Thank you so much for your work, Graham!
I know, it' not relevant here, but I'll add some gems from Germany. We don't have guidelines for ME/CFS, because this illness apparently doesn't exist (here), but CFS does get a chapter in the "guidelines for tiredness".
The Chronic Fatigue Syndrome (CFS) is a rare consultation result.
The, in the Canadian document - without any reasonable consequence - proposed tests, have combined a iatrogenic pathogenization potential bordering on body injury.
It is explicitly stated that not even blood pressure or ferritin should be checked!!!
The document wonders, why CFS is so often publicly discussed in the UK. Even the NICE guidelines are regarded as too much fuss about a mostly self-diagnosed, imaginary condition, but are mentioned as positive in comparison to the CCC (that convey the dangerous believe that CFS is somatic
).
By the way:
Labeling the symptoms as "myalgic encephalomyelitis" is associated with a poorer prognosis than other diagnostic categories.
It's also explained that patients fear to improve because it would mean to face tasks and responsibilities, that are perceived as a burden. Doctors are told to explain to patients, that these unwanted responsibilities could also be seen as a chance!
In my region, the local guidelines even forbade to offer any tests for patients with the diagnosis CFS until december 2014. Doctors got into trouble, if they tried (the only CFS-specialist wasn't allowed to practice anymore and left). Additionally it was officially labeled as "inconsiderate towards colleagues" if an existing diagnosis of depression was changed into a CFS diagnosis. These local guidelines had to be removed in 2015 but seem to still exist in the minds (my GP refuses to treat even the most obvious symptoms or to refer me anywhere, apparently it's no reason to worry and fairly normal, if you're in your 30ies and bed-bound).
Can't wait for a blood test from Stanford to end this farce! Sorry, for the irrelevant detour to Germany, couldn't resist.
