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Creative Fundraising

May 14, 2015 by Robin Sansom

Raising money for ME/CFS Research

Why?

Because ME/CFS is one of the most under-funded illnesses.  This is due to only partial recognition.   There may be a lot of biomedical research findings which provide strong evidence that the  illness is a real and primarily organic illness but these are small projects which don’t tend to make it into the big medical journals. Therefore there is still a lot of  ignorance both in the medical community and in society at large which doesn’t help to encourage funding.

There are organisations and charities successfully using crowdfunding for research projects in the absense of goverment funding.  Two good examples are ME Research UK and Invest in ME.

Some people with ME/CFS are well enough to do craftwork which is sellable.  A few individuals within Elevate have sold a few things for charitable causes and it’s something we like to encourage.  Please contact us to find out more.

ME Research UK

Invest in ME logo

Pressed leaf and flower card
Pressed flowers and leaves

Handmade by Nikki
Cross-stitch
Click to see or share creativity

Card making

Filed Under: Creativity, Elevate News, Research

Study Finds Brain Abnormalities in ME/CFS

December 9, 2014 by Robin Sansom

ME/CFS brain abnormalitiesAt the Stanford University School of Medicine “Radiology researchers have discovered that the brains of patients with chronic fatigue syndrome have diminished white matter and white matter abnormalities in the right hemisphere.”

“In addition to potentially providing the CFS-specific diagnostic biomarker we’ve been desperately seeking for decades, these findings hold the promise of identifying the area or areas of the brain where the disease has hijacked the central nervous system,”  http://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html

“Using a trio of sophisticated imaging methodologies, we found that CFS patients’ brains diverge from those of healthy subjects in at least three distinct ways,”

“CFS is one of the greatest scientific and medical challenges of our time,” said the study’s senior author,Jose Montoya, MD, professor of infectious diseases and geographic medicine.

Three key findings

The analysis yielded three noteworthy results, the researchers said. First, an MRI showed that overall white-matter content of CFS patients’ brains, compared with that of healthy subjects’ brains, was reduced. The term “white matter” largely denotes the long, cablelike nerve tracts carrying signals among broadly dispersed concentrations of “gray matter.” The latter areas specialize in processing information, and the former in conveying the information from one part of the brain to another.

That finding wasn’t entirely unexpected, Zeineh said. CFS is thought to involve chronic inflammation, quite possibly as a protracted immunological response to an as-yet unspecified viral infection. Inflammation, meanwhile, is known to take a particular toll on white matter. [see recent study on elevated levels of neuroinflammation in ME/CFS]

But a second finding was entirely unexpected. Using an advanced imaging technique — diffusion-tensor imaging, which is especially suited to assessing the integrity of white matter — Zeineh and his colleagues identified a consistent abnormality in a particular part of a nerve tract in the right hemisphere of CFS patients’ brains. This tract, which connects two parts of the brain called the frontal lobe and temporal lobe, is called the right arcuate fasciculus, and in CFS patients it assumed an abnormal appearance.

Furthermore, there was a fairly strong correlation between the degree of abnormality in a CFS patient’s right arcuate fasciculus and the severity of the patient’s condition, as assessed by performance on a standard psychometric test used to evaluate fatigue.

Full article at http://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html

Filed Under: Published Research, Research

Elevated levels of neuroinflammation in CFS/ME patients

April 14, 2014 by Robin Sansom

PET imaging

Functional PET imaging showing neuroinflammation of patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)

Researchers at the RIKEN Center for Life Science Technologies, in collaboration with Osaka City University and Kansai University of Welfare Sciences, have used functional PET imaging to show that levels of neuroinflammation, or inflammation of the nervous system, are higher in patients with chronic fatigue syndrome than in healthy people.

http://www.riken.jp/en/pr/press/2014/20140404_1/

Filed Under: Published Research, Research

Deficient EBV-Specific B and T-Cell Response in Patients with CFS

January 29, 2014 by Robin Sansom

Editor’s Comment: In this study, a subset of CFS patients was found to have an immune deficiency that allows Epstein-Barr virus (EBV) to replicate, even beyond the acute stage of the original infection. B-cells are the part of the immune system that “remembers” pathogens (viruses, bacteria, etc.) in order to mount attacks against future infections. The patients in this study showed an impaired B- and T-cell response to EBV, leading to latent virus reactivation. (EBV, like all herpesviruses, remains in the body forever.) The early theory that CFS was a form of “chronic mono” now appears to have substantiation.

By Madlen Loebel et al.  (Thanks to Prohealth)

Plus One paper: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0085387

Filed Under: Published Research, Research

UK Rituximab Trial – 75% of funds raised

October 1, 2013 by Robin Sansom

A massive £200k has been pledged to IiME (Invest In ME) by a charitable foundation towards the UK Rituximab treatment trial which will replicate the work pioneered by Norwegian researchers. This research involving the cancer drug Rituximab gives clues to the pathophysiology of the disease and may also produce bio-markers that may be used in future to help diagnosis. Rituximab acts on B cells and so the positive effects on a large proportion ME/CFS patients suggests that at least a subgroup have a disease with an autoimmune element. The researchers are just as interested in those who aren’t helped by Rituximab as those who are, so this research may be beneficial for all ME/CFS patients.

http://www.investinme.org/IIME%20Statement%20UKRT%202013-09-24.htm

Filed Under: Research

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