ME and Ophelia

Friday, March 12, 2004

Official umbrella for CF/ME/PVFS

In the UK, Chronic Fatigue Syndrome (CFS) is officialdom's umbrella term for Chronic Fatigue (CF), Myalgic Encephalomyelitis (ME) and Post Viral Fatigue Sydrome (PVFS).

CF and ME/PVFS are two separate conditions. In America, ME/PVFS is known as Chronic Fatigue Immune Dysfunction Sydrome (CFIDS).

For many adults and children suffering from ME, their illness started too slowly for onset to be pinpointed in a laboratory to a period of viral infection. In my case, because the onset of severe ME happened following a flu-like viral infection - that came and went and showed up in laboratory tests - the diagnosis, after six months of blood tests and debilitating illness, was confirmed as ME/PVFS.

Yesterday morning, I got upset over a comment, left by someone called Noah, at Joi Ito's in response to a post about a meeting with Nathan Grey and Michael Mitchell of the American Cancer Society. Here is a copy of Noah's comment, and my response:

Noah's comment: Here's an example of a disease-specific support site for victims of a rare disease: It uses a BBS format, rather than a blog format; in most cases BBS or forum software is probably more appropriate than blog software, especially since blogs don't lend themselves to continuing discussions, as comments fade off into the ether as the blog rolls down.

One problem with many disease victim/caregiver sites is their tendency to veer off into crackpot cures, conspiracy theories about how the medical profession and the pharmaceutical industry is suppressing treatments, "alternative medicine," rumors, and the like. Actually, an even bigger problem is the way complete diseases that are non-existent and bogus get traction and take on a life of their own, like chronic fatigue syndrome and its ilk.

My response: Ref Noah's comment above: *..Actually, an even bigger problem is the way complete diseases that are non-existent and bogus get traction and take on a life of their own, like chronic fatigue syndrome and its ilk.*

Noah, In future, I suggest you check your facts and be more thoughtful about what you communicate. Your comment is insulting to medical and health/care professionals, a countless number of patients around the world and millions of chronically ill and profoundly disabled children and adults suffering chronic fatigue syndrome (aka CFS/CIFDS/ME/PVFS). Shame on you.

Your comment is especially cruel and insensitive because not only don't know what you are talking but you feel free to publish such ignorant statements (for whose benefit, I cannot imagine) without any sense of care, understanding or compassion. Your wicked comment made me cry. Uncaring and thoughtless people like you, making harmful ignorant comments, cause much hurt. Here's wishing you the best of health for the rest of your life.
_ _ _

By Dr Betty Dowsett - Britain's leading ME specialist

Excerpt: "There are actually 30 well documented causes of ‘chronic fatigue’. To say that ME is a ‘subset’ of CFS is just as ridiculous as to say it is a ‘subset’ of diabetes or Japanese B encephalitis or one of the manifestly absurd psychiatric diagnosis, such as, ‘personality disorder’ or ‘somatisation’.

ME is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile."

# posted by Ingrid J. Jones @ 3/12/2004
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