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?
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.