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Don't lump CFS and ME together

Posted , 17 users are following.

ChloeCybil
ChloeCybil

As I read so many posts on here, I see most people lump CFS and ME together and they are not the same disease. They should be referred to separately as many of the symtoms of ME are not the symtoms of CFS. You can't die from CFS but ME can be a debilatating disease that can get progressively worse and CAN lead to death. So whichever one you are suffering from, what helps you feel better with CFS most likely will not help you feel better with ME. I am definitely on the upswing with my CFS. I walked almost 2 miles this morning and am feeling better every day. I think I am on the road to a total remission again. ME patients really have to monitor their activity levels so as not to cause themselves to go backwards and aggravate their condition. Don't lump these conditions together because they are totally different. Think of them separately and they need to be treated separately. Look up the differences on the internet.....a vast supply of knowledge. Have a good week-end everyone!

2 likes, 72 replies

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  • jacquie14742
    jacquie14742 ChloeCybil

    Posted

    I have just seen a CFS specialist at John Radcliffe hospital, who used CFS all the time and didnt mention reference to ME...How do you know though which you have? I have the debilitating fatigue, but also sore throat / glands up...heart problems, endocrine probs, vision probs, twitches, tremors...all of it! Does this mean I will die? My GP said they were the same and other specialists I have seen said they were the same...What are we supposed to do if the specialists can't even get it right...

    Even on the NHS website http://www.nhs.uk/conditions/chronic-fatigue-syndrome/pages/introduction.aspx they have said they are the same!!

  • sunshinemb
    sunshinemb ChloeCybil

    Posted

    Hi ChloeCybil

    I agree with you entirely they are totally different!

    I have severe ME and have never had a day free of symptoms in 12years

    and the list is very long and never had a period of remission ever!

    Thankyou for taking the time to explain the differences.  

    I do hope you are on the road to a full remission that would be fantastic

    for you!

    Have an excellent and healthy weekend!

     

  • jackie00198
    jackie00198 ChloeCybil

    Posted

    I'm apologizing in advance for what may be my controversial post. There is a lot of controversy about whether CFS and ME are the same disease. Here in the U.S., it's been apparently been decided that they're the same illness, thus the designation CFS/ME. Over the years here, the CFS community has been very angered by people almost making fun of the name "Chronic Fatigue Syndrome." It makes it sound like we're lying on a chaise eating bonbons. CFS was even called the "yuppie flu" here for many years. So in response to this minimizing of the severity of the illness, it was decided to combine the CFS with the ME used in so many other countries, which gives the illness the serious-sounding name it deserves.I checked out several websites, which mirrored the confusion. In one, for instance, it says: 

    "It should be explained that there are a number of different names for what is an illness of uncertain cause affecting many thousands of people. Currently it is estimated that some 250,000 people in Britain are affected by this illness.

    Myalgic Encephalopathy or “ME” (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis)

    Chronic Fatigue Syndrome or “CFS”

    Post-Viral Fatigue Syndrome or “PVFS”

    Chronic Fatigue Immune Dysfunction Syndrome or “CFIDS”

    I hope I haven't offended anyone here by posting this, but I couldn't resist. I've had so many years of me telling people I have chronic fatigue syndrome, and people responding with, "Oh, I get tired, too.' That's very discouraging to hear.

    • sunshinemb
      sunshinemb jackie00198

      Posted

      Hi Jackie

      Your post is in no way offensive, infact it is very informative!

      The more information and understanding of how this condition manifests itself or how it is perceived by professionals, patients, carers, the better

      in my opinion!

      My NHS GP here in the UK refers and writes Chronic Fatigue Syndrome

      and makes no mention of ME anymore, even though that was the diagnosis I was given in 2006.

      My private Specialist uses the term CFS/ME,

      Unfortunately any of the different names given to this illness of uncertain cause do bring with them a sort of stigma akin to tiredness!

      In fact I no longer tell people I have ME because it is exhausting and frustrating trying to explain to healthy and fit person the limitations of this awful condition.

      The problem is that there is very little funding being given to bio research into CFS/ME and here in lies the problem....No research no answers!

       

    • ChloeCybil
      ChloeCybil jackie00198

      Posted

      I understand only too well of trying to explain that the fatigue you feel with CFS is not even close to the same feeling of just being tired. I try to explain it, to those who want to understand, that the fatigue is like a bone crushing fatigue that no amount of sleep can make you feel rested.
    • jackie00198
      jackie00198 sunshinemb

      Posted

      Sunshine:

      You hit the nail on the head regarding lack of research. I was hoping there was more in the U.K. One reason for the name change here is that it was found that "Chronic Fatigue Syndrome" did not generate research because researchers did not take it seriously. In fact, in one of our government agencies, maybe the National Institutes of Health, money that was earmarked for CFS research was diverted to another illness. There was a huge scandal, and the money was finally returned. So what may sound like trivial arguing over something (name of an illness) actually has huge consequences. I recently contributed money into a crowd-sourced study of CFS/ME and the gut bacteria that may contribute to it. I almost think there has to be this kind of grassroots support for research by the CFS/ME community. Because it's very disheartening to see how little research has been done by the government and others in the past. I think of how the gay community came together and was so effective in finding drugs to deal with AIDS.

    • jackie00198
      jackie00198 ChloeCybil

      Posted

      I've used exactly those words sometimes: "bone-crushing fatigue." It's very hard for others to imagine, just as I never could have imagined this until I got it.
    • sunshinemb
      sunshinemb jackie00198

      Posted

      Hi Jackie

      This is very interesting and the points you are making are spot on!

      I have had almost the exact discussion with various people about research, naming the illness and relating the situation to the Aids problem. Also how many years ago Multiple Sclerosis was referred to as "Hysteria"!

      M.E. was also referred to many years ago as "Atypical Polio" because it

      had all the symptoms but not the paralysis associated with Polio!

      There is very little funding for bio medical research in the UK but millions

      has been ploughed into CBT and self management of the condition because some health professionals were able to convince the NHS that this illness has a psychiatric basis and that has put a stop to virtually all biomedical research in the UK.

      there are major constraints and limitations on how NHS GP's are allowed to treat patients...antidepressants and painkillers!

      I cannot see this changing anytime soon and seriously ill patients are left isolated and ignored!

       

    • alison44235
      alison44235 jackie00198

      Posted

      When people say 'I get tired to' it is so so anoying and frustrating. It makes me so angry. If we all had a broken legs they would understad, so why can't they understand our desparate condition. Is the only way out unthinkable.

      Alison

    • jackie00198
      jackie00198 sunshinemb

      Posted

      Wow! This is very disheartening to hear. I had always assumed that the  U.K. was in the forefront of CFS/ME research. Whenever I read negative press about our illness here in the U.S., I would think, "Well, at least they're getting it right in the U.K." It's unbelievable to me that, given that this is an illness that is worldwide, so little has been done, and there is so much misinformation. As for CBT, well, sure that can help as a coping mechanism, just as it would with any illness, including cancer. But it's not any more of a basic treatment than it would be for any other illness. What if, when a person got cancer, they were told to just see a therapist for CBT, and learn to deal with it. No radiation. No chemo. Again, I think, more and more, that we in the community have to do something to get the word out, because the so-called professionals are doing zip! Of course, the difficulty is that we in the community have so little energy to do anything.
    • henry05584
      henry05584 jackie00198

      Posted

      Hi Jackie00198. I am not sure what I have but my leg muscles & rear end muscles are painful when ever they are used. My doctor put me on Prednisone for 2 weeks &, like magic, all my muscular problems went away within 8 hours. But now that I am no longer on the drug, the painful tenderness of the muscles has returned. Three months ago I had none of these problems. They just appeared one dau "out of the blue".

      What do you think it is?

       

    • jackie00198
      jackie00198 henry05584

      Posted

      Henry--I wish I could help you. I'm sorry you're having these symptoms. I know how distressing new symptoms can be. Muscle and joint pain is one of the many possible symptoms of ME/CFS. But those symptoms could be caused by other issues as well. Is it possible that you strained your back in some way? I guess the best thing you can do is to consult with an ME/CFS specialist, or an orthopedic surgeon (if you think you might have pulled a muscle). 

    • MommaT1959
      MommaT1959 jackie00198

      Posted

      Totally agree with you on this one. For instance, the Federal and California  Medicare system does not recognize ME as a disabling condition, however they do so with CFS/IDS. Unfortunately the US isn't as advanced in medical research and treatments as exist in other countries.  My own Immunologist/Virologist who is a forerunner in the field of ME research  works with a CFS/ME Clinic.

    • jackie00198
      jackie00198 MommaT1959

      Posted

      If you feel like you can share this info, I'd be very interested to know the name of your immunologist/virologist.

    • mandy72855
      mandy72855 jackie00198

      Posted

      I'm not prepared to share the name of my consultant but I can tell you that it was a neurologist at the Walton hospital Liverpool

    • MommaT1959
      MommaT1959 jackie00198

      Posted

      Jackie; Stanford Uniu Hospital and Clinics in Palo Alto, Ca. If you, like many on this forum, are in the UK then that's not going to help you much. So sorry.

    • jackie00198
      jackie00198 mandy72855

      Posted

      I understand the importance of privacy in medical matters and appreciate your response. 
    • jackie00198
      jackie00198 MommaT1959

      Posted

      i was wondering if that's where you were going. I live in Los Angeles and have been in touch with others who are seeing Dr. Jose Montoya or his associates. I see Dr. John Chia here in L.A., and am going to ask him about going on Dr. Montoya's protocol of Valcyte. I'll also try LDN and...dark chocolate.

    • MommaT1959
      MommaT1959

      Posted

      Yes. I'd never met a doctor quite like Montoya! The most patient, kind and truly caring doc I've ever seen.  All his fellows and associates have been the same.  Unfortunately after my first 2 years, and once I was on "maintenance" I always see someone else now.   An appointment with him is about a 6 month waiting list. All of them are great though.  I started on Valcyte, but now am on Famvir (anti viral) and plaquenil (anti inflammatory). Seeing them would be a godsend.

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