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Howard Bloom talks about recovering from MECFS

Messages
88
Maybe I'm a masochist, but I could have listened to them talk for 10 hours. I'm a sucker for autodidacts with a wide knowledge base. They fascinate me, and I probably look up to them more than anyone else.

I think he is in a similar place to a lot of us- treating ourselves well enough with supplements to live a fairly normal life. I wish I could schedule my sleep/wake times with same level of freedom he does! It doesn't seem I'm going to have a normal circadian rhythm anytime soon.
 

ebethc

Senior Member
Messages
1,901
Maybe I'm a masochist, but I could have listened to them talk for 10 hours. I'm a sucker for autodidacts with a wide knowledge base. They fascinate me, and I probably look up to them more than anyone else.

I think he is in a similar place to a lot of us- treating ourselves well enough with supplements to live a fairly normal life. I wish I could schedule my sleep/wake times with same level of freedom he does! It doesn't seem I'm going to have a normal circadian rhythm anytime soon.

agreed.... I can separate the substance or content from the personality. he's obnoxious, but I like his story.
 

bthompsonjr1993

Senior Member
Messages
176
I don't trust anyone with anecdotal stories, and am waiting for research before deciding what to try, but it's unfair to say he has been called unreliable, because he hasn't. People commented on his overconfident personality, they commented that he is self-centered, and things like that but no one knows if he is reliable or not.

When you say "he has been called unreliable by many" it sounds like you are talking about people who know him and who have experience with him.

We are all outside observers who have no idea which part of what he says is true and which is not.

As I said, I am not going to do what he recommends because I don't trust people to be objective and unbiased, but I don't like this unfounded personal attack.

Exactly. How incredibly hypocritical it would be of us to not believe him or write him off. Our community is on these forums every day lamenting the fact that people don't believe us. If we were to treat people like that (write them off as unreliable without actually knowing a thing about them in real life), then people not believing us would just be us getting what we deserve. Whenever someone speaks about their own personal health, I will always believe them, unless they are PROVEN to be lying. And I would think that everyone in our community would be of that mindset. Otherwise, how can we expect anyone to be that way towards us?
 
Messages
67
I don't trust anyone with anecdotal stories, and am waiting for research before deciding what to try, but it's unfair to say he has been called unreliable, because he hasn't. People commented on his overconfident personality, they commented that he is self-centered, and things like that but no one knows if he is reliable or not.

When you say "he has been called unreliable by many" it sounds like you are talking about people who know him and who have experience with him.

We are all outside observers who have no idea which part of what he says is true and which is not.

As I said, I am not going to do what he recommends because I don't trust people to be objective and unbiased, but I don't like this unfounded personal attack.

Have you read the comments beneath the videos of him? There are many people questioning the things he says on this and other subjects. It's not an attack on him, just a statement of fact.

There's a thread here which also talks about some of his larger-than-life claims, and this video in particular: https://www.s4me.info/threads/inter...-me-viewed-over-500000-times-in-1st-day.4283/

He claims, for instance, to do 700 press-ups a morning and claims to be super-intelligent. Yet he thinks amitriptyline is 'the thing' for stomach pain (it's not; the evidence here is sketchy at best). His books also claim he single-handedly started 'drug culture'.

He makes some outlandish claims, so I think it's reasonable to point that out to people.
 

drob31

Senior Member
Messages
1,487
His claims should be taken with a pinch of salt. He's been called unreliable by many.

That said, I'm on intranasal oxytocin spray, along with amitriptyline (both of which he mentions). Couldn't stand gabapentin, but these two drugs (and many others) have helped me.

It's easy enough to get the nasal spray via eBay.

I'm also on double doses of zinc and cysteine (both of which I've tested low for), and was on high dose vitamin D3.

How do you know if the spray is reliable?
 

Kenshin

Senior Member
Messages
161
How do you know if the spray is reliable?

Some of the sprays say 10iu per spray, that seems on par with the doses you woud get with injections of oxytocin,
but who knows how it is absorbed and if its one of those things that works straight away or takes days or months.
 

HowToEscape?

Senior Member
Messages
626
Have you read the comments beneath the videos of him? There are many people questioning the things he says on this and other subjects. It's not an attack on him, just a statement of fact.

There's a thread here which also talks about some of his larger-than-life claims, and this video in particular: https://www.s4me.info/threads/inter...-me-viewed-over-500000-times-in-1st-day.4283/

He claims, for instance, to do 700 press-ups a morning and claims to be super-intelligent. Yet he thinks amitriptyline is 'the thing' for stomach pain (it's not; the evidence here is sketchy at best). His books also claim he single-handedly started 'drug culture'.

He makes some outlandish claims, so I think it's reasonable to point that out to people.

hmmm about the 700 pushups, maybe they're abbreviated. Then again, he doesn't weigh all that much.

About being brilliant, that part is true. Being a writer is his 2nd or 3rd career, and the one book of his I read was brilliant ("The Genius of the Beast"), I recommend it. Not bad for one's third vocation.

A bit of hype and self promotion are part of his line of business; you can't be a music promoter without those qualities. Would you retain a promoter who advertises your band as "A moderately good act, possibly even above average."
 
Messages
53
There are certainly some valid, although mostly common sense, ideas in the pamphlet but for someone who claims to be really smart, there are some pretty gross mistakes too. Most people know cyanocobalamin is the absolute worst form of B12, more likely to do harm than good. And that magnesium oxide is possibly the worst form of magnesium because of extremely poor bioavailability.
 

bthompsonjr1993

Senior Member
Messages
176
There are certainly some valid, although mostly common sense, ideas in the pamphlet but for someone who claims to be really smart, there are some pretty gross mistakes too. Most people know cyanocobalamin is the absolute worst form of B12, more likely to do harm than good. And that magnesium oxide is possibly the worst form of magnesium because of extremely poor bioavailability.

He has walked the walk. He is the most dramatic recovery that I have ever seen from CFS. People wanted to know how he did it, so he simply told us exactly what he did. He even says that what works for him isn't for everyone. The point of the pamphlet is merely to tell us exactly how he did it. People can criticize it all they want, but it doesn't matter, because for HIM, the proof is in the pudding. We can take it or leave it.
 

pamojja

Senior Member
Messages
2,384
Location
Austria
but for someone who claims to be really smart, there are some pretty gross mistakes too.. Most people know cyanocobalamin is the absolute worst form of B12, more likely to do harm than good. And that magnesium oxide is possibly the worst form of magnesium because of extremely poor bioavailability.

Also not forget he recovered already 15 years ago. In 2003 very few knew about better forms of B12. Cyanocobalamin today is the absolute worst form, but only for some. And with a severe deficiency in Magnesium myself, I tried for years the better forms of Magnesium (citrate, malate, glycinate, taurinate, ascorbate, threonate, arginate and sulfate), and due to this post in 2013, started to trial Magnesium oxide too. And indeed, in my case only the total elemental amount of Magnesium in those various compounds was which counted, in alleviating very severe muscle-cramps. Saved a lot on expensive Magnesium compounds due to seeing through this myth still prevalent in 2018.
 
Messages
53
I think constructive criticism is always useful so I don't see anything wrong in pointing out that people should not use cyano-B12 or that magnesium oxide is at the bottom of the scale for bioavailability. If the goal is to provide useful information, then said information should be as accurate and as up-to-date as possible, wouldn't you agree?

And as far as magnesium, I often found magnesium citrate for the same price or lower than oxide, so I don't really see a benefit in use the oxide which, for most people, will yield inferior results. Nothing wrong if it works for you, but for the general public it seems like citrate has a much better ratio of cost/efficacy compared to the other forms.
 

pamojja

Senior Member
Messages
2,384
Location
Austria
I often found magnesium citrate for the same price or lower than oxide,

Their difference in price is marginal, but their different content in elemental magnesium isn't:

Magnesium Oxide ---> Elemental Mag = 60%
Magnesium Carbonate ---> Elemental Mag = 45%
Magnesium Hydroxide ---> Elemental Mag = 42%
Magnesium Glycinate ---> Elemental Mag = 18%
Magnesium Citrate ---> Elemental Mag = 16%
Magnesium Chloride ---> Elemental Mag = 12%
Magnesium Lactate ---> Elemental Mag = 12%
Magnesium Sulfate ---> Elemental Mag = 10%
Magnesium Taurate ---> Elemental Mag = 9%
Magnesium Malate ---> Elemental Mag = 6.5%

So to get at least the about 1.5g of elemental Magnesium - which in my case alleviates muscle-cramps - I need either 2.5g of Mg-oxide, or 9,375 g of Mg-citate, to reap the same effect. Almost 4 times the amount in capsules, and roughly in price!

Of course, I'm a special case in the severity of Mg-deficiency (already for almost 10 years) as well how much of a dose I tolerate. For most others the decision about which compound being best is mainly determined by which is tolerated (before diarrhea sets in).
 

JES

Senior Member
Messages
1,320
I think constructive criticism is always useful so I don't see anything wrong in pointing out that people should not use cyano-B12 or that magnesium oxide is at the bottom of the scale for bioavailability. If the goal is to provide useful information, then said information should be as accurate and as up-to-date as possible, wouldn't you agree?

Aren't B12 injections almost always made of cyanocobalamin and many people still seem to benefit from them?
 
Messages
67
Some of the sprays say 10iu per spray, that seems on par with the doses you woud get with injections of oxytocin,
but who knows how it is absorbed and if its one of those things that works straight away or takes days or months.

Yes. It's hard to know if anything is 'genuine' or not, but you can get it from your doctor if you're worried (that would be my first port of call).

Pure oxytocin is easily available from suppliers because farmers use it for animals. I started on the sprays then just bought the stuff from medical grade suppliers, because it was much, much cheaper. It's also less likely to be diluted or placebo (though they probably want return business, so even 'fake' medicines tend to have what they say in them).

I noticed a benefit quickly, but you should definitely know within two weeks. Of course, discuss it with your doctor first, because it can make you more emotional, territorial and apparently even more xenophobic (it makes you prioritise 'in-group relationships, which extends to large social groupings like race and nationality).

My reasoning for taking oxytocin was that hormones seem to be out of whack for many of us but it may work best for people with cold extremities. A few patients have tried it before and have had varied results. It certainly helps with my cold feet and I can feel that it makes me more affectionate too (which is good for me, because anhedonia can linger on the edges of fatigue sometimes).
 

pamojja

Senior Member
Messages
2,384
Location
Austria
If the goal is to provide useful information, then said information should be as accurate and as up-to-date as possible, wouldn't you agree?

Sure, that's why it's helpful not to copy anyone's successful regimen right away, but discussing it further with it's potential pitfalls. I would find it for example highly problematic if someone just did the same from his phamplet:

<
B Vitamins: a multiple B vitamin supplement of the heaviest dosage obtainable can be extremely useful. I take 100 mg multiple B Vitamin supplements five times per day.

Would amount to 2000 mcg of 'folic acid', or 500 mg of pyridoxine. Which are amounts which could be highly problematic to many, though not all. Always start with lowest possible doses (a fraction of a capsule..) and increase very gradual over weeks, months and years. But avoid always possible side-effects.
 
Messages
67
I'm glad his pamphlet was posted here. It's interesting reading, and I had been meaning to ask him for it to clarify some of his statements.

This bit seems key to me, though:

But the ultimate technique for dealing with insomnia is one I learned
very late in the CFS game. A technique that may have contributed to
my kicking CFS completely. Listen to your body. For example, to
repeat, don’t sit, lie down. Use your laptop or your tablet from a
horizontal position.

It seems like pacing was the most essential part for him. His sleep pattern is a good suggestion for some people, too. I know some people cannot settle into a 'normal' sleep routine.

I think I find this website more helpful: http://www.fiikus.net/?cfstreatment

Many of the same drugs are mentioned, but the author is less prone to exaggeration/excitement (things like the talk of 'surrealistic symptoms' in Bloom's pamphlet irritated me).

I also use some of the things from Jay Goldstein's list (such as 0.1% naphazoline eye drops), although I don't buy the general approach there of taking tiny amounts until something works.

It's interesting that Bloom doesn't talk about amitriptyline or gabapentin in this pamphlet, despite saying these were crucial in the interview above. This is the sort of thing that makes me think he gets over-enthusiastic about things.

How can they both be essential, and yet be excluded? And yet, here in his pamphlet he claims entirely different substances were essential.

I know people like this. When they've just seen a film they like, they'll say it's the best film ever and wildly inflate its importance. Then they'll forget about it when they find another film that's new (to them), which is the new 'best thing'.

This pamphlet's helpful, but you do have to keep your inner cynic close by when deciding what's hype and what isn't.