A hypothetical approach to increasing funding

[ScottTriGuy]

Trauma occurs when an individual experiences an overwhelming event - especially if the individual feels powerless and trapped.
Trauma that is invalidated is deepened (for example, when a child tells a parent they've been sexually molested and the parent doesn't believe them, or worse, blames them, the overall trauma that child experiences will be deepened or worsened even more that the original trauma).

The hypothesis:
As people living with me/fm, we are traumatized because:

• we are living with a chronic illness
• that is multi-system
• that has no biomarker or test for diagnosis
• that is socially isolating
• and physically damaging

These are all characteristics of an overwhelming event and may lead to feelings of powerlessness with no options for escape (support, treatment).

The trauma is deepened because:
The medical system is set up not to empower patients - government and doctors have control of our health (lives) in their hands:

• federal health funders ignore and dismiss our experiences thereby denying us research and treatment
• (some) clinicians ignore and dismiss our physical symptoms thereby denying us treatment
• (some) clinicians mis-diagnose our biological disease as a psychological disorder thereby casting doubt onto our authenticity and subtextually blaming us
• (some) clinicians prescribe harmful 'treatments' like graded exercise therapy - which is physiologically harmful to people with m.e., or CBT which is applying a cognitive/behavioral intervention to a biological disease, which is causing psychological harm in denying the physical manifestations of me/fm

These are all invalidations of our experiences, of our beings and we are physically, emotionally, mentally and socially harmed.

The Potential Remedy:
With that in mind, people with me/fm can be considered a group or 'class' of people that have been neglected and harmed by federal governments, medical institutions, and (some) clinicians.

This class of people may consider launching a class action law suit against the offenders in order to get fair funding for research and stop the harm of mis-diagnosing our biological symptoms as psychological disorders.

A class action lawsuit would garner media attention, highlight the lack of funding and expose the harm of (some) clinicians and institutions. A judgment in favor of the class would allocate damages to individuals and establish research and treatment centers.

If the funders won't listen to the researchers and the patients, maybe they will listen to the lawyers.

Thoughts?

 

[JennyJenny]

[QUOTE="
Thoughts?[/QUOTE]
ACLU

 

[Cort]

Trauma occurs when an individual experiences an overwhelming event - especially if the individual feels powerless and trapped.
Trauma that is invalidated is deepened (for example, when a child tells a parent they've been sexually molested and the parent doesn't believe them, or worse, blames them, the overall trauma that child experiences will be deepened or worsened even more that the original trauma).

The hypothesis:
As people living with me/fm, we are traumatized because:

• we are living with a chronic illness
• that is multi-system
• that has no biomarker or test for diagnosis
• that is socially isolating
• and physically damaging

These are all characteristics of an overwhelming event and may lead to feelings of powerlessness with no options for escape (support, treatment).

The trauma is deepened because:
The medical system is set up not to empower patients - government and doctors have control of our health (lives) in their hands:

• federal health funders ignore and dismiss our experiences thereby denying us research and treatment
• (some) clinicians ignore and dismiss our physical symptoms thereby denying us treatment
• (some) clinicians mis-diagnose our biological disease as a psychological disorder thereby casting doubt onto our authenticity and subtextually blaming us
• (some) clinicians prescribe harmful 'treatments' like graded exercise therapy - which is physiologically harmful to people with m.e., or CBT which is applying a cognitive/behavioral intervention to a biological disease, which is causing psychological harm in denying the physical manifestations of me/fm

These are all invalidations of our experiences, of our beings and we are physically, emotionally, mentally and socially harmed.

The Potential Remedy:
With that in mind, people with me/fm can be considered a group or 'class' of people that have been neglected and harmed by federal governments, medical institutions, and (some) clinicians.

This class of people may consider launching a class action law suit against the offenders in order to get fair funding for research and stop the harm of mis-diagnosing our biological symptoms as psychological disorders.

A class action lawsuit would garner media attention, highlight the lack of funding and expose the harm of (some) clinicians and institutions. A judgment in favor of the class would allocate damages to individuals and establish research and treatment centers.

If the funders won't listen to the researchers and the patients, maybe they will listen to the lawyers.

Thoughts?

I've always liked the idea of a law suit simply to get attention if nothing else. Think of it - a group of ill people launch a class action lawsuit against the NIH because of discrimination.
I LOVE the idea.
Think of all the stats we can gather up - economic losses, prevalence, disability, quality of life, functionality

I'll bet the media would get all over it if we did it right...and that's all we would need....

 

[ScottTriGuy]

Yup, the initial value of the class action lawsuit to patients is that the public shame to NIH may cause change within.

If they produce fair research funding as an initial response, maybe the lawsuit gets dropped.

 

[Snookum96]

I've thought about this too.
One issue is who to include. A lot of people can't find a doctor willing to diagnose.
The ACLU is American, Scott do you know if we have a Canadian equivalent?

 

[ScottTriGuy]

Canadian Civil Liberties Association - from what I gather in a quick perusal is first we have to get a lawyer, specializing in class action law, to take our case, then s/he in turn can approach the CCLA for their support.
https://ccla.org/
The initial definition of the class would be broad - part of the 'action' is that many folks can't get a diagnosis - similar problem with old medical marijuana laws, very few docs would sign the papers coz they didn't want to lose their (or so they said) - I contributed an affidavit toward to case that forced the feds to revise the med mari laws to be more accessible.

As an aside, marijuana is now a well known anti-inflammatory and anti-pain medication - I believe many me/fm folks experience much relief.

 

[Halcyonsf8]

I am in the process of filing a civil suit against a household member in Florida that neglected and abused me. I am a 24 year sufferer of ME/CFS. The Florida Dept of Children and Families was alerted and did NOTHING. After obtaining a copy of the DCF report I read where is said I wasn't even disabled along with a lot of incorrect information. Media attention to this case could foster awareness.

 

[Justin]

Well put @ScottTriGuy is boils down to neglect and harm to induviduals, the economy and peoples families.

Its inexcusable. The IOM report states it all time for drastic measures.