Solve M.E. What's New in ME/CFS? Interview with Dr. Chris Ponting

This was an interesting and fairly hopeful interview.

When asked what he'd do with double the funding, Chris spoke instead about what he'd do with the 20million for SequenceME instead, or rather, the benefits it could bring.

It made me more angry than ever with the MRC, and made me think about whether we as a collective can do anything to help get this funded. I think if partial funding were secured a big coordinated patient funding drive from A4ME and perhaps other charities could help raise quite a bit.

I remember talk of it being broken up into modules, and I do think if they can raise funds for the ME sample processing and analysis but not for the long covid portion yet then the former should be prioritised, as pwLC-ME will likely benefit from any discoveries in pure ME/CFS research, although of course we cant be certain and could probably learn a lot from comparing whole genome data for both.
 
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V.R.T. said:
This was an interesting and fairly hopeful interview.

When asked what he'd do with double the research, Chris spoke about what he'd do with the 20million for SequenceME instead, or rather, the benefits it could bring.

It made me more angry than ever with the MRC, and made me think about whether we as a collective can do anything to help get this funded. I think if partial funding were secured a big coordinated patient funding drive from A4ME and perhaps other charities could help raise quite a bit.

I remember talk of it being broken up into modules, and I do think if they can raise funds for the ME sample processing and analysis but not for the long covid portion yet then that should be prioritised as pwLCME will likely benefit from any discoveries in pure ME/CFS research, although of course we cant be certain and could probably learn a lot from comparing whole genome data for both.
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I think you suggested it in another thread, but I'd also like to see collaborations with other charities such as the ME CFS Research Foundation. They seem to have successful fundraising drives, but I'm not sure how they could be convinced to fund research in other countries, especially a non-EU one.

One of their goals has not been met:

Expansion of fundraising and promotion of project initiatives in other EU countries: We have recently been able to successfully expand our fundraising activities (see half year report summer 2025). The expansion of our project funding to other EU countries has not yet been implemented. Unfortunately, important prerequisites for this – a sustainable assumption of funding responsibility in Germany by politicians, established funding institutions and the pharmaceutical industry – have not yet been met.
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Lots of imo silly things such as Hbot and immunoadsorption have been investigated in Germany and although those studies have now been completed, I hope they don't fund similar trials in the future.

Alternatively, I'm sure the OMF sits on sufficient funds.
 
OrganicChilli said:
I think you suggested it in another thread, but I'd also like to see collaborations with other charities such as the ME CFS Research Foundation.
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I believe I was talking about the German government's new initiative- I am confused about whether MECFS Research Foundation are involved with that actually.

But yes, they could be a candidate. I thought their recent call for drug trials applications looked fairly reasonable e.g. anti CD38, T Cell depletion.

I know that at the recent meeting the DecodeME team apparantly talked about seeking funds in America. I wonder how that went...
 
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