example, but if it is short wouldn’t it be easier for the person who posts to write it in full rather than 10s or 100s referring to a list. Thanks again for the link it will be very useful

[JM10 in reply to johnwhitnall]

I agree with you, John. I'm afraid I just ignore a post where there's a set of initials I'm not familiar with. The way I see it, I have CLL, a consultant checks my bloods every four months, he prescribes things and I take 'em. Does he know what he's doing? No idea, but I consider it a slippery slope if I start delving into the world of CLL treatments. There are just shy of 70 million people in the UK. I don't consider I'm particularly important. Shielding since 2020, I've never been as relaxed and resigned as I am now. It's a febrile world out there, but it is pacific in here.

[johnwhitnall in reply to JM10]

I couldn’t agree more

[Spark_Plug in reply to johnwhitnall]

Please, acronym must become a pronounceable word when made up of a phrase's initials. Mobile Army Surgical Hospital = acronym, WYSIWYG = initials (at least I've never heard wi-see-wig spoken). 😉

[Agfar in reply to Spark_Plug]

What You See Is What You Get - computer related.

[Spark_Plug in reply to Agfar]

Yes! Just two examples to demonstrate difference, and a missed attempt at humor. 🙂

[Walkingtall62 in reply to AussieNeil]

Excellent thanks. I had to giggle at a few as I don’t understand the words - at all🤨. This site teaches us so much. Just wish people would lock their posts!

[craterlake in reply to AussieNeil]

hi Neil , thanks for posting the link to the acronyms .. i have never seen or heard of this list before .. i have been using this great site for 2 1/2 years and have had to google these abbreviations dozens of times .i am going to copy -paste it and print it out . then keep it handy by my computer.. happy thanksgiving ... blessings , james

[Spark_Plug]

A common convention is to use the full term the first time, immediately followed by the standard acronyms/initials in parentheses, then used consistently there after. A pain, but a pretty do able compromise. Example Chronic Lymphocytic Leukemia (CLL); Overall Survival (OS).

Note: some published papers will go as far as putting a key at the end of the article.

Of course, we all will default sooner or later but I try when I can. Or, if two members are both commenting to each others comments, then it is us that are listening in, that's when I resort to looking it up myself.

[BigDee]

Hello johnwhitnall

I understand very well and you would think in this day and age that it would not be too much trouble with computers to spell out the words rather than using. acronyms and abbreviations. Preferred form is to use full spelling followed by acronyms and abbreviations in parentheses.

[cajunjeff]

It’s a question of balance. I remember being confused and frustrated with all the acronyms when I first joined he site. I was interested in learning about cll, so I learned the main acronyms.

I try to make posts to new members understandable, but just as some people dont want to take the time to look up what FISH and mutated IGHV means, I am less likely to respond to someone if every time I write about a FISH test, I have to write out “fluorescence in situ hybridization” (FISH) and every time I inquire if a poster knows their IGHV status. I have to refer to it as to the “variable region of the immunoglobulin heavy chain” (IGHV) gene.

Your suggestion that we only use acronyms people recognize and understand unfortunately does not help much. Many of our newer posters don’t know any acronyms. I think of FISH and IGHV as being common cll lingo for sites like this, I had zero idea what they meant when I joined. Where would we find the list of acronyms people recognize?

Everyone’s time is valuable. It does take time to look up acronyms. But it also takes time to have to spell out every acronym. And if one takes the time to spell out fluorescence in situ hybridization (I have to look it up just to spell it) instead of FISH, will anyone understand the test better?

Like I said, it’s a question of balance. People who post should try to make their posts understandable. People who are interested in knowing the details of cll treatment and lingo need to look stuff up to learn it.

I think a lot of people on here will stop posting answers if , for example, every time they refer to a FISH test, they are expected to write it as “fluorescence in situ hybridization” (FISH) and if every time they talk about IGHV mutation status they have to type out “variable region of the immunoglobulin heavy chain” (IGHV).

There is no real shortcut to learning about cll. I was constantly having to google all the acronyms to see what they meant. FCR is another example. I would not expect any new poster on here to know what it means. But nor do I think it reasonable to expect that every time any poster on here talks about having FCR as a treatment that they have to type it out as “Fludarabine, cyclophosphamide, and rituximab” (FCR). Literally no one on here types out the components of FCR when referring to it, I would guess that most of the people who on here who know that FCR is a cll chemo treatment could not even tell you what’s in it without looking it up.

People get different things out of this site, including general info and support. For those who are interested in the technical discussions of types of cll and treatment options and such, they are going to have to take the time to learn the acronyms. It does take time and effort, and lots of people dont want or need that level of detail.

[Spark_Plug in reply to cajunjeff]

Well said, cajunjeff. If taken to extremes, we wouldn't have a community. Those that hold so much knowledge, rolled up their sleeves sooner and they're kindly helping us. This site is a gift. 🙂

[SeymourB]

johnwhitnall -

I agree. I think we should expand acronyms on first use. Maybe not CLL, or FiSH, or IGHV unless doing a tutorial on those subjects. Knowing the expanded equivalent of FiSH and IGHV really doesn't explain them because there's so much more theory needed regarding in-Situ Hybridization and ImmunoGlobulin Heavy Chains vs Light Chain genes, and how they change through hypermutation.

I also think we should copy and paste the name of a paper when posting a link to the paper, because links sometimes age poorly. With the title, the paper can still be found by searching. The publication name and year help let people judge the quality of the info. CLL papers even from the 2000's are often mostly of historic value since new research may have superseded theories or conclusions. It all changes so fast!

=seymour=

[TruthJunkie]

Yes! A very good and important idea, johnwhitnall! Thank you for making it!