NZ Herald running a series on EDS

I agree with that - the danger of symptoms being dismissed as ‘just due to...’. But it seems to me, and I may well be wrong, that the treatment of those symptoms is very different if they are seen as psychological. Much more likely to not be offered treatment.

 

Things are more complicated. One of the most important lessons I learned as a young doctor related to a young man with weight loss. I was in charge of the case because my boss never bothered to take interest in the routine admission cases. I spent several weeks investigating the boy, assuming that my knowledge of the medical textbooks would cover the options. He lost more weight, developed pneumonia and became close to death. At this point another consultant saw his case and took him over. Whether he lived or not I never new. But it was pointed out to me that his problem was almost certainly due to a psychosis of some unknown sort - something I knew nothing of and had no training in. I realised that I might not know all I needed to know. I don't think any body really knew what was going on but I realised that I did not know enough to judge. That was the point when I starting asking for advice. When my wife fell ill that message came home very hard.

The problem is that there are a lot of things in medicine that nobody understands.

And the real disaster in health care at least in the UK is that mental illness no longer has any effective care structure. Avoidable deaths in young people are much more likely to be due to mental illness than other medical issues. Not taking mental health issues seriously is probably a much bigger problem than not taking medical issues seriously.

 

This is probably too much for a solo project, but with a ME/CF group it can be done.

1. Don't let them off
2. Don't give up
3. Write everything down, with dates, times and details.
4. Organize, get some publicity. There are methods for doing this, one needs to get some press contacts.
5. Assemble an email list. If you have 1000 people in the list, a hundred may be willing to call/write/demonstrate in public. 100 people can do 1000x more than one.

Of course it's easy to type "Go do that!", not so easy to do it. I haven't done any of that myself.
I do see that groups/causes that get results do it by pushing TPTB to heed them, not by asking nicely and waiting. It's not in my nature to be demanding, and I've found (surprise, not) that bureaucracies respond by giving the back of the hand. I think you have a great story, it needs to be combined with others like it and told in public.

I'm very thankful we don't have NHS in my country. Yet.

 

Journalists will get nearly any technical subject wrong, nearly every time. Accidents happen and occasionally a correct story slips out, an event which would be much to the annoyance of the editor, if they knew.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5115638/

 

This is an exceedingly rare form with joint contractures - more or less the opposite of hyper mobility.

I don't think it has any real relevance to ME/CFS.

 

The paper has relevance to a connection between arthrogryposis and EDS.

 

I don't really follow that. The arthrogrypotic form of EDS has no relation to other forms of EDS. It is a separate disease due to a separate gene. It is just that it has a parallel type of genetics and there are some similarities - although in this case not much.

Calling all these separate genetic defects EDS is entirely arbitrary. They are no more similar than one sort of EDS is to Marfan syndrome really. They might as well all have different names.