Chart Shows Low Chronic Fatigue Syndrome Funding - High Disability

Cort

Founder of Health Rising and Phoenix Rising
Staff member
From Brian Vastag

This is a chart of funding vs disability adjusted years. Note that ME/CFS is above average in disability adjusted years but is easily at the bottom of funding (no surprise there.)

(I don't see fibromyalgia???)

 

KaLee

New Member
Hi Cort,

Could you please explain how "disability adjusted life-years" was calculated. What is the significance of this number? Thanks.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hi Cort,

Could you please explain how "disability adjusted life-years" was calculated. What is the significance of this number? Thanks.
Wikipedia can do it better than me...I think of it as productive years lost.

I am trying to get the paper the chart was in...

The disability-adjusted life year (DALY) is a measure of overall disease burden, expressed as the number of years lost due to ill-health, disability or early death. It was developed in the 1990s as a way of comparing the overall health and life expectancy of different countries.

The DALY is becoming increasingly common in the field of public health and health impact assessment (HIA). It "extends the concept of potential years of life lost due to premature death...to include equivalent years of 'healthy' life lost by virtue of being in states of poor health or disability."[2] In so doing, mortality and morbidity are combined into a single, common metric
.
Looking at the burden of disease via DALYs can reveal surprising things about a population's health. For example, the 1990 WHO report[citation needed] indicated that 5 of the 10 leading causes of disability were psychiatric conditions. Psychiatric and neurologic conditions account for 28% of all years lived with disability, but only 1.4% of all deaths and 1.1% of years of life lost. Thus, psychiatric disorders, while traditionally not regarded as a major epidemiological problem, are shown by consideration of disability years to have a huge impact on populations.

The Years Lived with Disability (YLD) component measures the burden of living with a disability.

DALYs are calculated by taking the sum of these two components:[3]

The DALY relies on an acceptance that the most appropriate measure of the effects of chronic illness is time, both time lost due to premature death and time spent disabled by disease. One DALY, therefore, is equal to one year of healthy life lost.

How much a medical condition affects a person is called the disability weight (DW). This is determined by disease or disability and does not vary with age. Tables have been created of thousands of diseases and disabilities, ranging from Alzheimer's disease to loss of finger, with the disability weight meant to indicate the level of disability that result from the specific condition.
 

KweenPita

Active Member
I guess Fibromyalgia doesn't count as a real disease. As my health provider informed me several weeks ago I take more Zanaflex then she does and she has MS! I felt like saying and Bitch, you're still able to work, and what does our diagnosis have to do with Tea in China? Is my diagnosis lesser than thou? If we're getting into pissing contests, I don't even have to unzip!


I didn't because I went to Pain Specialist for Acupuncture a week later and she said wow your back muscles are really knotted up. I told her what Dr MS said. Pain Specialist said Did she examine you. I said Hell no. My muscles were so tight they pushed the acupuncture needles out.

I, sometimes get so tired of fighting uphill, when encountering new physicians who may or may not take my symptoms and history seriously. I really don't want to put in the effort of educating them. I believe my diagnosis is wrong and lazy, too. But I believe it's their problem, not my lack of concrete symptoms, but their limited investment, knowledge and technology.

I am just tired of Fibromyalgia being the bastard illness of lunatics, drug seekers and hypochondriacs. You would think people like me who can't fake 70/40BP, losing consciousness, sometimes accompanied with seizures, muscle spasms so bad they push out acupuncture needles, measured inflammation and measurable low immunities. You would think after doing this shit since 1991, plus more concrete evidence, just because they don't have a valid name for it, because it really goes beyond their paradigms, at least I could get some respect? I said well name it "we don't know what the eff you have disease inflammation of unknown origin", suits me, dumbass!

Angry much, and thanks for leaving us of the death curve, guess it's not fatal or not taken seriously enough by doctors. I am guessing latter. Just saying what at lot of us feel. Didn't even have to unzip.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I guess Fibromyalgia doesn't count as a real disease. As my health provider informed me several weeks ago I take more Zanaflex then she does and she has MS! I felt like saying and Bitch, you're still able to work, and what does our diagnosis have to do with Tea in China? Is my diagnosis lesser than thou? If we're getting into pissing contests, I don't even have to unzip!


I didn't because I went to Pain Specialist for Acupuncture a week later and she said wow your back muscles are really knotted up. I told her what Dr MS said. Pain Specialist said Did she examine you. I said Hell no. My muscles were so tight they pushed the acupuncture needles out.

I, sometimes get so tired of fighting uphill, when encountering new physicians who may or may not take my symptoms and history seriously. I really don't want to put in the effort of educating them. I believe my diagnosis is wrong and lazy, too. But I believe it's their problem, not my lack of concrete symptoms, but their limited investment, knowledge and technology.

I am just tired of Fibromyalgia being the bastard illness of lunatics, drug seekers and hypochondriacs. You would think people like me who can't fake 70/40BP, losing consciousness, sometimes accompanied with seizures, muscle spasms so bad they push out acupuncture needles, measured inflammation and measurable low immunities. You would think after doing this shit since 1991, plus more concrete evidence, just because they don't have a valid name for it, because it really goes beyond their paradigms, at least I could get some respect? I said well name it "we don't know what the eff you have disease inflammation of unknown origin", suits me, dumbass!

Angry much, and thanks for leaving us of the death curve, guess it's not fatal or not taken seriously enough by doctors. I am guessing latter. Just saying what at lot of us feel. Didn't even have to unzip.
Whew!

Great rant!

We should publish it somewhere.
 

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