UK NICE - Projects to support the development of the NICE guideline on ME/CFS: diagnosis and management

[ukxmrv]

I actually think there are some serious ethical issues here with researchers accessing patient groups. The issues would be severe if the researchers were involved in service provision themselves. If they were not there would be other issues. Any project would need ethical approval which could take 3 months. It is not clear what the project is supposed to find out. It seems crazy to me to put this out now without a clearer explanation.

It wasn't clear or even suggested back then (when it was discussed at my table at the 2nd NICE meeting) that they would put this out to tender. The impression given was that it would be done by the National Guidelines Group.

I wonder if this is standard procedure or something entirely new? Guessing new, as they wouldn't have been asking for ideas.

 

[Jonathan Edwards]

Nah, it'll be fine, they can just roll the ethical approval over from some sort of service provision can't they???

Naughty

 

[Wonko]

SOP it seems.

 

[Barry]

I actually think there are some serious ethical issues here with researchers accessing patient groups. The issues would be severe if the researchers were involved in service provision themselves. If they were not there would be other issues. Any project would need ethical approval which could take 3 months. It is not clear what the project is supposed to find out. It seems crazy to me to put this out now without a clearer explanation.

I wonder if this is properly appreciated? I know it should be, but I was taught to never assume, but check. Should we check, just in case a very large egg is about to be laid.

 

[Wonko]

I can't see any reason why you wouldn't be allowed to put in a FoI for that information, have to take it to appeal, and be told it's vexatious ,a year after NICE has gone it's own merry way and made the decision.

 

[Jonathan Edwards]

I wonder if this is properly appreciated? I know it should be, but I was taught to never assume, but check. Should we check, just in case a very large egg is about to be laid.

I forgot to add that the problem is ten times bigger for children. I would have thougjt a decent ethics committee would have to refuse. This is not, as someone said, service provision.

 

[Suffolkres]

I actually think there are some serious ethical issues here with researchers accessing patient groups. The issues would be severe if the researchers were involved in service provision themselves. If they were not there would be other issues. Any project would need ethical approval which could take 3 months. It is not clear what the project is supposed to find out. It seems crazy to me to put this out now without a clearer explanation.

Ethical approval was secured for the Biobank research which served the severely affected in Norfolk and Suffolk, originally in 2011. At that time and until 2018, none of the researchers were involved in the service delivery.

 

[adambeyoncelowe]

It seems very late to be putting out to tender for proposals to employ people to do research projects. Maybe this has come out of the committee meetings so far?
? @adambeyoncelowe

I've read it through and it's definitely about running focus groups. I've asked a few more questions, as it reads like this is a job for a researcher, and hence, as Jo says, it would need ethical approval. But if it were more informal, then it might run on a different model and could be run by a youth group or charity (I'm thinking of the children's group specifically here, but the severely affected group probably could have a similar model).

 

[Amw66]

I've read it through and it's definitely about running focus groups. I've asked a few more questions, as it reads like this is a job for a researcher, and hence, as Jo says, it would need ethical approval. But if it were more informal, then it might run on a different model and could be run by a youth group or charity (I'm thinking of the children's group specifically here, but the severely affected group probably could have a similar model).

That doesn't give much reassurance.
There is so much wrong with children's services and so much reputational capital at stake ( for both practitioners and some charities) that this could go to the extreme end of either scale.

 

[adambeyoncelowe]

That doesn't give much reassurance.
There is so much wrong with children's services and so much reputational capital at stake ( for both practitioners and some charities) that this could go to the extreme end of either scale.

I wouldn't assume anything based on my early morning thoughts! Best to ask NICE directly, if in doubt.

 

[Jonathan Edwards]

The meed for ethical approval revolves around conflicts of interest that are inevitably present when researchers are involved. A common example is the duress that may occur when junior colleagues are asked to act as normal controls. The Biobank project is a good example of how to do things properly.

I think something like this should be done by a support charity like MEA. But for children you still have the problem of how you find cases without gojng through their service providers.

 

[Amw66]

The meed for ethical approval revolves around conflicts of interest that are inevitably present when researchers are involved. A common example is the duress that may occur when junior colleagues are asked to act as normal controls. The Biobank project is a good example of how to do things properly.

I think something like this should be done by a support charity like MEA. But for children you still have the problem of how you find cases without gojng through their service providers.

You may find that charities have online forums for those under 18. Action for ME does. Tymes Trust may also have the ability to do this
Given some young people's experiences, there may be a reluctance to take part. There is also the moderate/ severe aspect - how can engagement be made to ensure their experiences and views can inform service provision. Remember until recently children did not officially get severe ME.

Eta
Tagging @Tilly for thoughts

 

[adambeyoncelowe]

You may find that charities have online forums for those under 18. Action for ME does. Tymes Trust may also have the ability to do this
Given some young people's experiences, there may be a reluctance to take part. There is also the moderate/ severe aspect - how can engagement be made to ensure their experiences and views can inform service provision. Remember until recently children did not officially get severe ME.

Eta
Tagging @Tilly for thoughts

Most of my young people (in my LGBT young writers group) like Skype or Facebook Messenger. So I'm sure there's a way to get them involved without them having to be there in person.

You could organise virtual hangouts for most of it, and then the two in-person meetings at the beginning and end. Or you could specifically target different groups with different sessions (so mild for the in-person groups and moderate to severe for the virtual groups).

 

[Jonathan Edwards]

That sounds quite promising. I certainly think this should be done through charity membership rather than through a service provider team.

 

[Tilly]

I actually think there are some serious ethical issues here with researchers accessing patient groups. The issues would be severe if the researchers were involved in service provision themselves. If they were not there would be other issues. Any project would need ethical approval which could take 3 months. It is not clear what the project is supposed to find out. It seems crazy to me to put this out now without a clearer explanation.

NICE were asked many times and I am still asking for the severe and children's voices to be heard. I have been given personal assurances this would happen.

I have no idea why they have done it this way with researchers involved. We (parents) have made it clear and crystal that our children are gaslighted and bullied.

I am also very cross, beyond cross that parents who have been falsely accused and with no evidence of harming their children have not had an opportunity to have a voice on this committee.

Have a lot more to say but need a bucket of coffee to keep a civil tong in my head.

It is a load of banana skins to trip us up by.

 

[Tilly]

Most of my young people (in my LGBT young writers group) like Skype or Facebook Messenger. So I'm sure there's a way to get them involved without them having to be there in person.

You could organise virtual hangouts for most of it, and then the two in-person meetings at the beginning and end. Or you could specifically target different groups with different sessions (so mild for the in-person groups and moderate to severe for the virtual groups).

But who would be able to put this together as a researcher is needed? Most of those that need their voices heard are so traumatised by how they have been treated.

 

[Tilly]

It wasn't clear or even suggested back then (when it was discussed at my table at the 2nd NICE meeting) that they would put this out to tender. The impression given was that it would be done by the National Guidelines Group.

I wonder if this is standard procedure or something entirely new? Guessing new, as they wouldn't have been asking for ideas.

I would think and looking back on how things have been put together, this has been the only way to get this going. The researchers have control?

 

[chrisb]

I suppose that one bright aspect of this is that it must be clear to all that to appoint a researcher in any way connected with matters currently under investigation would be an obviously flawed decision.

 

[Tilly]

I've read it through and it's definitely about running focus groups. I've asked a few more questions, as it reads like this is a job for a researcher, and hence, as Jo says, it would need ethical approval. But if it were more informal, then it might run on a different model and could be run by a youth group or charity (I'm thinking of the children's group specifically here, but the severely affected group probably could have a similar model).

They also have been asked to have a group of parents falsely accused of FII. This is very important as there has been an alarming increase of forced rehabilitation on children and those severely effected. Having a child who needs to be tube fed parents are accused of FII and an insistence of child taking into secure Mental Health units is rising.

Doctors cannot see that their forcing children to take off eye masks, earphones raising the bed into a sitting position for allotted time increasing the time each day regardless is causing suffering. If the parent tries to intervene they are accused still further. This they say is to combat deconditioning.

The children are being put on open wards and no one can intervene. Most parents are now having to get solicitors involved when even going to GPs.

This needs to be discussed. Most parents are in a perpetual NHS driven anxiety. I cannot understand with Merryn family openly sharing this that there is not a more concerted effort to engage and actively seek out such parents there is enough of them.

 

[Jonathan Edwards]

The fine print seems to imply that the 'researchers' would have to be social science people with expertise in focus groups. They would need somewhere to advertise for volunteers - which ought to be through a support charity. Presumably there are academic units that bid for these things but the timeline is very tight.