Thursday, 8 December 2016

Guest Post by Simone: Far too many stories like this!

Thanks to Simone for this guest post, which was inspired by the recent blog post by Rosa Rainbows:
"How me and my M.E became worse"

Simone writes:

There are far too many stories like this. People with ME/CFS are being told by many health professionals that their symptoms are just in their head and that, to get well, they need to exercise. The problem is that research is increasingly finding that on a physiological level, people with ME/CFS can be damaged by exercise. Our cells don't make ATP (energy) properly so, when it's used up by exercise, our system collapses. Many people have been made worse by either pushing their bodies to keep going with their lives or by exercising (or both).

I did graded exercise therapy two years ago (at the suggestion of my GP). I was walking for 2 minutes twice a week (I would go to the street corner and back). It would take me 45 minutes to recover from that walk, and then I'd be wiped for the rest of the day. Logic suggests that, over time, my body would gain fitness and I would be able to increase my walking duration and feel better from the walks. Instead, the opposite happened. At the end of 3 months, I still couldn't walk more than 3 minutes, and it was taking me longer and longer to recover. I wasn't feeling better, I was feeling worse. During that time, I saw a specialist who told me to increase my walking to 15 minutes a day, three times a week. I just stared at her, when she suggested it, wondering how I would do that. She must have seen the puzzlement on my face, so she (un)helpfully suggested I break it down into 5 minute chunks, and do them across the day.

Then I started reading the research into exercise with ME/CFS. Things like abnormal ATP production, lactate levels, gene expression, changes in blood metabolites following exercise. Abnormal VO2 Max test results are such a reliable indicator of ME/CFS that a 2-day cardiopulmonary exercise test (CPET) was proposed as a diagnostic test for ME/CFS, except that the test is dangerous for us in that it can take months for people to recover from (the risks are so high that they won't do the test on someone like me). Because of the risk of harm, the test isn't recommended as a diagnostic tool.

After reading the research, instead of following the advice of the doctor to increase my walks, I stopped walking... and I started to improve a little. I wasn't cured, but I wasn't getting worse anymore. (Unfortunately, months later, I got an infection and then went backwards for 6 months, but that's another story!).

At a recent international ME/CFS conference which world leading researchers attended, provocation studies (in which exercise is used in a carefully controlled way to exacerbate symptoms, and measure physiological correlates) were a key feature. These studies are like giving sugar to a bunch of diabetics, in order to understand the process of diabetes and find ways to test for and measure it. This is how exercise (& exertion generally) is being viewed by ME/CFS researchers now, like sugar to diabetics.

It is becoming increasingly acknowledged, within the research community, that ME/CFS is a hypometabolic state. Our bodies have shut down metabolism (energy production). Many think that this shut down has a protective function (to protect us from heart failure - one well known doctor has noted for 20 years that we look, in many ways, like people with functional heart failure, but that something prevents us from crossing that event horizon - from some sort immune process or something else (still many unknowns)).

Despite this, the prevailing view within the medical profession (most of whom do not keep up with the research) is still that this condition is simply caused by activity avoidance, and that people need to be encouraged to exercise to recover. So, despite the researchers viewing exercise for people with ME/CFS as sugar is to diabetics, doctors all over the world are recommending it to their patients. When their patients say that they feel worse, the doctors tell them that it's in their head, that it's a normal part of regaining fitness, and to keep going. But it isn't. It's dangerous.

Please, if you know someone with this illness, never encourage them to exercise, or to push through. If they have been misdiagnosed with ME/CFS (which frequently happens) and instead have some form of idiopathic fatigue, they may respond to exercise. But if they have ME/CFS, there is a very strong chance that they won't respond well, and that they will instead be damaged by it.


  1. Just FYI: there is a whole exercise protocol for people with CFS based on NOT EVER exceeding the anaerobic limit. Your own heart rate tells you what is safe (the limit at which you don't have to go into aerobic energy production, which we can't do).

    It is very hard to keep your heart rate down - but doable - and supposedly safe for us.

    I'm trying it - when I can get out - with a walker so I can immediately sit down - and a chest strap heart rate monitor (there is not a reliable wrist one).

    Again, supposedly, you can work your way to a better fitness stage, if you keep that heart rate down when you do it, go VERY slow, listen to your body, and never ever push through anything. I think there is a video from Dr. Klimas somewhere online that explains it.

    I'll let you know how it goes - but it is supposed to avoid the crashes. There have been times when I went out, and couldn't keep the HR down, so I can right home. It takes FOREVER for me to walk to the corner! And apparently I can't also be digesting at the time (diverts blood flow, and makes the heart work harder to do two things at once).

    Read up if you're interested, see if it makes sense.

    GET is thoroughly debunked for us, and damaging, and dangerous to try.

    1. I certainly wish UK medicine would get up to speed on the harms of GET and acknowledge that the evidence supporting it has been debunked!

  2. There are also videos in the Workwell Foundation site by Mark VanNess and Staci Stevens explaining how and why conserving energy, and staying under our anaerobic threshold is necessary. Tiny amounts of restorative/aneleptic exercise lying down and not doing aerobic exercise eg walking 6 times as much rest as "exercise" and no more than 2 minutes of "exercise" at a time. Stretching/flexibility....All guided by our heart rate.
    We are all different, but for me, as weird as it sounds, I became more able to walk by avoiding walking. For months, in order to stay under my anaerobic threshold, I had to avoid all walking/crawl/ use a wheelchair just to get the the bathroom.

    Then almost imperceptively i found myself walking a little. Mentally I kept trying to avoid walking, yet my body, when it was able would automatically, I would just find myself in the bathroom....however the turn around didn't start until I really focused on staying under my anaerobic threshold 100% and spending time each day getting my heart rate as low as possible.
    Simone's storey is so right far, far too many people have been and are still being harmed by ill conceived ideas that everyday exercise and aerobic exercise will help people with CFS.
    Dr Lucinda Bateman calls it the exercise conundrum - a fine line between doing enough activity to minimise deconditioning and worsening from doing too much.