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

Does this theory seem plausible?

  • Yes

    Votes: 9 23.7%
  • Didn't read it

    Votes: 5 13.2%
  • Not sure I fully understand it

    Votes: 5 13.2%
  • No

    Votes: 19 50.0%

  • Total voters
    38

John H Wolfe

Senior Member
Messages
220
Location
London
Most docs are not willing to practice inductive reasoning. They want to deduce everything from their medical textbooks or big pharma's ideas of what constitutes illness. Big pharma generally does not even talk about hormones
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! :)
 
Messages
15,786
This seems more likely/common - often a function of things like distinct OI profiles, mitochondrial profiles, myalgia/allodynia/deconditioning I'd have thought
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.
 

John H Wolfe

Senior Member
Messages
220
Location
London
If this is a protocol for all of these groups
It's not, it's for PWME (ME/CFS) e.g. as outlined in the introduction in the hypothesis article

And if you really think all of those definitions are the same
Not what I said, note the word "further"

What sorts of pain have you experienced?
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)

Can you describe your PEM triggers and symptoms
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 your self-diagnosis plus confirmation from a UK clinic is not useful
I’m afraid I don’t post here to satisfy your criteria for what is ‘useful’, I was answering a question candidly

Have you been receiving CBT/GET from a clinic?
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)
 
Messages
15,786
Perhaps you could expand upon what you mean by this - your comment doesn’t follow from mine
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.
I’m not sure where you got this ‘sleeping less’ thing from? I advocate avoiding oversleeping in my protocol, which is different (subjective, and relative, rather than absolute)
No one is oversleeping. You are giving advice that is completely inapplicable to ME patients.
Surely you can see that we all benefit from support, advice, advocacy etc in various ways/to varying degrees.
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.
Granted some input is more/less helpful than others but to suggest that everyone who’s ever recovered has done so completely independently is grossly mistaken. Most have the capacity for (fairly) independent recovery however, undoubtedly – part of the pitch/aim of my protocol is to help folks get themselves onto near enough optimal trajectories for recovery, mostly it's up to them to ensure the conditions are right for remission/recovery
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.
Perhaps you’d care to substantiate that conclusion?
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.
 

John H Wolfe

Senior Member
Messages
220
Location
London
I would say I've done everything you've done. I got no improvement from coq10 and just got 'wired' from d-ribose, but I'm no better
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

Its a comprehensive list but I'm sure many in the UK can say the same as me
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
 

Enid

Senior Member
Messages
3,309
Location
UK
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 ???).
 

John H Wolfe

Senior Member
Messages
220
Location
London
Lot of us are doing the 23 and me testing and trying to predict best combinations of vitamins and minerals based on genetic SNP's. It's not quite a perfect science yet, but heading in the right direction. There is a seperate forum below to peruse that might be of interest.

https://www.23andme.com/
Oh right, didn't realise SNPs stood for that, thanks. Sounds interesting aye, a nice development in the tailored nutrition stakes :)
 
Messages
15,786
It's not, it's for PWME (ME/CFS) e.g. as outlined in the introduction in the hypothesis article
You also said the definition used doesn't matter when it comes to following your advice.
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
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.
(as I didn’t really have any unhelpful attitudes/beliefs that were holding me back)
Neither does anyone else, making your guide rather useless.
 
Messages
15,786
You don't believe these play a role in the severely affected or those with fibro?
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.
 

John H Wolfe

Senior Member
Messages
220
Location
London
As for forcing myself to stay in bed during the night thats another thing, yes I do - I am sorely tempted to get up but know it won't do me any good, my limbs need to rest too
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)
 

John H Wolfe

Senior Member
Messages
220
Location
London
You're suggesting that pacing isn't sufficient and perhaps even harmful in the long run
Nope

There is no need to increase activity beyond what we do by pacing
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

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?
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
 

John H Wolfe

Senior Member
Messages
220
Location
London
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 ???)
I'm sorry I don't quite follow what it is you are saying/asking exactly?
 

John H Wolfe

Senior Member
Messages
220
Location
London
Um, you've diagnosed yourself with ME based on a single possible episode of PEM after playing tennis for hours
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

And if you do turn out to have ME, you have an extremely mild case of it
If? Since when is it legitimate/acceptable to call someone elses' personal health and history of health into question?
 

John H Wolfe

Senior Member
Messages
220
Location
London
Pain and deconditioning isn't stopping anyone from being able to walk across the room
Are you oblivious to the folks who are indefinitely bedbound? See if they agree..

the effects of deconditioning are extremely mild compared to the other issues, if it is present at all
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