Cost Benefit Analysis of Ampligen, GcMaf+Nexavir, Mold Avoidance, LDN

I just drafted a simple cost benefit analysis of several treatments being widely discussed on ME/CFS forums: ampligen, gcmaf+nexavir, mold avoidance, and LDN. I subtracted the net present value of all possible treatment costs from the net present value of all possible treatment benefits.

https://spreadsheets5.google.com/ccc?pli=1&hl=en&key=t3pkRCSx_aLzuu0mrEBkEWQ&hl=en#gid=0

The spreadsheet is publicly viewable but if you want to tweak any numbers, you have to copy and paste it to another spreadsheet first. The references I used are highlighted in yellow.

I couldn't find data for everything of course (response rates for ampligen vary from 33% all the way to 80%, and there is virtually no data on the ability to return to work so those were just drummed up using common sense). The data for GcMaf was derived from this public spreadsheet with contributions from 24 patients so far https://spreadsheets5.google.com/cc...ZNXEKNWzIsbWaN4iN1pWWw&hl=en&authkey=CIH8jqcC
Although Kenny De Meirleir has reportedly said 85% of patients respond to GcMaf, I made the decision to stick with firsthand accounts but you can of course tweak that accordingly. Since the overall response rate for GcMaf based on the public spreadsheet is similar to the 33%-40% response rate I've most commonly heard for ampligen, I applied the same breakdown in functionality (returning to part-time work, full-time work) to both. I think using a 20% rate of going back to any level of work on either of these therapies is anywhere from fair to fairly-optimistic, but there's really no way to tell for sure.

The data for mold avoidance and LDN were pulled from curetogether.com, where 69 patients have reported doing mold avoidance and 54 patients have reported trying LDN. I extrapolated "major improvement" to ability to return to part-time work based on anecdotal reports. Whereas I have heard many patients being able to return to work with extreme mold avoidance, I have only heard of one such case out of many reports using LDN.

The most problematic issues here are the intangible costs of course. How much value do you put on just feeling better but not being able to work at all? I used $50,000 per year because that's what the US and UK have decided is a cost-effective amount to give a human being one year of quality of life. For me, it's actually lower than that because I consider not being able to break even (make enough back to cover the costs) a failure.

Also, one of the biggest arguments against doing extreme mold avoidance is difficulty, sacrifice of personal comforts, herculean effort required, and other intangible costs. Most of the people that reported results on curetogether presumably did not do "extreme" avoidance (throwing away old stuff, buying new, moving into a good location in a trailer or tent), and from my understanding the success rate from extreme avoidance is great: out of 2 dozen or so that have tried it, there have been 2-3 people that felt it wasn't worthwhile. However, since these are secondhand reports, I'm leaving that success rate out of the analysis. However, I still put down $10,000/year in intangible costs. This comprises social isolation, misery, effort required, and whatever other intangible suffering one might encounter in doing extreme mold avoidance. Again, someone that has abundant camping/wilderness experience might feel this the cost is $0 and another person that has never pitched a tent and gets nauseous at the sight of a trailer park might feel it's $50,000 a year. Plug in whatever number that is.

I did this purely out of curiosity and this is not an attempt on my part to convince anyone to do anything but just to give you another tool at your disposal to help choose between costly decisions. Make no bones about it: all of these treatments (besides LDN) are costly in one way or another, and the fact that the net present value of these options using my model are negative values reflects that.

Wow Joey....that must have taken some time to pull together. Thanks. Now if only LDN had worked for me....that seems like the easiest and cheapest way to go!

Hey Joey,

This is very interesting and, as dsdmom mentioned, a lot of work!

One thing that is yet to be reflected in the data of the GcMAF spreadsheet is that it takes a long time to see the benefits and only a couple of those reporting have been taking it long enough to be in the likely category to notice symptomatic improvement.

This is especially so since so few of us are in the "high responder" group. KDM told me that it would likely take a long time for me to see good response--say 35 shots or so. Like many, I have many less than that under my belt. In my case 10.

So it might be useful to look at the data again later when more have been taking GcMAF long enough to get a response...or not!

Thanks!
Sushi

Hey Sushi,

What you said not only applies to GcMaf but every other treatment as well. This is a template and anyone can copy and paste the formulas and enter whatever numbers they find reasonable.

For my own purposes I'll keep updating this spreadsheet as the GcMaf spreadsheet changes.

Regarding the amount of the work..it's a wash since I find stuff like this fun

Sorry have always been hopeless at maths, figures, data etc.. How do you get the net present value of $216.000, is this something with it being done over five years?

When you talk about a monetary value of $50,000, do you mean that it would only be worth doing a treatment if it costs $50,000 or less, or do you mean you need to be able to earn that amount annually? Sorry said I was hopeless....

Hey Annie,

Exactly. The NPV is based on 5 years of benefits and costs.

Yes the $50,000 is the figure I applied to the intangible benefit of feeling better. People that want to use this spreadsheet can copy and paste it and enter in whatever figure applies to them. Intangible benefits (and costs) are always specific to the individual.

Thanks Mojoey, still a bit confused about the monetary value figure and what it means. Does it mean it would only be worth doing a treatment if it costs $50.000 or less or that you need to be able to earn that amount annually?

In this model it means that if $50,000 is greater than your annual treatment-related costs (again, both tangible and intangible costs), then it would be worth doing for you, even if you make nothing in income for 5 years.

Of course, the benefit of feeling better may decrease with time (called the law of diminishing returns...you get diminishing satisfaction from the same thing over time), in which case you would need to adjust formula used for the NPV of that outcome. Instead of

=NPV(5%, $50000, $50000, $50000, $50000, $50000)

you might for example use

=NPV(5%, $50000, $40000, $30000, $20000, $10000)

Right, thanks Mojoey, clearer now.

Hope you find it mildly useful, and if not, at least fun to play around with