Our regular roundup of research abstracts that have not already appeared on the MEA website.
Research topics this week include the overlap between ME/CFS and sarcoidosis; enteroviral infection, pain relief, and four scientists express their differing views on ME/CFS research.
Nat Rev Neurosci. 2011 Jul 27;12(9):539-44. doi: 10.1038/nrn3087.
Chronic fatigue syndrome: understanding a complex illness.
Holgate ST, Komaroff AL, Mangan D, Wessely S.
University of Southampton, Infection, Inflammation and Immunity Division, School of Medicine, Southampton General Hospital, Tremona Road, Southampton, SO16 6YD, UK. sth@soton.ac.uk
Abstract
Chronic fatigue syndrome (CFS) is a debilitating illness that affects many people. It has been marred by controversy, from initial scepticism in the medical community about the existence of the condition itself to continuing disagreements – mainly between some patient advocacy groups on one side, and researchers and physicians on the other – about the name for the illness, its aetiology, its pathophysiology and the effectiveness of the few currently available treatments. The role of the CNS in the disease is central in many of these discussions. Nature Reviews Neuroscience asked four scientists involved in CFS research about their views on the condition, its causes and the future of research aimed at improving our understanding of this chronic illness.
Chest. 2011 Aug;140(2):441-7. Epub 2011 Feb 17.
Characterization of chronic fatigue in patients with sarcoidosis in clinical remission.
Korenromp IH, Heijnen CJ, Vogels OJ, van den Bosch JM, Grutters JC.
Department of Pulmonology, St. Antonius Hospital Nieuwegein; , University Medical Center Utrecht, Utrecht, The Netherlands.
Abstract
BACKGROUND:
Patients with sarcoidosis frequently complain of fatigue, even when sarcoidosis has come into clinical remission. The primary aim of this study was to assess the severity of fatigue in patients with sarcoidosis in clinical remission and to characterize it according to the international criteria for chronic fatigue syndrome (CFS). Furthermore, we evaluated whether fatigue is associated with depression and anxiety, health status, and patient-reported sleep quality, and we recorded physical activity levels and muscle strength as objective assessments of fatigue.
METHODS:
Data on 75 patients with sarcoidosis in clinical remission were obtained by questionnaires (Checklist Individual Strength [CIS], Symptom Checklist-90, Beck Depression Inventory for primary care, Medical Outcomes Study 36-Item Short-Form Health Survey), standardized interview (CFS criteria), sleep diary, accelerometer, and muscle strength tests.
RESULTS:
Fatigue severity mean score in patients with sarcoidosis in clinical remission was high (CIS fatigue severity 30.5 ± 15.5), and criteria for CFS were met in 47% of fatigued participants. Median time since diagnosis was 9 years. Fatigue was associated with depression (P = .01), anxiety (P = .013), and reduced health status (P < .001). Scores on sleep quality were normal. Physical activity levels were reduced in fatigued participants. Muscle strength, particularly handgrip (P = .006) and quadriceps strength (P < .001), was significantly associated with fatigue.CONCLUSIONS:Fatigue in patients with sarcoidosis in clinical remission is a frequent symptom and can be characterized as a severe and long-lasting problem, symptomatically similar to CFS. Psychologic distress and reduced health status are associated with fatigue. Interestingly, we observed significantly reduced physical activity and muscle weakness in fatigued patients.
Note from Dr Charles Shepherd: As we point out in the clinical assessment section of the MEA guidelines booklet – ME/CFS/PVFS: An Exploration of the Key Clinical Issues – sarcoidosis should form part of the initial differential diagnosis of ME/CFS, especially in people who also have chest symptoms.
J Clin Pathol. 2011 Aug;64(8):722-4. Epub 2011 Jan 28.
Carcinoid tumour associated with enterovirus infection.
Chia J, Chia A, El-Habbal R.
EV Med Research, Lomita, California 90717, USA. evmed@sbcglobal.net
Abstract
Enteroviruses commonly infect the gastrointestinal tract, and replication of enteroviruses has been well documented in the Peyer patches of the small bowel. Chronic enterovirus infection has been found in the stomach and terminal ileum of patients with myalgic encephalomyelitis/chronic fatigue syndrome. The authors report the unexpected finding of enterovirus VP1 protein, by immunoperoxidase staining, in carcinoid tumours found in one patient with myalgic encephalomyelitis/chronic fatigue syndrome and another patient with chronic lower quadrant abdominal pain, and suggest a possible association between enteroviruses and tumorigenesis.
Note from Dr Charles Shepherd: Dr Chia is also investigating the link between enteroviral infection and ME/CFS. More information on this work can be found in the research section of ME/CFS/PVFS: An Exploration of the Key Clinical Issues.
Physiother Theory Pract. 2011 Jul;27(5):373-83. Epub 2010 Nov 1.
The search for pain relief in people with chronic fatigue syndrome: a descriptive study.
Marshall R, Paul L, Wood L.
Nursing & Health Care, Faculty of Medicine, University of Glasgow, Glasgow, Scotland, UK. r.marshall@clinmed.gla.ac.uk
Abstract
The purpose of this study was to investigate the use and perceived benefit of complimentary and alternative medicine (CAM) and physiotherapy treatments tried by people with chronic fatigue syndrome (CFS) to ease painful symptoms. This study used a descriptive, cross-sectional design. People with CFS who experienced pain were recruited to this study.
Participants were asked during a semistructured interview about the treatments they had tried to relieve their pain. Each interview was conducted in the home of the participant. Fifty participants were recruited, of which, 10 participants were severely disabled by CFS. Eighteen participants were trying different forms of CAM treatment for pain relief at the time of assessment. Three participants were currently receiving physiotherapy. Throughout the duration of their illness 45 participants reported trying 19 different CAM treatments in the search for pain relief. Acupuncture was reported to provide the most pain relief (n=16). Twenty-seven participants reported a total of 16 different interventions prescribed by their physiotherapist.
The results of this study suggest some physiotherapy and CAM treatments may help people manage painful CFS symptoms. Future research should be directed to evaluating the effectiveness of interventions such as acupuncture or gentle soft tissue therapies to reduce pain in people with CFS.
Note from Dr Charles Shepherd: The MEA has an information leaflet that covers all aspects of pain relief in ME/CFS.
“disagreements – mainly between some patient advocacy groups on one side, and researchers and physicians on the other – about the name for the illness, its aetiology, its pathophysiology and the effectiveness of the few currently available treatments.”
Wessely continuing his political campaign to discredit interpretations of CFS which differ from his own psychobabble version of reality.
Bearing in mind the extraordinary blanket coverage of this campaign, is it not time for the ME association to get to the bottom of it? Why and why now?
Has it got anything to do with the retirement of Tony Pinching, establishing a de facto monopoly of interpretation by intimidating possible Pinching pretenders?
Did the Independent publish a smear like the DT, observer, times, spectator? Perhaps the way forward would be for the ME Association to write to the Independent inviting them to investigate this campaign, who was behind it, who paid and what its precise objectives were apart from monstering sick people?
I agree, Forthurst, it needs investigating. The independent is a good idea, perhaps also Jon Snow of Channel 4 news.
Curious the monotonous regualarity with which Professor Wessely pops up, despite having claimed for years he was giving up CFS research because of intimidation….
Re Dr Chia’s finding of enterovirus particles in carcinoid tumours of an ME patient: does Dr Shepherd have any information on whether there is a higher rate of the carcinoid syndrome in people with ME, than in those without? I was recently tested for this because of symptoms of sweating and flushing; the blood test is for high levels of 5H IAA. on two successive occasions my levels were raised, just outside the top of the normal range. Given that inappropriate flushing and sweating is a common complaint in ME, I wonder if patients were routinely tested for this, we would often see high levels.
The only reference I found was on a site about ENADA, where high 5H IAA levels were found in people whose health was improved by this supplement.