I'm interested in hearing from anyone who is a sufferer who tries to get or remain physically fit, possibly even to the point of trying to be competitive...perhaps you once competed at elite level and still manage a good level with M.E.? Also, anyone who is a trainer and works with M.E. sufferers.
I would like to confine the discussion to true/lifelong M.E. if possible (with the cardinal diagnostic of immediate or delayed post-exertional malaise or PENE - post exertional neurological exhaustion as per the International Consensus Criteria), and exclude relatively short-term viral or post viral illness...thank you.
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Not sure it *is* true ME if the symptoms have been lifelong.
I fit your description otherwise... although I was never an athlete, elite or otherwise.
Having been ill for several decades, I sensed a small shift in my health some years ago, immediately post-menopause and always remembering the neurologist's view that it can 'burn itself out' whether it takes 3 years or 30+ and being keenly aware that one diagnosis does not mean exemption from other health problems and in need of losing weight decided to experiment....carefully (given that being completely immobile unable to open my eyes or speak is something that happens to me) I began with Random Acts of Fitness. The principal one I could manage was parking further away from the doors at the supermarket. (This also had the benefit of making parking less of a cognitive demand)
One problem I had was that brisk walking was too painful to sustain and had the consequences I don't need to describe to you. So, quite ludicrously, I decided to try running. The NHS Couch to 5K plan was asking me to run for 60 seconds, it started and finished each session with 5 minutes walking rather than asking me to do any stretching (I had very bad experiences with stretching previously) and explicitly forbad running on consecutive days. It was also something I could do by myself (or rather, with my dog, combining two things in one activity) I was delighted to find that I could complete half the first session before I couldn't run any more. I was of course ill afterwards. But I worked my way up until I had completed the first podcast successfully three times as required, and could move on. This took me a good many weeks but I was successful with every other run after that and was tremendously proud of graduating from the programme.
I have built on this since with other activities - swimming, cycling (with electrical assist), gentle yoga (online, not a class) This forum is for the NHS Strength and Flexibility podcast programme, and I have completed that (although I have not kept up that practice, I found it pretty hard and get on better with yoga)
It is very important to note that I still have to spend most of my life in bed and cannot work. (This isn't me telling myself this, it has been tested) On a run day, I put my running things on and something on top because I do not have the energy to change specially and go for a run. There are things I cannot do if I am going to spend energy on being active, important things and I work hard at keeping the best balance I can for all round well being. I am flexible in my approach and I don't engage in unkind self-talk (I do not recognise the description of the 'ME personality') A few months ago I got a Fitbit Charge HR which has been useful for looking at patterns. I am a slow runner (rarely under 9 minutes/km average pace) and trying to run faster is fairly problematic, especially in terms of after effects. I avoid road/pavement running as it disagrees with my body. I wear minimalist trail running shoes (I struggle to stay upright if I can't feel the ground) and minimalist walking boots. Oddly, in 4 years I have not (yet) experienced a running injury (well, apart from when a bramble ran after me, grabbed me by the ankle and threw me on the ground) and it appears to have largely cured decades of shin pain.
I burn few calories with my exercise but it does help me with the weight loss I needed and it brings me much joy. I am a fitter sick person and I have proved to myself this is not about an exercise phobia. The underlying condition is still there but I don't feel as though I am just waiting for a stroke or heart attack to happen.
GM, thank you for such a detailed and interesting reply. My apologies, my 'lifelong' description was incorrect and should have been 'lifelong after onset' or 'permanent after onset'. My understanding and experience is that ME does not resolve, that only rest can ameliorate it, and activity exacerbates it. Like you, I try to achieve a balance of activity for other health benefits and accept the cost of this in terms of the ME. I'm at about 20% of my physical activity levels pre-me and also like you this is achieved with a much reduced work volume and much increased rest. So my total activity and productivity is probably below 10% of pre-ME levels... which thankfully were very high!!
'A fitter sick person' - hopefully you won't mind if I breach copyright and use that, please?
Massive kudos to you for achieving the running. I too do some running and find that whilst it's hard to start when feeling ill, it does seem to balance blood sugar as fat burning kicks in and I still get that nice runner's high for a few hours afterwards. Likewise swimming and cycling, and a noseclip in chlorinated pools has been a revelation after years of post-chlorine mucosal drowning which I never associated....duh!
I've always worked on flexibility with yoga, which I find beneficial for injury prevention and rehab. My other addition to routine has been more frequent strength/resistance work (mainly simply dumbbells and stability ball), including bodyweight exercises and core strengthening. I precede these with a build-up to fairly high intensity rowing, which raises body temp and sweating as well as giving a good cardiorespiratory workout. I think one advantage here is avoidance of cold air on upper respiratory tract which seems to increase susceptibility to infection... notwithstanding getting out in nature walking, running, cycling etc. when weather permits.
I suspect we'd both agree that NICE guidelines are in essence correct, but just not evidenced and worded correctly. That's a real shame and missed opportunity IMHO.
I think the NICE guidelines are a crock of worthless and corrupt **** so no. I don't think gyms are particularly healthy places to be for those with an unusual immune system (not to mention the cost for those without earning power) There's not really any weather I won't go out in, although I am a bit wary of high winds in the woods (a tree falling on your head is more of an issue than cold air!) But we are all very individual and our condition evolves too. At one time being gluten free was very effective for me but no longer.
Do feel free to use 'fitter sick person' if you find it empowering. It is also a sad reality that looking a 'healthy' weight rather than being obviously overweight helps to avoid at least some of the negative judgments that get made.
I'd love it if others joined in this discussion about NG's...perhaps Sir Simon would deign to grace us with his insights as a psychiatrist?
I am mortally upset about your 'no' response, I was trying to create a positive spin...like exercise is proven to be beneficial so let's find ways to help ME sufferers gain benefit from it without suffering severe relapse and let's stop talking about GET as a treatment for ME. One only has to read the declared interests of the researchers on the PACE trial to know that they are headed in the WRONG direction.
So (as academics love to say)...is this a NHS site?...are we allowed to have dialogue? Come on folks, join in, I'm sure other chronic conditions can be relevant to this discussion as well as insurance companies
I was first diagnosed with ME when I was 13. I have since had 2 serious relapses, including overwhelming fatigue, painful muscles and joints, and inability to do many things for myself and needing care most of every day. During my most recent relapse, and due to suffering unbearable back pain (which also started around 13/14), I was referred to my physio. He is a specialist in chronic pain and turned everything around for me by getting me to simply try. After 6 months of consultations (talk only) he recommended that I start to get active. At the time I could only walk to the end of my driveway unaided. I started walking very short distances in early 2012. In late 2013 I competed, walking, in my first ever 10K. It still blows my mind that I can walk that distance. My physio had a simple plan to follow - put my trainers on come rain or shine and step out the front door. If I have to turn back, at least I tried. I have never, in 4 years, turned back. The health benefits that have come with the activity have been enormous and I believe, in my case, kept primarily the fatigue at bay. I have no doubt I am at risk of another relapse/s but I have faith in my body now.
Hi SR, thanks for the reply, that sounds interesting. Well done on your achievements :). I'm pleased to hear that you get benefit from the physical activity.
Do you mind me asking you whether PEM or PENE is a part of your 'ME picture', particularly after you have now become more active? Also, given your pain, has anyone ever suggested you may have FM rather than ME? I have to be honest that I'm not absolutely clear how the two are differentiated clinically, but it seems that the trend is towards seperate diagnosis and a view of two seperate populations. Regards, Steve
Hi Steve, my apologies, I did not see your reply until today.
PEM and PENE are still a big problem for me. It still fascinates and infuriates me that doing anything from some laundry to walking 5k (my furthest at the moment) will wipe me out both physically and mentally for anything up to a week. I find that anything physical that takes mental concentration as well will knock me sideways and it will take a while to improve. My way of dealing with this is planning, where possible. If I know, for example, that I will be travelling, as soon as I know I start visualisation and I do that every day. Imagine myself on the plane, in the car etc., carrying my bag and the number of people I am likely to deal with. This helps the malaise, but does not rid me of it completely.
It has been suggested that I have FM as well, in the past. However, my diagnosis as ME was mainly due to it starting out as a post-viral problem, which is typical of ME. The FM suggestion has been discussed many times, but overall, disregarded. I agree that I don't entirely understand the full differences, but I know that aspects of FM are not part of my conditions, whereas ME symptoms are.
My initial post was a positive one, but I suppose I should have put in a bit of clarity. I can achieve a lot physically, in terms of walking and even some other 'activities'. However, my daily routine is still affected by fatigue and pain, particularly in my muscles. No matter how 'good' I am feeling, there are still days when I simply can't. Can't do anything or I know it risks another downward spiral. This means that it is actually more simple, 'life' tasks (laundry, shopping, cleaning) can be the most challenging.
That is really helpful, Rachael, thank you. Also, although I may have chosen the wrong section/thread for my post, it's good I think that maybe non-sufferers will read some of these posts. The overwhelming evidence I perceive (albeit anecdotal here) is that ME sufferers often do their darnedest to be active, against very difficult and challenging odds. This is diametrically opposed to how the illness and sufferers are generally percieved and (largely due to) manipulated and misguided media coverage...all IMHO.
I have had ME with PEM since I was 12. I fully fit the International Consensus Criteria and am well read on the current research so I know how awful most of it is. I did have a remission for a couple of years but then an immune trigger made me housebound. I know this illness well after being housebound for years and bedridden for a short time.
I got to this remission with help from an excellent ME specialist who really knew the illness well and knew that it was a physical disease. I do not believe there is any psychiatric involvement whatsoever, unless the patient also happens to have depression at the same time as multiple illness can get better and worse together. My plan was rest and lots and lots of it. I did not do any activity that cause PEM so had to really scale back everything with no TV, only short bursts of reading and definitely no exercise. Only when I had no reaction from something could I up my activity and did eventually go for long walks and do more physical activity but still could not do any cardio or full on exercise until I was in remission. This pacing is in my opinion the best treatment for ME, although for the very severe it is hard to implement. I think as well the illness reacts a bit differently when it is mild. I found as I improved that I could push myself a bit more than before outside my envelope of activity, but still not too far.
I have mild ME again now after another 5 years of pacing treatment and I am very concerned about doing exercise. To me I see it like a poison that will only harm me. I bet some people like Sir Simon would love to recommend some CBT for this idea but if you have been burned before you don't put your hand in the fire again. So the way I am managing this is by walking at my own pace, so no brisk walking, and doing some gentle exercise like yoga and tai chi but stop if it gets too much. I never push myself and cannot do cardio as I just feel so ill after and after years of missing out on my life from this illness it is just not worth being back there again. You can lose weight without exercising but just might need to reduce the calorie intake a bit. With this way my ME continues to improve, I can work part time and I have an active social life. I count walking around shopping or activity related to other tasks as part of exercise, things like using stairs in shops.
I feel so bad for you guys commenting above. I know you are making sacrifices for better overall health but it seems to have such a bad impact on your quality of life. I know people made bedridden for years after pushing themselves too far. To anyone reading this who was told exercise cures ME, your doctor does not know anything about this illness so please be cautious.
Sorry I know you wanted positive replies, but I am a realist and a scientist. I have studied medical science where you look at cause and effect and I have seen enough cause and effect to know that proper exercise (as in running, cardio etc) is detrimental to people with ME. Personally I would rather have slower weight loss and maintain my quality of life. Good luck to the rest of you!
Wow, Maccy, that is such a brilliant post. Not positive??!! In my book, it's right on the money. Sadly, the NICE guidelines ain't. Did anyone get involved in today's MEAction campaign?
I send you sincere best wishes in your quest to have a life with ME.
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