CHRONIC FATIGUE SYNDROME.
How can you live with chronic fatigue syndrome?
Please kindly note that the author provides this for informational purposes and is unfortunately unable to take on new patients.
What is Chronic Fatigue Syndrome (CFS)?
We all get tired to tired from time to time but people with CFS have a level of persistent fatigue that is on a different level. The person affected by CFS will not be able to function normally day to day.
The fatigue of CFS is ongoing and is not explained by any other medical condition. Blood tests are normal. The diagnosis can usually be made by the GP on the basis of history, physical examination and blood tests.
There are formal case definitions used for research purposes. However, the precise criteria vary between different case definitions. For example, the requirement for symptoms to be present at least 6 months was dropped by the 2011 “International Consensus Criteria.”
So let’s summarise the main symptoms:
- The fatigue is severe
- The fatigue is intrusive to the person’s ability to function
- The fatigue is worse with exertion (which may be minimal).
- There is often forgetfulness and/or poor concentration.
- The fatigue is not improved with a good night’s sleep
- There is a long list of potential symptoms such as headaches or aches, pains but these may not be present.
CFS is also called “ME” (Myalgic encephalomyelitis) which was the original (some would say historical) term which incorporated (back then) an understanding of the symptoms of muscle ache (myalgia) and cognitive difficulties (encephalomyelitis).
CFS is still thought of by many clinicians as purely a diagnosis of exclusion – in other words, fatigue with no explained cause. That may be unhelpful because of the implication that there are is no reason or explanation for the fatigue. Sure, blood tests are normal – but research is uncovering the biological changes that occur in CFS sufferers that will in time lead to new treatment options.
CFS is commonly triggered by a viral infection but it remains currently unknown why CFS may subsequently develop. Take influenza as an example. Anyone with influenza will feel very sick for a few days. Once the virus has left the system, though, it’s normal to feel tired for a few days after. Some viruses lead to longer fatigue than others an Glandular Fever is a well known CFS trigger. It’s important to bear in mind that The virus itself will have left the body well after any CFS has developed.
There is increasing evidence of biochemical changes in the muscle, brain and immune system. Research published in 2015 suggests, for example, that immunological molecules called cytokines increase and then drop off as the CFS starts to burn out – this specific evidence does need to be replicated but is an example of what researchers are unearthing. It’s not currently known which changes are a result of the condition and which may be causing the condition.
Which tests might be needed?
Your GP will Blood Tests to rule out other causes of chronic fatigue. Studies show that around 1 in 8 people with chronic fatigue have an abnormal blood test, of whom around a quarter have diagnosis other than chronic fatigue syndrome – The figures from different studies vary. The point is that blood tests are expected to be normal and it helps to know that up-front.
Blood tests usually arranged include: Haemoglobin, kidneys, liver function, thyroid, blood sugar. Other blood tests may be added as required (eg. Coeliac disease screen).
It should be emphasized that blood tests often come back “slightly abnormal”. Standard biochemistry and haematology tests (FBC/E/LFT) report on around 30 parameters – and that’s not including extras. The chances of 2-3 tests coming outside of the “normal range” (defined as 95% of people) are high. Most of these mildly abnormal blood tests will not explain the fatigue.
There is a small correlation between iron deficiency and fatigue. Iron deficiency should be treated with oral iron supplements. An Iron Infusion may be recommended if iron supplements are causing side effects or not working.
Blood Tests often cause confusion or concern in CFS Circles. The following tests results are very common in the general population and do not normally explain CFS:
- A low titre ANA (anti nuclear antibody) – around 5% of the population
- Positive IgG to glandular fever virus (this result means past exposure to glandular fever, different from IgM which is a recent infection) – most adults have this antibody which remains positive after exposure or infection to glandular fever (this usually occurs in childhood). 95% of adults age 40 test positive.
You can get tested for antibodies to viruses.The IgG antibody remains positive lifelong after exposure to a virus, whereas IgM remains positive only for a few months after exposure. By the time CFS has developed, the IgM test will probably be negative & it wouldn’t then be possible to identify whether exposure to the virus started 9 months ago, 2 years ago or when you were a child. For this reason, testing for viruses is generally not very helpful.
The point of the blood tests is to exclude other causes of chronic fatigue.
What is the treatment for Chronic Fatigue Syndrome?
CFS sufferers are clearly low in energy. This suggests being low in “something.” It is a logical thought that a medicine or remedy needs to be given to give the energy back. Sadly, the evidence for supplements is not great. The UK NICE CFS guideline is states:
“There is insufficient evidence for the use of supplements – such as vitamin B12, vitamin C, co‑enzyme Q10, magnesium, NADH (nicotinamide adenine dinucleotide) or multivitamins and minerals – for people with CFS/ME, and therefore they should not be prescribed for treating the symptoms of the condition. However, some people with CFS/ME have reported finding these helpful as a part of a self-management strategy for their symptoms” – in other words, there’s no great evidence that they work but won’t do any harm and might help.
CFS may burn itself out eventually. Each person’s CFS is different with some returning to normal health, others waxing and waning, and a “significant minority who remain seriously affected”. Setbacks are a normal part of life with CFS – having a plan on how to deal with a relapse is important. The good news, though, is that most people do eventually get better. This is little consolation, however, to the small number of sufferers who experience long term symptoms.
Research strongly shows that it’s best to think of how to manage the fatigue in multiple ways rather than hope for a single quick-fix.
Most people with CFS experience disruption of sleep. Common sleep problems are
- Excessive sleep (Hypersomnia)
- Not enough sleep (Insomnia)
- Reversal of the sleep-wake cycle – being sleepy in the day but not at night
- Sleep that is not refreshing
Fatigue is different from sleepiness. CFS sufferers often go to bed exhausted but don’t get a good sleep.
The way forward is to look closely at sleep hygiene and ways of improving sleep. Specific to CFS, avoid daytime napping. Excluding a primary sleep disorder such as sleep apnoea may be necessary.
Rest & Chronic Fatigue Syndrome
It may feel strange to look at scheduled rest periods when all you feel like is doing nothing! CFS sufferers may feel that a planned rest period is somehow “giving in” or feel that there isn’t time for “doing nothing” in a busy modern lifestyle. Everyone’s experience is different but it’s fair to say that fighting moderate to severe CFS is usually counterproductive.
Research shows that rest periods are beneficial. But how much rest? That depends on the severity of the CFS and should be individualised. We’re talking, however, about short rest periods such as 15 to 30 minutes at a time – not long periods. Rest is a time of reduced physical & mental activity, and may included relaxation exercises.
There’s positive news here – Research shows that relaxation exercises are beneficial for CFS sufferers.
What sort of relaxation exercises? Breathing Exercises, mindfulness, yoga and so-on. These exercises focus on the “here and now” and improve energy levels in the long run. It may take a week or two for the benefits to be apparent and you may not put the increased energy level down to the relaxation exercises to start with.
Pacing is often included in a CFS recovery programme. From an evidence-base point of view, The NICE guideline states that there is “there is insufficient research evidence on the benefits or harm of pacing.” However, it a common experience for both affected people and their practitioners that pacing may be very helpful to avoid a cycle of “boom and bust.”
Pacing is an ongoing process of looking at your activity levels and adjusting these against your available energy. Pacing is a day to day process and is informed by keeping a simple diary of activities. You can use pen and paper, or use an app.
For some people, pacing will mean doing less overall but for others it will be doing more overall. Pacing is a very individual process and isn’t a simple list of what to do & not to do.
There are a variety of CFS/ME apps. It is important that the app is simple to use. Look for an app allows you to track rest or activity periods and symptoms. This CFS app is available for both IOS & Android. There are five different colours are for sleep, rest, and light, medium or heavy intensity activities. The app looks easy to use and the graph allows you to make connections between CFS symptoms & activities.
Eating regularly is likely to improve symptoms. Skipping meals leads to ketosis (fat burning) and lower blood sugars – these may increase fatigue. Meals should include some slow release carbohydrate (“Low GI”).
A search for a cure for CFS has been going on for many decades. There have been false promise after false promise. Each time something is “discovered” it makes big headlines … and often ends up as a dead-end. For example, one lab found that a virus called XMRV was causing CFS. After extensive research, it was discovered that the virus had come from contamination in the laboratory.
It does seem unlikely that there is a single simple “cause” for CFS. Therefore it’s best to be sceptical of any claim for a single simple “cure.”
Graded exercise therapy is controversial. Some ME / CFS organisations are critical of the evidence behind GET and indeed are concerned that symptoms could be made worse. A detailed report in 2015 about GET & pacing produced by The UK’s leading ME / CFS organisation stated:
‘As a physical exercise-based therapy, GET may be of benefit to a sub-group who come under the ME/CFS umbrella and are able to tolerate regular and progressive increases in some form of aerobic activity, irrespective of their symptoms. However, identifying a patient who could come within that sub-group is problematic and not possible at present.’
The highly-regarded Cochrane group concluded in the 2019 review titled ‘Exercise therapy for chronic fatigue syndrome’ concluded that ‘Exercise therapy probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies.’
Thankfully The GP is used to such controversies in medicine, and will look for a positive and collaborative approach.
Certainly Pacing is likely to be more collaborative than GET. In addition, GET generally involves a referral to a trained provider – yet there are few providers of GET. For these reasons, many GPs find that pacing is the best place to start.
Is there a CFS/ME organisations that you’d recommend?
The very nature of CFS often makes sufferers feel isolated.
It is often helpful to make contact with a support network, whether face to face or online. Emerge is Australia’s leading CFS/ME advocacy organisation.
CFS experts – or not
OK, so we’ve covered the standard stuff! Let’s add some reflection based on over 20 years experience. Oh dear, another so-called expert saying they have the answers and everyone else is wrong?! No, just that I don’t really know any more than any one else …
Many people ask about CFS and the immune system or infections. Anyone following CFS research will regularly come across “breakthroughs.” Unfortunately, a desperate search by medical researchers for evidence about the causes of CFS has come to very little.
It’s a re-occurring theme in CFS research that an announcement is made about a new biomarker, only for different researchers to be unable to reproduce the same finding.
Researchers need publicity to help fund further research. Hey, this research, and the funding for it, is a great thing … and we desperately need more of it. It’s good to hope for that breakthrough. But it’s not around the corner. CFS research is like 1000 steps forward and 995 back.
It seems unlikely that there’s ever going to be a single cause of CFS. CFS is at the very least a type of severe fatigue, and fatigue is a neurological symptom. Ultimately, the symptom reflects neural activity in the “fatigue centres” of the brain – although it’s still controversial where these are located. What’s more, there is a massively complex interplay of neural pathways in the central nervous system that will challenge researchers for hundreds of years.
“We don’t know” isn’t a sexy message. But at least it’s honest.
Unfortunately, though, the vacuum of knowledge about CFS is filled with tonnes of information from so-called “experts” that purport to know the answers.
In the meantime, take what you read about CFS with a pinch of salt! The same goes for a google search of the future of house prices, the best place to put your super, the best value car, or the best time to go fishing! CFS is no less controversial simply because the science doesn’t yet have the answers.
What’s more, we life in an anti-factual age – think anti-vaccination, some views on climate change, Donald Trump election campaign etc.
It’s bad enough when the facts are there for all to see. Some people believe that no man has ever walked on the moon!. Yet when science does have the answers, there are still strongly held opposite views. The problem is that the immune-science of CFS is not reliable. This is compounded by science itself being pretty obscure. It can even be boring when you get down to the nitty-gritty end of things like statistics.
No wonder that everyone “in CFS” (whether a sufferer, researcher, doctor, practitioner) seems to have a different “take” on it.
Alongside all of the misinformation about CFS, we all hold core beliefs about all manner of things. Core beliefs may not be influenced by facts or expert opinion. They may be helpful or unhelpful. That’s not the same as saying that the illness is caused by these beliefs. However, they may not be helping in the recovery. We all have a tendency to research things (on the internet) that confirm our beliefs rather than the other way round. It is ultimately up to the person with CFS to accept whether their beliefs are accurate or helpful.
Sometimes doctors. including sub-specialists, arrange a vast list of pathology tests – including for numerous infections. This is fine as long as you know that the test will only show if you’ve had the infection in the past, and not whether that is the cause of your symptoms. It’s OK to get tests done as long as you know that they probably won’t really change things. Leading medical guidelines advise caution against over-testing. It can be frustrating to see a specialist privately on two occasions only to be told that you’ve had glandular fever or CMV at some stage in the past (most people have).
Seeing alternative health practitioners (AHPs) may well be helpful. AHPs often have considerable experience in CFS. They may be very empathetic and supportive. However, be aware of the costs of any treatment and/or any tests.
Some AHPs may also recommend a battery of tests that are outside of medical guidelines. You may be asked to “get these tests done by your GP. “ However, medicare only fund tests that are “clinically indicated.” What’s more, medicare do randomly audit doctor’s requests. For this reason, the GP will only be able to request conventional tests through medicare – which is often a small proportion of the tests recommended by the AHP.
On a positive note, it’s surprising how often people overlook factors in their lives that may contribute to fatigue: stress, sleep problems, overwork, over or under exercise, and caffeine.
If only treating CFS were easy! Well, if that’s how the doctor feels, how does the CFS / ME sufferer feel?
Who should I see about my CFS?
Please note that the medical centre does not offer a specific CFS programme. Your regular GP is the place to start. The GP will probably suggest some blood tests. When you are unhappy with your usual GP then you will probably want to see a different GP in the same practice where the records are kept.
You should always see your usual doctor for any centrelink or insurance reports.
Therapists that are often helpful include clinical psychologists, physiotherapists, & occupational therapists.