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

[MeSci]

My wife became insane and nearly died after taking a very ordinary malaria tablet.

I hope she recovered. I think I've heard of such side-effects.

 

[JAM]

You are in good company there - know about David Healy?

I had not heard of him, but had heard of some of his work. I will check him out more, but so far he sounds good. Thanks for the introduction.

 

[Sasha]

I find it somewhat disappointing that for example, the value of B12 shots has not been studied as far as I know.

The Open Medicine Institute successfully crowdfunded a study on this at the beginning of the year - haven't seen an update.

 

[alex3619]

That is what I call common sense psychological support. Doing whatever you think you can to make life bearable. I guess it shows sympathy. And I have always thought one could be 'optimistic' without any need for a 'spin'. It helped a lot when my sister in law, who had once had to do the caring I was having to do, just said 'hang in there, you will get through', which could have meant anything, but picked me up off the floor. But I agree that the canned stuff is lethal.

With optimism being considered as compassionate support then I am in agreement with this. Keeping away from spin is critical in my view. More and more patients see through spin from doctors. We are becoming better educated in medical matters. So when doctors use spin and more spin what they really do is destroy trust.

Its always acceptable, in my view, for a doctor to say "I do not know" or "I think this might be the case but we cannot be sure".

I think the way to think about many ME treatments is like diets. There are fads. I have seen poor treatments come and go. They become fads. They attract a cult following. I have debunked one (privately, don't ask) and been involved in criticizing a few more in private research forums. I have also been on the receiving end of medical authorities shutting down treatments that were working. My own 1999 hypothesis was partially disproved (but not totally, another story).

Yet its also important to realize that a lot of progress arises from patient involvement. According to one expert on H. pylori, who I mentioned in a blog, what got antibiotic treatment accepted rapidly was patient insistence. We have a role to play. However with H. pylori the science became more solid over time, and it was medical inertia and interference from pharma who stood to lose billions that delayed uptake of the new treatment.

How many here use guaifenesin? How about high dose antibiotics for long periods even in the absence of Lyme or other pathogens? These have been tried, and are still used. Yet the science is lacking. Its one thing for patients to try these things, we are often desperate and the only way to find if most things work is to suck it and see, the Lemon Rule, but we also cannot say we are sure they are effective treatments for any disease entity until we have the science.

I was also involved in the early debates on things like ONOO and red blood cell deformability. There are flaws in such research. There is uncertainty. It doesn't mean they are wrong, it means we haven't done enough science. So such treatments are experimental.

Yet sometimes progress comes because people experiment. Gosh, I have done it myself, to myself. Its a matter of experimenting with open eyes, choosing safer treatments and protocols, learning the side effects and risks, and not mis-stating any results. Its about honesty, not faddish preaching. The danger with faddish slavish praise for a treatment is that sick patients who are not aware of risks may do things that are dangerous.

One of the best pieces of advice on using more experimental treatments is "Start low and go slow". I have seen this many times, indeed I was promoting it from about 1999, though not stated so succinctly and eloquently.

 

[alex3619]

The Open Medicine Institute successfully crowdfunded a study on this at the beginning of the year - haven't seen an update.

Most studies will take from one to five years to complete. If good results are pending they may also keep a lid on it until after publication.

 

[alex3619]

On optimism, if optimistic support is considered to be positive thinking, rather than cheerful or hopeful or compassionate support, I think its not only unjustified but dangerous. Its like crying wolf. Over time people wake up and then trust is loss, and this can lead to a worse situation. People need compassion, knowing someone cares. I would also add they need to know about uncertainty. Positive thinking, over-statement of claims by doctors, and unfounded optimism are very bad ways for medicine to be conducted in my view.

The most serious downside to positive thinking is that people invest in it. They put their trust in it. When whatever treatment fails then they feel let down, and may become depressed.

Hopeful, cheerful, caring, are different from positive thinking.

 

[Kati]

Wise words @alex3619

 

[Nielk]

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.

 

[Gingergrrl]

My wife became insane and nearly died after taking a very ordinary malaria tablet.

This was most like Larium (which may have another name in the UK vs. US) and is a fluoroquinolone. It is the most toxic of all the quinolones and can cause acute psychosis. This has occurred to many in the military after being forced to take Larium and also to many traveling to Africa for a vacation or safari and became psychotic, violent, suicidal and has led to many deaths. And I am talking about people with absolutely zero prior psychiatric history before taking Larium.

 

[JalapenoLuv]

The hardest thing for self experimentation Alex is finding a MD who will go along with it. Conventional MDs in the USA usually won't and the integrative ones have their own sacred cow theories which they push. I've found that usually the opening with the integratives is when their theories either failed and/or one can scour the research and give good reasons why their suggestions aren't good options.

At that time one can inquire to see if they would allow a trial of so and so and the research showing a plausible possible mechanism of action. The integrative needs to be at least halfway open to science to pull it off. That's how I took an integrative MD who believed in Reiki and Chi and got her to give my experimentation a chance.

Only people with strong science backgrounds really have a chance pulling this off because one has to defend themselves to the MD. Also, MDs of any persuasion are reluctant to try off label drugs if they can't defend a diagnosis-too much possibility of the medical board coming after them.

 

[alex3619]

@JalapenoLuv , I substantially agree, except for one thing. We do lots of experimental things with over the counter drugs, with vitamins, minerals, herbs and new and unusual treatments. Doctors are not gatekeepers on all treatments. Chinese medicine, which I looked into in the 80s, is not regulated nearly as much as MDs are, and things can be tried.

However there is a flip side to using drugs from an MD. Most treatments given are experiments. Doctors do it all the time. They hope it will work, but usually don't know for sure. Its a calculated risk, and hopefully a well calculated risk with good payoff, though sadly this is not always the case. For ME nearly everything is experimental, even if its from an MD, especially the first time it is used on a given patient.

 

[alex3619]

This was most like Larium (which may have another name in the UK vs. US) and is a fluoroquinolone. It is the most toxic of all the quinolones and can cause acute psychosis. This has occurred to many in the military after being forced to take Larium and also to many traveling to Africa for a vacation or safari and became psychotic, violent, suicidal and has led to many deaths. And I am talking about people with absolutely zero prior psychiatric history before taking Larium.

I forget the name of it, but malarial drugs have long been implicated in disorders in children. In particular this was noted in children of armed service personnel. In my own case the question was raised about malarial medication when my parents were in Malaya.

I know someone who wanted to research this formally. Funding Denied. Hmmmmm .....

 

[JalapenoLuv]

Yes I did a Freedom of Information Act request on all bartonella research and exposures at the Fort Dietrick military base. Denied, citing possible use as a weapon of mass destruction.

 

[Hip]

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.

A very valid point. There is actually a forum rule that says you cannot give medical advice on PR. So this means people can describe what they did, and write for example: "This is what I took, and these are the improvements I got from it", but they cannot write: "You should / must / need to take this drug to treat your ME/CFS".

Even then, it can go wrong. A few years ago I suggested to one patient here that the normally innocuous supplement alpha lipoic acid might be helpful for her, as it had been helpful for me. When she took it, it led to a severe crash for a week. I felt very guilty. This makes you think twice about making suggestions.

One of the best pieces of advice on using more experimental treatments is "Start low and go slow". I have seen this many times, indeed I was promoting it from about 1999, though not stated so succinctly and eloquently.

Absolutely. I now tend start any new drug or supplement that I have not taken before at a quarter or less of its normal dose, and observe carefully before increasing the dose. ME/CFS patients can often be extra sensitive to even normally innocuous supplements, so they need to be extra careful.

I have had bad reactions to a number of supplements, as well as to a few drugs.

I myself have spoken positively of 'meditation' and 'mindfulness'. I try to do so in a very cautious manner, but really, I have no more evidence that these things are of any value than any of the weird and not-so-wonderful biological interventions that occasionally get promoted.

Before developing ME/CFS, I had been a keen meditator, mainly using Zen and Buddhist mindfulness meditation technique. I would happily meditate for hours, and found it easy to get into that zone of mindful, sensitive consciousness. I was a big believer in the benefits of meditation.

However, since getting ME/CFS, I find my power of even ordinary daily consciousness is so dulled, that my mind no longer seems to be able to host those states of mindful consciousness I was able to attain before.

Whether this applies to all other ME/CFS patients, I don't know, but in my experience, ME/CFS is a kind of draining of consciousness. And alongside this deficit of consciousness, I have also noticed a large loss of spiritual awareness. Prior to ME/CFS I had a somewhat spiritual, mystical disposition, but that also disappeared.

I started a thread on this subject here: Does brain fog reduce the spiritual sense? and from the replies in that thread it seems I am not the only patient who feels they suffered spiritual demise. For me this is one of the greatest loses of getting ME/CFS, because my mystical outlook provided me with so much meaning in my life.

 

[Jonathan Edwards]

This was most likely Larium (which may have another name in the UK vs. US) and is a fluoroquinolone. It is the most toxic of all the quinolones and can cause acute psychosis.

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

 

[xchocoholic]

Once I sat down and read the naturopathic textbook. It had a good deal of woo mixed in with better chapters on detoxification, etc. While I like that naturopaths are rigorous about supplements the fact that they still teach and use quackery diminishes their credibility.

I've seen this logic used by some traditional doctors on the web to discredit integrative or natural medicine. I agree with some of their criticism. I only get massages to relieve muscle cramping and cringe if a massage therapist wants to cleanse my aura. I respect others rights to believe in this but imho this kind of fringe thinking hurts the credibility of this fledgling field.

Fwiw. Having been exposed to forum rules and recommendations repeatedly from day 1, back in 2005, I never worried about relating my experiences or giving my opinion as long as I followed the instructions. Maybe we just need to clarify that better here.

The importance of doing your own research was drilled into my head at the very first forum I joined. And repeated on other forums.

Imho, I can't emphasize the importance of this enough. Drawing your conclusions from your research leads to taking charge of your health. And less dependence on medical professionals.

Tc .. x

 

[MeSci]

I've seen this logic used by some traditional doctors on the web to discredit integrative or natural medicine.

I think that you mean 'conventional' (i.e. modern) doctors rather than traditional. Traditional medicine is based on natural compounds and non-pharmacological/non-surgical treatments (e.g. TCM).

 

[xchocoholic]

I think that you mean 'conventional' (i.e. modern) doctors rather than traditional. Traditional medicine is based on natural compounds and non-pharmacological/non-surgical treatments (e.g. TCM).

In the US, it means those following big pharma's and the AMA's recommendations.

Odd isn't it ?

 

[MeSci]

In the US, it means those following big pharma's and the AMA's recommendations.

Not according to most of the hits I get from an internet search.

 

[xchocoholic]

Not according to most of the hits I get from an internet search.

Try again. Lol. I'm living here and from my experience this is how we use that term.

I think it's wrong too but it's the norm here.