If you have a better way we are all ears.
I feel that I do, otherwise I would not try.
If you have a better way we are all ears.
Dear @MErmaid,
I am sorry if you feel strongly that things are wrong. But I assure you I am trying to give all the support I can. Part of that is trying to get people to clarify their ideas so that we do not blunder into things and just put people off.
There is no 'research system'.
I spoke to a doctor not long ago when a family member was in hospital. He told me the majority of the cash the govt gives to hospitals is for cancer treatment, and cancer research.
And many advances have been made.
We all know the AIDS story.
The whole world got together on this too, as with cancer.
This is not the case with ME, and yet, the illness is often really, a living death for the patient.
There is no urgency, for a host of reasons: it's seen as just fatigue, or aches and pains, or whatever else, and not seen for what Brea showed it to be, with many patients even worse than she is.
That's my humble view: no damn urgency seen in the situation.
I know scores of young people bedridden, and suffering so miserably, filling out requests for medically assisted dying as a result
Pfizer announcement on their decision to exit neuroscience research.
https://www.pfizer.com/news/feature...our_neuroscience_r_d_decision?linkId=46901181
I know you re keen to get pharma involved, but remember pharma is a business.
If they think they can make money they will be all over it in an instant.
If there is too much risk they will stay away.
A lot of the big pharma companies don't do much new research now because there is too much risk, too many drugs fail at phase II or phase III trials after years and millions of dollars of work.
So it is up to the startups and incubator companies to to the initial research.
Then if the drug shows promise big pharma step in and buy the startup.
Big pharma have licensing and sales expertise to bring the drug to the market. So it suits both entities.
The best bet in the near term is actually a small startup, which is most likely to come from a university. In all likelihood, a university that has been funded by government or patients.
I live and learn. I'd not realised the funding situation was so skewed.
As long as medicine is a business there will be no solution to many health problems, especially diseases like ME which are very complicated and still unknown.
Business need to be sustainable otherwise it is not business. I was trying to tell this more than anything else.
why is a startup more able to absorb risk than a large company?
I find it hard to believe that the pharma is interested in finding a medicine that will cure a disease like ME. They are much better off selling many painkillers, digestive aids, tranquillizers, mood stabilizers etc. And that's whats happening at the moment, they are happy with it. It's good business. They don't want an umbrella cure which requires a diagnosis system. This is not happening anyway. I don't think it's a coincident that the establishment's state funded research is psycho-bubble oriented.
We have been at crossroads for decades. i welcome any attempts that will position us closer to access to biomarekrs and treatments.
The suggested strategies, if there are any, may have worked decades ago for a certain field, but there is no warranty that it will work for our stigmatized, neglected, underfunded disease. Taking a wait and see approach, we have done this for decades.
Each year I celebrate my sick-versary is worse than the last.
So what are we to do?
That's not correct.Trademarks and copyright for things like Mickey Mouse were extended to 99 years, but inventions that actually do something are patented only for 12 (or 13)
What are you going to ask them to do, action for the sake of action won't get a cure, diseases are treated by figuring out whats causing/sustaining them and/or discovering a way to affect the disease mechanism.Honestly, if I have to drive this agenda single handed, then I will. It’s really up to Pharma to listen or ignore me.
This is my concern as well, burning our possible bridges is a bad idea.I also think it can only do harm if the pharmaceutical industry is bombarded with poorly thought out theories or shaky evidence
I feel that I do, otherwise I would not try.
Believe me, I understand your frustration and sometimes just taking action makes us feel better doing something feels a lot more productive then doing nothing.This is something I need to pursue now, because I wasted the last 2+years not doing enough.
What are you going to ask them to do, action for the sake of action won't get a cure, diseases are treated by figuring out whats causing/sustaining them and/or discovering a way to affect the disease mechanism.
Our civilization is predicated on science, its nowhere near perfect as all of us can very well attest to but the human body is an organic biochemical mechanism and works based on interactions with the environment (and chemistry/biochemistry). In order to change things to our desired goal we must either define the problem and work on a solution or luck out and have a solution fall out of the sky. Sometimes that does happen, Rituximab was discovered by coincidence and may work for a subset, and we can increase our odds by throwing things at a problem (Dr Davis's drug assay for example) but typically you solve a problem by defining its cause. Even the drug assay may fail because its used on the wrong target, only testing it on blood may be the wrong approach, again a disease mechanism makes itself needed, if its caused by say an immune malfunction then drugging a patients blood under a microscope is missing the more likely target.
Its nice to think we can will a cure into existence or bring it about by raw determination but it just does not work that way. We need will or determination to get where we want to go but it needs to be applied in the correct way
This is my concern as well, burning our possible bridges is a bad idea.
Believe me, I understand your frustration and sometimes just taking action makes us feel better doing something feels a lot more productive then doing nothing.
You seem to be on a mission here and i'm not going to say you should not be driven, what i am saying is you need to figure out how to make your goal happen, not just charge at something because you feel you have to do something forceful
I am getting the impression you have little confidence in my ability to pull this off?
I'm asking how do you plan to discover a cure?