STUDY SHOWS GENDER DIFFERENCES IN CFS

Spanish study looks at the difference between men and women with CFS

Spanish researchers looked at the differences between men and women diagnosed with CFS (Fukuda criteria*) to identify any sex-related differences that may impact disease progression or management.

The biggest difference they found was in the onset of disease. The most common triggering factor was an infection, but more men reported an initial infectious process (26.9 versus 13.0%), while pregnancy-partum issues were precipitating factors in 11.3% of women.

Men were diagnosed at a younger age than women (43.0 versus 47.9 years), and became ill at an earlier age. Other major clinical differences are in immune and muscular symptoms. Immune symptoms were less frequent in men than women. Women had worse scores for physical function, physical role, and overall physical health on the MOS SF-36 questionnaire assessing quality of life. Also:

  • Raynaud’s phenomenon (19.3 in men versus 27.9% in women)
  • generalized morning stiffness (76.5 versus 83.7%)
  • migratory arthralgia (79 versus 86.4%)
  • drug allergy (16 versus 24.8%)
  • allergy to metals (6.7 versus 17.1%)
  • Muscular symptoms were less frequent in men: generalised pain (78.2 versus 90.9%), difficulty in fine movements because of pain (77.3 versus 86.1%), and muscle contractures (83.2 versus 89.6%).

The research included 1309 patients, 119 (9.1%) were men and 1190 (90.9%) were women, it was done at Vall D’Hebron University Hospital in Barcelona.

Further reading on the study: Sex difference in CFS from ME Research UK.

Study (in Spanish): Gender differences in chronic fatigue syndrome. Faro M, et al. Reumatol Clin, 2015 Jul 16.

*Further reading:  different case definitions from Invest in ME.

Study: Are myalgic encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis.

Study: A comparison of health status in patients meeting alternative definitions for chronic fatigue syndrome/myalgic encephalomyelitis.

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STUDY SHOWS GENDER DIFFERENCES IN CFS

AUSTRALIAN RESEARCH INTO ME/CFS IN ADOLESCENTS

Neurological biomarkers in paediatric ME/CFS

ME Research UK is contributing nearly $100,000 (£46,000) to a study looking for neurological biomarkers in adolescents with ME/CFS.

Murdoch Children’s Research Institute, at The Royal Children’s Hospital in the University of Melbourne, Australia is conducting the study.

It will study 25 adolescents diagnosed using the Canadian Clinical Criteria adapted for paediatricians and 25 matched healthy controls.

Both groups will have baseline functional neuroimaging, followed by 90 minutes of structured effortful thinking and learning activities (similar to school work), then have another brain scan.

Neuroimaging techniques have rarely been applied to understanding the impact of ME/CFS on the function of the developing brain. Now Dr Sarah Knight and colleagues in Melbourne will examine how the brain and its underlying functioning responds to mental exertion in adolescents with ME/CFS, using a variety of neuroimaging techniques.

There is good evidence of difficulties with memory, concentration/attention, and information processing in adults with ME/CFS (read a review) but little known about young people, particularly the role of mental exertion in worsening these symptoms.

The study began earlier this year and is expected to be published in 12-24 months.

Research into children and adolescents is important. As around 9,000 people under the age of 16 in the UK have the diagnosis and many more around the world. (figures from ME Research UK)

“Illness in youngsters has a particular poignancy; the transformation of a bright, active child into one who is unable to go to school or play with friends is something that touches us all. The report to the Chief Medical Officer in 2002 put it very well – the illness represents a substantial problem and potentially threatens physical, emotional, and intellectual development of children and young people, disrupting education and social and family life at a particularly vulnerable time of life.” – ME Research UK

ME Research UK put out an international call for biomedical research applications last year, and this was one of the applications which came in from very reputable institutions.

“Although we have funded mainly in the UK previously, we have funded internationally also – namely in Canada, Belgium, Sweden and Australia. We fund on the basis of the merit of the research application and not national boundaries”, explained Dr Neil Abbot, Research & Operations Director, ME Research UK.

More on ME Research UK’s neurological biomarkers research.

Murdoch Childrens Research Institute, University of Melbourne, Australia

In and outside the UK you can donate to ME Research UK

AUSTRALIAN RESEARCH INTO ME/CFS IN ADOLESCENTS

STUDY OVERTURNS OLD IDEAS ON MITOCHONDRIA

Mitochondria’s electrical system

New 3D microscopic images of mice show how mitochondria are arranged in muscle and now explain how muscle rapidly distributes energy into the cell for movement. Researchers believe the information will change the way scientists think about muscle function and open up a new area to explore in health and disease.

Scientists are reporting the first clear evidence that muscle cells distribute energy primarily by the rapid conduction of electrical charges through a vast, interconnected network of mitochondria — the cell’s “powerhouse” — in a way that resembles the wire grid that distributes power throughout a city. (NIH)

Mitochondrial dysfunction is one of the abnormalities in ME. In future, these findings mean scientists may use muscle biopsies or non-invasive imaging techniques to determine how defects in mitochondrial networks impact diseases.

The study looked at the distribution system that rapidly provides energy throughout the cell where it is needed for muscle contraction. Scientists used probes to prove that the mitochondrial “wires” were electrically conductive.

“Structurally, the mitochondria are arranged in such a way that permits the flow of potential energy in the form of the mitochondrial membrane voltage throughout the cell to power ATP production and subsequent muscle contraction, or movement. Mitochondria located on the edges of the muscle cell near blood vessels and oxygen supply are optimized for generating the mitochondrial membrane voltage, while the interconnected mitochondria deep in the muscle are optimized for using the voltage to produce ATP,” Dr Balaban explained. (NIH)

The research was conducted at the National Heart, Lung, and Blood Institute (NHLBI) and the National Cancer Institute (NCI) at the National Institutes of Health in Bethesda, Maryland. Originally, the ways of imaging were developed to look at HIV-1 infection and structural changes in melanoma cells.

This study appeared in Nature and you can listen to their 5 minute interview with the Dr Balaban.

The full paper is “Mitochondrial reticulum for cellular energy distribution in muscle”.

What is your opinion? Mitochondria and cellular energy production may be closely linked with exercise intolerance, do you think this information could help us understand why?

STUDY OVERTURNS OLD IDEAS ON MITOCHONDRIA

AUSTRALIAN HEALTH DEPARTMENT PINS ITS HOPES ON NIH RESEARCH

Senator asks medical research council about ‘remarkably small amount of funding since 2000’ and if they are funding GET or CBT for ME/CFS. This is the third article in the series, here is the first and second.

Australia has spent just $1.6 million since 2000 on research into ME and CFS, the Australian Department of Health told a Senate budget estimates hearing this week. This figure was revised downward after Senator Scott Ludlam asked the Department to look into it. Ludlam said ‘about two-thirds of the funding appears to be going to into research that, however worthy, actually has nothing at all to do with ME/CFS.’

“Can you correct either the record or point out how this research is directly relevant to the questions that I asked?”

Ludlam said Health bureaucrats sharply revised down estimates of how much research funding goes into trying to understand Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). They then clarified that there is no other Commonwealth support out there, either for people dealing with this condition, or for GPs. It is time this changed.

Professor Anne Kelso, CEO of the National Health and Medical Research Council (NHMRC, part of the Department of Health) identified four grants; two studies and two fellowships.

  • ‘A prospective study of the psychiatric & medical characteristics of post-infective fatigue & chronic fatigue syndrome’, (simplified title “Do some chronic fatigue states result directly from infectious illnesses?”), led by Prof Ian Hickie at University of New South Wales ($500,000) in 2001-2005
    Presumably this was for the ‘Dubbo’ study, published in 2006, which followed a group of people diagnosed Epstein-Barr Virus, Ross-River virus or Coxiella burneti/Q Fever to see who developed a prolonged illness (chronic fatigue syndrome).
  • ‘Respiratory and neurological health, symptoms and chronic fatigue syndrome in Australian Gulf War veterans’, led by Dr Helen Kelsall at Monash University ($58,000) [according the Australian War Memorial, 1800 Australians were deployed] in 2003-2004
  • Two five-year fellowships at the University of NSW for Prof Andrew Lloyd ($1,065,000) from 2008-2017

Kelso added that Lloyd has ‘had a long standing interest in ME/CFS’. Lloyd was one of the authors of the Dubbo study.

Lloyd’s presentation and his involvement in the University of NSW’s Fatigue Clinic both show his support for in cognitive behavioural therapy and graded exercise therapy as a treatment for chronic fatigue syndrome.

Also, Lloyd’s attention has turned to hepatitis C (“90 percent of my work has nothing to do with CFS”) and hepatitis C was in the NHMRC fellowship information on their website, the same fellowship the NHMRC is claiming is entirely for ME/CFS research.

Is Australia funding CBT or GET studies?
Ludlam asked if any of those four research papers were recommending or investigating cognitive behavioural therapy or graded exercise therapy. Kelso said she could provide that information and took the question on notice.

Emerge Australia, the peak group for Australian patients, said people with ME/CFS are entitled to better support, care and respect and that the lack of good quality research needs to be challenged.

“We believe that funding should go towards biomedical research which is uncovering important new findings. There is no good evidence to support the use of graded exercise therapy or cognitive behavioural therapy and there is important emerging evidence on genetic and immune markers for the condition, so we ask the Department of Health not to waste precious research dollars on those studies,” said Sally Missing, Emerge’s President.

Ludlam credited Emerge, ‘they do remarkable work’, and asked about federal funding to help them advocate for Australians.

“[Emerge] are getting by on basically bugger-all. A little bit of funding from the Victorian government, which I would acknowledge. Nothing at a Commonwealth level.”

Up to 242,000 Australians have chronic fatigue syndrome (including 94,000 with Myalgic Encephalomyelitis which is a narrower definition) and some are severely ill, unable to leave their bedroom or home and requiring help with daily activities of life. In the hearing, Ludlam said around 46 per cent are housebound and 6 percent bed bound.

“A huge cohort of people and there’s not even an accurate diagnosis…when are we going to start seeing some action?”

Setting up a Clinical Advisory Group and training doctors 
Ludlam raised the question of a Clinical Advisory Group for the illness and asked the Department for suggestions.

“I’m looking for anything, any suggestions or bright ideas from anyone at the table or in the room…because there is nothing going on,” Ludlam said. “What do we need to do to jump start support for these people?”

Senator Fiona Nash was quiet for a moment before saying the Department would take the question on notice.

The Health Department was asked about why there is no federal funding for support of people with the condition, advice about medical treatments, training of medical and allied health staff and dissemination of information. The Department took this question on notice as well.

Looking to the USA’s National Institutes of Health
In encouraging news, Kelso said she has been discussing the importance of research for this illness with the director of the USA’s National Institutes of Health, Dr Francis Collins. Kelso repeated Collins’ words to her, “it is time for a significant effort to understand it”.

“It is a very important syndrome, poorly recognised and it is clearly not understood.”

Kelso said the NIH’s recent announcements about research was excellent news because of the NIH’s budget and capability and would be an important stimulus for the field, potentially also for Australia, and ‘we hope for great things to come from that research’.

Kelso said there would be a new process for funding research which may help fields that are not getting many investigator-initiated applications. She also said letters from the public fed into consideration of priorities in the decision-making process.

Here is a video segment of the late night hearing (8:35 minutes long, no closed captions) and here is a transcript (scroll to the end as it was the last item discussed) . A follow-up to this story will be written when the Health Department provides answers to the ‘questions on notice’.

Follow @sashanimmo for updates.

AUSTRALIAN HEALTH DEPARTMENT PINS ITS HOPES ON NIH RESEARCH