Christmas appeal for UK ME Biobank at the Royal Free Hospital, London

[Sasha]

Still no guarantee that the Wessely school of psychiatry will be denied access to our blood and tissues then?

I think that's been made very clear, and the reasons why. If you disagree with those reasons, why do you disagree with them?

 

[charles shepherd]

I think that's been made very clear, and the reasons why. If you disagree with those reasons, why do you disagree with them?

Please go back and actually read what I have said

I have made the position very clear and I will not go on repeating it

A Biobank situated within a UK academic institution like UCL cannot say that applications from named individuals or from a particular branch of medicine will be denied access to the samples

All requests to use samples will be peer reviewed and samples will only be made available to researchers who have submitted a sound research proposal that will increase our understanding of causation, sub-grouping or treatment

 

[Sasha]

I think that's been made very clear, and the reasons why. If you disagree with those reasons, why do you disagree with them?

Please go back and actually read what I have said

I have made the position very clear and I will not go on repeating it

A Biobank situated within a UK academic institution like UCL cannot say that applications from named individuals or from a particular branch of medicine will be denied access to the samples

All requests to use samples will be peer reviewed and samples will only be made available to researchers who have submitted a sound research proposal that will increase our understanding of causation, sub-grouping or treatment

@charles shepherd - not sure if you realised I was addressing Min with my comment. I agree with your position and your reasoning on the biobank.

I think there comes a point when discussion of a contentious issue breaks down where people can read the posts and make up their own minds about whether people are simply repeating a position or engaging in constructive discussion and responding to points put to them. I think you can trust people on PR to do that.

 

[Min]

Please go back and actually read what I have said

I have made the position very clear and I will not go on repeating it

A Biobank situated within a UK academic institution like UCL cannot say that applications from named individuals or from a particular branch of medicine will be denied access to the samples

All requests to use samples will be peer reviewed and samples will only be made available to researchers who have submitted a sound research proposal that will increase our understanding of causation, sub-grouping or treatment

Most of the research proposals into 'myalgic encephalomyelitis' that are passed in the UK turn out to be'researching' the psychology of mild fatigue and concluding that we all need to exercise! It would be tragic if the people who donate to the biobank were betrayed by having it used in this way.

 

[Sasha]

Most of the research proposals into 'myalgic encephalomyelitis' that are passed in the UK turn out to be'researching' the psychology of mild fatigue and concluding that we all need to exercise! It would be tragic if the people who donate to the biobank were betrayed by having it used in this way.

The choice before us is to have a biobank that is open to all researchers who pass the peer review process (for unavoidable, good reasons that have been clearly explained) or to have no biobank.

Which would you prefer?

 

[Min]

The choice befois biomedical treatment e us is to have a biobank that is open to all researchers who pass the peer review process (for unavoidable, good reasons that have been clearly explained) or to have no biobank.

Which would you prefer?

I would prefer the people who have abused us for three decades not to have access to a patient funded blood and tissue bank.

 

[Valentijn]

I would prefer the people who have abused us for three decades not to have access to a patient funded blood and tissue bank.

That's not an option in the real world.

 

[peggy-sue]

It's a bit disingenuous to describe it as being a UK bank.
There are no "specialist centres" in Scotland (thankfully) but everybody in Scotland would be excluded because of this.

 

[Sasha]

I would prefer the people who have abused us for three decades not to have access to a patient funded blood and tissue bank.

Which isn't one of the options available, as has been explained and as I said in my post.

My question was a serious one. My concern is that here we have an initiative that can help us all and that, because it doesn't have an impossible feature that you would like it to have, you want to encourage people not to donate to it. I think that's damaging to us all.

I'd really appreciate an answer to my question, which was: there are only two choices - no biobank or a biobank available to anyone whose research proposal passes appropriate peer review. Which choice do you favour? Because as @Valentijn said, we're in the real world here.

 

[charles shepherd]

It's a bit disingenuous to describe it as being a UK bank.
There are no "specialist centres" in Scotland (thankfully) but everybody in Scotland would be excluded because of this.

Sorry - I don't understand your point

There is no restriction on people from Scotland (or anywhere else in the UK) donating blood samples - or joining the disease register when this is able to start adding details of people who would be willing to donate blood, tissue, or post-mortem tissue for research into ME/CFS

But we do have a geographical restriction relating to where the sample is taken

This is due to the fact that once the blood sample has been taken it has to be couriered as quickly as possible to the Royal Free Hospital for processing and storing in the special containers
This means we are currently only able to use blood from people who donate a sample that can be transported to nthe Royal Free Hospital in LOndon and processed within a six hour period

​

 

[charles shepherd]

24 hours in since the launch of the pledging stage (which closes on October 3), seven people have now pledged a total of £4,450.

 

[Undisclosed]

This thread was initiated in order to advise people that the ME Association will be trying to raise funds to help develop the UK's ME/CFS biobank. There were multiple reported posts related to many off-topic comments that were both inflammatory and provocative in nature that were not related to the fund raising itself.

If you do not wish to support a specific charity, that is entirely your own personal choice. Threads like this should not be used to make destructive comments about any ME/CFS charity just because you don't happen to like them. Posting off-topic comments only serves to hi-jack a thread. If you have an issue with a charity, why not start a thread to have a constructive discussion on how the charity in question might do things differently. Continual dumping on any organization is not conducive the kind of conversation we strive for. Destructive comments designed to provoke members into an off-topic discussion that end up in multiple reported posts and thread closures will no longer be tolerated.

Any off-topic posts and personal attacks have been removed. If you have any questions regarding the removal, please contact me via Conversation.

Thank you.

Kina (Moderation Team Lead).

 

[Sasha]

Thanks, @Kina - I appreciate the work that you and the other moderators have done on this thread.

If anyone sees a post that they consider to be rude or inflammatory, I suggest that they don't respond but instead hit "Report" on the offending post, which they can find right at the bottom of it where the name of the person posting and the time are given.

Four hours ago on MEA FB:

ME AssociationAnother pledge of £200 came in overnight so we now have eight people who have offered pledges totalling £4,650. We're looking for £25,000-worth of pledges for this super cause by October 3 – and that's even before the appeal goes public at the beginning of December. Could you help with this?​

 

[Sasha]

Just posted on MEA FB:

Off to Keppel Street on Monday to talk to those great people at the London School for Hygiene and Tropical Medicine about our ME/CFS Biobank appeal: http://www.meassociation.org.uk/201...biobank-could-you-be-a-sponsor-of-our-appeal/

ME Association So far, in just under three days, 10 people have offered to sponsor the appeal with promises totalling £4,850. Very pleased with progress so far.​

 

[Chickadee9]

This is a crucial initiative for PWME. Biobanks are already identifying associated genes for other diseases such as autism. I find it difficult to understand why a few people on here persist in opposing any scientific initiative that will help PWME just because there is the merest possibility that someone they don't like has an association with it, however remote. They remind me of what Talleyrand said of the Bourbons "They have forgotten nothing and they have learned nothing".

 

[Sasha]

This very worthwhile fund is making progress.

From MEA FB:

Just for once, we're raising money for someone else. £7,250 pledged so far to secure the future of the UK ME/CFS Biobank, which is the first of its type in Europe. We think it's that important!

http://www.meassociation.org.uk/201...biobank-could-you-be-a-sponsor-of-our-appeal/

We were filming a promotional video for the ME Biobank after the NIH meeting earlier this week.​