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

insearchof · May 1, 2011

Hi Bob

I don't think the discussion has been unnecessarily pedantic, just heated at times.

Yes, which has been regretable.

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 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.

I think this is a very good assessment of the situation and I agree with your observations.

Appearances is the key word.

I think it might pay for us all to question from time to time, our own perceptions. Is this really what this person is trying to convey? Ok, I am not sure - so many be it is better to ask or summarise their position and ask for clarification before proceeding?

Regarding SOC questions for the sake of keeping the peace, perhaps if she or you can signify that this is agreeable, then I would be happy to respond to them, as best as I am able and when able to do so.

Boule de feu · May 1, 2011

Tuliip said:
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. Have a look at all those who died of M.E., what were their symptoms?. They were paralysis, numbness, gastroparesis, seizures etc.

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.

There are very aggressive cancer and there are cancer which are not so aggressive.

My dad has diabetes and has no symptoms so far (25 years) My friend has diabetes and must inject herself three times a day. Otherwise, she passes out and can fall into a coma.

Our bodies react differently to the same pathogen. Some are more resistant than other.

I might not die from ME, I might not have paralysis or seizures (only vertigo!) but it does not mean that I don't have the disease.

Boule de feu · May 1, 2011

Boule de feu said:
There are very aggressive cancer and there are cancer which are not so aggressive.

My dad has diabetes and has no symptoms so far (25 years) My friend has diabetes and must inject herself three times a day. Otherwise, she passes out and can fall into a coma.

Our bodies react differently to the same pathogen. Some are more resistant than other.

I might not die from ME, I might not have paralysis or seizures (only vertigo!) but it does not mean that I don't have the disease.

This might sound stupid but I need to ask:
Could a person receive a PVFS diagnosis, and then years later the illness would evolve and become full-blown ME?
I think what I have is the gradual onset type - many symptoms appeared 10+ years ago (IBS, extreme sweating, severe neck pain), then the immune problems started (i caught something and could not get rid of it) and now I am severely sick (with tons of symptoms - it seems that it is attacking all of my organs). My illness is definitely getting worse. I will probably lose my legs. It scares the h... out of me!

WillowJ · May 1, 2011

insearchof said:
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.

this is the only thing I meant by saying ME is the disease under the CFS case definition. Regardless of what CDC thought they were trying to describe, this is what the patients had. This is what they ought to have been describing. The CDC failed to recognize what disease it was and diagnose with existing diagnosis, and made up a new case criteria which failed to define (specify the boundaries of; separate one thing from all others; state particularly) any thing at all. There is no such thing as CFS because it is not something which can be differentiated from anything else.

WillowJ · May 1, 2011

I tried to post this the other day, but my computer crashed and ate my post, and I haven't had the energy to repeat it.

I think my position has been misunderstood, so I will try to briefly repeat the key points of what I've been trying to say. Keep in mind, though, that I'm interested in Ramsay's further work. I just don't have access to his books. Hopefully his works have been published in journals, because more and more of the older journals are being scanned in and publihsed on pubmed with free access.

preface: the commonly-used definitons do not specify any disease or syndrome, and include a lot of people who do not have a similar disease to us. these are not people being considered by me. they have random unrelated conditions and are misdiagnosed if given a label of CFS (they do not have the disease under that label), and will do better and have better access to care if diagnosed with something else.
not considering these random fatigue patients, is acknowledged to be a redirect from original purpose of thread. however, they have not been under serious consideration by anyone since about the twelfth post, (somewhere in there the thread changed from CF vs. ME/CFS to ME vs. ME/CFS) and since, have only been introduced when there has been a misunderstanding about what was being talked about since then.

a) there is considerable scientific support for identifying differences within the ME/CFS group. new work includes Kerr's genomic/infectious subtyping. old work includes Ramsay which rlc cited.

b) there is also considerable support for considering the ME/CFS group to be related. work includes Klimas' work identifying a specific pattern of reduced NK cell function, could also include specific PEM pathologies such as oxidative stress and cardiopulmonary profiles, Light's genomics work, and the spinal fluid study.

Whether the "subgrouping" takes the forms of different disease titles or subgroups seems to be more of a matter of semantics to me than anything else. Lupus, Diabetes, MS, etc. have recognized different forms. This does not prevent the diseases from being scientifically studied. Indeed, Lupus, for example, can be studied with RA and scleroderma, for certain purposes, and this adds to our knowledge.

So the problem is not the disease title. The problem is whether you approach the study in a scientific manner, or a non-scientific manner.

We all know that the problem here is some con men (and women) dressed up in scientists' coats and government officials' hats, who are determined to approach the study of ME/CFS in a non-scientific manner.

As long as that situation persists, it doesn't really matter (as far as fixing the science) whether we call our disease(s) ME, Underwater Basketweaver's Hysteria, or assign twelve serious names to twelve different types.

c) just don't ever tell someone that they or anyone else has CFS, or that CFS is a syndrome. A syndrome is a distinctive set of signs and symptoms which delineates a specific pathology (whether or not it's understood at the time). Raynaud's Syndrome is a good example. There is no such thing as CFS. Nobody has CFS. CFS is a bedtime story for insurers and cash-strapped governments and overworked doctors. Nobody should advocate the use of this title for anyone.

So I still say, let everyone (of us with related diseases) use the title of ME. But that doesn't mean we can't or shouldn't subtype. We can and should. The two are not incompatible.

Mark · May 1, 2011

Tuliip said:
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!.

That's right. In order to communicate that to the public, it seems we have to understand the difference with great clarity ourselves - and it seems to me that there is probably still a lot that we don't know about those differences. I hope we can learn together without getting too fractious again.

Mark · May 1, 2011

Since things seemed to get fractious again quite quickly, I am now reading through this thread since the restart...and I'm afraid it's still going too fast for me to follow the argument. Regrettably, as I'm sure you'll all understand, it would be a difficult committment for me to undertake to read the whole thing from the beginning!

In #105, Sickofcfs took issue with Tulip's comment:

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.

SickofCFS responded:

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.

I have tried to unpick this argument, but without references to the earlier comments in the thread (a reference to the post number would have sufficed) it is hard for me to determine who said what, when, and to whom.

The inflammatory language on both sides is also most unhelpful in determining the facts of the matter.

I have tried to form an impression of what is going on here, and I do think I have the gist of it, but I can't do better than insearchof's excellent post #107, so I'll just reproduce that as being in line with my own impressions so far:

insearchof said:
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, aside from 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, I think 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.

This seems to me an extremely reasonable post - however I found just one comment that appeared to be incomplete or inadequate in a way that seems to me to be pertinent:

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.

This seems to be a statement that the position on historic ME is clear and proven, easily accessible via ME sites on the internet, and should not need to be proven all over again. And that therefore those with the historical knowledge should therefore not have to prove their assertions again. I can quite easily believe that this is true, and that the state of the scientific evidence as it stood in 1988 was somehow torn up, and replaced with a new model. This does not seem to me to be the way that science is supposed to work, and if this assertion were to be true, then it would have some quite deep implications.

However, it seems to me to be problematic if the above statement means to say that "those with knowledge on Historic ME" should be able to make assertions purely based on the fact that they have this knowledge, and that they ought not to need to provide referenced evidence for those assertions. I am afraid that providing an instruction to 'just read the information on hfme' is in practice unlikely to be sufficient for most people.

If the debate is to remain sober and rational, full referenced sources for disputed claims would seem to me to be essential.

That said, exhortations to read the information available from hfme do seem a quite reasonable request to me. If it is indeed the case that these sites provide an archived reference of the state of the scientific consensus as it stood in 1988 before it was overturned and replaced by the psychiatric model of the Wessely school, then it would seem absolutely essential to examine that material rigorously if any progress towards understanding is to be made.

I think that if we are to honestly seek the truth here, then we need to honestly and carefully examine that historical evidence. I am mindful that I have not myself explored those websites myself in depth - partly because they credibly refer to symptoms which I have not experienced myself, which go beyond the CCC definition and are said to be seen as essential to a diagnosis of ME by the leading expert of the scientific era preceding the advent of the Wessely school, Dr Byron Hyde. Such assertions appear both reasonable and credible to me, and when I come to think of it, I don't think I have ever seen an evidenced refutation of these assertions when they have been made.

Based on all of this, I must say that I am inclined to believe that the old-school information remains unrefuted, that there was an unjustified break in the scientific progression in the late 1980s. It seems to me vital to home in on the point in time when this apparent break in the historical and scientific record occurred, and examine the available evidence of what science said before and after this break occurred, in forensic detail. Whatever the truth of the matter, this sudden change of direction in 1988 appears to be essential to the understanding of the truth about ME/CFS.

Mark · May 1, 2011

insearchof said:
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.

You're right to be encouraged: I had indeed already reached the conclusion myself that we need to do as you say, and I thank you for pointing out the importance of this exercise for relations with the CDC NIH. We will, of course, need your help with this exercise...

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.

That is again an excellent proposal, and is again precisely the conclusion I had already reached. We can't have the suffix .me and talk about ME/CFS credibly without doing this.

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.

Thanks, this analogy has been buzzing round my head for a week or two and it seems quite strong to me.

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.

Absolutely, I do see it exactly that way.

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).

I'd got that bit too, with so much evidence pointing at the signfiicance of that point from multiple angles.

One of the most important was a perusal of the sections of the MRC's "S Files" from the period c.1955-1960, the titles of which are available here:
http://www.nationalarchives.gov.uk/...tails.asp?CATID=5955&CATLN=3&FullDetails=True

If one clicks "Browse From Here" on the RHS of that page, and then looks at section FD23, the archive of some 5000+ files can be paged through, and their titles explored. It makes for more than fascinating reading...

There is a crucial task here IMO. Although one may page through the titles, these are not as easily searchable as they might be. The catalogue references are opaque, and a full index of the section does not appear to be easily available, meaning that in order to browse through the archive to get to the most interesting material one must go through pages and pages, one at a time. If these were to be laid out on one page, all together, this would make the entire story of this archive much clearer. Sadly, after I had spent a day or so trawling through from start to finish, my computer and I subsequently crashed and my notes were lost. I really was quite foolish to fail to back up my work here.

This job still needs doing - especially by anyone interested in the celebrated secret files on ME/CFS which are now locked till 2071 or so...for this is the archive which contains those files and it provides some highly relevant context to explore the nature of the rest of the content to be found in that archive...

I believe it is the case that the public have the right to access many of these files and that some of the material has not yet been made publicly available but could be. This would seem to me a fundamentally important task.

This resulted in and contributed to, the loss of general knowledge on, the role of and interest in general Enteroviral infection.

I looked up the link for "enterovirus" on wikipedia for anyone who wants to get started - it seems surprisingly short for such an important topic, just as you say...
http://en.wikipedia.org/wiki/Enterovirus

Mark · May 1, 2011

I'm not sure that reference to "mocking, patronizing and sarcastic tones" was helpful, nor did I myself conclude on a reading of sickofcfs' long list of questions that there was a clear case that they were so, but I did think I sensed a certain undercurrent there still...nevertheless I would be interested in the answers to those questions, though it seems like a fair bit of work...

Sickofcfs, your response here seems angered and frankly it appears as an excessive reaction in response to a short though accusatory post - doubtless there is a long history to this dispute of which I am unaware - but I would have thought that a statement that you had no intention in your post to be "mocking, patronizing and sarcastic" would have sufficed...and at this point we are merely trading insults about being patronizing which, again, is most unhelpful...

Sickofcfs said:
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.

Clearly, we are looking at two different readings of the same literature - or perhaps, two different interpretations on what the appropriate response is to what the literature tells us.

And clearly you are both highly intelligent people who have studied the literature and reached different conclusions.

The debate is fascinating, but always more interesting and fruitful if the heat can be taken out of it, which as I've said before, we will aim to do on this thread by suspending it if things get out of hand again.

My impression really, as I've said, is that if there has been a break in the scientific literature and a "starting again from scratch" which resulted in the CCC, then regardless of how positively we may regard the CCC as the best practical definition we have available for those of us working backwards, those of us with CFS perhaps, who are looking for the best tool available to answer our questions...regardless of that present reality, we can never real understand what is happening politically unless we understand what happened from the perspective of those people working forward, which is presumably those with "true ME".

These are two intelligent and rooted scientific approaches, looking at the same events from different sides. If we wish to hone in on the truth, then these two need to converge...so please let's not give up on that task: I believe there is still room for both sides' truths to converge in a synthesis...

ETA: I do hope you won't give up on the attempt to achieve the objectives you stated in your post quoted above, SickofCfs, they are noble objectives and I do believe they are sincerely held so I would encourage you to hold to them and allow us to moderate the discussion as best we can...I know this is probably a somewhat stressful difference of opinion for you both so, again, we will take regular pauses for reflection as and when necessary...

Tulip · May 1, 2011

Mark said:
Since things seemed to get fractious again quite quickly, I am now reading through this thread since the restart...and I'm afraid it's still going too fast for me to follow the argument. Regrettably, as I'm sure you'll all understand, it would be a difficult committment for me to undertake to read the whole thing from the beginning!

In #105, Sickofcfs took issue with Tulip's comment:

SickofCFS responded:
I have tried to unpick this argument, but without references to the earlier comments in the thread (a reference to the post number would have sufficed) it is hard for me to determine who said what, when, and to whom.

The inflammatory language on both sides is also most unhelpful in determining the facts of the matter.

I have tried to form an impression of what is going on here, and I do think I have the gist of it, but I can't do better than insearchof's excellent post #107, so I'll just reproduce that as being in line with my own impressions so far:

If you want to read what the argument between myself and Sickofcfs was about, it is in post numbers 62, 66, 69, 71, 72, 75, 76,78, 86. What seems to have happened is that for some people the CCC was when the definition of M.E. came into place and all previous diagnostic criterias for M.E. before then, are now null and void. Which obviously isn't the case. I was diagnosed in the early 1990's by specialists that knew of M.E. and were still able to easily diagnose it. I also attended camps for young people with M.E., the M.E. circle was large and there was much information shared, both from specialists and patients. I didn't learn about these extra symptoms on the internet, I learnt about them from mixing with a large number of experts and patients and it is infuriating to be told that because those symptoms are not in the CCC, which is a new definition, that they are not common, when they actually are. History must not be ignored as it contains vital information about a serious disease, that is what this thread is about.

Mark · May 1, 2011

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

So: One extremely important requirement: a comparison of the Nightingale definition and the CCC, side by side...very similar but subtly different. Given the caveat that the Nightingale definition is "a codification (summary of historical ME)" by Dr Byron Hyde, I am wondering whether this could be taken as the definitive "state of the art" before the change in direction occurred, or whether there are other more established and formal definitions that are relevant? There would seem to be risks associated with merely putting these two definitions up against each other as if they were complete statements of a position, since they are necessarily both imperfect documents in any case: both have deeper contexts in which they would need to be considered, it would seem to me.

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.

Quite so, and surely none of us are unfamiliar with the importance of that point in terms of current 'scientific' approaches in the UK.

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.

A vital distinction, it would seem.

Under the Nightingale definition, summarising all medical investigation into ME since 1955, injury to the central nervous system attributed to enteroviral infection was the main feature.

Whereas under the CCC, the disease is defined not according to this historical causal model based on an understanding of polio, but instead is defined in terms of the 'primary symptom' of fatigue.

Again we would seem to be looking at a kind of scientific revolution - a point of rejection of all summary of scientific investigations into a disease up to that date and of 'starting again' with a re-definition of the symptoms...and notably with subtly different symptoms that exclude a few of the key features of the original disease of ME.

Such scientific revolutions require extraordinarily strong evidence, it would seem to me. Perhaps I misunderstand, but I thought that science demanded some strong degree of proof that an existing theory is false before this can happen.

All I have seen myself, though, is a document at the start of the ME/CFS S Files archive which has Dr Byron Hyde's definition juxtaposed with a document written by Prof Simon Wessely. The juxtaposition of these two documents seems crucial...does anyone have a link to the PDF obtainable here?

http://www.nationalarchives.gov.uk/...595&CATLN=6&Highlight=,MYALGIC&accessmethod=0

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.

However: one does need to examine the comparison point I cited above and set this alongside the difference between the two approaches, I think.

And I might turn the quote above round the other way: you don't need to study the documents closely if you understand what they are, but if you don't understand what they are and what they purport to achieve, you very much do need to examine them closely in order to accept the position being claimed...and you need that documentation laid out clearly and referenced when the claim to understanding is being made.

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.

This sounds fairly sharp...

So: while the origins of CFS lay in the Lake Tahoe cohort, the first outbreak of CFS, apparently, nevertheless some in the area were diagnosed with ME?

This seems quite odd, and quite interesting. If CFS is in some sense a version of ME with a few of the characteristic symptoms absent, what is going on here? Is CFS some kind of evolution of ME? Are we looking at an evolutionary event? I have to mention the toxic mold at this point, to which several MCS sufferers like myself have long believed our condition is inextricably linked, and a form of which was and is - apparently - endemic to lake tahoe, and in season at the time of the outbreak. I have to wonder whether this mold represents some kind of bridge between the ME and CFS eras.

If either side of the debate is not thoroughly aware of the MCS/mold experience, then I submit that both sides may need to be if they are to see the full picture here.

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.

The game of football was born in England towards the end of the 19th century, the first league club being Notts County who were formed in 1862, and the third being Nottingham Forest formed in 1865.
http://en.wikipedia.org/wiki/Nottingham_derby

It is now popular around the world and the World Cup is arguably the most popular sporting contest in the world, rivaling the Olympics as a world event (though I am not going to research the comparative worldwide TV viewing figures and financial aspects just now

).

In the US, football has been rarely played, and is referred to as "soccer", whereas the term "football" is used in the US to refer to a game the rest of the world calls "American Football".

Potayto, potarto, there is a long history of this sort of divergence in the use of words and of pronunciation, it seems...none of which is helpful to understanding between "two nations divided by a common language"...

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.

What a mess!

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.

Thinking aloud...it may even be possible to explore this by analysing past studies of the same question using different cohort definitions and determining how many ME and how many CFS patients the different definitions will produce - this proportion ought to be reasonably consistent across all comparative studies that have used different definitions, and it may even be possible to quantify the mixture of conditions this way...

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.

I like the word echoes here just as much as the "Russian Dolls" concept...

Mark · May 1, 2011

Bob said:
maybe such small differences don't warrant such a heated discussion that has been playing out on this thread.

Maybe this question is worth an essay...but not now...

A change of a single nucleotide (SNP) can likely make quite a big difference...ah yes, that's the phrase I was looking for - no need for an essay - "the devil's in the detail"...

Tulip · May 1, 2011

Dr Chia's website is the best place for learning about enteroviruses and ME/CFS. As you can see numbness is a common symptom.

http://www.enterovirusfoundation.org/symptoms.shtml

A recent study found VP1, RNA and non-cytopathic viruses in the stomach biopsy specimens of CFS/ME patients with chronic abdominal complaints. A significant subset of CFS/ME patients may have a chronic, disseminated, non-cytolytic form of enteroviral infection, which could be diagnosed by stomach biopsy.

For more information:
Chia, JKS, Chia, AY;(2008), "Chronic fatigue syndrome is associated with chronic enteroviral infection of the stomach," Journal of Clinical Pathology 2008;61:43-48.

http://www.enterovirusfoundation.org/associations.shtml

Mark · May 1, 2011

Bob said:
(BTW, rlc, I found your post on this thread really helpful, and interesting. I haven't followed up any of your many helpful links yet though.)

Yes indeed, I found it very helpful too!

I honed in on this section in the middle (in more ways than one) and wondered about zoning in on the epicentre of the dividing line:

During the 1980s the numbers of people getting sick with M.E began to increases dramatically, including the famous outbreak of M.E at Incline village, Nevada known as the Lake Tahoe outbreak. Where doctors Drs Paul Cheney and Daniel Peterson were swamped by a large number of patients who had a sudden onset and acute disease that had all the symptoms of WHO defined M.E which it unmistakably was! It had the incubation period of 4 to 7 days, this was easy to work out because the epidemic was traced back to a girls high school basketball team, who were travelling around the area on a bus to play other teams and wherever they went people rapidly became sick.

Incubation periods are worked out by tracking down the first person in an epidemic to become sick and then working backwards and finding the people who they had come in contact with, who had become sick and working out how long it had taken from contact with the first person to get sick, for the other people to get sick and so on. In all outbreaks of ME it has been between 4 to 7 days

In 1987 things start to get very strange to say the least! Enter the US CDC, Centers for Disease Control, during this year a certain Dr Gary Holmes who was the next year to write the first Chronic Fatigue Syndrome criteria and to invent the new illness CFS, went and had a look at the situation at Lake Tahoe, because some people had bafflingly come to the conclusion that it may be an outbreak of Epstein Barr virus (EBV) he then tested the people there for it and came up with results that showed it wasnt http://www.ncbi.nlm.nih.gov/pubmed/3033337. Two of the other doctors involved in this study were J.A Stewart and L.B Schonberger who became co writers in the next year of the Holmes criteria.

What makes the idea that this outbreak of M.E could have been caused by EBV so blatantly ridiculous as Dr Hyde points out is that the incubation period was known 4 to 7 days, EBV was known at the time and had been for a very long time to have a incubation period of 40 days, so it was impossible for it to be the cause! EBV is spread through saliva even if this girls basketball team had kissed everyone they came in contact with there would have been a 40 day delay in people getting sick, there wasnt there was a 4 to 7 day delay between contact and people getting sick! What turns you from the thought that this group of CDC doctors must have been a bit thick! Into having the thought that something deeply suspicious is going on is when you realise that the CDC has one of the best medical libraries in the world with all the information on the incubation period of EBV in it! And the incubation period of EBV was common knowledge throughout the worlds medical community!

So next we come to the invention of Chronic fatigue syndrome in the first diagnostic criteria for CFS the Holmes definition http://www.ncf-net.org/patents/pdf/H...Definition.pdf written by the same Dr Gary Holmes who turned a blind eye to the whole issue of incubation periods for EBV, co written with the help of 15 other CDC doctors who also ignore the issue of incubation periods! Including J.A Stewart and L.B Schonberger. In this piece of stunningly unscientific nonsense! based on them studying the Lake Tahoe epidemic, they decided to rename WHO defined M.E, Chronic Fatigue Syndrome and say that it was caused by any one of these five viruses chronic, Epstein Barr (EBV), chronic, Cytomegalovirus (CMV) Chronic, Herpes Type 1, Chronic, Herpes Type 2 and Chronic, Measles and said to qualify for a diagnosis of chronic fatigue syndrome you had to have failed tests for any one of these five different diseases, a deeply suspicious conclusion when you consider that none of these five diseases have symptoms anywhere near those of M.E and all of them have incubation periods that are far too long and immediately rule them out as possibilities! It is also completely unscientific to group together five separate viral disease and give them all the same name, especially when the viruses have been identified and everything about them known!

Mark · May 1, 2011

Boule de feu said:
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?

Don't despair Boule de feu!

My understanding is that this is simply part of how the scientific process works...and another concept I have been thinking about again recently is Hegel's concept of thesis/antithesis -> synthesis:

http://en.wikipedia.org/wiki/Thesis,_antithesis,_synthesis

Within such an argument, both sides assume that their views are incompatible, until a revolution occurs at a point of discovery where they realise they were both right. I have sensed a covergence towards such a scientific revolution for quite some time...

Mark · May 1, 2011

Bob said:
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.

Well said Bob!

One thing I think I've noticed (and I may be insulting or wrong here, so apologies if so) is a growing realisation from the ME side of this divide that the people with CFS are also very sick and have at times been resistant to their message because it so often has seemed to be expressed in a way that seemed insulting to those with CFS.

Because the "CFS" condition was defined and dominated by psychologists, and their studies appeared to show that some of the mixed cohorts did contain people with psychological issues, and depression, often an angry line was expressed in arguments to the effect that "I have real ME, the original physical disease, and it's horrific: I don't know what you have and I don't care; maybe you have a psychosomatic condition or depression or ideopathic fatigue, but I'm really sick..."

It's rather tragic that both groups of sick people - and their doctors and scientists too, I suspect - have been insulting each other, or taking insult at each others' point of view, for so long. Perhaps there has been - under intense pressure - in the end some acceptance that the "psychosomatic" concept has some validity. It remains my opinion that this concept is, by Popper's principles, not a scientific one, since the concept in general cannot be disproved. Even the discovery of a pathogen causing a specific condition - the sort of cause which psychologists appear to believe will never be found - would only disprove a psychosomatic origin to that particular disease. The concept of psychosomatism itself would not be disproved by such a finding, since any other undiscovered pathogen - such as are evolving all the time - would then result in a new idiopathic condition which "might or might not" be psychosomatic.

The acceptance of the immoral, unscientific, and devastating hypothesis of psychosomatism is what needs to be consigned to the dustbin of history, and a full proof of the danger and philosophical illogicality of this concept will, I hope, be taught in schools in the future.

It's very sad, though forgivable, that some of the victims of this concept have taken out the suffering they have received on some of the other victims, but that's part of the (il)logic of it, and it does illustrate that we have all been victims - for centuries, perhaps - of this "idea virus"...I do hope we can begin now a campaign to eradicate this virus, as a vital tool in the eradication of human disease...I think it's about time...

Mark · May 1, 2011

Off topic - but hopefully interesting, beautiful, and important...

Admirable though your post was Bob, I want to go beyond a couple of points at the end of your post...

Bob said:
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.

Quite right: all spot on.

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.

Here, however, I want to point towards the future I envisage.

The subject is currently extremely complex, and complexity is in the nature of all life. However: it is also incredibly simple. I am of the firm opinion that, fundamentally, the answer will be ridiculously, frustratingly simple, once we understand it. That is how science has always been, the best revolutionary scientific theories are ridiculously simple though they describe complex phenomena.

It's rather depressing to read that simplexity
http://en.wikipedia.org/wiki/Simplexity
is still regarded as an "emerging theory"...I first encountered the concept in about 1995 and have taken it as read ever since! To me as a mathematician and computer scientist, it seems just obvious, though tragically it takes a very long time for such concepts to be communicated to the mass of the population. If only we were educated along the lines that Plato proposed, with logic and mathematics as the foundation, perhaps this would be less of a problem. But I think he came to be seen as something of a totalitarian.

This equation is fairly simple (though I lack mathematical notation here so I can't represent it properly for you):
Zn+1 = Zn^2 + c
but a plot of it produces this:
http://www.youtube.com/watch?v=G_GBwuYuOOs
and this:
http://www.dailymotion.com/video/x3su4b_mandelbrot-fractal-zoom_creation
and this:
http://vimeo.com/6035941
and in 3 dimensions, the Mandlebulb:
http://www.youtube.com/watch?v=cDd8R0xlkNA
http://www.youtube.com/watch?v=eKUh4nkmQbc
as explained here:
http://en.wikipedia.org/wiki/Mandelbrot_set

Google Mandlebrot for much more.

We seek such equations here...perhaps we can work out together what exactly our equation is: something like:
ME + EBV -> CFS
and we need to see XMRV and other such terms in the dictionary of equations too...

While we're exploring the simple but vital mathematical breakthroughs of the 20th century that people still don't understand and are inadequately taught, I must mention also Mr Godel, and his Incompleteness Theorem (GIT for short):
http://en.wikipedia.org/wiki/G%C3%B6del%27s_incompleteness_theorems
for I would make it mandatory for scientists to demonstrate an understanding of this theorem before they may be licenced to practice science, lest they produce an excess of BS, as so many of them seem to do.

But I am digressing...and I want to develop from this also before I run out of energy...

At the end of the day, we don't all have to agree with each other

Perhaps at the end of the day, we do all have to agree with each other - if there is such a thing as truth, and if we are all searching for it, as we should be. To live in falsehood can only lead to suffering, so it seems imperative that we all come to live in truth. And if there is truth, then those who don't agree with it need to change, for everyone's sake.

In the postmodern era, we have come to believe that there is no truth, because we understood the relativism of every truth, and these opposing truths seemed contradictory, leading us to despair at the prospect of ever finding any kind of solid ground. But in the post-postmodern era, whatever that may be called, I suggest we may come to realise that the unifying truth is to be found in the acceptance and combination of those relative truths, and that there is no problem in the fact that things that are true from one point of view turn out to be false from another, because there is still one simple truth underneath that:
p => Not (p)
I still haven't got round to working through the logical implications and uses of that new mathematical logic of contradiction, though some good work is in progress on that front that I've found - one thing I still wonder is how the work will be useful but I suppose I shouldn't be worrying about that really, if I'm only interested in truth...

But of course that's all looking ahead, and spreading way off topic: Bob is right, and kind, in that while we do not all know the truth, we can still get along in mutual forgiveness based on the realisation that we are all in the same boat, as far as being fallible goes...

And to finish off that digression: what I want to know is, is Maarten exploring the new long-lost Wittgenstein papers that were recently unearthed, and when is he going to explain them to us? I don't see anything about them here:
http://www.maartensz.org/log/2011/NL11.htm
...though I would have expected him to be at least as excited as me by this news:
http://www.bbc.co.uk/news/uk-england-cambridgeshire-13197039

Bob · May 1, 2011

In a nutshell, it seems to me that some people in this thread are saying that ME is a very specific and exclusive (the scientific meaning) disease and are absolutely certain that the historical disease 'ME' should never be watered down or lost or subsumed by 'CFS'.
The other side of the discussion asks that, if the criteria for ME are so exclusive, then what do I suffer from if I don't fit those criteria exactly? Why should i have the CFS label dumped onto me, especially if I have a disease very similar to the historical ME and I fit the Canadian Consensus Criteria, but not the Ramsay definition?
I think these are questions that we can't easily resolve, but we can at least all learn about the history to empower ourselves.

The main problem that I see with the historic ME criteria at the moment is that they are almost preserved in history and are not very current in terms of ongoing large scale research.

As far as I am aware, there has been so little research carried out, over the past decade or two, using the actual ME definitions (because 'ME' has been subsumed by 'CFS'), that it's almost like the 'ME' definition has been preserved in formaldehyde over the years whilst the rest of life has moved on. I'm personally not aware of any recent research that has been carried out using only the Ramsay or Nightingale definitions, other than the research that Byron Hyde does.

In the USA and the UK hardly anyone has an actual diagnosis of 'ME' using Ramsay or Nightingale definitions, whereas hundreds of thousands (?) have a 'CFS' diagnosis in the USA or 'CFS/ME' diagnosis in the UK.

The original studies relating to the Ramsay 'ME' definition were carried out in out-break areas with a relatively small number of cases. If the 'ME' research had been allowed to develop and flourish, and given resources and patients to study, then we don't know where it would have led us. It could have led to all sort of developments, or changes, in the way we understand historic 'ME' and the way in which 'ME' is defined.

So when people say that Ramsay describes 'ME', and CCC doesn't, then I'm not sure how true this is in reality, even if it is true technically and historically. It might be true in medical papers, but historical research papers don't give us the whole picture. They only give part of the picture because of the limited amount of research that has been carried out on 'ME' over the past few years. 'ME' definitions might have changed and developed over the years to look more like the CCC, if they were allowed to develop freely, or they might have developed certain subsets that looked like the CCC. Or they might not. We don't know how they might have changed if given the resources and the patients to study.

As an example of this, we don't know much about the following:
1. The cause of 'ME'.
2. Does whatever causes 'ME', also display different sets of symptoms, depending on how, where or why the disease was precipitated? (i.e. Is the disease, that Ramsay describes, the only way to define this single disease or can the same disease process express an entirely different set of symptoms?)
3. Does whatever causes the disease, described by Ramsay, cause different symptoms in different people, depending on what stage in the illness they are, where they became ill, how they became ill etc.?
4. Can the single disease 'ME', with a single cause, present with many different types of symptoms in different individuals?
5. Can types of symptoms expressed in the single disease 'ME' change over time in an individual?
6. Can the severity of symptoms of the disease 'ME' vary over time in an individual, and between individuals? i.e. Can there be mild, moderate and severe expression of symptoms?
7. If ME is precipitated by different factors (e.g. different viruses), can it have widely different symptoms, unbeknown to, and unrecorded by, Ramsay?

(Although, I know that some of these questions are answered in the ME definitions.)

Science, and our understanding of diseases, is fluid and dynamic, and changes over time. Our understanding of 'ME' has not had the chance to develop much over time because of the politics at play.

Over the years, a lot of research has been done under the 'CFS' banner that gives us much insight into our disease, or diseases. It would be a unwise to dismiss all of this research just because the researchers did not use the name, and exact definition, of the disease 'ME'.

I think we all do at least agree on the fundamentals, and this is what will take our community forwards.

We all agree that the current situation is not acceptable, and we all want vast improvements to the way our disease is treated. There does seem to be some disagreement over how flexible we can be when defining 'ME'. I think this will be only resolved over time by community consensus, proper political engagement and scientific developments. There's probably no fixed answers at the moment, although after reading this, and other threads, I'm now personally leaning towards understanding that ME is a specific disease described by the historical definitions, but I believe that this will only be helpful to our community if the knowledge is now expanded upon and developed on a large scale and brought up to date using latest research and more recently diagnosed and evaluated patients. I think the CCC should also be kept and used for the political constructs 'CFS' and 'ME/CFS', as this will be a helpful step in the right direction for our community, at least politically speaking, until historic 'ME' research is developed on a large scale. The current definitions of 'CFS' and 'CFS/ME' have a lot of research behind them.

If the CCC were to be adopted in the UK and the USA for the disease that they call 'CFS' or 'CFS/ME', then I believe that it could only be beneficial for our entire community, including those who are advocating for a more exclusive definition of 'ME'.

Whether CCC should be used to define 'CFS' or 'CFS/ME' or 'ME', is a legitimate argument to have, but I think that people should be careful to separate this argument from the argument about whether CCC should be used at all. It's very confusing when people start having arguments over the use of CCC without totally clarifying their perspective and their use of the terms 'ME' and 'CFS' from the outset. Often what seems like a huge argument can just boil down to a different and casual use of the terms 'ME' and 'CFS'.

I'm very interested in finding out more about the history of 'ME', and how the 'ME' definitions are different to what the CCC describes. So I intend to do some more reading about it.

Boule de feu · May 1, 2011

Bob said:
In a nutshell, it seems to me that some people in this thread are saying that ME is a very specific and exclusive (the scientific meaning) disease and are absolutely certain that the historical disease 'ME' should never be watered down or lost or subsumed by 'CFS'.
The other side of the discussion asks that, if the criteria for ME are so exclusive, then what do I suffer from if I don't fit those criteria exactly? Why should i have the CFS label dumped onto me, especially if I have a disease very similar to the historical ME and I fit the Canadian Consensus Criteria, but not the Ramsay definition?
I think these are questions that we can't easily resolve, but we can at least all learn about the history to empower ourselves.

The main problem that I see with the historic ME criteria at the moment is that they are almost preserved in history and are not very current in terms of ongoing large scale research.

I would say that there has been so little research carried out, over the past decade or two, using the actual ME definitions (because 'ME' has been subsumed by 'CFS'), that it's almost like the 'ME' definition has been preserved in formaldehyde over the years whilst the rest of life has moved on. I'm personally not aware of any recent research that has been carried out using only the Ramsay or Nightingale definitions, other than the research that Byron Hyde does.

In the USA and the UK hardly anyone has an actual diagnosis of 'ME' using Ramsay or Nightingale, whereas hundreds of thousands (?) have a 'CFS' diagnosis in the USA or 'CFS/ME' diagnosis in the UK.

The original studies relating to the Ramsay 'ME' definition were carried out in out-break areas with a relatively small number of cases. If the 'ME' research had been allowed to develop and flourish, and given resources and patients to study, then we don't know where it would have led us. It could have led to all sort of developments, or changes, in the way we understand historic 'ME' and the way in which 'ME' is defined.

So when people say that Ramsay describes 'ME', and CCC doesn't, then I'm not sure how true this is in reality, even if it is true technically and historically. It might be true in medical textbooks, but historical textbooks and historical research papers don't give us the whole picture. They only give part of the picture because of the limited amount of research that has been carried out on 'ME' over the past few years. 'ME' definitions might have changed and developed over the years to look more like the CCC, if they were allowed to develop freely. Or they might not. We don't know how they might have changed if given the resources and the patients to study.

As an example of this, we don't know much about the following:
1. The cause of 'ME'.
2. Does whatever causes 'ME', also display different sets of symptoms, depending on how, where or why the disease was precipitated? (i.e. Is the disease, that Ramsay describes, the only way to define this single disease or can the same disease process express an entirely different set of symptoms?)
3. Does whatever causes the disease, described by Ramsay, cause different symptoms in different people, depending on what stage in the illness they are, where they became ill, how they became ill etc.?
4. Can the single disease 'ME', with a single cause, present with many different types of symptoms in different individuals?
5. Can types of symptoms expressed in the single disease 'ME' change over time in an individual?
6. Can the severity of symptoms of the disease 'ME' vary over time in an individual, and between individuals? i.e. Can there be mild, moderate and severe expression of symptoms?
7. If ME is precipitated by different factors (e.g. different viruses), can it have widely different symptoms, unbeknown to, and unrecorded by, Ramsay?

(Although, I know that some of these questions are answered in the ME definitions.)

Science, and our understanding of diseases, is fluid and dynamic, and changes over time. Our understanding of 'ME' has not had the chance to develop much over time because of the politics at play.

Over the years, a lot of research has been done under the 'CFS' banner that gives us much insight into our disease, or diseases. It would be a unwise to dismiss all of this research just because the researchers did not use the name, and exact definition, of the disease 'ME'.

We all agree that the current situation is not acceptable, and we all want vast improvements to the way our disease is treated. There does seem to be disagreement over how flexible we can be when defining 'ME'. I think this will be only resolved over time by community consensus, proper political engagement and scientific developments. There's probably no fixed answers at the moment.

But I think we all do at least agree on the fundamentals, and this is what will take our community forwards.

If the CCC were to be adopted in the UK and the USA for the disease that they call 'CFS' or 'CFS/ME', then I believe that it could only be beneficial for our entire community, including those who are advocating for a more exclusive definition of 'ME'.

Whether CCC should be used to define 'CFS' or 'CFS/ME' or 'ME', is a legitimate argument to have, but I think that people should be careful to separate this argument from the argument about whether CCC should be used at all. It's very confusing when people start having arguments over the use of CCC without totally clarifying their perspective and their use of the terms 'ME' and 'CFS' from the outset. Often what seems like a huge argument can just boil down to a different and casual use of the terms 'ME' and 'CFS'.

I'm very interested in finding out more about the history of 'ME', and how the 'ME' definitions are different to what the CCC describes. So I intend to do some more reading about it.

And when you do, I would love to find out what your conclusions are. ;-)

Mark · May 1, 2011

Tuliip said:
If you want to read what the argument between myself and Sickofcfs was about, it is in post numbers 62, 66, 69, 71, 72, 75, 76,78, 86. What seems to have happened is that for some people the CCC was when the definition of M.E. came into place and all previous diagnostic criterias for M.E. before then, are now null and void. Which obviously isn't the case. I was diagnosed in the early 1990's by specialists that knew of M.E. and were still able to easily diagnose it. I also attended camps for young people with M.E., the M.E. circle was large and there was much information shared, both from specialists and patients. I didn't learn about these extra symptoms on the internet, I learnt about them from mixing with a large number of experts and patients and it is infuriating to be told that because those symptoms are not in the CCC, which is a new definition, that they are not common, when they actually are. History must not be ignored as it contains vital information about a serious disease, that is what this thread is about.

Thanks for pointing me back at the thread of the original argument Tulip, that's very helpful for understanding the backplot...I hope we're all ready to move on now?

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

insearchof

Senior Member

Boule de feu

Senior Member

Boule de feu

Senior Member

WillowJ

คภภเє ɠรค๓թєl

WillowJ

คภภเє ɠรค๓թєl

Mark

Senior Member

Mark

Senior Member

Mark

Senior Member

Mark

Senior Member

Tulip

Mark

Senior Member

Mark

Senior Member

Tulip

Mark

Senior Member

Mark

Senior Member

Mark

Senior Member

Mark

Senior Member

Bob

Senior Member

Boule de feu

Senior Member

Mark

Senior Member