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Reading the BSG literature it seems that things go much further than ignorance and social attitudes. A case is being made for specific withdrawal or withholding of feeding tubes in the ME/MUS category based on bogus BPS theorising and new invented diagnostic names. It is pretty worrying stuff.

Eating difficulties sounds a reasonable way to cover it.

This is clearly an important element. However, the literature from the British Society for Gastroenterology suggests a deliberate disincentive to use feeding support measures in people with ME or 'MUS'.

I think that is too general. It could include not being able to get to the shops - and for some probably does. We need an agreed description of the sort of problem that occurs despite lots of people being around offering food and can lead to starvation.

I probably cannot give much more detail of any reliability. The hypothalamus is where temperature is regulated and where the central nausea centre is. It almost certainly controls shivering as well as fever. Autonomic discharges are features of various adverse states and I am not good on the...

Those are the defined groups. My understanding is that many PWME may have OI for neither reason. OI is not necessarily due to haemodynamic failure. So rather than being an umbrella term it is a term for a particular symptom. If maybe 20% of ME cases actually have POT then criteria for POT are...

I think it should be 0.15 per 1000 per year. Assuming people only get ME once that would give about 1% lifetime rate which I think fits with about 0.2-0.4% prevalence.

I can see the problem but I think it may be important not to be squeamish about this. Lives depend on it. I can think of various psychiatric causes of eating disorders where we can equally say that the brain problem is downstream of some other cause. People treated for craniopharyngeoma can...

Although ME does get compared with MS they have nothing in common in terms of mechanism as far as we know. MS produces swallowing problems by demyelination of central connections of swallowing nerves (chiefly 9th cranial nerve). ME involves nothing similar that we know of or have reason to...

Good points @Simon M. Feeling terrible when trying to move with flu is attributed to cytokines like TNF and Interferon sensitising nerves. The precise mechanism may not be clear but release of prostanoids (potent neural sensitisers, as indicated by the effect of ibuprofen) would be an obvious...

Thanks that worked fine. So the story highlights this antagonism between nutrition units and 'ME specialists and family'. Why, why, why, cannot these 'ME specialists' see the problem being created? No doubt there are shortcomings to the nutritional care - we have seen why that is likely - but...

Unfortunately, I cannot get into the Times. It may be because I have used their free trial before.

I cannot access the Times piece without paying it seems.

And I think this is exactly the wrong thing to be feeding to the public perception. Of course it is right but it is a red flag to the bull. It is also misleading to the extent that there isn't actually any scientific evidence to support anything.

Maybe step away for a bit. But those documents are very revealing. They show the depth of the problem in gastroenterology and its nature very clearly.

I agree that I am putting forward my own theory but I would argue that it is a reasonable working theory in line with what we know about ME - that it is a very unusual illness characterised by intolerances of a whole range of stimuli. What I am advocating against are theories of mechanisms for...

I suspect they mediate much of the symptomatology but then the question is what is upsetting the hypothalamus and vagus, which may be immunological.

Yes, all through the vagus nerve, which operates according the instructions of the hypothalamus. We have no evidence for anything being primarily wrong in the gut. It is hard to believe that there are enough different things primarily wrong in the gut to make eating impossible. If the problem is...

It is worth reading the stuff cited above in the thread "One author of the BSG’s guideline on functional dyspepsia, Dr Peter Paine (from the Salford Royal NHS Foundation Trust), wrote about ME/CFS as a central sensitization disorder that should require removal of tube feeding and rehab, in a...

They emphasise that the cause of inability to eat is physical, contrasting it with psychological.