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ME and cfs to be classified as seperate illnesses

Discussion in 'General ME/CFS News' started by Gerwyn, Apr 21, 2010.

  1. Mithriel

    Mithriel Senior Member

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    What you are describing sounds like the typical flare ups of ME as described by Ramsay. I think the cause of much of the confusion is thinking of ME in the same way as CFS. With CFS requiring long term fatigue or problems functioning for six months it doesn't allow for the periods of normal/almost normal health that ME often has. Remember ME was described from epidemics so they knew their patients had it right from the start and were able to follow them. Many seemed normal much of the time.

    It is like MS. With the use of MRIs MS is being diagnosed much sooner than it used to be. People have episodes then are well and it can be years later that they develop what used to be recognized as MS. But they have had MS from the outset.

    In many people with ME the ONSET is sudden, but the disease progression is GRADUAL with each infection or period of overactivity leading to more severe disease.

    The CFS definitions are more likely to pick up EBV type infections where the initiating infection never seems to lift but that is not typical in ME. The initial illness can be trivial, the initial ill health minimal but the damage is done and you have the disease eating away at you causing damage that is not readily apparent.

    Mithriel
  2. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    As far as ICD-10 (2007 version) is concerned, this is indeed the case. The WHO has never set out how it defines the three terms or how is views the relationship between the three terms.

    There are some within the UK who insist that the WHO considers "Chronic fatigue syndrome" a synonym to "(Benign) myalgic encephalomyelitis".

    But I don't consider there is sufficient information within ICD to assume this, nor from the statements and "clarificiations" various WHO secretariat have made in the past - so I make no assumptions as to whether WHO considers "Chronic fatigue syndrome"

    a synonym
    a sub-entity
    or a best coding guess​

    or what WHO understands by the term.

    There is no text at all within Volume 1 or Volume 3 apart from the following:

    Volume 1: The Tabular List

    http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm g933

    Chapter VI

    Diseases of the nervous system
    (G00-G99)

    Other disorders of the nervous system
    (G90-99)

    [...]

    G93 Other disorders of brain

    G93.3 Postviral fatigue syndrome
    Benign myalgic encephalomyelitis


    Note that "Chronic fatigue syndrome" is not included with PVFS and (Benign) ME within Volume 1 at G93.3.

    In Volume 3: The Alphabetical Index, Chronic fatigue syndrome is indexed to G93.3 thus:

    Syndrome continued

    [...]

    - fatigue F48.0
    - chronic G93.3
    - - postviral G93.3


    So this is the only text that appears in ICD-10 for all three terms.

    However, there is the potential, in ICD-11, for considerably more text to be included. The document at this URL sets out the "Content Model" for the population of content:

    https://sites.google.com/site/icd11...SpecificationsandUserGuide.doc?attredirects=0

    There are also some example populated models on the ICD Revison site.

    An idea of just how much text could be included can be seen from the i-CAT demo and from the i-CAT YouTubes, for which I've already given the URL in a previous post.

    So the potential for including definitions, textual descriptions and other content in ICD-11 is an actuality and not just idle speculation on the part of Suzy C.

    Although the ICD-11 Alpha Draft is expected to be released between 10 and 17 May, it isn't clear, at this point, how far advanced the draft will have progressed with the population of content for any given chapter and particularly, for Chapter 6 (Neurology) and Chapter 5 (Mental and Behavioural Disorders).

    But from the i-CAT demo, the classifications under "Somatoform Disorders" appear to remain congruent with those in ICD-10 - not with the DSM-5 Work Group proposals for radical structural changes to this section.

    Since all volumes of ICD-11 are going to be electronically available and fully integrative, one might anticipate that "Chronic fatigue syndrome" (currently indexed, only) is likely to be accounted for within Volume 1, in this forthcoming version.

    The listing for G93.3 in the i-CAT demo and training platform has not had all its fields populated - for example, "Exclusions" is not yet populated, so it tells us little yet about what the intial proposals for the inclusion (or not) of "Chronic fatigue syndrome" in the Tabular List of ICD-11 might be.

    There is evidence of discussion (in a Canadian PowerPoint presentation and an ICD Revision working document) between WHO and WHOFIC of the future utility of "Clinical Modifications" and whether these might eventually be phased out in favour of one global edition of ICD.

    Suzy
  3. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    On a general note, I don't like the term "Chronic fatigue syndrome" at all.

    I don't like the way it has been hijacked by psychiatry and psychosomatics or the way it is used within clinical practice and particularly, the liaison psychiatry and psychosomatics research field, indiscriminately and interchangeably with "fatigue", and "chronic fatigue".

    However, until the science is sorted, my concern is this:

    Within the UK, some NHS clinicians (and some private specialists, like Dr Willy Weir) will only use the term "CFS" or "CFS/ME". Correct me if I'm wrong, but I don't think Dr Sarah Myhill favours the term "ME", either.

    As some of you know, I am not a patient myself, but my family experience is that an initial diagnosis was made by an NHS consultant paediatrician of a post viral condition. Follow-up letters from the hospital to the GP and for the school, in order to keep Educational Welfare Officers informed and social services off our case, used the term "PVFS" and even "Prolonged viral fatigue syndrome" - though the very severe symptoms were similar to the neurological impairment following a stroke rather than "fatigue".

    When no improvement had occurred three months down the line, the Dx was upgraded to ME or "ME/CFS". The paed consultant was quite comfortable with the use of the term "ME" and offered us a referral for a SPECT scan in a hospital some considerable distance away - not practical given that the patient could barely tolerate lying downstairs on the sofa, let alone travelling long distances by car. An MRI scan had already been carried out to rule out a brain tumour.

    But depending on whom we were seen by at regular outpatients appointments over the next three or four years, the term used on letters to GP and school varied between "ME", "CFS", "CFS/ME" and "ME/CFS" and sometimes at least two of these within the same letter.

    The majority of UK patients receive their diagnosis from medical professionals within the NHS. If CFS were to be placed in a different chapter of ICD, other than Chapter 6 to which it is currently indexed, my concern is that given the current lack of tests available within the NHS, that NHS GPs, NHS paediatric consultants and NHS consultants may "play safe" and plump for the "CFS" diagnosis and existing patients might find themselves being "downgraded" to "CFS" and that G93.3 (Benign) myalgic encephalomyelitis might become a "widow" diagnosis, that many NHS GPs and consultants will avoid.

    So until the science is sorted, however much I dislike the term "CFS", I consider it could hurt UK patients if the current close association with G93.3 ME were no longer there.

    The platform and architecture of ICD-11 is being presented as a publication not fixed in stone but because of the technology being used, will have increased capacity for revision in response to scientific progress. So I would prefer to see CFS remain indexed to G93.3 or formerly classified at G93.3, until we have the means by which patients can be accurately diagnosed.

    Jane Colby who runs the Young ME Sufferers Trust has called for the splitting of "CFS" and "ME". It is my understanding that Ms Colby has Ramsay diagnosed ME, herself. But many of the children whom her patient organisation represents won't have been given a diagnosis of "ME" or possibly not even "ME/CFS" - but "CFS" or "CFS/ME". What guarantees can Jane Colby give that if the ICD Revision Steering Group were to approve the splitting of CFS from ME and the placing of "CFS" in another Chapter outwith Neurology, that the children her organisation serves will retain an "ME" diagnosis and that new patients presenting with similar symptoms to her own, won't be shuffled into the "CFS" pen by medics unwilling to use the G93.3 Neurological chapter "ME" diagnosis.

    Just yesterday, I read an account on a Facebook patient org site of a very young child (under 7) with a diagnosis of CFS or CFS/ME who has developed a problem eating. The family has apparently been told by the "team" responsible for the child's medical care that this is a "control" thing - that the child no longer has "control" over her life, and is seeking to maintain some "control" via refusing food.

    I cannot tell you how angry this has made me.

    If that were my child, I would very much want to retain for the child a diagnosis of CFS/ME or ME/CFS or ME with a heritage of coding within the Neurology chapter of ICD, than have the child saddled with "CFS" and a "team" apparently keen to apply psychology to what might be symptomatic of a swallowing problem, or a gastric problem as a result of the child's illness.

    So as far as the UK goes, where many patients don't have the funds for opting out of the NHS system (when precious few ME specialists operate within the private sector) or for paying for extensive and expensive testing and treatments, it may be a case of "be careful what you wish for" until we have the science sorted.

    Suzy
  4. V99

    V99 *****

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    Suzy, you make a lot of sense. Right now the situation cannot be changed until the science is sorted. It is only when conducting biomedical research that they should separate out those with different symptoms and abnormalities.

    I was diagnosed with Post Viral Fatigue Syndrome, was told it was also called ME, and now have CFS written on my notes. This diagnosis came 4 years after I got sick from glandular fever. :rolleyes:
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Wow. I'm learning a lot about ME from your posts. I didn't realize it was different from American CFS. This throws a monkey wrench in my tidy theories of 'there's just ME (ME/CFS Canadian Criteria) and idiopathic fatigue, no third illness, 'CFS'. Where do I go to read more about how ME and American CFS are different?

    So what do you think the Canadian ME/CFS Criteria describe?- American CFS, but not ME?
  6. Gerwyn

    Gerwyn Guest

    CFS as diagnosed by the oxford criterea is idiopathic chonic fatigue diagnosed by idiotic criterea.A good number of patients in the UK are given the CFS label based on nothing but fatigue
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I know ME and British "CFS" (ie idiopathic CF) are different. It seemed to me Mithriel was saying ME was different from American CFS. I hope she wasn't. Mithriel?

    Unfortunately, because Sharpe et al. have intentionally maligned us by defining Oxford 'CFS" as idiopathic CF, we should be clear by specifying "American CFS" or "British CFS (ICF)" when we post.
  8. Dr. Yes

    Dr. Yes Shame on You

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    Hey Justin,

    Quite a bit of info on ME - history and definitions, etc - is available through the NAME-US site: http://www.name-us.org/

    Check out in particular the 1986 Ramsay case definition for ME, the Ramsay-Dowsett criteria (1990), and an article by Ramsay "Myalgic Encephalomyelitis: A Baffling Syndrome With a Tragic Aftermath", that will make you want to scream when you realize it was published back in '86.

    All three are on this page:


    http://www.name-us.org/DefintionsPages/DefRamsay.htm

  9. Bob

    Bob

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    Defining what we mean by the terms 'ME' and 'CFS'

    This is the most confusing discussion thread that I've been involved with so far...
    And also one of the most interesting and thought-provoking...

    I'd just like to point out that some of the messages on this thread don't make sense to me because it's not clear what people are basing their own definitions of CFS and ME on...

    It seems to me that we all have different ideas about what the terms ME and CFS stand for.

    Some of us have very fixed ideas about what ME and CFS stand for (including me, before I read through this thread)... but the terms 'ME' and 'CFS' seem to be very fluid descriptions of disease, depending on who we are, where we live, what our personal experience of illness is and when we became ill... etc.

    It seems to me that many of us have our own individual definitions of ME and CFS, based on various official definitions, various historical events, and various personal experiences.


    I just wanted to point this out to everyone because we can be clear in our own minds what we mean by 'CFS' and 'ME', but it seems that almost everyone has their own ideas about what ME and CFS stand for.

    From reading through this thread, it seems that most people in the USA get a CFS diagnosis because ME doesn't exist there; not in the minds of the doctors anyway... so we really confuse and upset people when we dismiss CFS as a lesser illness... or as a psychiatric illness.

    I think that it would be helpful if we all bare in mind that we all have a different understanding of what ME and CFS stand for when we talk about the differences.

    (Maybe we should start a new thread to discuss what 'ME' and 'CFS' means to us all individually?)


    In England, as far as I understand, for practical purposes, there is one condition and it is officially known as CFS/ME, as defined and diagnosed by the NICE guidelines, which I think uses the Fukuda definition (?)


    I just thought I'd point out to everyone that we all have individual ideas about what ME and CFS are, so maybe if we are talking about them as separate entities, it might be useful to define what we mean, otherwise it is highly confusing to everyone.

    People on this thread have been offended when it has been said that people with 'CFS' are 'just tired'... Many people don't understand what is meant by that because everyone in the USA is given a CFS diagnosis, no matter what their symptoms are...

    I think most of us probably have a diagnosis of 'CFS' unless we are lucky enough to be Canadian... or in the UK we have a CFS/ME diagnosis.

    I understand that not everyone diagnosed with ME/CFS has the same illness, and in my opinion, we should use a more specific diagnostic criteria for research purposes. And I understand that not everyone diagnosed with a fatiguing illness has a neuro-immune condition.
    But those of us with a CFS diagnosis may have ME as defined by the Canadian criteria.


    Bob
  10. Bob

    Bob

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    definition criteria, names and subsets

    Before I read this thread, I was convinced that we should diagnose ME using the Canadian criteria and that everyone else with fatigue should be diagnosed with CFS or just 'chronic fatigue'.
    But now I see that this might be a disaster for most of us...

    If the USA or England were to adopt the Canadian criteria, then I can imagine the following scenario:
    Doctors don't believe in ME, neither are they competent enough, or specialised enough, to diagnose ME using the Canadian guidelines, so we'd all be given an easier diagnosis of CFS, and we'd all have to fight to get an ME diagnosis, using our own sympathetic, specialised and expensive doctors. This would leave most people with CFS/ME with a CFS diagnosis, without the strength, resources or the right contacts to fight for an ME diagnosis. The psychiatrists would have a field day with the CFS scrapheap patients, and all of us dumped on the CFS scrapheap would be dismissed or abused more than ever before and forced to accept psychiatric treatments without the wider community pulling together to fight against them, as we do now. There may also be a fine line between getting a diagnosis with the Canadian criteria and the Fukuda definition... so many of us might have a CFS diagnosis forced onto us against our will, knowing that we should, in reality, have an ME diagnosis... nothing would be straight forward or easy for us.

    After reading through this thread, I now think that we should all stick together as a community, even if we have separate conditions or symptoms...
    we can still support each other if we understand and accept that there are differences in our symptoms and differences in the severity of symptoms for each of us within our community.

    So now I think that there should be only one name and one illness, but subdivided by types... The name 'ME' would be acceptable to me, but Tina has suggested another name acceptable to me: 'neuroendoimmune dysfunction'... I propose that the illness should be subdivided, by symptoms and neuro-immune signs, but mainly for research purposes...

    I suggest that ME Type I, ME Type II and ME Type III might be a better way forwards for our community...
    ME Type I could use the Canadian definition...
    ME Type II could use the existing UK/USA definition... and,
    ME Type III could use an even more relaxed definition such as Oxford. (This might even keep the psychiatrists happy about the proposed changes because Oxford can include purely psychiatric patients).

    Any thoughts?
  11. Dr. Yes

    Dr. Yes Shame on You

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    Hi Bob,

    I definitely would not recommend redefining ME to include the vaguer "CFS" definitions by the CDC or - worse - Oxford! ME would become a meaningless term, biomedically speaking, if that were done.

    However, you're thinking along the same lines I have been, especially since hearing the proposal by Dr. Joan Grobstein at last fall's CFSAC meeting. In her testimony (as a patient), she suggested that until a causal agent or mechanism(s) is/are found, ME-CFS cases should be defined by the known criteria they satisfy - both for clinical and research purposes.

    Based on that, it would make sense to break down the ME-CFS umbrella as follows: ME Ramsay, ME Canadian (and possibly CFS Canadian depending on the degree of neurological involvement), and CFS Fukuda.

    I suggest Oxford be thrown out altogether, or just call it idiopathic CF.... But I do like Grobstein's idea of retaining the current CDC Empirical Definition but renaming it "Reeves' Disease". :D
  12. Gerwyn

    Gerwyn Guest

    I think that we should just use myalgic encephalopathy no ambiguity patients either confprm to the canadian criterea or not.that has been put together by clinicians .the others to a greater or lesser extent by psychiatrists
  13. Orla

    Orla Senior Member

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    Splitting ME and CFS or not

    I would echo these concerns (below) over spitting ME and CFS, as it will cause problems in the real world for sick patients, where CFS is often the term often being used.

  14. Bob

    Bob

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    The existing official ME/CFS diagnosis presently uses a vague CFS definition, so ME is already a meaningless term (unless we specifically state that we are referring to ME using the Canadian criteria).
    My proposal would mean not having to reject vast swathes of CFS/ME patients onto the scrapheap, but it would be inclusive of everyone, using a meaningful and practical spectrum of definitions.

    This would be a massively significant step forwards in terms of research, and probably the best we can hope to get, but it doesn't address the concerns which I addressed in my previous posts, in terms of our community strength and cohesion.

    I agree that the psychiatric view of our illness has been our worst enemy over the years... but it is not the Oxford definition that is our enemy, it is the psychiatrists/psychologists who have hijacked our disease, for their own ends, who are our enemies. I think that using a spectrum of diagnostic criteria would not place us in greater danger, but would help distinguish our separate conditions, thus helping research efforts, not hindering them.

    I have concerns that many of us would not get a diagnosis at all based on the stricter Canadian criteria, purely because the doctors won't diagnose ME using a stricter diagnosis (due to incompetence and ignorance)...
    But if we were to get an ME Type II diagnosis, using the Fukuda definition for example, then at least it would be a step on the ladder to proper recognition... and we could then firm up our diagnosis to Type I at a later date.

    This would also mean that people who suffer from pure fatigue also get a label and aren't abandoned into some twilight world of quack psychological treatments.


    Well, I'm going to stop banging my head against a wall now, because all my ideas make no difference... they just give me a headache...

    We can't even get the Canadian criteria adopted in England, nor is XMRV recognised, and Wessely still has the ear of the government... GET is still pushed upon us, and the PACE trials will be out soon which the UK government will celebrate...

    So what hope have I got in hell to redefine CFS/ME as ME Type I, ME Type II and ME Type III ?!? (Answer = None).
  15. Bob

    Bob

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    Yes, I agree, this is an important practical concern that can't be overlooked.
  16. Orla

    Orla Senior Member

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    Bob, I also think with Dr Yes that Oxford needs to be thrown out. It cannot be considered a type of ME as fatigue on its own has nothing to do with ME/CFS as we have known it. It would not help anyone to be diagnosed with Oxford, as all it does is allow doctors (or the health service) to be sloppy and tag on a meaningless label to patients rather than invesitage properly. People will all sorts of conditions could get midiagnosed as Oxford ME/CFS (as sometimes happens now).

    If people have fatigue from stress then that should be the diagnosis, if people have fatigue from depression then depression should be the diagnosis, if people have fatigue from Thyroid problems then that should be the diagnosis and so on.

    I remember reading in a patient magazine years ago that a patient who had cancer was misdiagnosed with CFS on the basis that they had fatigue. This patient themselves noticed that their condition did not match that of people attending the local support group, as they just had fatigue and the "proper" ME/CFS patients had patterns of other symptoms.

    Oxford is not helpful clinically or research-wise and needs to be scapped. I wouldn't be a bit surprised if more cases come to light in the UK of major (potentially treatable) conditions being missed because of patients being given a label of CFS based on fatigue.

    Orla
  17. Bob

    Bob

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    You've expressed that very nicely Orla, and I think I agree with you.


    I actually had a friend who had a family member diagnosed with ME, and it turned out to be cancer. It seems that if you have ME then you can't get a diagnosis but if you have cancer then you can get an ME diagnosis
  18. Andrew

    Andrew Senior Member

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    The problem gets even worse. It is not simply a case of having a US CFS and a UK CFS. The two have been joined together by more than a common name. Our CDC web site points to UK studies as being about US CFS. Our very own patient advocacy group, the CAA, promoted Wessely (or was it White) as having new ideas relevant to US CFS. And nobody in a position of power is willing to step up and straighten this out.
  19. Mithriel

    Mithriel Senior Member

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    OK, I have been trying to sort out my thoughts.

    ME was originally defined as what was happening in epidemics throughout the 20th century.

    Later research showed it also occurred sporadically.

    It was most likely enteroviral, though there was controversy as to whether other viruses gave the same disease.

    Being made worse by exercise, variability of symptoms, muscle pain and neurological involvement were the defining characteristics.

    XMRV could be involved with what we know so far.

    CFS (US) was a bodged term invented by the CDC when they were asked to investigate an epidemic that was most likely another ME epidemic. It was not a very good description of the original patient's disease.

    Researchers concentrated on immune problems, POTS and OI which were never part of the definition but which most patients had. So we have the weird situation of the main symptoms of a disease not being part of the definition.

    Putting the emphasis on fatigue which is common to almost all diseases left the door open for the psyches to walk straight in and let them trivialise and sideline the disease. They also ignored all evidence for physical abnormalities and denied money to have proper large scale trials done.

    CFS (Oxford) is basically any fatigue they can't call another disease. This has widened over the years till they can have a conference on being "tired all the time". What they refer to is a million miles from the original epidemic ME. The CDC have now got an empiric definition which is also simply idiopathic fatigue.

    As we have come together in forums like this we have realised that people with ME have immune problems and people with proper CFS get worse with exercise.

    It is all the same disease

    But ..... we must be separated out from those with idiopathic fatigue. As was said they most likely have some other disease and should be investigated until it is found - this is what Byron Hyde tries to do. Many of them will have depression or some other psychological problem and that should be treated. They are entitled to that and there should be no stigma.

    But ... we will never get proper treatment for our disease, whatever you care to call it, until it can be teased out to a homogeneous population.

    I am not sure that ME will do it. There has been too much effort put into getting rid of it. Making it the "patient's preferred name for CFS" means that many who are told they have ME actually have idiopathic fatigue. In short, ME has too much baggage.

    Possibly we should be campaigning for ME and incline village CFS to be categorized as neuroimmune disease. It has the advantage that simply being tired is not enough to be included.

    In fact just push for neuroimmune disease without talking about a name change, let us all just be re diagnosed.

    I think the psyches are setting up something like this for XMRV, anyone positive will be peeled off from CFS until the only ones left will be psychological cases.

    Mithriel
  20. alphahusky

    alphahusky

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    Mithriel,

    This is essentially what I was trying to say, that someone upthread I think misunderstood. ME has been slandered. CFS in this country really does describe ME. I know that when I read the symptoms of the CCC or Byron Hyde's ME, that's what I have. Yes, it started with Mono. But yes, I was fairly functional at first, I just kept relapsing and relapsing and kept being told "Mono lingers" so I just figured I'd wake up one day and it would be gone, I had to live life in the meantime. I know that CFS is being widened by many to include the "just tired all the time," but that is not my case. Yes, I get exhaustion. Yes, in the beginning I got waves of it (at least then I could sleep). But I have so many more symptoms- cognitive, chronic nausea, violent headaches, 200 bright spots or punctate lesions in my brain. But in the US, to say you have ME, even to say full out Myalgic Encephalomyelitis, gets even doctors scratching their heads. They haven't a clue. CFS is a horrible name, I would have loved to use ME but it's pointless in the US, I prefer Neuroimmune something.

    It's making me a bit ticked off that people seem to want to slide us with CFS in the US- the only diagnosis we are likely to get- into a separate disease. Yes, I've met people with CFS who I do not think have it. They have depression, they have something else. Their brains are intact whereas mine is like swiss cheese. But I've met many with CFS who definitely meet the CCC. Fine, re-diagnose us, but please use the correct testing measures, please have a name that doesn't imply that the sickest of the sick are lazy. And as for OI, in this country I've seen that described as a person with the worst outcome. I know it's been hell in my life, but treatment for it did not cure me. Nothing has cured me or come close. I have my better periods if I can sleep, but I'm still in a fog, my brain is still barely functional until after 1pm, and even then...

    I guess what I mean is that CFS doesn't exist. Chronic Fatigue is part of many different diseases. Find out what they are. But ME does exist. However, in this country, you have to see like one of 3 doctors to get that diagnosis. My doctor is sure I'm quite ill and have XMRV, but he still calls it CFS. So separating them out in that way, without going through a further diagnostic workup, is just going to screw over those who have been diagnosed with CFS.

    I'm not taking a swipe at you, btw. Someone else upthread I think misunderstood me, then there were several posts that said what I was trying to say (like Dr. Yes). I think you've got it right.

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