Posted on February 27, 2012 by The M.E. Closet
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For the first decade of my illness, I thought ME and CFS were different nam=
es for the same thing. I belonged to an online community of people with chr=
onic illnesses, and CFS and ME were always lumped together into the same ca=
tegory. The Brits in the community were usually diagnosed with ME; the Amer=
icans with CFS. I assumed that CFS was the American term for ME.
When the term CFS began to be adopted in the UK, I was angry that such an i=
naccurate, trivial sounding name was being slapped on such a serious illnes=
s. I still, however, believed that ME and CFS were one and the same.
Then I started hearing that ME and CFS are two different things, and I beca=
me very confused. I have a diagnosis of ME, while my American partner was d=
iagnosed with CFS two decades ago. We share many of the same symptoms and i=
llness patterns. Do we have the same illness?
I started to do my own research, and that=E2=80=99s when I learned what eac=
h of these diagnoses truly means.
ME is a very specific neurological disease =E2=80=93 =E2=80=98myalgic=E2=80=
=99 meaning =E2=80=98muscle pain=E2=80=99, and =E2=80=98encephalomyelitis=
=E2=80=99 meaning =E2=80=98inflammation of the brain and spinal cord=E2=80=
=99. ME is characterised by scientifically measurable damage to the brain s=
tem initiated by a viral infection. It has many similarities to both MS and=
non-paralytic polio.
CFS is a term coined in the USA, which covers a whole spectrum of disorders=
. It is a wastebasket diagnosis for any illness involving a long period of =
=E2=80=9Cmedically unexplained fatigue=E2=80=9D. (Of course, =E2=80=98medic=
ally unexplained=E2=80=99 doesn=E2=80=99t mean anything if the correct diag=
nostic tests have not been performed.) A proportion of people with a CFS di=
agnosis, such as my partner, do indeed have ME, but the CFS criteria are so=
broad that people with post viral fatigue syndrome, depression, nutrient d=
eficiencies, or even undetected cancers will fall into this category.
The term CFS essentially means: =E2=80=98We don=E2=80=99t know what=E2=80=
=99s wrong with you, and we can=E2=80=99t be bothered to find out. Here=E2=
=80=99s a label to keep you quiet.=E2=80=99
CFS screws everybody except medical insurance companies, for whom it protec=
ts against expensive disability claims. How many people with treatable illn=
esses are tossed into the CFS category, losing years of their lives to an a=
ilment that could be cured? Nobody knows. How many cancer patients become t=
erminally ill, after doctors slap a CFS diagnosis on them and stop looking =
for what=E2=80=99s actually wrong? Again, nobody knows. How many people wit=
h depression are left without the right support, after being thrown into th=
e CFS wastebasket? I could go on and on.
Most of all, the term CFS screws people with ME.
When a study is done on =E2=80=98CFS patients=E2=80=99, it is entirely poss=
ible (and likely) that not a single patient in that study actually has ME. =
However, the results are then applied to ME as if the two were synonymous, =
often with devastating consequences. For example, a researcher could cherry=
-pick people with depression from the CFS wastebasket, treat them with grad=
ed exercise therapy (GET), get good results, and then declare exercise as a=
viable treatment for ME. GET might be a valid treatment for depression or =
post-viral fatigue, but it can cause severe and permanent damage to ME pati=
ents.
Worse, the diagnostic criteria for CFS states that symptoms have to be pres=
ent for six months before a diagnosis can be given. If the brain stem damag=
e in ME patients is caused by a =E2=80=98hit and run=E2=80=99 virus (and gi=
ven the similarities between ME and non-paralytic polio, and the rise of ME=
coinciding with the distribution of the polio vaccine, it seems likely), t=
hen at six months, you are three months beyond the latest date that the vir=
us is still present in the body. ME can be diagnosed in weeks, if the corre=
ct tests are carried out. By making ME patients wait six months for a diagn=
osis, you lose that precious window of time in which researchers could iden=
tify the infectious agent that triggers ME, and potentially find a cure. Co=
uld anti-viral drugs, prescribed early enough, limit further brain stem dam=
age and give ME patients a better quality of life? As long as the six month=
rule is adhered to, we will never know.
If you=E2=80=99re not angry about the invention of CFS as a diagnostic wast=
ebasket, you should be. It=E2=80=99s not just the human cost. Even if you=
=E2=80=99re completely unaffected by CFS or ME, the cost to the state is sc=
rewing you, too. Your tax money is paying for pseudo research that is of no=
real benefit to patients, and that could ultimately make patients sicker a=
nd more costly to the state.
(Just to muddy things further, in the UK, =E2=80=98ME=E2=80=99 has now been=
tacked onto =E2=80=98CFS=E2=80=99 to form =E2=80=98ME/CFS=E2=80=99. This i=
s as unhelpful and nonsensical as calling it =E2=80=98Parkinson=E2=80=99s/C=
FS=E2=80=99 or =E2=80=98Cancer/CFS=E2=80=99. Now genuine ME sufferers are f=
orced to use the term =E2=80=98Neuro ME=E2=80=99 to try and differentiate t=
his specific neurological illness from other disorders covered by the wooll=
y ME/CFS criteria.)
I was taken in by the CFS scam for many years. Although my official diagnos=
is is ME (and was later amended by an infectious diseases specialist to =E2=
=80=98post encephalitic damage caused by a polio vaccination=E2=80=99), I w=
as led to believe that the two terms were interchangeable. I always dislike=
d the term =E2=80=98CFS=E2=80=99 because it had so little relevance to my i=
llness. Now I know that the problem is far more extensive than an inappropr=
iate name. That=E2=80=99s just the tip of the iceberg. You could call ME =
=E2=80=98Arsewipe Disease=E2=80=99 and it would still be the same illness. =
The bigger problem is that a distinct, measurable, physical disease is bein=
g lumped together with a vast spectrum of different disorders that happen t=
o fit a huge, muddy criteria. This is what CFS is, and it is screwing us al=
l.
Filed under Uncategorized and tagged cfs, cfs scam, me, me/cfs, media, misd=
iagnosis, misinformation, neuro me |=09 Leave a comment
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