Next CFSAC meeting date has been announced for November 8, 2011

[Ember]

The name Chronic Fatigue Syndrome coined by the CDC, is an insult and denigrating. People tell me I am fatigued all the time too, you should get out more and exercise or You look fine to me. I am alone in my suffering. It is critical that this cruel name be changed if we want any advancement and improvement for this illness.

Because of the way CFS is currently coded, it is almost impossible to collect disability. The International World Health Organization has been coding it since 1969, as a neurological disease. The new ICC agrees. When will the US catch up to the rest of the world?

I wonder if anyone picked up on Neilk's reference.

 

[kaffiend]

Thanks to Andrew and Nielk for your testimonies. Really well done!

 

[Jill McLaughlin]

What does this mean? The ME-ICC is for ME not CFS. So the solution is to change the name CFS, which is what she just complained to me about doing or discussing.
I want a diagnosis change not a name change.

Where is her testimony?
She states: "Because of the way CFS is currently coded, it is almost impossible to collect disability. The International World Health Organization has been coding it since 1969, as a neurological disease. "

This is not true. CFS was not "invented" until 1988 and has only been in ICD since the mid 1990's I believe.

Changing the coding and miscoding a fatigue syndrome as neurological will not change anything.

I wonder if anyone picked up on Neilk's reference.

Originally Posted by Nielk
The name Chronic Fatigue Syndrome coined by the CDC, is an insult and denigrating. People tell me I am fatigued all the time too, you should get out more and exercise or You look fine to me. I am alone in my suffering. It is critical that this cruel name be changed if we want any advancement and improvement for this illness.

Because of the way CFS is currently coded, it is almost impossible to collect disability. The International World Health Organization has been coding it since 1969, as a neurological disease. The new ICC agrees. When will the US catch up to the rest of the world?

 

[Ember]

My CFSAC testimony

Mea culpa. Andrew said, "In my opinion, part of this problem could be solved if the name and description were changed according to the International Consensus Criteria."

Was there any response from the Committee?

 

[Jill McLaughlin]

Question for Andrew? The ICC is for ME. Did you want the name ME changed?

Mea culpa. Andrew said, "In my opinion, part of this problem could be solved if the name and description were changed according to the International Consensus Criteria."

Was there any response from the Committee?

 

[Andrew]

Mea culpa. Andrew said, "In my opinion, part of this problem could be solved if the name and description were changed according to the International Consensus Criteria."

Was there any response from the Committee?

I don't know. I read my testimony over the phone and went back to bed.

 

[justinreilly]

Well, I had some tell me it was odd to hear my voice describing what it is like to be a man with this illness. And that was the first time for me. Funny, my heart was racing from being nervous. I was more nervous doing this than the radio interviews I have done.

I think Dr. Lee has learned some lessons this time.

I need to take a closer look at the CDC website again. Glad to hear some changes have occurred. But it sounds like more work needs to be done.

I think of what Dennis Mangan said at the SoK. He said that he noticed the researchers and patients are like a family, maybe a dysfunctional family, but there is a closeness that is not seen among others.

I describe those who go to conferences as "researcher groupies."

And then we have the wise long-time advocates. They are like our grandmothers and grandfathers, full of knowledge and still going strong.

There are many different personalities in our community. We all want the same thing, but we often disagree about how to get there. Seeing the posts here and then hearing your voices, Neik and Andrew, makes me feel even closer to my fellow advocates.

One battle at a time, we are winning.

Tina

Nice post. And thank you everyone who testified!!

Did there end up being any protest, does anyone know?

 

[Dolphin]

Nice post. And thank you everyone who testified!!

Did there end up being any protest, does anyone know?

There was a protest (outside anyway). See short videos at: http://www.youtube.com/user/pokeydna .

 

[Ember]

Those with ME do NOT belong with CFS.

I beg to differ with the separatist take.

I've been diagnosed with CFS, then ME/CFS, and now ME. I identify most with ME, as that is the most homogeneous group. So far however, I still do consider myself to be part of the larger CFS (or preferably ME/CFS) community.

Being Canadian, I have a model for accommodating a distinct society. As part of the ME subgroup, I'm coming to believe that ME patients need a distinct advocacy organization, pushing for ME-ICC research. Otherwise we may continue to be swallowed up in the larger CFS (or ME/CFS) cohort.

 

[Jill McLaughlin]

I don't really see your point. You say you disagree but then say that we need an ME org for ME-ICC research. Wouldn't that be separatist? ME-iCC is NOT for CFS.

ME patients have been abused all along by CFS and the fatigue diagnosis. There is no such thing as ME/CFS, just another made up term that can
mean different things, subject to interpretation, sound familiar?

So I do not want to be part of the CFS community.

I beg to differ with the separatist take.

I've been diagnosed with CFS, then ME/CFS, and now ME. I identify most with ME, as that is the most homogeneous group. So far however, I still do consider myself to be part of the larger CFS (or preferably ME/CFS) community.

Being Canadian, I have a model for accommodating a distinct society. As part of the ME subgroup, I'm coming to believe that ME patients need a distinct advocacy organization, pushing for ME-ICC research. Otherwise we may continue to be swallowed up in the larger CFS (or ME/CFS) cohort.

 

[Jill McLaughlin]

I don't really see your point. You say you disagree but then say that we need an ME org for ME-ICC research. Wouldn't that be separatist? ME-iCC is NOT for CFS.

ME patients have been abused all along by CFS and the fatigue diagnosis. There is no such thing as ME/CFS, just another made up term that can
mean different things, subject to interpretation, sound familiar?

So I do not want to be part of the CFS community.

I beg to differ with the separatist take.

I've been diagnosed with CFS, then ME/CFS, and now ME. I identify most with ME, as that is the most homogeneous group. So far however, I still do consider myself to be part of the larger CFS (or preferably ME/CFS) community.

Being Canadian, I have a model for accommodating a distinct society. As part of the ME subgroup, I'm coming to believe that ME patients need a distinct advocacy organization, pushing for ME-ICC research. Otherwise we may continue to be swallowed up in the larger CFS (or ME/CFS) cohort.

 

[Jill McLaughlin]

This is not about personalities. No we don't all want the same things. "WE" do not want to be part of CFS, or the nonsensical made up ME/CFS, or in PARTICULAR under the CFSAC. This is NOT an ME/CFS committee and they have no right to act as if. ME is not CFS. This is a CFS committee. They made a recommendation which has not passed or been accepted. They need to stick within their mandate.

So you may think you're winning, but would not be so sure.

There are many different personalities in our community. We all want the same thing, but we often disagree about how to get there. Seeing the posts here and then hearing your voices, Neik and Andrew, makes me feel even closer to my fellow advocates.

One battle at a time, we are winning.

Tina

 

[Ember]

I don't really see your point. You say you disagree but then say that we need an ME org for ME-ICC research. Wouldn't that be separatist?

To clarify, I see ME not as separate, but as a distinct group within CFS or ME/CFS. (Quebec, by way of analogy, is a distinct society within Canada.)

Research into ME-ICC will, I believe, be in the best interest of both ME patients and the larger CFS (or ME/CFS) community. But I don't believe that ME/CFS organizations will advocate for it. They will continue to speak for the larger community.

To have a separate advocacy group could be seen as separatist. But I see it rather as a pragmatic necessity for a distinct subgroup.

I do remain sympathetic toward the larger CFS or ME/CFS community (of which I am a part), and I believe that cooperation will work best for all of us.

 

[Jill McLaughlin]

Ember, What they are proposing will eliminate ME as a diagnosis and will be lumped in with
CFS as the same diagnosis. I think someone is giving wrong information. The ME-ICC will be
for naught.

ME should not be a subgroups of a fatigue syndrome, which it is not.

There is no such thing as ME/CFS. CFS and ME/CFS groups do NOT speak for ME (corny but true).

This isn't cooperation it is masochistic to be part of something that has proven to be harmful.

I could be sympathetic but would not be part of something that is completely inappropriate
and will keep us tethered to the same fatigue garbage.

This seems to be used as a selling point with the forced togetherness and unity and one cause slogans
but not buying into it because it isn't. It should be getting as far away as possible.

To clarify, I see ME not as separate, but as a distinct group within CFS or ME/CFS. (Quebec, by way of analogy, is a distinct society within Canada.)

Research into ME-ICC will, I believe, be in the best interest of both ME patients and the larger CFS (or ME/CFS) community. But I don't believe that ME/CFS organizations will advocate for it. They will continue to speak for the larger community.

To have a separate advocacy group could be seen as separatist. But I see it rather as a pragmatic necessity for a distinct subgroup.

I do remain sympathetic toward the larger CFS or ME/CFS community (of which I am a part), and I believe that cooperation will work best for all of us.

 

[kurt]

Jill,
I appreciate what you are saying. In my opinion neither ME nor CFS is adequately defined, we have some type of complicated neuroimmune/endocrine condition with so many systems out of balance that it could be considered to fall in many different categories. Certainly inflammation (ME) and fatigue (CFS) are parts, but neither is an accurate representation of the whole.

Anyway, I agree we need a stronger political presence, but think you have an up-hill battle if you want to separate ME and CFS. This is how people view our condition, as a disease with many names:

From WIKIPEDIA:
Chronic fatigue syndrome (CFS) is the most common name[1] used to designate a significantly debilitating[2] medical disorder or group of disorders[3] generally defined by persistent fatigue accompanied by other specific symptoms for a minimum of six months, not due to ongoing exertion, not substantially relieved by rest, nor caused by other medical conditions.[2] The disorder may also be referred to as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS), chronic fatigue immune dysfunction syndrome (CFIDS), or several other terms. Although classified by the World Health Organization under Diseases of the nervous system,[4] the etiology (cause or origin) of CFS is unknown, and multiple psychological and physiological factors may contribute to the development and maintenance of symptoms.[5][6] There is no diagnostic laboratory test or biomarker for CFS.[2]

The key is really the problem defining the etiology. I believe the CDC initially viewed CFS as a temporary explanation for the outbreaks pending a better understanding which probably they thought would happen quickly.

Just curious, do you think CCC defined CFS and ME patients have different illnesses?

 

[Snow Leopard]

Thanks to Andrew and Nielk for your testimonies. Really well done!

Yes, big thanks to those who participated.

 

[Snow Leopard]

Doubling is nowhere near enough. That would be about $6-12 million, still pocket lint. Fibromyalgia gets that much (~$12m), but no diseases considered serious get that little. MS (barely escaped from "hysterical paralysis) gets $44 million (nowhere near enough; the way they tell if their medicine is working is to get more scans a year later and see whether there is further damage!) Parkinsons get $500 million. AIDS gets more than twice what Parkinsons gets.

Double it every four years for 8-10 years and we'll be in the ballpark in terms of matching the ratio between disability burden and NIH funding of other diseases:

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0016837

Incidentally, I did a similar regression analysis for Australian DALY/MHRC and found that CFS was underfunded by 10-15 times depending on the assumed prevalence. (this was an intercept=0 model, similar to the one in the graph in the above paper.)

Research into CFS/ME is the most underfunded of all medical conditions in most western countries, compared with societal disease burden (and probably economic costs too)!

 

[Ember]

ME should not be a subgroups of a fatigue syndrome, which it is not.

There is no such thing as ME/CFS.

Ultimately, research may prove you right, Jill. But in the meantime, it will be driven by the current definitions. For now, I take CFS to be the illness defined by Fukuda and Reeves, ME/CFS to be the illness defined by the Canadian Consensus Criteria, and ME to be the illness defined by the International Consensus Criteria. (I've been diagnosed with all three, whether or not they exist.)

According to the ICC, ME is a subgroup: the primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion.

In the absence of further research, restating beliefs as facts isn't likely to get us very far. What I hope may help is research using the ME-ICC.

 

[WillowJ]

FWIW, I'm pretty sure that Donna Pickett, who is one of the people in charge of coding, said coding and disease definitions were separate issues. We can straighten out the coding now while we have the opportunity before it's set in stone for the next dozen years or whatever, and keep working on definition and name.

 

[WillowJ]

Double it every four years for 8-10 years and we'll be in the ballpark in terms of matching the ratio between disability burden and NIH funding of other diseases:

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0016837

Incidentally, I did a similar regression analysis for Australian DALY/MHRC and found that CFS was underfunded by 10-15 times depending on the assumed prevalence. (this was an intercept=0 model, similar to the one in the graph in the above paper.)

Research into CFS/ME is the most underfunded of all medical conditions in most western countries, compared with societal disease burden (and probably economic costs too)!

Double and keep doubling -- that I could support. :Retro smile:

Thanks for clearly stating the issue here.