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CFS vs ME comparison chart

Discussion in 'General ME/CFS Discussion' started by Kinesis, Aug 18, 2016.

  1. Kinesis

    Kinesis

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    http://m.hfme.org/site/mobile?dm_pa...2d53a1&fw_sig_social=1&fb_sig_network=fw#3013

    Okay, that link looks insanely long, but it leads to a chart that gives an exact definition of ME that I haven't seen before.

    One of the things it says is that ME onset is always instant and severe, whereas CFS is always gradual.

    Does this mean that severe is always ME? Are there any cases here of severe CFS that came on gradually but otherwise are identical to ME?

    All of the conflicting information about this illness is making my mind boggle.
     
  2. halcyon

    halcyon Senior Member

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    There has not been a lot of formal research on the topics you are asking about so it's hard to say. This would require really good epidemiological study done on a large group of patients using the various ME and CFS criteria, which has just never been done.

    I would guess that there are people that match CFS but not certain ME criteria that have sudden onset of fatigue. I would also guess that there are people that meet certain ME criteria that have gradual onset of symptoms.

    Jodi Bassett (and Byron Hyde, whom she took a lot of her information from) believed this yes. They are talking about really strictly defined Ramsay ME when they say this though. Jodi did not consider the CCC and ICC ME definitions to be valid Ramsay ME, which some will agree with and some won't.

    This is largely due to the assumption that everyone is talking about the same thing when they say CFS or ME, but they're not. You have to assess what criteria someone is using when they use these terms. Some believe that they are fully interchangeable and others staunchly believe they aren't. The answers you get will depend on who you ask.
     
    Last edited: Aug 18, 2016
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  3. Kinesis

    Kinesis

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  4. Hutan

    Hutan Senior Member

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    Yes, I think that chart gives the impression of much more certainty about many things than there actually is. I totally understand why someone with severe ME would want to say 'my illness has nothing to do with mild symptoms that can be termed 'burnout' and I need it to be taken very seriously'.

    But I think ME is not so easily defined. I and my two children suddenly became ill at the same time after a severe gastric flu. We all met the CCC definition. My daughter was never as seriously affected though and had mostly recovered after 2 years. My son and I remain ill at a moderate to mild level (ie not able to work or attend school, mostly housebound).

    Even in the Ramsey-documented Royal Free Hospital outbreak of ME, not everyone was severely affected.

    Re the requirement to have brain lesions for an ME diagnosis: An MRI I had done a couple of years after onset didn't show up anything remarkable. But I remember some people on PR have said that they they had lesions show up on MRIs taken early in their illness that disappeared on later MRIs.

    Until more is known, I think we should just acknowledge the uncertainty and be kind to each other. Someone with the symptoms of CCC-defined ME but with gradual onset or with only a mild severity is still suffering with something. And, at this point, I don't think anyone can know that those people don't have the same illness as those with rapid-onset, severe ME.
     
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  5. sorin

    sorin Senior Member

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    It is said that "CFS is not associated with neurological damage (to the central and autonomic nervous systems) or a loss of homeostasis." . This definitive statement excludes persons that have CFS and neurological damage.
    For example I have neurological problems (damage) but I definitely do not fit in the ME description, but mostly in the CFS description. But according to the quoted sentence now I do not fit anymore to the CFS category because I do have neurological damage!!!
     
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  6. halcyon

    halcyon Senior Member

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    I think what they're getting at is that it's not a requirement for a CFS diagnosis. It's not exclusionary either though. The thing to keep in mind is that several of the CFS definitions are intended as research only definitions. They try to keep conflating factors to a minimum. Clinically, of course it's possible to have more than one thing wrong with you, so you could have both CFS and neurological damage.
     
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  7. Invisible Woman

    Invisible Woman Senior Member

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    I've never yet met a real human who fits the exact shape of a pigeon hole....or a tick box.
     
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  8. skipskip30

    skipskip30 Senior Member

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    I still think ME/CFS is the best way to describe the illness for now. Given that we don't even know what causes the illness it seems odd to be trying to divide up groups under certain names already. I know the name CFS is awful but it is what it is for now.
     
  9. Skippa

    Skippa Anti-BS

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    Oh hurrah, I don't have CFS or ME because that list excludes me several times over. I am a healthy mix of symptoms from BOTH sides of the list, and the list then tells me I CANNOT have the disease because I don't have xyz.

    Still, I've got CFS because that's what they call it around my neck of the woods.

    Even though that list tells me I cannot have CFS because ONLY ME features delayed onset fatigue after exercise.

    This is exactly the reason people choose to use ME/CFS. Or CFS/ME. That list muddies the waters and clears up precisely nothing.
     
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  10. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Being diagnosed with CFS does not exclude you from having ME or the other way around. It`s just names with diagnostic criteria based on symptoms. I thought SEID (systemic exertion disease) was brilliant, cause at least then we could differentiate between the ones having PEM, and those that don`t.

    Having a chart like this without having any biomarkers at all, is pretty much pointless.
     
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  11. JaimeS

    JaimeS Senior Member

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    Agreed, @Marky90 -- I'm probably smack-dab in the middle of those two, like @Skippa is.

    I had neither a gradual nor instant onset. I had what I call 'punctuated equilibrium' : a set of health setbacks, never fully recovering from any of them. Then I had a 'straw that broke the camel's back', from which acute ME symptoms arose. If you look at me the month before that, then you'd say I definitively had acute onset. If you looked at me over five years, you'd say it was definitely gradual. It literally depends on the scope of your point of view.

    Also, even Fukuda does not ONLY require that you have fatigue. There is an enormous amount wrong with that dx criteria -- not the least of which is that it is polythetic -- but you can't strawman it by calling it 'just fatigue'.

    The 'ME has an incubation of 4-7 days' is also incredibly specific. It all appears to be a bit too definite given what little we know.

    Something I've struggled with, lately, is that definite point of view. We all have our suspicions, but it's incredibly important to keep an open mind, or we turn our attention away from potential sources of knowledge because we are too certain.
     
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  12. sorin

    sorin Senior Member

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    A very interesting statement from the document says: "CFS was created in the late 1980s and did not exist prior to this time" The word "created" means that someone created it artificially in the lab. And it appeared exactly in the period when HIV appeared! What a coincidence ! Is this another "bullshit conspiracy theory" or is more than a simple coincidence?
     
  13. Denise

    Denise Senior Member

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    I believe the reference to "creation" of cfs means the term chronic fatigue syndrome was created in the late 1980s. (The CDC investigation of the outbreaks led to the watered down disease description that became [edit to add] known as chronic fatigue syndrome.)
     
    Last edited: Aug 18, 2016
  14. Kinesis

    Kinesis

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    This whole conversation is very fascinating and fits more with what seems true to reality than that chart.

    After everything else i've been researching it just seemed to think itself so definitive and certain, so I thought the smartest way of checking it would be to ask people actually going through it. Nothing else I've found even comes close to claiming it knows what's up.

    But then most sources still quote GET and CBT as legitimate remedies.
     
  15. TigerLilea

    TigerLilea Senior Member

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    At this point in time no one can say exactly what ME or CFS is. Personally I think they are the same thing with different sub-sets. Others don't agree. I was diagnosed with CFS and mine came on very suddenly.
     
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  16. Snowdrop

    Snowdrop Rebel without a biscuit

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    By creation of cfs they do indeed mean creating the term to replace ME. ME was termed for the Royal Free hospital outbreak if memory serves. Then Strauss at CDC along with colleagues across in the UK decided to denigrate sufferers with the term cfs and pushed it and employed media to support it.

    I accept that many accept that the term cfs is out there and so it is what it is but my own opinion is that I would prefer the use of ME --but what that refers now to is a tricky issue.

    Is there a case for both? Waaay beyond my paygrade. I had an onset much like Jaime S but it started decades ago --long before any info was out there enough to be able to figure out what was happening so my description of this is retrograde or forensic if you will as to what happened to me and how.

    I agree with the idea that what we are collectively looking at between us may be different subsets of illness with possibly a subset that is a misdiagnosis category.

    If you are at all interested you might like to have a look at a thread that discusses this issue of history of the name
    See here: http://forums.phoenixrising.me/inde...-disdain-how-hhs-buried-me.37318/#post-592639
     
  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    When you say that it's not clear to me what you mean. Do you mean that you were diagnosed with illness that matched symptoms that fit some diagnostic criteria that refers to cfs and not ME?

    I agree that the diagnostic categories leave things for us unclear. I was not sudden (1 time onset) but I have ME by my understanding of it.
     
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  18. sorin

    sorin Senior Member

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    Even for a non-native English speaker like me it is obvious that to name a thing and to create a thing are two completely different notions. I assume that whoever wrote that document has proper understanding and property of the words. The author did not say "the disease was named CFS for the first time " but said "CFS was created in the late 1980s and did not exist prior to this time". And what about the fact that during thousands of years of human history this disease did not exist but it appears "naturally" and suddenly in 1980's!
     
  19. Kinesis

    Kinesis

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    That, along with the tone in some places makes it easy to imagine it being written by a CFS/ME sufferer who was really sick and tired of people saying it wasn't a real disease. If you never brought it to an actual patient group and that's all you'd seen you'd believe it. It looks super convincing.

    But clearly it's also just plain incorrect.

    Does anyone know of legit studies done among a very wide patient group that looks at the rythyms each person's illness takes? It would be fascinating to see how these things overlap in different ways.
     
  20. Snowdrop

    Snowdrop Rebel without a biscuit

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