How optimistic do you feel about curr... - Research Opportun...
Research Opportunities
How optimistic do you feel about current research and developments in the treatment and understanding of your condition?
Please select one:
I'm already engaged in six liver-related studies and projects.
Research into multiple autoimmune and the development of specialists seems to be years behind that of any other country. So fed up of treatment at symptom level rather than research as to why immune systems attack the cells in the body.
It is stunning! I was sent to a top immunologist in Vancouver BC, to find out the source of all my autoimmune conditions. He had no interest and in fact looked confused when I asked him. He only wanted to do prick tests, and tell me I didn't have allergies cause I didn't go into antiphylactic shock; only to have to back track when so many spots reacted! Another told me point blank that he is only trained to treat allergies and has no training in the source of autoimmune disease! I left very discouraged and with zero faith in medical training !
Hypothyroid here. It seems all the research is done by the patients and any the medics do do is to support their current thinking that Levothyroxine is all any of us need.
I have had epilepsy, Juvenile Myoclonic Epilepsy since I was fourteen, the medications were few, but I am now aged 67, the number of 'medications' has increased, with fancy names, but throughout my life the reactions/side effects to the medications always harmed me more than anything else, I know the brain is the most complicated organ in the body, but over fifty years and essentially not much change? Plus the attitudes/reactions to the condition still as crude and basic today😤
Varies on condition .There is a lot of research into cancer but I can't see much being done for many more illnesses . My sons father in law in the USA was ex military . He has Parkinsons and gets such attention from physio , hydrotherapy and pioneering drug options . This started swiftly from the beginning , but in UK we are on waiting lists so our conditions are more complex when we actually get seen so unless these new drugs / treatment start early on an initial diagnosis then I feel that the illness that is being treated would be hard to monitor in varied stages . I know this from my 2 operations for what you would class routine - hiatus hernia and gall bladder removal but in both cases because of the delay and wait times the 2 different surgeons commented that they weren't as straight forward for various reasons .Yesterdays TV political debate between the 2 main candidates standing for leadership in the UK didn't make me confident that there would be a swift resolution to this either .
I have done my own research into my Hashimoto’s hypothyroidism regarding diet and supplements, I have received no information from my GP other than my monthly prescription of Levothyroxine. I feel very little training is given to GPs and diet and nutrition even less . I have felt very much on my own dealing with this condition .
I’m totally with you on this. I pay to see an endo for T3 added to my Levo. He’s not much better, but I get the T3.
Could I put in for another condition I have Schwannomatosis NF3 a neurological condition, I have a personal specialist, a very, very rare medical condition [is there anybody else in UK with it?] I have to email my specialist with latest news of my condition, I have been with her since 2017, but actually had the condition since 1970. Hopefully someone somewhere will benefit from my endless ramblings I am making now?
Hello, I think this is a good question, although I feel without knowing detailed about the recent research etc its hard to answer.
However, if I were to choose I’d say somewhat passimistic as the results i’m aware of for hypothyroidism have not translated into meaningful change at patient level. Most with hypothyroidism still seem to rely on T4 only medication on the nhs, which hasn’t changed for 70 years or more (when my 82 year old mother in laws mother had it). Even basic T3 testing is not commonplace or even available at all without going privately, which isn’t affordable for everyone. And so many of us are still ill frequently with this condition.
Hi I am happy that research is being carried out but I’m sceptical because the research in the main is being carried out by the interested parties ask for the research!! This has been proven on multiple occasions with many drugs and this has not been disclosed. We need independent research to be carried out without big pharmaceutical or Government being involved.
Open and transparent plus due diligence testing before they go on the market and at the end of the process if the drug needs to be altered it has to go back through all the procedures to apply for a new drug. Unlike what happens in the USA where because it has the same name it’s rubber stamped to the detriment of the public. Also before the drug is prescribed to the patient the prescriber has to inform the patient of the affects or effects negative against positive and in the UK they need to be told about the Yellow card scheme.
Informed decision of the patient
Your ideas can't be argued with but because drugs take millions of launch plus the amount of red tape then I can't see smaller , maybe better more suitable companies ever being able to afford to do this in the UK . NHS wants cheaper alternatives and recent TV news coverage reported shortages of some proven established drugs leaving patients having to travel for collection if they were lucky . I see the way forward for the current NHS crisis being cheaper alternatives, not always the best - so how are new drugs going to be developed and introduced for them to be financially viable ? The economy in the UK has to grow and NHS waiting lists need to be addressed before I can see any backing from any source being able to flourish as even a private company from any country would need to source suitable patients which takes time / money and intervention to process . I would be worried by the unknown wonder drugs which flood onto the internet with claims of cures and faux AI which are increasingly feeding the desperation of those that are ill and are searching for alternatives as they wait for treatment with worsening conditions.
I can't get any answers to my health issues just get sent home from hospital with no diagnosis. It's make me feel like a fake .
Please don’t blame yourself . Persistence paid off eventually for me as I was on endless waiting list for treatment but I phoned the hospital every couple of days rarely spoke to same person requesting any cancellations or new appointments. It is your body and you that has to deal with any issues that arise from delays. You know you better than anyone. Carry on and don’t take no for an answer. Diary your symptoms and what you eat and drink as this goes a long way to helping. I would try and see somebody else as it is amazing when you do get the right person
I’ve been visiting Professor Gourley in Edinburgh who let us tour his research labs as a thank you for fundraising to find effective treatments for Low Grade Serous ovarian cancer. It was very hopeful.
I WANT to post something positive here, but frankly I'm not seeing any signs here in the UK of anything positive on the horizon for mental health, let alone depression. The NHS is in such dire straits that they can't even provide a dentist let alone help with a broken heart/soul, or whatever else ma be causing your depression. I read about things like psychedelics coming into use and they seem to offer the most hope for improvement for us depressed folks, but the UK hasn't even legalised marijuana yet, so what hope is there for psychedelics? So no, much as I want to be optimistic, I'm just not.
Sorry, I just posted assuming it was depression we were discussing, since Anna had contacted us. But I see it's just health conditions in general. In which case, I feel exactly the same! I have several (many, truthfully) health conditions and most of them are on the rare side, and I see ZERO help for them. To give just one example, I have neuroendocrine cancer. Because it is rarer(er) they do no research on it. I have a tumour sitting there, which they decided not to operate on, but there is NO other treatment for it, to shrink it, for example. You'd think there would be something. But once my surgeon decided she wasn't operating, they literally stopped contacting me. To me, that is an unacceptable level of care. None of my other conditions have any help either, it's all meds, meds, meds, but only to control the symptoms. For some of them I can't even get a basic consultation because there are massive waiting lists in the UK, so no, the picture is very bleak indeed. And I can't imagine I am the only person in this position.
I am in remission after after completion of BR therapy almost more than one and half years now. My CBC is normal. There is no research in done on CLL in Ethiopia. I am ver much concerned about relapse of my case. For this reason i am contemplating to put myself on tradtional medicine from medicinal plants. How can i take these drugs by conducting lab tests on its side effects on my liver and other organs as i go along with this traditional medicine as may be recommended by local healer. I have some hope in that.I think i can no longer tolerate any chemotherapy if my CLL relapses. I cant see any relevance of your current post to my case.
My issues are not in themselves life threatening : RLS and Tracheomalacia, but as most of the doctors I meet don't even know what these conditions are, never mind being able to hold a conversation about their effect on their patients, I am convinced that some of the most important work concerning these problems is in the URGENT education of all doctors and nurses. Their ignorance leads to misdiagnosis, mistreatment, and often negligence. THEN key research becomes REALLY significant in benefitting patients.
Research is imperative and so meaningful but if the basics of relatively common medical issues aren't even effectively communicated to medical practitioners, what use is it?
Lupus is difficult to diagnose but can impact many organs in the body from skin to joints, brain to kidneys - and be associated with thyroid, mental health, Sorgrens etc. There seems to be little understanding of lupus itself, so research lags behind other better known conditions
while I feel optimistic about treatments for the commoner types of Ovarian Cancer, rarer types (eg my type, mucinous) are because of their rarity having virtually zero studies done on new treatments. Surely specialists should now have the tech to be able to work together with their counterparts in other countries to run cross border studies in order to obtain the required sample sizes? Otherwise life expectancy for someone like me is going to be unchanged while others have significant positive changes!
Maybe the obvious isn’t obvious to them ? It is amazing how healthcare and research varies from country to country . They are aiming to treat all people but they seemingly work in isolation. Wonder if because of funding they have to be careful about what they are doing and collaboration although it doesn’t help those who need the help now .