PoTS and ME/CFS - MEA website survey

[charles shepherd]

Current figures after just over 24 hours:

• 
  Do you have a diagnosis of PoTS (postural orthostatic tachycardia syndrome) in addition to ME/CFS?
  
  • YES - definitely (38%, 29 Votes)
    
    
  • YES - probably (12%, 9 Votes)
    
    
  • Being assessed at the moment (5%, 4 Votes)
    
    
  • NOT SURE - never been assessed (31%, 24 Votes)
    
    
  • NO (14%, 11 Votes)
    
    
    Total Voters: 77
    

 

[Valentijn]

I guess you can remove my "yes" vote, and change it to a "no". I assumed you were asking about OI in general, but it looks like you just don't care anything except POTS for the poll. You might want to clarify that for other people who don't know the difference between OI and POTS as well.

 

[BurnA]

What does yes - probably mean ?

Would it have been better to have :

Yes - I did a tilt table test
Yes - I didn't do a tilt table test but a poor man's test indicates I probably have
No - I did a tilt table test and it was negative
No - my poor man's test was negative.

Or something to that effect?

 

[charles shepherd]

I guess you can remove my "yes" vote, and change it to a "no". I assumed you were asking about OI in general, but it looks like you just don't care anything except POTS for the poll. You might want to clarify that for other people who don't know the difference between OI and POTS as well.

I'm sorry but I don't think that the MEA website tool allows us to fiddle with the way people have voted

The title of the poll does state quite clearly that we are asking about having a diagnosis of PoTS in addition to ME/CFS

 

[JohnM]

I have also had to vote "no".

Am I wrong in my understanding that POTS is an OI subset? Likewise, in my anecdotal experience, it is difficult to obtain any OI diagnosis in the UK, not just POTS; I have never been referred for any 'official' table-tilt test.

I had to conduct my own home test - http://phoenixrising.me/treating-cf...hostatic-intolerance-chronic-fatigue-syndrome - which highlighted issues with both systolic and intermittent diastolic hypotension, and a narrow pulse pressure (as low as 12 mm Hg), as well as episodes of bradycardia (as low 42bmp). It was only on presentation of this information that my GP offered me a 24hr BP test, which confirmed my findings.

I was put on a course of fludrocortisone, which helped initially, but the effects wore off after a couple of weeks or so .. not unusual given what I've read here on the forum. Also, not unusually, concerns I raised with a cardiologist in regard to narrowing pulse pressure he dismissed out of hand; even refused to look at the charts I had prepared from readings taken over a period of a few months .. go figure? I did at least get a 'chemical' stress test done to rule out angina, given my other symptoms and family history.A year or so down the line from then (8 yrs into this awful disease), I am now starting to develop POTS .. more often a raise of more than 30bpm from a low base, but intermittently will go above 120bpm. My OI issues do fluctuate, and seem to be linked in with the severity of my other symptoms on any given day/time.

Apologies on the long post, but I do concur with others who raised the point that all OI/NMH issues should be addressed, including POTS.

 

[charles shepherd]

What does yes - probably mean ?

Would it have been better to have :

Yes - I did a tilt table test
Yes - I didn't do a tilt table test but a poor man's test indicates I probably have
No - I did a tilt table test and it was negative
No - my poor man's test was negative.

Or something to that effect?

I'm afraid the MEA website tool that we use in this monthly poll does not allow for a long question or longer answers

So we have to have a short question with a small number of very short answers

I know it is not ideal….

A lot of people here in the UK have been diagnosed with PoTS using the 10 minute standing test - which, in combination with a good clinical history and physical examination for evidence of venous pooling in the lower limbs, provides a fairly good indication as to whether someone has PoTS

If we had added the TT test to the answers we would have to add the 10 minute standing test as well

The tilt table test result obviously provides further confirmatory evidence of PoTS

 

[Valentijn]

Heart rate when standing for 10 minutes would be a very poor method for diagnosing POTS. Yes, it might catch tachycardia, but says nothing about what is going on beyond that.

I'd hope any doctor detecting tachycardia would send the patient for proper diagnosis via a Tilt Table Test, especially since that's the only way any sort of intelligent treatment can be safely attempted.

 

[ryan31337]

Heart rate when standing for 10 minutes would be a very poor method for diagnosing POTS. Yes, it might catch tachycardia, but says nothing about what is going on beyond that.

I'm not disagreeing with you per se, I'm not qualified to argue for or against, but for reference my cardiologist investigates POTS without TTT. Essentially his protocol is a 10 minute active stand if you haven't previously experienced syncope, or a full TTT if you have. Both with beat-to-beat BP monitoring and ECG.

This came as a bit of a surprise to me and I haven't seen him again yet to quiz him further. It's sufficient to meet the guidelines of diagnosis but I'd agree that I'd have thought seeing what happens 'later on' would be useful too. That said he is very well regarded and an advisor to a big UK POTS charity (alongside Prof Newton and Dr Grubb) so I'd be very surprised if he didn't know what he was doing.

 

[charles shepherd]

After years of what probably should have been labelled NMH, I now have symptoms resembling (no diagnosis) of hypertensive POTS. I was given a TTT recently, felt terrible, and my standing BP was in the range 224/125 with high pulse. Not sure if this warrants a diagnosis of hypertensive POTs as the doctor seemed unfamiliar with the term 'POTS'.

Re hypertensive PoTS >>

From the new MEA publication on ME/CFS and PoTS:

What is PoTS?


PoTS, or postural orthostatic tachycardia syndrome, is a condition that is caused by a failure of the autonomic nervous system (ANS) - which helps to control pulse rate and blood flow to vital organs - to respond appropriately when we stand up, or try to remain standing.


In terms of simple human plumbing, when we stand up around 500cc of blood descends from the chest into the abdomen and lower limbs. It the ANS is functioning normally, messages are then sent from the brain to produce a rise in heart rate of about 10 to 20 beats per minute, along with a constriction of the blood vessels. As a result, blood flow to the brain is maintained and life goes on as normal.


In PoTS, there is a failure of this ANS response mechanism with inadequate constriction of the blood vessels and a larger rise in pulse rate. Blood flow to the brain then falls- which is called cerebral hypoperfusion - and this leads to characteristic symptoms of PoTS: dizziness, feeling lightheaded or faint when moving from lying to standing (=pre-syncope), and sometimes even fainting (=syncope).


Blood pressure usually remains fairly normal. However, there is a sub-group of people with PoTS who have hypertension/raised blood pressure, which is associated with a hyperadrenergic (ie increased noradrenaline) state. They have profuse sweating, tremulousness, and tachycardia (high pulse rate). And because there is an overlap with what is called neurally mediated hypotension, there is another sub-group people with PoTS who experience a drop in blood pressure on standing up.


PoTS tends to affect people between the age of 15 to 50 and is four times more common in females.


A common misconception is that PoTS is caused by deconditioning. However, the PoTS UK survey found that 66% of people were taking regular aerobic exercise before the onset of their PoTS.

 

[Hutan]

I think it's possible to get overly prescriptive about the various forms of orthostatic intolerance. One morning I can have classic POTS with the 30 + beats per minute increase on standing with little change in blood pressure. If I then had to go in to see my doctor and had to stand on the tram for a while, she might see that my blood pressure goes up a lot on standing as well as the heart rate increase, sweating and more. Conversely, sometimes upon standing, my blood pressure can drop while my heart rate increases. If I am standing for any length of time e.g. doing the dishes, my pulse pressure often narrows a great deal.

I think, for many people, the expression of orthostatic intolerance varies. Therefore, what people are diagnosed with depends on what is happening at the moment or the day or even the month that they were measured in. That's why I think it is usually more useful when talking about symptoms of ME to refer to orthostatic intolerance rather than one specific type.

 

[JohnM]

I think, for many people, the expression of orthostatic intolerance varies. Therefore, what people are diagnosed with depends on what is happening at the moment or the day or even the month that they were measured in. That's why I think it is usually more useful when talking about symptoms of ME to refer to orthostatic intolerance rather than one specific type.

Likewise I prefer to use the term orthostatic intolerance in general conversation, and only go into specifics when asked, which is not often - am usually met with a blank face.

I think you can imply that a specific OI diagnosis can be difficult to reach, due to the variable nature of ME symptoms and/or specific readings which are only snapshots in time - of limited use without context. For myself, I would not wish to undertake any treatment, unless a definitive diagnosis could be shown.

Off topic a little maybe, but do our various OI issues also offer evidence for supporting the view that we can/do have difficulty in maintaining homeostasis? I think yes, but would be good to have someone else confirm or otherwise .. thanks in advance.

 

[Cinders66]

Orthostatic intolerance (OI), along with autonomic nervous system dysfunction, is extremely common in ME/CFS and we fully recognise this fact in all the information we send out to both doctors and people with ME/CFS

We have an MEA information leaflet that provides detailed information on the cause, symptoms and management of OI in ME/CFS:

http://www.meassociation.org.uk/shop/management-leaflets/orthostatic-intolerance/

So this is not a subject that is being ignored

However, PoTS is a specific aspect of ANS dysfunction that affects a significant minority of people with ME/CFS

And it often remains unrecognised or misdiagnesed by doctors as being anxiety, panic attacks, stress or even hypochondriasis

The CMRC decided that there needs to be much more attention and medical education paid to the role of PoTS in ME/CFS - which is why there was a Monday afternoon workshop at the CMRC conference in Newcastle that was led by Professor Julia Newton and representatives from PoTS UK

I think it was the best attended workshop on the day!

I am also about to produce a new MEA information leaflet on PoTS in ME/CFS

So this is why we are asking about PoTS in this month's MEA survey

And I would agree that we ought to also do a survey on OI - but not next month as I think we need to return to the subject of the PACE trial data and what now happens to the NICE guideline on ME/CFS.......

Dr Charles Shepherd
Hon Medical Adviser, MEA

I'm pleased the POTS workshop was well attended but not that the other workshops which, included severe ME, probably therefore got less attention. As the severe represent 25% and the most suffering and should be a red urgent highlight area I don't agree with it being an optional workshop. To get away from the BPS fatigue narrative you could focus on the severe. I appreciate there was a presentation on the very small ME Research severe study at the CMRC but it still wasn't the same as a plenary session/debate etc.