Peter White/Barts - comments on draft NICE guidelines - insight into their views

Dolphin

Senior Member
Messages
17,555
Likes
28,235
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 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…"
 

CJB

Senior Member
Messages
876
Likes
482
Sounds like they're totally convinced they're dealing with lazy slackers.

I wonder if they're so sure that they'd be willing to take blood transfused from a PWC.
 

Mithriel

Senior Member
Messages
688
Likes
818
Location
Scotland
I was seen by an occupational therapist in 1990. She recommended all sorts of things for me which have been a great help.

The one that made the most difference to my life was my wheelchair. I had never considered such a thing as, like most people, I thought you only got one if you were completely unable to walk whereas I could manage a few steps

She said that if the choice was between staying indoors all the time or having a wheelchair and a life what was I waiting for?

It has been a godsend. I can't believe the life people will be condemned to live if wheelchairs are disallowed.

Where is the warning about
dependence being encouraged and
expectation of recovery being damaged
by the message that is given in this
intervention?
Everyone I know who is a wheelchair user - and I know many as I was able to go to a centre for the disabled once I had my chair - has found that the wheelchair is a simple tool. It enables you to go where your legs won't take you. People use cars for exactly the same reasons.

I find it hypocritical that they demand a warning about purely hypothetical dangers (dependence and damage to expectation of recovery) neither of which have been tested, while refusing to give a warning about GET when surveys of patients consistently give a figure of about 35% being made worse.

Wheelchairs are not the same as walking. The world is designed for people to walk through so the minute I can get out my chair I will :) It is not an easy option.

Mithriel

Dr Anne MacIntyre of the ME Association offered Simon Wessely a pint of her blood. Not taken up.....
 

Mark

Senior Member
Messages
5,238
Likes
6,198
Location
Sofa, UK
If you have sensitivies to chemicals, make sure to look at part (viii) including the references.

(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.
Tom, yes I had spotted this before, in your previous post, but like the rest of this response from Bart's it's so extraordinary it seemed worth another look. I've been diagnosed with MCS, as has a friend of mine, both of us privately (and we both consider ourselves CFS also but I suppose we just preferred the term MCS as a different explanation for the same thing; CFS, in terms of who has defined it, seemed to be tied to a (spurious) psychological explanation). No GP I've spoken to has ever heard of MCS, and when asked to investigate, they don't believe in it. So it's quite amazing to me to see it pop up from nowhere in the Bart's response, and even more remarkable to see them psychologising that one away as well! I never heard that theory before, but I suppose...why should I be surprised? But if they claim to know how to remedy the condition through a 'graded exposure programme', then it's a shame they never mentioned this to any of my doctors who don't believe MCS even exists. No, hold on, now that I think of it...no it's not a shame! Perhaps all those sceptical docs were really just sheltering me from the psychologists! :D

I'm looking forward to finding more solid information on this thread. Can people point me at the best places that collate all this sort of evidence? I've seen plenty of odds and ends before, but most of them seem to be too polemical, or too scattered and poorly presented, to be useful things to point my friends at. Unless I'm mistaken, and something already exists, I get the impression that there's a need to gather this sort of information together in a public-facing website, and to present the case well.

Final point, slightly at a tangent, about the psychological explanations. As I've been digging away, trying to get to the bottom of what's wrong with the psychological approach, it seems to me that the fundamental difficulty is this: the theory of a "conditioned response" or of CFS as a psychological illness is not provable, nor falsifiable. According to Popper, a theory is not scientific unless it can be proved false. If somebody claims my illness is all in my mind, there's no way I can prove it isn't (other than by finding the physical cause). Now, fine, that physical cause (like XMRV) would be falsification of the psych theory, once it's discovered. But after the XMRV+ have been diagnosed, they will still take everybody who doesn't have XMRV and try to psychologise their illness. Anybody with an illness of unknown cause is subject to this theory. It basically says: anything we don't know about, is down to the patient's psychology. There will always be something left for the psychologists to play with, there's no way for anyone to disprove it.

Is there any fruitful line of attack there? Informed people I've spoken to say that the psychology world really doesn't carry very much weight or power within the scientific community as a whole; CFS just happens to be a little backwater they've managed to get their teeth into. So I've been wondering whether a rigorous philosophical debunking of the underlying theory, which ought to be possible, might find receptive ears in the wider scientific world, where they have to do things like repeatable experiments, provide physical evidence, that sort of thing...

And one more thing I'd like to see as part of that: what analysis have they done to investigate the effect of psychologising somebody with a real physical illness? Do they have papers examining what long-term effect it has on a sick person to suggest - to them and their family and friends and society - that they're just imagining it? XMRV will give them plenty of opportunity to study the damage they've caused...oh but hold on, don't encourage them, that'd keep them in work for decades! :eek:
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
Final point, slightly at a tangent, about the psychological explanations. As I've been digging away, trying to get to the bottom of what's wrong with the psychological approach, it seems to me that the fundamental difficulty is this: the theory of a "conditioned response" or of CFS as a psychological illness is not provable, nor falsifiable. According to Popper, a theory is not scientific unless it can be proved false. If somebody claims my illness is all in my mind, there's no way I can prove it isn't (other than by finding the physical cause). Now, fine, that physical cause (like XMRV) would be falsification of the psych theory, once it's discovered. But after the XMRV+ have been diagnosed, they will still take everybody who doesn't have XMRV and try to psychologise their illness. Anybody with an illness of unknown cause is subject to this theory. It basically says: anything we don't know about, is down to the patient's psychology. There will always be something left for the psychologists to play with, there's no way for anyone to disprove it.
You and/or others might be interested in:
"Is Psychology a Science?"
http://www.arachnoid.com/psychology/index.html - it includes psychiatry/psychological medicine to some extent in what it covers.

Might reply to some of your other points again.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
I was seen by an occupational therapist in 1990. She recommended all sorts of things for me which have been a great help.

The one that made the most difference to my life was my wheelchair. I had never considered such a thing as, like most people, I thought you only got one if you were completely unable to walk whereas I could manage a few steps

She said that if the choice was between staying indoors all the time or having a wheelchair and a life what was I waiting for?

It has been a godsend. I can't believe the life people will be condemned to live if wheelchairs are disallowed.

Where is the warning about
dependence being encouraged and
expectation of recovery being damaged
by the message that is given in this
intervention?

Everyone I know who is a wheelchair user - and I know many as I was able to go to a centre for the disabled once I had my chair - has found that the wheelchair is a simple tool. It enables you to go where your legs won't take you. People use cars for exactly the same reasons.

I find it hypocritical that they demand a warning about purely hypothetical dangers (dependence and damage to expectation of recovery) neither of which have been tested, while refusing to give a warning about GET when surveys of patients consistently give a figure of about 35% being made worse.

Wheelchairs are not the same as walking. The world is designed for people to walk through so the minute I can get out my chair I will :) It is not an easy option.

Mithriel

Dr Anne MacIntyre of the ME Association offered Simon Wessely a pint of her blood. Not taken up.....
Thanks for that, Mithriel. I think you make some good points.

One point to remember is that all that most if not the vast majority of the ME patients were ever going to be offered with the draft guidelines was a manual wheelchair. The rules for electric wheelchairs are quite strict.

With a manual wheelchair with M.E., you are not that independent. You are unlikely to have a personal assistant/similar. Pushing yourself takes energy - depending on the situation, walking the distance might take less energy than pushing yourself in a manual wheelchair.

Your house and life is unlikely to be set up as being designed for being in a wheelchair all the time e.g. inside your house.

Also like you say, people can use cars as energy saving devices.

Also with regard to wheelchairs, if people are doing an exercise programme or CBT based on graded exercise/activity, as Peter White/Barts would like people to do (and the NICE guidelines recommended), patients are supposed to avoid "boom and bust". A wheelchair can help people do this.

For example, if somebody is in hospital, you can either walk to see them (most likely overdoing it for that day) or use a wheelchair to help you.

Or on a more basic level, somebody might be able to go shopping without overdoing it if they have a wheelchair. Or do something with their kids or partner which, if they didn't do it using a wheelchair, would mean they overdid it.
 

gracenote

All shall be well . . .
Messages
1,537
Likes
76
Location
Santa Rosa, CA
thanks for asking the questions Mark

I'm looking forward to finding more solid information on this thread. Can people point me at the best places that collate all this sort of evidence? I've seen plenty of odds and ends before, but most of them seem to be too polemical, or too scattered and poorly presented, to be useful things to point my friends at. Unless I'm mistaken, and something already exists, I get the impression that there's a need to gather this sort of information together in a public-facing website, and to present the case well. . . .

And one more thing I'd like to see as part of that: what analysis have they done to investigate the effect of psychologising somebody with a real physical illness? Do they have papers examining what long-term effect it has on a sick person to suggest - to them and their family and friends and society - that they're just imagining it? XMRV will give them plenty of opportunity to study the damage they've caused...oh but hold on, don't encourage them, that'd keep them in work for decades! :eek:
Mark, thank you. You are articulating my questions very well. I hope you keep asking them.

FYI: I have a BA in Psychology and am working on my MA in Humanistic and Transpersonal Psychology. And if I could, I would get a PhD in Somatic Psychology. But . . .

I'm not a defender of what is being described. Not at all. I think it's a travesty of the highest order.

Some, maybe increasingly more, psychologist and psychiatrists do, also. (And I hope we can provide these references.) They're the ones we want on our side. When it is finally clear (and Nanacy Klimas says that it's been clear for a very long time) that we are suffering from a "real" disease, we may want some psychological help from the best psychology has to offer — or not. I hope I haven't said too much! :D :D :D
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
I'm looking forward to finding more solid information on this thread. Can people point me at the best places that collate all this sort of evidence?
Not exactly sure what you are looking for:
Personally, I think there is a lot of good information written by Dr. Ellen M. Goudsmit C.Psychol. FBPsS
Health Psychologist (HPC Registered)

http://freespace.virgin.net/david.axford/me/me.htm
http://freespace.virgin.net/david.axford/melist.htm

Perhaps you would find this of interest:
http://www.mecfs.org.au/?q=node/33

Guidelines for Psychiatrists
"Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for
Psychiatrists", Eleanor Stein (2005).
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
When it is finally clear (and Nanacy Klimas says that it's been clear for a very long time) that we are suffering from a "real" disease, we may want some psychological help from the best psychology has to offer — or not. I hope I haven't said too much! :D :D :D
Personally I have no problem with this. My main "issue" is with CBT based on GET, especially when it is being presented as all patients need to recover.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
I'm looking forward to finding more solid information on this thread. Can people point me at the best places that collate all this sort of evidence?
It is awkward to read the submissions because one then has to go and search for what was being replied to.

Back in August/Sept 2007, I spent a little while doing this so I'll save people any trouble and post some more comments in this thread. I don't claim they will all be as interesting as the 10 above:

Some points from Barts/PDW on NICE document (there may appear to be repetition but the information is often repeated in the files twice - "NICE" and "Full" guidelines). I'll put this in a quote box to make it stand out more.

In reply to:
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.

Barts wrote:

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.

----------

Severe setbacks

We are aware of no evidence that
would support division of set-back
advice depending on severity.
[Tom: But no complaints about what it said i.e. "exercise or physical
activity should be maintained if possible" etc]

--

Drugs
The advice regarding drug treatment
should be better grounded in
evidence, and consistent with
treatment of the relevant comorbid
conditions, without implying comorbid
conditions, such as neuropathic pain
and IBS are part of CFS/ME.

--

1.3.5.2 Severe weight loss is a "red flag"
event, as you suggest earlier, and
such patients should be properly
assessed not only by a dietician, but
more importantly by the relevant
specialist, such as a gastroenterologist
or psychiatrist. Weight
loss is not a part of CFS/ME at any
age.

=======
Barts/PDW suggest having testimonies from recovered patients (& suggest 1 who isn't!)

SH
St Bartholomew's Hospital Chronic Fatigue Services
39 FULL 59 10 +
We do not feel the testimonies reflect the FULL spectrum of this
disorder or the capacity for patients to recover with appropriate
evidence based treatment. Where any patient representatives on
Noted, but we have included only the testimonies that were in the
consultation version. And people should be aware that there are many
other sources of patient the GDG recovered patients? If not this
might explain why this section does not provide a comprehensive set
of views of the patient experience. We suggest you balance this
section by obtaining views of recovered patients, and we may be able
to help you with this.
See for instance:
http://news.bbc.co.uk/1/hi/health/6120514.stm

-------------
If one goes to it:
http://news.bbc.co.uk/1/hi/health/6120514.stm

[..]

"I am not only starting something new, but I am also moving away
from home. I am not 100% better now, but I am getting there."

===
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
Barts/Peter White: Recovery should only take months

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.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
Barts/Peter White objecting to mention of relaxation techniques

Barts/Peter White objecting to mention of relaxation techniques:

6.3.6.4 If a comprehensive, evidence-based programme, such as CBT or
GET, is not appropriate, the programmes or components which appear
helpful for this condition (and which are also components of GET or
CBT) which should be offered individually or more effectively in
combination are:
activity management strategies (see recommendations below)
sleep management (see recommendations below)
relaxation techniques (see recommendations below).

6.3.6.33 Relaxation techniques are appropriate for the management of
sleep problems and comorbid stress, anxiety or pain. Relaxation
techniques can also be incorporated into periods of rest.

---------------------

SH St
Bartholomew'
s Hospital
Chronic
Fatigue
Services
68 FULL 181 6.3.6.4 &
6.3.6.33
We are not aware of any evidence to
support the use of relaxation therapies
by themselves in CFS/ME. In fact this
technique has often been used as the
main component of ineffective
comparison treatment arms in several
RCTs (see: Fulcher KY & White PD.
Randomised controlled trial of graded
exercise in patients with the chronic
fatigue syndrome. BMJ 1997;314:1647-
52. And: Deale A et al. Cognitive
behavior therapy for chronic fatigue
syndrome: a randomized controlled
trial. Am J Psychiatry
1997;154:408-414.) Why, therefore, is
an ineffective therapy included? We
suggest this is omitted, unless it is
clearly qualified by its indication as an
aid to sleep, anxiolysis, et cetera, as is
done well in 6.3.6.33.


6.3.6.4 cross refers to 6.3.6.33.

-----------
Final
Relaxation
Relaxation techniques appropriate to the person with CFS/ME should be
offered for the management of pain, sleep problems and comorbid stress
or anxiety. There are a number of different relaxation techniques
(such as guided visualisation or breathing techniques) that can be
incorporated into rest periods. [1.4.2.6]
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
Barts/Peter White: want GET suggested for severe; etc

(not so exciting perhaps)

Barts/Peter White: want GET suggested for severe; etc

6.3.6.14 Adults with mild or moderate CFS/ME should be offered a
programme that includes planned increases in duration of physical
activity/exercise followed by increases in intensity leading to
aerobic exercise (that is, exercise which increases the pulse rate)
such as GET.

SH St Bartholomew's Hospital Chronic Fatigue Services
74 FULL 188 6.3.6.14
"Adults with mild or moderate CFS/ME
should be offered a programme that
includes planned increases in duration
of physical activity/exercise followed by
increases in intensity leading to aerobic
exercise (that is, exercise which
increases the pulse rate) such as GET."
We have already mentioned the
omission of severely affected from this
recommendation. We suggest a
clarification, by adding "and, once
achieved," between the words
"exercise" and "followed". This will
make sure that intensity is not
increased until adequate duration is
accomplished.

[Tom: I think it also gives the impression it will definitely happen. "If and
when" or something like it would be better]

The published RCTs
suggest that it is the exposure to
physical exercise that is the essence of
efficacy, rather than a training effect,
which would follow an increase in the
intensity of GET.
Incidentally we could not find a
definition of exercise in the guidelines,
which would help to demystify it.
Exercise is defined as "activity requiring
physical effort" (Oxford Dictionary of
English. 2nd edition, A Soanes, A
Stevenson (eds), 2003. Oxford
University Press, ISBN 0-19-8613474).



We have made substantive changes
to these recommendations.

Noted and added.

We have made the use of the term
exercise clearer.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
Barts/PDW don't want a separate section for the severely affected patients

Barts/PDW don't want a separate section for the severely affected patients

SH St Bartholomew's Hospital Chronic Fatigue Services
80 FULL 200 6.3.6.37
We do not know any evidence that
would support different strategies for
severely disabled patients, and believe
that singling out this group implies that
the illness may behave differently in
these patients, which is not the case to
our knowledge.

GDG:
Noted and revised.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
Barts/PDW seem desperate to say CBT/other behavioural treatments (i.e. GET) can be curative. This is one of the reasons I feel we can be sure that Peter White wrote the submission - notice his name amongst the names of Dutch researchers - nobody else from the Barts service was involved in the Dutch study (which had a very dubious definition for full recovery).

SH St Bartholomew's Hospital Chronic Fatigue Services

82 FULL 203 1– 2 "The GDG did not regard CBT or other
behavioural treatments as curative or
directed at the underlying disease
process, which remains unknown."
Treatments in medicine can cure or aid
recovery in the absence of knowing the
underlying disease process. The five
year study by Deale and colleagues, to
which you refer in this section showed
that a quarter of patients regarded
themselves as recovered five years
after a course of individual CBT. With
Dutch colleagues, we have just finished
a follow up study of individual CBT,
which has corroborated these findings

(Knoop H, Bleijenberg G, Gielissen
MFM, van der Meer JWM, White PD. Is
a FULL recovery possible after
cognitive behavioural therapy for
chronic fatigue syndrome?
Psychotherapeutics and
Psychosomatics (in press). Paper
available in confidence if required) In
this open study we found that 23% of
patients referred for individual CBT met
conservative criteria for recovery soon
after completing therapy. The figure
was even higher in the absence of a
medial comorbid condition, such as
compensated hypothyroidism.

When these data are added to the likely
heterogeneity of CFS/ME ……

(See these four papers:
Vollmer-Conna U, Aslakson E, White
PD. An empirical delineation of the
heterogeneity of chronic unexplained
fatigue. Pharmacogenomics
2006;7(3):355-364.

Aslakson E, Vollmer-Conna U, White
PD. The validity of an empirical
delineation of heterogeneity in chronic
unexplained fatigue.
Pharmacogenomics 2006;7(3):365-373.

Carmel L, Efroni S, White PD, Aslakson
E, Vollmer-Conna U, Rajeevan MS.
Gene expression profile of empirically
delineated classes of unexplained
chronic fatigue. Pharmacogenomics
2006;7(3):375-386.

Smith AK, White PD, Aslakson E,
Vollmer-Conna U, Rajeevan MS.
Polymorphisms in genes regulating
HPA axis associated with empirically
delineated classes of unexplained
chronic fatigue. Pharmacogenomics
2006;7(3):387-394.),

…. which you briefly mention at the
beginning, then a more optimistic note
seems appropriate, since we believe it
more likely that some patients do
recover with both CBT and GET. The
Deale and Knoop studies merely reflect
our clinical experience. This is
important information to share with
patients and their carers, since the
influence of expectation on treatment
outcome is well established within
medicine as a whole.

---------------
Noted. This reflects the discussions
and considerations of the GDG
during the process. However, there
was much ongoing discussion of
this point, and we have revised the
descriptions and recommendations
on these therapies.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
PDW/Barts: desperately trying to get their way (=GET & CBT) with the severe PWMEs

PDW/Barts: desperately trying to get their way (=GET & CBT) with the severe PWMEs

SH
St Bartholomew's Hospital Chronic Fatigue Services
90
FULL
258
1 +

"..It is curious that the guidelines support an intervention for
which there is little evidence beyond common sense, while being
cautious about interventions for which at least there is replicated
evidence in patients suffering from the same illness, albeit with
less disability. When one then considers the positive results from
the open studies of helping patients with severe disability with CBT
and GET adapted for their disability (all referenced above), the
guidance as it stands seems even more idiosyncratic. And then you
stress the "great care" required in providing any helpful
intervention for such patients. It is enough to put off any self-
respecting GMC/RCN fearing healthcare professional in trying to help
patients with CFS/ME.."

Full quote:

The guideline has left out what we would regard as the most
important intervention in the severely disabled. That is a thorough
biopsychosocial assessment. It is unsurprising that severely
disabled people, whatever their diagnosis, are more likely than the
less disabled, to suffer from co-morbid conditions, such as sleep
and mood disorders, and have social problems as a consequence of
their disability. Perhaps even more importantly than this, we
sometimes find that the most severely disabled do not suffer from
CFS/ME at all, but suffer under a misdiagnosis. No wonder they are disabled.

So accurate diagnosis is the sine qua non to the effective management
of such patients. The appropriate interventions follow from such an
assessment, which may involve more than one member of the MDT, but
which must include a consultant medical practitioner's opinion.

The guidance for severely affected patients is all about activity
management and mentions CBT and GET almost in passing ("may be
suitable for some …. patients"). It is curious that the guidelines
support an intervention for which there is little evidence beyond
common sense, while being cautious about interventions for which at
least there is replicated evidence in patients suffering from the
same illness, albeit with less disability. When one then considers
the positive results from the open studies of helping patients with
severe disability with CBT and GET adapted for their disability (all
referenced above), the guidance as it stands seems even more
idiosyncratic. And then you stress the "great care" required in
providing any helpful intervention for such patients. It is enough
to put off any self-respecting GMC/RCN fearing healthcare
professional in trying to help patients with CFS/ME. Is this really
what you wish to convey?

GDG
The guideline development group did discuss this issue at length and
the recommendation has been revised to indicate that it should draw
on the principles of CBT and GET.

-------------
This is what they were replying to:

7.3.1.1 Adults and children who are severely affected should be able
to access the same diagnostic and therapeutic options as those who
are not severely affected, as appropriate.

7.3.1.2 As they may have cognitive difficulties, adults or children
with severe symptoms may find it useful to have a summary record of
every consultation for them to refer to.

7.3.1.3 Adults and children who are severely affected should be
offered an individually tailored programme based on activity
management which may be delivered at home (and/or by telephone if
appropriate).

7.3.1.4 Activity management should be the core therapeutic strategy
but elements of CBT and GET may be suitable for some adults and
children.

7.3.1.5 Great care must be taken in devising the programme to ensure
that it is set at the right level for the adult or child, taking
into account the severity of the illness. The programme needs to be
reviewed regularly and frequently.

7.3.1.6 Adults and children who are severely affected may need to
access, at various times, community services such as nursing,
physiotherapy, psychology and occupational therapy (ref NSF long
term conditions). The input of various professionals should be
coordinated by a named professional and those involved in care need
to be trained in the management of CFS/ME. (4.3.6.5)

7.3.1.7 The majority of adults and children with CFS/ME will not
need hospital admission. However, there may be circumstances when an
admission CFS/ME: full guideline DRAFT (September 2006) Page 258 of 269
Draft for Consultation is helpful. This may be when, for example, assessment of a management plan and investigations would require frequent visits to
the hospital or the impact of travel would be detrimental to the
adult or child's condition.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
(Junk?) Don't expect gentleness from Barts in physical examinations (?)

This is in the severe ME section.

SH St Bartholomew's Hospital Chronic Fatigue Services
93 FULL 262 3 and Generally in this section

The use of adverbs detracts from this section, particularly when
you
suggest that the pain a patient feels is incredible.


NICE
This section has been removed.

Draft
7.5 Additional information related to Chapter 5 - Making a
diagnosis

7.5.1 Investigations
As with any individual suspected of having CFS/ME, diagnosis is a
process of excluding other conditions. It is a complex process due
to the diversity of symptoms and may require many investigations
to
rule out other diagnoses. [Note: the patient should be reassured
that this is normal] If tests are being conducted in an outpatient
clinic, the individual will need a place to rest. Alternatively a
short stay in hospital, whilst tests are conducted, may minimise
the
strain on them.
CFS/ME: full guideline DRAFT (September 2006) Page 261 of 269
Draft for Consultation

It is also important for health care professionals to recognise
that
people who are severely affected often have skin which is
extremely
sensitive, and therefore (line 3 starts here) contact during an
examination may be incredibly painful. (line 3 ends here)
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
Think that's it.

As I say, I don't claim the ones after the first set of 10 are as interesting.

But reading them together showed me the pattern of Peter White's thoughts.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
Sounds like they're totally convinced they're dealing with lazy slackers.
Yes, reading the points at the time, it made me think it was very like the advice one might give to very overweight people (who didn't have a biological reason for being overweight).
 

Mark

Senior Member
Messages
5,238
Likes
6,198
Location
Sofa, UK
Thanks for all the links and info Tom. It's all relevant and on the topics I'm interested in, but I needed to be clearer about what I'm looking for. I realise it perhaps goes beyond the brief of this thread, but again I don't know where else to put it other than in response to our conversation. I don't have much ever so time to go into it all now, but I'll attempt a quick overview...

I'm looking for a site I can point all my friends and contacts and family to, that takes a robust position on (in particular but not exclusively) the role of psychology in the history of CFS, and presents some simple top-line arguments (like 'CFS has been under-researched', 'CFS has been psychologised' etc) and lets people drill down to the evidence. A bunch of juicy quotes to inspire sympathy and outrage, some simple facts to back it all up. A mixture of verifiable and factual information, together with a really solid critique of what's wrong.

Everything I've seen so far has been in-depth articles and publications, which only dedicated campaigners and people with an intellectual interest are ever going to read. I'm looking for something with integrity, passion, and a bit of class, that can present the case to the 'man in the street'.

So in that context, the Barts info you presented would end up being cut down to one or two very short quotes, in the context of a wider case. The detail could be there to drill down to, but never overwhelming until people get down to that level - staying as simple as possible at the top level: just the headlines.

Another thing that would be really powerful would be a big long series of loads and loads of CFSers speaking for 10-30s each, summing up their experience. One person saying "CFS destroyed my life" sounds like exaggeration to many. Hundreds of people all saying the same thing starts to look more like a believable pattern.

Finally, I think there's a tough balance to be struck but I feel there's a difficulty presenting hard-hitting material without going over the top. The best example I can think of is the luminescent-feeling videos. I feel hesitant about critiquing them because I myself love them to bits, as I'm sure many here do. But I'd also love to see an edited version, in a more sober tone but with the same punch. To put it as simply as possible: there's a classic 2-parter which has some references along the lines of 'nazi psychologists' in it. I'd dearly love to send the rest of those youtubes to all my friends, but I know for sure that the references to nazis are going to turn off everyone I know so much that the whole thing will do more harm than good. I think I could convert the lot of them with these videos if only the nazi references weren't in there - and yes, I get the analogy, I don't think it's even terribly unreasonable when you lay it all out and know the history, but it's just not saleable. I'm worried people will think I want to neuter the whole thing, but I really think if some of the material I've seen could just have the more extreme bits removed, and be presented in a more matter-of-fact way, the facts would speak for themselves. Basically what I'm saying is: the case itself is strong enough as it is: there's no need to shout about it, it's more powerful if stated more quietly. Let people feel the outrage for themselves.

Hope that's clear; I'm outta here now for a couple of days at least :mad: but I'll check back as soon as I can.