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Do we have good documentation that gastroparesis is a problem in PWME that causes symptoms? This is where I think we lack essential data. To my mind it might be better if we had research that said 'There is no gastroparesis in ME, and no mast cell activation, and no malabsorption and no SIBO...

Yes, I raised light sensitivity because it might seem central but it is still not central in the central sensitisation sense. So case unproven. Tipping into PEM where any stimulus is too much seems to me to distinguish the valid concept of ME from what I have (and had fifty years ago). My...

You may be right but I am not convinced that there are any 'associated comorbid conditions' of relevance. The idea that there is some link between ME and hypermobile states looks likely to be groundless. The problems that there is a group of fringe quasi-academic physicians with large private...

I don't think anyone knows. I think discussion in terms of 'faulty interpretation of normal signals' ends up meaning whatever you like unless one is specific. All signals will have a normal function at the right time. Interpretation may just mean the way another sort of signal follows the first...

That may well be the case. The question is how to provide care guidelines that prevent mismanagement locally. This is where I see the NICE guideline as beating about the bush. Maybe there should be a national advisory service specifically for weight loss in the context of ME and the guidelines...

Video-fluoroscopy has fallen out of failure because of radiation dosage. I don't think any test can guarantee that there isn't a risk. With a health service staffed with care assistants with no real training one has to assume that someone will do something very stupid at any time. There has to...

Trouble is, most of it looks like hearsay. I worry that this sort of poorly validated information may actually aggravate the problem.

I guess it is to avoid aspiration of gastric contents. The presence of a tube is likely to make the oesophageal sphincter inefficient. If acid comes back up and goes into the lungs that is potentially lethal. There is also always the possibility that the tube will pull back if maybe the person...

I strongly suspect that those two papers are not actually studying people with EDS but the ill-defined group of people who get labelled as hypermobility syndrome/'EDS-HT' collected by clinics with very biased referral inputs.

If the signalling is neural, no. If it is cytokine or hormonal maybe but maybe not. We have learnt that a lot of chemical signals act quite locally. If there is a secondary impact on nerve fibres then the effects are all invisible but generalised.

But to me faulty signalling makes much more sense than lack of ATP. Lack of ATP should last for a minute or two, maybe twenty minutes after a marathon run. If the faulty signalling involves hormonal signals or sleep centre cycles or other systems that audit activity over longer periods then...

The puzzle is that nowhere is there a policy that people should be denied nutritional support because of a lack of belief in a physical inability to eat. People with anorexia nervosa get nutritional support by whatever means needed, as I understand it. The psychosomatic/physical attribution does...

The paper and abstract on gastric emptying are not very impressive. The paper seemed to have no controls. I think it is hard to know how relevant the findings would be to the severe weight loss cases anyway.

What bothers me most is the framing of this in terms of an antagonism. I would like to see publications that include parenteral feeding experts, gastroenterologists and nutritionists. Although we mayn't be able to base it on figures I do not doubt that there are people with an illness that is...

Yes, I remember reading this set of case reports before, now. It is quite helpful in some respects but it also highlights the lack of any systematic data on the problem - having to rely on five replies to a questionnaire. The new NICE guideline does have some comments - again I now remember -...

Of course I should have searched PubMed various ways - there is one paper on this. Not surprisingly by Helen Baxter, Willy Weir and Nigel Speight from 2021. I am going to have a look.

There are some tricky questions involved. My guess is that maybe 20,000 people are diagnosed with ME/CFS in the UK each year. We hear of someone passing away, with inability to eat as part of the problem, maybe once every two years. A guesstimate might be that one in 10,000 PWME get to this...

We hear of PWME who have been unable to eat and some who are no longer with us. Many members will readily recall five names, including a much loved member. I have not searched yet but I am not aware of any formal published literature on this problem. Surely there should be. In fact it should...