Why MEpedia is flawed and potentially harmful to advocacy

[Hip]

One can follow the example of examine.com, a website that reviews the effectiveness of nutritional supplements. They use the following stratification of evidence:

Level of Evidence

Robust research conducted with repeated double-blind clinical trials

Multiple studies where at least two are double-blind and placebo controlled

Single double-blind study or multiple cohort studies

Uncontrolled or observational studies only

Very good idea!

 

[Hip]

"There is no known treatment for ME/CFS, because the cause is unknown".

That's something of a non sequitur, because you can have a good treatment for a disease without knowing the cause of the disease. For example, the cause of depression is an unsettled matter: there are many different biochemical theories as to the cause or causes. However, there are numerous drugs that can treat depression.

As a for instance, if someone finds melatonin helpful for sleep, then it should be listed under "Symptom, Sleep", not as a treatment for ME/CFS, which it clearly is not.

I am not sure I agree with that. The sleep abnormalities found in ME/CFS are quite specific: difficulty falling asleep and staying asleep, non-refreshing sleep, delayed sleep phase and circadian rhythm disruptions.

If melatonin or any other medication can help with those, then it is ameliorating a particular ME/CFS symptom, and thus is treating an aspect of ME/CFS.

 

[TigerLilea]

However, outside those two dozen ME/CFS doctors, it's quite possible that most medical professionals in the US may also view ME/CFS as psychosomatic. I don't really know, though, because I have not seen any surveys on doctors' opinions of ME/CFS in the US.

Unfortunately, I imagine most doctors still consider CFS to be psychosomatic and they will until it is proven otherwise.

 

[Groggy Doggy]

However, outside those two dozen ME/CFS doctors, it's quite possible that most medical professionals in the US may also view ME/CFS as psychosomatic. I don't really know, though, because I have not seen any surveys on doctors' opinions of ME/CFS in the US.

Thank you for your honest feedback. Maybe we could post a survey on MEpedia and ask the question about the cause of ME/CFS? (viral, auto-immune, bacterial, metabolic, psychosomatic, etc) followed by asking about the relationship to the ME/CFS patient (self, caregiver, friend, relative, physican (treating), physician (not treating), researcher (ME/CFS), researcher (non ME/CFS), psychologist (treating), psychologist (not treating), psychiatrist (treating), psychiatrist (treating), psychiatrist (non-treating), etc., followed by location (choose Country).
This feedback would allow us to better understand who is using MEpedia.

 

[Nielk]

If this is still in its infancy and in need of edits and changes, it should not be widely shared.

https://twitter.com/i/web/status/749547579982086144

 

[Hip]

If this is still in its infancy and in need of edits and changes, it should not be widely shared.

But that's how Wikipedia started.

 

[Nielk]

But that's how Wikipedia started.

We are talking about the lives of 17 million patients worldwide. I think getting it RIGHT should be the priority.

 

[Hip]

We are talking about the lives of 17 million patients worldwide. I think getting it RIGHT should be the priority.

And Wikipedia doesn't have medical articles?

 

[Skippa]

If this is still in its infancy and in need of edits and changes, it should not be widely shared.

https://twitter.com/i/web/status/749547579982086144

Ouch.

And press sees "shove coffee where the sun don't shine new age hippy patients find excuse for getting kinky in their false illness beliefs".

 

[msf]

I'm confused what this means or how it relates to my questions? I was asking my question b/c I was confused how hundreds of people could all go in and edit something b/c then people might make an edit that the founders of the wikipedia site disagree with or two people might make edits that contradict each other, etc. It would seem like an endless free-for-all.

This seems similar that on PR I can only edit my own posts but I cannot go in and edit another users posts. I really was asking a legitimate, sincere question b/c I had not heard of such a thing before (the concept of me as a random person going in and editing someone else's post, blog, writings etc) or whatever it would be called?

I know ME is not caused by goblins and that it has a very serious cause and therefore needs very serious treatments (which is why I was questioning something like writing about cocoa, etc, as a treatment.)

I definitely do not know anything about wikipedia to add to this thread in a constructive way but do want to clarify that I was never making light of what ME is caused by, or should be treated by, (and my comments were actually the opposite). Some treatments can be dangerous even if they seem benign (just as an example, I got pulmonary edema from one liter of IV saline and got severe akathesia from Valcyte) and then two years into this illness when I developed MCAS, some of the treatments listed could give me anaphylaxis or potentially kill me so I was trying to say that a medical disclaimer seemed appropriate to add.

Am thinking about backing out of this thread now and leaving it to the experts who know more about wikipedia, etc.

Sorry, it was just a silly joke. I can see how you may have misconstrued it as an attack on you - I will make sure I explain any jokes I make in future.

 

[MEPatient345]

I posted that soon after posting here asking for help, in an effort to get people involved. I was hoping people would help build it with some encouragement.

Can I try to explain how wikis work by giving you a use case? There are a LOT of fears here about people making huge massive judgements about ME based on seeing unproven treatments that are listed q far down in the home page clearly under the heading "alternative interventions". It is unlikely a member of the public will a) look at that page or b) if they did, come away with a conclusion of "these people are all crazy"

Wiki users often don't visit a home page. They are directed to a page which is a standalone page on a topic, read what they are looking for and click through links from that page to more detail. (Think about how often you go to a Wikipedia page from Google. Now tell me what the home page for Wikipedia looks like. See?)

On millionsmissing.org we have brief descriptions of ME under headings like "symptoms" but then for more detail, someone can click through directly to the "symptom" part of the primer page. The number of users that you can engage to that level of clicking on a secondary link on a secondary page is not super high.

So, one user flow or path for a journalist might be:

• broad overview of protests on millionsmissing.org
• high level information page on "what is ME" on millionsmissing.org
• Click through to MEPedia primer page for more detail on symptoms, takes directly to a primer page. http://me-pedia.org/wiki/Primer_for_journalists#It_is_not_tiredness
• Click through for more info on "PEM' http://me-pedia.org/wiki/Post-exertional_malaise
• click through for information on a study https://www.ncbi.nlm.nih.gov/pubmed/10209352

.. And then back and forth at that level. Maybe never going to the home page. So, when I said "used heavily as an information resource" I meant that some people may explore deeply at this level and it would be super f*ing awesome if pages linked from the primer pages especially, were built out more. Lots of these pages are already really really GREAT. Look at them.

But, the great thing about wikis, is that the user understood paradigm of wikis is -- they are works in progress. So if a user reaches a page which is incomplete, they already understand that it doesn't mean there is no information on that topic, they understand it is not completed yet. The wiki language signals that. But, the user already knows because they've encountered this before in other wikis like Wikipedia.

I hope this helps assuage some fears. I hope you all visit these pages to understand how useful they are as quite comprehensive overview pages for lots of great stuff to do with our disease -- links to studies etc. that doesn't exist all in one place elsewhere.

 

[msf]

Don't think so. All the colleagues I know who treat ME/CFS or fibromyalgia have never heard of PACE. I is just not on their radar. The clinical problem has always been there and doctors have always had to deal with it as best they can. The problem for research is nobody knows where to start because there are no biomarkers to point to something to investigate. PACEs a disaster but I don't think it has anything to do with the absence of other research. And just because some high profile people have one theory about a disease does not stop other people testing other theories. When I tested rituximab for RA everyone else thought I was nuts. But I had reason to think it might work.

Are you sure? I find that quite hard to believe, unless they are GPs who have only seen a few dozen ME patients. How could they not have heard of the trial that the NICE guidelines are based on?

I´m not sure the RA analogy is a good one, either. RA was already believed to be an autoimmune disease, wasn´t it? The analogy would be more apt if you had done a Rituximab trial in a disease that was widely believed by doctors to be psychosomatic.

 

[Skippa]

I can't knock the enthusiasm and confidence of the mepedia cause, I might just roll my sleeves up and have a go!

Hey, there's some really good feedback in this thread that should prove invaluable, I reckon.

 

[MEPatient345]

@Skippa.. Wonderful! Thank you.

It's really discouraging to me to have people pull up tweets about MEPedia and imply suspicion and bad intentions. I am working really hard every day from my bed to make something worthwhile. I have a lot of experience in user experience design and digital strategy, so these decisions and recommendations are not coming from a place of ignorance. I also work through a democratic process on millionsmissing with a team of volunteers, most of whom are known by name in the community. Anyone can get involved and be part of this process if they show up and work at it and have something to offer. It's not a single person making decisions for the entire community.

I wish people would actually look at MEPedia and try to understand how it works before denigrating it. Most of the comments here show a total lack of understanding of a wiki. And I actually think some of us who promote it, including me, made some inaccurate comments at the beginning saying it will only be valuable when it's more complete. It's already valuable in its current state. To test out this hypothesis, go to alternate sources of information like the pages here on PhoenixRising (http://phoenixrising.me/mecfs-basics); or to the IACFSME pages, or to the PDF of the IOM report. None have the functionality to allow the broadness and depth of information access that a tool like a wiki allows, and that MEPedia is starting to fulfill on.

 

[MEPatient345]

Also, @Skippa, at 10am ET which is 3pm London time, there will be a chat here where we all learn about editing together, if you'd like to join.

 

[ScottTriGuy]

@Silencio

Keep up the good work.

You have a lot of patience.

Thank you for sharing your skills and wisdom with the ME community.

 

[Valentijn]

It's really discouraging to me to have people pull up tweets about MEPedia and imply suspicion and bad intentions.

No one is suggesting bad intentions. But there does seem to be an aim for MEAction to use ME-pedia as an informational source for the media, etc. In which case, it would certainly be preferable for the entire ME-pedia site to be looking very reputable.

 

[MEPatient345]

@Valentijn
Oh yes, they are. Posting an old tweet like "aha.. See they did say that!"

Please try to follow my use case and explanation above for what MEAction is using MEPedia for. I am the only person who has mentioned how it will be used. This is how it will be used.

I won't be posting here anymore. I have work to do.

 

[A.B.]

MEPedia has a better chance to become popular if it offers few articles of outstanding quality. This would also be best for advocacy. People are selective and will refer to the source of information they consider the best (for a certain purpose at least). IF that source happens to be MEPedia it will quickly gain visibility.

So this is yet another reason to choose quality.

PS: As example, Tuller got massive traffic with a single outstanding article.

 

[Valentijn]

Posting an old tweet like "aha.. See they did say that!"

So facts are bad, and if it's facts which contradict something you've said, those facts are attacking you? Someone clarified a confusing situation. It wasn't a "gotcha", it was highly relevant information.

If things have changed for MEAction since then, why is it a problem to simply say so? Similarly, if you had a mis-impression regarding MEAction's intention or past statements regarding ME-pedia, isn't it simple to admit it and just move on? No one expects anyone to be perfect.

Viewing it as an attack is senseless and unproductive.