Chronic Fatique Syndrom - Canadian Guidelines -Charles Shepherd

Author

Canadian Guidelines -Charles Shepherd

Jan van Roijen

2004-10-03, 7:14 pm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~[vbcol=seagreen]
30 September 2004
Editorship : j.van.roijen@chello.nl
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

From: Manager ME-NET <me-net@dds.nl>

Charles Shepherd about the Canadian Guidelines
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Source: Charles Shepherd
Date: 12 juli 2004

Canadian Guidelines
````````````````````````````

I don't think any reasonable person would dispute the need for all
doctors in the UK to be issued with some straightforward
guidelines on ME/CFS that cover clinical assessment,
differential diagnosis, routine and further investigation, basic
approaches to management, prognosis etc.

This is something that I certainly haven't ignored. Around 8,000
copies of the MEA purple booklet were sent out to health
professionals.

And quite a few of the 3,000+ copies of the guidelines I recently
wrote for Sussex and Kent group that have so far been
distributed have gone to doctors.

I've also approached the CMO and DoH ministers on several
occasions to try and persuade them to send out clinical
guidelines. But the answer has always been no - even with the
information contained in the 2002 CMO report.

However, the DoH do now accept the case for clinical guidelines
on ME/CFS and have consequently asked NICE to do this work.
Until this process is complete, I can't see the DoH agreeing to
sending out or endorsing anyone else's guidelines - simple fact
of life in view of what has happened so far.

Before making some specific observations on the Canadian
Guidelines (CG), could I make it clear that I believe they are an
important and very useful contribution to the literature.

However, I believe they also have some problems in relation to
UK medical opinion which need to be sorted out before they
could gain widespread acceptance....

Firstly, in their current format they are far too long and detailed.

This is perfectly OK for a doctor who is definitely interested in
the subject but speaking as one who is literally overwhelmed
with written information (1,000+ pages of journals, guidelines,
drug information, DoH circulars etc each week - not joking),
I want short, straightforward guidelines that cover all the key
points on assessment, investigation, differential diagnosis, and
drug/non-drug management - rather like the content of the
guidelines I've already referred to.

Secondly, I believe there are problems in the way the CG define
some aspects of ME/CFS for clinical purposes. For example,
the CMO report was very emphatic about the need for early
diagnosis and the fact that it is just not necessary to say that
symptoms have to be present for 6 months or more before a
diagnosis of ME/CFS can be made.

Yet the Candian clinical guidelines also include the same rule
about persistence of symptoms for 6 months or more. They are
also quite emphatic about sleep disturbance (even when some
people wake unrefreshed but have a normal sleep pattern) and
musculoskeletal pain (some people with ME/CFS experience
little or no pain; for others the pain is neuropathic in quality)
being almost compulsory features. I could go on....

Thirdly, if you draw up a three column list and compare the key
symptoms of Melvin Ramsay described ME, those in the the CG
and those in the clinical guidelines version of the London Criteria
(LC), you will see that at a basic level there isn't a great deal of
difference between CG and LC.

In fact, in some respects the LC are much nearer to Melvin's
description of ME than the CG. The LC also contains some
important clinical features that the CG omit.

Fourthly, you are not going to persuade the DoH to endorse (or
send out) guidelines which recommend complex and costly
investigations that are of very dubious value (ie antiviral pathway
testing, DHEA levels, or looking at natural killer cell activity).

Another fact of life.

Equally, there are other investigations (eg testing for adult onset
coeliac disease) that are strangely omitted from the CG yet
assessment of magnesium status is recommended as routine.

As far as research is concerned, the CG were not designed for
research purposes. Of course, there is no reason why they could
not be adapted for this purpose by those who prepared them.
But in their present form they are designed for clinical purposes.

My understanding from a very recent top level meeting is that the
MRC and those involved in the PACE trial have looked at the
CG in some detail and compared them to the LC. But they, too,
have reached the conclusion that the CG are not suitable as a
research tool - certainly in their present form.

So until the authors produce a version which is suitably modified
for research I suspect that this particular criticism is not going to
go away.

The MEA is, incidentally, in the process of preparing a summary
of our meeting relating to the PACE trial. This will include some
further information on the possible value of the CG as a research
tool.

Please remember that my overall view is that the CG are an
important and very useful contribution but they do need to have
some adjustments made if they are are going to receive any sort
of official approval here in the UK.

And there will have to be a shortened version covering the key
points for those doctors who have an allergic reaction to
guidelines that contain too much detailed information.

Charles Shepherd

NB: These comments are made in a personal capacity

~~~~~~~~~~

KEN

2004-10-03, 7:14 pm

I note the Exclusion Of Responsibility as "A MEDICAL DIRECTOR and
ADVISOR to the MEA and the ME/CFS patient community in Britain", at the
END of Dr. Shepherd's post below that both: VOIDS his responsibility
for his comments and makes false accusations and claims about the
Canadian Criteria and the London Criteria being similar to Ramsey's.

He has a valid point about the document being too long. The short
version is 30 pages (as per my hp printout of the Acrobat file), and
the FULL Version prints around 90 + pages, and also contains the
various workup sheets for a physician to use in making an accurate
diagnosis of ME.

The Canadian Criteria is published in full in the Journal of CFS;
Volume 11, November 1, 2003, and the ISSN is: <1057-3321>

This is available from: The Haworth Medical Press. The MESS Web page
has a subscription discount for orders placed through the MESS links
for the "J of CFS": which are found at the following url:
<http://cfids-cab.org/mess/melinks.htm>. The ORDERING info
is listed alphabetically therein under: JOURNAL OF CFS.

HOWEVER: where he states that the Canadian Criteria are not valid in
Britain: this is a result of the British Decision to Abandon ME and
replace it with the watered down term CFS: which Dr Shepherd is WILLING
TO WORK WITH.

Here in Canada, patient advocacy does NOT accept CFS - we USE the
term Myalgic Encephalomyelitis - and we DO correct local physicians
on the misuse of cfs to refer to this dammed disease.

What has evolved into cfs as a result of the CDC's 1994 criteria is
not ME. We know that: Shepherd knows THAT, ALSO !! He also could
have replied in a much more honest way than he did!

Its both a PITY; and an injustice to the ME Patient community on an
International level; he chose to respond "that way".

Regards:
Ken (MESS) http://cfids-cab.org/mess
mailto:m.e.s.s-@sympatico.ca
Yahoo Voice Conference: <ken_mess>

Jan van Roijen wrote:
>
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
> Send an Email for free membership
> ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
> 30 September 2004
> Editorship : j.van.roijen@chello.nl
> Outgoing mail scanned by Norton AV
> ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
>
> From: Manager ME-NET <me-net@dds.nl>
>
> Charles Shepherd about the Canadian Guidelines
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
> Source: Charles Shepherd
> Date: 12 juli 2004
>
> Canadian Guidelines
> ````````````````````````````
>
> I don't think any reasonable person would dispute the need for all
> doctors in the UK to be issued with some straightforward
> guidelines on ME/CFS that cover clinical assessment,
> differential diagnosis, routine and further investigation, basic
> approaches to management, prognosis etc.
>
> This is something that I certainly haven't ignored. Around 8,000
> copies of the MEA purple booklet were sent out to health
> professionals.
>
> And quite a few of the 3,000+ copies of the guidelines I recently
> wrote for Sussex and Kent group that have so far been
> distributed have gone to doctors.
>
> I've also approached the CMO and DoH ministers on several
> occasions to try and persuade them to send out clinical
> guidelines. But the answer has always been no - even with the
> information contained in the 2002 CMO report.
>
> However, the DoH do now accept the case for clinical guidelines
> on ME/CFS and have consequently asked NICE to do this work.
> Until this process is complete, I can't see the DoH agreeing to
> sending out or endorsing anyone else's guidelines - simple fact
> of life in view of what has happened so far.
>
> Before making some specific observations on the Canadian
> Guidelines (CG), could I make it clear that I believe they are an
> important and very useful contribution to the literature.
>
> However, I believe they also have some problems in relation to
> UK medical opinion which need to be sorted out before they
> could gain widespread acceptance....
>
> Firstly, in their current format they are far too long and detailed.
>
> This is perfectly OK for a doctor who is definitely interested in
> the subject but speaking as one who is literally overwhelmed
> with written information (1,000+ pages of journals, guidelines,
> drug information, DoH circulars etc each week - not joking),
> I want short, straightforward guidelines that cover all the key
> points on assessment, investigation, differential diagnosis, and
> drug/non-drug management - rather like the content of the
> guidelines I've already referred to.
>
> Secondly, I believe there are problems in the way the CG define
> some aspects of ME/CFS for clinical purposes. For example,
> the CMO report was very emphatic about the need for early
> diagnosis and the fact that it is just not necessary to say that
> symptoms have to be present for 6 months or more before a
> diagnosis of ME/CFS can be made.
>
> Yet the Candian clinical guidelines also include the same rule
> about persistence of symptoms for 6 months or more. They are
> also quite emphatic about sleep disturbance (even when some
> people wake unrefreshed but have a normal sleep pattern) and
> musculoskeletal pain (some people with ME/CFS experience
> little or no pain; for others the pain is neuropathic in quality)
> being almost compulsory features. I could go on....
>
> Thirdly, if you draw up a three column list and compare the key
> symptoms of Melvin Ramsay described ME, those in the the CG
> and those in the clinical guidelines version of the London Criteria
> (LC), you will see that at a basic level there isn't a great deal of
> difference between CG and LC.
>
> In fact, in some respects the LC are much nearer to Melvin's
> description of ME than the CG. The LC also contains some
> important clinical features that the CG omit.
>
> Fourthly, you are not going to persuade the DoH to endorse (or
> send out) guidelines which recommend complex and costly
> investigations that are of very dubious value (ie antiviral pathway
> testing, DHEA levels, or looking at natural killer cell activity).
>
> Another fact of life.
>
> Equally, there are other investigations (eg testing for adult onset
> coeliac disease) that are strangely omitted from the CG yet
> assessment of magnesium status is recommended as routine.
>
> As far as research is concerned, the CG were not designed for
> research purposes. Of course, there is no reason why they could
> not be adapted for this purpose by those who prepared them.
> But in their present form they are designed for clinical purposes.
>
> My understanding from a very recent top level meeting is that the
> MRC and those involved in the PACE trial have looked at the
> CG in some detail and compared them to the LC. But they, too,
> have reached the conclusion that the CG are not suitable as a
> research tool - certainly in their present form.
>
> So until the authors produce a version which is suitably modified
> for research I suspect that this particular criticism is not going to
> go away.
>
> The MEA is, incidentally, in the process of preparing a summary
> of our meeting relating to the PACE trial. This will include some
> further information on the possible value of the CG as a research
> tool.
>
> Please remember that my overall view is that the CG are an
> important and very useful contribution but they do need to have
> some adjustments made if they are are going to receive any sort
> of official approval here in the UK.
>
> And there will have to be a shortened version covering the key
> points for those doctors who have an allergic reaction to
> guidelines that contain too much detailed information.
>
> Charles Shepherd
>
> NB: These comments are made in a personal capacity
>
> ~~~~~~~~~~

Jan van Roijen

2004-10-03, 7:14 pm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
30 September 2004
Editorship : j.van.roijen@chello.nl
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

From: KEN <m.e.s.s-@sympatico.ca>

I note the exclusion of responsibility as a MEDICAL DIRECTOR
and ADVISOR at the END of Dr. Shepherd's post below that
both VOIDS his responsibility for his comments and makes
false accusations and claims about the Canadian Criteria and
the London Criteria being similar to Ramsey's.

He has a valid point about the document being too long. The
short version is 30 pages (as per my hp printout of the Acrobat
file), and the FULL Version prints around 90 + pages, and also
contains the various workup sheets for a physician to use in
making an accurate diagnosis of ME.

The Canadian Criteria is published in full in the Journal of CFS;
Volume 11, November 1, 2003, and the ISSN is: <1057-3321>

This is available from: The Haworth Medical Press. The MESS
Web page has a subscription discount for orders placed through
the MESS links for the J of CFS - which are found at the
following url: <http://cfids-cab.org/mess/melinks.htm> and the
ORDERING info is listed alphabetically therein under: JOURNAL
OF CFS.

HOWEVER: where he states that the Canadian Criteria are not
valid in Britain is a result of the British Decision to Abandon ME
and replace it with the watered down term CFS: which Dr
Shepherd is WILLING TO WORK WITH.

Here in Canada, patient advocacy does NOT accept CFS - we
USE the term Myalgic Encephalomyelitis - and we DO correct
local physicians on the misuse of cfs to refer to this dammed
disease.

What has evolved into cfs as a result of the CDC's 1994 criteria
is not ME. We know that: Shepherd knows THAT, ALSO !! He
also could have replied in a much more honest way than he did!

Its both a PITY; and an injustice to the ME Patient community on
an International level; he chose to respond "that way".

Regards:

Ken (MESS) http://cfids-cab.org/mess
mailto:m.e.s.s-@sympatico.ca
Yahoo Voice Conference: <ken_mess>

``````````````

Jan van Roijen wrote:

Help ME Circle, 30 September 2004

[vbcol=seagreen]
> Canadian Guidelines
> ````````````````````````````
>
> I don't think any reasonable person would dispute the need for all
> doctors in the UK to be issued with some straightforward
> guidelines on ME/CFS that cover clinical assessment,
> differential diagnosis, routine and further investigation, basic
> approaches to management, prognosis etc.
>
> This is something that I certainly haven't ignored. Around 8,000
> copies of the MEA purple booklet were sent out to health
> professionals.
>
> And quite a few of the 3,000+ copies of the guidelines I recently
> wrote for Sussex and Kent group that have so far been
> distributed have gone to doctors.
>
> I've also approached the CMO and DoH ministers on several
> occasions to try and persuade them to send out clinical
> guidelines. But the answer has always been no - even with the
> information contained in the 2002 CMO report.
>
> However, the DoH do now accept the case for clinical guidelines
> on ME/CFS and have consequently asked NICE to do this work.
> Until this process is complete, I can't see the DoH agreeing to
> sending out or endorsing anyone else's guidelines - simple fact
> of life in view of what has happened so far.
>
> Before making some specific observations on the Canadian
> Guidelines (CG), could I make it clear that I believe they are an
> important and very useful contribution to the literature.
>
> However, I believe they also have some problems in relation to
> UK medical opinion which need to be sorted out before they
> could gain widespread acceptance....
>
> Firstly, in their current format they are far too long and detailed.
>
> This is perfectly OK for a doctor who is definitely interested in
> the subject but speaking as one who is literally overwhelmed
> with written information (1,000+ pages of journals, guidelines,
> drug information, DoH circulars etc each week - not joking),
> I want short, straightforward guidelines that cover all the key
> points on assessment, investigation, differential diagnosis, and
> drug/non-drug management - rather like the content of the
> guidelines I've already referred to.
>
> Secondly, I believe there are problems in the way the CG define
> some aspects of ME/CFS for clinical purposes. For example,
> the CMO report was very emphatic about the need for early
> diagnosis and the fact that it is just not necessary to say that
> symptoms have to be present for 6 months or more before a
> diagnosis of ME/CFS can be made.
>
> Yet the Candian clinical guidelines also include the same rule
> about persistence of symptoms for 6 months or more. They are
> also quite emphatic about sleep disturbance (even when some
> people wake unrefreshed but have a normal sleep pattern) and
> musculoskeletal pain (some people with ME/CFS experience
> little or no pain; for others the pain is neuropathic in quality)
> being almost compulsory features. I could go on....
>
> Thirdly, if you draw up a three column list and compare the key
> symptoms of Melvin Ramsay described ME, those in the the CG
> and those in the clinical guidelines version of the London Criteria
> (LC), you will see that at a basic level there isn't a great deal of
> difference between CG and LC.
>
> In fact, in some respects the LC are much nearer to Melvin's
> description of ME than the CG. The LC also contains some
> important clinical features that the CG omit.
>
> Fourthly, you are not going to persuade the DoH to endorse (or
> send out) guidelines which recommend complex and costly
> investigations that are of very dubious value (ie antiviral pathway
> testing, DHEA levels, or looking at natural killer cell activity).
>
> Another fact of life.
>
> Equally, there are other investigations (eg testing for adult onset
> coeliac disease) that are strangely omitted from the CG yet
> assessment of magnesium status is recommended as routine.
>
> As far as research is concerned, the CG were not designed for
> research purposes. Of course, there is no reason why they could
> not be adapted for this purpose by those who prepared them.
> But in their present form they are designed for clinical purposes.
>
> My understanding from a very recent top level meeting is that the
> MRC and those involved in the PACE trial have looked at the
> CG in some detail and compared them to the LC. But they, too,
> have reached the conclusion that the CG are not suitable as a
> research tool - certainly in their present form.
>
> So until the authors produce a version which is suitably modified
> for research I suspect that this particular criticism is not going to
> go away.
>
> The MEA is, incidentally, in the process of preparing a summary
> of our meeting relating to the PACE trial. This will include some
> further information on the possible value of the CG as a research
> tool.
>
> Please remember that my overall view is that the CG are an
> important and very useful contribution but they do need to have
> some adjustments made if they are are going to receive any sort
> of official approval here in the UK.
>
> And there will have to be a shortened version covering the key
> points for those doctors who have an allergic reaction to
> guidelines that contain too much detailed information.
>
> Charles Shepherd
>
> NB: These comments are made in a personal capacity
>

~~~~~~~~~~