Why MEpedia is flawed and potentially harmful to advocacy

[alex3619]

It seems to me that the crux of the arguments here are that three or four different audiences are intended for the wiki, one for patient information, and two or three for a wider audience. The desirable features for each audience, and that is before going into sub-audiences, clash. In trying to be all things to all people, the wiki is likely to wind up as useful as wikipedia - good for some things, hopeless for others.

My initial take is that we need three sub-wikis. A patient encyclopedia, which covers everything and gives information on the evidence. A journalist base which uses common language and links to human interest and hot topics information, including the entire story about the debunking of PACE. The third is for scientific information. Whether or not the scientific wiki will suffice for a medical audience is unclear. Evidence based claims and scientific claims have their own conflicts. All of these could be done within the same large wiki.

I remain unconvinced that talking about evidence based rankings is necessarily good. Its certainly the flavour of the last several decades, but like much of what we are discussing here it has serious flaws. There is no such thing as immutable evidence based rankings, they are rules of thumb or heuristics. For example, extremely high ranked evidence in clinical trials might come from a controlled case series, whereas a randomized controlled trial might be little better than anecdotal evidence. The issues are in the methodological details and results. Its also beyond us to properly assess such evidence, other than for very isolated cases. So when we use such rankings we need to be really clear, at least to scientific and medical audiences, that we are not discussing strict evidence rankings, but general guidelines.

 

[MEPatient345]

If anyone wants to help, we are working on a page now:
http://forums.phoenixrising.me/inde...rking-on-mitochondria-page.45729/#post-743862

 

[Sasha]

I haven't been following this thread closely but every time it surfaces in "new posts", I'm bothered by the title.

@A.B. - does the title really reflect your view? Do you consider the whole of MEpedia flawed and potentially harmful to advocacy? Or is your concern really restricted to the sections on treatments? Have your concerns been modified by the discussion?

I think that your raising the topic has led to some useful and constructive discussion but I'm concerned that the title is damaging to a project that has some strong elements and that has the potential to grow into a real community asset - and I'm concerned that it's demoralising and potentially hurtful to patients who have worked as hard as they can to produce something for the community.

Would you consider editing your title to something such as "How can we have good-quality treatment pages on MEpedia"?

 

[A.B.]

@A.B. - does the title really reflect your view? Do you consider the whole of MEpedia flawed and potentially harmful to advocacy? Or is your concern really restricted to the sections on treatments? Have your concerns been modified by the discussion?

I consider the lack of editorial guidelines to be a serious flaw.

The risk to advocacy came from the plan to "heavily use MEPedia as information resource for press and public during #millionsmissing protests". I'm being assured that this was just a big misunderstanding but I found the responses evasive, which is not a good sign. I don't want articles on chelation, coffee enemas and fasting (the contents of the "Detoxification" category) to be associated with ME/CFS. I think it's easy to see how this could negatively affect advocacy efforts.

It would be logical to sort these issues out before more work is being done. The recent contributions show no signs of editors engaging with the structural criticism. It looks like editors can't see a problem.

So yes, it looks likely MEPedia will end up being just another site promoting dubious treatments, harming the public image of ME/CFS patients.

 

[Sasha]

I don't want articles on chelation, coffee enemas and fasting (the contents of the "Detoxification" category) to be associated with ME/CFS. I think it's easy to see how this could negatively affect advocacy efforts.

Thanks for replying, A.B. So your concerns are restricted to the treatment pages?

I just checked the recent contributions and there are no signs of editors engaging with the structural criticism. It looks like editors can't see a problem.

MEpedia is run by patients. I don't think we can expect an instant response to concerns raised.

So yes, it looks likely MEPedia will end up being just another site promoting dubious treatments, harming the public image of ME/CFS patients.

If that's your view, and you're unwilling to give the patients working on MEpedia time to work through a constructive solution to the points you raised, would you at least consider changing your title to "Why treatment pages on MEpedia are flawed and potentially harmful to advocacy"?

 

[A.B.]

Thanks for replying, A.B. So your concerns are restricted to the treatment pages?

Treatments concern me the most. It's easy to see that editorial rules are important for other topics as well. The title is an accurate description of the situation in my opinion.

MEpedia is run by patients. I don't think we can expect an instant response to concerns raised.

There have been responses here as well and they don't seem to indicate a willingness to make changes. It would also be logical to agree on editorial rules before more content is added, because content must conform to the rules and there is the risk of doing unnecessary work on content that will have to be changed once rules are in place. Again this should be easy to see. What has happened? Editors have asked for more people to step up and become contributors.

One could interpret this all as there already being an unwritten editorial policy in place.

 

[Hip]

The irony of this thread is that when the Phoenix Rising forum tried to start its own ME/CFS Wiki a few years ago, it was a complete failure, due to members of this forum not taking any interest, and not showing any enterprise in providing content.

Now that someone else has done a fantastic job of kicking off a great ME/CFS wiki project, the MEpedia, there are some PR members who offer no praise, and just criticize.


Now constructive criticism can be a good thing, but it is best done in context of overall praise for other people's efforts, if those efforts are good. Overall MEpedia I think is a fantastic project. I know how difficult it is to do anything with ME/CFS brain fog, so the rapidity by which MEpedia is growing is impressive, all the more so because 90% of the content has been written by two people.

Arguably the presence on the home page of some of the non-evidence based treatments may be detrimental from the point of view of giving ME/CFS scientific and medical respectability, but this is minor negative (if it is indeed a negative, because there are differing opinions), compared to the overall impressive nature of the project.

 

[Kati]

I support @A.B. 's position In keeping the title what it is. It is reflecting on the dangers of misinformation and slanting on alternative treatments as being current treatments.

The danger is that health officials ( from all countries) and the medical community will read this and view us as a community as being 'nuts'. How we present ourselves is of upmost importance.

I hesitate in getting involved because my views regarding the treatments are strong. If I edit some of the stuff out I bet a lunatic will bring it back up and it will end up in war. I have better use of my precious time.

 

[Hip]

There have been responses here as well and they don't seem to indicate a willingness to make changes.

If you look at the MEpedia home page, there is already a restructuring of the treatments into the following categories:

Pharmaceuticals

Herbs, Supplements and Nutraceuticals

Alternative interventions

 

[JenB]

Hi everyone – I personally have no plans to use MEpedia "heavily" (or at all) in #MillionsMissing. Nor have any organizers I am aware of expressed that intention or even discussed this. It's not on anyone's radar. I was unaware this post was made on our Facebook page and am trying to figure out how it happened. I think it was made in error by a volunteer. I wasn't clear as to why the project was being attacked on this thread after so many months of complete indifference and lack of participation. Now I understand why. It's on the public web but we have no plans to "use it heavily."

I still think contributing to the primers could be useful. For #MillionsMissing, we'd want much simpler, glossy, one page fact sheets and handouts, but having all the information and references gathered in one place always makes it easier to produce them.

There is no link between #MillionsMissing and MEpedia. Never was.

EDIT:

It has been repeated numerous times that we promote dubious treatments (not true – most of the pages in question or either blank or cite published research).

We have this disclaimer on the bottom of every single page: "The information provided at this site is not intended to diagnose or treat any illness."

This list of principles: http://me-pedia.org/wiki/MEpedia:About
This list of editorial guidelines: http://me-pedia.org/wiki/Editorial_Guidelines
This list of scientific guidelines (still to be written): http://me-pedia.org/wiki/Science_Guidelines

We aim to be an encyclopedia which means that we hope to comprise the universe of topics our community, in all of its diversity, is engaging with. We can do that and have a strong commitment to science by making sure that all of the information we provide is heavily cited and contextualized. There's work to be done to be sure but this is the best time to join in and help lay that foundation. We want a commitment to science and facts, not censorship. We don't see a danger in the mere existence of controversial pages. What matters is how we engage with the material.

And for what it's worth, most of the alternative intervention pages are entirely blank, many of the other pages have links to studies and attempts to contextualize the quality of the study. Even things that sound "weird" have science behind them. The fasting page that some had such a problem with included information from studies published in Nature and Science. The two premier journals for science (especially life science) in the US. That the alternative intervention pages are largely blank and the other pages have science is, in my mind, a reflection of a combination of openness and commitment to science. We need both.

If someone from within the project proposed that we keep all of these pages but only highlight on the front page those interventions that have the best evidence base or are the most important to patients, I personally would support that. But someone would need to propose it and do the work of figuring out how that would work in practice. What I would not support is highlighting those topics that are the most respectable. Changes to the front page cannot be achieved through this discussion thread with the expectation that someone else will implement them based on criticism or prodding. It can only be changed from within the project, which is open to all to join and participate in.

If we used evidence as the standard, since we've had very, very few clinical trials on any interventions on ME patients, we'd probably need to remove nearly all of the drugs, herbs, etc. from the front page except for Rituximab and *maybe* Valganciclovir but the Valcyte studies aren't great either.

It's important to note that these links are on the front page not to advertise them to the world but encourage people to click through and edit/contribute to the pages.

 

[Jonathan Edwards]

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 base the comment on conversations with consultant physician colleagues who work at places like UCH, Great Ormond Street Hospital and other London teaching hospitals. They had never heard of a PACE trial. I think people get a distorted idea of just how much influence PACE has in the UK. Wider patterns of clinical practice may well be a problem but I am not sure that clinicians base that on PACE. If anything PACE seems to have had more influence elsewhere as far as I can see. I am happy to contribute to the effort to make the poor quality of the PACE trial better known but I don't think it is the reason why physicians in the UK use CBT - at least not in London teaching hospitals.

 

[A.B.]

Hi everyone – I personally have no plans to use MEpedia "heavily" (or at all) in #MillionsMissing. Nor have any organizers I am aware of expressed that intention or even discussed this. It's not on anyone's radar. I was unaware this post was made on our Facebook page and am trying to figure out how it happened. I think it was made in error by a volunteer. I wasn't clear as to why the project was being attacked on this thread after so many months of complete indifference and lack of participation. Now I understand why. It's on the public web but we have no plans to "use it heavily."

I appreciate the clear statement.

 

[Skippa]

I base the comment on conversations with consultant physician colleagues who work at places like UCH, Great Ormond Street Hospital and other London teaching hospitals. They had never heard of a PACE trial. I think people get a distorted idea of just how much influence PACE has in the UK. Wider patterns of clinical practice may well be a problem but I am not sure that clinicians base that on PACE. If anything PACE seems to have had more influence elsewhere as far as I can see. I am happy to contribute to the effort to make the poor quality of the PACE trial better known but I don't think it is the reason why physicians in the UK use CBT - at least not in London teaching hospitals.

The CFS clinic I attended were handing out paperwork with PACE in the footer.

 

[mfairma]

What bothers me most about this whole thread, which, frankly, mirrors much of what I have seen watching advocates in this community over the last six years, starting with Marley and Pandora, is the defensiveness, the lack of understanding about the importance of strategy and planning, the inability or unwillingness to understand and engage with substantive criticism, and the lack of awareness that success is contingent on attracting the right talent, that how you engage sends messages that attract or deter. We need a professionalization of advocacy and I struggle to see how that will develop given these conditions. It's all very depressing.

 

[Snowdrop]

I base the comment on conversations with consultant physician colleagues who work at places like UCH, Great Ormond Street Hospital and other London teaching hospitals. They had never heard of a PACE trial. I think people get a distorted idea of just how much influence PACE has in the UK. Wider patterns of clinical practice may well be a problem but I am not sure that clinicians base that on PACE. If anything PACE seems to have had more influence elsewhere as far as I can see. I am happy to contribute to the effort to make the poor quality of the PACE trial better known but I don't think it is the reason why physicians in the UK use CBT - at least not in London teaching hospitals.

I could be way off base here but I thought that PACE was part of the rational for the NICE guidelines for ME. In which case no-one needs to have heard of PACE they are simply following the guidelines?

 

[BurnA]

I could be way off base here but I thought that PACE was part of the rational for the NICE guidelines for ME. In which case no-one needs to have heard of PACE they are simply following the guidelines?

Yeah and no one needs to have heard of PACE to read newspapers either.

 

[MEPatient345]

@JenB I posted it.

Sorry everyone for the confusion. I shouldn't have used the word "heavily". It has been super confusing for everyone. At the time, I had no idea there was so much concern about MEPedia, and I hoped it would have a role for a portion of the audience.

Since it's contentious, we will not link to the primers on MEPedia from MIllionsMissing.org. We will just have high level information. I'm going to delete a post above where I was probably overly "defensive" as @mfairma says. I am busy and tired and it's easy to get defensive, but I don't want people to think that's how MIllionsMissing volunteers are. We are trying to do our best with a pretty small number of volunteers and a lot to do. And so are the people working on MEPedia.

 

[Sasha]

I could be way off base here but I thought that PACE was part of the rational for the NICE guidelines for ME. In which case no-one needs to have heard of PACE they are simply following the guidelines?

No, the 2007 guidelines preceded PACE, but they're on the static list because PACE's ostensible results support the poor-quality evidence from earlier, smaller trials that showed positive results for CBT and GET.

 

[Snowdrop]

No, the 2007 guidelines preceded PACE, but they're on the static list because PACE's ostensible results support the poor-quality evidence from earlier, smaller trials that showed positive results for CBT and GET.

Ahh, thanks--I think I'd read that somewhere before--if only I could find my list of 'things I've forgotten'

 

[Comet]

I base the comment on conversations with consultant physician colleagues who work at places like UCH, Great Ormond Street Hospital and other London teaching hospitals. They had never heard of a PACE trial. I think people get a distorted idea of just how much influence PACE has in the UK. Wider patterns of clinical practice may well be a problem but I am not sure that clinicians base that on PACE. If anything PACE seems to have had more influence elsewhere as far as I can see. I am happy to contribute to the effort to make the poor quality of the PACE trial better known but I don't think it is the reason why physicians in the UK use CBT - at least not in London teaching hospitals.

Don't want to take this thread O/T, and not necessarily aiming this post at Jonathan Edwards, but I want to make a quick point about this.

I don't know about the UK, but I've had more than one doctor in NY allude to ME/CFS being psychosomatic and ask if I've had therapy, "Cuz, ya' know, there've been studies..."

They probably don't have the vaguest clue about the specific facts about PACE or any other CBT/GET or ME/CFS studies. But they know that "there've been studies..."