Royal College of Physicians article: "Do you really believe in ME?" by Dr Nina Muirhead

Question: Can the evidence for a genetic component in ME/CFS be used against the view that this is the dustbin of medicine. In other words; is it an argument against the view that ME/CFS represents a collection of all sorts of rare diseases that modern medicine cannot explain and have fairly little in common?

 

I await elucidation.

Or mental clarity.

Whichever comes first.

I am currently unable to understand the question, and what appears to be it's foundational premises basis, so I am hoping that the responses you gain will make it clearer to me.

Then I may be able to answer, if I have one.

So

<shrugs>

ETA - I suppose this is the issue I have

I am, currently, unaware of any such evidence, which surprises me, and makes understanding the intent of your question 'difficult'.

 

In a strange coincidence, here is the obituary of the man responsible! https://www.thetimes.co.uk/edition/register/bill-heine-obituary-06fbbkj7v

 

After watching "Jaws", my eight year old son wouldn't take a bath for three months as he was sure a great white could come in from a fresh water lake through the pipes.

 

You post this as if you think he may have been mistaken.

The very fact that no reports have been made of this occurring suggest it is possible, indeed that it happens all the time, otherwise....where are all the witnesses, or alternatively, what ate all the witnesses?

 

I was jumping back and forth a bit between concepts and I can see how that would be confusing.
Yes, that's correct and is what I was trying to say, that there are many non-Mendelian patterns that can come under genetic conditions.
(Just, my non-Mendelian genetics link had both descriptions of some genetic conditions with specific heritable patterns, which were also mentioned under my genetic conditions/inheritance patterns link, and some further types of genetics that wouldn't necessarily give rise to any specific inheritance pattern--some of the same ones you discussed under familial.)

When I went to school, geneticists really didn't talk about genetic conditions in terms of absolute or non-absolute risk of getting a condition, because it's now known that there are other factors that influence genetic expression besides whether the correct gene(s) is/are actually present or not. (You can have the gene(s) that cause it, but not have the condition, or you could have a version of it that's not clinically relevant. Or, of course, you could have the full clinically relevant version. Or something in between.)

So geneticists talk about whether inheritance patterns are met.

A polygenetic condition or one that had important stochastic (random) components wouldn't meet any specific inheritance pattern (even if it "runs in families" like RA or maybe ME). Thus, what I would call familial (even if I can't recall where I learned that, but as you're using it the same way, I must be using it ok!). Just I have an ever so slightly different explanation why something is familial compared with genetic.

 

or ICF!

 

Within limits I think yes. It strongly supports the idea that ME/CFS is a 'real syndrome' where that implies not just a collection of symptoms and signs but a collection that arises from some common pathophysiological pathway - which is implicit in the concept of a real syndrome even if it is not known.

The common pathway does not need to be the whole causal path for any one person with the illness. There can be be heterogeneity in precipitating factors and in the final expression of the process.

A genetic component pretty much nails a common pathophysiological pathway for at least a good proportion of cases.

What of course would be even more helpful would be if studies showing a genetic factor were then stratified according to features like PEM, or compared with non-ME chronic fatigue and show that the genetic risk tracked to specific features.

 

I guess metaphysician is already a real word so it wouldn't have been a great pun anyway.

Looks like they'll just have to be called transcendentists instead.

 

But, as understand, it doesn’t exclude the possibility that a significant proportion may not share that common pathophysiological pathway. And, of course, the looser the diagnostic criteria, the greater that proportion is likely to be.

I am mindful of the fact that although I have been diagnosed with ME/CFS by several specialists and have very marked PEM, my symptoms to not necessarily conform to “classic ME” – I am borderline on some diagnostic criteria and I frequently find that I do not relate to other people’s descriptions of their symptoms. One of my concerns is that a common pathophysiological pathway may be found for a good proportion of people with ME (which may or may not include me) and that the remainder who do not fit that criterion will be abandoned or thrown under the BPS bus.

 

I think that very unlikely. Once it becomes reasonably clear what the pathway is for the most common form of ME I think it can only become clearer, if only partly so, what the others will be. That has been the way with other sorts of chronic illness with subgroups.

 

In effect one of the major confounding factors would have been removed I guess.

 

There isn't any credible evidence that ME is not a physical illness. What are you talking about, and why would you choose to make such a post?

 

I wondered that. It is clearly a deliberate act of provocation. Given her declared interest in long term conditions
www.sheffield.ac.uk/scharr/sections/hsr/cure/staff/mason_s
one has to presume that it is associated with that.

 

She is a Professor of Emergency Medicine, and from what I gather in this forum, the emergency care sector have no understanding of ME/CFS, and little regard or compassion for pwME. So I suspect this is just more of believing what you have always believed, and still want to believe.