Wessely Protest Report

[Guest guest]

It's all true, I didn't hear the actual lecture, but that has already

been posted.

The chief organiser did a fantastic job in starting this.

Sunny thoughts,

Wallace

PLEASE REPOST

From: gwsme4real@...

Report of London Protest against Simon Wessely on 25 Jan 2006 Date:

30-1-06

We had only learned of Wessely's public appearance a week before the

event, and as a small, hastily formed committee of sufferers of

chronic

illness and their relatives, we wondered at first if we could pull

off a

protest at such short notice.

Nevertheless, soon messages of support began to roll in from a wide

spectrum of groups - M.E./chronic fatigue syndrome patients

organisations such as internet group " MEActionUK " , " Invest in

ME " , " One

Click " , the Norfolk ME Support group, borough M.E.E.T. and many

others, as well as from Gulf war veterans and Lyme disease patients'

forums (Eurolyme, Lymeblog etc).

Dr Owen, Lyme Disease specialist of Cardiff in Wales, who has

published on borrelia as one possible cause of Gulf War illness, sent

the following message to the rally:

" anyone who considers that the poorly understood conditions you

refer to [ie Gulf War syndrome, M.E./CFS, Multiple Chemical

Sensitivity,

Lyme disease, fibromyalgia etc] are imaginary is ignoring a huge body

of

scientific and medical literature to the contrary and such a view

should

not in my opinion be given any serious consideration " .

One M.E. activist estimated that 100 people were intending to come

from

the ME community alone. We all felt buoyant.

Then, one day before the event, strange things started to happen.

Rumours began to spread on Tuesday evening (ie the eve of the protest)

that Wessely had cancelled his lecture.

Several people phoned Gresham College first thing in the morning, to

be

summarily told it was called off. The College stated that Wessely

himself had cancelled at the last minute, and that they did not know

why.

Many people, naturally assuming they were being told the truth,

immediately contacted their friends or posted to their internet groups

to let others know it was cancelled, so that ill people would not

make a

long journey for nothing.

Meanwhile, we had received other information indicating that Wessely

was

secretly going ahead. We told those who rang in that we would go ahead

with our protest no matter what happened. Sadly, by then the damage

had

been done. Most people now believed it was off, and so a much smaller

number of people made their way down to Gresham College, in the heart

of

central London, than originally expected.

However it has to be said that many of those who did come travelled

long

distances, despite being ill - from as far away as Somerset, Cheshire,

East Anglia and the Midlands.

One man attended on behalf of his sister, who lived in Australia. She

explained how her life had been ruined because of Wessely's influence,

which sadly is international in scope.

A more detailed account of Wessely's dirty tricks, in which Gresham

College collaborated, can be found at the following URL (scroll down

to

" Comments " section).

http://www.lymeblog.com/modules.php?name=News & file=article & sid=366

ME activist Suzy Chapman later confronted Wessely over his shenanigans

in an open letter: " Will the administrators of Gresham College and

Professor Wessely, himself, be explaining to the public and the press

why they were being told on Wednesday that this lecture had been

cancelled? Will the administrators be willing to confirm on whose

authority Gresham College reception were giving out this information,

throughout the day, while the chairs were being put out in readiness

for

this event? "

Wessely claimed he had received " intimidatory " emails, and had reason

to

believe he would be physically attacked. This, he said, was why he

considered not turning up, but he had changed his mind at the last

moment. Those of us who arrived early found the College gates wide

open,

with a notice advertising the lecture on the wall, even as the College

staff were telling people over the phone that the event was off.

Professor Wessely himself turned up early, with a boy of about 14,

presumably his son. It seemed odd that a man who claimed he felt so in

fear of his life that he had nearly cancelled his talk, should choose

to

bring a child with him. Odder still was the fact that the boy was

later

allowed to approach the " dangerous " protesters, on his own. He stood a

few feet from us, laughing softly to himself. No one responded.

On his arrival Wessely had been greeted with the sight of the first

few

protesters who had set up an assortment of placards emphasising that

M.E, Gulf

War syndrome and other chronic illnesses were real, and a large banner

that read " The True Story of Simon Wessely: Shattered Lives " . This was

inspired by the title of his lecture: " The True Story of the Gulf War

Syndrome " . Also on display were the personal stories of people whose

lives had been destroyed by Wessely's ideas. The stories were very

harrowing, and described years of suffering, financial hardship,

ridicule and abandonment by the NHS, family and friends as a result of

Wessely's theories.

Wessely tried to make a joke of it all, laughing and saying, " Is this

really all for me? " But when he was asked to read a board covered in

evidence from peer-reviewed medical literature of M.E as an organic

(as

opposed to psychological) condition, he quickly scurried off into the

building.

A police van was present throughout and an officer emerged to grill

the

protesters. Who were we? Why were we here? Did we intend to cause any

trouble? Did we have plans for future demonstrations? As the officer

spoke, protesters were bathed in the flash of police cameras. When the

officer warned us that anyone caught disrupting the Professor's

lecture

would be dealt with severely, one protester asked " You mean like that

old man at the Labour Party conference? " " Yes, " replied the officer,

stony-faced.

As six o'clock approached, people began to enter the building. The

only

way in was via the elaborately carved wrought-iron gate, which by now

sported a picture of a big yellow duck and the words " Wessely is a

quack " on it, as well as a printout of medical references detailing

the

organic nature of ME from Professor Hooper's recent submission to the

Gibson enquiry, and a Dept of Health letter to a Lyme patient in which

the government admitted that Lyme - a bacterial infection - was one of

the causes of ME.

Those who entered the grand 16th century building were given no

explanation by the College authorities as to why the public had been

told, a few hours earlier, that the event was off. They looked forward

to challenging Wessely with some pertinent questions.

But Wessely had yet another trick up his sleeve. The majority of those

who had turned up as a result of our call for a protest were herded

into

an " overspill " room where they could only follow events on a screen.

They had no way of participating or asking questions.

Wessely himself addressed people in the lavish main lecture hall of

the

centuries-old building, complete with portrait paintings and ornate

panelling.

About a third of the seats were reservation only (even though the

event

had been advertised as requiring no advance booking), and although a

few

of Wessely's opponents had been allowed to reserve seats, something

like

one third to a half of the main room was taken up by a party of what

appeared to be Sixth Form students, who made it absolutely plain they

had no interest in the either the lecture or the protest, but had been

made to attend. This prompted speculation that Wessely had drafted in

pupils from his son's school at the last minute to fill up the hall,

so

that the chronic illness sufferers, who might ask awkward questions,

would be forced to use the " overspill " room.

It was also noted that several seats in the main hall remained empty

throughout the lecture, yet no one from the " overspill " room was

allowed

to occupy them. Professor Malcolm Hooper, who has written extensively

on

the physical nature of the chronic illnesses, was in attendance, as

was

Diane Newman of the ME Association. Royal Air Force pilot

Willson

of the National Gulf War Veterans Association was present, but like

many

others, was not given the opportunity to ask questions.

Video and audio recordings of the lecture are available on the Gresham

College website at

http://www.gresham.ac.uk/event.asp?PageId=39 & EventId=448 with a

transcript promised soon.

However here is a summary, and comments on what was said.

Wessely was introduced by fellow psychiatrist from the Institute of

Psychiatry Raj Persaud. Persaud is in fact one of the eight Professors

who run Gresham College, and he mentioned that the IOP was conducting

a

series of lectures. He considered it momentous these two ancient

institutions (ie Gresham College and the IOP, which has its roots in

Bethlem Hospital) were now coming together in this way. He praised

Wessely whom, he described as an expert in the " overlap between

medicine

and psychiatry " .

After some whining about threats and intimidation, Wessely launched

into

a description of his studies on 1991 Gulf War veterans, which he

mentioned, had all been funded by the US. As an epidemiologist, he

believed it was necessary to study populations, as opposed to

intensively studying the illness in individuals. Therefore he had

chosen

what he described as a " random " selection of about 4000 Gulf War

veterans, said to represent about 10% of those involved.

But ill veterans wonder just how " random " Wessely's sample could be,

given that, for example, only one member of the National Gulf War

Veterans Association, which has approximately 2500 members, was ever

contacted by Wessely's team. Neither Major Lloyd, for

example,

nor RAF pilot Willson, who were among the very first sick

veterans to be assessed by the MoD's Medical Assessment Programme

(MAP)

were contacted.

The 4000 veterans who had been deployed to the Gulf were compared to

two

other populations - members of the Peacekeeping force sent to Bosnia

in

the mid-90's, and a group called " ERA " , who were mobilised but never

actually sent out to the Gulf in 1991. Wessely claimed this format was

necessary, as it was impossible to compare soldiers with civilians, as

soldiers had higher levels of fitness and health than the general

population. However, he never explained why he could not use civilian

members of sports clubs - parachutists, footballers etc - as

comparable

controls. Using soldiers as controls may have downplayed the

significance of certain factors in creating illness - such as

vaccinations - which were common to all.

Fifty symptoms had been chosen and their frequency in the different

groups of soldiers plotted on a chart. Wessely claimed that nothing

new,

ie not seen in previous wars, had been found. In fact this is not

true.

Alopecia (hair loss) was not a frequent " medically unexplained "

problem

of past wars, nor was the presence of antibodies to squalene, a

chemical

used as an adjuvant (vaccine-enhancer).

Wessely did not comment on these problems at all, but cheerfully

explained that a wide range of symptoms including fatigue, headache,

numbness etc had been found in all three soldier groups. The Gulf

veterans differed, he said, only in that they reported these symptoms

more often, and at greater intensity. He claimed the pattern of dots

on

the graph proved that there was no unique Gulf War syndrome, only a

raised incidence of reports of symptoms also reported by Bosnia forces

and the ERA group who never went to the theatre of war.

However by choosing to study a pool of deployed veterans in which the

ill were diluted by the presence of well individuals (who also

reported

symptoms when asked on a questionnaire), was Wessely really in a

position to determine if ill veterans had a pattern of symptoms or

not?

While many who believe that Gulf War illness has organic causes would

accept that there may not be one " unique " Gulf War Illness, but

several,

Wessely nevertheless clouded the issues by portraying Gulf War

syndrome

as just a higher rate of symptoms habitually complained of by

returning

soldiers. He later brought in several factors he claimed partly

explained this - alcoholism, depression etc.

There was no attempt to reflect on the possibility that a soldier,

chronically ill and with neither recognition nor treatment, might turn

to alcoholism or become depressed as a result. In fact, veterans

report

that many of their number did succumb to these problems as a result of

their illnesses, especially as they received no pension and were

unable

to work.

Many hundreds are also known to have died as a result of suicide, or

had

car accidents that may have been linked to neurological problems of

co-ordination etc.

Wessely was at pains to contrast what he claimed was evidence that the

veterans were in good health with their " perception " of their health,

which was poor. However, the question remains as to whether the

neuropsychological tests he conducted were an adequate measure of

health

or not. So for example, while many soldiers complain of severe memory,

concentration and other cognitive problems, he claims these were

subjective and that he found no proof they really existed. However, no

neuro-imaging was done. While scans do not always reveal the presence

of

chronic neurological diseases, certain new techniques, for example

SPECT

scan, may show hidden pathology.

Wessely described a large overlap between the symptoms reported by

Gulf

War veterans and that of civilian sufferers of ME/CFS, as well as

those

who attribute their illness to candida infection, vaccine damage and

other conditions. He claimed that this indicated that soldiers were

exposed to the same cultural factors as civilians, and therefore had

the

same " health concerns " about factors in their environment.

This jarred uncomfortably with his earlier statement that deployed

Gulf

veterans complained of symptoms at roughly twice the rate of Bosnia

veterans and non-deployed Gulf forces.

Ciaran Farrell, a sufferer of severe ME, asked why Wessely did not use

the Canadian guidelines, as opposed to the Oxford Criteria, with

regard

to ME. These, he pointed out, would distinguish between ME, Gulf War

Syndrome and Organophosphate poisoning and were compatible with the

WHO

entry for ME at G93.3 in the International Classification of Diseases

(ICD) as a neurological, not psychiatric, disease.

Wessely did not answer this question, but simply claimed that no one

was

more keen than himself to resolve the mystery of chronic fatigue, and

that truth would be known if enough researchers considered the topic

important enough to study, and were allowed to do so free

from " pressure

and intimidation " .

A large part of the lecture was given over to the story of a First

World

War veteran, Arthur Hubbard. Wessely told how, as a teenager, Hubbard

had participated in a battle with a horrific level of casualties and

had

been forced to shoot three enemy prisoners at point blank range.

Shortly

afterward, he reported sick, unable to walk, crying, suffering

headache,

chest pain and other problems.

Wessely was at pains to emphasise that the young man " was completely

unhurt " in the fighting, " completely unscathed " . The unmistakable

implication, of course, was that this man's symptoms were caused

entirely by stress. We have now been informed that the historical

records show Wessely had omitted a crucial point -

Arthur Hubbard had been shot below the knee.

Wessely was also challenged on the issue of shell shock during

question

time by Ciaran Farrell. He pointed out that shellshock was not a

universal label for illness caused by stress alone, but was divided

into

two main categories. The first was applied to those who had been

physically injured in battle, suffered concussion etc. The second was

reserved for those the Army considered emotionally damaged. Wessely's

comment that many of the symptoms reported by Gulf War soldiers today

were reported by soldiers in the First World War are no comfort when

we

remember that that War was infamous for the terrible use of gases - a

fact not mentioned at all by Wessely, except in the context of yet

another horror that could have given rise to psychosomatic symptoms.

Where Wessely was prepared to give ground, at least to a small extent,

was in the area of vaccines. He admitted that some evidence had been

found linking both the type and the quantity of vaccines administered

to

soldiers with illness. He said the combination of anthrax plus

pertussis

(whooping cough) vaccine in particular had been suspect. However, this

admission was eclipsed by his focus on the notion that soldiers have

always complained of " medically unexplained " symptoms, even in

n

times.

He showed the audience a slide entitled The Illnesses of " modern life "

and the " Contested Diagnoses " . He rated current " cultural

controversies "

at least as important as proven links with vaccines in explaining the

illness.

He largely ignored the issue of depleted uranium, which he claimed had

no radioactive effect, but was harmful only due to its heavy metal

toxicity. This contrasts what many published researchers have written.

Instead he conjured up the " fear " of Chernobyl as a possible cause of

symptoms.

Wessely dispensed with the question of the " NAPS " tablets

(pyridostigmine) by simply saying it was not possible to study them.

When question time finally came, it was short. Professor Hooper raised

some extremely important points, highlighting the fact that Wessely

had

ignored the conclusion of the Research Advisory Committee On Gulf War

Veterans Illnesses in the USA (www1.va.gov/rac-gwvi/ ) which found

proof

of brain damage in American veterans. Researchers had also found

correlations with the location and duration of deployment, which

Wessely

had ignored or glossed over.

Finally, Prof. Hooper wanted to know, why had he made no mention of

the

nerve agents that had been released, either in the course of war, or

in

the demolition of munitions? These agents were known to be able to

cause

chronic illness even from low-dose exposures.

Wessely flatly refused to accept that there was any evidence that

soldiers had been exposed to neurotoxic agents. This seemed odd as he

had earlier, when describing the bulky chemical-biological protection

suits that were worn, stressed the fact that Saddam Hussein was known

to

possess chemical weapons, and even shown slides of gassed Kurdish

victims. No such weapons were released he argued, else there would

have

been casualties. He completely ignored Prof. Hooper's point that

neurotoxins may cause illness without giving rise to acute symptoms.

In

fact many veterans report the repeated sounding of the chemical sensor

alarms, which their senior officers told them to ignore as " false

alarms " . Also of relevance to the debate on neurotoxin exposure is the

evidence linking bacterial sources of neurotoxins. For example,

certain

mycoplasma strains have been found frequently in ill veterans, and

borrelia burgdorferi (cause of lyme disease) are known to be present

in

Iraq. Both of these have been implicated in chronic neurological

disease. Wessely shrugged off questions about ME from the floor, and

could be seen smiling to himself as sufferers were speaking.

One obviously ill woman, speaking with difficulty, pointed out that

modern sports medicine could now physiologically explain several

previously " unexplained " symptoms. Wessely blandly replied that

medical

views can change. What are the lessons that can be learned? Wessely

has

made a concession to the viewpoint that Gulf War illness is real, but

only a small one. He now admits to a possible link between some

illnesses and the cocktail of vaccines veterans received against

possible biowarfare agents.

He implicates the role of social ills and psychiatric symptoms like

alcoholism and depression without for a moment considering that these

may be a consequence, not a cause, of years of chronic illness and the

financial ruin and destroyed relationships that often result. But his

unspoken main message remains the same - most of the soldiers are

exhibiting " illness behaviour " , not illness. They complain of symptoms

only because society and the media encourage them to do

so. " Individual

reinforcement " is listed as a pertinent risk factor in veteran

complaints. The conclusion is inescapable - for most, if only doctors

stop reinforcing their belief that their pain, crushing fatigue,

memory

loss, disappeared hair, abnormal antibodies etc is real, these things

will somehow vanish. The sub-title of the lecture had been

" Something old, something new, something borrowed, and something

blue " .

This summed up Wessely's view, he said. The only " new " element was the

possible involvement of vaccine damage in some veterans; for the rest,

it was either something old - soldiers had always complained of

" unexplained " syndromes; something borrowed - soldiers picked up the

rest of society's irrational fears about vaccines, pesticides,

radiation

etc, and something blue - physical disablement was caused by

depression.

This is the insulting and trivialising attitude we have come to expect

from Wessely.

So what next? Wessely claims that his manoeuvres to limit entry to the

" freepublic lecture " were a result of intimidation and death threats.

Yet he brings his young son, allows him to wander about alone, and

even,

in the course of his lecture, tells the audience the exact location of

his house, and the name of the local pub he intends to visit at the

end

of the evening! Clearly Wessely was not afraid of being physically

attacked on Wednesday. So what had so terrified him, that he had to

persuade the prestigious Gresham College to collaborate with him in

this

childish prank and deceive the public?

Simon Wessely is afraid of the truth. We need to continue to shout it,

at the top of our voices. Many of us would like to take things

forward.

For people who may have a variety of different diagnoses, but who

share

the common problem of a serious chronic illness not being taken

seriously, joining forces together is empowering.

The ME/CFS, Gulf War illness, Lyme disease, fibromyalgia, multiple

chemical sensitivity patients and many others could all benefit if we

unite to demand an end to the mislabelling of our illnesses

as " illness

beliefs " .

We urge everyone who is interested in forming a united campaign of

this

nature to get in touch so that we can plan and discuss together.

Finally, we thank everyone who came, whether representing themselves,

or

a loved one.

And we also thank those members of the organising committee who worked

hard to get things off the ground, knowing they would never be able to

see the fruit of their labour because they were simply too ill to

come.

Without their help the protest would not have been possible.

Note: A web page will be up soon recording the protest in words and

photos.

If you are interested in further actions, please email us at

gwsme4real@