Submissions and Comments from Invest in ME Research
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.
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
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
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
NICE - A POVERTY OF REASON Click here
IiMER Response to NICE Consultation Review
Response to NICE 10 year surveillance (2017) Click here
CORRESPONDENCE WITH NICE GUIDELINES DIRECTOR
IiMER held extensive correspondence with NICE Guidelines Director Professor Mark Baker. Click here
NICE Guidelines Development - Turning a farce into a shambles
The way that the NICE working group has been set up seems already to have tried (to some extent) to create a balance between BPS doctrine and patient requests. Click here
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
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
Sep 2021: NICE 2021 -Legitimising the Omnishambles II
A reply from the NICE CEO to IiMER's letters - and IiMER's response Click here
Oct 2021: NICE Guidelines Published
NICE has finally published the updated guidelines for ME after over two months of unnecessary delays - taking us forward to 2007. Click here