Newton et al: POTS Clinical Characteristics of novel subgroup CFS

Firestormm

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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.
Yep. Sound like moi too. It's in the Q & A at the end if I remember correctly - last 10-15 minutes I suppose.. A balding older fellow at the front asks and she talks about it. Though there are probably others things that could account for this I suppose - I also find this same desire when having a turbulent, heart racing, moment during the night or when trying to sleep and in a prone position. Who know? But it would narrow things down somewhat :)
 

Valentijn

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At the risk of offending I will add my own observations over 12 years - no sub-grouping - these particular symptoms are part of the whole experience of ME and wax and wane like all others.
That could be an interesting alternative explanation: not that 13% (I think?) of ME patients have POTS, but that 13% of ME patients are susceptible to POTS symptoms at any given time.

I usually just have NMH symptoms, but I've also had episodes lasting 1-3 weeks that were more along the lines of severe POTS.
 

Firestormm

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At the risk of offending I will add my own observations over 12 years - no sub-grouping - these particular symptoms are part of the whole experience of ME and wax and wane like all others.
You might then like to listen to her presentation Enid. She talks (from memory) of 90% of people suffering with some form of autonomic dysfunction. Mind you I wouldn't rely on my memory right now. I need to go back through it all and make some notes. Might try a summary at some point. It was THAT good :)

Edit: £900,000 of the MRC money went to Newcastle University split equally across two projects - that's around 60%. Half of which is specifically for Julia's work here. I would suggest that based on her presentation she believes that all fatigue might have autonomic dysfunction to a greater or lesser extent at it's heart across all conditions for which fatigue is an issue. Though admittedly I need to go back through this presentation again at some point soon.
 

ramakentesh

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There have been numerous studies that have had often paradoxical results. A recent study from Vanderbilt suggested POTS CFS and CFS without POTS had similar indicators of sympathetic activation and autonomic HRV.
 

Bob

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I might have missed it, but I can't see it mentioned in this thread.
There's an editorial in the Journal of Internal Medicine commenting on Newton's POTS paper, written by Nijs.
(I thought that Nijs was of the CBT school of thought, but the editorial suggests otherwise.)

Postural orthostatic tachycardia syndrome as a clinically important subgroup of chronic fatigue syndrome: further evidence for central nervous system dysfunctioning
J. Nijs, K. Ickmans
Article first published online: 8 Feb 2013
DOI: 10.1111/joim.12034
http://onlinelibrary.wiley.com/doi/10.1111/joim.12034/full

PDF:
http://onlinelibrary.wiley.com/doi/10.1111/joim.12034/pdf

An interesting extract:
Taken together, the study by Lewis and colleagues [1] further supports the notion of CFS being a central nervous system disorder. This view is supported by numerous studies evidencing autonomic nervous system malfunctioning in CFS; Professor Newton's group has contributed substantially to this development [13-15]. Many people with CFS feel most comfortable attributing their illness to a disorder of the central nervous system, and this opinion seems to be rational given the cluster of symptoms that occur in the illness. Symptoms like fatigue, non-refreshing sleep, concentration difficulties, impairments in short-term memory, sensitivity to variable stimuli like bright light and chemicals, a decreased load tolerance and widespread pain are suggestive of central nervous system involvement.