Next CFSAC meeting date has been announced for November 8, 2011

[Jill McLaughlin]

That's nice, but PEM is optional in CFS, meaning not all CFS patients have PEM.

It would be nicer if it were not about what anyone believes but what is provable. Maybe it does or maybe it does't isn't very compelling or reassuring.

If you call a tail a leg, how many legs does a dog have? 4, because calling a tail leg doesn't make it a leg.

Because PEM is a noticeable symptom in patients with CFS, the Lights with Bateman went to find out why. Their study, of Fukuda CFS patients, found biological abnormalities showing why CFS patients have PEM.

Notice, this study is in CFS patients, not ME-labeled patients. Now, I believe it is the same disease. But if it isn't, this this study does not apply to ME patients. http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers/

Tina

 

[Jill McLaughlin]

This is a much more specific medical diagnostic concept than fatigue. Fatigue is a symptom, not an illness.

All neurological illnesses can have fatigue as a symptom, but NONE could be defined based on fatigue and 4 other minor non specific symptoms.
CFS can include non-neurological conditions as well and thus does not even support classifying CFS as neurological, let along the same as ME.
This proposal is scientifically non supportable.

Earlier you also wrote, Fatigue is not even a defining feature of ME.

I can't reconcile your claims with the following ME-ICC statement: ...the primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion (italics added).[/QUOTE

 

[Dolphin]

According to Dr. Byron Hyde, "the more recent Canadian definition (CCC) talks of ME/CFS as though they were the same illness. They are not."

[http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf]

It would be good if Byron Hyde published in peer-reviewed journals more.

Currently he hasn't left much of a legacy [except maybe convincing people that the tests he mentions can diagnose ME with 100% sensitivity (or very close to it), without there being that much published evidence that I am aware of].

 

[Ember]

This is a much more specific medical diagnostic concept than fatigue.

Of course PENE is a much more specific diagnostic concept than simple fatigue. But that statement no longer supports your earlier argument that ME-ICC cannot be considered a subgroup of CFS.

Personally, I find it difficult to imagine a patient meeting the ME-ICC criteria and not also meeting the CFS (Fukuda) criteria. It's easy, on the other hand, for me to imagine the converse, a patient meeting the CFS (Fukuda) criteria, yet failing to meet the ME-ICC criteria.

 

[beaker]

I disagree. I think there is only one illness: Myalgic Encephalomyelitis (ME). The Tahoe cluster is ME. Fukuda didn't understand this and gave it a new name and incorrect description. Reeves watered it down further in search of a cohort to fit an incorrect description.

The term "ME/CFS" is an attempt get people used to the idea that there is a connection between ME and people who are diagnosed with CFS. ME-ICC is an attempt to complete the process, and put CFS people back into the ME category where they belong.

ME is not a subset of CFS. ME is the whole enchilada. And fwiw, the ICC provides for people who don't fit the full criteria, with a second diagnosis of atypical ME. This means researchers can focus the research, and the less symptomatic people don't get cast aside.

Andrew, I think you explained it well.
I think the problem of the terms that goes round and round on many threads here is that those outside the USA do not fully understand what happened here and how people have been ( and still are) dx'd. Not to mention that the majority of the medical community in the US, even those who are well respected ME/CFS specialists (including authors of the ICC) , still often use the term CFS or CFIDS to mean the same as ME. Don't believe me-- check their websites and their medical publications.

 

[justinreilly]

Good points Jill. I think others have made good points as well.

So if ME and CFS are two separate diseases, then are they on the same continuum? That begs the unknown etiology question which I believe is in fact part of the problem.

OK, here is a thought, if in fact ME and CFS are on a continuum, then instead of ME/CFS we should probably use ME+CFS. That would indicate the close relationship yet distinction. I have no doubt the reality is far more complex, both ME and CFS are just a working definitions. They will both disappear someday. But I hear you, the problem is that studies tend to focus on various subsets, some on CFS without PEM, others on CFS+PEM, some on ME, some on ME+CFS, the situation is such a mess.

As long as CFS is defined to include PEM, which is evidence of a neuroimmune/ neuroendocrine/ mitochondria problem, then I suspect this confusion will continue. In order to separate the conditions as you and others suggest, we would have to redefine BOTH conditions, CFS and ME, so this is not just about ME, it is also about people sick with CFS, where CFS is defined Fukuda (without PEM).

So in an ideal world:

CFS = chronic fatigue with exercise tolerance (patients who benefit from GET)
ME = major neurologic symptoms + PEM (not a fatigue-based illness)
CFS+ME = people with both CFS and ME (thus intolerant of exercise, probably most of the forum members, based on our conversations)

Or something like that.

Definitely must disagree here. ME (and 'atypical ME') should be used exclusively. "CFS" thrown in the garbage. The illness you are denominating here "CFS" is just Idiopathic CF and should be called that. We need much more valid research on ICF and people with ICF need to be treated better, but that doesn't mean we should use the confusing and harmful term "CFS."

 

[Jill McLaughlin]

Perhaps it is not meaningful to lay people but it is significant to drs and neurologists. This is NOT just fatigue. No more than calling diabetes chronic peeing syndrome. Almost anything can meet the Fukuda criteria it is so broad. So we're mixing in with anything that can share the vague immeasurable symptom of fatigue.

For years people did anything to get away from a CFS diagnosis, suddenly it is somehow desirable?

They can continue to reinvent and redefine the made up patchwork ME/CFS. They'll trot out some "good research" from the ME part, enough to sell patients hope. But can then can flip back to the CFS part. So we'll never know and cannot prove anything. So no real progress. ME/CFS is our ponzi scheme.

Of course PENE is a much more specific diagnostic concept than simple fatigue. But that statement no longer supports your earlier argument that ME-ICC cannot be considered a subgroup of CFS.

Personally, I find it difficult to imagine a patient meeting the ME-ICC criteria and not also meeting the CFS (Fukuda) criteria. It's easy, on the other hand, for me to imagine the converse, a patient meeting the CFS (Fukuda) criteria, yet failing to meet the ME-ICC criteria.

 

[snowathlete]

CFS+ME = people with both CFS and ME (thus intolerant of exercise, probably most of the forum members, based on our conversations)

This matches me exactly, i have this diagnoses and symptoms. Im not arguing either corner here by the way, im just stating my situation. Personally, i know i dont have two illnesses, i have one, but i do seem to have been given both labels. I dont know if thats good or bad.

 

[Ember]

Perhaps it is not meaningful to lay people but it is significant to drs and neurologists. This is NOT just fatigue. No more than calling diabetes chronic peeing syndrome. Almost anything can meet the Fukuda criteria it is so broad. So we're mixing in with anything that can share the vague immeasurable symptom of fatigue.

For years people did anything to get away from a CFS diagnosis, suddenly it is somehow desirable?

They can continue to reinvent and redefine the made up patchwork ME/CFS. They'll trot out some "good research" from the ME part, enough to sell patients hope. But can then can flip back to the CFS part. So we'll never know and cannot prove anything. So no real progress. ME/CFS is our ponzi scheme.

A world of ME elites has an Alice in Wonderland feel for me. (I dread finding my significance among the high priests of medicine.) As a pwME, I do see a PENE-less CFS diagnosis as somehow desirable. Better yet, I'd like a diagnosis of normal, though (curiouser and curiouser) almost anything can meet [that] criteria, it is so broad.

I'm an ME-purist only when it comes to the research. Even there, I'd be happy to see multiple cohorts used. Prior to the ME-ICC, the CCC provided us our gold standard, so denigrating ME/CFS has all the appeal for me of yet another rabbit hole.

 

[WillowJ]

Justin is correct.

See, there is sometimes a disconnect between things in a lab--on paper in this case--(or in vitro, if you will), and in real life (in vivo, as we say).

Fukuda-CFS exists on paper (but only at CDC and in ICD-CM, and with whoever uses these--it does not exist at WHO or with any other official body besides USA's CDC).

Fukuda-CFS does not exist in real life. There is nobody who actually has the disease so described. The people the definition was made up after "looking at", had ME. The people who are currently labeled with Fukuda-CFS have all sorts of things; a lot of us have ME, but some have MS, some have Lupus, some have MDD, some have Vitamin D deficiency, the list goes on and on.

The disconnect between the case definition and the disease is described very well by the ME Society of America (point 2 on that page). Key point:

Dorland's Medical Dictionary states that to "diagnose" is to engage in "the art of distinguishing one disease from another." The too-broad Fukuda criteria lump heterogeneous conditions and hence fail in defining a disease.

Oxford-CFS does not exist in real life. "Empiric"-CFS does not exist in real life. These collect people with various random, unrelated, diseases. Here ME patients are almost certainly the minority in the sample (if present at all). (again, they fail to distinguish one thing from another, thus, do not define any condition at all)

Also, it is very important to note that GET does not work for CFS; not only are the studies they use composed mostly of CF (not CFS) patients, the studies also cannot demonstrate, overall, an objective or a long-term benefit to GET even in CF populations.

* * *​

I do not believe all of us in our disease (disease spectrum), whatever one calls it, are necessarily precisely the same. But I do believe we are stronger as a community. We need to have subsets for research purposes, of course! But that doesn't mean we can't work and strategize and fellowship together!

 

[Ember]

I do not believe all of us in our disease (disease spectrum), whatever one calls it, are necessarily precisely the same. But I do believe we are stronger as a community. We need to have subsets for research purposes, of course! But that doesn't mean we can't work and strategize and fellowship together!

Do we need a new organization at this juncture? The ME Society of America hasn't updated its site in two years. (Thanks for the link.)

 

[Jill McLaughlin]

If we do not stop this proposal by the Coalition 4 ME/CFS, it will not matter. ME as a diagnosis will disappear and will make ME and CFS synonymous via ICD coding. The ME-ICC will not matter. ME will be stuck in the fatigue wasteland.
ME is not CFS (see definition of "is")
CFS does not define a neurological illness and there are those with CFS who do NOT have ME, so at least it should be invalid.
Thus their request to combine CFS with ME at G93.3 is scientifically unsupportable.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1111a&L=co-cure&T=0&P=361

ME patients: oppose this proposal ASAP. Deadline is Nov 18, contact: NCHS <nchsicd9CM@cdc.gov>, Donna Pickett <dfp4@cdc.gov>
Patients do not have to enumerate all of the scientific objections, or inaccuracies, just as stakeholders.

Do we need a new organization at this juncture? The ME Society of America hasn't updated its site in two years. (Thanks for the link.)

 

[Jill McLaughlin]

ME is not a spectrum or subset of fatigue. We do not belong. ME is defined by exercise intolerance and post exertional relapse. This is a requirement and we need this as protection against GET, which is recommended for CFS. We do not want to be in a community which is harmful. It is not elitist, just practical. Otherwise is masochistic.

Justin is correct.

See, there is sometimes a disconnect between things in a lab--on paper in this case--(or in vitro, if you will), and in real life (in vivo, as we say).

Fukuda-CFS exists on paper (but only at CDC and in ICD-CM, and with whoever uses these--it does not exist at WHO or with any other official body besides USA's CDC).

Fukuda-CFS does not exist in real life. There is nobody who actually has the disease so described. The people the definition was made up after "looking at", had ME. The people who are currently labeled with Fukuda-CFS have all sorts of things; a lot of us have ME, but some have MS, some have Lupus, some have MDD, some have Vitamin D deficiency, the list goes on and on.

The disconnect between the case definition and the disease is described very well by the ME Society of America (point 2 on that page). Key point:


Oxford-CFS does not exist in real life. "Empiric"-CFS does not exist in real life. These collect people with various random, unrelated, diseases. Here ME patients are almost certainly the minority in the sample (if present at all). (again, they fail to distinguish one thing from another, thus, do not define any condition at all)

Also, it is very important to note that GET does not work for CFS; not only are the studies they use composed mostly of CF (not CFS) patients, the studies also cannot demonstrate, overall, an objective or a long-term benefit to GET even in CF populations.

* * *​

I do not believe all of us in our disease (disease spectrum), whatever one calls it, are necessarily precisely the same. But I do believe we are stronger as a community. We need to have subsets for research purposes, of course! But that doesn't mean we can't work and strategize and fellowship together!

 

[WillowJ]

We have exactly two options at this point.

1) let the USA's health services do their own thing. They will write G93.3 back into the ICD-CM (it has been absent for many years) and call it Post-Viral Fatigue Syndrome (the current description is Fukuda-CFS, but that can evidently change anytime we can convince them to change it). Allow only patients whose doctors are able to demonstrate a specific viral trigger, at the time of onset (likely very few), to be coded here.

Put all other ME patients in the R chapter (vague signs and symptoms, and unspecified [i.e. wastebasket/somatiform] disorders) in a brand-new code called either "Chronic fatigue syndrome, not otherwise classified" or "Chronic fatigue, unspecified", along with patients misdiagnosed with CFS. Everything continues exactly as is for most people. Divides a disease, which is not allowed under WHO rules.

This is a vote for the status quo, the way I see it.

2.) Support the Coalition for ME/CFS's plan. Eliminate the new R code for CFS, NOC or CF, unspecified. Put all ME patients in G93.3 where they will hopefully get appropriate care, disability benefits, and so forth (some misdiagnosed CFS patients may also end up there, but hopefully fewer since the neurological coding should signal to doctors to take more care and look for causes of symptoms, so maybe other people will actually get diagnosed with other conditions, which would be better for them), and keep working on the health services to adopt an appropriate specific definition and serious name.

Use "ME/CFS" as a transition so, for example, people can get/continue disability benefits (there is no provision for people to get disability on the basis of having ME in the USA), and while social services, doctors, researchers learn the new (old) name.

Of course, other than our patient, advocacy, and researcher community, hardly anyone in the entire USA is at all familiar with the term, "Myalgic Encephalomyelitis." This is a good thing in some ways, but they need to be able to connect it to the better CFS research (some of which studied a high percentage of ME patients) and to an actual disease (this pt gets weaker with exertion, etc.)


Those are our only two options. I and some others (Justin and Suzy, for example) have been talking about the problems with the codes for months, but only Coalition 4 ME/CFS made an actionable recommendation to the appropriate Committee.

What we are supporting is the step of being moved to the neurology chapter and being coded G93.3 . The coding is the only thing we can change with the coding committee. The definition and name we need to change elsewhere, with other proposals.

 

[WillowJ]

ME as a diagnosis will disappear

There is no diagnosis of ME in the USA. There has not been for many years. The USA's health services do not now propose to make one (they will call it PVFS). You need to start looking at ICD-11 in order to work on coding for ME (and that needs to be done soon), but the USA's clinical modifications of this won't be implemented (or made, either?) for some time.

 

[WillowJ]

ME is not a spectrum or subset of fatigue.

nobody here is saying that :Retro smile:

 

[WillowJ]

Do we need a new organization at this juncture? The ME Society of America hasn't updated its site in two years. (Thanks for the link.)

This org does not appear to be particularly active, I agree. They have a lot of good info on their website, though. There are other orgs (National Alliance for Myalgic Encephalomyelitis, for example, did update their site recently, but I'm not sure whether they do much besides the site). I'm not sure whether getting a new national org would help or not.

I think possibly networking us all and working through local orgs, like the Coalition 4 ME/CFS and the ME (ME/CFS) Fundraising Group are doing, might be more productive.

What do you think, Ember? (and other kind-hearted people reading the thread) Do you think we need a new national org and, if so, would you help run it or who do you know that you would trust to do that--and who would have the energy? If you don't have a local org, same questions. If you do have a local org, could they use some help? Nobody needs to answer here on the thread, of course. :Retro smile: Just food for thought.

 

[Jill McLaughlin]

Codes should fit the definition, not the other was around. Codes will not change definitions.

None of the CFS definitions define what would be recognized as identifying a neurological disease.

A recent survey of members of a Neurological Association demonstrated that 84% do not view CFS as a neurological illness. ("Chronic Fatigue Syndrome: Labels meanings and consequences," Journal of Psychosomatic Research, 9 April, 2011) The abstract notes that *"this is at odds with the WHO classification." They do not view it as neurological because the definition does not support it as neurological *DESPITE the WHO classification. Codes will not override the definition.

So fudging codes does no good.

A main goal of the Coalition 4 ME/CFS proposal seems to be to differentiate CFS from 'chronic fatigue.' This has been addressed for years. The real solution to the "Chronic Fatigue Syndrome is not chronic fatigue" problem would be to change the name CFS and call it something else. It is not acceptable or even effective to usurp another illness. Throwing ME into the mix in order to change the CFS ICD codes to falsely elevate it or make it sound better will not solve this problem.

Even within the coding system, "Chronic Fatigue" is under signs and symptoms, malaise and fatigue (R53.82), "Fatigue syndrome" is coded with neurasthenia in a Mental Health chapter (F48.0). As is, this overlap and diagnostic confusion with existing terminology is unavoidable and insurmountable.

So this Coalition 4 ME/CFS may not decimate our illness to make CFS sound better, but if they, did it wouldn't work anyway. I am surprised this was not thrown out with all the errors, but should not have been done by patients/lay pple who do not understand the system or process.

We have exactly two options at this point.

1) let the USA's health services do their own thing. They will write G93.3 back into the ICD-CM (it has been absent for many years) and call it Post-Viral Fatigue Syndrome (the current description is Fukuda-CFS, but that can evidently change anytime we can convince them to change it). Allow only patients whose doctors are able to demonstrate a specific viral trigger, at the time of onset (likely very few), to be coded here.

Put all other ME patients in the R chapter (vague signs and symptoms, and unspecified [i.e. wastebasket/somatiform] disorders) in a brand-new code called either "Chronic fatigue syndrome, not otherwise classified" or "Chronic fatigue, unspecified", along with patients misdiagnosed with CFS. Everything continues exactly as is for most people. Divides a disease, which is not allowed under WHO rules.

This is a vote for the status quo, the way I see it.

2.) Support the Coalition for ME/CFS's plan. Eliminate the new R code for CFS, NOC or CF, unspecified. Put all ME patients in G93.3 where they will hopefully get appropriate care, disability benefits, and so forth (some misdiagnosed CFS patients may also end up there, but hopefully fewer since the neurological coding should signal to doctors to take more care and look for causes of symptoms, so maybe other people will actually get diagnosed with other conditions, which would be better for them), and keep working on the health services to adopt an appropriate specific definition and serious name.

Use "ME/CFS" as a transition so, for example, people can get/continue disability benefits (there is no provision for people to get disability on the basis of having ME in the USA), and while social services, doctors, researchers learn the new (old) name.

Of course, other than our patient, advocacy, and researcher community, hardly anyone in the entire USA is at all familiar with the term, "Myalgic Encephalomyelitis." This is a good thing in some ways, but they need to be able to connect it to the better CFS research (some of which studied a high percentage of ME patients) and to an actual disease (this pt gets weaker with exertion, etc.)


Those are our only two options. I and some others (Justin and Suzy, for example) have been talking about the problems with the codes for months, but only Coalition 4 ME/CFS made an actionable recommendation to the appropriate Committee.

What we are supporting is the step of being moved to the neurology chapter and being coded G93.3 . The coding is the only thing we can change with the coding committee. The definition and name we need to change elsewhere, with other proposals.

 

[Jill McLaughlin]

Yes there is. More misinformation. And patients get Social Security, actually mush easier than with a CFS dx.

There is no diagnosis of ME in the USA. There has not been for many years. The USA's health services do not now propose to make one (they will call it PVFS). You need to start looking at ICD-11 in order to work on coding for ME (and that needs to be done soon), but the USA's clinical modifications of this won't be implemented (or made, either?) for some time.

 

[Jill McLaughlin]

You just did. : ) [Retro smile]

"I do not believe all of us in our disease (disease spectrum), whatever one calls it, are necessarily precisely the same. But I do believe we are stronger as a community. We need to have subsets for research purposes, of course! But that doesn't mean we can't work and strategize and fellowship together!"

Originally Posted by Jill McLaughlin
"ME is not a spectrum or subset of fatigue."

nobody here is saying that :Retro smile: