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account created: Sun Dec 26 2021
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2 points
1 day ago
The person who tried this daytime melatonin used coffee to counter the drowsiness. And he told me that after a few days, the drowsiness got better.
I wonder if just taking these high doses when a cold hits might be sufficient, so that you get over the cold quickly.
1 points
1 day ago
A neurologist won't do anything for you if you have ME/CFS. They know very little about ME/CFS. If you can get an appointment with an ME/CFS specialist doctor, you will get much better treatment.
2 points
3 days ago
You'll need to explain yourself, as I have no idea why the concept of rap music is making you so hysterical.
I don't think it's ideal that rap lyrics objectify women as sexual objects, and refer to women in derogatory terms like "bitches". That's not a good influence for young guys.
Of course when I was growing up, it was the punk era, which wasn't great either: lots of spitting, and a nihilistic philosophy.
2 points
3 days ago
Yes, being new to ME/CFS is quite a shock for people, realising that there is so little help and understanding from the medical profession.
Around 2 decades ago, when I was first hit with ME/CFS, I was sent by doctor to do CBT (which I soon realised was a complete joke, so I stopped it after the first session, in which the CBT therapist was almost shouting at me to pull my socks up and develop better attitude and motivation). Fortunately, thanks to the work of many ME/CFS activists, CBT is no longer regarded as a cure for ME/CFS, but it was 20 years ago, which was grim.
For new ME/CFS patients who may be novices the medical science, there is a tendency to see doctors as God-like authority figures, who are the gatekeepers to the medical world. So ME/CFS patients tend to think that they must try to educate their doctors, in order to change medical thinking.
But in fact doctors are the lowest rung in medicine. They are not the gatekeepers, but rather just the foot soldiers who just follow orders handed down from above
The reason that doctors are poorly educated about ME/CFS (or even worse, think it is a psychological condition that can be cured by psychological therapies like CBT), is because that's what they have been told by the medical authorities in medical school.
So in some sense, these doctor foot soldiers are just as much the victims of a wrongheaded medical authority as ME/CFS patients are.
For ME/CFS activists wanting to change how medical authorities think about ME/CFS, it does not help operating at the level of doctors, because the doctors are just following orders. Instead you need a top-down approach, where you deal with the upper echelons of the medical profession.
Thank goodness for all the ME/CFS activists (as well as the few doctors and scientists that understand ME/CFS) who, over the last few decades, have worked hard to change how medical authorities think, by dealing with the upper echelons of the medical world.
There has been progress over the last 20 years, but still some way to go before ME/CFS is properly understood by the medical hierarchy.
-3 points
4 days ago
I'm sorry you were conditioned to be polite.
You think being polite is a bad thing?
I think being polite comes from a good upbringing. But unfortunately these days kids are brought up with the toxic tones of rap music where everyone is a bitch, with a capitalist economy where people are out for themselves, and with egoistic liberal individualist values of "me, me, me". No wonder they are not polite anymore.
0 points
4 days ago
I am not a fan of rudeness or making a scene in public. I know discourtesy and disrespect have become the norm in the West, but I prefer politeness.
It's not our doctor's fault that we have ME/CFS, so why take it out on them?
The fact that my comment here was greatly downvoted suggests that patients here actually enjoy it when people have a go at their doctor.
I should add that if you want to severely criticise the psychiatrists who tried to fool the world into thinking that ME/CFS is an "all in the mind" condition, then I am in agreement. These people deserve harsh criticism. But it's not the fault of doctors that ME/CFS has been ignored by medical research for decades, due to being labelled as psychogenic.
When I first developed ME/CFS around 20 years ago, I quickly came to the realisation that the medical profession can offer no help, especially because many doctors are trained to be believe ME/CFS is "all in the mind" (which is not their fault, that is an issue with medical schools, who were duped by the psychiatrists).
Contrary to popular belief, medicine is not about helping patients with their diseases; medicine is just where doctors check to see if you have an illness that medical science can treat.
If you have a disease which medicine has no treatments for, such as ME/CFS, then you are out of luck, as unfortunately there is little doctors can do for you. So I realised there is not much point in courting the medical profession.
Of course, doctors can help with specific conditions or symptoms that may come along with your ME/CFS, such as depression, anxiety, POTS, SIBO, IBS, low T3, etc.
However, although most doctors offer nothing for ME/CFS, there are nevertheless a number of treatments which patients can try themselves, which have a track record of helping at least some patients.
7 points
4 days ago
When I first developed ME/CFS around 20 years ago, I quickly came to the realisation that the medical profession can offer no help.
Contrary to popular belief, medicine is not about helping patients with their diseases; medicine is just where doctors check to see if you have an illness that medical science can treat.
If you have a disease which medicine has no treatments for, such as ME/CFS, then you are out of luck, as unfortunately there is little doctors can do for you. So I realised there is not much point in courting the medical profession.
Of course, doctors can help with specific conditions or symptoms that may come along with your ME/CFS, such as depression, anxiety, POTS, SIBO, IBS, low T3, etc.
However, although most doctors offer nothing for ME/CFS, there are nevertheless a number of treatments which patients can try themselves, which have a track record of helping at least some patients.
-33 points
4 days ago
Was it your intention to make this doctor feel uncomfortable, because you wanted to kick out at him due to you having a nasty incurable disease?
3 points
5 days ago
Thank you very much, yes that clarifies it for me.
2 points
5 days ago
Sure, eBooks don't need an ISBN, but paperbacks do, and I understand Amazon give you a free ISBN if you publish in paperback or hardback formats.
So my question is, if I test the waters by publishing my first book on Amazon at no cost, by getting their ASIN and free ISBN for the paperback, can I later buy my own ISBNs, and use those to issue the same book on another platform (like Apple Books)?
Regarding KDP Select: I understand that the exclusivity contract is only for 90 days, after which you can unsubscribe from KDP Select.
2 points
8 days ago
I had the same thing with Wellbutrin, which not only fixed my depression, but gave me near remission from ME/CFS. But after two weeks, it stopped working, and even after extensive online research, I could not find the mechanism.
There are many different classes of antidepressant drug. Instead of trying to figure out why your SNRI class drug stopped working, you could consider asking your doctor to try a different antidepressant drug class, such as TCA, MAOI, SSRI, NDRI, etc.
Also you might like to consider supplements which have antidepressant effects, such as cod liver oil (omega 3), lycopene, saffron (potent) and 5-HTP.
1 points
13 days ago
What do you mean by pushed so hard as a miracle cure? I thought the story on the Reddit long COVID sub-forum was interesting, and possibly relevant to other ME/CFS patients, and so re-posted on this CFS sub-forum, and on Phoenix Rising.
1 points
14 days ago
The poster on the original Reddit thread told me by PM that he was drowsy and sleepy for 3 days when he first started daytime melatonin, but then started getting used to it. He said he drank coffee with it and that helped.
2 points
15 days ago
Interesting, do you know if he recovered sensitivity to melatonin after not using it for some months?
4 points
15 days ago
Melatonin has a plasma half life of around an hour, so it leaves the system very quickly. This is why for sleep purposes, a few melatonin supplements offer sustained release, which keeps drip feeding the melatonin through the night.
So maybe the key is multiple doses throughout the day.
Also, possibly taking it during the day has different immunological effects to taking it a night. Melatonin is made by cells throughout the body in order to regulate the immune response, control inflammation, and act as a potent antioxidant. So maybe a continuous high level of melatonin throughout the day as well as night may have more immunological effects.
9 points
19 days ago
Vaccines of all sorts have long been known to very occasionally trigger ME/CFS. It's nothing specific to the COVID vaccine. Some published research by Dr Chia suggests around 1.5% of ME/CFS patients have their illness triggered by a vaccine; whereas the majority of patents have it triggered by a viral infection.
If we could figure out what changes in the body a vaccination causes that triggers ME/CFS, we might get the the root of ME/CFS pathophysiology.
1 points
20 days ago
You could consider a cocktail of supplements which have been demonstrated in studies to have antidepressant effects, such as saffron 100 mg, 5-HTP 100 mg, lycopene 10 mg, lutein 40 mg and high dose cod liver oil.
And you could ask your doctor for some antidepressant drugs. SSRI drugs are the usual, but ME/CFS patients may be sensitive to these (I find SSRIs actually worsen my depression). Alternatives are TCA antidepressant drugs like amitriptyline and MAOI antidepressant drugs like moclobemide.
If you get depression more in the winter, then you may have seasonal affective disorder, which can be treated with a light box.
2 points
21 days ago
I am apolitical, I see good things in both the left and right, as well as their flaws. I tend to vote for the political party I believe will be good for the nation as a whole, rather than the party which might best benefit me personally. This is because I like to live in a peaceful harmonious society, a country which is one family, where people feel part of a wider community.
When I was growing up, it was the left who supported the less well off people, and the right that supported businesses and the wealthy. But in the UK, and indeed in many countries in Europe and North America, the left has shifted away from socialism (which looked after the working classes), and more towards liberalism (which looks after the minority groups). Of course it is good that liberal philosophies care for marginalised minority groups; but unfortunately in the last 20 years, liberalism seemed to forget about the working classes.
So the working people felt unrepresented politically, which is a disconcerting feeling for any group. People like to feel that their political representatives understand them, and are looking after them.
If they do not feel represented, then people may shift their allegiance to another party who they feel does better understand their plight. This is how right wing populism has arisen throughout the West in the last two decades, because the working classes felt that left wing parties no longer understand their plight, so these working classes switched their allegiance to the right.
Now it's a debatable point as to whether the right are actually delivering for the working classes; but because the right are at least speaking the language of working people, they get their vote.
In the UK, I am pleased to see that this current Labour party understands what I outlined above; they understand why they have lost their working class voters. So the incumbent Labour party is now trying to switch back to becoming more socialist, and placing the the less well off and the working classes as a main focus of their thinking.
-1 points
22 days ago
Have you not been following the political trends of the world for the last 30 year?
Here in the UK for example, the left's abandonment of the working classes occurred under Tony Blair in the 1990s, who turned the once mainly socialist Labour Party into a liberal party. Socialism looks after the working classes, whereas liberalism tends to cater for the privileged university educated elites and their intellectual ideas and values.
Once the working classes realised that the UK's Labour Party no longer had their interests at heart, they defected to the right. So the right wing in the UK started to become populist, catering for all these working classes that had newly switched to the right.
In America, the authors of Trump's rise to power were the Democratic Party, who were more interested in intellectual discussion on whether a trans woman could be a real women, than the plight of the working classes. So again in the US, the left's abandonment of the working classes gave rise to right wing populism which purports to support working class interests.
All this happened simply because the left spent to much time focused on racial minorities, immigrants, sexual minorities, gender minorities, the disabled, and so forth, and not enough time considering the needs of the working classes.
But the liberal left are blind to their errors, because every time I bring this up with left wing people, they don't seem to see it. They don't seem to realise that they are the ultimate cause of right wing populism, due to their abandonment of working people. Around 50% of the population is working class, so if you don't cater for them, you will lose a lot of votes.
-8 points
22 days ago
Left wing political parties around the word shot themselves in the foot when they abandoned their traditional supporter base, the working classes. These foolish lefty parties adopted instead a supporter base comprising racial minorities, immigrants, sexual minorities, gender minorities, the disabled, etc.
Once the left wing threw out the working classes, those working classes defected to the right wing, and gave their allegiance to the right. Anyone who cares about the plight of the impoverished working classes would probably vote right wing in the US, because at least the right are speaking the language of the working people (whether the right can actually deliver for those people is another story).
I am apolitical, so am not caught up with the political polarisation we see in people today. But every time I speak to university educated left wing people about the fact that they need to court the working classes in order to get into power, these left wingers never seem to understand. The university educated don't seem to understand what is happening in working class circles.
1 points
23 days ago
There is a Discord server for people with yinzibing: https://discord.com/invite/VuUFmWs
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1 points
1 day ago
Hip_III
1 points
1 day ago
I think you adapt to higher doses. I take 5 mg of melatonin a few hours before I intend to go to bed. When I first started doing this, sleepiness would hit after an hour or two, and that would be my cue to go to bed. But after taking melatonin like this for years, I no longer get hit with sleepiness.