Why MEpedia is flawed and potentially harmful to advocacy

[GreyOwl]

I don't think secondary review articles matter. Good primary sources are the only things that count. I rather suspect that it seems that secondary sources are required simply because those primary sources that are not quoted are probably not worth mentioning anyway.. There are actually all sorts of reviews in ME/CFS suggesting that things work when the primary evidence is not convincing. The problem is shortage of good primary scientific sources.

It can take more than 10 years for a primary source to be cited in a secondary source.

 

[Hutan]

Perhaps the section should be called "potential symptomatic relief/treatments" or require it to click through so they are all not named on the homepage to prevent more conservative medics etc not being put off by all of them on the homepage?

@Yogi's idea that the homepage just has mostly headings is a good one. So, there is a 'Potential Treatments' heading, perhaps with up to three key possible treatments like rituximab and antivirals and 'others'.

And @olliec seems to be happy with a move in that direction

This point you make about the home page is one I strongly agree with and it's something we've struggled with for some time. The reason the home page is huge and link-covered was to make it easy to see which pages had yet to be created (the red links) and yet as hundreds of pages have now been created there is less need for that. Initially MEpedia's home page was laid out to assist contributors, but now the pages are becoming more useful and trustworthy (not all, for sure) it must mature to better suit the needs of non-contributor visitors. One option that's been discussed is to follow a model a bit more like Wikipedia's home page and include higher-level sections highlighting certain content, which for MEpedia might include a section of pages on topical subjects (PACE, Ronald Davis, Robert Naviaux, for example) and then to make the various primers much more prominent, so that actually the home page is designed to guide the various types of visitor to the right place (researchers, doctors, journalists, politicians etc).

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If we are going to have pages on obscure (and perhaps flaky) treatments, then let's not refer to them specifically on the front page.

Perhaps the home page streamlining deserves to be prioritised before other work?

 

[halcyon]

we want MEpedia to be credible and reliable source of information.

You're essentially saying that strict (and arbitrary) guidelines should be enacted, such as those that exist on Wikipedia. These inflexible guidelines are the entire reason that MEpedia exists in the first place. If that's what you want we might as well delete the whole thing and just go back to being censored on Wikipedia.

The guidelines are there for a reason though, and in a perfect world it wouldn't be a problem. In a perfect world there would be copious amounts of biomedical research on ME. There wouldn't be a skewed evidence base largely made up of biased psychosocial promoting reviews. There wouldn't be biased journal editors and reviewers. But we don't live in that world.

While I respect where you're coming from, personally I don't think the general public is going to spend much time perusing MEpedia looking at the articles on treatments. Honestly the primers currently aimed at the general public, as they are written right now, make me cringe more than the article on dark chocolate.

 

[Gingergrrl]

The evidence for prescription drugs should be judged by the same criteria as non-prescription compounds. If cocoa is to be omitted for lack of quality evidence, so should IVIG or antivirals.

I need to actually read the page which I have not done yet but how could cocoa (which many with POTS or MCAS cannot even tolerate) be compared to anti-virals or IVIG? I promise to read the page before I reply any further in case I am missing something.

ETA: I have now read the main page and find it very strange in just about every category from the treatments listed, to the symptoms listed, to listing certain deceased patients but not others, to the big section on psychological treatments, etc. Who is this page aimed at?

 

[Skippa]

Agree with @Hutan although perhaps a treatments page would then have 4 groupings:

Evidence based
Potential (more evidence needed/research ongoing)
Dubious (mostly anecdotal)
Discredited (PACE goes here)

 

[adreno]

I need to actually read the page which I have not done yet but how could cocoa (which many with POTS or MCAS cannot even tolerate) be compared to anti-virals or IVIG? I promise to read the page before I reply any further in case I am missing something.

So you don't think all modalities should be judged by the same standards?

 

[Kati]

Would listing things such as some patients benefit from anti-virals, some benefit from IVIG or Rituxan, etc, be helpful as long as there are no blanket statements that there is a one size fits all type treatment?

The evidence is not there for IVIG. It is mixed for anti-viral (the latest Valcyte trial from Montoya did not demonstrate a lowering of viral titers despite patients improving cognitively) Rituxan, we will find out in 2018.

Evidence-based basically means for the most part approved by FDA as a safe and effective treatment. Passing all stages of clinical trials including safety, best evidence comes from placebo controlled double blinded clinical trial. From this evidence, scientifically approved and agreed upon guidelines develop, most of the time debated and agreed in international conferences. For instance, in rheumatoid arthritis, first line of treatment would be a disease modifying drug (DMARDS) second line would be prednisone, third line would be Rituximab (this is only an example, I am not knowledgeable about the latest guidelines for RA!)

As an aside, for those of you looking for evidence for their herbal/ vitamins/ supplements, here is a database that seems to be accepted by medical standards. I particularily like the grading system. http://3rdparty.naturalstandard.com/index-herbs.asp

 

[Skippa]

Why isn't there a section on prayer? 'Cos I bet there are more patients engaged in prayer for CFS than there are sticking coffee up their bum.

 

[Jonathan Edwards]

So it's all about being stuck between that rock and a hard place... things like PACE have made sure that there aren't scores of evidence based treatments to choose from...

CFS/fibro et al are unique in that the patients absolutely HAVE to discover supplements and off label uses for other treatments because they aren't getting any help from anywhere else.

I think there is a misconception here. Lots of other conditions have no treatment. There is no treatment for my deafness, for my mother's dementia, for my friends osteoarthritis, or for the child down the road's muscular dystrophy. But you do not find websites about these diseases full of recommendations to take supplements based on pseudoscientific arguments about things like methylation.

The lack of treatments and research has nothing to do with PACE. If you remember, when XMRV was raised virologists all over the world rushed to study it. The reason why there has been so little research is that there are have been so few leads.

 

[Gingergrrl]

So you don't think all modalities should be judged by the same standards?

I didn't say that (or at least I don't think I said that?!!) If a treatment has been proven to work then I think it should be listed whether it is a supplement or an FDA medication. I was questioning things like cocoa or wine which many patients cannot even tolerate b/c of a complete alcohol or a complete caffeine intolerance since becoming ill. If these are listed, I'd want there to be some kind of warning.

Actually I think we need some kind of medical disclaimer in general (depending on who the page is being aimed at or who is the target audience- which I am still unclear!) For example calcium channel blockers can help many but for me b/c of an auto-antibody that I have, they can be extremely dangerous. So it sounds like the page is endorsing certain treatments (whether supplements or FDA meds) that could help one group but potentially injure or kill another.

The evidence is not there for IVIG.

I thought Dr. Peterson (or Dr. Cheney?) or one of the main ME/CFS docs fully endorsed IVIG as a treatment? But I could be wrong.

 

[adreno]

I thought Dr. Peterson (or Dr. Cheney?) or one of the main ME/CFS docs fully endorsed IVIG as a treatment? But I could be wrong

Doctor's endorsements is not the same as evidence.

 

[Kati]

Why isn't there a section on prayer? 'Cos I bet there are more patients engaged in prayer for CFS than there are sticking coffee up their bum.

Meditation, mindfullness, yoga... oil pulling, getting a new boyfriend... you get deeper and deeper into philosophy and less in the realm of providing effective treatments to the patient.

Those are not treatments. They are complimentary treatments aimed at changing your outlook. Definitely not curative.

 

[Kati]

I didn't say that (or at least I don't think I said that?!!) If a treatment has been proven to work then I think it should be listed whether it is a supplement or an FDA medication. I was questioning things like cocoa or wine which many patients cannot even tolerate b/c of a complete alcohol or a complete caffeine intolerance since becoming ill. If these are listed, I'd want there to be some kind of warning.

Actually I think we need some kind of medical disclaimer in general (depending on who the page is being aimed at or who is the target audience- which I am still unclear!) For example calcium channel blockers can help many but for me b/c of an auto-antibody that I have, they can be extremely dangerous. So it sounds like the page is endorsing certain treatments (whether supplements or FDA meds) that could help one group but potentially injure or kill another.



I thought Dr. Peterson (or Dr. Cheney?) or one of the main ME/CFS docs fully endorsed IVIG as a treatment? But I could be wrong.

Dr Peterson, from what I understand uses IVIG on select patients who meet certain criterias. I do not know what these criterias are. I suspect it is one of the tool he is using amongst quite a few 'tools'- Ampligen, Valcyte, Vistide, IVIG,

Second comment I'd say is that IVIg is used for many reasons in the medical field, for instance giving immune booster to cancer patients. But in general IVIg would be given too those who have IgG subclasses deficiencies, and not specifically for ME. We know a subset of us do have IgG subclasses deficiencies.

From my understanding, IVIG for ME at large, regardless of their IgG subclasses, has not proven too helpful.

As usual more research is needed to learn more about the illness mechanism, and whether we can be grouped into subselts which would be very helpful in my opinion.

 

[Gingergrrl]

Doctor's endorsements is not the same as evidence.

But if there was a treatment (in general not IVIG per se) that our main ME/CFS docs found helped a high percentage of their patients, wouldn't that be listed vs. something like coffee enemas or eating chocolate? That's why I am confused who this page is aimed for.

 

[Gingergrrl]

@Kati I agree with you that IVIG can be used from everything from Parvo virus in the heart to neuromuscular diseases to IgG subclasses being low to autoimmune antibodies etc. but since we still don't know what ME/CFS really is or what the subgroups are, I would want the opportunity to read about it vs. some of the other things that are mentioned like meditation or complimentary treatments.

 

[Skippa]

I think there is a misconception here. Lots of other conditions have no treatment. There is no treatment for my deafness, for my mother's dementia, for my friends osteoarthritis, or for the child down the road's muscular dystrophy. But you do not find websites about these diseases full of recommendations to take supplements based on pseudoscientific arguments about things like methylation.

The lack of treatments and research has nothing to do with PACE. If you remember, when XMRV was raised virologists all over the world rushed to study it. The reason why there has been so little research is that there are have been so few leads.

Thank you, I totally accept what you are saying here, yes I get a little mixed up from time to time.

I try to play devil's advocate in order to drive myself towards a robust opinion on matters, and collecting (solid) opinions/viewpoints such as yours here is a big part of that.

So I will ditch the "rock and a hard place" saying and replace it by applying "can't see the wood for the trees" to myself.

 

[sarah darwins]

DR Peterson, from what I understands uses IVIG on select patients who meet certain criterias. I do not know what these criterias are. I suspect it is one of the tool he is using amongst quite a few 'tools'- Ampligen, Valcyte, Vistide, IVIG,

Perhaps this is an opportunity to get physicians working in the field to contribute more to the public discourse, by having an MEPedia page for, say, IVIG that outlines the approach, mentions physicians and researchers working with it, but clearly states 'Insuffficient evidence' or similar, then actively inviting people such as Peterson to contribute to the page?

There are a number of seemingly genuine, well-qualified people working with patients but rarely much in the way of information coming from them. I think we all find that frustrating.

 

[halcyon]

But if there was a treatment (in general not IVIG per se) that our main ME/CFS docs found helped a high percentage of their patients, wouldn't that be listed vs. something like coffee enemas or eating chocolate? That's why I am confused who this page is aimed for.

I assume the goal of MEpedia (as with Wikipedia) is to store encyclopedic knowledge. If well known doctor "x" gives "y" treatment to a large number of their patients (to whatever effect), that is fact, and thus could be considered encyclopedic knowledge. To state that "y" is an effective treatment, without adequate evidence, that is supposition not fact and doesn't belong in an encyclopedia. The argument comes when you try to draw the arbitrary boundaries around what constitutes adequate evidence and what doesn't. Wikipedia has very specific requirements in this area, MEpedia so far does not. I would not like to see MEpedia adopt requirements as rigid as Wikipedia because that would defeat the whole purpose.

 

[Skippa]

@Jonathan Edwards thinking about it a little more, surely PACE has affected availability of evidence based treatments here in the UK though... by pushing research in the wrong direction (psychy) or diverting funding?

 

[JenB]

This is deeply confusing. MEpedia is a reflection of the people who choose to contribute to it. It will thrive when we all pitch in. It will fail when people who are able to contribute don't. It is open source. Wikipedia existed and was pretty terrible for years before anyone on this thread had even heard of it, long before there were moderators or medical editors. It took loads of time and investment before it even became anything.

As for all of this editorial feedback – join the project. Help shape it. There are folks actively engaged in these conversations and contributing to the project. Sadly, not enough. You can't build something that doesn't exist without going out and building it. And in the process of doing that it will suck, for a very long time, until it doesn't. But hard work is the only answer. Truly. We've had far more people over the course of the project complain about the content and ask us to edit it on their behalf or critique our editorial judgment (as though there is a central authority) rather than jump in and edit themselves.

As for fasting and cancer, I am really sorry to hear about your mother, Kati. It's important to emphasize that the page is simply citing research studies on its use as an adjuvant for folks undergoing chemotherapy. These are studies published in Nature and Science. That page does NOT say that it is a treatment for ME – there have been zero studies on that. But since some people with ME do fast or try ketogenic diets, it is an *early* attempt to cite some of the research on fasting and its effects on human health. That research can't speak to what your mother's experience was. It is simply the research.

There is even more evidence for a ketogenic diet in various diseases (if not ME), which has similar physiological effects as fasting: http://me-pedia.org/wiki/Ketogenic_diet

Chocolate is there because Mendus is running a citizen science experiment, which is enough IMHO to make it relevant to the community. It increases populations of bifidobacteria, which may be low in us. (You can see the rationale for the Mendus study here: https://drive.google.com/file/d/0B3pmHE2RSVQmVm5qejFSSEtmNm8/view) Is it a potentially useful supplement? Is it totally kooky? That's not exactly for me to judge. And there isn't much evidence either way. I just add information to relevant pages when I come across it. If caffeine is bad for POTS and ergo, chocolate may be bad for POTS, then that should be added to the page. The person who complained of that omission is the best person to add and cite that important information.

I am not sure why it says "Potential treatments" on the front page There's probably a better word. "Sh** folks in our community try." And if they are trying it, then it should have a page, and that page should lay out what science does or does not exist that might support the idea that that treatment could have some value. The current arrangement does not make any attempt to rank potential treatments in a hierarchy nor does it make an judgment about whether all things are equal. These are just listed there to encourage folks to jump in and edit. I think it is worth creating pages for treatments that people in the community are trying *even if there is no evidence to support it* so that it's easy to look and find out that there isn't evidence. That is just as important as creating pages for treatments or mechanisms for which there *is* high quality evidence.

Anyway, it's strange to litigate this on PR when you are all more than welcome to come over to our editors' group and discuss these issues or better yet, go right in and edit the page. Content suggestions that we are meant to implement are unlikely to be implemented due to lack of capacity. Actual edits are *very* welcome. If you can see how MEpedia could be better, then come make it better. If you think it's a totally doomed concept, then move on and go start or contribute to something else more aligned with your values or vision.