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seems unfair to lump ME & CFS

Discussion in 'General ME/CFS Discussion' started by fibrodude84, Aug 29, 2014.

  1. fibrodude84

    fibrodude84 Senior Member

    Not trying to stir a fight but in learning what's wrong with me and looking at the research I just don't understand why the CFS community is taking the term ME which is a neurological condition with different symptoms and prognosis.

    CFS is awful and serious and the name doesn't convey that but it seems wrong to take the name of another illness.

    Just my 2 cents when digging to see if they were the same illness which my doctors says they are.

    I don't know which i have but my brain scan MRI is fine.
    Last edited: Aug 29, 2014
  2. PennyIA

    PennyIA Senior Member

    Not wanting to argue either and I do think there are a lot of differing opinions.

    But in my experience... in the US there is no such thing as ME - the 'name' doesn't exist for the medical doctors it's not in their references and it's not in any diagnostic codes. It's as if they've never heard of any such thing.

    They diagnose CFS and CFS only. And if I read the CCC and ICC - I meet the diagnostic criteria for ME. I think 'chronic fatigue' with no known cause is a symptom and is NOT THE SAME AS CFS. In non-USA areas they may use CFS to diagnose chronic fatigue symptoms... heck, in the US they use CFS to diagnose it as well as they aren't good about paying attention to things like the CCC and ICC.

    That said, I think there may be MULTIPLE conditions getting mixed into and confusing the whole issue. But until we get good studies and good testing/biomarkers, we won't be able to differentiate. RIght now, I use the term "ME/CFS" simply because I don't want people in the USA thinking I'm just a little tired. And so that non-US people can understand that I probably have ME though I'll NEVER be eligible for that diagnosis in today's world.
    Nielk, Tammy, merylg and 9 others like this.
  3. worldbackwards

    worldbackwards Senior Member

    Ultimately, CFS was a construct made up by psychiatrists intending to supercede ME, which they thought to be a non-illness, and throw it in with various fatigue based psychiatric disorders. It is a prison for us created by our enemies and I'm not going to play their game by self-identifying with it
    merylg and Wildcat like this.
  4. ukxmrv

    ukxmrv Senior Member

    It's always a topic that is going to stir up an argument. There have been plenty of threads and comments on this forum on the topic.

    My personal viewpoint is that these are separate but equal diseases. That is until we have some research done that compares different populations and criteria against one-another.

    Hopefully we will know one day if the current CDC CFS population is the same as the ones from the original ME epidemics like the Royal Free one. We don't know because no one has done in research.
    Tito and merylg like this.
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    A thought that occurred to me is that Ramsay's ME will probably never occur again. Ramsay coined the term, I believe, to describe an epidemic at the Royal Free (where I have an honorary contract although I do not see patients there now). I suspect that 99.999% of viruses that have caused human disease are now extinct in terms of there still being virus particles derived from their DNA. Virus evolution is not like ours. There are no species. The entire pandemic of Asian flu would have been due to 'daughter copies' of one mutant virus particle. There are probably none in existence now, except maybe in research labs. Within six months of the Royal Free epidemic the cause of ME may have been extinct for ever. Which maybe shows how muddled we are about what we mean by 'a disease'. All I think we can expect ME to be now is a sequence of events occurring in a person that is sufficiently analogous to what happened in the Royal Free victims to put it under the same heading. I am not sure whether having anything show up on a scan matters - there were no scans then so nobody knows if Royal Free ME showed anything on a scan.
    horcrux, merylg, TigerLilea and 3 others like this.
  6. ukxmrv

    ukxmrv Senior Member

    There are still survivors of the RF epidemic alive today.

    If we want to know now or in the future this is the group I would like to see studied / compared or at least samples taken for the tissue bank. We have scans now and different tests to run but as we don't know yet what caused their ME we may not have the right test yet.

    In addition to the RF group there are also many patients diagnosed by Ramsay et al still alive.
    heapsreal, merylg, justy and 3 others like this.
  7. SOC

    SOC Senior Member

    I think the situation is probably different in the US where there is no such diagnosis as "ME". The illness many of us us think of as ME was subsumed under the heading "CFS" along with multiple other fatiguing conditions. Here, it might be more accurate to say that ME (as defined by the ICC) is a subset of CFS.

    The name "CFS" was created to define an outbreak that seems clearly ME (the Lake Tahoe outbreak), but has since been stretched to include any long-term fatiguing condition. In that sense, the original CFS probably was exactly equivalent to ME. (Stupid name, though, regardless of what it was originally meant to identify)

    We will probably have the best luck by insisting on subsetting the overly broad CFS catch-all definition rather than claiming, at this point, that ME is not CFS. That's rather like saying an oak is not a tree because it has unique features that other trees don't have.

    My personal feeling at this point in time is that we need to eliminate the CFS diagnosis as it is far too broad to be meaningful, but we need to be able to identify the several (many?) illnesses that are currently subsumed under that heading so that they can be properly studied and treated. Medicine has allowed the thinking, "This illness is imaginary because there is not enough consistency in the symptoms to be anything real" while completely missing the obvious point that if you are looking at multiple vastly different illnesses, there won't be the kind of homogeneity of symptoms you'd expect in one illness. :rolleyes:

    My guess is that CFS (by the CDC and Oxford definitions) includes some forms of MDD as well as other mental illnesses, primary hormonal disorders, OI from multiple causes, fibromyalgia, self-limiting post-viral fatigue, over-training syndome, and others. ME is probably only a tiny subset of the entire group. Until we can separate it out and study it as a unique entity, we won't be able to distinguish it's identifiable features. That's where we need to focus our energy, IMO -- in separating out the members of the huge fatiguing illness family, not in claiming that we are not a part of it.
    mango, horcrux, merylg and 8 others like this.
  8. fibrodude84

    fibrodude84 Senior Member

    I agree that it's likely that there are dozens of sub-types under this CF umbrella. I think that's the problem is that the medical establishment is sort of dismissive because no one thing works for most people. We may all share these symptoms but our journey to getting them can be vastly different ranging from viral, bacterial, trauma (physical or emotional), and others that probably have existing illnesses which exacerbate things making it hard to know what is what.
    merylg and PennyIA like this.
  9. SOC

    SOC Senior Member

    It may be that it is a question of getting to the same endpoint by different paths, but I suspect that if we were properly subsetted we would find that there are multiple endpoints as well. In other words, we do not all have the same illness, just illnesses with some similarities in symptoms. For example, we are finding that fibromyalgia and CFS, which were once thought to be the same illness, have very different patterns in objective measures, even though there's quite a bit of overlap in symptoms. I believe Dr Klimas is finding that GWI, which has a significant symptom overlap with CFS, has a very different immune profile. That is the kind of research we need, with objective measures, to try to separate the various illnesses currently subsumed under "CFS".
    merylg and PennyIA like this.
  10. minkeygirl

    minkeygirl But I Look So Good.

    Left Coast
    @Jonathan Edwards Please break your responses into 2 or 3 line paragraphs. There are many of us here with serious cog/neuro issues that can't read that much text.
    Last edited: Aug 30, 2014
    heapsreal likes this.
  11. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    It's true that the definitions are problematic, but it does not follow that there is a different clinical entity properly identified by each of the different definitions.

    Oxford-CFS, to take the worst example, is not an illness, nor a syndrome, nor or any kind of clinical entity at all--it is merely a collection of people who are a little bit hard to diagnose: they cannot be diagnosed in a single office call, ten or a dozen blood tests, and whatever it occurs to the examining doctor (or psychiatrist, or nurse psychiatrist, etc.) to check for during that single office call.

    Turns out at least half of people diagnosed with "CFS" have something else, such as MS, Lupus, a pituitary problem (hypo- or hyper-), MDD, and so on. (not that you can't have both ME and one of these other diseases, but some people are genuinely misdiangosed)

    In my opinion, it would be better if we gave pre-diagnosed patients a diagnosis of symptoms and kept looking for a disease, rather than having a disease named for a symptom and encourage doctors to give out a diagnosis on a "wastebasket" basis.
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  12. zzz

    zzz Senior Member

    The CDC and the WHO both classify CFS as a neurological disorder. The WHO uses the same diagnostic code for both CFS and ME.

    It appears that the CDC definition is often underestimated in its selectivity. From the definition:
    The requirement that at least four of these physical symptoms be present concurrently rules out most cases of mental illness. More specifically, the paper Data Mining: Comparing the Empiric CFS to the Canadian ME/CFS Case Definition by epidemiologist Leonard Jason found:
    For his definition of CFS, Jason started with the Fukuda definition but the pruned it by doing the following:
    @SOC, this refinement seems to directly address your objections to the Fukuda definition, and appears to result in a definition that is essentially what we are calling ME. See the older PR thread here for further details. Specifically, there is the following excerpt from one of the posts:
    As Leonard Jason is well known in the ME/CFS community for his accurate work, I think it's fair to assume that "CFS cases correctly identified" means just that - cases that we would call ME.

    As it has been demonstrated in many places that the empirical CDC definition identifies a significantly lower percentage of true CFS cases than the Fukuda definition, and that the Fukuda definition in turn identifies a lower percentage of true CFS cases than the Canadian criteria, it would seem that Jason's conclusions imply that the Fukuda definition would identify somewhere between 80% and 86% of CFS cases correctly, with the exact number being closer to the middle of these two percentages rather than at either extreme.

    So from this work, it would appear that the Fukuda definition correctly identifies the great majority of true ME/CFS cases - approximately five out of six. That's not as good as the Canadian criteria (which identify about seven out of eight cases correctly), or the ICC, or the Ramsay definition, but it is not so bad as to be unusable or worthless. On the other hand, the Oxford criteria really just define chronic fatigue, and as chronic fatigue is many times more prevalent than ME/CFS, studies based on the Oxford criteria cannot be assumed to have any relevance to ME/CFS.
    Last edited: Aug 31, 2014
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  13. SOC

    SOC Senior Member

    I have a great deal of respect for Dr Jason and am impressed with his body of work. I think the issue with the paper in question is how one identifies "true CFS" without objective measures. Comparing the empirical, Fukuda, and CCC by whether they identify "true CFS" is dependent on the list of symptoms the researcher decides define "true CFS". "True CFS" at this point is a construct based on opinions, so any definition can be said to best identify "true CFS". It was a valiant effort, but doomed to sloppy subjectiveness without an objective marker that defines the illness. It was probably the best that could be done at the time with the information currently available. That doesn't mean it is highly accurate.

    I was trying to be clear that I was distinguishing a more specific definition of the illness -- ME, from the broader classification CFS. For my purposes, ME is defined by the ICC and includes carefully defined PEM/PENE (not exercise intolerance) as a requirement along with neurological, immune, and energy metabolism symptoms. Fukuda, and even the CCC (which is an ME/CFS definition, not an ME definition) are less specific. That does not mean that they don't identify a currently unidentified serious illness, but simply that they are less specific and include a broader group of patients. Whether the broader group is a more or less accurate representation of the illness is as yet unknown.

    It may be that we will find that Fukuda or the CCC catch more "true" patients because they will include more patients in the early stages or with mild versions while the ICC only catches patients with longer-term or more severe cases of the same illness. This happened with AIDS. The AIDS definition excluded most HIV positive patients because they hadn't developed the serious symptoms that defined AIDS, so no one knew they had the same illness until the virus was identified and doctors realized that many more people had the virus than had AIDS. We could be in a similar situation. We won't know until we get an objective measure and define the illness as those who meet that measure. That may exclude many people we now consider PWME and include others we wouldn't think of as PWME now. There is no true definition of this illness without a clear understanding of the pathophysiology, which we don't have at the moment.

    It is generally accepted in medical research that the best way to identify the features of an illness is to start looking at the clearest and most extreme cases. Once you've identified what makes that group distinctly different from healthy people, you have a unique measure you can use to start looking at broader patient groups to see if that measure exists in them as well. We need that in CFS as well -- research done on smaller specific subsets to try to tease out what identifies the illness or illnesses subsumed under the ridiculously broad CFS umbrella.

    ICC-ME is one of those subsets. There are likely other subsets that can be identified by symptoms (GI symptoms/no GI symptoms, OI/no OI), or objective measures (specific immune profiles, failed CPET test). Eventually we'll sort out which subsets are part of the same illness and which are different illnesses. But until we accept that CFS by Oxford or Fukuda subsumes too many different conditions to be a single illness, we will continue to have inconclusive research.
    I disagree. The following symptoms can all be part of mental illnesses
    • post-exertion malaise lasting more than 24 hours (if you include exercise intolerance or "fatigue" as PEM, which many doctors do)
    • unrefreshing sleep
    • significant impairment of short-term memory or concentration
    • muscle pain
    • headaches of a new type, pattern, or severity
    So a patient with primary mental illness could easily meet Fukuda with 4 of the above symptoms. Yes, it rules out most cases of mental illness, but it still includes many, which is simply not good enough, imo. There are millions upon millions of people with mental illness. Excluding most of them still can leave a large number, possibly even a majority of the group compared to the relatively few ME patients, still under the CFS umbrella distorting research into features and treatments.

    Fukuda also subsumes OI-only conditions and primary sleep disorders under CFS. Fukuda is simply too broad to be catching a single condition. That does not mean it is not identifying patients with serious conditions that need attention, just that it is probably not identifying a single illness. If you don't believe me, do a little experiment. Search for illnesses that include the Fukuda symptom list. You won't get only one illness, especially if you only use 4 of the most common symptoms -- poor sleep, memory or concentration problems, headaches, muscle or joint pain. Those alone will collect a huge number of patients with conditions other than the very specific ICC-defined ME, and many of them won't even have what most of us would recognize as ME/CFS, or even CFS.

    I never said Fukuda was worthless. I said it is a very broad umbrella definition that includes a large number of fatiguing conditions which make it difficult, if not impossible, to tease out the specific illnesses subsumed under the CFS heading. We know this already by the vague results of research using the Fukuda definition. All researchers find is that CFS is a heterogeneous condition with no clear patterns. Well duh! It's like taking the entire population of a city, looking for symptoms of pregnancy, and then claiming there's no such thing as pregnancy because there is no consistent pattern of pregnancy in the group as a whole. That doesn't mean there aren't useful and interesting subgroups in the large population -- men, children, non-pregnant women -- it just means you can't identify the features of a specific condition if your sample set is too broad. Fukuda is. It simply doesn't work as a research definition because is cannot identify a single condition, or even a couple of closely related conditions.

    I cannot accept that Fukuda uniquely defines ME. The simple fact that is does not require PEM/PENE is enough for me. That doesn't mean that Fukuda CFS does not include ME, just that it includes many other conditions as well. That is, an ME patient will meet the Fukuda definition, but a Fukuda CFS patient will not necessarily be an ME patient.

    IMO, CFS and ME are not completely different illnesses, nor are they equivalent. They are set and subset.
    Nielk, heapsreal and merylg like this.
  14. Hip

    Hip Senior Member

    This is something that occurred to me also: that the precise nature of pathogen-induced ME/CFS might change a bit over the decades, as viruses, or genetic variant subtypes of viruses, come and go in human populations. RNA viruses like those of the enterovirus genus have a high mutation rate, and so tend to generate lots of new viruses or viral subtypes.

    However, even if the precise nature of pathogen-induced ME/CFS may change a bit over time as new pathogens come and go, there may be some core invariant symptoms present in all forms of pathogen-induced ME/CFS. These core symptoms may be invariant because they arise from the same basic pathophysiological mechanisms that are always triggered by all pathogens associated with ME/CFS.

    As an example of a proposed pathophysiological mechanism always triggered by all pathogens associated with ME/CFS, consider Michael VanElzakker's sickness behavior theory of ME/CFS: VanElzakker posits that ME/CFS is a form of chronic sickness behavior which is triggered by certain pathogens (sickness behavior of course being defined as the mental symptoms and behavioral changes that arise when you come down with an infection like the flu; sickness behavior symptoms are very similar to those of ME/CFS).

    As I understand it, sickness behavior is specifically triggered by the inflammatory cytokines IL-1beta, TNF-alpha and IL-6; therefore any chronic infectious pathogen that elicits the release of these cytokines has the potential to induce sickness behavior, and thereby, according to VanElzakker, the symptoms of ME/CFS. These sickness behavior symptoms would I imagine not vary much from one ME/CFS-inducing pathogen to the next, because provided the pathogen can induce these specific cytokines, the same sickness behavior mechanism would be triggered, generating identical symptoms.

    But superimposed over these invariant sickness behavior symptoms, you may get variations in ME/CFS symptomatology due to the particularities of each new infectious pathogen — particularities that may add additional symptoms.
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    I hate these threads because one can't accurately diagnose cfs or me. Maybe ME is a subset of cfs.

    No one can say what happened at the royal free hospital is different from what happened in Iceland or any other type of outbreak/ cluster. It could be the same or different, maybe like SARS.

    We know it's an infectious type onset that one doesn't fully recover from, mostly.

    Post viral syndrome is probably just as accurate as any other description? ?
    ahmo, minkeygirl and SOC like this.
  16. Aerose91

    Aerose91 Senior Member

    Personally I don't even refer to myself as having ME anymore simply for the reason that anyone who I tell goes home and Google's it and bam- chronic fatigue syndrome pops up. They go; "oh, u have chronic fatigue huh?" and their whole demeanor toward me changes... permanently.

    I now say that I have an acquired mitochondrial disease. I believe that is an honest and accurate answer and doesn't clump me with anything called CFS, which I will never associate with.
    Last edited: Sep 6, 2014
    ahmo likes this.
  17. cosmo


    I personally don't know the difference and don't know how you tell.

    I apparently have one of them, I'm just not sure which or what the differences are until I came on here. I have seen there are ways to see, however the sheer amount of reading on it just makes me feel swamped and I cannot get past a few lines.
  18. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    This argument will never end until specific biomarkers or specific treatments are developed.

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