Dear Mr. Turner,
Inquiry on NHS service provision for people with ME
Invest in ME
have read the revised Terms of Reference of the planned APPG
made comments in November 2008 regarding the terms of reference
and are glad that some of those recommendations were acted upon.
have some concerns both in regard to the planned Inquiry and the
Terms of Reference.
Background the second paragraph discusses ME and the WHO
definition and the comments therein
underline what is wrong with this proposed inquiry.
The inquiry is entitled “NHS service provision for people with
We assume, and expect that ME does mean the World Health
Organisation classification (ICD G93.3) classification.
To state that “to use only the precise WHO classification of
M.E. above will impede access to information from the NHS”
already shows the problem and any subsequent responses from NHS
departments will undoubtedly be unreliable due to this very
It is important to use precise terminology.
Any inquiry should make it clear it is for people with ME as in
ICD 10 G93.3 and not for chronic fatigue as in ICD10 F48.
Any inquiry has to be objective and there should be no
expectations of the outcome being successful or not.
Many of the clinics mentioned as being established by the DoH
are called Chronic Fatigue Services.
this Inquiry aims to be precise it has to ensure
information being collected is not relating to chronic fatigue
major concern amongst ME patients regarding services being
provided is that there are no biomedically-led services for ME
patients in the UK.
Chronic Fatigue clinics offer CBT and GET which patient
surveys have shown to be useless at best or harmful at worst.
On the specific
areas of the inquiry we wonder whether
data will be collected from clinics that call themselves Chronic
so then that data is invalid for an inquiry discussing ME.
inquiry Terms of Reference still do not ask how much is being
spent on a biomedical approach into treating ME as opposed to
especially important as many feel that money is being wasted on
the current model of care, especially by the current CNCC
clinics which offer only therapy-led approaches to ME.
The TOR do not
ask how much is being spent on testing and ruling out other
illnesses as opposed to management advice and CBT/GET?
our previous comments from last November which have been left
There is no tie
in with the Gibson report. Would it not be more important to
investigate vested interests mentioned in the Gibson report
which are stopping biomedical research taking place or why the
substantial funding of biomedical research which the Gibson
report recommended has not materialised?
It would be
better simply to force the Secretary of State for Health to
answer why he has stated that he will not consider the
recommendations from the Gibson report and why he feels NICE
supersedes the Gibson report when almost all ME patient
organisations and charities are condemning the NICE guidelines.
Why doesn’t the
APPG pick up the initiatives from the Gibson report, which are
still valid, and force through these changes?
questions regarding the information they provide or the
treatments and interventions to be used for ME patients will
likely only elicit responses based on the NICE guidelines anyway
– and the NICE guidelines are unacceptable and have been
rejected by the majority of the ME community.
believe there is unnecessary haste in performing this inquiry
and will only divert people’s attention, resources and time –
more time lost for many with this illness and their families.
What ought to
be examined is the compete lack of funding for biomedical
research to provide a cure for this illness?
APPG’s attention should be directed to forcing through change in
government and MRC policy to allow biomedical research into ME
to be performed which, in turn, would allow acceptable services
to be developed.
Invest in ME
Charity Nr 1114035