Does anyone know when the next issue of MPD Voice is due out? Is it overdue?
Anyone think this website is getting a bit too slick? Not so cosy maybe? Are all my playmates, like me, posting a little bit less often. Are we not so comfy with the new format? I know we all agree,, the more the merrier, it's not that. Can anyone else put their finger on it or is it just me being CrazyDaisy as usual.
Seasons Greetings everyone!
can you explain a little clearer what you mean daisy as I am new here what format has changed etc please
It may just be me but I seem to be forever signing in when I ask to be kept signed in and then after I do there seems to be a bit of jumping around before I get back to where I was to answer a comment etc. Maybe I'm just out of practice after a "not so good health" period. Nice to meet you Shelly. It is great we can all get together for support and to compare notes discussing our ups and downs. It would be nice if many more health professionals could read all our comments which would give a valuable insight to those who are not so familiar with the day-to-day challenges of living with an MPN.
Hope you have a lovely Christmas and New Year with all your family.
Lovely to meet you to x just a thought but could we do a leaflet froma patients perspective so that people in general and the professionals know what we are going throughx even though the condition seems different to each there are similarities between us all x don't know if this is possible justa thoughtx
I will be putting the newsletter on the website this week and posting it out to people who receive news by post, I will let everyone know by email and on here. Maz
thank you maz
Thank you Maz. You are always so quick to reply.
Initially I was slightly confused but correct me if I'm wrong. You do just mean the health unlocked forum is too slick? I had inititally read it as the website ie MPD voice, because the first question was about the newsletter!
I do agree about the ease of use of the health unlocked is cumbersome, the fact that checking "keep me logged in" doesn't work! I know that there have been some posts before about it, and I think from memory somebody contacted the health unlocked admin, and it may have been resolved I will try now because it does frustrate me too! I will let you know how I get on, and maybe that can resolve it for you too.
Think we'd all agree website and newsletter are very good!
A few of us have contacted the admin people about these problems, and they do say they have resolved them! Obviously not, I wish they had left it as it was when we first started our community on here, it was so much better. I also think it has been a bit quiet lately, maybe we don't have much to say and we are all keeping well, I hope that's the reason anyway. Thanks for nice comments about our website and newsletter, Alisia does such a brilliant job writing and editing the newsletters, she always makes them so interesting to read. Maz
Morning all....yes, Crazydaisy, I'm pretty much of the same mindset as you. I used to regularly check in on the site but the repetitive logging in means I only pop in perhaps as little as once a week now, if that. Maybe it's my laziness (or fatigue!) but the sites accessibility is not what it was. Editing messages seems tricky too-I don't seem to be able to add/subtract words or correct things (I know I'm a bit 'anal' about punctuation but I can't put an apostrophe in the word 'site's' back there & it's niggling me!!!). Upshot of all this is I don't now make the most of this very valuable resource & that saddens me & makes me ponder on whether we're losing precious contributors? Keep well, all, Poll x
Hi everyone,
I agree wholeheartedly Daisy, the website isn't nearly as good as it used to be.
You can contact the admin department if you hunt around on the health unlocked website for help and contact.
Email only and it takes some time to get a response.
I feel it's getting a bit facebooky!
Not that I do Facebook, haven't got time, but I do have a Facebook page and it drives me mad because I keep getting emails asking me if I know people I've never heard of.
Why?!
Anyway, I had to finally register a new email address and use that to rejoin.
I spoke to someone called Adeela at health unlocked and she said that they do have problems with tablet users other than laptop, so if you're on an iPad that could be your problem - although mine seems to be working ok at the moment.
Try creating a new email for yourself. Total faff I agree, but seems to be the only solution.
Louise
x
I wrote a long supportive reply. Then the postman knocked the door and when I got back it had gone! So I'm trying again. The site can be frustrating to use but I love the link with Patient Power. I think it is so sensible to link the two sites. American business seems so much more supportive of health education which allows a direct flow of information from the Ash conference rather than searching for stuff on you tube after the event. Also the specialists over there aren't camera shy so I feel that although no great break through is likely to happen in my lifetime that I really am up to date. Also I find the exchanges of information are really helpful on this site. You know how sometimes you read a post and think, yes that happens to me as well but without reading it I would never have realised.
But I'm stopping typing now before the gremlins test my resolve by eating yet another post.
How nice to hear so many empathetic replies. Yes, a bit facebooky would deem an apt description. We don't need that really. I deactivated my fb account some time ago. Of course some things will be better but not necessarily everything. I feel in our own individual ways we have gotten to know and understand each other and Maz also being a conduit to Dr Harrison as well as "just one of us is great". Shelly your idea of leaflets is a good one but earlier this year, MPN Voice sent out info to various organisations as well as gp surgeries including my own. I have never seen nor heard anything surface and suspect much of it went unread. As we say so often you can take a horse to water but you can't make it drink. However, on the positive side Shelly, Maz may be able to supply you with some leaflets as we have to keep trying to educate those who don't understand our conditions. The info is out there. Good luck!
Thanks to this site is members and maz and Angela am at last starting to understand my condition as you say daisy we have to try and educate our doctors etc all seems a very up hill struggle which as we know isn't easy when you not well
Hi, I'm new here and too scared to start HU
Hi I am new and have been diagnosed with ET Jak2
Hi all I'm new here
Hi everyone I'm new here, from NZ with ET JAK2+ plus low Von Willebrand Factor VIII
