JUST ASK! AN NCF COLUMN FOR INQUIRING PATIENTS
By Alan Cocchetto, NCF Medical Director © 2014
From Winter 2014-2015 Forum
The “Just Ask!” column is intended to act as a means for patients to inquire about issues related to the NCF’s research activities. This column is NOT intended to act as medical advice in any way, shape or form! The National CFIDS Foundation assumes no responsibilities for any action or treatment undertaken by readers. For medical advice, please consult your own personal healthcare providers
Q: As one who has this illness, I am encouraged by the different disease markers that continue to be identified with our disease. Do you have any comments regarding this?
A: I am very encouraged as well. Disease markers assist scientists in discerning characteristics that may be important in understanding the disease processes. One group that I am impressed with is a research group from Barcelona, Spain. In their most recent article titled “Screening NK-, B- and T-cell phenotype and function in suffering from Chronic Fatigue Syndrome” identifies several markers that have been of interest to other CFIDS/ME researchers but one in particular is certainly worth looking at . In this article, one of the newer markers identified in patients was the increased expression of NKp46, an activating NK-cell specific marker. A quick literature search revealed that NKp46 activates NK-cell cytotoxicity to kill tumor cells  and it is used to identify specific cells that are susceptible to leukemic transformation . This certainly provides us with additional hints as to what may be occurring in the CFIDS/ME disease process.
Q: I was intrigued by the question asked by “Sick and tired to death” published in the last Forum. Since this resonated with me, have you seen any other studies that may be along the same lines?
A: I received several comments from PWCs regarding my last column outlining the delegitimation of illness experience in Chronic Fatigue Syndrome . Another journal article that I ran across was titled “Victimization in Chronic Fatigue Syndrome and Fibromyalgia in Tertiary Care .” I have had several conversations with fellow PWCs about the contents of this article and have forwarded this to many patients for them to read. In this paper, the authors studied the prevalence and characteristics of different forms of victimization in 95 patients suffering from chronic fatigue syndrome (CFS) or fibromyalgia (FM) compared with a chronic disease group, including rheumatoid arthritis (RA) and multiple sclerosis (MS) patients and a matched healthy control group. The authors assessed prevalence rates, nature of victimization (emotional, physical, sexual), life period of occurrence, emotional impact, and relationship with the perpetrator by a self-report questionnaire on burdening experiences. CFS and FM patients showed significantly higher levels of emotional neglect and abuse and of physical abuse, with a considerable subgroup experiencing lifelong victimization. The family of origin and the partner were the most frequent perpetrators. With the exception of sexual abuse, victimization was more severely experienced by the CFS/FM group. No differences were found between healthy control subjects or RA/MS patients, and between CFS and FM patients. These findings support etiological hypotheses suggesting a pivotal role for chronic stress in CFS and FM and may have important therapeutic implications. The NCF has made this article available for its members.
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