First Draft/First Round of Legislation

[fresh_eyes]

How about something like:

Whereas persons with Unexplained Illnesses are frequently subjected to forms of treatment that cause them bodily harm, and have no legal recourse in such situations.

(Thinking CBT/GET here)

 

[fresh_eyes]

Whereas the incidence of Unexplained Illnesses is increasing worldwide, and the need for research into the mechanism of these Illnesses is becoming extremely urgent.

Whereas there is research suggesting that many Unexplained Illnesses may be associated with infectious agents, that may endanger public health via the blood supply.

Whereas, treating Unexplained illnesses with due seriousness, through legislation, research, and funding, will enable governments to protect the health of their populations.

(Who knew I could enjoy trying to speak Legalese? )

 

[gracenote]

whereas got stuck in my brain

Whereas the difficulty getting diagnosed and finding appropriate treatment for these Unexplained Illnesses causes undue financial hardship while patients are shunted from one practitioner to another getting inadequate care and having to pay out-of-pocket in an attempt to find a diagnosis and gain minimal relief from debilitating symptoms.

Whereas the length of time and frustrated attempts to receive the designation of "disabled" for these Unexplained illnesses for the purposes of medical insurance and social security disability benefits, which remains a gauntlet of denials and unnecessary disqualifications, causes further financial hardship, delay in treatment that might slow the progression of the illness, and unnecessary vexation.

Whereas lack of legal, financial, medical and social support for persons with Unexplained Illnesses constitutes discrimination in all realms of their lives and disallows the application of the American's with Disability Act to apply to said persons.

Hey Levi, whereas got stuck in my brain. It turns out that I can be good with big words but don't know by the end of the sentence if said words add up to my intended purpose. I must say, though, they're just as understandable as what I read in contracts. I'll let you sort it all out. That's what you're getting the big bucks, I mean the big thanks, for.

Must move on. Don't like legalese. No more whereas.

 

[fresh_eyes]

Nice work, Gracenote!

or, wait...Whereas Gracenote has made an important and meaningful contribution to the formulation and implementation of the Resolution on the Rights of People with Unexplained Illnesses....

 

[gracenote]

duly noted

Nice work, Gracenote!

or, wait...Whereas Gracenote has made an important and meaningful contribution to the formulation and implementation of the Resolution on the Rights of People with Unexplained Illnesses....

Ha ha ha ha ha. Whereas fresheyes' compliment has been duly noted.

 

[MEKoan]

Whereas Koan is incredibly impressed by the efforts on this thread!

Whereas I was just thinking that this is the first time I have belonged to a forum I would actually direct my doctor to look at.

You guys make me look good!

 

[jspotila]

Clarification

If I read correctly, the CAA is taking on working with us on the resolution?

Let me clarify what I said in an earlier post. I said, "Just chiming in to say I've captured the suggested resolution and will pass on to the Association."

I am passing this suggestion and accompanying draft on to the Association. The Chairman cannot make a unilateral decision about whether the Association will work on a resolution like this, or any other piece of proposed legislation.

Levi mentioned that he used the resolution on FGM as the beginning of the draft. I am very curious about the kind of resources it took to pass the FGM resolution.

 

[sarahg]

Whereas, money is spent on misguided and incorrect treatments for unexplained illness, as well as ignoring possible treatments which will lead to lower cost over time, contributes to ever rising medical costs and a burden on the medical system.

That's not well worded, but an important thought.

 

[gracenote]

What Would Wanda Do?

We need Wanda of CFSAC. Wanda would know. What Would Wanda Do?

 

[blackbird]

Whereas all the flowers gone?

 

[fresh_eyes]

Yeah, though - Wanda. WWWD.

 

[_Kim_]

Whereas all the flowers gone?

...Long time passing

 

[fresh_eyes]

Hey, Levi - any news on this?

 

[justinreilly]

ME/CFIDS instead of "unexplained illness"?

FWIW- my two cents:
I don't like to use the terms "unexplained illness" or "CFS". I feel it's just playing into our oppressors to use their purposefully misleading language. Of course, with thousands of articles in peer reviewed medical journals showing significant physical pathology we do have some explanation of the disease. We have roughly the same amount of 'explanation' as many other diseases which are not termed 'unexplained'. Obviously, they use the term 'unexplained' to make it seem like we are crazy- 'medically unexplained' is a synonym for somatoform in the psychiatric literature which itself just a revised name for hysteria.

 

[fresh_eyes]

Hi Justin, welcome to the forums. Do you have suggestions for how you would approach this?

In a recent article by Komaroff et al, they used the term "disease of uncertain pathogenesis", which struck me as perhaps a better term for use here.

 

[justinreilly]

Unexplained Illness

That being said- I do agree with the resolution as applied to unexplained illness; i.e. illnesses that are truly unexplained such as ME was back in 1984 (but not now) should not automatically be deemed mental illness.

also, I think "barbarous" probably applies more to genital mutilation than our situation. maybe something like "unconscionable" or "unscientific" or "unreasonable"?

 

[Advocate]

That being said- I do agree with the resolution as applied to unexplained illness; i.e. illnesses that are truly unexplained such as ME was back in 1984 (but not now) should not automatically be deemed mental illness.

also, I think "barbarous" probably applies more to genital mutilation than our situation. maybe something like "unconscionable" or "unscientific" or "unreasonable"?

This discussion between you and Levi (and others) is like a breath of fresh air. I hope you will continue.

 

[Advocate]

IN THE HOUSE OF REPRESENTATIVES

January 7, 2010

Hon Rep Reevy Wessley of Texas introduced the following joint resolution;
which was referred to the (choose appropriate government Health agency) and American Medical Association

_________________________________________________________________

JOINT RESOLUTION



Denouncing the practices of marginalization and medical abuse of medical patients with unexplained illness, mis-diagnosing of organic illness as functional or mental disease, creation of illness classifications which lend a presumption of patient insanity rather than a presumption of sanity, expressing the sense of Congress that protection, recognition, and equality of patients with unexplained illness is crucial to achieving a just, moral and peaceful society, and for other constructive purposes.

I'm re-reading this string. Has anyone contacted Wessley in support of his resolution? Does anyone know why he did this? Where it stands?

I realize I might find the answer as I re-read, but if no one has contacted him I will be able to do so in a couple of weeks.

 

[jspotila]

I'm re-reading this string. Has anyone contacted Wessley in support of his resolution? Does anyone know why he did this? Where it stands?

I realize I might find the answer as I re-read, but if no one has contacted him I will be able to do so in a couple of weeks.

I am confused. I thought "Rep Reevy Wessley" was a fictional person and that Levi presented this draft resolution as a starting place for the idea?

 

[fresh_eyes]

I'm re-reading this string. Has anyone contacted Wessley in support of his resolution? Does anyone know why he did this? Where it stands?

I realize I might find the answer as I re-read, but if no one has contacted him I will be able to do so in a couple of weeks.

JS is right, Adv - he's fictional. But I love this idea, and have been pestering Levi will get a final draft drawn up after the holidays.