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

Discussion in 'Action Alerts and Advocacy' started by Tulip, Apr 9, 2011.

  1. Tulip

    Tulip Guest

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    ...................................................................................................................

    For an explanation of what this thread is about, please go HERE

    The history of M.E. please go HERE
  2. WillowJ

    WillowJ Senior Member

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    I sometimes say the proper name of my condition is myalgic encephalomyelitis (ME), but here in <whatever country> it's usually called chronic fatigue syndrome (CFS), but that the problem with that name (CFS) is that it is also used to refer to many other conditions. People, even health care people, usually seem to understand this.

    (I don't usually go into the Definitional Confusion, but you could if you wanted, mention that the most commonly used definition is somewhat broad and nonspecific and does not select for ME, and some other definitions in use actually refer to what is called Chronic Fatigue [CF], or persistent fatigue which does not meet the criteria for CFS).

    The good part is that you can point out that my NIH (National Institutes of Health) has started to refer to the condition as ME/CFS and discuss defining the disease particularly.
  3. Mya Symons

    Mya Symons Mya Symons

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    You could provide them with the link to the Canadian criterea and they could see how different it is from the others. Unfortunately, I think that people respond to shorter letters better then longer more detailed letters. So if you get straight to the point and keep it short, they won't get bored.
  4. Boule de feu

    Boule de feu Senior Member

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    I do have a problem with this. It does bother me when I read comments that CFS is not ME.
    Here, in Canada, doctors tell us that we have CFS. They use the criterias of the Canadian consensus to make the diagnosis.

    I was told that I am a strong case of CFS. Would you say that I have CFS or ME?

    I have ALL of the symptoms found in the CC, except 3.

    I don't think the name matters. It's how doctors make the diagnosis that matters.
    I guess it would explain the differences found in the Fuduka, the CC, and the others. It would explain which method is more accurate in making a diagnosis of ME. It would also explain why some are pointing to an illness (ME) and some are too large and include all kinds of conditions.
  5. Boule de feu

    Boule de feu Senior Member

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    Good luck!
    Will you let us read your work once it is published?
    :)
  6. insearchof

    insearchof Senior Member

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    Hi Tulip

    I agree that it is important. It is, as you say, a seperate disease state, the knowledge of which has been lost to most doctors today. That fact and the mis information and understanding - as seen in comments in this thread - have meant that ME has become mistaken for CFS.

    Also, as you are probably aware -there may be many patients with ME who have been given a CFS diagnosis because it is so broad.

    Is it important to make the public aware. Yes. You can do this in a simple sentence - to simply high light the fact that they are not the same - highlighting the key point of distinction.

    I have done this before and written on the distinctions quite a few times. If you would like a few examples, I am happy to provide them or give you a hand.

    You have to work out how much information on the distinctions your audience needs. In order to work that out, you have to ask yourself: what do I want to achieve with this exercise? What is my objective here? What do I want my audience to take away from this?

    Start there - then the rest falls into place.

    ISO

    ps: If you want a hand just PM me
  7. taniaaust1

    taniaaust1 Senior Member

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    I used to be constantly trying to explain the differences to people but dont really do that any more as it does really confuse people.. (having CFS called ME and not just CFS in England really puts the spanner into making things a heap confusing.. they dont recognise real ME there due to their ME label on all CFS).

    I think you are better off just explaining that under a CFS label there are many different subgroups of sick people and that there needs to be some separation done of these groups hopefully soon, so that the label CFS isnt trying to cater for completely different illnesses which would have different treatments. (Then IF someone wants further info and asks.. you can explain more then).
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think just trying to explain cfs on its own would be hard enough as the general population think its either burn out and or depression, trying to explain both would be almost impossible in a short amount of time, they would need a biology lesson first.

    cheers!!!
  9. medfeb

    medfeb Senior Member

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    Tuliip and InSearchOf

    Can you help me understand the difference between ME and CFS.

    I understand that the term CFS can be a garbage term that collects all kinds of fatiguing illnesses and cases of depression, not just those CFS cases that would be included by the canadian criteria. Ignoring the depression and general fatiguing illness cases and just focusing on the cases that would meet the canadian criteria, can you explain what is the difference between ME and CFS. I have read a number of sources and threads and am still not sure I understand the difference. I'd really appreciate any explanation you can give
  10. Mij

    Mij Senior Member

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    You can make a point that ME does NOT require "fatigue" as a symptom and that a person can appear completely normal when unstressed emotional and physically. They have little or no difficulties doing short-term tasks but once endurance is applied the recovery time is lengthy and affects many systems in the body ie; CNS.
    taniaaust1 and Ocean like this.
  11. Tulip

    Tulip Guest

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    Thanks everyone,

    I am going to put it in, as it really needs to be done. ME will never get the attention it needs if we are everyone including us keeps calling it CFS.
  12. Nielk

    Nielk

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    As far as I know, the difference between ME and CFS is which country you live in.
    What is the difference?
  13. taniaaust1

    taniaaust1 Senior Member

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    ME has always been around and was a studied disease eg Melvin Ramsey was studying it from the 1955 outbreak... Dr Byron Hyde is a more recent ME expert. His site is at http://www.nightingale.ca/index.php?target=whatis
    CFS was something made up in in the 1980s by American government (CDC?) when a syndrome was formed by putting together various illnesses.

    ME is a neurological disease which can cause epidemics. CFS isnt necessarily neurological.
    ..............

    "Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.


    It can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934.


    M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Poliomyelitis (polio). Earlier names for M.E. were atypical multiple sclerosis and atypical polio.


    What defines M.E. is a specific type of acquired damage to the brain (the central nervous system).

    Myalgic Encephalomyelitis is an acutely acquired neurological disease initiated by a virus infection with multi system involvement which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions this is always damaged in M.E. (Hence the name 'Myalgic Encephalomyelitis').


    The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. This neurological damage has been confirmed in autopsies of M.E. patients.


    Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis. "

    the above quote is from a ME site http://www.ahummingbirdsguide.com/
    http://www.hfme.org/meoverview.htm is a good page to read if you want to understand ME from CFS better.
    http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf (is Bryon Ramseys ME definition)
    roxie60 likes this.
  14. Nielk

    Nielk

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    Thank you for your reply.
    I wonder how many of us fit into this very strictly adhered definition of ME as described by Dr. Hyde.

    I for example never had a spect scan done, therefore I don't know if there was injury to my CNS. I do have neurological symptoms but no confirmation that my CNS is damaged.
    He also mentions Raynaud's Phenomenon where there is a change in color of the skin of the extremities when cold. - I don't have that.
    He mentions there must be a vascular change with a decrease of blood volume. - never tested for that.
    He talks about the fact that there must be cardiac irregularity. I just had an appointment with my cardiologist and everything is fine.
    He said NO FATIGUE needs to be present, just the normal fatigue of being chronically sick.
    He also yalks about POTS. - I think I have that
    He talks about severe headaches. This I know I have.
    He also talks about neck pain which I don't have.
    He seems to say that you have to meet ALL his criteria to get a diagnosis of ME..

    Why do you say that CFS is a made up disease? Every disease was discovered at some point then defined and named.
    I agree that it's a crummy name but I would venture to say that very few of us can say that they meet ALL the criteria that Dr. Hyde describes.
    That leaves us with CFS.
    Is it that people want to disassociate to the name of CFS and it connotations that they want to form a new group "who are really sick" and call themselves ME?
    Do you think that the patients that Mr. Mikovitz studied were pure ME patients? She calls them CFS patients.
    I am gravely ill. Had sudden viral onset. I am exhausted most of the time. I have constant unbearable headaches. I have major sleep problems. I have many cognitive problems. I suffer from MCS. I suffer from POTS and PEM. According to the ME definition that I just read, I don not fit that "disease". I fit the "syndrome" of cfs that WAS MADE UP?
    I have a major viral load in my system - EBV, HHV6, CMV and many others. My specialist diagnosed me as having CFS but, you are saying that CFS does not exist?
    I don't get it.
  15. Boule de feu

    Boule de feu Senior Member

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    I find this practice of trying to dissociate the two diseases a bit dangerous.
    It might not be the right way to go about it.

    M.E. did get some of it's recognition because of the research that has been done on CFS.
    M.E. gets more coverage as a real illness since the American CFS has surfaced.
    We have more members united. We can do more as a group.

    Nielk mentioned some of the symptoms of ME.
    I have erythromelalgia which is the opposite of Raynaud's.
    I haven't been tested for blood volume (maybe it is written in my file and I don't remember)
    I believe my spect scan was normal.
    However, I suffered from extreme vertigo - It's well under control with medication.
    I know my CSN is damaged because of the neuropathy and many other symptoms I have.
    I had tachycardia at the beginning.
    Pots, severe migraines, severe neck pain. All of them.
    Vision problems.

    Major sore throat, swollen lymph nodes, low-grade fever.
    Dizziness.
    Severe nausea. Burning lungs.
    Earache, temporomandibular joint disorder.
    I could keep going.


    Do I have CFS or ME?
  16. Tulip

    Tulip Guest

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    Righto, I think I have worked out a good way of describing them both without freaking out those diagnosed with CFS, that really have ME - it has turned into a bit of a novel, but I decided in order to explain it I need to put a bit of ME history in.

    If anyone wants to volunteer to read my letter and tell me what you think, that would be great! (just PM me). This is not something i'll be asking non ME/CFS people as they wouldn't have a clue :cool:
  17. Boule de feu

    Boule de feu Senior Member

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    I would love to see it. I'm not sure I'll be of much help, though. =-)
  18. markmc20001

    markmc20001 Guest

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    Another term that can be used in place of CFS is CFIDS. CFIDS is also on the CDC page as a disease. No idea how is compares to CFS when it comes to diagnostic criteria, but at least it sounds more serious.
  19. Tulip

    Tulip Guest

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    I'm in Australia, it's not a term used here. But thanks for the suggestion anyway.

    Boule de feu I sent you a PM
  20. Boule de feu

    Boule de feu Senior Member

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    Got it! Did reply.
    Let me know when you need this.
    My best time (less cognitive problems) are very early in the morning.
    I could look at it tomorrow morning and send it right away.

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