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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. Valentijn

    Valentijn Activity Level: 3

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    Ok, let's take a look at the "Activity" section of your protocol:
    Do you have a citation? I've seen no good research showing GET or other activity to aid in recovery, and plenty of research showing it doesn't help, and some showing that it's quite harmful. Pretty much every PWME I've spoken to finds any increase in activity to cause setbacks.
    Citation? Many people do stabilize activity levels before attempting GET (that's how it usually works in the clinics), and it is still harmful and not helpful for them.
    The sources cited are an article and a hypothesis. There seems to be no research demonstrating Rowe's hypothesis to be accurate. Furthermore, ME patients are rarely completely inactive except in the most severe cases when there is very little ability to move. It also does not follow that GET is the appropriate alternative to complete inactivity, even if complete inactivity did exist.
    I see no citation for Rowe advocating any of these treatments. Furthermore, many patients find the exercise-based therapies to be harmful, and many studies have shown them to be of no help in physical functioning. SSRI's also affect many patients badly.
    Citation? You seem to be suggesting that worsening symptoms should be ignored as a sign of illness, which is highly irresponsible given the damage that often results.
    Citation? I believe most research has disproven this hypothesis.
    The activities listed are not suited for moderate ME, which is still highly disabling. And even moderate ME patients will have priorities for their energy that have a more beneficial impact upon their lives - such as cooking dinner, going shopping, or even socializing. I also see no citation showing their effectiveness, and again, they are suggestions which many patients have found harmful.

    You link to http://www.iacfsme.org/CFSandExercise/tabid/103/Default.aspx in suggesting recumbant exercise, but have ignored much more important advice - that research has suggested that ME patients must remain under a certain heart rate to avoid triggering a pathological response. Subsets are also discussed, with the realization that while some cases more similar to fibromyalgia might be able to improve somewhat from exercise, and that others will suffer severe relapse. It seems inappropriate for you to give the same advice to both groups, especially since your advice is only potentially applicable at the very mild end of the spectrum and very harmful at the other end. That source also specifies that all symptoms should be gone in the morning, not after "12-24 hours" as you stated above.
    These calculations are likely over-simplistic and contradicted by actual research. They are recommending I get my heart rate up to over 140bpm, while the research indicates most ME patients need to stay between 90 and 110. 140 would be guaranteed to put me into a crash, and a bad OI day I'll be over 110 just sitting up.
    Do you have a citation that this is appropriate for ME patients? Sitting without my feet up for a length of time can cause extreme OI problems. Much as a sore back is unfortunate - and I do get one at times - lack of oxygen to my brain is far more unpleasant.
    I'm not going to argue about standing still really sucking, but lying down is necessary for many ME patients with OI issues. The alternative is called "passing out", and periodically laying down throughout the day can help prevent OI symptoms from becoming aggravated. Do you have any authority to cite for your assertion that lying down should be avoided.
    Citation?
    This may be good advice for people with simple OI problems uncomplicated by ME problems, but I have seen no research indicating it is useful for ME patients. Citation? My personal experience and what I've heard from other ME patients is that typical advice for training the body to compensate for OI does not work for us - or rather, it might work in the short term and then cause a crash due to the extra strain.
  2. John H Wolfe

    John H Wolfe Senior Member

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    Agree with/share the same position on everything you've written
  3. John H Wolfe

    John H Wolfe Senior Member

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  4. Valentijn

    Valentijn Activity Level: 3

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    I can't speak for Kina, but I started with searching for a line out of your protocol and found your foo.mp3 identity. Searching for foo.mp3 brought up your real youtube account, as well as "Jools" and your last name, which led to your proper first and last name. Which leads to both of your middle names, your real facebook and google+ pages, your parents names, and your home address.

    I hope you don't find any of this too creepy (we aren't stalkers), but anonymity on the internet is rather illusory, especially when you attach real photos to each account. Usually most of us wouldn't bother checking someone out, but people selling superficial remedies based on dodgy models of ME often have other dodginess which helps put their goals into perspective, and can help patients decide how trustworthy that person is.

    In your case there really is no ulterior motive or major deceptions. Maybe a typo in your protocol where you say that you have medical training. But your other internet activity does show a lack of understanding about ME, and indicates that you have not engaged as part of the ME community. It helps in understanding that you really don't understand the importance of the context of the psychological research, and that you aren't deliberately suggesting that ME is psychosomatic, even though you suggest some of the same treatments due to your misunderstandings.

    Your lack of engagement as a member of the ME community is your biggest problem. In addition to the impact it has on your assumptions about what you have read about ME, your lack of engagement is also somewhat offensive when you drop out of nowhere and start giving random advice. Many patients here have been ill for decades, and some have been researching in-depth for years and decades, and when you jump in and start giving a mixture of obvious and harmful advice, well - it makes it very hard to take you seriously.

    I think you do have very useful skills in the area of reading, writing, and communicating in general. But you need the knowledge and experience to back that up, before you give anyone else advice.
    Kina is a first and foremost a forum member. She is an unpaid volunteer who has ME, and is allowed to express her opinions even when they disagree with yours. Compared to most other forums I think you can see that this forum is not even remotely lawless - nor does it crack down on contrary and offensive opinions. The balance is that you get to tell us your opinions, and we get to tell you why you're wrong.
    Science doesn't require a specific degree, so much as a scientific approach to obtaining knowledge. Most of your claims in your protocol lack a scientific basis. Furthermore, most of us know more about specific areas of biology than our GPs do - and we know a lot more about it than you do. Not because we're smarter, but because we've been doing it for longer and usually with a bigger appreciation for scientific approach.
    I think it is relevant - it shows that you were very healthy quite recently. At the very least it also shows that you only recently became aware of and interested in the central symptom of ME (PEM).
    No one really cares about saying "PEM" versus "PENE". The problem is that your background and protocol show a complete lack of comprehension regarding how it affects our lives, and how PEM is triggered. An alternative title for your protocol could very well be "How to trigger PEM and OI difficulties in moderate ME patients".
    It's been said many times, from many people, and I've now very specifically detailed the problems in my earlier post. Your advice regarding PEM and OI is inappropriate for most ME patients, and may even be harmful.
    taniaaust1 likes this.
  5. John H Wolfe

    John H Wolfe Senior Member

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    I did start off with links to the theory side in the protocol but then decided it was best to keep the theory to the theory article, save making it any longer/complex (for ease of digestion, very important given the brief)

    None of the studies that show a percentage of patients treated improved count as 'good' ones in your estimation?

    I find that amazing. I've known quite a few who don't find that but then I suppose it depends on the individual, progression of the illness, and where their 'starting point' is in terms of activity increase

    Certainly it seems unlikely that increasing activity beyond that which is currently just about manageable will do anything other than cause PENE in the vast majority of cases, there is no disputing this

    Who said anything about complete? Rowe’s theory concerns relative not complete inactivity:

    “…factors—such as whether the individual rests or remains relatively active—modulate the
    response to a new stressor. For example, as has been demonstrated in experiments involving prolonged inactivity, reductions in plasma volume associated with long periods of bed rest would be expected to affect orthostatic tolerance … these changes in response to a new stressor could give rise to …further mechanical tension ... We hypothesize that this … contributing to further central sensitization. Central sensitization, in turn, could aggravate peripheral factors … The peripheral factors, central sensitization, and orthostatic intolerance would then contribute to further expression of CFS symptoms”

    I wouldn’t be so bold as to affirm what is the optimal intervention, but I am working towards it and believe (rightly or wrongly) that incrementing up activity as one enters recovery is perfectly appropriate (see what Rowe has to say above to understand part of why I believe this to be the case)

    In that case, allow me to assist you:

    “…other ways of addressing central sensitivity are not excluded from this interplay. For
    example, improving central sensitivity—through addressing autonomic symptoms with treatment of orthostatic intolerance [centred on enhanced water/salt intake and physical rehabilitation], or through improving central responses to stimuli via cognitive behavioral therapy, SSRI/SNRI medications, and anti-convulsant medications—might allow improved exercise and might improve the response to movement therapies [includes manual physical therapy and physical reconditioning]”

    I’m not keen on pharmacological things, many of us have drug sensitivity and I just don’t think putting chemicals in a body, let alone one that struggles to detox properly, is a terribly good idea. Hence I do not advocate their use but do list them as optional supportive elements, as appropriate
    As above, from Rowe as well as my own personal experience

    With physical therapies there is payback, unfortunately this is unavoidable on programs like Perrin’s, Rowe’s, and my own. Rowe started out advocating direct methods of nerve mobilisation when he started this research, he’s since suggested that indirect methods should be pursued first, and direct methods only to test for a positive response to improved toleration of mechanical tensioning

    I’m not sure whether they are ongoing themes with most PWME, but they are sporadic themes with many of us e.g. I sometimes wake hyperventilating and people with comorbid respiratory/sleep disorders experience related issues. If you know of any comprehensive related studies that give a better idea of what proportion of us are affected by such issues I would welcome such a contribution

    Good nutrition, doing physical things that are of practical/therapeutic nature, and socialisation are all part and parcel of my protocol – and at no point do I declare that patients should extend activities beyond their remit/at the expense of other therapeutic targets, or basic necessities for survival

    You’ll see I have included something on heart rate ceilings if you look carefully at my protocol..

    You’ll note the cautionary tone of my advice and that I make no direct prescriptions and leave it up to the individual to set limits that work for them

    Payback from (aerobic) exercise is not the same as payback from neural mobilisation techniques

    Your maximum heart rate is 230-280 bpm!?

    Of course people with extreme OI shouldn’t be using high stools, I’d have thought that was self explanatory?

    Rowe. One of the world’s leading experts on OI. Btw I have POTS so you need not lecture me on the potential for blacking out

    Thanks
  6. John H Wolfe

    John H Wolfe Senior Member

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    Nice work - flattered by the effort that clearly went into that!

    Like I've said before, my use of a pseudonym related to creating an account based on my stage name. Neither are an attempt to maintain anonymity

    Oops! Haha

    Performing an internet search doesn't make you an expert on me any more than it makes me right in my hypothesis. I've been a member of the 'ME/CFS Community' for many years (just not this one)

    Sorry, is there some unspoken gagging clause on new members of PR I don't know about? How curious

    No problem with that, just baffles me why some people get so rude/personal about it when that’s totally unnecessary, unprovoked, and counter-productive if they do truly wish to get a serious point across (rather than risking coming across as just fancying a bit of an anonymous internet rant at a perfect stranger who has only come here to share ideas/benefit people, and shown them no personal ill)

    How dare I entertain for a second that I could even come close to knowing enough about my own illness to post here, let alone suppose even for a second that my level of knowledge/conceptualisation is anything but infinitesimal in comparison to yours. Hehe

    If you re-read you’ll note there’s no inference that I only became aware of PEM recently, sorry, incorrect. I only experienced ‘full blown PEM’ linked relapse, e.g. major PENE, for the first time last summer. This is a totally different statement to your umpteenth either deliberate or rather careless misrepresentation
  7. Valentijn

    Valentijn Activity Level: 3

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    Sorry, doesn't work. Put in the citations, otherwise you're just blowing smoke.
    Nope. No objective improvements, lots of spin - you know, the sort of details you miss out on if you just read the abstract. If you believe otherwise, please cite the source and we can discuss it.
    Fascinating. Where did you meet them all, seeing as you haven't had therapy or engaged with online ME communities?

    How can you affirm ANY intervention? You can't cite to any research (versus articles) supporting anything you say about exercise. How about instead of you reinventing the wheel for your sole benefit, you take a look at the existing research and take a shot at coming up with something that might be useful for ME patients?
    And we just need to ignore the payback and keep doing it! Where have we heard that before?
    This is where you are having a severe disconnect from the reality of moderate ME. Doing any of those activities will come at the expense of other activities. This likely holds true for mild ME as well. We are using up all of our available energy in living. For moderate ME patients this means that making dinner may use up everything we have. For mild ME patients, this often means that working part time or full time uses up everything they have.
    Yes, that's where the link with the level calculator is suggesting something far in excess of 90-110. My resting heart rate is about 80 (absent certain OI issues), age 34 and the "Target Heart Rate 1" (lowest listed) comes up at 136-147. If this isn't the result you intend, then you need to make that much clearer.
    That's called "pacing". It is contradictory to GET, which you are advocating as well.
    You say the 12-24 hour advice applies to both "Manual physical therapy" and "exercise-based therapies".

    Your links of "good posture" indicate we should only sit with our feet down. It also says to avoid sitting as much as possible, which impractical advice for patients with PEM and OI.
    You have a serious aversion to citing sources. So far all I have is Rowe's hypothesis on a couple things, with no actual research studies.
  8. snowathlete

    snowathlete

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    Fantastic post!
  9. snowathlete

    snowathlete

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    John, it's not just the term BPS, your protocol/theory is full of language used by the BPS group, and includes much of the same advice that they promote. I'm not going to point it all out to you and help you change the language because its presence helps show it for what it is (I think it's already accurate language for your protocol) :)
    Valentijn likes this.
  10. snowathlete

    snowathlete

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    If you're comfortable saying - who exactly gave you these diagnoses and what were their qualifications, and experience with ME/CFS? What definition did they use to assess you for diagnosis?
  11. John H Wolfe

    John H Wolfe Senior Member

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    You're forgiven. Doesn't work for you but to date it's what's worked best in practice when introducing a select few people to the protocol 'properly'. The relevant citations I have gathered to date are within the hypothesis article, which serves as a reference section (linked to from the protocol) - in no way is this complete but it's still early days

    What do you mean I haven't had therapy? I haven't engaged with online ME communities? What on earth are you basing these statements on? An internet search!?

    I don't affirm any intervention (as gospel), I have suggested people take a look at my protocol. Simples.

    You propose to tell me my own business now? Hehe. You do make me chuckle

    Have done, but always open to fresh insights, so if you have any (seminal) sources on related matters I'd be interested to look into them

    Nope, not what I suggest

    This is one of the newest sections of the protocol, so I've just taken the opportunity to add a bit more explanation/caution so that this is as clear and as 'safe' as possible, without undermining the central brief

    I appreciate that there is not much room for manoeuvre so to speak in all but mild cases

    My goodness, thanks for pointing that out, you’re right it seems that’s not an appropriate tool for this article!

    I advocate what I believe to be an appropriate mix of improving nourishment/energy, ascertaining workable levels of activity, and pacing. If you are worried that I am advocating GET (too much) in my protocol please quote the relevant excerpts and I will be better able to respond to your concerns

    In terms of signs of SNS excitement yes. If PENE (broader than SNS effects) extends beyond 24 hours then you are not just sensitising an important system but also exhausting yourself. Clearly I need to develop this section carefully/more fully going forward

    I’ll be sure to add another addendum, thanks for pointing that out
  12. John H Wolfe

    John H Wolfe Senior Member

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    Helpful, thanks
  13. Kina

    Kina Moderation Team Lead

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    Moderator Notice.

    This thread is being closed for time-being.

    After we have gone through to remove any personal attacks based on the following, it will be reopened:

    pyramid resized 2.png

    Anything that is a direct personal attack will be removed based on what is outlined in red.

    As a reminder:


    taniaaust1 and August59 like this.
  14. Kina

    Kina Moderation Team Lead

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    This thread is now open.

    Please refrain from personal attacks and report any rule breaches. :)
    August59 likes this.
  15. John H Wolfe

    John H Wolfe Senior Member

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    I am interested to see what fellow members of the ME/CFS community make of the article that embodies this layman's attempt to better understand some of the processes that may be involved in the condition

    In sharing this, and inviting constructive suggestions/feedback and discussion, I hope to benefit from your experience, insight and ideas so as I/we may better understand our illness


    I appreciate that there is a lot of text to read and technical jargon/concepts to digest, hold onto, and make links between, so here is an abridged version of my current working hypothesis:

    The main disease process(es) of ME/CFS relates to background peripheral nerve sensitivity associated with idiosyncratic tensioning, strain or damage of these nerves ~ leading to 'sensitisation': Neural Hyper-Sensitivity Syndrome (NHSS)

    'Sensitisation' in this regard is the 'winding up' of the central and sympathetic nervous systems by (increasingly) 'noxious' sensory signalling from these (increasingly) sensitised peripheral nerves. This gives rise to neurological disorder under certain conditions e.g. sufficiently serious exposure/reaction/adaptation to various stimuli or 'stressors'

    Unless this is corrected, over time neuroendocrine (hormonal) and neuroimmune abnormalities emerge/are worsened e.g. allergies, sensitivities, under/over active immune responses to infectious agents, and autoimmune responses to things like 5-HT, EBV, HERVs, H. Pylori

    The central and peripheral effects of all of the above feed back into (further) neurogenic sensitisation. This chain of relations may provide something of an intuitive explanation for the clinically inexplicable, and seemingly inescapable, downward spiral in health and functioning experienced by PWME as/when they first become ill
  16. overtrain

    overtrain Medical Mafia needs to die via this virus.

    Counting physical toil across the millennium of human history, why now nerves fail on us, and are, should this hypothesis pan out, failing us in clusters, e.g., Tahoe?

    How does the hypothesis account for those previously always healthy, ate excellent nutritious food, exercised intelligently, and otherwise had physical, mental, environmental stresses under wraps? Then, for all intents and purposes, died? Or are, more accurately, now Zombies?
    Valentijn likes this.
  17. John H Wolfe

    John H Wolfe Senior Member

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    Essentially I consider sources of neuroinflammation (particularly chronic, including environmental ~ which may relate to clusters) to be risk factors

    We have young people who are active now more than ever (influences spinal development), and yet we have adolescents and adults with desk bound sedentary lifestyles (influences nerve tension). This is one realm within which peripheral neural sensitisation may have chronic central sensitising effects, which I associate with neuroinflammation, and ME/CFS by extension

    Principally genetic and behavioural/postural vulnerabilities represent the core theoretical aetiology - sources of chronic neural sensitisation. Add to that other pressures e.g. viral/bacterial/toxic insult and you have the potential for uprated inflammatory responsiveness and autoimmunity in the context of pre-existing central sensitisation, with existing neuroendocrine and autonomic impacts

    These responses aren't very comprehensive but hopefully it will resonate better with a wide variety of PWME once I've finished putting it together :) To give you an idea of all the elements I believe are involved, my discussion headings thus far are:

    Neurogenic sensitisation (probably in most cases)
    Central sensitisation (almost definitely in all cases)
    Infectious agents (not in all cases)

    Inflammation (all cases)

    HPA/ANS dysfunction (probably in all cases)
    Genes (probably in all cases)
    Mitochondrial dysfunction (probably in all cases)
  18. August59

    August59 Daughters High School Graduation

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    I hope this study will have been brought to Dr. Lipkin and CFI Initiative when they get around to studying the saliva samples.

    As usual Alex, Thanks for the very good information.
  19. John H Wolfe

    John H Wolfe Senior Member

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    Hi, I'm going to reply here as it would be taking things a bit off topic in the other thread (doesn't really relate to risk of giving ME/CFS to a loved one)

    Thank you that is indeed interesting:

    "exaggerated neuroinflammation, sickness behaviour, depressive-like behaviour and cognitive deficits" ~ I steer clear of depressive behaviour but touch on each of the other elements in relation to microglia in my article :)

    I see. I wonder, have you been examined by an osteopath?

    Just to be clear on my current thinking (appreciate I am not always too clear when rambling on about my various 'ideas'):

    Dorsal defects are but one possible source of neurogenic sensitisation, in turn but one (if perhaps principal in ME/CFS) possible mechanism for chronic neural sensitisation, which in turn is but one (if perhaps principal in ME/CFS) possible source of neurotoxicity/neuroinflammation, which is but one (if perhaps principal in ME/CFS) pathological realm associated with the condition

    Cool. When I talk about posture I refer mainly to Rowe's principals of degrees of ankle and hip flexion, as well as neck posture, in the context of possible chronic neuromuscular strain ~ tucked feet inducing ankle flexion, and more than 70 degrees of hip flexion (essentially any angle beyond a slightly reclined car seat - a normal chair would be beyond this and hence potentially strain inducing)

    Nocturnal posture may also be very important, perhaps even more so (given the problems we tend to have with un-refreshing sleep ~ glutamate vs. GABA + < serotonin + < cortisol issues)
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    No - never had cause to, and I am 60!

    I gather that you are talking about hypermobility. I don't have any evidence of that either. I also sleep pretty well after switching to a gluten-free, low-sugar, low-grain diet plus certain supplements, albeit with a little help from mild sedatives. My own feeling is that my ME originates in the gut, especially as I had IBS on and off for decades before, and especially bad just prior to developing ME, plus the many benefits experienced from the new diet.

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