I have been reading the 2004
Management of chronic fatigue syndrome / myalgic encephalopathy in children and young people
on the RCPTH website which it notes
"
RCPCH notes: The guideline has been post-dated by the
NICE CFS/ME guideline although
some sections may still be of relevance.
"
I'm only part way through but a number of things have surprised me (considering the recent discussions with NICE about updating the 2007 guidelines).
The full pdf is here:
https://www.rcpch.ac.uk/system/files/protected/page/RCPCH CFS.pdf
"
Paediatricians should undertake a thorough physical examination of all children and young people presenting with symptoms of profound fatigue at the earliest opportunity.
Particular components of the examination include:
•General physical examination including height, weight and head circumference
•A neurological examination (including ophthalmic fundal examination,gait and signs of muscle wasting)
•Lymph node/liver/spleen/tonsillar enlargement. Any abnormal clinical signs such as marked cervical lymphadenopathy need full investigation(28;40;61)
•Palpation over frontal, ethnoid and maxillary sinuses (to identify chronic sinusitis)
•
Lying and standing BP and HR (for evidence of Postural Orthostatic Tachycardia Syndrome (POTS) or postural hypotension) (56;71), ((72;73)Level 2+)
Additional non-invasive tests which may be undertaken in the initial physical examination
and may help with making a differential diagnosis or identifying groups of symptoms
needing symptomatic treatment include:
• Tenderness score at pressure points (FMS inventory ((56;74;75) Level 2+)) to
help with differential diagnosis of fibromyalgia, which has overlapping symptoms
with CFS/ME ((75) Level 2+), (76))
• Assessment of joint mobility and any cutaneous features (scarring or
hyperextensibility) to help make a differential diagnosis of EDS (56)"
Routine tests on all patients should include a blood test and a urine test for
the following investigations:
·FBC & film to exclude anaemia, iron deficiency and leukaemia
·ESR (or viscosity) (unlikely to be elevated in CFS/ME (77;78)) and CRP
(c-reactive protein) (a high level could suggest autoimmune disease, e.g.
Systemic Lupus Erythematosus, or chronic infection, e.g. Tuberculosis)
·Blood glucose for diabetes mellitus ((22) level 2+)
·Blood biochemistry (Na, K, creatinine) to look for renal impairment or
endocrine abnormality (e.g. Addison’s)
·CK for evidence of muscle disease
·Thyroid function because early clinical signs of hypothyroidism may be very subtle
·Liver function (transaminases: AST, ALP and albumin) for hepatitis
·Urine tested for protein, glucose/sugar, to exclude renal disease, diabetes
mellitus (22) level 2+); tested for blood leukocytes and nitrites to exclude
urinary tract infection
Second Line Investigations
The following tests should not be done as routine and should only be undertaken
when symptoms and or signs and or results of previous investigations suggested a
particular differential diagnosis or set of diagnoses. The list of potential investigations
is exhaustive and the table on page 29 gives some indication of the wide range of
possible tests. A few important examples are:
·Blood tests for antinuclear antibody, immunoglobulins, coeliac serology, Lyme
disease, toxoplasma, brucellosis antibodies, copper & caeruloplasmin, cortisols
& Synacthen test, B12, folate, ferritin, carbon monoxide (blood
carboxyhaemoglobin)
·Urinalysis Organic acids (glc/ms), amino acids (by 2D lc), toxicology screen
·Imaging:Chest X-Ray
·Formal educational & psychometric assessment
·Formal psychiatric assessment:in order to establish a psychiatric differential diagnosis"
"Viral titres or other viral tests to impute or exclude current viral infection
are not recommended apart from EBV IgM, IgG and EBNA."
"Assessment of other immunological parameters such as lymphocyte markers may
form part of research protocols but are very unlikely to contribute to routine clinical
management"
Unsurprisingly it has several pages on the psychological well-being assessment.
But it seems that a lot of tests (eg POTS) were dropped or considered not necessary in the 2007 guidelines (I've only skimmed thro them so if I might have missed them(?) but recently I remember reading that MEA are trying to get POTS and OI included(?))
but also in the existing guidelines it says
"After a patient is referred to specialist care, an initial assessment should be done to confirm the diagnosis.".................so what tests/assessments do they do?(apart from the psyschological one).
I remember reading one of ECs research papers that says they relied on the GPs diagnosis and that for a number of the subjects they didn't actually have confirmation other than for 'Chronic disabling fatigue' (CDF).
Does any of her research actually say what tests were done to confirm diagnosis?
The more I read this stuff the worse it gets.......
