Remarkable researchers hunting for ‘something in the blood’ of people with ME

Simon M

Simon M

Senior Member (Voting Rights)
Good grief, a new blog.

Several small and quite different ME/CFS studies have come up with the same tantalising finding – and now a team of two very talented resarchers, one a patient, are embarking on a robust replication that could help move the whole field forward.

The finding? That if you take blood from people with ME/CFS, and add it to healthy cells grown in the lab, it changes the cells’ behaviour, while blood from healthy people does not.

Blood drop Qs wide.png
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This could be a major biological clue to what is going wrong in ME/CFS, if the results from the early studies – all small and most unpublished – hold up. Confirming the finding would be a major boost to efforts to understand the mechanism of the disease and could lead to a diagnostic test.

Enter Dr Audrey Ryback and Charlie Hillier, her partner both in life and science. Audrey gained her PhD last year on a prestigious Wellcome programme, won funding from Action from ME, and is now working with Professor Chris Ponting at Edinburgh University.
Audrey and Charlie.jpeg
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Short version:
Fluge and Mella found something in serum that changed the behaviour of healthy lab-grown muscle cells (myocytes) and published a paper. Ron Davis found something with the nanoneedle (but published little data). Several others made related findings, but all in tiny studies.

Audrey and Charlie think this is the most promising finding to follow up in the entire research field (I agree) so are doing a larger replication of the Fluge & Mella study (64 patients vs 12 in the original) using the Seahorse anlayser to look at glycolysis and mitochondrial (oxidative phophorylation) respiration. Using a stain and microsocopy, they will also look for the mitochondrial fragmentation that Prusty saw.

They will also use funky cell painting (more fluroescent dyes and microscopy, + digital profiling of the images) to see how serum might be affecting cell function. And

If they have time and funds, they will try to find the somethign in the blood, or at least narrow down the possiblities.

Oh, and they will do the main work this sumer and publish next year.

Not bad for a 2-year study.

Plus it was a huge thrill to interview the two of them. The fact they are doing a rigorous replication of a promising finding tells you they are different to many other resreachers. They are using bigger sample sizes than most. And will share data where possible.

Read the blog

https://twitter.com/user/status/1788137589402112239
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Am very glad to see the " something in the blood" factor followed up. It has been around for so long without a sustained programme being developed to identify what is happening. As far back as the 90s, Simpson was working on a different blood issue which was also never elucidated fully.

The final paragraph in Simon's blog poses the big question ‘Ring-fencing from the big funders is essential if we are to get anywhere with ME research.’ Audrey Ryback

What can we patients do about this?
Crowdfunding is the usual option for ME. I would be willing to donate for such a purpose. But Audrey is right. We need the big funders. Anyone know what we patients can do to facilitate such a step?
 
If they can show something that looks convincing, they might have a good chance of getting more funding anyway. Part of the problem with accessing larger grants seems to be that there isn't a strong enough case to be made—our evidence base is really patchy.

A small study with a standout result might be enough, or it might need replication first. Either way, if it's clear enough, it's possible it could compete pretty well via the normal funding programmes.


ETA: Pressed 'post' too soon—I meant to say that if this works out, it could be an important new finding that opens up possibilities for research into more than one illness. That could add weight to the funding case.
 
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Binkie4 said:
What can we patients do about this?
Crowdfunding is the usual option for ME. I would be willing to donate for such a purpose. But Audrey is right. We need the big funders. Anyone know what we patients can do to facilitate such a step?
Click to expand...


In general I think it’s better to fund NGO’s with portfolios of projects like OMF rather than “crowdfunding” individual projects.

Why? Because putting all your eggs in one basket is usually not a good strategy. Also project by project funding does not allow for institutional capacity building, which is needed in the long run.

Almost all major diseases have large NGOs that fund research projects—I don’t see much crowdfunding for individual breast cancer or diabetes projects.

If you want to contact a “big funder” try Vinod

kv@khoslaventures.com
media@khoslaventures.com

2128 Sand Hill Road
Menlo Park, CA 94025

(650) 376.8500
 
Thanks much @Simon M

I particularly liked the part
“And what if the original findings don’t replicate?”

This is helpful management of expectations.

I guess we have had so many studies where they looked for stuff in the blood/plasma, and to date they haven’t really found anything outstanding (like an antibody) I might be in the less optimistic camp.

 
Kitty said:
If they can show something that looks convincing, they might have a good chance of getting more funding anyway. Part of the problem with accessing larger grants seems to be that there isn't a strong enough case to be made—our evidence base is really patchy.
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Yes, some positive results would certainly help with funding. As you say, our evidence base is patchy - and the lack of replications is a factor here: there are no shortage of positive results, but a big shortage of positive results that we can believe in.

ME/CFS Skeptic said:
The original Norwegian study was published back in 2016. I wonder why the Norwegians never replicated it themselves.
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Apparently, Karl Tronstadt, who was the senior author and played a key role in the original experiment, has helped them with methodology, which suggests it's not something the Norwegians have given up on.

Jaybee00 said:
I guess we have had so many studies where they looked for stuff in the blood/plasma, and to date they haven’t really found anything outstanding (like an antibody) I might be in the less optimistic camp.
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I wasn't aware of many studies that had done this, and the nanoneedle work, for instance, was hamstrung by capacity. So I'm not sure that we have enough data to draw conclusions. Or am I missing key studies?

Audrey and Charlie not only have a lot of patients, they have a lot of plasma and serum samples for each person that would allow them to do a lot of testing (including looking for subgroups) if they do get a positive result for the main experiment. This would be either as part of the 2 year grant or, more likely, in a future study.
 
Simon M said:
Yes, some positive results would certainly help with funding. As you say, our evidence base is patchy - and the lack of replications is a factor here: there are no shortage of positive results, but a big shortage of positive results that we can believe in.

Apparently, Karl Tronstadt, who was the senior author and played a key role in the original experiment, has helped them with methodology, which suggests it's not something the Norwegians have given up on.

I wasn't aware of many studies that had done this, and the nanoneedle work, for instance, was hamstrung by capacity. So I'm not sure that we have enough data to draw conclusions. Or am I missing key studies?

Audrey and Charlie not only have a lot of patients, they have a lot of plasma and serum samples for each person that would allow them to do a lot of testing (including looking for subgroups) if they do get a positive result for the main experiment. This would be either as part of the 2 year grant or, more likely, in a future study.
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If Tronstadt helps them with methodology, is this attempt of replication an 'independent' replication? All in all, this still looks like a sound approach. I also like that the researchers have the right kind of skin in the game.
 
This is fascinating and promising-looking stuff and even I understood it! :thumbup:

What worries me about the funding is if a researcher is on a fixed-term contract and has to put in a new application to follow up a result - the time-gap might be enough to force them to take a different job. I hope the charities will speedily support this work if it comes up with a positive result.
 
Great news. :) I've already formulated a legal argument to force government directed and arm's length funding to address shall we say, disparity. I'll know the answer to whether that is feasible, and the appropriate mechanism by the end of this month.
 
Jaybee00 said:
In general I think it’s better to fund NGO’s with portfolios of projects like OMF rather than “crowdfunding” individual projects.

Why? Because putting all your eggs in one basket is usually not a good strategy. Also project by project funding does not allow for institutional capacity building, which is needed in the long run.

Almost all major diseases have large NGOs that fund research projects—I don’t see much crowdfunding for individual breast cancer or diabetes projects.

If you want to contact a “big funder” try Vinod

kv@khoslaventures.com
media@khoslaventures.com

2128 Sand Hill Road
Menlo Park, CA 94025

(650) 376.8500
Click to expand...

Yeah, I donate to the OMF too. There are individual projects that I might like better, but OMF for me was the easiest to donate to and also the easiest to get others to donate to. It's because they have several payment options and a large pool of scientists on their webpage.

Also, I know some people that go door-to-door collecting money. They always do so on behalf of a big organization. I think brand recognition is a factor here. We have the longfonds and kika in NL for example which most people know, so they'll be more inclined to donate. If I go door-to-door in my town for the project I like and you do the same for the project you like, I think it's very hard to get that same: "oh I've heard of those guys, here's 2 bucks".
 
An issue with crowdfunding for individual studies is what you do with the money if you raise a substantial amount but not enough for the study to go ahead.
It could mean having to give all the money back which means all the effort in collecting the money goes to waste.
 
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