POLL OPEN! Terminology, Definitions, and Criteria

[alex3619]

There was a special panel some years back that looked at this, and came up with a name ... and now I don't even recall what that name was. It was ignored by the powers-that-be though.

 

[Undisclosed]

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

Do you think that Phoenix Rising had any impact on the IOM at all -- we were one of many invited to make a statement. Their agenda was set before any of the organization/individuals made any statements. We asked our members what they wanted us to say and we said it. Other organizations basically chimed in with the same stuff. It was a done deal before anybody was invited to speak there. If you look at the IOM forum, you can follow the events as they unfolded. What have we heard lately from them -- nada -- because it's all being done behind closed doors. If you believe that any of us will benefit from the IOM's machinations, then you are very naive.

 

[Dr.Patient]

@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.

Yes, I am aware of people's efforts! @Sushi said PR does not have one voice, but then there is a 'one voice' statement from PR to IOM on 1/27/2014.

 

[TigerLilea]

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

I'd rather see people put more energy into medical research at this point in time. Then once the research is done we can come up with an appropriate name.

 

[Dr.Patient]

Do you think that Phoenix Rising had any impact on the IOM at all -- we were one of many invited to make a statement. Their agenda was set before any of the organization/individuals made any statements. We asked our members what they wanted us to say and we said it. Other organizations basically chimed in with the same stuff. It was a done deal before anybody was invited to speak there. If you look at the IOM forum, you can follow the events as they unfolded. What have we heard lately from them -- nada -- because it's all being done behind closed doors. If you believe that any of us will benefit from the IOM's machinations, then you are very naive.

The fact that we were given an inlet into it was good. I believe there were patients inputs taken into formulating the ICC criteria. The ICC criteria, in my opinion, are the BEST and very ACCURATELY portray our illness. (It's just the term ME I have a problem with). If the IOM takes the ICC into consideration, then we all can be happy. I don't think we should stop voicing our opinions, even if they don't consider them.

 

[alex3619]

I'd rather see people put more energy into medical research at this point in time. Then once the research is done we can come up with an appropriate name.

The faster we get the research done, the sooner the IOM and P2P deliberations become hopelessly obsolete. Even Nancy Klimas, a panelist, has said the IOM panel is at least a year too premature, the science we need is either still being done or being planned.

 

[Dr.Patient]

There was a special panel some years back that looked at this, and came up with a name ... and now I don't even recall what that name was. It was ignored by the powers-that-be though.

We cannot get an agreement on a name with the few people on this thread, how can we expect an institution to ?

 

[Sushi]

We cannot get an agreement on a name with the few people on this thread, how can we expect an institution to ?

Most of us are agreeing that is would be better to have the science before trying to come up with a new name.

Sushi

 

[Dr.Patient]

This was my intent, but let me rephrase it-

Based on the ICC criteria, A,B,C,D; does anybody have any alternate names to ME, since ME takes into consideration only criteria B, and ignores the compulsory criteria A?
That's it!

 

[TigerLilea]

This was my intent, but let me rephrase it-

Based on the ICC criteria, A,B,C,D; does anybody have any alternate names to ME, since ME takes into consideration only criteria B, and ignores the compulsory criteria A?
That's it!

NO!

 

[SOC]

This was my intent, but let me rephrase it-

Based on the ICC criteria, A,B,C,D; does anybody have any alternate names to ME, since ME takes into consideration only criteria B, and ignores the compulsory criteria A?
That's it!

You seem to be missing the point that just because criteria A is compulsory, that doesn't make it the most critical or most damaging issue in this illness.

We'll know a lot more about the nature of this illness in a couple of years. At that point we may be able to take a better shot at a name that properly represents the illness. Until then, any name is just a placeholder.

 

[Cheesus]

I no longer meet the criteria so I guess I don't have ME anymore. Woopdedoo I'm cured!! Oh wait... I still am unable to leave the house. Damn.

I think you have a point, though. Not fulfilling the criteria doesn't mean you don't have the same dysfunction as others. The fact is that two people could fulfil this criteria and have almost a completely different set of symptoms whilst only sharing post exertional malaise. Conversely, I could have all the same symptoms as someone who does fill the criteria bar perhaps one thing, yet going by this I would have a different illness.

I think the criteria is a useful guide, but it is only a guide. Distinguishing between CFS and ME is useless when a person could fluctuate between the two, as that would mean they are constantly fluctuating from one chronic illness to a completely different chronic illness. In my opinion there are just varying severities of a similar central dysfunction (and a number of different patterns and subsequent dysfunctions that spiral out of that).

 

[Cheesus]

What about... Oh God My Legs Won't Frikken Move And It Feels Like I've Been Hit By A Freight Train itis.

 

[taniaaust1]

When ICC criteria say 'exertion', they do mean even simple activities of daily living can cause this prolonged exhaustion. Not 'exercise' the way it's used by the public.

Yes Im well aware to that. When I was saying exercise, I was refering to what is usually refered as exercise in ME people eg the general daily life stuff of just living.

 

[taniaaust1]

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

OMG DRAGS, where on earth are you coming up with these names, that sounds as bad as CFS. (That is so terrible that I started laughing at the suggestion, sorry I know you were being serious)

 

[taniaaust1]

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 of all you can not lump CFS and ME together, and secondly ME already has a decent name until we know more about it. As far as I know the IOM is going to lump CFS and ME together and that will not get any acceptance among the ME community anyway. They can feel free to name the CFS group thou, they deserve a better name.

 

[taniaaust1]

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

The whole IOM scandal, does not care what we think, they have already shown us that by firstly ignoring our experts over the CCC and not taking that definition on (that was a big consenus thing which got ignored) and secondly by putting a whole heap of non experts on that panel.
................

Im fed up with this illness already having so many different names world wide, why go and invent another prematurely. Is there any other illness out there who already has had so many names?

 

[Cheesus]

First of all you can not lump CFS and ME together, and secondly ME already has a decent name until we know more about it. As far as I know the IOM is going to lump CFS and ME together and that will not get any acceptance among the ME community anyway. They can feel free to name the CFS group thou, they deserve a better name.

I'm curious to know what the difference is betwen CFS and ME? I have heard people say it is severity, but given that ME fluctuates this has never really convinced me as it would suggest someone can change from having one condition to the other.

 

[soofke]

I'm curious to know what the difference is betwen CFS and ME? I have heard people say it is severity, but given that ME fluctuates this has never really convinced me as it would suggest someone can change from having one condition to the other.

If someone would ask me I’d say; ME when virus (also) above the neck, CFS when below, which is a bit cruel for CFS-ers because all those with thyroid probs and gluten allergies and leaky guts would have the lame and insufficient name, we the kinda cool one

 

[Cheesus]

If someone would ask me I’d say; ME when virus (also) above the neck, CFS when below, which is a bit cruel for CFS-ers because all those with thyroid probs and gluten allergies and leaky guts would have the lame and insufficient name, we the kinda cool one

So in you opinion 'ME' is in the central nervous system, whereas 'CFS' is elsewhere?
That's an interesting hypothesis. I'm still not overly convinced. I think in the end we'll find get maybe 4 or 5 distinct subcategories with similar central dysfunctions. In my opinion all the furore over CFS vs ME is pretty much useless because the diagnostic process is simply inadequate. The current distinction between the two appears to be grounded in nothing other than hearsay.

I'm happy to be shown I am wrong if someone can point me to genuine evidence that shows a clear physiological distinction.