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Discussion about concerns that some dodgy treatments get promoted by patients to patients.

Hip

Senior Member
Messages
17,824
The only answer I can think of would be a type of chemotherapy where apoptosis is triggered in the affected cells, analogous to metastasized cancer.

Have you looked up the antiviral called DRACO? There was some talk about getting this very innovative antiviral concept crowdfunded and brought to market.


The DRACO drug works by targeting dsRNA, which is only produced in cells that have been infected by viruses. DRACO is a molecule which combines an dsRNA-binding protein bonded to another protein that induces cells to undergo apoptosis. Very simple. It's drawn into virally-infected cells, and then kills them. Works for the majority of viruses, since nearly all viruses generate dsRNA in cells. So it's a universal antiviral.

DRACO was originally funded by some military organizations for anti-bioterrorism purposes, but then they seemed to drop the project. I am not sure why. I think DRACO would likely cure ME/CFS.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
If I had that outlook I wouldn't do it and I would focus on traditional research and accepted standards. However, I don't have that theory because it doesn't explain my symptomatology and history which clearly supports an infectious basis. Specific antibiotics are not curative because they are bacteriostatic, however they do give a clear herxheimer reaction which would not be present if it were merely an autoimmune disease, etc.

Can you tell us how you would distinguish a Jarisch-Herxheimer reaction from ME symptoms?
 
Messages
14
I am not sure you need to worry about the heavy metals in pharmaceuticals - it is the pharmaceuticals you need to worry about!

Personally, I am very concerned about both the heavy metals used in pharmaceuticals and the 'pharmaceuticals' themselves and so should everybody with ME/ CF. The accumulation of such metals from whatever sources are particularly detrimental to those patients that are MTHFR gene compromised.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
"If your friends jumped off a bridge, would you ?" ☺

I couldn't tell you how many times I heard this as a child or said this to children. Imho, this applies here too.

It goes without saying that people have traded info since the beginning of time in an effort to help each other. Since we share the trauma of me/cfs and the lack of medical care it's only natural for us to try to help each other. Emotional support is part of that but we're all looking for answers.

Sure people and "patients" will be wrong sometimes but it doesn't stop us from trading info. We don't expect our friends, family or fellow forum members to be right all the time. And they know that we'll be wrong sometimes too. But we respect each others efforts and will continue to share info.

Imho, the problem is that patients do expect medical professionals to be right. Esp the ones with letters like MD after their names.

In the US we're bombarded with messages that we need to see our doctors for every little thing and regularly to get checked for things we don't have but may someday get. This leads people to become dependent on people we think know what they're doing but who clearly don't have all the answers. And apparently some can be motivated by greed.

Learning just how often they're wrong is a real eye opener for some of us. Which imho is why health forums are so popular. For me, learning that medicine was divided between those who follow big pharma's and the AMA's guidelines and those who believe in finding the cause of an illness was mind boggling.

Fwiw, I moved recently and am now living among an older group, 70+, of people. I expected them to be doctor worshipers and was pleasantly surprised. I haven't figured out yet why they think so little of doctors because I was shocked by this. But wisdom and common sense come to mind. Most mention money / greed but they also didn't grow up running to the doctor for everything.

Tc .. x
 
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xchocoholic

Senior Member
Messages
2,947
Location
Florida
Personally, I am very concerned about both the heavy metals used in pharmaceuticals and the 'pharmaceuticals' themselves and so should everybody with ME/ CF. The accumulation of such metals from whatever sources are particularly detrimental to those patients that are MTHFR gene compromised.

Dr Oz just did a segment on mercury in flu vaccines. Knowing what our govt approves is frightening.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
A
Have you looked up the antiviral called DRACO? There was some talk about getting this very innovative antiviral concept crowdfunded and brought to market.


The DRACO drug works by targeting dsRNA, which is only produced in cells that have been infected by viruses. DRACO is a molecule which combines an dsRNA-binding protein bonded to another protein that induces cells to undergo apoptosis. Very simple. It's drawn into virally-infected cells, and then kills them. Works for the majority of viruses, since nearly all viruses generate dsRNA in cells. So it's a universal antiviral.

DRACO was originally funded by some military organizations for anti-bioterrorism purposes, but then they seemed to drop the project. I am not sure why. I think DRACO would likely cure ME/CFS.

No, I haven't heard of it but it sounds like an interesting, expensive but risky approach because it has to prove safety to the FDA.

By elimination challenge. A Herx flares symptoms far above the baseline range. The main problem is that many of the supplements (alpha lipoic acid, resversatrol, knotweed, milk thistle, quercitin, green tea and tobacco) being pushed by the gurus as helpful are actually harmful because they are anti-apoptosis and suppress the reactions; so people think they feel better because there are fewer free radicals but it really is just that they suppressed their immune system. In a way,the experiment drug rituximab has a similar effect because reducing B cells is another way to mask apoptosis derived pain in a chronic infection.

Can you tell us how you would distinguish a Jarisch-Herxheimer reaction from ME symptoms?
Personally, I am very concerned about both the heavy metals used in pharmaceuticals and the 'pharmaceuticals' themselves and so should everybody with ME/ CF. The accumulation of such metals from whatever sources are particularly detrimental to those patients that are MTHFR gene compromised.

That reminds me of the mercury in the thimersol they were using in vaccines (along with contamination by live viruses) . The current poison du jour is high levels of Roundup pesticide in food that are killing honeybees and colonic bacteria.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
Can you tell us how you would distinguish a Jarisch-Herxheimer reaction from ME symptoms?

By elimination challenge. A Herx flares symptoms far above the baseline range. The main problem is that many of the supplements (alpha lipoic acid, resversatrol, knotweed, milk thistle, quercitin, green tea and tobacco) being pushed by the gurus as helpful are actually harmful because they are anti-apoptosis and suppress the reactions; so people think they feel better because there are fewer free radicals but it really is just that they suppressed their immune system. In a way,the experiment drug rituximab has a similar effect because reducing B cells is another way to mask apoptosis derived pain in a chronic infection.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
Dr Oz just did a segment on mercury in flu vaccines. Knowing what our govt approves is frightening.

It's the plutocracy continuing the eugenics movement under the new name of transhumanism. What better means to covertly target a population than to give them something for free and then poison it, then claim the poison was due to human error?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
We don't expect our friends, family or fellow forum members to be right all the time. And they know that we'll be wrong sometimes too.

Some people are more credulous than others, and some will believe everything they read. I gave a friend some incorrect medical info soon after I graduated, having become over-confident. When I told her I had got it wrong, she said that she believed/trusted everything I said. I told her that she mustn't. That's why we have to be so careful to be nuanced about what we say.
Fwiw, I moved recently and am now living among an older group, 70+, of people. I expected them to be doctor worshipers and was pleasantly surprised. I haven't figured out yet why they think so little of doctors because I was shocked by this. But wisdom and common sense come to mind. Most mention money / greed but they also didn't grow up running to the doctor for everything.

In a word - experience.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
So what is your view on Vitamin /herbal supplements? I take quite a few which are way above the RDA. I can say that when i stop taking certain supplements (of the like recommended by Dr Myhill) i become more severely ill- given your logic you'd no doubt be against that but it's a very distressing place to be-too distressing.

It's an interesting question. Unfortunately, Myhill's hypothesis is naive and erroneous, CFS isn't caused by bad living, starch and a lack of fish oil in susceptible people. These problems are probably why 75% Myhill's subjects quit the 2012 trial. In a way, it really isn't much different from the hypothesis that CFS is caused by an autoimmune reaction to unspecified pathogens in susceptible people.

My view on supplements is that they are wonderful, but they aren't going to cure your CFS and if you take more than your body needs it is a bad thing. Presently, the only way most people know how to take them is to read instructions on a bottle and guess, much like taking an aspirin. The problem with this is that it doesn't account for a person's individual differences and even in the different demands their body is going through day to day.

So with current technology it is very expensive and difficult to dose supplement. That is going to need new technology to change.

I get the point about in an ideal world we would have properly controlled trials for everything but trials don't fall out of sky- they require money and an impetus to conduct them which is often not forthcoming. The point is that it's easy to comment objectively on such things when your're not ill with a disease yourself but as patients we live in the here and now. When are we going to get treatments for this disease (let alone a cure/s) in 10 years? 20? 30? 100? That'll be too late for me. The fact that people do discuss things that have helped them is precisely because of the absence of such trials and treatments which i'm sure we'd all welcome. This is the personal and social context we inhabit which is a very distressing one.

And that we live in a system where most of the drug research is being done for patent extensions the fact that so little progress is being made tells you about how inadequate the current system is.
 

shahida

Senior Member
Messages
120
I am not quite sure what point you are wanting to make Shahida. As MeSci says RDA is just an indication of a reasonable minimum to ensure you get enough, at least as I understand it. If you know the toxicities of some of these B vitamins then you would do well not to take too much I guess. All I know is that masses of people take supplements and nobody seems to be coming in to hospital with toxicity much. I probably get ten times the RDA of some vitamins because I eat huge quantities of fruit.
I am well aware that the RDA is not the max’ safe limit- but, as I wrote many conventional doctors advocate AGAINST taking these- I’ve had doctors/GP’S tell me to stop taking them, although I refuse. ( There’s another doc’ on PR who has written on this and has argued against anything above the RDA). As for ‘if you know the toxicity stop taking them’, my brain is too bad to synthesise all the info’ and these vits’ are very commercially available- . I’m saying that what is ‘safe’ is therefore actually a very contested area, often between conventional doctors and patients. And long term effects may not be as obvious as ‘turning up to hospital with toxicity’. Maybe in the same way that who knows what effect long term exposure to low level radiation will bring via mobile phone masts and low level radiation in our increasing technological world- can we confidently say there's absolutely no health issue here? Well there's no evidence for it but has the evidence been investigated sufficiently~? No. Who knows what damaging health effects we're storing up. Jonathon, you repeatedly call for proper scientific trials before PWME try things but I repeat, the same hasn’t been done for vits’. I keep taking them but i don't really know why half the time. I agree with JanalpenoLuv to the extent that nutritional science is very much in its infancy and just won't get the sort of money given to Alzheimers etc.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
By elimination challenge. A Herx flares symptoms far above the baseline range. The main problem is that many of the supplements (alpha lipoic acid, resversatrol, knotweed, milk thistle, quercitin, green tea and tobacco) being pushed by the gurus as helpful are actually harmful because they are anti-apoptosis and suppress the reactions; so people think they feel better because there are fewer free radicals but it really is just that they suppressed their immune system. In a way,the experiment drug rituximab has a similar effect because reducing B cells is another way to mask apoptosis derived pain in a chronic infection.

Could you give more detail on how you differentiate between Herx and ME symptoms? I'm not clear on the meaning of 'By elimination challenge'.

There has been a number of threads on the question of identifying Herx reactions, which you can find from a site search.

For people whose PEM is severe, but who are quite well when not suffering PEM, I can't see how they will be able to tell the difference between PEM and Herx.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
I am well aware that the RDA is not the max’ safe limit- but, as I wrote many conventional doctors advocate AGAINST taking these- I’ve had doctors/GP’S tell me to stop taking them, although I refuse. ( There’s another doc’ on PR who has written on this and has argued against anything above the RDA). As for ‘if you know the toxicity stop taking them’...

It's an interesting research question. Maybe a reason for Myhill's high drop out rate was that the damaged cells of some patients couldn't handle excess nutrients and they manifested it as additional pain and inflammation.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
It's an interesting question. Unfortunately, Myhill's hypothesis is naive and erroneous, CFS isn't caused by bad living, starch and a lack of fish oil in susceptible people. These problems are probably why 75% Myhill's subjects quit the 2012 trial. In a way, it really isn't much different from the hypothesis that CFS is caused by an autoimmune reaction to unspecified pathogens in susceptible people.

Autoimmune reactions are not to pathogens.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
Could you give more detail on how you differentiate between Herx and ME symptoms? I'm not clear on the meaning of 'By elimination challenge'.

There has been a number of threads on the question of identifying Herx reactions, which you can find from a site search.

For people whose PEM is severe, but who are quite well when not suffering PEM, I can't see how they will be able to tell the difference between PEM and Herx.

It's basically a crossover when you try something stop then reintroduce it.

https://en.wikipedia.org/wiki/Crossover_study
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
It's basically a crossover when you try something stop then reintroduce it.

https://en.wikipedia.org/wiki/Crossover_study

I do know about crossover studies, but I'm not convinced in this instance. It doesn't allow for the fact that things take time to take effect, and to stop having effects, or the confounding effect of overactivity which causes PEM after 1, 2, 3 or even more days.

Jarisch-Herxheimer is due to the release of endotoxins - but overexertion appears to cause this too in ME. I look at this issue in this blogpost.

That's one of the major problems we have - not knowing what has caused whatever changes we experience. We tend to be taking multiple supplements, etc. (and sometimes this is necessary to achieve a desired result).
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
It's an interesting question. Unfortunately, Myhill's hypothesis is naive and erroneous, CFS isn't caused by bad living, starch and a lack of fish oil in susceptible people. These problems are probably why 75% Myhill's subjects quit the 2012 trial. In a way, it really isn't much different from the hypothesis that CFS is caused by an autoimmune reaction to unspecified pathogens in susceptible people.

I don't remember Dr Myhill saying bad living, starch and a lack of fish oil in susceptible people was the cause of cfs. Do you have a source for that ?

I've seen her recommend that pwcs go on the paleo diet / elimination diet due to leaky gut. This is so that their bodies have less to deal with and get as many nutrients as possible. And in many cases this reduces the number of symptoms. She recommends other life style changes and nutrients too.

From what I remember she also recognizes that some patients won't respond to her first line of recommendations. I'm not sure what happens in those situations but I have pem today so I'm not all here.

A lot of this was on her website tho. Tc .. x

Ps. Personally imho many of those showing strong positive reactions to the paleo or elimination diet were probably gluten intolerant. It's well known that some, all ?, celiacs can't heal properly when ingesting gluten.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
"If your friends jumped off a bridge, would you ?" ☺

I couldn't tell you how many times I heard this as a child or said this to children. Imho, this applies here too.

I just realized, doh I am slow just now, you just stated a different version of my rule 12 from my 28 rules blog:

12. What does one lemming say to the other? "Everyone is moving this direction, it must be a good idea." Beware your fellow lemmings - just because something is popular doesn't make it right or a good idea. Make up your own mind after at least some investigating and if you still agree then follow the others, just be cautious of cliffs and oceans.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
That's one of the major problems we have - not knowing what has caused whatever changes we experience. We tend to be taking multiple supplements, etc. (and sometimes this is necessary to achieve a desired result).

I don't have that problem so don't say we.