Sequence ME & Long Covid now open for fundraising

[Robert 1973]

For my birthday yesterday, I decided to do a fundraiser for Sequence ME & LC: https://www.justgiving.com/page/robafme

So far I’ve raised £345. If anyone would like to help me reach my target of £500 I would be most appreciative.

As I’ve said before, I would highly recommend doing fundraisers for birthdays and Christmas. Since my 40th in 2013 I’ve now raised over £20,000 + Gift Aid for different ME/CFS research charities.

If there are 400,000 people in the UK with ME/CFS we would only need to raise an average of £50 each in order to raise £20 million.

NB I emailed fundraising@actionforme.org.uk to ask for all the money I raise to go towards Sequence ME & LC, which they agreed to.

 

[Simon M]

As I’ve said before, I would highly recommend doing fundraisers for birthdays and Christmas. Since my 40th in 2013 I’ve now raised over £20,000 + Gift Aid for different ME/CFS research charities.

That is seriously impressive. Congratulations.

I emailed fundraising@actionforme.org.uk to ask for all the money I raise to go towards Sequence ME & LC, which they agreed to.

That's interesting. Charities don't usually like restricting donations in this way but for such an important study like this, it make sense.

 

[Dolphin]

MEA comment on Facebook:

Rachel Dawson Sadly, we are nowhere near the stage where the interesting genetic information from DecodeME can be translated into the very speculative gene therapy treatment you propose. On a more positive note, the genetic research in Edinburgh is continuing in the form of SequenceME and this has recently received government funding of nearly £5 million. The MEA Ramsay Research Fund is also looking at how we might fund some of this genetic research. So we will need to continue to try and make sure that people with ME/CFS receive the care and management they need - which is clearly not happening at the moment. Funding needs to go in both directions. Dr CS MEA.

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[V.R.T.]

MEA comment on Facebook:

Rachel Dawson Sadly, we are nowhere near the stage where the interesting genetic information from DecodeME can be translated into the very speculative gene therapy treatment you propose. On a more positive note, the genetic research in Edinburgh is continuing in the form of SequenceME and this has recently received government funding of nearly £5 million. The MEA Ramsay Research Fund is also looking at how we might fund some of this genetic research. So we will need to continue to try and make sure that people with ME/CFS receive the care and management they need - which is clearly not happening at the moment. Funding needs to go in both directions. Dr CS MEA.

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While CS is almost certainly right about this particular very speculative idea, I do find the MEA output is always unnecessarily sceptical about the idea of treatments happening on a non glacial timeline.

And while he's right that funding needs to go both ways, the MEA is not covering itself in glory in either direction. At least of late the MEA has spent far more funds inadvertently making the medical care situation worse through its involvement with Tyson et al than it has on good quality research that might bring us treatments.

It's good to hear they are looking into how they can fund some of the genetics though. In my opinion they have a moral obligation as the most prominent MECFS charity to do so. Otherwise what do people donate for?

 

[hotblack]

I share a lot of the sentiments @V.R.T.

It’s good they’re looking to put some money towards good research. Beyond the admirable funding of things like CureME/the Biobank it’s been pretty poor. It’s often looked to me like a clear separation between the Ramsay funding and the rest of the MEAs coffers. That is wasn’t the MEA who stepped in to support SequenceME when needed but other charities is telling https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/

I also find the calls from CS for care until we have treatments spot on (although we don’t need ‘management’). But given the MEA is spending money supporting the failing system rather than calling for reform I can’t give the charity any credit there. They’re spending significant sums of money on precisely the opposite of appropriate care for those most in need

 

[bobbler]

I share a lot of the sentiments @V.R.T.

It’s good they’re looking to put some money towards good research. Beyond the admirable funding of things like CureME/the Biobank it’s been pretty poor. It’s often looked to me like a clear separation between the Ramsay funding and the rest of the MEAs coffers. That is wasn’t the MEA who stepped in to support SequenceME when needed but other charities is telling https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/

I also find the calls from CS for care until we have treatments spot on (although we don’t need ‘management’). But given the MEA is spending money supporting the failing system rather than calling for reform I can’t give the charity any credit there. They’re spending significant sums of money on precisely the opposite of appropriate care for those most in need

As was Neil Riley’s response to DecodeME results and I’m sorry but I’ve little reason to think the rest of the trustees are different to him on much of what we hear of given what we’ve seen , what they’ve signed off and okayed and chosen for patients and the fact they chose to change not one jot of it after he went or even did they make any statement disagreeing with what he said

Charles is different but the issue is what most who interact with the MEA think it is from seeing him and hearing from him doesn’t appear to be what it is from a who else has power what they think and choose to do.

In the end with intransigence on that issue in a way that inadvertently providing cover for all that is almost as big an issue because it means who people think they are entrusting their donations and support to on the basis of that doesn’t equal what’s going on is a problem.

 

[Kitty]

As was Neil Riley’s response to DecodeME results and I’m sorry but I’ve little reason to think the rest of the trustees are different to him on much of what we hear of given what we’ve seen , what they’ve signed off and okayed and chosen for patients and the fact they chose to change not one jot of it after he went or even did they make any statement disagreeing with what he said

I admit to having wondered whether part of the reason the MEA didn't directly support and fund the Edinburgh studies was because AfME did.