Just a thought.
I know most of us have been posting and reading posts for ages. But please remember that there are those new to the forum.
So the use of acronyms rather than the proper term can be confusing. For example, HE and not Hepatic Encephalopathy. its easy to put the proper terms at the beginning and us the acronym later in the post. So for example type Hepatic Encephalopathy and then in brackets ( HE ).
Jim
Good point. 🙂
Yes , as I am new to the Group , well two weeks with Cirrosis since 2008 , I don't know half of what these things are
Where exactly are you going with this ? Most would agree that jargon and acronyms should be kept to a minimum. Don't really understand how you could possibly take offence.
It was condescending this post, when I first got diagnosed like anyone else we don't know what's ahead but we learn as we go along and some symptoms might not be relevant to everyone as we are all individuals. plus am sure ad we are all adults all anyone would do is ask if they were confused about something. it's a frightening time for anyone when you first get diagnosed and I know I joined this forum for support not to be scared by all medical terms the consultants were good enough at doing that!!
You do make a valid point LAJ123.. there are posts that I cannot make head nor tail of.. possibly because the conditions do not relate to mine. I know the jargon I need to know and possibly that's for the best... I think it would maybe take too long to type everything out though and if anyone wanted an explanation, I'm sure no-one would mind furnishing them with one. I do think some of the responses you have had are beyond rude though. We are all suffering in one way or another and should be supportive or just keep our mouths shut (in my opinion). Take Care Jim.
The use of abbreviations and text speak is a common problem amongst the forums and it can cause confusion. Over on the thyroid forum we get frequent reminders from admin about this.
Well I thank you, I've just spent the last five minutes googling something I didn't understand. And just for the record I was offended by that comment from Freeman.
Glad I'm not the only one who resorted to that! Don't feel so bad now...thought I was having a blonde moment!
Yayyy... I'm not alone in my ignorance .. maybe we need a new site... medical terminology for dummies... sorry... was that condescending...😱🙊😂😇... have a great day everyone xx
We could call it Dummies Dictionary (DD) 😂 Hope that's not seen as condescending...just pleased to know I wasn't the only one who struggled with some of the medical abbreviations! I knew PSC...because my dad suffered it...boy took some time to work out the rest.
Have a good day everyone x
I have PSC (Primary Schlerosing Cholangitis) so I knew that one but some of them leave me scratching my head.
Bless you...that was about the only abbreviated term I did understand....the rest I had to figure out for myself, really infuriating...got there in the end but took time.
Hope you're doing ok x
Thanks, I've only just been diagnosed so still getting my head around what I've got coming. Took them all year to find out what was causing all the problems but at least it has a name now, not that that will make any difference. Sorry about your Dad, can't have been easy for you x
I'm really sorry to hear that and, yes, it will take time to sink in and come to terms with.
My Dad, sadly, was unlucky in that the bile ducts that were blocked couldn't be reached and so surgery wasn't an option. Miss him dreadfully, especially at this moment in time with my mums totally unexpected diagnosis.
Always here if you need to talk.
Take care x
Thanks, that means a lot. I know what you mean, I'd really love a hug from my Dad right now. I hope life gives you some nice news soon. X
I totally get that....no matter how old we get sometimes we just want that reassuring hug from our mum or dad, it's instinct, they have a way of making us feel safe when we feel at our most vulnerable.
Thinking of you and sending healing power hugs to you.
Jacqui x
I have to agree with you Jim.
I for one was confused by the acronym terms and not wanting to appear stupid resorted to trailing through many posts in order to eventually work out the meaning of HE etc.
I recently posted on another site since my dear mum was recently diagnosed with Small Cell Lung Cancer (SCLS)...and that was how I wrote her diagnosis, for the sake of others who may be new and, therefore, would not understand the term SCLC. It is ok to use abbreviations further into your post once you have written the full term initially, but I do feel, for the benefit of newly diagnosed people who are not familiar with the abbreviated version and indeed those who join to support a family member or friend, acronyms can be confusing.
Also, one has to remember that not everyone on the site is the patient/sufferer but rather the supporter/carer and, therefore, will not necessarily know all the medical jargon and abbreviations used so we should all be mindful of this.
Thank you for raising this, I certainly found the use of acronyms a little confusing initially.
Kind regards.
Jacqui
And quite what value do you think that your posts,Freeman 2016, have to use your own words added "to the sum of knowledge on this forum"?
Ok, so you happen to find LAJ123's post "patronising" but so what? Do you think that I or other forum members want or need to know that? Well, I for one do not.
I have been a member of this forum for several years now. I have read plenty of helpful/useful posts and also many that I feel should never have seen the light of day. But that is my personal opinion which I would keep to myself and not dream of mentioning in relation to any post lest I unintentionally upset the poster; however, I make an exception in your case
You appear to have joined this forum within the last ten days.Assuming you remain a forum member you will find that there are a number of members who are very articulate and very knowledgable but also quite a few whose spelling etc would win no prizes and whose knowledge of liver disease is sorely lacking or in some cases incorrect and these individuals often ask a number of really basic questions.Quite how many of them regard themselves as on a quest to become "expert patients", who can say?
In short, can I request that if you remain a member of this forum you desist from denigrating posts from other members; think it if you must, but please keep it to yourself.
PWBR
Agreed, very well said.
Hi, this is Lucy. I am Jim's partner and originally set up the account without Jim's knowledge. I wanted to understand more about what to expect from people who had been there - and did, thanks to the community here.
We share the account now an, as you know, Jim usually posts these days. I chip in occasionally with the 'other half'/family/carers' experience.
His interventions are intended to be helpful - sometimes, rightly, in my view - a bit controversial. Jim never expected this apparently innocuous post to get such a large response.
We would both like to thank the people who have added comments supporting what he said.
Nevertheless, like everyone on here, he has been through, or is going through, a lot. He is still sometimes fragile. The comments that seem so personally directed have left him hurt. If he doesn't contribute for a few days I hope you will understand.
With best wishes to everyone
L
Hi Lucy
I do hope Jim is ok and, for what it's worth, I didn't feel there was any need for such personal, argumentative comments to be posted.
I myself felt that Jims post was in fact very thoughtful, he was merely being considerate and mindful about those of us who join this site for support and information, just as you did, and may not understand all the jargon.
Please give him my very best wishes.
Jacqui
Hi just read all these posts n to be honest most people have to learn as they go , all remember what site your on ,everyone's going through different experiences,if people put h e instead of the real understanding of the word then so be it , you can't put a comment out asking for the right terminology to be wrote !! That's ridiculous,if your struggling ,look them up ,or ask .i find certain post,s are quite abrupt to be honest .remember this isn't face book , n sorry after the fact drops on deaf ears .good luck to all in your battles .
To be totally honest I saw this post and as just had a diagnosis and was looking for help.I then wrote a post myself hoping for understanding and help but as soon as I saw Freeman reply I deleted my post as didn't want them to reply to mine and was worried others might be so judgemental and abrupt.
I have multiple conditions and have been on other forums for awhile so have learnt some abbreviations acronyms but do appreciate when the full explanation is put first .
It is of course up to the member who posts but I can't see how this post could be upsetting or insulting whereas the reply to it has put me off posting here.
littleeffie, don't be put off posting at all. For the most part our forum's members are hugely welcoming and do our best to help and support one another based on our own personal experiences on our various liver journeys.
Some of us do forget sometimes (though try not to) speak purely in the acronyms forgetting that we arn't talking one to one with the initial poster and as such our HE's, AIH's, PBC's, PSC's and all sorts of other weird and wonderful things creep in especially when the original poster has only used the acronym. When I do see a new one popping up I do do a bit of research before seeing if I can reply at all - a recent examply was a lady who came on asking about WKS which I then looked up (Wernicke Korsakoff Syndrome).
Anyway my point is don't be put off posting, we have blips occasionally, sometimes it's hard to pick up tone in type face and it leads to miscommunication (minor clashes). It doesn't happen very often and I hope you can read my tone as a big happy welcome 
Post away.
Katie xx
Thanks Katie
I often use SLE,EDS,RA,SS,ThyCa,Rd,Crps,BPi,Mast cell,FM,NF1,in my replies to long standing members of other forums but write in full with shortened in brackets to new members who may not be aware although I do sometimes forget.I was just taken aback at the reply to this post as it wasn't saying you must just pointing out possibly regarding making things easier on New members.
I will I think just read through posts and replies to see if I can find answers rather than post for the foreseeable but I really appreciate you taking the time and effort to reply to me
Effie
Katy's right - please don;t be put off! Lucy
Hi Lucy,
Sorry to hear the effect that Freeman 2016's posts have had upon Jim - he did not deserve to be insulted.
Freeman 2016 describes herself as a member of the legal profession ( so am I as it happens) and appears to suggest that lawyers clients just have to accept the "legal speak" which lawyers will use and that likewise patients must just accept the "medical speak" which their clinicians will inevitably be compelled to use when dealing with them; alternatively Freeman advocates "own research" as the route to understanding the jargon which the professional will, she claims, always use.
I believe that clients and patients have the same right to expect that in the main their lawyers or clinicians will communicate with them using plain English; as with clinicians, there are rare occasions when it is not possible for a lawyer or other professional to "translate" the technical into plain English but there is never any excuse for a professional to use acronyms or abbreviations without first giving the client or patient some explanation of the term in question.
Please encourage Jim to read the daily batch of postings and where he wants to make a posting to do so without worrying about receiving unnecessay / not very pleasant responses from whoever
Peter
PWBR
I normally say HE because I cannot seem to spell encholopathy correctly..but I do have dyslexia and there is no spell check for it.
But your right, it's easy to forget many new people will not know what HE stands for. I'll try and do better with that.
xo
Kimberly
dckimberly I have started a note book with the abbreviations and the full spelling though I am aware that this may not be really much of a help to yourself I'm just saying from my own befit I have memory problems and spelling is really bad even when it comes to simple words sometimes. Don't you worry too much about the full spelling. xo
Jane
Nods, yes, I will admit that with the hepatic enchalopothy my memory is getting shot also, and typing HE is quicker. It sometimes takes me many many tries to get even simple sentences correct. Lol. I have to edit over and over..otherwise its gobbledygook! My hands also shake a lot!
Cheering you on!
xo
Kimberly
For years I have described my memory as being like Swiss cheese Lol I too am great at gobbledygook .
xo
Jane
Lol xxxxx
Oh, and hugs Jim, who is always so helpful and kind..I consider him a dear friend and his advice is NEVER lost on me!
We can't pls everyone all the time, Jim. But you are only caring for those new to diagnosis, liver disease and new medical terms. I think that's a good thing! And one to be mindful of!
xo
Wishing you & Lucy all the best!
Kimberly
Your American Pickle
Hi Lucy, I have been tempted to leave this site based on someone's behaviour towards me but it was the support I received from most members that made me think why should I leave such a great forum full of knowlegable people who are kind despite their own problems. tell Jim not to leave as he would be missed.
Best wishes, Julie x
Yes a very good point that, as when I first joined I didn't know half of the acronyms that people were using, especially in regards to illnesses other than my own. Cheers all Ian x
I disagree I think LAJ23 has been so helpful don't know what you are getting out of saying he is patronising, I can only say on my defence everything he has posted has been helpful.......Maria x
Instead of the finger pointing at those who do or do not understand some of the abbreviations posted on this forum, maybe the administration could post a page of commonly used abbreviations and what they mean. They could apply it to each forum and should be accessed from the home page. This way newcomers will have easy access and those that have trouble even finishing a text would not have the added burden of typing and spelling each medical term. Better yet if you could just click on the abbreviation and get not only the medical term but the definition of that term that would solve everyone's problems. Just thinking outside the box.
Great idea! We're doing the @ with names..why not with medical abbreviations also?
Sounds good, or even maybe use another key to bring up medical terms, so as to keep them separate!
I did not see anything patronizing also. Maybe the new person just took it the wrong way? If she/he knew Jim then they would know he's not like that, at all! Sometimes when we are new, and still tender from a diagnosis, we take things the wrong way!
Cheering everyone on!
Kimberly
I really hope that Jim and his wife are okay, and some folk should think before they start to certain things, knowing that the person who is posting has either or going through a tough time without all the pressure of someone just opening their mouth and could put more pressure on the persons illness............................Keep your chin up Jim I need folk like yourselves to help ME.............Maria x
Please don't respond to Freeman2016, who is clearly an internet troll. Every response form us feeds his need for attention. Don't feed the troll!
Hi everyone
Just to let you know that I deleted a few posts from this thread that were not in the spirit of the forum. Freeman2016 now appears to have deleted their account.
Best wishes
Carol
A final word and hopefully an end.
I want to thank the members of this community and the British Liver Trust, specifically Carol and Audrey for the support and good wishes.
I will be posting again and maybe get Lucy to read through what I have written before posting.
thanks again.
Jim
Yeah right, like wording it as Hepatic Encephalopathy rather than HE is gonna be helpful, lol.
Husband having transnasal endoscopy to check for varices
End of the Line...
New here - carer of husband with end stage liver disease
Alcohol and cirrhosis stage 3
Driving again
