- Last Updated: 23 November 2015 23 November 2015
Public health research
Differential diagnosis between CFS/ME and fatiguing illness
Nicolette Carlo-Stella (Pavia, Italy) looked at the differential diagnosis of CFS/ME and fatiguing illnesses from a community-based sample. 89 patients were self referred complaining of post-exertional neuro-immune exhaustion to a specialized CFS/ME clinic. 40% of them were diagnosed as suffering from CFS/ME while 60% were not. The non-CFS/ME patients were suffering from a variety of illnesses: rheumatological 43%, endocrine 4.6%, psychiatric 5.6%, gastrointestinal 4.5%, haematological cancer 2.3% and bladder cancer 1.1%. Caution is therefor warranted before making a final diagnosis of CFS/ME.
Increasing the knowledge of physicians
Increasing medical knowledge about CFS/ME and related diseases was addressed by Tina Tidmore (Alabama, USA). The aim was also to set up a speciality centre. A local politician showed interest as he had a personal interest in Lyme disease. As a result a CME course was set up for medical professionals. The new Primer for clinicians was distributed. Further CME on Fibromyalgia and Tick-borne diseases was planned. Efforts continue to recruit physicians to run a specialized clinic. The long time needed for patient visits can be a barrier, as insurance companies do not re-imburse. First steps in creating a centre are to attract a physician willing to work in this somewhat difficult area.
Family aggregation studies in Spain
Family aggregation studies in CFS/ME were discussed by Jesus Castro-Marrero (Barcelona, Spain). The objective of their study was to know the family history and familial aggregation of Spanish CFS/ME patients. 1140 CFS/ME patients were included in the DNA databank. 36% patients had first degree relatives with CFS/ME and/or related conditions, such as fibromyalgia, immune-mediated diseases or rheumatological conditions.
UK CFS/ME biobank
Eliana Laerdo and Erinna Bowman (London, UK) talked about 2 years’ experience with the UK CFS/ME biobank. This is based at the London School of Hygiene and Tropical Medicine. They first discussed how the lay-scientific partnership had shaped and developed the biobank. A consultation process involved discussion between those with CFS/ME and carers, clinicians, researchers and experts in the field of human tissue banks. Those with CFS/ME were overwhelmingly willing to contribute with blood donations. A robust protocol has been developed. Samples are collected from patients with CFS/ME and controls (without fatigue or with MS). Several diagnostic criteria are being used to provide comparison. Regular follow-ups are planned. Blood samples need to be collected and processed within 6 hours. The biobank infrastructure and procedures were presented. The samples will provide an open resource for research, with the potential to lead to biomarker discovery and work that could translate into treatment. Collaboration with other international biobanks is planned.
Epidemiological study in Canada
Margaret Parlor (Ontario, Canada) presented the results quantifying and interpreting a broad range of health characteristics associated with CFS/ME, FM, and Environmental Sensitivities (ES)/MCS. This was to support health care planning in the area. Results were taken from the 2005 and 2010 Canadian Community Health Study (CCHS). 411,500 Canadians have been diagnosed with CFS/ME, 439,000 with FM and 800,500 with ES/MCS. This equates to a prevalence of 4.9% in 2010, which had increased from 4.2% in 2005. These illnesses were shown to have significant impact on individuals and families with many unmet healthcare needs. The information has been forwarded to health system planners, along with clinical and academic information.
Remissions in CFS/ME
The group headed by Dana March (New York, USA) determined the natural course of CFS/ME in a multi-site epidemiology study, compared to other studies undertaken. 4 clinical sites were chosen and patients had had to have been in treatment for at least 5 years. The study was conducted by telephone interview by trained interviewers. The survey comprised mainly middle aged educated white women, born in the USA. Approximately 1/3 had experienced at least one remission. Viral type symptoms showed the most improvement over time. Many reported co-morbid conditions such as FM, depression, anxiety and hypothyroidism. Relatively few were engaged in work, school or equivalent activity. There was some variation across sites. The odds for permanent remission seemed low.
Treatments patients find effective
Lucinda Bateman (Salt Lake City, USA) examined the types of treatment which alter the course of CFS/ME in another similar multi-site epidemiology study. The most effective treatments were self-help strategies (65.2%) such as rest, diet and exercise, followed by traditional medicine (53.3%) such as prescription drugs and vitamins. A small percentage reported benefits from alternative/complementary medicine (16.9%) such as herbal remedies, massage, acupuncture. There was variation between sites.
Consequent conditions to CFS/ME and cancer prevalance
The prevalence of CFS/ME and co-morbid and consequent conditions was examined by Salima Darakjy (New York, USA). 84% of the CFS/ME patients reported at least one significant diagnosis after CFS/ME onset. These included FM, depression, anxiety and hypothyroidism. 16.4% reported malignancies, which is 4 times the prevalence in the normal adult US population. Further research is warranted looking at whether some CFS/ME patients are most at risk of cancers particularly in relation to shared pathophysiological mechanisms.