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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...

I have had a thought about what S4ME might be able to do about all this, but I will post that next. In my experience people with weight loss from inability to eat get lost in the system not because they are thought to be psychosomatic or psychiatric cases but simply because of the way medicine...

I just don't see PWME as having the sort of problem I have been used to seeing in people with heart failure or other organ system failure where ATP mediated energy supply is limited. I don't see people with ME in the clinic but I have got to know quite a number of people with mild or moderate...

Moderation note: A series of posts have been moved from United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media. There are more helpful discussions on that thread also relevant to this thread, ************** I see a different side to the problem, keeping away...

Hi @Debwaldy, Sorry this is complicated, as you point out. Nuclear autoantigens showing an 'ANA' include DNA (not a protein) and nucleoproteins. Lupus is the one autoimmune disease that has a whole range of autoantibodies, probably because it involves an indiscriminate failure of...

Yes @JemPD, you have laid it out clearly. Things aren't easy but maybe it helps to tease things out sometimes. We need more documentation just of the natural history of ME. Which is why I keep telling the government working party that we need dedicated academic clinicians who see PWME year in...

Yes, I don't think we have reason to think ME is a risk factor for severe infection. And tes an adverse reaction to Paxlovid. I don't think we have any useful information on risk of ME worsening with a further infection (rather than an initiating one). I agree that it is something that comes to...

To be fair, I know of no evidence for PWME being more at risk with Covid. Categories like 'immune' or 'neurological' are too vague to be relevant. We don't have any strong theoretical reason to think PWME would be more at risk either. If anything on the theoretical side there is a reasonable...

Maybe, together with the MAIT T cell error, we are seeing machine with a remarkable capacity to veridically simulate the ill-informed muddle-upness of human much thinking.

This is interesting in that it shows that the bot is still not quite able to avoid generating contradictory arguments. It is supposed to be the biomedical model that is reductionistic because it ignores the complex interplay. The irony is that this sort of contradictory argument is of course an...

I very much agree with Simon's analysis. This study may show an abnormality of signalling that, maybe amongst other things, is involved in vascular tone. I agree that to link that to reduced energy output is implausible in view of the single CPET data, and, indeed, to my mind, the very nature of...

Another approach would be to say that serum samples before and after treatment would be stored and if a convincing positive result obtained these could be run for cytokines. If nothing changed that would be useful evidence for the effect not being through those cytokines (no particular reason...

I would be very happy to advise on a draft protocol.

I am not clear quite why Nicola wants an 'inflammatory panel'. There is no evidence at present for any measurable inflammation linked to ME symptomatology. If the hypothesis is that vagal nerve stimulation reduces inflammation and the study showed reduced inflammatory markers after treatment...

I think you are being far too generous. Reliable tests don't have disclaimers like this. They don't need them. Tests used in research are published in scientific literature, and paid for by grants, not sold on the open market. As a clinician I wouldn't have gone within a million miles of a...

I think that may just be James Coyne being unclear, as he often is.