ME :: Myalgic Encephalomyelitis
  CFS :: Chronic Fatigue Syndrome
  FM :: Fibromyalgia
  MCS :: Multiple Chemical Sensitivity

ABN 67 476 925 016   ME/CFS/FM Support Association Queensland Inc..
Tropical North Queensland Support Group
No 14, Nov/Dec 2006.Newsletter.

Phone (07) 4091 2970   Email: reynoldsn@dodo.com.au
    Website: http://au.geocities.com/me_not_cfs/

Greetings.
Yet again we discover there is another way of hitting the"fast forward" button! Time flies!

THANKS
  • Thanks again to Rosa Lee Long for her support and assistance.
  • Thanks to all the organisations that have donated the use of their meeting rooms.
CFS facts:

CFS patients are more sick and have far greater consequent disability than patients with chronic obstructive lung disease or cardiac disease.
Fewer than 16% of sufferers in the general population are diagnosed and treated.
The more severe the acute illness at onset, the worse the post-infection CFS.
Psychological factors play no role in post-viral CFS
CFS is NOT a psychological or psychiatric disorder
Quoted from the WA ME/CFS News, Spring 2006

MEMBERSHIP
The Queensland Association can only operate successfully if we join with them as financial members.

  NEWSLETTER
  • Contributions to this newsletter are always welcome: recipes, jokes, personal stories and victories etc.
  • If you don’t require this Newsletter, please mark it “return to sender” and post it back to us.
  • Please let us know if you have email. It will save us postage.

DONATIONS
We are now able to receive donations direct into our Bank Account via the Bendigo Bank.     BSB 633-000   A/c No 114 607 336.
Your support will ensure the financial survival of this support group. Thank You !

FUNDING GRANTS
We have again received funding grants.
The Gambling Community Benefit Fund have enabled us to purchase a photocopier.
The Reef Casino have enabled us to purchase a new office computer.
Finally we can replace the ancient private computer that crashed nearly 18 months ago. The laptop is already starting to show signs of decline.
We publicly thank both those organisations for their support.

  YOUTH: Information and support in Queensland:
Gold Coast Young AdultsJanet Green(07) 5530 3924
Qld Youth InfoJohn Dalyjohnwdaly@ourbrisbane.com
Far North QldBulletin Boardhttp://au.geocities.com/me_not_cfs/
Youth Websites:
Australian site for teens with ME/CFShttp://groups.yahoo.com/sleepyteenzzz/
Youth with ME/CFS, FM, orthostatic intolerancehttp://www.pediatricnetwork.org
Canadian ME/CFS Youthhttp://www.mefmaction.net
UK ME/CFS Societyhttp://www.afme.org.uk
UK Youth with ME/CFShttp://www.ayme.org.uk
UK Youth with ME/CFShttp://www.tymestrust.org
USA site for teens with CFIDShttp://us.geocities.com/sleepyteenzzz/index.html
  Useful CFS WEBSITES:
Queensland Association websitewww.users.bigpond.com/mefmtba/
The Australian Society websitewww.mecfs.org.au
Victorian Society websitewww.vicnet.net.au~mecfs
NSW Society websitewww.zip.com.au/~mesoc

Legal support: If you are facing a medical examination to prove your CFS is a Disability. Please ask for an "Assessment procedure" Kit to give to the physician BEFORE you have your medical to ensure you get a fair assessment for your Insurance company or Centrelink.

LOCAL CONTACTS
Please feel free to call local contacts:
Atherton:Neil Reynolds4091 2970email
Cairns:Neville Pedler4053 6187email
Cardwell:Joy Dickson4066 0178email
Gordonvale:Irene Murgatroyd4056 1148
Innisfail:Gwen Hammerton4063 2334email
Lake EachamJohn Cuff4095 3063email
Mareeba:Christel Venturi4092 3287
Mossman:Sue Dennis4098 1637
Mossman:Helen Steley4098 8143email
Ravenshoe:Les Buglar4097 0132
Smithfield:Peter Cummins4057 5920email
Townsville:Mara Hogan4779 2478email
Townsville:Ashley Hinds4778 3560email
Townsville:Marta Botta4773 9972
    Disclaimer:

Please note that information provided is given in good faith. No Liability will be accepted, as the information is not intended to replace professional medical help and treatment.

  Copyright:

Information provided by this group has been given for the education and training of the disabled. This material may be subject to copyright, and as such the user is only permitted to retain documents for their own use. Any other use or copying must be approved by the copyright holders.

  Chemicals:

Many people attending meetings are sensitive to chemicals and scents. For the comfort of others, please refrain from wearing perfumes or strong scents. Please do not bring agricultural chemicals or tobacco odours to the meetings.

  MEETING CALENDAR FOR NOVEMBER/DECEMBER 2006
Thursday16th NovemberTownsville12:30 pm at Thuringowa Council, Hodel Room.
Thursday16th NovemberTownsville6:00 pm social at Sizzlers. Phone Mara to book.
Saturday18th NovemberCardwell2:00 pm at the Reef Information Centre
Saturday25th NovemberCairns9:30 am at Ireland's Training Rooms, off O'Leary Street
Wednesday29th NovemberMossman9:30 am at the Community Health Centre
Wednesday29th NovemberSmithfield2:00 pm at the Marlin Coast Community Centre
Saturday2nd DecemberAtherton9:30 am at the Neighbourhood Centre, 38 Mabel Street
Saturday2nd DecemberMareeba3:00 pm at Mareeba Bowls Club, Anzac Avenue
Tuesday5th DecemberGordonvale9:30 am at Warren Pitt’s, 94 Norman St
Tuesday5th DecemberInnisfail2:00 pm at the Brothers Leagues Club
Saturday16th DecemberRavenshoe2:00 pm Christmas Party at Archer River BYO everything

INFORMATION PAGES.

Gaucher's disease.

This illness has many symptoms similar to CFS:
Anaemia, fatigue, gastro complaints and osteoporosis.
People with one or two Jewish parents are statistically likely to inherit this illness. If this is you, perhaps you could consider you have Gaucher's instead of CFS. Check it out !

MEDICAL PAGES:

IS CFS A BRAIN DISORDER?

PART 1     By Gudrun Lange, PhD,UMDNJ-New Jersey Medical School

The cognitive problems CFS patients report have led to numerous research studies to assess neurocognitive impairments. Although data is not consistent, research confirms both structural and functional brain abnormalities in CFS.

Trouble concentrating. Poor memory. Difficulty processing information. Cognitive difficulties are among the most debilitating of CFS symptoms. These problems, often referred to as "brain fog" by patients, are more than just a nuisance or frustrating. They can be functionally disabling and severely limit school or job performance, even contributing to school failure or loss of career in some patients.

Cognitive problems have been reported in as many as 85-95% of patients, and neurocognitive studies from a significant body of CFS research to date. Researchers have focused both on the anatomy/structure of the train and the function of the brain in CFS patients to determine if there are abnormalities that might account for the unpaired cognitive function. Although CFS patients describe their cognitive problems as very prominent and disabling, when measured using objective neuropsychological assessment tools, the deficits detected are often labelled as "subtle" or "not statistically significant." However, statistical significance can't be equated with clinical significance. Most researchers now acknowledge that the central nervous system - the brain and spinal cord-somehow plays a role in CFS. The scientific literature, however, is full of conflicting studies, and the exact nature of the neurocognitive impairment is still unclear.

What accounts for conflicting results?

Some of the factors contributing to inconsistent results in neurocognitive research are as follows:

  • A standard neuropsychological test battery to assess cognitive function isn't used across studies, prompting differing interpretations of test results.
  • Some studies rely on rater-dependent data analysis techniques that could introduce bias.
  • Technological aspects of the studies often differ, affecting results. SPECT cameras can range from single- to triple-head cameras; MRI scanners can have a field strength of either 1.5 or 3.0T.
  • Investigators using the SPECT technique often use the cerebellum to normalise their data, assuming that flow in this region of the brain is similar between groups. Based on some reports, this may not be the case.
  • Due to technical limitations, some studies only have two image slices available for analysis whose thickness is not always noted, while others are able to analyse contiguous slices of the entire brain.
  • When neuroimaging studies are task-dependent, the behavioural paradigms used to evaluate brain function are rarely identical or even similar across studies, so they need to be described thoroughly.
It's also possible that we haven't yet discovered what area of the brain to study in CFS, or whether the technology now available can give us the answers we seek.

Cognitive deficits

In spite of methodological limitations and conflicting studies, there are some consistent findings about brain function from neuropsychological testing. Impairments in numerous cognitive domains - acquiring new information, processing information, attention, concentration, verbal memory, visual memory, reaction time and psychomotor function - can be found in the scientific literature on CFS. The most consistent findings, however, are slower reaction time, poorer performance on complex attentional and memory tasks and slowness in acquiring new information. This suggests that slowed cognitive and motor speed appears to be a basic underpinning of cognitive difficulties in CFS.

Neuroimaging study results

Investigators have used brain imaging technology to examine whether people with CFS have structural and/or functional abnormalities. Both have been found. Here are some of the key findings:

  • Several structural MRI studies conducted in the 1990's found abnormalities in cerebral white matter, usually small hyperintensive (bright white spots or lesions). It appears that CFS patients who don't also have a psychiatric disorder like depression are much more likely to have white matter abnormalities than CFS patients with depression.
  • Three recent studies have found evidence of cerebral atrophy. This means the brain has decreased in size, possibly due to the death of brain tissue. Our UMDNJ group found indirect evidence for white matter loss, and two recent studies reported a significant reduction in cerebral grey matter (see box No.l).
  • Numerous dynamic imaging studies have now shown reduced cerebral blood flow, called hypoperfusion, in CFS patients. Reduced cerebral blood flow has been found globally as well as in the lateral frontal, lateral temporal and medial temporal lobes. The research suggests that CFS patients, particularly those without concurrent psychiatric conditions, suffer from widespread cerebral hypoperfusion.
  • Several studies have found abnormal brain metabolism in CFS patients. Abnormal cerebral glucose metabolism, decreased acetylcarnitine uptake and abnormalities in the serotonergic neurotransmitter system are the reported findings.
  • Our UMNDJ research team used BOLD fMRI in a 2005 study which found that CFS patients are able to process challenging information, but they utilise more extensive cerebral networks and have to exert greater effort to process auditory information. Brain activation in CFS, particularly in patients without concurrent psychiatric illness, is significantly more diffuse than normal.
  • A 2005 study found that 30% of CFS patients had higher protein levels and/or white blood cell counts in spinal fluid than normal. CFS patients without depression or other psychiatric comorbidity were more likely to have abnormal spinal fluid, suggesting that this subset of patients may suffer from central nervous system immune dysfunction.
  • Due to work from our research group and many others, it appears that CFS patients who don't have a concurrent psychiatric disorder are the ones with the most severe cognitive difficulties and the most pronounced abnormalities in neuroimaging studies. This suggests subtyping CFS cohorts by the presence or absence of depression and other psychiatric disorders may be very useful in subsequent studies.

Box I

Two Studies Find Gray Matter Reduction in CFS Patients

Cognitive difficulties are found in 85-95% of CFS patients. Now, cutting-edge research from two independent international groups suggests that the volume of grey matter in the brain is significantly decreased in CFS.This decrease in brain tissue, or cerebral atrophy, may be responsible for cognitive problems in some people with CFS.

The most recent of the studies, conducted in 2005 in the Netherlands, used MRI technology to measure brain volume and tissue concentration, finding that the volume of grey matter in CFS patients was significantly decreased. What is especially interesting about this study is that after researchers found structural abnormalities in a first CFS cohort, they repeated the experiment in a second cohort of equal size and found the same results. In all, 28 patients and 28 healthy controls were tested. The researchers, led by Floris de Lange, report that when results from both cohorts were combined, the reduction in grey matter tissue in CFS patients was 8%.

This echoes the 2004 findings of a Japanese research group led by Tomohisa Okada, MD, PhD, which observed "a significant reduction in grey matter volume in the bilateral prefrontal areas of CFS patients". Investigators found an 11.8% volume reduction in the 16 CFS patients compared to the 49 healthy controls.

Both studies used a technique called voxel-based morphetry (VBM) to measure the results of the brain scan. Unlike assessment techniques that rely on human observers and rating scales, VBM is an automated procedure that provides unbiased results. While grey matter reduction was found in both studies using VBM, neither study found white matter abnormalities.

Although we don't know if the observed cerebral atrophy is a cause of CFS or a consequence, these findings are alarming some members of the CFS patient community, who are concerned about "brain damage". It's important to note that the studies are small and need to be replicated by other researchers before definite conclusions can be made. And even if the results are confirmed by future investigators, the brain has a remarkable ability to adapt and to "rewire" itself in compensatory ways. Research shows that people with CFS may use more extensive regions of the brain to process tasks and information, perhaps compensating for deficits in specific areas of the brain. There are rehabilitative techniques patients can employ to help with cognitive problems.


What can we say for sure?

We know CFS patients, especially those without concurrent psychiatric illness, are generally slower mentally as well as motorically, but often not to a "statistically significant" degree. This slowness can impact higher cognitive functions, such as memory and executive function.

What we don't know is what causes the slowed latencies observed in CFS patients. Hypotheses abound. Some investigators claim that an infectious process may be responsible, while others suggest cardiovascular problems may be at the root of the cognitive problems. Could the reduced cerebral blood flow found in CFS be linked to the cerebral atrophy and cognitive problems found in some patients? We don't know at this point whether the brain abnormalities observed are caused by underlying immunological or physiological processes or whether these neurological problems are the cause of other abnormalities observed in CFS.

In my opinion, it's premature to conclusively point to specific brain abnormalities, whether of a structural or functional nature. Better characterisation of study samples and imaging protocols, as well as replicating and combining different techniques, is necessary before we can be conclusive about brain abnormalities in CFS and the role the central nervous system plays in this illness.

Will Technology Reveal the Answer?

New neuroimaging techniques are revealing more and more about CFS. The integrity of the brain of CFS patients is being evaluated using both static and dynamic imaging tools. There is hope that utilising a combination of these tools under strict study protocols may someday give us conclusive answers about the role of the brain in CFS

  • MRI, magnetic resonance imaging, is the static technique most often used in CFS. It's used to detect brain lesions, the presence of white and grey matter abnormalities and decreases in brain volume.
  • fMRI, functional MRI, a newer dynamic technique, is used to assess the functional integrity of the brain in CFS patients.
  • BOLD fMRI, blood oxygen level dependent functional MRI, is not invasive since no radioligands are involved, so task-related activity can be imaged multiple times.
  • SPECT, single photon emission computed tomography, is a dynamic technique used to measure global and regional cerebral blood flow either at a resting state or during task performance.
  • PET, positron emission tomography, has been used to provide data on cerebral blood flow and metabolism in CFS.
  • H-MRS, proton magnetic spectroscopy, is used to assess the concentration of brain metabolites in CFS patients.
  • VBM, voxel-based morphometry, is a technique for computational analysis of differences in global and local grey and white matter volume from MRI images. Unlike many morphological assessment tools, which require human observers and subjective ratings. VBM is fully automated, so results are more objective.

PART 2.

New research into chronic fatigue syndrome suggests that it may be caused by temporary brain injuries resulting from a bout of glandular fever.

Australian scientists have monitored the health of people infected with the Epstein-Barr virus, which causes glandular fever, and found that those who go on to develop chronic fatigue syndrome are likely to have suffered trauma to the brain during their illness.

Professor Andrew Lloyd from the University of New South Wales says their findings show that chronic fatigue syndrome is a real condition.
"I personally have never had a doubt that it's real because there are people who have got a set of symptoms that are unexplained," he said.
"The real versus not real thing is often caught up in the mistaken notion about malingering or it's all depression but really there's no evidence to support that."
"So in a nutshell yes, it clearly supports the argument that it's real."

Professor Lloyd says it seems that some people with glandular fever suffer a brain injury of some kind that leads to chronic fatigue syndrome.
"It's an injury in the sense that it wasn't there, people were perfectly well, something in the acute phase of the illness went wrong and then it slowly recovers like a broken arm or a broken leg, it's just that in this case its taking weeks to months rather than days or quicker," he said.

Victorian CFS newsletter, EMERGE, Winter 2006

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STOP PRESS !

VISIT BY PHILLIP DAY.

Once again Phillip shared his ideas on health. This will be reported in the next Newsletter. We did advise everytbody who has email. Sorry, it is virtually impossible to contact everybody at short notice in any other way.

We had hoped, in collaboration with Community Health, to arrange a series of Public Health Seminars to replace the November/December round of meetings.

The vision was that we could share these meetings with other health support groups, thereby reaching wider into the community and provide the opportunity for networking and sharing resources. Community Health has agreed to this in principle, but have been hit with Health Department structural changes, and functional relocation to other Departments. Even though the idea was originally floated in August, there has been no advancement because the key players have had leave and temporary job re-assignments.

We are now in negotiations on how to combine these Seminars with our 2007 Annual CFS Awareness Week meetings. We also need to write to the dozens of other Support Groups advising them of these ideas, and to invite their participation. We do have listings of some of these, but would appreciate extra input about other groups that we may not know about.

COORDINATOR'S MESSAGE

The TNQ Support Group Coordinator has had a short health relapse since the August meetings, and we apologise for the late notice and lack of communication. If you have been promised information or advocacy, please send us a reminder, as some commitments were not recorded. Hopefully the provision of a photocopier on site will make life easier, and reduce the need for massive stocks of pamphlets and articles.

We wish you all the best of health, and pray that you are able to enjoy the Christmas festivities and take a break from the routines.

If you are not able to come to this round of meetings, we hope to see you happy and healthy in 2007. Don't forget to tell us about your ideas for social gatherings and contributions of articles for the next Newsletter.

Neil and Claudia Reynolds.

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