DO NOT LIKE NEW FORMAT!!

NO!!! don't give up! I tried to get on healthunlocked awhile ago and for whatever reason was unable to do so...kept saying I didn't have permission to do so????😱😠😲

You hadn't signed in - even if you had checked the bit that says keep me signed in it has a hairy fit every so often and signs people out for no apparent reason. You can read things that are not posted with a locked setting but you can't comment without being a member of a forum and signed in.

No!!! missmagwumps, I'm so sorry....i didn't see your post. I've got a feeling I've not seen several posts.😠

I've had quite a day and am probably going to create a new discussion so i can respond to all you kind folks at the same time.

sorry, I just don't know how else to do this right now😕

My suggestion is to make the reply button a colour again not GREY!!!!! black or dark blue something that stands out similiar to your report button. thanks

It is HIDEOUS. It is cluttered and confusing. Yes, it is easier to read in some ways because the type is bigger (TOO big in fact) - but it is far more difficult to find anything and even I, who am a member of several forums and do a lot of internet stuff, am struggling to find my way round.

You have to remember that almost all users on this forum are over 50, several are in their 80s. We ALL have at least one chronic illness and some of us have visual issues as a result. In the last few years there have been 4 or 5 revamps or fundamental changes and each time we have lost members as a result as they gave up the unequal struggle.

You make these changes without thinking of the users and without even a graded change or an article to tell us how to find the thing we found easily yesterday, I took delivery of a new washing machine yesterday - dragging me into the digital age - and after a demonstration and single reading of the instructions in German, I can use it. THIS is going to take me weeks to suss out because it isn't as intuitive as you probably think it is and I have no guide at all.

Like LodgerUK I have been here a long time and have endured your messing about. This is the worst so far and is possibly enough to make me feel it really isn't worth my effort. I spend a few hours a day on the 3 PMRGCA forums in the UK and feel I have been able to contribute something to the PMRGCA field for a lot of people all over the world. This will cost me not only a lot of time looking for things and losing things but also worry me about not replying to people asking for help.

"you just need to type them in"

One example - what do you mean by that?

I don't want numbered lists, I don't want lists at all - I want to be able to type a simple comment and post it.

Eileen has said it all.

I don't know the median age of your staff but I'd guess early twenties if not younger. You all grew up with this stuff; we're all trying to learn and we don't have your still plastic brains

When Russia or someone pulls the plug I can offer lessons in milking a cow, lighting a fire and making bread from scratch without a machine and baking it on my wood fire!

@freda07782 I have raised this with design - thanks for bringing this up.

EXCELLENT Eileen!! couldn't have expressed it better myself. this is so confusing...I can never tell how/ where/when I'm responding to someone!

I do hope there's HOPE!

I don't wish to start all over on a new forum....too much to explain to new folks...

The tl:dr; ??????????????????????????????????????????????

LOL, lol 😂

Well, quite....

Hi lodgerUK_NE

I think tl:dr means:-

tell lead developer rethink...😊🤗

And that hardly makes sense to mere mortals does it? Like the row of icons - a question mark that means Markdown Guide it tells me. What is that?

If I submit a piece of scientific writing that does not define things the first time they are mentioned I would get a smacked hand. I speak two languages fluently, can make my way with 2 others, speak scientific and medical English as well as the everyday variety. But I don't expect anyone else to match up to that. So why should I be expected to understand all this without access to their dictionary?

so glad you cleared that up for me as well! 😱

btw....I tried again to repost my pic of Cody, still unable to do so! not sure why, but sure would like to show you my adorable, goofy therapy dog 😏.

AMEN Eileen! completely agree. what a freakin mess!

Hi EileenH

Haha! Sorry it was meant to be a joke..🤗...i've no idea what it means either just matched the letters with what is going on at the moment on the forum...telling the lead developer to rethink about the new format..😁👏...i'm so sorry if i misled you it was just to have a laugh and a joke.

Sorry everyone it's just my sense of humour.......good thoughts and wishes to you all...😚

Hi lynda62707

I did send you instructions have you not receive my them?..🤔🤔

Hi lynda62707

I guess you saw my reply to Eileen..I am soooo sorry..i thought everyone would see through the message and joke regarding lead developer who i assume is jetski. I do hope jetski has seen the jest, if he has read my reply🙄😕.....sincere apologies.....

No problem - tl;dr; is short hand for "Too long, don't read"... aka - give me the summary of what you are talking about. I am just used to it.

There are some bug fixes due to go out today/early tomorrow based on feedback.

@freda07782 I am going to change the colour of those links for you. That should go out tomorrow or Friday.

I did wonder so don't worry because is IS funny looked at like that.

But isn't that the point I'm making? Without a lexicon of some sort it has become gibberish. I assume that THEY all know what everything is because they work in this and have been playing with it for weeks but they have taken away what we are able to use easily and well and chucked in a format that obviously hasn't been properly checked or there wouldn't be these glitches.

I, like the rest of you, am old enough to remember when things were launched only when they had been thoroughly tested and worked pretty well. Now they fiddle about with something and then leave it to the consumer to find their mistakes, Look at the most recent Windows 10 update that has deleted people's documents irretrievably as the space has been replaced by the update. Both I an my husband groan when we are offered "Update and Shut down". It cost us to get a brand new computer that came with W10 sorted after an update fried it - our guy told us about 1 in 10 computers suffer at some point!

There are repeated discussions on the forum about the role of stress in autoimmune disorder flares - I spend hours on the forum as you well know and this morning by the time I had finished on here I was nearly in tears and just feeling defeated. I'm having to force myself to comeback.

The old Patient emojis were unique. I already have the "new" ones on my touchscreen laptop and I've always wished I could use a couple of the Patient ones on other sites! But that's just an unimportant detail.

I'm sorry to have apparently lost my history.

I think he meant type in the emoji or emoticon.

I should have said in my other reply that I appreciate the fact that you're reading these comments and responding to them.

I looked it up on the internet. I think in this context it may mean "short version". But I shouldn't have to resort to a dictionary to interpret, right?

Hi Eileen H

I wholeheartedly agree with you Eileen. Perhaps the powers that be should consider consulting forum members before they make these changes. It would save a whole lot of upset and would make the forum members feel they have a part in the decision making. Certainly don't give up i'm sure your made of stronger stuff than that. Hang on in there your knowledge is an integral part of the forum as are all the members comments and advice. C'mon chin up fight another day...💪✊👍😊🤗

LOLOL, lol, lol😁😁😂😂 you GOT me mary! you little goober....I should know better....you've got a sense of humor just like mine!

kms...."keep me smiling"!

I have given up the will to live!

Eileen....I'm sooo sorry you're feeling so stressed out by new format. I can so appreciate what you're feeling. I'm finding my posts and responses are so out of order, I'm not sure ANYONE is receiving ANYTHING from me!😡

So frustrating!

I hope the appropriate "fixes" can be made ASAP!

till then, please hang on and "keep on swimming, swimming, swimming"!😝

@lynda62707 out of order??? have you got a url or two i can look at?

i havent seen this one yet.

The advantage of the interim version, the one we all hated because it was hard on the eyes, was it was actually fairly easy to see who you were replying to and carry on a reasonably comprehensible thread, at least once we had got used to it. Right now it looks like the replies are all jumbled together so I have replied to several different comments by different people in this post, yet my replies appear one after the other, chronologically, therefore making no sense. Another example, your reply to Freda had me scrolling back up to find Freda's comment so I would know what you were talking about. The whole thing is like this now.

This may work well for a simple question/answer type activity. As you know, most of the Patient forum is not like that, it's much more conversational. Losing that particular function is what's contributing to our frustration.

How do you mean? That doesn't explain to me what to do.

just for the record....I'm getting REALLY p/o'd at while typing a response, I go back to my email only to find 5 more responses....NONE, of which I can match to anything that makes sense to me!

do I Really have to p/m everybody in order to keep things straight??

this isn't working 4 me....STRESSING me out even more than my medical problems!

I love you all and DON'T want 2 loose touch....HELP!😢

So have I nearly.

yeah I tried your instructions but 2 no avail!

this all is driving me NUTZ!

I'm thinking I can ONLY rely on private messages right now and that really "sucks". it seems to me the whole point of this forum is to be able to receive several answers to questions all in some type of order....Ughhh....not "feelin it" right now!

Well, that's the problem, isn't it? The developers are thinking, oh they (meaning us) can just type in the symbols and get the little faces, no problem. But most of us are kind of limited to smiley, laughing and sad faces, we don't know how to get the surprised face, the angry face, the rolling one's eyes face, you know what I mean.... I don't know how I could find the emojis if I didn't have the kind of computer I do.

I'm more disgruntled that in order to have access to history we'll now have to pay a fairly significant monthly fee. It's not worth it to me. I'd rather spend that kind of money so support The Guardian, for example.

@Anhaga interesting, whilst i hadnt noticed it, i will bring it up with design tomorrow.

I have some ideas on how to address it, but will let them address whilst I tackle the issues people are having with the editor tomorrow. The non capitalisation of the first letter is bugging me too 😕.

How do you do that?

Hi Nick - Is there any way we can see our previous posts and our replies to other posters? I want to check up on something but can't figure out how to do it now.

hang on, what do you mean by history?? do you mean your list of notifications and activity list???

if so... you 100% dont have to pay for that. There was a bug that hid the link, which is due to be fixed tonight or tomorrow.

try this url for now

NOTIFICATIONS

^^^ from there you can access activity

@MhairiP i just posted a link in another reply, could you try that and tell me if that solves the issue? (i may have missunderstood)

@Anhaga let me have a think about the emoticons - as im working on the editor tomorrow i will add to my list of things to address, if i can.

Do you mean your reply to @ptolemy with the link to Notifications? If so, that's not what I meant!

I'd like to see a list of threads I started or threads that I have contributed to.

When I use the search facility, it searches the whole website for a phrase, rather than just searching this particular forum.

Also, I've just noticed that to access my history, I have to upgrade to "Professional Plan" - I take it this means I have to pay?

I have always had a profile page that listed all the threads that I had initiated previously. I have used them repeatedly, they are my library to refer people to or to find the thread I want and then copy and paste to save me writing for even more hours than I do anyway. On another forum I had an entire section which I spent days transferring when that host went pear-shaped but at least I had warning and could do that. Now it would appear I have to scroll through dozens of pages to find them. Which frankly, I have no intention of even trying to do.

Now maybe that still exists - but I have no idea at all how to find them, nor, it seems, do others.

Notifications only tell me what others have written - that isn't the point. I have emails to tell me that as well. I want to be able to find MY posts from the past - not the replies, too many of those.

don't joke like that....you ARE joking..right???!

Can you try this URL??

Latest Discussions

Seems the header needs some styling. I will try to address profile pages next week.

I mean access to all my old posts and replies, etc. I haven't any problem accessing current unread notifications, although all the ones I've read disappear.

This is where you go when you click on "History" in My Account:

https://auth.patient.info/my-account/subscriptions?returnurl=https://patient.info/my-account/tracker&referrer=patient

jetski....I can't POSSIBLY be the ONLY one having problems in following new format...can I??

Everything is SO out of order, and I keep getting bounced from place to place losing track off just where I'm at!

please...can something be done to make this LESS complicated?? I'm already stressed enough and would like to put less energy into trying to navigate my way thru all thus!

Just look at the conversation - it makes no sense at all and you can't work out which comment was being replied to. It is difficult anyway but this is impossible and very confusing, especially with a lot of angry and impatient contributors.

Why on earth can't you just change a couple of things at a time? Instead of upsetting the people who make it what it is? Because being asked to pay to do what I do is the final insult to a volunteer who doesn't have an income besides her pension. Without patient.info there wouldn't be the PMRGCAUk charity in the first place and that has kept me here through all the interim versions. But honestly - this is just about the final straw.

No! MY posts, MY threads, the maybe 60-odd I personally have initiated in the last x years. They were listed on my profile and I could scroll through a few dozen instead of hundreds.

Maybe you need to speak to Alan - I'm sure he can explain...

Just to be picky the word RECEIVED is spelt incorrectly (RECIEVED)when private messaging.

EXACTLY!!! that's what's driving me NUTZ right now...everything's out of order and makes no sense! by the time you read one reply and type a response....it seems you're lost in the shuffle and what yiu type looses relevance...

UGH....want to get back to normal! don't have the patience for this right now!!

YOU GO GIRL!!! BUT PLEASE DON'T LEAVE....WE NEED TO KEEP THIS FORUM GOING! But jetski...LISTEN TO ALL THIS FRUSTRATION....WE ARE THIS FORUM.....!!!

@EileenH AH!! Now i understand, I will look at this first thing tomorrow. Give me a day to see if i can get this back for you ok??

@lynda62707 I am trying 

Eileen,

I feel so bad that you're feeling so frustrated with this new format as I feel you especially give so much of your time to this forum. I know you want to be spending your time helping people out rather than spending it figuring out how to use a forum they you've been using for ten years! Having to spend so much time trying to figure it all out is ridiculous and so frustrating. As you've said, and even in my short time on this forum, there has been I think 3, seemingly unnecessary changes, it just doesn't make any sense!!

You've helped so many people Eileen, myself included, and I know we would all be devastated if you packed this one in!

I hope the developers will work a bit of overtime and sort out all the bugs and again as you say, a bit of instruction would be helpful! No account has been taken of the age group and illness that we have, it's just techie youngsters who are probably bored and thought hmmm, we'll change Everything about this!!

Hang in there Eileen, we all hugely appreciate you💞

Thank you - but why was it lost in the first place? Things that worked well have been broken.

Thank you Mrs_H - I really am at the end of my tether tonight. I deal with probably 70-80 email notifications on a quiet day - 3 different forums - and on a busy day it can be well over 100. Today has been busy...

All have changed over the past few years, as you have noted, this one has been changed 3 or 4 times in recent memory. But never like this.

INGGGG! 88 responses to this post and I'm sposed to scroll and scroll to get to my answer??

I DON'T THINK SO! this is plain nutz ( and a little bs as well)!

Jetski5822, do we now have to subscribe to Patient to get our History?? I have links that Eileen sent me that I HAVE to get back to print out to bring to my next medical apppintment! Please let me know ASAP what I can do about this!

Also, when you go back on a word that's highlighted as an error, and start to correct it, it duplicates the work, very annoying!!!

I loved it.......................:(( or 😃) ???

No, as i mentioned earlier, give me a day and i will get the profile pages back in working order for you.

Eileen

You are so right, 5 of us met on this forum and at that time (yes just over 10 years ago) it had two threads, one for PMR and one for GCA.

Those 5, arranged to meet up (one of them as you know was me), we would not have met except for this forum and never started on a journey that has been relatively productive.

We explained to admin person at the time, that PMR and GCA were linked and within days a new thread, with all the old posts from both threads were together under a new thread. Marvellous.

Alan has been exceptional and so have others over the years. I am just wondering if they are reading what has happened.

I feel as though I am losing an old, trusted friend..................Patient info.

I don't know where this reply will appear as one I posted in reply to another on this thread is at the bottom underneeath a post, which bears no relationship to what I was answering,

If I believed in good fairies or knew one, I would ask for a wave of the wand and go back to how it was and hopefully jettski and co - could then ask us what we want.

All I ever wanted was an 'Edit' button. I wish I had never asked................maybe it is my fault as they decided to give us an edit button, did an upgrade and lo and behold.........no 'edit' button. Just chaos....................

And before anyone asks, I started out on a ancient typewriter, then electronic typewriters, Merlins, Diamonds etc............I would never have dreamt that eventually I would feel so defeated.

No-one, nowadays, has heard of the old adage, it it aint broke, don't fix it.

If you want to upgrade do it one or two things at a time never do a major change all at once. Humans don't like it.

Lodger, to be fair I don't think upgrades work that way. 😉 BUT they shouldn't be harder to use than the old way. Our local public library has recently done a major do-over of their website and I have to say I was taken aback the first couple of times I used it, but it was really easy to adapt and I can see the improvements. What's happened here is absolute chaos. Possibly this new format works with some of the less active forums, but I think we PMR/GCA folk are exceptional because our disease is so poorly understood and often badly treated by our own doctors so we are very active here and make full use of the contributions of people like Eileen and yourself and other knowledgeable oldtimers.

Maybe next time they should use us as the test subjects. We were warned this time that changes were coming, which I think was an improvement, although of course not everyone got the message and none of us expected to be flailing at the deep end of the pool!

They should be paying you for your brilliant, informative communications. Please don't go. I lost a bit of joy last weekend when forum emails ceased temporarily. My reaction was sadness at not having a source of communication to fill my day or evening.

I do notice that there is a price to pay for our educational benefits. Ailing older beings usually don't have funds to spare. I do hope this is not to be.

peggy, I completely agree! last weekend when I thought I'd lost all contact with all....I FREAKED!...just ask Eileen!! fortunately, she got me through, only to find a HUGE MESS, one that's making it next to impossible to obtain information from.

it's so true...I heavily rely on this forum to get more educated on pmr....my primary doc elected not to be involved and (thankfully) directed me to specialists. he just didn't know what he was talking about!

which brings me back to this forum....it is so incredibly important (not to mention) helpful!

I'm hoping to see things straighten out pronto!

I'm too tired and frustrated to keep on "messing" with it!

• WHAT -N- THE HELL IS GOIN ON??????

  ALL DAY LONG....."OOOPS, THERE'S AN ERROR!!"

  IT'S A MIRACLE I WAS ABLE TO GET THIS TO GO THROUGH, AND ACTUALLY, I'M NOT SURE IT HAS!!!

  ALMOST 100% OF MY EMAILS ARE INCAPABLE OF PUTTING ME THROUGH TO THIS FORUM....EXCEPT 4 YOUR'S!

  THERE'S ALOT OF ANGRY,FRUSTRATED FOLKS OUT HERE!!!

  WHAT IS GOING ON???#×\£##-÷\/&#😣😣😣⚡⚡

Hi @lynda62707 sorry about that - one of our servers was erroring, we dont know why but are looking in to it.

When that happens its just by chance which one someone lands on, and what's happened in this instance is that you landed on the bad server.

We have restarted it and will keep an eye on it.

Again, apologies for the outage.

@Anhaga im trying to keep up with the feedback - I understand how important the forums are to you, hence why I am trying to help.

This medium of communication is not alway the best, so if I ask alot of questions, its only to track down the issue so that I can fix it.

I want to reply to Eileen, ..... hope this is you!!! Before this site implodes just wanted to THANK YOU for all the time and wise words of comfort you have shared with me and all who read these messages. ive learnt more on this site than any doctor has shared with me. It will be a sad day if they cant get it back as to how it used to be. keep well and a million thanks from a very grateful PMR patient. Freda

Eileen, just sent a thank you message which seems to have disappeared, sorry if you get two. BUT wanted you to know how valuable your texts have been and to thank you for your time. better than any doctors visit!!!!! KEEP WELL AND A MILLION THANKS!!!!!! Freda

Finally....Wfewww, thanks for your input AND your apology _tho I'm well aware it wasn't YOUR doing-I guess you had to take all the heat!

so for that, I offer MY apologies!

And what's happening now with the change in my post to italics??

ah boy....I think I should just call it a night!

sweet dreams to all....catch you in the am😘💕

never mind.....just reread my post.

was only showing up in italics on my end!

like I said.....time to call it a night!!

As Lodger said the first day - if all else fails, you will find us both, and Anhaga and a few others from here with a lot of good sensible advice, together with an even larger number of PMR/GCA people than you meet here, over at the HealthUnlocked PMRGCAUk forum. It can be pretty manic but it does what it says on the tin.

I won't deny they have messed about a couple of times and their latest version is fairly similar to how this appears to be. But currently it works which this doesn't. I am really sad that this forum has been turned into a monster - and I suspect it is because patient.info is trying to be too many things at once. They told us the last iteration was a "fresher, new look" - the colours were a bit brash compared with the older greener, more relaxing version and it seemed less easy to read. This one is just unpleasant - the colours are dark and dingy and depressing. The pinned posts used to have a red corner which made them stand out - which was useful. Now they have a pale grey pin in the corner which isn't easy to see and they merge in with the following posts. People with any visual problems will be struggling even more.

I will give them a chance. But I say here and now - any more changes that haven't been thought out and warned of and which cause this much distress WILL result in me retiring defeated. I've given 10 years of my life to keeping this forum on track and guiding people through PMR and GCA. I do it for nothing - being slapped in the face like this is not encouraging. Because that is what it feels like.

Love your bit about the bread etc. I have also iterated these very words when I look at modern technology.

Hi lodgerUK_NE

So glad you appreciated the humour!🤗👍Things are not very funny on the forum right now though. I sincerely hope things get sorted out because for those folks with PMR GCA, especially the newcomers need all the advice and help they can get. .. good wishes and kind thoughts your way lodger....

Just to illustrate how crackers this has become: I got a notification about Silver replying to BettyE here. I wanted to see exactly what BettyE had said to elicit the comment. I had to scroll back for some 70 (yes, SEVENTY) posts in between to find it.

The site is so unwieldy now it clunks and jumps with every turn of the mouse wheel - enough to make it very difficult to count! Maybe that is because I'm old-fashioned enough to wish to use a proper laptop and mouse and keyboard but using the touch screen is no better. The site is even slower than it was before.

This is progress??????

My husband has worked in medical device invention and development for most of his life and everything for the last 20-odd years needed software. Inventing the device and getting it to work was never the biggest problem - it was getting the software engineers to understand what was required. The ones who "got" it learned how to use the device first and then got to work. Until they did that they were providing what they wanted - and not what the device needed to do its job.

Hey Eileen....you AREN'T KIDDING!! I had to scroll and scroll (didn't count) in order to find your post!

Perhaps they could make it so when you open up an email, you'd go DIRECTLY to the appropriate post of which you were checking!

may be a "wild -n- crazy" idea but.....JUST SAYIN'!!