Dr Karl Morten - UK researcher based at Oxford University

I don't mean generally, I mean would physicians accept this as actual evidence? This method and what they are looking at. Or just pooh-pooh it as usual? Doesn't matter if it's right and accurate but no one cares.

Comparing to the nanoneedle, it's a unique thing, not a standard. And it's not clear what it's showing, why impedance should matter is not clear and so it was dismissed. Or what it relates to about the disease process and, apparently this is critical, unique and differentiated. Even getting patients with other diseases to compare results is very hard, healthcare systems don't cooperate with this.

Basically it's only worth going further if physicians will find it valid. It's not about what's true, it's what the profession is willing to accept as true, to their standard, and what's in the textbooks.

 

It is pretty hard to find where to contribute your money though. There are a good number of different organizations all doing different things. And then there are individual projects or researchers also vying for donations. I've got some money to send and I could probably get some family members to donate, but I'd have to make a solid case for where the money was going to.

I was talking about a lack of funding with my brother a couple years back and he said he'd happily donate something monthly to further the cause, but I couldn't work out at the time where he should send it to. That's possibly a couple hundred bucks that could've gone to research. That's not on the charities though, but we as pwME have an interest but precious little capacity to work out who should send what where. If I can't work it out for myself it then becomes terribly difficult to get others to contribute.

 

Touche.

 

https://twitter.com/user/status/1630286497743077376

 

https://twitter.com/user/status/1637875246161076231


https://twitter.com/user/status/1637917611169030144

 

Discussion thread here, Preprint: Developing a blood cell-based diagnostic test for ME/CFS using peripheral blood mononuclear cells 2023 Xu et al

 

#Raspberries4MECFS Social Challenge to support the work of Dr. Alain Moreau's RAman SPectroscopy BiomarkER-Based DiscoverY (RASPBERRY) & Dr Morten
https://www.s4me.info/threads/raspb...er-based-discovery-raspberry-dr-morten.32698/

 

I have added some tweets to that thread. I don't agree that we need hypothesis-driven proposals (quite the opposite—we have too many dispararte hypotheses in ME/CFS research, IMO). I also would like to know how many proposals the Morten group have submitted to MRC.

 

I agree we have quite enough hypotheses, but I wonder if he means (a) we need to test some of them properly, and/or (b) hypothesis-based work is what gets funded, so to be successful we need to design our studies with that in mind.

 

I think he's saying (b), but I don't agree that's what we need.

 

I think Ron Davis said something similar a few years ago in the context of his research applications being turned down. He said that the NIH was looking for hypothesis driven research to fund. Ron's argument was, if I remember correctly, that research begins with observation not hypotheses.

 

I remember a long time ago (maybe 15 years) Nancy Klimas saying the NIH didn't like fishing exercises (i.e. you didn't know what you were looking for). DecodeME is an example of one such project.

 

Within British academia there is a Popper inspired assumption that science should only be hypothesis testing, so that any thing aiming at describing is somehow not science. I don’t know if this is relevant to the discussion of research funding but it does mean that in the UK at least the preliminary natural history stage can be undervalued.

 

How do they get any research of the ground then? I might be sounding very ignorant, but if you don't look for clues how are you even starting to put the puzzle together for many diseases?

 

One way would be from small, pilot studies (which would often be funded from the non-profit sector, or possibly with in-house funding if some is available).

 

Normally that's what universities are for. And cheap graduate students. Especially cheap graduate students. They usually do that early research, then continue it for the rest of their academic career.

The whole system fails when dealing with a subject so taboo that no one can study it this way. You'd almost think it's built to fail, it's genuinely hard to accidentally produce such a dysfunctional system. But this is basically a 3-step process where the first step is forbidden if it goes against church doctrine fashionable beliefs. If it's by accident, it's still massive incompetence.