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Clinical characteristics of a novel subgroup of chronic fatigue syndrome patients with POTS

Dolphin

Senior Member
Messages
17,567
Clinical characteristics of a novel subgroup of chronic fatigue syndrome patients with postural orthostatictachycardia syndrome.

J Intern Med. 2013 May;273(5):501-10. doi: 10.1111/joim.12022. Epub 2013 Jan 7.

Lewis I1, Pairman J, Spickett G, Newton JL.

Author information

Abstract*

OBJECTIVES:

A significant proportion of patients with chronic fatigue syndrome (CFS) also have postural orthostatic tachycardia syndrome(POTS).

We aimed to characterize these patients and differentiate them from CFS patients without POTS in terms of clinical and autonomic features.

METHODS:

A total of 179 patients with CFS (1994 Centers for Disease Control and Prevention criteria) attending one of the largest Department of Health-funded CFS clinical services were included in this study.

Outcome measures were as follows:

(i) symptom assessment tools including the fatigue impact scale, Chalder fatigue scale, Epworth sleepiness scale (ESS), orthostatic grading scale (OGS) and hospital anxiety and depression scale (HADS-A and -D, respectively),

(ii) autonomic function analysis including heart rate variability

and

(iii) haemodynamic responses including left ventricular ejection time and systolic blood pressure drop upon standing.

RESULTS:

CFS patients with POTS (13%, n = 24) were younger (29 ± 12 vs. 42 ± 13 years, P < 0.0001), less fatigued (Chalder fatigue scale, 8 ± 4 vs. 10 ± 2, P = 0.002), less depressed (HADS-D, 6 ± 4 vs. 9 ± 4, P = 0.01) and had reduced daytime hypersomnolence (ESS, 7 ± 6 vs. 10 ± 5, P = 0.02), compared with patients without POTS.

In addition, they exhibited greater orthostatic intolerance (OGS, 11 ± 5; P < 0.0001) and autonomic dysfunction.

A combined clinical assessment tool of ESS ≤9 and OGS ≥9 identifies accurately CFS patients with POTS with 100% positive and negative predictive values.

CONCLUSIONS:

The presence of POTS marks a distinct clinical group of CFS patents, with phenotypic features differentiating them from those without POTS.

A combination of validated clinical assessment tools can determine which CFS patients have POTS with a high degree of accuracy, and thus potentially identify those who require further investigation and consideration for therapy to control heart rate.

* I gave each sentence its own paragraph
 

Dolphin

Senior Member
Messages
17,567
Not sure I've any major observations on this. Here are some more minor ones

A combined clinical assessment tool of ESS ≤9 and OGS ≥9 identifies accurately CFS patients with POTS with 100% positive and negative predictive values.
This may be so, but it misses lots of people: only 9 of the 24 POTS patients have ESS ≤9 and OGS ≥9, while only 37 of the 155 non-POTS patients have ESS >9 and OGS <9.
 

Dolphin

Senior Member
Messages
17,567
"In addition, we used a number of questionnaires, and as such their accurate completion is affected by the motivation of the patient. However the questionnaires were short and have been used in numerous previous studies. In addition, in our experience, CFS patients tend to be more cooperative and willing to help in research studies than patients with other illnesses, partly due to the widespread negative impression of CFS."
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I don't understand why anybody wants to put patients into groups depending on something as vague as having one particular symptom or not.

I used to have POTS.
I don't have it now. I don't know what helped it, I do know that I was in severe and protracted PEM when I had it, it went as I rested and recovered slowly.

This disease is variable, it changes as the years go by. What bothered me at the beginning isn't what bothers me now, my disease has progressed over the 10 years I have had it.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Treatment for POTS if present, yes absolutely Esther. :thumbsup:
Fainting everywhere is very inconvieneint and likely to result in injury.
It certainly did in me.:(

I simply don't think it is useful to differentiate sufferers into subgroups on whether they have this or not.

I know I was in a very bad PEM when I had it; I know that being put on 10 mgs of amitriptyline (to help with sleep) made it a heck of a lot worse, and that worsening was exacerbated by stopping taking it. It was quite a while before I recovered from that pharmacological assault.
 

Dolphin

Senior Member
Messages
17,567
I used to have POTS.
I don't have it now. I don't know what helped it, I do know that I was in severe and protracted PEM when I had it, it went as I rested and recovered slowly.

This disease is variable, it changes as the years go by. What bothered me at the beginning isn't what bothers me now, my disease has progressed over the 10 years I have had it.
My next point (I just had my dinner) was to raise a similar point: the paper doesn't discuss this issue which I was disappointed by. Although I was never formally tested for POTS, I think I may have had it when I was younger but don't have it now. My orthostatic intolerance seems better these days than when I was younger. The POTS group were younger: mean (SD) of 29 years old (12) versus 42 (13).
 

GracieJ

Senior Member
Messages
772
Location
Utah
I am slowly coming to terms with the seeming "lowest common denominator" progression of defining new disease. It seems for large disparate groups to come to an agreement that has any chance of becoming mainstream the focus is at first very narrow, then later more inclusive. It just upsets a lot of people seeing their symptoms ignored.

Fibromyalgia, for example, had to have 11of 18 tender points among other things for diagnosis. I knew of many people whose full-spectrum symptoms indicated fibro, but because they had few or no tender points, the diagnosis was missed for years. The points are no longer included in the criteria.
 

Dolphin

Senior Member
Messages
17,567
@Graham and a few others may be interested in the info on the Chalder fatigue scale
Whereas there was a wide range of FIS scores, there appeared to be a ‘low ceiling effect’ with the Chalder fatigue scale (Fig. 2a), in which due to the low range of scores on the Chalder fatigue scale, a high proportion of subjects demonstrated maximum fatigue scores, yet demonstrating highly varied FIS scores. There was a correlation between the two fatigue measuring tools (r = 0.1; r2 = 0.03; P = 0.01); however, 62.5% (n = 105) of subjects scored the maximum score of 7 on the Chalder fatigue scale (physical), whereas the same subjects reported fatigue on the FIS in the range from 44 to 156 (Fig. 2b). Similar results were found for both total and the mental domain of the Chalder fatigue scale.

The observed ‘low ceiling effect’ with the Chalder fatigue scale in this study was consistent with previous findings [55–57]. Goudsmit et al. noted that 50% of CFS patients scored the highest possible score on this scale, whereas 77% scored the two highest possible scores. The authors noted a marked overlap between patients who rated themselves as moderately or severely ill, yet scored the highest possible score on the Chalder fatigue scale.

We demonstrated here that although there is some correlation between the Chalder fatigue scale and the FIS, there remains a marked discrepancy between what individuals report using the two scales in terms of fatigue. Subjects who reported the maximum possible Chalder fatigue score of 7 also scored a range of FIS scores from 44 to 156. Further research is needed to examine this effect of the Chalder fatigue scale. However in the meantime problems may arise in the clinical setting as those with a maximum score at baseline will not be able to record a change in fatigue during or following treatment and will therefore appear to be unresponsive to therapy.

It looked in the Table that they planned to give the percentage who scored the maximum but they didn't do it.

They said they used the 14-item version of the Chalder Fatigue Scale. However, that's rarely used and there are 8 items on the physical fatigue subscale so I presume they used the 11-item version.
 

SOC

Senior Member
Messages
7,849
Any idea what this means for us given that they used the crappy 1994 CDC definition of CFS? Doesn't this paper simply distinguish fatigued people with POTS from fatigued people without POTS without much regard for ME/CFS? That is, it might identify POTS as a factor in some forms of fatigue, but doesn't say much about ME/CFS (the CCC/ICC defined illness), does it?
 

SOC

Senior Member
Messages
7,849
Note: they use the two-minute test for POTS. I've seen longer tests e.g. 10 minutes, being used.
Standing, or TTT? Neither daughter nor I have POTS by the 2-minute standing test, and I don't think we're unusual among PWME in that. We both have clear OI of some form, though. It shows up on a TTT or longer standing tests.

This particular paper is looking rather sloppy to me. To me, the accurate conclusion to this research looks more like "Some people with fatigue have missed diagnoses of obvious POTS."
 

Dolphin

Senior Member
Messages
17,567
Standing, or TTT? Neither daughter nor I have POTS by the 2-minute standing test, and I don't think we're unusual among PWME in that. We both have clear OI of some form, though. It shows up on a TTT or longer standing tests.
2 minutes standing:

Autonomic function was assessed using HRV, baroreflex sensitivity and the baroreceptor effectiveness index (which quantifies the number of times the baroreflex is effective in driving the sinus node) [30–32]. Detailed methods have previously been described [33]. All haemodynamic measurements were performed following a 10-min period of supine rest for stabilization; during this period electrocardiography was performed and noninvasive beat-to-beat blood pressure was monitored continuously using a vascular unloading device (Task-forcee).

LVET is the time interval from the opening to the closing of the aortic valve (mechanical systole). Heart rate and blood pressure response to standing was assessed in all subjects [30]. Subjects were asked to stand in the supine position within 3 s with assistance if required. Continuous beat-to- beat heart rate and blood pressure measurements were recorded for 2 min whilst standing [3].
 

SOC

Senior Member
Messages
7,849
2 minutes standing:
Thanks. So not the TTT, which is the more standard way to test for POTS, but the crude, catch-the-worst-cases rough estimate test that is sometimes done in a GP's office. Again I say, sloppy. Sloppy patient selection, sloppy methodology, and resulting sloppy conclusions.

With that level of sloppiness, I'm not sure there's much validity to their conclusions about age, depression, level of fatigue, or daytime sleepiness.

Their points about the discrepancies between the FIS and Chalder Fatigue Scale are interesting, though.
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
I think the Chalder Fatigue scale is a car crash at either end. For healthy people there isn't enough of a range of scores to determine a "normal function", and for people with ME the scale doesn't have enough items at the severe end to show bad patches or deterioration. It's rather like having a car's speedometer only functioning between 40 and 60mph: useless for monitoring the situation in towns or on the motorway. If there isn't a reasonable range of values that healthy folk can have, then you can only use the scale to define a lack of fatigue, and not, as PACE did, to define normal function.