This is the time of the death of all orthodoxies.
Greg Crowhurst 10/03/2009
“The wrong side is where those gather to whose advantage it is to resist revolution.”
Colin Morris (1968) Include Me
Out p. 63
I open an email early yesterday morning
and two things happened all at once. A little bird told me off
for implying in my latest article – Sound Familiar – that ME is
heterogeneous , at the same time my wife staggered into the room, all
bent over, unable to stand unsupported, needing my assistance
to help her to be sick .
Gosh.
Courage, says Jon Nicol, in his incredibly
uplifting piece on the internet is: “to remember that the worse
critics will tell you only what you want to hear. The best critics are
the honest ones.” www.musesmuse.com/00000508.
Yes, it takes courage to listen and learn.
The more I listened to what they had to say, the more I am convinced
that the brave severe ME sufferer that emailed me is absolutely right.
I have, in fact, been declaring that
ME is heterogeneous since 2005 when I published an article : “Understanding
Severe Myalgic Encephalomyelitis “ in the Nursing Standard.
I could not have been more explicit : “The disease is heterogeneous
(composed of different elements) and it is not clear whether ME/CFS
refers to a single condition or several distinct diseases that are bracketed
together because of the similarity of their clinical appearance.”
Too right – I stand by that statement,
for it is still the prevailing orthodoxy – as far as I can make it
out. Take Natalie Boulton’s extraordinary introduction
to ME in Invest in ME’s just published book “Lost Voices.”
I know of no better overview of the current medical and political
issues in ME.
The reader , almost effortlessly , is
shown how ME has a “very clear and thoroughly documented clinical
history”, how ME is “properly described as an encephalitis
associated with up-regulation of pro-inflammatory immune responses with
down regulation of suppressor cytokines (Hooper2006) “how ME can
be caused by “different viruses, bacteria and chemical toxins”
and how potential sub-groups of ME have now been discovered
; “ there were marked differences between subtypes.. some of the
subtypes had very poor mental health, others had a large degree of bodily
pain, others a very small one, others a very good physical function,
others very poor. Some people had gastrointestinal problems, where others
did not; they had more prominent neurological symptoms, sore throat,
headache etc.(Kerr 2008)”
So okay – am I technically wrong to
use the word “heterogeneous” ? Clearly not –
but I am not so sure about it anymore.
“This is the time of the death of all orthodoxies and the destruction of all temples” declared Morris (1968), as well as the “destruction of all neat pigeon holes, all tidy explanations and lucid blueprints.”
The burning issue is this : to what extent
does our orthodoxy play right into the destructive hands of the
psychiatric lobby ? Indeed to what extent has the doctrine of
heterogeneity, that I quote so unthinkingly, and perhaps wrongly, in
ME, been dictated to or imposed upon an increasingly baffled patient
group by the psychiatric lobby ?
For example, despite a damning critique
of the CDC and Oxford Criteria ( apparently : “The new, revised
and influential 2005 CDC Empirical ME/CFS definition, which identifies
an even broader range of patients, has criteria which can even include
people physically capable of running a marathon ! Boulton 2008)
earlier in Lost Voices, it is striking how Dr Kerr’s research
definition of distinct subgroups is based upon those self same CDC
criteria.
Yes, I know it is also about funding
issues. But….
What is truth ? Descartes said all we
can reply upon ultimately is our own experience. My experience
is that my wife was diagnosed with severe ME by Dr Betty Dowsett, back
in 1997, who told us that my wife was extremely ill and continues to
be, because of an eneterovirus.
Indeed before it was called “ME”,
the disease was called “a-typical or posterior polio” and the early
pioneers were in doubt, just as Dr Spurr is today, that “Enteroviruses…are
the cause of Myalgic Encephalomyelitis. (Boulton 2008) ” The eneterovirus
genus includes Polio, Coxsackie A&B, Echoviruses and E71; you do
mess about with it.
Sadly the role of enteroviruses in ME
“has gone largely unrecognised for many years. (Boulton 2008)
Well, it doesn’t take a genius to figure out why that might be, given
the shenanigans of McEvedy and Beard , the subsequent involvement
of the dreaded psychiatric lobby back in the 1970’s and the Thatcherite/
New Labour multi-billion dollar stitch up, now coming horribly apart.
What has struck us, often forcefully
over the years, is how our different our experience of ME is to most
sufferers that we read about or ever so rarely come into contact with
and yet how similar it is to those most severely affected, whom we never
actually meet but have formed some very intimate bonds with.
To us, it is the severely affected who
are the true ME sufferers. Sadly these are precisely the ones who are
most excluded from research – hang on, I mean these are the ones that
nobody I know off is researching right now, these are the ones
most excluded from local patient group involvement , from any
kind of service or effective advocacy.
These are the ones who actually die when
exposed to CBT and GET.
These are the ones whose only constant
is ongoing, dreadful physical suffering without end.
That is our truth and my eyes have been
opened .
Plucking up the courage to
break the rules, to speak heresy, to face excommunication, I declare
here and now my instinctive opposition to sub-grouping; where
is it going to get us and at what point is it going to stop
: at 10, 20 or 100 subgroups ???
The goal posts keep getting wider,
and all the time the psychiatric lobby is hooting and hollering right
outside our window !
Of course I know many people are suffering
right now from bacterial infections , from organochlorines, from pesticides,
from insecticides and other toxins, that can lead to terrible, to tragic
multisystem , inflammatory diseases.
At the end of the day, though, who does
it benefit, apart from the medical insurance industry, to lump
all these diseases together and call them “ME” ?
ME, dare I say it, always was and it
always will be caused by an enterovirus. End of story. Enteroviral
ME is “perhaps the largest, most deadly and most difficult to treat
subtype of physical illness covered by ME/CFS definitions” (Boulton
2008).
If we are going to get anywhere : shouldn’t
the word “subtype” be removed urgently from that sentence above
?
If we are going to start making a difference
and relieving suffering: shouldn’t ME be defined categorically,
as it originally was, as an enteroviral disease ? To hell with all
those notions of “chronic fatigue” that have so deliberately
muddied the waters.
The best , if not the only hope
for true ME sufferers surely, is to honour the work of
Richardson , Parish , Dowsett, Ramsay and focus all our attention on
continuing the journey that they began , so rudely interrupted these
many years, as Dr Chia is now doing .
EvME.
Or are we only playing word games ?