I didn't come to you for judgement
your swords are useless here
of who will break first
is long since moot
I fear it's
something I will
prove time and time again
it's not the
revelation it was
So let's move on
to the twenty-first century
and make a decision
that doesn't involve grinding
This is the final poem to the sequence Count your Spoons and The SEP.
If you do have a diagnosis of CFS/ME, I'd be looking for alternative treatable conditions. Because for now, it is difficult to say what CFS is other than a dumping ground, that may (or may not) include a condition that can be separated out as CFS. There can be no doubt, the one we've been dealing with is not CFS as such, or postural hypotension, or POTs because of a failed a test that is almost universally accepted as 100% specific. Unfortunately, despite the diagnostic criteria being available in Up to Date and in other medical papers his condition it has not been recognized by the local endocrinologists. Which leaves us counting spoons, like everybody else. But if anyone is aware of people who think they may be misdiagnosed, I'm thinking seriously about going to the health and disability commissioner, to ensure that NZ doctors properly rule out endocrine and other issues, before randomly diagnosing people with CFS, as that is theoretically the British/Australian criteria.
Spoon Theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Up to Date: Diagnosis of adrenal insufficiency in adults (you will need a log in to get any more than a peek)
Isolated corticotrophin deficiency, Andrioli et al (2006)
Adrenal insufficiency, Charmandari et al 2014 http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2813%2961684-0/abstract (p.s. sometimes you can find a version of this online that is not a paid version, but as it is relatively new, I suggest payment is ethical if you have the money)
CFS as a dumping ground of hard to diagnose illnesses
I'd have to agree with this. For instance, the diagnosis of CFS was made for my son despite the fact that he didn't fit the CDC (The US 1994 Fukuda) definition of CFS, the definition used in Australia and Britain, is so vague as to be nothing more than a dumping ground of "too hard." Theoretically other conditions are supposed to be ruled out. But that certainly was not the case.
One possible misdiagnosis of CFS / ME is POTS: http://www.webmd.boots.com/healthy-ageing/news/20140617/misdiagnosed-condition-confused-with-me-cfs
PoTS is generally and most safely treated with fludrocortisone. Unfortunately this not only didn't work for us, but made the symptoms worse, still it should be seriously looked at as an alternative diagnosis, as it is treatable. The same article also indicated a link with Ehlers-Danlos syndrome (a connective tissue condition with joint hyper-mobility and may have problems with skin, tendons, and bloodvessels etc.