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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Diagnosing CFS/ME not Black and White

A.B.

Senior Member
Messages
3,780
In short, with diagnosis like CFS/ME there is far more gray than there is black and white. Anyone who tries to treat is a black and white will most likely fail and any patient who views it as black and white will only produce more anxiety.

What do white and black stand for?
 

Mohawk1995

Senior Member
Messages
287
There is no one standard test nor is there one standard way to treat this and many other diseases. You should not place everyone on Cognitive Behavioral Therapy or a specific exercise program for everyone. Nor should you rely on a single test or any single treatment itself for these complex disorders.

By people's responses, you would think that I am a proponent of Black and White, but I am most definitely not! Makes for great discussion :)
 

Hip

Senior Member
Messages
17,869
You act from a belief that there is some research out there that can clearly define such complex systems when in fact there is not.

Lots of things in the world are complex. Look at the myriad complexity of human society or urban environments, from garbage collection to air traffic control.

But if my toilet suddenly stops flushing properly, in terms of looking for causes, I don't have to take into account the pattern of air traffic above London. In all that complexity, it is pretty easy to eliminate the millions factors that are unlikely to play a causal role. Unless you are some sort of mystic that thinks everything is interconnected.

That in my view is one of the main skills of science: to be able to figure out the factors that are unlikely to play a causal role, and the factors that potentially may play a causal role.



My feeling is that the general philosophical position you are advancing is more to do with what I sense may be a kind of mental exhaustion that you personally have in dealing with the complexity of the world. In an increasingly complex society, that's perhaps understandable. Nothing wrong with someone wanting to abandon all that complexity, and pursue a more simple and perhaps spiritual path.

But that won't help us find the answer to ME/CFS. It might provide some emotional or spiritual support to people suffering from ME/CFS or various other illnesses or afflictions, but it does not solve the root of the ME/CFS problem.
 

Mohawk1995

Senior Member
Messages
287
Hip: Love the thoughtfulness you put into your posts! I think you miss my points, but that is okay.

The only logical response I can come up with is that your toilet is not connected directly and intrinsically to the air traffic above London. Your nervous system is connected to each and every part of your body with a few exceptions such as the nucleus of the disc and the central aspects of the meniscus in the knee.

I am far from exhausted, in fact I am more excited about the future of where research and treatment will lead. It just can't come soon enough!
 

Hip

Senior Member
Messages
17,869
I am far from exhausted, in fact I am more excited about the future of where research and treatment will lead. It just can't come soon enough!

OK, I'll take your word for that.

It's just that some of your language and concepts remind me of some of the spiritual seeker-type individuals I used be involved with (before I developed ME/CFS, I used to have strong interests in spiritual matters, meditation, and so forth, but ME/CFS seemed to biochemically lobotomize my spiritual faculties).

These people would often talk of being more holistic, which on paper sounds good, but it invariably amounts to nothing practical in terms of understanding the material world; you actually end up shunning the material world by being holistic. But then shunning the material world, at least to a degree, is what spiritual development is all about.

I know, because I spent many years exploring meditation and other spiritual practices. And I'd go back to those practices in shot if ever my spiritual faculties returned; but unfortunately there is biochemically blockage there. So I am in the strange position of trying to figure out what that biochemically blockage might be, just in order to regain my former spiritual stance. And you don't find much advice in, for example, Buddhist literature on how to fix such biochemical blockages to spirituality!
 

Mohawk1995

Senior Member
Messages
287
I hear your point and although I have not suffered from ME/CFS I have clearly seen its devastating effects in the lives of those who I know who have (my son included).

I prefer to seek spiritual help for my own spiritual matters. Pretty sure that won't necessarily make me physically better! Too many people out there making a lot of money on health, wealth and prosperity when they should like all of us examine themselves and their motives. Even in the Bible (which many prosperity proponents quote) I find people like Job, Jeremiah, John the Baptist and most of Jesus's Disciples who suffered greatly but were "faithful". I am not sure what "Bible" some people are reading!

Thanks for taking my word on it. I hope for you to be able to regain your faculties. I will work hard on my part when given the opportunity!
 

Hip

Senior Member
Messages
17,869
I hear your point and although I have not suffered from ME/CFS I have clearly seen its devastating effects in the lives of those who I know who have (my son included).

A corollary to my point is this: I am familiar with a lot of different spiritual techniques for mind development or mind healing (from several different religions and traditions), as well as psychological techniques for this. As a curious individual, in the past I explored many different approaches, and so I feel that in terms of techniques for developing, changing or cultivating my own mind, I am pretty resourceful. I have a whole portfolio of resources and techniques amassed from past experience.

Yet I intuitively feel that none of this will help one iota in improving my ME/CFS. Nor will it help any other neurological or immunological diseases. At best it may help you cope with the disease. Which is why, in spite of my interest in these spiritual or psychological matters, I fight like everyone else on this forum to try to get the medical profession to appreciate that ME/CFS is not a psychogenic disease.
 

Mohawk1995

Senior Member
Messages
287
I am with you as a medical professional in the fight against labeling this a psychogenic disease! Maybe I can push for more change in that arena too!