Opposition to the Coalition 4 ME/CFS Proposal

[Ember]

This is just an attempt to make sure that CFS is kept as a disease, they dont want to get rid of the term CFS,

It may be best to limit the discussion actions, interpretations and strategies...and to allow people to speak for their own motives.

The slides and a recording of the presentation are available now at http://coalition4mecfs.org/ICDmeetingupdate.html.

 

[Dx Revision Watch]

ICD-9-CM for 2010

A two page CDC summary of the development of the coding of PVFS, (B)ME and CFS thru ICD-9, ICD-10, ICD-9-CM and proposals for ICD-10-CM, up to March 2001, can be downloaded here:

A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases:
http://www.co-cure.org/ICD_code.pdf

In 2001, the proposal had been for all three terms, PVFS, (B)ME and CFS to be coded in Chapter 6 Diseases of the nervous system, at G93.3, in line with international ICD-10 (see page 2 of the 2 page CDC document). According to information provided by Mary Schweizter, at one point, the proposals for ICD-10-CM had been for

PVFS to be coded at G93.3 to parent class G93 Other disorders of brain
(B)ME to be coded at G93.3
Chronic fatigue syndrome to be coded at G93.3

with

Chronic fatigue syndrome NOS coded in the R code Signs and Symptoms chapter (Chapter 15 in the retired international ICD-9, Chapter 18 in ICD-10-CM)

but that subsequently, the entry for Chronic fatigue syndrome at G93.3 was deleted, leaving Chronic fatigue syndrome NOS orphaned in the R code chapter of ICD-10-CM.

--------------------------------

Extract from the Signs and Symptoms section of ICD-9-CM for 2010

http://www.cdc.gov/nchs/icd/icd9cm.htm

ICD-9-CM Files via FTP

Select link for 2010


ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD9-CM/2010/

FTP directory /pub/Health_Statistics/NCHS/Publications/ICD9-CM/2010/ at ftp.cdc.gov

Unzip file:

09/16/2010 08:34AM 755,064 DTAB11.ZIP


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"The conditions and signs or symptoms included in categories 780-796 consist of: (a) cases for which no more specific diagnosis can be made even after all facts bearing on the case have been investigated; (b) signs or symptoms existing at the time of initial encounter that proved to be transient and whose causes could not be determined; (c) provisional diagnoses in a patient who failed to return for further investigation or care; (d) cases referred elsewhere for investigation or treatment before the diagnosis was made; (e) cases in which a more precise diagnosis was not available for any other reason; (f) certain symptoms which represent important problems in medical care and which it might be desired to classify in addition to a known cause."

SYMPTOMS (780-789)

[...]

780.7 Malaise and fatigue

Excludes: debility, unspecified (799.3)

fatigue (during):

combat (308.0-308.9)

heat (992.6)

pregnancy (646.8)

neurasthenia (300.5)

senile asthenia (797)

780.71 Chronic fatigue syndrome

780.72 Functional quadriplegia

Complete immobility due to severe physical disability or frailty

Excludes: hysterical paralysis (300.11)

immobility syndrome (728.3)

neurologic quadriplegia (344.00-344.09)

quadriplegia NOS (344.00)

780.79 Other malaise and fatigue

Asthenia NOS

Lethargy

Postviral (asthenic) syndrome

Tiredness

 

[Dx Revision Watch]

Ric, it is evident that you have not understood what I have written.

I will not be opposing this. As you'll hear from the videocast of the May 2011 CFSAC meeting, I was one of the individuals who briefed CFSAC Committee members for the discussions around ICD-10, proposals for ICD-11, the implications, worldwide, for DSM-5 and the implications for DSM-5 of having CFS coded under "Symptoms, signs and ill-defined conditions" and I stand by my belief that US patients will be hurt by CFS remaining coded under "Symptoms, signs and ill-defined conditions".

Suzy

 

[Guido den Broeder]

Suzy is doing many things for ME.

It just so happens, that the ICD-10 is one of the few places where ME is properly recognized for what it is. Therefore, no ME advocacy to change something there is needed. We do need to keep watch that it stays this way in the ICD-11.

When it comes to CFS, IMHO it should not be in the table at all. Not under G, and not under R.
If you have been diagnosed with CFS, your diagnosis is simply incomplete. You should go back and find out which disease you really have, ME or something else.

 

[Jill McLaughlin]

Tina,

Does the coalition support Option 2 or any of the other options put forth by the committee?

Who among drs or professionals support your proposal?

Thanks,

Jill

 

[floydguy]

Ric, it is evident that you have not understood what I have written.

I will not be opposing this. As you'll hear from the videocast of the May 2011 CFSAC meeting, I was one of the individuals who briefed CFSAC Committee members for the discussions around ICD-10, proposals for ICD-11, the implications, worldwide, for DSM-5 and the implications for DSM-5 of having CFS coded under "Symptoms, signs and ill-defined conditions" and I stand by my belief that US patients will be hurt by CFS remaining coded under "Symptoms, signs and ill-defined conditions".

Suzy

CFS is an ill-defined condition and it should remain that way or go away. I sure the heck hope that you are not representing US patients. I have been fighting like hell to prevent a CFS diagnosis. Why on earth would anyone want to perpetuate this diagnosis? It really boggles the mind.

 

[eric_s]

CFS is an ill-defined condition and it should remain that way or go away. I sure the heck hope that you are not representing US patients. I have been fighting like hell to prevent a CFS diagnosis. Why on earth would anyone want to perpetuate this diagnosis? It really boggles the mind.

And what diagnosis did you get, Floyd?

Also a lot of research has been done into CFS. Would you want to throw all of this away?

I think everybody wants to eventually get rid of CFS, but realistically, how long do you think it will take to have everybody use the ICC? What do you want to happen to people who have been diagnosed with CFS until then? I don't live in the USA, so the ICD-10-CM doesn't affect me directly, but i would not want my diagnosis to be in the R section.

 

[rlc]

Hi eric-s there has been NO research done on CFS it has all been done on mixed Cohorts, some with ME and a large collection of other known disease that have been misdiagnosed as CFS and thrown into the mix, it is all garbage and should be thrown in the rubbish along with the bullshit waste basket diagnosis CFS!!

The invention of the fictitious illness CFS, has caused the death of thousands of people across the planet, both ME patients who have been denied proper treatment. And a vast number of people who have been wrongly given a CFS diagnosis, when they really have fatal diseases that have not been treated because they have been given the bullshit diagnoses CFS, not to mention the millions of people who have had their lives destroyed and left to suffer, the Coalition proposal will guarantee that the Genocide will continue for generations to come!!!!

You only need to read what Tina has been saying in the other tread, to realise that they are spinning you a load of crap.

Quotes from Tina,

only by showing that CFS is the inaccurate and poorly defined criteria for the real disease, ME, will we get that accomplished

So shes saying that CFs is an inaccurate and poorly defined criteria, and that ME is the real disease.

Then she says

Studies into ME and studies into CFS both show neurological abnormalities. So, we now have solid foundation to make the request now.

So now shes completely contradicting herself and saying that CFS is a real disease and has neurological abnormalities just the same as ME

This proposal has nothing to do with getting CFS retired it is all about making sure that it never gets retired, and continues to be seen as the same disease as ME.

The groups that make up the Coalition 4 ME/CFS and the CAA are the enemies of ME and do as much damage to the ME cause in the US, as the Wessely School has in the UK, they have always to refused to acknowledge MEs existence, have rubbished the work of the likes of Drs Hyde and Ramsey, they rubbish all the medical literature on ME since 1934 and try to make out its for some other disease that miraculously disappeared of the face of the planet when the CDC invented CFS, they ignore all scientific research that proves them wrong, the insist on using the term ME/CFS as if they are the same disease, and continue doing this despite the fact that the ICC says that ME and CFS are not the same illness!! . They will not do anything to raise awareness that CFS is not a disease, it is always a misdiagnosis!! And that there is a lot of information that they could be making available which would let people know what tests that need to be done to get a correct diagnosis. They never try to get the level of testing before someone gets a CFS diagnosis increased. People who try to get them to recognize ME get kicked out of their organizations and get barred from their websites, as has happened to numerous people on the Phoenix rising site, if I stop posting it will be because Ive been barred for pointing out that Cort Johnson has been deceiving you all, and has not said a word about being involved in this ridiculous Coalition proposal, and has gone behind everybodys backs and allowed the Phoenix rising name to be signed to this bullshit proposal without consulting anyone, giving you no chance to object, and now your only hope is to write to the CDC who dont exactly have a reputation for listening to patients!!

And now here we go again, ME is going to get recognized in the US ICD for the first time, so their scrabbling to get CFS the same ICD code, so they can keep spreading their bullshit that CFS is a Neurological disease, no recognized medical source says that CFS is a Neurological disease, it is a fatigue Syndrome a set of symptoms that could be caused by hundreds of different know diseases. They dont want the world to know how wrong they are, because then their donations will stop!!!!!

And there bullshitting people with the laughable, ludicrous crap that there doing this so CFS will one day be retired as a diagnosis, If this goes through the waste basket diagnosis CFS is going to be in the ICD as a Neurological disorder for the rest of your lives!!!! Dont believe them and dont support them!!!!!!!!!!!!

For those that dont know who the Coalition 4 ME/CFS are, they are

Coalition members are the Chronic Fatigue Syndrome/Fibromyalgia Organization of Georgia, Inc., CFS Knowledge Center, CFS Solutions of West Michigan, PANDORA, Inc. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.), Phoenix Rising, Rocky Mountain CFS/ME & FM Association (RMCFA), Vermont CFIDS Association, Inc., and Wisconsin ME/CFS Association, Inc.

If you have ME, or want CFS abolished as a diagnosis do not support in any way these organizations. Or the CAA

All the best

 

[Dx Revision Watch]

Rlc wrote:

...There is no need for this coalition proposal in the first place, ME has been planned to be in the ICD anyway, this will mean when it is introduced all doctors and insurance companies will be forced to recognize ME, and people will be able to approach the government for funding for research...

...or doctors and insurance companies will avoid the unfamiliar G93.3 code and continue to code patients [to R53.82] "Chronic fatigue syndrome NOS" under "Symptoms, signs and ill-defined conditions".

"Forced to recognise" by whom? Forced to re-assign current CFS coded patients to G93.3 (B) ME by whom?

R53.82 is a gift to medical insurance companies.

 

[Dx Revision Watch]

A point for Jill (in case she were thinking of challenging me on this) and an important question for Cort:

ETA: I have also asked this question of Cort on the thread:

Coalition4ME/CFS Pushes For CFS Be Classified as Neurological Disorder

which Cort opened yesterday, September 18:


I first became aware that the long-standing issue of the proposed coding of CFS in ICD-10-CM had been placed on the tentative agenda for the September 14 ICD-9-CM Coordination and Maintenance Committee meeting when Marc-Alexander Fluks put out a notice on the Co-Cure mailing list, on August 20.

I had no information about which individuals or patient organizations or other bodies had got the issue onto the tentative agenda.

I was not aware that a representation (dated July 14) by the C4ME/CFS had been submitted to Donna Pickett nor that Marly Silverman and Mary Dimmock would be representing the C4ME/CFS at the Coordination and Maintenance Committee meeting on September 14 and making a presentation (nor the content of that presentation), until an announcement was put out on Co-Cure, dated September 12, by Mike Munoz.

As I've already reminded Jill, I am not a "group", I do not claim a mandate to represent others; any position on any issue that I hold, I hold as an individual, as an advocate for an adult patient and as a website owner who monitors a number of international issues of relevance to ME patients, carers, advocates and the patient organizations whose interests they represent.

The C4ME/CFS comprises the following member organizations, all of whom, one assumes, signed up to the representations made in its name:

CFS/Fibromyalgia Organization of Georgia, Inc.
CFS Knowledge Center
CFS Solutions of West Michigan
PANDORA Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
Rocky Mountain CFS/ME & FM Association (RMCFA)
Vermont CFIDS Association Inc.
Wisconsin ME/CFS Association, Inc.
and Phoenix Rising​

I do not consider that this joint initiative, led by Marly Silverman and Mary Dimmock, should have been taken forward without prior announcement; in my view, an announcement should have been made prior to the letter to Donna Pickett, dated July 14, that the Coalition had agreed to take this issue forward.

So although I support in principle the taking forward of the ICD-10-CM issue at the Coordination and Maintenance Committee meeting and the initiative to lobby for CFS not to be retained under "Symptoms, signs and ill-defined conditions" and coded in Chapter 18 at R53.82, I do not support the way in which the C4ME/CFS has set about their initiative.

I have a big thing about transparency and I would like to know why it was agreed with the other Coalition member groups that this initiative would be taken forward without openness?

Phoenix Rising is a member of the Coalition.

Would Cort please explain to us why it was felt that this initiative should not be announced by the Coalition way back in May, June or July, when the letter to Donna Pickett was being drafted, in the spirit of openness and transparency and in order to allow time for informed public debate?

I ask this not to provoke confrontation with Cort or any organization or its reps, but I would genuinely like to hear from Cort the C4ME/CFS's rationale for approaching this initiative in this manner and whether Cort is comfortable with initiatives being supported in the name of "Phoenix Rising" but where the members of Phoenix Rising are effectively disenfranchised from inputting into initiatives that are being undertaken in their name.

With the expansion of Phoenix Rising and its registration as a 501c organization, this is an important issue that Cort needs to address.

Suzy

 

[rlc]

ATTENTION EVERYONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

If anyone is still in any doubt about what the Coalition 4 ME/CFS real intentions are with their proposal the truth can be found in this statement from Cort

Quote from Cort Johnson

"The task then is to redefine CFS correctly and rename it 'ME"

Link http://phoenixrising.me/forums/show...or-CFS-Be-Classified-as-Neurological-Disorder

So there you have it in black and white the aim of the coalition 4 ME/CFS is to convert CFS into ME, in complete defiance of the ICC which states that ME and CFS are totally different disease, the coalitions aims is to STOP ME being seen as a separate disease!!!!!!!! And to steal the name ME and all the research that belongs to it, and its legitimate status as a Neurological disease! And get the name CFS converted to ME, the Coalition is trying to destroy everything that the ICC has achieved by separating the two illnesses. And get them seen as being exactly the same thing, thereby guaranteeing that the truth will never come out.

Do everything you can to stop this, your lives. and those of millions of people are at stake!!!!!

All the best

 

[Dx Revision Watch]

Rlc wrote:

If this goes through, the code for CFS will not be reviewed again for at least a decade, So it guarantees that everybody is going to have to put up with this rubbish CFS diagnosis for at least another ten years!!!!! But that wont be the end of it, the writers of the ICD have a reputation to uphold, there not going to turn round and say you know how we coded CFS as neurological, guess what its not even a disease, silly us, ooops! It will make them look ridiculous!!!! They wont change the code again and you are going to be stuck with CFS for the rest of your lives!!!!!!!!!!!!!!!

There will be opportunities to make representations, post implementation of ICD-10-CM, after 2013, when the code freeze has been lifted.

 

[eric_s]

Hi Rlc, i think we probably have differences in what we call "CFS". Maybe also in what we call "ME". For me, "CFS" is what is defined by the Fukuda criteria (and also the Oxford criteria and other sets of criteria, if they use the term "CFS"). "ME", for me, is what is definded by the ICC, Ramsey criteria and other criteria that use that term.

As far as i know a lot of research has used Fukuda and is thus about "CFS". But probably also applies to CCC ME/CFS and ICC ME, at least a good part of it. There are some studies that show how many people out of 100'000 will get a Fukuda "CFS" diagnosis, CCC "ME/CFS" diagnosis and so on. So we have some idea how selective these sets of criteria are.

So basically i see these diagnoses like circles. Oxford CFS (which is total bs and should not be used anyway) is the largest or one of the largest circles, in case there's an even looser set of criteria, Fukuda CFS is a smaller circle within the Oxford CFS cirlce, CCC ME/CFS is a smaller circle within Fukuda CFS, and ICC ME is probably again a bit smaller and within CCC ME/CFS. But anyone with ICC ME or CCC ME/CFS most probably also fits the criteria for Fukuda CFS. Unless CCC ME/CFS or ICC ME would be exclusionary for Fukuda CFS, which they are not, to my knowledge. That would also not make sense, in my opinion, because i think they are all trying to describe the same illness, they only differ in how selective and how strict they are. Fukuda will probably get more people in that have nothing or something else and the CCC and ICC might keep some people out, because they are atypical, when in reality they have the same illness like the people who get the diagnosis. If CCC ME/CFS and ICC ME would be exclusionary for Fukuda CFS, then we would have a problem, because then probably most of the research that has used Fukuda would have studied subjects that should have been exculded, because a number of them probably also fit the CCC or ICC.

I believe Fukuda, the CCC and the ICC all try to describe the same illness. Just with Fukuda you will get more people in there that are misdiagnosed.

Btw, you seem to be against the term "ME/CFS" very much. But this is the term that the CCC uses. So don't you think the CCC are good criteria?

I don't have time and energy to read all of your posts, sorry, they are too long for me at the moment, but i think that what the Coalition 4 ME/CFS has done was a good thing and will help us all. Of course other people wil see this differently and it is hard to make a good judgement here, but i think one should be careful not to attack the organisations that are helping us without a good reason, because we don't have too many of them and those that we have are lacking funding, personnel, etc. already. And also one should not insult people who are ill themselves and are working a lot despite of their illness to try to help all of us.

 

[Jill McLaughlin]

Sorry but have to share. Got a chuckle out of this. Had some saved articles and
some from the Journal of Psychosomatic Research. But heading was cut off
and listed as Journal of Psychos... Ya think? : )

 

[Dx Revision Watch]

A point for Jill (in case she were thinking of challenging me on this) and an important question for Cort:

ETA: I have also asked this question of Cort on the thread:

Coalition4ME/CFS Pushes For CFS Be Classified as Neurological Disorder

which Cort opened yesterday, September 18:

The thread in the quote above, started by Cort, appears to be no longer accessible or temporarily unavailable.

Possibly Cort is in the process of revising some of the content in his Front Page article to which the thread was associated, as I had also drawn his attention to a number of misconceptions around ICD-10, ICD-9-CM and ICD-10-CM classifications and codings within his article, in addition to raising the issue of lack of transparency.

 

[Ember]

The recording of the presentation has also been removed: http://coalition4mecfs.org/ICDmeetingupdate.html

 

[Dx Revision Watch]

The recording of the presentation has also been removed: http://coalition4mecfs.org/ICDmeetingupdate.html

As Cort's article on the C4ME/CFS's initiative and the thread associated with that article is no longer available, I'm posting the two comments I left on the thread, this afternoon, below:

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Moderator: content removed. We remove threads for a reason; please respect it.

 

[Guido den Broeder]

(...) i think they are all trying to describe the same illness, they only differ in how selective and how strict they are.

Hello Eric,

I suggest that you read the Fukuda article. It clearly says that CFS is not intended as a clinical diagnosis. CFS is a tool to select patients for trials, and that's all it is.

 

[eric_s]

Hi Guido

I've read it, but obviously i didn't remember that. Probably beacuse i was more interested in the symptoms, etc.

Now that i've looked at it again, i don't know if i share your opinion. In the Fukuda article they call "chronic fatigue syndrome" a "clinically defined condition". So it is a diagnosis, according to Fukuda et al. If their criteria were orignally intended to be used for research that does not mean CFS (at least as defined by other criteria) is not a clinical diagnosis.

If you think otherwise, then what do the Fukuda criteria select, according to you? I think they select people with the same illness that ME criteria select, plus some more people who have something else or nothing at all (but nothing at all doesn't seem very likely to me, since you need a number of symptoms in addition to fatigue). But if you look at the symptoms Fukuda et al. list, they are very similar to the CCC or ICC, i think, so i would say they clearly try to filter out the same people with the same illness, only maybe in a less good way. If ME was exclusionary according to Fukuda et al. then i would agree that "Fukuda CFS" and ME are two totally different things, but the way i see it, they are not the same, but ME is a "subgroup" of Fukuda CFS, if you like.

I agree that only the CCC or now the ICC should be used, if possible, and i also want the term CFS to disappear. But i don't think leaving everybody who does not have the diagnosis "postviral fatigue syndrome" or "benign myalgic encephalomyelitis" (and that's the vast majority, i guess) in the R category is the better choice than adding "chronic fatigue syndrome" to G93.3.

 

[rlc]

Hi Suzy, the article by Cort has not just been moved from the front page to the advocacy section and now is blocked so it cant be viewed.
There was in a separate tread started by Cort in the advocacy section, which people could and did post replies to, including ones that strongly opposed Cort and the Coalition 4 ME/CFS proposal.

This tread and all the comments against the proposal have been deleted, Typical Phoenix rising censorship of opposing views.

Due to the outrageous nature of the comments made by Cort in this article it was immediately copied and reposted on other web sites,

Including Corts statement

The task then is to redefine CFS correctly and rename it 'ME'.

In his own words they, are aiming to obliterate ME as a separate disease once and for all, in complete defiance of the ICC. The aim of this proposal is to destroy ME and to continue conning the world that CFS and ME are the same thing.

So with a view of keeping transparency, which Cort is trying to stop by deleting treads here is his article again.

Moderator: Content removed. We remove threads and articles for a reason; please respect it.