Article: Ch, Ch, Ch, Changes...Myalgic-encephalomyelitis Now and Then: 75 Years of ME

You can view the page at http://forums.phoenixrising.me/content.php?468-Myalgic-encephalomyelitis-Now-and-Then-75-Years-of-ME-CFS-chronic-fatigue-syndrome

 

Honestly, how can you say that ME/CFS obscured the real issue of recognizing ME? ME was added to the term with the idea in the end that the CFS would be dropped and ME (or another suitable term) would be added. It was always a transition term. Since the creation of the Canadian Consensus Criteria and with Rich Carson's "Fair Name Campaign" whose Board included Dr Peterson, Klimas, Cheney, Jason, Komaroff to name a few the IACFS changed its name, many organizations in the US added it to their name and it is now used by the DHHS - vastly increasing its credibility in the research. Rather quickly ME was on the tongues of researchers and patients.

Contrast that with its history beforehand - no integration at all into the research community with ME disappearing from the scientific literature since 1988. My guess is that co-authors of the ICC embraced 'ME' not just because it was the right thing to do but because it was the right time to do it and it was the right time because the term 'ME/CFS' had prepared the ground for it - as was always intended to happen.

I'm not sure who the 'real ME' advocates are but in my opinion the best thing they could have done to advance their cause would have been to think strategically and advance their cause would have been to embrace 'ME/CFS' realizing it was always intended to be a bridge to 'ME" (or another better term). I was part of the Fair Name Campaign and I remember vividly Rich Carson exclaiming his fervent desire for a swift transition to ME.

Cort,

Very well said,(written). The transition stage was necessary in order to have the right timing and back up to accept the name M.E.
A name change for any illness, I would think is hard to accomplish as we have seen for so many years. The form that it came in, with new guidelines by international authorities is very powerful. I just hope that it will be fully accepted by the medical and governmental agencies.

 

Not quite sure how things go with you there Cort, but in my (11) years there has been a constant battle to describe in the absence of a particular pathogen. Ramsey (Royal Free) gave the name Myalgic Encephalomyalitis - think we would all be happy to finally exclude CFS because it has lead to so much warped intervention in the UK and just isn't the whole story. (for the sake of history /CFS only) We must pull together in all of this despite varying predominance of symptoms and not argue names. As we all know this is not some sort of naming game but those trying to put things right.

 

Nielk, this is not a name change.

 

I am quite sure that the ICC authors did it as the right thing to do, in spite of the ME/CFS nonsense and distractions. Because it is the right thing to do medically, scientifically and publicly, so I will give them the credit on this one.

Well, that's the chief thing - they did the right thing - they moved boldly and hopefully they will move everyone with them. Congratulations to the research community for being out in front.

 

ME/CFS makes no sense, diagnostically or even on the public/awareness front. No one knows what it means (as it has no established meaning anywhere).

From a Canadian perspective, this statement makes no historic sense. The clinical definition, diagnostic and treatment protocols for ME/CFS were set out in the CCC. To say that the ICC authors adopted the name ME in spite of the ME/CFS nonsense and distractions is to laud and lampoon some of the same authors. In my opinion, these authors deserve only our gratitude and respect.

I'm happy to hear your congratulations of the research community on this one, Cort. (Though I know you're aware of the important balance between clinicians and researchers on the panel.) Let's look forward to the full acceptance of the ICC!

You say more articles are on the way. Here or elsewhere?

 

Ember, The authors of the ICC did not adopt the name ME, they specifically updated the definition of it. Otherwise creating some new mythical ME/CFS, which has no *established usage or meaning, is absurd and likewise dangerous.

But I agree with Cort, they did the right thing and went against the ME/CFS trend of the US groups and took a much needed bold action. So lets nudge the IACFS in the right direction...

 

From a Canadian perspective, this statement makes no historic sense. The clinical definition, diagnostic and treatment protocols for ME/CFS were set out in the CCC. To say that the ICC authors adopted the name ME in spite of the ME/CFS nonsense and distractions is to laud and lampoon some of the same authors. In my opinion, these authors deserve only our gratitude and respect.

I'm happy to hear your congratulations of the research community on this one, Cort. (Though I know you're aware of the important balance between clinicians and researchers on the panel.) Let's look forward to the full acceptance of the ICC!

You say more articles are on the way. Here or elsewhere?

Good point Ember - lots of clinicians on there - as there needed to be. If you look at the CCC and ICC you can see how many more people he was able to enroll in the effort this time - good news! and he was able to get it in a major journal - more good news.

More articles - I think two more will appear on PR this month on ME and the ICC. This is the 'Month of ME' after all.

 

Not quite sure how things go with you there Cort, but in my (11) years there has been a constant battle to describe in the absence of a particular pathogen. Ramsey (Royal Free) gave the name Myalgic Encephalomyalitis - think we would all be happy to finally exclude CFS because it has lead to so much warped intervention in the UK and just isn't the whole story. (for the sake of history /CFS only) We must pull together in all of this despite varying predominance of symptoms and not argue names. As we all know this is not some sort of naming game. Awfully tired of critics of those who seek to help and signing off.

We -in the land of CFS - would be happy to see that term go away forever. We started it, after all I agree that the chief thing is that we get together to fight for more funding and recognition - pull together so we can make an impact....we've never really done that.

 

Nielk, this is not a name change.

Jill, if you read the ICC paper, the 23 authors specifically state that the name Chronic Fatigue Syndrome does not make sense with the new information that they have now. The name that best describes it is Myalgic Encephalomyelitis. According to this paper, they are changing the name from CFS to M.E. I don't know what else you would call it but, a " name change".
Whether this will be accepted by the CDC, HHS..etc. is a different story. It's too early to tell. I don't think that any of us are prophets to foretell the future.

 

Cort,

Its about time we use ME. Dr. Lapp (my specialist) started using ME/CFS a long time ago. He said he'd gradually drop the CFS. Once the ME consensus document came out, I quit using ME/CFS unless forced to. I'm happy to see this latest article for recognizing ME.

Nancy

 

Neilk, Well the name CFS never made sense but that's a different story!

The paper states: "The scope of this paper is limited to criteria of ME and their application." This is ME criteria. They are defining and describing ME and say that CFS is not a proper or adequate name - for ME. This is not just a name change from CFS to ME.

 

Neilk, Well the name CFS never made sense but that's a different story!

The paper states: "The scope of this paper is limited to criteria of ME and their application." This is ME criteria. They are defining and describing ME and say that CFS is not a proper or adequate name - for ME. This is not just a name change from CFS to ME.

Who said it's only about a name change and who ever said that the name CFS makes sense?
I don't know what your argument is about?

 

Nielk - Today, 07:55 PM

Who said it's only about a name change and who ever said that the name CFS makes sense?
I don't know what your argument is about?


Then you wrote:
"Jill, if you read the ICC paper, the 23 authors specifically state that the name Chronic Fatigue Syndrome does not make sense with the new information that they have now. .... According to this paper, they are changing the name from CFS to M.E. I don't know what else you would call it but, a "name change"."

Nielk - You said that with the new info the name CFS does not make sense (so just reiterated as a snide comment), and that it was a name change.

 

Nielk - Today, 07:55 PM

Who said it's only about a name change and who ever said that the name CFS makes sense?
I don't know what your argument is about?


Then you wrote:
"Jill, if you read the ICC paper, the 23 authors specifically state that the name Chronic Fatigue Syndrome does not make sense with the new information that they have now. .... According to this paper, they are changing the name from CFS to M.E. I don't know what else you would call it but, a "name change"."

Nielk - You said that with the new info the name CFS does not make sense (so just reiterated as a snide comment), and that it was a name change.

Jill,

This is what I wrote to Cort:
"Cort,

Very well said,(written). The transition stage was necessary in order to have the right timing and back up to accept the name M.E.
A name change for any illness, I would think is hard to accomplish as we have seen for so many years. The form that it came in, with new guidelines by international authorities is very powerful. I just hope that it will be fully accepted by the medical and governmental agencies."

I don't know why you have a problem with thi statement but if you do, you picked the wrong person and the wrong day to start up with.

 

Ember, The authors of the ICC did not adopt the name ME, they specifically updated the definition of it. Otherwise creating some new mythical ME/CFS, which has no *established usage or meaning, is absurd and likewise dangerous.

But I agree with Cort, they did the right thing and went against the ME/CFS trend of the US groups and took a much needed bold action. So lets nudge the IACFS in the right direction...

I can't agree with your characterization of events.

The ICC authors write: The Canadian Consensus Criteria were used as a starting point, but significant changes were made. The CCC (opening line) reads: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe systemic, acquired illness that can be debilitating. The ICC authors now write: No other fatiguing disease has 'chronic fatigue' attached to its name e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue except ME/CFS. Their statement is made in support of their adopting (or simply using, if you prefer) ME alone.

ME is clearly not the only definition that is updated here. Some of the same authors who defined ME/CFS in the CCC have now done the right thing, as you put it, with the publication of the ME-ICC. I can't believe they'd agree with you that they took the bold action in spite of the ME/CFS nonsense and distraction. Nor do I believe that they were acting against the ME/CFS trend of the US groups. That version of history seems to me entirely inaccurate and unfair.

The IACFS/ME is already part of the transition that's underway.

 

Nielk, You said it in an open forum. I disagreed. Thats all.

 

Actually it sounds like a deliberate move on their part. ME/CFS has fatigue, which they quite clearly are against. So I would say they would agree that this was against the counterintuitive ME/CFS. The US groups had ME/CFS as their platform and pitched it as Unity to make people accept it as the way forward and were promoting and even advertising it. ME pple were adamantly opposed. So I'm sure it was not a conscious objective but what they did was against what US groups were promoting.

Any other definition can be updated. We kept hearing about an update of the CCC. To my knowledge there is none. This is an ME definition, which is our concern. So that is what matters.

 

Actually it sounds like a deliberate move on their part. ME/CFS has fatigue, which they quite clearly are against. So I would say they would agree that this was against the counterintuitive ME/CFS. The US groups had ME/CFS as their platform and pitched it as Unity to make people accept it as the way forward and were promoting and even advertising it. ME pple were adamantly opposed. So I'm sure it was not a conscious objective but what they did was against what US groups were promoting.

Any other definition can be updated. We kept hearing about an update of the CCC. To my knowledge there is none. This is an ME definition, which is our concern. So that is what matters.

Jill,

Why don't you just come out and say what your "agenda" is instead of beating around the bush.
I cannot make sense of anything you are stating above.

When you say "they" who do you mean?

When you say "ME pple were adamantly opposed" - who are these M.E. pple? and what were they opposed to?

When you say "So I'm sure it was not a conscious objective but what they did was against what US groups were promoting"
Does it have to be an opposition? Can you entertain the fact that this was a modification? an improvement upon? as opposed to opposition?

When you say "This is an ME definition, which is our concern. So that is what matters" - by "our" concern - who is represented here? and what is the concern again?

As far as I know, no one holds the patent on the name ME, yet you talk like you do.

 

Niekl, This is straightforward. ME pple are those with ME who did not want a CFS or ME/CFS dx. The ICC is an ME definition, it is not ME/CFS, which we were opposed to from the beginning. Since others were in favor of and promoting ME/CFS, then it was unfortunately an opposition.

 

Niekl, This is straightforward. ME pple are those with ME who did not want a CFS or ME/CFS dx. The ICC is an ME definition, it is not ME/CFS, which we were opposed to from the beginning. Since others were in favor of and promoting ME/CFS, then it was unfortunately an opposition.

Jill,

Since you are an "ME person", you should be happy with the new ICC calling the disease ME.
Therefore, I don't know what your argument is all about. The ICC agrees with you. Do you have a problem with that?