I wrote to Nick Clegg, Deputy Prime Minister , yesterday. Here is an extract :
"Before the Election you set out the excellent Liberal Democrat position on
"The Liberal Democrats have long argued that
funding and research must be focused on the `bio-medical' factors
involved and not just simply managing the `psychological' issues.
Whilst I welcome the fact that NICE conducted an investigation into
ME/CFS, I do understand and empathise with the concerns raised about the
findings. The recommendation that patients with ME/CFS be treated using
an `Activity Management Programme' made up of Cognitive Behavioural
Therapy and Graded Exercise Therapy does not follow the World Health
Organisation guidelines which categorise ME as a neurological condition.
In failing to recognise the bio-medical problems of ME sufferers, the
NICE guidelines also fail to recognise the needs of ME sufferers.
To help address the unique challenges posed by a complex and poorly
defined condition like ME, the Liberal Democrats believe in the
establishment of an independent scientific committee to oversee all
aspects of ME research. We would also like to see the government and the
Medical Research Council work with ME sufferers and biomedical
researchers in order to achieve a proper understanding of the condition,
challenge unjust perceptions and consider the issue of research funding.
Whilst we welcome the establishing of local centres to focus on ME, we
feel the NHS is still too centralised and too unresponsive to the needs
of patients and families. We believe the special needs of those
suffering conditions like ME can be better addressed by empowering
patients and making the NHS more accountable at local level."
For the first time in many years I have a sense of hope. I am writing
to urge you to use your position in Government to help bring about
the biomedical investigations , tests, treatments , consultants and
respect for this disease, that are so desperately needed for ME
As long as ME is shackled to "fatigue" and a mental health
interpretation , without proper or adequate diagnostic criteria and
as long as psychiatrists who view ME as either non-existent or a
mental-health condition continue to advise key Government groups, ME
research and provision will be seriously undermined by this as well
as by the vested interests raised by the Gibson Parliamentary
Inquiry, but never addressed.
Please help us and all ME sufferers. Please promote the much needed
changes in attitude and practice required. My wife does not want to
die, as so many have done already, from ME.
This Election has been all about change. Change cannot come soon
enough for ME sufferers and carers like myself."
Joint Commisioning Panel for Mental Health has recently published
for commissioners of services for people with medically unexplained
symptoms, specifically listing Myalgic Encephalomyelitis as a "Functional Somatic Disorder". This
is not the first time that an incorrect reclassification has been
attempted. In October
attempt was made to have ME ‘unofficially’
reclassified, as a mental disorder in a U.K adaptation of a WHO
publication, the ‘WHO Guide to Mental Health in Primary Care’, developed by the Collaborating Centre of the Institute of
Psychiatry, London and included under the classification F48.0
After a reprimand from the WHO, an erratum was eventually issued,
acknowledging that the
anyone wishing to challenge this report, the following may be of
Encephalomyelitis (ME) has
by the World Health Organisation since
as an organic neuro…
Myalgic Encephalomyelitis, a neurological disease with multi-system dysfunction is continuing to
disappear from view, lost in a fatigue focus that does not
clinically represent the reality of this severely disabling chronic disease.
There should, you would think, be no compromise on identifying and separating Myalgic Encephalomyelitis from other conditions and recognising the
need for a full medical service with a biomedical pathway, for people with Myalgic Encephalomyelitis (ME).
This is sadly not the case and that has profound implications for those people who have ME especially the most severely affected, who are so isolated as to be almost
invisible to health services, social services and society generally, too ill to engage with them.
It is unlikely that anyone outside the situation really know what life is like for people with Severe and Very Severe ME, who
are house and or bed bound, unable to interact in a normal way and separated from ordinary life by acute environmental hy…
and Linda Crowhurst (August 8th
2013). Synopsis Paralysis is a
symptom that is rarely highlighted in the literature for ME, yet is
found amongst the most severely ill ME population and even some of
those not so severely affected. My wife has experienced it for almost
2 decades, without adequate exploration, alongside exposure to denial
and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find
out if there was anyone else with a similar experience to my wife's
or if she was a rare and very severe case. We wanted to highlight the
seriousness of this symptom and ask why it is being ignored and down
played not only by the medical profession, with its inappropriate
focus on fatigue and the psychosocial response, but also by the main
charities, none of whom, flag it up as a main symptom. This qualitative
research study indicates that there are significant others
experiencing apparently similar paralysis and that my wife is not
unique. It begs the question why…