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

worldbackwards

Senior Member
Messages
2,051
I think that the promotion of the benefits of positive thinking for patient with ME/CFS can be acceptable as long as it is equated with any other chronic illness - not unique to ME/CFS.

Positive thinking, relaxation techniques and even CBT could possibly improve patients suffering from any long term serious illness.

The problem arises when this is promoted exclusively for ME/CFS and excluding other biomedical intervention.

the connotation being that this is an illness of the mind alone and can only be treated that way.

I basically agree, but with ME it becomes the thin end of the wedge. It seems to be frequently brought up under the banner of 'well, they do this for cancer, y'know', whilst not mentioning that they do actually use other treatments as well. The bottom line is it's being used as a front line treatment for ME, which has very clear implications in itself.
 

shahida

Senior Member
Messages
120
Interestingly, JalapenoLuv, there is a big distinction across the Atlantic here. UK doctors are not the slightest bit worried about getting sued unless they are in something like obstetrics or interventional radiology. I am frightened of using drugs off label simply because I have seen people die from the use of even licensed drugs in an approved setting.

Lots of people are making very interesting points here. My simple point remains that with the welcome advance of empowerment through the net comes a certain degree of responsibility. And to put it simply I think patients maybe should be a bit more frightened too. My wife became insane and nearly died after taking a very ordinary malaria tablet. And even if you can handle it for yourself you don't want to be the one who made the recommendation when someone else comes to grief. What I find most difficult is when people swallow bogus science and repeat it as if it were cast iron fact - just like the CBT therapists in a way. I think Jesus said something about motes in your eye but I was never that good on the bible.
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. 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.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
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. 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.

I see no harm in people taking things that are known to be safe. A lot of vitamins can be taken in almost any amount, although vitamin A at high dose is a lethal poison. I am a bit worried about some of the things called 'supplements' which do not seem to be much to do with essential intakes like vitamins and basic minerals. I would also worry about 'herbs' especially from the far East since these can contain heavy metals and carcinogens like Sudan red. But as long as people are not spending precious savings I see no harm in general.

I fully understand the desire to find something that seems to help. My concern is an unwitting 'recommendation' purely through expression of enthusiasm when the person enthusing may not know enough about potential hazards. I also think that bogus scientific explanations for why something should work often get picked up and repeated, and that may also encourage others to try things that would be better left alone.

I am actually a great believer in the power of very simple things. If I hit my thumb with a sledge hammer (I tend to be a bit accident prone) I do not go to get paracetamol which will do nothing much in half an hour. I get a block of ice. The effect is instantaneous and complete. Similarly, if I am suffering from a virus a sip of lemon tea will do more good than anything. To my mind these show the power of stimulating the brain directly through its natural channels - the sense receptors for things it is programmed to welcome in the circumstances. Even the smell of the lemon tea if it is too hot is almost enough. And I see no reason to ignore such simple signals because all the awful sensations we get with hammer blows and viruses, like pain and nausea, are being generated by our brains using just the same sorts of signals. I can see a lot of sense in Dr Myhill's recipe for keeping well, for instance. It is just that I am not sure I think her background explanations make a lot of sense. I think sleep routines and good fresh food work straight on the hypothalamus and I rather suspect that is the sorting office for all the unpleasant brain messages that make up MEsymptoms.
 
Messages
14
I see no harm in people taking things that are known to be safe. A lot of vitamins can be taken in almost any amount, although vitamin A at high dose is a lethal poison. I am a bit worried about some of the things called 'supplements' which do not seem to be much to do with essential intakes like vitamins and basic minerals. I would also worry about 'herbs' especially from the far East since these can contain heavy metals and carcinogens like Sudan red. But as long as people are not spending precious savings I see no harm in general.

I find this very interesting as to what you might class as 'safe' and 'unsafe'. I would just like to comment that many pharmaceutical drugs such as antidepressants, statins and vaccines contain heavy metals (as in the flu jab). Yet these are strongly recommended by most GP's.
 

Valentijn

Senior Member
Messages
15,786
I basically agree, but with ME it becomes the thin end of the wedge. It seems to be frequently brought up under the banner of 'well, they do this for cancer, y'know', whilst not mentioning that they do actually use other treatments as well. The bottom line is it's being used as a front line treatment for ME, which has very clear implications in itself.
Traditionally CBT has also been an exclusionary treatment for ME/CFS patients. In the late 1990's, the big psychosomatic researchers were publishing a guideline saying that the patient must agree not to seek other treatments or even see other medical specialists, unless approved by the CBT psychologist.

Unfortunately this is still having a big impact today, though the CBT proponents are less explicit - either due to changing norms (they also don't feel comfortable saying we shouldn't get benefits now), or due to such publications being easily accessible to patients and other non-medical members of the public. But "suggestions" still remain, implying that alternative treatments to CBT will somehow harm us or interfere with the CBT. In the Netherlands at least, my psychologist scolded me and exclaimed that doctors cannot help ME patients, when I tried to get my OI dealt with. And a woman died a couple years ago from breast cancer because her GP would not screen her for it while she was seeing a real ME specialist, despite obvious signs and a family history of breast cancer.

The CBT which is inflicted upon us should not be called CBT. It's a perverse and abusive "treatment" which bears no resemblance to real CBT. But that's just another way for psychobabblers to play around with terminology to hide true meanings, much in the same way that they come up for a new euphemism for "psychosomatic" every couple years, when patients start to catch on to the prior terms.
 
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worldbackwards

Senior Member
Messages
2,051
The CBT which is inflicted upon us should not be called CBT. It's a perverse and abusive "treatment" which bears no resemblance to real CBT. But that's just another way for psychobabblers to play around with terminology to hide true meanings, much in the same way that they come up for a new euphemism for "psychosomatic" every couple years, when patients start to catch on to the prior terms.

This is something that's always bothered me. In the UK NICE guidelines, the description of CBT given bares little resemblance to the treatment researched by Wessely, White, et al; it's generally lots of stuff that can mean all things to all people, it could be used in a supportive model, but also interpreted by the psychs to let them do what they want (especially the note on 'body watching'). It seems that definitions can be unilaterally revamped to suit any given audience on any given day, with the basic proviso that, whatever it says on the box, it's always got the same old bullshit inside it.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I find this very interesting as to what you might class as 'safe' and 'unsafe'. I would just like to comment that many pharmaceutical drugs such as antidepressants, statins and vaccines contain heavy metals (as in the flu jab). Yet these are strongly recommended by most GP's.

I am not sure you need to worry about the heavy metals in pharmaceuticals - it is the pharmaceuticals you need to worry about! And yes, this has a lot to do with what I am talking about. Much of the enthusiasm on the list is for drugs prescribed by doctors which I have significant safety concerns about - such as valganciclovir. Whether or not something is prescribed is not the issue, it is whether or not it is safe. Safety is relative, of course, but one has to come to some sensible decision about balance of safety and likely benefit.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
This is something that's always bothered me. In the UK NICE guidelines, the description of CBT given bares little resemblance to the treatment researched by Wessely, White, et al; it's generally lots of stuff that can mean all things to all people, it could be used in a supportive model, but also interpreted by the psychs to let them do what they want (especially the note on 'body watching'). It seems that definitions can be unilaterally revamped to suit any given audience on any given day, with the basic proviso that, whatever it says on the box, it's always got the same old bullshit inside it.

I think I might have to report you and Valentijn for being off topic here, worldbackwards - this is supposed to be dodgy treatments recommended from patient to patient!!! But I am interested that this is yet another gaping hole in the PACE study. In drug development, to get a licence you pretty much have to show a dose response - that is to say a sensible relationship between quantity of treatment and effect. One wonders whether they should have compared CBT from a therapist with thick studious-looking glasses frames with one with seriously thick studious-looking glasses frames or one with a classy cashmere jumper with ... They might even have thrown in a group that spoke fluent English in my experience.
 

Valentijn

Senior Member
Messages
15,786
One wonders whether they should have compared CBT from a therapist with thick studious-looking glasses frames with one with seriously thick studious-looking glasses frames or one with a classy cashmere jumper with ... They might even have thrown in a group that spoke fluent English in my experience.
They actually end up making these sort of suggestions when CBT and/or GET fails to have any impact on the vast majority of patients in a study. "Obviously we need to try more CBT for the pesky non-responders! Or we need to develop and apply CBT in a minutely different manner next time!" There's never any consideration that the psychosomatic-CBT might be the problem itself.
 

user9876

Senior Member
Messages
4,556
I think I might have to report you and Valentijn for being off topic here, worldbackwards - this is supposed to be dodgy treatments recommended from patient to patient!!! But I am interested that this is yet another gaping hole in the PACE study. In drug development, to get a licence you pretty much have to show a dose response - that is to say a sensible relationship between quantity of treatment and effect. One wonders whether they should have compared CBT from a therapist with thick studious-looking glasses frames with one with seriously thick studious-looking glasses frames or one with a classy cashmere jumper with ... They might even have thrown in a group that spoke fluent English in my experience.

With things like CBT there is an obvious issue around how such a service can be rolled out consistently. I think there is some research about how therapists make a difference. But drugs should be more consistent both in terms of the manufacturing process and doses. The thing I've been wondering about with respect to safety is what effect do the doctors giving out the drugs have in terms of their experience in recognizing dangers early (basically does this change the risk). I was thinking this is relevant to the patients recommending to patients if one patient is getting a drug from someone experienced in its use but another say persuades a GP to give them a drug and the GP hasn't used it before and perhaps isn't aware of what to look out for?
 

Sidereal

Senior Member
Messages
4,856
I think one of the challenges on a forum like this is that if one were to try to correct every post that contains inaccurate information or hypotheses presented as fact one would end up having to spend a lot of their time doing so. I am also not sure who would get to be the final arbiter of accuracy of medical information. Mods? People with the most credentials? People with the highest post count? Those who shout the loudest? Consensus opinion? Sometimes textbook "facts" turn out to be wrong. Certainly most stuff in medical journals is wrong.

I tend to just ignore the stuff on forums that annoys me like various non-existent alternative medicine concepts discussed as fact like adrenal fatigue. There is also a lot of mythology and sacred cows in the M.E. community. In the 1980s it was chronic Epstein Barr in America and enteroviruses in Britain, then we had HHV-6, then intracellular bacterial infections like mycoplasma and chlamydia pneumoniae in the 1990s. Now of course it's chronic Lyme disease and coinfections. Although to my mind there is no satisfactory RCT evidence that antivirals or antibiotics work for this disease, I have to take into account the fact that some patients on the internet will swear on a stack of bibles that these therapies have helped them greatly. I don't think we can just dismiss these reports as placebo or spontaneous remission. It is of course troubling to watch new patients coming in contact with these fads.

I try to keep a relatively open mind about hypotheses that have some face validity while at the same time I am extremely cautious about trying purported treatments on myself. I do think however that if people want to experiment on themselves with potentially dangerous treatments they should be allowed to do so. The disability produced by this illness can be extreme so I think people should be able to take extreme risks if they feel it is appropriate in their situation. I am troubled by the intrusive nature of the state and psychiatric services when it comes to this illness.

I also try to keep in mind that some ideas that are initially ridiculed by mainstream medicine turn out to be true. In the late 1980s I'm sure plenty of professors of gastroenterology were dissuading patients from pursuing crazy unproven antibiotic therapies for ulcers and were recommending sticking with "evidence-based" antacids and psychobabble. I still come across doctors who believe this. My former GP did in 2012. In hindsight they were wrong but I'm sure many at the time genuinely believed they were protecting patients from rancid quackery of opportunistic doctors. Of course most novel ideas in medicine turn out to be pure trash but sometimes it's hard to tell which is which especially in an under-researched area like M.E. where we have plenty of conjecture and one-off unreplicated studies and very little good solid reproducible science.

One issue I am uncomfortable with is what I perceive to be excessively positive attitude toward so-called ME/CFS specialists. When I became housebound with this illness (after many years of struggling along with "mild" symptoms) I decided I had to "do something" since the thought of my life just stopping dead in its tracks was intolerable. I figured I should see one of these top ME/CFS docs/gurus and researched them. I concluded that I don't know that anyone has the kind of expertise about this illness to justify their fees and treatment approaches. Most patients in my opinion would be better off saving their money for the long haul since most of us who become disabled/bedbound/housebound with this illness in adulthood never go back to work.

That said, given the political situation, I am unwilling to publicly criticise these physicians who believe us, sometimes show us kindness (when all we get is disbelief, rejection and/or abuse from most mainstream doctors and the state) and seem to genuinely want to help us with biological therapies. I would personally not go anywhere near something like valganciclovir or long-term antibiotics (or indeed rituximab until more data are in about which subgroup(s) might benefit) but that just reflects my general cautious approach to medical treatment. I also think all conventional treatments that have been offered to me like hydroxychloroquine, prednisolone, fludrocortisone, beta blockers, antidepressants etc. are dangerous and not worth taking given their marginal benefits and severe side-effects. But with so few physicians worldwide who are publicly willing to admit that they "believe" in this illness as a biological entity and spend their careers trying to help us with symptomatic relief, experimental treatments, disability applications etc., I find it hard to criticise their treatment approaches even though I personally believe there is no evidence to justify their use at this time.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I also try to keep in mind that some ideas that are initially ridiculed by mainstream medicine turn out to be true. In the late 1980s I'm sure plenty of professors of gastroenterology were dissuading patients from pursuing crazy unproven antibiotic therapies for ulcers and were recommending sticking with "evidence-based" antacids and psychobabble. I still come across doctors who believe this. My former GP did in 2012. In hindsight they were wrong but I'm sure many at the time genuinely believed they were protecting patients from rancid quackery of opportunistic doctors.

Quite often this conflict between what patients believe and what doctors believe is due to patients being au fait with recent scientific findings, whereas, at least in the UK, mainstream medicine lags sometimes as much as 10-20 years behind.

It still seems to be commonly believed by doctors, for example, that the only kind of gluten intolerance is coeliac disease, whereas there have been several papers which, from a quickish look, appear to provide compelling evidence of other kinds, and that gluten intolerance is in fact much more common than coeliac disease.

Health professionals still seem to be (all?) promoting low-fat diets for weight loss, when it is increasingly clear that sugar is the main dietary culprit for obesity.

Exercise is still promoted for weight loss, when the evidence is very weak.

Salt is still demonised to an absurd degree, when evidence is finally emerging that, at least for some people, salt reduction is dangerous.

Etc., etc.

BTW, this appears to be a good place to provide a few links to sites where general info about supplements can be found.

The best one I have come across so far is Examine.com.

Click on the three lines on the top right and you will get a search box where you can enter names of supplements.

Two others that can be useful are:

University of Maryland Complementary and Alternative Medicine Guide

and

Linus Pauling Institute Micronutrient Center

although I would take some of the info on the latter two with a pinch of salt! :D
 
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shahida

Senior Member
Messages
120
I see no harm in people taking things that are known to be safe. A lot of vitamins can be taken in almost any amount, although vitamin A at high dose is a lethal poison. I am a bit worried about some of the things called 'supplements' which do not seem to be much to do with essential intakes like vitamins and basic minerals. I would also worry about 'herbs' especially from the far East since these can contain heavy metals and carcinogens like Sudan red. But as long as people are not spending precious savings I see no harm in general.

I fully understand the desire to find something that seems to help. My concern is an unwitting 'recommendation' purely through expression of enthusiasm when the person enthusing may not know enough about potential hazards. I also think that bogus scientific explanations for why something should work often get picked up and repeated, and that may also encourage others to try things that would be better left alone.

I am actually a great believer in the power of very simple things. If I hit my thumb with a sledge hammer (I tend to be a bit accident prone) I do not go to get paracetamol which will do nothing much in half an hour. I get a block of ice. The effect is instantaneous and complete. Similarly, if I am suffering from a virus a sip of lemon tea will do more good than anything. To my mind these show the power of stimulating the brain directly through its natural channels - the sense receptors for things it is programmed to welcome in the circumstances. Even the smell of the lemon tea if it is too hot is almost enough. And I see no reason to ignore such simple signals because all the awful sensations we get with hammer blows and viruses, like pain and nausea, are being generated by our brains using just the same sorts of signals. I can see a lot of sense in Dr Myhill's recipe for keeping well, for instance. It is just that I am not sure I think her background explanations make a lot of sense. I think sleep routines and good fresh food work straight on the hypothalamus and I rather suspect that is the sorting office for all the unpleasant brain messages that make up MEsymptoms.
But many vitamins supplements are way above the RDA which many doctors/ GP'S that i've come across adhere to as 'safe'- that's the point of a RDA. You can easily go into your local healthfood store and pick up a B vitamin complex where the levels of vitamins are extremely high. There are (non government) bodies who state:
"However, any excessive intake of such, higher than the upper tolerable limit may cause over dosage and health consequences. Vitamin B12: Excessive levels of cyanocobalamin can cause hyperthyroidism. Vitamin B3: An overdose of this vitamin can result in hyperglycemia, hyperuricemia, jaundice, calcium loss and hyperacidity. " Etc.
Many people with ME do take such mega doses of vitamins as do I. But i don't know what the long term consequences of what i'm taking are- i take them because they allow me to get up and do some things in the absence of any other alternative. . Has anyone actually studied ,in the way you advocate, the long term effects of such vitamin usage? No. I doubt this area gets the sort of money one would need to conduct such a trial. Nutritional medicine itself is in its infancy. I really think that what you cite as 'safe' is therefore very dubious in that it's the result of that which hasn't been subject to such scientific scrutiny (as it's not much of a priority, i suppose).
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
But many vitamins supplements are way above the RDA which many doctors/ GP'S that i've come across adhere to as 'safe'- that's the point of a RDA. You can easily go into your local healthfood store and pick up a B vitamin complex where the levels of vitamins are extremely high. There are (non government) bodies who state:
"However, any excessive intake of such, higher than the upper tolerable limit may cause over dosage and health consequences. Vitamin B12: Excessive levels of cyanocobalamin can cause hyperthyroidism. Vitamin B3: An overdose of this vitamin can result in hyperglycemia, hyperuricemia, jaundice, calcium loss and hyperacidity. " Etc.
Many people with ME do take such mega doses of vitamins as do I. But i don't know what the long term consequences of what i'm taking are- i take them because they allow me to get up and do some things in the absence of any other alternative. . Has anyone actually studied ,in the way you advocate, the long term effects of such vitamin usage? No. I doubt this area gets the sort of money one would need to conduct such a trial. Nutritional medicine itself is in its infancy. I really think that what you cite as 'safe' is therefore very dubious in that it's the result of that which hasn't been subject to such scientific scrutiny (as it's not much of a priority, i suppose).

RDA isn't the maximum safe limit. There's some info here.

Click on the name of the supplement and 'Health Professional', and you can find RDAs, maximums, etc.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I really think that what you cite as 'safe' is therefore very dubious in that it's the result of that which hasn't been subject to such scientific scrutiny (as it's not much of a priority, i suppose).

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.
 

Gingergrrl

Senior Member
Messages
16,171
In fact it was malarone. We now avoid everything except doxycycline.

@Jonathan Edwards I am not familiar with Malarone and am so sorry that happened to your wife. The drug I suspected was Larium (generic Mefloquine) because it can cause florid psychosis in people with no prior psychiatric history. Many military members (and others) have ended up committing suicide or acts of violence shortly after being given Larium. It is given as if it is totally benign and patients are rarely warned by doctors of the potential side effects.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
Interestingly, JalapenoLuv, there is a big distinction across the Atlantic here. UK doctors are not the slightest bit worried about getting sued unless they are in something like obstetrics or interventional radiology. I am frightened of using drugs off label simply because I have seen people die from the use of even licensed drugs in an approved setting.

JE, I think the difference lies in our different theories about the disease and estimates about its severity. I have this disease while you merely are an observer. So as a participant with a health care background I can test different theories using drugs, supplements or any other regimen and note the effect. For an autoimmune disease theory this would be largely irrelevant since the problem requires lab testing to gauge changes.

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.

Antiviral drug mechanisms are the same, they are virostatic. So with these statics all you can get is a brief improvement in symptoms followed by recurrence. The best explanation for this is that the infectious agents are intracellular. Of course all viruses are, and bartonella spp. explains the neurological presentation.

So how does one clear out a large mass of infected tissue that is hijacking the body through specific, elaborate molecular pathways? 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. That is the level of difficulty treating ME is. Interestingly, the level of disability parallels the amount of infected tissue.

Also, there probably is a window to treat the patient where if they pass beyond it will be impossible to recover because there will be too much tissue damage. So given that prognosis and the horrible amount of incapacity some experimentation is probably justified if the doctor has a good basis for the trial and the patient is aware of the risks. While not definitive, it could yield some useful data that could be tested more rigorously later.

What I find most difficult is when people swallow bogus science and repeat it as if it were cast iron fact - just like the CBT therapists in a way. I think Jesus said something about motes in your eye but I was never that good on the bible.

I agree, but it is human nature for desperate people to cling to whatever hope they have. And if they aren't trained in the scientific method they will treat it as a religion rather than realize that to progress it is necessary to let go of disproven hypotheses.

Sashida, Let me chew on this Myhill info which is new to me before I muddy up the water with my views in vitamins and supplements.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There is an issue here that Jonathon touched on I would like to expand on. Sometimes various treatments work, and work well. Yet that does not mean we understand why they work. Many of the explanations I have heard over the years, and even from doctors, are patent nonsense. Others are hypothetical and lack evidence. Yet the treatment works. The sad fact is we often do not know why they work, or what makes them stop working, or which patients they work on best. Its good we keep looking for answers. Its bad if we prematurely settle on an answer because it confirms our idea.

Just because a treatment can help, and there are explanations, does not make the explanations right. For example, antibiotics are often molecules that have many secondary effects on the body. The same is true of many other drugs. Its primary effect may not be why it is working.

The same situation arises in reasoning (argument). Someone can argue for a position that is right, but the rightness (truth) of the conclusion does not make the reasoning right. That is a trap we all fall into from time to time, its human nature. Heck, even I have done it. ;):eek::jaw-drop::nervous:
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
So how does one clear out a large mass of infected tissue that is hijacking the body through specific, elaborate molecular pathways? 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. That is the level of difficulty treating ME is. Interestingly, the level of disability parallels the amount of infected tissue.

Also, there probably is a window to treat the patient where if they pass beyond it will be impossible to recover because there will be too much tissue damage. So given that prognosis and the horrible amount of incapacity some experimentation is probably justified if the doctor has a good basis for the trial and the patient is aware of the risks. While not definitive, it could yield some useful data that could be tested more rigorously later.

I have commented before on apoptosis inducing treatments. It depends on what is wrong, and scale of infection. For example, if the enteroviral load in the gut is as high as some claim, then inducing apoptosis might just dissolve the gut ... it might just die. Ditto for any highly infected tissue, which may include heart and spinal nerves. So we need to know what we are talking about before trying something along these lines.

Now if the brain is harboring lots of low activity viruses, then apoptosis might just finish the zombie process that ME started.

It is probably correct though that many new intracellular infections could be treated by increased apoptosis. I would like to see lots of good research before going this road however.