Alice Burchfield (2009) a participant in the recent FINE
trial, was scathing that the data used about her was
misleading; that the trial totally disregarded “ ME as a
real illness”; that the program expected her to live a
strict pacing regime, yet undergo 3 hour long sessions with
the therapists ; and that she crashed after the last session
and ended up worse than when she began; that the therapists
had “selective hearing” and were “critical” of her and that
the whole thing was unethical – presenting the
“deconditioning” theory of ME as fact. This is a shocking
way to perform a supposedly serious study on ME.
The FINE trail has so predictably and so clearly failed .
Before the trail began, exsting research warned that
patients would be made worse by it and that the gains of CBT
and GET were minimal (Kinlon 2009) : exactly the conclusion
the FINE trial itself has now reached – at a cost of over
one million pounds. As Margaret Williams (2009) stated :
There can be no doubt that, for patients with ME/CFS as
distinct from those suffering from chronic “fatigue”,
neither CBT nor GET is effective, otherwise everyone would
by now be cured.”
I am a Registered Nurse and I am affronted by what has been
presented as good nursing practice and purported to be a
treatment for people with ME.
Personally I have cared for my wife, who has very severe ME,
for almost 17 years now. I cannot begin to describe the
horror and the pain and the sheer physical daily torment she
experiences.
The FINE trial considered itself suitable to challenge the
supposedly “dysfunctional illness beliefs” of “severely
ill” patients, like my wife, on the basis of a single report
in the scientific literature of two wheelchair bound
patients, who had dramatic improvements in health following
a “ pragmatic rehabilitation” regime. “Pragmatic” meaning
that treatment is given in people’s own homes , preceded
by “qualitative interviews” to explore “patient views on
illness causation, beliefs about chronic fatigue,
expectations of intervention, and previous experience of
treatment and doctor-patient relationships”.
The preposterous thinking behind FINE, was that patients
would begin to understand their symptoms and, jointly with
the nurse, agree a programme of rehabilitation.Never mind
that ME is a WHO classified neurological disease with
devastating multi-system dysfunction and that no treatment
has been elicited to aid patient recovery first. In what
other disease would rehabilitation be offered as front line
treatment without first testing for and treating the illness
itself ?
The 25% Severe ME group and the research charity, ME
Research called, way back in 2004, for each severely-ill
person on the FINE trial to be given a comprehensive medical
assessment to identify physical symptoms and signs. They
asked whether or not autonomic disturbances, seizures, frank
muscle weakness, neuroendocrine disturbances (like sweating
episodes), recurrent flu-like symptoms would be recorded
over the course of the trial ? They also asked would
symptoms like musculoskeletal pain, neurocognitive problems
and sleep dysfunction be comprehensively assessed?
Critically they asked : will patients receive treatment for
any of this? Sadly this did not happen. Invaluable data has
therefore been lost.
What a much better use of the wasted £1, 147 000 that would
have been !! The question must also be asked how mu time and
energy have genuine ME sufferers wasted and how many lives
have been made worse and subjected to unnecessary suffering
and abuse ?
The tactic of the seemingly all-powerful psychiatric lobby
in the UK , whose influence over the MRC seems absolute,
is to : ignore neurological ME; to change its name to "CFS",
which they consider primarily to be a problem of false
perception,and then to reclassify “CFS/ME” as a somatoform
disorder (Williams 2009) .
What no one saw coming, though, was this announcement of
failure , so little trust does the ME Community have in the
MRC .
Not surprising given the serious problems highlighted in
the House of Commons Select Committee on Science and
Technology ( HC 132) , which lambasted the MRC for wasting
funds and misguided strategies for research. (Hooper 2010).
Also not surprising given the MRC’s total failure to engage
with the vast body of significant biomedical evidence about
the nature of ME/CFS contained in more that 4,000 published,
peer-reviewed research papers, the misleading and
contradictory content of the FINE/PACE Trial manuals
demonstrating the apparent coercion, and exploitation of
patients and the seriously flawed and inadequate science
that underpins the Trials as outlined in detail in Professor
Hooper’s 442 page report Magical Medicine .(Hooper 2010)
The failed FINE trial announcement brings into shocking
clarity the dreadful misrepresentation of ME as a mental
heakth disorder. The FINE trial has so clearly failed to
achieve anything except waste valuable time and precious
funding .
It is now time that the psychosocial model be discredited,
that the psychiatric involvement and interpretation of ME be
rejected and a new era of genuine sciebtific research into
the biomedical causes underpinning this desolatating
neuorological disease be given centre stage ?
Surely now the current practices of the ME clinics around
the UK will be overhauled and CBT and GET finally removed
to the annals of history , no longer to damage deny and
negate the truly dredful physical suffering of tens of
thousands of ME patients throughout the UK.
This is medical neglect at its worse; it is time to stop.
Rapid Response:
Preposterous Thinking
Alice Burchfield (2009) a participant in the recent FINE
trial, was scathing that the data used about her was
misleading; that the trial totally disregarded “ ME as a
real illness”; that the program expected her to live a
strict pacing regime, yet undergo 3 hour long sessions with
the therapists ; and that she crashed after the last session
and ended up worse than when she began; that the therapists
had “selective hearing” and were “critical” of her and that
the whole thing was unethical – presenting the
“deconditioning” theory of ME as fact. This is a shocking
way to perform a supposedly serious study on ME.
The FINE trail has so predictably and so clearly failed .
Before the trail began, exsting research warned that
patients would be made worse by it and that the gains of CBT
and GET were minimal (Kinlon 2009) : exactly the conclusion
the FINE trial itself has now reached – at a cost of over
one million pounds. As Margaret Williams (2009) stated :
There can be no doubt that, for patients with ME/CFS as
distinct from those suffering from chronic “fatigue”,
neither CBT nor GET is effective, otherwise everyone would
by now be cured.”
I am a Registered Nurse and I am affronted by what has been
presented as good nursing practice and purported to be a
treatment for people with ME.
Personally I have cared for my wife, who has very severe ME,
for almost 17 years now. I cannot begin to describe the
horror and the pain and the sheer physical daily torment she
experiences.
The FINE trial considered itself suitable to challenge the
supposedly “dysfunctional illness beliefs” of “severely
ill” patients, like my wife, on the basis of a single report
in the scientific literature of two wheelchair bound
patients, who had dramatic improvements in health following
a “ pragmatic rehabilitation” regime. “Pragmatic” meaning
that treatment is given in people’s own homes , preceded
by “qualitative interviews” to explore “patient views on
illness causation, beliefs about chronic fatigue,
expectations of intervention, and previous experience of
treatment and doctor-patient relationships”.
The preposterous thinking behind FINE, was that patients
would begin to understand their symptoms and, jointly with
the nurse, agree a programme of rehabilitation.Never mind
that ME is a WHO classified neurological disease with
devastating multi-system dysfunction and that no treatment
has been elicited to aid patient recovery first. In what
other disease would rehabilitation be offered as front line
treatment without first testing for and treating the illness
itself ?
The 25% Severe ME group and the research charity, ME
Research called, way back in 2004, for each severely-ill
person on the FINE trial to be given a comprehensive medical
assessment to identify physical symptoms and signs. They
asked whether or not autonomic disturbances, seizures, frank
muscle weakness, neuroendocrine disturbances (like sweating
episodes), recurrent flu-like symptoms would be recorded
over the course of the trial ? They also asked would
symptoms like musculoskeletal pain, neurocognitive problems
and sleep dysfunction be comprehensively assessed?
Critically they asked : will patients receive treatment for
any of this? Sadly this did not happen. Invaluable data has
therefore been lost.
What a much better use of the wasted £1, 147 000 that would
have been !! The question must also be asked how mu time and
energy have genuine ME sufferers wasted and how many lives
have been made worse and subjected to unnecessary suffering
and abuse ?
The tactic of the seemingly all-powerful psychiatric lobby
in the UK , whose influence over the MRC seems absolute,
is to : ignore neurological ME; to change its name to "CFS",
which they consider primarily to be a problem of false
perception,and then to reclassify “CFS/ME” as a somatoform
disorder (Williams 2009) .
What no one saw coming, though, was this announcement of
failure , so little trust does the ME Community have in the
MRC .
Not surprising given the serious problems highlighted in
the House of Commons Select Committee on Science and
Technology ( HC 132) , which lambasted the MRC for wasting
funds and misguided strategies for research. (Hooper 2010).
Also not surprising given the MRC’s total failure to engage
with the vast body of significant biomedical evidence about
the nature of ME/CFS contained in more that 4,000 published,
peer-reviewed research papers, the misleading and
contradictory content of the FINE/PACE Trial manuals
demonstrating the apparent coercion, and exploitation of
patients and the seriously flawed and inadequate science
that underpins the Trials as outlined in detail in Professor
Hooper’s 442 page report Magical Medicine .(Hooper 2010)
The failed FINE trial announcement brings into shocking
clarity the dreadful misrepresentation of ME as a mental
heakth disorder. The FINE trial has so clearly failed to
achieve anything except waste valuable time and precious
funding .
It is now time that the psychosocial model be discredited,
that the psychiatric involvement and interpretation of ME be
rejected and a new era of genuine sciebtific research into
the biomedical causes underpinning this desolatating
neuorological disease be given centre stage ?
Surely now the current practices of the ME clinics around
the UK will be overhauled and CBT and GET finally removed
to the annals of history , no longer to damage deny and
negate the truly dredful physical suffering of tens of
thousands of ME patients throughout the UK.
This is medical neglect at its worse; it is time to stop.
References
Bell D (2009) Daily News online http://bit.ly/4KofDR
Burchfield A (2009) From Alice Birchfield
http://www.investinme.org/Article-015A%20FINE%20Trials-
Alice.htm
Hooper M (2010) LETTER to Dr Morven Roberts, Clinical Trials
Manager, UK MEDICAL RESEARCH
COUNCIL http://www.investinme.org/Article400%20Magical%20Med
icine%20Letter%20to%20Roberts%20MRC.htm
Hooper M Williams M(2010) Magical Medicine : How to Make a
disease
disappear http://www.investinme.org/Article400%20Magical%20M
edicine.htm
Kinlon T(2009) Why is the 11-item bimodal Chalder Fatigue
Scale being used as a primary outcome measure?
http : //www.biomedcentral.com/1741-7015/4/9/comments#298590
Kinlon T (2009) Further comments on the outcome measures
being used and suggestions for other outcome measures that
could be useful in such trials
http://www.biomedcentral.com/1741-7015/4/9/comments#298590
ME Research (2004) Severely Overlooked by
Science http://www.meresearch.org.uk/information/publication
s/severe1.html
Williams M (2009) Can the MRC PACE Trial be justified?
www.meactionuk.org.uk/Can-the-MRC-PACE-Trial-be-
justified.htm
Competing interests:
None declared
Competing interests: No competing interests