Parent of a Son with ME

Please forward/repost.

Letter sent to a senior Parliamentary Aide by the parents of a son
with ME (scanned, so there may be minor errors - Doug)

20th May 2008

Dear Aide

You will notice there is no return address on this letter - the reason
- we no longer wish to be "brushed –aside" with the Pro-forma replies,
which we usually receive in response to our heart-breaking pleas.

Secondly, we also realise the PM will never see this letter, but again
having now experienced the insipid and ineffective replies to our
requests this past 8 years, we're now hoping and praying that by HIS
not seeing and indeed not listening to the electorate - a DOWNFALL
will ensue, and thankfully it would appear this is beginning to take
place.

THIS is our final letter to this Uncaring and Inhumane government and
this letter is perhaps as much a `healing' exercise for ourselves (if
that's at all possible given our tragic circumstances) as it is for
anything else.

As a family of Life Long Labour supporters, indeed supporters of
labour since it's conception, our family - and as many friends as we
can muster and bring on board - will no longer support this party
which so easily Disregards and Distorts TRUTH.

When first elected back into power all those years ago, we had HOPE,
again, and we were holding our breath waiting on the news we longed to
hear, that this so-called party of the people, would take care of
those in most need - people who were not receiving the JUSTICE they
were entitled to, from their then elected representatives.

Our hopes were crushed, however, - almost instantly - when we heard
former party rhetoric spewing from the mouths of our new labour
leaders, when it came to RECOGNISING AND FUNDING BIOMEDICAL RESEARCH
INTO THE MULTI – SYSTEM, ORGANIC, DYSFUNCTION DISEASE— MYALGIC
ENCEPHALOMYELITIS ( M.E.).

Our hearts sank and were crushed, when we realised that this new
labour leadership was also going to ignore the now 3000 – ( yes -
Three Thousand plus) GLOBAL Biomedical Research Studies, which PROVE
this diseases' ORGANIC basis.

Indeed, this new labour government would continue to brutally and
corruptly insist that that this bonafide neurological disease was
simply a "psychological tiredness" and all that would be required
would he some positive thinking (C.BT. - cognitive behaviour therapy).

----- HOW DARE YOU ------

To ignore Truth and to cease to recognise it, encourages a Corrupt
Ideology.

It's a sad thing to have to write, but it would appear that the only
thing that would get through to you and your leaders, is for the
latter to fall victim to their own success - to be struck down with
this life-stopping physical illness; - to lie bed-bound for decades
cruelly abandoned and duplicitously ignored by a government who really
don't give a damn.

They haven't as much as carried out the basic studies of the diseases
epidemiology, aetiology or pathogenesis.

We have witnessed our once healthy, vibrant, life-loving and
hard-working son CRUSHED by this now proven killer disease, his
distress tangible and heartbreaking for us, his parents, who cannot
access the biomedical research required to help treat and improve his
quality of life.

WHY? because this government continues to perpetuate his suffering,
through their shameful and cruel lies -- lies necessary to ENDORSE
the Wessley School of psychiatrists who find it so easy, to ignore

* Truth

* Scientific Biomedical Evidence

* The W.HO.'s neurological classification of the disease – while they
subsume this genuinely organic disorder under the title of a
psychiatric illness.

This government has allowed this now proven physical disease to he
"lumped – in" with `fatigue' conditions and `somatoform disorders,
none of which vaguely resemble the cellular, metabolic and acquired
central nervous system dysfunction, that is true Myalgic
Enccphalomyelitis.

It simply beggars belief, in a" democratic" country.

What has happened to Truth ?

What has happened to this government's duty of care to our son?

Who are you people?

Our son is severely affected by M.E.: he exists in a type of
"living-death" state: he is not able to carry out basic bodily
functions, by himself. Even our doctors are frustrated as they try to
treat "an unknown". As growing numbers of our citizens fall victim
to this very serious condition - many children included - the disease,
if severe, reduces "activity" to basic survival needs and has a
sickness impact profile (S.I.P.) MORE EXTREME THAN THAT FOUND
END-STAGE RENAL DISEASE AND HEART DISEASE.

This government brutality and betrayal of it's citizen's trust - has
no bounds.

The number of patients suffering from Myalgic Encephalomyelitis across
Britain, is increasing annually. It is estimated there are now 1/4 of
a million - and counting - thankfully not all as severely affected as
our son and the numbers affected, far out strip numbers for example of
M.S. sufferers.

Yet still this cruel government, maintains it's corrupt stance in it's
concealment of the true facts.

As we write this final letter to you, the M.E. community around the
UK, including the families and friends of the quarter million
patients — a significant number of votes, you'll agree 1/4 million +
…. ? - are being urged to let their disapproval of the duplicitous
behaviour of this government towards the M.E. patient and the
scientific proof of their illness' organic basis, be felt at the
ballot box.

A change at the top surely couldn't be any worse. As parents whose
pleas were ignored, we hope and pray we won't have to wait the two years.

A family of a very Physically ill son, coping alone , who have been
abandoned and treated feloniously by the very party our great great
grandparents, great grandparents, grandparents and parents helped to
form, run, and at one time vote in favour of……. no more.

PS. Aide—

Best be careful, you don't fall victim to the multi-system organic
disease Myalgic Encephalomyelitis - but then again, how will you know
how, where, who, what - to avoid!

A VICTIM OF YOUR OWN Party's SUCCESS ? BE CAREFUL I WOULDN'T WISH OUR
SON'S SYMPTOMS AND NON-EXISTENT QUALITY OF LIFE ON ANYONE — EVEN ON
THOSE WHO HAVE PERPETUATED IT.

But we do hope you and your bosses sleep well, for the time you have
left in this world---eternity is a long time to shoulder the magnitude
of human suffering you have caused and permitted to flourish, in those
who have been struck down by neurological Myalgic Encephalomyelitis,
while you've been in power.