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The status of and future research into Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

A.B.

Senior Member
Messages
3,780
The status of and future research into Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: the need of accurate diagnosis, objective assessment, and acknowledging biological and clinical subgroups

Abstract

Although Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are used interchangeably, the diagnostic criteria define two distinct clinical entities. Cognitive impairment, (muscle) weakness, circulatory disturbances, marked variability of symptoms, and, above all, post-exertional malaise: a long-lasting increase of symptoms after a minor exertion, are distinctive symptoms of ME. This latter phenomenon separates ME, a neuro-immune illness, from chronic fatigue (syndrome), other disorders and deconditioning.

The introduction of the label, but more importantly the diagnostic criteria for CFS have generated much confusion, mostly because chronic fatigue is a subjective and ambiguous notion. CFS was redefined in 1994 into unexplained (persistent or relapsing) chronic fatigue, accompanied by at least four out of eight symptoms, e.g., headaches and unrefreshing sleep. Most of the research into ME and/or CFS in the last decades was based upon the multivalent CFS criteria, which define a heterogeneous patient group.

Due to the fact that fatigue and other symptoms are non-discriminative, subjective experiences, research has been hampered. Various authors have questioned the physiological nature of the symptoms and qualified ME/CFS as somatization. However, various typical symptoms can be assessed objectively using standardized methods. Despite subjective and unclear criteria and measures, research has observed specific abnormalities in ME/CFS repetitively, e.g., immunological abnormalities, oxidative and nitrosative stress, neurological anomalies, circulatory deficits and mitochondrial dysfunction.

However, to improve future research standards and patient care, it is crucial that patients with post-exertional malaise (ME) and patients without this odd phenomenon are acknowledged as separate clinical entities that the diagnosis of ME and CFS in research and clinical practice is based upon accurate criteria and an objective assessment of characteristic symptoms, as much as possible that well-defined clinical and biological subgroups of ME and CFS patients are investigated in more detail, and that patients are monitored before, during and after interventions with objective measures and biomarkers.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3974331/
 
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Tom Kindlon

Senior Member
Messages
1,734
I think he's an ME patient in the Netherlands, who writes some very nice letters to the editor, etc, in response to bad CBT/GET research, and such. Basically a Dutch Tom Kindlon? :D
Thanks. Although I should say Frank Twisk has written or co-written a lot more full papers than me (I've only published one) and has letters published in Dutch, English and even Norwegian (while all mine are in English).
 

4ME

Messages
7
The status of and future research into Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: the need of accurate diagnosis, objective assessment, and acknowledging biological and clinical subgroups

Abstract



http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3974331/
This Research is from 2006, I am a loss to understand why the ME Community don't seem to be aware of the findings, if or how it has developed, anyone know more http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860619/#__ffn_sectitle summary - We have carried out a pilot study of this approach at Imperial College London (London, UK), which has identified significant protein biomarkers in the blood of patients with CFS (PC, AH, PRL, JRK). In this study, serum samples from 30 patients with CFS and 30 normal blood donors (age‐matched and sex‐matched) were examined. Each serum was tested using CM10 and Q10 chips with a matrix consisting of a saturated solution of sinapic acid in 50% acetonitrile and 0.5% trifluoroacetic acid. Pooled sera from each group (10 pools each of 3 sera for each group) were then anionically fractionated using resin by a standard protocol and analysed using normal‐phase‐20 chips (NP20). This resulted in a collection of six fractions containing eluants of flow‐through with pH 9, pH 7, pH 5, pH 4, pH 3 and acid–organic solvent. These fractions were analysed using the NP20 arrays, and the spectra were analysed using Ciphergen Express Data Manager software (http://ciphergen.com). Biomarkers were found that differentiated the groups, and some of these were found to be reproducible (fig 1
 
Messages
53
I am interested in finding these: "Larger‐scale studies are now being carried out to confirm and further detail these promising results."

Anyone know where they are to be found?

John
 

4ME

Messages
7
I am interested in finding these: "Larger‐scale studies are now being carried out to confirm and further detail these promising results."

Anyone know where they are to be found?

John
They do indeed seem promising, I would also be interested to know if these results have been followed up. This was published in 2006, since then the Psychological approach to ME/CFS has gathered momentum in UK. Awareness of this Research may have readdressed the balance and saved many PWME having to undergo inappropriate treatment.
 

4ME

Messages
7
Many thanks to Annette for the following information Kerr lost his lab in St George's after this paper and went on to study gene expression
http://www.biomedcentral.com/1755-8794/2/38
http://www.cfids-cab.org/MESA/Kerr-5.pdf
Differential expression of key genes identified in this study offer an insight into the possible mechanism of chronic fatigue following infection. The representative biomarkers identified in this research appear promising as potential biomarkers for diagnosis and treatment. This in 2009, so why are PWME in the UK treated with Antidepressants, CBT/GET?
 

4ME

Messages
7
This research in 2011 http://www.plosone.org/article/info:doi/10.1371/journal.pone.0016872
Here we have assessed the ability of a proposed 44 gene classifier [8] to discriminate between CFS patients and healthy control individuals. This classifier was able to discriminate correctly between CFS and healthy control samples in 95% of the training samples. However, when assessed on a new, blinded 128 sample test set only 58% of samples were predicted correctly. Importantly, a high number of false-positive predictions were made, with 31% of CFS-positive predictions being from healthy volunteers. In addition, a high number of false negative predictions were made, 57% of the CFS samples being predicted as healthy controls. Therefore, with the methods used here we cannot predict CFS disease based on the analysis of expression of 44 classifier genes in the peripheral blood.
 

4ME

Messages
7