Thoughts on the BBC programme for GDNF?


#21

I actually thought the programme was well done and was effective at raising awareness of the ups and downs that we Parkies go through. The outcome was easy to find out ahead of the second episode with a quick Internet search.

There have been many trials over recent years but they have nearly all failed. My humble view is that the reason for this is that there are different types of PD that respond to different treatments. This seems to be the case with GDNF: some people showed significant improvement, others didn’t. Overall the average improvement across all the participants did not pass the theshold, but if the treatment had been better targeted, I suspect it would have done… so hopefully this is not the end of the GDNF story…


#22

Why didn’t they, at the end of the programme ask for donations for Parkinson’s ??


#23

well I for one will avoid Pfizer drugs where ever possible, I mean £3m is nothing to these guys. Its about time the government got a grip and went all out to find a cure. They can send money all over the world and find money to fight wars and write off bad loans and bail out the banks to the tune of billions!. it makes me sick! They need to get their priority’s in order . Finding a cure would be a great investment.


#24

Yes! Completely agree. It baffles me. If it was one of the Stand Up to Cancer programmes, they would be asking for donations.


#25

It’s so true Roberto. If people understood how distressing a disease Parkinsons can be for all involved, then the money would be found. It brings me to tears regularly when I think about how brave my mum has to be on a daily basis, having had the disease for almost 16 years now. The weight of what my mum is having to carry now is just too much for a person to bear.

I know a cure will be found. And it just makes me sad when I know this research project first began in 2001 before my mum even realised she had it.

I have voiced my concerns that I raised in my initial post to the BBC, and to Parkinsons organisation CEO and to Pfizer. It’s something I felt very strongly about. Let’s hope some breakthrough and funding comes soon.


#26

it makes my blood boil when I think of what those patients went through to test this drug and then just thrown to the wolves. It shows where their loyalties lie. It was never about finding cure but about extending the life of the patient so they can squeeze more money out of the NHS. It’s a disgrace. surely the government could deflect a few million from the lottery to push for a cure, or why can’t we choose which charity our bit goes to. it makes you wonder if they really want to cure it at all. I mean £3M IS PEANUTS.


#27

I too am disgusted how Parkinson sufferers hopes were raised only to be let down so, as I think, coldly.

All my PD friends feel the same. One lady did say she would have been terrified to watch the programs was it not for the Parkinson Gym Class giving her strength not only physically but mentally. Which is thanks to our PD Physio.

I agree with everything Roberto says.


#28

Hi @GentechE1,

I’m truly sorry you feel this way, I can assure the documentary wasn’t a fundraising documentary for Parkinson’s UK.

Since the clinical trials of GDNF came to an end in February 2017 the research team have worked tirelessly to analyse and understand the results so that they can be shared with the wider Parkinson’s community.

This has taken longer than expected partly because of the sheer volume and complexity of the data which took time to understand, but also because it is more challenging to publish ‘negative’ findings so this has added to the delays.

I hope this clarifies some of your concerns.

Best wishes,
Reah


#29

With ref. to the GDNF trial outcome considered to have failed, one thing wasn’t mentioned. I am referring to the surgically installed brain implants for the trial participants. Have they been left in, or in the process of being removed?


#30

I was one of the participants in the GDNF trial and feel i must defend the documentary, what you saw was exactly what happened all the ups and downs, celebration and disappointment we may not like the end results but remember this is research, we do something , we learn from it and we move on wards towards the cure.
The results are not the failure you think it is, we know the delivery system works, we know that infusions of GDNF are safe , we have exciting PET scan results. We are several steps closer to a cure and i personally think that GDNF is the way forward, just look around at all the participants who have come forward to tell of their experiences and improvements.
When carrying out research you hope for the best but must except some knock backs, we are learning as we go and the documentary showed this. We would all like the fairy tale ending but this is reality and some times reality is disappointing or upsetting.


#31

You make valid points and I doubt many would disagree. From what I have been reading of the comments my interpretation it is the way the programme presented the information rather than the outcome itself which has caused so much anger and distress. I did feel that there was a strong inference within the first programme that a positive outcome was anticipated and the stunned silence that followed the announcement would seem to support this view. If this is so I can understand how so many feel they had their hopes raised and then cruelly dashed; to then have the drugs company withdraw, was the final nail in the coffin.


#32

I’m afraid I don’t agree that Parkinson’s UK didn’t keep us informed about the GDNF trial. They have written about it in their research roundup. They also told us about Pfizer pulling out of Parkinson’s research. Also there was no need to wait for the second part of the documentary to be aired to see what the final outcome of the trial was as Parkinson’s UK gave us a link to be able to read the results of the study before hand.
Like my fellow pd sufferers I was depressed to hear that the research would not continue due to lack of funding. I think Parkinson’s UK really should have used the opportunity to ask for donations at the end of the programme. It is probably still not too late to have a fund raising campaign while the programme is still fresh in people’s mind.


#33

I have no problem with your disagreeing at all but I think I perhaps didn’t make my point very clear. It was simply a strong impression that I got from reading the comments and watching the programmes. You are clearly well informed about the trial and that’s fine. I would also acknowledge that Parkinson’s UK do a great job in trying to keep people informed and to do so in a plain English way. Not everybody would have done the reading that you have done, I know from my own work experience that for a variety of reasons some are put off reading information of that nature and that some would therefore have been expressing a reaction based only on the two programmes. Taken as a ‘stand alone reaction’ I think my comments will strike a chord, indeed pretty much reflect my own based on the two programmes alone. I am well aware that this is a simplistic point of view. I know because of my background these things are hugely complex and that the headlines are rarely the full story. I also personally believe that the honesty of these programmes has to be beneficial to those of us with Parkinson’s and other neurological conditions. Equally though, these programmes have clearly caused many people much upset and anger for whatever reason and that does raise questions I think, about the way the programmes were presented and which have led to such distressing comments being made. It may all have been unintentional but nevertheless more than a few PWP have been caused a great deal of distress and that, in my opinion, is not right.


#34

I agree with Tot the stunned silence did capture the moment when it was realised that there would not be a positive outcome particularly when as most participants had improved in one way or the other and therefore expected a successful outcome.
The documentary accurately showed what actually happened, the upbeat feeling in the trial was shattered by the results and when Pfizer pulled out people were devastated, all the documentary did was show it as it was.
The purpose of the documentary was to rise awareness of Parkinson’s and the trial which i think you will agree it did. By showing the ‘warts and all’ version the viewing public had a taste of some of the emotions we all experienced, when we started we did not know how things would develop and the documentary title did have a question mark at the end.
Some people have asked why fund raising wasn’t highlighted, if you are interested one of the participants is actively trying to raise money to help kick start a stage 3 trial,please follow the link and give generously.


#35

yes i thought the program was a bit of a disappointment in the end .but iot just goes to show the reality of our position YES there may be a cure for PD and god hopes a cure for a neurological conditions we just aint there yet its going to take a lot more research and money we(this generation ) of suffers are just going to realize that there may not be an answer in our time.good luck all


#36

this is exactly what I am getting at, for Pfizer to pull out at this stage is crazy, they could have funded further research even if was just to wash out the placebo factor. It’s the nearest thing we have had to cure, it deserves a better chance!


#37

Thank you everyone for your considered thoughts. It is really great to hear from someone who was actually in the trial and to get all the different perspectives.

I’m also happy to hear that Darren has a fundraising page. I haven’t heard back from the BBC on my complaint. As people have said- it really wasn’t the content or the programme I was angry about- just the way it was split into two parts with the misleading title and treated like a thriller- giving false hope and unfairly dragging out the outcome. I guess in these situations, it always depends on what your personal situation/ viewpoint is as to how you will be affected by these things. For me personally, after watching the first programme, my mum wanted the surgery to be able to play with her x2 grandchildren aged under 3. To then wait a week to find out it wasn’t successful and that ‘the Miracle’ cure wasn’t actually the case- felt cruel.

I really would like the BBC to apologise for the way they approached the broadcasting of the programme- not the programme itself- just the way it was positioned. I at least think they could apologise and begin the donations to Parkinsons organisation with a considerable sum.


#38

Reading the comments… gobsmacked by some
I was in the documentary, one of the first six thru as part of the initial safety aspect
I went into this trial altruistically believing it was for the greater good of us all
I still believe that
The trial was not a fail
We proved that we can deliver drugs past blood brain barrier
We proved the delivery system was safe
We proved that Gdnf created Neuron regrowth
And much more
We made medical history
It was a trial- a learning curve
Du not realise how far we ve come???
Honest to God I can not believe some of the pointless slagging off!
Invaluable data captured
Much more than what you saw
And has raised the awareness of Pd hugely in the uk and will do worldwide-
To slate it is sadly missing all the giant steps made
Yes it was distressing and hard hitting / that’s the reality it’s not cinderfeckingrella
The people involved - patients, medical team and film makers gave more than you could ever know to help us
Stop and think before criticising
Seriously


#39

It sounds like a couple of steps forward


#40

Are you serious?