Someone recently commented that because he didn’t derive benefits from the Pridgen protocol that it must be snake oil. That would make sense if everyone with fibromyalgia was the same – and could be expected to respond similarly to a treatment but a recent New York Times article “Can a Treatment Help Me? There’s a Statistic For That” indicates that that’s not true even for well-characterized illness.

role of dice drug treatment fibromyalgia

Drug treatment even in well characterized disorders is something of a crap shoot. Sometimes it comes up aces, often it does not.

The fact is that treating illnesses – even well characterized, heavily studied illnesses – can still be something of a crap shoot. Lots of times drugs don’t work. In fact, many drugs in common use don’t work the majority of the time. Many don’t even work ten percent of the time. Some that don’t work at all are in common use.

Number Needed To Treat

Welcome to the Number Needed to Treat (NNT) statistic. The NNT refers to the number of patients needed to treat with a drug in order for one to have a significantly improved result.

Check out a  website – theNNT.com  that’s devoted to providing NNT data – you might be a bit shocked.

The NNT, for using antibiotics, for instance, to treat a sinus infection, is 15. Studies indicate that you need to give antibiotics to 15 people with sinusitis in order to have one person derive benefit from it.  Unfortunately since 1 out of 8 people who take the drug are harmed by it the risk/benefits ratio for antibiotics for sinusitis appears to be negative. Despite the miserably low NNT number and risk of side effects, one out of every five prescriptions for antibiotics written in the U.S. is for, guess what – sinusitis.

Humans are simply too complex to expect drugs to effect everyone or even  most people in the same way...

Humans are simply too complex to expect drugs to effect everyone or even most people in the same way…

The fact that four out of five people with sinusitis given placebo’s improve presents the dilemma. In some disorders, many people improve whether or not you give them a drug. Very few people with sinusitis get help from antibiotics but because virtually everyone with sinusitis gets antibiotics and most people improve over time, it looks like it’s the drug that’s doing it. The studies indicate, though, that’s only true 6 percent of the time. Since studies are usually done on

Since studies are usually done on a select population the NNT’s given are probably lower than in real-life situations.

Despite the fact that doctors often give antibiotics to people with bronchitis the number of bronchitis patients they would need to treat in order for one person to recover more quickly from bronchitis is zero – no studies suggest that antibiotics significantly help people recover from bronchitis at all.

No less than 23 trials involving 2,000 patients indicate they don’t provide any significant benefit at all to people with sciatica (NNT=0) either. That hasn’t prevented millions of people from getting epidural shots for sciatica.

PSA tests for prostate cancer are still controversial, but this site suggests that that they’re useless (NNT=0) for preventing death from cancer and can cause significant harms due to unnecessary biopsies.  (The test may or may not be helpful in high-risk patients). The list goes on and on…Antivirals look like they should help people with Bell’s Palsy, but it turns out that they don’t.

Using defibrillation, on the other hand, in a person who’s having a heart attack is  very effective; it actually prevents death in one out of every 2.5 people.

Many drugs are not listed on the NNT site presumably because the study evidence wasn’t sufficient or because the review has not been done yet. None of the drugs or treatments listed referred to fibromyalgia or chronic fatigue syndrome either, but the trend was pretty clear. Even in well-defined disorders many drugs only help a relatively small percentage of patients.

Giving Drug Trials A Break

That’s why we should probably reconsider our ideas about what constitutes a successful drug trial. Should we really expect Ampligen to be effective in everyone? Should we be surprised if the Pridgen protocol doesn’t help someone? Should we hope for even fifty percent success rates with Rituximab?  Given how varied the ME/CFS and FM populations are we obviously shouldn’t.

effective drug trials for ME/CFS and FM

Would a twenty percent success rate be a cause for celebration? In these big disorders it probably would be.

A ten or  twenty percent success rate with a drug is actually a pretty good thing. It’s why your own experience with a drug or treatment – whether good or bad – doesn’t really say all that much about how another person with ME/CFS or FM will react to it.

Probably what we should hope for is a packet of drugs, each of which help some people with ME/CFS and/or FM, and which can be fit into already existing treatment regimens. Sometimes drugs or treatments really do hit the spot and a person is effectively cured, but my guess is that that’s rare and will remain rare for some time. It’s far more likely that drugs or supplements or drug/supplement combinations (Synergy trial) will be found that are helpful – not curative in themselves – but which may provide critical  components for improved health.

What Does Work?

Personalized medicine – medicine tailored to the individual, not the group – is the way out of the NNT dilemma and medicine is moving that way.

The advent of companies able to do gene sequencing for individuals such as 23andMe are laying the foundations for one aspect of personal medicine. As more genetic information becomes available the types and doses of drugs you take will be tailored to your genetic makeup and gene expression.

personalized medicine fibromyalgia and chronic fatigue syndrome

Personalized medicine is where many future breakthroughs in treatment lie

Perhaps the closest ME/CFS and FM patients can get to personalized medicine may simply be by seeing experts (perhaps several of them, unfortunately) who are able to use their expertise to treatments to the individual.

Importantly, this list does not say anything about drug or treatment protocols.  Chronic illnesses are probably much more likely to respond to multidimensional treatment protocols designed to fit specific patients needs than to single treatments. My guess is that the kinds of protocols that encompass diet, activity management, stress reduction, supplements and drugs – that encompass everything possible, really- are probably going to be the way to go for a long time.


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