Is it worth explaining the difference between ME and CFS to the public??

[WillowJ]

Historic medical literature on ME states, that there is always CNS dysfunction. Not all persons with a diagnosis of CFS, will have CNS dysfunction and will not have ME.

So CFS is not simply a misnomer for ME.

In fact CFS as defined, is nothing like ME as defined in historical medical literature.

All people with ME/CFS have CNS dysfunction, yes. That's not necessarily the same as MRI lesions or constant SPECT-viewable damage. There could be a test for it which hasn't been well-utilized yet.

When I read the Ramsay descriptions, it looks remarkably like the CCC. I'm surprised you don't see the same remarkable similarity.

Remember, we are not talking about Fukuda as written, or Oxford here. We all agree those are junk that don't define anything nor select any particular disease, especially Oxford and "Empirical". When we talk about "CFS" being the same as ME, we're talking the disease under the sloppy Holmes and Fukuda attempts--the disease Klimas studies with her modifications to Fukuda requiring PEM, the disease Mikovits studies with CCC: distinguished by PEM, cognitive dysfunction, low NK cell function, and oxidative stress.

 

[WillowJ]

Unfortunately,it is not correct to say that CFS is a misnomer for ME and I would suggest to you, despite your reassurances to themoonisblue, that persons with an ME diagnosis (especially those who had one prior to the introduction of CFS) would find this offensive.

have you ever thought that perhaps people not fortunate enough to have proper investigations and a diagnosis of ME (or those who have "real CFS", not CF, but not hfme-approved ME, either), might find it offensive and hurtful to be told that they cannot join the exclusive ME club but instead actually must use the degrading term--the slave name--of CFS, in order to not be on the side of the evil oppressors?

please stop and consider this for a while.

... I'll give you a few minutes to do that...


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who is the enemy here? who is the bad guy?



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the bad guys are the evil Wessely school, the complacent and sometimes complicit government officials, the lazy and sometimes complicit media. not other patents.

please let's fight the real bad guys and not other patients.

let's fight the real bad guys because we can do this, but only if we're not fighting each other. the prize is returning to the use of actual biomarkers, getting everyone a sensible and respected diagnosis of whatever disease they really have (ME, thyroid problems, MDD, vitamin D deficiency, Lupus, cancer, rare diseases, whatever they have that's causing fatigue that isn't being investigated or treated now), and getting our disease funded and studied. we can get there, together.

 

[SOC]

have you ever thought that perhaps people not fortunate enough to have proper investigations and a diagnosis of ME (or those who have "real CFS", not CF, but not hfme-approved ME, either), might find it offensive and hurtful to be told that they cannot join the exclusive ME club but instead actually must use the degrading term--the slave name--of CFS, in order to not be on the side of the evil oppressors?

Good luck, WillowJ. I've tried that argument to no avail, but you're better with the references, so maybe you'll have more success.

Now that I see Ramsey suggested that any of a number of infections could cause ME, I'm again confused about why CCC-defined ME is not considered "real ME" by these folks. And here I thought I'd finally figured it out. Sigh.......

 

[WillowJ]

Good luck, WillowJ. I've tried that argument to no avail, but you're better with the references, so maybe you'll have more success.

Now that I see Ramsey suggested that any of a number of infections could cause ME, I'm again confused about why CCC-defined ME is not considered "real ME" by these folks. And here I thought I'd finally figured it out. Sigh.......

Thanks, SOC.

your post #39 was good.

I couldn't figure out what PER stands for, though.

I hope it works because I really think we're on the side of reason and science. There's definitely some support for dividing ME up into subgroups (or different diseases, but the difference between the diseases vs. subgroups is really semantics), but to say it's ME on the one hand and CFS on the other is over the top, IMO. The set of people defined by PEM, cognitive/neurological dysfunction, low NK cell function, and oxidative stress, have clearly-related conditions in any case.

Even Dr. Hyde, although he has other preferences himself, won't speak against the Canadian criteria because, as he says, the scientists who developed that document are leaders in the field and have the most experience.

 

[WillowJ]

oh, I figured it out: post-exertional relapse (more accurate than "malaise")

 

[Tulip]

All people with ME/CFS have CNS dysfunction, yes. That's not necessarily the same as MRI lesions or constant SPECT-viewable damage. There could be a test for it which hasn't been well-utilized yet.

No willow, not all people with CFS have CNS dysfunction. Yes there are people diagnosed with CFS who actually have M.E., but then there are people with "CFS" who have short lived post viral syndrome, idiopathic fatigue, poor lifestyles, over training syndrome, depression etc etc. These people do not have CNS dysfunction and should not be told they do.

It isn't hard for an M.E. specialist and even a patient to work out that they have true M.E. rather than post viral syndrome or something else, M.E. is a unique entity with unique symptoms and seriously messes with your brain. I don't know why you keep going on about how it is not fair that people with M.E./CFS who haven't had spect scans are being excluded, it is completely ridiculous and not true. Before 1988 specialists and doctors managed to diagnose true M.E. without those specialised tests and they still can today. It's simply common sense!. And who on earth ever said the Jodi Bassett is an expert on this??? She has even said she isn't, she is a patient expressing her views.

Seriously this isn't kindergarten, if people don't actually fit the criteria for M.E. or the CCC CFS, then they need to be mature enough to accept that and not sulk. This is exactly what has caused us to stay in the same place we have since 1988 and has caused muddled research findings.

 

[WillowJ]

No willow, not all people with CFS have CNS dysfunction. Yes there are people diagnosed with CFS who actually have M.E., but then there are people with "CFS" who have short lived post viral syndrome, idiopathic fatigue, poor lifestyles, over training syndrome, depression etc etc. These people do not have CNS dysfunction and should not be told they do.

It isn't hard for an M.E. specialist and even a patient to work out that they have true M.E. rather than post viral syndrome or something else, M.E. is a unique entity with unique symptoms and seriously messes with your brain. I don't know why you keep going on about how it is not fair that people with M.E./CFS who haven't had spect scans are being excluded, it is completely ridiculous and not true. Before 1988 specialists and doctors managed to diagnose true M.E. without those specialised tests and they still can today. It's simply common sense!. And who on earth ever said the Jodi Bassett is an expert on this??? She has even said she isn't, she is a patient expressing her views.

Seriously this isn't kindergarten, if people don't actually fit the criteria for M.E. or the CCC CFS, then they need to be mature enough to accept that and not sulk. This is exactly what has caused us to stay in the same place we have since 1988 and has caused muddled research findings.

well, I just got through defining CFS, for the purposes of this thread, as CCC CFS, or Fukuda-CFS-with-PEM, which is basically the same (however, hfme rejects CCC as valid--did you miss that earlier on the thread?)

I am not talking about Oxford-"CFS" or people who have completely different conditions such as "short lived post viral syndrome, idiopathic fatigue, poor lifestyles, over training syndrome, depression etc etc.". I have stated numerous times that including these people is crazy nonsense misdiagnosis. we all agree on that--that is not the issue at hand on this thread, and bringing it up now is a red herring.

@ your red herring: not all people with the label CFS have CNS dysfunction, but all people who actually have ME/CFS do.

not all of these people, however, who actually have ME/CFS, meet the specific hfme-approved particular ways of measuring CNS damage and have enterovirus as the infection (again required by hfme).

on the diagnostics thread, there are some people arguing that you have to have a positive SPECT in order to properly have ME. The hfme contention is that you have to have an abnormal SPECT or an abnormal MRI (or maybe an abnormal neuropsych evaluation, but that one is iffy) in order to properly have ME.

(I never once mentioned Jodi, BTW; hfme cites Dr. Hyde as the expert... while it's possible she may misinterpret him sometimes, I know she's a patient and not setting herself up as an expert)

please try to understand what I'm talking about!

 

[SOC]

No willow, not all people with CFS have CNS dysfunction. Yes there are people diagnosed with CFS who actually have M.E., but then there are people with "CFS" who have short lived post viral syndrome, idiopathic fatigue, poor lifestyles, over training syndrome, depression etc etc. These people do not have CNS dysfunction and should not be told they do.

It isn't hard for an M.E. specialist and even a patient to work out that they have true M.E. rather than post viral syndrome or something else, M.E. is a unique entity with unique symptoms and seriously messes with your brain. I don't know why you keep going on about how it is not fair that people with M.E./CFS who haven't had spect scans are being excluded, it is completely ridiculous and not true. Before 1988 specialists and doctors managed to diagnose true M.E. without those specialised tests and they still can today. It's simply common sense!. And who on earth ever said the Jodi Bassett is an expert on this??? She has even said she isn't, she is a patient expressing her views.

Seriously this isn't kindergarten, if people don't actually fit the criteria for M.E. or the CCC CFS, then they need to be mature enough to accept that and not sulk. This is exactly what has caused us to stay in the same place we have since 1988 and has caused muddled research findings.

Did you read what WillowJ and I wrote before you answered, Tulip? CCC-defined ME/CFS and the ME you are claiming appear to be the same thing. In what way are they not?

Where did Jodi Basset come into this?

 

[floydguy]

Seriously this isn't kindergarten, if people don't actually fit the criteria for M.E. or the CCC CFS, then they need to be mature enough to accept that and not sulk. This is exactly what has caused us to stay in the same place we have since 1988 and has caused muddled research findings.

Even I thought this was a bit harsh and I am accustomed to hard core politics boards. No, the problem isn't so much getting diagnosed with X, it's the way research cohorts are defined. I've posted many times on how there must be objective measures for research but I don't think it's necessary at this point to change the clinical definition. Don't blame other patients for this debacle! They could have a CFS label with something treatable!!

 

[WillowJ]

substantial edits made to my post #47

 

[Tulip]

correct, this isn't kindergarten and I just got through defining CFS, for the purposes of this thread, as CCC CFS, or Fukuda-CFS-with-PEM, which is basically the same (however, hfme rejects CCC as valid--did you miss that earlier on the thread?)

I am not talking about Oxford-"CFS" or people who have completely different conditions such as "short lived post viral syndrome, idiopathic fatigue, poor lifestyles, over training syndrome, depression etc etc.". I have stated numerous times that including these people is crazy nonsense misdiagnosis. we all agree on that--that is not the issue at hand on this thread, and bringing it up now is a red herring.

@ your red herring: not all people with the label CFS have CNS dysfunction, but all people who actually have ME/CFS do.

people don't have SPECT scans because they don't get proper medical care. sure, they're available, but that doesn't mean we can order them ourselves or talk our ignorant doctors and spendthrift insurance companies (including medicare) into ordering and paying for them.

(I never once mentioned Jodi, BTW)

please try to understand what I'm talking about!

You mentioned HFME - which is Jodi - it is HER personal opinion that the CCC is not real M.E., not the consensus of the M.E./CFS community. "But" the problem is CCC also covers post viral syndrome and that is what people are annoyed at. That's when we hear of the miracle recoveries, which were always going to happen.. The CCC should have included more of the common M.E. symptoms and that would have eliminated PVS.

 

[WillowJ]

You mentioned HFME - which is Jodi - it is HER personal opinion that the CCC is not real M.E., not the consensious of the M.E./CFS community. "But" the problem is CCC also covers post viral syndrome and that is what people are annoyed at. That's when we hear of the miracle recoveries, which were always going to happen.. The CCC should have included more of the common M.E. symptoms and that would have eliminated PVS.

now we are getting somewhere. I would love to eliminate the non-permanent post-viral diseases. (they make 10% or less, though, which is not real significant and while it does cause some anecdotal problems, those would continue to exist with "chronic fatigue" which is regularly confused with ME anyway and there is no way to undo the malicious history.... so really it isn't a super serious problem of the part we could fix today... but all the same it would be nice to exclude the self-resolving conditions from research)

also, as before, I recognize that Jodi is a well-meaning patient.

thanks for the admission that "CCC is not ME" is not a representative position, and comes from a patient. I think that's an important point to make, especially to persons who have questions about the meaning of all this, like TheMoonIsBlue.

what specific symptoms, please?

 

[SOC]

You mentioned HFME - which is Jodi - it is HER personal opinion that the CCC is not real M.E., not the consensious of the M.E./CFS community.

That was me, not WillowJ.

I have been told more than once that CCC is not ME. None of them have bothered to explain why or how CCC is not ME, so I'm still confused about what their point is, exactly.

"But" the problem is CCC also covers post viral syndrome and that is what people are annoyed at. That's when we hear of the miracle recoveries, which were always going to happen.. The CCC should have included more of the common M.E. symptoms and that would have eliminated PVS.

And how do you define PVS so that it is not included in ME/CFS? What symptoms, specifically, would have eliminated PVS?

 

[insearchof]

Hi SOC

To be clear, the distinction between ME CFS and PVFS is not, as far as I know HFME - it is my own - based on my own reading and research.

MESA: (my bolding below)


The defining characteristic of M.E. is that patients relapse with physical exertion and develop disease progression and severe physical dysfunctionality with continued physical exertion. Hence, the defining characteristic is exercise intolerance, post-exertional muscle weakness, generalized weakness, faintness, and pain; and post-exertional relapsing of symptoms

I am afraid that if that is in fact the MESA position - that they have highlighted that as the defining feature of ME, then it is unfortunately wrong.

It is not consistent with the literature.

I would suggest that the MESA have made it their defining feature, but for medical classification and diagnostic purposes this is not the defining feature of ME. It is only a part of the illness. I suggest the reason they have erroneously elevated this to the defining feature of ME, is to incorporate persons who might have an ME or PVFS like illness without clear evidence of CNS dysfunction ie think CCC.

 

[insearchof]

Hi Willow

Because a number of physicians have said so. For example:
"Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality." - Dr. Byron Hyde

Thank you Willow. I am well aware of that, but unfortunately that is not the evidence I am looking for. That is why I subsequently posted this:

*did Cheney and or Peterson put their views in writing and lodge them with the CDC or to any other offical government body, prior to the formulation of the CFS definition - challenging the CDCs mono like illness theory?

* If yes -did Cheney and or Peterson state that in their view, this was an outbreak of ME?

As I cannot recall such. What I seem to recall was that they did not think it was a mono like illness, (obvioulsy you dont get sudden onset with mono, lesions and CNS dysfunction) but, I dont think they knew what it was.

I cannot recall them ever suggesting (prior to or at the time of the formulation of the CFS definition) that what they were dealing with was ME. But they could very well have and I have just simply missed this important piece of information.

Does anyone know?

 

[WillowJ]

CFS really describes what the CDC "thought" was at the time an outbreak of mono/glandular fever, because they were a bit thick and didn't listen to the doctors on the ground at the incline village outbreak (cheney), who were saying no to that theory and the CDC ignored MRI scans of those patients that showed AIDS like lesions. The outbreak was in fact M.E.. CFS in fact describes post viral syndrome, which is why it resolves itself. It should not be confused with M.E and people should not call CFS, M.E.!.

that's true! but many people who actually have ME, are diagnosed with CFS. There has not even been an ICD code for diagnosing ME in the USA for a number of years--you cannot legally be diagnosed with ME here, it just has not been possible (as we are adopting ICD-10-CM it will again be theoretically possible, but doctors still won't know how to do it).

again, the bad case descriptions are bad case descriptions. we have other case descriptions and codes for mono and chronic mono and all the other things that get mis-classified as ME/CFS.

the thing the CDC was supposed to be investigating, the thing NIH is supposed to be funding, under the name of CFS, is ME. The thing that we have (we who have PEM/PER, neurological dysfunction, low NK cell function, abnormally high and strong oxidative stress) is ME, even though it's falsely called CFS. (there are other people misdiagnosed with CFS but, again, that's beside the point of this particular discussion)

but a bad case definition, does not a new disease make. there is no such thing as a-disease-or-syndrome-of-CFS-that-isn't-ME. (remember, the misdiagnoses are not a syndrome, because a syndrome collects people who have one unique profile--a hodgepodge based on one or a few vague symptoms is not a syndrome).

the only possible way you & ISO can argue there are some that don't have ME, is to restrict ME to enterovirus only, but you still can't stick the others with a CFS label. they don't have mono which will eventually resolve by itself or, low vitamin D, or any other not-related-to-ME disease. it would be ME-like disease from some other infection, not CFS.

 

[WillowJ]

Hi SOC

To be clear, the distinction between ME CFS and PVFS is not, as far as I know HFME - it is my own - based on my own reading and research.




I am afraid that if that is in fact the MESA position - that they have highlighted that as the defining feature of ME, then it is unfortunately wrong.

It is not consistent with the literature.

I would suggest that the MESA have made it their defining feature, but for medical classification and diagnostic purposes this is not the defining feature of ME. It is only a part of the illness. I suggest the reason they have erroneously elevated this to the defining feature of ME, is to incorporate persons who might have an ME or PVFS like illness without clear evidence of CNS dysfunction ie think CCC.

In what way is it inconsistent? what literature? Please provide citations and quotations. Thanks.

 

[insearchof]

Willow quoted:

Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME or mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.

Of course, this is one of the elements required for a diagnosis. Not in issue. It is not however, the key distinguishing crtierion of ME, but it is an important diagnostic element. However to elevate it as the key diagnostic criteria denotes a failure to appreciate the contextual setting within which ME lies in general medicine.

 

[insearchof]

In what way is it inconsistent? what literature? Please provide citations and quotations. Thanks.

I am not here to educate you Willow, but I do suggest you read more widely. Why not start by buying Hydes text with over 750 pages on the subject matter? I dont know that I really want to go through that and my own private papers and compile an article on how that is so. I might consider doing such in my own time and submitting to HFME though.

Anyhow, I'm still on page 4 of this thread - attempting to answer matters sequentially. I will see how I am faring when I get back to this point and energy depending, I might provide a brief summary.

But perhaps you could address my post #55, which I note you have skipped twice now?

 

[WillowJ]

Hi Willow

"Because a number of physicians have said so. For example:
"Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality." - Dr. Byron Hyde"

Thank you Willow. I am well aware of that, but unfortunately that is not the evidence I am looking for.

Do you have a specific reason for rejecting Hyde and other experts' opinions (by Hyde's report) that these people had ME?

That is why I subsequently posted this:

"*did Cheney and or Peterson put their views in writing and lodge them with the CDC or to any other offical government body, prior to the formulation of the CFS definition - challenging the CDCs mono like illness theory?

* If yes -did Cheney and or Peterson state that in their view, this was an outbreak of ME?

As I cannot recall such. What I seem to recall was that they did not think it was a mono like illness, (obvioulsy you dont get sudden onset with mono, lesions and CNS dysfunction) but, I dont think they knew what it was.

I cannot recall them ever suggesting (prior to or at the time of the formulation of the CFS definition) that what they were dealing with was ME. But they could very well have and I have just simply missed this important piece of information.

Does anyone know? "

As far as I know, Cheney and Peterson did not know what it was or what the infectious agent was (that's why the called the CDC, to identify the infectious agent) but they never believed it to be mono/EBV.

I have no knowledge of what communications they may have had with CDC, and I do not have a copy of Osler's Web to see whether this information might be published there. That would be the main means I might have, of having information directed to some other person besides myself.

What I do know, is that I have generally read that physicians familiar with ME and ME/CFS, including some whom Dr. Hyde considers to be experts on ME, generally consider that the outbreaks leading to the name of CFS and the prior ones considered epidemic neuromyasthenia, were most likely, or were indeed, outbreaks of myalgic encephalomyelitis. I have given you one example and you rejected that without explanation.

You now seem to indicate the thing that will satisfy you, is if Cheney and Peterson, had, at the time of the Incline Village outbreak, a knowledge of ME that they probably did not then have, and on the basis of information they probably did not then know, wrote to the government asking them to acknowledge that the outbreak was ME. This is an impossible criteria.

Maybe you would like me to mention that, by 1992, they were describing MRI abnormalities and low NK cell function in their patients (actually NK cell function came in 1987)? http://www.ncbi.nlm.nih.gov/pubmed/1309285