Thursday, March 1, 2012

ME vs CFS: More than just a name

ME vs CFS: More than just a name

ME vs CFS: More than just a name
For the first decade of my illness, I thought ME and CFS were different names for the same thing. I belonged to an online community of people with chronic illnesses, and CFS and ME were always lumped together into the same category. The Brits in the community were usually diagnosed with ME; the Americans 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 inaccurate, trivial sounding name was being slapped on such a serious illness. 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 became very confused. I have a diagnosis of ME, while my American partner was diagnosed with CFS two decades ago. We share many of the same symptoms, neurological abnormalities, and illness patterns. Do we have the same illness?
I started to do my own research, and that’s when I learned what each of these diagnoses truly means.
ME is a very specific neurological disease – ‘myalgic’ meaning ‘muscle pain’, and ‘encephalomyelitis’ meaning ‘inflammation of the brain and spinal cord’. ME is characterised by scientifically measurable damage to the brain stem 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, including ME. It is a wastebasket diagnosis for any illness involving a long period of “medically unexplained fatigue”. (Of course, ‘medically unexplained’ doesn’t mean anything if the correct diagnostic tests have not been performed. Most fatigue can be explained if you look hard enough for its cause.) A significant proportion of people with a CFS diagnosis do indeed have ME, but the CFS criteria are so broad that people with post viral fatigue syndrome, depression, nutrient deficiencies, or even undetected cancers will fall into this category.
The term CFS essentially means: ‘We don’t know what’s wrong with you, and we can’t be bothered to find out. Here’s a label to keep you quiet.’
CFS screws everybody except medical insurance companies, for whom it protects against expensive disability claims. Being diagnosed with CFS is like being thrown in the trash. How many people with treatable illnesses are tossed into the CFS bin, losing years of their lives to an ailment that could be cured? Nobody knows. How many cancer patients become terminally ill, after doctors slap a CFS diagnosis on them and stop looking for what’s actually wrong? Again, nobody knows. How many people with severe depression are left without the right support, after being thrown into the CFS wastebasket? I could go on and on.
Most of all, the term CFS screws people with ME.
When a study is done on ‘CFS patients’, it is entirely possible (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 graded 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 patients.
Worse, the diagnostic criteria for CFS states that symptoms have to be present for six months before a diagnosis can be given. If the brain stem damage in ME patients is caused by a ‘hit and run’ virus (and given the similarities between ME and non-paralytic polio, and the rise of ME coinciding with the distribution of the polio vaccine, it seems likely), then at six months, you are three months beyond the latest date that the virus is still present in the body. ME can be diagnosed in weeks, if the correct tests are carried out. By making ME patients wait six months for a diagnosis, you lose that precious window of time in which researchers could identify the infectious agent that triggers ME, and potentially find a cure. Could anti-viral drugs, prescribed early enough, limit further brain stem damage 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’re not angry about the invention of CFS as a diagnostic wastebasket, you should be. It’s not just the human cost. Even if you’re completely unaffected by CFS or ME, the cost to the state is screwing 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 and more costly to the state.
(Just to muddy things further, in the UK, ‘ME’ has now been tacked onto ‘CFS’ to form ‘ME/CFS’. This is as unhelpful and nonsensical as calling it ‘Parkinson’s/CFS’ or ‘Cancer/CFS’. Now sufferers of myalgic encephalomyelitis are forced to use the term ‘Neuro ME’ to try and differentiate this specific neurological illness from other disorders covered by the woolly ME/CFS criteria. ‘ME’ has become a meaningless acronym.)
I was taken in by this scam for many years. Although my official diagnosis is ME (and was later amended by an infectious diseases specialist to ‘post encephalitic damage caused by a polio vaccination’), I was led to believe that CFS and ME were interchangeable. I always disliked the term ‘CFS’ because it had so little relevance to my illness. Now I know that the problem is far more extensive than an inappropriate name. That’s just the tip of the iceberg. You could call ME ‘Arsewipe Disease’ and it would still be the same illness. The bigger problem is that a distinct, measurable, physiological disease is being lumped together with a vast spectrum of different disorders, that happen to fit a huge, muddy criteria. This is what CFS is, and it is screwing us all.


  1. As a very severe, acute infectious onset ME patient of many decades, I endorse this view. Thank you for posting it Dr Speedy.

  2. Yeah, well we can argue about names for centuries. It's CFS on Sophia Mirza's death certificate. Not M.E. In Black and White. CFS killed Sophia Mirza. There is no mention of M.E.


    The Inquest into the Death of Sophia Mirza


    Today, 13th June 2006, the inquest into the death of Sophia Mirza was held in Brighton Coroners Court, England.

    The cause of death was stated as
    'The verdict was Acute aneuric renal failure due to dehydration arising as a result of CFS'

    Two pathologists could not agree which name to use - CFS, ME or ME/CFS.

    In the end it was stated that CFS is a modern word for ME.

    This is why CFS was used on the death certificate.

    The pathologist also said -
    'ME describes inflammation of the spinal chord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia.'

  4. There are also different definitions of CFS.
    The Original one of which there was Never any proper research done and these very ill people were just slapped with the insulting diagnosis of CFSyndrome which was meant to be a "name place-holder" ONLY, until the Proper research could be done..

    But then the CDC never did any..

    They eventually went on to ReDefine CFS "watering it down" full of psych stuff like you see today and everyone is using THIS definition NOW and STILL ignoring the Original Cohort that is STILL Very sick if they are even alive.. many are dead already...
    So Please make SURE you know of which CFS definition you speak before you start throughing names around. In this case "names Matter" they can and have KILLed people..

  5. This blog has been taken down already.
    The BPS police are getting everywhere.

  6. I so agree with all you wrote. Bravo!!! Thank you. I cannot tell you how upset I am and have been with the CFS name. After 37 years of this horrid nightmare, I cannot believe we're still fighting the basics we were engaged in ages ago.

    I finally started a blog 7 weeks ago and addressed one of the issues, so-called "CFS specialists" and how those things go, indirectly, in a post. Make no some cases I've had incredibly great care. But I saw one rather famous name and I am STILL, three years later, wonder what HE was about and am upset because if he treated me, a person very familiar with all the symptoms, having incredible testing over the decades, etc, and still "mistreated," I wonder what he is doing to those new to this nightmare!
    Whether anyone reads my post remains beyond my care for the most part, as long as people get the message you just so eloquently put it. Thank you!
    (And sorry I put the CFS/ME labels in my posts: it is like pouring salt on a wound each time I do so.)