APPG Inquiry on NHS
service provision for people with ME
ME have read the Terms of Reference of the planned APPG Inquiry as detailed at -
some concerns both in regard to the planned Inquiry and the Terms of Reference.
why this inquiry is being planned now just months before a Judicial Review of
NICE is to take place.
this will only divert people’s resources away from concentrating on the NICE
review. It would be better to await the outcome of the judicial review into
the Background to the Terms of Reference we feel that patient concerns are that
the existing CNCC clinics are offering nothing but a therapy-led service without
in-depth clinical investigations being performed.
As such they are worthless for
In the Aims of these Terms of Reference the term “encephalopathy” is used. We do
not understand why this is part of this proposed inquiry.
encephalopathy does not exist as an illness.
correct term is myalgic encephalomyelitis – as used in WHO ICD 10 G93.3. This
needs to be corrected otherwise the inquiry has an incorrect basis.
planned inquiry Terms of Reference do not ask how much is being spent on a
biomedical approach into treating ME as opposed to therapy-led approach.
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.
not ask how much is being spent on testing and ruling out other illnesses as
opposed to management advice and CBT/GET?
clear omissions for any such inquiry.
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?
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.
doesn’t the APPG pick up the initiatives from the Gibson report, which are still
valid, and force through these changes?
SHA/PCTs 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
under judicial review.
the most blindingly obvious omissions from the Terms of Reference is any
question regarding which clinical guidelines are being used to diagnose people
with ME in the first place.
omission would nullify the whole inquiry if it is not considered or asked.
misdiagnosis is one of the major problems with ME then this would have to be in
any survey and all information provided would need to be categorised by which
set/sets of guidelines are being used.
to “provide diagnostic and therapeutic options to people with M.E” is
meaningless unless the diagnostic criteria being used accompany the answers to
this inquiry now, just months before a Judicial Review of NICE is to take place,
will only divert people’s attention, resources and time – more time lost for
many with this illness and their families.
ought to be examined is the compete lack of funding for biomedical research to
provide a cure for this illness? Placing attention on coping with this illness,
on the basis of the flawed and unacceptable NICE guidelines, provides no future
for people with ME and their families who have no wish to merely accept the
Perhaps the 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.
Regarding the specific aims of
the inquiry in the Terms of Reference we have the following comments attached to
the inquiry aims –
“The inquiry will
focus on collecting data from each Strategic Health Authority (SHA)
and Primary Care Trust (PCT):
“• about the
funding they had available in 2007-2008 for caring for people with
M.E., what they will have in the budget to provide services for
people with M.E. in 2008-2009 and what funding they would need to
implement the NICE guideline”
IiME: We do not believe SHA/PCTs
should implement the NICE guidelines. With NICE about to be brought before a
judicial review it would be ludicrous to attempt to implement the NICE
guidelines in the current context. Most independent ME charities and patient
organizations have rejected the NICE guidelines. We do not feel SHAs/PCTs need
to implement NICE guidelines if the ME patient community have rejected them.
The Terms of Reference state
that it (the inquiry) will consider a number of points relating to how health
professionals treat this illness. It should specifically state that the analysis
of these services and the points mentioned in the aims section of the ToR is
"how well health
professionals in primary care, secondary care and in
provide information about the range of
interventions and symptom
management strategies available, including benefits, risks and likely side
IiME: What would be the value
of this if the healthcare staff are themselves ignorant or only providing
information based on flawed perceptions of this illness as a behavioural
A question needs to be put to
healthcare staff as to where their information comes from when advising patients
on treatments and symptom management.
“the extent to which
health professionals in primary care, secondary care and in specialist
centres/teams receive appropriate professional training in the range of
interventions and symptom management strategies available, including
benefits, risks and likely side effects”
IiME: This point is placed
within the section of analysis implied to be by patients. Yet only healthcare
staff can comment on their training.
Who defines “appropriate
professional training”? If this is including that which is offered, for example,
from Barts CFS/ME Clinic, then this is not considered satisfactory as it
revolves around treating ME as a behavioural illness.