Below is a timeline of submissions and comments from the charity in order to follow the historic flow of NICE policies since the charity was formed.

The National Institute for Health and Care Excellence (NICE) published their document for clinical guidelines released on 22nd August 2007).
The document was proposed for use in the NHS in England and Wales regarding chronic fatigue syndrome / Myalgic Encephalomyelitis (CFS/ME).

We registered to become a stakeholder in these guidelines as soon as we could after being formed as a charity and we supplied our response to the Draft Guidelines in 2006.
The charity published a response to the full clinical guidelines in 2007.

The charity has continued to create submissions to NICE and has attempted to engage with the NICE director to promote real change and progress in these matters. In July 2017 Invest in ME Research responded to the NICE 10 year surveillance (2017) – CFS/ME.
The following year the charity had extensive correspondence with NICE Guidelines Director Professor Mark Baker and has attempted to engage with the NICE to promote real change and progress in these matters.

In 2020 the charity replied to the new draft guidelines.

In 2021 the charity also commented on the final guidelines that were planned to be published by NICE, as well as making responses to the delays in publication that NICE imposed.

The charity continues to create submissions to NICE and to comment on NICE policies towards ME.

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Invest in ME Research

NICE CAMPAIGNING

2006

Draft NICE Guidelines

Although not an original stakeholder (Invest in ME only became a charity in May 2006) we registered to become a stakeholder in these guidelines and supplied our response to the Draft Guidelines in 2006.

The National Institute for Health and Clinical Excellence (NICE) published their draft document for clinical guidelines in November 2006.

Invest in ME Comments on the 2006 Draft guidelines: Click here

2007

Full NICE Guidelines Published

The National Institute for Health and Clinical Excellence (NICE) published their document for clinical guidelines released on 22nd August 2007). Click here

The Charity's Response to NICE Guidelines

The charity published a response to the full NICE Clinical Guidelines 2007 CG53 after they were published: Click here

The Charity's Response to HSC

IiME's submission to the Health Select Committee investigating NICE Click here

2009

NICE GUIDELINES - a view from Norway

The NICE Guidelines for ME/CFS - Reasons for Rejection - a view from Norway Click here

Post-Judicial Review Comment

NICE Guidelines - What's Next? Click here

Comment from Margaret Williams

Statements of Concern about CBT/GET provided for the High Court Judicial Review of February 2009 Click here

2010

NICE Consultation Review of the guidelines

Invest in ME has submitted the following response to the NICE Consultation Review of the guidelines November 2010

2013

IiMER COMMENTS

NICE - A POVERTY OF REASON Click here

2017

IiMER Response to NICE Consultation Review

Response to NICE 10 year surveillance (2017) Click here

2018

CORRESPONDENCE WITH NICE GUIDELINES DIRECTOR

IiMER held extensive correspondence with NICE Guidelines Director Professor Mark Baker. Click here

2020

July 2020: COVID-19, NICE and ME - Keeping the Pretence Going

NICE - Statement about graded exercise therapy in the context of COVID-19. Click here

Nov 2020: Press Release from Invest in ME Research

The charity responds to the NICE press release regarding new draft guidelines Click here

Nov 2020: Request to NICE to remove GET

The charity has repeated its request from 2018 to NICE to remove GET as a recommendation immediately Click here

Dec 2020: Invest in ME Research Response to NICE Draft Guidelines for ME

Invest in ME Research submitted a response to NICE regarding NICE Draft Guidelines for Myalgic encephalomyelitis/chronic fatigue syndrome: diagnosis and management CG869 Click here

Dec 2020: NICE ACCEDE TO IiMER's REQUEST FOR ADDENDUM TO GUIDELINES - SORT OF

NICE - DENY, DELAY and ACQUIESCE - Persistence Pays Click here

2021

Aug 2021: Letter to NICE Management from Invest in ME Research

Invest in ME Research have written to the NICE CEO and NICE Guidelines director to complain about the release of the final guidelines Click here

Aug 2021: Fourteen Years

It has been fourteen years since NICE guidelines were published. A review of possible NICE guidelines 2021 developed from the Draft Guidelines 2020. Click here

Aug 2021: NICE Guidelines Development Debacle - And so it Continues

Invest in ME Research Comment: A Continuing Saga of Ineptitude - 2021 Click here

Sep 2021: NICE and transparency

A further letter to NICE CEO commenting on the lack of transparency Click here

Sep 2021: NICE 2021 - A Time to Step Back?

Open the roundtable to all or step away - clear choices for anyone representing the interests of people with ME Click here