MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

[Adrian]

Isn’t SequenceME by far the most important project to fund next, assuming ResetME/Dara gets fully funded soon-ish?

I would have thought getting more researchers involved and following up on things found in decode would be more important (or as important) especially in terms of the potential to turn knowledge into potential treatments.

This means recruiting those researchers with expertise in the right areas into ME research and making it easy for them to get involved (i.e. if they see funding is hard, selecting patients is hard, etc then this can be a blocker in terms of getting their attention.

 

[V.R.T.]

I would have thought getting more researchers involved and following up on things found in decode would be more important (or as important) especially in terms of the potential to turn knowledge into potential treatments.

Yes I was thinking along those sorts of lines too. And in a lot of ways those sorts of studies would have a quite compelling fundraising hook.

My feeling is that A4ME, MERUK and MEA are quite aligned on an how we push research (and talking on this along with UK researchers). So I think there are groupings we can build on.

That's reassuring to hear. Are things falling into place on that front then or is there more that needs to be done?

 

[V.R.T.]

This means recruiting those researchers with expertise in the right areas into ME research and making it easy for them to get involved (i.e. if they see funding is hard, selecting patients is hard, etc then this can be a blocker in terms of getting their attention.

In terms of patient selection surely the best place for a researcher to start would be by contacting DecodeME participants local to their institution? And then screening them more thoroughly themselves?

If they were somehow aligned with Edinburgh (e.g. through PRIME) then perhaps they could request access to the list of participants who were interested in taking part in more research?

Or would being contacted by non Edinburgh researchers be in breach of privacy? I can see all sorts of problems here actually but I'm posting anyway incase it stimulates a better idea!

 

[Andy]

In terms of patient selection surely the best place for a researcher to start would be by contacting DecodeME participants local to their institution? And then screening them more thoroughly themselves?

If they were somehow aligned with Edinburgh (e.g. through PRIME) then perhaps they could request access to the list of participants who were interested in taking part in more research?

Or would being contacted by non Edinburgh researchers be in breach of privacy? I can see all sorts of problems here actually but I'm posting anyway incase it stimulates a better idea!

There is an established data access process where researchers can request access to either the existing genetic and questionnaire data or for participants, who gave DecodeME the permission to do so, to be recontacted to invite them to participate in other studies.

 

[V.R.T.]

There is an established data access process where researchers can request access to either the existing genetic and questionnaire data or for participants, who gave DecodeME the permission to do so, to be recontacted to invite them to participate in other studies.

Oh excellent I knew about the genetic and questionaire data but not about the contacting participants part (I thought that was just for future Edinburgh studies).

 

[Kiristar]

I think it's more important in this case to get as many researchers as possible to attend. Though it would be good for us to be able to see watch afterwards if it's recorded.

I agree, particularly as space is very limited and we don't know how many extra virtual spaces have been released.

 

[Utsikt]

I would have thought getting more researchers involved and following up on things found in decode would be more important (or as important) especially in terms of the potential to turn knowledge into potential treatments.

This means recruiting those researchers with expertise in the right areas into ME research and making it easy for them to get involved (i.e. if they see funding is hard, selecting patients is hard, etc then this can be a blocker in terms of getting their attention.

But how do we know where to focus our efforts? Won’t «brain and immune system» be far too vague?

 

[V.R.T.]

Does there need to be a study that is 'proof of concept' in terms of this fundraising model? I.e. find an important/well designed proposal floating around that hasn't been funded and fundraise for it through a charity? Even better if its one by someone newer to the field in a way. Then we can point to that and say yes there might not be a lot of MRC funding but we have this model of charity funding that can work.

Or alternatively a different model where the 'thing' the fundraising is for is 'projects following on from DecodeME to bring new expertise into the field and hopefully turn knowledge into treatments'.

Because people would probably donate to that without having to get too forensic about the first projects that are funded before there's any funds to actually offer them.

 

[Kitty]

Does there need to be a study that is 'proof of concept' in terms of this fundraising model?

Maybe not? It's been fairly well established for a long time.

I.e. find an important/well designed proposal floating around that hasn't been funded and fundraise for it through a charity?

The daratumumab trial would be a good example. The team wasn't raising money from a zero start, but it's often the case that there's already some provision in place—even if it's only that the PI's salary's already covered and time in a university lab/access to equipment will be provided as support-in-kind.

It has all the ingredients: an interesting story, a team people trust, a manageable target, and a sense of urgency so we don't have to wait any longer than necessary for answers.

 

[V.R.T.]

But how do we know where to focus our efforts? Won’t «brain and immune system» be far too vague?

My understanding is that PRIME is partly about bringing in experts in the genes implicated in DecodeME. So they can investigate those areas. Of course we don't know for sure that the imputed genes are the ones involved but I don't think that means we need to sit around for two or three years twiddling our thumbs while SequenceME is conducted.

It is possible that after a bit more analysis DecodeME data will give us more to go on, and maybe by the end of the year we will know a bit more from other sources too.

 

[Jonathan Edwards]

But how do we know where to focus our efforts? Won’t «brain and immune system» be far too vague?

I think the genetic leads are a lot more specific than that - glutamate synapses and interferon pathways for instance. They may be blind alleys but there is a fighting chance they will be worth exploring. We have a big team looking at rare genes in pain disorders at UCL who might be interested for instance.

 

[Utsikt]

I think the genetic leads are a lot more specific than that - glutamate synapses and interferon pathways for instance. They may be blind alleys but there is a fighting chance they will be worth exploring. We have a big team looking at rare genes in pain disorders at UCL who might be interested for instance.

That’s good to hear!

 

[Jonathan Edwards]

Does there need to be a study that is 'proof of concept' in terms of this fundraising model?

We had a whole thread exploring this idea some months back. I would be in favour of making use of maybe AfME to channel a fundraising campaign for a specific target, and an obvious option is a follow-on in Edinburgh even if not Sequence ME.

 

[V.R.T.]

We had a whole thread exploring this idea some months back.

This has been split from How to support good research and enable more patients to be involved in it


I wonder if it is time to think of a new venture - something that has looked an impossible task in the past but maybe should no longer. I think there would be a place for an S4ME research fund and I would suggest, for specific tactical reasons, targeting it at bridge funding for one or more young scientists who have completed a PhD and are keen to remain in the field of ME/CFS.

Administration of a research fund is not a simple matter and my first thought is that it might be possible to set up a joint venture with AfME so that they administer the fund and have it as part of their portfolio but that the use of the fund is controlled primarily by S4ME members.

The online ME/CFS patient community is short of funds for obvious reasons but it has funded a senior academic salary for some years (David Tuller). From what I hear quite a large proportion of the donations come from the UK. I wonder whether there is in fact enough goodwill and depth of pocket to fund at least one bridging salary for a junior researcher. Moreover, I think there is a momentum building for ME/CFS being taken seriously more widely, for a variety of reasons.

The fund would not need to be limited to UK use. Young scientists often want to spend six months or a year on another continent as a way of building collaboration. And a number of S4ME members in the science community are in Australia or North America.

Do you mean this thread?

I would be in favour of making use of maybe AfME to channel a fundraising campaign for a specific target, and an obvious option is a follow-on in Edinburgh even if not Sequence ME.

That sounds like a good idea. Maybe this discussion should migrate over to that thread, where we could all discuss what the 'target' project(s) should be and how to facilitate this.

 

[Kitty]

It has all the ingredients: an interesting story, a team people trust, a manageable target, and a sense of urgency so we don't have to wait any longer than necessary for answers.

Just to expand on this a bit more. There are a couple of things that would help a fundraising drive for ME/CFS research, which is complicated by endless small studies having been done without getting us very far. That makes it hard for people to know whether money they find from their often limited means will make any difference.

One would be other researchers helping to give it credibility by saying it's a good question and one it's useful to have answered.

Another is involvement with patients, whether it's full-scale PPI, or engaging on S4ME during the planning phase, or being clear in the comms that it's a follow-up to a project that's already done PPI (such as DecodeME).

A third is the team indicating from the outset that they'll make the data freely available afterwards.

 

[Jonathan Edwards]

I have emailed the UCL pain genetics people today and they sound interested in the Showcase meeting. We plan to get together at UCL in due course. If we can find a common target they are seriously good people to get involved.

 

[Sasha]

I have emailed the UCL pain genetics people today and they sound interested in the Showcase meeting. We plan to get together at UCL in due course. If we can find a common target they are seriously good people to get involved.

This is fantastic news and just shows what a crazily bad job of comms has been done in alerting interested people to this meeting.

 

[V.R.T.]

If we can find a common target

Can you explain what you mean by common target in this context?

 

[Verity]

I have emailed the UCL pain genetics people today and they sound interested in the Showcase meeting. We plan to get together at UCL in due course. If we can find a common target they are seriously good people to get involved.

Awesome, thanks for reaching out to them!

 

[Adrian]

I have emailed the UCL pain genetics people today and they sound interested in the Showcase meeting. We plan to get together at UCL in due course. If we can find a common target they are seriously good people to get involved.

Great.

Its a shame that the MRC/NIHR didn't know to invite them.