Below
is the email and the article which we have sent out to every
Labour Party Member of Parliament the day after the Queen's
Speach as part of our this campaign. If it touches you in any
way and you want to add your voice to ours, please use the page
to locate your own MP's email address or snail mail address
to do so. Let him have your own personal story, detailing what
"Hoops of Fire" ARC has put you through. If he is
a Conservative MP or a Liberal Democrat, they will be next on
our agenda, so it might be time to prepare them.
Firstly
the email text:
Dear Honourable Member,
The document attached
details why thousands of people in this country are suffering
from Adhesive Arachnoiditis. I have written to your party
headquarters three times this year asking for your Party's policy
on this issue. All I have recieved are formulaeic replies
boasting of your successes in other areas of the body politic.
You are "New Labour"
the government of the people, who listen to the people. It is
difficult to see that from the working person's perspective.
Many cases of ARC are intiated at work through occupational
repition and the resulting back pain. Therefore we are
giving you the first chance to answer our needs, before we move
on to the other parties. I trust that you will give this
document the attention it requires.
Remember if you will
that David Blunkett promised ARC sufferers that he would meet
most of their demands, that was in 1993. Maybe you are
the very people who have to ask him if he forgot those promises
when he was promoted after you took up office.
You may also recieve
details of their cases from your constituents as we have set
up a process where they can contact you with their own story.
However it must be remembered that some of the worst cases are
not computer literate or equipped, due to financial reasons
and others simply have not got the strength to sit and write
for any length of time.
The vast majority of
citizens with ARC have contracted the disease through
iatrogenic means. Some of them are suffering without knowing
what the cause of their pain is. It took three years for
my ARC to be recognised, that is three years, five GP's, 2 consultants
and a huge amount of pain, which I now know is permanent.
Others have been given "bucket" diagnosis' such as
Firbro-Myalgia. In fact anything that doctors can use
instead of the truth. That too is explained in the attachment.
There are many facts
quoted in the body of the text. These are all based on
documents that I have in my possession, they are not a compilation
of information available on the Web, however they will all soon
be available on our site, some of them can already be found
there. If you would like copies of these documents now,
please ask.
If you wish to comment
on the attachment for public consumption, I would be pleased
to publish your reactions, favourable or otherwise on Arachnoiditis.co.uk.
Just email: mike.feehan@arachnoiditis.co.uk
Please take the short
time required to read the document, it could so easily be that
you, your spouse, or a family member who next joins the swelling
ranks of sufferers.
Yours faithfully,
Mike Feehan
It is terribly sad that this
disease is no longer a "rare" occurrence. Despite
the fact that medical professionals will insist that it has
only darkened the horizons of a few. It is even sadder that
those who suffer are meeting, not with the sympathetic attitude
that they deserve, but with a patronising denial of their condition
and an underlying attitude of annoyance.
This superior attitude is especially
pr onounced, in the UK, when the non-fee paying patient infers
that the condition has an iatrogenic history. The same expert
when employed in a private capacity is very much more likely
to exhibit respect and empathy. It is a classic case of the
Great Divide between those who have and those who have not.
Such treatment is the standard
fare for patients world wide who suspect that they may have
contracted ARC as a result of a procedure performed by the very
people who are/were supposed to be helping them, the only too
rare, neuro-specialists. It is criminal that these "rare"
specialists, many of whom are holding down up to six different
positions at the same time, are denying the very existence of
the condition because it might just throw some doubt on their
actions, or the actions of their predecessors.
Why is it that they need to
cover their backs and insist that the current number of patients
trying to live normal lives with ARC, is not unusual? There
are many factors which make up the answer to that question and
some of these will be:
-
Guilt - attachable to both
themselves and their predecessors.
-
Denial - to admit they do
feel guilty would be to admit that the patients are right.
-
Fear - of being sued, of
being found liable for their actions, of losing their positions
of power.
It is time that we, as patients
got together to let them know that this behaviour is unacceptable,
that we are no longer going to swallow their meaningless medico
babble, and that, because it is our taxes which keep them in
fine style, we are going to assert OUR authority as consumers
and demand that they recognise that the day of the doctor as
an almost godlike, figure has passed.
At the same time, and for the
reasons enumerated below, we must also demand that our political
representatives redress the wrongs which we know have been perpetrated
on our bodies, for they too have a muddy history where this
issue is concerned.
The rise of the PC and the Internet
has ensured that this can be done. Medical knowledge is now
freely available at the click of a mouse and medical Latin terminology
no longer acts as a cipher which confuses all.
If we look at our bodies as
biological machines, then doctors are merely the "grease
monkeys" of human biology, the mechanics who keep the engine
up and running. So we should furnish them with imaginary white
boiler suits (somehow that is not so imposing and superior)
and do what anybody would if their car came back from the garage
with more faults than it went in with. We must complain - loudly
and incessantly.
These biological mechanics,
like their motoring peers on high streets up and down the land,
have to be held responsible for their errors.
Certainly, no self respecting
motor mechanic would introduce a foreign substance into the
brake, oil or fuel systems of a vehicle and expect it to work.
Then, when it doesn't, tell the complaining customer that it
was all they had at the time, or, even more stupidly, that they
thought the benefits of their actions outweighed the risks and
they would have told you about that, but they didn't want to
worry you.
Why would, and why should, we
put up with equivalent behaviours from medical professionals?
To do so is madness. With all that is known about the human
machine, it's design features and components, the hypothetical,
in many areas, has been done away with. That ambiguity in medicine
which once hung over it's practitioners like the proverbial
axe, in many instances, is no longer applicable.
Certainly, there are still new
entities out there which we know nothing about, and, there will
new surgical procedures and therapeutic treatments arising from
research. We can accept that there will always be some degree
of experimentation required to identify and eradicate human
pain and suffering. However that in, and of, itself should warn
us not to treat these bozos as infallible, because they very
clearly are not, and we are the living proof of that.
A Short History of the
Iatrogenic Causes of ARC
(Bad Science, Political
Skullduggery, Scandals and Pain)
Naturally caused ARC was identified
at the end of the 19th Century. At that time it was rare, being
the result of physical trauma or viral infections, including
STDs. In no way should we accept it's growth throughout the
20th Century. Especially when this rise in the number of sufferers
has been generated by adverse side effects of medical experimentation.
Experimentation with, contrast
media, epidural injections or back surgery. I use the word "experimentation"
because I, and hopefully you, will label any procedure where
the outcome is not completely known as an experiment.
X-rays enhanced by a contrast
media injected into the spinal column can only be termed experimental
processes, and such processes have continued for almost one
hundred years, creating misery, disability and de spair. Ironic
when you consider that these toxic fluids were supposedly identifying
natural injuries and diseases with the object of curing them,
at least that is what we are led to believe.
I use the word "toxic"
because such effects are recorded in me dical journal letters
from the US and the UK. Pantopaque dissolves it's way through
wooden flooring and both Myodil and Pantopaque dissolve plastic
syringes and the rubber fittings of syringes.
How on God's green earth could
anybody inject such substances into the human body and consider
the benefits were greater that the risks? It beggars belief
that those who originated these procedures were doing so with
the health of mankind foremost in their minds. Hopefully reading
through this document will underline the fact that commercial
and medical factors were at odds and commerce won the day.
Iophendylate(Pantopaque
(USA) and Myodil (UK))
Iophendylate was the only ingredient
of substance in these two contrast media, designed to be injected
into the spinal cords of back pain sufferers in an attempt to
outline the spinal structure and diagnose what was causing it.
Lawyers for the manufacturers of these two products try to separate
them by legal hocus pocus, I address that issue below.
Under the Myodil name it was
used in the UK from 1945 until the manufacturer withdrew from
the marketplace for "commercial reasons" in the 1980's..
Reported cases of ARC in the UK started to rise in the late
1960's, only 15 years after it was introduced. The figures that
I have based that statement on come directly from the Medicine
Control Agency's file on Myodil.
This in a way was also manufactured
by Glaxo. When the file was required as part of the Myodil Class
Action in the early 1990's, it was declared lost by the MCA.
Luckily for them, Glaxo also kept records of correspondence
and photocopied their documents and sent them down the MCA,
who in turn sent them to the Plaintiffs' Solicitors.
Where such records were kept
there was no procedure in place for doctors to report them to
the Committee on the Safety of Medicines. The only body which
existed prior to the creation of the Medicines Control Agency
with the job of protecting patients from the adverse effects
of medicines, diagnostic products, or medical procedures.
The public had the right to
assume that after the Thalidomide disaster this would have been
put right, but it was not. The legislation arising from that
tragedy did not apply to Myodil. It was twice waved through
the application process because it was already in use and there
were not enough "reported" cases to generate concern.
Another thing that I did note
in my analysis of the Myodil file was that Glaxo, in correspondence
with the new MCA, asked for details of any cases of complaints
of Adverse Reactions to Myodil, which they had received. Is
that not a bit like the tail wagging the dog? I think so, and
so do many others. Once again Glaxo and Myodil seem protected.
Why?
Production Processes?
Legal Obligations and Scandal
In another portion of the MCA
file on Myodil, where the company has to describe it's "manufacturing"
processes, they cannot disguise the fact that all they did was
import Iophendylate, test it, sterilise it and bottle it. The
same process is described in a deposition by a former Executive
of the Lafayette for a compensation case that was settled out
of court.
Lafayette held the same position
in the market place in the USA as Glaxo did in the UK. They
were the sole "manufacturers" of Pantopaque in the
US for the same time period. This company was berated by the
FDA in the early 1970's because it had not reported any adverse
effects following the use of it's product. It was legally obliged
to do this, but the regulations were ignored and they somehow
got away with it. I cannot say how they did so.
However, I did note in my research
for this article, and others I have written for my site Arachnoiditis.co.uk,
that in the early1980's the entire Generic Division of the FDA
came under an investigational microscope because of bribes accepted
by it's staff. These were given by pharmaceutical companiess
to ensure that their versions of generic products were not examined
too carefully for quality
Although Pantopaque was not
a generic product, I did note that a very senior official of
the Generics Division was tried, found guilty of such offences
and imprisoned. This is the same man who wrote the letter to
Lafayette complaining that they had not met their legal obligations
in reporting the adverse effects of Pantopaque for over 25 years!
So far I have not discovered Lafayette's reply to his protest
and the refore have to wonder if it ever existed.
The Fuzzy Origins of
Iophendylate and Government Denials
It may intrigue you to know,
as it did me, that the sole supplier of iophendylate for both
the US and the UK pharmaceutical companies, Lafayette and Glaxo,
was Eastman Kodak.
For reasons best known to themselves,
but which we can surmise, Glaxo disguised this by importing
iophendylate through the company known as British Drugs House(BDH),
a company which it later bought out. Having done that, they
then had to apply for an Import License, which revealed who
the real supplier was, i.e. Kodak. Again this document is recorded
in the MCA's Myodil file.
I must admit that I have often
wondered whether BDH was being set up to take a fall should
the iophendylate adverse effects become public knowledge. That
is a question which begs an answer. Another fact which causes
my eyebrows to rise is that the sponsor for the original research
programme into iophendylate at Rochester University in the US
was Eastman Kodak. Whilst I cannot substantiate some sufferers
statements that the original iophendylate was a waste product
of the photographic industry, it would nevertheless seem a logical
conclusion.
What is "acceptable"?
I cannot speak for my readers,
but it is my belief that where one medical authority is not
convinced of the efficacy and safety of a new therapy, or, diagnostic
procedure, it should not be used on a regular basis, only in
life threatening circumstances.
Dr Jaegar, an American Neurologist,
stated in his paper, published in the early 50's, that in his
view the new product, Pantopaque, should only be used under
such conditions and that he was horrified that it was being
used routinely.
Another fact is that the scientific
and medical journal articles which described iophendylate products
in 1944 to the medical community on both sides of the Atlantic
were, strangely, at odds. The initial American paper, which
included case comments from a British Army Doctor (Capt. Mayfield),
stated that "the sequelae (arachnoid cysts) produced by
Pantopaque are smaller than those with Lipiodol (it's even more
toxic predecessor)." So, unequivocally, it did cause damage.
This is the truth of the matter, and no matter how many times
we are told otherwise by the medical profession gloss over it,
it will always be the truth.
That being the case, why did
the British Paper published the same year affirm that, "American
workers have now produced a non-toxic contrast agent."?
Obviously a lie, but, whose?
Consider this, if you will.
Wartime Britain was running out of manpower in 1944. Some of
this was due to claims of back pain, probably more than the
static one in five of the population. There was therefore a
political imperative which lay at the roots of Myodil being
welcomed as a breakthrough. It would show up those who were
shy of work or military service by allowing doctors to examine
them more closely and either confirming or denying their claims
of back pain. Those who were "putting it on" would
be revealed for what they were and those who were not would
have their problems identified, treated and returned to a useful
occupation.
Another "co-incidence"
that you might like to examine is that the British manufacturer
of Myodil, Glaxo, loaned their Managing Director to the Government
during the Second World War. There he took up a position in
the Ministry of Food. In 1945 it was this man who led a commercial
mission to the US, the details of which are somewhat hazy. In
the same year, and maybe on the same aeroplane, the scientists
who had produced penicillin travelled to the US to convince
their American counterparts of it's benefits and, asked them
to facilitate it's bulk manufacture. A process which obviously
saved a great number of lives.
So where's the connection?
Back pedalling slightly, the
FDA, in late 1944 had grave suspicions about Pantopaque, and
had written to the researchers, in very strong terms demanding
that they resolve them. A few months later, apparently without
those resolutions, the product was released on to the market,
thousands of US servicemen were examined with it, and guess
who got the rights to sell it in the UK and Europe?
In the same year, 1945, The
Penicillin Act was passed in the US allowing mass production
of that life saving drug, and here again the details are somewhat
hazy, an American researcher is trying to discern exactly what
happened.
What does appear to be a logical
conclusion is that our member of the Ministry of Food swapped
Penicillin for Pantopaque. I say this because UK Governments
(both Labour and Conservative) since the war, when asked about
the development of Myodil and the clinical testing of it, state
that all the appropriate work was carried out in the US. This
fact over rides the Lawyers attempts to claim that the two products
were different.
If you, like I, smell a rat
here then you should be calling for the exterminators so that
we can clear away the detritus of years passed and leave only
the truth shining brightly. Maybe now you can see where that
medical guilt originated. I believe that the British Authorities
(Medical, Political and, maybe, Industrial) were hoodwinked,
got the wrong end of a bad deal and have still to admit to it.
In their embarrassment political
authorities have with unerring regularity dismissed any Parliamentary
questions about Myodil and Arachnoiditis with the same answers.
No matter which party was, or is, in power. This is ably demonstrated
in a document that I have put together having searched Hansards,
the Parliamentary minutes, for any mention of this tragedy.
Maybe the fact that Britain
was ruled by a coalition of all political parties during the
war can explain this seemingly identical response? The honesty
and integrity of those authorities must be in doubt, for they
still cannot admit to their error, and, whilst sufferers soak
up the pain of ARC and struggle with it's other symptoms, they
sit comfortably in power denying these events and stating ad
infinitum that, ".........it was all we had available at
the time.", and other such nonsensical excuses.
How and why does iophendylate
harm patients?
Whether it was necessary to
use Myodil, is, once more an ambiguous question. Scandinavian
researchers would not and searched for another less toxic substance
to do the same job. It was they who originated the water based
contrast agents to avoid some of the dangers of the oil based
Myodil. Unfortunately, 20 years after their "safer"
products were released onto the market, some of those it was
used on began going down with ARC.
This fact highlights what ARC
campaigners, with or without medical qualifications, consider
to be the truth. This is that anything which is injected into
the Cerebrospinal Fluid of the spinal cord is treated by the
our immune systems as a foreign body which it has to defend
itself against. As a result the body produces excess proteins
and leukocytes using them in an attempt to encapsulate the incoming
pollutants.
This changes the appearance
of a normally clear fluid to a milky colour. The encapsulated
products of this process adhere to the walls of the cord, causing
damage to that fragile structure and initiating a process of
inflammation which, in time, produces what Neuro-radiologists
describe as an empty thecal sac. This is where the nerves themselves
swell and, over time, adhere to the inner wall of the spinal
cord leaving an empty space behind them. How can anybody be
surprised that these reactions cause the chronic pain and a
miscellany of other symptoms due to nerve damage?
Depo-medrone, Depo-medrol,
epidurals, etc
The fact that another group
of ARC sufferers has been iatrogenically added to our ranks
should not come as such a surprise, especially when they too
are firm in their belief that spinal injections of medical preparations
were to blame. One group of them were given steroid injections,
ironically in some cases to relieve the pain of ARC caused by
other means, i.e. Myodil.
What we must not ignore is that
many women are daily being encouraged to have an epidural injection
for their birth pains. In some hospitals such offers are withheld
until labour pains are so bad that it is not likely that the
women in question will refuse. It eases the flow of women from
the Delivery Room to the Ward.
The other issue we have to raise
on epidurals, beside the immuno system reaction, is that the
target aimed at is tiny and, in the case of women in labour,
the only viable method for identifying the fact that the needle
has reached it's target is "least resistance". Which
means that if you cannot feel resistance to the needle you are
in the right place. There's technology for you.
In one heart-rending case a
young lady wrote and told me that she had a very young and inexperienced
physician called to the Delivery Room after she had been in
labour for almost eight hours. He attempted to insert the needle
five times, thankfully for her the sixth was in the "right
place". As a direct result of this, she cannot care for
or play with the child she bore without the pain of ARC which
was the result of his clumsiness. How many more women are suffering
in silence, some of them being told that their pains are psychosomatic?
This is a classic excuse used on many occassions to dismiss
their symptoms and avoid the conclusion that the epidural was
to blame.
The medical community will argue
up and down, high and low, that intrathecal steroid injections
do not lead to ARC. I should therefore respect their expert
opinions and shut up? No way. These steroid preparations were
never designed for such a use, in fact the package inserts states
in huge letters, "Not for Intrathecal Use".
But they are.
Every day, despite this warning
and excluding mothers in labour, people in this country are
receiving these injections to relieve pain or to allow them
to undergo surgery without a general anaesthetic. Ironically
many are patients with lower back pain whose medical records
show that they have had one or more Myodil myelograms plus or
minus back surgery.
Doctors can apparently legally
ignore such label and package insert warnings should they think
otherwise, for it is not only Depo-medrone which is used experimentally
in this way without clinical trials being carried out to prove
it's worth. Depo-medrone (-medrol in the US) was also designed
to be used with special needles which were rejected by the FDA.
This did not stop doctors using it with other syringes.
Again that is a nonsense which
takes us back to the car mechanic analogy, "Sorry sir I
thought paraffin would be good for it. Never mind the bloke
next door can sell you a great car to take it's place."
Only with human beings we cannot go out and purchase another
nervous system.
The Myodil history above describes
the body's reaction to substances it recognises only as invasive
pollutants and the mechanism it uses to deal with them. Should
we therefore be surprised that these steroid injections are
also on the list of iatrogenic causes of ARC? We would be fools
to do so, common sense, not medical denial, should prevail here.
But the negative reaction of the medical profession to such
an hypothesis is that which prevails and one has to ask why?
Admittedly they are the experts,
but sometimes the operator of a faulty machine is the last to
know why it has broken down because they are too close to it.
There is also a natural defensive reaction. Should they admit
that this is indeed correct and that pain blocks and epidurals
cause ARC, they would also have to admit that the Myodil victims
are right and vice versa.. They would have to deny themselves
the intrathecal route as a highway for other drug therapies.
I would suggest that you will
not discover the truth from such people. Their overbearing view
of their own correctness blinds them, and, in overcomplicating
what is a simple natural reaction they also manage to blind
those who listen to them. What is so very clear to those of
us without the qualifications they hold is: Foreign
substances injected into the spinal cords of human beings causes
Adhesive Arachnoiditis in a proportion of those people.
If a particular mode of mass
transport in use world wide, though efficient, on time and economical,
nevertheless caused two or three deaths per day, would this
be acceptable? Would the operators be praised to the hilt for
their work and the relatives of the dead told that it was all
we had available? Again the answer is a resounding, "No."
Surely that rings as true in your head as it does mine. If not,
I can only ask if you are in the right job.
The Mysterious Failed
Back Surgery Syndrome
Spinal surgery is very common
today. Such conditions as Scoliosis require it. That is what
the medical profession tell us as they also explain the need
for discectomies, laminotomies, etc. But is that really true?
Professor Alf Nachemson a Scandinavian expert disagrees. In
his view far too many surgeons of all persuasions are poised
with the knife ready when presented which such cases.
What he and his colleagues recommend
is exactly the opposite to the staid backward looking policy
of bed rest, pain blocks (Depo-medrone raises it'r ugly head
again) and finally surgery. In his eyes all patients reporting
back pain should stay as mobile as possible, work where they
can and have manipulative treatments, such as those used by
Osteopaths and Chiropractors.
Now that rings true with me,
it sounds far more like commons sense, it goes back to basics
before bringing on the big guns of invasive procedures. The
problem with this is that such facilities are not available
to all. In the UK Osteopathy is still being evaluated before
being offered on the NHS, so only those with deep pockets can
afford it. It should never be confused with Physiotherapy which,
it would appear, some people do.
The end result of multiple back
surgeries, as many of my cases reflect, is ARC. Go back to the
section on foreign body reactions by the spinal cord and you
can see why. Most back surgery is extremely robust, inserting
Harrington Rods in the body of a person, usually a child, is
not a sight for the squeamish, I know I have the photos to prove
it. Such robust procedures can only lead us back to inflammation
of the cord and where that leads to. In today's enlightened
world research could lead to many of these surgeries being replaced
by more gentle therapeutic modalities. Governments should be
funding such projects which aim to eradicate the need for them.
Ignore us at your peril
Quite rightly, as a hungry child
will cry for food to banish emptiness, every ARC sufferer should
be crying for recognition, for research to fill the void of
ignorance and develop meaningful therapies which can help us
back to normality. We should be demanding justice and taking
part in campaigns to change the law.
Our truth is that for the vast
majority of us this is not possible. It is pain, for the most
part, that bars us from rallies, marches and the like. It is
our drug regime that strips us of the will-power and concentration
necessary to be mentally prepared for such actions and physically
able to travel to them. On another level many of us have not
got the financial resources required to free us from the house
and undertake costly campaigns. It is as one of my correspondents
said, "A sad and sorry survey."
It is therefore the duty our
political representatives to remedy the wrongs that have left
us in this state and, most important of all, pass laws which
will:
-
Set up an independent Medical
Compensation Board to replace costly litigation, which currently
serves the plaintiffs and the country very badly in economic
terms.
-
Declare a moratorium on all
spinal injections except in those cases where they are required
for life saving purposes.
-
Initiate and fund research
into non-invasive therapies for the treatment of lower back
pain.
-
Ensure that Osteopathy for
the treatment of lower back pain is available on the NHS and
that it is the first level of treatment in all cases.
According to Government Studies,
some of which go back to a time prior to the First World War,
one in five people will report back pain to their doctor every
year. That is a very stable figure and one that demands that
the litany of disasters this document describes cannot be afforded
by society for much longer, for that figure is now growing and
this document shows why. According to one extrapolation, by
the year 2025, given this growth in numbers the entire workforce
will be at home due to back pain.
I personally believe, very strongly,
that this country's medical infrastructure and that of many
others cannot afford a run of successful litigation which would
open up the way for thousands more. It would also be prudent
for governments to ensure that this does not take place and,
the way in which some cases have been lost, has been taken by
some as an idication that this is indeed what is happening.
But there is another way of
dealing with this problem which would draw fulsome praise from
the electorate and not unfair critisism. Pass legislation which
will save money in the short term and ensure a fair hearing
for complaints of medical negligence, or iatrogenic illnesses
such as ARC.
A more detailed list of suggested
government actions is to be found on our Campaign Page.
I implore you to join
Tim Collins' All Party Myodil Group for starters and formulate
Private Members Bills which would:
-
overhaul the medical
compensation procedures,
-
ensure that doctors
cannot use a drug for a purpose other than that for which
it was designed without full clinical trials, and,
-
allocate adequate
funds for research into non invasive treatments for back pain.
It has been said that
Politicians in this country are ignoring ARC on the Myodil issue
long enough to ensure that we are all dead. A sad truth which
is detailed above is that more iatrogenically caused cases of
ARC due to other medical procedures are swelling our ranks daily.
Please bring a halt to this suffering.
Top
©Mike Feehan 2002
