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Postural orthostatic tachycardia is not a useful diagnostic marker for chronic fatigue syndrome.

Discussion in 'Latest ME/CFS Research' started by hixxy, Oct 4, 2016.

  1. hixxy

    hixxy Senior Member

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    Postural orthostatic tachycardia is not a useful diagnostic marker for chronic fatigue syndrome.

    Roerink ME
    1, Lenders JW2,3, Schmits IC4, Pistorius AM5, Smit JW2, Knoop H4,6, van der Meer JW2.

    Abstract

    BACKGROUND:

    Postural orthostatic tachycardia syndrome (POTS) is considered a diagnostic marker for chronic fatigue syndrome (CFS).

    OBJECTIVES:

    The aims of this study were to (i) compare POTS prevalence in a CFS cohort with fatigued patients not meeting CFS criteria, and (ii) assess activity, impairment and response to cognitive behavioural therapy (CBT) in CFS patients with POTS (POTS-CFS) and without POTS (non-POTS-CFS).

    METHODS:

    Prospective cohort study at the Radboud University Medical Centre in the Netherlands. Between June 2013 and December 2014, 863 consecutive patients with persistent fatigue were screened. Patients underwent an active standing test, filled out questionnaires and wore an activity-sensing device for a period of 12 days.

    RESULTS:

    A total of 419 patients with CFS and 341 non-CFS fatigued patients were included in the study. POTS prevalence in adult patients with CFS was 5.7% vs. 6.9% in non-CFS adults (P = 0.54). In adolescents, prevalence rates were 18.2% and 17.4%, respectively (P = 0.93). Adult patients with POTS-CFS were younger (30 ± 12 vs. 40 ± 13 years, P = 0.001) and had a higher supine heart rate (71 ± 11 vs. 65 ± 9 beats per min, P = 0.009) compared with non-POTS-CFS patients. Severity and activity patterns did not differ between groups. In patients with CFS, criteria for Systemic Exertion Intolerance Disease (SEID) were met in 76% of adults and 67% of adolescents. In these patients with CFS fulfilling the SEID criteria, the prevalence of POTS was not different from that in the overall CFS population. POTS-CFS adolescents had less clinically significant improvement after CBT than non-POTS-CFS adolescents (58% vs. 88%, P = 0.017).

    CONCLUSION:

    In adults with CFS, the prevalence of POTS was low, was not different from the rate in non-CFS fatigued patients and was not related to disease severity or treatment outcome. In POTS-CFS adolescents, CBT was less successful than in non-POTS-CFS patients. The evaluation of POTS appears to be of limited value for the diagnosis of CFS.

    © 2016 The Association for the Publication of the Journal of Internal Medicine.

    KEYWORDS:
    chronic fatigue syndrome; orthostatic intolerance; postural orthostatic tachycardia syndrome; systemic exertion intolerance disease

    PMID: 27696568
    DOI: 10.1111/joim.12564

    https://www.ncbi.nlm.nih.gov/pubmed/27696568
     
  2. charles shepherd

    charles shepherd Senior Member

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    I must say that I am not convinced that this conclusion is correct - it is certainly not consistent with patient and clinician evidence here in the UK

    And I'm not convinced that CBT is likely to improve the underlying disease process (i.e. autonomic nervous system dysfunction in relation to changes in posture leading to vascular pooling in the lower limbs) in PoTS

    And by strange co-incidence:

    PoTS and ME/CFS - September 2016 MEA website survey

    The September MEA website survey is covering ME/CFS and PoTS (postural orthostatic tachycardia syndrome)

    More information on why are we doing this survey and the overlap betwen PoTS and ME/CFS can be found here:

    http://www.meassociation.org.uk/201...in-this-months-website-survey-3-october-2016/

    Vote via the home page on the MEA website here:

    http://www.meassociation.org.uk

    Overseas votes are very welcome in this poll

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  3. alex3619

    alex3619 Senior Member

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    I want to know their diagnostic protocols, and I want to know their definition of clinically significant improvement. How did they determine improvement? Also was a tilt table test used on every patient? Furthermore, were other OI types tested for and included?
     
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  4. halcyon

    halcyon Senior Member

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    According to who? None of the CFS criteria require it, and only CCC/SEID list autonomic dysfunction or orthostatic intolerance, nothing specifically about POTS.

    Did the IOM ever propose what should be done with these lost souls? These numbers are actually a bit better than I would have expected. Some old figures I recently came across listed CFS patients without PEM at about 40-50%.
     
  5. hixxy

    hixxy Senior Member

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  6. Gingergrrl

    Gingergrrl Senior Member

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    I am kind of in agreement (with the concept, not the article) b/c I now believe that my POTS is autoimmune vs. CFS along with just about every other symptom I have. If I had taken the "CFS" diagnosis as an explanation for everything, I would not have researched or looked any further which for me would have been a disservice.

    I have met endless people on-line with the POTS-MCAS combination who do not have CFS (but they also do not have all of the other weird autoantibodies that I have). So I have something more that remains to be determined but I think to just say that POTS = CFS would not be helpful for most patients.
     
  7. TigerLilea

    TigerLilea Senior Member

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    I've had CFS/ME for almost 26 years and I don't and have never had POTS.
     
  8. Kati

    Kati Patient in training

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    Hi @TigerLilea personally I had to get out of country to get diagnosed with POTS. The local physicians do not do more than a reclining BP and HR and another set of vitals when standing. This is definitely not the standard to diagnose POTS.
     
  9. Valentijn

    Valentijn The Diabolic Logic

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    This seems to be an abstract only. So we're already seeing the full text :p

    This is not an appropriate way to diagnose POTS, especially in a research setting.

    There is simply no bloody way that 7% of normal people have POTS. According to wikipedia, it's 0.17%.

    Also, about a quarter of the CFS patients in the study didn't fulfill SEID criteria - so no PEM for them, and they aren't ME patients.
     
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  10. hixxy

    hixxy Senior Member

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  11. Valentijn

    Valentijn The Diabolic Logic

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  12. hixxy

    hixxy Senior Member

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    Its still working for me.
     
  13. Valentijn

    Valentijn The Diabolic Logic

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    It's working now.
     
  14. Valentijn

    Valentijn The Diabolic Logic

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    Okay, the purpose of this study is to oppose the SEID criteria from the IOM, which uses OI as one of the two alternative diagnostic symptoms, in addition to the three mandatory symptoms. To do that, they are using POTS as a stand-in for all forms of OI, which is frankly, bullshit, especially since they were using the proper definition of POTS which excludes people with hypotension. But they're saying its okay, because the 3 ME OI studies they cite focused exclusively on POTS as well, which apparently means that POTS is more common than other forms, even though those studies didn't consider other forms of OI.

    Blood pressure data was taken with hypertension software, which is probably not much good for catching low blood pressure and low pulse pressure. Prior to diagnosis of CFS, 103 of 863 people were excluded because researchers couldn't get consistent blood pressure readings. This happens all the time to ME patients, again due to low blood pressure or low pulse pressure (weak pulse).

    So basically, most of the OI patients were systematically excluded. And due to a complete lack of blinding, and assessment of OI prior to diagnosis, researcher bias could have easily influenced the diagnostic process.

    The also talk about the use of meds among the CFS patients, but not the non-CFS fatigue patients.

    They seem to ignore tachycardia within the first two minutes of standing, citing to a single secondary source which is sounding pretty dodgy.

    None of the researchers have experience or training in regards to OI. There's an MD studying for her PhD who works at a fatigue clinic, a 70 year old internist who studied hypertension, a fatigue clinic research assistant, a bioinformatics specialist, a random internist, and two notorious CFS quacks.

    Has anyone seen any pre-registration for this study? The people involved really don't make sense regarding the paper which has been produced. Which makes me wonder if they intended to study something else, but decided not to publish some results.
     
    Last edited: Oct 5, 2016
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  15. Valentijn

    Valentijn The Diabolic Logic

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    I should also point out that there were no healthy controls. The controls were selected from the same pool of fatigue clinic patients, comprising all of the patients who weren't diagnosed with CFS.
     
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  16. Gijs

    Gijs Senior Member

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    They don't say that CBT improves POTS. 'POTS-CFS adolescents had less clinically significant improvement after CBT than non-POTS-CFS adolescents'. I think this POTS group must get out of the CFS basket and CBT interventions.
     
  17. Gijs

    Gijs Senior Member

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    @ Valentijn, where did you find this: ''There is simply no bloody way that 7% of normal people have POTS. According to wikipedia, it's 0.17%'?
     
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  18. Hutan

    Hutan Senior Member

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    Yes, they don't seem to know quite what they are doing. Most POTS definitions I have seen require a higher heart beat rate increase for adolescents (40 bpm) which is no doubt arbitrary, but the authors of the study should have mentioned it, rather than apply the adult standard of 30 bpm to all without comment. Of course, a higher cut off would lower rather increase the numbers of adolescents with both CFS and POTS in this study.

    And I agree with others - this study does not seem to reflect what I know about ME.

    As @Valentijn has noted, lots of people were excluded because the automated BP measurements didn't work or measurements weren't done for other reasons.

    None of that inspires confidence and it may well be that a narrow pulse pressure or some other abnormal result has caused the machine to not record a result. And if the clinicians were inexperienced, they may not have reminded people to stand still rather than wobble about using leg muscles.

    But I think there is another reason why they missed a lot of POTS.

    So, they in theory used a mean of the first three standing values measured at around 5- 8 min; 7-10 min; and 9-12 min. BUT they should have taken the maximum heart rate, not the mean.

    To illustrate, here is a set of my own HR measurements
    Supine ............64 bpm
    Standing 1 min 85 bpm
    Standing 3 min 80 bpm
    Standing 6 min 85 bpm
    Standing 9 min 95 bpm
    Standing 12 min 99 bpm
    Standing 15 min 102 bpm
    Standing 18 min 110 bpm

    So, this measurement indicates I have POTS (BP increased) as by about the 10 minute mark, my heart rate was more than 30 bpm higher than when supine. But, using the method outlined in this paper, the calculation would be (85+95+99)/3 = 93. The difference from supine to standing is 29 bpm. So no POTS.

    And, looking at my records, even done correctly, there are some measurements that aren't indicative of POTS.

    So one measurement isn't really going to give an unequivocal answer regarding a POTS diagnosis.
     
    Last edited: Oct 5, 2016
  19. Valentijn

    Valentijn The Diabolic Logic

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    It lists a study showing 170 cases of POTS per 100,000 people.
     
  20. Sidereal

    Sidereal Senior Member

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    Huge red flag.
     
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