Why so few new topics in Research discussion?


#1

By my calculation this sub-forum, Research discussion, has had only 7 new  topics (threads) started so far this year.

Clearly I should take some responsibility for this. If I had posted on everything that interested me, there would be many more new topics by now. But, I become disheartened when there are so few people posting in this area.

What reasons put others off?

John


#2

Hi John, 

Thanks for posting, you pose a really good question. It'd be great to hear what members are reading or what others think about current research. 

If anyone would like to catch up with Parkinson's UK's research news they can read more about that here 

Our current projects can be found here too. 

Thanks 

Kat


#3

Hi,
I have to admit that this has always been a section of the forum that I only read on a very occasional basis (today as it happens) though I do read the research news on the website regularly. It's not that I don't support  the search for improved treatments and a cure, I really do and I would love to think that a cure will be available for future generations, but I increasingly find that on a personal level, I am more concerned with issues related to daily living now - driving, work,  mortgage, money, bills, relationships.  . . than I am with the possibility of new/alternative treatments in years. I think dealing with things right now just takes up all my time and energy. 
J


#4

I agree. I am really interested, but it all feels a bit remote and it seems clear any sort of real breakthrough is a long way off.

F


#5

You raise a very good point John and with the benefit of hindsight it's really disappointing to see so few new articles.

I think we're potentially moving into a dark and dangerous era. There's simply no money in research for the drug companies, so little chance of success, such regulatory barriers, such long lead times and such deep pockets required that many are only interested in picking up on projects much later than they historically would.

We desperately need more researchers in universities across the globe to hit upon promising therapeutics that the companies will then step in and run with them, but these researchers also need funding (less, as they are not driven by commercial success in the main) but funding which is increasingly scarce.

Scary - or potentially scary.


#6

In the "driven by profit" world we live in, where it can (easily) cost £250M to fund clinical trials, is it any wonder that for a UK patient community of less than 150,000, many of whom are "older than average", there seems to have been so little progress?

Charity cannot afford to fund the gap, and for big Pharma, there are much better cost benefit cases out there. Our economical metrics simply don't stack up.


#7

If the "system" is not working for us, let's change it so that it does work for us. There's roughly 130,000 people in the UK with Parkinson's, many of them have the skills needed to do research, run trials and develop therapies. I suspect that, if they were organised, we could get a thousand new researchers in the UK and, perhaps, 100,000 worldwide.

John

 

 


#8
Not sure if this is the right forum to post this so apologies if its not.... This week we have seen 2 things in the news ..Emma on The Big Fix and the gadget to help her write and yesterday the news was the new DBS?surgery without invasive brain surgery... Whilst I know these things are totally amazing I feel that the message being given to people is that tremors are the main worry of PD people? I know that tremors are only a part of PD and I think the media and scientists are not really understanding what real life is like for PD folk? My friends have been constantly texting telling us about these miracle cures !! And saying PD must be cured now? People have no understanding of PD really.... We are losing our very valuable PD nurse at Christmas with no one to replace her...we have been given a list of phone numbers or web pages to contact if we need support. Or contact our GP...he admitted he knows very little about PD himself? This is the real life living with PD daily..being left to get on with it daily!! While I realise research is important, the hope of many people being given stuff we see on TV is very slim....I am sure that is why there is so much ignorance around PD by everyday people!!!.......

#9

Hi Babesbrown,

I totally  agree with your remarks.I do not have a tremor and people say but you do not have  a tremor you can't have pd and others say well it's awful the tremors that p d people have they are much worse than you.

I was once told (not sure if this is correct)that the disease progresses faster if you don't have a tremor.

I live in Scotland and i have good support.We can contact our pd nurse at any time and it's not a neurologist i am under its a movement disorder specialist although most people in Scotland are under neurologists.

Roll on the day when a cure is found!!    Anne 


#10

Hi Babesbrown, 

I'm really sorry to hear that you are losing your nurse, that is extremely unfortunate. Please remember that you can talk to a Parkinson's nurse on our helpline for free, I know it cannot replace the valuable service you have now but we will help you in any way we can. 

We can relate to what you've said about tremor, we know there are many symptoms and that people experience them differently, we recently released a video on freezing for example. We will continue to raise awareness of the complexities and different experiences of people with Parkinson's. Please get in touch with us if you need to talk. 

Kat


#11

i   I have the expensive Ddopa  and it  has helped me  a lot, but no research into refining this system to make it  less bulky, Drewster is correct when  money is needed very little  is given parkies  direction,  18billion for   the  big  carriers  no  prob but pd  no  sir,,  we    need  more  of  the inferior lightning 2 ( should be 3s) for  the  flat tops ??

                                                                 FED


#12

Well said Babesbrown.

Maybe PUK should be looking into things that improve daily life and living with the condition, rather than a cure, because I have heard all this for so many years I am almost at the point of cancelling my monthly direct debit to PUK because all the money that is sent from branches and individuals for research is getting us nowhere nearer a cure after decades.

With respect, PUK Admin on here always avoid the main issue and take up the side issue, with a referral to the helpline.

 


#13

 

            Well I agree  with  all  comments  here  but  the  money needed  for  research is  a  major  obstacle why are  humans  so  stupid , spending trillions on killing  machines  when  so  many suffer   I have left  my  brain  to  science  though I only have 10 brain cells  now at 66  so  by the   time Im  76 ill be left  with  1 or 2,  anyway  we  live  brains  to  work  out  ways of  defeating  parky ,  also  the  odds  of winning  the  lotto   are  128000000 to 1,so  imagine  the  scenario  Im   given  a  cheque  for  £124 000 000 which I will  give £100 000 000   to  Parkinsons  research  and  the  news  comes  through  that  a   cure  has  been  found as  a  result,,  the  shock  stops  my  heart,,,good  old  sods  law  eh

                                                              FED

                              


#14

Oh Fed

The answer is simple!

Spending trillions on killing machines...massive profits for arms manufacturers.

No cure for Parkinsons....trillions spent on Parkinsons meds....massive profits for drug companies.

No wars...no profits.

Cure for Parkinsons.....no profits....and no huge CEO salary for head of PDUK.

Greed rules...

How I wish it wasn't so.

Love

GG

 


#15

 

                Nnng,  I am a thicko at  times, I never thought  of  it like  that but  you  are  absolutely correct  so we are  doomed   then, should  I go  ahead  with  this painfull  toth  extraction tooth  tooth  extraction or  let  some  nutter ( rhymes  with  bump) extract my  life  as  he annoys   the  NKs Chinese and Russkie into    a showdown,  I would  rather miss the  dentistry  , so  its  armageddon then,,  decisions decisions, at  least  it  wiill  cure evryones parky.

                                                                   Fatalistic FED

 


#16

Hi everyone,

I'll feedback your thoughts and feelings on this matter to the relevant people in the organisation. If you'd like to discuss the matter of cancelling direct debits and your reasons with someone please let me know, I'll put you in touch. 

It must be frustrating for some of you, I can see it. But I'm a moderator of these forums. I'm here to support you or answer your questions  when I can. When I cannot and I feel you need to talk to either a Parkinson's nurse or an adviser, I'll remind you that this service is there. That is my job and I try to do it to the best of my ability. I understand that it is not always enough. We want what is best for the community. 

Please let me know if you'd like to talk to someone about what's been raised here. 

Kat

 

 

 

 


#17

Hello Kat

                              Thank you  for  your  kind  concern , I know some of my posts  are a bit ranty  ,is that a worn  ,,, at times  silly at  others  and  scared  at some  developements  and then  of  course  there  silly  which I like,  I tend  to be  silly in the   morning  from 7 30  until  1 00 1  30 ish then I begin to  slide back slowly at first  and no  noticible by  others but inside my head a small war is  underway  and  its  no quarter given, I press the boost   on  Ddopa and that halts pd  in its  tracks (for a while)  but after  1hr  or  so it  starts  again and by now im tired, and the fights  gone  out  of  me  the  only  thing  is  distraction,, ie  this   toplap,  or  constructive  arguments  but eventually  its  bedtime,  then  a new  war  starts  in my  dreams  which  are so  gutwrenchingly awful  I cant even write abut them here prostate and viscous back  pain and NPS  round off  the  average day  for  me,  as I said  thankyou  for  your  kindness  in a average day for me  I find kind is blind in m mind,   ,,,,a little  silly  still  there ??

                                                  Kind Regards  FED AND GREAT  NEW  YEAR to  you  kind  young  person