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

[JAM]

Are you aware of the vagus nerve infection hypothesis, as discussed here? If you kill that one you could be in serious trouble - if not dead.

Will you be more specific about what you are asking and of whom? I can't figure out exactly what is being killed and by whom. Are we playing clue?

 

[MeSci]

Will you be more specific about what you are asking and of whom? I can't figure out exactly what is being killed and by whom. Are we playing clue?

If you look at my message to which @JalapenoLuv was replying you can see that I was replying to him, and to what it related.

 

[JAM]

If you look at my message to which @JalapenoLuv was replying you can see that I was replying to him, and to what it related.

Strange, I got an alert about that post via email, but don't see it here. Either way, I understand now, and look forward to his response.

 

[MeSci]

Strange, I got an alert about that post via email, but don't see it here. Either way, I understand now, and look forward to his response.

This is the message. He has replied!

 

[Snowdrop]

Much better to eat healthy food! I also think there are factors in real food that we can't replace with pills. (post #115)

This is what I try to do and would seem to be common sense.
The problem being on thinking about it further than the obvious (fruits and veggies are good for you) is that increasingly our food is being tampered with and grown in soil (even when organic) that has been depleted over long stretches of time of a variety of nutrients.
When was the last time any of us had our food personally analysed as to it's actual nutritional content versus the theoretical nutrition per serving that gets promoted to us via rather old data.

This is not to promote vitamin supplements which have their own set of problems. It's just that sometimes there just isn't a magic bullet that is the one right or best solution. It's further complicated by the fact that even with some healthy foods people get health benefits from avoiding certain specific foods however healthful.

It's a complicated business this. In finding solutions for each of our various health issues we are all peering into a glass darkly.

 

[JAM]

Much better to eat healthy food! I also think there are factors in real food that we can't replace with pills. (post #115)

This is what I try to do and would seem to be common sense.
The problem being on thinking about it further than the obvious (fruits and veggies are good for you) is that increasingly our food is being tampered with and grown in soil (even when organic) that has been depleted over long stretches of time of a variety of nutrients.
When was the last time any of us had our food personally analysed as to it's actual nutritional content versus the theoretical nutrition per serving that gets promoted to us via rather old data.

This is not to promote vitamin supplements which have their own set of problems. It's just that sometimes there just isn't a magic bullet that is the one right or best solution. It's further complicated by the fact that even with some healthy foods people get health benefits from avoiding certain specific foods however healthful.

It's a complicated business this. In finding solutions for each of our various health issues we are all peering into a glass darkly.

All good reasons to know your farmer and/or rancher, and grow your own if possible. It is crazy how much time I spend researching my food!

 

[Snowdrop]

I'm afraid I'm not done with my ranting opinion on why I have problems with CBT.

So I have spent some time and effort to compose at least the parts that come to mind at present.

Here they are: (appologies, it's somewhat long)

I expect that most CBT practitioners are people with an genuine desire to help. And we all could use a little help now and then. Even if CBT were 100% effective (for my purpose here I mean effective at helping people with ME cope with their illness) I still see a few problems with promoting it.

• It seems that somehow CBT needs to defend itself as to it’s efficacy so a lot of research money gets sidetracked for this purpose. Why it is so easy for this research to acquire funds and so hard for biomedical research to find money is something to ponder.

• Again, presuming CBT is effective; since we are all now coping, what’s the rush. Where is the urgency to solve the problem of causation in order to cure or treat. We are coping after all.

Think about that.

Then think about it some more.


Bullet point two leads me to think about how well meaning caring people are being co opted and used as tools sent in for the quick fix patch job that will hopefully keep a population of ill people with little energy and often few resources to shut the F**K up about the lack of effort being made to find proper treatments and a cure for ME.

The co-opting group is medical management as has been well explained in other posts.


Other problems I feel exist with the application of CBT are:


The monetisation of helping relationships. Or coming soon to your town; rent a grannie/grampa/auntie/uncle. CBT is a short course of treatment. It involves communicating between people (although as I have said in another post CBT is more like being talked at not to). Regardless of how the communication is perceived I don’t see the monetisation of relationships as a positive social development.


Relationships are truly fundamental to human existence. Advice and assistance in handling life’s difficulties has been given freely over millennia between people who have more at stake in the relationship than learning your name and limiting interaction to 6 or whatever one hour sessions and moving on. This is not a small point in my opinion.


More real help, again in my opinion, would come from volunteering to visit for 15 minutes to check on someone or bringing a home cooked meal now and then to someone near you who you know needs it. Anyone can do this, no training necessary. And it continues on past the quick fix psuedo-relationship arbitrary 6 weeks or whatever. People would have the opportunity to find their humanity back rather than outsourcing it corporate style to a business. And those who are the sickest would be served. There are many practical concerns that are more pressing then how someone is having negative thoughts about their illness.


I may have more to add later. It’s taken me a while to organise this much.


Ultimately, I don’t believe CBT is as effective as the invested parties claim. I like to think the initial claim of a cure has been utterly discredited. It’s new incarnation as the most effective treatment however still needs a few more nails in the coffin. I have reasons for this opinion but am not going to add more now.

 

[JAM]

The monetisation of helping relationships. Or coming soon to your town; rent a grannie/grampa/auntie/uncle. CBT is a short course of treatment. It involves communicating between people (although as I have said in another post CBT is more like being talked at not to). Regardless of how the communication is perceived I don’t see the monetisation of relationships as a positive social development.

That is not at all how CBT worked in my case. We didn't discuss things, as much as I learned how to deal with stimuli. It wasn't at all a relationship, even to the extent I have had with a counseling therapist. I agree that the monetization of helping relationships isn't a good thing, with a few very specific exceptions, but that isn't at all what CBT is when done by a licensed and certified practitioner, at least in the US and certified by a program such as this: http://nau.edu/SBS/IHD/Programs/Positive-Behavior-Support/

Ultimately, I don’t believe CBT is as effective as the invested parties claim. I like to think the initial claim of a cure has been utterly discredited. It’s new incarnation as the most effective treatment however still needs a few more nails in the coffin. I have reasons for this opinion but am not going to add more now.

I don't consider myself as an invested party, at least not in the sense that I make any money off the treatment, but I am invested in letting people know how much it helped me, and could possible help others. It isn't anything near a cure, but it has helped me deal with living in pain a LOT.

As for your first points, I agree to a point, but don't see why we can't use CBT in the manner which it works, AND be upset that it is promoted and used as a cover for refusing proper treatment and diverting funds.

 

[MeSci]

Why is CBT being discussed here?

 

[Snowdrop]

Hello @JAM

I was not referring to you with regards to vested interests but to the medical managerial bureaucracy who make it their job to push CBT and take much needed funding away from proper research. They certainly have reason to fear researchers finding a biomarker as that would result in actually correctly identifying the ME patient group thereby making their flawed data ever more difficult to manipulate.

Getting help for dealing with pain is always a good thing. I would still prefer that CBT not be considered a specific treatment for ME.
If any one at all wants to get CBT because they think it might help them I have no right at all to an opinion (in my opinion) it's up to them. But that it should be seen as something that always should be given regardless of patients wishes because it is seen as the most or even only effective tool is to me utterly irresponsible. And it stops people in a position to do so from looking further for anything better since they believe they've already found it.

I'd like to know, for my understanding, what drew you to use CBT. Was it with the idea of addressing your pain specifically or just generally coping with ME but you found that it helped specifically with pain issues? And how did it address the pain, do you feel pain less or (I'm unclear here) ? Over the years of experiencing pain I have simply gravitated to things that help cope sometimes without being conscious of it at first. For example, when unable to do other things reading, playing games and watching emotional easy tv programming. they act to distract me. I also meditate sometimes (although that takes a level of functioning I don't always have). I use ice, tensor bandage, pain medication (not continuously but as a 'break' from pain or to allow me to more easily sleep). These are ways I cope with pain. I don't see any of these things as requiring professional help to either think of or use.

 

[A.B.]

There are many practical concerns that are more pressing then how someone is having negative thoughts about their illness.

I can't speak for everyone, but I think all the important problems we face are concrete problems that could be solved via concrete actions. "Mental health" is the art of appearing to do something while doing absolutely nothing.

 

[JAM]

Hello @JAM

I was not referring to you with regards to vested interests but to the medical managerial bureaucracy who make it their job to push CBT and take much needed funding away from proper research. They certainly have reason to fear researchers finding a biomarker as that would result in actually correctly identifying the ME patient group thereby making their flawed data ever more difficult to manipulate.

Getting help for dealing with pain is always a good thing. I would still prefer that CBT not be considered a specific treatment for ME.
If any one at all wants to get CBT because they think it might help them I have no right at all to an opinion (in my opinion) it's up to them. But that it should be seen as something that always should be given regardless of patients wishes because it is seen as the most or even only effective tool is to me utterly irresponsible. And it stops people in a position to do so from looking further for anything better since they believe they've already found it.

I'd like to know, for my understanding, what drew you to use CBT. Was it with the idea of addressing your pain specifically or just generally coping with ME but you found that it helped specifically with pain issues? And how did it address the pain, do you feel pain less or (I'm unclear here) ? Over the years of experiencing pain I have simply gravitated to things that help cope sometimes without being conscious of it at first. For example, when unable to do other things reading, playing games and watching emotional easy tv programming. they act to distract me. I also meditate sometimes (although that takes a level of functioning I don't always have). I use ice, tensor bandage, pain medication (not continuously but as a 'break' from pain or to allow me to more easily sleep). These are ways I cope with pain. I don't see any of these things as requiring professional help to either think of or use.

I started the treatment to deal with the PTSD of living with chronic pain from birth and all that goes with it. I had never heard the idea of CBT as a cure for ME until I joined the forums here. I found that it helped in dealing with the panic and stress of pain. It helped lessen the intensity and duration of the stress/ pain cycle. It certainly didn't alleviate or cure anything, and it angers me that anyone would be told that it would. In my experience CBT is a tool similar to what you suggest you found on your own, and has been very helpful for me. I think it should be offered to everyone, BUT only in that capacity, as one of those tools, and along with medical treatment.

 

[BurnA]

In fact it was malarone. We now avoid everything except doxycycline.

I came across this - any relevance ?
http://intimm.oxfordjournals.org/content/13/7/921.full
I would not understand the scientific details so a yes / no is ok !

Thanks

 

[bertiedog]

A hazard of using knotweed-derived resveratrol is that many such supplements also contain emodin, which can harm the gut and cause vomiting and diarrhoea. It may not be mentioned on the label, but IMO it should be. I fell foul of this undeclared ingredient.

I ran into real trouble when taking Japanese Knotweed because it is a potent vasodilator and as I suffer with very severe migraine and also POTS its the last thing I need. Every time I have taken it I get terrible migraines and eventually my electrolytes were thrown out too so I needed a low dose of Fludrocortisone for a while to get over it (I have adrenal insufficiency).

Unfortunately its part of Stephen Buhner's protocol for borreliosis but I am going to get rid of the remaining 550 capsules I have to ensure I am never tempted again to take it! (It was given to me by a qualified herbalist who obviously took no notice of my health issues. It was only after my health had crashed that I looked to find out what could have caused it and came upon the properties of JK.) Needless to say I wasn't impressed and no longer see that herbalist.

Pam

 

[Jonathan Edwards]

I came across this - any relevance ?
http://intimm.oxfordjournals.org/content/13/7/921.full
I would not understand the scientific details so a yes / no is ok !

Thanks

Probably not, although it is intriguing how many things doxycycline does. Maybe it should be added to rituximab, but I suspect not!!

 

[frozenborderline]

I try to remember that most things discussed here are hypothetical or experimental. They might be right, wrong or kind of right, but we do not know for sure yet. Some caution is always warranted.

There is also what Taleb calls the antilibrary, in The Black Swan. Anecdotal evidence falls foul of this a lot. We hear the successes. Who is tabulating and publishing the failures? Or are they lost to history? The antilibrary (iirc) is the things that should have been recorded, that might have put things in perspective, but nobody ever did this.

This is in part why science requires things like dbRCTs to be sure of treatments. Even then, there is a suspicion that such "gold" standard studies are wrong about 10% of the time. Bias can creep in anywhere, for so many different reasons. Even pure chance has an impact, especially in small sample sizes.

what do you think the best Taleb book is? I have considered his writing on precautionary principle relevant to environmental health concerned but want to read him more broadly

 

[alex3619]

what do you think the best Taleb book is? I have considered his writing on precautionary principle relevant to environmental health concerned but want to read him more broadly

I have only a limited reading history of Taleb, so I cannot advise you. However I think his books are good.

There are at least two things people have trouble thinking about intuitively - exponential growth, and discontinuities. Discontinuities cannot be predicted from trends. They require specialised knowledge. Many of these relate to the issue of unknown unknowns ... things we do not know, but we know so little about them we don't even know there is anything we might not know. All of us are vulnerable to this.