Why MEpedia is flawed and potentially harmful to advocacy

[Gingergrrl]

I posted more out of confusion and never heard of MEpedia before this thread. Was trying to understand if it was aimed at patients or doctors or who the target audience was or how someone would even know to look for it? I don't understand what you mean re: editing it? If I disagreed with something in it, how would I edit someone else's research or work? Is this even possible? Sorry if this is a stupid question!

ETA: I know info that my own ME/CFS or MCAS doctors have told me but I'd never publicly write it without their permission.

 

[A.B.]

As for all of this editorial feedback – join the project. Help shape it.

I don't want to spend energy on something that may just embarass patients when they ask to be taken seriously.

If you don't believe me, just ask health care workers or researchers. We already have three in this thread, voicing negative opinions about indiscriminate promotion of poorly supported treatments.

A treatment section should be curated by people with some scientific training. If that's not possible, it should simply take material produced by some other party.

The Mendus study you are referring to doesn't seem to have blinding, wants to study cocoa for its antioxidant effects without measuring oxidative stress in patients, and probably has a few other problems. The other study on cocoa involved ten people, and there seems to be a conflict of interst involving Nestle.

 

[msf]

I actually raised the opposite issue when it was launched: I asked whether it was possible that the site would have a bias towards whatever group (psych, autoimmune, infectious, whatever) made up most of its editors. Now people are complaining about the opposite problem.

I myself never use MEpedia. I find out stuff about ME one of four ways: by seeing an ME physician, from talks by ME physicians on Youtube, through Phoenix Rising and Health Rising, and through Pubmed (which I use to check the information I gain from the first three sources). I find the debates on here about certain treatments much more useful than a short entry in an encyclopedia. I think the question is, what sources are available for those who do not want, or are not able to go through Pubmed or long threads on PR to get answers? Some people seem to be calling for a sort of WebMD for ME, which I think would be fine if there was more consensus amongst the medical community as to the causes and treatments available for ME.

In lieu of that, perhaps MEpedia is the best option available. Also, I am not sure how exactly it is supposed to hurt advocacy - could someone explain this to me? I think it is far more likely to hurt patients directly, through them trying some treatment that hasn´t been properly debunked by MEpedia.

 

[msf]

I think only stupid people would use the apparent credulity of a patient population as an excuse to ignore their illness, but then there are a lot of stupid people out there, even in the world of medicine (and especially in the world of psychiatry).

 

[MEPatient345]

It is sad that people wasted so much time on Wikipedia! Foolish, shortsighted people. They should have spent that time complaining about Wikipedia somewhere else!

 

[msf]

I posted more out of confusion and never heard of MEpedia before this thread. Was trying to understand if it was aimed at patients or doctors or who the target audience was or how someone would even know to look for it? I don't understand what you mean re: editing it? If I disagreed with something in it, how would I edit someone else's research or work? Is this even possible? Sorry if this is a stupid question!

ETA: I know info that my own ME/CFS or MCAS doctors have told me but I'd never publicly write it without their permission.

It´s not that ME is caused by goblins, is it?

 

[MEPatient345]

I posted more out of confusion and never heard of MEpedia before this thread. Was trying to understand if it was aimed at patients or doctors or who the target audience was or how someone would even know to look for it? I don't understand what you mean re: editing it? If I disagreed with something in it, how would I edit someone else's research or work? Is this even possible? Sorry if this is a stupid question!

ETA: I know info that my own ME/CFS or MCAS doctors have told me but I'd never publicly write it without their permission.

@Gingergrrl We are going to get together here on Monday at 10am ET to do a little edit-a-thon so people can learn about MEPedia and how to edit. If you saw something you thought was wrong on a page, yes, you could edit it, and also use the "talk" side of the page to discuss with other editors. Join us on Monday! Also, have a look at MEPedia and browse around to get a feel for how it works.

 

[Valentijn]

I think the issue isn't so much that unproven and/or ridiculous treatments are listed, but that there's no clear distinction between such treatments and the actual scientific content included. If a non-patient comes to the site looking for the scientific content, but also sees a bunch of quackery, they are not going to trust that the scientific content is legitimate.

The real concern is that low standards for some sections will drag down the reputability and impact of the very important parts of the site. My understanding is that @A.B.'s concerns are to protect the integrity of the site as a whole, not to criticize the whole of it. And I agree that something should be done beyond fixing the more speculative treatment pages, because even seeing those listed as "potential treatments" devalues the more plausible treatments on the list.

Evidence-based treatments don't have to be limited to what the FDA has approved for ME, or even what has been successfully trialed for ME. If it's been approved, or research has shown it to work for the same symptoms, it should be plausible enough to qualify as an evidence-based treatment.

I also think that allowing the masses to rule the wiki pages is a mistake. It's a great way to start wiki wars, which will consist of endless bickering, and not result in any sort of consensus. When it comes to ridiculous treatments, the people who believe in them can be very aggressive in both promoting and defending them. And any attempt to defer to science is usually ignored, with the ultimate conclusion that science is inferior to personal anecdotes and wild theories.

To arbitrate disagreements, especially over speculative treatment pages, it is going to be necessary to have a procedure in place, and a small group of people to enact that procedure. This should not be a group which "fairly" represents all sides of the woo-versus-science debate, but a group which understands and respects scientific principles, and can accurately summarize the relevant research.

So I have a few recommendations:

1. Put evidence-based treatments on a separate list from non-evidence-based treatments.
2. Mandate that evidence-based sources trump other sources.
3. Mandate that speculative pages must be very clear about the lack of an evidence base.
4. Fix the current treatment pages to accord with these requirements.
5. Determine a small group of people to arbitrate disputed pages.

 

[Valentijn]

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.

Here is where I disagree with you somewhat.

While there is no evidence for the efficacy of IVIG and antivirals for treatment of ME in general, there is plenty of evidence available regarding using antivirals to treat viral infections. This is relevant for some individual ME patients who are known to have problematic chronic or recurring infections.

So such a page would warrant a warning at the top that antiviral treatment is not applicable simply due to being diagnosed with ME. But there is still a scientific evidence base which is probably worth discussing as a possible aspect of immune dysfunction which patients might experience.

 

[Hip]

I think the threshold should be the very highest in keeping with what is called SBM or science based medicine, which goes beyond EBM.

In which case, the only treatments you could include on MEpedia would be CBT and GET, as these are more or less the only ME/CFS treatments that have this highest level of evidence that you are stipulating.

CBT and GET are backed up by large scale clinical trials and review studies, and this is why they are included in the Wikipedia CFS article, whereas other treatments such as say Valcyte are not.

You have to go beyond calling a treatment credible just because there are studies included and look at each one with a critical eye.

In fact, I have been repeatedly told by experienced Wikipedia editors that editors should not look at studies with a critical eye. I was told that editors should not form their own opinions on studies.

So when I tried to explain to other editors that scientific standards in psychiatry are much lower than they are for biomedical science, and consequently that the studies on CBT and GET for ME/CFS should be taken with a pinch of salt, it fell on deaf ears, because that was considered my opinion, not an established fact.


Likewise on the Wikipedia Morgellons page, when I tried to add a small reference to a study which found evidence of Borrelia infection in the skin lesions of 24 out of 25 Morgellons's patients, other editors threw that out, because it contradicted their supposedly higher quality secondary source evidence that Morgellons is a psychosomatic condition.

 

[Valentijn]

In which case, the only treatments you could include on MEpedia would be CBT and GET, as these are more or less the only ME/CFS treatments that have this highest level of evidence that you are stipulating.

No, they don't. They claim that they do, but CBT and GET studies use very poor methodology, including discredited disease criteria, unsuitable control groups, lack of objective outcomes, inappropriate questionnaires, cherry-picked results, deviations from protocols, small sample sizes, unsupported statements presented as fact, etc etc.

It should be pretty easy to make these flaws apparent in a Wiki entry. Though other topics also only involving imperfect research should be present in some form as well. The tricky bit is to make sure that the flaws are clearly displayed, positive spin from the research paper itself is examined, and positive spin is not applied by the Wiki editors.

A major problem I see right now is that some of the flimsy research for implausible "treatments" is being over-sold, when it should be labeled as weak (or very weak) from the outset.

 

[Hip]

No, they don't. They claim that they do, but CBT and GET studies use very poor methodology, including discredited disease criteria, unsuitable control groups, lack of objective outcomes, inappropriate questionnaires, cherry-picked results, deviations from protocols, small sample sizes, unsupported statements presented as fact, etc etc.

Of course we know that, but on Wikipedia medical, what is admitted as scientific truth is almost a blind mechanical process: if you have a secondary source from a MEDLINE-indexed journal, that is considered the highest level of evidence.

Your own personal opinion as to quality of those secondary sources is irrelevant, as far as other Wikipedia editors are concerned. As an editor of Wikipedia medical, you are not there to express your own view or take on things, but to represent the general view and consensus of the medical community. Since much of the consensus is that ME/CFS is a psychosomatic condition, that is the view you are obliged to represent.

It should be pretty easy to make these flaws apparent in a Wiki entry.

Good luck with that! Try editing the Wikipedia CFS page to criticize or get rid of CBT and GET, and see how far you get.

There is also the Wikipedia Controversies related to chronic fatigue syndrome page, where you will find some PACE trial criticism, but that criticism can only come from referenced sources.

 

[msf]

Likewise on the Wikipedia Morgellons page, when I tried to add a small reference to a study which found evidence of Borrelia infection in the skin lesions of 24 out of 25 Morgellons's patients, other editors threw that out, because it contradicted their supposedly higher quality secondary source evidence that Morgellons is a psychosomatic condition.

I think that, along with ME, Morgellons may have attracted some of the stupidest and most easily confused medical types around.

Edit: http://www.ncbi.nlm.nih.gov/pubmed/27269255

See what I mean?

 

[Valentijn]

Of course we know that, but on Wikipedia medical, what is admitted as scientific truth is almost a blind mechanical process: if you have a secondary source from a MEDLINE-indexed journal, that is considered the highest level of evidence.

Good luck with that! Try editing the Wikipedia CFS page to criticize or get rid of CBT and GET, and see how far you get.

Yes, these are flaws which are inherent in other wikis. They suffer from a complete deference to published authority, with no allowance for basic rational scrutiny regarding the quality of that research (unless a bigger authority has done it). Hopefully we can learn from their problems and avoid them in the ME wikipedia.

But the solution is not to abandon science or even evidence-based research. It's simply necessary to be rigorous and honest about the quality of the evidence available.

 

[Hip]

I think that, along with ME, Morgellons may have attracted some of the stupidest and most easily confused medical types around.

To me it just seems that the psychosomatic brigade will grab hold of any disease they can, and claim it is psychosomatic by default, until such time as biomedical scientists can prove otherwise. That's almost the business model of these psychosomatic psychiatrists.

 

[Hip]

Put evidence-based treatments on a separate list from non-evidence-based treatments.

I do like your above idea.

Another similar classification scheme would be to list major treatments that have the proven ability to make major improvements or bring full remission to ME/CFS (eg: rituximab, Ampligen, Valcyte) separately to minor treatments, that only make very modest improvements to symptoms (eg: L-carnitine, fish oil, low dose hydrocortisone).

 

[Undisclosed]

I think the one of the problems I have is with the use of the word 'treatment'. Many of the 'treatments' mentioned are not treating ME but treating specific symptoms or providing symptom relief that may or may not be related to the ME itself.

For example, treatments for Cancer include -- radiation therapy, chemotherapy, and/or surgery. These treatments target the cancer itself. People with cancer can experience a lot of pain. Taking either pharmaceutical pain killers or using alternative pain therapies is not treating the cancer, it is treating the pain caused by the cancer -- treating an underlying symptom. One wouldn't write on a cancer related website that a 'potential treatment' for Cancer is pain killers.

It's very confusing reading about all the many 'potential treatments' for ME. Personally, it's a lot less confusing when symptom relief vs treatments targeted at the disease itself are separated out. Is eating dark chocolate meant to treat ME or is chocolate effective related to some kind of symptom relief? Even on the MEpedia -- within the category of 'Potential Treatments' when you click on 'Cocoa' the first sentence is 'Cocoa (in the form of dark chocolate) may improve the symptoms of Chronic Fatigue Syndrome. [1]' 'May improve symptoms' is a lot different than a 'potential treatment'. I think it would be less confusing if the categories were better defined.

It's a great idea to have many people editing the MEpedia but I still think those that are in charge of it should provide distinctive categories related to treatment, symptom relief, evidenced-based treatment vs dubious treatments etc. The MEpedia will always be way way better than the Wikipedia page on CFS because it has been hijacked by a bunch of agenda-driven morons. MEpedia is still young and a work in progress. There is always the risk that the MEpedia might get hijacked by LPers, etc. We need to be careful that we don't let that happen.

 

[Hip]

For example, treatments for Cancer include -- radiation therapy, chemotherapy, and/or surgery. These treatments target the cancer itself. People with cancer can experience a lot of pain. Taking either pharmaceutical pain killers or using alternative pain therapies is not treating the cancer, it is treating the pain caused by the cancer -- treating an underlying symptom. One wouldn't write on a cancer related website that a 'potential treatment' for Cancer is pain killers.

I understand the this idea, and it's quite a good one, but there are some minor problems, because ME/CFS is not really as clearcut as cancer or other diseases where there are known physical abnormalities in the body.

ME/CFS is only defined by symptoms; the underlying pathological mechanisms and cause of ME/CFS is not at present known, although of course many researchers believe it may be caused by infections, or by autoimmunity.

So because we don't know the cause, when a major ME/CFS treatment does work, we still gauge the treatment's efficacy by its ability to get rid of the symptoms, not by its ability to get rid of some physical factors (like a lesion, nerve damage) in the body. Although in the case of antivirals, there is often a reduction in viral load with occurs alongside the improvements in symptoms.



But I agree, there is difference between say Dr Chia's interferon treatment, which puts some ME/CFS patients into full remission for 2 to 14 months, along with a concomitant reduction in enteroviral load, and a treatment like say piracetam or modafinil, which for some people can make a significant improvement in brain fog, yet probably does not at all address the underlying pathology of ME/CFS in the way that interferon does.

If you are using antivirals, immunomodulators or autoimmunity treatments, there is the notion that you are to some degree addressing the underlying pathophysiology of ME/CFS; but for other treatments, they are more like palliatives.

 

[slysaint]

I started this thread when I first found out about MEpedia...............December last year
http://forums.phoenixrising.me/index.php?threads/mepedia.41683/
where were you all then?

 

[JenB]

So I have a few recommendations:

1. Put evidence-based treatments on a separate list from non-evidence-based treatments.
2. Mandate that evidence-based sources trump other sources.
3. Mandate that speculative pages must be very clear about the lack of an evidence base.
4. Fix the current treatment pages to accord with these requirements.
5. Determine a small group of people to arbitrate disputed pages.

Many of these prescriptions are already in place. There is already a distinction between speculative/theoretical pages and those that are not. We have a category called "medical hypotheses."

http://me-pedia.org/wiki/Methylation_cycle_hypothesis
http://me-pedia.org/wiki/Vagus_nerve_infection_hypothesis
http://me-pedia.org/wiki/Omega_3_fatty_acid_hypothesis

As for pages like "Coffee enemas," I know so many people in the community who use them regularly, it's silly not to have a page even if it is to say: "There is no evidence for the use of coffee enemas." Such a page might explain where the idea comes from and whether there is any evidence of potential risks/harm.

ALL of the sources on these pages are published scientific articles. At least all the ones that I have added. Where there is a popular write up of a study, we post it in the "Learn more" section as a link, since that is more accessible to patients. Where the sources are lower quality (e.g., case studies or uncontrolled), where possible it's listed IN the actual body of the text. What current treatment pages don't accord with these requirements? If you see that, you can simply add the warning code (we can help you) to mark a page as in need of fixing and why. For example, this LDN page definitely needs cleaning up. In particular, there should definitely not be a section on dosing, especially not the section that says "Start Low and Go Slow" since it sounds prescriptive: http://me-pedia.org/wiki/Low_dose_naltrexone when at the bottom of every page is written the disclaimer, "
The information provided at this site is not intended to diagnose or treat any illness"

I am not sure why just because folks see entries they uncomfortable with on the front page (which yes, maybe shouldn't be the first thing you see when you arrive) they assume that there's a bunch of junk information. Many of these pages are blank or say "there is no evidence..." And if there is evidence, well, then it's cited there.

I don't think it makes sense to sort treatments based on how we feel about them – and really major/minor is a way of doing that in the absence of better evidence. I don't think we should be making those kinds of qualitative judgments. I think we should be linking to research and giving people in line hooks to help evaluate that research, e.g. "in a large, double blind placebo controlled study...," "in a single uncontrolled case study." Many, many pages attempt to do this, again, at least the ones that I have written.

I started MEpedia because PR is largely inaccessible to me. There's a lot of great information here, but it takes an incredible amount of work and reading to extract it from the back and forth conversations. I get very easily dizzy and crashed from scrolling and pagination. So my personal reason for embarking on this project was to make it easier to read the top level summary and then dig deeper if you want to. I also find it incredibly helpful for finding articles I have lost. I wish it could be more helpful in that regard (and could be with more participation). I wish I could engage more in PR but my specific disabilities make that difficult.