Entry: Chronic Fatigue Syndrome / Myalgic Encephalomyelitis Monday, February 07, 2005

*Overall Verdict*
The Trust has engaged strongly in the consultative process for Stakeholders during the writing of this guideline. Our representations achieved 21 separate changes in wording together with a number of amplifications of information.
Having read the published guideline carefully, it is our opinion that, on balance, children with ME are more likely to be taken seriously and there is the potential for giving them more help with their education. Although we applaud the great effort that has been made by the Royal College and all those involved in the production of the guideline, we nevertheless do have a number of serious reservations and concerns.
The "Executive Summary and Guideline Recommendations" are likely to be what most doctors read. Many recommendations should effect an improvement for children with CFS/ME, but the recommendations on CBT and GET are very likely to prove problematic for young patients and their families.
In theory, the Recommendation that "Children and young people with CFS/ME should be considered for graded exercise or activity programmes..." just means that these therapies should be considered. In practice, it could well produce a knee-jerk referral despite the detailed discussion in the full document.
Under "Making the Diagnosis", it is worth flagging up that the guideline helpfully advises: "..unless there are immediate concerns regarding the psychological wellbeing of the patient, a detailed exploration of family dynamics or the taking of a full psychiatric/psychological history is not necessary at this point."
Nevertheless, regarding school, "poor attendance" has (even after changes to the text were made as requested) still been referred to as a psychological symptom. Absence from school may therefore continue to be misinterpreted.
This is despite helpful references to the term "Special Educational Needs" inserted into the guideline at the recommendation of the Trust's Executive Director Jane Colby FRSA, who was, in her own right, part of the Delphi Panel of experts consulted by the College before the Stakeholders consultation began.
Some months prior to the Delphi consultation, Jane also alerted the Principal Research Officer at the Royal College to the statutory guidance from the Dept for Education and Skills entitled "Access to Education for Children and Young People with Medical Needs" and explained how it would affect doctors using the new guideline. This phrase was brought into the guideline and Jane's recommendations for virtual education as a possibility for some young people with ME have also been included.
In the reference section, the Dowsett/Colby study of long-term sickness absence in schoolchildren has been included, along with two other Colby references concerning education for children with ME.
However, the guideline concerns "any child/young person up to the age of 18 referred to a paediatrician for assessment with debilitating fatigue." Although this should help to avoid cases being missed, it could also lead to incorrect labelling and this in turn could lead to the apparent success of therapies such as CBT and GET being further misinterpreted.
The responsibility on the paediatrician, as always, will be to diagnose correctly within the spectrum of conditions where debilitating "fatigue" is a symptom. Here the Clinical Algorithm (a flow-chart for management of CFS/ME) concerns us.
This flow-chart displays a box advising that where investigations are abnormal, the condition is not CFS/ME. It displays another box advising that if all results are normal, it is likely to be CFS/ME. But whether this advice is correct or not depends on the tests used. New tests are already beginning to overtake this advice - tests that are not discussed in the guideline despite our drawing attention to them.
If a doctor uses a modern test where available, such as a rapid PCR for the identification of enteroviruses, and gets a positive result, will the doctor then think he is not seeing CFS/ME? We are of the opinion that this algorithm should receive attention in the near future.
*Why have certain statements been made?*
This guideline is "evidence based". Depending on what evidence is used for reference, the result will reflect that evidence. Randomised Controlled Trials are considered more reliable evidence than, for example, empiral evidence given by patients describing their experiences.
Yet RCTs often depend, in their analysis, on patients describing their experiences! They have often not included the experiences of the people who dropped out, thus both skewing the results and disempowering these patients at a stroke.
In the Trust's publication VISION, now available online at www.tymestrust.org Linda Haines, Principal Research Officer at the Royal College said: "We hope that the guideline will lead to improved care for all children with this debilitating illness." But what illness? The difficulty posed by the broad spectrum covered by CFS (admitted to be a heterogenous condition) means that treatments cannot be and are not suitable for everyone caught under this label.
Partly as a result of recommendations by the Trust and others, the guideline does emphasise that treatments must be suitable for the individual child and that there are dangers in extrapolating from studies on other patient groups. But, in our view, it does not do so stringently enough to avoid potential pitfalls where paediatricians are insufficiently aware of the deterioration that can follow inappropriate physiotherapy and rehabilitation programmes.
In a piece specially commissioned by the Trust for VISION, Linda Haines wrote: "The guideline has been written by a group of experts who have a lot of experience of looking after young people with CFS/ME, after considering all the available research evidence."
But what is considered "research evidence"? One example of this problem came when the Trust requested that:
"A warning should be given about the potential for harm that over-zealous physiotherapy or occupational therapy can cause" but we were told: "we were unable to include this suggestion as we had no evidence on which to base such a statement."
Young people with ME do not need an RCT to know that if they place their hand on a hotplate, they get burned. Had young people and their carers been given enough opportuniity to report their experiences of physiotherapy and occupational therapy?
To state, as the Executive Summary does, that "there is no evidence for the efficacy or otherwise of pacing as an effective management strategy for children and young people with CFS/ME" is to ignore evidence from patient surveys which include people of all ages and form evidence of vital importance.
Evidence of the damage that can be caused by exercise had been offered to the group writing the guideline but this offer was not taken up. In addition, there are very experienced clinicians who can describe precisely what happens to a child with ME given over-zealous physiotherapy (temporary paralysis being just one of the effects). Sadly, one of these great clinicians is no longer alive, and others who may have made representations have perhaps had their evidence relegated to a lower level.
We are all - writers, advisers and consumers of this guideline - prisoners of the "evidence-based" dogma. As a result, the Trust's warning was not -indeed, could not be - included.
*Was sufficient time allocated for consulation?*
The guideline, finally launched on Thursday 3 February 2005 at Westminster, began overrunning its original timetable early on in the process, but the College nevertheless decided to publish almost on time. This meant the contraction of the consultative process.
We advised that the timetable be allowed to slip so that the Delphi and Stakeholder consultative processes could be given the originally allotted span of time. This was not done. We feel this is regrettable.Quality is more important than time in a matter of such importance.
*Doctor Still Knows Best?*
Sadly, there is a gulf between the kind of language that we advised and the language that has been used.
There should be an expectation on paediatrians to explain to young patients and their families that because there is no cure as such, they are free to make their own choice how to manage their illness from a number of suggestions which would be offered, or indeed, to manage it in their own way.
The language of this guideline still takes the traditional Doctor/Patient angle: "Doctor knows best." A great opportunity for a break with tradition has been missed. It would have detracted nothing from the content and would have added much. It would have helped paediatricians to engage with families, whereas only the reverse is being advised.
So, on hospital admission the recommendation reads: "The majority of children and young people with CFS/ME will not need hospital admission. However, there may be some circumstances where an admission is helpful such as, for example, for assessment or the initiation of a management plan when the expertise is not available on an outpatient basis."
Let us look at the language of this sentence: "when the expertise is not available on an outpatient basis."
Unless the parents are completely unable to look after their child, as sometimes happens in very severe cases, how is it that "expertise" can possibly be considered to be unavailable on an outpatient basis?
The expertise of the parents/carers has been completely discounted without the writer even being aware that this has been done. Such a mindset must be challenged by patient groups until doctors truly appreciate the deficiencies of this approach.
The guideline does recommend the involvement of the family at all stages of the management of this illness.
But the parent and the child are usually the experts on what the child can manage, given, as it must be repeated, that nothing is going to be curative and that the body must be supported while it heals.
January 2005
The Young ME Sufferers Trust
PO Box 4347, Stock, Ingatestone, Essex, CM4 9TE
Tel/Fax : 01245 401080       www.tymestrust.org
ME International


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