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Wolfe Hypothesis ~ Key causative processes involved in CFS/CFIDS/M.E.

Discussion in 'General ME/CFS Discussion' started by John H Wolfe, Sep 13, 2012.

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Does this theory seem plausible?

  1. Yes

    9 vote(s)
    24.3%
  2. Didn't read it

    5 vote(s)
    13.5%
  3. Not sure I fully understand it

    5 vote(s)
    13.5%
  4. No

    18 vote(s)
    48.6%
  1. John H Wolfe

    John H Wolfe Senior Member

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    Agreed, it's an arse but them's the breaks, which is why I think it's up to the rest of us to pool experience/knowledge/ideas and (start to) put the pieces together ourselves! :)
     
  2. Valentijn

    Valentijn Activity Level: 3

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    You are completely off base with the suggestion that pain, hypersensitivity to pain, or deconditioning are stopping anyone from walking across the room.

    You really have no idea what ME/CFS is.
     
    Purple likes this.
  3. John H Wolfe

    John H Wolfe Senior Member

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    I'm not sure where that came from, I don't recall suggesting that PWME try to sleep/get back to sleep for the hell of it?
     
  4. Jarod

    Jarod Senior Member

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    planet earth
  5. John H Wolfe

    John H Wolfe Senior Member

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    It's not, it's for PWME (ME/CFS) e.g. as outlined in the introduction in the hypothesis article

    Not what I said, note the word "further"

    I've been lucky in that the only acute pain I've had related to very rare migraines, sporadic sharp chest pains, somewhat seasonal periods of (mostly morning) headaches and the only persistent chronic pain was/is low grade myalgia mostly limited to the upper back. Have also had more general persistent broader muscular and abdominal ‘discomfort’ (wouldn’t call either ‘pain’ as such)

    I used to tolerate exercise fairly well, relatively speaking – I would exercise sporadically and just feel like I’d been hit by a train for a day or so and then have achey muscles for a day or so, with somewhat depressed energy levels throughout

    Since my latest relapse, and commencing Perrin Technique manual lymphatic drainage, having had a break from sport for about 6 months I attempted to play social tennis for a couple of hours one day, felt typically beat up afterwards - so nothing new, then played again 2 days later, and this sparked a new level of PEM I hadn’t experienced before (it’s part of what convinced me I probably did have ME/CFS). I felt sick to my core, like nautious but not relating to the stomach, difficult to describe but the experience made me feel awful and floored me – I was pretty much bed bound for a week (and I've never been bed bound really, outside of the odd particularly harsh viral infection)

    I’m afraid I don’t post here to satisfy your criteria for what is ‘useful’, I was answering a question candidly

    Nope, although I did try NLP/CBT to appease my mother at one point, and found it offered/reinforced some valuable lessons but did little to improve my situation personally (as I didn’t really have any unhelpful attitudes/beliefs that were holding me back)
     
  6. Valentijn

    Valentijn Activity Level: 3

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    You're suggesting that pacing isn't sufficient and perhaps even harmful in the long run, with the alternative being your version of GET. No one here is doing less that they're safely capable of. There is no need to increase activity beyond what we do by pacing. We are not underactive.
    No one is oversleeping. You are giving advice that is completely inapplicable to ME patients.
    Depends on who you're talking to. Seeing as we aren't a bunch of idiots suffering from fatigue, your "advice" varies between obvious and completely inappropriate.
    Aside from your GET advocacy and the misapprehensions likely to be caused by your focus on trite changes in lifestyle and a positive attitude, your input brings nothing new to the table, and is unlikely to be helpful, especially while GET, lifestyle, and attitude feature so heavily in your presumptions.

    Tell me - how the hell do you get from a hypothesis that features viral theories to a treatment that focuses on thinking happy thoughts and becoming more active? It's a typical part of the CBT spiel to refrain from challenging the patients' "false" beliefs about being ill, while still directing them into GET and overcoming "avoidant" behavior. Your spiel is completely typical of that approach, and just as worthless as when the professionals do it.
    We do not need GET. We are not somehow holding ourselves back from wellness by pacing instead of engaging in incremental increases in activity in any form. Your guide will never be appropriate or acceptable while it relies upon the premise that increased activity is anyway helpful for ME patients.
     
  7. John H Wolfe

    John H Wolfe Senior Member

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    I can imagine d-ribose making one wired under certain circumstances aye, which is why I feel it's important to take an integrative approach e.g. correcting for SNS sensitisation, nutritional imbalances etc etc in combination with boosting mitochondrial energy

    No doubt, but I should point out that my response to Kina was what has been particularly, patently beneficial for me personally. There is a good deal more to PART VII, and indeed the protocol which it is largely based upon it, than the points I mentioned in that post
     
  8. Enid

    Enid Senior Member

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    Not much of a clue yet various theories until the damage done to the Immune system is unravelled - viral or bacterial in origin probably (not much stress there then ???).
     
  9. John H Wolfe

    John H Wolfe Senior Member

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    You don't believe these play a role in the severely affected or those with fibro?

    Thanks for that, constructive criticism at it's finest! :thumbsup:
     
  10. John H Wolfe

    John H Wolfe Senior Member

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    Oh right, didn't realise SNPs stood for that, thanks. Sounds interesting aye, a nice development in the tailored nutrition stakes :)
     
    Jarod likes this.
  11. Valentijn

    Valentijn Activity Level: 3

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    You also said the definition used doesn't matter when it comes to following your advice.
    Um, you've diagnosed yourself with ME based on a single possible episode of PEM after playing tennis for hours? While you might be correct, you should realize that PEM is hitting most ME patients far more often. And if you do turn out to have ME, you have an extremely mild case of it - mild enough that Oxford is the only criteria you would satisfy, since even Fukuda requires a certain level of disability.
    Neither does anyone else, making your guide rather useless.
     
    SOC likes this.
  12. Valentijn

    Valentijn Activity Level: 3

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    Pain and deconditioning isn't stopping anyone from being able to walk across the room. Many of us put up with quite a bit of pain while doing various essential activities. And you really need to accept that deconditioning is not a part of the illness, and the effects of deconditioning are extremely mild compared to the other issues, if it is present at all.
     
  13. John H Wolfe

    John H Wolfe Senior Member

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    Ah yes; I usually find that if I wake I cannot get back to sleep unless I'm really tired and it's still really dark/quiet, or I get half back to sleep and then feel even worse upon finally getting up!

    In such circumstances I find it most helpful to stay relaxed, maybe empty bladder and replenish water/salt (kept by bed), and just allow the body (apart from the brain/mind) to get some more (much needed) restorative rest by staying put in bed without either allowing myself to think too much or indeed attempting to get back to sleep

    I look upon these moments as an opportunity to practise relaxation and diaphragmatic breathing and although it's hardly ideal I am just happy that when I finally rise I feel much better than I would were I to attempt to get back to sleep and safe in the knowledge that I've increased, not decreased, the chances of a decent night's sleep the following night :)

    (this is not advice as such, it's just best practice for me personally, relating to what you said about staying put to rest limbs)
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    John H Wolfe

    Sorry, it is hard to take someone seriously as an ME/CFS researcher if you don't know the meaning of SNPs!

    Sushi
     
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  15. John H Wolfe

    John H Wolfe Senior Member

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    Nope

    I suppose that depends upon your perspective, and what is done by individuals who pace themselves, but broadly speaking I do not disagree in principal - there has been no suggestion made anywhere that what any particular group do significantly less than would appear optimal, it's just that some patients don't engage in activity that might help reduce neural sensitisation effects (that I believe are central to the illness), or don't engage in them to a sufficient degree/with sufficient regularity. For me it's about smart activity, not simply enough activity

    Antiviral therapy is a target for treatment in specific cases, with mixed efficacy. My protocol is more of a generalisable self-help guide – not excluding pharmacological avenues for treatment but not focusing too much on them as I do believe that in most cases nature has furnished us with everything we need in order to be able to recover ourselves
     
  16. John H Wolfe

    John H Wolfe Senior Member

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    I'm sorry I don't quite follow what it is you are saying/asking exactly?
     
  17. John H Wolfe

    John H Wolfe Senior Member

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    Nope - up until that point full blooded PEM (e.g. PEM induced acute relapse) is the one thing commonly associated with ME/CFS that I didn't feel I had necessarily experienced

    If? Since when is it legitimate/acceptable to call someone elses' personal health and history of health into question?
     
  18. Valentijn

    Valentijn Activity Level: 3

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    :confused:
     
    snowathlete likes this.
  19. John H Wolfe

    John H Wolfe Senior Member

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    Are you oblivious to the folks who are indefinitely bedbound? See if they agree..

    Indeed deconditioning is not the be all and end all and other issues may indeed eclipse it in some cases, however if Rowe's correct re: neural sensitisation, then associated inertia is in large part responsible for many of those issues
     
  20. John H Wolfe

    John H Wolfe Senior Member

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    SNPs feature a couple of times in my article - I just wasn't aware of the Acronym

    Thanks
     

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