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Comorbidity of POTS & CFS in Australian Cohort (2013)

Discussion in 'Latest ME/CFS Research' started by Simon, Nov 12, 2013.

  1. Simon

    Simon

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    Comorbidity of postural orthostatic tachycardia syndrome (POTS) and chronic fatigue syndrome (CFS) in an Australian cohort.

    The most interesting thing about this, from my perspective, is that it confirms the finding from Julia Newton's team late last year that a significant but quite small proportion of CFS patients have POTS: 11% in this new study (n=306) vs 13% in the Lewis/Newton paper (n=179).

    Newton's team used Fukuda to diagnose CFS, not sure about this one, which might of course affect the findings.
    Authors Reynolds GK, Lewis DP, Richardson AM, Lidbury BA.

    J Intern Med. 2013 Nov 9. doi: 10.1111/joim.12161. [Epub ahead of print]


    Affiliation Department of Genome Biology, The John Curtin School of Medical Research, The Australian National University, Canberra.

    Abstract
    OBJECTIVE: ... The aim of this study was to examine the relationship between demographic characteristics, autonomic functioning and fatigue levels amongst CFS patients with and without comorbid POTS.

    DESIGN AND SETTING: All patients presenting to Melbourne CFS Discovery Clinic between 2009 and 2012 completed a 20-min standing task as part of their initial assessment. Heart rate and pulse pressure were recorded at baseline, at 2 min intervals post-standing, at the end of the task and following a recovery period. Average heart rate and pulse pressure variability were calculated from this data. Age, gender, length of illness and self-reported fatigue scores were also recorded. POTS patients were diagnosed by an orthostatic increase in heart rate greater than 30 beats/min, concomitant symptoms of orthostatic intolerance and no orthostatic hypotension. Differences in autonomic functioning between POTS and CFS patients were compared using independent-samples t-tests, while logistic and linear regressions were performed to examine the contribution of autonomic functioning to task completion and perceived fatigue, respectively.

    RESULTS: Comorbidity of CFS and POTS (CFS-POTS) was observed in 11% (33/306) of patients. CFS-POTS patients were significantly younger (P < 0.001), had a shorter length of illness (P = 0.034), experienced greater task difficulty (P = 0.002) and were able to stand for significantly shorter periods compared to the CFS-only patients (P < 0.001). CFS-POTS patients experienced significantly lower baseline diastolic blood pressure (P = 0.002), and significantly higher heart rate and lower pulse pressures at each standing measurement. Early heart rate changes (P = 0.002) and overall heart rate change (P < 0.001) were significant predictors of completion status, whereas heart rate variability (P < 0.001) and female gender (P <0.001) were significant predictors of increased perceived task difficulty.

    CONCLUSIONS: Haemodynamic and demographic differences between CFS-POTS and CFS-only patients suggest that the former group reflects a distinct subgroup of the CFS population. The findings highlight the utility of screening younger patients with fatigue for POTS, and identified heart rate variability as an important marker of fatigue for CFS patients in general.
     
    Last edited: Nov 12, 2013
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  2. Gijs

    Gijs Senior Member

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    The POTS patiënts have objective problems with the autonomic nervous system. It is a group who do not have CFS by it's definition.
     
    Firestormm likes this.
  3. Bob

    Bob

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    Yes, that's interesting information.
     
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  4. alex3619

    alex3619 Senior Member

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    Its hard to say what the diagnostic criteria were, and therefore have an idea on reliability of the results. It sounds, without more details, that they were just people who rocked up to a clinic. So what were the misdiagnosis rates?
     
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  5. Persimmon

    Persimmon Senior Member

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    One of the authors is Don Lewis, a Melbourne GP who runs a specialised CFS clinics. He works with Kenny De Meirleir. He is also a co-author of the ICC case definition. The abstract discloses that the patients came from his clinic.

    So, I'd expect all the patients to have a proper CFS diagnose (ie at least Fukuda).

    Would have been nice if they'd done tilt table tests instead of the do-it-yourself version of orthostatic testing, but this is the standard form of testing that I understand is done on all new patients at this clinic. The study was an analysis of data they were going to collect anyway.

    Also would have been nice if they'd disclosed rates of NMH in both the POTS and non-POTS groups, given that they collected this data as well (albeit with a quick & cheap testing technique).
     
    Last edited: Nov 12, 2013
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  6. Firestormm

    Firestormm Guest

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    @Persimmon Yes it is interesting they did not employ tilt-table testing when that is the usual practice referred to most I think, certainly by patients. I wonder why? Could it be that this method is not regarded as the best means of determining POTS?
     
  7. Firestormm

    Firestormm Guest

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    BTW what's the recommended treatment for POTS? Thanks
     
  8. Esther12

    Esther12 Senior Member

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    I think it can range from lifestyle adjustments (more salt, tilting bed to sleep, etc) to vasopresser drugs like midodrin .

    If that is to be how CFS is defined, then it's good to emphasise the importance of testing for conditions like this to help people escape the diagnosis.
     
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  9. Gijs

    Gijs Senior Member

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    The ICC case definition includes autonomic disfunction for a proper diagnose of ME. In that case only 11%-13% of the CFS patiënts have 'real' ME.
     
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  10. Firestormm

    Firestormm Guest

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    I do think that POTS should remain a separate diagnosis. If ever we are to maintain ME as a distinct condition.
     
    Legendrew likes this.
  11. lnester7

    lnester7 Seven

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    I am the poster ME child: Low NK cell activity and Numbers , Viral reactivation,White Lesions In brain, PEM and PENE......

    Yet I have dysautonomia. I think that number is deceiving, POTs is not the only kind of dysautonomia, there are So many types. I believe we do not have text book POTs but sometimes mixes and different autonomic distinctions, I say this based on anecdotal results from different patients. We are told we do not have POTs but then we get treated and get out of bed!!! Go figure!!!!

    I was bed ridden for a few months, they gave me florinef and Walked a Mile 3 days later!!! I keep out of bed thanks to midodrine and florinef.
     
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  12. Gijs

    Gijs Senior Member

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    It sounds like bloodflow problems to me. That is the key problem of this disease. Finding the cause is very complicated. I think dilation and constriction of the vessels are disfunctional as the cause.
     
  13. Bob

    Bob

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    That's an interesting distinction between CFS & ME diagnostic criteria.

    (But note that autonomic dysfunction does not require POTS as a symptom.)
     
  14. Simon

    Simon

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    I don't think that's quite right. Autonomic dysfunction covers many thing, such as reduced heart-rate variability and POTS is only one type of autonomic dysfunction, so more than 11-13% of CFS patients could have ICC ME. I'm pretty sure the ICC don't define autonomic dysfunction as just POTS, but I'm sure someone will correct me if I'm wrong.
     
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  15. Valentijn

    Valentijn Activity Level: 3

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    I think all of the research shows that Neurally Mediated Hypotension is much more common than POTS in ME patients. The CCC at least explicitly refers to NMH.
     
    ahimsa likes this.
  16. Gijs

    Gijs Senior Member

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    You're right. Bloodpressure problems can also be due to AD in ME patients. But there must be autonomic dysfunction refering ICC.
     
  17. Dolphin

    Dolphin Senior Member

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    I think this might be "our" @Simon :

    https://www.facebook.com/permalink.php?story_fbid=760049024021428&id=526359017390431
     
  18. k-AUS

    k-AUS

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    I'm a patient at CFS Discovery and would likely have had my results included in this study. I have POTS and was prescribed a beta blocker (Inderal), electrolytes, salt and increased fluid consumption but it has not stopped my deterioration. I'm 90% housebound and pacing activities around my bed. I did not do a proper tilt table test, however I'm not sure how much difference it would have made as my ANS was clearly unable to regulate itself from standing, sitting, lying down to standing again.

    Interestingly I was just diagnosed with Lyme and Chlamydia Pn (and more recently my teenage daughter was as well). The tests were done by Infectolab in Germany. Dr. L is now discovering that a subset of his patients have Lyme disease and co-infections. Perhaps those with a compromised ANS need also to look into this as a possible diagnosis - particularly if their clinical picture matches symptoms of Lyme.

    Just a thought.

    PS - can you have lyme and ME/CFS?
     
  19. GcMAF Australia

    GcMAF Australia Senior Member

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    Hi
    I beleive that some US doctor has stated that 96% of his ME/CFS patients actually have Lyme.
    The level of Lyme infections in a population is probably quite high, over 3% by some antibody studies and could be much higher than this.
    This link may help ??
    There is a lot there, but I am no expert on this

    "
    POTS study found that hyperadrenergic POTS patients hyperventilate when they stand, lowering their blood CO2 levels. This causes the blood vessels in their brains to constrict reducing blood flow to the brain. POTS patients had an immediate 30 percent reduction in cerebral blood flow upon being tilted up.

    Read more: Insights From the 24th Autonomic Nervous System Symposium #1: Autoimmunity / CO2 / Bad Reflexes and Your Next Diagnosis
    http://www.cortjohnson.org/blog/201...autoimmunity-co2-bad-reflexes-next-diagnosis/
     
  20. ukxmrv

    ukxmrv Senior Member

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    Lyme disease was an exclusion for the original CDC CFS so strictly speaking "no". If someone has Lyme disease and that explains all of their symptoms then that is their diagnosis.

    What is happening in reality is another matter. CFS patients are being found with more than one pathogen. They could have a range of different positive tests (including Lyme) and it's hard to know which of these is causing which symptoms.

    Also some CFS doctors are arguing that something has changed with Lyme disease and that the new chronic patients are different.

    We need more research until we know the full picture.
     
    MeSci likes this.

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