NICE DRAFT GUIDELINES for CLINICAL PRACTICE
UPDATE 8th November 2006
The National Institute for Health and Clinical
Excellence (NICE) have recently published their draft document for clinical
guidelines. The document is being developed for use in the NHS in England and
Wales regarding chronic fatigue syndrome / Myalgic Encephalomyelitis (CFS/ME).
The full document may be obtained from this
Our response to the NICE Draft Guidelines
Our stakeholder submission (via email and
using the requested NICE format
Summary of Response:
The reaction to the NICE
guidelines can be summed up as profound disappointment 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.
Psychiatric paradigms are referred to and recommended as
therapies and as treatments for ME despite ME patients and groups stating
they are ineffective or harmful.
Graded Exercise Treatment (GET), already known to be potentially harmful to
people with ME, is put forward as a therapy/treatment
GET is put forward, along with
Cognitive Behaviour Therapy (CBT), as treatments of first choice
The NICE group formulating these guidelines show a disingenuous side by
comparing the use of these treatments for ME with the use of these treatments
for cancer and diabetes and other illnesses.
Yet CBT is
not offered as first line treatments for these illnesses which NICE are
recommending here for CFS/ME.
not for sensation that IiME would like to see a lawyer added to the NICE
consultation group. The lawyer would be there to represent ME patients as
one can foresee that there will be litigation against the people making
recommendations for use of GET/CBT when a patient suffers, or dies, from
putting into practice such guidelines.
IiME believe these
Draft Guidelines should state unequivocally that it is unacceptable for
patients with ME to be subjected to “sectioning” by psychiatrists, supported
by Social Services and the Police, simply because the person has ME.
We dispute the
frequent statements characterised by this text ‘There is little
understanding of the nature of the disease ‘. There are over 4000
biomedical research papers on the illness which the NICE searches should
have seen and analysed.
The NICE guidelines do not carry a single reference to the
The document is inconsistent in a number of areas - especially
The inclusion of as wide a
possible base of chronic fatigue states in the draft guidelines is clearly
evidenced and does a disservice to pwme
Essential biomedical research
which distinctly shows the biological nature of ME is ignored
The lack of proper discussion of the
guidelines shows not only a bias to outdated and flawed information but
invalidates much of the data used to justify the proposals
The layout and format of the document is poor
The objectives of the Nice Draft Guidelines are not met
The credibility of NICE is now
Yet again ME patients seem to be
on the receiving end of another counter-productive and biased analysis.
shows little new thinking and is clearly lacking in impartial analysis of all
areas of research into ME.
Although not an original stakeholder (IiME only
became a charity in May 2006) we have nevertheless registered to become a stakeholder in these guidelines
and have supplied our response directly to NICE.
See here an important article by Margaret
Williams relating to the NICE document -
In the meantime remember our document on CBT (click
here) as well as other articles on the
PACE and FINE trials which have
been set up by the Medical Research Council, and which also endorse
Other Relevant Documents - see our
InfoCentre Library and our description of
If you have comments on this document then please write to NICE -
How to submit your comments:
- Use the comments proforma (in the NICE web site) and
return by email to
firstname.lastname@example.org or on a disk to:
National Institute for Health and Clinical Excellence
71 High Holborn
Meanwhile if any readers have any experiences please
Invest in ME -
Supporting ME Awareness