Mailing address: PO Box 28,
South Australia 5007
Office: Closed while relocating
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.
Progressive brain changes in patients with chronic fatigue syndrome: A longitudinal MRI study
Zack Y. Shan PhD
Richard Kwiatek MBBS
Richard Burnet MBBS
Peter Del Fante MBBS
Donald R. Staines MBBS
Sonya M. Marshall-Gradisnik PhD
Leighton R. Barnden PhD
First published: 28 April 2016 DOI: 10.1002/jmri.25283 Cited by: 0 articles Funded by: Judith Jane Mason Foundation
To examine progressive brain changes associated with chronic fatigue syndrome (CFS).
Materials and Methods
We investigated progressive brain changes with longitudinal MRI in 15 CFS and 10 normal controls (NCs) scanned twice 6 years apart on the same 1.5 Tesla (T) scanner. MR images yielded gray matter (GM) volumes, white matter (WM) volumes, and T1- and T2-weighted signal intensities (T1w and T2w). Each participant was characterized with Bell disability scores, and somatic and neurological symptom scores. We tested for differences in longitudinal changes between CFS and NC groups, inter group differences between pooled CFS and pooled NC populations, and correlations between MRI and symptom scores using voxel based morphometry. The analysis methodologies were first optimized using simulated atrophy.
We found a significant decrease in WM volumes in the left inferior fronto-occipital fasciculus (IFOF) in CFS while in NCs it was unchanged (family wise error adjusted cluster level P value, PFWE < 0.05). This longitudinal finding was consolidated by the group comparisons which detected significantly decreased regional WM volumes in adjacent regions (PFWE < 0.05) and decreased GM and blood volumes in contralateral regions (PFWE< 0.05). Moreover, the regional GM and WM volumes and T2w in those areas showed significant correlations with CFS symptom scores (PFWE < 0.05).
The results suggested that CFS is associated with IFOF WM deficits which continue to deteriorate at an abnormal rate. J. Magn. Reson. Imaging 2016.
We have put ME/CFS Australia (SA) Inc. on this world map of disease prevalence and would love you to join us in this endeavour to help spread the word and assist the push for more research funding. Every head adds more weight!
Mark Camenzind (PhD, Research & Development Advocate to Cure ME and father of a son with ME) is leading an international drive to put a million ME/CFS people, organisations, doctors and friends on the map (10 days ago <1000 – now over 1800 people with ME/CFS listed).
He suggests that you get onto map (with pseudonym or just first name), near your home but not exactly, preferably with the option “able to contact”. For many around the world, this will help to organise regionally, so people can meet to share or advocate, coordinated with #MEAction for May 12th and May 25th, #MillionsMissing global campaign in various cities (Washington DC, San Francisco, Seattle, London, etc.). You can also encourage your doctors, family, friends and other ME organisations to add their names.
It’s very simple to do: Just find “Chronic Fatigue Syndrome/M.E.”, have a look at the current map, then click on “Join the map” button, top right. The rest is quick and easy. You can add as much or as little to your profile as you like, choose to have your age shown, whether to allow others to contact you, etc.
South Australian Health and Medical Research Institute (SAHMRI)
Research participants wanted
Chronic fatigue syndrome: Leptin, interleukin 6 and clinical symptoms.
What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms in previously healthy and active individuals.
Because of these symptoms, quality of life of people with CFS can be extremely compromised. While the search for a clear-cut cause remains elusive, we believe that we can make a major contribution to a person’s quality of life by elucidating the biological basis of their clinical symptoms.
If the biology underlying the disabling symptoms of CFS is elucidated, we will be able to target treatments aimed at symptomatic improvement.
What is the purpose of this study?
To evaluate the relationship of the hormones (cytokines) Leptin and Interleukin-6 on the symptoms of Chronic Fatigue Syndrome. We can test these by using a blood sample. We are also embarking on the development of a genetic database for CFS.
Fibromyalgia pain levels can be predicted by leptin, according to research. Fibromyalgia is a condition with many diverse symptoms, the most common being widespread pain. Associated differing biological variables include elevated sedimentation rate (ESR), cytokine profile, and hormone levels. Diagnosing fibromyalgia is a challenge as there are no known biomarkers a patient can be tested for. For the study, researchers used the Vectra®DA, a multi-biomarker disease activity score, to measure serum biomarkers in patients with fibromyalgia and elevated inflammatory markers.
This cross-sectional study involved 33 patients from Los Angeles County. Patients displayed high results on the Vectra®DA, with mean score of 46.5 (range 30 to 84, or moderate to high activity). The serum concentrations of 12 biomarkers – with the exception of leptin – were found to be similar to those with rheumatoid arthritis. Forty-five percent of fibromyalgia patients had higher leptin levels.
The researchers found that the protein leptin plays an important pro-inflammatory and immunomodulatory role in the disease development in a clinical subgroup of fibromyalgia patients with elevated leptin levels. A better understanding of the leptin participation in the pathogenic processes of fibromyalgia may help diagnose the condition and offer better treatments.
Nath Digs Deeper Into Big NIH ME/CFS Study: Warns of Push Back
By Cort Johnson
Apr 24, 2016
The Solve ME/CFS Initiative’s webinar [see below] with Avindra Nath revealed again what an extraordinary study the NIH intramural study at its Clinical Center is. The Webinar started off with Dr. Nath stating that it was “such a pleasure” to talk to the chronic fatigue syndrome community, and that he was “absolutely thrilled” to be leading the study.
His interest in ME/CFS derives from the patients he’s seen over the years (he’s an MD) as well as patients he’s seen in the multiple sclerosis clinic. Fatigue, he noted, is the most disabling part of MS. Given the immune nature of that illness as well as the effects MS drugs can have on fatigue, he thought it was likely there was an immune basis to ME/CFS. (He also mentioned the Rituximab studies).
Note that this is Nath’s study. He’s the one Collins came to and he’s the one putting the study together. Because he’s a neuroimmune infectious specialist the study is heavy on nervous system and immune studies but because he also studied the literature (and talked to a lot of people) there are also exercise, autonomic nervous system and other components.
Given Nath’s background it’s no surprise that the study focuses on people with infectious onset. He believes an infection triggered the immune system to whack the brains of ME/CFS patients.
Nath didn’t put together just a study, though; he put together a three phase series of studies that he hopes will end up in treatments for ME/CFS. In its duration and scope the NIH study resembles the Open Medicine Foundation’s End ME/CFS project.
Both first deeply examine a limited number of patients, then test their results in a larger number of patients, and finally both envision finding/developing immunomodulatory or other treatments based on those results.
Both, furthermore, are employing top researchers and cutting-edge equipment at two of the top research centers in the world. Nath repeatedly pointed out in his presentation that several of the techniques being used were developed by the researchers who are actually participating in the study. Ron Davis’s lab at Stanford has developed many new technologies over time. During the course of his interest in ME/CFS he’s created a new, more accurate (and cheaper) way to study HLA genes.
The Undies on the Outside team and all third party contributors such as photographers, models, graphic designers, video editors and public relations profesionals, have donated their time on a pro-bono basis, and any out-of-pocket costs been covered by the team personally, or by those who’ve also donated their time.
We have not deducted any admin fees or expenses.
HOW DO I DO THE CHALLENGE?
It's easy! Take your photo, make your donation, post the photo to social media and cut & paste the following wording. Don't forget to nominate 3 people!
I’m a Superhero and wearing my undies on the outside to end ME/CFS! I nominate X, Y and Z to do the #UndiesChallenge
HOW DO I DO THE CHALLENGE? (post your photo then copy & paste these instructions)
Take a photo or video wearing your undies on the outside
Updated April 24, 2016, 9:21 AM US Eastern daylight time: An earlier version of this post had mashed together discussion of the end-of-treatment analyses with the follow-up analyses. That has now been fixed. The implications are even more serious for the credibility of this Cochrane review.
From my work in progress
My ongoing investigation so far has revealed that the 2016 Cochrane review misrepresents how the review was done and what was found in key meta analyses. These problems are related to an undeclared conflict of interest.
The first author and spokesperson for the review, Lillebeth Larun was also the first author on the protocol for a Cochrane review that is not-yet published.
At a meeting organized and financed by PACE investigator Peter White, Larun got privileged access to data that the PACE investigators have spent tens of thousands of pounds to keep most of us from viewing. Larun used this information to legitimize outcome switching, p-hacking. The Cochrane review misled readers in presenting how some analyses were conducted in the course of the systematic review.
One of the crucial function of Cochrane reviews is to protect policymakers, clinicians, researchers, and patients from the questionable research practices utilized by trial investigators to promote particular interpretation of their results. The Cochrane review and discussion fails miserably in this respect, with the Cochrane complicit in promoting misinterpretation of some key studies.
Fibromyalgia and Lyme disease are two illnesses that can cause fatigue and pain, but there are vast differences when it comes to their causes, symptoms, and treatment. Although it may be easy to confuse the two, they are very much different, and these differences can help aid in appropriate treatments.
Lyme disease is known as the “Great Imitator,” because it presents itself as many other illnesses. Furthermore, Lyme disease can affect any part of the body, so a doctor may be confused by the symptoms and try to rule out other conditions first.
Patients with Lyme disease are often misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and even mental illnesses like depression. Misdiagnosis of Lyme disease, and fibromyalgia, can be harmful as it can lead to unnecessary medications resulting in side effects and delaying the appropriate mode of treatment. This is why it’s so important to understand the differences between diseases that have common symptoms so that to find the appropriate treatment for each disease and start it early.