I am happy with the level of involvement of the P.D.S in this Forum and recognise that there are times when the moderator has to intervene to prevent abuse or insults being displayed.I feel any concerns or changes we have wanted made have been accomodated.From my perspective this Forum has been a good use of the Society's funds.
I have gone back to the posting and realised I have missed the main point!!!!!!I think that if the staff of the P.D.S wanted to gather views from Forum members it should be in a completly separate section which is clearly labelled as such.It should not be part of any other section nor should it be in response to any postings.In some ways it could be quite useful to feel that our views were being sought on matter that concerned the Society or legislation that might effect P.W.P.
Staff members contacting individuals with regard to their views expressed on the Forum would be very inhibiting and I am against it.
Is there some way of displaying the posting to which one is responding?
I see no objection to such activity by PDS staff providing it is made clear that views are being sought and for what purpose. For clarity, I feel a dedicated forum should be set up and the ability to create threads be limited, possibly to forum moderators or to designated approved individuals.
Given current ongoing and future legal action by some members, care should be taken when choosing subjects. Opinions should not be sought on subjects which may jeopardise a member's case.
"Any such posts would be to gather your views on issues, and would not be in response to postings from forum members" (quote from original post). I think that gives the reassurance that ECD is looking for.
Let's suck it and see.
Thank you but I am aware of what was said in Emily's posting.My meaning if you reread it is slightly different to what I think Emily was saying.I may be wrong but........
Emily and forum members
I am delighted that the PDS feel that they can ask our opinion and we ought to be happy to give it. How many times do we here the cry "They never asked me for my opinion". Well this is putting us (PwP) in a very good position.
Remember everyone we are the people who have first hand information about living with Pd (carer or PwP)and if it is going to be useful then what is there to lose?
I think we should encourage any activity that will help the progress of fighting this disease. After all this should not be a "them" and "us" situation - we are all aiming for the same goal and as sufferers we must be a valuable resource to those researching PD. I think we should have a separate section on this forum so it remains prominent and a reminder that we can play our part in helping (as if we need it!).I for one would be keen to help where I can
I would be in favour of this, as long as it was in a separate forum, and only accepted input by members and no responses to posts, as many other have said. Otherwise it could get very long winded!! Then, those that wished to post a reply could do so and those that didn't could avoid it.
Assuming that I have read,and understand it correctly,I have no objection at all to this proposal.
I would have thought it could be helpful to us all, depending of course on the content.
I think this is a brilliant idea - BUT - there would need to be a separate section, perhaps called PDS Staff Enquiries, where individual topics of interest can be posted by the PDS staff member concerned and members of the Forum can post replies. Obviously PDS staff can read this Forum, as can drug companies, doctors and others connected with this blooming condition of ours, so information can be gleaned without being evident. In fact, it is easy enough for someone to join, post a question and get a bunch of answers without revealing that they are a researcher so the fact that the PDS is being open and upfront is, to my mind, a bonus!!
Thanks for letting a Rocker back in!!!!!!!
As number 6 used to say (the Prisoner) "See you around"
Poker in the Bubble
Tim, Emily and others
Please would you consider a fundraising section. I think it would be useful for us all..
I've just read this thread and I wouldn't have any objection to the PDS seeking the views of forum users but forum users don't represent the majority of PDS members. I don't think anyone else in my Branch uses the forum!
Everyone in my branch uses this forum.
because this is my branch!
well said mr Pokermid
a lot of people who use this forum are not members of anywhere else, so yes, this is a branch of the pds.
hey does this mean we have to follow the rule book though.??
Durrrgh!!!.............what rule book is that Tina?
Four legs good....Two legs bad!
We are all equal but some are more equal than others!