• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Hold the CFSAC (etc.) accountable

Jill McLaughlin

Senior Member
Messages
196
There has been talk of this lately, for good reason.

Hold the CFSAC accountable for trying to change the name
to ME/CFS and recoding CFS to ME, which will eliminate
ME as a dx in the US. ME/CFS is NOT a name change or
new name. ME is not new and ALL name change efforts
were to get rid of the demeaning and derogatory CFS,
which this does not do.

Members have said that they are concerned and will
"revisit" it. Then dead silence. No dialogue. The CFSAC
meeting is about a week before the NCHS deadline so
not much time for revisiting.

The CFSAC is a CFS committee. They should not interfere
with "our" illness, which is NOT CFS. Take this to
HHS/Congress etc.

While we're at it, let's hold the Coalition 4 ME/CFS accountable.
They were to a large degree behind the CFSAC motions
as evidenced by the inundation with ME/CFS signs and tee shirts.
They are the masters of PR, though, again, most of the
stakeholders were not there.

And this Coalition 4 ME/CFS, a relatively small group of basically
unelected and un-appointed patients/lay persons took it upon
themselves to make this proposal for a change in federal
policy behind the backs of the majority of the community/
stakeholders. ME is not a fatigue syndrome, the erroneous
assumption upon which the rest is based and carried through.

And if this isn't bad enough, let's hold the CFIDS Association
of America and IACFS/ME accountable. There are major
revisions of ICD codes that have been presented to NCHS
and have been accepted for consideration.

This has a significant impact on the insurance issues,
reimbursement, benefits, etc. And the ICD codes determine
the diagnosis. This will in effect make ME the same as
CFS and no longer a diagnosis in the US other than as
a synonym for CFS. (Yes, they say that this is what the
WHO and other countries have done, but it has made NO
difference or any improvement in recognition or the "CFS"
worldview whatsoever.)

These are our national orgs, and no position? Comment?
Even an explanation? Patients were left trying to figure
this out on their own while under a narrow deadline by
NCHS to be able to make comments or oppose this.

There was a presentation on the code changes at the
IACFS/ME conference. Not even the common courtesy
of a report, other than a mention by Dr. Lapp.

Clearly there has been not even a fleeting thought of
accountability for anything. We had better start
demanding some.

Jill McLaughlin

.
 

Nielk

Senior Member
Messages
6,970
Hold the CFSAC accountable for trying to change the name
to ME/CFS and recoding CFS to ME, which will eliminate
ME as a dx in the US. ME/CFS is NOT a name change or
new name. ME is not new and ALL name change efforts
were to get rid of the demeaning and derogatory CFS,
which this does not do.


Hi Jill,

I'm trying to understand what you are stating here. Maybe it's my brainfog but, it doesn't make sense to me.
As far as CFSAC, you write:

1- They are trying to change the name to ME/CFS.
2- Recoding CFS to ME
3- This will eliminate ME as a dx in the U.S.
4- It doesn't accomplish getting rid of the name CFS which is demeaning and derogatory.

I am very confused. What are they exactly doing? Are you saying that CFS (as is) will be named ME (without a coding?). Are you saying they are changing the name CFS to ME/CFC? with what coding?

I am busy writing my testimony and I want to get this right. Please help and be clear in layman's term.

I appreciate it,
Nielk
 

Jill McLaughlin

Senior Member
Messages
196
Niekl, no it's not brainfog. : )

The CFSAC recommended a name change to ME/CFS and to code CFS to ME.
This is a basis of the Coalition 4 ME/CFS's proposal to NCHS to make these changes.

ME/CFS is not a name change as it still contains CFS.

There is no ICD code for ME/CFS and does not really exist as a diagnosis, just
ANOTHER made up term that can have different meanings.

Codes determine the diagnosis, but they do not define it. CFS will be the diagnosis, not ME.
ME will not exist as a diagnosis, only as a synonym for CFS.

Thus the objection that ME is not a fatigue syndrome. Most CFS definitions do not define
a neurological illness or specifically exclude neurological illnesses.
CFS is a R/O diagnosis of exclusion. So why is this exclusion not excluded.

ME/CFS makes no sense. If X excludes Y, then we call it XY, X/Y patients, X/Y research etc.
And wonder why there is no progress and no one gets it.

The Coalition 4 ME/CFS proposal uses the wrong premise as a basis and weaves a
narrative around it. They're trying to put a few patches on an unsustainable foundation.
It actually digs us deeper into the same mess we've been in for years.

If we allow this we will be stuck in fatigue initiatives and the same useless or harmful treatments
we've had all along. Keep it as CFS and we'll continue to get the "treatments"
associated with it.

Does this help?

I've sent a basic objection to NCHS but people are helping put together a more
thorough analysis, if you have any suggestions. And sending to CFSAC will be public
whereas comments to NCHS are not.



Hi Jill,

I'm trying to understand what you are stating here. Maybe it's my brainfog but, it doesn't make sense to me.
As far as CFSAC, you write:

1- They are trying to change the name to ME/CFS.
2- Recoding CFS to ME
3- This will eliminate ME as a dx in the U.S.
4- It doesn't accomplish getting rid of the name CFS which is demeaning and derogatory.

I am very confused. What are they exactly doing? Are you saying that CFS (as is) will be named ME (without a coding?). Are you saying they are changing the name CFS to ME/CFC? with what coding?

I am busy writing my testimony and I want to get this right. Please help and be clear in layman's term.

I appreciate it,
Nielk
------

Hold the CFSAC accountable for trying to change the name
to ME/CFS and recoding CFS to ME, which will eliminate
ME as a dx in the US. ME/CFS is NOT a name change or
new name. ME is not new and ALL name change efforts
were to get rid of the demeaning and derogatory CFS,
which this does not do.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I don't understand what you are saying either, and I have read more than one of your posts.

Can you say specifically who is doing what. In specific terms. Maybe a list that's short and clear.
 

Jill McLaughlin

Senior Member
Messages
196
Andrew, Do you understand the Coalition 4 ME/CFS proposal to NCHS?


I don't understand what you are saying either, and I have read more than one of your posts.

Can you say specifically who is doing what. In specific terms. Maybe a list that's short and clear.
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
Jill, what are you for? Are you still for no changes and keeping things the way they are now? Because I'm not satisfied with how things are now.

It's a complex problem with other pivotal issues such as diagnostic criteria and possible future biomarkers, but I'm leaning towards 3 subcodes under G93.3 for PVFS, ME, and CFS.

Also, Jill, I would appreciate it if you would make it clear when you are stating your opinion, as opposed to a statement of fact.

Showing respect for other advocates would be good too, IMO. Although you aren't a patient I'm sure you understand how bad it can be for patients to be ripped apart with a stream of unjust accusations. Don't you? I've been collecting some examples of of that. Shall I post them?

And would you like to discuss your history of involvement with groups that you are no longer with?
 

Jill McLaughlin

Senior Member
Messages
196
Roy, I do not see how much clearer I could be as to my position.

I or no one has to respect those who have not been honest and open or have banned and censored people for no legitimate reason
other than to thwart any disagreement or unwanted exposure. I do not believe they have been honest, as witnessed by the
exchange over Dr. Lapp's conf summary. Despite their positioning and narrative and what they stated as a rationale, they are in fact
eliminating ME as a diagnosis in the US. Whether this is their stated intention or even though they deny it, it's what they are doing.
Whether deliberately or through ignorance, the result is the same.

I have stated specifically what I have disagreed with or objected to in terms of their handling this situation overall. It was
clearly spelled out. So in no way is anything unjust accusations.

No I would not like to discuss irrelevancies like what groups I have or have not been with. What difference does it make?
Just more distractions? There is little time to waste as we have a deadline. Are you interested in discussing the issue? From
what you just said you are not in agreement with their proposal?

Jill, what are you for? Are you still for no changes and keeping things the way they are now? Because I'm not satisfied with how things are n

It's a complex problem with other pivotal issues such as diagnostic criteria and possible future biomarkers, but I'm leaning towards 3 subcodes under G93.3 for PVFS, ME, and CFS.

Also, Jill, I would appreciate it if you would make it clear when you are stating your opinion, as opposed to a statement of fact.

Showing respect for other advocates would be good too, IMO. Although you aren't a patient I'm sure you understand how bad it can be for patients to be ripped apart with a stream of unjust accusations. Don't you? I've been collecting some examples of of that. Shall I post them?

And would you like to discuss your history of involvement with groups that you are no longer with?
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
Andrew, Do you understand the Coalition 4 ME/CFS proposal to NCHS?

Not yet. I just came back from the doctor. It was a four hour trip. I can't think a lot. But here's what CFSAC says:

Adopt the term "ME/CFS" across HHS programs
http://www.hhs.gov/advcomcfs/recommendations/1012-142010.html

I don't know if/how this affects the ICD. It looks to me like they want NHHS to start calling it this. But with the International Consensus Criteria out now, maybe they will shift to that.
 

Hope123

Senior Member
Messages
1,266
This is the CFSAC recommendation from May 2011:

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS. CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under diseases of the nervous system at G93.3, in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committees recommendations of August 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in US disease classification systems. (Note: no disease classification system under HHS control proposes to move or to include CFS in or among psychiatric conditions.)

It has nothing to do with moving, eliminating, or changing ME as a diagnosis. Neither does the Coalition4ME/CFS proposal.

All both statements have to do with is moving CFS into the neurological category. While we can hope that eventually, CFS will be divided into appropriate subgroups with those patients fitting an ME diagnosis get diagnosed with ME, the fact of the matter is there are practically no patients diagnosed with ME in the US. In addition, a diagnosis of ME will not help you with certain things such as Social Security benefits as there is no ruling for ME but there is one for CFS.

Not moving the CFS diagnosis now means that the hundreds of thousand of US patients with ME but given the label of CFS will be classified as having "vague symptoms" -- not a good category to be in.

The "Note" is from DHHS and signifies that while CFSAC can recommend something, they don't have the power to actually move it. This is because of the powers set out by the charter CFSAC is under; for the charter to change would require Congressional action. Which is why perhaps Coalition4ME/CFS has to approach the group responsible for ICD-10 within the US, which is housed within the CDC.

If people have concerns about CFSAC, I challenge them to consider a seat on it. There are open seats every once in a while and anyone can be nominated for a seat. Co-Cure has announcements when a seat comes up. Maybe you can do a better job than the people sitting on it now. But perhaps you'll also find that people sitting on it are doing the best they can within the boundaries of what they can do and that change is not easy.
 

medfeb

Senior Member
Messages
491
ANdrew and Nielk

Hope is exactly correct in what she says.

- CFS is currently listed in 'Signs and Symptoms' under 'Chronic Fatigue' of all things. I cant think of a worse place unless CFS were to be listed under Neurasthenia.

- ME will not be replaced by CFS. Both terms will still exist along with PVFS which is actually the lead term at G93.3. ME will be listed under it and CFS will just point to it. (Technically CFS is just in the alphabetic index while PVFS and ME are in the primary index called the alphabetic index). The doctor can pick any one of them.

- According to testimony at the National Center for Health Statistics (NCHS) Sept 14 meeting, ME appears to be only very rarely used in the U.S. In fact, no one at the Sept 14 meeting had seen it be used. Patients in the U.S. who meet ME-ICC are diagnosed with CFS.

- at the May 2011 CFSAC meeting, the committee had an extensive discussion about whether they were allowed to present their recommendation to the NCHS. It does appear that there are barriers that make it difficult or impossible for the CFSAC to present their own recommendations. One of the members pointedly looked out at the audience and suggested that the public would not have the same conflict of interest if they were to submit the proposal.

- It has been suggested that moving CFS away from 'Chronic Fatigue' and placing it at G93.3 will make ME disappear and/or turn it into a psychological illness. I don't see how repointing CFS will have this impact on ME especially when the doctor can select ME as a term. But I can see how continuing to have patients that meet ME-ICC criteria categorized against 'Chronic Fatigue' and not recognizing them as suffering from a neurological disease will cause real harm to those patients.

Mary
 

medfeb

Senior Member
Messages
491
I or no one has to respect those who have not been honest and open or have banned and censored people for no legitimate reason other than to thwart any disagreement or unwanted exposure. I do not believe they have been honest, as witnessed by the exchange over Dr. Lapp's conf summary.

Jill,
You were given the facts regarding what was said by who during the Sept 14 NCHS meeting on dropping the term 'Benign' from 'Benign Myalgic Encephalomyelitis'. You dismissed what was said, not believing that someone in the audience not related to the coalition made the initial suggestion. I replied with the specific timeline of the audio where the discussions occurred so you could hear for yourself who said exactly what and when.

Please point out exactly where in that exchange I was not honest.
Mary
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Just so we don't lose reference to previous discussions around the ICD-10-CM coding issue, the C4's initiative and the CFSAC Recommendation of May 2011:

There are these existing threads:

Article: Coalition4ME/CFS Pushes For CFS Be Classified as Neurological Disorder Before Governmental Body
http://forums.phoenixrising.me/show...eurological-Disorder-Before-Governmental-Body


Next CFSAC meeting date has been announced for November 8, 2011
http://forums.phoenixrising.me/show...g-date-has-been-announced-for-November-8-2011


Opposition to the Coalition 4 ME/CFS Proposal
http://forums.phoenixrising.me/showthread.php?13723-Opposition-to-the-Coalition-4-ME-CFS-Proposal
 

Jill McLaughlin

Senior Member
Messages
196
Andrew, Their recommendations code CFS to ME. Their claims that it will not affect ME
or will "help" ME is wrong. It is just the opposite. Their main premise is that they are
the same, thus the constant barrage of ME/CFS drivel.

ME will become a synonym for CFS. They claim this was not their intention but it will
eliminate ME as a diagnosis in the US. Although they misrepresented the ME-
ICC also as a CFS or ME/CFS definition, which goes along with the rest of the
misinformation, the ME-ICC will be for naught.

Hint: this is what Wessely does.

It is true that the WHO has coded them the same, as have other countries, but IT
HAS DONE NO GOOD. It has made NO difference in recognition of the CFS worldview.
So let's do what we know doesn't work and keep doing it.

Otherwise it looks like they really just wrote a story that they made up.

Probably this contains some of the explanations.
http://www.hfme.org/whobenefitsfromcfs.htm

Not yet. I just came back from the doctor. It was a four hour trip. I can't think a lot. But here's what CFSAC says:


http://www.hhs.gov/advcomcfs/recommendations/1012-142010.html

I don't know if/how this affects the ICD. It looks to me like they want NHHS to start calling it this. But with the International Consensus Criteria out now, maybe they will shift to that.
 

Jill McLaughlin

Senior Member
Messages
196
OK Mary, I was given the facts *FROM THE MEETING TAPE, not from you. There were
overt contradictions and then when caught you said well if you really want to
know, listen to the tape. We should not have to do this unless we simply cannot
trust that the message will be conveyed accurately and honestly.
And then oopsie my bad - but YOU'RE just splitting hairs - but we'll "adjust" it.
[again] *I even noted "read fast before it changes."

This is what is not honest or accurate. Someone just copied the entire sequence:
Dr. Lapp Conference summary:

http://drlapp.com/news/iacfs-2011-summary/
Coalition 4 ME/CFS

Many of you may be aware that over the next two years the manner in which
illness is defined will be changing radically. Not only is the World Health
Organization revamping its disease codes, but by January 2013 the National
Center for Health Statistics will unveil the new International Classification of
Diseases (ICD-10 CM). The latter is a totally new system of categorizing
illness. How a disease gets categorized makes profound differences with respect
to validity and understanding as well as reimbursement amounts and insurance
issues.

To this end, the Coalition will be sending letters and lobbying all agencies
involved in the categorization process.

Currently CFS is classified under Symptoms and Signs, Malaise and Fatigue, and
the Coalition proposes moving CFS to Diseases of the Nervous System. Post
Viral Fatigue Syndrome is currently classified as Other Disorders of the
Brain, and the Coalition proposes moving PVFS to Diseases of the Nervous
System also. ME is currently referred to as Benign Myalgic Encephalomyelitis
and the Coalition proposes to redefine ME as Myalgic Encephalomyelitis
(benign). The major point here is that ME is anything but benign to one who
suffers with it, but the WHO and the NCHS insist on keeping the word benign
because ME does not lead to imminent death. [Ed. note: perhaps non-fatal
would be a better descriptor than benign!].

The proposals take CFS and PVFS out of the just fatigued category and separate
them from psychological disorders that also cause fatigue; they would bring the
USA into alignment with the WHO classifications already in effect in Canada and
Germany; and they support the recommendation of our CFS Advisory Committee to
the Department of Health and Human Services.

If asked to support the Coalition 4 ME/CFS, please give their proposals careful
consideration!

Posted on October 8, 2011 by Charles W. Lapp, MD (Hunter-Hopkins Center, P.A.)

http://drlapp.com/news/iacfs-2011-summary/

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

My question/response:
[Dr. Lapp's conference summary and the Coalition 4 ME/CFS session on ICD code changes
Dr. Lapp IACFS conference summary
http://drlapp.com/news/iacfs-2011-summary/ ]

This is the only mention I've seen anywhere about the Coalition 4 ME/CFS
presentation/session from the conference.

I have seen NOTHING in any of the Coalition 4 ME/CFS material about
moving PVFS or any concern or mention of removing benign from the
term benign Myalgic Encephalomyelitis. All I've seen on various message
boards is that the Coalition 4 ME/CFS requests have nothing to do with
ME and ME was NOT included in their proposal requests because
they did NOT ask for any changes.
[NCHS topic packet:
http://www.cdc.gov/nchs/data/icd9/To...rSept2011a.pdf
The Coalition's proposal Option 1 does not mention ME]

If this is what they asked for then it should have been listed with
request for changes noted as they were very specific in the
NCHS write up.

This Coalition 4 ME/CFS has extensive information on a separate
website with announcements, press releases, etc so hardly
seems like it would be error or oversight.

And claims that their proposal takes CFS out of the just fatigued category?
All this about beating the CFS isn't chronic fatigue drum? That's the best
you've got? OK I doubt it and this has not occurred in other countries
that have done this exact same thing so I don't think so.

Why the discrepancies?

Jill McLaughlin

-----

October 17th, 2011, 10:30 PM #2
medfeb
Member
Join Date
Nov 2010
Posts
37

Jill,

I know that you have reviewed the proposal and have read earlier posts so I am sure you already know most of this but I'll post for the benefit of others...
snip

The proposal also did not contain a recommendation to change the term for 'benign myalgic encephalomyelitis'. But in the NCHS meeting on Sept 14, 2011, someone from the audience (not affiliated with the Coalition or the CFSAC) recommended that the term 'benign myalgic encephalomyelitis' be renamed to 'myalgic encephalomyelitis (benign)' since there is nothing benign about ME. I asked a followup question on whether the term 'benign' could just be dropped and was informed that WHO standards would not allow that kind of change to be made.


---------

October 18th, 2011, 09:31 AM #3
Jill McLaughlin
Senior Member
Join Date
Mar 2011
Posts
106

I do not think that a rehash of the same generic code info will benefit others. What you say you
want or intend is not what this change will actually do.
snip

We have heard NOTHING from the conference on the Coalition's presentation of ICD code
changes other than this. So I doubt that Dr. Lapp made this up. This was his conference
summary. *He would present as part of his conference summary a general comment
made during a follow-up Q&A from an audience member who was not with the
coalition *when he was NOT even at this NCHS meeting? I do not think so.


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

October 18th, 2011, 11:24 AM #6
Jill McLaughlin
Senior Member
Join Date
Mar 2011
Posts
106

But wait, the story changes again. Mary just said in her direct response to me that it was
an audience member unaffiliated with the coalition who asked asked about the benign
ME changes after the presentation was made.

This is what is stated in the FAQ (read quickly before it changes):
http://coalition4mecfs.org/ICDFAQ.html
15. What is the coalitions position on the term benign myalgic encephalomyelitis?
A. In the oral presentation made to the committee, Mary Dimmock asked that the word benign be removed from the ME listing, as there is nothing benign about this illness. However, the administrator said it must remain as that is the way it is listed in the WHOs ICD-10. One committee member suggested that the word benign be put in parenthesis after myalgic encephalomyelitis. The coalition does not consider this the best option, but it is preferable to benign being in front of myalgic encephalomyelitis.

The term benign myalgic encephalomyelitis came about to indicate the illness does not lead to imminent death. The coalitions position is that the word benign can be misleading and trivializes the severity of the symptoms.

-----
My comment:
Nice that they're so concerned about the word benign being misleading and trivializing but not about linking it to CFS.
Guess that's not.

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

October 18th, 2011, 12:02 PM #7
medfeb
Member
Join Date
Nov 2010
Posts
37

Jill,

If you are really interested in knowing what was actually said at the Sept 14 NCHS meeting, you can listen to the audio - at 2:54, you will hear an audience member suggesting that the word 'benign' be moved to the end of ME and put in parenthesis. Then at 3:07, you will hear my followup question as to whether benign can be dropped versus just putting the term into parentheses. You will also hear that I explicitly acknowledge that the proposal did not include a request to change the term 'Benign ME' but that I wanted to follow up on the earlier speaker's suggestion.

The link to the audio is here
http://www.cms.gov/ICD9ProviderDiagn...ting_Audio.zip


--------------------------------
October 18th, 2011, 01:14 PM #8
Jill McLaughlin
Senior Member
Join Date
Mar 2011
Posts
106

Dr. Lapp's summary was questioned with regard to the proposal made to NCHS, then your response made no sense. Then the FAQ said something completely different, so NOW if you REALLY want to know what happened....
I would like the truth to begin with but guess that's not an option.

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


(Then Tina comes on with oh my bad but it's just splitting hairs *and I'll adjust the FAQ (again....) **And note that in my original message I duly noted "read quickly before it changes."

--

Jill,
You were given the facts regarding what was said by who during the Sept 14 NCHS meeting on dropping the term 'Benign' from 'Benign Myalgic Encephalomyelitis'. You dismissed what was said, not believing that someone in the audience not related to the coalition made the initial suggestion. I replied with the specific timeline of the audio where the discussions occurred so you could hear for yourself who said exactly what and when.

Please point out exactly where in that exchange I was not honest.
Mary
 

Jill McLaughlin

Senior Member
Messages
196
Mary wrote, will answer directly:


Mary - "- CFS is currently listed in 'Signs and Symptoms' under 'Chronic Fatigue' of all things. I cant think of a worse place unless CFS were to be listed under Neurasthenia."

That's what it is. Codes won't change it. For proof, they haven't made any difference in other countries.

Mary - "- ME will not be replaced by CFS. Both terms will still exist along with PVFS which is actually the lead term at G93.3. ME will be listed under it and CFS will just point to it."

Does not sound like what the proposal said. Your proposal had them together at G93.3.

Mary - "(Technically CFS is just in the alphabetic index while PVFS and ME are in the primary index called the alphabetic index).

Could you explain or clarify? CFS is in the alphabetical but ME and PVFS is in the primary index called the alphabetical index? Then what/is there a difference?

Mary - "The doctor can pick any one of them."

Not if they are the same code which is what the Coalition proposal presented to NCHS.

Mary - "- According to testimony at the National Center for Health Statistics (NCHS) Sept 14 meeting, ME appears to be only very rarely used in the U.S. In fact, no one at the Sept 14 meeting had seen it be used.

This is the problem and what is wrong with the system which rather than correct you just perpetuate it and make it official.
You are creating the problem rather than solving it.

Mary - "Patients in the U.S. who meet ME-ICC are diagnosed with CFS."

No, now people are - or can be - diagnosed with ME. You do not have the right to interfere. But if CFS is coded to ME which is what you want, what you say will be true and as we've said the ME-ICC will be for naught. But although people are diagnosed with ME, it is just not well known, AND not as common as the CFS construct, which can pretty much be anything that anyone who is too lazy to look into can come up with.

Mary - "- at the May 2011 CFSAC meeting, the committee had an extensive discussion about whether they were allowed to present their recommendation to the NCHS. It does appear that there are barriers that make it difficult or impossible for the CFSAC to present their own recommendations. One of the members pointedly looked out at the audience and suggested that the public would not have the same conflict of interest if they were to submit the proposal."

I do not know if the committee could do this. Why didn't they ask the federal committee officer.

Mary - "- It has been suggested that moving CFS away from 'Chronic Fatigue' and placing it at G93.3 will make ME disappear and/or turn it into a psychological illness. I don't see how repointing CFS will have this impact on ME especially when the doctor can select ME as a term."

If you don't see it then this is the problem. Hint: this is what Wessely does. So what you said is that they can use the term - but it will be CFS. If you truly just did not understand this then perhaps you shouldn't have done this.

Mary - "But I can see how continuing to have patients that meet ME-ICC criteria categorized against 'Chronic Fatigue' and not recognizing them as suffering from a neurological disease will cause real harm to those patients."

So what would not be just as bad is to have them dx with ME. Not CFS. But you have eliminated that possibility. CFS can include patients with depression and mental problems. It will just now *officially* throw ME patients in with it. But this is what you believe as all is ME/CFS anyway.

Mary



ANdrew and Nielk

Hope is exactly correct in what she says.

- CFS is currently listed in 'Signs and Symptoms' under 'Chronic Fatigue' of all things. I cant think of a worse place unless CFS were to be listed under Neurasthenia.

- ME will not be replaced by CFS. Both terms will still exist along with PVFS which is actually the lead term at G93.3. ME will be listed under it and CFS will just point to it. (Technically CFS is just in the alphabetic index while PVFS and ME are in the primary index called the alphabetic index). The doctor can pick any one of them.

- According to testimony at the National Center for Health Statistics (NCHS) Sept 14 meeting, ME appears to be only very rarely used in the U.S. In fact, no one at the Sept 14 meeting had seen it be used. Patients in the U.S. who meet ME-ICC are diagnosed with CFS.

- at the May 2011 CFSAC meeting, the committee had an extensive discussion about whether they were allowed to present their recommendation to the NCHS. It does appear that there are barriers that make it difficult or impossible for the CFSAC to present their own recommendations. One of the members pointedly looked out at the audience and suggested that the public would not have the same conflict of interest if they were to submit the proposal.

- It has been suggested that moving CFS away from 'Chronic Fatigue' and placing it at G93.3 will make ME disappear and/or turn it into a psychological illness. I don't see how repointing CFS will have this impact on ME especially when the doctor can select ME as a term. But I can see how continuing to have patients that meet ME-ICC criteria categorized against 'Chronic Fatigue' and not recognizing them as suffering from a neurological disease will cause real harm to those patients.

Mary
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I believe that the Lake Tahoe outbreak is myalgic encephalomyelitis. I believe I suffer from myalgic encephalomyelitis. I think most of us suffer from myalgic encephalomyelitis. Our illness should have been myalgic encephalomyelitis all along, not chronic fatigue syndrome. That term "chronic fatigue syndrome" was motivated by some uncaring unthinking "professionals" because they didn't believe the Tahoe cluster was a real illness.

So renaming the term from chronic fatigue syndrome to myalgic encephalomyelitis would be the ideal thing to do. People in this country who believe chronic fatigue syndrome is a different illness are wrong. There is no different illness. It is all myalgic encephalomyelitis. And the problem now with the names is the politics, the red tape and the insurance.

Now, what about people who do not have the full ME pattern but something close. They either have ME that has not fully manifested its symptoms or they have a different illness that's undiagnosed or not yet described.

And btw, there is such a thing as chronic fatigue (not syndrome). This is a symptom of a variety of illnesses.
 

Jill McLaughlin

Senior Member
Messages
196
Renaming CFS as ME will make ME a fatigue syndrome. (Hint: this is what Wessely does.)
This is what the code changes will do. Terms will be synonymous.

Playing the CFS isn't chronic fatigue game is just a waste. Think it will register?
Chronic fatigue is I'm tired all the time. CFS is I'm tired all the time and want to
make a big deal about it. CFS is a syndrome associated with chronic fatigue.



I believe that the Lake Tahoe outbreak is myalgic encephalomyelitis. I believe I suffer from myalgic encephalomyelitis. I think most of us suffer from myalgic encephalomyelitis. Our illness should have been myalgic encephalomyelitis all along, not chronic fatigue syndrome. That term "chronic fatigue syndrome" was motivated by some uncaring unthinking "professionals" because they didn't believe the Tahoe cluster was a real illness.

So renaming the term from chronic fatigue syndrome to myalgic encephalomyelitis would be the ideal thing to do. People in this country who believe chronic fatigue syndrome is a different illness are wrong. There is no different illness. It is all myalgic encephalomyelitis. And the problem now with the names is the politics, the red tape and the insurance.

Now, what about people who do not have the full ME pattern but something close. They either have ME that has not fully manifested its symptoms or they have a different illness that's undiagnosed or not yet described.

And btw, there is such a thing as chronic fatigue (not syndrome). This is a symptom of a variety of illnesses.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
No it won't it, will be chronic fatigue syndrome also known as ME. Read the
Coalition or Pandora's info. They state this over and over. I think this is what
has been giving the wrong impression.

We were talking about CFSAC. But if you want to cover this too, it would be nice to see a quote and a link.