I am currently recovering from some reasonably serious illness – diseased kidneys, internal bleeding, and kidney stones. Before that, I was ill for months with Chronic Fatigue Syndrome (CFS), which is something that will return to plague me again (often after a serious illness – so I’m ripe for it again sadly). Now I have been asked to vacate the apartment that I am currently renting (through no fault of my own I should add), which I could have done without while trying to recover.
There are now boxes all over the place, some things are packed ready to go (not that I have anywhere to go just at the moment – I do have some applications in) and other things are not yet packed or are in the process of being packed. So as you can imagine it is all a little chaotic at the moment. I also still have to work, of course, look for another place to live, etc, etc, etc. Anyway, the point of this diatribe is simply to say that I will be attempting to post as often as usual, but that you should expect interruptions over the immediate future period until I am able to settle into some new place of abode and have my routine back in place.
I’ll be taking a week off from the Blog (at this stage – may be longer) due to a resurgent CFS (Chronic Fatigue Syndrome). I have been battling this ‘outbreak’ for about 6 weeks and there has been very little improvement, so I need to take some ‘health time.’ Back when I can be.
Chronic fatigue syndrome, or myalgic encephalomyelitis, is a highly debilitating, but often misunderstood, disorder.
As its name suggests, the illness is characterised by profound fatigue, muscle and joint pain, and impaired memory and concentration. Sufferers also experience impaired cardiovascular function, gut disorders, and sensory dysfunction, such as noise intolerance and problems with balance.
The symptoms tend to be so deliberating and severe that chronic fatigue patients often experience family and social breakdown and isolation. Many cases can continue for months or years, and often symptoms don’t improve with rest.
Chronic fatigue syndrome was trivialised for years due to the lack of scientific evidence supporting its diagnosis, and dismissed as the “yuppie flu”. Sufferers continue to endure the stigma of a condition that is often poorly recognised by the medical community and treated with scepticism by family, friends, and co-workers.
All this despite the fact that chronic fatigue is thought to have a global prevalence rate of 0.2 to 2.6% . A conservative estimate puts the number of people in Australia with chronic fatigue disorder at 180,000.
Chronic fatigue predominantly affects young adults between the ages of 20 and 40 years. The female-to-male diagnosis ratio is six-to-one but why the disorder is more prevalent in women than men is unknown.
Managing chronic fatigue syndrome can be as complex as the illness itself. There is no cure and no prescription drugs have been developed specifically for chronic fatigue syndrome, making it very difficult to treat. Symptoms can also vary over time.
People with chronic fatigue syndrome should closely monitor their health in conjunction with their doctor to create an individualised treatment program that best meets their needs. This program should be based on a combination of therapies that address symptoms, coping techniques and ways to manage normal daily activities.
It’s crucial that we discover a biological basis for chronic fatigue so we can start working out ways to better treat the condition.
Diagnosis is a lengthy and expensive process, as a host of other diseases that share symptoms have to be excluded. Given that diagnosis is notoriously difficult, finding unique markers of the illness has been a focus of research for over 20 years.
Researchers have observed significant differences between the immune cells of chronic fatigue sufferers and healthy people. This discovery could potentially lead to the identification of chronic fatigue biomarkers (examinable biological indicators that can be used for diagnosis).
This, in turn, could lead to the development of tests that detect chronic fatigue rather than having to rely on reported symptoms.
Other researchers have identified a strong association between chronic fatigue syndrome and a deregulated (or ill-functioning) immune system, which might point to the underlying mechanism of the disorder.
In sufferers of chronic fatigue, the researchers observed that the function of “natural killer cells” — immune cells that have the ability to kill off infected cells in the body – was reduced. This means they’re unable to remove pathogens effectively and efficiently.
And Australian researchers have discovered changes in a number of other immune cells that are required to fight viruses in people with chronic fatigue.
In particular, they’ve have identified specific changes to the gene that controls these cells, and the receptors that activate them. This suggests there is a possible explanation as to why these cells are able not functioning effectively and efficiently.
Collectively, these results provide the first steps towards a system for the early diagnosis of chronic fatigue. They may also provide evidence that these changes in immune function are involved in the cause of the disorder.
But while the findings have the potential to bring relief to many chronic fatigue sufferers, research is still in its preliminary stages. At this juncture, researchers are testing these potential biomarkers against a number of other diseases to ensure they’re unique to chronic fatigue syndrome patients.
With a better understanding of the biological causes of chronic fatigue, we can not only tackle the symptoms of chronic fatigue, but the stigma as well.
Around 200,000 people in Australia suffer from a debilitating illness often branded with the unfortunate name of chronic fatigue syndrome (CFS). I say “unfortunate” because this implies patients are simply tired, run-down, burnt-out or overly stressed.
But myalgic encephalomyelitis, or ME/CFS as it is now more commonly called, is a serious and incapacitating disease that can have a devastating impact on a patient’s life. Symptoms include:
profound and unexplained fatigue for more than six months
memory or concentration difficulties
muscle pain (myalgia) and weakness
light headedness, palpitations, breathlessness
heightened sensitivity to light and sound
tender lymph nodes, sore throats
new sensitivities to food, medicines or chemicals.
Initially bewildered by their incapacitating fatigue, many ME/CFS patients continue trying to go about their daily lives. But such efforts come at a severe cost. Even small amounts of activity can trigger “crashes” called post-exertional malaise that worsen symptoms, sometimes for many days.
Simple activities such as showering, grocery shopping or meeting a friend for coffee become difficult, if not impossible. Sadly, for around 25% of patients, symptoms are so severe they remain bed-bound or house-bound, and suicide risk is elevated.
The underlying causes of ME/CFS have proved difficult to pinpoint. For many patients, blood and pathology testing are entirely normal.
This has led some to suggest ME/CFS is a psychological condition. In 2011, the findings of a clinical trial suggested patients could recover through psychological therapy (cognitive behavioural therapy or CBT) and graded exercise therapy. These findings have fuelled debate as to whether ME/CFS might be a disease of the mind.
But a landmark US study examining nearly 10,000 research publications suggested otherwise, concluding that ME/CFS is a serious, chronic, complex and systemic disease.
There are no laboratory tests available to categorically diagnose someone with ME/CFS. But Australian research is playing a leading role in the discovery of possible diagnostic markers. For example, inflammatory blood proteins such as activin B and interferon are increased in ME/CFS. Other studies have shown metabolic waste products from some gut bacteria accumulate in ME/CFS patients and so may also provide diagnostic information in the future.
Women are four times more likely to be diagnosed with ME/CFS than men, but the reason for this is unclear. Also, having a first-degree relative with ME/CFS more than doubles the risk of developing the disease, but the role of genetics is not known.
While ME/CFS patients have immune disruptions and abnormal inflammatory responses, the underlying causes remain elusive. The vicious cycles of tissue damage typical of autoimmune diseases such as multiple sclerosis or lupus don’t seem to occur in ME/CFS.
But it’s remarkably difficult to find direct evidence for such ongoing infections in most ME/CFS patients. And antiviral drugs or antibiotics seem to have very modest activity in ME/CFS despite their life-saving activities in many other infectious diseases.
ME/CFS patients also have metabolic defects in the way energy is generated in their bodies – pointing to one reason why they rapidly succumb to muscle fatigue during exercise. But whether this metabolic defect is due to immune attack, chronic infection or some other cause is unknown.
ME/CFS patients should always consult their medical doctor before taking any medication. More information can be found at Emerge Australia. Anyone seeking support and information about suicide can contact Lifeline on 131 114.
Chronic fatigue syndrome involves experiencing a disabling level of fatigue for at least three months, where medical tests fail to show a biological cause. Adults, adolescents, and children can experience chronic fatigue syndrome. About 1% of youths develop the syndrome, which greatly affects their mood and decreases school attendance.
A research article published recently in the journal Archives of Disease in Childhood reported the effects of an intervention called the “Lightning Process”. The study found the Lightning Process added significantly to the effects of the usual treatment in the UK for chronic fatigue syndrome in youths.
The results immediately attracted media attention. But while the study did show a positive outcome, there are a few limitations that may have affected these results and should be mentioned.
The Lightning Process is a psychological intervention developed by British osteopath Phil Parker. The 12-hour intervention, provided over three days, was developed for chronic fatigue syndrome, as well as other disorders.
Instruction on the stress response, on how the mind and body interact, and on how thoughts can have positive or negative effects;
Group discussion about these topics and about what trainees can change;
Individual identification of a relevant goal each participant wants to achieve, and the thinking that might help the person achieve the goal, such as walking more.
The Lightning Process has generated controversy because of claims of its effectiveness in the absence of solid evidence. It has also attracted criticism because it is a psychological intervention for a medical problem, which some sufferers perceive as undermining the severity of their symptoms.
What exactly did the study find?
The study was the first randomised controlled trial (meaning half the people in the study were allocated to receive the intervention, and half were not) of Lightning Process for chronic fatigue syndrome in youths aged 12 to 18. It compared the usual treatment in the UK, which involves gradually increasing activity level, to the usual treatment plus 12 hours of Lightning Process.
The results showed better outcomes for the group receiving Lightning Process. These better outcomes involved fatigue, physical functioning, anxiety, and school attendance over periods of six to 12 months. Participants in the usual treatment group also improved significantly over time, but not as much as those who received the Lightning Process.
How well done was the study?
The study procedures were published prior to the start of the study, making it hard to change methods to produce a desired finding. Participants were assessed using mostly well-validated measures before the intervention and for many months after.
The study had three notable weaknesses in its methods. These weaknesses limit how much can be made of the findings.
First, both the therapists and the clients knew which treatment they received. Hence, the zeal of the therapists or the desire of participants to please the researchers could have helped produce results in favour of the Process. Placebo effects may also have occurred: when participants think they’re getting a new, experimental treatment, placebo effects can lead to real or imagined improvements.
Second, the school attendance reports came from the young people themselves. It would have been more valuable to gather this information from official records.
Third, the Process participants received 12 extra hours of treatment. Hence, it’s not clear whether they improved more due to the content of that extra treatment or due to receiving more treatment.
What questions might be answered in the future?
The study showed a general problem in treating chronic fatigue: most of the potential participants with chronic fatigue syndrome who were contacted about entering the study chose not to enter. Also, some who entered the study failed to complete the intervention. No treatment works for someone who does not receive it. Attracting more young people with chronic fatigue to treatment remains a challenge.
The study did not compare Lightning Process with cognitive behavioural therapy (CBT) for chronic fatigue. Of all treatments for chronic fatigue syndrome, CBT has the most evidence of producing positive effects. A meta-analysis of many studies showed that CBT tends to lead to moderate benefits. The Process intervention has instructional, cognitive, and behavioural components that are commonly included in CBT. So the Lightning Process could produce similar outcomes, given that many of these components overlap.
What comes next?
The study findings are important enough to suggest that more research on the Lightning Process is warranted. But the findings are from a single study, with a single set of researchers. As such, they do not justify a conclusion that someone with the disorder ought to seek this specific treatment.
If other studies with different researchers find something similar, then we might consider the intervention empirically supported for use in paediatric chronic fatigue syndrome.
A trial comparing Lightning Process to CBT would be valuable. Parents of young people suffering from chronic fatigue would like solid evidence about which treatment is most likely to help. – John Malouff
I agree with the Research Check that this study has limitations, but I would perhaps be stronger in my criticisms of the study, as I think there are a few that haven’t been mentioned.
The treatment options the participants received were not standardised, and so because of the variety of treatment options available it’s difficult to evaluate what treatment worked best. All individuals also received a different number of sessions, which would have also impacted on the results from the study.
One point I would also raise is that the criteria used for diagnosing those in the study with chronic fatigue were very broad and did not take into account other criteria that are recognised in diagnosingchronic fatigue.
For these reasons, I think more research is needed before we can say this treatment has a benefit. Participants in the study should follow a standardised treatment and should not know which group they belong to in order to avoid a placebo effect. I would also make the suggestion researchers consider using a better method for establishing these individuals do suffer with chronic fatigue. – Lynette Hodges
Statement from the study author, Esther Crawley
I did a press briefing because it was important to me that the limitations and implications of this study were clear. For example, it was important to me that children with CFS/ME [chronic fatigue syndrome/myalgic encephalomyelitis] and their parents understood that we have only tested LP [Lightning Process] in addition to specialist medical care. And that we could not say anything about adults with CFS/ME. I wanted it to be clear that many eligible children did not take part and some said this was because they didn’t want LP. I think most of these points were picked up by the press and on the whole, I was pleased with the reporting.
So this has been the scourge of my adult life really – Chronic Fatigue Syndrome. I first fell ill with it in late 1989 – early 1990. It is a dreadful illness. The link below is to an article that takes a look at this affliction.