Where is the deception in M.E.?

Strong stuff but I have to say that mental illness can be just as disabling and opportunity limiting....

As animals living in a dangerous world, humans have to 'get it right' a lot
of the time in order to survive. Misjudgments can lead to various dangers
for people.

Given this imperative it is not surprising that humans are very sensitive to
being deceived. When people are deceived they 'get it wrong' and are put in
danger.

When M.E. psychologizers (hereafter 'Meps') use terms like 'secondary
gains', 'undeserving sick', people with M.E. (hereafter PWME) might feel
they are being accused of deception. When Meps use terms like 'illness
beliefs', 'scanning', 'hysteria', they are implying that PWME are deceiving
themselves and are therefore (albeit unintentionally) deceiving other
people.

The common factor is that Meps perceive some kind of deception. Detection
and denouncement of this perceived deception has many rewards and generates
reasons to maintain this assertion. Meps may achieve a sense of superiority;
the deceiver has been outsmarted. They may gain a sense of security; they
are safe from being deceived. There is the secondary gain of gratitude from
those they alert to the supposed deception. When people can convince others
that a particular person or persons are deceiving them they may gain control
of the energy generated by the inbuilt fear of being deceived, the fear of
getting it wrong.

The satisfaction of denouncing a deception is something that most people can
identify with. In the children's story The Emperor's New Clothes
(http://en.wikipedia.org/wiki/The_Emperor's_New_Clothes), I doubt that
anyone identifies with the suckers in the crowd, they are with the child
that sees clearly how things really are.

The fear of getting it wrong is a phenomenon that can be exploited by
convincing people that a deceit exists, i.e. accusing Jews in Nazi Germany
of secret activities to undermine society or asserting that Saddam Hussein
had control of weapons of mass destruction prior to the invasion of Iraq.

False accusations of deception can give power to act in certain ways that
might not otherwise be condoned and to manipulate mass-attitudes and
behavior. Many PWME and those that know them are well aware of the abuse and
neglect to which they have been subjected. This treatment of severely ill
people would normally be unthinkable in a civilized society. The implication
that PWME are self-decieved or decieving has fostered intolerance towards
them in societies that are generally noted for their humane treatment of the
sick.

When false accusations are disseminated and widely accepted a strange
phenomenon can occur. When no weapons of mass destruction were found in
Iraq neither President Bush nor Prime Minister Blair resigned nor were
forced out of office. Both misled their countries into embarking on an
illegal invasion but both survived the exposure of their false premise for
war.

Assertions about WMD's created anxiety which may have led people to accept
their existence in the absence of evidence. In this way many people had
unwittingly accepted a share in the falsity. This may have resulted in a
reduced impetus to displace the misguiding leaders because some people
protected their egos and sense of security. People were ready to grasp at
the proffered notion that Saddam was an evil person and his regime had to go
(despite the fact that other countries with unfit rulers have not been
invaded). This justification which did not make the invasion legal,
nevertheless saved people from confronting the frightening prospect that
they had been misled by their leaders and they 'got it wrong'.

In some circumstances it is an easy thing to say, 'I was wrong', but in
certain situations such an admission can demand extraordinary courage and
humility because it carries with it a profound sense of danger. The degree
of danger is dependent on many factors which include the degree of
ego-identity enmeshed with the mistaken belief and the level of certainty
formerly espoused to others.

This means that people whose egos and personas are highly associated with
their opinions are less likely to change or modify their opinions according
to available information. Believing their opinions are 'right' could be an
imperative for them.

Some people (including myself) that have remained with the same GP for many
years may have noticed a gradual change in attitude towards a diagnosis of
M.E. This is made possible because many GP's, although frustrated by the
illness and sometimes by their patients, retained their open-mindedness and
never settled on a fixed opinion. Remaining flexible has enabled them to
accept new research findings and in some cases observe for themselves the
process of the disease in their patients.

Meps who voiced their opinions strongly are in a difficult position even
though they have succeeded in disseminating their opinions into wider
society. They cannot easily recant their opinions because of professional
pressures. They must now strive to maintain their position as best they can
or carefully reposition. Those that have to some degree colluded with their
opinions may provide support and remain reluctant to refute Meps theories
outright.

Asserting that CFS (a diagnosis that includes some PWME) is 'heterogeneous'
offers a useful way out for Meps and those that accept their theories. CFS
being 'heterogeneous' facilitates the possibility that some people diagnosed
with CFS are deluding themselves and have confused everyone. This may
create some justification for those powerful doctors that have forcefully
espoused the view that M.E. is psychological.

Other possible get-outs might include: rejecting Cartesian dualism;
misdiagnosis; patients can develop new, serious illnesses; CFS is real;
patients symptoms are real; etc. This type of wriggling and repositioning
will probably continue whilst research adds weight to the evidence of
physical disease in M.E.

I imagine it is a bitter irony for many people with M.E. that those that
implied they are deceiving themselves into thinking they are ill, must now
struggle to maintain their own illness beliefs about M.E.

Meps must ignore or devalue research that demonstrates physical
abnormalities in M.E. or strive to demonstrate that such abnormalities are
psychological in origin. Their activities may impede biophysical
investigations and they must justify this behavior. The position held by
some vociferous and active Meps is precarious, being wrong would not only
undermine them professionally and in some cases financially; but also poses
a threat to their ego identity.

Until Meps are at least theoretically able to accept the role of deluded
psychologizer they will never be able to consider their position honestly.
Their activities will probably continue to add to the considerable suffering
of PWME and impede the research that might offer real solutions. They may
also continue to influence policy makers, the media, and the medical
professions with their opinions.

Attempting to analyze any type of controversy always takes me to
considerations of what different opinions mean to me personally. If I do
not know how I prefer one side of an argument over another the temptation
may be to adopt those opinions that are most comfortable or profitable to
me. Many years ago a doctor was appalled by the way fellow physicians
treated PWME as mentally ill, and asked; 'what if you are wrong?'

The theoretical gains for a PWME in accepting a psychological interpretation
for their symptoms has led many, like myself, to attempt just that way of
thinking. Their answer to the question above might be; 'I might get a life
back, regain some social dignity, have a career and a family, go on holidays
and not be in pain all the time or worried about money and the future.'

These theoretical potential gains mean that PWME can readily weigh a
psychological interpretation in their considerations and many like myself
have tried this. I've tried every imaginable approach to GET and not just
over weeks or months but years. Not only did I have months of high quality
counseling but I am a qualified counselor with a research MA in counseling
and psychotherapy.

All this effort resulted in precisely zero benefit to my health but did
cause severe exacerbations and several relapses. It was not until I began
antibiotic therapy for the infections that were finally discovered that I
got some improvement in the disabling symptoms I'd lived with for 17 years.

As for Meps, I doubt that some can even begin to contemplate the question
posed above. For them the cost of being wrong is too high for them to
examine this honestly. They must keep in focus that M.E. is all the fault of
the patient's weak mind and self-deception. They must keep their focus of
attention narrow to avoid being disturbed by new scientific evidence. They
must shut out the shattered lives of patients that lie in the wake of their
theories.

Above all, they must obscure their own motives.

Peter Kemp

Fibromyalgia and IBS flare up

Irritible bowel syndrome and fibromyalgia often go hand in hand.

My IBS was diagnosed almost 30 years ago, I finally got it under some kind of control just over 10 years ago after a perod when my entire digestive tract was inflamed mouth to anus.

At that time I was being sick every day with atrocious diahreha, various investigations - colonoscopy, gastroscopy, barium push through etc showed the inflammation and the fastest push through my consultant had ever seen! It became patently obvious at this time that anything with dairy products in made the sickness and diarhea 100 times worst.

I took some advice and eliminated dairy as much as is possible, the black circles round my eyes cleared within weeks! The digestive problems took longer but settled to an almost tolerable level for a few years with a fair few flare ups along the way. I take mebeverine daily plus lopermide when needed although I try to avoid the later if I dont need to go out of the house as bunging my bowels up knocks them further out of control in the long run.

Now, however, despite being dairy free, eating no processed foods etc my bowel symptoms are out of control with diet and meds seemingly ineffective. Basically I never know if I am going to wake up and have a day of feeling I need to go and open my bowels and only pass mini pellets with a lot of effort or suffer explosive diarhea - either way I have pain and disruption to any sort of normal life....

So today I start purging for a colonoscopy tomorrow and it is not much fun at all. A very limited diet was started yesterday and 4 senna taken 10pm, which have not worked yet but yesterday was a "pellet" day. My last solida are allowed at 1pm, 24 hours before my examination, and at 2pm I take the first picolax which works something like putting caustic soda and boiling water down a blocked drain, boy does that stuff make you go! A second picolax later should keep me on the bog most of the day so I hope I won't have time or energy to feel hungry. Clear fluids only until 11am Friday then off to hospital for an enema, they sure make sure you are clean inside, and the colonoscopy..

Results to follow

Against CBT and GET

November 2008: ME Free For All: "It looks as though Dr Martin Edwards has read the NICE (National Institute for Health and Clinical Excellence) guidelines for the treatment of M.E. (Myalgic Encephalomyelitis), which it bundles indiscriminately with Chronic Fatigue Syndrome, since he seems to prefer the latter term and recommends the two treatments Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) for it (Ask the Doc: Tired excuse, Chat, 6 November 2008).

I wonder if he is aware that the latest research, conducted by the very same people who advocate these treatments and/or administer them, both in this country and elsewhere (including Belgium, USA and Japan), consistently show that CBT has no lasting benefit, without relapse, for people with M.E. and a majority are worse after graded exercise, some irrecoverably so...

A key symptom of ME is post exertional malaise, i.e. disproportionate fatigue and exacerbation of symptoms after minor exertion, that can occur up to 72 hours later and can last a long time.

Graded Exercise Therapy (GET) was found to be positively harmful in over 30% of ME patients in a recent survey by Action for ME. Some patients have ended up in a wheelchair or bedbound since they tried it - what drug with these results would be recommended without a warning"