Why MEpedia is flawed and potentially harmful to advocacy

[Groggy Doggy]

My feedback is to ask the opinion of an attorney about the best way to post potential treatments; i think we have a few on PR. Maybe add some kind of warning about consulting with your doctor first? Also could we include someting to the effect that we don't recommend these treatments nor profit by posting them?

i found this page:

http://www.consumermedsafety.org/he...medicines-consult-with-your-doctor-before-use

@JaimeS as a suggestion, could we include this topic in one of the monday threads? (legal disclaimer for posting potential treatments?)

GD

 

[wdb]

I'm not clear why MEpedia in particular is getting such criticism. In terms of significant online organisations, businesses, communities, bloggers etc and how much they write positively about speculative or alternative treatments or click-bait articles on miracle supplements or anecdotal recovery stories I'd put MEpedia nowhere near the top of the list if on the list at all.

 

[JaimeS]

My feedback is to ask the opinion of an attorney about the best way to post potential treatments; i think we have a few on PR. Maybe add some kind of warning about consulting with your doctor first? Also could we include someting to the effect that we don't recommend these treatments nor profit by posting them?

i found this page:

http://www.consumermedsafety.org/he...medicines-consult-with-your-doctor-before-use

@JaimeS as a suggestion, could we include this topic in one of the monday threads? (legal disclaimer for posting potential treatments?)

GD

Thanks for tagging me, @Groggy Doggy .

That's a very good idea. Such a good idea I visited the page and scouted around briefly because I wondered if someone had done it already!

If they have, they haven't made it prominent enough to find quickly. I think that a legal disclaimer should be at the bottom of every page automatically. Let's chat about it Monday!

-J

 

[A.B.]

I'm not clear why MEpedia in particular is getting such criticism. In terms of significant online organisations, businesses, communities, bloggers etc and how much they write positively about speculative or alternative treatments or click-bait articles on miracle supplements or anecdotal recovery stories I'd put MEpedia nowhere near the top of the list if on the list at all.

As far as I understood, there are plans to take advantage of the publicity generated by the publication of Jennifer Brea's Ted talk by linking to a website with good information on ME/CFS. MEPedia has been suggested as this site. So MEPedia would have huge exposure and be advertised as source of good information. Possibly also during the next millionsmissing campagin.

If you look at MEPedia, it's already has sections targeting doctors, journalists, etc. ie. not patients, but outsiders.

I hope it's clearer now why I'm singling out MEPedia and why I'm concerned what outsiders will think.

Even if MEPedia isn't promoted in such a manner I still think that it's tied to MEAction project and that it could be harmful to advocacy efforts if MEPedia resembled one of the many sites promoting dubious treatments.

I'm sorry if editors feel that I'm devaluing their work. Wikipedia works well for historical information, such as x y z happening on day so and so but poorly on topics where it's difficult to reach a consensus and I think there's clearly a case to be made for stepping back from letting anyone and everyone write a page on their preferred supplement and taking a conservative stance instead.

 

[Hip]

The problem is that MEpedia is at risk of becoming just another page promoting all sorts of whacky treatments.

I don't see value in having a page on dark chocolate or mastic as potential treatments (just to name two). Do you see these as valuable? If so, why?

For those curious, the treatment section http://me-pedia.org/wiki/Category:Potential_treatments

I don't agree with your criticism, because the use of supplements is a valuable means of treating ME/CFS symptoms to some degree, if you have the finances, curiosity and persistence to experiment with them.

Likewise the off-label use of drugs, which you could also class as a type of alternative treatment.



As for the efficacy of dark chocolate for ME/CFS, this is one treatment I found has some efficacy for reducing the inflammatory feeling in my head (which I have a lot of, since I was hit with viral meningitis / encephalitis a few years ago). So for me cocoa provides some mild but useful benefits.

The MEpedia page on cocoa provides a reference to a small study that found some evidence of benefit for ME/CFS. I would not class cocoa as "whacky," and if you spend just 60 seconds on Google, you can find plenty of other studies that suggest cocoa might be helpful, eg:

The anti-inflammatory properties of cocoa flavanols

Can consuming flavonoids restore old microglia to their youthful state?

The neuroprotective effects of cocoa flavanol and its influence on cognitive performance

 

[MEPatient345]

@A.B. You are correct.. There is a redesign of Millionsmissing dot org in the works, and on one page, there will be high level information about ME, with a few links to 2 of the primers (public and doctors) on MEPedia for detailed information. I chose them to link to as they are quite complete. That is why I asked more people to contribute to it, and suggested specifics before, about missing information on those pages, and others, that could be added in the next few months, before we launch.

I suggested someone add rhe QoL study to http://me-pedia.org/wiki/Primer_for_doctors_and_researchers#Prognosis
It is a HUGE effort to design and build the new website, and all the assets for it, so any assistance would be gratefully appreciated!

 

[Jonathan Edwards]

@Jonathan Edwards I'm sorry to drag you into this, but I think it's important that a doctor gives his opinion on this matter. Do you think that the current approach may be harmful to the image of patients?

Yes, I was just starting to read the thread before dinner and that my general thought was to strongly agree with your first post. I have not read through a lot of MEpedia entries recently but I can see a potential problem for advocacy.

Ahhh. But gotta say, I don't think that's 'management' doing the work, but people who have previously contributed to that page.

This is where I think you are being simplistic Jamie. No successful wiki I know just works by people putting up whatever they like. Wikipedia, at least in the biomedical areas that I contribute to is micromanaged by committees of people committed to sifting through every detail. There are specific teams for managing each topic and they have long conversations with anyone seriously trying to contribute to scientific topics. The 'Talk' pages can go on for ever.

I think that if MEpedia is going to serve its community it is going to need to be choosy in the same way. You can put things on Wikipedia without citing published evidence but you rapidly get told to find a citation. The problem for MEpedia is the shortage of experts to act as moderators - but without them you are likely to get a mass of stuff that may be as disinformative as informative.

I agree that these things take time to mature, but I think moderation is going to be essential for success. And I agree with A.B. that this has quite important implications for the politics of advocacy. Things need to move on and the evidence base firm up for the rest of the world to take ME seriously.

 

[Hip]

I think that if MEpedia is going to serve its community it is going to need to be choosy in the same way. You can put things on Wikipedia without citing published evidence but you rapidly get told to find a citation.

What kind of evidence level would you suggest is acceptable for MEpedia?

In Wikipedia medical, from my occasional efforts at editing it, I know that references to primary sources (like a single study in some biomedical area) tend to be considered unacceptable, and I discovered if you want to insert a sentence or two into a Wikipedia article that does not immediately get queried or deleted by another editor, you'd better make sure that sentence is backed up by a reference to a secondary source (like a review study).

In ME/CFS, there is are not many areas where you find secondary source references such as review papers, so if you restricted the MEpedia to secondary sources only, there'd be almost nothing in the MEpedia!

If you allow both primary and secondary sources in MEpedia, then you will find that treatments such as cocoa can be included, because these are backed up by primary source references. There are a lot of supplements that in primary source studies have shown some efficacy for treating ME/CFS.


Though certainly ME/CFS treatments which have a stronger evidence base would probably want to be highlighted. Some of these stronger evidence treatments can be found in this Wikipedia article:

Chronic fatigue syndrome treatment - Wikipedia

 

[Mel9]

Yes! This is exactly my thought pattern. We could host edit-athons for a space of 3 or 4 hours, anyone can jump in and join the party for however long they can, even if it's only a few minutes. Bring your own booze though...

Need more time to accomodate those in different time zones

 

[barbc56]

I really like this idea.

What kind of evidence level would you suggest is acceptable for MEpedia

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

If we Include such treatments as chocolate, we will be a laughing stock and we don't need that.

The studies for many of these dubious treatments have little or poorly designed studies/theories behind them. IMHO, this includes supplements, the methylation process, vaccinations are dangerous etc. etc. etc. Most of the studies backing these treatments are poorly designed or rely on anecdotes which may be attributing a treatment as working when it could be something else. There's also good science to counter some these theories.

You have to go beyond calling a treatment credible just because there are studies included and look at each one with a critical eye. Look at the PACE study as an example of a poorly designed study and touting it as a treatment. I also like the example of a study examining whether wearing a parachute when jumping out of a plane prevents death. Plausibility is a huge factor when looking at treatments.

Otherwise IMHO, we will be doing this community a grave diservice and will lack credibility among the medical community.

Understand I am not saying others should not try these treatments, nor have access to them. Nor is this the thread to debate the merit of each treatment. I was using some of these treatments as an example. My point is if we want credibility we need to cite credible sources and justifications to back up any treatment approach.

It's late but I will come back and add some sources at a later time.

Here is a good overview.

https://www.sciencebasedmedicine.org/about-science-based-medicine/

I thought it might be helpful to include this quote.

Science-Based Medicine is dedicated to evaluating medical treatments and products of interest to the public in a scientific light, and promoting the highest standards and traditions of science in health care. Online information about alternative medicine is overwhelmingly credulous and uncritical, and even mainstream media and some medical schools have bought into the hype and failed to ask the hard questions.

We provide a much needed “alternative” perspective — the scientific perspective.

Good science is the best and only way to determine which treatments and products are truly safe and effective. That idea is already formalized in a movement known as evidence-based medicine (EBM). EBM is a vital and positive influence on the practice of medicine, but it has limitations and problems in practice: it often overemphasizes the value of evidence from clinical trials alone, with some unintended consequences, such as taxpayer dollars spent on “more research” of questionable value. The idea of SBM is not to compete with EBM, but a call to enhance it with a broader view: to answer the question “what works?” we must give more importance to our cumulative scientific knowledge from all relevant disciplines.

 

[Kati]

Personally I refuse to participate in a project that lists detox, fastings and coffee enemas at the same level as Rituximab when it comes to treatments. I glanced over at fasting, which basically quote that it may be helpful for ME as it is for cancer. This offends me. My mother was a firm believer that fastings would be the cure to her breast cancer. It only made her weaker, more cachexic and allowed the cancer to gain great strides on her.

The evidence for COQ-10 for mitochondrial disease is poor. That should raise some big flags that COQ-10 and supplements for ME are simply providing the patients something to spend money on, and the belief that these supplements are doing something good.

I thank @A.B. for telling it like it is. I feel strongly about the portraying the alternative treatments as evidence. It just makes us all as a patient population look crazy and with all the stigma out there about this disease, it doesn't look good at all.

Detox, diets, supplements are no treatments at all and not evidence-based. Look at us all, the greater majority is no better.

If cancer centers was listing special diets and supplements at the same level as chemotherapy for most cancers under "treatments" there would be a huge outburst in the medical community. Our problem is that the medical community doesn't give a s$#% about us. Bringing alternative treatments into the mix is not going to help our case with the scientific community.

 

[Kati]

I don't agree with your criticism, because the use of supplements is a valuable means of treating ME/CFS symptoms to some degree, if you have the finances, curiosity and persistence to experiment with them.

Likewise the off-label use of drugs, which you could also class as a type of alternative treatment.



As for the efficacy of dark chocolate for ME/CFS, this is one treatment I found has some efficacy for reducing the inflammatory feeling in my head (which I have a lot of, since I was hit with viral meningitis / encephalitis a few years ago). So for me cocoa provides some mild but useful benefits.

The MEpedia page on cocoa provides a reference to a small study that found some evidence of benefit for ME/CFS. I would not class cocoa as "whacky," and if you spend just 60 seconds on Google, you can find plenty of other studies that suggest cocoa might be helpful, eg:

The anti-inflammatory properties of cocoa flavanols

Can consuming flavonoids restore old microglia to their youthful state?

The neuroprotective effects of cocoa flavanol and its influence on cognitive performance

Yes chocolate is beneficial for all ailments, likewise for wine and smokers will actually say that the nicotine is helpful to them. This is simply popular science, good for media soundbites. However this is not a treatment per se. This should not be put at the same level as Rituximab or else, there should be specific double blind placebo control clinical trials, which I doubt it will happen.

i have never heard Drs Klimas, Peterson, Montoya, etc tell their patients to eat chocolate nor have I ever administered IV chocolate to my patients when I was a nurse. Granted I haven't worked as a nurse for nearly 8 years now...

 

[Gingergrrl]

Yes chocolate is beneficial for all ailments, likewise for wine.

Not necessarily true and the level of histamine in wine could theoretically kill someone with MCAS (and a definite subgroup in ME/CFS, have MCAS or some level of histamine intolerance.) Am not saying this to be funny or argumentative, and have never looked at MEpedia, but if it is promoting things that could be dangerous for certain subgroups, I'd want there to be a huge disclaimer first! This is a general comment and not directed at Kati!

ETA: Also wanted to add that many POTS patients cannot eat chocolate or caffeine at all. So am hoping the MEpedia does not state that these types of things are okay across the board? I guess I should read the MEpedia before making an opinion but am hoping it does not have a bunch of things listed as treatments that many patients cannot tolerate or even get ill from. (again, in no way directed at Kati, just thinking in general)!

 

[Jonathan Edwards]

What kind of evidence level would you suggest is acceptable for MEpedia?

In Wikipedia medical, from my occasional efforts at editing it, I know that references to primary sources (like a single study in some biomedical area) tend to be considered unacceptable, and I discovered if you want to insert a sentence or two into a Wikipedia article that does not immediately get queried or deleted by another editor, you'd better make sure that sentence is backed up by a reference to a secondary source (like a review study).

In ME/CFS, there is are not many areas where you find secondary source references such as review papers, so if you restricted the MEpedia to secondary sources only, there'd be almost nothing in the MEpedia!

If you allow both primary and secondary sources in MEpedia, then you will find that treatments such as cocoa can be included, because these are backed up by primary source references. There are a lot of supplements that in primary source studies have shown some efficacy for treating ME/CFS.


Though I certainly ME/CFS treatments which have a stronger evidence base would probably want to be highlighted. Some of these stronger evidence treatments can be found in this Wikipedia article:

Chronic fatigue syndrome treatment - Wikipedia

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.

I am afraid that the treatment section on MEpedia should maybe be very slim indeed. I see no point in disseminating disinformation and it will damage the credibility of any advocacy effort to have lots of half-baked ideas in there.

 

[Skippa]

We have a problem here.

We can stick to our guns and call for evidence based medicine all we want, and disregard the rest... But... The problem is... Evidence based medicine for CFS ain't coming.

Ok ok so there's rituximab... But what else?

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.

At the same time, I can see just how damaging a lot of these quack treatments being included will be to anyone looking at a resource such as mepedia... people will just roll their eyes and click somewhere else... Not so good for advocacy.

So... A rock and a hard place is where we're stuck... As usual.

 

[adreno]

We can stick to our guns and call for evidence based medicine all we want, and disregard the rest... But... The problem is... Evidence based medicine for CFS ain't coming.

Ok ok so there's rituximab... But what else?

Wot? I think you need to do more reading on the forum. OMF, Lipkin et al. and several other researchers are working hard as we speak.

 

[Kati]

This is where we as a community need to draw the line.

To do so, we can look at similar diseases. What are the recommended treatments for rheumatoid arthritis, diabetes, multiple sclerosis?

It is in my view perfectly ok to say there are no FDA-approved drugs for ME. That the closest drugs would be Ampligen and Rituximab.

That patients often have no other choice but to treat themselves following different diet and supplement regimens, none of which is proving to be a cure or even close to a treatment.

This way we are opening the door to scientists, physicians and pharma to enter the field. This is what is needed.

 

[Skippa]

Wot? I think you need to do more reading on the forum. OMF, Lipkin et al. and several other researchers are working hard as we speak.

It's more of a "in 30 years we haven't got a lot to choose from".

I want help NOW... sure they are working hard, but where is my pill?

Until I get my pill, I'll have to suffer or seek alternative treatments... Ps i hope things change v soon and I look forward so seeing what the researchers you mention come up with.

 

[Gingergrrl]

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?

 

[adreno]

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 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.