There is a Danish proverb -
He who is afraid of asking is
ashamed of learning
With healthcare where better to learn than from patients?
As with much of the research that is and has been funded,
under the subterfuge of research into Myalgic Encephalomyelitis (ME), it seems
a persistent theme of those entrusted with the future of people with ME and
their families that they do not listen to patients.
Dr Clare Gerada, former chair of the Royal College of GPs,
said at the last IiME international conference in 2013 that GPs know very
little about ME.
She also said that patients know their illness better than
doctors.
Common sense - something that is obvious one would think.
The obvious.
It would seem obvious that the UK Medical Research Council
should not spend more on psychological research after the farcical and flawed
PACE trial squandered £5 million and showed no objective improvements in patient
outcomes and is clouded in controversy about methods used and claims being made
[1]. Yet it goes on.
It would seem obvious and self-evident that children should
not be coerced into graded exercise when they are ill and unable to attend
school. Yet the SMILE study is funded -funding given to the vice-chair of the
MRC/SMC collaborative of charities and organisations. in our opinion an
appalling and dangerous waste of funding to flawed theories. [2]
It would seem obvious that after being taken to a Judicial
Review, by patients, that an organisation such as the UK National Institute for
Health and Care Excellence (NICE) would show some humility toward a patient
community that for a generation has been denied proper treatment, proper
research or any form of respect. Yet NICE have again not listened and ignored
calls for a review of their previously unacceptable guidelines for ME. [3]
KARINA HANSEN
Karina Hansen is 24 years old who has been seriously ill for
some years and was cared for by her parents in Jylland, Denmark. On 12 February
2013 she was removed by force, under
police supervision, by doctors and the local authority who seemingly gained
access to Karina's residence without prior notice. Later, the parents informed
that Karina had been admitted to Hammel Neuro Centre for assessment, treatment
and rehabilitation. Karina's lawyer has now taken over the case. [4]
It would seem obvious that locking up a young adult,
stopping her family from regularly seeing her, forcing psychiatric theories and
practices on her would all qualify for an investigation into human rights.
Yet one year on from this situation Karina Hansen is still
locked up, with sparse information about her condition, with rumours that a UK
psychiatrist is "advising" the Danish psychiatrists on treatment, and
uncertainty about her condition or her prognosis.
We cannot be sure what is the current status of Karina
Hansen's health.
Despite Danish national ME organisations attempting to
assist no help seems to have been accepted by those currently treating Karina
and no information seems to be forthcoming - either from the Hammel Neurocenter
or from the Danish Health Ministry.
Yet one thing is clear - patients are not being listened to.
And lessons are not learnt from past misfortunes.
This must change.
In an attempt to break this impasse IiME last year invited
the physicians at the Hammel Neurocenter to the 8th Invest in ME International
ME Conference. We followed up this invitation by contacting the Danish health
minister Ms Astrid Krag and inviting her. [5]
We received no reply.
"He who is afraid of asking is ashamed of
learning"
In order to support a fresh attempt at helping Karina Hansen
the charity has offered the new minister of health, Nick Hækkerup, an
invitation to meet with clinicians and researchers at the BRMEC4 research
colloquium [6] and IIMEC9 [7] events in London in May.
We have sent the invitation also to the physicians at the
Hammel Neurocenter, again. IiME have offered to arrange confidential meetings
with ME experts with a view to helping get the best attention for Karina
Hansen. And we have offered a place at the research colloquium and at the
conference.
We await a reply.
We know from too many stories of how severely affected ME
patients suffer in silence and are often misunderstood by social workers, by
doctors and by the healthcare system. [8]
We have written in the past that we feel it is impossible to
marry the views of those who believe in the deconditioning/behavioural and
wrong illness belief model of ME with those from the biomedical side.
Yet what we can agree on is that we need to exhaust all possibilities
when a patient such as Karina is in such an awful situation.
This charity has never bothered with egos or status - what
matters is progress.
But we recognise that to accept this invitation will be
difficult for anyone whose professional authority is questioned. We understand
this.
Yet it takes a greater degree of courage to accept an
invitation such as this - to accept that learning never stops.
This invitation will cost everyone very little - yet it
might help save a life.
Our letter to the Danish Health Minister is here -
There is another Danish proverb -
It is too late to learn to swim
when the water is up to your lips
Status Update 7th March 2014
No reply from the Danish Health Ministry, the Danish Health
Minister or from Hammel Neurocenter.
Related Links
Further Reading
Support ME Awareness - Invest in ME
Although now dead, the Cholesterolosaurus will march on
By Dr Malcolm Kendrick
A meta-analysis including 530,525 people, partly funded by the British Heart Foundation, and published in the Annals of Internal Medicine has just come to this conclusion:
Conclusion: Current evidence does not clearly support cardiovascular guidelines that encourage high consumption of polyunsaturated fatty acids and low consumption of total saturated fats.
To read the full article, click here.
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