The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Standing up for exercise: should deconditioning be medicalized? POTS

Discussion in 'General ME/CFS News' started by Firestormm, Aug 16, 2012.

  1. Firestormm


    Cornwall England
    The Journal of Physiology: August 1st 2012:

    Standing up for exercise: should deconditioning be medicalized?

    Michael J. Joyner1

    'In this issue of The Journal of Physiology, Shibata and colleagues (2012) from the Levine lab demonstrate that 3 months of exercise training can reverse or improve many of the signs and symptoms of a type of orthostatic intolerance known as the postural orthostatic tachycardia syndrome (POTS).

    This syndrome is marked by an excessive heart rate response to standing, a high heart rate response to a given level of exercise, and (among other things) reduced exercise capacity.

    While a number of pathophysiological explanations for POTS exist, over the last 5–10 years several labs have noted that the pathophysiology of POTS bears a striking resemblance to extreme forms of deconditioning such as prolonged bed rest (Joyner & Masuki, 2008)...'

    Was featured by the Daily Mail yesterday which referred initially to CFS/ME but later removed this reference, although POTS remains:

    A case of lazyitis? Not bothering to exercise 'should be treated as a medical condition'

    'Several chronic medical conditions are associated with poor capacity to exercise, including postural orthostatic tachycardia syndrome better known as POTS, a syndrome marked by an excessive heart rate and flu-like symptoms when standing or a given level of exercise.

    Too often, medication rather than progressive exercise is prescribed, Dr. Joyner said. He noted that a study from the University of Texas Southwestern Medical Center found that three months of exercise training can reverse or improve many POTS symptoms...'
    Simon likes this.
  2. Valentijn

    Valentijn Senior Member

    Hah, they're citing the Mayo Clinic. Worthless.
    justinreilly likes this.
  3. Firestormm


    Cornwall England
    Yes. It wasn't well received when it appeared in the Daily Wail. Unsurprisingly. Especially with the CFS/ME reference attached. I don't have a copy of that edition unfortunately. Still, at least it appears they responded to public concerns.
  4. Simon


    Monmouth, UK
    Deconditioning explains illness is a remarkably popular idea among doctors, and remarkably thin on evidence. As a perfect example, the abstract from the Shibata study that sparked this editorial merely concludes that:
    i.e. there is no evidence that it improves POTS, which is the central hypothesis here. That leaves the unremarkable conclusion that 'exercise training improves exercise response' in POTS patients. That leap from 'it's plausible' to 'it's true' is a feature of the deconditioning research I've read. One paper on the causes of fatigue concluded that deconditioning was a cause of fatigue yet provided not one piece of evidence for this, while managing over 180 references in support of other causes of fatigue.

    Likewise, the abstract to Joyner's 2008 paper mentioned simply says " the idea that systematic endurance exercise training might be helpful was advanced, and data supportive of this idea was reviewed", which is hardly compelling yet still concluded
    The caveat would have been more meaningul if they had first properly established that physical inactivity does explain some of the conditions.
    justinreilly likes this.
  5. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    It is true that exercise does improve the POTS for many POTS people (go to places in which those who only have POTS are communicating and one can see that is true from their posts) .. but for some groups who have POTS it usually doesnt eg the ME/CFS group.. many in this group including myself, dont find exercise helpful at all for the POTS.

    I myself got POTS from the ME/CFS and whether that is due to being deconditioned or not.. I dont know but what I do know if if I do more.. I get sicker. There is also a myth out there that doing leg strengthening exercises (squats, leg raises etc) can help POTS. All I can say to that is I did try that and it didnt at all help me with the POTS.
    At one point I was actually able to do 2 hrs of exercise per day for 6-8 weeks (walking and running)... that didnt cure my POTS. I was no better at all at the end of that exercise program then I'd been at the start of it. (I didnt even get any fitter.. my stamina was the same)

    There seems to be many different subgroups of POTS eg teens (usually girls) who commonly get POTS, the ME/CFS subgroup which get POTS (why would those young teen girls who get POTS with no coexisting illnesses be any more deconditioned then other girls? something is obviously going wrong in their bodies to cause it), the lymies who get POTS.... also different types of POTS eg hyperadrenal kind of POTS which may or may not have any other coexisting illnesses, low blood flow POTS etc.

    Its terrible that they try to put out that all POTS patients are alike and something like exercise will work for all kinds and in all subgroups of it.
    Tito, justinreilly and Simon like this.
  6. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland

    justinreilly and GracieJ like this.
  7. Holmsey

    Holmsey Senior Member

    Scotland, UK
    Surely there's a bigger elephant in the room. The whole notion of exersize to improve POTS assumes that there's nothing to stop the patient from exersizing. It's a no brainer that the more deconditioned you become the more fatigued (due to exersize) you'll be, that's the whole science of sports training, I'll never get used to highly paid people wasting our money by studying the obvious. Surely it would be better for those who beleive this is a mental illness to study why so many people who were previously highly driven suddenly, and I mean suddenly, develop a mental illness that leads to them voluntarilly deconditioning, in some cases to the point of death!

    That aside, in order to suggest because you can take someone with POTS only and imporve there condition by exersize that you can take anyone with POTS and do the same is infantile, you wouldn't suggest someone with multiple leg fractures start jogging because they'd developed POTS through their lying in bed all day.
    Wonko, Tally, *GG* and 1 other person like this.
  8. Desdinova

    Desdinova Senior Member

    So one of the symptoms of POTS is having flu like symptoms? I wasn't aware of that?
  9. sandgroper


    west australia
    Early in my illness I had this idea that I was just unfit. Even as a non medical person I could decide that exercise must help one to feel better. I pushed myself to go to the gym as I was not disabled at this point. Some of it was hard to do but I blamed my childhood asthma on my lack of stamina. Somehow I managed to keep fairly active for about 1 year and then i suddenly was not going. I also had been windsurfing and was not able to manage to get past a certain point. My naturopath was encouraging me to keep working and exercising even though I was struggling.

    I realise today someone would have advised GET not the way I was trying to exercise but the point was my body had limits and I just could not adjust to the idea of not being able to break through. CFS was unheard of at that time. I eventually had to stop exercising but kept working. Till i couldn't.And now I can't even do basic things like meal preparation, showering etc.

    For me I wonder about the impact of the pushing through to stay fit. Of course I looked healthy then and people would remember that I windsurfed but no-one saw how many days of recovery it took.

    Never did I believe I would be so sedentary.....its just not who I am. So when I got a prescription for exercise when I actually asked for a walking frame 8 years was all I could do to not burst into tears. Now I have trouble even sitting up in a wheelchair.

    Dr Ramsey talks about resting in the early stages of ME. I wonder where I would be now if I had given up the being physical of the 80s so that I could at least keep walking in the new millenium.

    Or was it destined that I progress to this state by some unknown biological process linked to the underlying EDS that (had it been dx) should have stopped me doing some of my physical activities just due to the actual damage that can be caused by impact.

    It seems that being ill is synonymous with ignorance in the minds of some and I am sure I was like that before I came face to face with something that cannot be fought. No amount of PMA or exercise is going to get me over this and most people don't want to hear about disability so it easier to shut us up with exercise suggestions.

    Just thinking out loud really.
    Tally and Tito like this.
  10. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    I've no doubt that exercise may be beneficial for some with POTS, but POTS is a symptom - the disturbing part is that in his letter in the Journal, Joyner concluded "If deconditioning were a recognized syndrome or diagnosis like hypertension, diabetes and POTS, it would be easier to educate the general public and medical community about the one universally effective treatment for it – exercise training."

    This is worrying because it is clearly not universally effective in CFS - there is no evidence in scholarly journals to suggest that patients can both increase their activity (objectively measured activity) and have improved outcomes at the same time.

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