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

[Valentijn]

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

I'm not calling your health into question, but I do think your symptoms, such as extremely mild or nonexistant PEM make a diagnosis of ME questionable according to the CCC and ICC which require it is a criterion. I also think "Aggressive, can’t stop moving" is not a symptom typically associated with ME, and most of us would find it impossible to play even a couple minutes of tennis.

 

[John H Wolfe]

No knowledge of the community or our experiences as ME patients.

Say what? You presume an awful lot..

 

[SOC]

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)

That doesn't sound like PEM. You might have had exercise intolerance, which is documented in a number of conditions. Perhaps you overexercised for your current level of fitness? PEM is an entirely different experience as anyone here who was athletic before becoming ill with ME will tell you.

Your program might work for people who injudiciously exercise for their level of fitness, especially if they became deconditioned while recovering from an illness or injury.

The Oxford Definition includes most people with some form of persistent fatigue. Because it is so ridiculously broad, by it's very nature it includes people for whom the same treatment is not going to be effective. It's great your theory works for you. It's unlikely to work for everyone under the broad umbrella of the Oxford Definition. It's particularly unlikely to work for people with immune dysfunction (including autoimmune disorders), chronic infections, and PEM (as opposed to exercise intolerance or deconditioning).

There may be a market somewhere for your theory, but it's not among ME patients. You would serve your goal better by finding a community to whom your theory applies. Fatigue is a symptom of many conditions, so there's a big market out there of people who just need better nutrition and careful management of their increasing physical ability. You might try rehab groups to find people who are recovering from surgery or accidents and need reconditioning. Granted, you might face some competition from rehabilitation professionals with medical training, but there's still likely to be a niche for you.

If you want to sell your theory to this community, you need to do a lot more research. Read some of the scientific papers written by medical researchers, not psychologists and psychiatrists. You would particularly gain from reading the work of Dr Nancy Klimas, and the Pacific Fatigue Lab group. There's also some spectacular work coming out of Australia.

Fellow community members:
Let's give John a hand here and help him get up to speed on the research. Please list in this thread the researchers whose work you think will help John get a better handle on ME beyond just the "fatigue" aspect. These conversations will be much more effective if we are all fully educated. Otherwise we are wasting time talking apples and oranges.

John H Wolfe: Once you're up to speed on the current biomedical research, we can have an interesting conversation about how you can help us with ME by the ICC or CCC definition which is what most of us here have.

 

[Valentijn]

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

I'd bet pain is the issue keeping them bedbound in exactly 0.0% of cases. It's muscles not functioning and possibly severe orthostatic intolerance.

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

Deconditioning is not eclipsed by other issues in "some" cases - it's eclipsed by other issues in ALL cases.

 

[John H Wolfe]

I do think your symptoms make a diagnosis of ME questionable

I don't recall asking for your impression on the mater of my diagnosis?

..or function in a profession such as "Health and wellness coach"

I do not practice professionally, everything I have done/everyone I have helped to date has been for free

 

[maryb]

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

John I'm sure you don't mean it but you know it does sound a little, well how can I put it? not quite patronising?
I really don't know.....
I am not a stupid person, I was considered quite bright before ME struck! have a MSc in psychology and an advanced hypnotherapy qualification - I only tell you that so that maybe you'll understand that whilst we are fumbling in the fog of ME most of us are still well read and automatically know how to do the right things to relax especially when one can't sleep - I do self hypnosis, count sheep etc etc.. let me count the ways!!!!

In my life in various situations I've seen people make the mistake of assuming others know nothing or less than they do when the opposite is true - beware on this forum super bright minds are in abundance.(I wasn't counting myself in that)

 

[John H Wolfe]

Perhaps you overexercised for your current level of fitness?

Nope, my level of fitness has remained fairly good throughout my illness (I was extremely fit prior to onset and continued to play sport and to exercise [often unwisely/too much] from time to time)

It's great your theory works for you. It's unlikely to work for everyone under the broad umbrella of the Oxford Definition

I do not disagree, but then I’m not the one whose discussed/included such broad definitions..

There may be a market somewhere for your theory, but it's not among ME patients

The fact you’re conflating my theory with my protocol is quite telling. I suggest you actually read my article before making such bold, presumptious and frankly rather insulting/misguided claims

 

[John H Wolfe]

I am not a stupid person, I was considered quite bright before ME struck!

Like I said, it's not advice, it's just a reflection on what you said. In no way is it patronising/condescending as it's not directed at you in an instructive sense, just sharing what I've noticed/what works for me

 

[Valentijn]

Fellow community members:
Let's give John a hand here and help him get up to speed on the research. Please list in this thread the researchers whose work you think will help John get a better handle on ME beyond just the "fatigue" aspect. These conversations will be much more effective if we are all fully educated. Otherwise we are wasting time talking apples and oranges.

https://cfids-cab.org/cfs-inform/Exercise/vanness.etal03.pdf
http://online.liebertpub.com/doi/abs/10.1089/jwh.2009.1507
http://iv.iiarjournals.org/content/19/2/387.full.pdf+html
http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8986.2010.00978.x/full
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02405.x/full

http://www.meassociation.org.uk/wp-.../Fall2011-Kindlon-Harms-paper-59-111-copy.pdf

 

[Valentijn]

I don't recall asking for your impression on the mater of my diagnosis? Do you not understand that to stray down that road uninvited is entirely inappropriate behaviour?

If you came here as a patient looking for advice, I would have no problem with whatever you think your diagnosis is - though in the case of likely misdiagnosis it's a good idea to seek further investigation.

But you partially rely upon your experience as a supposed ME patient to sell your theory - and your experience of ME is very different from most of ours. I think it should be obvious that your diagnosis and your experience of fatigue is quite relevant to whether or not your experiences (and theories based upon them) are applicable to the rest of us.

 

[Sushi]

John H Wolfe

SOC wrote:

@John H Wolfe: Once you're up to speed on the current biomedical research, we can have an interesting conversation about how you can help us with ME by the ICC or CCC definition which is what most of us here have. ​

​

Very much agree! As long as you are using criteria which are meaningless to most of us here, this conversation will go in circles.​

How about studying the ICC and rethinking your hypotheses?​

Sushi​

 

[Sushi]

John H Wolfe

Here is another interesting one:

http://iv.iiarjournals.org/content/27/2/177.full.pdf+html

 

[maryb]

Like I said, it's not advice, it's just a reflection on what you said. In no way is it patronising/condescending as it's not directed at you in an instructive sense, just sharing what I've noticed/what works for me

okay we'll leave it there....

 

[Sushi]

John H Wolfe

And while we are at it...it does not inspire confidence for someone presenting himself as a researcher to name his or her hypothesis after him or herself--even if using a pseudonym! Or to put testimonials in their signature:

Wolfe Hypothesis | Cort Johnson: "The best research summary I have ever seen"

This rings immediate alarm bells, and you are off to a bad start before you even begin to discuss your theories. Members here have deeply embedded sensors--they have been "had" too many times not to be suspicious.

Salesmen do this, not researchers.

Sushi

 

[SOC]

The fact you’re conflating my theory with my protocol is quite telling. I suggest you actually read my article before making such bold, presumptious and frankly rather insulting/misguided claims

Now who is making assumptions? I did indeed read your article. I found it a condescending reiteration of the obvious and lacking in understanding of the nature and severity of the illness. It is basic good health advice that is available all over the Internet, applies to everyone and has no more benefit to PWME than to the average person. It also lacks information about established medical treatments for known ME symptoms, which is a major disservice to your proposed audience. The message that a serious neuroimmune illness can be treated with "healthy living" rather than appropriate medical care is what I find presumptuous and misguided. Take your message to a cancer forum and see what kind of response you get. After all, they benefit from healthful living practices and suffer from fatigue, too.

Maybe it's because I'm a scientific researcher (or was before ME), but I expect references to solid scientific research to back up the kind of recommendations you make for PWME in your protocol. I also expect people who presume to advise other people on serious health issues to review and reference all the literature, not pick and choose the parts that suit their personal theory. Your "conceptual model" includes references to some ME/CFS researchers, but lacks reference to or even acknowledgement of a substantial amount biomedical research into ME.

Yes, I did say "theory" when I should have said "protocol", but my point remains the same. I suffer from a common cognitive dysfunction in ME -- word finding. It's a part of my disability -- you needn't take it personally.

I did like this part of your protocol:

Going beyond a level 1 heart rate (50-60% of your maximum potential heart rate) is to be avoided at all stages of recovery. Here is a handy ‘level’ calculator and here is further detail re: where to draw the line and why

It would benefit from acknowledgement that many of us with ME (not the symptom "chronic fatigue") achieve 50-60% of our potential maximum heart rate sitting in a chair, so that activities of daily living such as dressing, showering, and cooking put us well over that "always to be avoided" level. That suggests that you might be lacking an understanding of the way ME is manifested in many patients.

 

[lansbergen]

Why do you use the name John H. Wolfe, VMD, PhD who is a researcher at The Wistar Institute?

 

[Undisclosed]

Thank you for your answers John. I think it's important to pursue things when one has questions.

John H Wolfe said:
I’ve been receiving Perrin Technique manual lymphatic drainage for just over a year, and started pursuing dietary interventions e.g. my leaky gut protocol, around the time I started to put the ME/CFS wellness protocol together last autumn

I can't really say that I am close to being convinced that the Perrin Technique is a valid treatment for ME/CFS. I have read where it seems to work for some and where it doesn't which maybe suggests a subset that responds. I just find his theory re: lymphatic drainage to be faulty and the research doesn't have enough subjects. I also question research that is aimed at making money in the end. I really can't say much though because I haven't participated in this technique.

Kina said: ↑
I am just curious, why do you use a pseudonym?

I made the blog/youtube channel as I’ve been intending to do put together an actor’s showreel for some time (planned and cast a few short films to this end) and chose John H Wolfe as my stage name. I added the health research to the blog out of convenience so I’d have everything blog-like in one place

I do believe that people would take you more seriously if you chose not to hide behind a stage-name which is why I asked. I suppose there are issues around privacy. Just as an aside, if you are trying to keep your real name private, it's quite easy to find what it is with a simple search.

Kina said: ↑
I am still under the impression that you have cobbled together research on ME/CFS

If you’d like to suggest an alternative approach to gaining an understanding of/discussing/presenting the processes that may be involved in pathogenesis please feel free..

You have presented the processes that you believe are related to pathogenesis but I just can't get my head around your hypothesis and/or theory and I am still not clear what it is. It's like here are all the possible causes of ME/CFS and then you suggest a protocol. It's like cobbling together all the thousands of possible causes of cancer and then offering a protocol. It doesn't really get to the root of anything until the hypothesis is clear.

Kina said: ↑
Your protocol involves nothing new

I don’t remember ever having claimed that its constituent elements are particularly groundbreaking or cutting edge? It’s an amalgamation of advice/’expertise’ that I feel will benefit PWME, given my understanding of the illness, that is all

I never said that you claimed any of the sort. I do believe amalgamating (cobbling together) all the research actually muddies the waters. Much of the research is targeted at burnt-out, stressed, and tired people, or aimed at people with depression. For research to be relevant and valid, it must be about people with ME with a clearly defined criteria and it must rule out those who do not have ME. Much of the research is very poor in this respect. I would look at the research you are including and throw out all the dodgy stuff that doesn't include subjects selected via the CCC or ICC. If you want to have a hypothesis or theory about people with ME/CFS, you need to make sure it is about people with ME/CFS and not people with fatigue, or burnt-out or stressed out, or eating badly enough to make them sick. Right now the way it is, your hypothesis/theory and protocol is aimed a very heterogeneous population.

Kina said: ↑
seems to be aimed mostly at lifestyle improvements

Would you rather I was pushing a particular drug? My understanding of the illness simply leads me to make the suggestions I do, that many of them can be positively influenced by (largely simple/free) lifestyle improvements should be a cause for celebration, not cynicism surely!?

You would have to suggest multiple drugs in your protocol because it addresses multiple issues related to multiple physiological systems. I am not being a cynic, I am trying to offer some constructive criticism. The problem is that most of us do all these things or have done all these things in your protocol and we have no reason to celebrate because we simply don't get any better. We have also had a slew of 'Life Coaches' tell us that the fault is others. It's not cynicism, it's realism. I always enjoy reading when members have found something that improves their symptoms in a small way, there are very few that have any long lasting improvements. I am always looking for things to help me and right now I am focused on the immune system. We do tend to look for specific remedies that aren't just lifestyle improvements.

What sets your protocol apart from others?

I think you’ve confused me for a salesman. I came here to get feedback, not to be interrogated or compelled to justify my efforts as being in some way special or unique. I’ll leave it to interested parties to determine whether my theory/advice holds any water

I wasn't asking if your efforts were in some way special or unique. I was asking simply if you thought there was anything different or unique about your protocol. I am going to say this in a kind way but you come across as being very defensive and angry when members criticize your protocol or hypothesis. Real scientists love criticism and questions because it helps them refine, refine, and refine more. You have entered a forum with many many members who have an amazing and scientific knowledge of ME/CFS and if I were you I would listen to them because their knowledge is one of your best resources.

Kina said: ↑
You link to some research that hasn't been replicated, don't have enough subjects to be indicative of anything, use unacceptable criteria, are really researching fatigue, are published by people who seem to be making money off the research

I don’t disagree, and I do intend to tighten up the evidence base in so much as is possible as I ‘refine’ the content

As I said before, you really should take a good look at the research you have included and discard those that don't use a subject pool with the proper criteria. A lot of the research is aimed at people who don't have ME/CFS. If you want to publish a hypothesis and protocol in the future, it would serve you well to be only addressing people with ME/CFS. And you better define what you mean by ME/CFS.

Kina said: ↑
A definitive hypothesis/theory should have valid, reliable, and replicated research behind it

This will probably never be a definitive (scientifically robust) theory, at least not in our lifetimes – it’s an extremely broadly based conceptual model, not (currently) a testable hypothesis (short of pooling vast medical/scientific knowledge/resources, to substantiate the constituent hypotheses, which would be fantastic don’t get me wrong!)

Inroads are being made. The work by Fluge and Mella is quite good but that has years more to go in terms of testing. A cogent hypothesis/theory will unlikely come from putting all the present research together to find an answer because a majority of it isn't reliable or valid. This is why we need more research with strict adherence to researching subjects using the proper criteria for inclusion. With this kind of research we may be able to connect the dots. So if there is good research related to the immune system, good research related to mitochondrial dysfunction etc, etc,, it may get tied together. When these answers become clearer, so will the type of therapy needed.

Kina said: ↑
Your hypothesis is not clearly stated

I am working on that, as I’m sure you’ll appreciate looking at PART VI it’s not the simplest thing to explain concisely, or precisely, particularly when where I’m at is getting a sense of the interconnected pathology, rather than drilling down and understanding all the mechanisms, their relations, and likely order of sequencing involved

Theories and hypotheses by their nature should be concisely explained and defined.

Kina said: ↑
You seem to setting yourself up in a position of authority regarding ME by devising a hypothesis and protocol and offering all sorts of advice in a blog

I’m not sure what it is you are trying to say. If in attempting to solve a problem that effects me personally, and millions of people the world over besides, is to be interpreted as ‘setting myself up in a position of authority’ then so be it? I don’t act as if I have great authority or all the answers, I just state my views based upon my knowledge and conceptualisation – every bit as fallible as the next layman..

Actually, you do behave as you have answers after reading some of your responses. You tend to come across as you very knowledgeable and when people question you, you tell them to go read your protocol even though they have. The problem is most of us have read tons of information regarding ME/CFS and if you are offering a hypothesis and protocol we like to know who you are, your education, your diagnosis, and so on. The problem that affects you personally, may not be the same problem the rest of us have. We would like to know that it is. The problem is that you are stating your views based on your knowledge and conceptualization. Perhaps you could accept that some of your views and conceptualizations may be incorrect and/or damaging to PWME.

Kina said: ↑
There are many theories and treatments offered on the internet that are untested by scientific research that seem to rely on personal opinion and personal experience. What sets you apart?

Again, I’m not really here to sell myself/justify my efforts. I’d rather people focus on the material than on me/my personal view of my own theory

If you present an hypothesis related to ME/CFS along with a protocol, it's important to know your level of understanding etc. There are many theories re: ME/CFS devised by lay people and most of them come from people who have found what works for them and then decide it will for the rest of the world and want to make some money selling their theory and protocol. There are people that have never had ME/CFS, who claim they do and they do it to make money. There are tons of protocols on the internet that are very similar -- eat right, sleep right, take supplements, avoid stress, have the right attitude. I was asking what makes your protocol different from all the others? What is it that would make me read yours and try yours over others? I think it's a fair question.

Kina said: ↑
These protocols fail to help and it's just more money out of our wallets and more disappointment

Again, the good thing as far as I’m concerned is that if I’m right in my theory, and my advice is indeed sensible, then it can pretty much be pursued for free and we can help ourselves hasten our own recovery

It's sensible in terms of helping to maximize health status, it is likely not helpful for ME patients to get better.
Please provide some research that definitively shows that we can 'hasten our recovery' by following a protocol such as yours. From your statement, I do get a sense that you really don't understand ME very well.

Kina said: ↑
you should be providing clear answers

There may be no, single, clear, simple, answer to the highly complex disorder that is ME/CFS. I don’t see why I “should” be searching for it, I’m free to take the approach that I deem to be most likely to produce results and I would encourage others to remain as open minded as possible about the ways in which we may, as a community, gain important insights over time

Well then, don't get angry and annoyed when people criticize your approach and realize that others are free to reject/accept based on their own knowledge level and expertise. You also asked for feedback and input and in order for members to effectively do that you should be clear in what you are suggesting.

Kina said: ↑
a clear reason why your protocol would be advantageous to people with ME

I think I’ve already explained this but I believe ME/CFS is a problem with systemic stress reaching a threshold level beyond which important systems go into melt down – the protocol aims to reduce systemic stress from all the angles it’s thus far occurred to me to cover (feel free to suggest others)

It doesn't answer the question. What do you actually mean by 'systemic stress'. I have worked with some very sick people who do not have ME -- liver failure, wiped out immune systems, etc -- if anything these people should develop ME because their systems are in melt-down and have been for years. If your protocol removes systemic stress from all angles and a person is not any better, then systemic stress has absolutely nothing to do with it which suggests a totally different underlying mechanism.

Kina said: ↑
You also need to define what criteria you are using -- CCC, ICC, Fukuda, London, Oxford

I don’t see further narrowing by nuances of particular definitions as particularly useful I’m afraid. I’d rather bring the greatest good to the greatest number than get bogged down in focusing forensically on definitions or arbitrary sub-groups (which may well simply be patients at a different stage in the pathogenesis of the same condition/patients with different pathological presentation of the same core pathophysiological processes in many cases)

That's a problem because if you don't define who exactly your hypothesis/protocol is aimed at by using some kind of criteria then your hypothesis/protocol may be addressing a population that doesn't have ME/CFS. There are definite symptoms that include/exclude from the diagnosis. I would suggest that you consider the CCC or ICC and pay attention to them. God knows a lot of doctors don't when they throw you into the garbage can of CFS. You should 'bog' yourself down in the diagnostic criteria if you are going to write about ME/CFS.

Kina said: ↑
Your protocol offers a lot of common sense -- maximize health, target symptoms, relieve stress, change diet and they would be reasonable if they really worked

You don’t think these things bring benefits to health?

I have already said that lifestyle changes are very beneficial especially to those who have a bad diet, hectic stressful lifestyle. It's also a good idea to lead a healthy lifestyle if you are chronically ill with anything but it's not an answer to treat a chronic illness unless the chronic illness is caused by a bad diet, stress, burn-out etc. A unhealthy lifestyle can cause one to feel tired and washed out and changing these things are helpful. My point is that some of us lead very healthy lifestyles but are still extremely sick. You seem to be unable to accept this.

Kina said: ↑
What I have not seen with protocols like yours is a big dent in the number of people remaining ill

Well let’s hope this one is different!

This is why I asked what is so special about yours. There are identical protocols out there and many have tried them and they fail.

Kina said: ↑
What population is your protocol aimed at?

Citizens of the world

Why not aim it at people diagnosed with ME/CFS via either the CCC or ICC rather than the whole world. Perhaps, you should be writing about how joe average burn-out, stressed-out, smoker, drinker, junk food eater should follow your protocol to increase their health and well-being.

 

[snowathlete]

I don't recall asking for your impression on the mater of my diagnosis? Do you not understand that to stray down that road uninvited is entirely inappropriate behaviour?

I'm terribly sorry if my historic physical capabilities offend thee..

I do not practice professionally, everything I have done/everyone I have helped to date has been for free

I think what Val and others are getting at is that your protocol and advice doesn't appear, to at least some of us, to reflect the reality of me/cfs as defined by the ICC, CCC, or even Fukuda and that naturally leads to people wondering if you really have it. some of the things you say, we cant imagine anyone who has the illness saying. I understand you don't want your diagnosis questioned but at the same time you did invite that to some degree by firstly coming up with this protocol in the first place (it does sort of mean that people are going to question your experiences more vigorously than other more regular posts by people), and you also answered questions on how you arrived at your diagnosis so it's no surprise that people are going to point out the dis-similarities to many PWMEs experience.

Your last sentence, where you say "To date" - There seems to be an implication there but i don't want to assume anything - are you saying that in the future youre going to try and make money out of your protocol, or will that not happen?

 

[John H Wolfe]

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02405.x/full

Interesting stuff, thanks
http://www.meassociation.org.uk/wp-.../Fall2011-Kindlon-Harms-paper-59-111-copy.pdf

http://www.meassociation.org.uk/wp-.../Fall2011-Kindlon-Harms-paper-59-111-copy.pdf

Also useful, for context, thanks

 

[John H Wolfe]

How about studying the ICC and rethinking your hypotheses?

I am aware of the definitions and some of their distinctions, I simply do not see it as necessary to cater for them in the presentation of my protocol at this stage. For the record/clarity however, you'll note that my hypothesis article outlines what is meant by ME/CFS in my resources

I'm afraid I can't access the resource you linked me to

And while we are at it...it does not inspire confidence for someone presenting himself as a researcher to name his or her hypothesis after him or herself--even if using a pseudonym!

I'll be sure to bare that in mind when naming things in future. I suppose I was influenced by the precedent set by Dr. Perrin and Dr. Myhill in that regard. If you can think of a sexier (short) name feel free to suggest one