By David Tuller, DrPH
Holger Klintenberg, a 35-year-old from the southern Swedish city of Jonkoping, has severe ME. His illness began after a bout of mononucleosis (or glandular fever) when he was 19. He has recently experienced difficult interactions with the health care system. His family fears he could be forced into psychiatric care against his and their wishes. They are concerned that the medical professionals overseeing Holger’s care do not understand ME and, in particular, the role of post-exertional malaise, or PEM.
Holger’s situation has attracted international attention, including a petition that currently has over 8,000 signatories. I zoomed a few days ago with Anton Karlsson, Holger’s younger brother, about the current situation. (One correction: Holger met his future wife when he was 23 and got married at 27, not 21 as Anton says in the video.)
I can’t figure out how to post the video on this WordPress blog–that’s got to do with my technological ineptitude, most likely. But you can watch it here, on my Facebook page.
It’s not ME patients who need psychiatric care. Will this madness ever stop?
Authorities routinely abuse people and wreck their lives and then wonder, “Why do the people mistrust and hate us? Why do they not obey orders? Don’t they know they exist to serve us?”
Would it help to write the health authorities a letter, including:
a copy of Holger’s original ME/CFS diagnosis, and
quoting the relevant passages from the new UK NICE draft guidelines specifying what ME/CFS is (serious, debilitating, systemic physical illness, etc), and
that it is not a psychological illness, and
that psych-based treatments are inappropriate and can be dangerous, and
describing very severe ME and its appropriate treatment, and
pointing out that the equivalent US authorities have also dropped the psych narrative since whenever-it-was, and
quoting relevant bits from their official guidelines, and
citing previous attempts to treat ME/CFS patients as mentally ill that have resulted in no improvement, deterioration, or death, and
maybe getting signatures and/or separate letters from doctors and medical researchers including Dr Bercquist (sp?) in Sweden, and any other ME/CFS- knowledgeable Swedish professionals?
Although (I’m assuming) the equivalent Swedish guidelines are still stuck in the psych paradigm, I do think the newly changed NICE guidelines – esp since they’re backed up by the US guidelines – might carry some weight with them, since the UK has been the originator and centre of the psych/BPS belief system, to which (IIUC) European practitioners still refer as their evidence base for treating ME as a psych issue (eg PACE, Cochrane Reviews, etc).
The point is, to make sure they have been made aware that medical opinion on ME/CFS has changed radically in recent years, and
that CBT and GET have been found to be unhelpful and/or harmful, and
that if they force detention and treatment on him as a psych patient and he deteriorates further or dies as a result, they will be legally liable for the iatrogenic harm they’ve caused him, and cannot plead ignorance of these possible consequences.