Dr Kharrazian chronic fatigue and pain syndromes course

[Irat]

I m glad you have been helped by science and medicine ,it did not do anything for me when I had been 3 years suicidal, screaming and begging god he would take me,because my brain was so toxic and shut down,

Beeing hospitalized (doctors did not know what to with me ),throwing up every morning when I tried to move my head,all muscles went,my neck had collapsed,I have lost 4 teeth quickly ,over 200 life threatening symptoms .dystonia and tardive dyskenisia(had to call the ambulance twice because my neck kept stuck ,torticollis it was and i was so scared, ) and never thought I would even make it because I was destroyed from head till toe ,if I had listen to (or waited for ) science and medicine I would be either dead by now or polydrugged

but alternative therapies brought me back to life and by year 6 I did hike up and down in the alps,with only 30 min mild PEM afterwards and I had my life back, and all other symptoms were resolved.

and then medicine few years later fu....ed me up again. @Learner1 I also was a nurse ,I loved my job and handed out pills like candies,oh and loved science and only now I can see how much damage medicine has done to patients.

 

[Martin aka paused||M.E.]

can see how much damage medicine has done to patients

And you can't see how many took life-saving drugs?
I'm also damaged (floxed). But to say that all science is bad and all pharmaceutical drugs are evil is an oath.

 

[Irat]

And you can't see how many took life-saving drugs?
I'm also damaged (floxed). But to say that all science is bad and all pharmaceutical drugs are evil is an oath.

They save life ,but in chronic illness I think they are useless plus they always come with a price you have to pay,either immediately or later.i did not say all science is useless,but it has not helped us much yet,has it ?

 

[Martin aka paused||M.E.]

They save life ,but in chronic illness I think they are useless plus they always come with a price you have to pay,either immediately or later

Tell that a patient with RA or psoriasis arthritis etc... Without biologicals they would be cripples

 

[Martin aka paused||M.E.]

You are serious ?they are helped pretty well with alternative medicine.doctors give steroids for it.my dog had spondilitis,could not walk,I did help him till he was 16 with alternative therapies

I had PA and I'm not kidding... Steroids are contraindicated with psoriasis... Do your homework before posting please. And your alternative therapies : I was in self-help groups who thought like you. Unfortunately their joints all got irreversibly damaged by their bodies.

 

[Shanti1]

chronic illness I think they are useless plus they always come with a price you have to pay

I am somewhat surprised by this statement. Nothing is ever black or white, all good or all bad. Clearly, there are people on this forum who have been damaged by conventional medications, and people who have been helped tremendously. Personally, I have tried a host of alternative therapies and natural antivirals, but the first time I felt a clear response to something was with valacyclovir. I credit science for discovering viruses, linking them to CFS and developing antivirals.

 

[Irat]

I had PA and I'm not kidding... Steroids are contraindicated with psoriasis... Do your homework before posting please. And your alternative therapies : I was in self-help groups who thought like you. Unfortunately their joints all got irreversibly damaged by their bodies.

No need to argue Martin,docs do prescribe cortisone for it. ....everyone can do what feels right for them,I have been damaged by meds and helped by alternative stuff,so I can have my opinion just as you can,

 

[Martin aka paused||M.E.]

No need to argue Martin,docs do prescribe cortisone for it. ....everyone can do what feels right for them,I have been damaged by meds and helped by alternative stuff,so I can have my opinion just as you can,

Yes, I won't discuss this further as you obviously have never seen a dermatologist for psoriasis or a rheumatologist for PA then you would know that they give only topical cortisone (betamethasone in combination with a Vit D derivate) and only systemic cortisone when your life is in danger... Rebound effect!

 

[GlassCannonLife]

Wow, this escalated didn't it.

I find the discussion of medicine, science, functional medicine, and alternative medicine fascinating, and often heated. I do think, however, that disagreements are often due to a muddying of terminology, as well as being influenced by emotional ties people have to their past experiences (or trauma from them).

Firstly, saying that science and medicine are overall not to be trusted is simply a misunderstanding of what they are. Science is at its core a method of testing hypotheses, in the most rigorous and objective way possible. Scientific findings are only integrated into mainstream medicine once they have been shown to be rigorously proven and replicable, generally across multiple large-scale human studies, in a strictly defined population. Standard medicine as a core system provides a streamlined approach to mainstream problems in the most effective way possible - but after you have managed to move from concept to in vitro, in vivo, and finally many clinical trials. Yes it is slow and often ineffective, but it is designed to be that way to make it as robust and as safe as possible.

Functional medicine appears to tread slightly between science and medicine, where early studies on topics that have not been rigorously tested but seem promising are incorporated into experimental treatments, and as @Learner1 said, individual variation is taken into account more than in "standard" medicine. I always find the "functional medicine" term a bit misleading, however, as it seems to me that any doctor should provide an individualised level of care without having to be labelled as a functional medicine doctor. Isn't that just being a good doctor? Looking at individual issues is still done in normal medicine, the doctors just generally have less knowledge about nutrition, biochemistry, immunology, etc than the "functional medicine" doctors do. I think it's a shame that they have to label themselves differently but I guess "actually good doctor" wouldn't work.

Furthermore, once any individual-specific problem has been understood more completely, it will no longer need to be addressed as a matter of the individual. That is to say, comprehensive testing will emerge that can identify the problem, and efficacious solutions will be presented for it - ie it will become "standard" medicine. This is still of course subject to the slow moving nature of medicine, as seen in conditions such as hashimoto's, where many doctors are still very slow and behind the literature in terms of their treatment strategies.

In my understanding, alternative medicine is also attempting to do the same thing as all of the above, by filling the gaps in the current understanding of health conditions based on again preliminary scientific work. In this case, however, it is generally based on even looser results (e.g. in vitro studies with herbs, or early small animal work, etc). There are more risks in this arena as more quacks are attracted to it and get away with convincing people to try nonsense ideas so they can make a quick buck.


It is all overall one continuum though, only with an increasing evidence base and understanding as you move from the alternative -> functional -> standard medicine. I'm sure once this illness is better understood and comprehensive treatments emerge, it will simply become integrated into normal medicine.

I wonder if in 10-20 years we'll be laughing at how people will be able to go to the doctor, get a blood test, they'll say "ah looks like you have a mild case of post-viral fatigue, here take this drug for the next two weeks", and it'll be as simple as getting antibiotics for an infection. We can only hope!


Anyway, getting back on topic, @Shanti1 , thank you for offering to share your experience with the course! I hope it will provide us with some new information. I am a little skeptical that it will be anything that we haven't already been pursuing through various approaches, but it will be good to know in any case.

 

[YippeeKi YOW !!]

Science at its best

...

Funny !!! And incisive ....

 

[hapl808]

I wonder if in 10-20 years we'll be laughing at how people will be able to go to the doctor, get a blood test, they'll say "ah looks like you have a mild case of post-viral fatigue, here take this drug for the next two weeks", and it'll be as simple as getting antibiotics for an infection. We can only hope!

One hopes so, but this has been the promise of precision medicine, gene sequencing, Theranos, promising new drugs, AI, etc. Seems like the answer has been 10 years away for at least the last 40 years. Sometimes it's only five years away. Ah well.

 

[YippeeKi YOW !!]

Do we still take science serious?

I think that considering the kind of dismissive, incredulous, eye-rolling treatment that many of us have received from the medical profession, it's quite possible that many members here don't take science seriously. Or at least not all of it.....

Like @Irat , I was badly damaged by medical 'interventions' and 'treatments', and almost died, then was catapulted into the hardest, darkest near-decade of a life filled with what we'll call difficult ME adventures.

What fun.

It as the alternative stuff that I either discovered thru painfully slow research, done of the rare days when I had any appreciable brain function, or that I knew of thru a previous lifetime of industrious tho casual study and experimentation with herbs, vitamins, supps, etc ..... and those were the things that finally pulled me back from the lip of the cliff ....

 

[YippeeKi YOW !!]

I actually will be attending as I am in "leave no stone unturned mode" and I can provide a general overview sometime next week.

That's just incredibly generous of you, @Shanti1, and thank you !!!!

 

[BrightCandle]

I think that considering the kind of dismissive, incredulous, eye-rolling treatment that many of us have received from the medic

What medicine does isn't scientific and that is largely the issue. They do a lot of diagnosis via drugs to just try and get rid of us. There is no science approach in how they do a diagnosis. My issue isn't with science, that is a relatively OK mechanism and one I follow to treat myself, no what they do is a whole different beast that is strongly driven by culture both intrinsic and in medicine itself.

The beast to slay here for medical mistreatment goes beyond finding a good diagnostic and treatment for ME/CFS, that cultural change is the much harder one to deal with and its the part that is stopping them making progress on what the disease is.

 

[Martin aka paused||M.E.]

and those were the things that finally pulled me back from the lip of the cliff ....

That's great and I'm always happy to hear if someone finds some relief.
I don't want to argue about one's personal approach at all. But e.g. my mother has been saved by antibody therapy in late-stage cancer. So did my grandma (may she rest in peace) survived 25 years with serious blood cancer thanks to Novartis.

I suffered myself from various illnesses since my early childhood. Psoriasis with one of the worst before my ME became severe. And as I'm now with pwME I was very active in self-help groups. And there were also many members with PA who refused MTX and biologicals. Unfortunately, they all with only some exceptions got to the point where they had to give up on vegan diet, curcumin, boswellia etc and get pharmaceutical help - while thier joints where already irreversibly damaged.

There are a hand full who went into remission and said it was due to vegan diet, cats claw whatever. But I have to tell you that AI diseases can have spontaneous emissions - mine disappeared as well while I had pharmaceutical topical steroids and took NSAR against inflammation in my joints and happily enjoyed my pizza and pasta with a big glass of cold beer.

And I'm very sensitive to anti-science babble. This is the only (at least half-)objective gain of knowledge e have. Think of Ebola. And cancer: What would have happened without science and pharmaceutical interventions? Would I still hug my mum or only see her when I close my eyes?

So, what do we take away from this? Drugs can seriously harm you, yes! But diseases can do that too! Drugs can be fatal, diseases too. But especially untreated fatal medical conditions usually lead to death while drugs can give you the last thread of hope. Integrated conditions that are degenerative can lead to serious and crippling damages you can't reverse anymore.

Please be balanced here. The world is not black or white.

 

[Martin aka paused||M.E.]

What medicine does isn't scientific

That's a generalization that doesn't hold true. There are flaws and manipulation but overall medicine is a science.

 

[YippeeKi YOW !!]

But e.g. my mother has been saved by antibody therapy in late-stage cancer.

And the cancer that my body had to fight off for over two years as Dr after Dr misdiagnosed, dismissed, and in one case, actually laughed at me and my 'ridiculous' symptoms was put into remission by pretty awful intensive chemo and two experimental drugs, all of which Im very grateful for.

It almost makes up for nearly dying .....

And I'm very sensitive to anti-science babble.

There're massive amounts of scientific research and investigations into supps and herbs, as well aws TCM and Ayurvedic medicine, among others.

When I say I prefer to go the natural route whenever possible, it's with the knowledge that not only is there a fairly solid body of scientific evidence for a lot of it, but also that I;v had incredible good luck with it.

For one thing, it kept e alive for just under three years of being consumed by a praticularly virulent and aggressive cancer, with obvious symptoms that 5 Drs misdiagnosed 6 times (my PCP shot me ut the door twice).

AI diseases can have spontaneous emissions

Uhhhh .... I'm sure you meant 'remissions' .... unless there's something else I dont know about autoimmune diseases ....

Please be balanced here. The world is not black or white.

Nor have I painted it that way. Please dont put concepts and ideologies in my mouth that were never expressed by me .....

 

[YippeeKi YOW !!]

There is no science approach in how they do a diagnosis.

To a degree, that's absolutely true. They use a 3rd grade learning tree approach that's both reductionist, simplistic, and inevitably falls short of the most optimal outcome for those reasons, at the expense of their patient's health QOL, an, in extreme cases, their actual lives ........

what they do is a whole different beast that is strongly driven by culture both intrinsic and in medicine itself.

It's driven by fear of the diminished opinion of the status quo, ie, their peers. And the hospital that they have privileges at, which can be pulled if Drs color too far outside the lines, too often. And a Dr without an attachment to a reputable hospital is going to have to find a new career ....

And let's not forget the considerable financial blandishments that pharmaceutical companies are willing to offer to those who stick to the playbook ....

 

[Martin aka paused||M.E.]

Uhhhh .... I'm sure you meant 'remissions' .... unless there's something else I dont know about autoimmune diseases ....

I'm sorry for the typo

There're massive amounts of scientific research and investigations into supps and herbs, as well aws TCM and Ayurvedic medicine, among others.

Please dont put concepts and ideologies in my mouth that were never expressed by me .....

That wasn't addressed to you!
I see we are all highly emotional on this topic and I don't want to bother anyone so I'm out.

 

[YippeeKi YOW !!]

I'm sorry for the typo

Don't be !!! It made me smile on a day when there hasn't been much for me to smile about ....

That wasn't addressed to you!

My bad ...... It was an easy mistake, since you were responding to my quote in your post .....

I see we are all highly emotional on this topic and I don't want to bother anyone so I'm out.

Nothing I wrote was "emotional". It was all a pretty straight-up statement of facts ....