ALS Untangled: an organisation worth emulating?

jonathan_h

jonathan_h

Established Member (Voting Rights)
Occasionally, I read other disease communities’ online fora to broaden my horizons. That’s how I came across ALSUntangled—an org likely to be of particular interest to members of this forum.

Here is how they describe themselves on their Mission & Methods page:

ALSUntangled® systematically reviews alternative and off label treatments (AOTs) to try and help patients with ALS make more informed decisions about them. The basic structure of all our reviews revolves around a “Table Of Evidence”. In this, each AOT is graded across 5 different categories: mechanistic plausibility, preclinical models, cases, trials and risks. Grades in each category range from A (best) to F (worst), with U meaning we could not find any useful disclosable evidence for the AOT in that category. Final grades are crowd-sourced across an international team of more than 100 clinicians and scientists from across 11 different countries.
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The treatments with the most interest from pwALS are prioritized for review through a voting system on their website. Once a review is completed, it’s peer-reviewed and published in an ALS journal. For an example of their reviews, check out this one on carnitine supplements or browse a list of all their completed reviews to date.

The severity of ALS and its lack of effective treatments make people desperate. Poorly-evidenced treatments and scams abound—a dynamic we’re all familiar with. I believe an ME/CFS org like this would be an invaluable resource and do much good—provided it were done this well. It must emulate the openness and non-dismissiveness with which ALSUntangled evaluates alternative treatments, however, or it won’t be a credible resource to most pwME.

It would be a huge undertaking, and I’m sure some ME-specific problems would arise (like how to find experts to grade the mechanistic plausibility of e.g. LDN when most specialists prescribe it), but if such a resource exists for the relatively small ALS community, I don’t see why one couldn’t for us too.
 
Sounds like a worthwhile project for people with ALS. It's good to see there are over 100 clinicians and scientists participating in reviewing possible treatments. I had a friend with ALS and it's a truly terrible disease.

For ME/CFS there isn't enough clinical trial research to be worth reviewing, and there's no way we could get over 100 clinicians and scientists working on such a project for us.
 
Trish said:
For ME/CFS there isn't enough clinical trial research to be worth reviewing, and there's no way we could get over 100 clinicians and scientists working on such a project for us.
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Many of the treatments ALSUntangled reviews have little to no clinical trial evidence either. The way they contextualize the lack of evidence, or the shortcomings of the available evidence, for a lay audience are still helpful in my opinion.

Your point about us not having 100 clinicians and scientists to participate is certainly true, but I don’t see why having that many would be a necessary condition of a project like this.
 
ME/CFS Skeptic said:
Haven't looked into the ALS example closely, but I think there is a big risk of presenting a medication as more plausible/promising than it really is.
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Absolutely. If you ever get around to checking out their site, I’d be interested in your opinion of how they fare on this front. I think they do quite a good job of packaging scientific skepticism in a way that patients will be receptive to.
 
Haven’t looked into it, but from what you are saying it could indeed look interesting to me. It seems they “evaluate” many of the things that are also popular in ME/CFS communities (for example Fecal Transplants) so I a priori don’t think it should be an impossible task just because too little is known about ME/CFS.

I do think however that any results would always be around the lines of “insufficient evidence”, “evidence it does nothing”, “evidence it is harmful” and only for something like Ampligen there’ll probably be something like “very weak evidence it does something small for some people”.

However, that doesn’t mean such results are meaningless. Had such a list existed for ME/CFS, maybe some of the LC trials wouldn’t be a hopeless repetition of past failures.
 
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I had a quick look at the ALSUntangled website and I like the concept but doubt it would be the best use of scarce resources trying to translate it to ME, at least at the current time.

Some elements I like:
  • the lack of credible evidence and risk for many treatments are visible at a glance; this may get people to stop-pause-think before they get carried away with hyped potential benefits
  • the reviews are basically meta-analyses using a specific format relevant for assessing clinical benefit and risk
  • the reviews are published in a peer-reviewed journal so carry more authority than for example MEpedia
  • a useful quick reference resource for doctors who are being asked by patients about these treatments
Some reasons why it would be difficult to copy for ME:
  • I haven't looked into the ALS literature but I got the impression from observing a relative's fatal encounter with this incredibly nasty disease that there were some broadly accepted mechanistic explanations. Undoubtedly there's some level of disagreement in the field but I suspect it's nothing compared to what we have in ME. For us there's a high risk of wasting a lot of time and energy arguing about what qualifies as a plausible mechanism; currently that's largely down to opinion, which vary rather a lot
  • When my relative was ill doctors were falling over themselves to do their very best by them, even though there wasn't that much they could offer (side note: doctors must feel at least as helpless faced with ALS as with ME but that doesn't stop them from doing everything they can for ALS). So I'm guessing there are more ALS clinicians and scientists able and prepared to put in the time doing the reviews. In ME we have too few competent clinicians and researchers as it is and their precious time may be better employed elsewhere, and patient advocates are also overwhelmed already
  • I'm not sure how the ALS reviewers accounted for trial quality or lack thereof. With ME that would be absolutely crucial. There are so many trials reported in peer-reviewed papers that appear to show positive results for practically everything ever tested no matter how nonsensical, including exercise, brain retraining, all sorts of supplements, diets, behavioural strategies, etc etc etc The usual 'published in peer-reviewed journal' really doesn't cut it in ME
So yes, I do like the concept and if we had the resources and if the above difficulties could be solved it would be great to have a reference resource like that. Maybe one day, maybe once we have broad agreement on the plausible mechanism thing. In the meantime I think the charities could usefully consider some general guidance for less scientifically literate pwME, similar to this:

ALSUntangled 56: “ten red flags”-things to be wary of in alternative or off-label products
 
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