What other drugs does Dr Systrom use when treating CFS / ME?

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DonPepe

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If someone improves on a certain drug or supplement, no one has a right to demand a clinical trial to "prove" they improved. 14% say "this works for me". That's something. 5% say they feel "much better". So for that 19% of poll takers, that's significant.

BCAAs caused a huge improvement for me - reducing my PEM recovery time from 2 - 3 days to 1 day (if I don't severely overdo it). I've been taking them since 2014. I don't have a clinical trial to back up my experience, but I do have my experience. That's all many of us have. So I'll take it. btw, if I slack off taking them for more than a few days, I start to go back downhill rather quickly, so they are my number one supplement I do not run out of.

fwiw, ldn did not help me, made me feel tired and spacey and woozy. BUT - if someone else says it helped them, then more power to them, I'm glad for them.

I've had ME/CFS for 26 years. We're still struggling to be taken seriously. We can't demand clinical trials when almost no money has been allocated for research, etc.



Well, so what. Many say they have had improvement (19% in the poll). It's not up to you to tell them they're wrong.

If I had demanded a clinical trial before trying BCAAs, I'd have spent the last 10 years in more misery than I needed to.

Also, drug companies have so many ways of fudging clinical trial results and burying harsh "side" effects and distorting the results. They may be a gold standard but one still needs to take them with a bottle of salt. (as opposed to a grain)

There is no need to get personal. It’s just my unqualified opinion that’s all. I’m not alone in my view in LDN many on PR think it’s bunkum but don’t wish to put their head above the parapet for fear of people reacting a bit like you are.
 

cfs since 1998

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I don't think LDN is snake oil. There are scientific rationales to back up its use. But the same can be said of many drugs that don't end up working. I do agree that it seems like a lot of ME/CFS patients have tried it and it has not benefited many. It will be interesting to see the results of the LIFT trial, though I think it might be too short to draw conclusions about LDN. Mestinon is much faster acting by acting directly on nerve function so I don't think will have the same problem with the length of the trial.
 

DonPepe

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I don't think LDN is snake oil. There are scientific rationales to back up its use. But the same can be said of many drugs that don't end up working. I do agree that it seems like a lot of ME/CFS patients have tried it and it has not benefited many. It will be interesting to see the results of the LIFT trial, though I think it might be too short to draw conclusions about LDN. Mestinon is much faster acting by acting directly on nerve function so I don't think will have the same problem with the length of the trial.

A doctor I know thinks it could help a minority of patients for other reasons such as alcohol dependency or drug addictions. There’s a whole host of reasons such as co-morbidities. It may help the minority for plenty of reasons other than ME/CFS.
 

Wishful

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I'm not aware of any treatment for ME that has been proven to work for everyone in a clinical trial. ME is a disease which has treatments that work well for a few people, make a few people worse, and have little if any effect on the majority. How well a treatment works in a clinical trial is probably more about how subjects are selected and how the study is run (any maybe how how the data is fudged to achieve a desired result).

LDN worked wonderfully for me. It only blocked my non-physically-caused pain, but it did that 100%. Wonderful stuff ... for me, but not everyone else. Likewise, cumin blocked my PEM 100%, eventually curing at least the physically-triggered PEM. Wonderful stuff ... for me, but only a few other people have reported slight (but useful) benefits. The same for T2: wonderful for me, not helpful for others. While these treatments would most likely fail a typical clinical trial, they made a huge difference in my quality of life.

You're welcome to wait until a treatment for ME manages to achieve 80% (or whatever success rate you require). Alternatively, you can self-experiment and maybe discover something--maybe a spice or food or whatever--that works well for you, even if it would fail a typical clinical trial.

Even if Mestinon worked for 66% of the subjects, that doesn't guarantee that it would work for you. That's just how this disease is. I consider the "this worked for me" reports as treatments that might have a slightly higher chance of success than something selected at random from a pharmacy or grocery store--or found in the woods, or back yard--but not greatly higher. Mestinon might not work for me, but maybe a bug scraped off my windshield just happens to have the right molecule or microbe that would be an effective treatment for me. While that probability is non-zero, it's not high enough to encourage me to lick my windshield. I'm just happy with the effective treatments that did work for me that I accidentally stumbled across, despite the lack of clinical evidence.
 

JES

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I don't think LDN is particularly poorly tolerated in general. Naltrexone is used in ten times higher dose to treat alcoholism. The side effects are typically proportional with the dosage as well.

I reckon I'm in the middle in thinking LDN may be somewhat overhyped, but I wouldn't call it snake oil either. LDN has a well-studied mechanism how it works by blocking endorphin receptors. It is also understood that LDN is a Toll-like receptor 4 (TLR4) antagonist, which could help to reduce neuroinflammation. I would only classify something as snake oil if it has no meaningful mechanism by which it could work.
 

pamojja

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fwiw, ldn did not help me, made me feel tired and spacey and woozy. BUT - if someone else says it helped them, then more power to them, I'm glad for them.
There is no need to get personal

Please read again. There was nothing in Mary's post directed at you personally. Other than she would see in a patient's partial success with LDN reasons for joy. Why the depreciation?

I’m not alone in my view in LDN many on PR think it’s bunkum but don’t wish to put their head above the parapet for fear of people reacting a bit like you are.

On the other hand, calling an in some respects or only some patients working ' treatment 'bunkum' can be taken by those patients personal.

The danger with your derogatory speech is, that someone with the opposite experience might fear to raise their head. But not at all if someone can rejoice in others successes with whatever, even without one's own.

it could help a minority of patients for other reasons such as alcohol dependency or drug addictions. There’s a whole host of reasons such as co-morbidities.

Sorry, it helps my with my excessive sleep need. I haven't touched alcohol or drugs since almost 40 years as a teenager. So neither is how I help my multitude of symptoms bunkum, nor have I ever been an addict.

ME/CFS is defined by a set of complex symptoms. Not one of them is without various differing co-morbidities.
 
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