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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. snowathlete

    snowathlete

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    Almost everyone here says the same thing. Exercise, even mild, even once, carefully, is highly risky. It's what the top ME doctors say too. Yet you still insist on pushing it forward as a good idea.

    It's not enough to say stuff like, each person should ease into it, set intensity according to severity etc. you aren't warning people about the risks. Worse you use an inappropriate example - about the road - which is completely different and just shows that you do not understand risk. Risk is about both the likelihood of something happening (which despite feedback you don't seem to take on board sufficiently) and about the cost attached if said event occurs. Again, your being told that it's severe, but your response shows that your not taking it inboard.

    At the end of the day you are ignoring what is tight before your eyes because it isn't in line with your tightly held beliefs, evidenced by your lack of movement. Ultimately your advice to a person with ME regarding exercise is to do it. It comes with some weak qualifiers that would be sufficient for someone well who is perhaps unfit, but which is wholey insufficient for the signifant majority of people with ME, including those with mild to moderate cases. We arent talking about getting ill if you start to heavy, or 'over extend' as you put it above, we are talking about getting ill from the sort of exercise that someone cautious might consider really mild and safe. You preach That it will improve their 'wellness'. Evidence does not support your view.

    Appropriate and responsible responses to the feedback you've had would be to a) change your view, b) modify your view significantly and disclose what you might consider only potential risks and consequences on your blog, even if you still hold to your belief in exercise as a good idea. c) do b while you look into this area in a lot more depth before setting your mind firm on the subject.
    But what you do is continue to hold firmly to this belief that 'exercise is good for most people with me'...that's where you still are isn't it?
    Someone will follow your advise and will get a lot more I'll. More people than will get improved wellness. And it will be your fault because your not offering this advice blindly, you have been warned of the serious repercussions, (even if they are being careful) but continue to offer it without sufficient warning. I don't think that's good.
    peggy-sue and Tito like this.
  2. justy

    justy Senior Member

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    Oops sorry Alex - it can be so hard to make communication clear on message boards (and with our brains! although you seem to have a fine brain.)
    Three more signs for me to go back to bed for a good few days rest:
    1. waking up feeling like i've been battered and or got a terrible hangover.
    2. Feelings of unreality and depersonalisation - probably the way i see a part of brain fog.
    3. Confusion and a feeling of overload, eg last night i dished up the dinner for my family and then just stood and looked at them for a long time - my brain felt full and horrible and at the same time completely empty.
    This last year i've had periods with an almost clear head - what a marvellous feeling! The unreality feeling is so awful and has led to lots of anxiety - especially when out an about.

    I have to agree John, that whilst i applaud your efforts and willingness to join in the debates and add something to them, your exercise/activity advice is terrible. I am concerned that you are happy to have a worsening of symptoms for a few days from over activity, and that you feel this is only temporary - add another minor stressor tpo this situation and you could find yourself in a severe relapse - as i did after nearly 8-10 years of very mild i found myself in the severe/moderate category and only 4 years later slowly climbingup again. I don't know if i will ever get back to the level i was at before.

    All the best, Justy
    peggy-sue likes this.
  3. John H Wolfe

    John H Wolfe Senior Member

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    I quoted 5-10% of PWME as an estimate of the percentage for whom activity over and above what they already do (purely to survive), I was not referring to the whole of the severely affected demographic as I know, first hand, that many of these people can, and do, do more than the minimum - although I’m also aware that it’s all too easy for ‘payback’ to get the better of them if they’re not careful

    Totally depends on how responsive you are to what your body is able to manage, yoga can be very mild, and there’s no arbitrary length for a session, so to adjudge it to be unsustainable seems a little stubbornly obstructive/defeatist ~ two qualities that certainly do hinder recovery in some PWME

    It is pretty much exclusively the mid-moderate who attend, but not just the mild

    You’re quite right, however we are, as a species, pretty good by now at identifying threshold stress points on the basis of introspection, furthermore as PWME, we are that bit more attuned to what our bodies try to tell us :)

    Indeed. It’s likely to take months and years for PWME to get so attuned, but we’re all capable of both working these things out, and feeding this learning into proactive, progressive (in the grand scheme of things), sustainable (and by that virtue dynamic), plans that are an integral part of an integral approach to recovery

    Interesting, perhaps this doesn’t relate but I’ve just done a little research into breathing, and added some stuff on it both to my wellness guide (in the activity section, as it happens) and to my analysis of the possible causative processes in M.E. It relates to auto-hyperventilation (as opposed to psychological)

    This is a major problem, particularly if toxin release is involved (found that out for myself last weekend), however ‘small steps’ and maximum responsiveness should mitigate against OTT payback

    I don’t doubt you’re right, although I will say that my relapses have only come in the presence of alcohol and/or viral infection, exercise has been a constant throughout the last 10+ years of illness and even though I’ve engaged in some seriously unwise sporting ‘binges’, the worst that ever happened (outside of toxic release states) was that I felt rather ‘beat up’ for a few days afterwards

    For me, theoretically, and based upon what I’ve read, it may well be that there are two exertion thresholds:
    1. One that puts certain functional systems under stress in the short term (muscle repair, ATP replenishment etc) – which takes PWME a few days to recover from, where it would nominally take an individual just a few a day
    2. One that puts certain fundamental systems under stress (immune, autonomic etc)
    The level of, and gulf between, these threshold points will be an inverse function of (severity of illness + level of sedentarism + level of psychological discomfort involved in partaking in exercise/dread of payback)

    Interestingly, in a paper I read yesterday, perhaps counter-intuitively, the researchers seemed to find that whole body potassium levels (important in ATP ~ mitochondrial cell energy production among other things) was a positive function of resting in the subset of PWCFS with fatigue but no myalgia, but not in the PWME

    I wouldn’t be so bold as to affirm that all PWME have the exact same syndrome/single aetiology, however what I would say is that it’s a possibility, and that the manifest symptoms may differ thanks to differing conditions (genetic and environmental factors, as well as time and the psychology/physiology of the individual)

    That’s the nature of the beast; this may not apply to everyone on the spectrum, but it is my sincere belief that if we take a gentle, progressive, integral approach, such as the one outlined in my guide, we open up new possibilities in terms of ‘branching out’ over time ~ the days when we feel like grounded aircraft become fewer in number, our muscles feel less heavy/dull/achey, our heads become gradually clearer, we hold ourselves straighter, we breathe bigger lungfuls of air, we feel more alive by the day, our mind opens up to the possibility of a life being more wonderful and less like a chore..

    That’s interesting. I have found that irritability/emotionality are strong functions of my health too – if there’s one silver lining with M.E. it’s that it teaches us to be stoical eh! :)

    You should definitely find out because the guy should be sued, this guy is fuelling is part of the problem! Exercise need not be seen as this great satan, because there is such a wide spectrum; PWME get to the point where fear of payback and this notion of exercise as something they used to do in a former life/something only super-in-shape people on the TV do act as major obstacles to recovery (which, to my mind/knowledge, never occurs with the persistence of sedentary modes of living)

    Doesn’t take a rocket scientist to conceive of just how far apart gentle dorsal rotation/marching on the spot for a minute type exercises are from resistance training!

    If you felt exhausted at the time and this was over a prolonged period then it wouldn’t surprise me, aye, however until you pass that threshold point I am positive that it can do you no long term harm to be keeping reasonably active at the relevant capacity level, within sensible, responsive/dynamic, limits

    Absolutely spot on

    • Back becomes inflamed/achey
    • Wake with the 'hangover' Justy describes (may not involve pain but you feel like you've been hit by a train)
    • Find I have to take the stairs one at a time, then when I have to take them slowly, and if I get out of breath taking them (my level of fitness remains relatively good, even if my health does not, so for me these are telltale signs)
    • Pallor visibly changes, skin goes grey/translucent or ‘thin’ round eyes, blue rings around them
    • Legs go weak/numb
    • Head becomes inflamed (thick/dull/pressure sensation) and/or I get headaches
    • Feel like a ghost/outside your body somehow - akin to Justy's "feelings of unreality and depersonalisation"
    ..for me a lot of these things have more to do with sleep/nutrition than they do with exertion, however if I overextend myself it may contribute, particularly if I’m in a toxic release state

    I think you may have got the wrong end of the stick, nowhere in my guide to I advise anyone to exercise to the point where the payback lasts for several days - that’s just the reality those of us who extend ourselves beyond certain sensible thresholds

    You likely will if you tackle your anxiety and follow and integrative approach like mine :)
  4. justy

    justy Senior Member

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    I don't really know where to begin in responding to your post above - some of it was offensive and crass. I find it offensive that you judge me as being 'anxious' and that all i need to do is take an integrative approach like you and i will get better.

    You have NO knowledge of me or my illness and what i have and havent done over the years i have been ill to get better. Please dont make such sweeping statements about people and their health that you do not know. It is also offensive to me that you suggest that PWME in general may have a psychologoical problem with activity and that this may be making their illness worse or not allowing them to recover - this is pure psychobabble bullshit.

    Your remarks have stepped over a line here. Myself and others on this forum have stated that we do not agree with your approach and advice re exercise for PWME - and neither do the majority of CFS/M.E specialists. We have asked you to be careful in your 'guide to wellness' that others may read without a fuller picture of how easy it is to cause a worsening in their health by attempting what you consider 'easy' exercise such as yoga, swimming, walking and pilates. My issue is not that i believe that we should all be laying in bed all day doing nothing, but MOST PWME will do activity to a level they can manage and for the majority this will not include adding ANY exercise until they are substantially improved/recovered/well.
    Justy
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  5. CJB

    CJB Senior Member

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    Exercise?

    NO.

    :thumbdown:

    Please check here before you go any further with your recommendations. We no longer have to talk about exercise for PWME/CFS in hypothetical terms. We now have science.
  6. snowathlete

    snowathlete

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    I can well understand why Justy found this comment offensive.
    On another level, what your doing here is saying that people stay Sick at least in part because of their attitude and that, frankly, is a load of crap and I find it offensive too. We stay Sick because of a neurological disease. No amount of positive attitude makes a difference. On the contrary, adopting a false positive attitude and acting well when you are not (including exercise) will make you more sick.

    My guide to wellness: don't take John's advice.
    peggy-sue, Shell and justy like this.
  7. jace

    jace Off the fence

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    Funny guy, this John. He posts asking for feedback, and then gets highly defensive when feedback is given. Methinks it was praise, not feedback that he wanted.
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  8. Tito

    Tito Senior Member

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    My guide to unwellness: take John's advice.
  9. John H Wolfe

    John H Wolfe Senior Member

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    Do they say the same about putting on a pair of socks? Activity e.g. ‘home exercise’ can be very mild indeed, it needn’t put very much at risk at all

    I’m not sure you’ll find many top docs who recommend inertia for the full spectrum of PWME tbh

    1. “High impact exercise like jogging, and sports that place strain on the upper body like rowing/tennis/gymnastics are really best avoided”

    2. "Take care to give yourself adequate rest periods, for both your muscles to recover and so as to avoid ‘crashing’"

    To my mind being hit by a car isn’t the worst analogy re: relapses, in fact I feel it's rather apt!.. but feel free to suggest a more suitable alternative if one springs to mind

    Seated, gentle dorsal rotations? Really?

    Correct. Unless we’re on a downer, fresh air, sunlight, and mild, manageable activity, is, to my mind, absolutely fine in the vast majority of PWME so long as we’re sensible in the manner in which we go about it and responsive to feedback from our bodies; indeed I am absolutely convinced that it is an integral part of recovery, albeit one that should only be pursued once other pillars are in place - until someone shows me evidence that numbers PWME have gone into remission without engaging in any more activity than the raw essentials, this will likely remain my informed view

    It saddens me that:

    A) If that was clear you think I’d put rigid thinking before the greater good
    B) You genuinely believe that more PWME have something to lose than something to gain from activity well within their remit that keeps them the safe side of PEM systemic tolerance thresholds

    I don’t judge you as being anything my friend, you noted anxiety as an issue, and it is one which can hinder us (emotional stress + adrenal/hormonal impact = net energy loss)

    I said 'likely will if you do those things'.. because I believe, rightly or wrongly, that most of us have the capacity to go into remission at some stage. I was trying to deliver hope based upon this thematic, not judging you on a personal level

    For some, the fear factor associated with ‘payback’ is a preventative barrier to engaging in more activity. If, like me, you believe that activity is an integral step on the pathway to recovery then it stands to reason that you will believe that for some, therefore, attitudes of mind may prove prohibitive

    That’s no less than I have advised :)

    Does science show that all activity = PEM = relapse? If you could point me to accredited research that suggests this I’d be fascinated

    Some people do yes. Sorry if you find that offensive, and I can well understand why, we have an uphill battle convincing people it’s not ‘all in the mind’ etc, but the fact remains, some do.. I've seen it first hand

    Agreed

    Gee, that’s constructive! Hehe

    I’d always defend a sound proposition in this arena, in the interests of encouraging wellness, it has absolutely nothing to do with personal ideology/pride, it’s about dealing with peoples’ concerns and further elucidating precisely what value lies in a considered, bespoke design, integral approach

    If this was a cancer forum and I was advocating chemotherapy I’d take precisely the same tac ~ I do sincerely believe that we must be willing to fortify all four pillars if we wish to maximise wellness
  10. CJB

    CJB Senior Member

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    Watch the video, read the research and I'll then point you to threads where people relate their experiences in trying to keep their activity within their energy envelope. Lying in bed was too much for one.

    This research is not only accredited and replicated but it is being used to win disability claims and it is directly in response to your claims.
    peggy-sue likes this.
  11. John H Wolfe

    John H Wolfe Senior Member

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    Link me amigo

    That'd be an unfortunate soul in the 5-10% I spake of

    You sure it's not directly in response to things like non-adaptive GET, and "you look fine, there's nothing wrong with you!" type attitudes?

    I think of my approach as a 'middle way', kind of like 'pacing+'. Sure it won't be appropriate for the most severely affected, and like I say it's important to get the other pillars up before investing in this'n, but I'm positive that it's progressive advice for most, provided it's applied intelligently/diligently :)
  12. lansbergen

    lansbergen Senior Member

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    John H Wolfe. You claim we and us but you have no right to speak for me.

    I do not want to be associated with you and your guide to wellness.
    peggy-sue and ukxmrv like this.
  13. CJB

    CJB Senior Member

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    Here's the link again: http://forums.phoenixrising.me/inde...ab-me-cfs-alert-episode-32.18789/#post-285838

    Most everyone here has their own theory of why they're sick and they're working on a protocol to improve. You have every right to yours, but please don't presume to advise anyone else. If you truly want feedback, this is the place. Lots of smart people and many with advanced degrees in relevant fields who kindly share their time and knowledge and interpret research. I have yet to see one of them make any blanket recommendations about any protocol. They have learned how unique this disease presents in each individual.

    If you have found exercise beneficial, then please exercise. It is detrimental for many if not most and can result in a dramatic decrease in functioning that sometimes has never returned. The video explains the bio-functional reason for this.

    One more thing I want to add. While we may all have a diagnosis of ME or CFS, it is suspected there may be different disease processes still lumped together. What works for you may work because you are in a particular subset that doesn't relate to the rest.
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  14. CJB

    CJB Senior Member

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  15. Adster

    Adster Senior Member

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    Hi John H. Wolfe. I'm grateful that you are wanting to help people with this illness by putting together a guide. My feedback would be that much of the advice is far to simplified, even to the point of being possibly detrimental. Even bicarb, a fairly benign substance, can be detrimental to health if misused. I think all your points where supplementation are mentioned need to further researched and much expanded if they are to be included in a guide for patients. In it's current state, I think it's risky to advertise and link to it.
  16. madietodd

    madietodd Senior Member

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    I had mild CFS for probably 10 years, with gradual worsening over the past 15+ to moderate now. I cannot exercise. No matter what definition of exercise you use, it never improves my muscles over time, and at some point I crash from it. There are lots of people here whose ME/CFS is not severe, but I personally only know 2 members who can exercise. As all of the members known to me are intelligent and diligent, I think the problem is with your theory.
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  17. jace

    jace Off the fence

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    John H. Wolfe said
    And yet, up until recently, any time in sunlight caused me to crash badly. This year, I seem to be past that particular peculiarity, but that was the way of it for the last few years. I used to hope for cloudy days when I had to go out, and I have a couple of broad-brimmed hats as a legacy of that time.
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  18. John H Wolfe

    John H Wolfe Senior Member

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    I don't speak for you amigo, however I share certain experiences with you, as a fellow PWME


    Great story bro


    No-one is compelled to take my advice :)


    Not to a youtube clip with some random American woman, to some written evidence, preferably research papers/experiemental studies and the like. PEM is no big secret, but PEM as an inexorable result of activity over and above the basic level needed to function for all PWME, and all grades of PEM necessarily representing a markedly enhanced risk of relapse, is news to me!
    Blimey, I may be Western, and may be supporting a certain cause, but I'm no US diplomat, hold fire sport!..
    ..we’re all entitled to free speech, the sharing of ideas, and to give others our thoughts and advice. The means with which I have done this is very neutral, it’s a blog page, of which there are millions like it. People are free to pick and chose the advice they take, I am not forcing it on anyone, just putting it out there in the hope that it will help others to recover too :)
    If you read my guide you’ll note that it stresses the need for an individualised approach throughout, it doesn’t specify specific protocols but rather an integral framework intended to help PWME set about designing a personal protocol scheme for each of the 4+2 realms
    Highlighted the above as:
    1. Activity within the paramaters laid out in the guide/my responses on here will rarely result in dramatic PEM; naturally I accept that too much exercise can result in this
    2. PEM functionality impairment is often short lived and only goes as deep as tertiary symptoms, rather than acute fundamental systemic process impairment, although I am aware that it can lead to relapse
    This isn’t exactly news to me, as you’ll note from my extensive aetiological analysis
    One interesting finding is that for people with CFS without myalgia, total body potassium level (sodium/potassium electrolyte imbalance has been implicated in mitochondrial dysfunction) is positively correlated with resting. However this is not the case for M.E.
    Absolutely, but I believe that the framework I have designed is applicable for the vast majority of both healthy people, and PWME, if not certain specific subsets of both groups e.g. the most severely affected 5-10%
    Her complaint relates to practical feasibility, that is a matter for her/people who are ‘on her case’ so to speak/her representatives, to resolve between themselves. Yes it is important to get support though, particularly if, without it, you feel pushed into extending yourself beyond your ‘energy envelope’
    I accept that it needs developing further, however I have to bare in mind the above, re: protocol individualisation


    I am aware of that, however I revisited the content this morning and specified a (low) dosage based upon the recommendations of a few other people


    Most of them are based on research/recommendations of experts, and I am not aware of too many complications/interactions arising from such advice – although I have just picked up on the fact that certain probiotics may actually acidize the gut!


    Your concern is duly noted, but - beyond continuing to research/gain feedback and hence develop my methodology - what I will say is that I do encourage people to tailor the framework to suit their needs/understanding in the guide, and the disclaimer at the end makes it quite clear that people should take care in implementing any such regimes
    You cannot move?


    I’m sorry to hear that. See my comments re: having the other pillars firmly in place first e.g.

    • Hypoaldosteronism > Ischemia > Hypotension + muscular sensitivity
    • Kussmaul breathing > hypocapnia/muscular hypoxia
    • Acidosis-linked mitochondrial impairment
    • Inadequate nutritional support
    (see: my aetological analysis for further detail/context)

    Also, consider the role of physical/muscular deconditioning

    I don't know how many others you know, or what you class as exercise, but unless the sample is almost exclusively populated by the type of user who struggles even to use a computer (seems unlikely) I'd say something has been lost in translation

    Elevated sensory responses are part and parcel of M.E. for many of us, although I have yet to get round to researching any physiological processes in which they may induce a worsening of symptoms (outside of a neurologically mediated response to overstimulation)


    If light is the issue then I would advise wearing a UV visor or shades, and yes, hats – like the one pictured! If intensity is the issue then I would advise going outside in the morning or early evening rather than towards the middle of the day

    Beyond vitamin D, a healthy pallor/healthy skin is conducive to greater social immersion/activity in those of us mild-moderates who have the odd ‘feel ok but look like hell, think I’ll stay in’ day
    Thanks for the comments folks :)
  19. CJB

    CJB Senior Member

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    I'll give this one more shot.;) This is not some random woman on some youtube video.:D The video is an interview with researchers discussing their findings as it relates to PEM testing.:nerd: Watch it or not.:) Read the article accompanying it or not. :cautious: It contains references to published, peer-reviewed studies.:angel:

    As for Inester7's narrative.:ill: I think you missed the point.:aghhh: Her normal, every-day activity put her above her metabolic threshold.:cry: That was the point.:D Exercise on top of that is nothing but damaging to every organ in the body.:alien: Like I said, one last shot.:ninja: You can lead a horse to water.:thumbsup:

    Vaya con Dios, amigo y buena suerta.:balloons:
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  20. pollycbr125

    pollycbr125 Senior Member

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    the fact that the poll above indicates that 76.9 % of respondents did not think the guide offers good advice on balance just about says it all for me .
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