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From 31st January to 2nd February 2003, I was privileged to attend the AACFS 6th International Conference on CFS,FM and related syndromes, held at Chantilly, Virginia. The first day was a clinical conference for physicians working in the field of CFS, followed by a day and a half of research presentations.
The conference opened with an introduction and overview by Charles Lapp (Charlotte, NC) and Leonard Jason (Chicago, IL). Lapp ran through the history of CFS, which was described by Hammurabi as early as 2000 BC. Jason reviewed the problem of CFS and its definition, citing that 50 million Americans suffer from fatigue, of which 14 million have prolonged fatigue and 8 million have a diagnosis of Chronic Fatigue. CFS fitting the research case definition probably affects 800,000 in the USA. He outlined the difficulties in diagnosis and overlap with major depression. Chronic Fatigue is a diagnostic feature of major depressive disorder (MDD) with 4 of the minor CFS symptoms occurring concurrently (unrefreshing sleep, joint pain, muscle pain and impaired concentration). He then outlined the major distinguishing features between CFS and MDD and other disorders such as generalised anxiety disorder and somatization disorder.
Epidemiologically, a major study showed that there is a predominance of females with CFS, and almost double the number of Latinos compared to American whites or Afro-Americans. There was no history of abuse in the majority of cases and in 50% of the cases there was a family history of auto-immune disease. Those with CFS were found to be more functionally impaired than those with Type 2 diabetes, congestive heart failure, MS or end-stage renal disease. Many do however show improvement over 2 years, though the majority do remain significantly impaired. Various physical and psychological scales were discussed to measure outcomes and co-morbidity, including wearing a device to produce actigraphs showing daily activity. Those with CFS particularly showed reduced activity and non-restorative sleep.
Lapp then discussed the Fukuda case definition, which is a research definition with likely future revision. Those with a history of alcohol or substance abuse should only be excluded for 2 years, and for those with morbid obesity, the BMI will be raised to >45 for exclusion. (This represents a 5’8” person weighing more than 300 lb) He then made note of the Provider Education Project. This is a web based course in CFS for physicians with a competency certificate at the end.
He then reviewed physical examination in CFS pointing out particularly that lymph glands and skin maybe very tender. Laboratory findings in CFS were usually essentially normal, though there maybe abnormal immune complexes, atypical lymphocytes, lowered IgG, small increase in alk phos, elevations in cholesterol and small increases in ANA and thyroid antibodies. MRI studies of the brain have demonstrated high intensity T2 weighted lesions, but these do occur in other diseases and are non-diagnostic. SPECT scans to demonstrate function show decreases in cerebral blood flow with exercise, often worse 24 hours later.
There was acute onset in 85% cases, and in 72% the main precipitating factor was infection, with a small number of cases following trauma, surgery, childbirth, allergic reaction and emotional trauma. He reviewed possible causes of CFS, including various infectious agents, immunological defects leading to T cell activation, increases in cytokines and decreased NK cell function, HPA axis dysfunction with lowered cortisol levels and orthostatic intolerance. 92% of patients with CFS can become syncopal with orthostatic intolerance, and as well as having a drop in BP, symptoms may come on after a delay of 15 minutes.
A diagnostic decision making model was then presented with a useful flow chart for physicians.
The differential diagnosis covered a very wide range of diseases, and the audience participated in discussion of the characteristic diagnostic features of other conditions such as:
Lab tests for all of the above should be performed according to the symptoms and history. Further investigation should be pursued if the ESR is elevated as that is not characteristic of CFS, when it tends to be low.A diagnosis of fibromyalgia (FM) is made if there is widespread pain of at least 3 months’ duration coupled with tenderness in 11 of the 18 classical tender point. Gulf War Illness (GWI) tends to overlap with CFS but there are important differences, such as gastrointestinal, respiratory and skin symptoms, which are uncommon in CFS. The 1999 case definition for Multiple Chemical Sensitivity (MCS) was presented. The main symptoms are cognitive impairment, mood disorder, disequilibrium, respiratory problems, headaches, nausea and fatigue. Symptoms are reproducible with repeated exposure and tend to improve when incitants are removed. There is considerable overlap between MCS and CFS with 30% of those with MCS fulfilling the criteria for CFS.
Lapp then presented his stepwise approach to the management of CFS:
2. Activity - balancing light activity with rest and increasing the level of activity slowly over time.
3. Nutrition – avoiding malnutrition, minimising sugar, caffeine, alcohol and tobacco, keeping fats low if suffering from diarrhoea and avoiding dairy products and or/gluten for 5 days to see if there is any improvement.
4. Specific symptom therapy
Several other drugs were then discussed re their relevance in CFS: dexamphetamine, eldepryl, cylert,
methylphenindate, modafinil and a new drug used for ADD called amoxetine.
Several other drugs were then discussed re their relevance in CFS: dexamphetamine, eldepryl, cylert, methylphenindate, modafinil and a new drug used for ADD called amoxetine.
Disability evaluation of those with CFS was then discussed by C Lapp. He pointed out that in the US, primary care physicians are faced with the task of advocating for 800,000 patients with CFS and more than 2 million with FM. Up to 50% of these people are unable to work. Evaluation needs to be done by a primary carer familiar with CFS. Standardised psychometric and functional testing instruments need to be used. For presentation to Social Security in the US, CFS patients must fit the 1994 Fukuda definition, with one or more specific medical signs clinically evaluated over at least 6 consecutive months (eg swollen or tender nodes, tender points etc) – and certain specific lab findings are acceptable. (eg NMH by tilt table testing, abnormal cranial MRI). Documentation of cognitive and emotional difficulties is also important. Physicians world wide should be aware of the requirements to keep good notes on relevant issues for these patients.
S.Schwartz (Tulsa OK), an infectious diseases physician, then outlined his ideas as to what to do when “you reach the end of the prescription pad”. He uses a “5 points of a star” approach looking at:
1. Pain control
2. Improved cognitive function
3. Acceptance, understanding and modification of lifestyle
4. Improved sleep
5. Energy improvement
He emphasised particularly that other measures will not work until sleep is fixed. The aim should be to prevent permanent disability. It is important to collect as much data as possible before seeing the patient, using appropriate history forms, looking at impact rather than symptoms, and measuring instruments designed for the job should be used. Adequate time then needs to be allowed for the consultation. One should measure what is there rather than what is not. Such scales should measure fatigue, depression, memory/recall etc. The patient needs reassurance that he does not have dementia. The patient needs an island of care including the physician, the nurse and other medical assistants (physiotherapist and/or occupational therapist, rehab consultant), psychosocial support persons (psychologist, social worker, neuropsychologist) and possibly an attorney.
Sleep management, graded exercise, goal setting, counselling, CBT and family involvement all need to be addressed coupled with relearning and restructuring environment. Vocational rehabilitation should include workplace adaptations, disability issues and rights. Professionally led support groups are helpful but patient led support groups can reinforce negative cognition. Schwartz runs an annual seminar for patients, family and friends.
D.Uslan (Seattle WA) a rehabilitation consultant, then outlined his approach to CFS management. He often uses workbooks and aims to see patients very regularly. Self management, pacing and education are important, and cultural, religious and ethnic orientations should be considered. The workplace maybe “pathological” and leave of absence maybe required. Attention to troubled relationships, sleep management (avoidance of obsessive thinking), cognitive rehabilitation (as opposed to CBT) is needed.
P.Fennell (Albany NY) then discussed a systematic approach to management of CFS, using her 4-phase theory for psycho-social intervention.
Physical/behavioural, psychological and social/interactive features for each phase were illustrated. Work is aimed at stabilization in each phase. 44 subjects had been studied using the Fennell phase inventory, and the study supported the distinction between the phases. Assessment and review throughout the process was discussed.
C Lapp (Charlotte NC) then rounded off the formal part of this day with 2 case presentations which provided interactive discussion, and were examples of how the Provider Education Project is presented to participants.
Opportunity to view the posters (covered later) was then provided, followed by a dinner symposium at which Trudie Chalder discussed CBT.
Dinner Symposium – T Chalder (London UK) acknowledged the physical as opposed to psychological nature of this illness. CBT focuses on educating the patient about the illness and diminishing the focus on symptoms. There should be concentration on overcoming symptoms rather than looking for a cause of symptoms. At her clinic patients are seen regularly for 12 sessions or more, but there is never any pressure brought to bear. The emphasis is on achieving normality. For example, in sleep management, a sleep diary is kept, with encouragement to get up early, to keep regular hours and avoid cat naps. An exercise plan needs to progress very slowly, particularly if the illness is severe, as there is usually a fear of bringing on symptoms with activity. A crash and burn approach needs to be avoided. Several short exercise spells each day are recommended and the length of the spell may only increase in length by 1 minute per week.. Patients may experience worsening symptoms each time the exercise is stepped up. The patient needs to understand this and realise no harm is likely. The eventual aim is to return to normal life in a carefully graded fashion.
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