M.E. V’s “CFS” What you must know…

The following is an unedited copy of a group email from Jodi Bassett (A Hummingbirds Guide to M.E.) 

*please repost widely* *please repost widely* *please repost widely*
*please repost widely* *please repost widely*

PLEASE read this paper if you are a M.E. advocate or sufferer and you use or
support the terms ‘ME/CFS’ or ‘CFS/ME’…

—–

Problems with the use of ‘ME/CFS’ by M.E. advocates (Summary)
By Jodi Bassett, March 2008

Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease
which was formally classified as an organic neurological (CNS) disease in
the World Health Organisation’s International Classification of Diseases in
1969 with the code G.93.3.

M.E. is a distinct, scientifically measurable and testable, acute onset,
organic neurological disease. ‘CFS’ in contrast, is not a distinct disease.

The man-made financially motivated ‘CFS’ definitions describe no distinct
patient group. ‘CFS’ doesn’t exist. The use of the mixed term ‘ME/CFS’ by
some former M.E. advocates (and others) makes no sense at all, but is
unfortunately becoming far more common.

Many of those M.E. advocates who use the term ‘ME/CFS,’ say, (correctly!)
that the distinct neurological disease M.E. and the man-made bogus disease
category of ‘CFS’ are NOT the same.

But they then often also say things like; ‘ME/CFS is a serious disorder
which occurs in epidemic and sporadic forms, is initiated by a virus (most
likely an enterovirus), and is defined by severe fatigue…’ etc. which
incorrectly imply that the name and definition of ‘CFS’ is synonymous with
authentic M.E.

‘ME/CFS’ advocates often (bizarrely) pour scorn on the Wessely school’s use
of the term ‘CFS/ME’ and complain about how ridiculous it is that anyone
could think that ‘ME/CFS’ and ‘CFS/ME’ were the same thing. You also
sometimes read comments like; ‘This recent (M.E.) CFS study showed that
patients had….’ which implies again, that ‘CFS’ is just another name for
M.E.

It’s crazy! You just can’t argue that M.E. and ‘CFS’ are not the same, and
then use the term ‘ME/CFS’ (or ‘ME-CFS’ or ‘CFS/ME’) and expect to be taken
seriously or to get the points across that we desperately need to. Using
these terms CONTRADICTS whatever else you say about M.E. and ‘CFS’ not being
the same. It makes what you are saying completely nonsensical and illogical.

That’s only the start of the problem however.

Why is ‘ME/CFS’ being used so much more often?

It seems like using ‘ME/CFS’ is really just about popularity, very often,
sadly. That it is just about playing both (or all) sides and so keeping the
maximum number of people superficially happy generally, and superficially
happy with the individual advocate or group. These mixed terms are accepted
by many propaganda supporting ‘CFS’ researchers and ‘advocacy’ groups, by
people misdiagnosed with ‘CFS’ who don’t have M.E. as well as by some
genuine neurological M.E. patients. So supporting these vague mixed terms
makes an advocate or advocate group popular with the largest possible number
of patients and patient groups etc. But is that really a good enough reason
to work against the best interests of the patient group (or groups) they
claim to be advocating for?

None of the justifications made by individual advocates or advocacy groups
for using the term ‘ME/CFS’ hold up. These are some of the most common;

a.. The claim that we have to use the term ‘CFS’ (and so ‘ME/CFS’) because
some of the recent research (at least partly) involving M.E. patients has
been done under the name ‘CFS’ is bogus.
Of course we should reference such research that is relevant, but this
could very easily be done by writing a short explanation of the confusion
between M.E. and ‘CFS’ and including this in each article or piece of
research. This is the type of vital basic information that even without the
terminology issues, we need to get out there as a first priority anyway. To
say this notification has to be done with the terminology itself is
ridiculous. Yes the term ‘ME/CFS’ lets you claim some of the relevant to
M.E. ‘CFS’ research, but you also blindly claim the other 95% (or more) of
‘CFS’ research which isn’t relevant to M.E. and which directly harms M.E.
patients (etc.).

b.. The claim that ‘ME/CFS’ is about getting those M.E. patients
misdiagnosed with ‘CFS’ to be able to find information about M.E. also
doesn’t
hold up to scrutiny.
Again, yes, this is something that it is very important that we do, but it
is misleading to suggest that this can only be done using the main
terminology we use. It could be done so simply with a short explanation
included in each text. This way you would also avoid giving patients
misdiagnosed with ‘CFS’ who DON’T have M.E., the mistaken (and harmful) idea
that they do have M.E. and that M.E. and ‘CFS’ are the same, and so on.

c.. The claim that ‘ME/CFS’ is a temporary term, and that eventually the
‘CFS’ part will just drop off and our only chance for change is gradual
change is false.
This exact strategy has been tried and tried again for the last 20 years
and it has failed totally. Trusting that if we compromise ourselves now (by
mixing M.E. and ‘CFS’) that we will be rewarded with something that we want
to happen but which harms the interests of the vested interest group
involved - without any type of force being exerted on our part - is just
fanciful, unfortunately.

d.. The claim that we have to use this term because it is used in the 2003
Canadian ‘ME/CFS’ definition is also bogus.
Yes, specific parts of the paper are relevant to M.E. to some extent and
worth supporting, but this is NOT a pure M.E. definition, it is at best a
mix of M.E. and ‘CFS’ and does not select a 100% M.E. patient group. For
each good part of the paper there is also another scientifically
questionable and psychologically biased part. It reinforces some of the most
harmful myths about M.E. It does not justify the use of ‘ME/CFS’ by genuine
M.E. advocates.

For every problem ‘ME/CFS’ supposedly solves, it creates many more far worse
problems, and these same primary problems can all be solved simply in other
ways that have NO HUGE DOWNSIDES!

So who does benefit from Myalgic Encephalomyelitis being mixed with ‘CFS’?

That is the real question we should all be asking. The answer of course is,
yet again, powerful financial vested interest groups such as the medical
insurance industry, the vaccine industry, the government and others who are
directly saving themselves millions or even billions of dollars through this
‘CFS’ and ‘ME/CFS’ obfuscation.

It is hardly a coincidence that Professor Simon Wessely - the most powerful
and influential of the group of doctors who have made themselves the tools
of insurance companies - is the person credited with inventing the mixed
term ‘CFS/ME.’ The mixing of M.E. and ‘CFS’ in this way serves vested
interest groups well.

This is why so many of the very worst government reports (and so on) in the
UK, Australia and the Netherlands which talk about patients as if they were
mildly ill malingerers who could easily improve if not recover from their
‘fatigue’ if only they could be convinced to try CBT or GET, and so on, (a)
often use terms such as ‘CFS/ME’ or ‘ME/CFS’ in the titles and throughout
and (b) very often mix in some of the facts about M.E. (ie. symptoms,
history, severity/disability etc.) with bogus information about ‘CFS’ while
of course the entirety of the all important CONCLUSIONS given (ie.
aetiology, psychological status, improvement of symptoms, response to
treatments and recovery rates) are drawn exclusively from non-M.E. ‘CFS’
patient groups.

‘ME/CFS’ and ‘CFS/ME’ lets these groups have it both ways. They get to
continue happily with their unscientific and unethical ‘CFS’ obfuscation
agenda, and they get to do so with far less opposition from the patients
they’re harming, or even with the support of some of these patient groups.
This is why articles and studies which mix together facts about M.E. and
‘CFS’ are even more dangerous and harmful in many ways than pure ‘CFS’ ones.

The ‘ME/CFS’ concept: (a) is confusing, (b) is illogical, (c) strongly
reinforces the same misinformation which is the cause of our problem (ie.
that M.E. and ‘CFS’ are the same), (d) benefits the interests of the same
vested interest groups which benefit from ‘CFS’ in the exact same way, (e)
reinforces the position of vested interest groups that ‘CFS’ is a real
disease and that their bogus ‘CFS’ work/research is scientifically valid,
(f) does nothing to counter the real problems which are the definitions of
‘CFS’ and the involvement of vested interest groups in what should be a
purely scientific discussion, (g) greatly reduces the credibility of M.E. by
aligning it with the bogus disease category of ‘CFS,’ (h) lessens the impact
of the legitimate facts about M.E., (i) can work to cut M.E. off from its 70
year history, previous case studies, research and definition, and its
correct WHO classification and so on; just as ‘CFS’ does, (j) harms M.E.
patients and those misdiagnosed with ‘CFS’ who don’t have M.E. in the same
way ‘CFS’ does, and (k) holds back the fight for justice and recognition of
authentic neurological Myalgic Encephalomyelitis immeasurably.

The mixing of M.E. and ‘CFS’ was invented by these vested interest groups
and it is a tool they use to good effect and as much as possible. Clearly,
legitimate M.E. advocates using THE SAME TWISTED AND OBSFUCATING STRATEGY is
not a good idea and is only going to further their interests instead of
ours.

What can M.E. advocates learn from how other diseases have gained
recognition and justice finally?

Us using ‘ME/CFS’ now is as short-sighted as it would have been for HIV and
AIDS activists years ago, when the name was “Gay Related Immune Deficiency
Syndrome’ or GRIDS, to have pushed for the acceptance of ‘HIV/GRIDS’ or
‘AIDS/GRIDS.’ Or if multiple sclerosis advocates had pushed for the
acceptance of MS/Hysterical paralysis years ago instead of just MS. People
pushing now for the so-called ‘compromise’ of ‘ME/CFS’ is just the same -
just as unwise - except that ‘ME/CFS’ is far, far worse.

This is because our problem isn’t just that the term ‘CFS’ is offensive and
inaccurate but that the term ‘CFS’ is inextricably linked, and synonymous
with the DEFINITIONS of ‘CFS’ and that this fictional ‘CFS’ disease
construct is, along with the unethical involvement of groups with financial
vested interests in what should be a purely scientific discussion, the cause
of our entire problem!

If the aforementioned groups had not chosen to fight hard for what was
scientifically correct and right, instead of settling for the same sort of
unnecessary hijacking of reality that ‘ME/CFS’ advocates are suggesting.
then who knows how much this may have held these patient groups back, or for
how many years or decades their positive outcomes may have been delayed
because of it?

Successful advocacy campaigns have achieved success in the past through
guts, determination, a willingness to fight for the facts and what is
scientifically right, refusing to compromise (or sell) themselves and their
integrity. We have to do the same if we want the same type of success.

This isn’t just about terminology, it is about definitions

The terminology is often used interchangeably, incorrectly and confusingly.
But the DEFINITIONS of M.E. and ‘CFS’ are very different and distinct, and
it is the definitions of each of these terms which is of primary importance.
Having said that, very often, advocates that have compromised with the
terminology have also compromised and warped the definition of M.E. too.

So very often, where there’s smoke there’s fire!

When people use the term ‘ME/CFS’ it should set alarm bells ringing for you
to be very wary that they haven’t also ‘compromised’ and warped the
definition of M.E. and the known scientific facts about M.E. and that they
don’t now consider people with Fibromyalgia, various post-viral fatigue
syndromes or Lyme disease as ‘ME/CFS’ patients or as so-called ‘ME/CFS
sub-groups’ or support any other of the ‘CFS’ myths as relating to M.E.

Most often when the term ‘ME/CFS’ is used, the text refers to a bizarre mix
of facts relating to both M.E. and ‘CFS’ or instead purely facts relating to
any of the various bogus ‘CFS’ definitions. (The same applies to the terms
‘CFS/ME,’ ‘CFIDS’ ‘and Myalgic ‘Encephalopathy’ etc.)

In conclusion…

‘ME/CFS’ just doesn’t make sense. Why weaken our position so much for no
good reason? - because make no mistake, the unadulterated facts about M.E.
(the outbreaks of M.E. and the links to polio outbreaks (and the polio
vaccine), how much we know about M.E. and how much we knew even before 1988,
who is behind ‘CFS’ and why, and all the needless deaths and abuse knowingly
caused by the ‘CFS’ scam) are a far more compelling true story than any
wishy-washy and contradictory tales defending ‘CFS’ or ‘ME/CFS.’

We have to learn to see past the SUPERFICIAL and be far more critical about
which information (and advocates and groups) we accept as being
scientifically sound, relevant to us, and in our best interests too. The
fact that an article might merely mention some facts about M.E. along with a
lot of ‘CFS’ propaganda, or say that ‘CFS’ or ‘ME/CFS’ is ‘real’ or ‘is not
psychological’ or merely mention some physical abnormalities or implicate
various viruses in some way, or use the term ‘ME/CFS’ or ‘CFS/ME’ is nowhere
near good enough.

(Most of the very worst articles and reports do many or even all of these
things!)

Many supporters of ‘ME/CFS’ have a tie to the big vested interest groups
involved, while others are motivated by their own vested personal interests.
Undoubtedly, some M.E. patients are simply too severely ill and disabled to
do more than very basic reading or to engage in any type of critical
thinking and so have been persuaded to support ‘ME/CFS’ by other advocates
they’ve trusted to steer them in the right direction - and have had that
trust cruelly abused. There are no doubt many different reasons for the rise
in ‘ME/CFS.’ But regardless of the different motivations, the results will
be just the same unfortunately. That’s the problem.

If you open your mind and forget for a minute about how commonly ‘ME/CFS’ is
used and about all the justifications you’ve been given for it - and look at
it logically - it really is hard to come to any other conclusion than that
‘ME/CFS’ can only impede our fight for justice and recognition.

The time for hoping for non-confrontational gradual change, compromising
ourselves for our abusers and trying endlessly to work within the completely
bogus ‘CFS’ framework ON THEIR TERMS has to be over. 20 years is enough.

The definition of INSANITY is doing the same thing over and over and
expecting a different result.

It is time that we fought for authentic Myalgic Encephalomyelitis in name,
definition and World Health Organization classification, without compromise.
It is also time we all fought for the bogus financially motivated disease
category of ‘CFS’ to be completely abandoned - without compromise - for the
sake of every patient group involved; M.E. patients and all those
misdiagnosed with ‘CFS’ who do not have M.E. alike.

Let’s do exactly what these vested interest groups are hoping we WON’T do!

——-

For more information please see the far more detailed full-length text
(which also includes some excellent quotes from many other M.E. advocates
and experts on this topic) at:
http://www.ahummingbirdsguide.com/problemswithmecfs.htm

See also: The Terminology and Definitions Explained and What is Myalgic
Encephalomyelitis?

To download or print copies of this text in Word or PDF formats, click on
the link above.

A final plea: It is never to late for YOU to abandon ‘ME/CFS’ and to start
fighting for M.E. in name and definition. We need you fighting hard and
strong for M.E., yesterday! Any type of blame etc. for the past is
irrelevant and unhelpful. What matters is now, and stopping things becoming
even worse. The need is so urgent.

Permission is given for these documents to be freely redistributed by e-mail
or in print for any not-for-profit purpose provided that the entire text
(including this notice and the author’s attribution) is reproduced in full
and without alteration. Please redistribute this text widely.

If you would like to link to this paper, please do so by using the links to
my site provided rather than a reposting of this text on a third-party
website as only the version on my site has live links and will continue to
be updated.

Thank you to all those M.E. advocates who offered valuable criticism and
suggestions as I was writing this paper.

Best wishes everyone,
Jodi Bassett
–
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
–
‘Any disease process that has major criteria, of excluding all other disease
processes, is simply not a disease at all; it doesn’t exist. The CFS
definitions were written in such a manner that CFS becomes like a desert
mirage: The closer you approach, the faster it disappears.’ Dr Byron Hyde
M.D. 2006

The current confusion over the name in the US is that CFS, the fabricated
condition that somehow became officially synonymous with the real disease
Myalgic Encephalomyelitis, is to be cunningly renamed Myalgic
Encephalopathy. The problem is that both names share the initials ME, and
since Myalgic Encephalopathy will retain the terribly misleading CFS
criteria this name is nothing more than a clever diversion to draw our
attention away from the real issues. John Anderson, M.E. advocate
The entire concept of a “New Name” is wrong. There is no need for a “new
name” for an “old falsehood”. There already IS a correct name, Myalgic
Encephalomyelitis with a correct ICD code. We need the correct name and the
proper definition, not a new face on an old lie that still functions to
obscure and deny the reality of Myalgic Encephalomyelitis. We need to
educate ourselves, families, doctors, social service people, politicians,
journalists, etc about the existing disease Myalgic Encephalomyelitis. Not
fall into yet another ploy of those who have hidden the truth. M. Beck, M.E.
patient since 1983

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