MEA Summary Review: The dysfunctional autonomic nervous system in ME/CFS

Posted today (Jan 24 2018) by the ME Association.

I thought this forum was a good one for discussion but if this thread should be posted elsewhere then please feel free to ask for it to be moved.

I have not yet read this. And I can't join in any debate. No medical expertise plus "brain fog" makes that kind of thing impossible for me (not to mention energy draining). But I hope this has some useful information.

http://www.meassociation.org.uk/201...mic-nervous-system-in-me-cfs-24-january-2018/

 

Sleep...A downstream effect. I should think well they know it.

 

It's a double whammy for people with M.E.. M.E. is poorly understood and adequate GP care and specialist services patchy at best. On top of that the dysautonomia associated with M.E. is also poorly understood with care provision limited.

I suspect that specialist services that cover both are like hens teeth.

My orthostatic problems have worsened significantly over the last 6 months or so. After four GP visits my blood pressure was finally taken sitting and standing, and orthostatic hypotension diagnosed. I suspect that I also have POTS.

I saw a different GP in the practice at the end of last year and he was openly hostile to the possibility of ANS dysfunction. He was condescending, patronising and maintained that there was no medication to help. It was one of the most distressing consultations I've had for years. My husband commented that it was deja vu as it took me nearly 5 years to get a diagnosis for M.E., with doctor after Doctor refusing to believe that activity made my symptoms worse.

I saw my usual GP recently and she has kindly agreed to refer me to a cardiologist who specialise in POTS (and they aren't thick on the ground). I'm not sure how much she believes in the existence of POTS but at least she did acknowledge the distress the symptoms are causing me.

Looking back I've had orthostatic problems for years. But my local specialist M.E. service doesn't even cover this area of care despite the issue being raised at meetings with the provider.

 

Generally it's only diagnosed as POTS if blood pressure remains fairly normal - otherwise there's a clear cause for the tachycardia, as it's compensating for the hypotension. Treating hypotension with POTS drugs would probably be a complete disaster.

 

@Valentijn it is possible to have hypotension and POTS, although it is challenging to manage.

The POTS UK website states:

http://www.potsuk.org/types_of_pots

 

I've been told my blood pressure is normal after a tilt-table (well one of those normal, but...).

However, if you look at the print-out from my tilt-table the blood pressure drops suddenly and that is when the tachycardia starts, and then the blood pressure rises again. So presumably the tachycardia is a response to the initial drop in blood pressure, and it successfully maintains the blood pressure in this way.

Overall then this means my blood pressure is normal, but it looks to me like the drop in blood pressure is causing the tachycardia. Unfortunately I didn't see the print-out from both tilt-table tests I have had so I don't know if this is a regular occurence.