These posts give an idea where Peter White is coming from.
I know I have posted them in other threads before but one thread got rather heated and it was suggested they should be discussed in their own thread.
If you have sensitivies to chemicals, make sure to look at part (viii) including the references.
It's a message I sent to Co-Cure around 2 years ago.
--------
I know I have posted them in other threads before but one thread got rather heated and it was suggested they should be discussed in their own thread.
If you have sensitivies to chemicals, make sure to look at part (viii) including the references.
It's a message I sent to Co-Cure around 2 years ago.
--------
I previously highlighted some points made by the Association of
British Neurologists during the NICE process:
http://tinyurl.com/2mjgh2 i.e.
http://listserv.nodak.edu/cgi-bin/wa...E&P=R2119&I=-3
and highlighted that one can read further submissions at:
"Chronic fatigue syndrome / Myalgic encephalomyelitis: stakeholders
comments and GDG responses":
http://guidance.nice.org.uk/page.aspx?o=449805
[AOL: <a href="http://guidance.nice.org.uk/page.aspx?o=449805">Here</a>]
However this is a huge mass of information and going back and
comparing it to the original is a lot of work. So I imagine most
people will not do it.
So I thought I'd highlight some comments by St Bartholomew's Hospital
Chronic Fatigue Services. I have done this on a couple of UK lists
and people have been fascinated by what was said.
St Bartholomew's Hospital is often shortened to Barts - this is not a
derogatory abbreviation.
The Barts service is led by the psychiatrist, Prof. Peter White.
Peter White is a major person in the CFS world. He has done much work
in the US in recent years including with the CDC so I thought people
around the world might be interested in some of the points they made.
I have not put comments so people can judge the comments themselves.
Bye,
Tom
==========================
(i) On Disability aids and equipment:
[TK: A blue badge is a disabled parking badge to allow somebody park
in a disabled parking space]
Draft text:
6.3.6.8 For adults and children with moderate or severe symptoms,
provision of equipment and adaptations (for example, a wheelchair,
blue badge or stairlift) to allow individuals to improve their
independence and quality of life should be considered, if
appropriate and as part of an overall management plan.
SH St Bartholomew's Hospital Chronic Fatigue Services
69 FULL 183 6.3.6.8
"…equipment and adaptations (for
example, a wheelchair, blue badge or
stairlift)…"
We disagree with this recommendation.
Why should someone who is only
moderately disabled require any such
equipment? Where is the warning about
dependence being encouraged and
expectation of recovery being damaged
by the message that is given in this
intervention? We are in no doubt that it
is a powerful message for a therapist of
any sort to provide such aids. Our view
is that such aids should only be
considered by a multi-disciplinary
therapeutic team as a whole, and
usually in the context of providing a
temporary means for a patient to
ncrease their activity levels. An
example would be providing a wheelchair
for a bed-bound patient as part of
their active rehabilitation programme. In
our opinion, such aids should never be
seen as a permanent solution to
disability in this illness.
NICE:
We have recommended such
equipment only if appropriate, and
as part of an overall management
plan and as an aid to independence.
-----------
Another quote along these lines:
In reply to (Draft NICE text):
1.3.1.8 For adults and children with moderate or severe symptoms,
provision of equipment and adaptations (for example, a wheelchair,
blue badge or stairlift) to allow individuals to improve their
independence and quality of life should be considered, if
appropriate and as part of an overall management plan.
Barts wrote:
Equipment and aids may hinder
recovery as much as help it, and their
prescription needs to consider both
outcomes. We believe disability aids
can help a patient towards recovery if
their use encourages a widening and
increase in their own activities, on a
temporary basis, as a means of
supporting a rehabilitation
programme. They should rarely if
ever be used for patients with only
moderate disabilities.
=====================
(ii) On making information available on audio tape:
SH St Bartholomew's Hospital Chronic Fatigue Services
91 FULL 260 13
Why should anyone with concentration difficulties find it easier to
use audiovisual technology, which by your implication does not involve
reading, more than reading itself (from either a book or computer
screen)? Would it not be more effective to negotiate a simple graded
programme of reading to help such a patient improve their reading
ability, along with helping to improve their cognitive capacity
through improving sleep and mood? What might be effective advice is to
encourage the use of voice-activated software in someone who finds
typing using a keyboard physical tiring, and needs to meet a deadline
in their job or studies.
Noted and removed – we consider that the text on including cognitive
activities addresses these points.
================================
(iii) On Weight loss in CFS/ME
SH St Bartholomew's Hospital Chronic Fatigue Services
88 FULL 248 6.5.5.2
"Adults or children who experience
severe weight loss should be referred
to a dietitian for assessment, advice
and nutritional support, which in
extreme cases may include tube
feeding."
This is alarming and arguably negligent
advice, which we strongly condemn.
Any patient who experiences severe
weight loss should be referred for
appropriate assessment, not by a
dietician alone, but by an appropriate
specialist doctor (gastro-enterologist or
psychiatrist) so a diagnosis can be
made. We do not know of any reliable
or replicated evidence that severe
weight loss, in deed any weight loss at
all, is a part of CFS/ME. Whereas we
are aware of patients referred to our
service with a diagnostic label of
CFS/ME who on assessment have an
alternative diagnosis, most commonly
anorexia nervosa (sometimes
presenting atypically without a body
image disorder, which is well described
in the anorexia nervosa literature), but,
on occasion, malabsorption.
NICE
This recommendation has been
removed.
========================================
(iv) On Neuropathetic pain and Gabapentin:
Draft Text:
Gabapentin: The GDG noted that the wider survey was supportive of
gabapentin in severe CFS/ME sufferers. The GDG was uncertain why
this was the case. Because of its side effects, the GDG did not
think that it should be used for mild pain but there will be certain
individual cases when it might be considered despite a relatively
high side-effect profile. The GDG decided not to make a positive or
negative recommendation.
----------
SH St Bartholomew's Hospital Chronic Fatigue Services
87 FULL 233 1
The GDG noted the survey support of
the use of gabapentin in CFS/ME.
However this drug is licensed for
neuropathic pain. There is no evidence
that patients with CFS/ME have a
neuropathy and we would not
recommend the use of this drug,
particularly as one of its significant side
effects is sedation, without empirical
evidence for its support, which is
currently lacking. It would be surprising
if NICE gave guidance based on
anecdotal evidence, an inaccurate
indication, for a drug, which has
significant adverse effects.
NICE Response:
Noted and we have recommended
that people should be referred for
specialist pain management if
appropriate.
====================
(v) Bowel symptoms and CFS/ME:
Draft text:
6.4.5.5 Prescribing of gut anti-spasmodics (such as mebeverine,
alverine, and peppermint oil) should be considered for adults and
children with bowel symptoms, such as cramp or bloating.
SH St Bartholomew's Hospital Chronic Fatigue Services
85 FULL 229 6.4.5.5
"..gut anti-spasmodics.." are not
treatments of CFS/ME since bowel
symptoms are not part of CFS/ME. You
should make it explicit that this
treatment might be indicated for the
treatment of IBS, if present comorbidly.
Alternatively, and perhaps more wisely,
you could suggest that IBS, if present,
should be treated in the light of the best
available evidence, and refer readers to
appropriate guidance, which may or
may not include considering
antispasmodics as the treatment of
choice for "bloating", although we would
doubt it. You do mention IBS on page
233, line 12.
NICE:
We have revised this
recommendation and referred to the
NICE IBS guideline – currently in
development.
=====================
(vi) On Drug Intolerance and CFS/ME:
Draft text:
6.4.5.2 Adults and children with CFS/ME may experience greater
intolerance and more severe adverse/side effects from drug
treatment. Where appropriate, drug treatment used for symptom
control should therefore be initiated at a lower dose than in usual
clinical practice, and should be increased gradually.
SH St Bartholomew's Hospital Chronic FatigueServices
84 FULL 229 6.4.5.2
We are not aware of any reliable and
replicated evidence to support the
statement that patients with CFS/ME
are more intolerant or have more
severe adverse effects; and "more
intolerant" than whom? We do not
agree that drug treatment should be
initiated at lower dose than in usual
clinical practice. This possible myth is
repeated within the guideline at various
points, and is important since it may
make doctors more likely to prescribe
sub-therapeutic doses. If you are going
to keep this included, you should make
sure that the anecdotal level of
evidence for this is explicitly stated. We
would suggest changing to "..drug
treatment at lower doses may be
considered…."
=============================
(vii) On Recovery times:
Draft text:
6.3.6.16 When planning a programme of GET the healthcare
professional should:
• discuss with the patient ultimate goals with the patient that are
important and relevant to them. This may be, for example a 2 x 15
minutes daily brisk walk to the shop, a return to previous active
hobby such as cycling or gardening, or, if more severely affected,
sitting up in bed to eat a meal.
• recognise that it may take weeks, months, or even years to achieve
goals, and it is essential that the therapy
structure takes this pace of progress into account.
SH St Bartholomew's Hospital Chronic Fatigue Services
75 FULL 188 6.3.6.16
These goals should include recovery,
not just exercise and activity goals.
If it takes "years" to achieve goals, then
either the goals are wrong or the
therapy is wrong. What other treatment
in medicine would take years to work?
We suggest "or even years" is deleted.
If a therapy is not helping within a few
months, either the therapy or the
diagnosis or both should be reviewed
and changes considered. We suggest
that this advice is pertinent to all
treatment approaches, not just for GET.
NICE:
The statistics indicate that total
recovery is relatively rare and the
GDG felt that to include recovery as
a goal may lead to disappointment.
As the goals are patient derived
they may be long term. Interim
goals would be developed.
================================
(viii) on Multiple Chemical Sensitivity (MCS):
Draft text (this is in a section on severe CFS/ME):
"Family life may also be affected as people with severe CFS/ME are
often sensitive to sounds and smell. For example, the person may be
unable to tolerate light or cleaning products whilst they are often
unable to control their body temperature, thus impacting on the living
environment."
and
"..Those caring for an individual with severe CFS/ME professionally
need an understanding of the illness and the needs of the individual
to meet the challenges of, for example, cooking or cleaning for an
individual who is sensitive to the smell of food or of cleaning
materials or bathing an individual who finds touch painful. Therefore
proper training should be given about the condition with the
involvement of the patient for any particular problems."
SH St Bartholomew's Hospital Chronic Fatigue Services
92 FULL 261 3 +
A patient with increased sensitivity to the smell of various
chemicals may be suffering from multiple chemical sensitivity, but
you would be making a dubious assumption to state this is part of or
even characteristic of severely disabling CFS/ME. MCS is a
potentially remediable condition through a graded exposure programme
on the basis that the underlying pathophysiology is a conditioned
response. It should not be considered as a part of CFS/ME.
(See: Staudenmayer H, Binkley KE, Leznoff A, Phillips S. Idiopathic
environmental intolerance: Part 2: A causation analysis applying
Bradford Hill's criteria to the psychogenic theory. Toxicological
Reviews 2003;22:247-61.
Bornschein S, Hausteiner C, Zilker T, Forstl H. Van den Bergh O,
Devriese S, Winters W, Veulemans H, Nemery B, Eelen P, Van de
Woestijne KP. Acquiring symptoms in response to odors: a learning
perspective on multiple chemical sensitivity. Annals of the New York
Academy of Sciences 2001;933:278-90.
Otto T, Giardino ND. Pavlovian conditioning of emotional responses
to olfactory and contextual stimuli: a potential model for the
development and expression of chemical intolerance. Annals of the
New York Academy of Sciences 2001;933:291-309.)
NICE response:
This section has been removed.
====================================
(ix) Point about whether CFS/ME is an incurable chronic disease or not:
Draft text:
1.3.1.6 The objectives of the individualised programme are to:
• sustain or gradually extend, if possible, the person's physical,
emotional and cognitive capacity
• manage the physical and emotional impact of their symptoms.
SH St Bartholomew's Hospital Chronic Fatigue Services
103 NICE 18 1.3.1.6
The emphasis here would be
appropriate for someone suffering
from an incurable chronic disease,
which CFS/ME is most often not. The
aim of an individualised programme
should be to help the patient recover,
or, if this is not possible, to help the
patient improve their quality of life and
minimise disability. The expectation of
both the patient and the practitioner is
vitally important in determining
outcome, and these current aims are
too conservative, and inconsistent
with the best available evidence.
NICE Response:
The Guideline Development Group had
to balance a positive outlook with the
recognition that some people will not
recover.
=======================
(x) On liasing with employers:
Draft text:
• Healthcare professionals should be proactive in advising about
fitness for work and education, and recommend adjustments or
adaptations to work or studies to enable rehabilitation of adults and
children with CFS/ME. This includes liasing (with the person's
consent) with employers, education providers and support services e.g:
occupational health services
St Bartholomew's Hospital Chronic Fatigue Services
FULL 23 22 thru 27
Sometimes acting as an intermediary
between patient and employer may
encourage dependence rather than
fostering recovery via empowerment.
We therefore suggest adding the
word "may" on line 24 to read, "This
may include…"
It is not an easy option.
