This is a new service and it has to interact with the existing medical system, so they are currently expensive, starting at $5,000 for a research report. (Keeping in mind that a basic report involves a lot of work by people who must be good at math.) If you have a sick friend who can afford it—especially if the regular system is failing them, and they want (or you want) their next step to be more science instead of “alternative medicine” or whatever—please do refer them to MetaMed immediately.
A friend of mine suffers from debilitating effects of fibromyalgia, to the degree that she had to quit her job. She has tried all possible conventional and alternative medicine, with little success. She would certainly be prepared to pay $5000 or more for a near-certain relief, but not for yet another literature search of undetermined benefit. I’m guessing she is not the target audience for MetaMed?
Well, according to their FAQ, they offer a trial service. So your friend would not have to continue to a larger report if the trial seemed to be indicating low benefits of further research.
Can I try MetaMed before committing to a large purchase?
Yes. If your case has a larger budget, we can start with a smaller, trial report to ensure quality of service, and confirm that MetaMed is the right choice for you.
And they also offer Financial aid—There is almost no information about this posted, other than that it exists. I guess you would have to call to determine more about how it worked. If your friend did qualify, that would be a substantial boon:
Once you have consulted with our medical team, if you need financial aid to help with the cost of your MetaMed service, we will email you an application right away.
And it looks like overall there are at least three tiers of potential research:
Those results do not impress me as to the value of their research. There is nothing there that isn’t covered by Up-to-Date (http://www.uptodate.com/home) and every hospital I’ve done stats work for (several, all over the country both community and academic) has provided their physicians with up to date access.
Your best bet (apparently) would be simply asking your physician for the up-to-date report for your diagnosis. If your physician does not have up-to-date access, get a referral to the nearest academic center.
I’m unsure why I’ve been voted down here- if shminux’s friend wants a version of a report similar in quality to what metamed can provide she can ask her physician if the physician has up-to-date (or an other research aggregator) access. If the physician doesn’t, its potentially a measure of quality (which can otherwise be hard to judge), and she should get a referral to an academic medical center, which will definitely have something like up-to-date available. This seems to me like decently practical advice for those who have insurance, but don’t have the money for metamed. I’m still relatively new so I’m requesting explicit feedback to improve the quality of my posts.
Edited to Add: According to the company, > 90% of American academic hospitals already have subscribed to Up-to-Date, so getting a referral to an academic center has a great chance of getting you to someone with already-paid-for-access to this sort of report.
I’m glad you linked competition, so we can compare similar industries for reference (I asked a very similar thing about Watson.) One item that stood out on their site:
Dr. Gordon Guyatt from McMaster University, who coined the term “evidence-based medicine,” makes 6-8 visits to UpToDate per year to work with UpToDate editors. Watch him in action with our physician editors as they review and analyze medical evidence that informs UpToDate graded recommendations.
And I was also able to find their methods for that grading as well, in case anyone wants to compare Meta Research Methods across Meta Research Organizations:
Sleep apnea seems like something regular doctors should be able to figure out, and I know gout has at least been known for a long time. Are these meant to be examples of what the reports look like more than examples of how Metamed can find obscure treatments? $5000 seems a bit much for someone to be told ‘get checked for sleep apnea and lose weight’.
If she’s tried all possible conventional and alternative medicine, MetaMed will not help. If she missed something (1) obscure but promising, (2) cutting edge and promising, or (3) unique about her particular body that makes an unusual treatment promising; MetaMed might be able to help.
So, if $5000 is what certain relief is worth to her, MetaMed isn’t for her. If certain relief is worth $10000 to her, she should estimate how likely it is that paid, reasonably savvy researchers can find something she’s missed; and go for it if she feels it’s over 50% likely.
she should estimate how likely it is that paid, reasonably savvy researchers can find something she’s missed; and go for it if she feels it’s over 50% likely.
No, it’s much worse than that: “how likely it is that paid, reasonably savvy researchers can find something she’s missed” AND it has a near certainty of helping. Current prior: nothing has helped so far, so the odds of something she missed ended up being useful is pretty low. If the estimate of helpfulness is, say, 1% (that’s pretty optimistic), and the odds that MetaMed will find something new is 50%, then certain relief has to be worth $100k.
So about what do you think it IS worth?
FYI, I think, based on experience with people whom have tried everything, that a 1% chance of finding something is unrealistically low. 20% with the first $5K and a further 30% with the next 35K would fit my past experience.
Define tried everything? Your prior is that there is a 1⁄5 chance a handful of researchers can find something helpful in 24 hours that isn’t listed in something like an Up-To-Date report on the diagnosis (a decent definition of ‘everything’)?
Does Metamed do patient tracking to see if their recommendations lead to relief? Or do they deliver a report and move on?
Your prior is that there is a 1⁄5 chance a handful of researchers can find something helpful in 24 hours that isn’t listed in something like an Up-To-Date report on the diagnosis (a decent definition of ‘everything’)?
“It is frequently stated that it takes an average of 17 years for research evidence to reach clinical practice. Balas and Bohen, Grant, and Wratschko all estimated a time lag of 17 years measuring different points of the process.”
Granted, I know very little about Up-To-Date, but I would be surprised if they completely eliminated that 17-year lag, especially in the more obscure conditions. They do, after all, have to cover all the conditions, and their return on investment is obviously going to be much higher on common conditions than on obscure ones. In fact, if they put out a fantastically detailed report on Stage III Boneitis (fictional) and nobody suffers a case that year, they’ve wasted their money. I strongly suspect Up-To-Date is aware of this, though I obviously have no way of knowing whether it affects their decisions.
MetaMed’s offer is, as far as I understand it, “pay us 5k and we’ll eliminate the 17-year lag for your particular case”. This lets them plausibly offer value that Up-To-Date can’t, in some cases.
Disclaimer: I am not associated with MetaMed, but I do think they’re cool.
Have you actually read the metamed sample reports/what do you think metamed actually does? As far as I can tell, their core product is to have a team of medical and phd students do a literature search for about 1 working day (compare to Up-to-date, where actual researchers in various fields write the reports and clinicians edit the treatment plans). This seems highly unlikely to move that 17 year lag even a little bit.
I have no horse in this race, but I have worked as a statistician for hospital researchers and for health insurance companies. I just happen to think metamed’s boosters here are dramatically underestimating the availability of evidence-based-medicine literature surveys in the clinical hospital setting.
Current prior: nothing has helped so far, so the odds of something she missed ended up being useful is pretty low.
This assumes she’s good at sifting through the massive expanse of information available, and good at implementing the suggestions therein. These are two extremely questionable assumptions. Knowing nothing about her except that she has severe fibromyalgia and that she’s the friend of a frequent poster on LW—two factors that hardly seem very relevant, and I’d put the likelihood of those two assumptions holding up to be very low. Quite bluntly, most people have no idea what’s really out there. The Internet is a vast space.
If the estimate of helpfulness is, say, 1% (that’s pretty optimistic)
Saying 1% is extremely optimistic… about the quality and competence of the medical profession as encountered by average people with mildly unusual conditions.
That assumes they find only one thing that she hasn’t tried. I have a sister with fibro and some cursory googling on my part suggests that there are so many theories out about what’s wrong and what can bring relief that it’s difficult to believe that a systematic search by good researchers will only turn up a single thing that she hasn’t tried. That said, you’re right that 1% helpfulness is probably pretty optimistic.
All possible conventional and alternative medicine? I doubt it. This is a mind-destroying sentence if I ever saw one. I’d suggest re-wording it to “she’s tried a ton of different approaches both from conventional and alternative medicine”.
First thing to be said: Fibromyalgia is one of those health issues where there are no widely adopted hypotheses for the base mechanism at work. This means, quite simply, that there is little hope for targeting it specifically. It’s not a case where e.g. your lips are chapped and your knuckles are splitting, and one of the first places you look is hydration—more water, more trace minerals, etc. Instead it’s a health issue where you have nothing to target, and your only real hope is to do whatever you can to improve your general health, and hope whatever the yet-to-be-discovered underlying cause is taken out by fortunate accident.
Look to the other symptoms. What other symptoms does she have? It doesn’t matter whether they’re considered to be related. Constipation, headaches, splitting nails, PMS, dry skin, cold extremities, dandruff, frequent colds, dizziness upon standing too quickly, acne… anything at all. Note it, target it, fix it. Keep doing this for years. Make a checklist. Anything to be considered a symptom. Notice it, treat it, move on. Do this for a long enough time, and either the fibromyalgia will go away or get better, or it won’t. But at least you tried, and believe me: Her life will be better either way. Well, unless she doesn’t like hard work.
Potential leads I found through a few brief Google searches:
Not sure why the parent is upvoted so much. Trivial and rather useless advice, some platitudes, a few rather suspect google hits (paleohacks? really?), and a veiled insult “unless she doesn’t like hard work”.
I’m surprised as well. I expected to be downvoted to −2 or so pretty quickly, and stay around there.
As for your disagreements, I should stress that what I said is perhaps the absolute most important thing for the average person with a health issue like that to hear. All too many people get hung up on trying to target the problem specifically, when they’re dealing with an issue where doing so is not practical. Day after day, they ask, “What causes fibromyalgia? What are the new treatments suggested for it?” They remain fixated on these questions, while they sweep all sorts of other symptoms under the rug—random symptoms like headaches or splitting nails, which may be coming from the same source.
As for the Google hits, I’m not sure why you’re calling them suspect. Jon Barron is one of the best alternative health writers out there, the Weston A. Price Foundation has a huge following, PaleoHacks is perhaps the best forum on paleo (which is a diet and lifestyle with a massive following), and the other link is a blog that I’ve seen cited a bunch of times in paleo circles as being someone who is less likely than average to fall for various forms of silliness.
Is this enough evidence to suggest you should read the links and take them seriously? No idea. They have a lot of links within them though. My goal was to as quickly as possible find some articles that put the conditions for ‘tab explosion’ in place in a way I thought would be beneficial. Generally when conventional medicine doesn’t have the answer, the best place to look is where people are talking about paleo. Even stereotypically non-paleo things like raw vegan juicing, such as the Gerson Diet, will come up in paleo circles—quite simply because it seems to work.
I recommend looking into low dose naltrexone. Cheap, safe, and with reported success for fibromyalgia (I haven’t looked into that use in particular). Generally appropriate for pain issues, as it is an opioid receptor antagonist with over night use modeled (and perhaps verified) as upregulating opioid receptors, and thereby pain relief, during the day. I believe D-Phenylalanine limits breakdown of opioids, and would be another cheap, safe, and effective addition to this treatment.
Also, the stimulation of gnrh release is likely generally helpful in people past 30.
I have glanced at the abstract, and the study appears to be deeply flawed. They see significant self-reported pain reduction in about 30% of the patients vs 20% for placebo. Whoa, big deal. What are the odds that another study would replicate these results? Moreover, they did not compare it with the mainline painkillers like acetaminophen or ibuprofen, or anything else cheap currently on the market, or with the classic fibro drugs, like pregabalin. To sum up, there is zero reason to try it specifically, except maybe as one of the many random things to try in desperation.
They see significant self-reported pain reduction in about 30% of the patients vs 20% for placebo.
That’s not how I read the abstract. It’s not % of patients, but % of pain reduction, whatever that means. I assume they’re referring to some self reported numeric pain scale.
The percentage of responders for “significant pain reduction” was 32% naltrexone vs 11% placebo , which strikes me as significant. If I had serious pain, and someone offered me a “widely available, inexpensive, safe, and well-tolerated” treatment with a 30% chance of “significant pain reduction” I’d be all over it. Your mileage may vary.
To sum up, there is zero reason to try it specifically, except maybe as one of the many random things to try in desperation.
Really? “Zero reason”? So you predict equal efficacy as a random treatment, such as spinning around and squawking like a chicken?
Plenty of reasons. You don’t have to like them or know of them. I wasn’t attempting or claiming to prove anything, just trying to point you to some information I thought would be helpful. I hope she finds something.
A friend of mine suffers from debilitating effects of fibromyalgia, to the degree that she had to quit her job. She has tried all possible conventional and alternative medicine, with little success. She would certainly be prepared to pay $5000 or more for a near-certain relief, but not for yet another literature search of undetermined benefit. I’m guessing she is not the target audience for MetaMed?
Well, according to their FAQ, they offer a trial service. So your friend would not have to continue to a larger report if the trial seemed to be indicating low benefits of further research.
http://metamed.com/faqs
And they also offer Financial aid—There is almost no information about this posted, other than that it exists. I guess you would have to call to determine more about how it worked. If your friend did qualify, that would be a substantial boon:
http://metamed.com/financial-aid
And it looks like overall there are at least three tiers of potential research:
http://metamed.com/personalized-research-for-individuals
And here are examples of reports at each tier:
http://metamed.com/static/Meta_Sleep.pdf (Standard)
http://metamed.com/static/Meta_H_Pylori.pdf (Plus)
http://metamed.com/static/Meta_Gout.pdf (Concierge)
Hopefully that information will help with deciding whether or not to contact them for more information.
Those results do not impress me as to the value of their research. There is nothing there that isn’t covered by Up-to-Date (http://www.uptodate.com/home) and every hospital I’ve done stats work for (several, all over the country both community and academic) has provided their physicians with up to date access.
Your best bet (apparently) would be simply asking your physician for the up-to-date report for your diagnosis. If your physician does not have up-to-date access, get a referral to the nearest academic center.
I’m unsure why I’ve been voted down here- if shminux’s friend wants a version of a report similar in quality to what metamed can provide she can ask her physician if the physician has up-to-date (or an other research aggregator) access. If the physician doesn’t, its potentially a measure of quality (which can otherwise be hard to judge), and she should get a referral to an academic medical center, which will definitely have something like up-to-date available. This seems to me like decently practical advice for those who have insurance, but don’t have the money for metamed. I’m still relatively new so I’m requesting explicit feedback to improve the quality of my posts.
Edited to Add: According to the company, > 90% of American academic hospitals already have subscribed to Up-to-Date, so getting a referral to an academic center has a great chance of getting you to someone with already-paid-for-access to this sort of report.
I’m glad you linked competition, so we can compare similar industries for reference (I asked a very similar thing about Watson.) One item that stood out on their site:
http://www.uptodate.com/home/editorial
And I was also able to find their methods for that grading as well, in case anyone wants to compare Meta Research Methods across Meta Research Organizations:
http://www.uptodate.com/home/grading-guide
Sleep apnea seems like something regular doctors should be able to figure out, and I know gout has at least been known for a long time. Are these meant to be examples of what the reports look like more than examples of how Metamed can find obscure treatments? $5000 seems a bit much for someone to be told ‘get checked for sleep apnea and lose weight’.
If she’s tried all possible conventional and alternative medicine, MetaMed will not help. If she missed something (1) obscure but promising, (2) cutting edge and promising, or (3) unique about her particular body that makes an unusual treatment promising; MetaMed might be able to help.
So, if $5000 is what certain relief is worth to her, MetaMed isn’t for her. If certain relief is worth $10000 to her, she should estimate how likely it is that paid, reasonably savvy researchers can find something she’s missed; and go for it if she feels it’s over 50% likely.
No, it’s much worse than that: “how likely it is that paid, reasonably savvy researchers can find something she’s missed” AND it has a near certainty of helping. Current prior: nothing has helped so far, so the odds of something she missed ended up being useful is pretty low. If the estimate of helpfulness is, say, 1% (that’s pretty optimistic), and the odds that MetaMed will find something new is 50%, then certain relief has to be worth $100k.
You meant $1 mil, right?
Right, sorry.
So about what do you think it IS worth? FYI, I think, based on experience with people whom have tried everything, that a 1% chance of finding something is unrealistically low. 20% with the first $5K and a further 30% with the next 35K would fit my past experience.
Define tried everything? Your prior is that there is a 1⁄5 chance a handful of researchers can find something helpful in 24 hours that isn’t listed in something like an Up-To-Date report on the diagnosis (a decent definition of ‘everything’)?
Does Metamed do patient tracking to see if their recommendations lead to relief? Or do they deliver a report and move on?
From the body of the main post (source):
Granted, I know very little about Up-To-Date, but I would be surprised if they completely eliminated that 17-year lag, especially in the more obscure conditions. They do, after all, have to cover all the conditions, and their return on investment is obviously going to be much higher on common conditions than on obscure ones. In fact, if they put out a fantastically detailed report on Stage III Boneitis (fictional) and nobody suffers a case that year, they’ve wasted their money. I strongly suspect Up-To-Date is aware of this, though I obviously have no way of knowing whether it affects their decisions.
MetaMed’s offer is, as far as I understand it, “pay us 5k and we’ll eliminate the 17-year lag for your particular case”. This lets them plausibly offer value that Up-To-Date can’t, in some cases.
Disclaimer: I am not associated with MetaMed, but I do think they’re cool.
Have you actually read the metamed sample reports/what do you think metamed actually does? As far as I can tell, their core product is to have a team of medical and phd students do a literature search for about 1 working day (compare to Up-to-date, where actual researchers in various fields write the reports and clinicians edit the treatment plans). This seems highly unlikely to move that 17 year lag even a little bit.
I have no horse in this race, but I have worked as a statistician for hospital researchers and for health insurance companies. I just happen to think metamed’s boosters here are dramatically underestimating the availability of evidence-based-medicine literature surveys in the clinical hospital setting.
This assumes she’s good at sifting through the massive expanse of information available, and good at implementing the suggestions therein. These are two extremely questionable assumptions. Knowing nothing about her except that she has severe fibromyalgia and that she’s the friend of a frequent poster on LW—two factors that hardly seem very relevant, and I’d put the likelihood of those two assumptions holding up to be very low. Quite bluntly, most people have no idea what’s really out there. The Internet is a vast space.
No, because -$100k is much more than 20 times worse than -$5k.
Saying 1% is extremely optimistic… about the quality and competence of the medical profession as encountered by average people with mildly unusual conditions.
That assumes they find only one thing that she hasn’t tried. I have a sister with fibro and some cursory googling on my part suggests that there are so many theories out about what’s wrong and what can bring relief that it’s difficult to believe that a systematic search by good researchers will only turn up a single thing that she hasn’t tried. That said, you’re right that 1% helpfulness is probably pretty optimistic.
All possible conventional and alternative medicine? I doubt it. This is a mind-destroying sentence if I ever saw one. I’d suggest re-wording it to “she’s tried a ton of different approaches both from conventional and alternative medicine”.
First thing to be said: Fibromyalgia is one of those health issues where there are no widely adopted hypotheses for the base mechanism at work. This means, quite simply, that there is little hope for targeting it specifically. It’s not a case where e.g. your lips are chapped and your knuckles are splitting, and one of the first places you look is hydration—more water, more trace minerals, etc. Instead it’s a health issue where you have nothing to target, and your only real hope is to do whatever you can to improve your general health, and hope whatever the yet-to-be-discovered underlying cause is taken out by fortunate accident.
Look to the other symptoms. What other symptoms does she have? It doesn’t matter whether they’re considered to be related. Constipation, headaches, splitting nails, PMS, dry skin, cold extremities, dandruff, frequent colds, dizziness upon standing too quickly, acne… anything at all. Note it, target it, fix it. Keep doing this for years. Make a checklist. Anything to be considered a symptom. Notice it, treat it, move on. Do this for a long enough time, and either the fibromyalgia will go away or get better, or it won’t. But at least you tried, and believe me: Her life will be better either way. Well, unless she doesn’t like hard work.
Potential leads I found through a few brief Google searches:
http://www.jonbarron.org/article/fibromyalgia-goes-pharmaceutical
http://evolutionarypsychiatry.blogspot.com/2012/02/magnesium-deficiency-and-fibromyalgia.html
http://www.westonaprice.org/miscellaneous/fibromyalgia
http://paleohacks.com/questions/107562/fibromyalgia-can-this-paleo-diet-help-me-with-fibromyalgia#axzz2Mjjvmzq6
http://paleohacks.com/questions/133865/what-are-the-causes-of-fibromyalgia#axzz2Mjjvmzq6
http://paleohacks.com/questions/1990/paleo-and-fibromyalgia#axzz2Mjjvmzq6
Good luck.
Not sure why the parent is upvoted so much. Trivial and rather useless advice, some platitudes, a few rather suspect google hits (paleohacks? really?), and a veiled insult “unless she doesn’t like hard work”.
I’m surprised as well. I expected to be downvoted to −2 or so pretty quickly, and stay around there.
As for your disagreements, I should stress that what I said is perhaps the absolute most important thing for the average person with a health issue like that to hear. All too many people get hung up on trying to target the problem specifically, when they’re dealing with an issue where doing so is not practical. Day after day, they ask, “What causes fibromyalgia? What are the new treatments suggested for it?” They remain fixated on these questions, while they sweep all sorts of other symptoms under the rug—random symptoms like headaches or splitting nails, which may be coming from the same source.
As for the Google hits, I’m not sure why you’re calling them suspect. Jon Barron is one of the best alternative health writers out there, the Weston A. Price Foundation has a huge following, PaleoHacks is perhaps the best forum on paleo (which is a diet and lifestyle with a massive following), and the other link is a blog that I’ve seen cited a bunch of times in paleo circles as being someone who is less likely than average to fall for various forms of silliness.
Is this enough evidence to suggest you should read the links and take them seriously? No idea. They have a lot of links within them though. My goal was to as quickly as possible find some articles that put the conditions for ‘tab explosion’ in place in a way I thought would be beneficial. Generally when conventional medicine doesn’t have the answer, the best place to look is where people are talking about paleo. Even stereotypically non-paleo things like raw vegan juicing, such as the Gerson Diet, will come up in paleo circles—quite simply because it seems to work.
I recommend looking into low dose naltrexone. Cheap, safe, and with reported success for fibromyalgia (I haven’t looked into that use in particular). Generally appropriate for pain issues, as it is an opioid receptor antagonist with over night use modeled (and perhaps verified) as upregulating opioid receptors, and thereby pain relief, during the day. I believe D-Phenylalanine limits breakdown of opioids, and would be another cheap, safe, and effective addition to this treatment.
Also, the stimulation of gnrh release is likely generally helpful in people past 30.
Recent small study out of Stanford on LDN for Fibromyalgia: http://www.ncbi.nlm.nih.gov/pubmed/23359310
If you’re interested, message me and I’ll send you where I get it cheap through a compounding pharmacy in NYC.
I have glanced at the abstract, and the study appears to be deeply flawed. They see significant self-reported pain reduction in about 30% of the patients vs 20% for placebo. Whoa, big deal. What are the odds that another study would replicate these results? Moreover, they did not compare it with the mainline painkillers like acetaminophen or ibuprofen, or anything else cheap currently on the market, or with the classic fibro drugs, like pregabalin. To sum up, there is zero reason to try it specifically, except maybe as one of the many random things to try in desperation.
That’s not how I read the abstract. It’s not % of patients, but % of pain reduction, whatever that means. I assume they’re referring to some self reported numeric pain scale.
The percentage of responders for “significant pain reduction” was 32% naltrexone vs 11% placebo , which strikes me as significant. If I had serious pain, and someone offered me a “widely available, inexpensive, safe, and well-tolerated” treatment with a 30% chance of “significant pain reduction” I’d be all over it. Your mileage may vary.
Really? “Zero reason”? So you predict equal efficacy as a random treatment, such as spinning around and squawking like a chicken?
Plenty of reasons. You don’t have to like them or know of them. I wasn’t attempting or claiming to prove anything, just trying to point you to some information I thought would be helpful. I hope she finds something.
I’ve read that some of the pain in fibromyalgia typically comes from trigger points; has she researched those?
If you haven’t done the search yet (in the manner MetaMed would do a search), how can you guarantee you’ll find something before you do the search? :)