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PATIENTS with chronic fatigue syndrome (CFS) may still have to wait a year or more to be diagnosed, says an expert who is seeking to “embolden” GPs to make this diagnosis and provide supportive care.
Professor Andrew Lloyd, Head of the Viral Immunology Systems Program at the Kirby Institute and Director of the UNSW Fatigue Clinic, said he hoped that a narrative review that he has written with Dr Carolina Sandler, published in the MJA, would provide GPs with greater confidence to diagnose CFS.
“The review is aimed at GPs … to embolden them to make the diagnosis,” Professor Lloyd told InSight+ in an exclusive podcast.
He said international surveys had shown that most practitioners recognised CFS as a valid diagnosis but remained reluctant to make the diagnosis. It is estimated that CFS affected about one in 100 patients attending primary care.
“The average interval between onset of illness and diagnosis is generally in excess of a year. And that means that, typically, patients have been to [several] doctors, and either the doctor is too cautious to make the diagnosis or is not confident enough or, alternatively, doesn’t believe in it. But I think it’s more of the former,” Professor Lloyd said.
He said diagnostic delays reflected a need for greater awareness and education in primary care to boost the confidence and capability of GPs to make this diagnosis and provide supportive care.
“[We want] to encourage GPs not to worry about any of the minor variations in the so-called diagnostic criteria, but just to run through the process of recognising the positive characteristics, taking a history, doing an examination, doing a limited set of tests, and actively participating in diagnosing the illness and then, secondarily, thinking about how we manage it.”
Professor Lloyd said the three cardinal symptoms of CFS were fatigue and pain, unrefreshing sleep, and concentration and memory impairment.
He said relatively limited amounts of physical activity – anything from gardening to a gym session – could result in hours or even days of debilitating fatigue.
“In a clinical sense, it is readily possible to become highly suspicious of this diagnosis if that characteristic triad is present and you can’t find any other explanation. So positive recognition of the cardinal symptoms and then, secondarily, the careful exclusion,” he said.
The MJA authors noted, however, that CFS was a condition with “imprecise diagnostic boundaries”, pointing to several overlapping conditions. These included fibromyalgia, irritable bowel syndrome and postural orthostatic tachycardia syndrome.
Dr Sarah Knight, Senior Research Officer at the Murdoch Children’s Research Institute (MCRI), said issues relating to diagnostic criteria, as well as limited evidence to guide management and treatment, made supporting patients with CFS and their families challenging.
“This is even more evident in children and adolescents with CFS, where much less research has been dedicated,” she said. “However, as both young people and adults continue to be diagnosed with CFS and there is clear evidence of significant variations in the care received across Australia, it is critical that there is a concerted effort to improving diagnosis and supportive care through consensus guidelines and education.”
Dr Knight said, like in adults, estimates of prevalence for CFS in children and adolescents varied widely, from 0% to 2.91%.
“Our recent national survey suggested that CFS is rarely diagnosed in Australian children under 10 years old,” she said. “While CFS appears more common in adolescents than in younger children, we found marked variability in diagnostic rates in adolescents between Australian states. We believe this may be due to variation in service accessibility and clinician understanding of CFS.”
Professor Lloyd told InSight+ that although a cure for CFS remained elusive, there was a good evidence base for supportive care.
Such care included physical and pharmacological approaches for pain relief, management of clinically significant mood or sleep disturbances, and appropriate counselling regarding the chronic illness.
Advice regarding pacing of activities to manage functional status was also appropriate, the MJA authors wrote, as was advice to avoid excessive rest.
Dr Knight, who is also a senior clinical neuropsychologist at Monash Children’s Hospital, said a commitment to large-scale, multidisciplinary, collaborative studies was needed to continue to advance the understanding of CFS.
“We are looking at brain metabolites and brain microstructural properties. We want to see whether these biomarkers relate to presence of and/or severity of particular CFS symptoms, including fatigue and cognitive functioning,” she said.
Research efforts were given a boost in 2019 after the National Health and Medical Research Council announced a $3 million targeted research program to develop a better understanding of the causes and mechanisms of CFS.
Hi There, Ms Black and Dr’s Fenelon and Gudisek Im still waiting for someone (anyone) to let me know what biological markers I should order for the next patient who presents with fatigue, often associated with widespread non dermatomal pain, demonstrates catastrophic thinking, passive character traits and scores in the depressed and anxious ranges on validated psychometric tools? Could you provide them together with a link to some decent peer reviewed journals and if you wouldn’t mind a cohesive biological theory? You have alluded multiple times to their existence why cant you publish them?
Dr Fenelon just for your information you stated “your feeling is that CBT makes anxiety worse”. Heres a cochrane report https://www.cochrane.org/CD001848/DEPRESSN_psychological-therapies-for-people-with-generalised-anxiety-disorder
Oh and here https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003388.pub4/abstract
Your assertions that SSRI’s are addictive would not be readily accepted by most of our profession.
Ms Black what are the biochemical markers, you claim are widely accepted? Could you provide a link?
Not a single answer to my queries has produced such a test. Indeed others at least have the grace to admit that they do not exist.
Your analogy to MS is very poor. MS has a series of well understood, reproducible physical signs (spasticity, abnormal reflex’s, bladder dystonia, limb weakness in myotomal pattens etc). Hard radiological signs. Reproducible and proven biological treatment agents that produce symptoms relief and or reverse pathological / radiological markers.
Other appeals to authorities “many doctors accept it”
Or personal experience “I had it”
Are not evidence for its existence as a biological / physical ailment. Indeed I would draw the analogy to Lyme Disease of Australian origin, or those who claim sensitivities to wifi or believe that acupuncture cures their …..,, (fill in the blank). These have doctors who believe they exist and are physical. Individuals are firmly convinced in their existence.
Because Saul Geffen,you are incorrect, ME/CFS has wide range of symptoms as it is a multi systemic disease, and the last few years in particular has shown the world in the many published articles, that are consistently and continually identifying clear biomarkers that could be used for diagnostic purposes in the future, across many different research focus studies and systems. I find it quite hard to believe you have not heard of any of these publications when you specialize in this field?? I don’t understand how and why you are not aware of the latest Research? CBT and exercise treat it?? That is ambiguous statement …. you can treat anyone one with anything, doesn’t mean that it will make them better. It depends on how you are using those therapies to help manage the condition as to whether it assists patients or not. And no, it does not exactly match the criteria for somatoform disorder at all. You are completely blindsided to your own opinion and are only seeing what you want to see….open your eyes sir!!!! The science has now discovered what it once not knew….. so you have professional dignity intact….. but you will not for much longer if you continue to ignore and refuse to read/ hear/ see/ view the evidence piling up around the world ….. it will only be a matter of time before official clinical testing diagnostic practices are available that you seem so keenly focused on. And in the mean time, the diagnostic assessment tool in , in the ME international consensus criteria for medical practitioners, is quite comprehensive diagnostic tool.
Have you looked at how it is currently diagnosed through that, to see ???? Perhaps worth a look since it’s an area of interest for you.
Saul Geffen, just because ME/CFS does not yet have ‘ an accepted, researched and validated pathology test to diagnose’ it does not mean that the condition merits a psychiatric diagnosis. This misdiagnosis has also happened with a number of other conditions, such as MS which only came to be accepted as physical when an appropriate diagnostic technique was discovered for it. While the diagnosis changed, the condition didn’t, showing it was the attitude of the medical profession that needed changing. ME/CFS still awaits the discovery of a widely accepted repeatable test. Meanwhile, patients lose most of their livelihoods and activities. Some are housebound and bedridden due to the energy deficits. Attributing this dire condition to psychology is an unfounded preferred belief.
Would you read the criteria based on research and the experience of many doctors with intensive experience with this disease? https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
You will see in these criteria that the symptoms of this condition are not the criteria for the psychiatric conditions you mention, even if some patients may have psychiatric or other comorbidities. Where patients and doctors reject a psychiatric diagnosis it is not because they don’t think psychiatric conditions are serious. It is because it is the wrong diagnosis which can lead to damaging treatment and patient invalidation.
As for your claim that ‘in societies without an affluence, and social safety net the condition is virtually nonexistent’, this is another unfounded conclusion. The condition may appear to be nonexistent because it is not diagnosed. Simply, patients may not be able to afford a doctor who could diagnose it, or could not find one who had the knowledge. This has happened also in Western societies with sophisticated health systems eg the US, where for some time only people with sufficient incomes who could get to an expert doctor were diagnosed and it was thought to be their sole domain. Even now in sophisticated health systems patients go undiagnosed or misdiagnosed for years due to lack of medical knowledge.
At least one of us knows what this dis-ease is about. As I said, I don’t understand it and I’m just happy I haven’t suffered the more severe ME version of it. My apology for the term arrogance. Convicted is what I meant.
People used to think pepper had spikes on it and that’s why it stung the tongue. Then the microscope was invented. Yes there is always bias. It has to be measured against available knowledge and the capacity of observer error, both personally and in research to remove it.
One thing for sure, it is easy to prove someone has a psychological problem. Insurance companies manage to prove a psychological basis for almost everything. It’s also very hard to disprove it.
Prof Fisher your articles in open access journals in no way prove your contention that CFS is biomedical rather than psychiatric. Indeed I would point out that there are many, more obvious, well researched and published in far higher quality journals pointing out immune dysfunction in psychiatrically unwell individuals such as here https://www.nature.com/articles/nature07455.
Indeed your article where you compared immune function in a small subset of immune cells after first processing them (freezing) and comparing them to “normal controls” does not prove your contention. Why didn’t you compare them to those with a FND or significant anxiety and depression? Perhaps those same observed minor and not generally accepted abnormal markers would also exist.
Dr Fenlon I would suggest two things. Calling people who don’t share your opinion “arrogant” does not advance your case. Second perhaps you would concede that since you have convinced yourself you are / or have been afflicted by the CFS condition you are not unbiased in the assessment of it as either a principally biological or psychological / personality affliction.
Could any of my critics please give me an accepted, researched and validated pathology test to diagnose this condition? Could they also point out how it differs in any way from the diagnostic criteria for a somatoform disorder? Perhaps they could comment on why in societies without an affluence, and social safety net the condition is virtually nonexistent?
While its etiology is unclear, with various and varied initiators, the evidence is clear that ME/CFS (ie including post exertional malaise as a cardinal feature) is biomedical in nature with biomarkers in blood serum, urine, faecal microbiomes, blood lymphocytes and in immortalized, cultured blood cells. Multiple research groups including my own have contributed to this evidence. See https://www.mdpi.com/2075-4418/9/3/80 for a review as well as https://www.mdpi.com/1422-0067/21/3/1074 and https://www.mdpi.com/1422-0067/21/3/1142.
Saul Geffen, I’ll give my opinion. As I said, focussing on the illness and looking for answers and cures makes it worse. Learning to identify what is not the illness is the only thing that helps.
I would argue CBT makes it worse (my feeling about CBT for anxiety and PTSR as well). Committing patients to your timeline for appointments and adding new requirements into their fatigue and brain fog borders on cruel for some people. Patients report taking hours to days recovering from simple medical appointments.
SSRIs and SNRIs are addictive medication classes that add withdrawal and dependence/tolerance symptoms into the mix, with (maybe) a small benefit in pain management. Adding the need to ramp doses up to gain ongoing benefit or to avoid balance impairment, tinnitus, brain static and distress is hardly a benefit. Withdrawing these medications for those reasons can take months and the symptoms can go on for years in some people.
TCAs may improve day/night orientation and pain in some people, but not consistently. Maybe low dose naltrexone has a place. Eating well and finding a routine when possible helps.
There seems to be an arrogance in your confidence about the psychological basis of CFS/fibromyalgia. The pain component has been shown in animal models to be an adverse neural feedback loop, with increased inflammatory markers (Substance P, TNF) at the the spinal nerve level increasing afferent transmission of peripheral information that switches neurons and adjacent glial cells on, leading to a need to seek more information via increased receptor sensitivity peripherally. The immunological (chronic or recurrent illness) and central nervous system components (fatigue and brain fog) seem to be part of similar adverse loops that focus on what’s wrong and actually create the problem by doing so. I don’t doubt people get down about all this, but it’s a physical illness.
Does this help?
Thank you Dr Lidbury. To those who call me and others ignorant, who claim a psychiatric or psychology based diagnosis is demeaning or devastating obviously do not treat patients with FND. Nor do they understand that psychiatric conditions are very real, very debilitating and worthy of treatment. That you or your patients are reluctant to accept that your brain and psychological makeup are intimately related to your feelings of fatigue, malaise and physical functioning demonstrates either a lack of reading or inability to comprehend just how debilitating psychiatric disorders are. I for one would rather have a limb amputation than schizophrenia.
Again could any of the doctors who claim to have the syndrome or treat patients with it or similar conditions (ME/ Australian Lyme disease etc) clarify how the symptoms differ from a somatoform disorder and outline to me pathology markers?
Further could they outline how a comprehensive treatment of the condition (CBT / acceptance therapy gentle progressive physical activity/ activity modification / SSRI /SNRI ) are in any way different to the accepted and validated treatments for a FND?
To Saul Geffen – yes, that’s my understanding.
A problem for ME/CFS diagnosis is the lack of lab markers, including the range of diagnostic pathology tests that generally return as within the reference intervals, even for patients with severe symptoms (hence the “rethinking …” suggested by the publication title).
There are a number of potential serum cytokine markers, but none have been successfully validated. Thanks.
There are many things we don’t understand. I don’t understand CFS, but I was diagnosed with it about 15 years ago. An odd rash appeared, but I felt well for 4 days. Then on a mountain bike ride I became tachycardic and short of breath quite suddenly. My pulse would settle to 120, but go back up to 180 just walking 200m uphill to find the group of riders I was with. I had to stop a few times. I thought I was hyperventilating. By the time I made it back down the hill to my car 15-20 minutes later, my wrists, hands, ankles and knees were significantly effused and my jaw hurt with movement. I was febrile. I had been stung multiple times over previous the previous 2 weeks by mosquitos.
Over the next 3 years I was never free of low grade fever and joint swelling. I could cope with that, but not the total incapacity that came with it. I missed quite a bit of work, especially in the first year, but when I tried to address my income insurance claim I found I had no memory of when. Times when I thought I was at work, I was home sick and times when I thought I was sick I had been consulting patients. I had no memory of that even after reading my notes, although they were logical records of my work and all my patients seemed happy with my care (when I was available).
For more than 10 years I would get sick often. Instead of shaking off viruses in a couple of days I would go down badly and not be able to work, eat or function.
I tried to keep active, but I was terribly tired and never felt I slept well. I fell asleep at work like I had narcolepsy. I was scared of it driving. I drank lots of coffee. I didn’t trust my memory and started taking more extensive notes at work. I seemed to lose my previously excellent memory. I have never regained it.
I tried all sorts of supplements and physical treatments for my body pain which became generalised after the first 9 months or so and worse if I didn’t move. Nothing really made much difference. I did try medium to stronger analgesics, but they just made me fuzzier and I saw the risks. They have no place. Over time I was able to gain confidence that physical activity led to an energy boost and changed my pain to one that made sense, muscle pain – DOMS. I have been injured a number of times since this started. I noticed injuries made me feel better. My body pain would reduce. My guess is that my nervous system finds something genuine to concentrate on and stops worrying about the negative feedback loop that runs all the time. It’s not possible to understand why a simple tap on my leg can make me shudder with pain, but broken bones are manageable.
I still don’t sleep well. Pain prevents it. It’s very strange – if I don’t move because I fall deeply asleep, the pain wakes me. I don’t handle long flights because if I don’t get to move I hurt to the point of feeling distressed. Some nights just resting my legs together is unbearable. It makes no sense, years after this started, being a logical and educated doctor. Knocking myself out with sedatives is not a place I can afford to go.
The fatigue continues, but it is nowhere near as bad. Thank goodness. I work well now, but I have an early to bed and early to rise routine. I exercise often. I was always very physically active and pushing hard is normal, but I have had to adapt to how I feel and respect my capacity. Competitive sport and deadlines is not something I would look for.
I was diagnosed by a specialist with excellent clinical skills about 10 or so months in. He made the difference to my recovery, if that’s what it is. He told me diagnosis was “obvious”.
“You have fibromyalgic chronic fatigue syndrome”.
“Bullshit, I don’t want to hear that!”
“Well you do and until you accept it you will not get better. You have to avoid getting sick, avoid getting stressed and exercise, not too much and not too little.”
“So I need to find another job????” (Another life?)
He told me I needed to work out how to do it. I went home shell-shocked. I felt like my life flowed away with that diagnosis. And then I got it. Only I could manage this and it does depend on being able to put it in place. It is real. It has no answers other than time and what comes from within – resilience without expectation. Patience.
So, to those who think this is not a real condition, or is something made up, somatiform, annoying, or a mystery waiting to be unravelled, I suggest you consider how you might feel if all that could make a difference was what your clinician suggests. It needs someone to help you understand that the negative neuro-immunological feedback loop feeds on expectation. Dismissal, offers of cures and remedies and providing a status for this illness makes it worse. It makes the patient look for more answers where there are none.
It is hard for doctors to accept we are not able to offer cure or even understand, but we can help.
The actual answer patents are looking for what is NOT chronic fatigue syndrome and learning to find it again.
This article concentrates on the vague symptom ‘fatigue’ aspect of ME/CFS. Yet, the recognized hallmark of this condition is post-exertional malaise (PEM) which includes the exacerbation of numerous symptoms including those which do not normally follow exercise, eg flu-like symptoms, brain fog, not merely fatigue. PEM prohibits increase in activity and so it makes little sense to suggest that patients rest too much. It is all they can safely do.
In recognition of this symptom the criteria proposed by the then Institute of Medicine (now National Academy of Medicine (NAM) has named the condition Systemic Exercise Intolerance Disease. Why has this reference been omitted from this article? Other criteria with more comprehensive descriptions, The Clinical Case Definition and Guidelines for Medical Practitioners for ME/CFS and Myalgic Encephalomyelitist: Internation Consensus Criteria have also been omitted. Why? All of these would help doctors to diagnose ME/CFS. The fatigue-lite description here distorts the condition and omits mention of the severe manifestations of this disease. References to the findings of the many physical abnormalities also go unacknowledged.
As NAM acknowledges, ME/CFS as a ‘complex, multisystem, and often devastating disorder’ which is ‘not psychiatric or psychological’. A psychiatric diagnosis, as suggested in some comments can be disastrous for the patient: it invalidates the patient and can lead to potentially harmful treatments such as Graded Exercise.
The ignorance of those that claim that we are referring to a FND. Is incredibly disturbing.
There is significant evidence of biological abnormalities in this disease which we are learning more and more about from some top researchers here and oversea everyday, despite it being severely underfunded.
The author leaves out post exertional neuro immune exhaustion (the worsening of symptoms even with trivial exercise – it does not need to be a trip to the gym or gardening, for some it can be walking to the mailbox or even getting up to go to the toilet) as the core feature of this illness.
Some patients are housebound or bedbound for years or decades on end with little to no help, no real treatment, often without any symptom relief due to the ignorance of some doctors, while other patients avoid the health care system (even for other illnesses) altogether due to maltreatment.
We need a serious attitude shift regarding this illness. We can no longer put up with the way patients have been treated for the last 30 years.
Dr Brett Lidbury claims that we simply have to redefine the reference ranges! Dr Lidbury does that mean you accept that there are no consistent and accepted laboratory tests to diagnose CFS?
Dr Haane and Anonymous could you point out the universally accepted and distinctive biological markers for CFS? Could you also point out where I say they “just” need psychiatric care? I’m a rehabilitation physician routinely treating functional neurological disorders, I simply don’t pretend they have a mysterious and nebulous underlying infective or autoimmune basis. Again could anyone point out where a patient with CFS does not meet the criteria for having a somatoform disorder?
I was diagnosed with CFS & fibromyalgia by Prof John Dwyer after being dissed by GPs Adult onset glandular fever in 1998. On medication now, Repatha, which may or may not exacerbate CFS. Been all good till recently and immunologist at a leading Sydney have stated they do not beIieve in CFS and therefore no point in making an appointment to investigate. It is real, it is psychologically debilitating.
There are biological markers in CFS, it’s not so simple as a functional neurological disorder or somatoform disorder. That’s not to say there cannot be a component of that in individual presentations, but given we know there are biological abnormalities we cannot label people with CFS as *just* needing psychiatric care. That would be doing our pts a gross disservice. Having said that, as a Psychiatrist I’d recommend consideration be given to a referral on the grounds that chronic pain and disabling fatigue place people at high risk of mental health problems, and that any mood or anxiety symptoms will be likely to worsen functional capacities and may increase pain and fatigue.
Recent Australian research (myself and collaborators) have looked to re-examine routine pathology results via machine learning strategies, and redefine these markers beyond traditional laboratory reference intervals. The ultimate aim being to provide a new rubric for GPs and other front-line clinicians who suspect a ME/CFS diagnosis (“Rethinking ME/CFS Diagnostic Reference Intervals via Machine Learning, and the Utility of Activin B for Defining Symptom Severity” – https://www.mdpi.com/2075-4418/9/3/79).
This paper appears with a number of others concerning “Biomedical Insights ….” that may assist biomarker development, and therefore, a laboratory diagnosis. The metabolomic results reported, supported by other research observations, show that ME/CFS is not an imagined disease, but a condition underpinned by physiology, biochemistry and molecular genetics.
Any GP worth his or her salt should be able to diagnose and manage CFS. But, time consuming, so sent to specialists whose earning power/ hour is 5-6 times that of a GP.
You obviously have personally not experienced CFS! It is not a Somatoform disorder.
I’d rather GPs upgrade their skills at diagnosing and managing real illnesses.
Having had CFS in the late 1960’s after a bad bout of measles, during a time when it was not at all recognised, one went through a torment of self blame and shame at being so helpless . That mind set in itself causes distortion of thinking for many years
So you have a disease state marked by imprecise, variable and overlapping symptoms. Absolutely no consistent or well recognized pathological or radiology markers. A syndrome that is treated by CBT and exercise. A syndrome that exactly matches the DSM-4 criteria for a somatoform disorder, yet clinicians refuse to accept that its a psychiatric syndrome and expensively head off to find non existent markers.
Why not simply tell patients the truth, that they have functional neurological disorder?