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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

72 Replies

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  • linda83143l
    linda83143l ChloeCybil

    Posted

    Hi. You are right I feel. I rowed with my consultant over this issue.

    I have ME and Emphysema and have to take things slower.

    Have a lovely day and thank you for enlightening us. X

  • Flowerlady
    Flowerlady ChloeCybil

    Posted

    I have Fibro, diagnosed 3 years ago. And last week went to Rheumatologist and he now thinks I have ME...great news.. awaiting results now...
    • ChloeCybil
      ChloeCybil Flowerlady

      Posted

      Oh, I am so sorry to hear that. You certainly don't need a double dose of being sick. Handling one is more that enough. Keeping my fingers crossed for a good outcome. 
  • helen70967
    helen70967 ChloeCybil

    Posted

    As far as I am aware CFS and ME are used interchangably. What people tend to mean when they are talking about ME as a completely separate condition is Neurological ME. This can only be diagnosed through a brain scan showing the relevant abnormalities.
    • jackie00198
      jackie00198 helen70967

      Posted

      There was a recent study done in the U.S. using CFS patients and healthy people. Brain scans were done of both groups. CFS patients had viewable damage to the nerves in their brains. (I'm paraphrasing the exact scientific terminology.) I've never heard the term "Neurological ME," but it's widely believed and ME/CFS patients have problems with the brain and the central nervous system. So I don't see  how a separate entity, like Neurological ME, could be diagnosed or could exist. Just me being my usual questioning/skeptical self. 
  • helen70967
    helen70967 ChloeCybil

    Posted

    Hi Jacquie

    I checked it with my doctor yesterday because I was getting confused. What he said was that the term CFS describes the set of symptoms and ME describes the neurological degridation shown in scans. So you are quite right and I do appologise. I must have had my wires crossed.

    • david59662
      david59662 helen70967

      Posted

      My GP said that too. I do not have ME (as brain scan was normal) i have fatigue, or PVF.
  • MSME
    MSME ChloeCybil

    Posted

    My doctor snapped at me when I said I had ME/CFS,  Said " it's the same condition"
    • helen70967
      helen70967 MSME

      Posted

      It becomes rather disconcerting when the medical profesionals don't seem to know about the conditions. Here's hoping that one day they come to an agreement and we can start moving forward with a more effective treatment program.
  • dragontest
    dragontest ChloeCybil

    Posted

    I agree with you entirely myalgic encephalomyelitis (ME) and CFS are different in several ways, as it is understood in the UK by most medical staff. The USA and other parts of the world use one descriptor and the UK use others; it could be down to research funding or just approaching the condition from different angles that highlights the differences.

    I have myalgic encephalomyelitis and never really had a day free of symptoms in 20 years, so much for the doctor who told me 3 to 6 months and I would be as good as new...

    I would love to go to a gym, go swimming or just go for a walk in a wood. I tried swimming once but the two lifeguards on duty had to pull /push me out, as I could not lift my own body weight out of the pool I was that tired from a few minutes in the pool.

    I also went to the JR hospital many years ago I wasn’t correctly diagnosed by the Dr's there then we moved north and went to the Royal Hospital in Manchester where they informed me I had ME. Then 10 years or so later my Doctor sent me to Leighton hospital in South Cheshire where after a couple brain scans MIR etc. I was told you have incurable and untreatable ME the neurologist told me people do die from the condition and complications arising from the condition so just potter. He told me in a small survey in to the causes of death among people with ME, researchers found that heart failure was a common cause of death among the cases examined. With the mean age of death from heart failure was about the mid to late 50’s, which is more than 15+ years earlier than the mean for the greater population.

     

  • dragontest
    dragontest ChloeCybil

    Posted

    I agree with you entirely myalgic encephalomyelitis (ME) and CFS are different in several ways, as it is understood in the UK by most medical staff. The USA and other parts of the world use one descriptor and the UK use others; it could be down to research funding or just approaching the condition from different angles that highlights the differences.

    I have myalgic encephalomyelitis and never really had a day free of symptoms in 20 years, so much for the doctor who told me 3 to 6 months and I would be as good as new...

    I would love to go to a gym, go swimming or just go for a walk in a wood. I tried swimming once but the two lifeguards on duty had to pull /push me out, as I could not lift my own body weight out of the pool I was that tired from a few minutes in the pool.

    I also went to the JR hospital many years ago I wasn’t correctly diagnosed by the Dr's there then we moved north and went to the Royal Hospital in Manchester where they informed me I had ME. Then 10 years or so later my Doctor sent me to Leighton hospital in South Cheshire where after a couple brain scans MIR etc. I was told you have incurable and untreatable ME the neurologist told me people do die from the condition and complications arising from the condition so just potter. He told me in a small survey in to the causes of death among people with ME, researchers found that heart failure was a common cause of death among the cases examined. With the mean age of death from heart failure was about the mid to late 50’s, which is more than 15+ years earlier than the mean for the greater population.

     

  • dragontest
    dragontest ChloeCybil

    Posted

    The many differences between CFS and M.E. See http://www.hfme.org/comparisonchart.htm

    Emis Moderator comment: I have removed the article that was pasted in its entirety in here as it is a copyrighted article. I have provided the direct link to the original article in its place.

     

  • Rw057
    Rw057 ChloeCybil

    Posted

    Sorry if I offend here. But this is my opinion.

    ME/CFS/Fibromyalgia are the same things until more research suggests otherwise. There is complete insufficient research to distinguish or define them.

    I have ME/CFS but I also have PTLDS , arthritis and I have migraines due to brain swelling (ME symptoms).

    They are purely umbrella terms for a collection of symptoms. We are diagnosed with ME/CFS when everything else is ruled out. No one fully understands this disease and everyone has different symptoms but they are all the same thing, including fibromyalgia. Symptoms may differ greatly and it may be revealed one day what truly causes these symptoms but for now, there is a complete lack of research and therefore no one can say they are different syndromes.

  • StrivingOn
    StrivingOn ChloeCybil

    Posted

    Time will hopefully sort this out.

    My take is that CFS is the proper term and that the use of ME, brought in to counteract the general public's perception of CFS as a 'Tired All The Time' self-indulgent malingering, should be reserved for the specific sub-set of CFS sufferers who show the brain and nerve changes found in various studies. I do, though, understand why people without a scan showing those changes are sensitive to the label CFS; I use ME/CFS in public forums until I see that, like here, the term CFS is accepted without rancour (and I have IMO been bullied on other forums where I deviated from the party line).

    As for medical professionals, I'm happy to use the term CFS as that seems to be the party line in the NHS. I don't want pride/semantics to get in the way. That said, I have little experience of discussing CFS with medical professionals as I have shied away from approaching them (I'm self-reliant and hate thowing myself as a supplicant where I may be seen as weak, particularly as I see ME/CFS as a Slough of Despond from few escape). 

  • mandy72855
    mandy72855 ChloeCybil

    Posted

    Hi Chloe, I've been going to a CFS/ME hospital and the consultant there confirmed that they are both the same disease. There appears to be some controversy about this as my friend for some reason told me that I had CFS not ME. That's why I did my research and asked consultants, they after all are the experts sorry for the rant but just needed to clear this up

    Mandy

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