UK: HealthSense, formerly called Healthwatch

That’s good to hear. Thanks for the context. Much as propagation/repetition of misinformation about ME/CFS obviously annoys me (especially when used as an argument against one of the few people taking it seriously) I’d much rather have people who are open to listening than those who aren’t.

 

I must be doing my pointing out wrongly ;-) I will probably meet NR in person on 28th November as I have been persuaded by the newsletter editor Mandy Payne to go to their Awards night...and, as she says "put faces to names and maybe get the chance to put some points over and make some contacts" https://www.healthsense-uk.org/news...-ceremony-in-london-thursday-28-november.html

 

Yes, exactly. He seems to think it’s either genetic or it isn’t but it’s not as simple or as binary as that.

 

Didn't Florence Nightingale famously get ME/CFS (as far as we can tell from historic symptom descriptions and past diagnostic labels) and other historical personages so I'm not sure why he'd describe it as a new entity (and implying what exactly by so doing) ?

That said, globalisation has made it easier for humans to travel and spread viruses ( and we are encroaching into nature more in some parts of the world) , so wouldn't you logically expect the number of people experiencing viruses and post viral syndromes to have increased?

 

Not necessarily. People who develop ME/CFS may be destined to develop it for reasons unrelated to viruses over perhaps a 5-10 year time window. But a virus may trip the process into action. Since people have always tended to get a virus of some sort at least every other year the rate might not change much.

 

Would you like to explain a bit about this time window? Do you mean that there might only be a 5-10 year time window during which someone could develop ME/CFS? If so, why would that be the case, rather than a lifelong vulnerability? (I have a feeling I'm misunderstanding you!)

 

I am suggesting that some underlying process gradually shifts the person's physiology into a position where an additional stimulus makes it evident. We know that disease processes can evolve silently over 5-10 year spans - that is true for rheumatoid and diabetes for instance. Longer than that would be hard to establish I think, but could occur. This would be different from just life long susceptibility. There would be a third factor (in addition to genes and an environmental trigger) that might be set off by another environmental event or just start up of its own accord by chance.

 

Environmental exposures are a possibility, but you cannot get it looked at.
In 2001, the family were impacted by agricultural spraying of glypgosate
Affected eyes in particular.
HSE field officer did come out.
Pesticide Impact Appraisal Panel notifed.
Big black hole ensued......
I developed chemical insensitivity.as a result.

 

Gosh. This explains why she was extremely hostile to me on the Healthsense forum.

 

I am surprised that Caroline R's and her malign influence had passed you by...!? I think I have been around all this stuff and nonsense, not 'Health-Sense' far too long.

Trouble is, despite my advancing years, my memories and recall are intact!
Perhaps I am reincarnated as a elephant!?

 

She was so rude, I just decided to ignore her.

 

How wise you were..!