PoTS and ME/CFS - MEA website survey

[charles shepherd]

PoTS and ME/CFS - 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

 

[Valentijn]

I wish it was asking about OI, not POTS. Most ME patients have OI, but it's a fairly small minority with POTS.

And unfortunately the focus on POTS can mislead patients into thinking that they don't have it, or that it's the only thing they should be looking for.

 

[Sasha]

I wish it was asking about OI, not POTS. Most ME patients have OI, but it's a fairly small minority with POTS.

And unfortunately the focus on POTS can mislead patients into thinking that they don't have it, or that it's the only thing they should be looking for.

@charles shepherd - I agree with this comment. When I first got ill, I read for years in the patients' organisations' literature (not just the MEA's) about POTS and didn't recognise it. It turns out that I have the NMH form of OI and it's taken me decades to get a diagnosis, partly because of this emphasis on POTS and "feeling dizzy".

 

[Sidereal]

My impression is that NMH is more common in ME than POTS.

 

[Valentijn]

My impression is that NMH is more common in ME than POTS.

I think that's what the research was showing back in the 1990's. Rowe?

 

[flybro]

I first had symptoms in my mid teens, although I had fallen out of a fair few trees before then. I also had visual problems then too, as I do now.

The symptoms went away in my teens too, and didn't come back until my early 40's.

 

[Old Bones]

My impression is that NMH is more common in ME than POTS.

Based only on my experience, this may be another situation that depends on length of illness. I was clinically diagnosed with NMH shortly after my ME diagnosis. Now, more than twenty-five years later, my OI fits the criteria for POTS. Others, of course, may be completely different.

 

[OverTheHills]

I have a hypothesis that the 'twin peaks' of ME/CFS onset, or better recovery rate for young people frequently followed by relapse in middle age, might in fact be explained by onset of OI in teenage years (sometimes diagnosed as ME/CFS due to large overlap of symptoms) followed by progression of disease decades later.

Of course this is in personal retrospect after more than a decade of full blown ME/CFS +POTS starting in 40s, following on from pre-teenage POTS. I now understand that POTS is what it was, because I didn't have 'dizziness' but did have difficulty standing still, poor circulation, funny immune system. In other words this is an n=1 hypothesis.

Well done to Charles for this survey, I think testing and treatment for OI is the single acheivable thing that would make huge immediate QOL gains for our community. In my view this should be a focus for our political efforts. I am doing what I can in NZ

 

[Sidereal]

Based only on my experience, this may be another situation that depends on length of illness. I was clinically diagnosed with NMH shortly after my ME diagnosis. Now, more than twenty-five years later, my OI fits the criteria for POTS. Others, of course, may be completely different.

I have POTS and it was only when I went from severe ME to moderate that I realised I had NMH also. It kicks in like clockwork with severe sudden presyncope after 45 mins upright. Every single time.

 

[halcyon]

I think that's what the research was showing back in the 1990's. Rowe?

In the Ramsay/Dowsett cohort (420 patients) 69% had autonomic dysfunction (defined as circulation dysfunction, not sure if that means NMH or not) and 21% had orthostatic tachycardia.

 

[halcyon]

I have POTS and it was only when I went from severe ME to moderate that I realised I had NMH also. It kicks in like clockwork with severe sudden presyncope after 45 mins upright. Every single time.

I had no idea I had NMH either until a tilt table test. It's definitely possible to have both, even if you get really hypertensive when upright.

 

[purrsian]

Based only on my experience, this may be another situation that depends on length of illness. I was clinically diagnosed with NMH shortly after my ME diagnosis. Now, more than twenty-five years later, my OI fits the criteria for POTS. Others, of course, may be completely different.

My experience is actually quite similar. I was diagnosed with postural hypotension (not sure if same/similar to NMH as I don't know much about that, but my issue was hypotension) at about 20, at a similar time to my diagnosis of postviral fatigue syndrome. I had maybe a year of postural hypotension issues, then it seemed to subside and my CFS was the major issue. Now that I'm 30, I've developed POTS which I think is actually affecting my life possibly more than the CFS now (although that's still bad). I wonder if many other CFS/POTS patients fit a similar pattern?

The major difference that I see between them is that when first sick, I had presyncope symptoms which I don't have now, and now I have chest tightness/pain that I didn't have back then.

 

[alex3619]

I have OI but not POTS, so had to vote no.

One thing I really like is the regular patient surveys run by the MEA, especially the one on CBT and GET. We need to see this kind of thing more often, including in other countries.

 

[eafw]

Can't find the survey on the MEA home page, anyone got a direct link ?

 

[Valentijn]

When my NMH is bad enough (usually from having recently exceeded limitations), I often get tachycardia as an attempt to compensate for very low pulse pressure. But it still isn't POTS - there's an identifiable underlying cause, and treating it solely as tachycardia would be foolish and dangerous.

 

[purrsian]

Can't find the survey on the MEA home page, anyone got a direct link ?

It's just a little questionnaire on the front page. Scroll down a bit, it's in the centre column at about the same height as the purple headings in the right column that say "Make a donation to help MEA's work", "Contact us" and "quick links"

 

[charles shepherd]

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

 

[Countrygirl]

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'.

 

[Valentijn]

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

POTS is far better known that NMH, in addition to being less common (in ME patients) and easier to diagnose. So it's a bit weird to focus on POTS to the exclusion of the bigger problem.

 

[eafw]

It's just a little questionnaire on the front page. Scroll down a bit, it's in the centre column at about the same height as the purple headings in the right column that say "Make a donation to help MEA's work", "Contact us" and "quick links"

Thanks purrisan, it was easy to find on the "front" page, I was looking on "home".