PACE Participants' Newsletter and more

Dolphin

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From White: "The laboratory work [presented by Dr Chia] looked convincing, but many patients had significant gastro-intestinal symptoms and even signs, casting some doubt on the diagnoses of CFS being the correct or sole diagnosis in these patients."
White's department at Barts basically made the same assertions about GI problems in 'CFS' in response to the NICE draft Guidelines, as TomK has highlighted before (and some other stuff about wheelchair use and levels of impairment, for example, which I think is relevant to this issue).
Here are two sets of quotes - one can find other examples with the fourth link in my sig.

====================
(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.
------------

(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.
 
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My major beef is that post exertional malaise is not necessary for diagnosis. Why is White so uptight about the Canadian criteria?

Is there such response to exercise anyway? Yes we feel worse after exercise, but to suggest that it leseens over a period of one to two days does reduce down to fatigue. Ten years on from GET I have never felt a lessening that could be described as post exertional malaise. WE either have ME or we don't and the one thing that should never be undertaken is an increase in physical activity.; certainly nothing that involves the heart rate having to increase significiantly.