How to create good quality research proposals?

This is making the assumption that the underlying demand for funding by high quality proposals/teams is not there. But what concrete evidence do we have that this is true?

All research proposals are inherently risky - there is no guarantee there will be a groundbreaking result. Given a lack of understanding of the fundamentals, it seems we need a broader range of research in this field, including research that some people would consider 'risky'.

Perhaps high quality proposals are not being made because they require higher amounts of funding than would usually be granted? Perhaps scientists would rather make proposals in areas that are less controversial and thus more likely to get funded. Who wants to spend a lot of time on an ME research proposal when you're likely to be knocked back even if it is of high quality?

The answer to the question is what I have proposed before, namely we have to actually study scientists choices and behaviour. Why do scientists choose particular fields of study? Why aren't very many young scientists choosing to study ME? Why aren't sufficient high quality research proposals being made, or if they are, why are they not being funded?

We should not merely speculate about these issues, we need to study them directly.

 

Just read it . I wonder why they think these things are related to the health of the eye rather than cognitive function.

I also dont recall dry eyes being a key symptom or sight loss?

My ‘eye problems’ are directly related to cognitive function (I only get light sensitivity when I’m crashed, and concentrating on fast moving objects, blurred vision etc are things that wax and wane with concentration, pain and all the other symptoms?).

So much so I’ve had a prescription change to my glasses and then found upon retest that the prescription was too strong and had to be changed as soon as I received my new pair.

I’m not sure what the results of the study were but I suspect that variation in symptoms will make this a tricky one to prove one way or another unless the experimental,design takes this into account?

I found this

https://www2.le.ac.uk/offices/press...of-chronic-fatigue-syndrome-research-suggests

Which shows that the lead researcer works in the psychology and behavioural science department ....I’m a little suspicious that this may be a load of crap dressed up as science and they’ve Procured research funding under false pretences, but I’ll have a look and see if I can find the paper.

 

A few weeks ago I tried to contact Dr Claire Hutchinson at Leicester but she is no longer listed.

So I tried contacting the office to ask for my e-mail to be forwarded on to her but I have heard nothing yet?

 

The recent studies on vision problems are the sort of things I have been wanting for years. They actually looked at something that is a big problem for many of us, identified where things were going wrong and, most importantly, gave us a vocabulary for describing our symptoms. When we know what is going wrong we can be tested and categorised in a way that is understood by doctors. Instead of having to tell the optician "I can't see TV" I can now explain that recent studies have shown people with my disease have trouble seeing edges. Instead of being told that my strong dislike of being out in traffic is anxiety I now have backing for my own perception that it is because I can't see movement very well.

Too many of the things that do not work for us are nebulous and research to pin them down, while not leading to immediate treatments, would give us a scientific framework for ME and its symptoms that would help management in the short term, may lead to treatments in the long term and would also make it harder to dismiss everything as psychological.

 

Over the years, too many promising studies have never been replicated in large trials. For instance, the heart problems found in the NIH studies were just suddenly dropped but we could really do with knowing if they were accurate or not.

All the recent studies being done in the US give us hope, but there will be no progress unless they are looking in the right places.

It seems to be forgotten that ME was named from an EPIDEMIC and even CFS was created after the CDC was brought in because of an outbreak among many people. And the epidemics were associated with enteroviruses, yet there are no big time studies being done on that. Virology has gone way beyond anything available in the 80's but even the VP1 test was never discredited but, as with so much about ME, it just fell into oblivion.

The funding of a small study to list work that was promising but never carried forward, from low blood volume to stealth viruses could be am important first step in a new era for us.

 

Found this with regards to,the eye study. Looks like it’s charity funded and has changed hands over the years

http://www.meassociation.org.uk/wp-...Review-Visual-Impairment-in-M.E.-05.03.18.pdf

Seems like they are looking at it from a cognitive perspective, although the results don’t look stellar and I can’t really agree with some of the very tenuous conclusions in the discussion which seem wildly speculative. At least they admit that the results are not particularly good or representative.

Looks like they have some more charity funding (more going to psychology departments) to expand the study from the small sample ...seems like a strange peripheral study in the scheme of things and so far the results don’t stack up from my brief read of their promotional material. I couldn’t find any published study.

 

I had been hopeful that this line of work might have lead to some non-invasive and objective measures of some PWME issues. Ho Hum.

There always seems to be that little shrug by the medical profession of "Why bother testing when there is nothing we can give you to help"

We'll all keep looking and hoping.