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Simon McGrath blogs: Mark Davis finds the strongest evidence yet for ME/CFS immune activation..

Jonathan Edwards

"Gibberish"
Messages
5,256
It's heartening to me that Jonathan mentions the UK biobank!

If it has not been flagged up before it is worth noting that the ME Biobank has the second largest collection of samples within the UCL Biobank facility. The largest is a general Biobank on an NIHR grant. The ME Biobank is unusual in being NIH funded. But what is clear is that this is no tin pot collection to be gazumped by other people who feel they are more of the in crowd. Our ME Biobank is a seriously impressive resource and we desperately need researchers to tap into it. This is exactly the situation where it should be useful. Someone suggests an important finding and what do you know we have 200 samples sitting waiting ready to confirm it, all properly documented with controls - with the samples having been gathered for reasons completely unrelated to the specific question. The latter is crucial because it makes it impossible for there to be selection bias on samples.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
If it has not been flagged up before it is worth noting that the ME Biobank has the second largest collection of samples within the UCL Biobank facility. The largest is a general Biobank on an NIHR grant. The ME Biobank is unusual in being NIH funded. But what is clear is that this is no tin pot collection to be gazumped by other people who feel they are more of the in crowd. Our ME Biobank is a seriously impressive resource and we desperately need researchers to tap into it. This is exactly the situation where it should be useful. Someone suggests an important finding and what do you know we have 200 samples sitting waiting ready to confirm it, all properly documented with controls - with the samples having been gathered for reasons completely unrelated to the specific question. The latter is crucial because it makes it impossible for there to be selection bias on samples.

What would be needed to bring it into play now to attempt to replicate/extend the Mark Davis work?
 

aimossy

Senior Member
Messages
1,106
@Jonathan Edwards I always follow Jo Cambridge's talks on their work with B cells at UCL because their work is obviously crucial and importantly working with/alongside Fluge and Mella. I can't remember where they access their cohorts for study that aren't directly with the Norwegian team. Are they accessing some cohort for studies through the biobank too?
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
We need a UK research group with expertise in CD8 clonality to take an interest in ME, and some grant funding. CD8 clonality should be a fairly popular field these days but I don't know of anyone immediately relevant.

Could a crowdfund help, given that getting MRC or funding from other non-ME organisations is likely to be slow/impossible? Or a call for researchers from one of our charities, who might be willing to front the money from their existing funds? Or does this sort of thing cost millions?

I think it's for patients and our allies to try to move things along any promising line as quickly as we can.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Could a crowdfund help, given that getting MRC or funding from other non-ME organisations is likely to be slow/impossible? Or a call for researchers from one of our charities, who might be willing to front the money from their existing funds? Or does this sort of thing cost millions?

I think it's for patients and our allies to try to move things along any promising line as quickly as we can.

One needs to have the right T cell people interested. Then they think about what funding would work for them. There is little point trying to raise money in advance of that.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
One needs to have the right T cell people interested. Then they think about what funding would work for them. There is little point trying to raise money in advance of that.

How can we (or Mark Davis) get them interested? What steps need to be taken to get this underway?

It would be great to have a new UK or European team doing some proper biomedical research on ME here - not only do we need a replication of this work, but we need to be attracting good new people to the field and gaining attention for it.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
How can we (or Mark Davis) get them interested? What steps need to be taken to get this underway?

It would be great to have a new UK or European team doing some proper biomedical research on ME here - not only do we need a replication of this work, but we need to be attracting good new people to the field and gaining attention for it.

The word needs to be passed around in as many places as come up. No doubt it will be a talking point at the next IiME meeting and maybe something for EUROMENE. There are good immunologists at LSHTM itself but there have been some moves recently. Charles will no doubt be keeping an eye out too. I have emailed a few people who might be in the grapevine.
 
Messages
2,087
How can we (or Mark Davis) get them interested? What steps need to be taken to get this underway?

I would guess Ron Davis or the OMF will look to replicate any findings of interest in separate studies too.

That's what they are doing with the Naviaux metabolomics study.

Obviously the more groups involved the better but I am sure when a paper is published we will hear more from Ron / OMF.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
The word needs to be passed around in as many places as come up. No doubt it will be a talking point at the next IiME meeting and maybe something for EUROMENE. There are good immunologists at LSHTM itself but there have been some moves recently. Charles will no doubt be keeping an eye out too. I have emailed a few people who might be in the grapevine.

Thank you very much for doing this. We need to push to get important work replicated as quickly as possible, and it would be a win all round to get a replication attempt in UK/Europe, both for the Mark Davis team and for us.
 

perrier

Senior Member
Messages
1,254
Thank you very much for doing this. We need to push to get important work replicated as quickly as possible, and it would be a win all round to get a replication attempt in UK/Europe, both for the Mark Davis team and for us.
There are not enough doctors and researchers working on this illness. Can't help but be thrilled by Dr Ron Davis and team, but there aren't enough hands on deck. Shameful.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
There are not enough doctors and researchers working on this illness. Can't help but be thrilled by Dr Ron Davis and team, but there aren't enough hands on deck. Shameful.

Yes, we've got to be active in pulling people in.
 
Messages
72
Location
UK
Paolo....... all I can think to say is Wow. Many thanks for posting this.

What an excellent post. Lots of info and lots of hope.

So since I'm in UK.......begs the questions;

1) Will anybody be testing the ME Biobank samples like this to see if this work can be replicated?
2) Does the ME Biobank get any funding from UK government to help keep it going?

If the answers to the above are "no" then......

3) Why not?
4) What can be done to improve on that?
 

paolo

Senior Member
Messages
198
Location
Italy
Paolo....... all I can think to say is Wow. Many thanks for posting this.

What an excellent post. Lots of info and lots of hope.

So since I'm in UK.......begs the questions;

1) Will anybody be testing the ME Biobank samples like this to see if this work can be replicated?
2) Does the ME Biobank get any funding from UK government to help keep it going?

If the answers to the above are "no" then......

3) Why not?
4) What can be done to improve on that?

The second step (TCR clustering) and third step (epitopes finding) of what I have named the universal immune test, are based on a technology (a combination of bioinformatics and some laboratory techniques) that are available only at Stanford, at present, as far as I know. So, there should be a joint effort. The main problem is lack of money. I think that the entire process, from TCRs sequencing to epitopes discovery for a single patient is quite expensive.
 

Frenchguy

Senior Member
Messages
119
Location
France
The second step (TCR clustering) and third step (epitopes finding) of what I have named the universal immune test, are based on a technology (a combination of bioinformatics and some laboratory techniques) that are available only at Stanford, at present, as far as I know. So, there should be a joint effort. The main problem is lack of money. I think that the entire process, from TCRs sequencing to epitopes discovery for a single patient is quite expensive.

@Jonathan Edwards