SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

Andy said:
Thanks for asking. There is a dedicated discussion thread for fundraising here but in summary:

Individual donations are best made directly here to AfME.
If you have plans on a personal fundraising effort and want to talk to AfME to discuss it first you can contact them on 0117 927 9551 or email infosupport@actionforme.org.uk
And if you happen to know any rich people who are looking to give lots of money then either contact AfME as above or direct message me the details and I can pass it directly on to the SequenceME business development manager - part of their role is to find 'high value' donors and other funding opportunities. Yes, tongue in cheek but you never know who someone knows.

Hope that helps.
Click to expand...
I don't seem able any more to edit my OP on that thread or I'd replace it by your info. I wonder if we need a fresh thread that's up to date.
 
Kitty said:
I agree, but it's a different thing the community allowing them an off-ramp than individuals who've been harmed. The process always leaves residual anger, but at least it may stop some of the current harm and make it less of a risk in the future.
Click to expand...
Sadly I doubt there will ever be suitable redress or justice for the harm which false classifications of ME have done to people.
That appears to be the same for victims of the contaminated blood scandal, for victims of the Post Office scandal, and many other similar issues.

My conclusion is to move as fast as possible to close-off the cause of the abuse to minimise ongoing impact, but the past will never be fully compensated, I fear.

On a side note, I am thrilled that the ME Association is doing do much to publicise the Sequence ME news, but I wish the would acknowledge Action for ME's role in achieving it. We should all have the same objectives in this space, and failing to recognise someone else's achievement for the common good doesn't look great.

Mod note: content not relevant to this thread after a thread split has been greyed, post has been copied to the new thread here
 
Last edited by a moderator:
Andy said:
Thanks for asking. There is a dedicated discussion thread for fundraising here but in summary:

Individual donations are best made directly here to AfME.
If you have plans on a personal fundraising effort and want to talk to AfME to discuss it first you can contact them on 0117 927 9551 or email infosupport@actionforme.org.uk
And if you happen to know any rich people who are looking to give lots of money then either contact AfME as above or direct message me the details and I can pass it directly on to the SequenceME business development manager - part of their role is to find 'high value' donors and other funding opportunities. Yes, tongue in cheek but you never know who someone knows.

Hope that helps.
Click to expand...
Thanks @Andy :thumbup:
 
Andy said:
Thanks for asking. There is a dedicated discussion thread for fundraising here but in summary:

Individual donations are best made directly here to AfME.
If you have plans on a personal fundraising effort and want to talk to AfME to discuss it first you can contact them on 0117 927 9551 or email infosupport@actionforme.org.uk
And if you happen to know any rich people who are looking to give lots of money then either contact AfME as above or direct message me the details and I can pass it directly on to the SequenceME business development manager - part of their role is to find 'high value' donors and other funding opportunities. Yes, tongue in cheek but you never know who someone knows.

Hope that helps.
Click to expand...
Is there any kind of political campaign to write to MPs, lobby the Secretary of State for Health and kind of petition?

Our local group is meeting with our MP next week, and I have drafted a PQ for him to ask about funding the rest of this project, but it would be great to have a specific ask that everybody is getting behind so that we can put pressure on MPs/the government. Thanks!
 
JellyBabyKid said:
Is there any kind of political campaign to write to MPs, lobby the Secretary of State for Health and kind of petition?

Our local group is meeting with our MP next week, and I have drafted a PQ for him to ask about funding the rest of this project, but it would be great to have a specific ask that everybody is getting behind so that we can put pressure on MPs/the government. Thanks!
Click to expand...
Sorry, no, there isn't. I will pass the general idea on to AfME though and see if something can come of that.

I see that there is this discussion thread already on something related
 
I’m late to this and haven’t been as active on the forum recently but am so incredibly pleased to hear this. It’s great news. I’m thankful for everyone who has been working behind the scenes to achieve this. It feels like some of the lobbying individuals have dine has helped too so I support any efforts for more!
 
Great interview. Some highlights:
  • Chris Ponting says that sequence ME could potentially reveal subtypes (I think the idea is these would be subtypes based on rare variants, analogous to how familial hemiplegic migraines are a subtype of migraine and themselves have three subtypes based on which gene is involved).
  • Mentions drug companies are more willing to invest in targets based on rare variants because these are more likely to result in a successful therapy.
  • Emphasizes they will start comparing the 6000 MECFS cases against control data as soon as they can, rather than waiting until they’ve completed the additional sequencing steps that are planned (ie the 9000 LC cases, and another 3000 MECFS cases).
  • Already have access to control data that was produced by the exact same dna extraction and sequencing process.
  • Analysis will cost £0.5-1 million (Im not sure if this is just of the 6000 MECFS samples?). First results could come out in 2 years (this is only a lower bound however).
  • Says that the focus on neurology comes from the magma analysis.
  • David raised the issue of FND, and Chris says there are plenty of *other* neurologists, interested in molecular and cellular neuroscience, who he thinks will be jumping on board the genetics.
  • On how the LC cohort will be defined: Chris emphasizes that the final decision will be made with patient-involvement but that he personally is most interested in comparing people with LC who pass the MECFS criteria to the pre-Covid MECFS cases.
  • There is a discussion of balancing hope with realism. Things are slower than we’d like because MECFS research is playing catch up after decades of neglect, on the other hand there is potential to leap-frog in some ways (ie with the use of very modern more powerful tools like the nanopore sequencing technology).
 
Very useful summary, thanks @ScoutB !
ScoutB said:
Already have access to control data that was produced by the exact same dna extraction and sequencing process.
Click to expand...
Was there a mention of the size of this dataset? My understanding is that size is less important than for GWAS (for example for rare genes with larger effect size), but perhaps still important enough?
 
Last edited:
On funding, at around 9.30:

Chris says the project costs approximately 20 million pounds all up, and that they have not attracted all the funding they need, even for the early work. They have to work in an overlapping way in order to get some results out quickly to start the process of identifying treatments, so they won't just think of the process sequentially.

'yeah, so 4.75 million (pounds) or so from the UK government, which is really great and we are really grateful to them for that. Now they specified that that will be essentially on consumables and not on people, and so we have this problem in that we need the people to generate the data. and then the WE&ME Foundation stepped in and gave us an award that would then allow us to start that sequencing immediately.'

Thanks to the WE&ME Foundation for that.

Chris says later that his view is the government should pay for this project, and he will put that view forward strongly. But it sounds as though the team really need support from other donors now to keep the project moving forward quickly. The next step in Phase 2 is analysing the data, it will cost about half a million pounds and take about a year.
 
Last edited:
Thank you for the summary @ScoutB!

I’m really happy to hear that they will be analyzing the data they have as soon as they can instead of waiting until they have collected and sequenced all of the LC data. And that part about LC classification is really good.

All in all, I’m very happy we have the whole Decode and Sequence team working on our illness. And David Tuller doing his science communication.

I look forward to watching the whole thing.
 
You must log in or register to reply here.
Back
Top Bottom