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

[Sasha]

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.

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.

 

[Andy]

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.

Perhaps use the Contact Moderators button and request them to make the edit? Personally, I don't think multiple threads on the same topic are a good idea.

 

[Amw66]

Neil just wanted us all to know that his anecdotal knowledge of “glandular fever causes ME” is more important than further genetic investigation into Long Covid and ME.
As a comment, it’s not just lacking scientific rigour it’s also a failure of English language comprehension.

he' trying to retain relevence....

 

[PeterW]

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.

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

 

[JellyBabyKid]

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.

Thanks @Andy

 

[Hutan]

We have moved some posts to a new thread: Should those who pushed BPS theories be held to account once the biological basis of ME/CFS is understood?