No.
You do not get to research and write a long article on ME/CFS and not appreciate the difference between chronic fatigue, a symptom of MANY diseases and disorders, and ME.
To present this gaffe in the title,as a headline...
And the stat she lobs at the readers that stuck with me? The incidence comparison with schizophrenia, where she highlights the fact that it is the "same number". She actually highlights it.
Is there good data in here? Yes. I think there is a compelling story in this article.
First, you need to draw the reader in. Chronic fatigue? That's the hook? How many will just turn to the next article, cuz, ho hum, to one extent or another everyone gets tired, so quit whining?
I appreciate authors who tackle this disease. But get it right, at least in the title. Yes. I insist on that.
I know and you make good points. Unfortunately this confused idea of 'the patients won't mind if we say CF' also leads to two other condensing oddities I spotted, ironically in an otherwise acceptable article for the public who don't know what 'CFS' is. (Note I said CFS).
The first problem quoted from the article is this:
For the sake of clarity and consistency with the existing medical literature, this article uses “chronic fatigue.” More on this naming controversy later.
Source:
http://www.theatlantic.com/health/a...gue-patients-push-for-an-elusive-cure/409534/
Well the medical literature (research) does not mention Chronic Fatigue (except psychiatry), it deals with CFS. Psychiatry denies organic CFS or ME (via Chronic Fatigue), so that's a non starter to suggest that for sake of
clarity they need to say 'Chronic Fatigue'. Most peculiar I thought?!
The final error I found was the language of the article is coincidentally copying the NHS CFS website word for word with the following misinformation.
Frustrated, Vastag told the doctor, “I’m pretty sure I have ME.” (The term most
patients, including Vastag,
prefer for their disease is “myalgic encephalomyelitis,” or ME.
Source:
http://www.theatlantic.com/health/a...gue-patients-push-for-an-elusive-cure/409534/
Correction for the journalist here is a must, although it's an easy honest mistake if you don't know what ME or CFS are in isolation of each other.
Patients don't 'prefer' the term ME
if they don't have CFS. Patients are
diagnosed with ME
There is also a set of ME criteria, called ME International Consensus Criteria (ME ICC) which is far more stringent than Fukuda CFS and actually rejects the notion of CFS as ME inside it completely.
So ME is not a name patients prefer. It's a neurological disease (WHO - Circa 1969).
Conversely CFS is a CDC fatigue syndrome, that
doesn't require a single neurological symptom to be present. The UK NHS mirrors the article's statements on their website, and says that doctors say CFS and patients prefer ME- the inference here is the patients are in denial and doctor knows best, so there is friction between the two (which the UK Department of Health - who runs the NHS - actually caused by creating CFS/ME in the first place).
- chronic fatigue syndrome – often used and preferred by doctors as there's little evidence of brain and spinal cord inflammation, which the term ME suggests; ME is also thought to be too specific to cover all the symptoms of the condition
- myalgic encephalomyelitis (ME) – preferred by those who feel CFS is not specific enough and doesn't reflect the severity and different types of fatigue, and implies that fatigue is the only symptom (myalgic encephalopathy is sometimes also used)
Source: NHS Choices, Chronic Fatigue Syndrome:
http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx
This is all fine and dandy if you don't actually know they are 2 different conditions. One is based on Myalgic Encephalomyelitis signs (disease signs) one is based on Chronic Fatigue and 4 or more symptoms = CFS. Or in UK: Chronic Fatigue, PEM and 1 or more symptom.
None of these can even begin to match ME in anyway, with SEID getting better. ME patients don't even report fatigue to begin with, they report PAIN, INFECTION, MUSCLE WEAKNESS etc. None of which are required to have CFS.
Other than that, on CFS it was an article the public might read and judge Americans less harshly by, which isn't hard if they believe their sick friends now housebound have a 'CFS' when actually they face a life crippled by autoimmunity or worse and are told they need CBT GET and PACING to manage it.
Thus even going down the road of CF (Chronic Fatigue) was unwise and medically incorrect and not for 'clarity' reasons at all. I must also add it doesn't help people set up organisations like '
The Chronic Fatigue Initiative' does it? And state they won't be looking at retroviruses either. Now that would be a good story to investigate next.
*What are the 85% positive retroviruses that Dr Lipkin won't mention. HERV's?
*Why is Dr Montoya's Cytokine assay paper blocked that demonstrates
inflammation?
*Why is Dr Lipkin's work not looking at patients with
no inflammation not blocked.
*Do retroviruses cause inflammation? Yes.
*Does ME require inflammation? Yes.
*Do cytokines and chemokines in the blood, suggest brain glial cell activation? Yes.
Imagine a story on that, that isn't a silent response.
