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CFS/M.E. ~ A Guide to Wellness by John H. Wolfe

Discussion in 'General Treatment' started by John H Wolfe, Sep 10, 2012.

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Do you think the guide offers good advice, on balance?

  1. Yes

    3 vote(s)
    11.1%
  2. Didn't read it

    4 vote(s)
    14.8%
  3. No

    20 vote(s)
    74.1%
  1. John H Wolfe

    John H Wolfe Senior Member

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    Hi,

    I am a young man from London, UK who has had CFS/M.E. for the past decade

    Following encouraging email exchanges with members of my local M.E. support group, last week I finally decided to formalise some of my thoughts, in the light of my personal experience/things I have heard/read over the years, in the form of a blog

    Besides exploring some of the possible underlying causative processes involved in M.E. (which I recognise remain highly theoretical/debatable), I also thought I would share my thoughts on how to maximise wellness (and chances of recovery) in the hope that they will help others to cope/heal

    I thought I would post here in order to spread the word and to share in any benefits that this advice may bring to people with CFS/M.E., as well as to invite discussion and constructive feedback concerning my post:

    CFS/M.E. ~ A Guide to Wellness [link]

    Many thanks,

    John H Wolfe
    merylg likes this.
  2. Tammy

    Tammy Senior Member

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    Hi John.............just wanted to say thanks for the guide to Wellness.
  3. ukxmrv

    ukxmrv Senior Member

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    It doesn't really reflect my experience. Had ME for nearly 30 years. The emotional stuff doesn't work for me. It's so individual. Many of the things on a quick read of your page just doesn't work for me.

    The section on exercise is terrible and dangerous for a PWME. This may be the worst advise you could offer someone with ME (with PEM). It would be a very mild case that could contemplate the forms of exercise that you list here.

    The hallmark of ME as defined by Ramsay is post exertional malaise. He wrote that even on a trivial amount his patients would face an increase in symptoms. You don't seem to have considered this.

    Many of us find that bathing and caring for ourselves takes all available energy and the though that we would be able to contemplate cycling, even at half that amount that we could "tolerate" is laughable.

    What I find is that I get PEM on all exercise. Attempts to do light exercise of any kind cause PEM and offer me no benefits at all. If I use strength on exercise then I cannot do simple pleasurable things like manage a short phone call to a friend.

    What works for me is to cut out all attempts to exercise and conserve my very limited strength on doing things that make me happy or are useful.

    "3. Stay active: Light exercise every other day is probably best for most (home exercises, yoga/pilates, martial arts/dance, walking, swimming, cycling). Work out what level of exercise would knacker you out and do only up to half that amount, taking care to give yourself adequate rest
    periods, for both your muscles to recover and so as to avoid ‘crashing’"

    Your section on exercise needs to be cut. I'd hate to see someone with real ME damaged by trying to follow this advice. For example for someone with ME "warming up and warming down" are just more exercise. People with ME cannot work up to increasing exercise. That's why the GET programs harmed so many of us and left us much more disbaled than before.

    Please consider taking this whole section out. It would be useful to know if your support group is the one that has talks by the BARTs doctors?
  4. Snow Leopard

    Snow Leopard Senior Member

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    Agreed. Except for 5 minutes of home exercises (stretches etc), I dare say most CFS sufferers would not be capable to do the other stuff on that list for very long.

    I think a better title would not include 'wellness', but rather "A guide to quality of life" or something similar, because there is no guarantee of wellness, but some of these tips can certainly improve quality of life.
  5. John H Wolfe

    John H Wolfe Senior Member

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    NOTE: I have now updated the guide, to include acidosis, potentially a very important piece of the puzzle that fits in with some of the stuff already in the guide on carb intake/problems with gut flora

    No problemo, hope you find it helpful :)


    "Light exercise every other day is probably best for most"


    Most of us are capable of "home exercises, yoga/pilates ... walking" at low intensity/for short periods. The other activities are indeed pitched at people who are mild cases/nearing recovery


    I take your point but I distinguish mild exacerbation of symptoms from potential for relapse, that's why I follow the 'do half' principal; so long as you're nowhere near knackering yourself out exercise can be benifical on a number of levels - psychological (endorphins) as well as physiological (cardio/increased oxygenation)


    Well then you should indeed be careful not to over-extend yourself beyond nominal activity


    I'll put this one down to experience and chose to ignore this highly unwise comment on this occasion, as I understand where it comes from


    Yes, good point, they are forms of activity in their own right, the effort involved in which should be factored into calculating manageable levels of activity


    GET/pacing are not helpful for everyone, and indeed harmful for some, but that is not to say that ensuring that one stays active within sensible, sustainable parameters should not be advised


    I don't think so. Indeed there is strong opposition in the support group to the erroneous assumption/suspect evidence surrounding the purported widely experienced efficacy of pacing regimes


    I provided a few ideas that span a range of sub-groups-by-severity, as made clear at the beginning of the guide, as well as in the activity section itself, it is up to individuals to tailor their activity regime according to the 'do half' principal (leaving plenty of gas in the tank for nominal, day to day activity)

    "Wellness" here means being as well as possible and putting yourself in a position to heal - it doesn't necessarily mean 'returning to being well', although that is of course the hope :)

    Thanks for your comments folks
  6. snowathlete

    snowathlete

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    I tried 3 or 4 minutes on a cycle machine when I had medium severity ME. I could definitely have done more at least double.
    The bike was on the lowest setting and i felt fine.
    Next day I could hardly get out of bed and in the two years since I have had much worse illness. I am not the only one with this experience. To say that most would benefit from exercise is just false.
    You posted on here presumably for feedback. My advise is to take it. If you really believe that some people with the condition benefit from it then fine, but adjust the levels of expectation you give and at least provide a warning that some patients react extremely negatively to exercise.
    I feel rather angry with the NHS who did not warn me before prescribing exercise. I suggest that you wouldn't want to be to blame for even one person ending up like me because they took your advice.

    I don't see anything wrong with creating a blog like this but as you acknowledge yourself This stuff is highly theoretical and so it's important to present it in such a way so that readers are aware that it could work for them but potentially they could be disadvantaged by it. This goes for anything in the blog not just exercise.
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  7. snowathlete

    snowathlete

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    I just read a bit more and see that Amitriptyline is mentioned as perhaps reactivating EBV. I hadnt heard about that before, so thats interesting for me. Do you have a reference to information on this?
    I take Amitriptyline for sleep, which i started taking a little over a year ago. For me personally it made a massive difference to my sleep which was terrible. So, im a big fan. Having said that, i would quality that by pointing out that although there are cases like mine where it has proven helpful, most people that i have spoken to with ME who tried it found it very difficult to take (side effects) and didnt seem to benefit much, or even found it made their ME worse. So, its clearly not for everyone. Maybe there is something in this reactivating of EBV?
    Shell likes this.
  8. Shell

    Shell Senior Member

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    I am another person who was told to exercise through it and went from being able to get around the block on crutches to needing a wheelchair even for the end of the road. I am much sicker now thanks to the silly exercise regime. I should have been given bed rest as Dr. Nancy Klimas has stated about ME patients.
    As many of us have underlying heart problems it's a risky business telling us to get on a bike.

    snowathlete I too am on Amitriptyline. It has helped sleep and pain control.THIS PAPER refers to hypersenstivity syndrome referred from THIS Article : I am not sure what to make of the article. I think the paper (the research/study) is referring to patients who are receiving the on-label adminisitration of Amitrip which would be for depression. When I worked with this drug the average patient received 150 mg a day. Some were on doses lower than that some on higher. It was rare for a patient to be on 75mg which is the lowest therapeutic dose for depression. I saw patients have some pretty nasty side effects.
    It is a nasty drug at full dose and that's why it is rarely prescribed for depression these days.
    I would like to see studies and research showing whether low doses of Amitrip (I am on 50mg for pain) have the same effects as depression treating therapeutic doses.
    At one point when my pain levels were creeping back to horrible levels I pointed out that I couldn't get much higher dose of the drug without other problems.
    For ME patients (and FM as I was being treated for) other pain and sleep solutions may be needed such as Pregabalin, Gabapentin, morphine and methadone.
    justy likes this.
  9. justy

    justy Senior Member

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    Sorry to say John that i dont agree with what you are saying here. Most here are NOT capable of home exercises such as yoga or pilates on a regular basis. My reduction in symptoms has only come about by a huge decrease in activity and using a wheelchair instead of walking a lot - even a couple of yoga stretches done daily is too much and causes a relapse/worsening of symptoms for me - i know i am not the only one.

    Again i have to take issue - best for htose near recovering or very mildly affected - certainly not best for MOST.
    All the best, Justy.
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  10. ukxmrv

    ukxmrv Senior Member

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    You really haven't taken on board the important things though. Ramsay said that even trivial exercise would make his ME patients worse.

    It may be that there are some very mild patients out there but to include a section on exercise is a huge mistake. People would need to experiement before they can set their limit. This would result in PEM that may takes months to recover from. Then there is the fluctuating nature of the disease. One my be able to work x number of steps one day and then the next will get such PEM that they are back in bad once again.

    Exercise is potentially dangerous for PWME.

    Moderate and severely affected will not be able to do yoga or pilates (!) for example and a 5 minute walk will leave them worse off. Read once again what Ramsay wrote and reconsider your position.

    I don't know where you get the idea that a typical ME patient would be able to do yoga or pilates. If you read Ramsay and understand PEM you would see that this is absurd.
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  11. lansbergen

    lansbergen Senior Member

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    You presume the systems are not disrupted. You are wrong.

    The endorphin system does not work properly..The immunemodulator I take, does the trick but exercise does not.
    .
    Increasing oxygeneation by exercise is wishfull thinking as long as the lungs do not work the way they should.

    I nearly died of heart and/or lung failure. It is clear you have not been there otherwise you would not advice exercise.

    A major problem was that the severe punishments did not teach me the lesson they should have.

    The punishment and reward systems failed.

    It is extremely difficult not to overdo. Even crawling to the bathroom can be to much.
    peggy-sue likes this.
  12. alex3619

    alex3619 Senior Member

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    The evidence is that exercise decreases oxygenation in the brain of those with ME. Many cannot walk at all ... some can barely crawl, and some are close to paralyzed. I tried light tai chi as when I was on the mild end of moderate severity - it was too much. DItto chi kung. Both are similar in intensity to yoga.

    I am now at the severe end of moderate severity. My gass tank left at half full would mean I would do much less than I am doing now - I tend to function at about 90% of what I can handle, and still I cannot do all the things that people are supposed to do. So any exercise, at all, would mean I would have to substitute it for cooking, or cleaning, or showering, or something. I already don't go grocery shopping, or travel any distance. If I do too much I don't manage to get my mail several days running, and its only a very short walk.

    Everyday chores necessary to function are the limit of many at the worse end of moderate. Severe patients are worse again. Very severe need others to do things for them or they could die. There is no capacity for exercise. Its different with mild patients who have managed to switch their lifestyles to low demand activities. Some of those might benefit from light careful exercise, and a few can handle more than that. Most will do a lot of that by engaging in everyday activity, including working for those well enough to handle it.

    The rules to exercise for us are very different from the rest of the population, and at the same time very similar. We have an extremely low aerobic threshold. Like everyone we have to exercise below that. If we are lucky, or get good advice, we can do enough exercise to get a training effect and slowly raise that threshold. If not then everyday activity has to be enough. I actually think light strength training may be the most beneficial exercise for most of us, based on low repetition interval training with long rest periods. Increased muscle mass makes things easier, and its a good thing for someone with ME, though difficult to achieve. Aerobic exercise is just idiocy for at least half of us in my opinion, based on current science. We need to keep intensity and oxygen utilization down.

    Don't get me wrong - once we know how to reverse some of the ME pathophysiology reliably we will exercise more. Based on my experience of remissions, for myself and what I hear from others, we automatically increase activity when we improve. We don't need to be asked, or coerced or taught. We just do it.

    Bye, Alex
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  13. John H Wolfe

    John H Wolfe Senior Member

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    I’m sorry to hear you’ve had a bad experience with exercise. Something I’ve made quite clear in my guide is that people should work out how much is manageable and be responsive to what their bodies tell them

    Activity” here incorporates anything that involves movement, from normal day to day activity, through gentle movement/home based exercise right the way through the spectrum to full on aerobic exercise. Where on the spectrum it’s sensible to start out depends on the individual circumstances of each and every one of us. It may be that the most severely affected 5%-10% should focus on the other aspects of wellness before entertaining the prospect of any activity (certainly over and above what they already do), however for “most of us manageable (and ultimately progressive) activity is an integral part of maximising wellness :)

    I have left my prescriptions very open indeed and have warned of the effects of over-extending ourselves


    I think I read it here:


    http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Factors in EBV Re-Activation - CFS ME.pdf

    I think folks have got me wrong here, perhaps I wasn’t clear enough – I have now reworded this section to this end :)


    I’ve now elucidated what is meant by home exercises for those who were getting the wrong end of the stick


    Also, beginner level gentle pilates/yoga is really not that intense for mild-moderate PWME (which constitutes the majority of people with M.E. ~ what “moston here can manage was never my contention, I’m unfamiliar with the demographics of the forum) and gets a lot of recomendation among the support groups I’ve been attached to over the years, including from some members that use wheelchairs :)

    I am sorry to hear that. The closest I have come to understanding what it is like to be severely affected were:


    1) When I initially caught mono/EBV
    2) When I went on an extreme anti-candida diet and was so weak/ill I was effectively bed bound for the first week

    ..during those periods I am all too aware that extra activity would probably only have set me back, so don’t get me wrong, I do understand to a certain extent where you are coming from and do see your concern as legitimate, I just see the response as slightly disproportionate, from experience (of a wide variety of people with M.E.)

    I suppose we will all see exacerbation of our symptoms to some degree post exercise, but that is not to say that the condition itself worsens (unless you cross a threshold systemic exhaustion/stress point). Everyone I know who has moved up through the gears and gone on to recover/becoming only a mild case has done so against a background of activity, rather than inertia. That said, relapses are often linked to overdoing it, so a cautious, if open minded, approach is perhaps best


    This is a genuine concern, you’re quite right, and I had worded it in a rather haphazard way I must confess – progress should be measured out carefully, and individuals should remain vigilant and responsive to what their body is telling them, particularly those at the extreme end of the severity scale


    Hopefully it goes without saying that if you’re having a relapse, or with-virus, that you should attenuate your activity regime


    Crossing the street is potentially dangerous but does that mean we should never leave the house? Nope.
    You look both ways, listen, and look again if you’re not totally sure it’s safe, then you head out and cooly begin to cross, placing one foot calmly in front of the other. If you see/hear someone come screaming round the corner then you don’t panic, you just take a couple of steps back, gather yourself and then try again when the danger has passed..

    The endorphin system, along with many other bodily systems, are indeed dysfunctional in PWME, however that is not to say they become totally redundant/inoperable, it's just that some of the functions are markedly reduced


    Again, the effects won’t be the same as in a normal, healthy subject, and there is acidosis, toxin-muscle action, and other issues to consider, but, on balance, I do think it stimulative


    I am sorry to hear that and indeed I have not, however, I would direct you to my above reposts concerning individual design of sensible activity, and the percentage of PWME who find themselves in the same predicament as yourself


    Thanks for the thoughts/feedback all :)
  14. justy

    justy Senior Member

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    I believe the figure for the amount of severely affected patients is 25% - not the 5 - 10% you quoted. I do not consider myself severely affected and yet maintain that gentle yoga or pilates (which i did for many years before becoming ill) is not sustainable. I guess only the very mildly affected are attendiong support groups - the rest of us cant even get to them.
    Justy.
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  15. alex3619

    alex3619 Senior Member

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    "Hopefully it goes without saying that if you’re having a relapse, or with-virus, that you should attenuate your activity regime"

    There is a problem with this - most of the time doing excess has nothing at all to do with relapse or infection. The capacity is unpredictably variable. This is why the exercise physiologists base much of the exercise we do on heart rate (though with severe POTS this can be unreliable I suspect).There is also predictable variability - eat the wrong food, be too active for too long, or react to the wrong chemicals, and capacity suddenly declines. That can be compensated for to some extent in planning.

    In my case I use breathing to indicate excess. If there is a shift in my breathing a certain way (not just heavier breathing but its hard to describe) I know I have done too much.

    My activity capacity one day might be half what it is another, without relapse or infection. That variability is what catches us if we think we can do what we did before and so overdo things. The delay in symptom exacerbation means we only really realize we have overdone things long after its too late.

    Again, it can be different in mild patients, or about half of us. There is often enough reserve capacity (provide our lifestyles are in balance) to do exercise. When I was only a mild patient I used to exercise regularly. Its possible. Its also one of the things that can turn mild patients into severe patients, based on what I have seen, particularly if we are into boom/bust cycles.

    Part of the problem we face is that the CFS community, and possibly the ME community as well, have a mix of different diseases. So our capacity is different. This will be unravelled as the science evolves - in time we will learn how it can be done. I look forward to being able to exercise again the way I used to.

    Bye, Alex
  16. alex3619

    alex3619 Senior Member

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    Hi Justy, the figure I used is 10% very severe, 15% severe, 25% moderate, and 50% mild. I do not know if that is accurate though - nobody has done good enough analysis to really define these figures reliably. I tend to presume though that nobody reading these forums is very severe .... that end of the spectrum cannot use a computer. Bye, Alex
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  17. lansbergen

    lansbergen Senior Member

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    I agree.
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  18. lansbergen

    lansbergen Senior Member

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    It still astonish me I ignored the warnigsigns so many times for so long..

    The signs were there but I did not obey.

    I should have listened to my body.
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  19. justy

    justy Senior Member

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    Hi Alex - my remark about the % affected was aimed at John - not at you. You have 25% severe on the basis of 10% very severe, 15% severe. Hence the 25% group! I agree with you totally about the unpredictable nature of this illness. One week i can go out and about with someone to drive and push the wheelchair - i can shop and walk a bit and talk and enjoy the outdoors - other days or weeks i am stuck at home on the couch or in bed feeling awful.
    Crying is my sign - sudden tears and also irritability for no reason means i have way over done and will have to compensate with 3 or 4 really good do nothing rest days.

    I wish i could remember where i saw it, but there was a really good sheet on the net from a CFS doctor about activity levels and when to execise - he suggested only when 80 -90% well - essentailly in a good sustained recovery. Dr Myhill also only advocates strength training with weights and resistance when near to recovered. In my last long remission my rates of activity and eventually exercise just went up naturally as i became able to do more. Eventually i could do yoga and swim fairly regularly and do long walks - but i reached a peak beyond which i could not go. I think that my overdoing with activity (working 2 long days a week as a gardener) when i was only very mildly affected helped to nudge me ito ill health again when i caught measles in 2008. My advce would be, even to those recovered to tread very carefully. You only need to add a nasty virus to overdoing execise and a busy day to day life to go right back to square one - or in my case further back into worst health than i had ever had before.

    All the best. Justy
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  20. alex3619

    alex3619 Senior Member

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    Yes Justy, I was agreeing with you, just putting down the range of figures in a more detailed breakdown. It is interesting you find crying to be a sign. That is never a sign for me, but a sudden increase in brain fog is another sign (aside from abnormal breathing). That would be a brain sign, and it might manifest differently in different people. Do others have more tells? It would be nice to make a list. Bye, Alex
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