Opposition to the Coalition 4 ME/CFS Proposal

[Bob]

Bringing CFS in line with ME has just as good chance of the ME being dropped or the ME criteria being dropped so that we get an ME label with Reeves criteria.

And equally, leaving things as they are (i.e. CFS is not reclassified) has the danger of ME being continued to be completely ignored, as it is now.

Nobody is ever going to feel comfortable with CFS. It's got way too much baggage. We've had 25 years to get comfortable.

But you are advocating for the status quo, where CFS and ME remain separate.
So why do you think that everything will suddenly and drastically change now, if the classifications remain unchanged?

I would argue the best course of action is to encourage adoption of the ICC criteria wherever and whenever possible.

Agreed.

Changing CFS code numbers is like re-arranging deck chairs on the Titanic.

Yep, I tend to agree. I these discussions are over-egging the ICD's importance.
I think more change will come about from other avenues of advocacy.

 

[Jill McLaughlin]

Bob, But if it's reclassifying CFS and presenting to the CFS committee, it is still about CFS,
not ME, and CFS agenda would be more appropriate. Help may be relative, but this
is not about ME.

But Bob has a good idea. We could present evidence or set up a page for documentation.
I question some of what the coalition has presented as the basis for their position.

That's your opinion Jill, which you are entitled to. But you don't have any evidence to back up this opinion, any more than anyone has any evidence to back up the oposing opinion.
So why don't we keep the discussion about the issues, rather than getting personal?
If do you have evidence to back up your claims, that i'm obviously not aware of, then please share it.

 

[eric_s]

I'll ask Cort, myself.

@ Cort

Thank you for responding to my request for an explanation for the removal of your article about the C4ME/CFS initiative and its associated thread.

There was another question in that thread which you have yet to address and it was this:

What was your rationale for signing the Phoenix Rising name up to the initiative (an initiative which I support in principle) but not informing the members of Phoenix Rising that the C4ME/CFS, of which PR is a member, had undertaken this initiative until just a day or two before the ICD-9-CM Coordination and Maintenance Committee meeting took place, rather than back in May/June/July when the initiative was being developed?

Why has this initiative been undertaken without transparency? Are you comfortable with the lack of transparency and how do you justify the lack of transparency?

What I am interesting in establishing is: what is the mechanism going to be for members of PR to discuss and input into future initiatives undertaken by other organizations or the C4ME/CFS in the name of Phoenix Rising and why was no mechanism in place for this initiative from which the membership was not only disenfranchised from input but also left uninformed about the initiative until the 11th hour?

Suzy

I agree with you that it would be good if there is as much transparency as possible. Me, personally, i didn't feel bad about how this was done, but i understand people feel differently about such an issue.

Just one point, from a legal perspective the users of the Phoenix Rising forums are not really members of the organisation Phoenix Rising. I don't know exactly what Phoenix Rising is, since it became a "true" charity with 501 (c)(3) status, and i don't feel like trying to find out now, if it is a foundation, association or whatever. So i don't know if there are any members at all. But the forum users are basically "only" people using a service provided by the organisation. And it's not the only service Phoenix Rising is offering. That does not mean us forum users are not important of course, without a large number of forum users and readers Phoenix Rising would be much less relevant. I'm just saying this because i think there's a different relationship between Phoenix Rising and the users of the Phoenix Rising forum compared to the directors of an association and the association's membership, for example.

 

[Jill McLaughlin]

I don't always (well, usually!) agree with Cort but have generally found him to be fair.

I agree with you that it would be good if there is as much transparency as possible. Me, personally, i didn't feel bad about how this was done, but i understand people feel differently about such an issue.

Just one point, from a legal perspective the users of the Phoenix Rising forums are not really members of the organisation Phoenix Rising. I don't know exactly what Phoenix Rising is, since it became a "true" charity with 501 (c)(3) status, and i don't feel like trying to find out now, if it is a foundation, association or whatever. So i don't know if there are any members at all. But the forum users are basically "only" people using a service provided by the organisation. And it's not the only service Phoenix Rising is offering. That does not mean us forum users are not important of course, without a large number of forum users and readers Phoenix Rising would be much less relevant. I'm just saying this because i think there's a different relationship between Phoenix Rising and the users of the Phoenix Rising forum compared to the directors of an association and the association's membership, for example.

 

[Bob]

Bob, But if it's reclassifying CFS and presenting to the CFS committee, it is still about CFS,
not ME...

I think that's far too simplistic an argument Jill.

If most ME patients currently have a CFS diagnosis (and my guess is that 99% of US ME patients have a CFS diagnosis), then reclassifying CFS would bring those ME patients (currently diagnosed with CFS) into a neurological classification. Sure it also brings some non-ME chronic fatigue patients into a neurological classification as well, but the current system has not worked for 25 years. So I don't understand the strength of feeling behind advocating to keep the current system in place. It hasn't worked.

To leave CFS as it is, and to advocate carrying out research into 'ME' using the ICC, it could possibly take another 25 years to get ME taken seriously by the US government.

There is something posted on another thread (that I haven't fully read yet) about proposals to have two types of CFS. A neurological CFS, and a NOS CFS. This in some ways makes most sense, given the current situation we are in:
http://phoenixrising.me/forums/show...ernmental-Body&p=206217&viewfull=1#post206217

 

[Dx Revision Watch]

If people like Suzy are trying to get CFS reclassified as ME, this is only helping those
with CFS, not ME. Thus, be honest and call it CFS agenda. This is not childish. If the
truth is discomforting it is not my fault. CFS is not neurological by definition and
this will only harm and diminish those with ME, not "help" those with CFS.

Please do NOT put words into my mouth, Jill.

Nowhere have I said that I am "trying to get CFS reclassified as ME".

And you have been asked several times already to drop this tiresome "Suzy should call herself 'CFS agenda' not 'ME agenda'.

Will you please stop it now or I shall be obliged to ask a moderator to step in and ask you to stop it.


My position is this (and I have already set this out and I do not intend to set it out again):

I consider that it will hurt patients if CFS remains coded under "Symptoms, signs and ill-defined conditions".
I consider that CFS should be coded in Chapter 6, in line with ICD-10, ICD-10-CA, ICD-10-GM and proposals for ICD-11.
I consider that coding CFS in the R codes will render patients more vulnerable to the DSM-5 proposals for "Somatic Symptom Disorders".


I repeat: nowhere have I ever said that that I am "trying to get CFS reclassified as ME".

I hope that is understood.

I really do not understand what you hope to achieve by these repeated digs at me and I am rapidly running out of patience.

 

[Bob]

Nowhere have I said that I am "trying to get CFS reclassified as ME".

This is an important point that I think has been missed in this discussion.
CFS and ME will still be separate entities under the immediate proposals of reclassifying CFS.
They will both be categorised as neurological, but not merged into one illness.

 

[Bob]

Here's a very interesting couple of posts written by WillowJ:

http://phoenixrising.me/forums/show...ernmental-Body&p=206217&viewfull=1#post206217

http://phoenixrising.me/forums/show...ernmental-Body&p=206348&viewfull=1#post206348

I was unaware of these previous proposals by the CDC.

 

[Jill McLaughlin]

That is exactly the argument.

But to your comments:
If most ME patients have a CFS dx then those with an "ME agenda" would be pushing
towards recognition and awareness for ME, not keeping us all wrapped around the
CFS axle.
But many with a CFS dx do not have ME and can have many various different conditions.
They do not belong together as ME is a well defined disease with objective criteria
while CFS is a waste basket dx of exclusion that has subjective vague criteria which
can include people with unwellness or any fatigue state.

The current system is diagnosing ME as CFS, which as you said, the current
system does not work.

I think that's far too simplistic an argument Jill.

If most ME patients currently have a CFS diagnosis (and my guess is that 99% of US ME patients have a CFS diagnosis), then reclassifying CFS would bring those ME patients (currently diagnosed with CFS) into a neurological classification. Sure it also brings some non-ME chronic fatigue patients into a neurological classification as well, but the current system has not worked for 25 years. So I don't understand the strength of feeling behind advocating to keep the current system in place. It hasn't worked.

To leave CFS as it is, and to advocate carrying out research into 'ME' using the ICC, it could possibly take another 25 years to get ME taken seriously by the US government.

There is something posted on another thread (that I haven't fully read yet) about proposals to have two types of CFS. A neurological CFS, and a NOS CFS. This in some ways makes most sense, given the current situation we are in:
http://phoenixrising.me/forums/show...ernmental-Body&p=206217&viewfull=1#post206217

 

[Guido den Broeder]

Guido, if you are advocating that CFS and ME should remain separate, and CFS should remain non-neurological, then that's been the case in the USA for the past 25 years. It hasn't got us far.

I am advocating that CFS should disappear altogether.

Cheers,

Guido

 

[Bob]

That is exactly the argument.

But to your comments:
If most ME patients have a CFS dx then those with an "ME agenda" would be pushing
towards recognition and awareness for ME, not keeping us all wrapped around the
CFS axle.
But many with a CFS dx do not have ME and can have many various different conditions.
They do not belong together as ME is a well defined disease with objective criteria
while CFS is a waste basket dx of exclusion that has subjective vague criteria which
can include people with unwellness or any fatigue state.

The current system is diagnosing ME as CFS, which as you said, the current
system does not work.

And the system that you are proposing does not guarantee that ME patients will get either an ME diagnosis or research funding.
Your proposal to keep CFS categorised as a non-neurological illness gives no guarantees for a better deal for ME patients.

Actually, I don't think the answers lie within the ICD system.
I think that the answers lie in getting wide recognition for a proper diagnostic criteria for ME (e.g. the ICC), and getting ME recognised as a distinct disease. So I think we are agree on that. But the ICD system is not going to give us either, and whatever is done with the ICD classifications, both ME and CFS can still be entirely manipulated by the authorities.

To me, the current options on the table, with regards to the ICD, seem to be the following:
1. Leave everyone who has ME, but with a current diagnosis of CFS, in the non-neurological category, and hope that someone will one day take them seriously and give them an ME diagnosis.
2. Move everyone who has ME, but with a current diagnosis of CFS, into the neurological category, and hope that patients with a non-ME fatiguing illness (i.e. those who do not fit the ICC) will one day be taken seriously and given a proper and fitting diagnosis.

Neither seems like a perfect option.

But it seems to me that option 2, at least gives ME patients (as fit the ICC but with a CFS diagnosis) the best hope, as everyone who has ME but a CFS diagnosis, will then at least be treated as having a neurological disease by insurance companies. CFS and ME would still be classified as separate entities. So the next step would be to push for the use of tighter diagnostic criteria, such as the ICC.

The ICC seems to say that there is an overlap between CFS and ME, and seems to suggest that there should be a name change from CFS to ME. So your opinions do not coincide with the authors of the ICC. Maybe you think the authors of the ICC have a "CFS agenda"?:

The label chronic fatigue syndrome (CFS) has persisted for many years because of
lack of knowledge of the etiological agents and of the disease process. In view of
more recent research and clinical experience that strongly point to widespread
inflammation and multisystemic neuropathology, it is more appropriate and correct to
use the term myalgic encephalomyelitis(ME) because it indicates an underlying
pathophysiology.

 

[Bob]

Correct me if I'm wrong, but aren't we talking about the ICD-10-CM, which is unique to the US, not the ICD-10 which is the WHO document used internationally?

Yes, that's right.

 

[Bob]

And isn't CFS already referenced to neurological conditions in the ICD-10?

Yes, that's right.

CFS is in only in the index of the international version, and it links only to ME which is classified as neurological.
But being in the index doesn't mean that CFS has been given a classification, as far as I understand. All it means is that if you look up CFS in the index, you are taken to the ME section. So CFS doesn't exist as a distinct entity in the international version.

 

[rlc]

Cort any further attempts by you and the Phoenix Rising site to delete or alter anymore of my, or anybody elses posts will result in Legal action being taken. It is illegal to breach peoples Freedom of Speech!!! Your actions will also be reported to the IRS, you are claiming 501-c-3 tax exemptions under the guise that you are representing ME and CFS patients, you are not, your imposing censorship on the people you are claiming to represent and who you are taking donations from!

Moderator: Please take a moment to read the forum rules you agreed to upon registration, which states in part:

We reserve the right to edit posts, remove offensive posts without notice. Also while these rules cover most common situations, they cannot anticipate everything. Consequently we reserve the right to take any actions we deem appropriate to ensure these forums are not disrupted or abused in any way.

Your actions by signing the Phoenix Rising name to the coalition 4 ME/CFS proposal without consulting with the people that you are falsely claiming to represent and taking donations from, will also be reported to the IRS, do I make myself clear!!

Every single person here who objects to what you have done, can report their complaint to the IRS.

And under US Government law covering 501-c-3, Phoenix Rising has to make available all its financial dealings to its members who request the information, and if they are upset in any way about how their donations are being spent, such as if any donated money has been spent on organising the Coalition 4 ME/CFS proposal, they can report it to the IRS.

*****

How to lodge complaints you have to the IRS related to 501-c-3 can be found here http://forums.whyweprotest.net/threads/how-to-file-an-irs-501-c-3-complaint.29119/

*****

Moderator: Content removed breaching the following forum rules:
Attacking someone's character
Critiques of individuals or organizations should be done in the spirit of constructive discourse; simply dumping on a person or organization is not conducive to the kind of conversation we strive for.

Additionally, linking to removed information is not acceptable. You have already been asked to respect the action taken in this regard.

*****

Everybody who has ME, and/or wants to get rid of CFS forever, do everything you can to fight this proposal!!!!! It will mean that you are stuck in the same position as you have always been with no hope of a cure. And fight all these organisations that have sneaked behind your back, and done this to you without you knowing. You have till October the 7th to send comments to oppose it, here

Submissions have to be sent to this person at the CDC

Please email, telephone or fax Donnamarie Pickett before Oct. 7
Last name Pickett
First name Donnamaria
Agency CDC
Organization DHHS/CDC/OSELS/NCHS/OD/CPHDSS
Job title MEDICAL SYSTEMS ADMINISTRATION
Building HYAT
Room NCHS
Duty station Hyattsville MD 20782
Phone 301.458.4434
Fax 301.458.4022
Internet e-mail donnamaria.pickett@cdc.hhs.gov

All the best

 

[Angela Kennedy]

OK. I am pulling out of this thread. Jill's MO is not simply conducive to reasoned debate.

Suzy Chapman
http://dxrevisionwatch.wordpress.com
http://meagenda.wordpress.com
http://www.facebook.com/MEagenda
http://twitter.com/MEagenda

I agree. I've had the same problem over on ME/CFS forums. There are a number of reasons that separating ME from CFS is extremely dodgy AT THIS STAGE IN TIME.

These are related to research findings using CFS cohorts, the various criteria like the CCC and ICC and how these may be under attack by the drive to separate CFS from ME at this stage, and yes, the patients left to rot in either an R category or the F48 category (where Wessely wants you all with neurasthenia- yes he has been working for that), in addition to Suzy's comments.

Over on ME/CFS forums, Jill exhibited a marked callousness towards people who don't get given an ME diagnosis- basically treating them as collateral damage.

Because this is such an important issue, because Jill McLaughlin is relentless in her ad hominem attacks on people and does seem to have had some success in promoting an extremely simplistic and ill-thought out belief system about the term CFS over the years, I am speaking out, even if somehow someone will consider this all 'uncivil' or an attack on Jill McLaughlin.

Sadly it is impossible to moderate her modus operandi. She is relentless, and I am not in a position to be trading insults with her all day long, or trying to argue with her rationally, because her m.o. precludes that.

All I can say is this drive to separate the two terms at this time is picking a scab that will cause a mighty bleed for this community, for various reasons.

 

[Dainty]

Sorry, everyone. Health matters made me unavailable for a time.

Locking for the moment to sort things out - thank you for your patience.

 

[Dainty]

Moderator: Thread re-opened.

Several posts have been removed for readability of the the issue at hand. Please be considerate of those with limited mental energy by posting with care.

Further personal comments against any member will be removed without warning.

A reminder from our forum rules:

A good sign of a discussion going south is when a thread shifts from focusing on an issue to personal attack. We are dealing with volatile issues but knee-jerk personal responses can quickly send a discussion veering towards disaster with recriminations lasting long after the actual discussion ends; feelings are hurt, friends are no longer friends, and the forum ceases to be a safe place for all to engage in. Eventually the Forum becomes, if not dominated, at least tainted by overly aggressive individuals, and people with quieter voices flee to safer pastures. Please keep the focus on the facts of the topic at hand - not the person delivering it.

 

[ukxmrv]

SickofCFS,

You are right to be wondering why there has been so much comment from people in the UK.

The proposed changes to the USA ICD-10 has hit a nerve with some UK ME and CFS activists. We have had an ongoing argument over the whole what is ME and what is CFS for a long time now. It reopened the debate once again.

 

[eric_s]

I just read an email i got from the IMEA with their position on the coding issue and their proposal. I think you can read it on their website.

While i have had some arguments with people leading the IMEA or close to the IMEA in the past i like their position. They propose to have 3 separate codes under G93.3. One for PVFS, one for ME, and one for CFS.

I think this would be the best option, what the Coalition 4 ME/CFS proposed second best, and keeping the status quo would be a bad choice, because of the risks mentioned here in this thread.

 

[Bob]

Thanks. That was what I thought, but there seems to be a lot of anger from some of our international friends about a document that substantially effects the situation of US patients, who are almost exclusively labelled CFS, but has very little effect on our international cohort. I thought maybe I had missed something major.

Yes, I see what you mean. It doesn't quite seem right that people outside the USA are trying to tell people within the USA how their lives should be run. Especially as people outside the USA might not have a full picture of the political, medical and personal situations within the USA.

But unfortunately, everything that happens in the USA affects the rest of us in a massive way because the rest of the world tends to follow what the USA does. And the bulk of the research goes on within the USA. There has been no biomedical research funding coming from the UK government over the past few years for example.

What's the saying?
"America sneezes and the world catches a cold."