Nancy Blake, ME/CVS-patiŽnte, auteur van A Beginner's Guide to ME/CFS en co-auteur van
Ramsay's Disease: Myalgic Encephalomyelitis (ME) and the Unfortunate Creation of 'CFS',
windt er in haar gastrubriek in NHS Managers, een tijdschrift voor NHS personeel, geen doekjes om:
rust is van het allergrootste belang voor ME/CVS-patiŽnten (zeker in het beginstadium van de ziekte)
en de (bio)psychosociale verklaringsmodel, waarbij de patiŽnt de schuld krijgt als de "wonder-
therapie" (CBT/GET) niet werkt, is mede gebaseerd op "dysfunctionele gedachten" van psycholeuten.
A Radical Care Pathway for ME/CFS
2013, October 3th
Much maligned and misunderstood,
ME gets a radical makeover in this exclusive editorial for nhsManagers.network.
But is this pathway really so radical?
Perhaps only if you are a healthcare professional!
Based on the premise that
if an illness is defined by the fact that exercise makes it worse,
maybe that should be a starting point for dealing with it!
[T]he patient's behaviour in the early stages determines
either a path towards recovery or
a path towards extreme and long lasting states of incapacity.
The basic prescription should be to go home and go to bed;
just doing the minimum exercise necessary to prevent DVT
(getting up to go to the loo might be enough!).
The expensive centres which have been set up,
requiring patients to attend in order to engage in extra exertion
(just getting to a hospital appointment is enough to wipe out an ME/CFS patient for days)
should be replaced by these less expensive domiciliary services.
Apart from encouragement to keep on resting, and
encouragement to family members to appreciate that this is needed,
the patient should be left alone, allowed plenty of time to get better.
Along with facilities for rest breaks and
perhaps being able to do some work from home,
this gives the patient the best chance of
returning to their education, job, or professional activities.
Which, contrary to the 'false illness beliefs' of some psychiatrists,
is what patients are desperate to do.
Doctors brave enough to use this 'light touch' approach
would be rewarded by positive relations with their patients, and
the prospect of seeing them getting better instead of getting worse.
But it would take real courage to challenge the cultural myths
that 'fighting' illness is the only way to go,
that exercise is good for absolutely everything, and
that people who have ME/CFS don't want to get better, and
must be persuaded or coerced into activity.
The current psychiatric model
has no way of acknowledging treatment failure Ė
failure can always be blamed on the patient.
No wonder there is so much hostility.
Nancy Blake is author of 'A Beginner's Guide to CFS/ME',
and co-author, with Les Simpson, Ph.D. of 'Ramsay's Disease Ė ME'.
She is currently undertaking a Ph.D. project at Lancaster University
on the conflicting paradigms of ME/CFS.
Met dank aan dr. Speedy (http://niceguidelines.blogspot.nl).