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Why so few new topics in Research discussion?

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johnt
Why so few new topics in Research discussion?

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

KatC Parkinson's UK

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

Jackson

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

frances

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

Drewster

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.

Drewster

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.

johnt

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

 

 

babesbrown

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!!!.......

ANNE29

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 

KatC Parkinson's UK

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

fedexlike

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

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