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

[Tulip]

I just want to say that this was never a thread about who is the sickest, I have no doubt that we are all quite sick. It was always a thread about the differences in historical M.E. and the 1988 invented CFS - I want the public to know they are not the same. I hope we can continue to discuss it as it's vital for research funding and our health, sanity and getting our lives back!.

 

[Boule de feu]

I just want to say that this was never a thread about who is the sickest, I have no doubt that we are all quite sick. It was always a thread about the differences in historical M.E. and the 1988 invented CFS - I want the public to know they are not the same. I hope we can continue to discuss it as it's vital for research funding and our health, sanity and getting our lives back!.

You all know that I would win the contest: I am the sickest of all! LOL
A very good thread, Tuliip. Thank you for this.

 

[SOC]

I said the CCC does not fully define M.E., because it does not and that is a fact. It is also a fact that the symptoms such as numbness are common, and your denial of these facts is both insulting and offensive to those with such symptoms. [

This is a ludicrous statement. I never denied that some patients have those symptoms. In fact, I carefully said that I believe that some people do.

You listed these symptoms:

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

I said:

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.

and

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.

You lied about what I said and then claimed the my denial is insulting and offensive. I NEVER SAID THOSE SYMPTOMS DON'T EXIST. You owe me an apology.

The M.E. groups are the ones that have always been around and way before the CCC came in. If you are fairly new to the M.E./CFS scene, I could understand your ignorance some what, if you are not then there is simply no excuse.

Are you saying that any PWC who doesn't believe that slurred speech, numbness, paralysis, seizures, and gastroparesis are common symptoms of ME/CFS is inexcusably ignorant?

 

[Tulip]

Yes Sickofcfs, it was all an *evil* plan to bring you down :victory:

Can we move on please, I don't have the energy for unnecessary arguments and it would be good to keep the thread *on track*.

 

[insearchof]

Hi Mark

I hope that everyone has now taken the opportunity to re-read and research some of the very interesting and complex information on this thread, and to better understand each other's concerns. We are all sick, and it's very important that we don't start harming each other further while we work through these complex issues. It seems to me that there is a great need for us all to understand each other better, and we will hopefully work towards that on this thread.

I agree with these comments Mark.

If I could make a suggestion.....perhaps there could be some mutually agreed upon ground rules for discussion on Historic ME so that the topic can be explored without too much disruption and upset.

Some general comments

There was an observation made, that there are those in this thread who are not assisting the communication process by stating a position and not demonstrating it to the satisfaction of their critics.

I and I think others here that share my pov, do the best we can within the envelopes of limited health to explain our understanding and pov on the differences between ME and CFS and when and where we can, we do refer to reference material. Sometimes though, you can become side tracked from doing do, or run out of time and or energy or both because you are also trying to address other issues raised in a post. There is also the added problem of time differences. So whilst we are sleeping, you are all posting madly and when we arrive to post references or elaborate on a point, we can be met with a lot more to address.

So I think those matters need to be acknowledged.

It is not simply a matter of our unwillingness to explain statements made or an inability to do so. I think our ability to do so has been demonstrated as you seem to acknowledge in your subsequent remarks.

I believe all those on this thread with information on historical ME are very keen to share their knowledge and understanding and reference materials. however, asidefrom the aforementioned, some of the things that make this hard for me are:

*unfair allegations that by simply expressing a pov that is divergent from the main stream pov and wishing to promote such, that I am creating division.

This is not, and has never been my intent. In fact, it has been quite the opposite. The more people who know what ME is the more people with a misdiagnosis of CFS, might be able to get a proper ME diagnosis, where applicable.

*following on from the last point, remarks suggesting that the discussion or my pov on historic ME is promoting exclusivity which it is not and is contrary to the intentions of those in this thread on historic ME as far as I can see

*simply from acknowledging and promoting historic scientific material on this matter, that I am directly ( which I have never done) or indirectly ( which has never been my intent) implying that those who do not have ME, an ME diagnosis or do not fit within the criteria are, to use a phrase attributed to the wessley school, "the underserving sick." Even those with ICF are Ill and are deserving of the same degree of medical care, attention, consideration and compassion as the next person.

I have said, on more than one occasion that those who have had an ME diagnosis prior to 1988, might be offended by the idea that their illness is being referred to as CFS but not because they believe they are sicker than those who might have a CFS diagnosis. Many of these people understand that there will be many people with a misdiagnosis of CFS who have ME and or may have a misdiagnosed potentially terminal illness...so they don't see them as any less sick. No, the reason I suggest that they might be offended, is simply because the idea of being arbitrarily reassigned to a completely different illness classification represents a failure to be acknowledged, heard and , as well as a failure to acknowledge that they are suffering from a distinct problem in need of specific treatment, care and research.

*Demands that I cite reference materials.

The reason I am here, is to learn and share. I am not here to teach. I don't respond well to demands, but I have no problem with polite requests.

It has been said that those with knowledge on Historic ME must prove their assertions. Frankly, I personally do not believe we need to do so, as the literature spanning over fifty years speaks for itself and a good deal of it is now accessible online and has been for a few years now. Further, people here and on other threads, have been referred to sites and other sources where they can reference this material for themselves. HFME is an example and has a lot of valuable material on historic ME and the distinctions being discussed in this thread. for what its worth,I have spoken to those in prominent medical positions here in Australia who recognize that site, as the go to source for information on ME. Had information of this nature not been readily available or readily accessible online, I would agree that the onus on those of us sharing this information would be higher. But, the sources have been mentioned and are freely and readily accessible to others. I do not believe I am responsible or in fact in a position to teach others or provide them with an education on this matter any more than I believe others here have an onus to teach me and explain matters that I do not have knowledge on or understand.If they take the time to do so then I see myself as fortunate and grateful.

Despite referral to such sources and such articles, I sometimes wonder if some individuals are truly interested in learning, and engaging in discussion of materials or whether they are more interested in debate.

I think the point needs to be made that there is a difference between debate and discussion. The former tends to take on a more adversarial flavor with greater risk for the discussion to degenerate.

Whether this is correct or not, Ithink there are several factors that can create this sort of environment which is not conducive to discussion, so maybe this requires a little thought by all participating.


*We all hold general expectations of other and rightly or wrongly, my expectation of others on this subject matter is that they would do what I did a few years ago, which was to listen to the messenger, and not shoot him. I saw it as more productive to go off and research the matter for myself and found it questionable, and unhelpful to both parties, to engage on the subject matter (for reasons apparent in this very thread) until I was in a position that I could discuss it with a reasonable degree of substance, clarity and without getting quite upset. I am not saying that people should desist from discussing the subject unless they have such knowledge, I do think however, if they cannot refrain from shooting the messenger or not see the information as a personal attack, then maybe they should give some consideration to the idea.

Finally, many of these matters resort in frustration and I think sometimes, frustration can be mistaken for arrogance when it is not.

Anyhow, I too hope that this thread can remain a respectful discussion and exploration on historical ME, because not only does history repeat itself for those unfamiliar with it but irrespective of your pov, there is s lot of valuable information there, that can assist anyone in exploring better health, medical research or general politics associated with CFS.

 

[SOC]

Really, with statements like this one SOC, it might be better to read more about historic ME than tell other knowledgeable folk about the size of the task ahead of them.

Okay, since you seem to think you are so much more knowledgeable about ME/CFS than ignorant old me, would you please answer these simple questions which have not been answered in this thread?

I am not requesting an extensive discourse -- I wouldn't want to presume on your time. I will be perfectly happy with one word answers. Yes or no would suffice in most cases. I beg your indulgence in providing a few more words to correct question (5) as necessary.

I have no intention whatsoever of questioning your answers -- I will take you strictly at your word. This is simply for my edification and that of other ignoramuses like me who may be reading this thread. Let me emphasize: I will not question, or even respond to your answers to these questions. I am simply trying to understand.

WillowJ said:

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.

(1) Do you restrict the term ME for those with enterovirus infections? In other words, is an enteroviral infection the only illness for which "ME" can be correctly used, according to your extensive knowledge?

(2) What is the "proper" name for an illness that meets the CCC, including CNS dysfunctions, does not resolve by itself, but is not the result of an enteroviral infection? In other words, what is the "proper" name of the illness defined by the CCC if we exclude the "historic" ME patients?

(3) Did Ramsay say specifically that enteroviral infection is necessary for ME?

(4) Do you think that the illness studied by Lombardi, et al, and Alter/Lo was exclusively "historic" or "real" ME?

(5) Is the following a correct breakdown of currently defined ME/CFS patients according to your extensive knowledge of the situation?

a. ME -- infection with an enterovirus which leads to an illness similar to CCC-defined ME/CFS but commonly includes symptoms like slurred speech, paralysis, and seizures.

b. PVS -- a syndrome resulting from infection with a viral agent that results in prolonged illness state that eventually resolves by itself. This would be the illness defined by the CCC excepting those patients with "historic" or "real" ME, who might be improperly included because of the lack of specificity in the CCC.

c. CFS -- a syndrome defined by the CDC whose definition is so broad that it includes some "historic" or "real" ME patients, PVS patients, patients with primary mental illness, people with the symptom "chronic fatigue", and people with known illnesses that have not been properly diagnosed.

I reiterate in order to make it clear that I do not want to be overly demanding:

Please do not waste your valuable time and energy to try to educate ignorant me. As you've pointed out a number of times, that is not your responsibility. I am not asking for a lecture; I humbly ask for simple clarification of a few points to straighten out some confusion in my incredibly ignorant and brain fogged mind. I will be quite happy if you would deign to expend a single word -- yes or no would do in most cases -- to help me understand the questions I posed in (1) through (4).

For question (5), I plead for, but do not insist upon, a small amount more of your valuable time and energy. If you feel you can spare the time to advise a fellow sufferer (I don't claim to be a fellow ME-suffer, since I still don't understand the details of the distinctions and I don't dare claim "ME", but I do suffer, and I do meet the CCC), would you correct the breakdowns in question (5). In particular, I don't understand where people who fit the CCC, but are not have "historic" ME fit into a "correct", "real", or "historical" framework. Please do not overextend yourself to do it, of course. Perhaps you could spare half a dozen words to elucidate, for the ignorant masses, this important subject.

Thank you in advance for sharing a modicum of your vast and hard-won knowledge with those of us who do read the literature but who, through a sad lack of intelligence despite advanced degrees, and/or advanced brain fog, do not understand it the way you do and so remain inexcusably ignorant.

 

[insearchof]

Hi Mark

There is a great deal of information on this thread, regarding what's been called 'historical ME', which is new to me, and although I think we should always be looking forward positively rather than dwelling on past disagreements, at the same time "those who don't know their history are condemned to repeat it". This history really ought to be well discussed and documented on Phoenix Rising if we are to include the term "ME" in our name, so I'm looking forward positively to learning more about the ...

I am encouraged by this statement Mark and believe that it would serve the position of the board members of PR well, to discuss and document historical ME and understand the distinctions, especially if they wish their views on name changes and or definitions to be taken seriously by institutions in the USA like the CDC and NIH who are well aware of these matters.

Perhaps the board of PR would like to give some consideration to designating a part of the forum to historical ME. This could be a repository for historical reference material, articles and continuing discussions on the subject matter.

I think your analogy of the Russian nestling dolls, is quite apt, and it does also tie in with your point on the need to be mindful of history.

Whilst it might be contended that the doll labelled ME can be found inside the doll labelled CFS, if it is merely viewed as analogous with CFS and is merged with it, not only will the doll labelled ME vanish, but it will amount to a repeat of history, when the doll once found nestled in ME was destroyed. It no longer exists, and the condition it represents is now said to have vanished also ( though this is not correct) The condition is said to no longer exist because it became merged into the doll labelled ME. That doll was once known and labelled as "polio" ( non paralytic polio). This resulted in and contributed to, the loss of general knowledge on, the role of and interest in general Enteroviral infection.

 

[insearchof]

Hi SOC

I refer to Marks post (#100) and my post (#107). I would ask you to reconsider them. I took Marks comments seriously and made my post in response to try and assist in finding some way of navigating through this thread.

I wish to go forward in that spirit. I don't wish to debate or fight you SOC.

Given that, if you would like to reformulate your last post and re post the questions, without the mocking, patronizing and sarcastic tones, I will do my best to answer them.

 

[SOC]

Hi SOC

I refer to Marks post (#100) and my post (#107). I would ask you to reconsider them. I took Marks comments seriously and made my post in response to try and assist in finding some way of navigating through this thread.

I wish to go forward in that spirit. I don't wish to debate or fight you SOC.

Given that, if you would like to reformulate your last post and re post the questions, without the mocking, patronizing and sarcastic tones, I will do my best to answer them.

You are a fine one to be talking about patronizing.

I did read and consider those posts. I don't appreciate your patronizing tone or your implication that I did not consider them sufficiently. In fact, I'm fed up with your implications and outright statements throughout this thread that I haven't read or considered this or that. You don't know what I have read or what I think or how deeply I think. What gives you the right to claim I didn't read or understand or "consider" something because I don't interpret it the way you do?

I don't want to fight you, either. I do, however, stand up for myself when I'm being bullied.

I entered this thread sincerely trying to understand your position because I honestly want to know how "historic ME" is defined. I was not interested in debate because I don't have a position, yet. I just wanted information. I got insults.

For future reference, I am not ignorant, despite what you and Tulip have said in this thread. I have read the literature, but I don't understand it the way you do. That doesn't mean I believe either of us is perfectly right or perfectly wrong.

As for my questions: I don't like demands any more than you do. I am certainly not going to reformulate my questions simply to meet your arrogant and patronizing demand. If I have to grovel to get answers, I'll do without.

I was ready, at one time, to be a supporter of your position. I don't believe that anyone should hijack the name of an established illness simply because they like it better than the one they were given. All I wanted to know what how exactly ME is defined -- in a way any of us could take to our doctors to get a proper diagnosis -- so that it is clear which of us currently under the ME/CFS umbrella have "correctly" defined ME.

Frankly, I no longer care. I can't support your position because I don't understand it. I do not see it is the unquestionable truth that you have unilaterally stated it is. But who really cares if I support your position? I certainly don't.

I will continue to use ME/CFS per the CCC because I respect the expertise of the many people who put in the time and effort to construct that document. Their criteria are clear and can be used by any doctor to diagnosis ME/CFS. That's good enough for me given the current state of knowledge.

I am no longer interested in posting to this thread, so in that way you have won. You haven't made your point, but you have made it no longer worth my time and energy to try to understand where you're coming from. Hopefully, this conversation can continue civilly if I'm not asking inconvenient, but legitimate questions.

 

[insearchof]

SOC



My last post was not patronizing, only forthright.

I took Marks comments seriously and saw your subsequent post to me right after that, as one that was disrespectful and seemed to be in complete disregard for what was being asked of us all.

I am sorry you see things things the way you have expressed in your last post and feel the way you do.

 

[Bob]

For anyone who is interested, here is the Nightingale Definition of 'ME' written by Byron Hyde:
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

Without studying the two definitions very closely, I can't work out the difference between this and the CCC.

 

[insearchof]

For anyone who is interested, here is the Nightingale Definition of 'ME' written by Byron Hyde:
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

Without studying the two definitions very closely, I can't work out the difference between this and the CCC.

Hi Bob,

I have to say, its been a while since I have studied both side by side.

I am not quite sure the point your trying to make here. Correct if I am wrong, but I take it that you are saying that both appear so similar to you, that you wonder what the real issue is?

In any event, I believe there are similarities between the two, and consequently people might have trouble discerning the points of diffference without studying both closely.

However, with things that appear similar (but are not the same) this is often the case. Unfortunately, when this is so, we really have little choice other than to study things closely in order to apperciate and discern the point(s) of distinction.

The Nightingale document you refer to is not a new definition but a codification (summary of historical ME if you like). Given that it is nothing more than a direct nod to and promotion of the historical ME literature and if you have had the opportunity to read and think about the historic literature, you know immediately that there are obvious points of distinction.

The most obvious one being, that all CFS historical definitions and literature leading up to and including CCC denote unremitting fatigue as the main or key characteristic of the illness known as CFS and that the cause(s) is unknown. On the other hand, historical medical literature relating to ME as summarized or collated in the Nightingale document, acknowledges that the main feature distinguishing feature of ME is not unremitting fatigue, but injury to and subsequent central nervous system dysfunction that has largely been associated/attributed to enteroviral infection.

You dont really have to study both documents closely, if you understand what the two documents are and purport to achieve. The Nightingale document is really a summary of historic ME and has nothing to do with CFS.

The CCC is also a codificaiton but primarily in relation to the literature and studies that were done on CFS - to assist physicans in clinical practice to assist with diagnosis of CFS. Some of the CFS research, especially in the early days -did include patients from the Lake Tahoe co hort who Hyde apparently diagnosed as having ME. There was also a tendency - especially on the part of US researchers - in these early days (and perhaps for the reason I gave) to report in the literature, that in the UK, they refer to CFS as ME. With this came a trend to use the terms interchangably in the research community - but they were not using the lake tahoe co hort and they were selecting patients on the basis of early CDC definitions that resulted in a heterogenous group of patients, some that had PVFS, PVF and ICF.

Of course the CCC comes close to selecting ME patients than the earlier CDC definitions, and research done on this basis, may also catch undiagnosed ME patients. This would result (depending on the proportionality of the co hort) as sometimes reflecting results you might have found in the traditional ME literature.

I believe this is why some of the CFS research literature resonates with findings suggestive of ME and that this is consequently why you see some echos of ME in the CCC document which summarised such research findings for the purpose of the exercise they were undertaking in formulating the CCC document.

 

[Bob]

Hi Bob,

I have to say, its been a while since I have studied both side by side.

I am not quite sure the point your trying to make here. Correct if I am wrong, but I take it that you are saying that both appear so similar to you, that you wonder what the real issue is?

In any event, I believe there are similarities between the two, and consequently people might have trouble discerning the points of diffference without studying both closely.

However, with things that appear similar (but are not the same) this is often the case. Unfortunately, when this is so, we really have little choice other than to study things closely in order to apperciate and discern the point(s) of distinction.

Hi insearchof,

Yes, after a quick read of both the CCC and the Nightingale definition, I didn't notice any significant differences. But I haven't compared them closely.

It was a casual remark that I made, but I suppose I said it because I thought it was interesting that the two definitions are so similar, at least on first reading them, and maybe such small differences don't warrant such a heated discussion that has been playing out on this thread. If there are only small differences between the CCC and the historic definitions for ME, then it would be good to know exactly what those small differences are. But I'm afraid that I'm not volunteering to do the work today. Like I said, I was just making a casual observation based on a brief read of each definition, so I may be wrong about there only being small differences.

I agree with your observation that small differences can be very significant in the medical world.

Bob

 

[Bob]

An article on the HFME website:

"What is Myalgic Encephalomyelitis? A historical, medical and political overview"

"This paper provides a historical, medical and political overview of Myalgic Encephalomyelitis."

http://www.hfme.org/whatisme.htm

(I haven't read this article yet, I'm just posting in case anyone finds it helpful.)

I think I've read the early sections before, but I'm pretty sure I haven't read the whole thing...maybe one day...

 

[insearchof]

Hi Bob,

Looks like you posted while I was adding to/editing to my post.

It was a casual remark that I made, but I suppose I said it because I thought it was interesting that the two definitions are so similar, at least on first reading them, and maybe such small differences don't warrant such a heated discussion that has been playing out on this thread

I thought that is what you might have been alluding to. So thanks for clarifying that and I hope that my previous post goes some of the way to suggesting that the differences are not minor and the discussion therefore, not pedantic.

Thanks for posting the above article. I think I have read that a couple of times, but it is always good to revisit these articles.

 

[Bob]

Hi Bob,

Looks like you posted while I was adding to/editing to my post.

Yes, I'll read the rest of your previous post in a mo.

I thought that is what you might have been alluding to. So thanks for clarifying that and I hope that my previous post goes some of the way to suggesting that the differences are not minor and the discussion therefore, not pedantic.

I don't think the discussion has been unnecessarily pedantic, just heated at times. It's been extremely interesting though.

 

[Boule de feu]

So exciting, bu still very confusing.

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.

The symptoms you mentioned above are the ones that are found in very severe cases of ME. Would you agree that Dr. Cheney and Dr. Peterson ME population could have been less severe cases and this is why they haven't included these symptoms in the CCC case definition. Could the CCC be defining the same disease and this is why Dr. Byron respects the authors' opinion?

Would we also agree that when diagnosed with the CCC, we have a better chance of having ME? If we have all of the symptoms stated in the CCC less 3 does it give me the right of saying I suffer from ME?

I find this thread very fascinating but boy OH boy am I depressed when reading it. How will the scientific/medical world be able to cure me if nobody can agree?

We could say that we are experts in this field (we know more than lots and lots of doctors) but even us can't agree!

WHO HAS ME AND WHO HAS NOT???

 

[Bob]

There has been a certain amount of frustration expressed on this thread, but I think that this frustration just comes from not being able to easily communicate our understanding of the subject, and also not fully understanding other people's perspectives.

I believe that most of the heat in discussions on this subject comes purely from misunderstanding, and miscommunicating, each other's points of view.
It's such a complex and sensitive subject, and it's so difficult to explain our knowledge and points of view in a few sentences on this subject, that people easily misunderstand and miscommunicate each other's perspectives and motivations.

After decades of living with the disease, investigating the subject and seeing the history of ME develop and the disease definition being corrupted by vested interests, i think that some people understandably get frustrated when they perceive that others appear to be unable to grasp what they view as their own basic and fundamental understanding and insights of the history of ME and CFS.

Equally, I think that people get frustrated when people appear to be telling them that they don't have ME, and that they only have a non-illness called CFS, unless they've been diagnosed with a historic definition of ME. I know that this isn't what people are saying, but some comments can come across like that and can appear to be arrogant if not communicated sensitively.

In reality, the subject is extremely complex, and it's very helpful to have a thread like this one so that we can all get better insight into the subject.
At the end of the day, we don't all have to agree with each other, but if we understand each other's perspectives, and we collectively develop a better knowledge about the history of ME and CFS and ME/CFS, then I believe that this empowers us all to work together for positive change for our community, even if we don't agree on absolutely everything.

 

[Bob]

In the spirit of mutual cooperation, I've taken the liberty of reposting sickofcfs's questions because they are very interesting.
(sickofcfs, if this isn't acceptable, then apologies, and i'll delete this post if you want me to.)

If anyone has strong views about these issues, then I would be very interested in reading the responses...

(1) Do you restrict the term ME for those with enterovirus infections? In other words, is an enteroviral infection the only illness for which "ME" can be correctly used, according to your extensive knowledge?

(2) What is the "proper" name for an illness that meets the CCC, including CNS dysfunctions, does not resolve by itself, but is not the result of an enteroviral infection? In other words, what is the "proper" name of the illness defined by the CCC if we exclude the "historic" ME patients?

(3) Did Ramsay say specifically that enteroviral infection is necessary for ME?

(4) Do you think that the illness studied by Lombardi, et al, and Alter/Lo was exclusively "historic" or "real" ME?

(5) Is the following a correct breakdown of currently defined ME/CFS patients?

a. ME -- infection with an enterovirus which leads to an illness similar to CCC-defined ME/CFS but commonly includes symptoms like slurred speech, paralysis, and seizures.

b. PVS -- a syndrome resulting from infection with a viral agent that results in prolonged illness state that eventually resolves by itself. This would be the illness defined by the CCC excepting those patients with "historic" or "real" ME, who might be improperly included because of the lack of specificity in the CCC.

c. CFS -- a syndrome defined by the CDC whose definition is so broad that it includes some "historic" or "real" ME patients, PVS patients, patients with primary mental illness, people with the symptom "chronic fatigue", and people with known illnesses that have not been properly diagnosed.

 

[Boule de feu]

"So if you had a viral onset with evidence of CNS dysfunction and symptoms that were not quite consistent with ME, you would be diagnosed as having PVFS as classified under ICD 10 G93.3, not CFS."

Thanks, InSearchOf.......that was obviously just a snippet of all the info you were kind enough to post. Once again they still tag "Syndrome" on the end of "Post Viral Fatigue"..........when a syndrome is a collection of unexplained symptoms, and if it is KNOWN that a virus triggered the illness PVF, then why tag "syndrome" on the end? Why not just "Viral Induced (insert world here)" It seems no one can escape the dreaded SYNDROME.

Unfortuantely, I have never heard of anyone being diagnosed with "Post Viral fatigue Syndrome." Or, In the United States, ME for that matter. Is ME even taught in medical schools here? Maybe if a person has abnormal MRI and SPECT scans they will be given an MS or atypical MS diagnosis. Otherwise, it seems you can either chose from: CFS, CFS or CFS. And they say Goodbye, Goodbye, Goodbye to any further probing into the cause of your illness unless you get a great doctor or you can do the research yourself. Getting treatment, is another matter altogether.

I somehow doubt, if all this information is brought to a doctor and a person clearly does have PVFS, they are not going to have their diagnosis changed............it seems once you get tagged with "CFS" you're stuck with it, unless you get diagnosed with something else really serious.

Doctors don't really care how you developed "CFS" even though it is essential, IMHO, to know that information!

P.S. Here is a link to the Dubbo Studies, from an old archive on Phoenix Rising:

http://aboutmecfs.org.violet.arvixe.com/RsRch/Dubbo.aspx

I agree with this.

I live in Canada and in November 2005 i had a case of - what was very obvious at the time - PVFS. I was referred to an infectious specialist for a virus I could not get rid of (after 4 months). However, the specialist mentioned "systemic illness" and my doctor gave me a diagnosis of "a very strong case of ME/CFS".