POLL OPEN! Terminology, Definitions, and Criteria

[alex3619]

There is a whole section of this forum devoted to the IOM fiasco and the P2P, pathways to prevention. There are also facebook pages devoted to fighting both the IOM and the P2P.

The IOM and P2P process are "evidence" based, where the most likely admissible evidence is skewed, incomplete, and subject to huge bias. At least in the IOM case we have a few experts on the panel, people who know a lot about this illness. The P2P panel contains no experts.

http://forums.phoenixrising.me/index.php?forums/institute-of-medicine-iom-government-contract.114/

 

[alex3619]

Effective ATP supplementation is not possible. In the course of a day the body makes many times your body weight in ATP. Its made, used, recycled, in a never ending parade of energy. If it ever stops you are dead.

There can be problems from substrate depletion, including AMP. There are problems in regenerating it, as we know. The solution is to find out how to get the body to make more, it cannot be supplemented with any effect.

If there is a critical shortage of AMP, then various strategies can be used to boost it. Ribose is used for this reason.

 

[Dr.Patient]

other terms for consideration-
DRAG - Delayed Recovery Asthenia Gravis
DRAS - Delayed Recovery Asthenia Syndrome
DRAGS- as above

 

[TigerLilea]

other terms for consideration-
DRAG - Delayed Recovery Asthenia Gravis
DRAS - Delayed Recovery Asthenia Syndrome
DRAGS- as above

That sounds even worse than CFS.

 

[Dr.Patient]

The question I want to ask is- if and when the time comes to rename this illness, will our 10,000-member strong, largest support group in the world be ready? Or are we still uncertain, and divided, and laying in the bed murmuring every-name-is-wrong-but-I-don't-know-what-to-call-it-ting?

 

[Sushi]

The question I want to ask is- if and when the time comes to rename this illness, will our 10,000-member strong, largest support group in the world be ready? Or are we still uncertain, and divided, and laying in the bed murmuring every-name-is-wrong-but-I-don't-know-what-to-call-it-ting?

First, Phoenix Rising is very diverse. It does not have, nor is it intended to have, one voice. It is not primarily an advocacy group but rather a forum for discussion and support.

And, even if it had "one voice," how would you propose that it use that voice? And why would any governmental agency listen? Every advocacy group in the world has been working to change the name for years--some with "very big guns" behind them.

If someone gives us another silly name, they will look very silly themselves when, hopefully soon, research reveals the true pathogenesis of this illness.

Sushi

 

[TigerLilea]

The question I want to ask is- if and when the time comes to rename this illness, will our 10,000-member strong, largest support group in the world be ready? Or are we still uncertain, and divided, and laying in the bed murmuring every-name-is-wrong-but-I-don't-know-what-to-call-it-ting?

Until medical science can figure out once and for all what this illness actually is, how can we possibly come up with a new name for it that will truely fit the illness?? I don't quite understand your obsession with renaming ME/CFS as it is impossible to do at present, and, honestly at this point in time, a complete waste of time.

 

[alex3619]

Until medical science can figure out once and for all what this illness actually is, how can we possibly come up with a new name for it that will truely fit the illness?? I don't quite understand your obsession with renaming ME/CFS as it is impossible to do at present, and, honestly at this point in time, a complete waste of time.

An old blog of mine on this point:
http://forums.phoenixrising.me/index.php?entries/musical-labels.1160/
http://forums.phoenixrising.me/index.php?entries/musical-labels-part-two.1161/

What I was saying was needed is starting to happen with some of the research collaborations out there, including at Stanford.

 

[Gingergrrl]

The specialist I just saw said he prefers to call it "Viral re-activation disease caused by immune impairment."

ETA: Not that this should be an official name but that it is so much more comprehensive and not derogatory like CFS.

 

[Dr.Patient]

As a physician, I have a strong feeling that IOM will change the name ME, because it is inaccurate. As a patient, I want to make sure that my illness is represented accurately, and not given another 'benign' name. There are inlets in all agencies and committees where patients can give input. We, as a group, I believe, will have an opportunity to voice our opinion.

 

[Dr.Patient]

An old blog of mine on this point:
http://forums.phoenixrising.me/index.php?entries/musical-labels.1160/
http://forums.phoenixrising.me/index.php?entries/musical-labels-part-two.1161/

What I was saying was needed is starting to happen with some of the research collaborations out there, including at Stanford.

Thank you @alex3619 , will read these posts.

 

[Undisclosed]

As a physician, I have a strong feeling that IOM will change the name ME, because it is inaccurate. As a patient, I want to make sure that my illness is represented accurately, and not given another 'benign' name. There are inlets in all agencies and committees where patients can give input. We, as a group, I believe, will have an opportunity to voice our opinion.

If you have a chance to investigate the IOM, you will see they have stripped patients of having any voice whatsoever. If they do any name change it will be something ridiculous like Multi-system something or other. We have been having this name conversation for years and really no consensus can be reached until it is better understood.

A name "DRAGS" would be horrible -- do we need any more jokes about tired people dragging their sorry behinds around?

 

[Dr.Patient]

In other words, we do nothing? How can a disease like this have no input from patients?

 

[Dr.Patient]

If you have a chance to investigate the IOM, you will see they have stripped patients of having any voice whatsoever. If they do any name change it will be something ridiculous like Multi-system something or other. We have been having this name conversation for years and really no consensus can be reached until it is better understood.

A name "DRAGS" would be horrible -- do we need any more jokes about tired people dragging their sorry behinds around?

Did the stripping happen before or after PR's statement to the IOM on 1/27/2014?

 

[Sushi]

In other words, we do nothing? How can a disease like this have no input from patients?

No input from patients! Look at our history--we have talked, we have petitioned, we have sent video testimonies from our beds, we have lobbied--for years. Some of us have traveled countless times to government meetings to speak up and tell our stories.

You may just be joining this patient group and trying to find your voice, but please read our history of advocacy.

No input??

Sushi

 

[alex3619]

CFSAC, the Chronic Fatigue Syndrome Advisory Committee has been making recommendations for a long time. They are typically ignored or the recommendations are misrepresented.

 

[Dr.Patient]

No input from patients! Look at our history--we have talked, we have petitioned, we have sent video testimonies from our beds, we have lobbied--for years. Some of us have traveled countless times to government meetings to speak up and tell our stories.

You may just be joining this patient group and trying to find your voice, but please read our history of advocacy.

No input??

Sushi

So, we have done things except suggesting some names for this illness, or have they been ignored as well? This is the only thing I want to know.

 

[alex3619]

Did the stripping happen before or after PR's statement to the IOM on 1/27/2014?

Input was limited in the design. PR input, or any other input, was intentionally limited.

 

[Gingergrrl]

@Dr.Patient you should look at Jennie Spotila's CFS blog called Occupy CFS and you will see all the amazing advocacy that is being done/attempted.

 

[Sushi]

So, we have done things except suggesting some names for this illness, or have they been ignored as well? This is the only thing I want to know.

We have suggested, our doctors have suggested, researchers have suggested...we have been ignored.

Sushi