"Somatisation" rules OK ..?
"The years during which thousands of research papers and media articles were written, and much research money wasted, purporting to explain away a life-destroying neurological disease with discussions of faulty illness beliefs, stress, school phobia, personality disorders, miracle cures etc. must now be consigned to the pile of faulty research which has so dominated Medical Research Council research policy toward ME.STATEMENT by INVEST in ME WPI RESEARCHERS DISCOVER RETROVIRAL LINK TO CHRONIC FATIGUE SYNDROME http://www.investinme.org/Article-325%20WPI%20Statement%20October%202009.htm
"Chronic fatigue syndrome" is over, except maybe in Witchita, in Macon County, Ga. and in Bill Reeves' head.
History is shifting. The pundits, the people who are paid to ask why, will finally ask the questions they should have asked twenty-five years ago: why medicine is so obtuse, its practitioners so willfully ignorant. How could our government and the governments of other nations dismiss and then ignore millions who suffered from “An infectious disease of the brain,” as Hilary Koprowski of the Wistar Institute called it publicly in 1992. Koprowski was an expert in neurological diseases—he knew one when he saw one.
Word spreads fast these days and secrets are hard to keep, especially secrets as fascinating as this one. Science was forced to move up their publication date, originally set for October 16th, due to the rumors and gossip on Internet chatrooms, blogs and websites that began two weeks ago. The news was spreading virally, if you will. With over a million Americans sick, this news was never going to be secret for long.
Let’s make sure this horrific chapter in medical history is not forgotten. The years of our lives during which thousands of research papers were written by psychiatrists or wanna-be psychiatrists purporting to explain away a life-destroying disease with discussions of personality disorders, exercise and activity phobia, malingering, hysteria, stress, sexual abuse, school phobia, Type A behavior, attention-seeking behavior, and any other kind of behavior, must be respected, the papers saved for posterity. Princeton English professor Elaine Showalter’s book equating this disease with fantasies of alien abduction probably deserves its own shelf in this pantheon of the grotesque. And, rest in peace—if you can—Stephen Straus, father of the movement. All these works will be examined, in time, by researchers who seek to understand the human capacity for delusion, ignorance and greed.
Sometimes, music is enough."
...You would think so wouldn't you ? However you just hve to read Wallace Sampson's unbelievable article to seee how deeply ingrained the medical prejudice towards ME sufferers still is ; here is an extract :
"....... A signal finding of CFS people is a solidified lack of insight, and resistance to introspection and to pursuing psychotherapy or psychological investigation. Psychotropic drugs are generally unable to produce relief or a sense of help. This characteristic has made a diagnosis of underlying depression uncertain, and psychological approaches unsuccessful. But the lack of insight and the surface hostility to medical approaches cause a standoff between the affected and the medical system. Affected people drift easily into aberrant sectarian systems and methods, often claiming dramatic, though temporary results from them. Although most psychological approaches meet with resistance, some success is reported with cognitive behavioral therapy, perceived as non-threatening.
CFS uniformly spontaneously resolves over time. According to CDC, almost all cases are resolved by three years, although there are many of longer record. If anyone has ever died with CFS, I’ve not heard of it. Nor have there been complications or sequelae....."..... two names on the (XMRV) news releases and the report caught my eye. The major research organization publicizing the discovery was the Whittemore-Peterson Institute for Molecular Biology. Reno is not far from Incline Village and the name D. Peterson – that turned out to be Daniel Peterson, the second physician in the original Incline report, along with Paul Cheney. Over twenty years of searching for a cause of a phenomenon (an infectious epidemic) determined not to have occurred – and the search continues? I could not help but take notice. And who is Whittemore? He is a real estate developer in Reno who supplied the first $1.4 million for the new research institute to be at the University of Nevada Reno’s medical school, to be devoted to investigating neuro-humoral systems. I suspected some family connection to CFS so looked through the releases and found a note that his daughter, 26, is…a sufferer from CFS. None of this detracts directly from the weight of the experimental findings, but it’s just unsettling."
A response by MalcolmHooperon 15 Oct 2009 to Sampson :
The term CFS is not 100 years old it was introduced in 1988 against the wishes of the sick patients and some physicians who were treating people with ME, myalgic encephalomyelitis. Somatisation transfers the responsiblity for the disease to the patient and excludes him/her from any serious consideration of their illness. Somatisation has a long and much discredited history since it offered ‘explanations’ of illnesses like diabetes, Parkinson’s disease and multiple sclerosis before the physiological bases of these illnesses were identified. Somatisation is the last resort for those who will not think more deeply and collect data to help understand an illness. It gets difficult patients off the physicians list and reduces the need for any engagement with them.
The term ME has been included in the WHO international classification of diseases, ICD-10, since 1969 under neurological illnesses chapter G 93.3. ME identifies muscle pain with inflammation of the brain and spinal cord and is a clear and meaningful clinical definition. The recent Canadian Consensus fills out this definition with an abundance of clinical signs to help any compassionate physician engage with this illness. Please reada and use it.
Over 50 years of dedicated research by Dr John Richardson provides very strong evidence for an enteroviral related illness that is confirmed by the recent studies of Dr John Chia. There is compelling evidence that other rviruses may play a part partcularly those of the herpes family. Some 4000 papers addressing the biological basis of ME have provided definitive biological evidence for this complex chronic multi-system illness.
Please read them and do not belittle sick patients by the use of terms like somatisation.
' a signal finding in cfs people is a solidfied lack of insight and resistance to introspection and to pursuing psychotherapy and psychological investigation 'ReplyDelete
how arrogant and insulting - when you are bedbound, housebound for months /years / decades - you and your carers have no choice but to deal with your life and circumstances as they are each and every day, after day after day - gruelling, relentless. no hiding from life or reality.
when you can't work / go out/ socialise/ pursue hobbies and interests / listen to music /read a book / hold a conversation/ make a phone call, etc etc etc - and when days, hours , weeks, months, years pass one after the other into endless grey oblivion - there is plenty of introspection (when you can actually think.)
there is no hiding from yourself or your illness or the way it impacts every aspect of your existence and those close to you - no escape.
this kind of claptrap makes me seethe. it dishonours and belittles the reality of thousands of very ill people and their carers across the globe.
resistant to psychological intervention? - for a physical illness, for physical symptoms that are recorded and proven by sound scientific research. when we are only offered g.e.t. and c.b.t - g.e.t. which has been shown time and time again to be harmful - ask those who have tried it for pete's sake! g.e.t for people who are unable to move due to intense pain, due to paralysis, g.e.t. for people whose muscle stamina is measured in minutes or seconds or non-existant,..... these idiots have no idea how people with severe m.e. actually have to live!
c.b.t. - for many who can't even hold a train of thought or speak! how patronising, how insulting, how stupid!
ask people with parkinsons, or a.l.s. or m.s. or cancer or any other serious illness if they would accept only c.b.t. and g.e.t as treatment - there would be an outcry.