Revision to expected publication date of the NICE Guideline for ME/CFS [GID-NG10091]

Dr Salisbury made this Freedom of Information request to National Institute for Health and Care Excellence

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Dear National Institute for Health and Care Excellence,

On 29 March 2021, the expected publication date for the NICE ME/CFS guideline [GID-NG10091] was revised from 21 April 2021 to 18 August 2021.

Stakeholders were informed via email that the justification for this delay is "the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully".

I'm therefore writing to ask the following questions:
(i) How many stakeholder responses to the draft guideline were received after the deadline on December 22 2020?
If the answer to (i) is '1 or greater';
(ii) Were all stakeholder submissions received after the consultation deadline discounted?
If the answer to (ii) is 'No';
(iii) Please list the stakeholders who submitted draft guideline comments after the deadline of December 22 2020 and whose comments will be considered and responded to by NICE.

I also request that NICE publishes all internal or external correspondence (including that with the ME/CFS Guideline Committee and individual stakeholders) between January 1 2021 and today's date (Monday 29 March 2021) regarding the decision to delay the expected publication date of this guideline, and the justification for this decision.

Yours faithfully,

Dr Dom Salisbury

National Institute for Health and Care Excellence (NICE), National Institute for Health and Care Excellence

Dear Dom

 

Our reference no: EH-314098

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your email, received into our office on 30 March 2021, in
which you asked NICE for the following information:

 

o How many stakeholder responses to the NICE draft guideline on ‘myalgic
encephalomyelitis (or encephalopathy)/chronic fatigue syndrome:
diagnosis and management’ (GID-NG10091) were received after the
deadline on December 22 2020?

If the answer to (i) is '1 or greater';

(ii) Were all stakeholder submissions received after the consultation
deadline discounted?

If the answer to (ii) is 'No';

(iii) Please list the stakeholders who submitted draft guideline comments
after the deadline of December 22 2020 and whose comments will be
considered and responded to by NICE.

 

o All internal or external correspondence (including that with  the
ME/CFS Guideline Committee and individual stakeholders) between
January 1 2021 and Monday 29 March 2021 regarding the decision to
delay the expected publication date of this guideline, and the
justification for this decision.

 

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Kind regards,

 

Victoria

 

Communications manager

National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United
Kingdom

Tel: 0300 323 0141
Web: [1]http://nice.org.uk 

 

 

 

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Dear National Institute for Health and Care Excellence (NICE),

This response is now overdue. As the request was reasonably limited in scope, and because I haven't been provided a revised timescale with justification for any possible delay, I look forward to receiving the response in the coming days.

Yours sincerely,
Dr Dom Salisbury

National Institute for Health and Care Excellence (NICE), National Institute for Health and Care Excellence

2 Attachments

Dear Dom

 

I have sent the response below to your FOI request, but unfortunately
received the attached ‘undeliverable’ message, as the zipped files that
were attached are too large for the whatdotheyknow.com email route.

 

Do you have an alternative email address that I could send the full
response to instead please?

 

Kind  regards,

 

Victoria

 

From: National Institute for Health and Care Excellence (NICE)
Sent: 30 April 2021 17:32
To: 'Dr Salisbury' <[FOI #742503 email]>
Subject: RE: Freedom of Information request - Revision to expected
publication date of the NICE Guideline for ME/CFS [GID-NG10091]

 

Dear Dom

 

Reference No: EH-314098

 

FREEDOM OF INFORMATION ACT 2000

Thank you for your Freedom of Information request, received in our office
on 30 March 2021, in which you asked NICE for the following information:

o How many stakeholder responses to the NICE draft guideline on ‘myalgic
encephalomyelitis (or encephalopathy)/chronic fatigue syndrome:
diagnosis and management’ (GID-NG10091) were received after the
deadline on December 22 2020?

If the answer to (i) is '1 or greater';

(ii) Were all stakeholder submissions received after the consultation
deadline discounted?

If the answer to (ii) is 'No';

(iii) Please list the stakeholders who submitted draft guideline comments
after the deadline of December 22 2020 and whose comments will be
considered and responded to by NICE.

 

o All internal or external correspondence (including that with the
ME/CFS Guideline Committee and individual stakeholders) between
January 1 2021 and Monday 29 March 2021 regarding the decision to
delay the expected publication date of this guideline, and the
justification for this decision.

The Freedom of Information Act relates to recorded information held by a
public authority, at the time of the request.

I am sorry for the delay in sending you our response, which was due to a
delay in our internal sign-off process.

I have repeated the individual parts of your request below, and responded
to each point in turn. 

o (i) How many stakeholder responses to the NICE draft guideline on
‘myalgic encephalomyelitis (or encephalopathy)/chronic fatigue
syndrome: diagnosis and management’ (GID-NG10091) were received after
the deadline on December 22 2020?

 

Response: 4

 

If the answer to (i) is '1 or greater';

 

(ii) Were all stakeholder submissions received after the consultation
deadline discounted?

 

Response: Yes

 

If the answer to (ii) is 'No';

(iii) Please list the stakeholders who submitted draft guideline comments
after the deadline of December 22 2020 and whose comments will be
considered and responded to by NICE.

 

Response: Not applicable

 

o All internal or external correspondence (including that with the
ME/CFS Guideline Committee and individual stakeholders) between
January 1 2021 and Monday 29 March 2021 regarding the decision to
delay the expected publication date of this guideline, and the
justification for this decision.

 

Response

 

Information held that falls under the scope of this part of your request
is attached to this email. Please note that where there are gaps in the
sequential numbering of the documents provided, the missing numbers from
the sequence are those documents that were duplicates or those that were
confirmed as not in the scope of this request following our initial data
gathering process.

 

Information has been redacted from the attached documents where it is
outside the scope of your request; for example, it relates to another
piece of guidance.

 

Some information that we hold, which falls under the scope of your
request, has been withheld as we consider that an exemption under the FOI
Act applies, and I have given details of this below.

Section 40 of the FOI Act

Some of the information you have requested, is personal data relating to
third parties, the disclosure of which would contravene one of the data
protection principles. In such circumstances sections 40(2) and (3) of the
Freedom of Information Act apply. In this case, our view is that
disclosure would breach the first data protection principle.

This states that personal data should be processed fairly and lawfully. It
is the fairness aspect of this principle, which, in our view, would be
breached by disclosure. In such circumstances, section 40 confers an
absolute exemption on disclosure. There is, therefore, no public interest
test to apply. We have therefore redacted this information from the
documents provided in our response. This information consists of the names
and contact details of third parties, or of NICE staff who are below the
level of associate director. 

If you have any questions on this response you are welcome to email me at
[1][NICE request email].

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Kind regards

 

Victoria

 

Victoria Wellings

 

Communications Manager

National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United
Kingdom

Tel: 0300 323 0141 | Fax: 0300 323 0149
Web: [3]http://nice.org.uk 

 

 

show quoted sections

Dear National Institute for Health and Care Excellence (NICE),

Hi Victoria,

Thanks for your reply. Please send files to [email address removed], or, alternatively, please make available using cloud storage such as Dropbox.

Yours sincerely,

Dr Salisbury