Opposition to the Coalition 4 ME/CFS Proposal

[Jill McLaughlin]

Hope, I do agree with you, but we are stakeholders and this relatively small group
took it upon themselves to do this. This has been in the works for some time.
It looks to me like the ME ICC came out and was much stronger than anyone
had anticipated so they had to try to incorporate it to appease patients, but this
does not seem to be a rational approach.

The blanket CFSAC endorsement as proof of support? Many really have written off the CFSAC
in general. They have hardly been on top of things. And even as such, have heard many
CFSAC recommendations passed without the support of all members, so listing every CFSAC
member from its inception as supporting this proposal seems disingenuous and misleading.

I haven't followed the twists and turns of this thread but have two comments:

A. This will be unpopular but not every policy or other decisions made about CFS need to be put up to a vote or have the support of patients and their caregivers (although some decisions definitely should be). It should be noted that the Coalition is communicating with the public though about what they intend to do and that is realistic. Sometimes, not just for CFS, putting things up for a vote by the public rather than by experts actually hinders rather than helps a process.

B. The recommendations put forth by the Coalition emanated from CFSAC discussions and these suggestions were made and supported by CFSAC members, including Dr. Nancy Klimas and Dr. Leonard Jason, so it is not without expert input.

[Note -- I am not involved with the ICD-9 process or with putting together the proposal -- just a watcher on the sidelines.]

 

[Roy S]

That revised FAQ states "It is very common for the ICD to group together illnesses that are different but similar."

Is it common for them to be listed the ways that these are proposed to be listed?

 

[Jill McLaughlin]

Roy, that's what it states, but again, this is "their" assertion. All I see listed are a few patient groups.
They they say there are professionals, but can't say who? Not really buying the posting of all CFSAC
members who ever lived. If people supported it why wouldn't they say so? Or perhaps it's time
to expect answers from them and stop playing these games.

Perhaps this is true what they said, but this is NOT what they are doing, so this is not even
the issue, just a red herring. They are trying to make them the same. It is obvious and no
doubt they were up to this with their barrage of all ME/CFS.

And what of the Pandora/coalition presentation and session from the conference? Lots of
fanfare previously but have heard nothing about this. With complete and total secrecy,
it is very suspicious. Should think even those who may agree would be concerned.
It comes down to a matter of trust.

And does the CAA support it? Again, dead silence. Hard to believe they knew nothing about this?

That revised FAQ states "It is very common for the ICD to group together illnesses that are different but similar."

Is it common for them to be listed the ways that these are proposed to be listed?

 

[usedtobeperkytina]

I think this is an example. G93.0

Cerebral cysts.
It applies to arachnoid cyst and porencphalic cyst (acquired)

I notice that there are many entries that refer to G93.0, I see 10., actually 12.

http://www.icd10data.com/ICD10CM/Codes/G00-G99/G89-G99/G93-/G93.0

For multiple sclerosis, there are different kinds: brain stem, cord or generalized. They are all coded the same.

And of course, ME and PVFS are in the same code.

Tina

 

[Jill McLaughlin]

Of course, but this is not what you did. You made them the same.

I think this is an example. G93.0

Cerebral cysts.
It applies to arachnoid cyst and porencphalic cyst (acquired)

I notice that there are many entries that refer to G93.0, I see 10., actually 12.

http://www.icd10data.com/ICD10CM/Codes/G00-G99/G89-G99/G93-/G93.0

For multiple sclerosis, there are different kinds: brain stem, cord or generalized. They are all coded the same.

And of course, ME and PVFS are in the same code.

Tina

 

[Roy S]

Demagogy: a strategy for gaining political power by appealing to prejudice, emotions, fear, and expectations...

*skilled demagogues often need to use only special emphasis by which an uncritical listener will be led to draw the desired conclusion themselves"

http://en.wikipedia.org/wiki/Demagogy

I used the above as my signature on the other forum for quite a while to try to alert people to the dangers of demagoguery in advocacy. It's a very destructive behavior that usually starts with creating doubt and builds to nurturing hate.

 

[sosumi]

What definition of CFS will be used?

 

[Jill McLaughlin]

Roy, No one is creating doubt. There is no doubt. It's not about similar conditions. They are
making them the same so these examples do not apply. We know what they did.

People are angry. We have 5 weeks to do what probably took them 5 months. So anger and
mistrust are justified. This is not nurturing hatred.

Nor demagogy. Rather misdirected hyperbole is just as bad.

Demagogy: a strategy for gaining political power by appealing to prejudice, emotions, fear, and expectations...

*skilled demagogues often need to use only special emphasis by which an uncritical listener will be led to draw the desired conclusion themselves"

http://en.wikipedia.org/wiki/Demagogy

I used the above as my signature on the other forum for quite a while to try to alert people to the dangers of demagoguery in advocacy. It's a very destructive behavior that usually starts with creating doubt and builds to nurturing hate.

 

[Jill McLaughlin]

Sosumi, this is HHS. So either Fukuda or empiric I suppose. This is not ME so playing
this bait and switch with ME will not matter. CFS does not define a neurological illness.
Trying to put a round peg in a square hole doesn't work.

What definition of CFS will be used?

 

[sosumi]

My concern is that they (the government) will apply the Empiric definition although Fukuda is not much better. Thereby connecting M.E. to the Empiric CFS. I can't see them using the International (M.E) or even Canadian criteria.

I may have missed it, but I see nothing about any definition being attached to the CFS that is being proposed for G93.

I would think one would have settled on a (strict) definition prior to asking for a particular code. That, in and of itself, shows that this proposition was not well thought out. Again, unless I missed something.

PR is a part of this "Coalition." Would Cort or any of the hierarchy of PR care to explain this a little better? Why is Tina the only person in the coalition responding? I can see how some people diagnosed with CFS would want the G93 code and I don't blame them. But the Empirical Definition is really a stretch for a neurological illness.

I have a CFS Dx now but do not see any problem with my physician changing it to M.E. when the new codes are adopted.

 

[Ernie]

And didn't one of the tweets about Unger say the CDC plan to use the Empirical definition? I think Cort may have been the one that tweeted it.

 

[Guido den Broeder]

And of course, ME and PVFS are in the same code.

Tina

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.

 

[Bob]

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.

That's an interesting point.
Is PVFS actually the name of the group, or is it just the first listed in the group?
(That's a genuine question.)

Guido, I would disagree with you here... I would not say that ME is post viral... I'm not aware of it being described as such, or there being any evidence for this.
And if not, then why is ME listed under PVFS if PVFS is the name of the group? ME is not post viral, as far as I'm aware.

 

[Guido den Broeder]

If you take a look at some other pages in the ICD-10, you'll get the picture.


ME is post-herpes.


You might want to read:

Ramsay AM (1986), "Postviral Fatigue Syndrome. The saga of Royal Free disease", London, ISBN 0-906923-96-4
Lerner M, Beqaj S, Fitzgerald JT, Gill K, Gill C, Edington J (2010), "Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome", Virus Adaptation and Treatment, May, Volume 2010:2, p.47-57


Regards,

Guido

 

[Jill McLaughlin]

The proposal has it backwards. They are making them the same. (Note Tina's response about
using or grouping similar conditions. This was dodging the issue.)

This will ONLY eliminate true ME and ME will become CFS (just as it is in the UK).
It will NOT change what CFS is, this is determined by the definition. So ME will become
CFS(Fukuda/empiric). If terms are used interchangeably, they may use the term
ME but it will MEAN CFS.

My concern is that they (the government) will apply the Empiric definition although Fukuda is not much better. Thereby connecting M.E. to the Empiric CFS. I can't see them using the International (M.E) or even Canadian criteria.

I may have missed it, but I see nothing about any definition being attached to the CFS that is being proposed for G93.

I would think one would have settled on a (strict) definition prior to asking for a particular code. That, in and of itself, shows that this proposition was not well thought out. Again, unless I missed something.

PR is a part of this "Coalition." Would Cort or any of the hierarchy of PR care to explain this a little better? Why is Tina the only person in the coalition responding? I can see how some people diagnosed with CFS would want the G93 code and I don't blame them. But the Empirical Definition is really a stretch for a neurological illness.

I have a CFS Dx now but do not see any problem with my physician changing it to M.E. when the new codes are adopted.

 

[Jill McLaughlin]

Good point Guido. Actually they are not. They continue these errors and
build on them. It seems like they had an objective and tried to weave
together a narrative to support it.

The premise of the proposal is a declaration of fact that CFS is neurological.
It is not or if anything would be mixed at best. So many with non neuro illnesses
will be given the wrong code under their proposal. This will not help patients.
And will not "MAKE" CFS neurological by some code magic or sleight of hand.

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.

Originally Posted by usedtobeperkytina
"And of course, ME and PVFS are in the same code."

Tina

 

[medfeb]

That revised FAQ states "It is very common for the ICD to group together illnesses that are different but similar."

Is it common for them to be listed the ways that these are proposed to be listed?

Roy

In the ICD-10, issued by the WHO, PVFS is listed at G93.3 with ME under it and CFS pointing to it - all three terms use the same exact code. All countries that I know of either use the ICD-10 directly or use a modification that uses G93.3 for all three terms. So without even looking at other diseases, this is exactly what WHO has done for PVFS, ME and CFS.

The U.S. version of the ICD-10, called the ICD-10-CM, currently has CFS pointing to Chronic Fatigue under Signs and Symptoms under the R code. The only change that the proposal made was to repoint CFS from R53.82 to G93.3. The proposal does not ask for ME to be dropped or repointed. Making this change aligns the U.S. version of ICD-10 with how it is in every other country.

I see this situation as exactly analogous to what happened in the UK when there was an attempt to place CFS under Neurasthenia. It wasn't allowed because the WHO ICD-10 lists CFS at G93.3

 

[Jill McLaughlin]

Roy

In the ICD-10, issued by the WHO, PVFS is listed at G93.3 with ME under it and CFS pointing to it - all three terms use the same exact code. All countries that I know of either use the ICD-10 directly or use a modification that uses G93.3 for all three terms. So without even looking at other diseases, this is exactly what WHO has done for PVFS, ME and CFS.

The U.S. version of the ICD-10, called the ICD-10-CM, currently has CFS pointing to Chronic Fatigue under Signs and Symptoms under the R code. The only change that the proposal made was to repoint CFS from R53.82 to G93.3. The proposal does not ask for ME to be dropped or repointed. Making this change aligns the U.S. version of ICD-10 with how it is in every other country.

I see this situation as exactly analogous to what happened in the UK when there was an attempt to place CFS under Neurasthenia. It wasn't allowed because the WHO ICD-10 lists CFS at G93.3

-----
Originally Posted by Roy S
That revised FAQ states "It is very common for the ICD to group together illnesses that are different but similar."

Is it common for them to be listed the ways that these are proposed to be listed?

 

[Jill McLaughlin]

Mary,

But you all keep mixing it up. This is what Tina was saying also.
That revised FAQ states "It is very common for the ICD to group
together illnesses that are different but similar.

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.

This will make ME into CFS, thus true ME will vanish. You say the intention
was not to eliminate ME from the ICD but the result of what you are doing
will be virtually the same. ME=CFS(Fukuda/empiric) or ME/CFS for short.

Then you jump to somehow claiming that this will make CFS disappear and
will all become ME-ICC. This is folly.

Were there drs or med professionals who were involved that have
to remain anonymous? I really do not follow why this would
be the case.

Thanks,

Jill

Roy

In the ICD-10, issued by the WHO, PVFS is listed at G93.3 with ME under it and CFS pointing to it - all three terms use the same exact code. All countries that I know of either use the ICD-10 directly or use a modification that uses G93.3 for all three terms. So without even looking at other diseases, this is exactly what WHO has done for PVFS, ME and CFS.

The U.S. version of the ICD-10, called the ICD-10-CM, currently has CFS pointing to Chronic Fatigue under Signs and Symptoms under the R code. The only change that the proposal made was to repoint CFS from R53.82 to G93.3. The proposal does not ask for ME to be dropped or repointed. Making this change aligns the U.S. version of ICD-10 with how it is in every other country.

I see this situation as exactly analogous to what happened in the UK when there was an attempt to place CFS under Neurasthenia. It wasn't allowed because the WHO ICD-10 lists CFS at G93.3

-----
Originally Posted by Roy S
That revised FAQ states "It is very common for the ICD to group together illnesses that are different but similar."Is it common for them to be listed the ways that these are proposed to be listed?

 

[medfeb]

What definition of CFS will be used?

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.