Help! Interested in micro/macro dosing magic mushrooms. Also looking for some insight regarding other usage

[luckydice650]

Hi,

Signed up to these forms to see if I can gleam some insight in how I can be sensible on proceding with magic mushrooms in the right environment and with the right people.

I want to get back to where I used to be. I used to be a fell runner and an ultra runner and now comparatively if I exert myself too much, I sense my nervous system senses the input as being too much and well I feel physically ill.

I developed chronic fatigue and brain fog 3 years ago, and since then my life has been altered since, and I have been trying to adjust for it ever since.

Here is a list of things I have utilised with some varying levels of success.

1)smart drugs (nopept, piracatem, phenyl piracatem)
2)natural botonicals and herbs etc. I.e. bacopa moneiri, lions mane, cordyceps, turkey tail mushroom etc. My main source being *Cannot reference this*
3)peptides - bioregulators really, the khavison ones. Anything aimed at theorising what particular health I have and basically self experimenting, however it is all research based so its suspect.Aditionally I have used cerebrolysin and the pill form called memoprove.
4) magic mushrooms micro and macro dosing. Mix of experiences.
5)health wise extended fasting and a ketogenic/carnivore diet

I am not even sure anymore, I can't seem to tackle to unrelenting fatigue and I am really struggling with my mental health, I am completely unable to work and the brain fog renders me useless for remote work, I find I cannot even articulate what I mean to say or do through any conversational medium. I struggle now more than ever with social interaction and keeping a mask up really to show people i am not tired.


I have been looking for various mushroom picking spots throughout my area, however it isn't wet nor cold enough yet. I am aware I might essentially be messing up my brain chemistry by mixing various unknowns, so this is why I am posting on a harm reduction website.

I feel I need to be careful, as I likely am not in the best cogntively functional situation, I want to do shrooms for my mental health and fatigue, I am just trying to figure out the best way to do it.

 

[Althodius_Trismegistus]

Hi,

Signed up to these forms to see if I can gleam some insight in how I can be sensible on proceding with magic mushrooms in the right environment and with the right people.

I want to get back to where I used to be. I used to be a fell runner and an ultra runner and now comparatively if I exert myself too much, I sense my nervous system senses the input as being too much and well I feel physically ill.

I developed chronic fatigue and brain fog 3 years ago, and since then my life has been altered since, and I have been trying to adjust for it ever since.

Here is a list of things I have utilised with some varying levels of success.

1)smart drugs (nopept, piracatem, phenyl piracatem)
2)natural botonicals and herbs etc. I.e. bacopa moneiri, lions mane, cordyceps, turkey tail mushroom etc. My main source being nootropics depot.
3)peptides - bioregulators really, the khavison ones. Anything aimed at theorising what particular health I have and basically self experimenting, however it is all research based so its suspect.Aditionally I have used cerebrolysin and the pill form called memoprove.
4) magic mushrooms micro and macro dosing. Mix of experiences.
5)health wise extended fasting and a ketogenic/carnivore diet

I am not even sure anymore, I can't seem to tackle to unrelenting fatigue and I am really struggling with my mental health, I am completely unable to work and the brain fog renders me useless for remote work, I find I cannot even articulate what I mean to say or do through any conversational medium. I struggle now more than ever with social interaction and keeping a mask up really to show people i am not tired.


I have been looking for various mushroom picking spots throughout my area, however it isn't wet nor cold enough yet. I am aware I might essentially be messing up my brain chemistry by mixing various unknowns, so this is why I am posting on a harm reduction website.

I feel I need to be careful, as I likely am not in the best cogntively functional situation, I want to do shrooms for my mental health and fatigue, I am just trying to figure out the best way to do it.

I have been doing psychedelics for 25 years and this is my advice...
Alot of times with trippin' you get the trip you deserve . If you have done some bad heavy shit then you are "in for it" if you think and do deserve a good trip as a good person then it shall be so micro or macro what have you

 

[iom]

I want to get back to where I used to be. I used to be a fell runner and an ultra runner and now comparatively if I exert myself too much, I sense my nervous system senses the input as being too much and well I feel physically ill.

I developed chronic fatigue and brain fog 3 years ago, and since then my life has been altered since, and I have been trying to adjust for it ever since.

Hi @luckydice650 and welcome to Bluelight! As a first order of business, Bluelight prohibits discussion of vendors and sources. You should probably edit your post to remove the names of the places you buy your nootropics and supplements.

You seem to be describing post-exertional malaise (PEM), which is a phenomenon commonly associated with chronic fatigue syndrome, long COVID, and related disorders. I have personal experience with symptoms such as these as well as many others which developed a couple months after I (probably) caught COVID in March 2020.

We must keep in mind that a treatment that works well for one person may not work well for another. I don't want to get your hopes up, but I credit my use of psychedelics with life-changing improvements up to and including total remission for extended periods of time. I don't think my solution is simply to "take the psychedelic". I believe various non-drug activities have played a critical role as well.

I don't have time for a longer form response right now, but I also have some questions about you. Specifically, do you mind going into detail about your mushroom experiments and how they worked for you, physically as well as mentally?

 

[luckydice650]

Cheers.

I'm just going to wait until these oscillations with my mental health subside, and then I'll consider it.

I'd grow my own but I still live at my parents.

Yeah, I am pretty sure it is post exterional malaise (PEM), It doesn't help when you have people around you continually gaslighting you and expecting the world from you, yet just to keep up the most mundane level of existence is too much, and yet that isn't enough for the people around you whatsoever.
Yeah there is various things I could do with implementing, I think moving out might be a good shout first, I need to look at accommodation to really sort this out, I live with parents who I suppose don't want to believe I have an active illness going on, same with my siblings, I think they're in sort of dis-belief, but they know I haven't been the same for years now, so I don't know what to do. I am stuck living at home, dealing with chronic fatigue. I seem to find these manic bursts of energy and then it gives way and I am left almost back at square one.

Yeah, I suppose I don't mind. Well, I would say one of the things I find psilocybin seems to help with, is general energy levels massively. I think the chronic fatigue, I deal with day to day is a multi system problem. It doesn't help either, when the systems which are meant to help you, don't do anything of the sort. They'd just rather prescribe you antidepressants, meant to be start volunteering, but perhaps moving out sooner rather than later would be better.

 

[placebonaut]

I developed chronic fatigue and brain fog 3 years ago,

have you been formally diagnosed?

I want to do shrooms for my mental health and fatigue, I am just trying to figure out the best way to do it.

what makes you think that shrooms will help?

I have been looking for various mushroom picking spots throughout my area

depending on where you are the legality of different psychedelics can vary quite a bit, shrooms, cacti, and truffles have different laws depending on where you are in terms of buying dried/fresh/growing your own.

In the UK it use to be legal to pick wild mushrooms but they closed that loophole, though how they police it when they grow quite freely here is another question.

You should probably edit your post to remove the names of the places you buy your nootropics and supplements.

don't think this is an issue if the substances aren't illegal...but a mod will no doubt say if it is

 

[luckydice650]

Yeah, the only reference I included was a nootropics supplement vendor based in the US which is completely legal btw.

No I haven't been formally diagnosed no, however I deal with all the symptoms pretty much and I am unable to work as a result, and I struggle day to day. I need to go back to the GP for reconsideration, last time they said I didn't have CFS but dysautonomia. Whatever is the case, mild exertion day to day seems to worsen stuff or trigger PEM.

(liberty caps), it just doesn't seem to be the right weather yet, it's decently cold however the ground is still so dry.

Yeah, it's rather hard to police it really, if people pick liberty caps or not. As they grow naturally. Synthetic psilocybin is being utilised in various clinical trials for treatment resistant depression and other mental health conditions.

So yeah, in terms of substances, I have actually had psychedelic truffles, but they aren't as good as liberty caps. The one decent experience I had, was when I picked them locally. However, I think there's a reason why you want to approach in terms of harm reduction and maybe with a psychologist.

It's crazy a government, can make something illegal, when they were made illegal in the 1970's by the nixon administration and then all the other western countries followed that example, well as they didn't want people to stop being so pro war.

I guess yeah a law is a law, however doesn't stop individual citizens recognising it's not immoral.

If I were to do anything, I'd grow my own from a spore kit.

My biggest problem is the chronic fatigue and sensitive nervous system to feeling ill when over exert myself, then additionally chronic headaches all the time, or well cognitive impairment alongside, I struggle to cognitively undertake tasks sometimes, I guess an analogy of a battery being depleted probably works quite well.

What helps me think shrooms will help, well with the headaches for now, and I think my cfs is neurologically derived however that's just my own thinking on the matter. I could do with discussing it over with a psychedelic assisted therapist to see what they would say.

 

[placebonaut]

No I haven't been formally diagnosed no, however I deal with all the symptoms pretty much and I am unable to work as a result, and I struggle day to day. I need to go back to the GP for reconsideration, last time they said I didn't have CFS but dysautonomia. Whatever is the case, mild exertion day to day seems to worsen stuff or trigger PEM.

go get a proper diagnosis and get proper treatment.

Take shrooms to trip, not because they're going to cure you, you don't need an excuse to do shrooms, equally they're not going to cure all your ills, they're magic but not that magic!

Synthetic psilocybin is being utilised in various clinical trials for treatment resistant depression and other mental health conditions.

yes though the research is still in early phases and there's risk with taking psychedelics as well, do your research so you're making informed decisions.

I'm pro using them for depression personally knowing what they've done for me, but YMMV and there's a difference between taking any drug recreationally versus medically.

So yeah, in terms of substances, I have actually had psychedelic truffles, but they aren't as good as liberty caps. The one decent experience I had, was when I picked them locally. However, I think there's a reason why you want to approach in terms of harm reduction and maybe with a psychologist.

This is the nub of the trails, eating some shrooms on your own is very different from a guided experience supported by a mental health expert who is using it as a tool.

I'm not trying to talk you out of taking them, just make sure you're clear on the reason why, to thine own self be true....

It's crazy a government, can make something illegal, when they were made illegal in the 1970's by the nixon administration and then all the other western countries followed that example, well as they didn't want people to stop being so pro war.

I guess yeah a law is a law, however doesn't stop individual citizens recognising it's not immoral.

preaching to the choir here I think

If I were to do anything, I'd grow my own from a spore kit.

My biggest problem is the chronic fatigue and sensitive nervous system to feeling ill when over exert myself, then additionally chronic headaches all the time, or well cognitive impairment alongside, I struggle to cognitively undertake tasks sometimes, I guess an analogy of a battery being depleted probably works quite well.

What helps me think shrooms will help, well with the headaches for now, and I think my cfs is neurologically derived however that's just my own thinking on the matter. I could do with discussing it over with a psychedelic assisted therapist to see what they would say.

I don't know enough about your condition and if shrooms would help, there's plenty of people here that might have a view though.

my only real observation is that there are better options to treat pain, and in terms of fatigue I'd be looking to proper medication rather than recreational drugs, better to talk to a Dr about it, they might end up prescribing a combo of a stim, anti depressant and pain med. (I'd personally be using something different to shrooms for this myself if I went down the rec route).

I'll be interested in the views of the experts on here about shrooms benefits on brain fog and fatigue though.

Having said all that, taking shrooms for fun is a perfectly good reason to take them.....just know what you're doing

 

[luckydice650]

Yeah, currently my approach to things is to use botanicals and semi pharmaceuticals really. Like utilising noopept for focus and brain fog, or lions mane etc or memoprove which is quite useful.

Yeah, well I have friends who I'd potentially trip with when the time is right, I know what it is like to trip in the wrong circumstance. I have done it before, I wouldn't advise it. Yeah, I totally like tripping for fun haha.

Yeah, I should pursue professional help, it's just when I am utlising nootropics, peptides(bioregulators from time to time). I guess there is an unknown which is generated through my need to fix things through being quite impulsive.

Yeah, the thing is I've messed up with even with supplements and minor substances before and had quite negative reactions from mixing things ( I had a really bad reaction when I mixed noopept and nicotine, awful awful headaches) I didn't think about the consequences from mixing. If you take a whole load of supplements potentially having influences on the brain, sometimes you've got no idea what the repercussions are, particularly if you're not healthy anyway and you're more inclined to also read into placebo most likely.

Yeah, it's the reason I joined/why I want to contribute. As I do experiment with substances and well some of them are unorthodox.

For example khavison peptides which I find quite interesting, I have a supply of 3 or 4 of them. Experimental research based "supplement" peptides as how they're classed. However, I think I just need to have open dialogue and tell people what's going on.

Even if it's some random strangers on the internet.

 

[iom]

I'd grow my own but I still live at my parents.

Yeah, I am pretty sure it is post exterional malaise (PEM), It doesn't help when you have people around you continually gaslighting you and expecting the world from you, yet just to keep up the most mundane level of existence is too much, and yet that isn't enough for the people around you whatsoever.
[...]
I live with parents who I suppose don't want to believe I have an active illness going on, same with my siblings, I think they're in sort of dis-belief, but they know I haven't been the same for years now, so I don't know what to do.

I'm so sorry you're having to go through this. I'm estranged from much of my family due in part to their disbelief and my insistence on taking further precautions to protect myself from further infections.

Growing your own mushrooms is definitely the safest way to acquire them in my opinion, and you have an effectively unlimited amount this way. Though you probably don't need much if they do work for you.

I seem to find these manic bursts of energy and then it gives way and I am left almost back at square one.

Sounds familiar.

Yeah, I suppose I don't mind. Well, I would say one of the things I find psilocybin seems to help with, is general energy levels massively. I think the chronic fatigue, I deal with day to day is a multi system problem.

This sounds very promising. Do you experience this increase in energy levels during the main effects? Right afterwards? Starting some days later? How long do these beneficial effects last?

go get a proper diagnosis and get proper treatment.

Ideally, this would be the solution OP. In practice, very few doctors understand these disorders at all. The few specialists who do work with these conditions are generally very hard to access. For example, I live in a fairly wealthy major city in the US, and I'm only aware of one specialist who deals with chronic fatigue, dysautomias, MCAS, and related problems. My primary care doctor says this specialist is booked out 3 years, doesn't take insurance, and charges $3500 per consult.

The other problem is that all known medical interventions provide very temporary and/or marginal relief at best. So first you have to get a diagnosis, then access a specialist, and then pay a lot of money for repeat visits and experiment with all manner of prescriptions which largely don't work and come with many serious risks and side-effects.

This is the nub of the trails, eating some shrooms on your own is very different from a guided experience supported by a mental health expert who is using it as a tool.

Yes, and the quality of guidance obtained from various mental health "experts" is likely to be highly variable. Many therapists are power trippers and may do more harm than good. In Colorado and probably other places too, a person can be certified to "guide" psilocybin journeys without having even taken psilocybin or any other serotonergic psychedelic. One single ketamine experience is considered sufficient.

my only real observation is that there are better options to treat pain, and in terms of fatigue I'd be looking to proper medication rather than recreational drugs, better to talk to a Dr about it, they might end up prescribing a combo of a stim, anti depressant and pain med. (I'd personally be using something different to shrooms for this myself if I went down the rec route).

No no no, not for these conditions. Do some research on Long COVID, Chronic Fatigue Syndrome, POTS, dysautonomias, and so on. Pharmaceutical interventions largely fail. Some things that do kind of work are like beta blockers to reduce the impact of POTS, but most people say those only help slightly if at all. SSRIs are commonly prescribed with a few people reporting marginal improvements, but these are often temporary and then one must deal with side-effects and a dependence with potentially nightmarish withdrawls. Stimulants almost always make things worse. They are basically over-exertion in pill form.

I appreciate that you are trying to help here. I'm just speaking from my extensive research and direct experience. IMO the best known inverventions are non-pharmaceutical in nature. These are things like training, coaching, therapy etc. that addresses the day-to-day reality of living with these conditions. These services are extremely difficult to access and likely not covered by health systems and/or insurance plans. The system is horribly broken with many millions of us left out in the cold and effectively unpersoned by a society that values people entirely on the basis of their ability to be economically exploited.

 

[placebonaut]

@iom agree with most of your post but not this point I'm afraid

No no no, not for these conditions. Do some research on Long COVID, Chronic Fatigue Syndrome, POTS, dysautonomias, and so on. Pharmaceutical interventions largely fail. Some things that do kind of work are like beta blockers to reduce the impact of POTS, but most people say those only help slightly if at all. SSRIs are commonly prescribed with a few people reporting marginal improvements, but these are often temporary and then one must deal with side-effects and a dependence with potentially nightmarish withdrawls. Stimulants almost always make things worse. They are basically over-exertion in pill form.

I appreciate that you are trying to help here. I'm just speaking from my extensive research and direct experience. IMO the best known inverventions are non-pharmaceutical in nature. These are things like training, coaching, therapy etc. that addresses the day-to-day reality of living with these conditions. These services are extremely difficult to access and likely not covered by health systems and/or insurance plans. The system is horribly broken with many millions of us left out in the cold and effectively unpersoned by a society that values people entirely on the basis of their ability to be economically exploited.

I don't doubt that you're right IF it's 1 of these conditions, however there's a danger of doing armchair diagnosis here when what OP actually needs is a real medical diagnosis and treatment - and I don't disagree with the challenge of getting that either, I think you're spot on with expertise availability.

my point is a General Practitioner (GP) is going to start off by treating the symptoms 1st while they try to figure out wtf is actually going on, they are not going to refer for experimental shroom therapy, they'll treat what they can see using the usual list of drugs and refer it out.

You're making assumptions on what the underlying condition is when in reality it might be none of these things, that's pretty dangerous advice imho, a standard treatment plan might actually work very well if it's something else while further investigation is done until the actual condition can be treated.

Now IF they are diagnosed with 1 of these conditions and the treatment the GP has tried doesn't work, that's a different story entirely.

This is better HR advice imho, lets the pros do their job

 

[iom]

I'm not a doctor, and what I'm about to write is not medical advice. That's fortunate because medical advice doesn't have much to offer here.

I want to get back to where I used to be. I used to be a fell runner and an ultra runner and now comparatively if I exert myself too much, I sense my nervous system senses the input as being too much and well I feel physically ill.

1. Set reasonable expectations for yourself. Ultra marathon running is extremely hard on the body and the heart. Maybe it's possible to "get back there", but how important is that to you versus being healthy enough to engage in day-to-day activities again? Also even in the best case scenario---a miracle if you will---it's probably going to take you a long time to fully heal. If you look for quick fixes, you will almost certainly be disappointed.
2. Learn pacing. This is absolutely critical. You want to avoid triggering the PEM as much as possible, because this sets back your recovery more in the long run. Instead, you want to be able to consistently push to your limits without exceeding them. Pushing to your limits repeatedly and consistently is how you train yourself, and hopefully over time your capacity will expand even if very slowly. This doesn't mean you won't still crash once in a while. There's no way to probe and discover your limits without risking a crash, but you can probe conservatively. Slow and steady wins this race.
3. Focus on fundamentals: diet, exercise, sleep, sunlight, and emotional well-being over herbs, supplements, peptides, and other exotic things. Really each of these fundamentals deserves a deep discussion being that personal needs and (in)tolerances vary a lot.
4. This won't be as helpful while you are still living with parents, but I strongly suggest taking precautions to avoid infections like COVID and flu. COVID especially has a very high likelihood to worsen the condition. Note that COVID reinfection can occur within months of a previous infection, and vaccination only reduces these risks marginally. The single best protection is to wear an N95 mask when in high risk areas. Risk increaes in areas that are crowded, indoor, and/or poorly ventilated over long exposure times. Infectious viruses disperse and travel on air currents like cigarette smoke, so distance alone will not reliably protect you.

Those are basic points. Regarding psychedelics, I recommend proceeding with utmost caution, titrating up very gradually from very low "mini doses" over multiple sessions. The psychedelic will act as a challenge to your body much like exercise, and you always want to avoid pushing over your limits. Where micro doses are too small to have noticeable effects, mini doses are enough to feel but not really trip.

With mushrooms specifically, potency varies dramatically even between specimins within the same batch. The solution is to obtain a large quantity of mushrooms, dry them if necessary, and then grind them to powder. The powder can then be mixed thoroughly, and you can trial small amounts as necessary to ascertain the potency. Something like 0.05 g is not likely to be active but might be felt if they are super potent. These trials should be done separately each time you powder more shrooms; hence, it's best to powder large amounts at a time.

Now I will give a brief summary of my approach. As a young adult, I used psychedelics pretty extensively, essentially for their mental/spiritual effects. Then for various reasons, I stopped using psychedelics for a long period of time. After having gone 11 years without, I felt a calling to return to them. At the time I felt partially recovered from Long COVID. Like I could pull weeds in the yard and only need a day of lying down to recover. I still had some nasty dysautonmia problems. For example, I'd reliably get light-headedness, nausea, malaise, and paraesthesia after eating my first meal of the day and would have to lie down for around half-an-hour to recover.

I first experimented with a phenethylamine psychedelic called 2C-D. I started with inactive doses and worked my way up. When I hit my first active dose, I noticed a few things. First off, it wasn't really fun at all. I felt uneasy and had no euphoria at all. When I ate in the tail end, my dysautonomic reaction actually seemed more severe. The next morning however, I felt different---in a good way, and eating that night triggered less reaction than normal. Following up with a slightly higher dose, I experienced a similar pattern---worsening of symptoms while in the active phase followed by substantial reduction for at least a week after.

I then followed up with experiments with other substances---mostly other phenethylamines, sticking to mini doses. I noticed when the doses got higher, I was more likely to experience an alarming dysautonomic reaction while in the trip. Hence, I proceeded very slowly. Bigger doses also gave greater and longer lasting relief, but sometimes I had to wait longer after the trip to get there---sometimes days or even a week or more for "full" doses. A key feature of the post-psychedelic window was an increase in capacity before PEM got triggered, allowing me to exercise with more intensity and improve my physical condition. Over a period of some months of repeated psychedelic sessions combined with carefully calibrated physical training, my symptoms continued to improve until they had largely faded.

As of now, I rarely experience any of the dysautonomias and can take "full" doses of psychedelics (but not too high just yet). I can do HIIT exercise on a regular basis and not crash. I still have episodes of hellishly extreme migraines, but this may be partly related to another long-term medical condition I'm dealing with---a terrible drug withdrawal syndrome which overlap and synergizes with this one. At least if I'm not in the withdrawl, it seems I can function quite well now. My health and fitness, at least on paper, are excellent for my age. Lastly, I can now go a very long time without taking psychedelics and my symptoms still don't return. I don't want to say I'm cured yet, but I feel pretty close.

To be clear, I don't advocate taking psychedelics too frequently. The smallest mini dose gave me about a week of relief. Larger doses lasted multiple weeks, and I think it's a good idea in general to use psychedelics sparingly---not just to avoid tolerance but because of how they act. IMO this is a huge benefit over almost every other drug of supplement which require daily use for therapuetic effect. Whatever risks that come from taking psychedelics are hopefully minimized by using them much less frequently than any other drug would be used.

I hope this information is helpful to you. Let me know if you want any clarification on anything, and I'm also available to chat by private message. Though, I don't think you can send me messages until you've made enough posts here. Best wishes!

 

[iom]

I don't doubt that you're right IF it's 1 of these conditions, however there's a danger of doing armchair diagnosis here when what OP actually needs is a real medical diagnosis and treatment - and I don't disagree with the challenge of getting that either, I think you're spot on with expertise availability.

I see your point, and I really don't mean to make any diagnosis. However, as someone with a lot of knowledge and experience in this area, the details OP has shared are strongly indicative. It is not certain, but strong.

I also know that IF the OP is actually suffering from one of these conditions, then his interactions with the medical system could actually do him more harm than good---probably a lot more harm than a series of carefully titrated shroom ingestions are likely to do. I'm not even close to exaggerating here. Like at the least, re(infecton) with COVID or flu in a patient can greatly worsen the disease course, and very very few doctors follow infection control proceudres which are adequate to protect patients. Infection control policies in most clinics and hospitals serve to reduce their legal risk, not to protect the health of patients. And like NIH was fucking funding studies on HIIT exercise as a Long COVID intervention, even though for many patients with PEM this can irrepairably worsen the condition.

So harm reduction is a very difficult needle to thread here. Probably the OP should get checked out to rule out things like cancer, but he/she should take precautions against suffering harm in the process including avoiding certain drugs and/or therapies which could rapidly escalate the condition.

You're making assumptions on what the underlying condition is when in reality it might be none of these things, that's pretty dangerous advice imho, a standard treatment plan might actually work very well if it's something else while further investigation is done until the actual condition can be treated.

I also speak as someone who has suffered extreme harm on multiple occasions by visiting doctors and trying standard treatment plants, which were prescribed based on the standard of care. This includes my current PCP even who is a good listener and quite competent as far as doctors go. To be clear, this is independent of my Long COVID. Because these doctors were following the standard of care, I have no legal recourse. I cannot sue anyone for my decades of degraded functioning, lost productivity, ten thousand+ hours of horrific pain and torture (and many more of milder discomfort), hours upon hours of self-care labor, the costs of all the supplies I'm dependent on,
or the profound burden placed on my partner who has been forced to care for me through all this.

Even more sad is that it's proving nighwell impossible to revise the standard of care based on the experiences of many patients like me and the few doctors who are sympathetic, despite efforts to organize, spare awareness, advocate for more research, and stop the ongoing harm. A great many of the victims are children, many subject to torture before they can even talk. I can't even get my PCP to take me seriously because it is not diagnosable. If it's not in the book, then it's not real and the patient is the problem. The vast majority of people suffering CFS/LC/dysautonomias/etc. are treated exactly the same way---like human garbage---by a profession which prioritizes covering its own ass over genuine patient care.

Now IF they are diagnosed with 1 of these conditions and the treatment the GP has tried doesn't work, that's a different story entirely.

This is better HR advice imho, lets the pros do their job

And if the pros are actively doing harm, then what? Like I said, this is a difficult needle to thread. I don't disagree with you that misdiagnosing as CFS/LC/etc. could do a lot of harm. I just don't know how to proceed at this point, and I can't stand the thought of allowing someone to suffer as I have when my knowledge might be able to help them.

 

[placebonaut]

Good balanced response @iom

And if the pros are actively doing harm, then what?

again IF the pros are doing harm then that's a different conversation.

Like I said, this is a difficult needle to thread. I don't disagree with you that misdiagnosing as CFS/LC/etc. could do a lot of harm. I just don't know how to proceed at this point, and I can't stand the thought of allowing someone to suffer as I have when my knowledge might be able to help them.

perfectly fine to provide advice and guidance on how to avoid the potential pitfalls and what to watch out for/how to handle the situation/the right questions to ask, that's just helping OP be informed and knowledgeable to support the best & quickest outcome possible - I'm all for that.

quite honestly the typical GP won't be an expert and won't know how to treat a rare condition themselves, however it might not be a rare condition, or it might be something else that they see much more frequently and the process works perfectly well for - you mentioned cancer, that's a good example of something that should be managed much better via the standard process & these days is general much more treatable, though there are lots of other more likely conditions than cancer that could explain things, and we don't want to scare OP unnecessarily....