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

[Esther12]

Would be interesting to know if any one applying for this had been informed of the project prior to the public release.

 

[ScottTriGuy]

Would be interesting to know if any one applying for this had been informed of the project prior to the public release.

I said earlier I'd bet dollars to donuts one group has known about it and will have been preparing and will get the contract.

This is just a public relations exercise.

 

[Barry]

seemingly not if you are a child

Or a mother.

 

[Amw66]

Or a mother.

There's a misogynistic streak through all of this.

 

[Amw66]

From my inbox this morning ( I have a varied client group)
https://www.openforumevents.co.uk/e..._medium=email&utm_campaign=OFE+2+SGC+8.4.2019

 

[MEMarge]

The tender for the Young people Focus Group has been extended to 10 June

file:///C:/Users/140617/Downloads/NGC%20tender%20document%20for%20MECFS_young%20people_second%20call.pdf

 

[Barry]

The tender for the Young people Focus Group has been extended to 10 June

file:///C:/Users/140617/Downloads/NGC%20tender%20document%20for%20MECFS_young%20people_second%20call.pdf

Link is broken.

 

[Andy]

Main page, https://www.rcplondon.ac.uk/ngc-guideline-development

Direct link to document, https://www.rcplondon.ac.uk/file/12910/download?token=Ffr4BcgC

 

[Tilly]

Main page, https://www.rcplondon.ac.uk/ngc-guideline-development

Direct link to document, https://www.rcplondon.ac.uk/file/12910/download?token=Ffr4BcgC

Do we know if anyone has put themselves forward and were rejected?

I did write in with my concerns about this and am now writing to the Family Courts as this is where families end up in when accused. The problem with Family courts are that they are secret and no figures are held of those accused and turn out to be false with some which are false having children taken away similar to Ean Proctor.

The was a call for the Family Courts to be open but that was rejected this week by May.

Journalist are not even allowed to report and the mothers a afraid of having reporters in there as this can go against them.

 

[Barry]

Direct link to document, https://www.rcplondon.ac.uk/file/12910/download?token=Ffr4BcgC

Not read it all, but like this bit ...

Include the opinions of young people with severe ME/CFS. This is critical and this may need a different approach (for example, individual interviews at home) to ensure their voices are included

 

[Tilly]

Not read it all, but like this bit ...

Do you think they listened ??? I made that point and also advised that those that could not explain Me and PEM should be excluded including those who wrote the BACME severe booklet.

 

[adambeyoncelowe]

@Suffolkres, this may be of interest:

The guideline will be aimed at supporting health and social care professionals, including those working or providing input into educational and occupational health services, commissioners and people with suspected or diagnosed ME/CFS, their families and carers and the public.

 

[Tilly]

@Suffolkres, this may be of interest:

Whoop whoop that is what we need. Now just have to sort out the courts, my letter is now on the way .

 

[Suffolkres]

They said from the outset that it was needed for people providing input into education, but would RCP/NICE would not consider securing a professional who was involved in that capacity.....( like me!)

 

[Andy]

Email from NICE

Dear stakeholders,​

This is the second call for a project to support the development of the NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.

The NGC are inviting researchers to tender for the following project:

· Involving children and young people in developing a NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome diagnosis and management

All the information about the project including how to submit your proposal can be found at the link below:

https://www.rcplondon.ac.uk/ngc-guideline-development

Please note the deadline for any proposal submissions is 12 noon on Monday 10th June 2019.​

 

[rvallee]

Email from NICE

Dear stakeholders,​

This is the second call for a project to support the development of the NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.

The NGC are inviting researchers to tender for the following project:

· Involving children and young people in developing a NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome diagnosis and management

All the information about the project including how to submit your proposal can be found at the link below:

https://www.rcplondon.ac.uk/ngc-guideline-development

Please note the deadline for any proposal submissions is 12 noon on Monday 10th June 2019.​

From the recruitment document:

The aim of this work is to recruit and facilitate focus groups of young people who have been affected by ME/CFS so that their perspectives can be incorporated into the work of the GC. The NGC and NICE acknowledge that any involvement needs to occur within an ethical framework in which young people’s voices are valued, and their participation adequately supported. More information is available in The NICE Patient and Public Involvement Policy. The focus groups will add important value by bringing children and young people’s perspective to the work of the GC, including providing up-to-date insight on issues of importance to those affected by ME/CFS.

While we would seek to be guided by the contractor about the detail of work, based on their expertise, the key elements are to:

• Identify and recruit focus groups of young people who have been diagnosed with ME/CFS who represent a diverse range of backgrounds and experiences, ideally with a geographical spread across England
• The number of young people to participate is not specified and we would leave that for your deliberation. Previous groups in NICE guidelines have varied from 5 – 20, which may depend in part on the needs of the particular group and also on possible difficulties in recruitment.
• Include the opinions of young people with severe ME/CFS. This is critical and this may need a different approach (for example, individual interviews at home) to ensure their voices are included

 

[Tilly]

Have we heard of anyone putting themselves forward and being rejected?

 

[ladycatlover]

Have we heard of anyone putting themselves forward and being rejected?

I imagine that we won't be told anything until they appoint an organisation. But I don't know. I can imagine that you're worried as a parent. I would be in your shoes too. Perhaps someone else here knows better, I'm sure they'll get back to you if they do. I'm just hoping it isn't AfME when we find out.

 

[Andy]

Received this email earlier

Dear stakeholders,

Please note that the deadline for any proposal submissions on the project involving children and young people in developing a NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome diagnosis and management is Monday 10th June at 12pm.

All the information about the project including how to submit your proposal can be found at the link below:

https://www.rcplondon.ac.uk/ngc-guideline-development

Please submit any proposals to NGC.tender@rcplondon.ac.uk.

Suggests, at least to me, that they haven't received many, if any, submissions.

 

[Esther12]

The way they've acted so far means that patient groups are (rightly) going to be wary of doing anything that could be seen as legitimising NICE's work. Maybe that's part of the problem?