International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Discussion in 'ME/CFS Doctors' started by Cath1972, Jan 10, 2012.

  1. Cath1972


    Oxted, Surrey, UK
    Hi anyone know somebody I can see regarding setting up a properly paced exercise programme for me? Looks like I am on my own just being told to pace myself, which I obviously haven't been able to a master over the last 4 years, so I want to join a gym or get a trainer or something to do regular exercise with me who understands CFS.

    thanks very much!
  2. Valentijn

    Valentijn Senior Member

    Based on the symptoms you described elsewhere, it already sounds like you're pushing yourself way too hard. I suggest resting as much as you can and seeing if some symptoms resolve.
  3. Cath1972


    Oxted, Surrey, UK
    Hi, I know what you mean but to make my life feel complete I need to have some sort of regular exercise in my life. I have taken it easy for the last 4 years. Sometimes I have good periods especially when I lived in Greece where I walked everywhere, swam regularly and had a relatively active life. Some times I just managed the day to day things before the flu ache kicks in at 3pm. I like many was very active before, semi professional gymnast ect. I get depressed just sitting around and I have put a stone on in the last year. I need to be proactive now. I just need someone who can guide me and who can make me feel I am doing something!
  4. justy

    justy Donate Advocate Demonstrate

    Hi Cath, i havent seen many of your other posts so im not sure how ill you are - im presuming mildly affected as you are talking of gyms etc. I dont think you will find a gym in the uk that understand M.E or the implications for exercise. I had a long remmission to very mildly affected and was able to swim walk etc, however i didnt realise that i could get worse in the future and chose sports that were very demanding eg long distance swimming.
    My suggestion would be that you bring in some very very gentle exercise, very slowly, stick at the level for a couple of months and then if you dont feel worse bring in something else. If i could exercise (which i cant at all for the past 3 years) then i would start with a yoga class or dvd - you can get these specifically for M.E - in fact there is an organisation in england that runs courses in yoga for PWME. After that i would try gentle swimming and walking. In tyhe long run you may have to accept that you cant do stamina and endurance training. what i mean by this is that you may feel you can but in the long run it could make you more ill.
    Dr Myhill also has a good page on the right sort of exercise for PWME which is based on resistance training which actually builds ATP (energy in the mitochondria)

    Please be aware that although it is great that you are functioning well now, this can change, especially if you push too much in the early years of the illness. I thought i was cured after being very ill for 4 or 5 years only to go back to my full on lifestyle and eventually end up considerably worse off. I am now moderately to severely affected and have seen only a small amount of improvement in the past 3 years.
    Take care, Justy
  5. SOC

    SOC Senior Member

    I'm seconding Valentijn here, Cath.

    Based on your other recent posts here at PR, I think you may still be in the denial stage. You have a very serious illness that is likely to get very much worse if you don't manage it correctly. I suggest that you do a lot of reading here at PR to get a better understanding of the illness before you try any exercise program, or extensive travel.

    Dr Klimas has some videos out -- maybe someone can give us a link -- on how to exercise with ME/CFS. I expect you will be shocked at what is considered appropriate exercise for people with our illness. I very much doubt you are going to find a trainer or exercise physiologist who has even the slightest clue about appropriate exercise programs for PWME, particularly in the UK.

    PS Many of us were athletes or very active before ME/CFS hit. We understand what you're saying about exercise; we want to exercise, too, but we've discovered the hard way how much damage we can do by not treating our bodies correctly in the early stages of the illness.
  6. ukxmrv

    ukxmrv Senior Member


    Patient surveys showed that one of the groups that caused the greatest amount of harm in their supervision of individual exercise programs for PWME were Physiotherapists.

    Although you will find physios and gym instructors and sports trainers who say that they understand ME and exercise I have yet to meet one. If you do decide to go ahead with this (and personally I have been so harmed through exercise that I shudder to think of it) I would look at Dr Klimas's videos as suggested above and then find someone wiling to take these seriously.

    Gyms and Physio offices are littered throughout the UK with patients being told that gentle exercise will be fine for them and that it can be slowly increased. Patients usually find out that this doesn't work and that they become more disabled.

    There may have been something in the "Greece" effect for you and you may be one of those patients who does well in some climates only. Then again you may have a type of disease where remissions and relapses feature.

    Can understand your frustration though. Took me two seperate exercise problems and countless attempts to do yoga, tai chi, swimming, aerobics, weight training etc to learn that there was no safe, gentle exercise I could do without getting worse. I know of one ME patient who used to be an athlete and who still exercises with yoga etc to try and keep their core muscles firm when they are well enough to.

    I had to learn through bitter experience that for me even gentle exercise meant an increase in ME symptoms and a reduction in functioning. It may be that there is a safe level that your body can exercise to and maybe the Klimas videos will help you to find it.

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