NICE outraged by ousting of pain society president
BMJ 2009; 339 doi: https://doi.org/10.1136/bmj.b3028 (Published 28 July 2009) Cite this as: BMJ 2009;339:b3028All rapid responses
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The National Institute for Health and Clinical Excellence’s (NICE)
stance against professional victimisation (1) should be universally
supported by the medical profession. In their stance, NICE stress the
robustness of their guidelines; however, no matter how robust the
processes of NICE’s guidelines are, errors will occur and it remains the
duty of the medical professional to appraise any guideline before
incorporating it into their practice.
I recently contacted NICE regarding their guidance on the use of
arteriovenous extracorporeal membrane carbon dioxide removal (2). The
original version of this guidance stated that, "In the largest case series
of 90 patients, 59% (n=53) of patients survived to be discharged from
hospital." when in fact in the case series referenced (3) only 41% of
patients survived to hospital discharge. While this has now been corrected
I have been unable to find an erratum. In addition, in the procedures
overview (4) NICE still state erroneously that in the largest case series
59% of patients survived to hospital discharge.
It is important that medical professionals are aware that NICE
guidance is not always factually correct, and that processes for the
correction of published errors are not always complete or transparent.
1 Rawlins M, Littlejohns P. NICE outraged by ousting of pain society
president. BMJ 2009; 339: b3028.
2 National Institute for Health and Clinical Excellence (NICE).
IPG250 Arteriovenous extracorporeal membrane carbon dioxide removal: Full
guidance, 2008. http://guidance.nice.org.uk/IPG250/Guidance/pdf/English
(accesses 9th August 2009).
3 Bein T, Weber F, Philipp A, Prasser C, Pfeifer M, Schmid F et al. A
new pumpless extracorporeal interventional lung assist in critical
hypoxaemia/hypercapnoea. Crit Care Med 2006; 34: 1372-77.
4 National Institute for Health and Clinical Excellence (NICE).
Arteriovenous extracorporeal membrane carbon dioxide removal (AV-ECCO2R)
(interventional procedures overview), 2007.
http://www.nice.org.uk/guidance/index.jsp?action=download&o=37671
(accesses 9th August 2009).
Competing interests:
None declared
Competing interests: No competing interests
The recent ousting of Professor Paul Watson from the British Pain
Society Presidency (BMJ 2009;339:b3028), by a selection of Society members
characterised by their allegiance to injections of therapeutic substances
into the back for non-specific low back pain, seems a desperate, ill-
targeted and rather illogical response to what must be disappointing news.
One might expect an organised and coherent representation from that group
of practitioners, and for it to be delivered within appropriate channels.
One might hope for a belated enthusiasm for undertaking the studies to
collect evidence in support of their allegiance. One might dream of
impassioned vigor in establishing collaborative teams, of passionate
clinicians and pragmatic researchers, to pursue the truth with regards to
injections of therapeutic substances into the back for non-specific low
back pain. Instead, it seems that the chosen response was an organised
and very targeted personal attack on one member of the NICE group,
implemented by exploitation of the legally binding mechanisms of the
British Pain Society. By taking this response, the Society as a whole has
been dragged down. From that they should recover, but the damage to the
instigators may be harder to overcome. As the world watches the impact of
these desperate measures unfold (indeed the world is watching), we find
ourselves asking why, for this selection of Society members, are these
such desperate times?
Competing interests:
None declared
Competing interests: No competing interests
So NICE is outraged (1). I wonder whether NICE has ever given quite
so much time and consideration to the great number of highly respected
experts that have been offended by their 'evidence-based' guidelines in
recent years. It appears to me that not agreeing with NICE's
'interpretation' of the evidence is seen by NICE as rejecting evidence
based medicine. The same argument can be used by those who disagree with
NICE's interpretation of the evidence, ie NICE are rejecting evidence
based medicine, beauty or truth is often very much in the eye of the
beholder.
It's a great shame that NICE's efforts appear not to go into
producing better guidelines but into trying to stifle criticism by
expressing their moral outrage at any disagreement with their
interpretation of the evidence. It appears that political and outside
influence have become a key factor affecting the way in which NICE
interprets scientific evidence, no wonder many people are so routinely
outraged by NICE and their guidelines.
1. Rawlins M. NICE outraged by ousting of pain society president. BMJ
2009;339:b3028
Competing interests:
Not a fan of NICE
Competing interests: No competing interests
Like the authors here, I am outraged and saddened by the
loss of the president of the British Pain Society (BPS).
However, it was not the Society that caused this but a group
of members who disagreed with the NICE guidelines. These
members, not the BPS, mounted a "sustained campaign" against
Professor Watson.
As I understand it, the BPS could not at this stage do
anything else but accept the outcome of a vote conducted
under the articles of the BPS itself. This vote was hardly a
"robust" or statistically significant result either way (a
4% majority of the votes of 23% of the membership).
Furthermore the authors can hardly say that the "BPS shows
that it does not accept evidence based medicine". Indeed is
this statement truly "Evidence Based" or just an opinion?
However, many of us find it hard to adopt all of the
"Evidence Based Guidelines" emerging from NICE, which are
based on some clinical trials that seem to have limited
relationship to the heterogeneous group of patients,
clinicians and environments that are involved in back pain.
Unfortunately these Guidelines are likely to acquire the
authority of the 10 Commandments in the hands of the PCTs.
Competing interests:
I voted for the president.
Competing interests: No competing interests
Rawlins and Littlejohns [1] say a judge recently ruled in the area of
Chronic Fatigue Syndrome (CFS) that there should be no retribution against
health experts who express their views.
However, it has become clear to ME/CFS charities that if they do not
agree with the NICE Guidelines for "CFS/ME", they risk their charity being
side-lined from, for example, the process of state-funded education
programmes as well as discussions on services. For example, at a meeting
recently organised by the Countess of Mar[2], the head of the (state-
funded) CFS/ME Clinical and Research Network Collaborative (CNRCC), Dr Esther Crawley,
communicated to experts such as Dr Charles Shepherd (medical advisor to
the ME Association) that ME charities who do not sign up to the "evidence-
based" approach, the NICE Guidelines, cannot become part of that
organisation (C Shepherd, J Colby, personal communication, 24 July 2009). Do Rawlins and Littlejohns find this acceptable?
Where does that leave somebody like Dr Shepherd when his charity
earlier this year reported that a large survey[3] they undertook gave the
following results for Graded Exercise Therapy (GET) (906 replies) Made
much worse: 33.1%; Slightly worse: 23.4%; No change: 21.4%; Improved:
18.7%; Greatly improved: 3.4%. Should somebody be forced to recommend a
treatment such as GET (which is the basis of the two treatments
recommended by NICE for "CFS/ME") when such a high proportion of people
report adverse reactions? This is not the first study to report such a
high rate of adverse reactions. For example, a survey arranged by Action
for ME which was included as part of the CMO Report on CFS/ME in 2002[4]
found that, of 1214 patients who had tried a Graded exercise therapy
programme, 50% reported being made worse by it. Many questions still
remain about treatments for CFS[5].
[1] Rawlins M, Littlejohns P. NICE outraged by ousting of pain
society president. BMJ 2009, 339, b3028.
[2] Minutes of the Forward-ME meeting held at the House of Lords on
Wednesday 8 July 2009.
http://www.forward-me.org.uk/8th%20July%202009.htm
[3] ME Association survey results. ME Essential Magazine. February
2009
[4] Independent Working Party. A report of the CFS/ME working group
to the chief medical officer. Report to the chief medical officer of an
independent working group. London: Stationery Office, 2002.
(http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/Publicati...)
[5] Kindlon TP. Chronic fatigue syndrome. Many questions remain about
treatments for CFS. BMJ. 2009 Apr 7;338:b1371. doi: 10.1136/bmj.b1371.
Competing interests:
None declared
Competing interests: No competing interests
Whilst I respect the views of Rawlins and Littlejohns (1), I am not
persuaded that all the NICE guidelines can fairly be described as
"robust". I've worked on about five drafts in the past few years and one
of these included a surprising number of factual errors and demonstrated a
distinct lack of rigour.
The guideline in question concerns the management of chronic fatigue
syndrome (CFS). During the consultation phase, there were at least two
controlled studies supporting multi-component programmes (MCPs), thus
meeting the criteria for recommendation as outlined in the Guidelines
Manual 2007. However, one of the trials had been classified under
'behavioural' interventions although it bore little resemblance to the
other studies in the category (2), the RCT on pacing had been classified
under graded exercise therapy (3) and another study had been downgraded
from showing a positive overall effect to having 'no overall effect',
although it still met the criteria for the former (4).
Since my colleagues and I first alerted NICE to these 'errors',
further studies supporting the efficacy of MCPs have been published (e.g.
5). They provide therapists with an alternative to the NICE preferred
cognitive-behaviour therapy-based programmes, all of which encourage a
graded increase in activity based on assumptions, not evidence, concerning
the role of deconditioning.
MCPs incorporate several elements of cognitive-behaviour therapy
including strategies to improve sleep and advice regarding diet, activity
management and stress reduction. However, they are more eclectic and make
no assumptions about deconditioning. For instance, graded activity is not
appropriate for 'high-functioning' patients and those with evidence of
ongoing infection (6-7). MCPs permit the practitioner to use pacing to
stabilise the condition and change to graded activity after a period of
sustained improvement. Effect size statistics for MCPs are similar to
those for CBT (4-5), but attrition rates tend to be lower (2 4) so these
programmes are likely to be more cost effective.
The response from NICE to a second request to correct the errors was
rejected as the latter were not considered "sufficiently serious". Space
does not permit me to elucidate further, but two meta-analyses, various
surveys and an independent audit have show that the outcomes related to
CBT tend to be modest and that many patients find graded activity
unhelpful (e.g. 8-9). In short, there is a clear need for additional,
evidence based therapeutic options.
One can describe the guideline for CFS in many ways, but robust it is
not.
1. Rawlins M, Littlejohns P. NICE outraged by ousting of pain society
president. BMJ 2009, 339, b3028.
2. Taylor RR, Thanawala SG, Shiraishi Y, Schoeny ME. Long-term
outcomes of an integrative rehabilitation program on quality of life: A
follow-up study. J Psychsom Res 2006;61:835-9.
3. Wallman KE, Morton AR, Goodman C, Grove R, Guilfoyle AM.
Randomised controlled trial of graded exercise in chronic fatigue
syndrome. Med J Aus 2004;180:444-48.
4. Goudsmit EM, Ho-Yen DO, Dancey, CP. Learning to cope with chronic
illness. Efficacy of a multi-component treatment for people with chronic
fatigue syndrome. Pat Educ Couns 2009, doi:10.1016/j.pec.2009.05.015.
5. Jason LA, Torres-Harding S, Friedberg F, Corradi K, Njoku MG, et
al. Non-pharmacologic interventions for CFS: A randomized trial. J Clin
Psych Med Settings 2007;14:275-96.
6. Chia JKS, Chia AY. Chronic fatigue syndrome is associated with
chronic enterovirus infection of the stomach. J Clin Pathol 2008;61:43-
8.
7. Friedberg F, Sohl S. Cognitive-behavior therapy in chronic fatigue
syndrome: is improvement related to increased physical activity? J Clin
Psychol 2009;65:423-42
8. Malouff JM, Thorsteinsson EB, Rooke SE, Bhullar N, Schutte NS.
Efficacy of cognitive behavioral therapy for chronic fatigue syndrome: a
meta-analysis. Clin Psychol Rev 2008;28: 736-45.
9. Nezu AM, Nezu CM, Lombardo ER. Cognitive-behavior therapy for
medically unexplained symptoms: a critical review of the treatment
literature. Behav Ther 2001;32:537-83.
Competing interests:
None declared
Competing interests: No competing interests
A sad day for the society and for science
As a member of the British Pain Society I am appalled by the ousting
of Paul Watson as President. I always liked the fact that the society was
made up of members from disparate professions and with varied views - this
made for excellent debate and fantastic conferences (many organised by
Paul Watson in his former role with the society). Now it appears that
varied views are not allowed.
Science is built on argument, disgreement and debate - if you
disagree with something, you make your case, you don't just 'take your
ball home'. I certainly wouldn't say that I was happy with everything
within the NICE guidelines, but that is no great surprise given that I
come to back pain from a particular perspective and with a particular
view. Indeed, the guidelines are used as a debating point with my
students. Nevertheless, the attack on the president, someone who has
given so much to the society over the years, was disgraceful and those
responsible should be ashamed of themselves, both personally and
professionally.
I voted by proxy and I do hope that my vote was counted.
Competing interests:
None declared
Competing interests: No competing interests