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Graded Exercise Therapy? CFS for two years.

Posted , 9 users are following.

seidman
seidman

GET is based on the idea that carefully managed increases in exercise, often combined with CBT, slowly improves health.  

I used to to be extremely fit and know my body well.  I quickly discovered previous attempts at exercise to become well again are really really bad with CFS.  

But, very aware of physical deconditioning, I also recognise the need to do more than lay down all day.  So I started a very limited exercise program, about 1/50th of what I used to be able to do, in terms of Cals burned.  At first, over a period of a couple of months I found a gradual improvement and thought GET might work.  But, the improvement levelled out and then decline, needed to weeks off - then trying again.  Similar pattern, repeated three times.

GET manuals seem not to allow for this possibility- they assume continued very slow progress.

Have any of you without anxiety or mood disorders had GET success? 

1 like, 31 replies

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  • andrew22534
    andrew22534 seidman

    Posted

    Hi, first time round i managed a working recovery, and exercise became part of my recovery process i paced my days and slept or dozed a lot of evenings but was able to bring in exercise and found that as part of a programme it helped... on relapse i have not even hit my first targets yet after 14 months... in fact currently a lot worse than ever before. one lesson is keep pacing life dont go great i have recovered, becasue you havent.......... (personal view)  
  • claire45280
    claire45280 seidman

    Posted

    Hi. I've had ME since 2003 and I still struggle getting the balance right between activity and rest. I am currently in another relapse and am having a 24 hour heart monitor tomorrow to confirm POTS. I agree that resting all day is not good even though it makes me feel better. I have gone through this relapse much better as I haven't allowed myself to decondition. Although this is giving me peaks and throughs I am still able to go food shopping with a lot of help from my son.  Every time I have managed my own GET it does lead to a relapse, however, I just think it needs fine tuning to be successful with lots of give and take for the difference in varying energy levels each day.
    • claire45280
      claire45280 seidman

      Posted

      POTS is 'postural orthostatic tachycardia syndrome' its auntonomic. The heart rate goes up on standing. A lot of people have a large drop in blood pressure too. My blood pressure goes up when I stand up and lower when I lay down. Not sure how long I've had it as the horrible feeling you get when standing, I though was just part of M.E. My heart rate can go up to around 145 after light activity.
  • Fidd
    Fidd seidman

    Posted

    I think that starting any sort of exercise programme will lead to some improvement in an ability to do the programme, ie: if you start doing pilates your body will prioritise the muscles used in the programme, etc. This doesn't lead to overall improvements in fitness though, and can lead to patients spending more of their time and effort on activity that they don't value but is a aprt of GET instead of activity that they value in and of itself.

    Overall, the evidence we have shows that carefully done GET is no more useful for CFS than placebo, and futhermore, it takes much more time and effort than a sugar pill. Also, lots of people do seem to have difficulty with GET, the safeguards around it's use are poor, and many of those providing GET to patients seem to be misinformed, or else deliberately dishonest and manipulative. It's not something I'd hugley recommend. Personally, I think that CFS patients are best off doing what they find works best for them without the interferance of a therapist.

    • seidman
      seidman Fidd

      Posted

      Thanks I agree.  If you search for healthline and on their site you'll find research which proves CFS has an ongoing biological markers.

      Ive also found a PDF with detailed medical chemical analysis which shows that GET can damage some sufferers.

    • seidman
      seidman Fidd

      Posted

      Also found this...

      CFSNeuroendocrinology Letters Volume 30 No. 3 2009 

      A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS

      Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a debilitating disease which, despite numerous biological abnormalities has remained highly controversial.

      Notwithstanding the medical pathogenesis of ME/CFS, the (bio)psychosocial model is adopted by many governmental organizations and medical professionals to legitimize the combination of Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) for ME/CFS. Justified by this model CBT and GET aim at eliminating presumed psychogenic and socially induced maintaining factors and reversing deconditioning, respectively.

      In this review we invalidate the (bio)psychosocial model for ME/CFS and dem- onstrate that the success claim for CBT/GET to treat ME/CFS is unjust. CBT/ GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them adversely, the majority of them even reporting substantial deterioration.

      Moreover, this review shows that exertion and thus GET most likely have a nega- tive impact on many ME/CFS patients.

      Exertion induces post-exertional malaise with a decreased physical performance/ aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, “fatigue”, and weakness, and a long lasting “recovery” time.

      This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal axis.

      We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful “rehabilitation therapies”, such as CBT/GET.

    • andrew22534
      andrew22534 seidman

      Posted

      intereresting and will look at the website... I think for me the exercise worked as part of my day becvasue of my previous elite fitness i have found that those who try and teach GET etc dont have much in the way of actual coaching or physiological knowledge and as a coach i used to question their progrommes so much that they heated tryingto get me to do stuff, without also noticing that i was often question to try and mentor them or actually seek answers... as a coach i came up with my own version of GET which worked for me then, sadly now i cant hit my own first targets so i have to admit that get may be part of a recovery if you can set a sensible programe for yourself. my gP told me that nice expects patients ot become experts in their illness and he works with me very well on that basis but even between us we havent been able ot push my body into recovery i think this time round i will have the oppertunity to learn loads of new stuff about myself and ME/CFS, Prinzmetal + syndrome X, POTS and intermitant arrhythmia ... the latter being common in people who are fit and healthy athlete types.... darn!! you look as though you are starting to become your expert, well done! and keep feeding us info too, it is helpful and useful!
    • seidman
      seidman andrew22534

      Posted

      I was very fit from cycling. Resting bpm of 38 - with strange heart beat pattern. GP sent me to heart specialist, who was also very fit with same beat. Specialist not at all concerned!

      I'm finding a 20 second version of HIT is acceptable.

    • seidman
      seidman andrew22534

      Posted

      High Intensity Training. I saw that folk see great gains when they are healthy by doing 2 minute bursts flat out. So, I thought that sort of thing better than 10 minute slow walk, which is all I can do. So, I do 20 seconds of pressups, crunches, wall sits, dumbells, step ups, triceps dips - all with rests in between. That keeps me stronger than a boring slow walk, raises my pulse for a while.
    • andrew22534
      andrew22534 seidman

      Posted

      aha, i know it as super setting but yes it does do great things as long as you aslo remember in the process to have a long rest as well as the normal rest days, super setting has a big impact, but works, hadnt thought of it for me, will try it...
    • IngeniumSingula
      IngeniumSingula Fidd

      Posted

      I agree with you Fidd.  GET does not work with CFS in the way it would with someone deconditioned from an obvious cause ie a fracture.  It assumes no underlying pathology and doesn't allow for the post exertional malaise.  
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