Chief Medical Officer's Working Group on CFS/ME
Children's Sub-Group - Briefing No 1 - March 1999
Children's Sub-Group - Briefing No 2 - June 1999
Children's Sub-Group - Briefing No 4 - September 1999
Children's Sub-Group - Briefing No 5 - November 1999
Children's Sub-Group - Briefing No 7 - February 2000
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Children's Sub-Group - Briefing No 1 - March 1999
Terms of Reference: To review management and practice in the field of CFS/ME with the aim
of providing best practice guidance for professionals, patients and carers to improve the
quality of care and treatment for people with CFS/ME
At its first, very positive, wide-ranging and constructive meeting, the Children's
Sub-Group both mirrored the discussion of the Key Group a fortnight earlier and focused on
those issues specifically affecting children and young people. The Sub-Group also agreed
that its remit made it desirable to include a parent as an extra member, and to invite as
participating observers, a social services representative, an educational psychologist and
other experts from time to time as needed.
1. Key Working Principles:
o As with the key group, the sub-group intends to distribute information
widely about its work, via regular post-meeting Briefings.
o To be effective, the sub-group must operate in an atmosphere of mutual
respect towards members with differing views, and aim to maximise the degree of consensus
which it can achieve.
o Smaller 'focus' groups, which may invite in outside expertise, will be
set up to work on particular issues e.g. CBT, educational priorities, support for
families.
o To capture a wide range of views from those most directly affected,
there will be a 'sounding board' event in the autumn for parents and children.
o Some research finding needs to be earmarked for children's issues
2. The End Product:
o A reliable document which will stand the test of time and lead to a
consistent and effective model of care. Because it is specific to children, it will need
to ensure that health, educational and social service issues are all incorporated in an
integrated fashion.
3. The labelling of CFS/ME as a psychiatric disorder
The Group had discussed the following issues: whether CFS/ME is a physical or psychiatric
disorder or has both aspects; why it is frequently diagnosed as psychiatric when other
unpredictable chronic diseases are not; whether it is positively being diagnosed as a
psychiatric disorder or by exclusion because of a hierarchy of diagnosis, under which
illnesses without obvious and clear physical signs are least likely to be diagnosed as
physical; the possible need for a differential diagnosis to establish whether the fatigue
associated with CFS/ME is due to a psychiatric or physical disorder; the stigma associated
with psychiatric illness which leads to resistance to psychiatric diagnosis even where
this is appropriate; the adverse effect on securing social security benefits if a
psychiatric diagnosis is given; the need for humility, open mindedness and lack of
dogmatic position-taking in the face of current uncertainties
4. Scope of Work:
Below are the wide range of potential issues for consideration which the Group identified.
This will be formulated into a work programme to be carried out in the coming eighteen
months:
o Diagnosis in children including problems around delay and lack of
expertise
o The social context i.e. problems arising because of disbelief about
the reality of the illness by professionals,
family, friends, the education system,
such problems being compounded by the frequent inability of children to
express the nature of their illness and
symptoms.
o Management: It is important to ask whether any intervention which is
presently made is actually at all effective? Specific issues to be addressed include
medication levels; the suitability of CBT and graded exercise for children; lack of
informed consent to treatment; how to enable children to engage in self management.
o Service provision including the role of community paediatricians, the
relationship between paediatrics and
psychiatry and the value of a collaborative approach in achieving an appropriate diagnosis
and a fully integrated model of
care.
o Childhood development including problems around adolescence, the
impact on families of a child with CFS/ME
o Education including missed schooling, home tuition, flexible
schooling, problems arising from cognitive
disfunction, adapting solutions to be
suit each individual child's needs.
o Legal issues especially child protection, school non attendance laws,
special needs entitlement and informed
consent to treatment.
o State Benefits: are families receiving their entitlements? Any
specific problems around benefits targeted to children?
3. Future meetings
Arrangements are being made for early discussion of the following three issues
o developing specific diagnostic criteria for children, and
o problems around child protection law
o organising the parents' and children's 'sounding board event
Please note: To avoid repetition, this Briefing has not reproduced debate which featured
at the Key Group first meeting. It should therefore be read in conjunction with the
Briefing issued after the first Key Group Meeting.
Members of the information Group contributing to this Briefings Judy Acreman Rachel Lvnds.
Harvey Marcovich Naomi Wayne
Contact Point: Dr Leslev Cooper, Secretary to the Working Group, c/o Action for ME, 4
Deans Court. St Paul's Churchvard. London EC4V 5AA
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Chief Medical Officer's Working Group on CFS/ME
Children's Sub-Group - Briefing No2 - June1999
Terms of Reference: To review management and practice in the field of CFS/ME with the aim
of providing best practice guidance for professionals, patients and carers to improve the
quality of care and treatment for people with CFS/ME
This Briefing provides an overview of the second meeting of the CMO Working Group
-Children's Sub-Group, held on 21 April 1999. New members and observers were: G Holmes,
parent of a child with CFS/ME, Tony Crouch from the Association of Directors of Social
Services and Dr Helen Muhiudeen, Northampton Health Authority.
1. Diagnostic Criteria - discussion introduced by Dr Alan Franklin and
Dr Nigel Speight The following issues arose:
i. The importance to children and their families of being given a
diagnosis
ii. Problems associated with the two popular case definitions - CDC 1994
and Oxford criteria -
(a) they give a high prominence to fatigue, which may not be the most
prominent symptom for many children,
(b) possible suggestions in the Oxford criteria of psychiatric illness,
(c) the adult requirement to have symptoms for six months - too long for
children,
(d) the requirement for patients to fall under 50% functioning before
they are included,
(e) insufficient acknowledgment given to post-exertional or delayed
fatigue, which is very characteristic
There was also discussion about:
a) the difference between clinical and research diagnostic criteria,
b) the need to take a full history, the amount of time full history
taking required, and problems of finding sufficient time within the constraints of the
NHS;
c) the possibility of children suffering from CFS/ME and other illnesses
simultaneously; d) identifying or excluding problems such as major depression, anxiety
disorder, school
phobia, Munchausen's Syndrome by Proxy, child abuse, secondary gain; the relative
importance and different roles of GPs, paediatricians, psychiatrists, nurses;
e) the value of a team approach;
I) experiences of bad practice and of disbelief in CFS/ME as a physical
illness;
g) the importance of using criteria which are comprehensible to children
and reflect the way they feel about and describe their illness.
2. Child Protection Issues - discussion introduced by Dr Speight
Dr Speight described several cases where families whose child had CFS/ME had extremely
problematic experiences with Social Services. Issues he raised included: pressure on
children to attend school; the mandatory involvement of a child psychiatrist/rejection of
the paediatrician; a frequency of diagnosing Munchausen's Syndrome by Proxy, which
amounted to an 'epidemic'.
Further issues considered in the ensuing discussion were:
a) that some families are very skilled at hiding abuse, and also that
the way parents handle physical illness can influence the way the child copes with it, and
although most parents are well adjusted, some are mentally ill themselves and do make
things worse for their child;
b) the importance of listening to the way children report their
experience of the illness and respecting children's autonomy;
c) the possibility of supporting children via some form of 'children's
advocate';
d) the apparent increasing involvement, actual or threatened, of the
courts in disputed cases, and the inappropriateness of expecting a judge to choose between
different medical views where there is genuine uncertainty and/or disagreement among
medical professionals as to how to treat child patients;
e) the difficulty in child protection cases for social workers, who are
nominally the lead professionals, in taking an independent position from medical
professionals;
f) the role of community paediatricians, who may be brought into
involvement in child CFS/ME cases without actually seeing the child in question.
It was agreed to try to identify some medical specialists who hold strongly to differing
views about treatment and management who would be willing to address the Group.
3. Other Business
a) A sounding board event for parents & children on Wed. 27 Oct.
Group to do preparatory work: Jane Colby, Jill Moss, Rachel Lynds. To report to next
Children's meeting.
b) All Parliamentary Group to hold meeting in ME Awareness Week - Judith
Waterman and Rachel Lynds to speak on behalf of Children's Sub Group about work of the
Group.
c) Benefits and CFS/ME - work being undertaken by Key Group - request
for input by Children's Sub-Group. Information/comments to go to N Wayne who is
coordinating.
4. Future meetings
Issues for discussion as soon as possible:
a) Developing specific diagnostic criteria for children, and
b) Problems around child protection law
ContactPoint: DrLesley Cooper. Secretary to the Working Group. P0 Box
5463, Wivenhoe C07 9AF
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Children's Sub-Group - Briefing No 4 - September 1999
Terms of Reference: To review management and practice in the field of CFS/ME with the aim
of providing best practice guidance for professionals, patients and carers to improve the
quality of care and treatment for people with CFS/ME
This Briefing provides an overview of the fourth meeting of the CMO Working Group
-Children's Sub-Group, held on 11 August1999.
1. Reports:
o October Children 's Sounding Board Event: To enable children/young
people with CFS/ME and their parents to set out their needs. Representation from all main
ME young people's groups
o Diagnostic Criteria and Procedures: A sub-group is now examining
diagnosis (Tony Cleare, Tony Pinching, Nigel Hunt (chair), Roma Grant, Naomi Wayne, Lesley
Cooper and Harvey Marcovitch). Once sufficient work done, a draft will go to Key and
Children's Groups and then out for wider consultation.
o AYME Conference: This conference, held annually, is primarily for
young people with CFS/ME, as a forum for them to share experience. Judith Waterman, Chair
of the Children's Sub-Group consulted with parents at the conference about what they hoped
would come from the Working Group. The responses were:
o An effective diagnostic tool.
o National guidelines for all health professionals.
o National guidelines for LEAs. Areas to improve on were: home tuition,
flexibility in arrangements of tutorials for children, training for SENCOs.
o Patient pathways to be made clear - linkages from GP to secondary care
and other agencies.
o Free access to specialist units.
o Partnership between agencies
o Empowerment for young people - for them to be listened to, not
bullied.
o Acknowledgment by all involved that they may not have all the answers
o Psychiatrists not to assume that they know all there is to know about
CFS/ME.
2. Project Plan: Possible future work was identified as follows:
Patient and Family Experience: using material from the AYME conference and the coming
Sounding Board Event
o Severe Cases: Nigel Speight to write short paper identifying key
issues here.
o Research and Science:
o Systematic review. An interim report expected by February 2000 and a
final report by July, although it might take longer.
o The Projected Research study to be undertaken by the Royal College of
Paediatrics and Child Health. Harvey Marcovitch reported that the College had been funded
by the Lottery over three years to examine prevalence of ME/CFS in children and young
people, identify the social and cultural characteristics of any patterns of prevalence,
examine how and when it is being diagnosed and managed and how beliefs affect treatment
This work would continue after the conclusion of the Working Group, but information about
prevalence ought to be available beforehand.
o Gaps in Research. The Development Group would look at commissioning a
research project possibly as a preliminary study, possibly on the health beliefs of
professionals.
o Management: Two forms of treatment were added: allergy and alternative
medicine. The work on management would be two pronged - as well as the systematic review,
various professionals would be invited to speak to the Children's Group. It was felt that
the final product should acknowledge the controversy over management and treatment.
o Education: see later. Diagnosis - see earlier
o Child protection: The issues to be discussed with the relevant
Government Departments.. A sub-group would be formed which including advisors from outside
the Working Group.
3. Diagnosis Paper
The draft produced by the Diagnosis Group was very much in line with the earlier document
produced by members of the Children's Sub-Group. At present a separate section on children
was not necessary - points relating specifically to children could be interpolated where
relevant.
4. Education- Preliminary Discussion: key issues identified for further
consideration:
o Multi agency panels
o Statementing - SEN
o Code of Practice
o School attendance - length of day, flexibility
o Home tuition
o Over 16s
o The importance of receiving a diagnosis - LEAs can not do anything
without this.
o Role of community paediatricians/school health services/health
visitors
o Resources
o Empowerment of pupils /students
Expert participation from LEAs, schools and health authorities to be invited. Also a
community paediatrician, a school nurse and an educational psychologist being sought to
join the Group.
6. Plans for Future Meetings
o October meeting: (a) Whole Children's Group to consider Diagnosis
paper. (b) Next draft of project plan. (c) Half-day on education issues.
o December meeting: Day on psychiatry coordinated by Professor Garralda
o Following Group meeting - March. Before that there would be meetings
of small sub-groups - dates to be decided at October meeting.
Members of the Information Group contributing to this Briefing: Harvey Marcovitch, Naomi
Wayne
Contact point Dr Lesley Cooper, Secretary to the Working Group, PC Box
5463, Wivenhoe C07 9TG
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Children's Sub-Group - Briefing No 5 - November 1999
Terms of Reference: To review management and practice in the field of CFS/ME with the aim
of providing best practice guidance for professionals, patients and carers to improve the
quality of care and treatment for people with
CFS/ME
This Briefing provides an overview of the fifth meeting of the CMO Working Group -
Children's Sub-Group, held on 13 October 1999.
1. Educational issues
The meeting welcomed five educational experts: Pat Griffiths, DfEE, (responsible for
Education of Sick Children); Richard Painter, DfEE, (Pupil's Health and Safety); Chris
Purser, (National Association of Head Teachers); Steve Bynam, (Assistant Director of
Education, Luton EA); Heather Frost, (National Association for the Education of Sick
Children). As the visitors were specialists in education, several Group members provided a
CFS/ME scene-setting background.
a) Harvey Marcovitch, consultant paediatrician, explained that: there
were differences in nomenclature (with patients generally calling the illness ME, while
most doctors prefer CFS); CFS/ME is likely to be the single commonest cause of long term
absence from school, with consequent disruption and loss of education; some children could
be ill for several years and even remain seriously disabled; there was uncertainty about
cause, there was no specific treatment that had been proved to alter its course and very
varying views about the illness among medical professionals; there were major problems
maintaining children's education, partly because of the symptoms of the condition (e.g.
extreme fatigue, concentration and language problems etc), partly because of difficulties
in securing a diagnosis and partly because schools have problems understanding and
adapting to the condition
b) Rachel Lynds who has CFS/ME, identified three broad stages of educational need in
children with CFS/ME - when they are
o severely ill, so that education is on a back burner.
o a bit better, so can cope with limited home tuition..
o 60% - 70% recovered and could probably handle part time education with
support
c) Judith Waterman, chair, explained that the Group had spent a year 'superscoping' and
identifying areas where they felt advice could be helpful in making services more
effective. The interface between education and CFS/ME was particularly important. It was
also always crucial that everyone listen to the young people and children themselves.
Young people and educational experts needed to work in partnership. Hopefully advice could
be developed as a collaborative product with the DfEE, to go on to the 'Wired For Health'
website.
d) Jane Colby, Child Services Officer for Action for ME, identified key difficulties in
the area inc. -children being wrongly characterised as suffering from mere tiredness or as
school refusers; inadequate views about support needed (e.g. keeping children back a year
inappropriately, not separating out problems of lack of social contact/lack of education;
failure to understand the importance of children conserving energy, lack of special exam
arrangements. Children with CFSIME need to be seen both as children who are sick and as
having special educational needs).
e) Jill Moss, Director of AYME, emphasised the importance of children receiving education
linked to their needs. In particular, it was essential to achieve a more flexible approach
than that widely found. She had had recent experience of a new awareness in some LEAs.
Matters raised in discussion included:
o Home tuition - who was the best kind of teacher to deliver home
tuition, what kind of training was needed, how tuition could be delivered, the need for a
policy regarding the relationship between school and home tutor, the variety of practices
followed by different LEAs.
o The need for a health/education partnership, perhaps via a specific
link person e.g. the school nurse, health visitor or GP. However, there were problems in
achieving partnerships, because of the different ways departments are structured, funded
and operate. If good practice guidance is developed, it needs to be principle-based and
structure free.
o Resource issues inc. conflict between resource availability/parental
expectation especially re statementing, the role of 'parent partnership officers' in
helping to resolve such conflicts
o Low incidence illness: The possibility of the DfEE running some pilot
projects with LEAs to improve education provision for children with low incidence
illnesses, including CFS/ME.
o The Over 16s: the need for DfEE guidance to include this group.
o Other miscellaneous matters including: menial health services for
children, the specific needs of mildly affected children, the effect on the education of
children in the private sector.
Matters discussed for taking the work forward included:
o The current review of guidance regarding the education of sick
children generally (which would of course include children with CFS/ME) and DfEE Circular
1294. The Department is hoping to set up a working group to include members of LEAs and
teachers. There should then be mutual exchange of guidance between the DfEE's Working
Group and the CMO Children's Group. Any agreed guidance would go onto the Web via
SPECTRUM.
o Ways of raising awareness of CFS/ME and ensuring the appropriate
involvement of all relevant agencies, including information in home/school contracts and
in school prospectuses.
o Linking with current DfEE debate re new structures & arrangements
for young people over 16
o Utilising the mechanism of a 'ihemed' Ofsted inspection (which had
been found to be a very effective way of extending good practice). In this area an
inspection commissioned by the DfEE to examine educational provision for sick children
could be helpful in identifying both good and bad practice and raising the issue on the
policy agenda.
It was agreed an education sub-group of the Children's Group was needed, including some
out-side educational advisors, and if possible, specialist DoH input to achieve a joint
approach. This sub-group would work on preliminary guidance which could be discussed with
the relevant parties. The sub-group would be established after some preparatory work (see
below).
2. Report on Progress of Working Group - Key and Children's Groups
o Education issues: The preparatory work described above to be commenced
following the Sounding Board Event on the 29 Oct. Judith Waterman also requested all
Children's Group members who have written papers or reports on relevant educational issues
to send them to Naomi Wayne for her to prepare a key issues summary to be used by the
education sub-group.
o Psychiatric issues: These will be the subject of the last Children's
Group meeting this year.
o Year 2000 sees the work move into a different phase, with small groups
carrying out specific and very concrete projects before the next full meeting which will
be, at the earliest, April (with the actual date likely to be related to the stage reached
by the Systematic Review).
o The Diagnosis Group (inc. Judith Waterman, Harvey Marcovitch and Helen
Muhuideen from the Children's Group, and Allen Hutchinson and Aileen McIntosh from the Key
Group) meets on 22 Oct. to start work on turning the draft diagnosis paper into
appropriate guidance format.
o User and Clinicians Perspectives: The final Working Group report will
read across three perspectives - the Systematic review of evidence regarding management of
the condition, the views of patients and carers and the experience of clinicians. Both of
the latter need to be assembled in a rigorous fashion, using strict and appropriate
methodologies, so the material can then be utilised in guidance format.
o Developing Guidance - Links with the Key Group: Judith Waterman now
co-chairs the Key Group meetings, to facilitate Allen Hutchinson' s involvement in the
work of the Group in the actual production of guidance. This also strengthens the link
between the two Groups.
o Nomenclature: It was noted that while this was important for many
people, there were problems about taking a position on it at this time - it would pre-empt
other Working Group activity, and it was an international matter where unilateral decision
taking was not possible.
o Examples of other guidance: The guidance leaflet on low back pain
would be sent to the members of the Children's Group so people could see what such
guidance looks like.
3. Severely Affected Children & Young People - Nigel Speight
Dr Speight noted the following: even in severe cases recovery rates are good (up to
70-80%); it's important to overcome isolation by putting the severely affected in touch
with those who have recovered; problems arise from lack of a diagnosis; possible medical
complications for those who are bedbound (e.g. deep vein thrombosis and muscle wasting);
controversies over management ('active' management versus letting the illness run its
course); the importance of trying to keep the number of professionals in each case to a
minimum; the serious emotional effects of the illness on all the parties involved -
patients, families and professionals; positive support, and regular home visits, possibly
by paediatric nurses is beneficial; the suitability of such cases for research.
4. Future Work:
o Meeting with Chief Medical Officer: Allen Hutchinson and Judith
Waterman to meet on Oct. 21 with the CMO to report on progress, discuss resources, the
project plan and what the end document would look like. JW to report at the next
Children's Group meeting. The project plan would be circulated as a draft for comments
sometime after the meeting with the CMO.
o Benefits: Work continues on this. Naomi Wayne requested that any
material on experience of the benefits system on the part of children with CFS/ME and
their families be sent to her.
o User Event: Structure & methodology has been worked out for the
Oct 29 Sounding Board event. Funding for another user-based event to be sought in next
year's budget.
o The Child Protection Sub-Group to meet once a suitable date is found.
Note: Judith Waterman advised the Group that Panorama was making a
programme on children with CFS/ME and had asked to film that day's Children's Group
meeting. While it was not possible for the Group to make any comment or statement to the
programme, it seemed acceptable to permit filming of the Group working, which would be
used as a visual backdrop in the programme. The Group was filmed at work in the afternoon
of the meeting.
Members of the Information Group contributing to this Briefing. Judy Acreman, Rachel
Lynds, Harvey Marcovich, Naomi Wayne
Contact Point: Dr Lesley Cooper, Secretary to the Working Group, P0 Box 5463, Wivenhoe C07
9TG
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Chief Medical Officer's Working Group onCFS/ME
Children 's Sub-Group - Briefing No 7 - February 2000
Terms of Reference: To review management and practice in the field of CFS/ME with the aim
of providing best practice guidance for professionals, patients and carers to improve the
quality of care and treatment for people with CFS/ME
An overview of the seventh meeting of the Children's Sub-Group held on Dec. 8 1999.
1. PSYCHIATRIC ISSUES were considered by a range of speakers with a psychiatric or
clinical psychology background who work with children with CFS/ME
a) Dr Margaret Thompson, senior lecturer in child and adolescent
psychiatry, Dr Josie Titcombe, consultant child psychiatrist, Dr Alison Sankey, senior
registrar in child psychiatry, all from the Burseldon House Unit at Southampton Hospital:
Burseldon House Unit is a twelve bedded facility open Monday to Friday and containing a
small school. It caters for a variety of conditions, but there are no children in it with
severe psychiatric problems. In a video of case studies, patients and parents described
their previous difficulty obtaining a diagnosis, the lack of knowledge about the illness,
the many different professionals they had seen, the tests undergone and their fear and
worry. All reported that after endless uncertainty, they were relieved to obtain a
diagnosis of CFS/ME.
Days are very carefully tailored to each individual, according to their pace of recovery.
Formal schooling is mixed with rest, physiotherapy, creative activity and individual time
with a clinical specialist for treatment like counselling or cognitive behavioral therapy.
Each patient's programme is reviewed weekly or fortnightly. Periods of active engagement
are gradually built up. All families have free access to various professionals.
With its shared care ethos, patients may be admitted under either a child psychiatrist or
paediatrician. Patients and parents are viewed as important team members. The most
important feature is their combined handling of the real physical aspects to the illness
plus any psychological problems that may be making it harder for patients to get better.
Most patients see an improvement. They must still stick to the regime after leaving and
may have relapses or feel tired, but now know how to work with the illness. They learn to
put themselves first e.g. not to finish a school essay if it is making them ill. Lastly,
patients and parents can keep in touch with the Unit for advice/support after they leave.
b) Dr Trudie Chalder, senior lecturer in the Department of Psychological
Medicine at Kings College Hospital works with children over eleven who are often severely
ill, with some having been absent from school partly or fully for several years. She
outlined the following issues:
o Prognosis for CFS/ME in children: Better than adults - about 75%
improve over a two year period without treatment. With appropriate care, good outcome can
be achieved in most cases. Several single case studies & case series describe how CBT
plus working with the family can alleviate symptoms/disability. There are no Randomised
Controlled Trials confirming efficacy, but a study is currently underway at King's.
o Why children get CFS/ME: No one really knows - often several factors
seem associated, including big life changes like going to a new school, working hard at
exam time. Clinical experience shows that a viral or other physical illness can trigger
it.
o Why CFS/ME persists /consequences of inactivity (somewhat analogous to
other isolating circumstances e.g. unemployment, other chronic illnesses preventing work)
- Inconsistency Doing a lot when symptoms lessen & resting when
symptoms worsen
- Lack of fitness: When activity is resumed after prolonged periods of
inactivity, muscles will hurt and the body will feel weak.
- Being afraid of making things worse: Happens for many reasons e.g.
mixed messages from health professionals about treatment. Thus patients may first be told
nothing can be done, then that they should exercise the fatigue away. Also previous
attempts at increasing activity may have resulted in symptoms worsening.
- Symptom focusing: Research in various illnesses has shown that
thinking about illness in a particular way may worsen the long-term outcome.
- Feeling frustrated and/or low: For example, through being at a loss
what to do about the CFS/ME; not knowing how long it will last or why it is happening.
- Loss of confidence: From not doing things regularly. Going back to
school, catching up after years of school absence or worry about losing contact with
friends.
- Absence of support & appropriate advice: Many families are not
given appropriate GP support, a positive diagnosis of CFS /ME or specific advice about how
to cope.
o long term aims of family focused interventions (could be months -
sometimes years):
To encourage the patient to return to school / college where possible (for both
educational and social reasons); increase the patient's confidence in relation to social
and school activities; facilitate the process of separation in older adolescents
o How to start treatment
- Build relationship with the family - listen to their story. Discuss fears and past
experiences. Make clear a genuine belief in the reality of the physical symptoms. Explain
what is known about CFS/ME in children. Challenge therapeutic nihilism -that nothing can
be done. Explain there are many pragmatic solutions, even without knowing the cause - and
shift focus from cause to symptom management as in other illnesses. (We may not know what
causes heart disease in an individual but it doesn't stop treatment helping). Explain what
will happen and why.
- Avoid physical/psychological discussions - the symptoms are real and have physiological
basis (even if not well understood). Regardless of cause, we know our thoughts and
behaviour can affect severity of symptoms and disability long term
- Make an individual assessment. Establish self monitoring - a diary of
activities and sleep patterns. Agree long, medium and short term goals.
o Pacing: Stabilise first. Only then start graded increase in activities
(indeed, reduce activities if patient is overactive.) Start very gradual reduction in rest
and establish sleep routine. Identify 'unhelpful' thoughts e.g. those concerning the
nature of the symptoms/illness, the rehabilitation programme, worries about school or
exams.
Encourage patient to develop alternative ways of viewing the situation. This is not about
right and wrong - merely teaching people to problem solve and think laterally.
o Offering a Rationale
- Use three systems model to explain physiological, cognitive and
behavioural links and how changing one will have 'knock on' effect on the others. So in
mature onset diabetes, altering behaviour (diet & exercise) & health perceptions
(about amount of control one has over the illness) will alleviate symptoms i.e. control
blood sugar.
- Distinguish between triggering and maintaining factors. E.g. in
diabetes having a genetic predisposition may contribute to obese individual developing the
disease, but management may consist entirely of dietary and other lifestyle changes.
- Explain the effects of rest in an acute and chronic condition - In an
acute illness (early stage), such as severe flu, rest can be helpful. However, prolonged
rest is rarely helpful in chronic (long lasting) conditions such as arthritis and back
pain.
- Explain how graded activity works - gradual and measured activity
increase in disabled person over long period, produces greater feeling of control and this
will be accompanied by physiological changes.
- Finally: Emphasise treatment is collaborative & rehabilitative,
expect patient to be healthily sceptical. View as an 'experiment'
o Planning everyday activity and rest: Establish baseline - keep diary -
don't ask for change or increase activity levels at the start - simply look for
inconsistencies. Negotiate goals based on current activity levels. Spread activity/rest
evenly through the day. Key to success is consistency and structure. Increase activity
levels & reduce rest slowly if person wants to be able to do more. NOTE that this is
not an exercise programme, but everyday activity, ranging from sitting up in bed, to
getting a job
o Warning: Aim to break association between symptoms and stopping
activity - if activity is cut when symptoms are experienced, symptoms will gain increasing
control. This may require patients to be brave - but they usually are when supported by a
therapist.
Be prepared for: several weeks before overall fatigue levels reduce, possible temporary
(usually limited) symptom worsening with each activity increase, symptoms waxing and
waning anyway (but if handled properly, more waning than waxing). But note: no evidence of
permanent physical damage. Lastly, experience has shown that success seems more likely
with people who are least psychologically ill.
o Sleep management Keep sleep diary. Reduce daytime sleep/rest. Stick to
routine bed/up time. Use stimulus control if awake at night - get up and do something -
read, listen to music. Return to bed when sleepy or after half an hour, but still stick to
routine of bed/up time. Have 'worry time' at least two hours before bed - identify
problems, write them down, develop action plan to tackle and return to action plan if
necessary
o Relapse Prevention: Offer ongoing support. Anticipate setbacks.
Identify potential triggers (e.g. viral infections, exams). Discuss coping strategies.
In conclusion: A pilot evaluation study of Dr Chalder's work found 16 out of 25 children
returned to school full time, four were still in treatment, four dropped out and one was
unsuitable (for reasons largely unconnected with the illness). It was concluded that older
children could benefit from CBT, which includes the family in the process. There is also a
need to work with the school and any home tutor throughout
C) Professor Elena Garralda of the Academic Unit of Child &
Adolescent Psychiatry, Imperial College School of Medicine, felt it was helpful to bring
psychiatric thinking into the discussion and compare CFS/ME with other conditions:
Children in general often feel tired. CFS/ME symptoms - headaches, low energy and sore
muscles are very common in adolescence. Low energy is also a very common symptom of child
psychiatric disorders, particularly emotional disorders. The definition of major
depressive disorders symptoms include: loss of energy - shared with CFS/ME, somatic
symptoms of children with psychiatric disorders. In anxiety disorders many symptoms are
physical. Thus, physical symptoms are part of psychiatric and emotional disorders.
Professor Garralda's team studied 25 children presenting at a paediatric/psychiatric
clinic with fatigue as the prominent symptom, to see if they fulfilled CFS/ME criteria.
60% were bedridden, 84% did not see friends, 56% experienced strain on family, and 68% did
not attend school. Average time off school was three terms, average illness length 17
months. By contrast, in a separate study of children who were severely handicapped with
juvenile arthritis, mean time off school was only 10 days.
42% CFS/ME children had psychiatric disorders compared to 20% healthy controls. Results
from this and other work comparing children/adolescents with CFS/ME and with juvenile
arthritis indicate more psychological distress in CFS/ME children, suggesting psychiatric
disorder here is unlikely to be simply a consequence of chronic illness. CFS/ME seems to
have some common vulnerability factors with emotional disorders.
However, the most common symptoms, are different from those of anxiety disorders. Other
aspects also differentiate CFS/ME from depressed subjects, such as the sudden onset of
CFS/ME, the fact that the majority start with a viral illness and that 75% become ill in
the autumn term. The age at the start of the illness is commonly eleven years old, when a
child has moved to secondary school.
Looking at personality traits, the study found many CFS/ME adolescents had very strong
personality features, e.g. more conscientious, vulnerable and labile. This was a predictor
of outcome - children with these strong personality features were less likely to have
recovered. However, their self-concept did not predict recovery.
The study found no more hypochondriac beliefs and concerns in CFS/ME children than
controls, except that those with CFS/ME had more 'disease conviction'. Most parents
thought the condition was brought on by biological factors but half thought there were
also psychological maintaining factors. The study concluded that these patients' recovery
related to their parents' beliefs - those whose parents thought it a 'mixed' illness
recovered better than those who thought it organic only.
CFS/ME patients and healthy controls were also asked how tired they were normally supposed
to be (on a 1-10 scale with 10 as most tired). CFS/ME patients answered '1' and the
healthy adolescents answered '3-4'. It may be therefore that CFS/ME patients had
unrealistically high aspirations.
Discussion: The question of what tiredness meant was discussed, as was the issue of the
association with psychiatric disorders. It was generally agreed there was no conclusive
evidence of any socio-economic bias among children with CFS/ME. Any perceived bias was
likely to arise from other factors - thus, only those who could afford transport could get
to tertiary centres, so their patients tended to come from the higher social classes.
Other points raised were whether defining an illness as a psychiatric disorder excluded
physical causes, and whether or not to use the term psychological. Concerns were expressed
over using the term 'illness beliefs'.
2. Report of meeting between the Working Group Chair, the Children's
Sub-Group Chair, and the Chief Medical Officer
The CMO was very supportive of the Group's work. Among issues discussed were:
funding, the huge volume of correspondence received by the CMO from people with CFS/ME,
and the likely form of the final report. This will include three components: a) a summary
of evidence about treatment, b) non-evidence aspects of clinical experience, c) patients'
opinion. It will probably be 18 months before the work is finished.
3. Sounding Board Event: the impact of CFS/ME on children, parents and
family
In structured group discussion the children identified issues concerning them, imagined
ideal solutions and reviewed the reality of such solutions. The main issues were: lack of
general understanding, education, lack of support in schools, social isolation,
difficulties with doctors, time taken to secure diagnosis, lack of NHS support, not
knowing how to get help, not being treated as seriously ill, difficulty in getting the
orange disability badge
Solutions suggested included: orange badges, wheelchairs, respite care, someone in each
school having information on the illness, a place to rest at school, a high profile
campaign backed by the government as in AIDS, GPs having information they would read, and
appropriate provision within the NHS including in-patient care.
4. Education: The Group received a summary account of relevant education issues, derived
from the extensive education material supplied by Group members Jane Colby, Elena Garralda
and Jill Moss. While the emphases in this material varied, they all covered common themes.
Close liaison with the Department of Education and Employment would now ensure the issue
was on their policy agenda. After a pre-meeting at the DfEE, a sub-group would be
established to do detailed work. It was still to be decided whether the Children's Group
would also publish its own education paper.
6. Other issues:
(a) Benefits: A final request was made for any material on problems faced by children
& families to be supplied urgently, as the work on benefits was nearing completion.
(b)Child protection: The Group needed to work jointly with others here. This work would
start with a preliminary meeting of the Group's clinicians and others to discuss the
issues.
Contact Point: Dr Lesley Cooper, Secretary to the Working Group, P0 Box 5463, Wivenhoe,
C07 9TG