Dr Charles Shepherd
Hon Medical Adviser, ME Association
MEA website: http://www.meassociation.org.uk
1 Firstly, I'm obviously going to be critical about psychiatrists so I'd like to point out that:
I've worked in hospital psychiatry - and made use of behavioural therapies
Psychiatric illness is real and horrible - so there's no intention of belittling psychiatric illness
The argument with the psychiatrists is about the way in which some of them are trying to turn an illness classified as essentially neurological by WHO (in ICD10; G93:3) into a psychosomatic illness.
2 The basis for CBT:
This is essentially a psychological treatment for mental health conditions - depression, obsessive disorders, phobias etc.
CBT is based on the idea that these illnesses are largely maintained by what are called abnormal/negative/unhelpful illness thoughts (the cognitive part) which lead to abnormal/negative/unhelpful behaviour (the behaviour part).
In other words there is no underlying organic disease process. The illness is a essentially a behavioural problem
3 CBT treats cancer and other physical illnesses - this is being disingenuous
CBT is sometimes used as part of the management of cancer, MS etc - normally for people who are having difficulty coping with their illness.
It is not a primary form of treatment for serious long term medical conditions.
If a patient with cancer went to a cancer specialist and was just offered CBT as the primary form of treatment they would be horrified
4 The evidence for CBT in ME/CFS
Overall, the evidence is inconsistent, uncertain and weak.
Some research, often in highly selected patients with research defined CFS, and often carried out by CBT enthusiasts in psychiatric referral units, has indicated some people with CFS gain some benefit.
But other research, including the most recent paper on group CBT, has found no real benefit.
Patient evidence that was submitted to Chief Medical Officer's report found that:
67% reported no change; 26% felt worse; only 7 % felt better.
5 The NICE recommendations regarding CBT and GET are seriously flawed
The guidance states that everyone (ie around 200,000 people) with mild or moderate ME/CFS should be offered a course (ie 12 to 16 sessions) of CBT or GET by a properly trained therapist.
The cost of a session, including training the therapist, initial assessment, admin etc, is going to be around £100 - making a total cost of somewhere around £200 million.
Where is this money going to come from when existing ME/CFS services are being closed or are under threat, and when the government has indicated that there is no money available for new ME/CFS services.
And where are all the extra CBT and GET therapists going to come from?
Lord Layard, government economist, wants to create an army of newly trained nurses, psychologists and social workers to fill this gap. These professionals all play a useful role but they cannot take over the basic management of a neurological illness.
6 Mind - Body is a two way street
Nobody would dispute that the mind and body interact and that people with serious long term illnesses can go on experience depression and emotional distress.
If these occur in ME/CFS, which they undoubtedly can, then they need to be addressed - but they are not the underlying cause of the illness.
BIOPSYCHOSOCIAL is a meaningless fence-sitting expression that ought to be drowned. All illnesses (even the common cold or a broken leg) can have physical, social, and psychological components.
There are times when doctors have to come off the fence and decide whether an illness is basically psychological or physical.
7 What do people with ME/CFS really want?
Physician led centres providing multidisciplinary care and advice
Advice on all aspects of management - activity in particular - depending on stage and severity
Symptom relief: in particular pain, sleep disturbance, autonomic dysfunction
Help with other key aspects: education, work, benefits
8 ME and CFS
The medical profession renamed and redefined ME in the late 1980s to create a wide spectrum of patients with differing clinical presentations and pathological explanations.
At one end of the CFS spectrum are those with chronic fatigue that is indistinguishable from a psychiatric illness. At the other end are those with no psychopathology.
It's rather likesaying that everyone with arthritis - osteoarthritis, infective, lupus, psoriatic, rheumatoid etc - has the same symptoms and underlying pathology and so can be treated in the same way. They don't and they can't.
No wonder we are in this awful mess.
--
Dr. Mary Schweitzer
Dr. White is disingenuous in his claim that he accepts both biological and
psychological explanations for the disease "CFS". Disingenuous in that he
ignores almost all of the biological evidence except that which fits his
contention that behavioral conditioning (cognitive behavior therapy) together
with exercise can "cure" CFS.
He states that having EBV is a five-fold risk factor in getting CFS - yet all
of his work to date has demonstrated a belief that the virus itself has
RESOLVED by the time CFS sets in. Hence the symptoms associated with "CFS"
(depending on which definition you use) are not caused by the virus; it is
learned behaviors over the course of the virus that create the symptoms
associated with CFS. Cognitive behavior therapy cannot "cure" a virus; it
can only change behavior. If White believes these patients still have an
active, serious viral infection, how could he possibly propose "graded
exercise therapy"?
As a whole, proponents of the so-called "biopsychosocial" school of medicine
have taken no fewer than THREE good concepts and used them opportunistically
to do damage to patients, at the benefit of their own careers.
1 - The first is that concept of "bio-psycho-social" . Any thinking person would
agree that in disease states, the entire environment is important. Nursing school
teaches that. Let's say I have cancer. It would lead to a range of emotions
including despair. The degree to which society helps my family or laughs
at my baldheadedness, or even treats cancer as a death sentence, would surely
impact the degree to which I could get relief from my serious biological illness,
and how I felt about myself. That's how a concept with the label
bio-psycho-social should play out in real life. They have used it instead to
squelch all the existing research on the biological causation of this disease.
The concept of "somaticizing" in psychology has as its FIRST requirement that
there be no physiological cause for the symptom. I would suggest that probably
means there should not be the POSSIBILITY of a physiological cause for the symptom.
Because of that, the habit of these radical psychiatrists of shielding the reader from
peer-reviewed published research about the physical nature of the disease is deceptive
at best - fraud at worst. To disguise their philosophy under a name "bio-psycho-social"
that implies they are taking into account the biological evidence - when they are not
- is Orwellian new-speak of the worst order.
I have yet to see an article published on this subject that includes, for example,
Anthony Komaroff's survey of the biological literature from the Journal of American
Medicine in 2000. Surely such an omission implies a desire to keep information
from the reader which might dispose the reader to look unfavorably upon the
author's own thesis - which is a violation of the most basic rules of scientific
research.
2 - The second concept they butcher is the mind-body continuum.
People burdened with major mental illnesses such
as schizophrenia or manic depression have a biological basis to their illness,
although the illness presents itself as behavioral. So the original complaints
about mind-body dualism were intended to get equal treatment for patients with
serious mental illnesses - get them treated like anybody else with a physical
illness. Since these are lifelong illnesses just like diabetes, patients
with these illnesses fight for the right to life-long treatment when
most government and insurance programs limit the treatment to a fixed number of years.
To use THAT concept to DENY the physicality of an illness (and therefore not
only the biological remedies, but also the comfort that our society affords
patients with physical rather than psychiatric illnesses) and replace it with a
behavioral disorder is to completely reverse the purpose for which that debate
originally started.
3 - The THIRD concept they have butchered is the so-called "HPA Axis" damage in
patients with M.E./CFS-Fukuda. I have read a number of these articles, and that
evidence boils down to the old studies by Stephen Straus and Mark Demitrack that
showed that patients with CFS-Holmes had LOWER than average levels of cortisol.
That was a significant finding, because at the time both Straus and Demitrack
(at the U.S. NIH) were portraying "CFS" as a type of neurosis, or simply
depression. But patients with major mood disorders have HIGHER than average
levels of cortisol. So this evidence actually implied that whatever was wrong with
these patients, it was not primarily psychiatric.
Furthermore, the scholarly literature on the impact of stress on patients
emphasizes that patients under a lot of stress have HIGHER than average levels
of cortisol - just like patients with major mood disorders - and the opposite of
patients with CFS-Holmes and CFS-Fukuda in those studies.
At first, those who claimed psychiatric (oh, my bad - BEHAVIOURAL) causation in
CFS buried that information in their studies.
Then a new explanation surfaced. AHA! Here is the argument: at some point
earlier in their lives, these patients had SO much trauma and SO much stress
that they blew out their HPA system (so to speak) and that is the reason they
now have lower-than-average cortisol levels, which boils down to an
under-responsive nervous system rather than an over-responsive nervous system
(their original narrative) and now they can claim they have biological studies that prove their point. (and also ... hence, neurasthenia - a "weak" nervous system in the face
of "modern day stress.")
Now, nobody has found that, say Holocaust survivors have had higher-than-average rates of "CFS", or indeed that the adult victims of know child abuse have shown up
with higher-than-average rates of "CFS" - this is all theory, and it is all
retroactive. Example: Using a questionable data set, Bill Reeves at CDC has claimed that 40 percent the patients with ""CFS" had some type of
trauma in their past - but I have seen studies that claim the rate of traumatic
incidence in childhood is at least that high among normals. And to my knowledge
there was NEVER a study of the original cohort that proved this; Reeves used his
two-day hospital stay to draw this conclusion, and in that hospital stay only
SIX of the patients diagosed with CFS were part of the CFS cluster from the
original Wichita population study. That is just a sample of the type of
research we are talking about here - strained, tortuous, and self-fulfilling.
White himself refers to the increase of cytokines as a possible cause for
the symptom of "fatigue". Apparently it has not occurred to him that there may
be an immunological component to the illness because it is a disease primarily
characterized by immunological deficiencies - and as a result the patients are
beseiged with illnesses such as HHV-6A or coxsackie viruses. Conversely,
perhaps there is an increase of cytokines because the body is battling
an active infection for which there is, as yet, no accepted test.
Surely a patient experiencing an active infection is going to experience "fatigue" - if not utter exhaustion. In which case, that "fatigue" should be respected.
By repositioning evidence of viral causation or viral infestation as actually a
type of fake bodily response - as if the increase in cytokines was not a sign of
a physiological disease in the normal sense of the term - White again abuses
evidence that would predispose most readers towards a disease in the usual
sense of the term. He turns this evidence on its head to suggest that it actually
makes the brain behave inappropriately. (If the patient were a victim of a serious
viral onslaught , the sensation of fatigue would not be inappropriate.)
Then it becomes the job of the all-knowing physician to convince the patient
that he/she needs to change behaviors to get better (cognitive behaviour
therapy), followed by graded exercise therapy - which surely would be inappropriate
if the patient actually suffered from an ongoing, severe, viral infection.
When a scholar REVERSES ENGINES - that is, CHANGES THE THESIS TO FIT THE CONCLUSION, it is an egregious sin in research, and you better have a good
reason for doing it. Having conveniently forgotten their original thesis, they
have never explained how they so conveniently turned the thesis on its head to
continue to keep their conclusion.
So - when White claims to be battling Cartesian mind-body dualism, he is in fact
confirming it by denying the scientific evidence of PHYSICAL abnormalities in
this disease, while insisting on a SOLELY BEHAVIOURAL model of
treatment. "Cognitive behaviour therapy"- in case anybody has forgotten -
is a school of psychotherapy.
--
Judith Decker
I do not regret the self-knowledge I gained from those years of
psychological explorations and treatments. In fact, I appreciate them more
as each year passes. However, they did absolutely nothing to alleviate the
symptoms or reocurrences of my debilitating physical relapses.
...medical science has treated allergies in the same way it has treated ME/CFS. To
wit: They are neither glamorous nor money-makers, and are too frustrating
and time-consuming for most doctors. So, the patient is left to "heal
thyself."
The only treatment that succeeds in eliminating the pyschological symptoms
is the exact same treatment that eliminates the corresponding physical
symptoms, which is to acknowledge and accept "all" of the symptoms for what
they are, i.e. a relapse of ME/CFS; then stop all physical/mental
activities, go to bed, or rest, and devote each waking moment to healing the
"whole" self.
May I respectfully suggest that it would be better for all mental
health practitioners to follow their oath to "Do no harm," by honestly
admitting that they can neither cure, nor treat, that which they do not
understand.
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