Trying unproven treatments - discussion thread

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poetinsf

Senior Member (Voting Rights)
Moved from How Migraine & Chronic Fatigue Syndrome (ME/CFS) Are Connected: interview with James Baraniuk

I think there was a pilot trial of Abilify. Some patients got huge improvement while some others had adverse effects. So, I once tried Abilify that my ex was on. Felt a little funny but it didn't do anything for me.

My attitude on drugs and alternative therapies: why not try it as long as it is cheap and safe enough? Or under doc's supervision. Some patients get good results with the likes of LDN, Rapamycin, steroid, etc. I never did took up on the offer, but I do appreciate doctors who says "whatever you want". That's probably the best doctors can do knowing that there is nothing proven effective.
 
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I was open to trying plenty of things for the first 8-10 years of ME/CFS, but learned that I was far more successful at getting deterioration from the exertion of attending appointments and side effects than anything resembling a benefit.

Here’s the problem, from my point of view:

In open label studies, ie no placebo, no blinding, no randomisation, you get really high “response” rates reported, no matter what the drug is:
Only Fluge & Mella went on to do a randomised, placebo controlled, blinded study, and with those controls in place:
Overall response rates were 35.1% in the placebo group and 26.0% in the rituximab group
Click to expand...
Ie whatever 62% of patients were responding to in the open label study was not rituximab. The improvements reported in the open-label trial of rituximab were due to things like regression to the mean, spontaneous fluctuations, the hope-generating positive effect of being in a trial, being treated by kind, competent professionals, and how the latter affects how you assess your illness and fill in questionnaires.

About whether drugs are safe or not, Abilify has a much more problematic safety profile than LDN, and that’s why the MEA’s statements on these two drugs are quite different in tone:

https://meassociation.org.uk/2021/0...does not,better determine safety and efficacy.

Vs

https://meassociation.org.uk/2019/1...se-naltrexone-ldn-in-me-cfs-02-december-2019/

So I’m not going to take a small risk of tardive dyskinesia or neuroleptic malignant syndrome or suicidal ideation from Abilify or glaucoma or weight loss from Topamax until someone demonstrates benefit on decent outcome measures. LDN is the one I'd be most hopeful about, and hopefully good quality RCTs will be published soon in other conditions.

I get that other people weigh up the risks and benefits differently.
 
I also always have the words of an excellent neurologist ringing in my ears. He was appalled that I had been put on an antidepressant despite not having depression (it was not one of the ones that can be helpful for pain or sleep, nor did I have issues with pain or sleep at the time, and I didn't feel any better on it). He said "Don't mess with your brain chemistry unless you absolutely have to" and took me right off it.

In desperation, I was still persuaded to try two more brain-chemistry-altering drugs in later years that I was told would improve my energy, got horrible side-effects and felt worse rather than better, then decided to live by the neurologist's wise adage.
 
You can mess around with a lot of the body and not do too much damage to your overall quality of life. If you lose a finger or even a foot, or go deaf in one ear, etc, your life will broadly carry on much as before.

But messing around with the central nervous system – mechanically, chemically, or psychologically – is a whole different and way more dangerous game. Doing damage there can really trash your life.
 
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