IiME Response


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

The document is proposed for use in the NHS in England and Wales regarding chronic fatigue syndrome / Myalgic Encephalomyelitis (CFS/ME).

Although not an original stakeholder (IiME 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. ............................

Invest in ME Response to the NICE Guidelines:

Invest in ME has reviewed the guidelines and our comments are available here

Invest in ME Response to the NICE Review of Guidelines (November 2010):

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

NICE Documents:

The official page for the NICE Guidelines on CFS/ME. Click here

Comments Made by Registered Stakeholders (including many of Invest in ME's responses), and responses from the NICE Guideline Development Group Click here

Dr Ian Gibson MP's Witness Statement to the NICE Guidelines Click here

NICE Review of Guidelines - Guideline Review Consultation Comments Table - 2011

Summary of IiME Response:

It would be easy to write something fatuous and disingenuous such as 'we believe the NICE guidelines represent an opportunity to drive forward the improvement of services for those with ME'.

Such a view would be a sell-out to people with ME and their families.

The reasons why the NICE Draft Guidelines were almost universally condemned was due to the poor quality of analysis and their lacking in ability to serve the needs and hopes of people with ME and their families. Without drastic change to the draft guidelines the NICE guidelines would have been irrelevant and, to quote Des Turner (Chair of the parliamentary APPG for ME), "unfit for purpose".

Reaction to the NICE guidelines can still be summed up as continued dismay that NICE have chosen to highlight, yet again, Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET) as the most effective forms of management (aka treatment) for ME. The emphasis still seems to be on these dangerous and unhelpful psychiatric paradigms - paradigms referred to and recommended as therapies and as treatments for ME despite ME patients and groups stating they are ineffective or harmful.

The inclusion of as wide a possible base of chronic fatigue states in the draft guidelines seems still to be prevalent and continues to do disservice to pwme.

Essential biomedical research which distinctly shows the biological nature of ME is still ignored

The credibility of NICE is again questioned by patient groups.

Please add you comments and thoughts to the NICE guidelines by sending comments to us - click here.

NICE Guidelines - Your Responses

Here we record some responses received about the National Institute for Health and Clinical Excellence (NICE) Draft Consultation Document for clinical guidelines for CFS/ME and about the Invest in ME responses -
to the Draft guidelines
and to the Official NICE guidelines.

More Information on NICE:

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

IiME's response to the original NICE draft guidelines for ME in PDF here

NICE proforma here

IiME document on CBT click here

IiME document on PACE and FINE trials which have been set up and funded by the Medical Research Council, and which also endorse psychological therapies. PACE and FINE trials

Other Relevant Documents see InfoCentre Library

Our description of Guidelines for ME

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

An article by Margaret Williams relating to the NICE document click here

NICE Guidelines - What's Next? click here

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

Last Update 03 April 2011