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

[SOC]

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.

The CCC clearly states that there is CNS dysfunction in ME/CFS.

5. Neurological/Cognitive Manifestations: Two or more of the following difficultiesshouldbe present: confusion,impairmentofconcentrationand shortterm memory consolidation,disorientation, difficulty with information processing, categorizing and word retrieval, andperceptual and sensory disturbances e.g. spatial instability and disorientation and inability tofocus vision. Ataxia, muscle weakness and fasciculations are common. There may be overloadphenomena: cognitive,sensorye.g.photophobiaandhypersensitivitytonoiseand/oremotional
overload,whichmayleadtocrashperiodsand/oranxiety.
6. AtLeastOneSymptom fromTwooftheFollowingCategories:
__a. Autonomic Manifestations: orthostatic intoleranceneurallymediated hypotension(NMH),postural orthostatic tachycardiasyndrome(POTS), delayedpostural hypotension;light-headedness; extremepallor; nauseaandirritablebowelsyndrome; urinaryfrequencyand bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea.
__ b. NeuroendocrineManifestations: loss of thermostatic stability subnormal bodytemperature and marked diurnal fluctuation, sweating episodes, recurrent feelings offeverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change anorexia or abnormal appetite; loss of adaptability and worsening ofsymptomswithstress.
__c. ImmuneManifestations: tender lymph nodes, recurrent sore throat, recurrent flu-likesymptoms, generalmalaise, newsensitivitiestofood, medicationsand/orchemicals

Furthermore, the CCC does not claim that fatigue is the defining characteristic of ME/CFS.

Maybe you're thinking of Fukuda or some other definition?

 

[Tulip]

The CCC is not a full description of M.E. which is why people will say it's not M.E.. You have to remember that M.E. is primarily a neurological disease, PVS is not. PVS is basically fatigue, achyness, sore glands and throat and night sweats.

The common symptoms they left out of the CCC for M.E. were:

Slurred speech
Numbness
Paralysis
Seizures
Gastroparesis
More detailed info on cardiac arrhythmias

There are others, but that is all I can think of at the moment.

Anyway, the point of this thread was for "me" to work out if I should try educate the public on the difference between M.E. and CFS, here in Australia which with the crappy definitions paints CFS as PVS. They don't know about the CCC or any of that other stuff, they just know what the media and bad research has told them. I am going to try to educate them by telling them what M.E./CFS is not and that includes all the post viral, overtraining, depression etc etc etc, things I previously mentioned. That IS what a huge number of the general public and doctors think it is. History can be altered by telling people what M.E. isn't and by dropping the term CFS and going back to calling it post viral syndrome. The CDC has totally messed all of this up and it makes me so angry, but I just can't sit by and let people keep thinking these things, laughing at us and saying "oh i'm tired too", especially when people are dieing.

 

[WillowJ]

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?

post #55 was answered while you composed this... I haven't exactly read the posts in order

you may not be here to educate me, but if you wish to debate, you should support your point. I can understand lack of energy and that excuse I will accept.

 

[insearchof]

Willow:

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

I am sorry if you thought that I was rejecting Hyde's or other experts opinions. I was not doing so. It is relevant but in the absence of the evidence I am looking for - only as an after fact and therefore - in terms of different values assigned to probative values of evidence, not the best quality.

I am looking for evidence which is contemperaneous to events at the time they unfolded. This evidence would have far more probative value than anything else.

As for what will satisfy me Willow, in order to know that - you would need to know why I am seeking this information and sadly, you have no idea.

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

So if I understand you, are you saying in your view - that Cheney and Peterson did not know the outbreak was ME, (didnt know what ME was or how to diagnose it etc) and wrote to the CDC asking them - what this was? And further, they remained ignorant as to the fact that the outbreak was an infectious episode of ME, up until and well after the formulation of the CFS definition? Would that be a fair summation of your view and understanding of the matter?

 

[WillowJ]

The CCC is not a full description of M.E. which is why people will say it's not M.E.. You have to remember that M.E. is primarily a neurological disease, PVS is not. PVS is basically fatigue, achyness, sore glands and throat and night sweats.

The common symptoms they left out of the CCC for M.E. were:

Slurred speech
Numbness
Paralysis
Seizures
Gastroparesis
More detailed info on cardiac arrhythmias

There are others, but that is all I can think of at the moment.

Anyway, the point of this thread was for "me" to work out if I should try educate the public on the difference between the two. They don't know about the CCC or any of that other stuff, they just know what the media and bad research has told them. I am going to try to educate them, by telling them what M.E./CFS is not and that includes all the post viral, overtraining, depression etc etc etc, things I previously mentioned. That IS what a huge number of the general public and doctors think it is. History can be altered by telling people what M.E. isn't and by dropping the term CFS.

for those symptoms, I don't understand; are you saying paralysis is required to have ME? or those are extra optional symptoms? in what way is that list utilized, to exclude post-viral fatigue?

I'm pretty sure CCC actually does list some of those. But I'm too tired to look right now, I'm sorry.

 

[SOC]

The CCC is not a full description of M.E. which is why people will say it's not M.E.. You have to remember that M.E. is primarily a neurological disease, PVS is not. PVS is basically fatigue, achyness, sore glands and throat and night sweats.

The common symptoms they left out of the CCC for M.E. were:

Slurred speech
Numbness
Paralysis
Seizures
Gastroparesis
More detailed info on cardiac arrhythmias

There are others, but that is all I can think of at the moment.

Are you saying they are necessary symptoms to define ME? In other words, if one doesn't have all those symptoms, one doesn't have ME? Where is that defined? Do you have a reference?

Anyway, the point of this thread was for "me" to work out if I should try educate the public on the difference between the two. They don't know about the CCC or any of that other stuff, they just know what the media and bad research has told them. I am going to try to educate them, by telling them what M.E./CFS is not and that includes all the post viral, overtraining, depression etc etc etc, things I previously mentioned. That IS what a huge number of the general public and doctors think it is. History can be altered by telling people what M.E. isn't and by dropping the term CFS.

Well, you can only make the distinctions if you can actually clearly state them. Sure, we all need to ditch the stupid and misinformational "CFS", but if you're trying to explain the difference between a so-called "real ME", and CCC-defined ME/CFS, you're going to have a much bigger job than I think you are trying to handle.

The CCC rules out overtraining, depression, etc, etc, etc. I'm not so sure about the details of PVS, but there seem to be a lot of similarities between PVS and ME, so you'll have to be pretty careful to make that distinction clear.

I said earlier in this thread that I think it's easy enough for anyone to understand the difference between chronic fatigue (the symptom) and ME/CFS by CCC which requires neurological/cognitive, autonomic nervous system, neuroendocrine, and immune abnormalities.

 

[WillowJ]

Willow:



I am sorry if you thought that I was rejecting Hyde's or other experts opinions. I was not doing so. It is relevant but in the absence of the evidence I am looking for - only as an after fact and therefore - in terms of different values assigned to probative values of evidence, not the best quality.

I am looking for evidence which is contemperaneous to events at the time they unfolded. This evidence would have far more probative value than anything else.

Hyde says he and two ME experts were at the meeting that drew up the Holmes definition. The CDC was unwilling to listen to the two ME experts, so they got up and left. Hyde followed them out, which was unfortunate for the sake of the definition but nice for his own education. Sorry I don't have the link handy. But this is contemporaneous. I think that answers the important part your next as well.

except, no, Peterson and Cheney, I believe, had a good idea of the nature of what they were dealing with (infectious neuro-immune condition, but they personally did not know it was ME, as far as I know--at that time, but keep in mind Peterson is keeping up with the same cohort now) but did not know the infectious agent. they asked CDC to find the infectious agent, which CDC was unwilling and unable to do.

must go now, exhuasted, ttyl

 

[WillowJ]

The CCC rules out overtraining, depression, etc, etc, etc. I'm not so sure about the details of PVS, but there seem to be a lot of similarities between PVS and ME, so you'll have to be pretty careful to make that distinction clear.

I said earlier in this thread that I think it's easy enough for anyone to understand the difference between chronic fatigue (the symptom) and ME/CFS by CCC which requires neurological/cognitive, autonomic nervous system, neuroendocrine, and immune abnormalities.

 

[Tulip]

for those symptoms, I don't understand; are you saying paralysis is required to have ME? or those are extra optional symptoms? in what way is that list utilized, to exclude post-viral fatigue?

I'm pretty sure CCC actually does list some of those. But I'm too tired to look right now, I'm sorry.

No i'm not saying they are a requirement to have M.E., but they are common symptoms and should have been included to give diagnosing doctors a good picture of M.E.. It presents problems if those symptoms do come up later down the track and the doctor doesn't understand they are part of M.E. for quite a few people. It's happened to me, even the hospital didn't have a clue.

 

[Tulip]

Well, you can only make the distinctions if you can actually clearly state them. Sure, we all need to ditch the stupid and misinformational "CFS", but if you're trying to explain the difference between a so-called "real ME", and CCC-defined ME/CFS, you're going to have a much bigger job than I think you are trying to handle.

The CCC rules out overtraining, depression, etc, etc, etc. I'm not so sure about the details of PVS, but there seem to be a lot of similarities between PVS and ME, so you'll have to be pretty careful to make that distinction clear.

I said earlier in this thread that I think it's easy enough for anyone to understand the difference between chronic fatigue (the symptom) and ME/CFS by CCC which requires neurological/cognitive, autonomic nervous system, neuroendocrine, and immune abnormalities.

The general public and most doctors don't know about the CCC in AUSTRALIA!!!. Look at the Australian guidelines for diagnosing M.E./CFS, they don't rule out ANY of that stuff. You are not talking about the same thing as I am.

 

[SOC]

No i'm not saying they are a requirement to have M.E., but they are common symptoms and should have been included to give diagnosing doctors a good picture of M.E.. It presents problems if those symptoms do come up later down the track and the doctor doesn't understand they are part of M.E. for quite a few people. It's happened to me, even the hospital didn't have a clue.

A definition never includes all the symptoms that are possible with a given illness. The goal is define criteria which will identify all patients with the illness without including those who do not have the illness. Many people will have additional symptoms beyond those in a definition or criteria document.

I'm sorry to hear your doctors were ignorant of the fact that some of your symptoms are related to ME. It's an unfortunate problem we all have. I'm surprised however, that any doctor wouldn't take slurred speech, numbness, paralysis, seizures, or gastroparesis seriously, regardless of the cause. That sounds like medical negligence to me.

 

[Tulip]

A definition never includes all the symptoms that are possible with a given illness. The goal is define criteria which will identify all patients with the illness without including those who do not have the illness. Many people will have additional symptoms beyond those in a definition or criteria document.

I'm sorry to hear your doctors were ignorant of the fact that some of your symptoms are related to ME. It's an unfortunate problem we all have. I'm surprised however, that any doctor wouldn't take slurred speech, numbness, paralysis, seizures, or gastroparesis seriously, regardless of the cause. That sounds like medical negligence to me.

Oh good grief. Of course you can't put all symptoms in, but you should put common ones in such as the ones I listed, this is what the M.E. community was unhappy about. Those symptoms are classic of M.E..

I did not go to hospital with all those symptoms, only one.

 

[SOC]

The general public and most doctors don't know about the CCC in AUSTRALIA!!!. Look at the Australian guidelines for diagnosing M.E./CFS, they don't rule out ANY of that stuff. You are not talking about the same thing as I am.

Then maybe you should have read the thread before you got snotty with WillowJ in post #46. She was clear that she was talking about CCC ME/CFS. So was I. No one in this thread said they were talking about Australian guidelines for diagnosing ME/CFS.

 

[Tulip]

Then maybe you should have read the thread before you got snotty with WillowJ in post #46. She was clear that she was talking about CCC ME/CFS. So was I. No one in this thread said they were talking about Australian guidelines for diagnosing ME/CFS.

Ummm, I am from Australia and the thread was talking about me writing letters to my local newspapers. It is your mistake, not mine. You have misunderstood the thread.

 

[SOC]

Oh good grief. Of course you can't put all symptoms in, but you should put common ones in such as the ones I listed, this is what the M.E. community was unhappy about. Those symptoms are classic of M.E..

I don't think most CCC-defined ME/CFS patients would agree with you that those symptoms are common. That isn't to say that some patients have some of those symptoms.

I did not go to hospital with all those symptoms, only one.

Thank goodness! Having all those symptoms at once would be horrible.

I stand by my statement:

I'm surprised however, that any doctor wouldn't take slurred speech, numbness, paralysis, seizures, or gastroparesis seriously, regardless of the cause. That sounds like medical negligence to me.

 

[Tulip]

I don't think most CCC-defined ME/CFS patients would agree with you that those symptoms are common. That isn't to say that some patients have some of those symptoms.

They are in true M.E. I have been around the disease long enough to see it myself. It just shows that as M.E. groups know, the CCC is not the holy grail.

Over and out

 

[SOC]

Ummm, I am from Australia and the thread was talking about me writing letters to my local newspapers. It is your mistake, not mine. You have misunderstood the thread.

Nope, not my mistake. You started the thread, you do not control the path the thread takes. The thread included a discussion of the definition of ME.

It was your mistake in making a snotty post in reply to WillowJ (who was not disagreeing with you) without paying attention to what she actually said.

The silliest thing is that I don't think either WillowJ or I was disagreeing with you in any substantial fashion.

 

[SOC]

They are in true M.E. I have been around the disease long enough to see it myself. It just shows that as M.E. groups know, the CCC is not the holy grail.

Over and out

Okay, fair enough. Your position is now clear. You believe there is a "true ME" and it is not the identified by the CCC. That is a belief which you are certainly entitled to have. It's not a fact.

I don't know who these ME groups who "know" are, but I sure wish they'd publish a clear definition so the rest of us could figure out WTH they're talking about.

Until someone comes up with a clear definition that is better than the CCC, I'm sticking with the CCC.

 

[WillowJ]

Ummm, I am from Australia and the thread was talking about me writing letters to my local newspapers. It is your mistake, not mine. You have misunderstood the thread.

well, SOC and I were talking directly to someone else who was talking about the difference between "true"-ME and CCC-CFS (which was evidently a rabbit-trail from the original purpose of your thread), and you answered us... that's where the misunderstanding arose as best as I can tell... it was not SOC's mistake

 

[WillowJ]

TheMoonIsBlue, I know of one person diagnosed with PVFS. She probably has ME, though. However, ME has not been an option in the US because someone wrote it out of the ICD-CM codes. It's back with ICD-10-CM, but like you said, virtually no one will know how to use it.