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by Craig Ellis, the Consumer Health Forum representative on the Working Group.
News - July 1998 | News
- May 1998
Summary of major concerns raised by CFS Health Consumers
A C.F.S. Scenario
See also the CFS Consumer Perspective
The progress of the rewriting of the CFS Guidelines has slowed somewhat since my last report (May 20, 1998) due to, what I have been told, have been “other commitments.”
As reported previously, I have been forwarding to the Co-convenor, CFS Guidelines Working Group, various suggestions for the inclusion of more CFS health consumer perspective material. To date, I have not had a firm commitment to these suggestions and have been informed that, "...it will depend on a number of things, including the nature of changes we make to the existing boxes, the available space in the document, and the philosophical policy decision which all members of the Working Group will need to discuss and agree to..."
I have continued to press the case for various, comprehensive changes to the draft guidelines in general and the method of their inclusion, in particular.
The various ways I have suggested, so far, are listed below. Whilst unable to reply to any correspondence, further suggestions would be welcomed in writing to me at the address below.
Ideas associated with "blending" CFS Health Consumer Perspective with the Guidelines (in order of preference)
I perceive that one of the limitations to the much-needed inclusion of the CFS Health Consumer Perspective has been their lack of acceptance as Level IV evidence together with a certain lack of credence given to health consumer evidence in medical guidelines. Boxed quotations outlining health consumer experience have been accepted in the current draft, but they do not allow anywhere near the richness, nor detail, that a CFS Health Consumer Perspective can provide.
I have also suggested that information not able to be blended into the Guideline Document, be included into "boxed" areas. These "boxed" areas may be of a size that is applicable to the information but also sensitive to overall space limitations. The inclusion of information in this way would assist the document to flow whilst complementing the "scientific evidence-based" material.
© Craig Ellis, 1998.
Following receipt of Draft Guideline responses, I took part in two Working Group telephone conference calls, namely on March 31 and April 9, 1998. These teleconferences allowed discussion and planning in the light of the many criticisms of, and concerns about, the Draft document.
After considering the draft guidelines document, almost paragraph by paragraph, it was resolved that Assoc. Prof. Andrew Lloyd and Assoc. Prof. Ian Hickie be requested to attend to the many referencing and other errors that have been identified in the document. Dr. Robert Loblay is to attend to the other concerns expressed in the medical and health consumer responses to the draft by rewriting/adjusting the draft accordingly. Other Working Group members will be enlisted to assist according to any special area of expertise.
I have been forwarding various suggestions for the inclusion of more CFS health consumer perspective material. To date, I have not had a firm commitment to these suggestions and have been informed that,
"...it will depend on a number of things, including the nature of changes we make to the existing boxes, the available space in the document, and the philosophical policy decision which all members of the Working Group will need to discuss and agree to..."
Meanwhile, I continue to press the case for various, comprehensive changes to the draft guidelines in general and the method of their inclusion, in the next edition, in particular.
The Guidelines, when revised, will be subjected to "focus groups" in N.S.W. and S.A. These groups will comprise representatives of the Royal Australasian College of General Practitioners whose task will be to comment, and provide feedback on the format, content and style of the document.
The process of revision is ongoing and, because of the amount of work required at this stage, MJA publication will be later than the original forecast of May.
I take this opportunity to thank all who made responses, or who contributed to the responses, to the draft Guidelines. These have been of major benefit in the revision of the Guideline Draft and, hopefully, to the final outcome.
Craig Ellis, Consumer Health Forum (Australia) Representative.
14 May 1998
© Craig Ellis, 1998
[ Contents ]
More than 200 responses were received from CFS Health Consumers in response to the Draft Clinical Practice Guidelines on the evaluation of prolonged fatigue and the diagnosis and management of CFS.
The vast majority of the responses both criticised various aspects of the Draft as well as providing valuable suggestions for improvement.
I list below, in point form, the main topics of concern and those put forward most as common concerns. While this list may not be definitive, it is certainly wide ranging and representative. Response such as that provided by Oakley, Shaw et.al., CFS Societies and many individual papers need to be studied closely for even more detail and advice.
CFS Health Consumers were generally very worried at the nature of mistakes in the first draft. Given the time and effort applied to this draft, many found it hard to believe that any future draft would be any different.
1) Comment was often made that insufficient content of a health consumer nature
was evident. The Perspective boxes, while useful and effective were found to not contain
relevant quotations for a particular section. It was note that the material which
summarised the CFS Consumer Compilation Document, known as the
2) A majority of respondents stated that the illness described in the draft did not
resonate with their own illness, suffering and experience. 3) Health Consumers were concerned at the effect of the Guidelines on their lives
- their relationship with medical practitioners, insurance companies, superannuation
payouts, Social Security payments, legal situations and disability issues etc. 4) Sleep recommendations did not fit the experience of CFS health Consumers 5) CBT/Graded Exercise therapy was not accepted by the vast majority of
respondents as being in any way applicable to the management of CFS. This coupled with a
psychological/psychiatrical approach to the therapies caused even more concerns. The
research around this topic was also questioned for validity. 6) Diagnostic Criteria: confusion was found to exist about the definition of CFS and
chronic fatigue and the seemingly interchangeable use. Definition of CFS in relation
to depression was also not understood or not accepted. 7)Notice was made of the need for more symptoms associated with CFS to be
included. Many people experience a whole range of symptoms as well as the core symptoms
and believed that medical practitioners, and others, needed to be aware of these. 8) Comments were made that the Draft Guidelines gave the impression that the illness is
psychologically based. (CBT/GAE, natural history predictors, placebo response rate
etc.) 9) Some sub-groups of people with CFS were not adequately addressed:
children/adolescents, severely ill, women, men, people in rural areas, people affected by
chemicals, "sick"environments, types of community support - all referred to in
the CFS Consumer Perspective document. 10) There was great dissatisfaction with the changes in quality of evidence ratings.
Also it was questioned why CFS Consumer Health evidence, whether by way of submission
evidence or other published evidence by highly respected authorities, could not be
admitted to Level IV evidence 11) Many submissions mentioned that MCS, food and chemical sensitivities need to
be mentioned / addressed - especially given the expertise of various Working Party members
in these areas. 12) The fluctuating / variable nature of CFS is not mentioned or addressed. This
is vital for good management and understanding. 13) The types of illness onset has not been addressed together with the fact
that good early illness management is essential for less suffering if not quicker
recovery(eg: in early stages of illness, people need to rest rather than "push
through.") 14) Negative statements (implicit and explicit) about CFS Societies/support groups
are not justified. 15) Somatisation/somatoform disorders: It is thought that people with severe CFS
(or even those "chasing a cure") may be given this diagnosis because of the
wording of the draft guidelines. 16) A collaborative approach between practitioner and the person with CFS is
needed. While the draft guidelines mention this fact early in the document , the concept
seems to lose integrity as the draft progresses. 17) Perspective boxes are often out of context or not relevant to a particular
section. It was thought that these boxes, while useful and a "powerful" witness
to people with the illness and their experiences, should not be the sole means of
expressing the illness experience. Other methods are needed such as greater inclusion of
the CFS Consumer perspective within the body of the document; a separate summary of the
CFS Consumer Perspective etc 18) There are firm requests for a second draft to be provided for public
checking in the light of the unsatisfactory first draft. 19) Management Section: The general comment was that this section was not
adequate in practice, nor especially, in light of the Project Title. There are so many
aspects of management included in the CFS Health Consumer Perspective (December,
1997) as provided by hundreds of people experienced in the illness (see ibid, Management:
meeting many needs, p11 ff.). However, either this experience has not been utilised or
material has been used from the Perspective and changed in an ineffective way (eg: FAQs,
concept of collaboration or management: a partnership (Woodward), hints for doctors and
doctors appointments/consultations, social and community support network diagram (Fig. 1),
"life changes", carers/partners, respite care, wider support services etc. Even
if the mistakes found in the management section were addressed, it is felt that the
guidelines would still be of little use to medical practitioners. There may be a need to
re-invent the management section. © Craig Ellis, 1998. [ Contents ] written by CHF Representative, Craig Ellis, with reference to
his summary of the original 80 CFS Health Consumer Submissions and the resulting
Compilation Document entitled CFS Consumer
Health Perspective, December 1997 The CFS Health Consumer-defined issues are labelled with italics. Your life was going well with seldom any illness and
days off work until gradually your body gave more and more signals of distress.
After months of doing the rounds of medical practitioners one finally
diagnosed you with an illness you knew little about. This practitioner
was so different; Informed, took time, suggested ideas for symptom amelioration,
entered into a partnership of treatment with you - apparently, they
call it collaboration. Your local GP, the only one for hundreds of kilometres, just
wouldn't take your symptoms seriously. Living in an isolated rural community you
had to travel thousands of kilometres during this process; relying on others
to assist with the driving or an occasional, uncomfortable time consuming bus trip. You are told that your illness has no known cause, no known cure,
and no known regularised management procedure. Some statistics exist about
length of illness related to age etc., but you don't really want to know at this stage.
Its' name makes a mockery of the illness and how you feel and the suffering
you have endured to this stage. However, you are given the contact number of a local
support group which you accept with appreciation, if not a sense of anxiety. You feel totally unable to work but keep trying. Your life
now consists of work and sleep in a blur of pain, dizziness, memory and concentration
problems with a range of other varying and shifting symptoms. Your family,
while supportive, cannot understand in the way you would wish. Your spouse is
anxious, upset and fearful; your children ask questions that cannot be answered. No
longer are the familiar activities possible that you all once enjoyed. You must now
pay for the domestic work you once performed easily. Your employer could no longer accommodate you and your illness.
You leave .... and grieve. Leave entitlements last six months before you are
advised to apply for Government benefits. You balk ...pride .... But what about
your family. At best, life is now confined to bed, the kitchen, the bathroom
with an occasional slow walk in the garden. You are told that there are many worse
than you! Associated complications of chronic illness begin to be noticed; weight
gain, depression, physical (un)fitness ... to name a few. Pain control and rest seem to
assist you most although other people you have met gain relief, albeit sometimes
temporary, from other medicine, traditional and "alternative." Current
research suggestions associated with CBT, sleep management and graded exercise regimes
just don't seem to resonate with your experience of coping with the illness; nor do the
majority of the current draft RACP guide-lines for the illness reflect your symptoms, how
you feel, or your methods of coping. "If only someone could "take a
snapshot" of our condition based on our experience," you think at times. After two years, with no change in symptoms, loss of employment, and
financial hardship setting in, it is time to apply for Superannuation payout -
total and permanent disability - but how. Insurance company agents and their doctors
choose evidence that suits them to keep "their" capital. The State Support
Society supplies you with advice and resource people. Why, when you are so ill must
you become part of such an adversorial approach to the granting of that which is
rightfully yours. If only there were an objective and accurate set of guidelines
for this illness which could be used as a datum point. You have since learnt a great deal about the discrimination associated
disability - age, institutional care (including hospitalisation),
insurance/compensation/employment/ employment rehabilitation. The Support Society also raised your awareness of special
needs which you might need meeting such as strong advocacy, ancillary services,
respite care, childcare, local support people/groups, and the issues surrounding
people in rural areas. You also learnt of the specific needs of men, women
and children with this illness. You had no idea of the plethora of issues
associated with your illness other than the physical. Such a case scenario is not unusual (in the knowledge that
some issues have been omitted unintentionally.) In fact over 280 submissions
received in the past 17 months from CFS health consumers reflect some of the
issues in the scenario .. and more. The issues I have highlighted in italics have usually not
been researched, do not fit in the NHMRC Level I - IV evidence (although it
could be debated that admittance to Level IV may be possible), nor do they
assume the "status" of evidence-based acceptance. But, the issues contain research questions, ideas for assistance
and for the improvement of life situations, the reduction of distress associated
with chronic illness and suggestions for medical practitioners and others
in the allied fields of medical disability. These issues reflect life experience and ideas that have
guided the lives to which they apply. In my opinion, they deserve more than
being confined to a box within the guidelines. © Craig Ellis, 1998. [ Contents ] Top | Guidelines > Australian
information BACK HOME to Canberra Fibromyalgia and Chronic Fatigue
Syndrome Page at http://www.masmith.inspired.net.au/ Moira A Smith - Canberra, Australia
A C.F.S. Scenario
last revised 3 Oct, 2004