Newton et al: POTS Clinical Characteristics of novel subgroup CFS

Firestormm

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Clinical characteristics of a novel subgroup of chronic fatigue syndrome patients with postural orthostatic tachycardia syndrome

Accepted on-line 4 December 2012
  1. Ieuan Lewis1,
  2. Jessie Pairman2,
  3. Gavin Spickett2,
  4. Julia L Newton1,2,3*
On-line publication: http://onlinelibrary.wiley.com/doi/10.1111/joim.12022/abstract;jsessionid=A6EAB05F627485A0AE0AE4CA15E4F861.d04t04?systemMessage=Wiley Online Library will be disrupted on 15 December from 10:00-12:00 GMT (05:00-07:00 EST) for essential maintenance
Abstract

Objectives

A significant proportion of patients with chronic fatigue syndrome (CFS) also have postural orthostatic tachycardia syndrome (POTS). We aimed to characterise 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 the study.

Outcome measures were: (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.

© 2012 The Association for the Publication of the Journal of Internal Medicine
Full paper: http://onlinelibrary.wiley.com/doi/10.1111/joim.12022/pdf I don't think it's free access unfortunately, although Wiley is undergoing maintenance so that might have something to do with it I suppose...
 
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Thanks for posting this. I'll try to get hold of the full text but meanwhile here are a couple of quick comments:

  • I'm surprised that the POTS subgroup is only 13% of the total; from other work published by Julia Newton's group I'd assumed POTS was more common in CFS. However, it's not clear if the original cohort of 179 patients is representative of CFS patients generally.
  • It says that the Orthostatic Grading Scale (OGS) is an effective tool in identifying POTS from non-POTS patients, but I wondered if the OGS, or something that correlates very strongly with it, was used to define POTS (Postural Orthostatic Tachycardia syndrome) in the first place. If that's the case it would be almost a circular definition, but maybe the relationship between orthostatic issues and POTS isn't as strong as I assume.
 

Esther12

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from other work published by Julia Newton's group I'd assumed POTS was more common in CFS
I was never clear from her earlier work whether the larger percentages referred to patients who met the criteria for POTS, or included patients who had identifiable abnormalities, but not to the extent of justifying a diagnosis of POTS. This isn't something I know much about, but thought I'd share my perhaps confused thought.
 

Valentijn

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  • I'm surprised that the POTS subgroup is only 13% of the total; from other work published by Julia Newton's group I'd assumed POTS was more common in CFS. However, it's not clear if the original cohort of 179 patients is representative of CFS patients generally.
I think the 13% mark for POTS sounds similar to what was in the US study of CFS adolescents a while ago. Most patients had NMH, and a smaller group had POTS. A few had both.

But I think POTS tends to get talked about more, in proportion to its prevalence, probably because it's better known and defined, and much easier/faster/simpler to diagnose. I even see threads pop up on this forum where someone describes their OI symptoms in a way that sounds like NMH, but they call it POTS :p
 

taniaaust1

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I suspect that POTS gets more talked about as its probably more diagnosed as its easier to diagnose eg only a 10 min standing test where one may need a lot longer test for NMH.

The 13% rate really surprised me as I would of thought it would of been more. I strongly assume thou if the ME consensus definition was used instead of a CFS one, that the rate would of been far higher then that.

The findings do fit me thou.. younger age when I first got ME (so may of got the POTS first when I was in my 20s). I suffer less tiredness then most CFS people.. the POTS itself is one of my worst symptoms.

Hopefully this study will cause some to just study this subgroup apart (like all the subgroups should be being studied apart) as there are some distinct differences eg If I severely crash due to the POTS symptom, Im often recovered in a couple of hours... and the POTS stops me from getting as much post exertional symptoms (sometimes stops ME post exertional hits completely) as it prevents me from being able to exercise.
 

Firestormm

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This was posted earlier on Facebook and I hadn't seen it before:

http://www.dwp.gov.uk/publications/...onditions/postural-tachycardia-syndrome.shtml

Approved by
Professor Julia L Newton,
Professor of Ageing and Medicine and Associate Dean,
Newcastle University.
Dr Lesley Kavi
GP
Birmingham
July 2012
Treatments

  • Physiological: High fluid (and sometimes salt) intake, support tights, graded exercise programme.
  • Medical: A number of drugs are used to treat symptoms; all are unlicensed for this use. They include fludrocortisone, desmopressin, midodrine, beta blockers, ivabradine, SSRIs and SNRIs, pyridostigmine and octreotide.
  • Psychological: CBT can help patients come to terms with their illness and disability. Although antidepressants (SSRIs and SNRIs) can be used in PoTS to improve heart rate and blood pressure control, they may also be necessary for co-existing depression.
Care and Mobility

While some people with PoTS have minimal symptoms with little impact on their daily activities, others may become wheelchair users or bed-bound. Many patients can live independent lives, but some require constant supervision and assistance with many aspects of daily living. Symptoms can fluctuate significantly and people with PoTS can have good and bad days.
  • Fluid intake should be at least 2-3 litres per day. Frequent toilet breaks may be necessary.
  • Food intake should preferably be in the form of small frequent meals, low in refined carbohydrates.
  • Posture should be monitored. Prolonged standing should be avoided where possible. If patients experience problems with prolonged sitting, elevation of legs with a footstool can be helpful.
  • Fatigue is a common symptom and short frequent breaks during activities may be helpful. At times, concentration and stamina may be reduced. Periods of rest throughout the day may be required after only a modest amount of physical activity.
  • Mental clouding (‘brain fog’) can significantly impair concentration, especially when people with PoTS are upright ie standing or prolonged sitting.
  • Recurrent fainting occurs in 40% of patients and injuries can occur. Certain activities such as bathing, using stairs, etc may need to be supervised.
  • Family members may also have PoTS as some forms are inherited. Therefore affected people may also be carers for affected relatives.
Well. I did not know about the 'mental clouding' being considered a symptom of POTS. Interesting, especially the increased impairment to concentration due to prolonged sitting. Hmmm....
 

ahimsa

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I did not know about the 'mental clouding' being considered a symptom of POTS. Interesting, especially the increased impairment to concentration due to prolonged sitting. Hmmm....
Actually, I've seen this symptom mentioned for quite a while. I'm sure I remember Dr. Rowe (one of the Johns Hopkins doctors who first researched the link between ME/CFS and Orthostatic Intolerance) mentioning it back in the late 1990s. And I often joke that my IQ goes up by 30-40 points when I lie down. :)

But you are right that many folks don't know that brain fog can be a symptom of OI. Disturbed sleep is another symptom that is associated with OI that seems be overlooked.

Doctors doing research on OI do mention both of these symptoms. For example, here's an extract from http://emedicine.medscape.com/article/902155-overview#aw2aab6b3

Chronic Orthostatic Intolerance
In chronic orthostatic intolerance, patients are ill on a day-to-day basis. Chronic orthostatic intolerance may be confused with syncope because chronic illness is sometimes punctuated by acute syncopal episodes. However, this is unusual during real life (albeit common during artificial testing environments), and the author's work suggests no increase in the incidence of syncope above that in the general population. The physician should rely on the patient's history to determine whether chronic illness is present. Thus, chronic orthostatic intolerance is defined by a history of symptoms of orthostatic intolerance present on a day-to-day basis. Defining symptoms of chronic orthostatic intolerance include dizziness in all patients, with high incidence of the following conditions:
  • Altered vision (blurred, "white outs", "black outs")
  • Fatigue
  • Exercise intolerance (frequently post-exercise malaise)
  • Nausea
  • Neurocognitive deficits
  • Sleep problems
  • Heat
  • Palpitations
A large proportion of patients also experience the following symptoms:
  • Headache
  • Tremulousness
  • Difficulty breathing or swallowing
  • Sweating
  • Pallor
  • Other vasomotor symptoms
These symptoms are divisible into symptoms of sympathetic activation and symptoms of reduced cerebral blood flow.
The folks who wrote this page (Author: Julian M Stewart, MD, PhD; Chief Editor: Steven R Neish, MD, SM) use the term Chronic Orthostatic Intolerance. The different naming conventions for different types of OI always reminds me of this quote from the Research1st web page:
When you round up experts who study the autonomic nervous system (as we did at one of our research symposia in the year 2000), they have trouble agreeing on the names and definitions for the various types of OI.
See http://www.research1st.com/2011/06/19/the-outs-and-ins-of-oi/ for the full article.
 

taniaaust1

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This was posted earlier on Facebook and I hadn't seen it before:







Well. I did not know about the 'mental clouding' being considered a symptom of POTS. Interesting, especially the increased impairment to concentration due to prolonged sitting. Hmmm....
POTS has a ton of different symptoms.. so POTs patients can be easily confused with ME patients and often ME patients who have both ME and POTS often arent aware that a large group of their symptoms may in fact be being caused or made worst by POTS. There are certain things thou which can help a person to try to work out the likihood that they also do have POTS.

A large POTS symptom list is at http://www.dinet.org/symptoms.htm
....

Ive been thinking more about this study and what seems to be a low rate of POTS to me and have started wondering how good their POTS testing was. I know some places dont do testing as well as others. eg I once went to an autonomic specialist who did a poors mans test on me.. what she didnt tell me was that water should be restricted leading up to the test. I drank 3 litres of water to make sure I got there okay (drink that in about 2 hrs) and did the test and had my POTS then not show up, due to all the water. I shouldnt have been tested with all that water in me but I just hadnt been told and obviously she wasnt aware of how to do good POTS testing.
 

Valentijn

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Ive been thinking more about this study and what seems to be a low rate of POTS to me and have started wondering how good their POTS testing was.
Newton is regarded as something of a world-wide expert in POTS, especially in relation to ME. I think the research thus far just shows that NMH is far more common than POTS in ME, though a significant percentage do have POTS.
 

Valentijn

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Neurally Mediated Hypotension. Instead of heart rate climbing abruptly to a high level when standing up (as happens in POTS), blood pressure drops after standing or sitting up for a while. It can be delayed by (I think) up to 45 minutes.

The basic research paper about it is at http://jama.jamanetwork.com/article.aspx?articleid=389684
You can find more stuff by searching for "neurally mediated hypotension" "chronic fatigue syndrome" at scholar.google.com
 
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I'm surprised that the POTS subgroup is only 13% of the total; from other work published by Julia Newton's group I'd assumed POTS was more common in CFS. However, it's not clear if the original cohort of 179 patients is representative of CFS patients generally.
Seems like a reasonable sample:
179 consecutive patients who had attended the Northern Regional
Department of Health-funded CFS Clinical Service (Newcastle upon Tyne, UK)
between November 2008 and June 2011 with a diagnosis of CFS according to the
1994 Centers for Disease Control and Prevention (CDC) criteria [Fukuda] were included in
the study
It's a bigger and probably better sample than an earlier study from the same group that founda 29% POTS rate in a sample of patients:
[59] subjects with CFS/ME (Fukuda Criteria6) were identified via the patient support group ‘ME North East’. Subjects had been diagnosed with CFS/ME in a specialist CFS/ME service within 2 years of assessment in the autonomic laboratory
So 13% is probably the best available estimate of POTS currently available. Though as vj says, NMH rates are probably higher.
 

Enid

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Wide pathologies - hopefully this may add to the understanding of ME in part but let's have the cause.
 

ahimsa

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Neurally Mediated Hypotension. Instead of heart rate climbing abruptly to a high level when standing up (as happens in POTS), blood pressure drops after standing or sitting up for a while. It can be delayed by (I think) up to 45 minutes.

The basic research paper about it is at http://jama.jamanetwork.com/article.aspx?articleid=389684
You can find more stuff by searching for "neurally mediated hypotension" "chronic fatigue syndrome" at scholar.google.com
Firestormm and anyone else interested in more recent data - Dr. Rowe, one of the authors of the 1995 paper that's listed by Valentijn above, did a webinar on this topic in 2010. Here are some links that might be helpful:

(video)
http://www.cfids.org/webinar/slides-090110.pdf (slides to go with video)
www.cfids.org/webinar/cfsinfo2010.pdf (general info)

PS. I was trying to just post the link to the video, not insert an embedded version (which takes up more space), but can't figure out how to do that. I guess it's okay the way it is.
 

Firestormm

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Thanks guys. I dare say there is a lot of confusion and difficulty in determining what might or might not be POTS. In my own case a labyrinthine infection that caused some continuing damage was more responsible for the 'vertigo' and 'nausea' than I think POTS might be. For me betahistine dyhyrochloride was sufficient to take that damned nausea away. And the dizziness is only now an occasional pain. I think GPs and service providers do need to be more aware of POTS and hopefully, the measure will be hammered home. I'll make a note to ensure my own service providers are fully up to speed with Julia's latest findings and with her advice. Thanks :)
 

taniaaust1

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It's a bigger and probably better sample than an earlier study from the same group that founda 29% POTS rate in a sample of patients:
So 13% is probably the best available estimate of POTS currently available. Though as vj says, NMH rates are probably higher.
So are u saying that the first study recruited patients from a CFS patient support org and the second study recruited from a CFS clinic?

If the patients for that first study were all members of a patient support org, I'd think many of them to be in a patient support group org probably many more would of been long termers of this illness or generally may be more severe (more likely to be ME cases too rather then CFS) then those often being seen possibly regularly in general CFS clinic (those who have CFS less minor rarely I'd think bother to join patient support groups). So possibly they would still find higher amounts of POTS then this study if they had recruited study participants from a patient support org. (I do think it would give different results a change from where recruitment is coming from).

I have a theory going on at the moment (which Im looking to prove either right or wrong).. Im thinking that the longer one has this illness, maybe the more likely one is to get POTS??
 
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So are u saying that the first study recruited patients from a CFS patient support org and the second study recruited from a CFS clinic?

If the patients for that first study were all members of a patient support org, I'd think many of them to be in a patient support group org probably many more would of been long termers of this illness or generally may be more severe (more likely to be ME cases too rather then CFS) then those often being seen possibly regularly in general CFS clinic (those who have CFS less minor rarely I'd think bother to join patient support groups). So possibly they would still find higher amounts of POTS then this study if they had recruited study participants from a patient support org. (I do think it would give different results a change from where recruitment is coming from).

I have a theory going on at the moment (which Im looking to prove either right or wrong).. Im thinking that the longer one has this illness, maybe the more likely one is to get POTS??
Patients in both studies had been seen and diagnosed by the sameclinical teamaccording to the same criteria, but the recruitment method was different (i.e. all members of the ME group had previously been through the clinic).

I just checked: both groups scored the same on the Fatigue Impact Scale:

New study: FIS = 98 vs previous study = 96(0-160 scale, mean score of 13 for healthy controls in first study).

Those in the new study had been ill for an average of 87 months (not given in first study). So on the available evidenceit doesn't look like these are very different types of patients.

Hope this helps.
 

Firestormm

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You guys may well have watched/listened to this already. It's a presentation from Julia given at the AFME AGM. Not sure when it was - loaded a few weeks ago anyway.

It is very very very interesting and talks not only about POTS but about her research projects and others too. Can honestly say that it's one I will be keeping, and listening to again - and I don't think I've ever said that before!


Even talks about the desire for sugar and how this might relate to low blood pressure! Buggar me been doing that for eons and put it down to sweet tooth :D

All part and parcel of what she's talking about - maybe - will await the science with baited breath.
 

taniaaust1

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Patients in both studies had been seen and diagnosed by the sameclinical teamaccording to the same criteria, but the recruitment method was different (i.e. all members of the ME group had previously been through the clinic).

I just checked: both groups scored the same on the Fatigue Impact Scale:

New study: FIS = 98 vs previous study = 96(0-160 scale, mean score of 13 for healthy controls in first study).

Those in the new study had been ill for an average of 87 months (not given in first study). So on the available evidenceit doesn't look like these are very different types of patients.

Hope this helps.
Thanks for doing that brain work and getting that info together so we could see it to see how they compare.
 
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Even talks about the desire for sugar and how this might relate to low blood pressure! Buggar me been doing that for eons and put it down to sweet tooth :D
As I'm too lazy to watch all of this, could you tell me where to find this bit? When I have relapses - which happen in an instant - I go pale, have to lie down, and have a huge craving for sugar. Think it may be due to NMH and maybe the sugar craving is a clue.