Coeliac Journey Through Covid-19 – Medical Research
Medical Research
I first got involved as a lab-rat in medical research, when I had my second endoscopy to check for coeliac disease at Addenbrooke’s Hospital in 1997. Rebecca Fitzgerald took a sample of fluid from my gut for her Barrett’s oesophagus research.
After my wife died, I asked my contact in Alumni Relations at Liverpool University, if they did widowhood research.
They are one of the few universities that do and I did several interviews for PhD students in the unit, which is in the Psychology Department. It was very much a positive experience and certainly helped with my grieving.
In some ways the most enjoyable piece of research I have been involved in, was at the University of East London, where they were using computers to measure the balance of those recovering from strokes.
My GP also suggested that I get involved in drug tests at Queen Mary University. The tests were abandoned as the drug didn’t have any good or bad effects, but now I’m one of the William Harvey Centre’s lab-rats.
I also help to sponsor pancreatic cancer research at Liverpool University in memory of my son.
In There’s More To Liverpool Than Football And The Beatles!, I detail some research, that I sponsored in a small way.
I may be tempted to do the fund-raising trip again.
I always advise people to get involved in medical or psychological research, as I have found it such a beneficial experience.
One thing that is needed, is an on-line database of all research projects that are looking for volunteers.
Remember, that much medical and psychological research is about as dangerous as meeting someone in a GP’s surgery for a chat or perhaps in a cafe and having a coffee.
The Anonymous Widower 
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I agree – research is vital and I will likely be offered a place on a trial when my CLL is ready for treatment.
Many may years ago I was chatting to a lady who I didnt know very well, we were in the same group for a hobby we both had. Her child had been diagnosed with leukaemia as a youngish baby, just a few months old. Obviously she and her husband were devastated, and 40+ years ago there wasn’t much treatment. Their daughter was expected to die within a week or so – there was a mother child, similar stage, same life expectancy, in the same little room. The doctors asked the parents if they would be willing to allow their terminally ill daughters to be given a dose of a particular drug, it would shorten or lengthen their life, and they would feel no pain of ill effects, but the results from the blood tests would help them to develop the drugs to stop other families going through what they were going through. This lady and her husband agreed to their daughter receiving it, the other couple refused. The other baby died a couple of days later. The lady showed me a photo of their own daughter, now in her 30s with 2 children of her own. And the drug she had been given will have saved many more lives I am sure.
My family know that if my own leukaemia dowrsens or destabilising, I will be happy to go on a trial drug.
Comment by nosnikrapzil | April 29, 2023 |
I don’t know the figure, but my cardiologist friend, who reads this blog might know, but a lot of drug tests aren’t about new drugs, but about things like combinations of old drugs and new methods of delivery, where there must be less risk.
Comment by AnonW | April 29, 2023 |
Many of the blood cancer drugs coming in human trial are immunotherapy – that is what I will most likely be treated with. And the trials are variations of the same drug. Snag is cost. The current one being used a lot and out of trial is Venetoclax and something which starts with O and ends in mab – Obintusimab or something like that – referred to and V&O. Nice have recently approved this for MHS patients for whom it is suitable. Being a chronic cancer, rather than acute, they aren’t in hurry to treat, but I am getting a lot of infections and I hope I will be able to have V&O or something soon.
Comment by nosnikrapzil | April 29, 2023
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