Opposition to the Coalition 4 ME/CFS Proposal

[medfeb]

This is not what you are doing. You are making them the same.

Jill
I have seen that comment a few times but I cant tell if you appreciate that its the WHO ICD-10 that already has 'made them the same' in your words by pointing them to the same code. But just because they have the same code, does not make them exactly the same. Clearly ME and PVFS are not the same and yet they already have the same code in the ICD-10-CM and you haven't raised a concern about that. So I am having difficulty understanding the nature of the concern with pointing CFS to G93.3 as is done everywhere else.

 

[medfeb]

No, they are not. PVFS is the group name of G93.3, i.e. it IS the code, while ME is listed UNDER the code.
Since (non-ME) CFS is not postviral, it should not be alongside ME in the table.

You are correct in saying that PVFS is the heading and ME is under it. But I think the point that TIna was making is that they both have the same code G93.3 which is true

 

[Jill McLaughlin]

Mary: "This is a great question, Sosumi and is at the heart of why we are in such a
mess right now."

Yes and think it could have been given more consideration BEFORE you did this
without the consent or even any inkling of it within the general patient community.
You are really multiplying the problem rather than fixing it.

"First regarding the assertion in another post in this thread that CFS is not neurological - it
is very true that the term CFS has been applied over time to people that have fatigue do
to depression or other issues and as a result has ended up being a wastebasket of a
diagnosis. But the Coalition proposal is not about that wastebasket of diseases.
We are talking about the disease we call ME/CFS and sometimes CFS - a serious disease
best described today by the ME-ICC or the Canadian Case Definition".

Say what? There is no disease called ME/CFS, or actually CFS for that matter.
It doesn't matter what YOU call it or say or think it is. You do this based
on your "beliefs?" And present it to NCHS?

Again, were any drs or med professional involved in this?

Mary: "Its clear that when properly defined, ME/CFS is a neurological illness.
The evidence for this is:

• "
  
  Which is??? The ME/CFS myth continues. Who says *what* is properly defined. Or
  specifically it should be properly define first then coded accordingly.
  
  
  Mary:
• " there is a large body of scientific literature that demonstrates the underlying
  neurological pathologies and many of these articles are specifically demonstrating the
  difference between ME/CFS patients and depressed patients. These publications
  variously use the term ME/CFS or CFS. The Coalition proposal has a list of some
  of those studies over the last 10 years"
  
  Using terms arbitrarily or even incorrectly doesn't help or justify the continuation of it
  as you are doing. These studies use different definitions or meanings so in reality
  they do not mean much and cannot be applied to much of anything. You cannot cherry
  pick studies to fit your beliefs, which has been the problem all along.
  
  
  Mary: [*"] "the ME-ICC criteria, which defines a neurological disease, states that
  ME is sometimes referred to as CFS, indicating that they are talking about CFS
  as a neurological disease."
  
  AND.... Go on.... They say it shouldn't be called CFS - or ME/CFS. You seem to
  leave out some important things.
  
  
  Mary:
• "a number of ME/CFS experts have specifically stated publically that
  this is a neurological disease (e.g. Dr Komaroff - meeting with Mass CFIDS
  in 2010)"
  
  "This illness?" Which this? ME is neurological, CFS is a crapshoot.
  ME/CFS is a myth that can mean different things.
  
  
  Mary: "Regarding your question of which case definition will be used
  My opinion: I believe the empirical definition has already been
  broadly denounced. Regarding Fukuda which is broadly used:
  Fukuda focuses on fatigue and leaves other symptoms which
  are central to the disease as optional. It was developed
  in 1994 and we've learned alot in the last 17 years. Its time
  for Fukuda to be replaced."
  
  Again, not about your opinion or beliefs. Fukuda has been denounced for years.
  
  
  Mary: "So you are left with the Canadian Consensus Criteria and the ME-ICC.
  Each has its stengths and weaknesses as discussed in other threads in this
  and other forums (e.g. ME-ICC lacks diagnostic criteria - maybe that is in
  the physician guides that they haven't issued yet?). But both are a huge
  advancements over Fukuda and I think ME-ICC is the future."
  
  We aren't left with the Canadian criteria. CCC is not recognized in any
  official capacity. It is in a journal that is no longer in existence. Beyond
  opinions and beliefs, ME and ME/CFS and CFS are not the same. You
  believe they are and say they are and will create a proposal to fit
  your beliefs, not reality - unbeknownst to us.
  
  
  Mary: "The bottom line - We need to advocate for the adoption of such a well
  defined case criteria and also well defined diagnostic criteria
  with objective biomarkers to go along with the case definition. That is the
  only way we are going to get the care that is needed.[/QUOTE"]
  
  Yes we do, but this proposal will do the opposite. Again, if this is what you
  wanted you should have required well defined case criteria
  and assigned it an appropriate code, not this sloppy confusing mix that
  goes round in circles. You did not do what was necessary to do what
  you say you wanted to do. All this will do is make ME CFS.
  
  
  Bottom line - we need to stop this.
  
  
  
  

  This is a great question, Sosumi and is at the heart of why we are in such a mess right now.
  
  First regarding the assertion in another post in this thread that CFS is not neurological - it is very true that the term CFS has been applied over time to people that have fatigue do to depression or other issues and as a result has ended up being a wastebasket of a diagnosis. But the Coalition proposal is not about that wastebasket of diseases. We are talking about the disease we call ME/CFS and sometimes CFS - a serious disease best described today by the ME-ICC or the Canadian Case Definition.
  
  Its clear that when properly defined, ME/CFS is a neurological illness. The evidence for this is:
  

  • there is a large body of scientific literature that demonstrates the underlying neurological pathologies and many of these articles are specifically demonstrating the difference between ME/CFS patients and depressed patients. These publications variously use the term ME/CFS or CFS. The Coalition proposal has a list of some of those studies over the last 10 years
  • the ME-ICC criteria, which defines a neurological disease, states that ME is sometimes referred to as CFS, indicating that they are talking about CFS as a neurological disease.
  • a number of ME/CFS experts have specifically stated publically that this is a neurological disease (e.g. Dr Komaroff - meeting with Mass CFIDS in 2010)

  
  Regarding your question of which case definition will be used
  My opinion:
  I believe the empirical definition has already been broadly denounced. Regarding Fukuda which is broadly used: Fukuda focuses on fatigue and leaves other symptoms which are central to the disease as optional. It was developed in 1994 and we've learned alot in the last 17 years. Its time for Fukuda to be replaced.
  
  So you are left with the Canadian Consensus Criteria and the ME-ICC. Each has its stengths and weaknesses as discussed in other threads in this and other forums (e.g. ME-ICC lacks diagnostic criteria - maybe that is in the physician guides that they haven't issued yet?). But both are a huge advancements over Fukuda and I think ME-ICC is the future.
  
  The bottom line - We need to advocate for the adoption of such a well defined case criteria and also well defined diagnostic criteria with objective biomarkers to go along with the case definition. That is the only way we are going to get the care that is needed.

 

[Jill McLaughlin]

Yes it does make them the same.

Yes other countries have done this, but did it help?
No it further buried and reinforced ME as a fatigue syndrome.

So let's do something that doesn't work and keep doing it.
Does not make sense.

Were any drs or med professions involved in this?

Jill
I have seen that comment a few times but I cant tell if you appreciate that its the WHO ICD-10 that already has
'made them the same' in your words by pointing them to the same code. But just because they have the same
code, does not make them exactly the same. Clearly ME and PVFS are not the same and yet they already
have the same code in the ICD-10-CM and you haven't raised a concern about that. So I am having
difficulty understanding the nature of the concern with pointing CFS to G93.3 as is done everywhere else.

 

[sosumi]

This is a great question, Sosumi and is at the heart of why we are in such a mess right now.

First regarding the assertion in another post in this thread that CFS is not neurological - it is very true that the term CFS has been applied over time to people that have fatigue do to depression or other issues and as a result has ended up being a wastebasket of a diagnosis. But the Coalition proposal is not about that wastebasket of diseases. We are talking about the disease we call ME/CFS and sometimes CFS - a serious disease best described today by the ME-ICC or the Canadian Case Definition.

The ME-ICC calls for dropping CFS all together and using only M.E. and the ME-ICC.

Its clear that when properly defined, ME/CFS is a neurological illness. The evidence for this is:

• there is a large body of scientific literature that demonstrates the underlying neurological pathologies and many of these articles are specifically demonstrating the difference between ME/CFS patients and depressed patients. These publications variously use the term ME/CFS or CFS. The Coalition proposal has a list of some of those studies over the last 10 years
• the ME-ICC criteria, which defines a neurological disease, states that ME is sometimes referred to as CFS, indicating that they are talking about CFS as a neurological disease.
• a number of ME/CFS experts have specifically stated publically that this is a neurological disease (e.g. Dr Komaroff - meeting with Mass CFIDS in 2010)

Regarding your question of which case definition will be used
My opinion:
I believe the empirical definition has already been broadly denounced. Regarding Fukuda which is broadly used: Fukuda focuses on fatigue and leaves other symptoms which are central to the disease as optional. It was developed in 1994 and we've learned alot in the last 17 years. Its time for Fukuda to be replaced.

So you are left with the Canadian Consensus Criteria and the ME-ICC. Each has its stengths and weaknesses as discussed in other threads in this and other forums (e.g. ME-ICC lacks diagnostic criteria - maybe that is in the physician guides that they haven't issued yet?). But both are a huge advancements over Fukuda and I think ME-ICC is the future.

The bottom line - We need to advocate for the adoption of such a well defined case criteria and also well defined diagnostic criteria with objective biomarkers to go along with the case definition. That is the only way we are going to get the care that is needed.

Emphasis on "When properly defined." What guarantee do I have that this will be properly defined? You go in there with CFS and HOPE that the ICC or CCC will be used? My Dr. will have no problem Dxing me with M.E. I don't want it equated with an ill defined CFS.

And, yes, I, too, would love to know who these "anonymous" medical professionals, who are speaking for me, are?

 

[sosumi]

Mary,

This is not what you are doing. You are making them the same.
Of course this fits with the constant ME=CFS=ME/CFS that Pandora has been
rolling out for months.

It's been rolling out for years, Jill.

http://www.afairname.org/

Fortunately, many of the advocates who supported this appear to have bowed out. Even Peterson wants to go back to the future by using CFIDS.

 

[sosumi]

Jill
I have seen that comment a few times but I cant tell if you appreciate that its the WHO ICD-10 that already has 'made them the same' in your words by pointing them to the same code. But just because they have the same code, does not make them exactly the same. Clearly ME and PVFS are not the same and yet they already have the same code in the ICD-10-CM and you haven't raised a concern about that. So I am having difficulty understanding the nature of the concern with pointing CFS to G93.3 as is done everywhere else.

Maybe the U.S. got it right this time?

 

[Jill McLaughlin]

This is true, but patients put a stop to it. It's the Pandora/coalition people that kept
pushing this at the CFSAC meeting even to make the recommendation to
change the name to ME/CFS. We can't even blame the gov't.

It's been rolling out for years, Jill.

http://www.afairname.org/

Fortunately, many of the advocates who supported this appear to have bowed out. Even Peterson wants to go back to the future by using CFIDS.

 

[Jill McLaughlin]

They did, actually.

Here is the issue. They are making CFS the same as ME. But they claim this will make
CFS disappear and it will become ME and the ICC. No one seems to understand this.
The ME-ICC seems to say the opposite.

They claim that drs or professionals were in on this. But they can't say who?
If this were true, why wouldn't the drs/professional be willing to help
explain it?

What about the CAA? Do they support this? Dead silence. Or gee they
haven't gotten back yet etc. Well I'd bet that Kim has a blackberry.

What about the presentation and session at the conference? Why have
we heard nothing?

Maybe the U.S. got it right this time?

 

[Jill McLaughlin]

The Coalition 4 ME/CFS made a proposal to NCHS to change the ICD code
for CFS to the same code as ME. They posted an updated FAQ to answer
some questions [http://coalition4mecfs.org/ICDFAQ.html], but serious
questions remain regarding the implications.

It appears that giving them the same code will make CFS the same as ME
for diagnostic purposes. The apparent rational that the coalition gives
for doing so is that this will make CFS disappear and it will change to
ME and the ICC.

Yet it seems that the ME-ICC says the opposite and calls for dropping
CFS or ME/CFS.

Patients have been very confused and concerned. The coalition claims
that doctors/medical professionals were involved in their recommendation
and supported it. If this were true, why wouldn't the drs/professionals
be willing to endorse it publicly or at least help explain it to allay
our concerns?

The coalition said that there was a presentation or session at the IACFS
conference regarding the proposal and coding issues. Why have we heard
nothing about it?

It has been asked repeatedly whether the CFIDS Association of America or
the IACFS support their proposal. Again, this is not at the general
discussion level but has been put up for consideration by NCHS.

There is a deadline fast approaching and it WILL be acted upon one way
or another. Ignoring this should not be an option as it has serious and
far reaching consequences. It would seem reasonable that we should
expect them to have some position or at least opinion.