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A RENEWED focus on improving the diagnosis and management of patients with chronic fatigue has been welcomed, but an Australian expert says there is a long way to go before this complex illness is well understood.
Dr Robert Loblay, director of the Royal Prince Alfred Hospital Allergy Unit in Sydney, said the new focus in the US drew attention to the many unanswered questions regarding myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but it did not offer a significant advance on the current knowledge base.
Dr Loblay said it was disappointing, but not surprising, that little progress had been made in the area of ME/CFS since he co-convened a working group to develop CFS clinical guidelines published in 2002. (1)
His comments follow the publication in the Annals of Internal Medicine of reviews of treatment and of diagnostic methods for ME/CFS as well as a position paper. (2)
The position paper called for renewed research efforts and proposed a new case definition and a new name for the illness — systemic exertion intolerance disease.
Dr Loblay said the call for a new case definition was “misguided”.
“The purpose of having an agreed case definition is so [research] results can be compared between different studies”, he said. “What they are not really grasping is that there is no clear dividing line between people who get lesser degrees of those symptoms and those who have more severe degrees which leave them in a much more debilitated and disabled state. It’s a spectrum.”
An editorial accompanying the US reviews stated that a key message in the papers was that ME/CFS was a “real illness”. (3)
“When skeptical physicians … tell patients with ME/CFS that ‘there is nothing wrong,’ they not only commit a diagnostic error: They also compound the patients’ suffering.”
Dr Loblay said the papers highlighted continued sceptisim around this illness in the US, but said in his experience such resistance to this diagnosis was no longer common in Australia.
“Subjectively, I do think attitudes have changed. Certainly among the younger doctors, there is much more willingness to accept that people with this condition are genuinely ill. Even though we don’t understand what’s causing [their illness], these patients deserve a careful evaluation and whatever treatment modalities might seem appropriate for the individual”, he said.
Professor Donald Staines, co-director of Griffith University’s National Centre for Neuroimmunology and Emerging Diseases (NCNED), said the Annals of Internal Medicine editorial was “right on the money”.
“It alludes to the fact that some medical practitioners are cautious about the diagnosis — some are even sceptical — because no laboratory test to diagnose this illness has been developed”, he said.
However, Professor Staines, who runs a specialised ME/CFS clinic at the university, said he recognised the “extraordinary difficulty” in diagnosing this illness.
“I really empathise with GPs because there is an extraordinary range of reasonably common clinical conditions that also produce debilitating fatigue. For example, people with thyroid disease, diabetes and other autoimmune diseases”, he said.
“By the time we get to see patients [in the clinic] they have been very thoroughly investigated for other things and that’s the way it should be, because until we get a sensitive and specific test, it is a diagnosis of exclusion.”
He said an international case definition had helped define the symptom presentation of the illness. (4)
Professor Staines and colleagues recently published research identifying genetic variances in patients with ME/CFS that might hold the key to understanding the pathology of this illness. (5), (6)
He said the identification of single nucleotide polymorphisms (SNPs) both in transient receptor potential ion channels and acetylcholine receptors in patients with ME/CFS provided some clues to the biological basis of the condition.
The presence of SNPs in the genes of these two important receptors could lead to heightened sensitivity to physical and chemical threats and impaired nervous system functioning.
Professor Staines said if the nature of the receptor was changed, it could not do its job and create impairment. “That’s what we think is going on with ME/CFS.”
Investigations were continuing at NCNED, he said.
Dr Loblay said the NCNED findings were intriguing and represented a small step forward.
However, he said it was likely epigenetics also played a role in the development of ME/CFS and only through the study of difficult-to-access brain and nervous system tissue would this mechanism be fully understood.
(Photo: Squaredpixels / iStock)
Whilst highlighting the plight of ME/CFS sufferers is a necessity, there seems to be a beleif that we must look to the US (and at other times, the UK) for guidance. The work that the NCNED is doing is ground breaking and a great step forward. However, there is no reason why there cannot be a decision made to lead the way on this condition, instead of following the lead of otherrs.
Australia needs to take the lead. Fund the condition – properly. Stanford University’s multidisciplinary approach to the condition is an exmplar for what is required. The concept of a “fatigue state” that the 2002 Guidlines focused upon is of little use to the medical fraternity. It did, however, serve the needs of insurers in denying claimants access to genuine entitlements in the face of a serious illness.
With all due respect to Dr. Loblay, there is no genuine change to the attitude towards ME/CFS. GPs might recognise it, but those that do offer nothing. They know nothing. Specialists are not there to support the condition. GET and CBT are not the solution – at all. Somehow they have created the perception for some that seeing a psychologist and doing some exercise is the cure.
It most definitely is not.
There are many other associated conditions to this condition as well – but try getting them investigated or treated seriously. You are ignored or shipped off to a Psychiatrist for some counselling and changes to your beliefs about your condition. It is pointless and offensive.
Let’s get to the crux of the problem. Money and will power. Let’s fund the condition. Let’s demonstrate an intent to resolve it. Set schools of thought aside and commit to the task at hand – once and for all. Lead the field.
With all due respect to Dr. Loblay, there has been very little change in the attitude towards ME/CFS here in Australia. Anyone who has kept in touch with anyone who has the condition knows full well that down here in the treaches, the prejudices are alive and well. You cannot enter any hospital in country Austalia with the symptoms of ME/CFS. If you have respiratory symptoms,or cardiac pain, or even worse another intervening condition, you will be treated psychologicaly and shipped out.
People have died like this. I’ve seen it.
Less talk more action More realism.
Some patients with chronic fatigue symptoms have obstructive sleep apnoea, or “the upper airway resistance syndrome” which is just very mild sleep apnoea. All patients with chronic fatigue symptoms should have sleep studies early, as for some of them symptoms can resolve with adequate therapy. I consider that all patients with chronic fatigue symptoms should have sleep studies every 5 years, as the first sleep study may only show mild obstructive sleep apnoea, however, the sleep apnoea can become more evident with time. If sleep apnoea is diagnosed and treated early, then their quality of life improves and they are able to contribute more to society.
These non specific symptoms bear a great similarity to those first described by Da Costa in 1871 in US Civil War veterans. These symptoms turn up after every engagement with the latest being Gulf War Syndrome. They also are similar to post viral conditions and there is at least some evidence for a cytokine mediated mechanism. I have been having considerable success with Low Dose Naltrexone. Some 70% of pts report improving from “Life changing” down. Not a proper blinded study but very encouraging.