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Justin's Written Comments for IoM Panel First Meeting

Nielk

Senior Member
Messages
6,970
Where is the logic in demanding an ME/CFS definition and an ME label?
I never understood the ME/CFS term. Which disease has two different names? Is it because they equate the two? Is it because they can't make up their minds which One to pick? Is it a multiple choice?

It's like saying this subject of naming the disease is too controversial, so we leave it up to choice. Is the disease a hybrid?

I think that The CCC used the name ME/CFS because at that time, they did not feel that ME will be accepted. When the time came for the ICC, they felt that now the timing was right for ME to be accepted.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Where is the logic in demanding an ME/CFS definition and an ME label?

I think I read somewhere on PR here that the CFS attached to the definition was merely out of recognition that this is how it is referred to in the US otherwise the definition would have been simply ME.
Edit: I see Nielk addressed that question.
 

golden

Senior Member
Messages
1,831
I have Dr. Hyde's book and have read it twice. I think he's great. He has a different view of ME from the general consensus among the experts of what ME is. I am not expert enough to say who is right.

He didn't sign the 50 expert letter.

Regardless of his viewpoint, out of political necessity, I think we really need to support the 50 expert letter which demands CCC. Sticking together as a united front as much as possible is essential for us to win this battle and this war.

Thanks for relating Dr.Hydes position in all this for me.

I appreciate that.

Its inconceivable to me that the 50 'experts' have nothing to do with Dr.Hyde and his 'experts'.
 

Ember

Senior Member
Messages
2,115

Ember

Senior Member
Messages
2,115
Again, maybe I misunderstand but I don't think it's the CCC definition that is transitional but the name.
From "Myalgic Encephalomyelits/Chronic Fatigue Syndrome Clinical Working Case Definition and Treatment Protocols" (CCC):
An Expert Subcommittee of Health Canada established the Terms of Reference, and selected an Expert Medical Consensus Panel representing treating physicians, faculty and researchers. A Consensus Workshop was held on March 30 to April 1, 2001 to culminate the review process and establish consensus for a clinical working case definition, diagnostic protocols and treatment protocols.... Throughout this paper, "myalgic encephalomyelitis" and "chronic fatigue syndrome" are used interchangeably and this illness is referred to as "ME/CFS."
How could HHS or the IOM change the name of the CCC?
 

Snowdrop

Rebel without a biscuit
Messages
2,933
@Ember My bad. I thought you were saying that about the name ME/CFS not the CCC. That is what I was referring to in my comment. That my understanding was that ME/CFS the CFS was added as provisional. I had nothing at all to say about HHS or IOM they have nothing whatsoever to do with it.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Adopt the Canadian Consensus Criteria and the Term "ME"
Where is the logic in demanding an ME/CFS definition and an ME label?

I think this explains the logic:
As Dr. Carruthers points out, the Canadian Definition has been found not to join but to separate ME and CFS:
The results of Jason et al’s studies have confirmed that the Canadian Definition of ME/CFS had clearly separated cases who have ME (fatigue of bio-pathological or natural origin, arising out of a pathological causal structure present in the world apart from the mind that is observing it) from those who have CFS (which includes the minority of the specific natural kinds we are calling ME plus a majority of fatigue kinds that are secondary to other diseases, plus parts of the normal homeostatic activity-rest cycle designed by evolution, plus fatigue kinds constructed by the re-presentational observing/thinking and thus dualistic model-making mind) (emphasis added).http://investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf

Last year, the International Consensus Panel expressed its view that the hybrid term ME/CFS has become a source of confusion. “Unfortunately, the name ‘CFS’ and its hybrids ‘ME/CFS’ and ‘CFS/ME’ have been used to refer to both ME and general chronic fatigue.” Marj van de Sande, co-editor of both the CCC and the ICC, explained that the CCC document originally bore the name “myalgic encephalomyelitis,” but that its name was changed to ME/CFS in order to increase recognition among American patients:
The draft of the Canadian Consensus Criteria (CCC) used the name “myalgic encephalomyelitis” (ME). However, we changed it to ME/CFS because a member of the panel felt that some American patients were not familiar with the name ‘ME’. At the time we did the CCC, we didn’t have plans to do another definition in the future. In retrospect, it did serve as a good transition period.

That explains the logic.

You might now say that these opinions have been superseded, by more recent opinions, as quoted below. But there is a lack of consistency:
With the CCC almost ten years old, the International Consensus Panel recommends that those patients diagnosed using the CCC and not fulfilling the ICC should remain now in the more encompassing CFS classification:
Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification (http://hetalternatief.org/ICC primer 2012.pdf ).


Also, of course, you recently questioned whether Fukuda CFS with post-exertional malaise might be a closer description of 'ME' than of 'CFS'. If that's the case then it seems logical to use the 'ME' term for CCC.


Personally though, I think names are a distraction. If they come up with a good description of ME then the name won't matter so much, and an appropriate name will follow-on naturally. If they don't come up with a good description of ME, then the whole process is a waste of time anyway, whatever name they use.
 
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Ember

Senior Member
Messages
2,115
That explains the logic.
I was asking my question, Bob, from the perspective of the audience being addressed in these written comments. Although the authors of the CCC didn't have plans to write another definition, the CCC may turn out, even as its name suggests, to have been a transitional definition. But the CCC currently defines and is used to diagnose ME/CFS. So how logically consistent is it to ask HHS or the IOM to both adopt the CCC and use the name ME? If they were to adopt the CCC, wouldn't they then be using the name ME/CFS?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I was asking my question, Bob, from the perspective of the audience being addressed in these written comments. Although the authors of the CCC didn't have plans to write another definition, the CCC may turn out, even as its name suggests, to have been a transitional definition. But the CCC currently defines and is used to diagnose ME/CFS. So how logically consistent is it to ask HHS or the IOM to both adopt the CCC and use the name ME? If they were to adopt the CCC, wouldn't they then be using the name ME/CFS?
Oh, I see what you mean. Yes, that's a good point. It would help the process if we are consistent, and don't send them mixed messages. Perhaps some of your text that I've quoted in my previous post might help to provide an explanation.

Many patients consider the CCC to describe 'ME', which is perhaps a good enough reason to associate the name 'ME' with the CCC.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Thanks for relating Dr.Hydes position in all this for me.

I appreciate that.

Its inconceivable to me that the 50 'experts' have nothing to do with Dr.Hyde and his 'experts'.
I'd probably put Dr. Hyde in my top 3 ME doctors I admire. I want to go get worked up by him. He is extremely thorough which I admire to no end, considering how we are usually treated. He also tells it like it is. He's got great quotes in Osler's Web. e.g. He deemed certain actions by NIH on ME to be 'state-sponsored terrorism.'
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I agree with snowdrop and Bob. I believe CCC explained that it was basically a definition of ME but used the term "ME/CFS" for transitional purposes. The term "ME/CFS" being transitional from the term "CFS" to the term "ME" in North America. I don't think the definition itself was meant to be transitional (any more than any other disease definition is).

Ember, as you point out I could be clearer that I am asking for CCC to be adopted, with the only change being from the term "ME/CFS" to "ME." I will change that in my letter.
 

golden

Senior Member
Messages
1,831
is it correct to say then :

that this 'ME' (transitionary ME/CFS) definition in the CCC is nothing or very little to do with Dr.Hydes M.E. definition?


thanks
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
@golden, sorry, I don't remember what the differences were. It's been a while since I read Dr. Hyde's definition. I wouldn't say it has nothing to do with the CCC, but beyond that, I can't really comment right now. I am too exhausted now to read his definition, it is quite lengthy. I hope someone else can answer this better.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I have finished and sent in my letter. Thanks everyone for your feedback. I considered every suggestion here, on the Facebook group and in PM's I received and followed most of the suggestions. I decided to leave in my thoughts that CAA and PANDORA's comments were not representative of most patients, but I toned down the language as suggested.