Visual Aspects of Reading Performance in Myalgic Encephalomyelitis (ME)

People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) report vision-related reading difficulty, although this has not been demonstrated objectively. Accordingly, we assessed reading speed and acuity, including crowded acuity and acuity for isolated words using standardized tests of reading and vision, in 27 ME/CFS patients and matched controls. We found that the ME/CFS group exhibited slower maximum reading speed, and had poorer crowded acuity than controls. Moreover, crowded acuity was significantly associated with maximum reading speed, indicating that patients who were more susceptible to visual crowding read more slowly. These findings suggest vision-related reading difficulty belongs to a class of measureable symptoms for ME/CFS patients.

Source: Rachel L. Wilson, Kevin B. Paterson, Victoria McGowan and Claire V. Hutchinson. Visual Aspects of Reading Performance in Myalgic Encephalomyelitis (ME). Front. Psychol., 17 August 2018 https://doi.org/10.3389/fpsyg.2018.01468 (Full article)

Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients

Abstract:

BACKGROUND: Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalomyelitis (ME) is a debilitating disorder that is accompanied by reduced cytotoxic activity in natural killer (NK) cells. NK cells are an essential innate immune cell, responsible for recognising and inducing apoptosis of tumour and virus infected cells. Calcium is an essential component in mediating this cellular function. Transient Receptor Potential Melastatin 3 (TRPM3) cation channels have an important regulatory role in mediating calcium influx to help maintain cellular homeostasis. Several single nucleotide polymorphisms have been reported in TRPM3 genes from isolated peripheral blood mononuclear cells, NK and B cells in patients with CFS/ME and have been proposed to correlate with illness presentation. Moreover, a significant reduction in both TRPM3 surface expression and intracellular calcium mobilisation in NK cells has been found in CFS/ME patients compared with healthy controls. Despite the functional importance of TRPM3, little is known about the ion channel function in NK cells and the epiphenomenon of CFS/ME. The objective of the present study was to characterise the TRPM3 ion channel function in NK cells from CFS/ME patients in comparison with healthy controls using whole cell patch-clamp techniques.

METHODS: NK cells were isolated from 12 age- and sex-matched healthy controls and CFS patients. Whole cell electrophysiology recording has been used to assess TRPM3 ion channel activity after modulation with pregnenolone sulfate and ononetin.

RESULTS: We report a significant reduction in amplitude of TRPM3 current after pregnenolone sulfate stimulation in isolated NK cells from CFS/ME patients compared with healthy controls. In addition, we found pregnenolone sulfate-evoked ionic currents through TRPM3 channels were significantly modulated by ononetin in isolated NK cells from healthy controls compared with CFS/ME patients.

CONCLUSIONS: TRPM3 activity is impaired in CFS/ME patients suggesting changes in intracellular Ca2+ concentration, which may impact NK cellular functions. This investigation further helps to understand the intracellular-mediated roles in NK cells and confirm the potential role of TRPM3 ion channels in the aetiology and pathomechanism of CFS/ME.

Source: Cabanas H, Muraki K, Eaton N, Balinas C, Staines D, Marshall-Gradisnik S. Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients. Mol Med. 2018 Aug 14;24(1):44. doi: 10.1186/s10020-018-0046-1.

Chronic fatigue syndrome and quality of life

Abstract:

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a challenging long-term condition (LTC) with complex and fluctuating symptoms. It is heterogeneous in presentation without diagnostic indicators; therefore, in health care encounters, insight must be gained from the patient’s perspective. One indicator of impact can be gained by measuring quality of life (QoL). By applying a patient-reported outcome measure (PROM), professionals can gather insights with direct relevance to the patient questioned. Such a tool can act therapeutically tool to promote holistic and individualized professional interventions and interval measurement can inform commissioning of specialist services.

Standard practice appears not fully to capture the experience of CFS, while a search of the literature turned up QoL patient-reported outcome tools, but failed to reveal a CFS/ME-specific measure. The author explores a valid and reliable PROM that can monitor change and evaluate the UK National Institute of Clinical Excellence rehabilitation program, as delivered by specialist National Health Service units. An alternative, the World Health Organization’s quality-of life instrument (WHOQoL)-Bref26, is reviewed for relevance to the condition, measuring treatment outcomes and the wider debate of measuring QoL in LTCs.

Source: Roberts D. Chronic fatigue syndrome and quality of life. Patient Relat Outcome Meas. 2018 Aug 1;9:253-262. doi: 10.2147/PROM.S155642. eCollection 2018. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6078083/ (Full article)

The expression signature of very long non-coding RNA in myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic debilitating disease with huge social-economic impact. It has been suggested that immune dysregulation, nitrooxidative stress, and metabolic impairment might contribute to disease pathogenesis. However, the etiology of ME/CFS remains largely unclear, and diagnostic/prognostic disease markers are lacking. Several long noncoding RNAs (lncRNA, > 200 bp) have been reported to play roles in immunological diseases or in stress responses.

Methods: In our study, we examined the expression signature of 10 very long lncRNAs (> 5 kb, CR933609, His-RNA, AK124742, GNAS1-AS, EmX2OS, MIAT, TUG1, NEAT1, MALAT1, NTT) in the peripheral blood mononuclear cells of 44 ME/CFS patients.

Results: LncRNAs NTT, MIAT and EmX2OS levels were found to be significantly elevated in ME/CFS patients as compared with healthy controls. Furthermore, NTT and EmX2OS levels increased with disease severity. Stimulation of human monocytic cell line THP-1 and glioma cell line KALS1 with H2O2 (oxidative stress) and poly (I:C) (double strand RNA, representing viral activation) increased the expression levels of NTT and MIAT.

Conclusions: Our study revealed a ME/CFS-associated very long lncRNA expression signature, which might reflect the regulatory response in ME/CFS patients to oxidative stress, chronic viral infection and hypoxemia. Further investigations need to be done to uncover the functions and potential diagnostic value of these lncRNAs in ME/CFS.

Source: Yang CA, Bauer S, Ho YC, Sotzny F, Chang JG, Scheibenbogen C. The expression signature of very long non-coding RNA in myalgic encephalomyelitis/chronic fatigue syndrome. J Transl Med. 2018 Aug 17;16(1):231. doi: 10.1186/s12967-018-1600-x. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1600-x (Full article)

Netflix and Hill: The True Story Behind “Afflicted”

Reprinted with the kind permission of Jamison Hill.

By Jamison Hill

On August 10th Netflix released Afflicted, a seven-episode series in which I appear with six other chronically ill patients. Though I had high hopes for the series, and some parts were accurate, it has ultimately caused damage to the chronic illness community, portraying many of the participants as hypochondriacs and the illnesses they face as psychosomatic rather than their true physical nature.

I have debated about writing this blog post because in being honest about my experiences with Afflicted, I felt that might diminish my story and the stories of my fellow participants. I also didn’t want to diminish the work of some truly talented and genuine people who worked on the series and just happened to land a bad gig. But above all else I feel like this is an unjust outcome that needs to be brought to the public’s attention.

I’m not victimizing myself, or anyone else, but I am incredibly disappointed with the scope and slant of the overall series.

Nevertheless, I am still proud of my part in the series. There were some truly memorable moments to my story, glimpses into my life that I’m so grateful to have documented and to be able to revisit in the future. When filming commenced I had been bedridden for two years and was mostly unable to speak but for a few short, whispered words each day. The year and a half prior to that I had been too sick to chew food and had to survive on IV fluids and liquefied meals.

When I was approached about being in Afflicted, I had already written several essays about my fight for survival, but having it told visually was appealing to me. However, this meant giving control of the narrative to people who, unbeknownst to me at the time, had a dishonest agenda. That’s why, perhaps out of sheer instinct, I worked extremely hard to make sure my story was told in the best possible light. Now, after watching the finished product, I feel it very easily could have gone the other way.

In the days following the show’s release I’ve wondered why my story turned out relatively well when others did not. Perhaps I was the most debilitated participant and because I usually couldn’t speak loud enough for the microphones to pick up my voice, the producers decided to take it easy on me. It could also have been because, while on camera, I was fully aware that although the filmmakers said they had good intentions, people with ulterior motives can seem altruistic if they say the right thing in the right situation.

Continue reading “Netflix and Hill: The True Story Behind “Afflicted”” →

Longitudinal associations of lymphocyte subsets with clinical outcomes in chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is characterized by prolonged fatigue and other physical and neurocognitive symptoms. Some studies suggest that CFS is accompanied by disruptions in the number and function of various lymphocytes. However, it is not clear which lymphocytes might influence CFS symptoms.

PURPOSE: To determine if patient reported fatigue symptoms and physical functioning scores significantly changed across time with lymphocyte counts as evidence of a relation among chronic fatigue symptoms and the immune response.

METHODS: The current longitudinal, naturalistic study assessed the cellular expression of three lymphocyte subtypes — natural killer (NK) cells (CD3-CD16+ and CD3-CD56+) and naïve T cells (CD4+CD45RA+) — to determine whether changes in lymphocytes at 4 time points across 18 months were associated with clinical outcomes, including CFS symptoms, physical functioning, and vitality, among patients with chronic fatigue.. Latent growth curve models were used to examine the longitudinal relationship between lymphocytes and clinical outcomes.

RESULTS: Ninety-three patients with Fukuda-based CFS and seven with non-CFS fatigue provided study data. Results indicated that higher proportions of naïve T cells and lower proportions of NK cells were associated with worse physical functioning, whereas higher proportions of NK cells (CD3-CD16+) and lower proportions of naïve T cells were associated with fewer CFS symptoms.

CONCLUSION: These findings suggest that lymphocytes are modestly related to clinical outcomes over time.

Source: Mehalick ML, Schmaling KB, Sabath DE, Buchwald DS. Longitudinal associations of lymphocyte subsets with clinical outcomes in chronic fatigue syndrome. Fatigue. 2018;6(2):80-91. doi: 10.1080/21641846.2018.1426371. Epub 2018 Jan 12.  https://www.ncbi.nlm.nih.gov/pubmed/30112249

Multidisciplinary rehabilitation treatment is not effective for myalgic encephalomyelitis/chronic fatigue syndrome: A review of the FatiGo trial

Abstract:

The FatiGo trial concluded that multidisciplinary rehabilitation treatment is more effective for chronic fatigue syndrome/myalgic encephalomyelitis in the long term than cognitive behaviour therapy and that multidisciplinary rehabilitation treatment is more cost-effective for fatigue and cognitive behaviour therapy for quality of life. However, FatiGo suffered from a number of serious methodological flaws. Moreover, it ignored the results of the activity metre, its only objective outcome. This jeopardizes the validity of FatiGo. Its analysis shows that there was no statistically significant difference between multidisciplinary rehabilitation treatment and cognitive behaviour therapy and neither are (cost-)effective. FatiGo’s claims of efficacy of multidisciplinary rehabilitation treatment and cognitive behaviour therapy for chronic fatigue syndrome/myalgic encephalomyelitis are misleading and not justified by their results.

Source: Mark Vink and Alexandra Vink-Niese. Multidisciplinary rehabilitation treatment is not effective for myalgic encephalomyelitis/chronic fatigue syndrome: A review of the FatiGo trial. Health Psychology Open. http://journals.sagepub.com/doi/10.1177/2055102918792648 (Full article)

Netflix Launches “Afflicted,” a Docuseries about Chronic Illnesses

On Friday, August 10, Netflix is launching a docuseries called “Afflicted.” The series chronicles the stories of seven chronically ill people who are searching for answers to their baffling symptoms, and for relief.

“Afflicted” features ME patient Jamison Hill, a former bodybuilder and personal trainer, who became sick at the age of 22. His disease progressed to its most severe form, leaving him unable to speak, eat solid food, or leave his bed. His moving personal essays have been published in Men’s Journal, The Washington Post, VICE, and the New York Times. He was featured in “Forgotten Plague,” a full-length documentary about myalgic encephalomyelitis. Jamison maintains a popular blog on ME.

Visit him at jamisonwrites.com.

You can watch the trailer HERE.

You can read an interview with Jamison HERE.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-Metabolic Disease or Disturbed Homeostasis?

Abstract:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex disease characterized by debilitating fatigue, lasting for at least 6 months, with severe impairment of daily functioning and associated symptoms. A significant percentage of ME/CFS patients remains undiagnosed, mainly due to the complexity of the disease and the lack of reliable objective biomarkers. ME/CFS patients display decreased metabolism and the severity of symptoms appears to be directly correlated to the degree of metabolic reduction that may be unique to each individual patient. However, the precise pathogenesis is still unknown preventing the development of effective treatments. The ME/CFS phenotype has been associated with abnormalities in energy metabolism, mostly with mitochondrial dysfunction, resulting in reduced oxidative metabolism. Mitochondrial dysfunction may be further contributing to the ME/CSF symptomatology by extracellular secretion of mitochondrial DNA, which could create an “innate” inflammatory state in the hypothalamus, thus disrupting normal homeostasis. We propose that stimulation of hypothalamic mast cells activates microglia leading to focal inflammation in the brain and disturbed homeostasis.

Source: Hatziagelaki E, Adamaki M, Tsilioni I, Dimitriadis G, Theoharides TC. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-Metabolic Disease or Disturbed Homeostasis? J Pharmacol Exp Ther. 2018 Aug 3. pii: jpet.118.250845. doi: 10.1124/jpet.118.250845. [Epub ahead of print]   http://jpet.aspetjournals.org/content/early/2018/08/03/jpet.118.250845.long (Full article)