Accurate diagnosis of ME & CFS based upon objective test methods for characteristic symptoms

[Bob]

This came to my attention via Frank Twisk on Twitter: https://twitter.com/FrankTwisk/status/613278386610405376
Open Access.

Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms
Frank NM Twisk.
World J Methodol. 2015 June 26; 5: 68-87.
Published online 2015 June 26.
doi: 10.5662/wjm.v5.i2.68.
http://www.wjgnet.com/2222-0682/full/v5/i2/68.htm

Abstract
Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent to CFS, let alone a severe variant of incapacitating chronic fatigue. Distinctive features of ME are: muscle weakness and easy muscle fatigability, cognitive impairment, circulatory deficits, a marked variability of the symptoms in presence and severity, but above all, post-exertional “malaise”: a (delayed) prolonged aggravation of symptoms after a minor exertion. In contrast, CFS is primarily defined by (unexplained) chronic fatigue, which should be accompanied by four out of a list of 8 symptoms, e.g., headaches. Due to the subjective nature of several symptoms of ME and CFS, researchers and clinicians have questioned the physiological origin of these symptoms and qualified ME and CFS as functional somatic syndromes. However, various characteristic symptoms,e.g., post-exertional “malaise” and muscle weakness, can be assessed objectively using well-accepted methods, e.g., cardiopulmonary exercise tests and cognitive tests. The objective measures acquired by these methods should be used to accurately diagnose patients, to evaluate the severity and impact of the illness objectively and to assess the positive and negative effects of proposed therapies impartially.

 

[Sasha]

Interesting but the recommendation of CPET for diagnosis is worrying - it seems that people don't always recover from it. You shouldn't have to make your illness worse in order to get a diagnosis.

Or is there a version of it that's safe?

 

[alex3619]

I have said similar things with respect to the SEID definition. All the major characteristics of ME are testable to a greater or lesser extent. We do need to move to objective methods.

One thing that we really need is a standard battery of tests for measuring improvement of functioning. This topic has come up a number of times over the years. This paper might be a step toward that.

I now consider three tests are useful for defining pathophysiology that are well understood and very very old in scientific terms. They date to 1940, 1946, and 1949, for TTT, qEEG and CPET respectively.

I am now considering whether the opthalmoscope (1852) should be added to that list. The research this is based on is not published yet.

If you add in actometers and sleep studies then you have all the major symptoms covered. CFS and ME might not be objectively diagnosable, but the key symptoms are objectively measurable.

 

[alex3619]

Interesting but the recommendation of CPET for diagnosis is worrying - it seems that people don't always recover from it. You shouldn't have to make your illness worse in order to get a diagnosis.

Or is there a version of it that's safe?

I do not think there is a version that is safe. I think that this is, currently, a research tool, not always applicable clinically. However for some patients the rewards might outweigh the risks. What I would not like to see is that this test becomes mandatory. We do need better, safer, methods. For now its all we have however.

 

[Valentijn]

Interesting but the recommendation of CPET for diagnosis is worrying - it seems that people don't always recover from it. You shouldn't have to make your illness worse in order to get a diagnosis.

If the alternative is GET, then I think the CPET is warranted. I know which one I would prefer

Of course it would be even better if certain doctors stopped being lazy turds, educated themselves sufficiently about the disease, and didn't disbelieve their patients by default. But since that isn't happening any time soon, the CPET is a decent alternative to a more prolonged period of medical abuse and neglect.

 

[Sasha]

If the alternative is GET, then I think the CPET is warranted. I know which one I would prefer

Of course it would be even better if certain doctors stopped being lazy turds, educated themselves sufficiently about the disease, and didn't disbelieve their patients by default. But since that isn't happening any time soon, the CPET is a decent alternative to a more prolonged period of medical abuse and neglect.

But I think there are plenty of reasonable doctors who will believe that symptoms are what patients tell them - but the suggestion seems to me to be that this becomes part of a standard battery of diagnostic tests to distinguish ME from other diseases with overlapping or similar symptoms.

 

[Nielk]

Frank Twisk is making the case that ME and CFS, although somewhat overlapping, are two distinct entities.

 

[alex3619]

and didn't disbelieve their patients by default.

Doctors don't just serve their patients, they serve their profession and the demands of the authorities over them ... which means government and its associated organizations, or medical management companies, or insurance companies. They are the first gatekeepers on medical related costs.

Best practice medicine, and most cost effective medicine, are not the same thing. These two goals are in conflict. Currently the default medical position seems to tend toward disbelieving patients.

We need to get away from subjective assessments, which means biomarker research is very important.