Poll - In your opinion, is it worth experimenting with therapeutics of unknown efficacy?

[chillier]

A question in light of my other post about trying tenofovir. Clinicians must follow the Hippocratic oath 'at first, do no harm' , but what's your opinion as an individual trying something out on yourself?

 

[BrightCandle]

Clinicians must follow the Hippocratic oath 'at first, do no harm'

As far as I know they no longer take the Hippocratic oath (https://hansard.parliament.uk/Lords...138000347/GeneralPractitionersHippocraticOath) and it was also changed in 1997 to be a much broader statement and its not done anymore. They can be driven by whatever they want to be, which seems to be the same prejudices that society has at the moment.

I haven't seen any such things here but its common on Phoenix Rising Forums where experiments on drugs, supplements and procedures do get discussed.

 

[Trish]

I don't think I can answer your survey.

I have experimented with alt med in the past, all a waste of effort and money and some detrimental.

I now don't do any experimental treatments as I don't want to risk getting sicker and not being able to care for myself and my daughter.

And I now know a lot more about looking at evidence and not being caught up in ancedotal stories of improvement and recovery which often turns out to be short term and followed by bad relapses; and/or money making promotions.

 

[Keela Too]

I too am reluctant to check one or other box. I obviously HAVE tried a multitude of different things - haven’t we all!

However, I am very cautious about what I do try, and always search for the best evidence I can find before attempting anything that could potentially cause me harm.

So although for me, the answer is YES I try things, I don’t want to check that box, as I don’t want to suggest that others should do the same!

 

[chillier]

@Trish @Keela Too These are understandable positions. The way this disease fluctuates makes it almost impossible to attribute cause and effect a lot of the time, in my case at least. A lot of the way the disease progresses appears to be random noise, but I can still feel my mind desperately try to misattribute something to it. It's like it's designed to generate conspiracy theories and snake oils.

 

[Kitty]

I voted for the last one, because I don't really think it's worth experimenting with some things, particularly medicines, outside of a supervised trial.

However, pacing in particular is low risk, and I'd feel okay about recommending someone with apparent post-viral illness try it for a few weeks to see if helps stabilise them. Approaches such as trying to stop doing things before you get too tired, or scheduling recovery gaps between activities where possible—basic common sense, really.

 

[Mij]

A question in light of my other post about trying tenofovir. Clinicians must follow the Hippocratic oath 'at first, do no harm' , but what's your opinion as an individual trying something out on yourself?

I was prescribed Immunovir by a virologist who did a small study on CFS patients. None of them experienced bad side-effects, they just felt 'less tired'. Me on the other hand had a complete relapse after only taking it for 3 weeks. I never returned to my baseline which was at 80% improvement.

So 'unknown' and known treatments will give different results for pwME. It's all a risk imo.

 

[BrightCandle]

Without the treatments I take daily I tend to severe illness within two weeks, twice I have come off my drugs and twice its been bad news for months, very certain they do work. I can sustain moderate disease if I take them. The various papers on metabolic and energy issues around the disease have informed the things I take, they aren't random they are very much based on the science around the disease of known effects and where something may help I do at least trial it but a lot of it hasn't helped and isn't maintained in my stack. Honestly the weirdest thing I have done is near ultrasounded my kidneys, but it was beneficial to an extent! I can't say no because without my daily drugs I wouldn't be writing on this forum I would be in 10/10 pain in agony in bed unable to do anything with regular loss of sight and hearing. Its just less painful this way and from DALY point of view I'll take a year like this than 10 like that.

Were there medical acceptance of the disease and the NHS wasn't a dangerous place to be as an ME sufferer this might be different, I might have effective treatment for the migraines and everything else, but the fact is that isn't on offer and expecting me to be in that amount of pain and just die in that level of suffering wasn't ever going to happen.

 

[DokaGirl]

I don't think I can answer your survey.

I have experimented with alt med in the past, all a waste of effort and money and some detrimental.

I now don't do any experimental treatments as I don't want to risk getting sicker and not being able to care for myself and my daughter.

And I now know a lot more about looking at evidence and not being caught up in ancedotal stories of improvement and recovery which often turns out to be short term and followed by bad relapses; and/or money making promotions.

Agreed.

What garbage, abuse and harm I have been through with alternative medicine. Much of what kind of helps, which is very little, I settled on myself without the very inflated costs levied by alternative practitioners.

 

[Arnie Pye]

Are vitamins and minerals considered to be the province of alt med only?

Those are what I use and experiment with mostly. I always do my due diligence on benefits, side effects, dangers, interactions with anything else I'm taking. And that is before I even spend anything at all.

I have taken a few other things e.g. essential, conditionally essential, and non-essential amino acids, fibre supplements of various kinds, and I've experimented with some adaptogens.

Edit : I've never regretted my research and experiments, even those which didn't go well.

 

[Mij]

My experience with vitamins and minerals is that there is only noticeable improvement if you have deficiencies.

 

[rvallee]

It's probably not worth doing it alone. In my case literally impossible with brain fog.

This would be a very smart thing to do with the right supervision, in a program meant to learn and produce useful knowledge with scientific rigor and very careful record-keeping.

Unfortunately, we can't have smart things yet. Somehow.

 

[Keela Too]

I’ve not tended to try “therapies” as such but I’ve changed up lots of things.

Diet (low carb, unprocessed foods)

Electrolytes (which I don’t take constantly but sometimes they seem to help pull me out of a dip).

Mobility aids (I now use a 2wheeled electric scooter for “walks”).

Quiet spaces (I can go more places now I have a campervan to retreat to for “downtime”.)

Ear plugs. (I’m very noise sensitive and now have an array of different ear plugs. All very discreet. And of course the full on noise cancelling headphones too!)

Cold water!!! Yup this is my latest life hack. It seems to help calm something in me and I sleep better & therefore I think I recover better. I now run a shower first warm then cold every morning (& actually now I think about it I CAN now shower daily. Wow.). I also have cool packs kept in the fridge in my camper to use when sleeping in it with no shower available.

Do the folk who think CBT will cure us not realise just how much we work at attempting to be normal again!!

 

[Jonathan Edwards]

I tried a bottle of Tokay for my wife's birthday - it was quite good.
The side effects were £33.99.

 

[FMMM1]

Question - why has no one, to our knowledge, coincidentally taken a drug which cured their ME/CFS?

OK rituximab was thought to work i.e. after it appeared to cure people who had ME/CFS but that doesn't appear to have held up.

 

[cassava7]

Question - why has no one, to our knowledge, coincidentally taken a drug which cured their ME/CFS?

OK rituximab was thought to work i.e. after it appeared to cure people who had ME/CFS but that doesn't appear to have held up.

Rituximab looked like a classic case of a phase 2 showing positive outcomes that didn’t hold up in phase 3.

You make a very good point — many drugs have been tested for ME/CFS outside of clinical trials (sometimes prescribed quite liberally, for example by well known ME/CFS specialist physicians) yet none has coincidentally put someone in remission (save for misdiagnosed people) or made more than a handful of people significantly better. Even in the latter case, that the blinded rituximab trial found a placebo response of 35% tells us to take any reported improvement from an open label, N=1 experiment with a grain of salt. Or rather a mouthful.

Being severe and having had my ME made more severe by a drug, I cannot afford to further deteriorate through an avoidable mistake. My personal policy before attempting any treatment that I may come across is to run the following assessment:

1) side effects: cross-checking multiple sources (for drugs: leaflets from my country, UK & US; NHS website; MedlinePlus.gov; Wikipedia; searching for literature; patient feedback)
2) review the preliminary evidence for ME/CFS, POTS and more or less related conditions; if unavailable, try to judge whether the proposed mechanism of action may be somewhat plausible
3) price, if not reimbursed by social security
4) accessibility, as I am bedbound and do not want the treatment to impose any further burden to my carers

This filters out 99.9% of candidates: many at step 1 and the rest at step 2.

 

[bobbler]

Question - why has no one, to our knowledge, coincidentally taken a drug which cured their ME/CFS?

OK rituximab was thought to work i.e. after it appeared to cure people who had ME/CFS but that doesn't appear to have held up.

I think* phototherapy + other things but those hadn’t worked until that was added (a certain type of antibiotic long term + short term steroids) to knock back my immune system for another condition (probably caused by ME underlying it) helped. I’d had a terrible few years health event for ME wise in the run up to that.

For about a year max though then off all of it and doing rather a lot my health was back downhill. It’s not the easiest treatment to go through either. As phototherapy is used for bad psoriasis too and probably other things I wondered whether you might have enough who'd tried it to maybe have some with ME saying the same if it worked that way for them?

but I wonder if there are not similar things that knock at certain parts of immune system that work for certain people

it’s been long enough since the last one that even as a cautious person who can’t stand well I’d give that one another go right now for me. Not as a cure perhaps but maybe the boost that just starts a virtuous circle enough to get feet under me to a slightly better quality of life.

 

[Kitty]

Question - why has no one, to our knowledge, coincidentally taken a drug which cured their ME/CFS?

I suspect that as with a lot of other chronic conditions, it's not currently amenable to cure. If there is something out there that could produce a marked improvement but no one realises yet, it might be because it's a less-than-benign medicine that no doctor would want to muck about with on the off-chance.

If there is an unknown drug that could help a substantial minority, it might depend once again on coincidental improvements in people who have ME and something else, which are picked up by observant clinicians who take ME seriously, as happened with rituximab. Those preconditions probably don't obtain very often!

 

[Snow Leopard]

If you don't try anything people accuse you of not wanting to get better.

 

[DokaGirl]

I tried a bottle of Tokay for my wife's birthday - it was quite good.
The side effects were £33.99.