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

[shak8]

I received my LDN capsules tonight, but after reading the FDA inspection data on the compounding pharmacy that filled the prescription, I got turned off, way off.
I am not going to swallow a single capsule.

There is no way to know exactly what is in the capsule, if the dosage is right (actually in 9/2002 the FDA inspection found that the capsule machine employee was underfilling the capsules at the compounding pharmacy that filled my LDN Rx).

If/when LDN is approved, the drug will be made to adhere to good manufacturing processes (GMPs) and the drug is tested and dosage has to meet specs. Other ingredients are recorded properly.

The pharmacy that filled my LDN Rx was cited numerous times for violations and they were pretty gross. Undertrained and poorly supervised employees, cleanliness lapses, powder from other drugs coating walls, all sorts of fun stuff.

And even if I did get a good response from LDN, I would still have to reorder from a compounding pharmacy and I'm unwilling to do that.

 

[shak8]

https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.37734

Last (?) word from me about LDN. Younger's 22 month study of 28 FM subjects 2008-2010.

He had the subjects guess if they were in the placebo 4 week phase, or the LDN 12 week phase (had them guess several times during the LDN phase).

And they guessed right only what you'd expect from random chance. So much for the fancy statistics used that yielded a 28% decrease in pain versus a placebo decrease in pain of 18%.

I remain unimpressed. Also, it did not improve fatigue levels.

Edited to correct study link above.
And added content below.

There is some controversy in my mind that Younger allows patients with abnormal ESR lab values to become subjects. His cut off is 60 or less and the upper limit of normal for women is 29. He does state that high ESRs respond very well to LDN especially in lowering pro-inflammatory cytokines.

Sound scientific ethics? Or am I missing something. In fairness, I haven't asked for his ESR data.

 

[hibiscuswahine]

I want scientific evidence now especially for medications, which I am very sensitive to.

Most treatments aren’t available here in my country due to our tight regulatory system where placebo-controlled trials are the gold standard to get public funding and the cost is prohibitive and often illegal to get them from overseas. Many of us can’t afford medical insurance and there are no specialist doctors/clinics (possibly a boon at times) and sometimes a long way to get emergency care.

Informed consent is important, not having a random GP who thinks they know the literature, say here is an option for you and “this has been used in the states” (USA) and it worked for this “pwME”, who may have totally different comorbidities to what I have. It is out of their scope of practice and unethical as there are no randomised control trials.

This perpetuates hopium, and lack of useful data for the medical community. Then other pwME feel like they are missing out and waste lots of money on supplements, tVNS or the latest fad….I am getting older and iller and I do not want to jeopardise that by the continuous pursuit for a magic pill/device.

edit: typos

 

[Lilas]

In my case, if there's one thing I learned pretty quickly and the hard way, it's that my poor ME body doesn't like big changes... as if it was easily unbalanced. Regularity and discipline are essential companions for me.

Let me explain. At the start of ME, I had to try about twenty medications (significant and recalcitrant pain, major sleep disorder, nausea, chronic heartburn, etc.) I had many side effects and/or allergies/intolerances. It was extremely trying. Therefore, you will understand that when I finally found what helped me the best and reached a relative balance, I stopped there.

Obviously, like any pwme, I've been observing myself for 13 years trying to discern what caused a PEM or any other hadly tolerable increase in particular symptom. So, I simply got to know myself as well as possible to avoid the worst. Despite some unknowns who remain present, I know grosso modo what helps me and what risks making my condition worse. That's all. I await significant, important, objective evidence from a methodologically practically flawless study (and replicated !) before I dare embark on a treatment. I'm definitely the cautious type. Well, ok, I've been waiting for more than a decade already... but I still have hope. Of course, a lucid hope.