Having been suffering myself from ME/CFS (and/or possibly long COVID) since early 2020 (after I fell ill with an illness very similar to COVID-19 at the end of 2019) I understand and feel your frustration, pain and suffering having to face a very long haul chronic debilitating complex disease with complex/unknow/obscure etiology/mechanisms and no current proven cure and nothing much effective to treat the symptoms neither.
At least for long COVID and also ME/CFS (thanks to long COVID which has many similarities with ME/CFS) there are quite a few labs/researchers/nerds/… who are interested in trying to advance the science around these illnesses. It must be really dreadful as it seems to be the case for you, to have a mysterious chronic illness without even a specific name attached to it (from what I understand), only a set of symptoms which (similarly to ME/CFS) can have many different possible root causes/factors.
I guess one of the first things to do to create/market/… an interest from labs/researchers/nerds/… would be to find other people suffering from the same illness and create/coin a name for that illness and create some association/website/gatherings/… to communicate about it like it is done for most other illnesses?
With regard to addressing the etiology of complex chronic illnesses, specially the ones involving dysfunctions of the immune system, of the autonomic system, of the physiological energy generation/consumption mechanisms, of metabolism, etc… I wish the human body could be put into “profiling mode” (like for software) where you could trace/record in details all the related/relevant biochemical processes going on and then have tools that take that trace as input and provide as output an analysis of the processes going wrong and the root cause(s) of it and the possible remedies for it but it is of course still largely science fiction at this point in time!
So unfortunately, as yourself and some commenters in this thread have said, you have to find or determine by yourself the protocol(s)/approach(es) that you think are best suited to you and what you can do (depending on your own cognitive/physical/relational/financial/… resources).
For ME/CFS, some interesting comprehensive simple-enough-for-the-layman-to-understand approach I have come across so far is this one:
I have absolutely no affiliation and never made contact with the practician who authored that approach and do not endorse it or take any responsibility if you follow it, etc… but simply noted (in my very humble opinion) that this approach as a potentially interesting, comprehensive, systematic, systemic, rational, practical, … example of approach at least from a patient point of view in the current state of science related to ME/CFS (with the option to zoom-in / research further into any level of details at each step of this approach).
I guess this type of systematic/rational/… approach can provide some inspiration for some other complex chronic illnesses at least from a patient point of view. One of the main point of this approach is I think basically to try to list and address each and every possible cause of the illness by priority order of importance/likelihood/....
Note: sorry if my comment looks very “drafty”, as I am invoIved in the same kind of problems as the OP I wanted to quickly give my own very little 2c about them, I might slightly edit some bits of my comment later on to iron it out if/where necessary and if I have the time & energy.
I guess one of the first things to do to create/market/… an interest from labs/researchers/nerds/… would be to find other people suffering from the same illness and create/coin a name for that illness and create some association/website/gatherings/… to communicate about it like it is done for most other illnesses?
Funny that you mention this, because I was just musing about this the other day over on my personal website. Unfortunately I wasn’t able to come up with a very good name...
It must be really dreadful as it seems to be the case for you, to have a mysterious chronic illness without even a specific name attached to it (from what I understand), only a set of symptoms which (similarly to ME/CFS) can have many different possible root causes/factors.
I really appreciate you saying this!
I’ve looked at some of Sarah Myhill’s work before, and yeah, I think it’s a good example of someone seriously thinking about how to solve an illness. I wish I knew how to get more people like her to study different kinds of illnesses too.
Having been suffering myself from ME/CFS (and/or possibly long COVID) since early 2020 (after I fell ill with an illness very similar to COVID-19 at the end of 2019) I understand and feel your frustration, pain and suffering having to face a very long haul chronic debilitating complex disease with complex/unknow/obscure etiology/mechanisms and no current proven cure and nothing much effective to treat the symptoms neither.
At least for long COVID and also ME/CFS (thanks to long COVID which has many similarities with ME/CFS) there are quite a few labs/researchers/nerds/… who are interested in trying to advance the science around these illnesses. It must be really dreadful as it seems to be the case for you, to have a mysterious chronic illness without even a specific name attached to it (from what I understand), only a set of symptoms which (similarly to ME/CFS) can have many different possible root causes/factors.
I guess one of the first things to do to create/market/… an interest from labs/researchers/nerds/… would be to find other people suffering from the same illness and create/coin a name for that illness and create some association/website/gatherings/… to communicate about it like it is done for most other illnesses?
With regard to addressing the etiology of complex chronic illnesses, specially the ones involving dysfunctions of the immune system, of the autonomic system, of the physiological energy generation/consumption mechanisms, of metabolism, etc… I wish the human body could be put into “profiling mode” (like for software) where you could trace/record in details all the related/relevant biochemical processes going on and then have tools that take that trace as input and provide as output an analysis of the processes going wrong and the root cause(s) of it and the possible remedies for it but it is of course still largely science fiction at this point in time!
So unfortunately, as yourself and some commenters in this thread have said, you have to find or determine by yourself the protocol(s)/approach(es) that you think are best suited to you and what you can do (depending on your own cognitive/physical/relational/financial/… resources).
For ME/CFS, some interesting comprehensive simple-enough-for-the-layman-to-understand approach I have come across so far is this one:
https://www.drmyhill.co.uk/wiki/Overview_of_CFS/ME_protocol
I have absolutely no affiliation and never made contact with the practician who authored that approach and do not endorse it or take any responsibility if you follow it, etc… but simply noted (in my very humble opinion) that this approach as a potentially interesting, comprehensive, systematic, systemic, rational, practical, … example of approach at least from a patient point of view in the current state of science related to ME/CFS (with the option to zoom-in / research further into any level of details at each step of this approach).
I guess this type of systematic/rational/… approach can provide some inspiration for some other complex chronic illnesses at least from a patient point of view. One of the main point of this approach is I think basically to try to list and address each and every possible cause of the illness by priority order of importance/likelihood/....
Note: sorry if my comment looks very “drafty”, as I am invoIved in the same kind of problems as the OP I wanted to quickly give my own very little 2c about them, I might slightly edit some bits of my comment later on to iron it out if/where necessary and if I have the time & energy.
Funny that you mention this, because I was just musing about this the other day over on my personal website. Unfortunately I wasn’t able to come up with a very good name...
I really appreciate you saying this!
I’ve looked at some of Sarah Myhill’s work before, and yeah, I think it’s a good example of someone seriously thinking about how to solve an illness. I wish I knew how to get more people like her to study different kinds of illnesses too.