Severe difficulties with eating in ME/CFS

[Carercns]

Just dug this out. Local rehabers sent info and this section..

 

[Sean]

Patients being 'overachievers' pre-onset was yet another psycho-behavioural trope about us for a while. Some still believe it.

EDIT: Snap!

 

[N_Dina]

I have asked this question before in a different topic (devoted to a case study about AAG), but would like to raise it here as well: why are ME/CFS patients not routinely tested for autoimmune autonomic ganglionopathy? This condition implies severe dysautonomia, abnormalities in pupillometry, sweating abnormalities and severe dysfunction in GI motility. It is regarded as rare, but not that many doctors have heard about this condition in order to refer patients to a knowledgeable neurologist. The blood test for ganglionic ACHR receptor antibodies is positive in 50% of the cases. The test is included in the Mayo dysautonomia blood panel.

 

[Jonathan Edwards]

This condition implies severe dysautonomia, abnormalities in pupillometry, sweating abnormalities and severe dysfunction in GI motility.

I don't think there is any suggestion that people with ME/CFS have these symptoms. As Nightsong has pointed out, the picture of 'POTS' is not actually dysautonomia in this sense. In POTS the autonomic nervous system seems to be working - in responding to standing with tachycardia. My memory is that people with dysautonomia often have uncontrollable diarrhoea, which is not a feature of ME/CFS. And so on.

 

[N_Dina]

I don't think there is any suggestion that people with ME/CFS have these symptoms. As Nightsong has pointed out, the picture of 'POTS' is not actually dysautonomia in this sense. In POTS the autonomic nervous system seems to be working - in responding to standing with tachycardia. My memory is that people with dysautonomia often have uncontrollable diarrhoea, which is not a feature of ME/CFS. And so on.

Thank you very much for pointing this out.

Yes, I do now understand that this blood pressure and heart rate orthostatic response is preserved in patients with POTS and/or ME/CFS. It’s other components of autonomic failure (severe GI dysmotility in the form of severe constipation & early satiety) in people with AAG which made me interested in this condition.

 

[Jonathan Edwards]

(severe GI dysmotility in the form of severe constipation & early satiety)

That sounds a bit like Hirschsprung's disease with ganglionic agenesis (rather than diarrhoea in the Shy-Drager picture). Clearly this is a complicated field. I think the simple point is that people with ME/CFS don't really have generalised dysautonomia - of whatever sort.

 

[Formerhuman]

I don't think there is any suggestion that people with ME/CFS have these symptoms. As Nightsong has pointed out, the picture of 'POTS' is not actually dysautonomia in this sense. In POTS the autonomic nervous system seems to be working - in responding to standing with tachycardia. My memory is that people with dysautonomia often have uncontrollable diarrhoea, which is not a feature of ME/CFS. And so on.

Do some patients with Sjogren's have dysautonomia?