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Cfids/cfs/me

Discussion in 'Lifestyle Management' started by MEG, Sep 22, 2009.

  1. MEG

    MEG Senior Member

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    I have an aquaintance who says he has CFS, and not CFIDS. He is also telling me I have CFS and not CFIDS. He explains that CFS is fatigue due to poor sleep with Fibromyalgia pain. He goes on to say that CFIDS involves the immune system, and CFS is simply from poor sleep. My stance, CFIDS/CFS are the same illness. Am I missing something? I am an RN who has extensively researched my illness. I can't get my point across to this person. I would appreciate help!
     
  2. Jody

    Jody Senior Member

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    Hi Marian,

    Welcome to the forums.

    That is the million dollar question -- or one of the many, I guess.

    I personally think he's wrong and you're right but ... there is such confusion and lack of consensus about all this that you could get a different answer from anyone you ask.

    I personally call what I have CFS mostly I guess because that's the name I got used to hearing early on. But really, I am not that interested in the name, I just need something to call it, rather than go through my list of symptoms every time I talk about it. :)

    And then each of us is so different in our symptoms etc. So I just stay focused on my own ... dysfunctions and doing what I can to bring them in line. Name or no name.

    Just my two cents. The next person who comes along will probably have a completely different point of view.(Which in a way is my point. :))
     
  3. MEG

    MEG Senior Member

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    Cfs/cfids/me

    Jody,
    You bring up a very good point. Whatever name we use, when talking to people we always need to list the symptoms, or in some way describe the disease. It is very frustrating. I don't feel people really understand.

    On the name...I still say CFS/CFIDS/ME are, as of now, the same disease. CFS just being shorter, easier to say than CFIDS. The CFIDS Association of America uses CFS/CFIDS interchangeably. So does the NIH.

    My aquaintance just happens to be driving me crazy with emails negating my disease...and he has FM and I would think he would understand. Some people think they know everything. I am here to learn.

    So glad I found this forum....from someone on the CFIDS FB forum! Word is getting around....great
     
  4. Finch

    Finch Down With the Sickness

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    Hi Marian

    I'm glad you found your way here. It's so helpful to have these people to talk to who actually understand! There are so many people in our everyday lives who simply do not. CFIDS was a name created to try to take some of the stigma out of the name chronic fatigue syndrome by adding immune dysfunction to the name. I doubt it's recognized as an actual diagnosis in the medical community, but then again, if the NIH is using it, it may be.

    That being said, CFS definitely IS NOT from lack of sleep due to fibromyalgia. I've had CFS for 19 years, and fibromyalgia type pain didn't even enter my picture until several years into it. I still don't believe I have fibromyalgia, although one physiatrist I saw did test the trigger points and said I "almost" had it. I guess I was short a trigger point or two! So silly.

    I'm with Jody. It doesn't really matter what it's called. There's simply not an adequate name to describe it yet. CFS, unfortunately, is what we have for now. At least when you use it, some people have a bit of an idea what you mean. Hopefully one day that name can be replaced by something much more descriptive and appropriate. I often use ME/CFS when I'm talking in forums, but not with friends or relatives, because they'd have no idea what I'm talking about. ME just isn't talked about in the US yet.

    So, as far as I'm concerned, you can call it CFIDS if you want, but CFS and CFIDS are the same thing, and CFS is not simply lack of sleep! When I was first ill with CFS, I slept 12 to 16 hours at a time with naps in between. I don't think I was lacking any sleep!

    It sounds as though your friend feels rather superior with his fibromyalgia diagnosis, maybe? Whatever it is, he certainly should know better than to belittle your illness!

    I think you live in a very beautiful area of the country, by the way!

    Stick around. You'll find some good advice here and lots of people to just talk to!
     
  5. MEG

    MEG Senior Member

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    Thank you so much. I have finally found a place to get the best information all the while feeling nurtured.
     
  6. Wayne

    Wayne Senior Member

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    CFS or CFIDS

    Hi Marian,

    I agree with you; CFIDS and CFS are two different names for the same syndrome. Why your friend insists on making differentiations is quite baffling. Personally, I tend to stay away from people who baffle me. :)

    I read an account once of a woman whose teenage daughter had CFIDS. After discovering that people couldn't understand the severity of her daughter's illness by referring to it as chronic fatigue syndrome (CFS), she changed her approach of describing it.

    She would initially start out by saying her daughter had a serious immune system disorder. She would then go on to describe how her daughter doesn't have the ability to keep various viruses, pathogens, etc. in a dormant state, so she is always battling a flu-like illness. I think she would then tie it into CFIDS or CFS, can't really remember.

    The main point however was that virtually everybody seemed to understand an immune system dysfunction that leaves a person feeling sick all the time. It's something I keep in mind when I very occasionally attempt to explain a "bit" about my health difficulties. Simple but pretty understandable.

    BTW, welcome to the board. :)

    Wayne
     
  7. dannybex

    dannybex Senior Member

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    Hi Marian

    It sounds like your friend feels the need to BE right, so I'd just let him think he is. No point in draining your "energy" by arguing about it.

    That being said, I agree with everyone else here. You're right, he's wrong.
     
  8. MEG

    MEG Senior Member

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    Cfs/cfids/me

    Thank you to all who have responded and supported me. I feel blessed to be part of this on-line community, as this disease has left me so isolated. I don't think "he" will be my friend much longer, as I don't have the energy to fight over such a trivial issue. You are all correct in that it doesn't matter what we call our illness, what matters is that we support each other and fight for research to find a cure. I plan to spend a lot of time here, helping to support others as you have supported me. Thank you again.
     
  9. Victoria

    Victoria Senior Member

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    Hi Marion,

    Yes, I agree with others, especially Jody.

    I have been diagnosed with Fibromyalgia, but I can relate to so many people here with "CFS" (I hardly dare type that abbreviation, but it's quicker). I also have many other health issues, especially spinal/disc disease & chronic inflammation (which waxes & wanes).

    I couldn't care less now (what anyone thinks I have), I am more concerned with my problems and not the misguided, ill-informed, un-educated, insensitive, and down-right rude people who think they know more about you & your disease.

    I say distance yourself from these people, no matter how well-intentioned they think they are. I sorry to say, this may include good friends.

    When you have any ICI (invisible chronic illness) of any kind, you need supportive, caring people around you. You need people who understand & appreciate where you are on any given day. They need to be sensitive to your self preservation tactics. They need to be accommodating to your limitations.

    Eg I have invited a very dear old friend for lunch next Sunday. I haven't seen her (in person) for a few years. I said please come around midday, I'll throw a chicken in the oven with some steamed broccoli. I haven't the energy to do the whole roast vegetables with all the trimmings at the moment. Could she please bring some dessert - could she bring berries (easy). Could she please limit her visit to 3 hours (max).

    I nearly feel asleep on a friend about 3 weeks ago when she visited - I was exhausted that Saturday.

    So, feel free to communicate your needs. If you can't cope with visitors for more than an hour, feel comfortable about expressing this.

    I also warn people to NOT wear any perfume, strong deodorant or whatever.

    My hearing is slowly deteriorating and there are some days when I have trouble concentrating, so I (not often, I admit) ask them to speak up & not too fast. I offer them the couch or to sit with me at the dining room table, as my lumbar disc pain is better with a straight hard backed chair. I do not drink alcohol (maybe 6-7 glasses a year), any kind of soft drink with artificial sweetener or even fresh fruit juice. If they want anything besides my herbal tea, Italian coffee, English tea, they have to bring it themselves.

    So my very best advice to anyone is look after number one - ie you. Of course I'm single & live on my own, so I'm able to do exactly what I wish. I try to interact with my lovely special neighbour (ex nurse) on her level sometimes & accept a glass of wine, but I am careful not to go to far outside my limitations, otherwise the next day I am much worse - pain or just too fatigued.

    Pacing & leaning what works for you is the best self care. As an RN who has done much research, I imagine you will know this already.

    I hope you enjoy being on this Forum. Great members & more importantly, people who genuinely care.

    Victoria

    PS Real, genuine, caring friends will be more that happy to comply to your wishes.
     
  10. kolowesi

    kolowesi Senior Member

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    it's just a name

    Hi, Marian,

    Great answers on here, I'm glad you brought this up.

    Thanks to you, I've decided to stop agonizing over this. Not just the name, not just the doctors who don't believe it's real, but the people who belittle me.

    Why have I wasted so much energy over this?? I'm really glad you spoke up.

    Kelly

    PS I would always say CFIDS (though I was diagnosed by one doc with both CFS and CFIDS!) because it sounded more serious. Now I think I won't say anything at all, so that I can learn it doesn't matter. Wish me luck.

    PPS Whatever your "friend" is trying to prove, he reminds me of some posters on other forums. When we have to be right and make others wrong, it's not about the discussion at hand.
     
  11. Victoria

    Victoria Senior Member

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    Melbourne, Australia
    Well said,

    I must remember your sentence for the future.......

    Victoria
     
  12. JanisB

    JanisB Senior Member

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    Meaning of a name

    Hi Marian,
    While it's true that the name itself doesn't change our symptoms, the difference between your friends idea that CFS is not primarily a dysfunction of the immune system but that all the complications are due to a lack of sleep, creates a misleading picture.

    If you look over the history of research, it is true that sleep deprivation studies can produce immune dysfunction, pain, and neuro-endocrine disruptions. But as soon as the subjects begin to get sleep, their symptoms abate. Not so in CFS/CFIDS, now which most of us call ME-CFS because we find the Canadian definition more accurate that the US' CDC definition of the illness. Even people who sleep 8 - 10 hours a night still have these immune, neuro-endocrine, and pain dysfunctions.

    If you go to John Herd's blog and read his biography, he cites a study done in 1987 which showed that immune cells were disordered in this illness. There have been many subsequent studies showing poor NK cell function, elevated TNF alpha, etc.

    You can also refer your friend to Martin Pall's book, Explaining Unexplained Illnesses, which is replete with documentation of physiological abnormalities in CFS that can't be explained by poor sleep.
     
  13. Julia Rachel

    Julia Rachel

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    Hi There:
    I think CFS stands for Chronic Fatigue Syndrome and the diagnostic criteria are met by 6 definable symptoms. CFIDS stands for Chronic Fatigue Immune Deficiency Syndrome and meets the 6 symptomatic criteria for diagnosisof CFS but also has a viral component, known as viral reactivation envolving the viruses HHV-6A, EBV and possibly CMV. As well as Viral reactivation, CFIDS patients are also known to have one or more piggyback co-infections such as Micoplasma P., Chlamydia P., different variants of Lyme and unusual bacterial infections as well as a plethora of unique infections. It is thought that about 60-75% of all CFS patients have the CFIDS, or are in the viral reactivation subset. It is important to get treated if you have the infections or viruses as they do lead to more serious disease in time. I hope this helps. Best, Julia Rachel. VLG on Valcyte Blog.
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    theoretically if some is positive for xmrv then they dont have cfs or cfids, they have xmrv, its all a play on words, we can just add in ME and confuse the situation more, lol.
     
  15. gregf

    gregf Senior Member

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    Hi MEG,

    I also think you are right, our illness is made worse by lack of sleep but that is not the cause.

    Our illness will allmost certainly turn out to be caused by a retrovirus, either XMRV, MLV etc.
    Our illness has more in common with HIV/AIDS or to be more precise Feline Leukemia Virus disease.

    The name is actually very important. The name CFS was made up deliberatley to suggest to
    the medical community that we have a somatic or psychiatric illness. There have been thousands
    of papers published to support that, so using the name CFS actually hurts our cause greatly.

    Most activist patients outside the US are using the name ME in converstaion and ME/CFS on
    legal occaisions. The name CFS is being used now in the XMRV research purely to ensure
    the CDC can not escape legal justice. On those occaisions it is best to say ME/CFS.
     
  16. kat0465

    kat0465 Senior Member

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    for what it's worth Meg, my dr. who really specializes in Aids but dose see a ton of cfs/me/cfids patients. also think they are one and the same disease.
    we all just present it a little different, i guess like most diseases, some people will have the whole shooting match of symproms, while others will not have the same exact line up.


    i have been sick for 20 years and when i first started running from dr to dr, my ebv, hhv6 titers were all in the accptable range, 10 years later they started climbing and are in the chronic stage, but just recently fell back down again.

    it's safe to say our Body changes and deals with things differently every day. if hte Laws that be would just come together and put ME, CFS, CFIDS into one and call it something respectable, we might get the help we need.
     
  17. caledonia

    caledonia

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    FM + lack of sleep = FM + a sleep disorder, not CFS!

    It sounds like your friend might be confusing CFS with CF (ordinary run of the mill Chronic Fatigue). It wouldn't be the first time that somebody was confused about that. You can thank the CDC.

    The illness was originally called ME. After the CDC was brought in to investigate the Incline Village epidemic in the 80's, it was renamed CFS in the US. The name carries a lot of stigma, so the term CFIDS was made up to bring it more legitimacy (as in The CFIDS Association).

    I have never heard of a differentiation between CFS and CFIDS, with CFIDS having a viral component. As far as I know, they are one and the same, and used interchangeably.

    Just recently, the CFSAC (I think) voted to start using the term ME/CFS. The WPI is also using ME/CFS in it's research papers. That seems to be the wave of the future, so I have been using that too, along with many other patients.

    If you could prove that you were carrying XMRV and that XMRV was causing your symptoms, and especially if anti-retrovirals relieved your symptoms, then you could say that you had XMRV. In other words, it's a little premature to say that you "have" XMRV, because XMRV has not officially been proven to cause any disease yet. But hopefully that day will be coming soon.

    You could of course say that you carry the XMRV virus.
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    viral damage to our hypothalamus can cause sleep disorders or inflammatory cytokines can give people that tired but wired feeling and this lack of quality sleep worsens every symptom including fatigue and pain. Even though treating sleep disorders with medications doesnt cure cfs, i definately feel it helps alot and makes me alot more functional.
    If u feel ill/tired with post exertional malaise and its been ongoing since a sudden infection , theres a good chance u have cfs/cfids/me etc alot of the other symptoms can be very individual.

    cheers!!!
     

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