The relationship between scientific research and the sufferer

Scientific research into a particular disease is often conducted in what seems like an abstract manner, impenetrable to the sufferer of the disease. This is partly due to the complexity of the disease and the science needed to understand it. Another important factor is in research the state of knowledge fluctuates and is rigorously debated until only much later is a consensus reached. Also, research is predicated on there being unknowns (why else research them?), meaning that science, by its very nature, currently doesn’t hold all the answers. This can be very frustrating to the sufferer who wants concrete answers to pin their hopes to.

It is also due to how the science industry works. Scientific research is expensive to conduct; not in terms of scientist’s wages (which are relatively low) but in terms of very high reagent and equipment costs. The strange payoff for the many hours in the lab and the billions of pounds spent is the prestige and glory of getting your work published in a “good” journal (i.e. well referenced by other scientists). The editors of such journals have immense power in science; their decision to publish can make or break the career of a scientist. This is because the next round of funding to pay for research is dependent on reputation, which is mainly founded on the number of “good” papers a scientist has.

In the scramble for publications and the competition for limited funding, the sufferer can become a vague presence. No doubt the intentions of the scientist are founded on advancing knowledge to alleviate suffering. Research is hard, precarious work; a scientist also has to be lucky. But the day to day business of research is engaged in generating papers to justify the next round of funding. It is an open question how compatible the intention and actual business of science is.

Sufferers want the “coal” produced by research to stoke their fires of hope while researchers are busy at the dark coalface. It is important for the two to meet. Sufferers should engage with research and hold researchers to account. Researchers should keep in mind that their work describes the suffering of real people.

dr jonny
Hello Dr jonny I agree fully with your post, we are miles apart from the researchers and unfortunately I cannot see that changing in the foreseeable future. I am currently reading the book Monkeys In The Middle by Nick Nelson which is one indication of just how far apart we are.

Please keep those interesting posts coming!!!

Hi glenchass

Thanks. I'm unsure how to close the gap...Any ideas? To be fair to Parkinson's UK they are trying. I attended an open day in York last year where some research was presented and we could meet researchers. They also have research support volunteers. Maybe more intermediates between the coal face and sufferers would help. I'm convinced that knowledge and understanding empowers the sufferer.

I'm unsure about the forum etiquette so forgive me but if you are interested in my posts (and in the interest of not clogging up the forum) I've started a blog (; some postings are familiar but some are new. I'll still post here. Feel free to have a look!

dr jonny
I think it is also important, but heart-breaking for sufferers, to accept that reaearch is funded mainly by drug manufacturers who want to produce a drug that does not cure but must ne taken for many years, at best until death!
I see no real future for example in the research into lead reducing drugs, no longer under patent and very cheap.
Drug companies have huge sums of money to pay off resesrchers, hide test results etc etc.
Look for example at the way a drug manufacture paid to cover up the research that proved helicbacter pylori caused most stomach ulcers and could be cured with cheap antibiotics in 2 weeks.
The research remained hidden for 10 years until the patent was up for the drug that managed the painful symptoms.
I feel so cynical now and hope is very blunted.
Hello GG, I do so agree with you and the book that I am reading which i named in my post tells just how that has happened over the years. It really is a must read for pwp because it highlight why we may never see a 'cure' for this disease whilst it puts more money in the pharmaceuticals pockets.

I strongly recommend Monkey's in the middle to anyone.

I agree. The economics of drug discovery mean that the suffering of individuals is turned into a numbers game; many more people have to suffer from Parkinson's before its worth the investment. It is sad that Levadopa, the main drug to treat Parkinson's, is over 40 years old. No substantially new drug treatment has been developed.

In the interest of balance, It does take pharmaceutical companies around £1,000,000,000 to get a new drug to market and there is a lag of around 10 years (a drug released today is based on the state of knowledge in 2003). Many promising compounds fail to make the grade. I believe drug companies should share the cost, and hence be able to invest in more diseases and speed up the process, by collaborating.

The best hope for quick improvements in treatment is co-opting licensed drugs used for other diseases in the treatment of Parkinson's. In the long term, understanding Parkinson's through basic research (mainly funded by the Medical Research Council (MRC), Wellcome Trust and charities) has the potential to open up new avenues of treatment.

The ultimate aim of medication in the future will be to prevent loss of dopamine producing nerve cells within the substantia nigra in individuals identified as susceptible to Parkinson’s. Failing that, treatment will attempt to replace the lost nerve cells with cells grown outside the body. The principles underlying these treatments have the potential to be used in other diseases. Therefore, work on one disease can speed up new treatments for other diseases.

dr jonny