Announcing a survey for meeting with CDC

SOC

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Isn't part of their job to make sure that their field is being correctly funded based on economic cost-benefit?
I don't think so. I think their job includes evaluating the economic impact of the illness as a public health issue, but not the lobbying (or whatever) for funding of research. Somebody else is supposed to use the economic impact data they produce and use it to decide research funding.
 

Tammie

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After letting this sit in the back of my mind for several days, I'm coming to the conclusion that the thing that we can emphasize --
that is within their mandate,
that they can (relatively) easily and quickly accomplish,
that doesn't require massive amounts of funding,
AND that we can monitor with little difficulty,
is NAME CHANGE.

Name change would contribute to:
1) a part of our problem with doctor (mis)education,
2) better access to research funding,
3) better public perception/quality of life improvements
4) easy access to disability services
I absolutely agree with your points; however, I personally still think that using the Candian Criteria is even more important, in that if we don't demand they use good diagnostic criteria, they will continue to grp patients who don't even have CFS in with us and continue to waste time and money and to say that it is a pscyh illness......if true ME/CFS patietns are not being studied and are not the only grp of patients being studied, we are still spinning our wheels in a big way

also using the rt definition can lead to the same thigns that you mentioned, though I do really want to see aname change, too, and if the name chaneg and proper defintion were accomplished together, it would really have an impact
 
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I don't think so. I think their job includes evaluating the economic impact of the illness as a public health issue, but not the lobbying (or whatever) for funding of research. Somebody else is supposed to use the economic impact data they produce and use it to decide research funding.
If that is true, then there is something truly flawed with the structure of their organisation.
 
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Name change would contribute to:
1) a part of our problem with doctor (mis)education,
2) better access to research funding,
3) better public perception/quality of life improvements
4) easy access to disability services
We need to name it after the original doctors. Similar to Guillain–Barr syndrome
ME can be renamed Ramsay syndrome, CFS to Peterson syndrome or similar. I know someone from Dr Leonard Jason's group is doing a history of CFS, perhaps they could come up with a better name along these lines?
 

SOC

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If that is true, then there is something truly flawed with the structure of their organisation.
Why do you say that?

Not that I don't agree that the CDC organization is flawed. ;) I just don't see why the fact that they're not the ones deciding who gets research funding implies that.
 

SOC

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We need to name it after the original doctors. Similar to Guillain–Barr syndrome
ME can be renamed Ramsay syndrome, CFS to Peterson syndrome or similar. I know someone from Dr Leonard Jason's group is doing a history of CFS, perhaps they could come up with a better name along these lines?
Naming after discoverers is out-of-date in science. Now the preference is to name the disease something indicative of the condition itself. It became evident that while naming discoveries after the discoverer was an honor, it got in the way of communication and clarity. This is true across the sciences, not just in medicine.

My personal preference would be something more along the lines of Neuroimmune Disease (per WPI), or Neuro-endrocrin-immune Disorder.
 

SOC

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CDC Mission Statement

The CDC is NOT a medical research facility. It is a Public Health organization.

CDC Mission
Collaborating to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats.
CDC seeks to accomplish its mission by working with partners throughout the nation and the world to
monitor health,
detect and investigate health problems,
conduct research to enhance prevention,
develop and advocate sound public health policies,
implement prevention strategies,
promote healthy behaviors,
foster safe and healthful environments,
provide leadership and training.

Those functions are the backbone of CDC′s mission. Each of CDC′s component organizations undertakes these activities in conducting its specific programs. The steps needed to accomplish this mission are also based on scientific excellence, requiring well-trained public health practitioners and leaders dedicated to high standards of quality and ethical practice.
[my bolding]

Notice the lack of original research, funding for research, lobbying for funding, or almost anything about newly discovered illnesses.

The only mission they have that could be related to a new or mysterious illness is,
detect and investigate health problems
, which they fell flat on their faces on over 25 years ago in Incline Village.

IMO, they have no business in ME/CFS at all until we know enough about it to expect "prevention" and health professional training.