We want to host an Ask Me Anything (Q... - Research Opportun...
Research Opportunities
We want to host an Ask Me Anything (Q&A) session on the community with a research specialist - would you be interested in joining?
During an "Ask Me Anything" event you will sign on to our community for one hour, asking a specialist your questions in on the official AMA thread (which will be created on the day of the event) and getting responses in real time.
I'm happy to contribute as a lived-experience AF and stroke participant, but there needs to be a better description. I am a regular participant in online discussions with universities, however, I am aware of the subject and the parameters of the discussion beforehand.
Can I suggest a subject for inclusion? The CYP2C19 enzyme metabolises clopidogrel, amongst other important commonly used medication such as selective serotonin reuptake inhibitor (SSRI) antidepressants. There are numerous variants of the enzyme that can cause the medication not to function up to ultra-rapid. About 30% of white people have one or more variants, increasing to around 60% of people who are Pakistani and Bangladeshi. Therefore, the medication may not work or require a different dosage. Apart from the real-time effect on an unknown number of the population, this can skew trial results. Yesterday, I was in an online conversation about a trial that will use a drug that is metabolised by CYP2C19, but the trial participants will not be screened for variants as the NHS does not screen for them [so how do we move forward from prescribing medication that may not work?} In September, the NHRI published a paper on the medical and cost-effectiveness of screening for variants in patients who are prescribed clopidogrel. The NHS could have more effective outcomes and save money by testing. Perhaps that needs an answer from Wes Streeting too. Happy to discuss.
John
It might be of interest to me, especially if it dealt with the side effects of drugs. You take them for one problem, which they might deal with well, but they give you others!
Agreed. Dronedarone and amiodarone gave me pulmonary toxicity and permanently scarred lungs.
Poor you! I just find my digestion has been messed up and possibly my fatigue has worsened but thankfully, brain still functioning!
Agreed. I have been severely and permanently damaged by fluoroquinolones and metronidazole, and there is nothing out there on determining who will be damaged or any actions by the medical community to reverse that damage. The usual response is "that couldn't be happening" and gaslighting the victim, especially if the victim is female.
I was absolutely floored to read that over 100,000 people are killed yearly from use of properly prescribed, properly taken FDA approved medications. I find that to be terrifying.
Already invovled in 6 other Liver research projects and another dealing with orgran transplant with the Blood and Organ Transplant service in Bristol.
If the person was a bronchiectasis specialist
I'm very interested in the fact that for many RLS is a serious lifetime problem that GPs etc simply don't know anything about RLS. However my 84 year old husband had Dementia and medical team told every one that you cannot have Dementia and RLS!! They thus withdrew his medication and he then had falls everywhere though he couldn't explain why. He was in tremendous distress but couldn't explain.
I want to know about Dementia v RLS and how to negotiate this attitude and help elderly patients.
Premature Ventricular Contractions (PVCs)! Is there a cardiologist or researcher out there who is absolutely fascinated with them? I would LOVE to speak to them and I'm sure a LOT of members would too! Why do we have them? Why do they come on suddenly? Why do they come and go? Why do some people feel them while others don't? What are the best treatments? Is any research being done to find a cure? Just some questions I can think of. I'm sure other members can think of many more.
Yes, not a problem, but will this allow for time differences? I'm in the UK, so if this is US based then probably people in the UK wouldn't be able to participate?
Yes I’m more than happy to participate in this, I have been a ICU multiple organ failure patient including AKA, Cardiac arrests and AF ICU affected. I’ve already participated in two universities studies.
I’m also aligned with Vonnegut with reference to the effects of drugs that are given to stabilise the affects, issues of others.
I completed a study when passing my oncology exams on exactly this subject, it revealed staggering outcomes, they were antithetical to the original prescribed drugs.