ACT: FW: Dr. Richard Grunewald (NICE CFS/ME Guidelines Panel), XMRV and a comment on "CFS/ME" experts
Tom Kindlon
From: ME/CFS and Fibromyalgia Information Exchange Forum
[mailto:CO-...@LISTSERV.NODAK.EDU] On Behalf Of Tom Kindlon
Sent: 10 October 2009 17:25
To: CO-...@LISTSERV.NODAK.EDU
Subject: [CO-CURE] ACT: Dr. Richard Grunewald (NICE CFS/ME Guidelines
Panel), XMRV and a comment on "CFS/ME" experts
As I and others have tried to point out, the CDC are at a crucial stage.
They are in the process of putting together management and treatment
guidelines; guidelines for Research, Clinical, and Pediatric Definitions;
putting together their research strategies, etc.
As I have pointed out, Dr Bill Reeves seems to be very interested in, and
influenced by, what is happening in the UK.
=============
2 quotes (again) from Dr Reeves at the May 2009 CFSAC meeting:
- ""International Workshop - Research, Clinical, and Pediatric Definitions
of CFS - I would like to try to get together by the winter of 2009. I know
the IACFS/ME is interested in this. We want to include countries such as
***UK*** that have CFS care completely integrated into their healthcare
system."
- "Dr. Reeves: An excellent comment. Our focus is obviously on the United
States.
There are three important reasons for international collaboration. One of
them I alluded
to. There are countries that have put CFS evaluation, diagnosis, and
management into
their national health systems. The ***UK*** is one of those. An
international meeting
provides the chance to learn from another government that has embraced this
illness- perhaps not to the extent that everybody would like-but is trying
to work
with it as a national health service."
==============
I thought I'd send out this quote from Dr. Richard Grunewald
===========
http://news.bbc.co.uk/1/hi/health/8298529.stm
Friday, 9 October 2009
ME virus discovery raises hopes
[..]
"Dr Richard Grunewald, a consultant neurologist at the Sheffield Teaching
Hospitals NHS Foundation Trust who is also on the panel that gives advice to
NICE on CFS, said he had reservations about the research.
He said: "The idea that all CFS can be caused by a single virus doesn't
sound plausible to most people who work in the field.
"A lot of the symptoms of CFS are not those of a viral infection."
===========
I'm appending some information that Margaret Williams collated on Dr
Grunewald.
I think people need to be aware that in the battle over the hype of GET and
CBT based on GET, it is not necessarily a case that
psychologist/psychiatrist - bad, other types of doctor - good.
I believe it's more of a case of:
Professionals who believe GET and CBT/GET are basically all that patients
need - one group (CBT School of Thought)
The rest (including some psychologists/psychiatrists) - other group
If the CDC organise workshops or international study groups just include the
first group (CBT School of Thought), that's where problems can arise.
Many of the committees that have been set up in the UK e.g. the NICE panel,
didn't have professionals on them who could challenge the people in the
first group (CBT school of Thought).
In the US, there are some doctors who are good generally but may not know
enough about the flaws about the CBT model of the illness to challenge
proponents.
We need to make sure that there are people (preferably more than just one
person, who might feel intimidated) who can challenge people of the CBT
School of Thought at the CDC workshops which are making guidelines that
could have an influence all around the world.
Tom Kindlon
=====================
http://meagenda.wordpress.com/2008/12/19/a-nice-dilemma-by-margaret-williams
-part-two/
A NICE DILEMMA? by Margaret Williams, Part Two
[..]
Consultant neurologist Dr Richard Grunewald has a special interest in the
interface between neurology and psychiatry, especially "functional"
neurological symptoms. He is associate editor of "Behavioural Neurology",
whose editors regard "behavioural neuroscience" as "exciting and expanding
fields of research". In 2005, he published a paper in the
JNNP:2005:76:307-314 on "predisposing, precipitating and perpetuating
factors" (a Wessely School phrase that permeates the NICE Guideline) and he
stressed the need for the involvement of liaison psychiatrists (Wessely is a
liaison psychiatrist). Grunewald emphasised that the term "functional" is
more acceptable to patients than the terms "psychosomatic" and "medically
unexplained". He also emphasised that "functional symptoms can be classified
as manifestations of somatoform disorders" and noted that "functional
symptoms were previously called 'hysterical' ". He went on to talk about
"feigning illness or exaggerating symptoms".
On 14th October 2006 at a Sheffield ME Group Conference organised by Mrs Ute
Elliott, Chair of the Sheffield ME Group (who was one of the three patients
on the GDG), Dr Grunewald spoke about ME. Amongst other things, he said:
"There is widespread ignorance about ME and the literature doesn't help".
That is an insupportable assertion, because there are over 4,000/5,000
peer-reviewed papers on ME/CFS. Grunewald continued: "When the NICE
Guidelines are published I hope this will be the beginning of a sea change.
ME is always the result of stress. The way that has been found most
effective is to address this with a multi-disciplinary approach including
graded activity programmes and addressing psychological issues. Some models
(of ME/CFS) are unhelpful such as the virus model. There doesn't seem to be
any doubt that for the majority of people there is not a viral trigger".
Again, this is an insupportable statement, because there is an extensive
international literature about viral involvement in ME/CFS, especially
enteroviruses. Grunewald continued: "The symptoms of ME are so physical but
I'm afraid (the questioner) will not find a physical cause. I find the
development of the NICE guidelines exciting because they represent a change
that's coming in the NHS approach".
In 2007, Grunewald published a paper in the journal Psychotherapy: Theory,
Research, Practice, Training ("Engagement in psychological treatment for
functional neurological symptoms - barriers and solutions",
2007:44:3:354-360) in which he reiterated his views about "predisposing,
precipitating and perpetuating factors" for "functional neurological
symptoms", saying such symptoms are "costly to health services and the
economy" but that "patients with functional neurological symptoms are often
hostile to the idea of psychological treatment for symptoms, which they
typically attribute to an undiscovered physical cause" (quoting Wessely
School psychiatrist Michael Sharpe) and that "it has long been recognised
that patients with a long history of chronic symptoms and entrenched support
systems reinforcing illness behaviour can be particularly difficult to
engage" because such patients "were concerned that compliance would prevent
further medical investigations which they felt were necessary". Grunewald's
solution was that these patients should receive psychotherapy (as the NICE
Guideline CG53 recommends).
Also in 2007, Grunewald published another paper extolling the virtues of
psychotherapy for people with somatoform disorders, especially for
"non-neurological functional symptoms" (in which he specifically includes
CFS), in which he concluded: ""Psychotherapy may be a cost-effective
intervention for patients presenting with functional neurological symptoms"
(J Psychosom Res 2007:63:625-632). Citing his own (2005) work, Grunewald
asserted: "It is likely that some functional neurological symptoms are
factitious or malingered"; citing Michael Sharpe (2004), he asserted:
"Patients with functional symptoms are much more likely than patients with
'neurologically explained' disorders to attribute their problems to purely
physical causes rather than to emotional or social difficulties"; citing
Simon Wessely (2002), he asserted: "Functional symptoms are costly to the
health service and to the economy".
Grunewald's view about the estimated cost-effectiveness of his favoured
psychotherapy would have endeared him to NICE: "the described therapy is
inexpensive, especially because cost savings from withdrawal of
inappropriate medical treatment were not factored into the estimation of
cost-effectiveness".
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