Posted , 15 users are following.
When i try to read my mail it comes up with the message the page you requested does not exist.
so i have sent this message by using a old mail sent to me .
could it be that i have joined healthunchecked.
sorry to be a pain.
margaret
0 likes, 58 replies
EileenH margaret22251
Posted
I had that with a post this morning but like you used a different way of getting in. This time I was able to access your post from the email.
I think patient.info has tried to do too much, too fast and without thinking - just like the NHS IT scheme. The forum has been very quiet recently - I wonder if they have succeeded in strangling it yet again. In the time I've been on this forum, this is the third attempt.
Harrie4 EileenH
Posted
Its funny -- as in funny = strange -- I've had that feeling too. Some of the functionality on this platform makes it less and not more user-friendly. I can only wonder where the benefit lies with decreased functionality.
I'm not going to let this curtail my use though.
pam7653 margaret22251
Posted
my attempts to read these posts did the same thing. I'm glad its been fixed
Silver49 margaret22251
Posted
I have had the same problem.
Anhaga margaret22251
Posted
If the idea was to cut back use of this forum by us hyperinvolved PMR/GCA patients they've been very successful. I enter the site through a shortcut to the home PMR page on my desktop. Have found using the site to be painfully slow since the latest "upgrade".
EileenH Anhaga
Posted
Glad someone else finds it slow - not just me!
peggy_56092 margaret22251
Posted
I have noticed fewer PMR discussions.
track peggy_56092
Posted
I also Peggy, not good at all.
Track
margaret22251
Posted
PHEW! thought it was just me, i hope we can all continue to message as i learn from you all.
Harrie4 margaret22251
Posted
And the beat goes on: just now I got an error message and had to enter by the side door.....still works but many more clicks.....
I wonder how many folks no longer bother. The site has been quite subdued these past few weeks....
EileenH Harrie4
Posted
I'm sure it has had an effect. So annoying after over 10 years of a really good forum.
Silver49 EileenH
Posted
It's a hit and miss with the forum just now though I've not been on because first OH had a nasty virus which is on the rounds and now I have succumbed. Have to keep moving though..... nothing else for it. OH still not great. I'm continuing to reduce and hoping the virus doesn't cause a problem.
EileenH Silver49
Posted
Get well soon - both of you. Seems to have been a rubbish xmas and NY for loads of us!!! My OH is improving - has gained some weight back but given the extra choccy biccies and nutritional supplements I'd hope!!
Silver49 EileenH
Posted
Thank you, Eileen. Glad David is gaining some weight. It's not easy when they lose, whereas I would gladly lose some. Doesn't seem to be how it works, unfortunately. I hope 2019 proves a better year for you both.
macas02 margaret22251
Posted
SAME HERE ITS SUCH A PAIN. I AM ON ANOTHER PATIENT FORUM AND ITS HAPPENING THERE TOO.
ptolemy macas02
Posted
I think it is happening on all the patient forums. Real pain, I just don't bother to look at the messages because of the effort.
Anhaga macas02
Posted
I follow a couple of others too and there's been hardly any activity for ages.
macas02 Anhaga
Posted
Lets hope they get it right soon, where would we be without this forum
priscilla23271 ptolemy
Posted
I didn't realise there was a problem until someone posted about it, because I always come on to the forum through the link on one of the latest emails.
EileenH priscilla23271
Posted
So do I - and the link was not working. At all - didn't exist it said. Which wasn't true - I cam by the side door too because I'm keen enough to do so. But I think a lot of people aren't, especially when they are unwell.
Silver49 EileenH
Posted
It's a shame because that's when people need it most.
EileenH Silver49
Posted
But let's face it - all the changes in the last 3 iterations could have been designed to kill off the forum so they don't have to be bothered with the halt and maim. Bit like sneaking privatisation of the NHS...
Harrie4 EileenH
Posted
I'm trying to figure out the cost-benefit profile. The benefits include reduced demand on health care service providers and revenue from click bait portals as well as general data mining opportunities. The cost is the odd fix or patch. When you google the organisation behind this portal you see that they provide a vast network of inter-related e-solutions that seems to constitute a highly complex digital infrastructure to the delivery of health care. There's profit and data to be generated throughout as long as maintenance costs are kept down. My sense is that the support crew for our little piece of the data farm invests as much as we earn for the organization and not a bit more. Maybe there's a tax write-off on taxable revenues generated in other products they provide. Another reason to keep their maintenance costs low on this service.
That said, its still a great resource. We have nothing to compare with it here in Canada where, I shld add, privatization is also slowly creating a two-tiered health care system. This platform and the knowledgeable participants it hosts -- you know who you are-- has made my life with PMR manageable. I'm grateful.
priscilla23271 EileenH
Posted
Do you think its because the doctors don't like the patients sharing information and becoming more knowledgeable than they are about our diseases? Certainly my doctor hates it when I argue with him over various things that I've learned on this forum.
EileenH Harrie4
Posted
And in the UK there are/were 3 forums all with a similar standard of PMRGCA advice when all were up and running properly. All 3 started here...
EileenH priscilla23271
Posted
Problems here probably aren't related to that - they get a lot more feedback from the HU forum I imagine!!!!
Flutterbie57 EileenH
Posted
I am in this situation at the moment Eileen. I can't think straight. I am very frustrated at the moment as I am looking for a topic I read the other day about a private message scam, by one of the Mary's I think. I do so hope that they will list the subject of the topic under notifications, as I can't easily refind it now. Subject I remember, better than names.
All I want to do is ask if the private message is allowed. It is advertising some radiation protective blankets. The first part of the persons name is 'died'. I thought it was going to be a sad message.
My head space is not in a good place at the moment, because of a drama filled Christmas and new Year too. My memory is shocking. I could not think how to report it to Alan and I know it is on that post, and I am so frustrated I can't find it.
Can someone give me instructions please ?
Anhaga Flutterbie57
Posted
It's possible the post was already deleted. If you notice anything like this again there should be a word "Report" in red letters at the bottom of the post and you can just click on that. I think you have the same opportunity to report with private messages as well.
Sorry you have been having a difficult time.
Flutterbie57 Anhaga
Posted
Thanks. I so easily get in such a flurry at the moment. It is out of the ordinary. I don't know what is happening inside my head. I talked to the Dr about it, but we are both just hoping it will go away. It is not good timing with the new site. Next time I will try and take a big breath and read all the instructions. 😃
I have now found Alan. He has a message on this post.
margaret22251 Flutterbie57
Posted
Hi sorry to hear you are having problems, I did wonder why you had not been on, take care and keep in touch with us all it helps to talk
EileenH Flutterbie57
Posted
No, any advertising is NOT allowed and you should report any such pm immediately. The user will be blocked if they are advertising or trying to masquerade as an ordinary user to post about "this helped me".
On every post - including a pm from someone - at the bottom left you will see a little red flag and the word Report in red. Click on that and a menu drops down for what you want to describe it as. It's probably worth keeping a note of how to contact Alan because he gets something done, while the other moderators are what I can only call unreliable I fear! And Alan has a load of experience so recognises anything dodgy - spider senses!
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