ME - The New Plague 2
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RECLAIMING THE PATIENT'S VOICE
STRIPEYSOCKS BLOG (not part of the book!)
Blog
97% : A SIMPLE EXPLANATION?
| Posted on March 29, 2015 at 7:01 PM |
 97%
: A SIMPLE EXPLANATION? Sometimes there is the simplest
of explanations when an announcement doesn't make sense. It's like a
fault in a garment; once someone points it out, you wonder how you
missed it. And after that you see it all the time! I
have been asked about this proposed figure of 97% recovery from ME in
young people, which has been doing the rounds after being aired in
the media. Initially of course, I directed people to my blogpost WHAT
DO WE KNOW ABOUT SEVERE ME? because in it I had discussed recovery
rates, and what might or might not be meant by 'recovery'. I gave
quotes from reputable authorities and pointed out that judging
recovery means defining what we mean by the word. It's important to
put the 'recovery' narrative into perspective. But
there other issues than merely defining our terms. One of them is
this: who is claiming that 97% of young people recover? What are
their sources? In my experience, it's paediatricians and other
healthcare workers who deal with young people. I
am reminded of an occasion when I attended a meeting in connection
with the setting up of a clinic. I believe the term CFS was being
used, but it may have been CFS/ME. In the general discussion, a
paediatrician stated that children did not suffer beyond the age of
16. He was quite confident. What was the flaw in his claim? I
looked at him: “But as a paediatrician you don't
see anyone
over the age of 16,” I pointed out. “So how would you know?”
And there you have it. A
glaring
flaw in the 97% claim. I
had to explain to this paediatrician that many relapses occur in
young people who have, indeed, become much stronger, but who are not
cautioned for the future. They are not advised to rein in if they
notice symptoms returning. They may burn the candle at both ends.
Believing it's all in the past, they study, shop, socialise, join
clubs, deal with all the general tasks of life, till suddenly they
find themselves back at home in the care of their parents. Students
have had to take a year out from university, or even to leave
altogether and consider other ways of studying. It's a horrible
shock, it's a blow to their self-esteem, and it's tragic that they
weren't given proper advice to begin with. It
has been noted that people generally adjust their idea of what is
'normal' after a long period of illness. As they improve, many
youngsters develop a good sense of what they can manage, and are
realistic about it; they adjust their lives to the new 'normal'. If
asked, they may say they are better, they may appear 'better', but as
with 'recovery', that word needs defining so we know what we're
talking about. No-one, particularly the adults around them, likes to
think that any of these 'recovered' young people might still need to
pace themselves. They naturally want to be off having a good time and
living life to the full after what tend to be called the 'lost'
years. It doesn't have to be considered a great drama to advise them
to take a little care if they feel rough, as we all do at times. They
will need to test their boundaries, and may make mistakes, needing
friends and family to help them pick up the pieces. But that is life.
We all have to work with the cards we are dealt. We are all different
and there is no absolute norm. There are also other factors to
consider with regard to recovery figures. I
was giving a talk to home tutors and one told the group that a
student had asked what would happen if she wasn't recovered enough to
take her exams. She had 'encouraged' this student by saying, “Don't
worry, you will be.” It was clearly the tutor who found the
potential for limitations and disabilities too terrible to
contemplate, not the student, who had asked for information. By
refusing to engage with the student's question, the tutor unwittingly
cut off all discussion about adjustments that can be made for sick or
disabled students to take an exam. This is an illustration of how
important the attitude of professionals is. What
about the issue of pride? Always considered a sin, in biblical terms. In the Countess of Mar's recent
speech at the Royal Society of Medicine, she noted the difficulty
that professionals have in adjusting their beliefs:
Frantz Fanon, the
French psychiatrist, philosopher and revolutionary from the middle of
the last century wrote: “Sometimes people hold a core belief that
is very strong. When they are presented with evidence that works
against that belief, the new evidence cannot be accepted. It
would create a feeling that is extremely uncomfortable, called
cognitive dissonance. And because it is so
important to protect that core belief, they will rationalise, ignore
and even deny anything that doesn’t fit that core belief.” I
think of it as the Galileo effect. Clearly the sun goes round the
earth. Whoops. Pride comes before a fall. Are
we still seeing the Galileo effect in the realm of medicine? The more
medical professionals who buy into an idea, the more that idea
becomes accepted truth. Are we seeing the belief that the child
must have recovered
from the original illness, and that it couldn't possibly be lasting
so long, confuse recovery statistics? If the reality doesn't match
expectations, if parents explain that their child is still ill, or
becoming worse, this can be put down to another
condition, perhaps a psychiatric one. Family after family report this
happening to them. The very idea that the child's so-called 'CFS'
might still be active is pooh poohed. Does that skew recovery
statistics? Another
belief appears to be that The Treatment must
work, therefore The Treatment does work. What happens when it
doesn't? There are many cases where parents are incorrectly blamed
for the child's condition. The fallout of that affects the whole
family. Consider this, from FALSE ALLEGATIONS OF CHILD ABUSE IN CASES
OF CHILDHOOD ME published by the peer reviewed academic journal
Argument and Critique:
“a bias would appear to have been introduced into the claimed
recovery rates from the management regime of the professional’s
choice, whereby blame for treatment ineffectiveness or failure is
shifted onto the children and their families.” Finally,
there is the whole 'chronic fatigue' umbrella. Whilst young people
are generally resilient and the tendency is for their bodies to fight hard against illness, who, out of those who appear to be
genuinely 'recovered', had classic ME in the first place? Jane Colby STRIPEYSOCKS BLOG methenewplague.net |
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