Tuesday, March 10, 2009

Sound Familiar ?
Greg Crowhurst 8 March 2009
Permission to Repost

Its cause remains unknown. There is no known cure. It develops differently in each person and women are more likely to develop the disease than men.
Diagnosis is dependent upon the elimination of other physical causes.

The only way to be sure a person has the disease is to examine their brain after death.

Patients cannot fully recover from the disease. They can be helped, especially if the disease is discovered early enough.

It is a disease that affects millions around the world and there are huge issues with NICE.

Sound familiar ?

No, it is not ME, it is Alzheimers.

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It is a chronic disease of the central nervous system. It leaves distinct layers of scar tissue in the brain, yet it is a fairly unknown and complex disease.

There is no known direct cause of the disease.

Diagnosis takes months of testing and the ruling out of other physical causes.
There is no single direct test for this disease.

There is no cure either. Treatment plans are highly individualised for each person.

There is no known way to prevent the onset of the disease.

It affects millions around the world.

Sound familiar? No it is not ME, it is Multiple Sclerosis.

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In its severe state it is particularly frustrating to care for, partly because it is heterogeneous. The genetic and environmental elements that may cause the disease are still poorly understood.

No it is not ME, it is Asthma.

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For many years doctors thought that Irritable Bowel Syndrome was a psychiatric rather than a physical disorder. Just as they still do in ME.

As Stephen Ralph asks: how many times have we seen a psychiatrist or a psychiatric study describe "CFS/ME" as a "poorly understood illness?" (2008
http://www.meaction uk.org.uk/ Why_the_CISSD_ Project_MUST_ Fail.html)

Yet ME is only one among countless poorly understood illness in the world.
Here's just a few at random (references available upon request):

Breast Cancer is still poorly understood.

The mechanisms behind the "eczema itch" are complex and still poorly understood.

Endometriosis is still poorly understood and its cause is still unknown.

Obesity's connection to Cardiovascular Disease is complex and still remains poorly understood.

Osteoarthritis is still a poorly understood disease, that has little to with wear and tear. There is still no cure.

Airport malaria is still a poorly understood disease.

Neurocysticercosis : cystic lesions on the brain, is a poorly understood disease.

Why women develop heart disease is still poorly understood. It is still a mystery, for example, why younger woman are still more likely to die from a heart attack than older woman.

Chronic Prostatitis Syndrome is a common, but still poorly understood condition.

Pulmonary-renal syndrome is still a poorly understood clinicopathologic condition .

Severe Acute Respiratory Syndrome (SARS), is still a poorly understood disease, despite being classified by the WHO in 2003 as a global threat to health .

Insomnia is still poorly understood by the medical profession.

Crohn's Disease and Ulcerative Colitis: are still poorly understood.

Calciphylaxis, a complication of end-stage renal disease is still a poorly understood clinical syndrome.

Kawasaki disease, which involves the skin, mouth and lymph nodes is a poorly understood disease, despite being studied since World War II.

What is so tragic is that NONE of the poorly understood diseases listed above cite psychiatric rehabilitation techniques as their first-line treatment interventions, as they do in ME.

People above are suffering, often terribly, but at least they taken relatively seriously; what we have to deal with is off the scale, and all because "in the
1970s certain psychiatrists became involved (with ME,) notably McEvedy and Beard, who in a paper with no scientific merit whatever, dismissed ME as mass hysteria (see: BMJ 1970:1:7-11). "Marshall E, Williams M, Vade Mecum http://www.meaction uk.org.uk/ Vade_MEcum. htm

Will we ever know just how many deaths, how many endless hours of ongoing suffering, how many broken hopes and dreams that has led to?

Me, I'm just screaming.

(Greg Crowhurst is the husband and carer of his wife, Linda Crowhurst, who has severe ME. Thanks for writing this, Greg!)

1 comment:

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