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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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Supplements do not have any real effect on symptoms

leokitten

Senior Member
Messages
1,595
Location
U.S.
@leokitten I am going to back out of this thread and all your threads to avoid further misunderstandings and stress for both of us. You only know bits and pieces of my story and vice versa.

My goal was to try to help you from never reaching the point that I am at now. My workplace held my job for me for over one year hoping I would come back and I tried aggressive treatments and everything I could think of yet my illness progressed nonetheless.

I was hoping to avoid you this pain and suffering on the off chance that working could worsen the progression of your illness. I am not a judgmental person and wish you no harm. You will not hear from me again on this topic. Best wishes and peace to you on this journey.

Thank you for telling me more about your situation. May I ask @Gingergrrl if you were to go back in time what would you have done differently?
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
Phoenix Rising is not just for people with ME/CFS who are too ill to work and it's not just for people with moderate to severe ME, it's for all of us and we are all equally important. I'm constantly getting these negative posts from certain users because I try to discuss issues and problems for people with milder ME/CFS.

Yes I understand you've gone through a lot of terrible things because of ME and for many it's destroyed your lives, but please don't take it out on or project your anger on me I had nothing to do with it.
@leokitten - I got the same reaction when I mentioned that I can exercise most days and push through my PEM until I over do it and then crash for days to weeks. Several people suggested that possibly I was misdiagnosed and didn't have CFS. Not all of us have severe CFS and can function somewhat normally to a degree. I can't work full time but do work part time from home two weeks each month. I don't drive as my doctor doesn't think my attention span is so great. But I can shop for groceries even though I usually fall asleep afterwards when I get home because of the exhaustion.
 

geraldt52

Senior Member
Messages
602
@Kati
...People with milder ME/CFS are really underrepresented on PR and it's dominated by people with more severe forms that didn't go on aggressive treatment early in their illness when they were still working. So they really don't know what it is like for people like me.

I think this has been a very good thread and important thread , leokitten. I don't think I agree that people with milder CFS are underrepresented on PR, but it's only logical that the less ill may not be as active, as they still have a life outside of their illness, however difficult it might be. I also suspect that quite a number of people on PR, definitely including myself, tried any number of aggressive treatments while they were still working, as you are doing.

I know for a fact that the aggressive use of Klonopin, in an effort to keep working, hastened my decline and made my life much worse than it had to be. It is the single worst decision I made in the 30+ years of being ill with CFS. I think that's what people are trying to convey...that doing everything you can to remain working, including aggressive treatment, can be exactly what tips one over the edge to where the choice is made for you...and then there is no choice but to quit work and suffer the consequences. You have to choose, and I think everyone really respects that, but you should know that others have walked the path you're on before you, and are relating their experiences in the hope that it will help you choose. Hope for the best, plan for the worst.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
I think this has been a very good thread and important thread , leokitten. I don't think I agree that people with milder CFS are underrepresented on PR, but it's only logical that the less ill may not be as active, as they still have a life outside of their illness, however difficult it might be. I also suspect that quite a number of people on PR, definitely including myself, tried any number of aggressive treatments while they were still working, as you are doing.

I know for a fact that the aggressive use of Klonopin, in an effort to keep working, hastened my decline and made my life much worse than it had to be. It is the single worst decision I made in the 30+ years of being ill with CFS. I think that's what people are trying to convey...that doing everything you can to remain working, including aggressive treatment, can be exactly what tips one over the edge to where the choice is made for you...and then there is no choice but to quit work and suffer the consequences. You have to choose, and I think everyone really respects that, but you should know that others have walked the path you're on before you, and are relating their experiences in the hope that it will help you choose. Hope for the best, plan for the worst.

Klonopin by itself is not what I wouldn't consider aggressive treatment, I think people might be misunderstanding what I mean by that.

What I mean by aggressive treatment is taking effective dosages of medications and supplements that have been shown to have disease modifying capabilities, either scientifically or anecdotally, as well as treatment of symptoms in particular sleep, and taking these all in parallel (not one or a few at a time). This is what I've been taking together, every day for over 1.5 years or so (starting 9 months after I got ME/CFS):

Valcyte
Famvir
Immunovir
Doxycycline
LDN
Memantine
Celecoxib
Gabapentin
Clonidine
Tiagabine
Tons of different supplements shown to help in ME/CFS
 

geraldt52

Senior Member
Messages
602
Klonopin by itself is not what I wouldn't consider aggressive treatment...

Nor would I, leokitten, but the Klonopin was just one piece of a much larger picture that it would be pointless for me to go into, even if i remembered the details. I mentioned the Klonopin as I have zero doubt that it was the straw that broke the camels back, and began my continuous spiral downward. And, I took the Klonopin specifically to help me keep working (when I should have just quit), based on Cheney's nonsense theory about it being "neuro-protective", which as near I as can tell now was pulled out of thin air.

It may interest you to know that during the XMRV fiasco, when Dr. Jamie (Jamie Deckoff-Jones, MD) was very active with her blog, she commented that the CFS patients that she saw in her practice who were doing the best were those who had received virtually no "treatment", and the patients who were doing the worst were those who had received the most "treatments". I absolutely believe that was true, and I can say unequivocally that had I known all along what I know now I would have no part of probably 90% or more of the treatments that I received over the years. I wish they had just been a tremendous waste of money that I couldn't afford, but the harm they did was a far greater loss. Though each one deceptively seemed to be helping something when I first started them, I was really just chasing mirages.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Than there is DRACO which a targeted drug that kills viral infected cells.

I'm sure his father will hear about this.

(Sorry, I couldn't resist!) :D

This is the second time I've heard that mild/moderate cases are under-represented. I haven't counted people up, but I'm minor/moderate. Used to be more moderate, am now tending towards mild. That 'point of no return' place I keep hearing about scares the beejesus out of me, and so I take pretty careful care of myself with very mild exercise (like walking) and a variety of supplements already discussed, as well as management strategies that involve being very aware of my body and its reactions, and stopping at any early warning signs that arise. My diet is also what others would probably call "extremely fussy", but it's what makes my body respond well, so I stick to it.

In short, @leokitten, I am in the same boat as you. Even if I can't work full-time, I can work about 30 hours a week from home and still do all right. I can go out with my friends and walk around awhile (when I am feeling well, which is more and more the case). I do my own driving and grocery shopping.

But everyone here can remember when this was true of them, too. They are no longer in this position. Things have changed.

There are a few 'struck by lightning' cases of ME: 'I had the flu and next week I couldn't remember my own name' - but it seems to me that even for the 'fast onset' group, 'fast' doesn't mean 'instantly'. The illness developed rather than appeared. Every case is different, and there's no way to know if something done a bit differently could've helped. Unless there was one moment where it was obvious: a point of no return, a specific decision with disastrous consequences which, in some cases, there is. Several people here have shared their stories of this point of no return.

I quit my job before it killed me, but only just: and doing so was the opposite, my 'point of return'. Today I feel three or four times better than I did a year ago... but the intervening time. I can't even describe it. It makes me so grateful to be where I am right now, and that feeling is just as huge as spectre of my previous level of ME, in proportion to it. I am also acutely aware there are pathways I could travel that would lead me back.

Did I have a choice to quit my work? Of course. It was just the only reasonable one, given the consequences of continuing. At the time, it felt awful yet inevitable, but even in the moment I knew I'd made the right choice, and now I am proud I was brave enough to make it. :redface:

In short: this thread is emotionally charged because it talks about having to leave work (a very stressful decision that most of us have had to face):nervous:, and because some of the comments here can be taken to mean that 'pushing through' until a crash occurs is a necessity for anyone who wishes to be a responsible adult. "I can't quit my job because I am responsible to others", implies that no one who is responsible to others (which is all of us!) can/should ever make the decision to quit their job (which many of us have, in fact, done). However, I don't believe the post was meant to cast doubt on others' actions in any way, shape or form, but to express the frustration we all feel when we face job-related issues.:(

@leokitten - your decision is yours to make. You do have the choice open to you to quit, and saying you 'can't' is a way of avoiding facing the fact that the decision is your own. Your reasoning so far seems that you will not have a point of no return because your ME is not severe enough for this to happen, but this reasoning is fallacious. The reason some of us are so ill is the point of no return, rather than points of no return only happening to very ill people. You will either make significant accommodations to your condition, or your condition will worsen: those are your two choices.

There are not two options jobwise, however: continuing to run yourself into the ground, or giving up entirely on life and sitting alone in the dark. Begin looking around for jobs that require less activity, say 'no' to things you know will cause you physical or emotional stress, and start doing so proactively rather than when you're already at wit's end. Start making plans. We're all in this for the long haul, and your health decisions now will affect you long-term.

We are all here with you, with twenty questions for every hard-won answer. Listen to the answers we give; we're not just blowing smoke.

Peace out, guys. Saying 'no' to this stressor and stepping on outta here... :cool:

- J
 

Valentijn

Senior Member
Messages
15,786
They are being very negative in their choice of words and saying that I have a lack of understanding, when in reality they are failing to understand that everyone's situation is different, everyone's illness is different, that what happened to them might not happen to others, and that some people's life situation mean that certain choices could actually be far worse.
I think some moderate and severe patients might be getting a little annoyed because some mild patients who are working are insisting that moderate and severe patients don't understand what it's like to be a working mild patient. Except we do ... all of us were there at some point. Just in some cases it was a pretty brief amount of time, as our condition continued to quickly decline after onset.

When I got sick, I was in intensive Dutch classes 4 days per week and volunteering at a tenant assistance organization for half of the 5th day. I stuck it out until the class ended, even though it was pretty awful. I'd be exhausted by the time I got to class, I'd have to walk up a flight of stairs in an old building, and then I'd be struggling just to stay upright for two hours. Then two buses and a train to get home, with about half a mile of walking, and I'd collapse into bed for the entire afternoon with severe chills. Then I'd be a zombie all evening, and go do it again the next day.

I did this for two months. I'd wanted to continue on with the next level language class, but I completely failed the spoken exam and couldn't proceed. It was bewildering because I hadn't noticed my many mistakes, but it was also a relief because the decision was made for me. I was getting a break whether I wanted it or not.

I continued with the volunteer work nearer to home 4 hours per week, but soon was sick for half the week following the day that I was there. I had a wonderful boss with health issues of her own, and she was the one noticing when I needed to sit down. She insisted on driving me home a couple times when I was in particularly bad shape, but mostly I slowly walked several blocks to the bus stop, and focused on staying upright while waiting for the bus since there was nowhere to sit. She wanted to keep me as a an employee after the original 6 month volunteer stint expired, but I simply could not keep doing it. I cried at the end-interview, and that was that.

No more volunteer work, no more free intensive language classes ... things were just getting worse, and I knew I needed to rest. I was ordered to give her a call if my condition improved enough, but I guess that was nearly 4 years ago now.

So basically ... we all know what it's like to be a mild patient. We went through that on our way down to wherever we ended up. We all know what it's like to abandon careers, aspirations, and the activities which tell society that we are productive members of it. The only difference is that we either saw the inevitable reality coming toward us like a rather large truck and jumped out of the way at the last moment, or we got crushed by it from behind and became literally unable to continue.

But we do understand what life is like before the truck comes along, even when it can only be seen in the distance. And some might accordingly feel a little defensive when someone suggests that we don't understand :p
 
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heapsreal

iherb 10% discount code OPA989,
Messages
10,099
Location
australia (brisbane)
Klonopin by itself is not what I wouldn't consider aggressive treatment, I think people might be misunderstanding what I mean by that.

What I mean by aggressive treatment is taking effective dosages of medications and supplements that have been shown to have disease modifying capabilities, either scientifically or anecdotally, as well as treatment of symptoms in particular sleep, and taking these all in parallel (not one or a few at a time). This is what I've been taking together, every day for over 1.5 years or so (starting 9 months after I got ME/CFS):

Valcyte
Famvir
Immunovir
Doxycycline
LDN
Memantine
Celecoxib
Gabapentin
Clonidine
Tiagabine
Tons of different supplements shown to help in ME/CFS


Interesting as i have used most of those mentioned and remain on about half of them. For me they have helped , not a cure. Im still working part time 30hr week. I actually think if i stopped working i could improve more.

I think we need to rest more to help us recover and recuperate as treatments such as meds and supps are only half the battle.

I'm in a similar boat with working, in that its easier said than done. I think i will have to collapse at work before i would be considered for any type of disability.

Also I'm not sure either if we say had 12 months off work, rested aggressively and continued treatments , if we would maintain any improvements if we went back to a pre cfs life style.

are we partially broken and can function well if not working etc but going outside these boundaries brings back symptoms . It seems from others stories that they have permanently broken and more severe by continuing to push, if they had an option or not.

Im trying to keep the wolves from the door and avoid being permanently broken. Im just trying to hold out until my kids finish high school which is in 2 and a half years. Than i will reassess things, down size and reduce work further. Hopefully some small investments can help clear some debts and make it easier to reduce my work.

I also wonder if those on disability etc if they improved on treatments and were functioning at a level where they could work, would they be able to continue at a reduced level of pre cfs function like work part time.

its just all unknown if we can overcome cfsme permanently or not. Some have but they would be a minority .
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
She wanted to keep me as a an employee after the original 6 month stint expired, but I simply could not keep doing it. I cried at the end-interview, and that was that.

Valentjin! :hug:

Also, I nearly made the exact same 'truck' metaphor but couldn't make it sound like severe patients hadn't 'seen it coming' or 'gotten out of the way' fast enough, and it sounded blame-y in my head. Thanks for saying it better. :)

-J
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
Nor would I, leokitten, but the Klonopin was just one piece of a much larger picture that it would be pointless for me to go into, even if i remembered the details. I mentioned the Klonopin as I have zero doubt that it was the straw that broke the camels back, and began my continuous spiral downward. And, I took the Klonopin specifically to help me keep working (when I should have just quit), based on Cheney's nonsense theory about it being "neuro-protective", which as near I as can tell now was pulled out of thin air.

It may interest you to know that during the XMRV fiasco, when Dr. Jamie (Jamie Deckoff-Jones, MD) was very active with her blog, she commented that the CFS patients that she saw in her practice who were doing the best were those who had received virtually no "treatment", and the patients who were doing the worst were those who had received the most "treatments". I absolutely believe that was true, and I can say unequivocally that had I known all along what I know now I would have no part of probably 90% or more of the treatments that I received over the years. I wish they had just been a tremendous waste of money that I couldn't afford, but the harm they did was a far greater loss. Though each one deceptively seemed to be helping something when I first started them, I was really just chasing mirages.

It's true that unfortunately with this disease you have to do a lot of your own research on medications etc to know what's best and actually tell your doctor what to prescribe you, even some of these ME/CFS "experts", which half of them im certain are just preying on us to make money. Don't we all love the blurb they all give us, "yeah I don't take insurance because, well, I can't give you the care and attention you need if I took insurance...". LOL

Cheney is a fool if he's giving people benzos like Klonopin, they provide a short term effect that isn't worth it given the known long term consequences, in particular that they are extremely addictive, cause brain damage and atrophy, actually make sleep arctitecfure worse and reduce SWS, and disturb your immune system (one many people don't know, GABA-A agonists mess up your immune system).

@geraldt52 i have to politely disagree with you on the aggressive treatment though. The first 9 months of my ME it was such a downward spiral with things getting worse quickly that I am fairly certain if I didn't start the treatment I listed I wouldn't be where I am today. Approx 4-6 months after starting treatment the downward spiral slowly turned and I started stabilizing, and while the pushing and crashing of full time work have their effects and possibly do damage things are more or less stable for about a year now. Even though it's impossible to scientifically prove I am fairly certain this is due to the medication.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
Interesting as i have used most of those mentioned and remain on about half of them. For me they have helped , not a cure. Im still working part time 30hr week. I actually think if i stopped working i could improve more.

I think we need to rest more to help us recover and recuperate as treatments such as meds and supps are only half the battle.

You've said many things in this post that I've been thinking about as well. Yes you are right @SOC said the same thing to me it is true that rest is the other half of the battle.

I'm in a similar boat with working, in that its easier said than done. I think i will have to collapse at work before i would be considered for any type of disability.

Also I'm not sure either if we say had 12 months off work, rested aggressively and continued treatments , if we would maintain any improvements if we went back to a pre cfs life style.

I totally agree, you have to basically collapse to get disability.

As I stated in the post with bullet points I keep wondering that if I stopped working full time and then started working part time outside of my career with a huge pay cut that with all the new stresses of barely being able to make ends meet and terrible insurance and fewer treatment possibilities that this wouldn't actually be less exertion and less pushing in the end. That in the end I would have made an irreversible decision that didn't really have any benefit.

Im trying to keep the wolves from the door and avoid being permanently broken. Im just trying to hold out until my kids finish high school which is in 2 and a half years. Than i will reassess things, down size and reduce work further. Hopefully some small investments can help clear some debts and make it easier to reduce my work.

This is exactly my line of thinking, if I can just maintain this for another couple years then hopefully I will be able to get Rituxmab since with a good job you have excellent insurance that pays for everything. Without the money to afford good insurance if it turns out Rituxmab works for many people I think here in the U.S. cheaper insurance plans and Medicare will just not pay for it.

I also wonder if those on disability etc if they improved on treatments and were functioning at a level where they could work, would they be able to continue at a reduced level of pre cfs function like work part time.

You've stated nicely here another observation that I've been wondering as well, that very few people who've cut back and stopped working have ever returned to the life they had before disability, even with all the rest and treatment.

It could be like many stated here that they pushed too far to that point of not return when things got terribly worse. It could also be that at least in the U.S. it's much harder to get the right medications and treatment on Medicare.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
You will either make significant accommodations to your condition, or your condition will worsen: those are your two choices.

While I don't dispute this, I suspect that for many of us, we are on the train ride to hell, regardless of medications, supplements, employment status, CBT, exercise, or anything else we can think to do or not do.

I think some patients tend to blame themselves for getting worse: "If only I had tried X or not tried Y, then maybe I might not be as sick." This is an attitude imposed on us by a culture that prefers to blame the victim rather than carefully examine actual policies and who imposed them.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
As I stated in the post with bullet points I keep wondering that if I stopped working full time and then started working part time outside of my career with a huge pay cut that with all the new stresses of barely being able to make ends meet and terrible insurance and fewer treatment possibilities that this wouldn't actually be less exertion and less pushing in the end.

It's a special kind of Hell when one finds oneself on the dole with little chance of ever getting off. As soon as one set of gatekeepers allow us benefits, some other scumbag bureaucrat decides we don't really "deserve" them after all, and the fight to retain meager benefits is back on. Again.

A few months ago I submitted the latest round of paperwork required to retain my generous food stamp ration of $16 a month (???) and the assortment of programs that pay for various pieces of healthcare access. Bureaucrat A was supposed to send something to Bureaucrat B by a certain date.

That did not happen. Instead I received a notice from Social Security that Medicare payments would suddenly be deducted from my meager check. Another notice from the state informed me that food stamps would end. There were also notices from the Medicare drug plan company and other agencies that I can't recall.

So I called the moronic state welfare people, who told me that my paperwork was actually all in order, and my file was on somebody's desk waiting to be processed...:bang-head::bang-head: How is it that some yahoo fails to do their job and *I'm* the one who loses benefits?

And it never ends. There is a constant barrage of forms to fill out to continue the benefits. Miss one deadline, or fail to submit the exact right piece of paper, and the benefits disappear...
 

geraldt52

Senior Member
Messages
602
]... i have to politely disagree with you on the aggressive treatment though. The first 9 months of my ME it was such a downward spiral with things getting worse quickly that I am fairly certain if I didn't start the treatment I listed I wouldn't be where I am today...

Six years in to being sick and after an incredible number of aggressive "treatments" I had a remission, where I functioned probably at 80% or better, that lasted 4-5 years. One could easily conclude that my remission was due to one of the aggressive "treatments" I had, though it was impossible to tell which one. At that time I probably did think that my strategy of treating my illness in every possible way had worked out.

Unfortunately, when I began to relapse again after 4-5 years, every "treatment" that I had previously had was repeated, at length, with absolutely no result. Why would an effective treatment not work a second time? I suspect that my remission had little or nothing to do with any treatment, and I was just the beneficiary of the remitting/relapsing nature that CFS is known to exhibit. I firmly believe that it was that second bout of aggressive "treatments" themselves, and my steadfast belief that I could work through it, that finally knocked the wheels off my wagon...apparently permanently.

I now look at CFS as a highway, with no known exits and no place to turn around. At the end of the highway is a person living life in a bed, in a darkened room unable to tolerate even light or sound. Once you're on the highway, you can continue driving as fast as you think you safely can, or you can slow way down and use every rest stop as long as possible...either way hoping against hope that someone will build an exit before you get to the end.

I've done most everything on your list, leokitten, and in the end I don't think they changed a thing. As others have said, an extremely restrictive diet and extremely restrictive pacing are the only things that have had any lasting impact for me...and they are both free, and without side effects, known and unknown.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
If antibodies indeed are causing havoc systemically, then in a large percentage of the time, supplements will have almost zero effect.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
i have to politely disagree with you on the aggressive treatment though. The first 9 months of my ME it was such a downward spiral with things getting worse quickly that I am fairly certain if I didn't start the treatment I listed I wouldn't be where I am today. Approx 4-6 months after starting treatment the downward spiral slowly turned and I started stabilizing, and while the pushing and crashing of full time work have their effects and possibly do damage things are more or less stable for about a year now. Even though it's impossible to scientifically prove I am fairly certain this is due to the medication.

My two children and I also got worse over the 9 months following illness onset - we collected more symptoms and the symptoms got worse. Then we improved, each to our own plateau where we remain till now, with occasional minor variation.

At the 9 month mark we were trying various supplements and medications, but nothing heavy duty that was really consistent across all three of us. What was fairly consistent between us over that first 9 months was the pattern of new or predominating symptoms, from mainly gastrointestinal, joint pain, migraines, heading on to orthostatic issues and then we all started getting pins and needles/numbness at the same time and so on.

I've mentioned elsewhere on PR, my daughter tried to keep up her former high level of activity, unsuccessfully but still did a lot including school and multiple sports. Two years after onset, she is now essentially well. I tried to keep up my former high level of activity, unsuccessfully and now have mild to moderate ME. My son mostly rested (he was encouraged to do so by particularly bad joint pain). He also has mild to moderate ME now.

My conclusion from all of this is that you should do the best you can with the knowledge you have, and that includes avoiding PEM as much as you can. But there isn't much point in blaming yourself for twists and turns in your illness. The illness is tough enough without self-blame based on speculation.

The corollary of that is that some scepticism about seeming improvements from treatments without strong trial data is warranted too.

While I don't dispute this, I suspect that for many of us, we are on the train ride to hell, regardless of medications, supplements, employment status, CBT, exercise, or anything else we can think to do or not do.

I think some patients tend to blame themselves for getting worse: "If only I had tried X or not tried Y, then maybe I might not be as sick." This is an attitude imposed on us by a culture that prefers to blame the victim rather than carefully examine actual policies and who imposed them.

yep, @Jimelis, I agree.
 

Bansaw

Senior Member
Messages
521
Or are people wrongly associating a supplement or combination of to symptom improvement when it really had nothing to do with it?
Perhaps sometimes a person will take a supplement and improve and after while it becomes the "new normal" for them. They forget the improvement until they stop taking the supplement and the symptom comes back.
Or, often it takes more of a substance to have the desired affect the more you take it. Eg: A person I knew took painkillers for a while at a medium dose. After six months, she had to increase the dose to acheive the results she was getting before.

Me personally, I am aiming at fixing my gut. I am convinced that it is the key to good health. My absorption is poor as confirmed by my mineral hair test. I took a protracted course of antibiotics and am trying to build back up. I just ordered some Mirysian probiotic from Japan and am starting with some Resistant Startch soon to see what that does.
But , like you probably, I've spent literally thousands on supps that have had no effect. I don't think most of them absorbed properly. I've had most success with teas, dissolved powders and drops rather than pills and capsules.
 

Sidney

Senior Member
Messages
146
Location
East Sussex, U.K.
This is exactly the only thing that improves my symptoms, resting as much as possible outside of work and with an insane amount of rest I do start feeling better. No drug or supplement has ever made any great effect like this really.

The problem is that it takes an impossible amount of rest. Back in late 2013 (10 months with ME/CFS) I had a short time when work was going pretty easy and I purposely went to bed the moment I came back from work until the next morning and aggressively rested on the weekend and after a bit over two weeks of doing this religiously I felt almost normal again and most symptoms subsided. But it doesn't ever last once I stopped it because it was just too much then everything just got worse again.



Sounds like placebo effect?



I agree, with all the labs looking for obvious issues I found out I was low in vitamin D and iron and have been supplementing both for a long time. They have slowly come up to good levels but still absolutely no effect symptoms.



This also to me sounds like placebo effect. I'm not meaning it in any negative way, placebo effect accounts from approx 20% of the efficacy of drugs that are known to really work so it's something significant.

I think the reason many of us continue to take supplements is because of this and because of the fear that if we stop we might get worse, but not because we have any proof that they are doing anything real?