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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. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Deconditioning is Not a Problem in ME.

    Orla, I totally agree. This is, at best, bizzare that Dr. Bateman says "not knowing how or not wanting to exercise is a human condition. It has nothing specific to this illness." As we discussed on another thread, it is very hard for the two of us, and many pwME, to not exercise.

    My cousin who has ME used to be an elite runner. She was physically unable to run for a long time. She has been doing short runs now for a few years because she feels she emotionally couldn't handle not running, even though it makes her physically sick. I worry that she has made her disease a lot worse with this practice.

    I had an arm cast in high school and I was totally amazed when it came off in six weeks that the muscle had just atrophied to nothing. In contrast, after 7 years of not exercising, my muscle mass has decreased only moderately. Deconditioning is not a factor worthy of attention in ME.
  2. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    ME not "CFS"

    I'm pretty sure those people who say "ME is not CFS" are from the UK and Australia where the Oxford Definition of "CFS", ie straight-up idiopathic chronic fatigue, is used. The US CDC Fukuda "CFS" definition defines what is called ME in the UK, not what is called "CFS" in the UK.

    I feel strongly that the term "CFS" is poison and should not be uttered without quotes. Like all other memes it is 'replicated' or strengthened every time someone writes or says it.

    The solution for us as patients is for every one of us never to say "CFS" again without quotes and always refer to the disease as XAND, ND, NID, NEID, ME, ME/CFIDS, ME ("CFS") or ME/"CFS". I prefer ME or ME/CFIDS (the latter to make clear we are talking about the disease also known as CFIDS or "CFS") since there is currently more name recognition than for the variations that don't include ME.

    Every time we write or say "CFS" we make it that much easier for CDC and Wessely et al. to insist on clinging on to "CFS" as the name since "everyone uses it." If every aware patient insists on calling the disease something, anything, other than "CFS", the name will change (to whatever, I don't really care) much, much more quickly.
    Would you like to see the name change in, say, a couple of years or in, say, eight years?

    "Be the change you want to see." (or something like that) -Gandhi
  3. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    I agree, it is essential to have a precise (and totally accurate) definition of ME. I do have to disagree with your proposal that we not get "bogged down" with labels like ME, CFS and CF. I think it is extremely important to pay attention to the nomenclature and 'keep it honest.' Playing word games is the chief weapon, other than outright lying, that our oppressors use against us.

    It's so great that Scotland has adopted the Canadian Definition of ME and called it 'ME.' However, it was a big mistake to basically mirror the UK in adopting "CFS" as a condition defined as nothing more than idiopathic chronic fatigue. They did this apparently so that people with idiopathic CF could get government support more easily. Nice thought, but they really should have just called ICF exactly that: "ICF."

    I agree with saying 'this pandemic has been ME all along.' But we can not conflate "CFS" with ICF because "CFS" is the name for this disease in the US and the entire body of scientific literature throughout the world (with a small minority of the academic papers now also using the term "ME/CFS", but never 'ME' on its own).

    This may sound like a fine point, but it is crucial: the term "CFS" must be abandoned, but also never equated with idiopathic chronic fatigue or the symptom of CF.
  4. rebecca1995

    rebecca1995 Apple, anyone?

    Northeastern US
    Sorry to hijack this thread, but I have to comment on this as well:

    Dr. Bateman wrote:

    It's simply not true that "all your muscles atrophy". Several years ago I had to have a doctor make a housecall because I was bedbound and leaving my home was an enormous undertaking that caused me to lose even more functioning. He wrote in his report that I had "no muscle atrophy" and normal range of motion in all my joints, including my ankle joints. I didn't need whatever that board is called that forces you to dorsi-flex your feet. (Keep in mind this was after years of being able to walk no farther than the bathroom and of doing almost no deliberate exercise.) In fact, my whole body seemed so normal that he wrote he didn't understand why I couldn't function at a higher level.

    I just don't buy deconditioning as a major problem in ME/CFS. Certainly, it's not the cause of our root pathology(-ies).

    Commenting on the first two-day exercise test study, Dr. Bell wrote in the 4/8 Lyndonville News:

    He notes that the authors conclude,
    In other words, our post-exertional decline is not caused by deconditoning.

    I also doubt the assertion that muscles "take ages to rebuild". As I posted on another thread, Dr. Bell told me in the '90s that people who recover regain their conditioning in one month.
  5. Angela Kennedy

    Angela Kennedy

    Essex, UK
    I'm pretty sure that human anatomical processes don't engender becoming pasta as well!

    Sorry - had to joke there. ; ) My point is that Bateman's use of language, as well as being patronising, is also problematic on many vital counts, and has been done for effect. All of which is not likely to help the ME/CFS patient trying to deal say, with cardio-vascular insuffiency, the BIG problem for the severely affected at least, it appears.
  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Dr Yes writes:

    Yes, Neurasthenia is coded at F48.0 within Chapter V (Mental and behavioural disorders) and Fibromyalgia has its own code (M79.7 under Other soft tissue disorders, not elsewhere classified in Chapter XIII: Diseases of the musculoskeletal system and connective tissue).

    Since ICD-10 includes no definitions or other content for PVFS and (Benign) myalgic encephalomyelitis in any of its three current volumes, there is no content to be carried forwards to start the process of revision of those terms for ICD-11 - there are no textual definitions, descriptive characteristics or any other content - just the terms and their code.

    ICD-10 does not specify whether, in indexing Chronic fatigue syndrome at G93.3, it views the term as a synonym to Postviral fatigue syndrome or to Benign myalgic encephalomyelitis. Nor does ICD-10 specify how it views the relationship between Postviral fatigue syndrome and Benign myalgic encephalomyelitis.

    Over the years, WHO classification experts have made various statements in relation to codings which are set out on this page:

    But none of these responses specifies ICD-10′s view of the relationship between Chronic fatigue syndrome, Postviral fatigue syndrome and Benign myalgic encephalomyelitis.

    So it is not known whether, in indexing Chronic fatigue syndrome to G93.3 in ICD-10 Volume 1, that the WHO views Chronic fatigue syndrome as

    a synonym to the label (title) of a category of ICD;
    a sub-entity to the disease in the title of a category
    or a “best coding guess”.

    So there is no relationship set out between the three terms in ICD-10, either, to carry forward to ICD-11.

    The starting point for the ICD-11 drafting process is the "Start-Up List" of categories which has been drafted by WHO/HQ to initiate the editing process. This list includes proposals received to revise the existing ICD as well as the input from ICD national modifications and textual definitions imported from affiliate classification publications.

    It's not apparent from the "External definitions"field in the demo i-CAT from what source this material has originated (other than UMLS).

    But I have, this morning, established that these three definitions are collated here, where they are labelled MHS, CSP and NCI as source.

    MHS (Military Health System or MeSH?)

    (where it says: "Annotation a clinical entity: do not confuse with "chronic fatigue" ( = FATIGUE (IM) + CHRONIC DISEASE (NIM)); DF: CFIDS")

    NCI = National Cancer Institute?
    CSP = ?

    Chronic Fatigue Syndrome (C0015674)

    Definition (MSH) A syndrome characterized by persistent or recurrent fatigue, diffuse musculoskeletal pain, sleep disturbances, and subjective cognitive impairment of 6 months duration or longer. Symptoms are not caused by ongoing exertion; are not relieved by rest; and result in a substantial reduction of previous levels of occupational, educational, social, or personal activities. Minor alterations of immune, neuroendocrine, and autonomic function may be associated with this syndrome. There is also considerable overlap between this condition and FIBROMYALGIA. (From Semin Neurol 1998;18(2):237-42; Ann Intern Med 1994 Dec 15;121(12): 953-9)

    Definition (CSP) distinctive syndrome characterized by chronic fatigue, mild fever, lymphadenopathy, headache, myalgia, arthralgia, depression, and memory loss; candidate etiologic agents include Epstein-Barr and other herpesviruses.

    Definition (NCI)
    A syndrome of unknown etiology. Chronic fatigue syndrome (CFS) is a clinical diagnosis characterized by an unexplained persistent or relapsing chronic fatigue that is of at least six months' duration, is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction of previous levels of occupational, educational, social, or personal activities. Common concurrent symptoms of at least six months duration include impairment of memory or concentration, diffuse pain, sore throat, tender lymph nodes, headaches of a new type, pattern, or severity, and nonrestorative sleep. The etiology of CFS may be viral or immunologic. Neurasthenia and fibromyalgia may represent related disorders. Also known as myalgic encephalomyelitis.

    Concepts Disease or Syndrome (T047)
    ICD9 780.71
    MSH D015673

    English Akureyri disease, Benign myalgic encephalomyelitis, CFIDS, CFS, CFS - Chronic fatigue syndrome, Chronic Fatigue and Immune Dysfunction Syndrome, CHRONIC FATIGUE DIS, Chronic Fatigue Disorder, Chronic Fatigue Disorders, Chronic Fatigue Fibromyalgia Syndrome, Chronic Fatigue Syndrome, Chronic Fatigue Syndromes, Chronic Fatigue-Fibromyalgia Syndrome, Chronic Fatigue-Fibromyalgia Syndromes, ENCEPH MYALGIC, Epidemic neuromyasthenia, Iceland disease, INFECT MONONUCLEOSIS LIKE SYNDROME CHRONIC, ME - Myalgic encephalomyelitis, MYALGIC ENCEPH, Myalgic encephalitis, Myalgic encephalomyelitis, Myalgic encephalomyelitis syndrome, Postviral Fatigue Syndrome, Postviral Fatigue Syndromes, PVFS - Postviral fatigue syndrome, ROYAL FREE DIS, Royal Free Disease, YUPPIE FLU

    Spanish encefalomielitis mialgica benigna, enfermedad de Akureyri, enfermedad de Islandia, neuromiastenia epidemica, sindrome de agotamiento cronico, sindrome de fatiga cronica, sindrome de fatiga postviral, sindrome de fatiga posviral

    Parent Concepts Virus Diseases (C0042769), Syndrome (C0039082), [D]Malaise and fatigue NOS (C0024528), Encephalomyelitis (C0014070), Myopathy (C0026848), Neuromuscular Diseases (C0027868), Immunologic Deficiency Syndromes (C0021051), Mental disorders (C0004936), Chronic Fatigue Syndrome (C0015674), Multisystem disorder (C0559758), Post-viral disorder (C1264605), Duplicate concept (C1274013)


    Derived from the NIH UMLS (Unified Medical Language System)


    So yes, Dr Yes, we shall need to closely scrutinise the Alpha Draft when it is issued in just a few week's time, and the progression of the work via the i-CAT if the draft is issued without all the fields being populated as a starting point.

    There is also a WHO ICD Revision maintained User Group for those interested in monitoring and discussing the progress of the revision and operation of the i-CAT and I have already registered for access.

  7. Adam


    Sheffield UK
  8. Bethany


    I got it in 1985 when we had practically just moved to Pensacola FL. I read that one outbreak was in Miami? Where can I get more information on that? And is Dr. Cheney's chart you mention posted anywhere we can see it Adam?
  9. Mithriel

    Mithriel Senior Member

    This could possible arise because the most official name for ME in the US was epidemic neurasthenia.

    It was also called atypical polio and polio B. One theory for the increase is that the niche left by polio now we have vaccinations has made Coxsackie B epidemics more likely.

    The polio epidemics were more prevalent in suburbs than slums and one theory is that increased cleanliness meant children were exposed to it at an older age so were more likely to get the complications that we think of as poliomyelitis. (Poliovirus causes a respiratory illness which most people at the time caught). Coxsackie B, which causes summer flu, may be the same.

    If a retrovirus is involved in reactivating viruses or making them chronic that would become more and more prevalent. Diseases all start somewhere. Cholera became an epidemic illness when a bacterium became infected with a virus which made it much more virulent. It is also possible that something which depresses the immune system will kill you quickly if you have more deadly infections. That could be why ME seems more common in first world countries.

    Another thing that may not be well known nowadays is that ME can start in a simple way, completely different from CFS. (How could something that happens in epidemics, like the Incline Village outbreak be defined by a six month wait? A major craziness amongst many...)

    I got ill 29th July 1968 after swimming in the sea at Blackpool during a burning hot summer. I NEVER missed any schooling, I worked Saturdays, I went dancing and hillwalking. Not only was I not deconditioned but I did not fulfil the main part of the definition of CFS - fatigue that interferes with life.

    I did have ME. I got severe pain and neurological symptoms like double vision, transient paralysis, speech problems, bulbar palsy. I couldn't stand and had vertigo, couldn't take heat or cold and sometimes became so confused I couldn't remember how to get home. I was noise and light sensitive and had bad sleep.

    I also came to a sudden stop when I reached my exercise limit. I could go from normal to unable to walk in the space of an eye blink. (I had to get carried out of a pub at five o' clock one afternoon, even though I didn't drink becasue alcohol made me feel bad.)

    Of course, I got a litle bit worse every time I over did it and every time I took a bad infection.

    I think many people do get ill after an infection but do not recognise it as "CFS" because they have not reached the level of fatigue the definition requires.

    It is possible to be very high functioning and still have ME. I wonder how many teenagers out there are like me.

  10. justinreilly

    justinreilly Senior Member

    NYC (& RI)

    The info I have is from Osler's Web. There is no chart in the book, just a mention of it.

    Go to Osler's Web's page on amazon; and click on the picture of the book; enter search terms:

    For mention of the chart: type in stuff like "cheney something happened 1970s or 70s"

    The only south florida outbreak i know of was on stock island in the keys where Defreitas investigated an outbreak of 'contagious MS' which turned out to be ME. search for "stock island".
  11. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Hi Everyone. I'm having trouble figuring out what is going on. Could someone give the short version. For example,

    I a few sentences, can someone tell me if there is something going on with the new ICD we need to act on. If so, what is it and where is it?
  12. strawberry

    strawberry Guest

    The only problem with this definition is that it exludes people with gradual onset disease. But what you describe is ME for me. Before I got severely and chronically sick 10 years ago I had PVFS lasting 4-6 months many times. It was always triggered by a serious virus like chicken pox, measles or influenza, never colds. This was not just fluey tiredness but neuroimmune disease with cognitive dysfunction, dysautonomia, neuropathic pain, flu-like malaise, PEM, alcohol intolerance, etc. The reason why I became so ill this time around is because the triggering influenza infection was REALLY severe. But the present illness is the same one I've been getting on and off for years.

    Could be organophosphate pesticides. They began to supercede organochlorines as pesticides in the 1960s. By the 70s the environment would have become more saturated. A study on the type of paraoxonase ME/CFS patients have should be done. An English farmer called Mark Purdey theorized that OPs were causing BSE/nvCJD as well and that epidemic also appeared in the 80s.
  13. Bob


    England (south coast)
    Good question Andrew... me too... this is such a complex and confusing thread... and I've read all of the messages on it (which wasn't easy!), because this is a subject I'm particularly interested in.

    What I think I've understood is that, sometime in the next few years (the schedule for implementation is October 2013), the USA will be adopting ICD-10 but creating its own domestic version of it: ICD-10-CM (the US clinical modification).
    There seems to be a proposal to create separate conditions of ME and CFS (and maybe also Postviral fatigue syndrome?)...
    I'm not sure if these are presently separate conditions in the existing ICD-10 and the USA are only proposing to make some minor modifications, or if they will be separated purely for the USA version ICD-10-CM.
    I can't work out what diagnostic criteria would be used for either ME or CFS.

    If anyone can explain it better than I have, or give more details, then I'd be very grateful.

    Thanku very much to Suzy for the following info:
    (But unfortunately I still can't work out the answers to the questions I've raised above, without doing a lot of heavy research.)

  14. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    I have gradual onset ME so I've wondered what the difference is. Maybe a host response? Or a different sub-type with different cause. I think in addition to XMRV, the DeFreitas retrovirus and other retroviruses and retrovirus-like viruses possibly working in combination may cause the different onsets. Like I said retrovirus causation theoretically fits so perfectly with the clinical and lab picture of ME plus we've already got several retroviruses and retrovirus-like viruses linked to ME.

    Don't know much about the pesticides. There is a good case for them too?
  15. Dolphin

    Dolphin Senior Member

    I was fairly high functioning for the first four years of ill e.g. full-time school and continued with good results but had to make sacrifices. Initially when I got diagnosed, I thought I had a gradual onset but then I remember going on an adventure trip with my school when I had a cold/flu (don't ask!) and feeling miserable on the trip and having to give up sports gradually after this.

    I wasn't able for dancing (unlike Mithriel) or sports because my muscles felt sore the day after. And I wanted to get back to playing sport and thought I was straining muscles that weren't fully healed. The physios mentioned to me that women are more flexible than men so perhaps the tightness might have caused less problems for women who had more flexibility to start with (i.e. if I was more flexible, I might have noticed a bit less?). I don't think I could ever touch my toes from standing even before the illness (hard to recall now) - I certainly wasn't that flexible.

    I did have drops in cognitive functioning. But it was possibly more noticeable for me as for example in maths, I was very good before the illness and basically didn't make clerical mistakes while I started to make clerical mistakes. I still managed to get 6th in the Irish National Maths Contest two years into my illness (but didn't come in the top 20 for the Maths Olympiad that selected the team for the international olympiad)
  16. strawberry

    strawberry Guest

    I think you are right about retroviruses, especially with the attack and slow decline you describe. There is also the fact that Peptide T has a theraputic effect on ME/CFS. I have wondered if OPs contributed to the spike because they damage the immune system and cause herpes reactivation and depress NK cells. Perhaps people who cannot clear them become primed for very severe and chronic PVFS. There was something I read that qouted a Susan Levine article: “One of the most exciting has been (the) report of aberrant cytotoxic activity among (ME)CFS subjects who demonstrate a differential expression of at least 35 gene sequences compared to matched normal controls. The identity of the protein products of these genes suggests a link to organophosphate exposure”.
  17. Dr. Yes

    Dr. Yes Shame on You


    Hi Andrew and Bob,

    Before I get to the upshot, I want to spell out the basic situation first for those who haven't read much of this stuff yet; then I will get to what this means for Americans (Canadians aren't Americans :D). We won't know for another couple weeks about the ICD version the UK, etc will be using.

    The Present
    Most Nations: The current version of the WHO's ICD, being used by most nations including the UK, is the ICD-10, which has ME and postviral fatigue syndrome listed as neurological diseases in section G93.3, and CFS listed in the index (where it tells you to "see G93.3")

    US: The US, being old-fashioned and cranky, has been sticking with the older ICD-9, which does not list ME anywhere, and only has CFS under a section for "Symptoms, Signs, and Ill-Defined Conditions".

    The Future
    Most Nations: The ICD-11 is, naturally, the next version of the ICD which most nations, including the UK, will adopt. First draft should be out within a couple weeks.

    : Again, being old-fashioned and cranky, instead of just moving on to the ICD-11, the US will 'move on' to a modified version of today's ICD-10. This of course will be called the ICD-10CM.

    So, for the Americans...

    The Good news: The new American ICD-10CM, just like the normal ICD-10, will recognize ME as a neurological disease (under G93.3 - "other diseases of the brain").

    The BAD news
    : One of its 'modifications' happens to be about CFS (surprise, surprise!). Unlike the ICD-10, which has CFS in an index which refers you back to ME or postviral fatigue syndrome, the American version will:

    (1) not mention "chronic fatigue syndrome" anywhere without the label "NOS" ("not otherwise specified") attached,

    (2) specifically exclude "Chronic Fatigue Syndrome NOS" from G93.3, therefore saying it is not to be classified as a neurological disease,

    (3) again put "Chronic Fatigue Syndrome NOS" in a category NOT for disease, but for "symptoms, signs, abnormal clinical and laboratory findings, not elsewhere classified". In other words, the wastebasket. Oh, and:

    (4) add that "postviral fatigue syndrome" (the neurological disease) is specifically excluded from being considered as "chronic fatigue syndrome NOS"!

    What does this mean (for Americans)?

    Well, for starters it means that there is no official code anywhere in the upcoming American ICD version for plain old Chronic Fatigue Syndrome. The closest thing is "Chronic Fatigue Syndrome NOS", and that means, as I see it, that they are defining it more vaguely than ever, as an exclusionary diagnosis with no clear reality of its own.

    It also means that whatever CFS NOS means, it does NOT mean postviral fatigue syndrome or ME.

    And that the American ICD STILL won't consider CFS a neurological, or indeed ANY, disease entity. It will continue to define it as a vague collection of symptoms or findings, only now it will be even further removed from the possibility of being mistaken for a "real disease".

    What can we do about it?

    I don't know what input we as individuals can have into the ICD creation process, but perhaps groups like the IACFS/ME, CFSAC and CAA might -- if they have the will to put up a fight (even making noise is better than nothing). Their main opponents, I am guessing, will be in the CDC and perhaps at the top of the NIH.

    We have two alternatives, as I see it:

    - To push for the inclusion of CFS in G93.3 (without the "NOS"). This is already the situation in the upcoming Canadian ICD version.

    - To make sure that there is a set of guidelines for diagnosing ME (coming from the CDC, I think) such that most CFS patients can get an ME diagnosis. (This would be an interesting way to get rid of the CFS label...) The Canadian criteria might work here... all patients who do not fulfill the Canadian criteria would then get classified as CFS NOS, though the postviral exclusion should be removed even for that. But due to the mentality of the CDC on these issues I think the first option would be a few orders of magnitude easier... plus this still probably wouldn't be fair enough to those who satisfy only the Fukuda criteria.
  18. Gerwyn

    Gerwyn Guest

    The simplest answer is to abandon the CFS label altogether
  19. Dr. Yes

    Dr. Yes Shame on You

    ME and CFS have never really been regarded as the same condition by the WHO. The planned Canadian modification will group them together as "other diseases of the brain", but still not as the same disease.

    The WHO does not set out diagnostic criteria, to my knowledge. It is more just a classification and coding system to allow a certain degree of international standardization. It is not clear what case definitions, if any in particular, they are using. They do seem to try to go with a certain amount of consensus (don't know whose) in the initial classification of diseases and then to be fairly conservative over time. So for diagnostic criteria of ME and CFS, we're stuck with whatever we have, or don't have, already...
  20. Dr. Yes

    Dr. Yes Shame on You

    Hey G,

    Simple for you or me, but apparently not for the CDC.. who created the mess in the first place of course. It also depends on how one defines ME, i.e. according to Ramsay or Hyde, etc. I don't think it can be left out of the ICD, though.. not without major institutional policy change in the US first.

    If CFS were left out of the ICD entirely, then there would also be the problem of the real world diagnosis in the US in particular. We can't seem to get doctors, medical schools, medical associations, or government associations (like the CDC) to acknowledge that there IS a disease called ME, at least not as you and I know it. The problem becomes a political tangle.. they won't acknowledge ME, the WHO would but would not acknowledge CFS, so all the ME patients who are described as having CFS in the US would be left with no real diagnosis. Until the CDC in particular correctly recognizes ME and commits itself to a non-psychiatric investigation of non-ME "CFS", I don't think we can entirely do away with the CFS label in the US (either in general or just from ICD coding), if only to protect most of us from the screwed up system already in place.

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